Fighting AMY - A Journey into the World of Amyloidosis

February 15, 2011 - Day 1031

2011-02-15T09:26:00.001-05:00

Good Morning Friends,
I am back to talk about the past 774 days when I was incommunicado.
There are many tales to tell about edema, low sodium, the results of
over-medication, falls that resulted in some fairly serious wounds and brusing, trips to the hospital and ICU and my opinion about "modern medicine".
There are stories about just how low I can get, dragging my loved ones with me.
Perhaps the most important things I would like to tell you about is the decision to stop therapy and just try to live as normally as possible.
The other thing (and most significant I believe) is about Jo Ann, my caregiver and the strength she has given me and shown in herself through this whole ordeal.
For the most part, I won't be writing every day as in the past, but it is my intention to write at least once or twice a week,the good Lord willing.We will just have to see how it goes.
Thank you for all of your inquiries that never seemed to get answered. They helped us get through this rough period.
For now, that is all.
Doug

January 12, 2010 - Day 267

2010-01-12T23:33:00.000-05:00

Good evening everyone.
I am okay, it is just that the last month has been kind of rough as the chemo starts to take its toll, causing severe fatigue and upsetting what little balance is left in my body.
I just didn't have the energy or where with all to sit down and write the blog.
I will try and start posting on a regular basis again tomorrow during the day.
Thanks for your concern.
Doug

December 15, 2009 - Day 239

2009-12-15T23:02:00.001-05:00

The fog is rolling in and unless the sun comes out soon and burns it off quickly, I am heading into the big crash just like last week.
I was hoping that this would not occur again this week, but it looks like an inevitable outcome.
I guess that I can assume that this is the way things will be from now on.
Two good days and five lost days, not a very good ratio, but one I will have to learn to live with for a while.
Maybe it won't be quite as bad, but maybe it will be worse although I can't imagine what that would be like.
I don't think much of anything could be worse than last week.
We are going to see a pulmonary doctor tomorrow in order to try and start establishing some kind of coordinated care program for me along with Dr. Abe and a gastro guy to be named later.
I will make every effort to write tomorrow and let you know how it goes.
If I disappear for a couple of days, you'll know that I climbed back into my cocoon to ride out the week and I will be back as soon as I morph back into human form.

December 14, 2009 - Day 238

2009-12-14T23:15:00.002-05:00

Hi, I am back. I don't for how long, depends on how hard the Velcade and Dexamethasone hit me this week I guess. If it is anything like last week, I may have to disappear again for a while.
I would like to thank those of you who missed my blog and inquired via email to Jo or by phone as to what was going on with me last week. You are appreciated for your caring attitude towards Jo Ann and me.
Round 3 Dose 3 of my Velcade/Dex was taken today so I am a little wound up from the steroids and feeling my oats this evening, so I am able to write again.
I don't know where to begin to describe what last week was like or even why it happened.
As usual, the steroids started kicking in by early evening Monday resulting in no sleep that night and a groggy transition into the day on Tuesday and by early evening, into a fatigue that I have never experienced in my body.
The fatigue was so intense that it paralyzed me at times, making it almost impossible to get out of the bed without assistance from Jo Ann.
A couple of weeks ago, I wrote about what I called "The Stare" to describe what I thought was a chemo crash.
Let me tell you, I had no idea what it was really all about until last week.
Little did I realize that I could lose such touch with everything around me and still be conscious.
I had no idea that I could feel so helpless and need to rely on other people to the extent that I did last Wednesday through Sunday.
I woke up today feeling half-way decent, but it is time to start it all over again.
I don't know what is going to happen this week, but I will in a couple of days.
We talked to Dr. Abe about it today and he explained that Velcade is a drug that ramps itself up the longer that you take it and that a crash would not be that unusual.
Add to that, the Lexapro I started last week, a double helping of Dexamethasone that we added into my regimen and you have a pretty potent cocktail flowing in your bloodstream.
As I keep saying, my treatment is all a grand experiment.
We mix up the ingredients, give them a shake, stand back and see what happens.
This may not seem like the best way to do things, but that is all I have for now.
Stay tuned in for the results of the latest trial, we will play it by ear, day to day.

December 13, 2009

2009-12-13T20:25:00.000-05:00

Hi Everyone-
It's Jo Ann posting tonight. Many of you have called, while others have expressed concerns through email. Doug is doing OK. He is completely fatiqued from his last round of Velcade. For the past five days he has rested in bed with little energy to move. He has not opened his computer since his last post. I thought I would write to let you all know that he is hanging in there. We will be heading to Dr. Abe's office tomorrow, presumably for the next round of Velcade. We will see if Dr. Abe thinks Doug should take a week off before moving forward, or perhaps we will continue with the regime as planned. We will let you know.
I thank you all for your kindness and attention. It is very comforting to know that you all are there, watching over Doug from a distance. We both appreciate your caring so very much.
Until tomorrow, have a good night.
Jo Ann

December 8, 2009 - Day 232

2009-12-08T23:26:00.001-05:00

Tonight's blog will be fairly short because I am feeling extremely low physically, perhaps the side effects from the Lexapro that I started taking on Monday. A couple of people I know that take it, told me that I might expect the first couple of weeks to be full of surprises that will eventually calm down. So what else is new in this grand experiment?
We went to see the cardiologist today and once again, my blood pressure was fairly low.
Dr. Ravitsky believes that it may be due to the way that I have been dosing on the Furosemide.
I have been taking 40mg in the morning and 20mg at night and he thinks that the 40mg may be too much at one time, so we are going to try 20mg three times a day and see if that helps.
The theory is that I am removing the fluids too fast, causing the low blood pressure.
Imagine that, we want some edema to help straighten this out.
The second reason for a condensed blog is that I have been researching a topic that has piqued my interest and deservedly warrants a discussion with all the facts and figures.
I haven't been able to put it all together yet, but hope to have it ready for tomorrow.
The subject is the insane and incomprehensible laws and restrictions that the FDA places on new drugs and techniques in the medical field as well as drugs that have been around since the beginning of time.
There are at least three items for this discussion, the most controversial being the medical marijuana issue which seems to stir emotions akin to abortion and the Middle East wars.
For me, it's a no brainer.
If there is something out there can give comfort or help me or someone else, it should be our choice whether to participate in its use or not.
I understand the mission of the FDA, but they need to have a more flexible policy when it makes sense.
Chronic disease treatment for the most part is experimental, so why not make it easier for people to participate in it?
Most of us are living experimental lives and would be more than willing to take the chances associated with experimental treatment, drugs and techniques.
Just give us the chance.

December 7, 2009 - Day 231

2009-12-07T23:11:00.001-05:00

A little bit of history fact for today.
"...Deceember 7, 2009, a day which will live in infamy ..."
The Infamy Speech was delivered at 12:30 p.m. on December 8, 1941, by United States President Franklin D. Roosevelt, one day after the Empire of Japan's attack on Pearl Harbor Naval Base, Hawaii. The name derives from the first line of the speech.
Within an hour of the speech, Congress passed a formal declaration of war against Japan and officially brought the U.S. into World War II. The address is regarded as one of the most famous American political speeches of the 20th century.
Perhaps no other date is more significant in the history of the United States other than July 4.
The courses of millions of lives, the path of technology and the eye opening cruelty of war were forever changed in the minds of an innocent United States on this day.
Please remember what happened and who it happened to on this day.

Dr. Abe's was on tap for today. Vitals were okay, my blood pressure was a little low again, but no one seemed that concerned so neither am I.
My blood numbers were good again which is real bonus. I may be dodging some of the peripheral problems associated with chemotherapy and amyloidosis.
Today I received Dose 2 Round 3 of Velcade/Dexamethasone.
It seems to have hit pretty hard but it is manageable.
When we arrived home from Dr. Abe's, I went to bed and slept a good part of the afternoon away.We'll see how the night goes as the Dex starts to kick in.
I am pretty tired right now so maybe I'll be able to sleep despite the steroids.
Tomorrow we go to see Dr. Ravitsky, my cardiologist, for his turn at poking and prodding. Everything he is concerned with seems to be working properly (except my BP) right now so there is no reason to expect anything but a decent report.
I also started the Lexapro today, but it can take several weeks to reach full potential.
We'll just have to wait and see.

December 6, 2009 - Day 230

2009-12-07T00:55:00.001-05:00

Some random thoughts:

The Indianapolis Colts and the New Orleans Saints are both 12-0. Who will blink first?
Christmas Day is only 19 days away.
Brett Favre is The Picture of Dorian Gray.
How could Tiger Woods be so stupid and shallow? He had the world as his oyster and all he will end up with is the smell of dead rotten fish.
I know someone who is deathly afraid of all kinds of bugs, yet will climb inside a metal tube with 175 other people and hurdle through the sky at 500 mph. Doesn't make sense to me.
Do dogs have a soul or is this just wishful thinking on the part of owners?
The song says that The Hokey Pokey is what it's all about. Could this be true?
Why do people build 10,000 square foot homes for two residents?
You really can't take it with you, can you?
What deep seeded childhood experiences determine what we consider our favorite color?
I am a fairly intelligent person. After reading everything I can about the health care plans proposed for our country, the only thing I am sure of at this point is that we the people are going to get screwed somehow, some way.
Did you thank a veteran today for his/her service today?
Who is going to win? Amy or Doug?
It is said that your health is the most precious gift you have. This is unequivocally true. Don't forget it.
If I've got it, should I flaunt it?
Why am I sleeping on the very edge of the bed and the 25 pound dog has the rest of the mattress all to himself? This must be some immutable law of nature because it happens almost every night.
Tomorrow (Monday) is chemo day. Round 3 Dose 2. 8:15 AM, be there or be square.
Tonight's musical selection is live Grateful Dead recorded in Hartford, CT on May 10, 1980.

December 5, 2009 - Day 229

2009-12-06T00:32:00.000-05:00

I haven't posted in a couple of days for reasons that I really can't explain.
It may be in part to laziness, but I think it is more because of the state of my mind and body right now.
I am just plain worn out from the chemotherapy and the resulting lack of activity, both mental and physical.
There is just so little energy by mid week, that it is easier to just lay back and watch television than it is to get up off my ass and do something.
Once the steroids and Velcade rush wear off, everything I do is just more effort than I care to expend.
I realize that this is a bad attitude to have and that I need to work on improving it.
I need to force myself to make my days more active whether I feel like it or not.
Having lost the ability to do anything significant physically, it is hard to come up with activities to carry out.
I have been watching hours of DIY television programs and am ready in my mind to do all sorts of projects around the house, but my body is in no shape to carry them out.
Just sitting around is absolutely sapping me physically and mentally, I need to swing a hammer or hang a light fixture.
This is very frustrating for me, a person who is used to doing these kinds of things myself.
Part of this is the funk (depression) I now find myself in. Hopefully the Lexipro will start to kick in soon and help me heal a bit.
For the time being, I will commit to making sure that the blog gets posted everyday without fail.
I may come up with some off the wall topics, but there are plenty around us to write about.

December 3, 2009 - Day 227

2009-12-03T22:54:00.000-05:00

The holiday season is on us now with full force demanding our attention wherever we look whether it is the corner lot where they sell trees, billboards staring us down as we cruise the highway or the decorations that our neighbors have on display.
I think that the one important thing to remember during this time is that no matter how tough you think you have it, there is someone out there less fortunate than you are.
That being said, it is your duty as a member of society to do what you can to help them in some sort of way.
It may be monetary or it could be something as simple as visiting a nursing home in your neighborhood with a plate of cookies and some conversation for the residents.
Get creative, there is always something that you can do to help someone weather the storm that is pelting down on them at the moment.
We can always find a way to give a little bit. It may require some insignificant personal sacrifice like not going out to dinner one night and donating that money to the Salvation Army (or other cause of your choice) or it could be one less gift that you buy to put under the tree that would help to feed the homeless at a shelter in your city or town.
You could send a Thank You note to our troops by visiting the site provided by Xerox.
My personal favorite is the Toys for Tots program administered by the U.S. Marine Corps.
It doesn't take much to provide a gift for a child who otherwise might not be able to share in that aspect of the joys of the season.
Next time you are out with your foursome, make everyone kick in an extra five bucks and use the money to buy a doll for some little girl.
Walk around the office and see how many people you can get to kick in a couple of bucks and use the money to buy a board game for a couple of kids.
I have always had alot of fun taking the money and going shopping for the toys.
All it would take is a couple of hours of your time and I guarantee that it will give you a warm and fuzzy feeling in your gut, plus you'll be surprised how much fun you can have looking at and buying the toys of your youth like Barrel of Monkeys or Operation.
I hope to be able to do it this year and will make every attempt to do so, but I am counting on you to pick up the slack for me if I can't.
They say that it is better to give than to receive and I believe that this is true. If you never have done it, try it. You might just like it.
Somewhere down the road there will be a payback for the time and effort you expend to make a stranger's life a little more enjoyable.
Good Karma is a powerful force and the more you expend, the more you can expect to receive.

December 2, 2009 - Day 226

2009-12-02T21:21:00.000-05:00

A little bit of sleep was had today as the steroid kick wound down. It felt good after being awake for so long to be able to rest my body and my mind and escape from what is going on.
I just spent the day in bed drifting in and out of movies and catching my sleep in between.
Pretty lazy day for me while everyone else had to work and perform up to expected standards.
I might be able to get used to this as I lose some of the internal drive I had before I met up with Amy.
Not really. I'm not going to change that much after 56 years of doing it the way that I have.

December 1, 2009 - Day 225

2009-12-02T00:14:00.001-05:00

It is not so bad having the chemo after a two week vacation with the exception of not having slept in the last 48 hours due to the Dexamethasone having me all jacked up. Maybe tonight I'll be able to pop a couple of Ativan and just pass out for a few hours.
I have finally accepted the fact that I am emotionally shot from the past few months of treatment and have agreed to start taking Lexipro at the urging of Jo Ann and Dr. Schwarzberg.
I am taking so many other medications that affect me, what is another one, especially if it makes me more stabile.
I can breakdown at the sight of a gecko on the back porch eating a bug or someone on HGTV making a dumb mistake. I'd say that I might be getting a little far out and could use the help.
Today was my birthday and every card (even the humorous ones) made me fall apart.
I don't know if it was because I may not see another birthday or because of the sentiment expressed by the card givers, but every one of them was a tear jerker for me. What should have been fun, was depressing although they did mean alot to me and made me feel good deep inside.
As soon as my cardiologist is on board, I will start the regimen in hopes of improving my outlook on things. I need Dr. Ravitsky's approval due to interaction between the Lexipro, the Warfarin and the Furosemide.
Nothing is simple when treating a serious disease. Things that seem simple can quickly become complicated when considering the whole picture of your treatment plan.
As Roseanne Roseannadanna used to say ""Well it just goes to show you, it's always something."

November 30, 2009 - Day 224

2009-12-01T00:31:00.001-05:00

Round 3 Dose 1 of my Velcade/Dexamethasone is in the books.
My conclusion is that the treatment, even with its side effects is better than the chemo vacation that I just took.
It seems that as my body worked to heal itself from Round 2, the fatigue and malaise were much more intense and long lasting than anything I have experienced during treatment weeks.
This gives me a new perspective on treatment weeks and whether they were as bad as I thought.
They actually are something to look forward to. I look forward to them now because they make me feel better and because I am fortunate to even be having them and the chance to beat Amy.
All Jo Ann's and my family will be gone come Tuesday morning and we can stop eating and get back into our normal routine around here.
It was nice to have everyone around, a little too much commotion at times, but fun nonetheless. Some days just wore me out trying to keep up with the action and I probably tried to do too much, but opportunities to have the entire family together are few and far between and need to be seized on when they present themselves.
I appreciate the time and the resources it took for everyone took to come and visit Jo Ann and me at our home.
Although we had our coldest weather of the year the last few days, most of them were more than happy to be away from their northern residences.
Recently it has often been difficult to muster the motivation and strength to sit down and write this blog every day.
Hopefully now that we are back on schedule, I'll get regular again and will try to write in a little less disjointed manner, as I feel that I have lost some of my focus. Whether this loss of focus is from the drugs or just natural attrition caused by time, I don't know. We will see where it goes from here.
Thanks for hanging in there.
Doug

November 29, 2009 - Day 223

2009-11-29T21:48:00.000-05:00

Tomorrow is Velcade and Dex and it is coming none too soon as far as I am concerned.
This chemo holiday that I have been on has been anything but a vacation.
The fatigue that has accompanied has been as bad as any I have experienced and I have been on some wild emotional swing for the past few days.
I am still very early in this fight but I am already growing weary of the ups and downs with no apparent end in sight.
Tomorrow night I will be all fired up on the steroids and I will write then.
For now, it is time to lay back and wait for the morning.
Goodnight.

November 27, 2009 - Day 221

2009-11-27T23:57:00.000-05:00

A rather bittersweet day as I wrapped up my visit with some of the family who are leaving tomorrow to head back to Michigan and to DC.
My mom, my youngest brother and one of my nephews will be around for a couple of more days, so I'll get weaned off of the family slowly.
Thanksgiving Day was a huge success thanks to Jo Ann's incomparable organization and the help from all the people hanging around here.
The food was tasty and the company was excellent, so a good time was had by all.
All in all, it has been an exceptional couple of days, but I am worn to a frazzle by it. Even though I didn't have to do much, just the comotion associated with 20 plus people in the house made me tired.
We went out to eat tonight with the whole gang and that was it for me. The next couple of days are going to be about nothing except rest as we get ready to start chemo again on Monday.
Monday, it's back to the real world

November 26, 2009 - Thanksgiving Day - Day 220

2009-11-25T23:51:00.002-05:00

Jo Ann and I would like to take this opportunity to wish you a happy and healthy Thanksgiving Day.

If you are a reader who does not live in the States, you can still celebrate with us and our family on this special day by simply being grateful for your family and what you have that is personal and significant to you.

Personally, I have a litany of things that I have to appreciate this Thanksgiving Day.

First and foremost is Jo Ann, who has undertaken the unenviable task of caring for me and watching after me as I take this journey with Amy. I can't imagine what my life would be like right now if not for her and her unwavering loyalty.

Second, my family for the support they have given me throughout my life, for seeing me through the good times as well as the bad. They have always been there for me when I needed those intangibles that only a family can provide.

My thanks go out to the people I have met along the way as my fight with Amy progresses. The Muriels, Amys, Tims, Connies, Alices, Chrises, Trishes and Megans, who offer their support, encouragement and knowledge have helped to smooth out the daily bumps in the road that I have encountered.

The response from my friends has been a constant source of relief for me as they listen to my complaints and show understanding with my lot in life right now.

I can't say enough about the doctors, nurses and technicians that I have been fortunate enough to meet at Boston University and The Cancer Center of South Florida. Their kind and understanding care has helped to reduce the anxiety of my condition and the process involved in fighting it.

I would like to thank all of you readers out there who have taken the time to follow my story for the last couple of hundred days. I hope that you have learned something and that this knowledge may someday be beneficial to you, a loved one or a total stranger, for that is the objective of this blog.

Sometimes it may not seem like there is much to be thankful for as we deal with Amy, but everyday is gift if we find one small moment in the day to enjoy, one small memory that brings a smile to our faces.

November 25, 2009 - Day 219

2009-11-25T22:16:00.000-05:00

Final preparations are underway even as we speak for the big day tomorrow.
Most of the food is ready, tables are in place and set with the best plates and glasses and silverware, the bar is set up and people are geared up for what will be the biggest feast of Thanksgiving this house has ever seen.
Jo Ann has certainly outdone herself this time. I have no idea where she gets the energy, but it seems to be endless. I am assuming that Friday will be a big crash day for her and well deserved it will be.
My family hung around the house for a good part of the day and wore me out just with their presence.
I think I will go to bed now, it is going to be a long day and I hope to be able to beat the fatigue so I can participate to the max.

November 24, 2009 - Day 218

2009-11-25T00:14:00.000-05:00

This was my second day of the two week chemo vacation.
It has been quite pleasureable to forget just how much the chemo therapy affects me when it is going on.
I felt very human today except for the ongoing residual fatigue left over from Round 1, but overall I feel pretty good.
I've said all along that it would be pleasant to be able to step away from the treatment and the disease once in a while, so I guess this is the chance that I had been hoping for.
Unfortunately it won't last but a few more days before we start over and the reality of Amy stares us down again.
We'll just have to take these few days, use them to the max, rest up and get ready for Round 2.
Jo Ann and I will certainly appreciate them for what they bring us.
The family all arrived today and we had a good time catching up and telling lies about each other.
It was pretty emotional for me as they arrived from various parts of the country. I can't tell you how much it means to me to have everyone together.
It has been a long time since all the people who showed up were together under one roof.
So far, it has not turned out to be like one of those family reunion movies in which deep dark secrets are revealed and childhood conflicts are resolved, but I am sure that there will be plenty of conversation about these types of issues before everyone departs and returns to the rat race.
I look forward to it though, it should be fun.

November 23, 2009 - Day 217

2009-11-23T22:26:00.000-05:00

October 19, 2009
Free Kappa Light Chains           5.37mg/L
Free Lambda Light Chains        139.51mg/L
Kappa/Lambda Ratio                0.04

November 23, 2009
Free Kappa Light Chains          4.86mg/L
Free Lambda Light Chains       115.27mg/L
Kappa/Lambda Ratio               0.04

Well, there they are. The Velcade/Dex regimen seems to be doing its job.
The Lambda Light Chain number is dropping which tells us that we have Amy on the run right now.
This is good news for now.
Hopefully, we will see this trend continue through each successive round of Velcade.
We went through the euphoria of dropping numbers when I was taking Melphalan, only to be disappointed when it lost its effectiveness.
For now, we will treat these results with a guarded optimism and happiness.
During our visit with Dr. Abe today, we had a discussion about quality of life and the result was that he suggested a 2 week chemo vacation, giving me this week off while my family is in town visiting. We were quite pleased with this because I won't lose any days with the family, should be able to participate in the festvities and will get to spend time with everyone feeling like a human being instead of a drugged out amyloid patient.
Quality of life is so seldom discussed seriously that I was pleased when Dr. Abe broached the subject.
It gives me confidence that he will always consider it as my treatment continues and my condition changes.
No chemo equals no steroids and this is a pretty exciting development because it means that a state of sleep will be attainable. I won't know how to act with a little settled sleep, but I'll figure it out.
So, all in all, it was a pretty good day and an excellent way to start Thanksgiving week.

November 22, 2009 - Day 216

2009-11-22T22:29:00.001-05:00

Tomorrow (Monday) at 1:45 PM, we meet with Dr. Abe and he will have the test results from the blood work done after my first full round of the Velcade/Dexamethasone regimen.
I really don't have any anxiety over what they will be.
I'm sure that if they are not favorable, it will be upsetting but there is nothing that Jo Ann and I can do about it.
We have followed Dr.'s orders, I have taken all the medications prescribed, we have assembled quality medical care and we have armed ourselves with every piece of information available related to Amy.
This disease is out of the control of the patient and exercise, diet, live style changes and attitude are not going to change the eventual outcome, whatever it may be.
It's not like rehabing an injured shoulder that can be repaired with a little surgery and physical therapy.
Amy is going to run her course and the best we can do is throw all available weapons at her.
Hopefully, we will find out tomorrow that the first salvo we directed at her struck deep and we will be able to continue chasing her into a retreat.

November 21, 2009 - Day 215

2009-11-21T23:27:00.000-05:00

I guess that it is obvious that I have been in a funk the past couple of weeks based on some of the responses and emails that I have received from readers.
First, thank you for your concern and your words of encouragement, I do take them to heart.
Second, I'll get by it. I assume that most people fighting a chronic disease are going to find themselves in the same frame of mind I have been in as they deal with the day to day problems and surprises.
It just takes some time to accept what you have been dealt and how you are going to play it. There most likely isn't any past experience in your life to draw from and give you a perspective on the invader. It requires a new space in your brain in which to compartmentalize the situation and a new set of rules to use to break it down into understandable components.
This is a fluid situation that probably has no real end point and as such, will have to be dealt with throughout the journey.
Several caregivers that I have had correspondence with have mentioned that their charges would often just sit silently, seemingly staring at nothing or staring at the television, completely engrossed.
I didn't really pay much attention to this phenomena until I realized that I too often have "The Stare".
For me, "The Stare" is a kind of self-induced trance that removes me from how I feel and what I am thinking. It would compare to the altered state that one can achieve by practicing some form of meditation.
When I get in "The Stare", I don't notice how poorly I feel physically and all the crazy notions in my mind disappear.
It is a coping mechanism that is quickly learned, adapted to and put into use.
It may be disconcerting to someone on the outside looking in, but for me, it provides a few moments of escape and well being that can't be achieved any other way.
If you are taking care of someone who has "The Stare", don't worry about them, they are probably having some of the best moments of their day.
Hey, we take what we can, when we can.

November 20, 2009 - Day 214

2009-11-20T22:57:00.000-05:00

I had high hopes for today but it was a total wipeout.
Anything I have to say about it is better left unsaid.
Goodnight.

November 19, 2009 - Day 213

2009-11-19T22:56:00.002-05:00

Today was a rather excellent adventure as they go.
The chemo vacation finally kicked in and I felt somewhat human and as such had to start dealing with some of those things that humans deal with, like piles of medical bills and other assorted paperwork.
Enough time has passed that the effects of the Velcade/Dex have finally worn off and my body can function as normal or at least as normally as one can expect it to.
The edema has returned for some reason, so not everything is working perfectly, but I am content with what I have been given this week. (Amy just can't let go for a minute it seems. She gives you a break on the one hand but slaps you with the other, just as a reminder).
I know that I have returned to the real world because I didn't spend a single minute today watching the Food Network or the DIY channel, which is about all I can muster when taking the chemo.
Funny thing, I have heard from several caregivers in the past who told me about their patients who also sat and stared at the Food Network or HGTV throughout their illness. I guess we comprise a niche audience for them, now we just need to get them to acknowledge us and help with awareness. Fat chance of that though.
Obviously my attitude is much better today than it has been in quite a while, but that is easy when you are able to function conventionally within your limitations.
When you aren't being beat down by the disease or the drugs, an optimistic outlook comes easily to your thought process.
The trick now is to carry it over through the next 4 weeks of chemo which starts up again on Monday, just in time for Thanksgiving.
We are going to have pretty crazy holiday around here because my entire family is traveling to Florida to spend the holiday with us. At last count, there will be 18 people here for dinner and then another 6 coming over after dinner to share in the pies and cakes and ice cream.
Jo Ann's daughter, mother and father will be here as well as two of her sons, one of whom will have his fiancee, her parents, her sister and a family friend in tow as well. Unfortunately her son Jon will not be in attendance with his fiancee due to his duties at ESPN.com.
It ought to be quite the group with everyone here.
I am hoping that after this little vacation, the effects of the Velcade/Dex won't be too severe during the first week.
I don't know if it will be like starting over, but my recollection is that the first week of the last cycle wasn't too debilitating. That would be a welcome outcome since everyone will be under one roof for the first time in a couple of years and I would rather not spend any of that time knocked down.
I'll just have to monitor myself closely and not overdo anything.
Tomorrow is a new day and I am looking forward to it being better than today was.

November 17, 2009 - Day 211

2009-11-17T23:01:00.000-05:00

I had to take a couple of days off because my mood and outlook was getting just too dark, angry and pessimistic.
It was a time for a little reality check about where I stand in terms of this disease, what the prognosis is and how to handle it in terms of everyday life.
Physically, I am doing quite well compared to many people, but emotionally I don't think that I am handling things in the best manner possible.
I've slept alot of hours in the past week, partially from chemo fatigue and partly as escape from feeling lousy.
Acceptance and admitting that you have a disease like amyloidosis I believe is damn near impossible, but the reality is that you must.
Everyday you are reminded that you are sick as you down your boxes of pills, fight the edema and learn to live with the neuropathy.
This is the reality of my life right now, therefore I have to accept it and learn to live with it.

This is chemo vacation week but it has not turned out to be too much different than any other week. There are still a few days left so hopefully there will be a couple of up days before it is over and we start the Velcade again.
Blood was drawn on Monday and we anxiously await the results.

November 14, 2009 - Day 208

2009-11-14T22:21:00.001-05:00

I had made a couple of promises to myelf back when I first got sick, that there would be certain things that I would do no matter how I felt.
These commitments are turning out to be like the New Year's resolutions that we all pretend to make every year, even as we cross our fingers behind our backs.
As the days and weeks progress and the drugs contol my physiology more, every move I make becomes more labored and more difficult. Even getting out of bed and going into the bathroom becomes a task of major proportion.
I have virtually no measureable level of energy to expend on doing anything right now and it is causing a level of depression that I have never known in my life.
I am finding myself becoming more and more willing to let people do the simplest things for me and this does nothing for my outlook and sense of well being.
I know that I am becoming more difficult to deal with because I feel so lousy. I have found myself lashing out at the world when I feel this way and it is not fair to those around me and I must learn to control these emotions. Just because I am sick, this does not grant me a free pass to act however I want.
The last couple of days have been spent sleeping, perhaps as an escape, perhaps because I need it right now.
I'll give it 50/50.
My body is tired but so is my mind.
There has been alot of reflection the past few days about where this all heading, how much worse it can get and what the final outcome will be.
I am trying to ignore the negative and accentuate the positive, but feel overwhelmed by the negative side of my life right now.
I'm not looking for sympathy or platitudes so excuse me if I am coming across that way. I am just stating the facts of where I find myself.

November 12, 2009 - Day 206

2009-11-12T22:23:00.000-05:00

I don't know about you, but I have just about had it with this disease.
It has been seven months now since my diagnosis (and probably a couple of years that I have had amyloidosis) and the physical and psychological drains have me hanging on to the end of my rope.
The reality is that I have had an easy ride so far compared to many other people attacked by Amy.
I've only spent 5 days in the hospital and that was with some fairly benign complications.
So far, I have managed to avoid the pneumonias, kidney problems, liver problems, seizures and other small joys that seem to hitch a ride along the road.
However, that does not change the fact that I am getting worn out by this whole routine already.
I am tired of the Velcade and Dexamethasone that get me high one day and then knock me to my knees for the rest of each week.
Velcade is the drug that may save me but I resent its infusion every week, knowing about the fatigue it is going to bring to me as the week progresses. All other things being equal, the chemo fatigue is the worst side effect that I am experiencing right now and it is so much more than I had ever expected.
Some days, it is so intense that you can't distinguish the line between the world around you and some kind of dream. The mind may be willing but the body refuses to cooperate.
The Dex used to be my best friend, providing an energy that got me through the week, now it is just an annoyance that gives me a false sense of power that makes me think I can function in a normal fashion.
I never was one for pill taking and now I have a schedule to follow for the various and sundry medications that the docs are pumping me with. There are times when I can't face swallowing one more pink horse pill or one more bitter dose of who knows what.
I am not an invalid at this point, but there are so many things that I find almost impossible to do for myself. Independence is slowly slipping away and I find it demeaning.
My left hand is practically worthless due to the neuropathy, but what the heck? Maybe I could have a hook installed in its place.
Deep restful sleep has never come to me easily, but these days it seems to be almost nonexistent and I know that the lack of it is affecting my attitude. When it does come, it is fitful and wearing.
I feel like I am stranded on a desert island some days when I never leave the confines of the four walls of my home. I know a lot about what is going on along the 18 miles to Dr. Abe's office but that is all I ever see of the world outside The Hamlet anymore.
I am not the only one suffering from this disease. It touches everyone I know in some way or another.
It busts my heart to see what this is putting Jo Ann through as well. She never did anything to deserve what she is getting as she protects and cares for me.
No one ever said that this journey would be easy and I didn't expect it to be fun and games, but I never thought I would find myself in this frame of mind this early into it.
I am pissed off, I am tired of it and I want to know why I have it.
Why was I so lucky? I never had luck in the casino, how was I able to make the 8 in 1,000,000 odds of meeting up with Amy?
Okay, this has been my once a month "Poor Old Me" rant and I thank you for listening.
Tomorrow will be different, it will be time to just get on with it, take my shots at Amy and try to make her a vanquished foe and distant memory.
She will ultimately win in the end, but I will try to keep her from stealing every last bit of humanity that I have.
I refuse to allow her to humiliate and degrade me.

November 11, 2009 - Veteran's Day - Day 205

2009-11-11T20:45:00.002-05:00

Today is Veterans's Day 2009, a day to remember those who have given their lives in defense of our country, those who lived to tell the tale and those who currently are defending us from the threats of fanatics and other assorted despots.

No matter what your political opinion of the military and our wars, it is your responsibility as a citizen to honor these people on this day.

It is your responsibility to thank them for the fact that you can even cruise the internet and read this blog, let alone have the rest of the freedoms we enjoy in this country.

I had a story to tell you about my cousin Jim (pictured above) and his experiences in Viet Nam 1970-1971, but right now I am under the effects of extreme chemo fatigue and it is all I can do right now to write this short post.

The best I can do is thank you Jim and Matt and Bob for your service, as well as any other veteran that may read this tonight.

Hopefully, I will be able to continue my story tomorrow night.

November 10, 2009 - Day 204

2009-11-10T21:35:00.000-05:00

Next week is chemo vacation and I have already started thinking that I am in it.
I am pretending like I'm not sick and trying to do too much with my days.
I still haven't learned (or accepted) the fact that my years of working all day need to be a distant memory because they can't happen anymore.
We just had an office built in the house for Jo Ann and it was all I could do to move the computer equipment from one side of the room to the other. In fact, even with Warren's help, it almost didn't get accomplished.
A big step down for a guy that was pushing around 2,000 pound generators a year ago.
This is the reality of what Amy has stripped me of in just a few short months.

The musical selection for tonight is "It'll Shine When It Shines" recorded in 1974 by The Ozark Mountain Daredevils.

November 9, 2009 - Day 203

2009-11-09T16:41:00.001-05:00

So, here we are, back from the Stone Age, fully reconnected and operating in cyberspace again.
I am not a Luddite by any means, but I can appreciate their point of view when it comes to technology and the detrimental effects that it can have on society.
How lost are we when our internet and telephone connection is gone and we have to rely on traditional (ie, a face to face conversation or hand written letter) means of communication and interaction with our fellow human beings?
Have we really advanced ourselves when all of our communication and commerce is dependent on some copper or glass cable and we have lost the ability to connect with the rest of the world in any other way?
How many of you out there would panic if you didn’t have these lines of conveyance open to you?
What would you do if you didn’t have Twitter and Flickr and Facebook and Gmail and who knows what else, to provide your interaction with the rest of the world?
I think that the majority of people would go into a tailspin, sure that Armageddon was upon us.
It seems that every day, we become more and more dependent on technology that most of us can’t begin to comprehend.
The really frightening part of this is that all this new technology is extremely susceptible to failure, whether it be simple mechanical failure or malicious trespass.
Last night on 60 Minutes, they interviewed several experts in the field and they painted a pretty bleak picture of just how vulnerable the infrastructure and commerce environment is to hacking, mainly by government agencies, both foreign and domestic.
They went so far as to say that in the foreseeable future, we won’t be fighting wars with boots on the ground, but rather in a cyberspace environment, destroying each other’s infrastructure (power grids, water treatment, communications systems, traffic control, etc.) and the systems we use to account for money and business transactions.
Unfortunately, there are very few contingency plans in place for such an occurrence.
Only in recent months has the government stepped up to the plate and created an agency to deal with these matters in anticipation of a “9/11” cyberattack on our country.
Let’s hope that we have pulled our head out of the sand in time.

On the medical front, today was Round 2 Dose 4 of Velcade/Dex which is an exciting event to us.
We met with Dr. Abe this morning and after reviewing my blood work, he gave me the green light to finally complete my first full treatment regimen.
All of my blood counts were within tolerable ranges, so it was all systems go for launch and we successfully achieved orbit.
Everything in my body seems to be working properly so maybe I have turned the corner and can finally get on some kind regular schedule with my magic elixir.
Next week will be a rest week from the Velcade, a sort of chemo vacation if you will, with only Free Light Chain testing on the schedule.
It will be interesting to see what a week without chemo will bring in terms of how I feel.
The last time I went without chemo was during the infamous hospital stay last month, so I really have no knowledge to base my expectations on.
I would not expect to encounter the fatigue that usually finishes a chemo week, but who knows.
As with everything else connected with Amy, we will hope for the best, but be prepared for the worst.
I am on top of the world right now, but that is because today’s Dexamethasone is starting to kick in hard.
It will be long sleepless night, but looking forward to vacation makes it worth the inconvenience.
Hopefully we are off and running towards the goal of remission.
Dr. Abe says that it will be a marathon and not a sprint.
We finally feel like we have least covered the first leg of the race and that is an optimistic glimmer of hope we welcome into our lives.

November 7, 2009 - Day 201

2009-11-07T19:22:00.000-05:00

I have to be quick here, we are having internet connection problems and I will probably lose it at any moment.
There will be a Sunday post as soon as Comcast can get us up and running reliably.
Thanks,
Doug

November 6, 2009 - Day 200

2009-11-06T22:43:00.000-05:00

To Anonymous who left a comment yesterday - If you want to contact me, please write to me at dougvsamy@gmail.com. I have no way to answer the questions you asked as I cannot reply to your comment when you are logged in as Anonymous.
I would be happy to talk about Amy with you at any time. That is the purpose of this blog, to help spread awareness about amyloidosis and to share the ride with anyone who wants to jump on the bandwagon with Jo Ann and me.
I don't have much to report today as all seems to be going pretty well for me at this hour.
I haven't experienced the fatigue that has defined the past couple of weeks after the Velcade infusion, so my body is either getting used to it or I just lucked out.
Next week will be the end of this round of Velcade/Dex and then I get a chemo holiday for one week to let my body recover. I can't wait to see what it will be like to have a week without that poison coursing through my body.
I may be on top of the world or I may be trolling its depths. Who the hell knows what to expect from Amy? I wonder if she will try and attack me while I take a little R&R?
I woke up last night about 2:30 AM to the sound of my screaming voice brought on by nightmares that interrupted an otherwise sound sleep.
Where they came from I don't know but they all featured Amy in one form or another.
She has now invaded my sleep, determined to steal even that from me.
I am finding more reasons to resent her and her intrusion into my life every single day and I wish she would just leave us alone.

November 5, 2009 - Day 199

2009-11-05T23:00:00.001-05:00

It has now been almost seven months since Jo Ann and I were first introduced to our new world of Amyloidosis.
In those seven months, we have acquired a wealth of information and understanding that we would gladly have never been privy to.
I never had any particular interest in edema and motility and I know that she has never shown any partiality to INR testing and Light Chain Assay tests let alone the light chains themselves.
It was almost seven months ago that our world was turned upside down and shaken beyond recognition, never to be the same again, never to see fulfillment of many dreams that we had for it.
It has been almost seven months of learning and developing a new relationship, she as a caregiver and protector and me as a patient, sometimes helpless at best.
These months have taught us to never take the next day for granted because there is no sure thing come tomorrow morning. What happens on Tuesday cannot be used to measure Wednesday. Sunday? Forget about it. Every day must be taken for what it brings, hour by hour some times.
During the past months we have been taught an immeasurable lesson about bureaucracy whether it be insurance companies, the Social Security Administration or those heartless credit card companies.
We have learned about people like Warren who would give us the shirt off his back and we have learned about people who won't give you the time of day.
We have learned about drugs that we never knew existed, how to pronounce their names fluently, what the possible side effects are and what interactions they may have with another.
We have learned about (and from) people all over this world who are fighting AMY alongside us.
We have shared their happiness when the dark turned to light for them and we have mourned them when they lost their fight.
The biggest lesson that I think we have learned is that life is precious and that too many people take it for granted, not believing the old adage about living everyday like it could be your last.
We have no idea at this point where we are heading with my condition.
Due to the damage that my heart has sustained from this disease, I have to take blood thinners to help prevent strokes and heart attacks. What this means to our future, we have no idea. If something happens, we'll deal with it and if not, so much the better. Will I wake up tomorrow and the next day? We have no idea, so we can't look back, we must look forward.
The remission rate for this disease only falls into the 25-30% range so the prognosis isn't that great.
It is for this reason that we are learning to look forward to each day and find something good to take away from it, whether it is simply going for a car ride or that rarest of occasions these days, a trip to a restaurant.
AMY has certainly humbled us and taught us just how vulnerable we human beings are, whether we want to believe that or not.
This is a lesson to be learned and taken to heart.

November 4, 2009 - Day 198

2009-11-04T22:42:00.000-05:00

A quiet day on this end except that the Velcade side effects are in full force.
I slept most of the day and am now fighting the motility problem that first surfaced during Round 1 of the Velcade/Dex regimen.
It seems that this will be the most consistent side effect that I will experience, at least for the time being.
As long as I can stay properly hydrayted and continue with the Erythromycin and laxatives, hopefully it won't get out of hand and land me in the hospital again.
Anyway, that is the medical report for the day.
There isn't much else to report but the holidays are coming and that should provide fodder for future discussion.
The musical selection for tonight is Little Feat recorded in San Francisco in September 11, 1988.

November 3, 2009 - Day 197

2009-11-03T23:40:00.000-05:00

On October 19 and 20, in my posts, I mentioned an individual who was struggling fiercely with Amy.
I am ecstatic to report that he has left the hospital, a little worse for the wear, but alive and kicking, still among us, living to fight Amy another day.
I talk about the bumps in the road, but as I said to Tim, he ran dead into one of those spring thaw, all the way to China potholes that are so common in the north country.
This is what this disease seems to be all about (or not maybe).
You just never know from day to day what to expect, what kind of surprise each day will bring.
Sometimes it is minor like a little constipation or edema and the next day it is double pneumonia like Tim experienced.
The one thing that you can count on with Amy is that you can't count on anything.
One minute you are on top of the world and the next minute (literally) you find yourself flat on you back, unable to function. Give it a couple of minutes and you are good to go again.
This is what I find so damn frustrating about Amy.
Some nights you go to sleep wondering if you will wake up and some nights you hope that you don't.
Turn your back on her for an instant and she will sucker punch you, face her head on and she will just blatantly punch you in the nose anyway.
She'll thumb her nose at you as you struggle with the side effects of your treatment regimen.
Another problem is that this is such a personalized disease that anecdoctal evidence means very little when trying to anticipate what is going to happen to you.
Two people can take the same drug with completely different results, some good, some bad.
What works for one may not work for the other.
My case is proof of this. Some people can find a state of remission with Melphalan but it did nothing for me. Some may start with Velcade and end up with Melphalan as their magic elixir.
The Grand Experiment continues every day in the world of amyloidosis.
This up and down adventure gets depressing after a while and makes you question the fight sometimes, but you just have to keep on truckin' everyday.
This is what we do.
If we offend you or piss you off, please understand our frustration.
You don't have to excuse us or pretend we haven't hurt you, give it right back, make us think about what we have done, but try to understand our frustration and our inability to deal with it sometimes.
This is all we can and will ask for.

November 2, 2009 - Day 196

2009-11-02T20:31:00.002-05:00

Today was Dose 3, Round 2 of my Velcade/Dexamethasone.
This is significant because I have never made it through more than 2 doses and the one time that I did, it put me in the hospital.
I feel pretty good today, the fatigue seemed to have abated when I woke up this morning and that was uplifting in itself.
That gave us a positive outlook on the day and what may follow.
My CBC blood work was good when Dr. Abe tested today, so the decision was made to move forward as if my meltdown the last time was just an aberration.
My blood pressure was back up in the normal range which was a welcome piece of news and my white blood count had moved back into the normal range along with my platelets.
Today was one of those small victory days that we hope for and look forward to achieving.
Tonight will be one of those long lonely nights due to the dex working its magic but Tuesday nights are now like an old friend who asked for somewhere to crash and then never left.
I get to stay up all night, do some reading, catch up on delinquet replies to emails, watch every episode of DIY and HGTV that I haven't seen and watch the moon rise and set.
The weather is nice so I will combine the music and moon activities by sitting out on the patio during the wee hours of Monday night and Tuesday morning.
As far as the reading goes, I'll plod through a few more pages of "We Were Soldiers Once...And Young" and then go to the Kindle bookstore and pickup something on the lighter side.
Such is the night of a dex junkie.
I apologize to Annonymous who left a comment on Day 193 October 30.
I did not mean to imply that I would gladly pass this off to anyone else, although there might be someone in the Mideast and maybe North Korea that I might consider for the honor.
No, this is my cross to bear alone with the help of Jo Ann and my friends.
That letter was wishful thinking.
It was hopeful thinking even though I don't expect any kind of positive reply from AMY.
Tonights musical selection will be disc 2 of "Don't Let Go" by the Jerry Garcia Band recorded at the Orpheum Theater, San Francisco in May of 1976.

November 1, 2009 - Day 195

2009-11-01T21:53:00.000-05:00

Good Evening.
I had to take yesterday off due to fatigue.
It was a day when every step and every action required preparation in order to achieve the goal.
I had to think out every action, counting the steps, planning the moves.
Getting in and out of the bed is a chore that I don't even care to do right now.
I am told that this is a side effect of the Velcade for some people and that it may be cumulative.
I can't even imagine it being much worse than it has been the last couple of days.
I keep telling myself that I am just catching up on 55 years of sleep deprivation, but somehow I know that I am just kidding myself.
We have finally reached the point I guess where I am incapable of functioning in a normal manner and require help with 75% of what I do these days.
I can get about halfway through cooking myself some breakfast and I run out of steam. A simple lunch I can usually handle, as long as I don't have to stand too much.
Dinner, forget about it. I can get my own water and that is about it.
All very hard to accept and deal with.
This disease (and I guess most others) turns you into a different person, changes the way you operate, makes you reevaluate your abilities.
Mainly, it shows you just how vulnerable you really are.
I feel as defenseless as a newborn right now.
There are mornings that I wake up in a panic if Jo Ann isn't close at hand.
Some mornings, I need help with a task as simple as getting dressed.
Take a shower and dry myself, forget about it.
Making sure I get fed on a regular basis, Jo tracks that.
I don't like feeling suseptible, at the mercy of the world and its big bad ways.
I have always been able to control my own destiny, make my own decisions whether they were right or wrong.
This ability has been taken from me by AMY and the stranglehold she has on my health right now.
She rules my days, she sets my agenda, she tells me what I can and can't do.
Right now, she is the boss of me and I want her to leave me alone.

October 30, 2009 - Day 193

2009-10-30T22:36:00.000-04:00

Dear AMY,
Sorry dear, but I no longer want to continue my relationship with you.
When we first met, I thought that you were an innocent nuisance that I could incorporate into my everyday life.
However, as time has gone on, I have seen you for who you really are.
You are nothing more than a selfish bitch that cares little about the destruction and death that you leave in your wake.
You are an insidious and odious force that does not deserve a place in our world.
You don't care who you hurt as you steal the lives of husbands and wives, brothers and sisters, friends and neighbors.
The swath of destruction you leave in your wake brings you no pause.
I think that it is time for you and your sideshow of edema and kidney failure and heart failure and all of their relatives to move on, to torture elsewhere.
It is time for you to go back to the hell you came from and allow us to live in peace.
You have taken enough spoils for any war.
Be satisfied with what you have taken and leave us the rest, let us rest.
Doug

October 29, 2009 - Day 192

2009-10-29T22:55:00.002-04:00

I'm a little tired today, but feel as well as can be expected for someone with amyloidsosis.
One week ago I was all beat up, but today is not too bad. Hopefully this trend will continue as we move along through my treatment.
I received a letter today from a gentleman who was recently diagnosed with Primary Amyloidosis with cardiac and GI involvement which is the same diagnosis that I have.
In his letter, he spoke of the risks of radical treatment (Autonomous Stem Cell Transplantation with a regime of high dosage chemo) and also of the life expectancy statistics for people who have been assigned to tangle with Amy, neither of which paint very brightly colored pictures.
This letter brought me back down to earth from the cloud I have been floating on.
It reminded me that this is not fun and games. We are not dealing with some minor and curable nuisance here.
A couple of pills killing a virus or knocking out a fungal infection is not the order of the day with amyloidosis.
Everyone with this disease faces problems beyond just having some rogue proteins floating around in their bloodstream.
For some, their heart may be seriously compromised and for others, the prospect of a kidney or liver transplant may loom large.
This is not a disease that you cure and then go home from.
It drags behind it baggage that must be dealt with once your FLCs are under control and you have your certificate of remission, provided you are lucky enough to get one.
The reality of this disease is that AMY is most likely going to win the war, even if you win the battle.
She is going to fight you all the way and she has more weapons than you do.
You can fight as valiantly as you want, but eventually you will most likely be waving the white flag.
Unfortunately, there are alot more memoriams posted than there are survivor stories to read, especially for those with major organ involvement.
I apologize for taking the walk down this road tonight, but every once in a while it needs to be taken.
It needs to be taken so that people become aware of just how devastating this so called insidious disease really is.
It needs to be taken so that the alarm is sounded and it receives the respect that the more vogue and hip diseases already have.
It needs to be taken so that people will organize fundraisers featuring thousands of people, raising millions of dollars to find a cure.
It needs to be taken so that those of us with these orphan diseases don't feel like we are invisible.
It needs to be taken so that health care professionals think of AMY when confronted by someone with a mysterious health history.
It needs to be taken so that people understand what it is like to be in a hospital full of health care workers who can't pronounce the word amyloidosis, let alone tell you anything about it, while they provide your health care.
It needs to be taken so that you understand just how lonely it can feel to be on the outside looking in.
I have been told to keep a positive attitude because that is half the battle, that miracles do happen, that everything will be alright, that I shouldn't have this negative outlook and that I don't look sick.
Well guess what, I am sick, a positive attitude has nothing to do with whether or not my chemo works, I have no idea about miracles, I consider my outlook to be realistic not negative and everything is not going to be alright.
This is a fight to the finish and that is what I intend to do.
I know that it will probably get ugly before it is over, but ugly is okay (builds character I have been told).
The hand has been dealt to me and I am playing stud with no draw cards, take what you have and bet with it.
Hopefully when I turn my cards over, there will be royal flush staring back at me.

October 28, 2009 - Day 191

2009-10-28T23:03:00.002-04:00

History (last Wednesday) did not repeat itself fully today, but it wasn't too bad.
I did not experience the manic energy and attitude of last Wednesday, but for the most part it was a pretty up kind of day.
I was able to spend a major part of the day dealing with insurance issues which I think can be as detrimental to your health as any disease could be.
A quick nap in the afternoon and I was good to go for a take-away rib dinner at our house with Jo Ann's cousin Kathy and her husband Hank.
I don't know if the side effects of Velcade will be cumulative or whether my body is going to learn to tolerate it better. That would be the ideal situation as far as I am concerned.
If every day was like today, I could learn to live with that, but I doubt it is going to be that way.
The edema has returned slightly. Strange as it may sound, that is a good sign because it means that I have returned myself to a fairly hydrated position.
Funny thing isn't it, I take diuretics to prevent edema, but when it is gone, I have created a new problem and look forward to its return.
The sleep situation last night was encouraging.
Computers and TVs off early, a little Bob Marley and I was good to go, didn't even make it through the whole show before falling asleep.
I slept for about 4 hours straight, woke up for a few minutes and went back to sleep for another 3 hours, until Jo got up to go to the gym.
This was a real breakthrough in sleep for me. Imagine that, 7 hours, not unbroken, but 7 hours none the less.
These are the things that I get excited about these days, little victories that mean alot.
Ah yes, the ups and downs of AMY.
The musical selection for tonight's sleep is "American Beauty" by the Grateful Dead.

October 27, 2009 - Day 190

2009-10-27T21:23:00.000-04:00

Yesterday's Velcade/Dex infusion kept me up through the night and kept me down all day today.
Last night, I caught up on some reading, finishing a very interesting and enjoyable book titled " Soul of a Dog" by Jon Katz in which he explores the question of whether dogs and animals have what we would consider a soul or free will. He uses the animals on his farm, Bedlam Farm, in upstate New York as the examples of behavior he considers in his hypothesis. It is an easy read and definitely recommended for any pet owner whether it be dog or cat or donkey.
As long as I was awake and the only thing on TV was hucksters telling me how to make internet millions for only 3 easy payments of $78.78, I started a new book that my cousin Jim from Chicago gave me when he was here last week.
This book is "We Were Soldiers Once...And Young" by Lt. General Harold G. Moore (Ret.) and Joseph L. Galloway.
This book chronicles one of most savage and significant battles of the Viet Nam War which took place in November of 1965 at Ia Drang in the Drang Valley of Viet Nam.
This book has been called "...the best account of infantry combat...and the most significant book to come out of the Viet Nam War."
It is definitely not the easy read that "Soul of a Dog" was, but is spell binding in the detail and the emotion that it evokes.
This one may take a while to finish as the detail and characters are so thoroughly illustrated for the reader.
Back to the medical front, the chemo is kicking my ass right now, but if history repeats (last week), tomorrow may be a fantastic day or at least a decent one.
The next couple of days will also tell the tale as to whether the Velcade is going to cause trouble with my bowels again. If it doesn't, we may have crossed that bridge and the treatments can continue as planned.
The edema in my legs has completely disappeared which is good on one hand, but is a sign of problems on the other.
My body seems to be low on fluids and is causing me to have low blood pressure which had not been a problem until after my stay in the hospital.
I am drinking copious amounts of water and juice and cutting back on the diuretics in an attempt to get hydrated again.
I never thought that I would say this, but a little edema might not be such a bad thing, at least it would be a signal that I had plenty of fluid in my body.
Yes, the day to day twists and turns of Amyloidosis.
The musical choice for tonight's attempt at sleep will be a Bob Marley concert recorded October 6, 1976 in cheery old London. A very mellow show to be sure and one that should help ease me into blissful unconsciousness.

October 26, 2009 - Day 189

2009-10-26T21:03:00.000-04:00

sleep (from MSN Encarta)
noun
Definition:
1. state of not being awake: a state of partial or full unconsciousness in people and animals, during which voluntary functions are suspended and the body rests and restores itself, or a period spent in this state
2. state resembling sleep: any state that is inactive or dormant, like sleep
3. (literary) same as death (sense 1) (also euphemistic)
verb (past and past participle slept [ slept ], present participle sleep·ing, 3rd person present singular sleeps)
Definition:
1. intransitive verb be in state of sleep: to be in or go into a state of sleep
2. transitive verb spend time in sleep: to spend a period of time sleeping
We slept the night in a hotel.
3. transitive verb provide beds for people: to provide sleeping accommodations for a particular number of people
The yacht sleeps eight.
4. intransitive verb be inactive: to be in an inactive or dormant state
city that never sleeps
5. intransitive verb be dead: to be dead ( literary ) ( also euphemistic )
He sleeps in the bosom of Abraham. (If you live in New York, how about "He sleeps with the fishes?")

Ah yes, that state of natural unconsciousness when the world generally passes you by without the headaches and hassles encountered during the waking hours.
Sleep time, those hours when you can forget your troubles and spend some peaceful hours with your thoughts and fantasies.
Who doesn't relish a few hours of downtime to recharge and refresh?
What else compares to sleep that doesn't cost you an arm and a leg?
This is my number one problem right now and the majority of nights, it is mostly my fault due to violation of every accepted good sleep practice.
I stay up late, ditzing around on my laptop, keeping my mind in overdrive.
I have the television on in the bedroom (usually tuned to HGTV or the Food Network).
I spend way too much time in the bed/bedroom. My days need to be spent at my desk or some other area of the house.
My sleep schedule is all over the place, some nights I go to bed at midnight, other nights it may be 2AM or 3AM before I try and shut down. A regular schedule is important to establish good sleep habits and that I do not have.
Sleep was a topic of discussion today at Dr. Abe's office and I was gently chided for my habits by Justin, but she is right.
So now it is up to me to do the right thing and stop complaining about not being able to sleep.
If I can just follow the guidelines, sleep should become a habit rather than a rare event in my life.
Sleep will not only be beneficial to my health, but I can assure you that it will do wonders for Jo Ann because I won't be disturbing her.
Unfortunately, tonight will not be the night to turn over a new leaf.
Today was a Velcade/Dex day and there will have to be exceptions to this rule for those Dexamethasone days when nothing will bring sleep.
Tomorrow night then.
Today was Round 2, Dose 2 of the Velcade/Dexamethasone regimen that caused so much trouble a couple of weeks ago.
We have added the Erythromycin (the Motillium has not arrived from Canada yet) and Senna to my drug list in the hope that they will keep everything moving and we won't have a repeat of the JFK visit.
Whether the side effects will rear their ugly heads again is anybody's guess at this point.
We are hoping they do not because there have been enough setbacks in my treatment and I would like to move forward by increasing the dosage and frequency.
I feel pretty good tonight but I know that it will be a long as the Dex works its magic on me.
Plenty of time to plan my strategy for learning to sleep properly.

October 25, 2009 - Day 188

2009-10-25T23:45:00.000-04:00

Tomorrow is Velcade/Dex day, dose two of round two.
It seems like I have just rejoined the human race to some extent and here we go again.
The chemo brain seems to have lifted this evening and now we jump right back into the fray.
Chemo fog or chemo brain as it is sometimes known is a poorly understood but very real phenomenon, cognitive impairment secondary to chemotherapy can affect memory, attention, and problem-solving ability.
It was first identified in the 1980s, when breast cancer patients reported difficulties with cognition during and after chemotherapy. (Credit to nursingcenter.com for this)
There are some chemo concoctions that can cross what is known as the blood-brain barrier, meaning that the drug actually reaches the brain. Studies have shown that these types of chemo can cause physical damage to neurons in the cerebral cortex.
Although Velcade has not been shown to cross the blood-brain barrier, the fatigue caused by its administration still puts me into the fog I believe.
Personally, I find that it leaves me just a little disconnected from the action around me, just one step behind the rest of the world.
I often feel a little helpless and frustrated, especially when taken together with the emotions involved in fighting the disease that I have.
I find that the after effects of the chemo can kill my interest in many things that I used to do.
For example, I thought that the down time I knew was coming would be an opportunity to catch up on reading all the books that have recently piqued my interest, but I find it difficult to do when beset by the malaise brought on by the chemo and the cornucopia of ancillary drugs that I take every day.
I don't see any way that loading your body up with several different drugs over an extended period of time is not going to cause an imbalance that will affect you mentally and physically.
Many of the drugs that we take are only intended for short term use, but in the case of my type of disease, they may be required long term in order to provide effective treatment.
At some point, the cumulative effects are bound to show themselves.
As I progress through the treatment program, I am learning to deal with this aspect a little more each week.
I know for instance that Monday (chemo day), Tuesday (high on the Dex) and Wednesday will be decent days and that Thursday, Friday and Saturday will be pretty lousy, so we just don't plan anything for these days. Sunday for the most part will be an up day.
This is how we live when confronted by AMY, from day to day.
Just another illustration of how we learn as the Grand Experiment evolves day to day.

October 24, 2009 - Day 187

2009-10-25T00:28:00.000-04:00

I have heard about it from caregivers over and over, but never from patients.
I wanted to believe that it would not happen to me.
It is a concept that I found impossible to fathom.
However, I feel myself slipping a little more as each day passes by.
What I am talking about is the will and the drive to keep on going and how it can be lost when you are living with AMY or one of her relatives everyday.
Everyday, day in and day out, it consumes your every fiber, your every thought.
It is a parasite that bores holes right through your very soul.
It consumes your humanity and takes it from you, casting it to the side.
It steals from you everything that you have worked for all your life.
She takes your dreams and crumples them.
Every movement has become measured and deliberate, there is no flow in my life anymore.
Every little aspect of daily life drags along, planned and thought out with detail before attempting.
Just getting to the dinner table requires summoning up the courage to cross the house and sit down with the family.
I haven't given up on beating this thing but I find myself slipping out of real life a little more each day.
I find myself sliding into another world where I am alone with my drugs and my side effects and my crazy thoughts.
My family and friends stand close to me but they cannot understand what I am thinking and feeling right now.
The only person who has any idea right now of what I am going through is Jo Ann and that is because her life has been turned upside down and inside out like mine.
She will help keep me somewhat grounded.
Thank goodness I have her by my side.
I feel myself rambling right now and losing a cohesive train of thought (there are just so many of them).
It is time to stop and see what tomorrow brings.
Goodnight.

October 23, 2009 - Day 186

2009-10-23T21:27:00.000-04:00

I don't really know where to start with this post as nothing has changed since yesterday except that I am getting depressed about this fight as it drags on and on and my health does not seem to be improving.
I have barely slept since my infusion last Monday and it has started to really wear on my attitude and outlook and nothing seems to help.
The Ativan last night didn't do a bit of good which tells me that it is probably time to take a break from it, as it has lost its effectiveness, which commonly happens with long term use.
I know that many of my posts lately have been on the downside lately, but that is the point I am reaching.
Life has become nothing more than taking pills, dragging myself around the house, lying around in bed and feeling crappy all the time. There just is never any letup in the routine.
The reality of a long term or chronic disease is not a pretty one by any means.
There are times when you can deal with it easily and then there are days when you just wish that it would play itself out and that it would reach its final conclusion.
Spending all of your time in bed, feeling lousy, never knowing what the next day will bring is not a very positive quality of life.
That is all I want right now, some sort of decent quality of life.
I am being a whiny patient I guess, but I am sick and tired of being sick and tired.
Give me just a little break in the action.
Give me and my family a few moments of peace and well being, that is all we are asking for.

October 22, 2009 - Day 185

2009-10-22T20:02:00.000-04:00

I knew that I would pay for yesterday and I am.
The fatigue that I feel right now is numbing and all I want to do is sleep. Unfortunately, physical fatigue does not always go hand in hand with mental fatigue.
My mind is still racing along at a mile a minute but my body is at a standstill.
It is nothing that the miracle drug, Ativan, can't cure in the short term.
I know that I am supposed to use the Ativan for chemo nausea, but since I don't get nauseous from the Velcade, I choose to take it for its antianxiety properties and it works quite well.
With that said, this is a short night and I am going to try and sleep early.
Good Night or Good Morning wherever you may be.

October 21, 2009 - Day 184

2009-10-21T22:59:00.002-04:00

Today was one of those high points on the rollercoaster ride that we all look forward to.
It was an opportunity to seize a day and do something with it, although I will probably pay for it tomorrow.
Wednesday was a day to feel a little bit human again and ignore what Jo Ann and I are going through right now, to do some of the things that normal couples do together.
The weather in South Florida has finally broken for the most part and started to give us those beautiful, sunny, low to mid 70s days, without the humidity and sweat we have dealt with all summer. It would seem that Fall has finally fell.
I woke up late to the sounds of the electricians sawing some holes in the walls, finishing up their work and getting our house in pretty good working order. My thanks to Gus and Petrus who were thoroughly professional in the performance of their work. My thanks also go out to Jim McConchie, the owner of Elcon Electric, Inc. of Pompano Beach, FL for his assistance in getting the work done since I am no longer able to do it myself and to Jim Mathison, Service Manager at Elcon.
If you live in Palm Beach, Broward, or Dade county, they are the only electrical contractor you need to remember (Sorry Chris).
Later in the morning, I was feeling my oats and talked Jo Ann into taking a ride around the neighborhood in the golf cart, something that I had not done in months.
We stopped in at the Pro Shop, did a little visiting and finished our tour of The Hamlet.
It was an absolute joy to be out driving around with Jo in this beautiful weather instead of sitting around the house again while life passed us by.
Much to her surprise (and mine for that matter), I suggested that we go to The Hamlet for dinner with some friends of ours that we had seen earlier in the day on our world tour.
It didn't take much convincing to get her to go, although we were both nervous with anticipation to see if I could pull it off. It has been quite a while since we had done anything like this.
I figured what the hell, I feel pretty good, so why not give it a try. Nothing ventured, nothing gained.
So about 6 PM, Jo helped me get into some regular street clothes and off we went, out to dinner.
It was nice to see people at the club who I had not seen in months due to our isolated lifestyle with AMY.
In a way, it was a snub to her that we were able to sneak out when she wasn't looking and enjoy ourselves with some friends.
The food was good and the company was excellent, so all in all, it was one of the best days since AMY reared her ugly head and took over our lives.
I am sure that I will be punished for overdoing it today, but I don't think that I would have traded it for anything and will do it again if the opportunity presents itself.
Most likely there are some dark days in the future for us, but today was a bright and sunny one that we thoroughly enjoyed.

October 20, 2009 - Day 183

2009-10-20T19:33:00.001-04:00

Dear Susan,
Words cannot express to you how I feel at the moment as I write bleary eyed from tears.
Perhaps it is my own fear and unwllingness to accept the fact that I am probably headed down the same road as your beloved Jack.
This disease has been described as insidious which is defined by Encarta as "gradual and harmful: slowly and subtly harmful or destructive".
I think that this definition is without merit when used to describe AMY.
I don't know what other word there is to describe it, but if there is one, it is still not strong enough to describe the devastation caused and left behind by AMY.
At this point, the word amyloidosis should have more than a medical definition attached to it. Just the word itself should be enough to strike fear in the hearts of men and women.
I have watched people go through various cancers and as crazy as this may sound, they are a walk in the park compared to amyloidosis.
This damn disease just lingers, gives you hope and then steals everything in one fell swoop.
My heart aches (and not just from the amyloid) when I try to imagine the nightmare that you and Jack are living through right now.
AMY just won't let go, she has to squeeze out every last electron of life in order to be satisfied.
I have to close here, this is just too painful to keep discussing (one sided as it is).
Obviously, there is nothing I can do for you guys except offer moral support, so if you need any, my shoulders are still fairly broad, I haven't lost weight everywhere yet.
Please give Jack (and you too) our love and thoughts.
Keep him comfortable and above all else, let him have his dignity in these dark hours.
Doug and Jo Ann

October 19, 2009 - Day 182

2009-10-19T23:50:00.003-04:00

September 14, 2009 - Free Lambda Light Chains - 170.88 mg/L
Kappa/Lambda Ratio - .03
October 19, 2009 - Free Lambda Light Chains - 139.51 mg/L
Kappa/Lambda Ratio - .04
It is exciting news that the numbers are continuing to show a downward trend, but not a reason for celebration yet.
If there is one thing that AMY has taught us, it is that you must be cautiously optimistic when evaluating any news from the battlefront.
As I go along, the numbers must continue to show a drop at each testing in order to prove that the Velcade is doing its job. Next testing will be in three weeks after I finish this round of Velcade/Dex. If they are still dropping, maybe we will have a high five.
Today was a Velcade/Dex day at Dr. Schwarzberg's.
We discussed the future of my treatment plan, how it is going to be managed and what the schedule will be.
In a nutshell, we are going to evaluate week by week to determine the frequency and dosage so as to avoid the type of side effects that landed me in the hospital a couple of weeks ago.
If I am tolerating it well, the frequency will go to three weeks on, one week off and maybe even four weeks if all goes well.
Once again cautious optimism reigns supreme.
The Grand Experiment continues.
We also discussed the use of the Motillium that has been a help to other AMY patients who are having problems with the Velcade causing bowel motility problems.
As I told you in an earlier post, this drug is not available in the United States and must be purchased clandestinely through Canadian mail order pharmacies.
Dr. Abe was not real keen on the idea, for obvious reasons. If it is not FDA approved, there is no way that he can compromise himself by recommending its use. This I understand completely.
I still want to give it a shot based on the experiences of other AMY patients
I am working out the details on how to get my hands on this as quickly as possible.
I have contacted the other patients who told me about it to find out how they have been pulling it off.
I hate to compromise anything, but what the hell am I supposed to do?
He prescribed Erythromycin (500mg) which is an antibiotic that is used off label because of its motility properties.
Erythromycin has its downsides, but in the short term, I need to do whatever I can to avoid the collapse of bowel operation again.
That is it on the health front.
In other news, my online Amyloid Buddy is in the hospital and needs all the support you can give him. His situation is not very promising right now, so say a prayer or light a candle or speak to your favorite wicken and see if you can send him some good karma. Thank you.

October 18, 2009 - Day 181

2009-10-18T20:28:00.001-04:00

The novelty of Amyloidosis has finally worn off.
Days and days of feeling lousy, taking pills, being sick to my stomach for no apparent reason and lying around not being able to do anything no longer holds my interest.
I am ready to move on to something else now.
Based on best guess, the problems that I have experienced over the last couple of days have probably been due to a slight case of dehydration.
The more liquids that I put into myself yesterday, the better I seemed to get. Let's use the word better as a relative term though.
After a long night and a few hours of sleep, I felt like a million bucks this morning and now I am back to a dollar twenty-five.
Most of the day was pretty good and then all of a sudden, late this afternoon, I started to fall apart again and the slide seems to be continuing as the hours wear on.
Tomorrow is a Velcade/Dex day so I can't wait to see what adventure that takes me on. I am almost afraid to find out.
Tomorrow, we get to add insult to injury.
Chronic or long term disease is extremely taxing on the body and the mind and the soul.
Months of inefficient operation and mass quantities of drugs to try and keep it right, cause what seems like an unrecoverable breakdown of the body that never allows for even a couple of minutes of complete relief from the malady.
The mind begins to wander all over and never seems to focus where you want it anymore. It is taken over by negative thoughts of your disease, how you feel at the moment and how little you have to look forward to.
The soul that drives us, that keeps us human, that gives us direction becomes numb. There are many days when I feel like I have lost all of my humanity. I feel like some kind of dark spirit floating around silently staring in on a world that I am no longer part of, because there is no future for me in it anymore. One way or another, this disease is going to remove me from the world that me and my family and my friends have been part of all these years.
I guess that I am depressed about the whole situation, but I don't know how else to react.
The hopes and dreams that I had are all shattered right now, stolen from me by some insidious intruder.
This intruder came at us unannounced and with a vengeance I didn't know was possible.
It has taken us over completely, it rules our life totally.
There really never are moments of relief and escape to look forward to, there is always something in the way. You never are able to get all the ducks in a row, one is always quacking and being ornery.
Sleep, the precious commodity that it has become these days is the only thing that brings any relief at all.
All the while you are sleeping though, AMY is still ripping through you, vandalizing your organs and doing her best impression of the Wicked Witch of the West. So you see, there never really is any escape.
Sorry to be so downbeat, but I just can't find the positives in my situation today.
Yeah, the advancement of medical science, lead by example, help other people in my situation, all crap, I just want to feel good for a day.
I don't have a million dollars, but if it would buy me 24 hours of health and well being, I'd steal it somewhere and I probably wouldn't care who I stole it from. (See, I have lost some of my soul.)
I think that I am getting angry again. It will soon be time for another rant.

October 17, 2009 - Day 180

2009-10-17T22:55:00.000-04:00

I am in pretty rough shape tonight and do not know why.
I can not write a post.
Hopefully tomorrow will be a better day.

October 16, 2009 - Day 179

2009-10-16T22:18:00.000-04:00

Obviously yesterday was not a good day. Why not?
The lack of sleep and always feeling crappy has started taking its toll on me physically and mentally.
There just comes a point at which you want to throw up your hands and surrender.
There are 14 different pills that I shove down my throat at all hours of every day. I am tired of doing it.
There is an infusion of Velcade once a week that knocks me back about 5 steps. I am tired of it.
With the Velcade, I get Dexamethasone (which I used to look forward to). It no longer holds my interest because it keeps me awake for at least 48-60 hours. I am tired of it.
Watch what you eat all the time. I am tired of it.
Talking about Amyloidosis with everyone I come into contact with. Read the blog, I am tired of talking.
Edema and compression stockings. Real easy to get tired of.
Paying medical bills can be tiring when you are sick.
Hearing that your friend with AMY was just admitted to ICU and is not doing well is tiring news.
Reading the posts at the support group and seeing new members every day with new diagnoses will wear you out.
Not being able to take care of some of your own basic needs, tiring for you and your caregiver.
Worrying everyday about how you will feel or what might go wrong, extremely tiring.
These are some of the things that tire me out and make the days difficult.
These are some of the things that make you consider the quality of your life.
These are some of the things that can drain the fight out of you.
These are some of the things that make me wonder how long I want to put up with this.
I haven't given up yet, but I am damned tired.

October 15, 2009 - Day 178

2009-10-15T21:44:00.000-04:00

If you don't have Amyloidosis, thank your God everyday.
If you do have it, you know what I am talking about.
Sorry, that's it for today, a bad one at best.
Will write tomorrow.
Goodnight

October 14, 2009 - Day 177

2009-10-15T00:00:00.004-04:00

Today was my first 24 hours without any Reglan and the differences in my physical well being and psyche are remarkably and frighteningly different.
My body feels half-way decent and my emotional stability has returned almost to normal.
It seems that I must be one of the people who just cannot tolerate this particular drug without getting wacked by the side effects.
When I first wrote about it, I received several emails from other patients who had been on it and had experienced various and sundry problems.
To quote one of them:

"Please don't underestimate the possibility that the Reglan is causing your mental/emotional malaise. (My husband) had a horrible response to this drug mentally and emotionally. He was like new overnight when we decided to discontinue it.We discontinued the drug at a point where he actually began verbalizing whether it was worth the trouble to try and continue to live."

Pretty strong stuff I would say.

It may sound melodramatic but it really hit home when I read this email. I had actually made that exact same statement about continuing on to Jo Ann just a couple of days earlier and was scared to death by the fact that I had thought, let alone said the same thing.
I received a letter from the son of another patient who almost quoted the first letter verbatim, stop the Reglan and you will stop the madness.
It just goes to show you the power of what may seem like a fairly innocuous drug that was designed to relieve nausea and promote motility, but has the potential to produce these powerful side effects.
The lesson to be learned here is that you should never discount your own body when taking a prescription given to you by your doctor. I had been assured during my hospital stay by the doctor, (NOT Dr. Abe) that side effects with Reglan were extremely rare. Well it seems that they are not as rare as he and the pharmaceutical company would like to think.
If you watch television, you may have seen the commercial by one of those ambulance chasing law firms that is seeking "victims" of Reglan for a class action suit.
Rare huh?
Don't get me wrong, this may be a miracle drug for some people, but not so much for others.
This is probably true of just about all the drugs out there, so be careful and be aware whether you are the patient or the caregiver.
Here's the rub in this whole deal.
Several of the people that I heard from concerning the Reglan had switched to a drug called Motillium with great success and absolutely no side effects.
The problem is that it is not FDA approved for sale in the United States so you have to buy it through one of the Canadian mail order pharmacies.
I did some research into why it is not sold in the US and came to find out that it has something to do with the drug transferring itself through a mother's milk and the FDA's opinion that this is not acceptable.
Well guess what? Don't take the drug if you are breast feeding!!
Sometimes you have to wonder what the hell the FDA is thinking when they withhold a drug that could provide relief to many people just because a few may be too ignorant to follow directions.
During my journey with AMY, this issue has come up more than once.
I am glad we have the FDA in place to protect the public from shysters, but come on guys, let's use a little common sense here.
I personally would be willing to take just about anything if the Velcade doesn't do the job we are hoping for. I don't need the protection because I may be dying, so just back off and let us make the decision, with our doctors, as to what we are willing to try in order to gain some relief.
We are not all sheep in this country and we can take care of ourselves. The job of the government is to protect us from foreign invaders and to maintain domestic peace, not tell me that I can't have some drug that might just save my life.
Okay, enough rant for one night, I need to Bing for Canadian mail order phamacies and get my order placed before my bowels shut down again and I spend the next week in the hospital.
Goodnight.

October 13, 2009 - Day 176

2009-10-13T22:25:00.003-04:00

It was 12:50:51 PM EST today when the meter on my blog indicated that there had been 5,000 official visits to the blog since I started keeping track. I think the actual number is around 5,150 but I'll go by the count logged in since I installed the meter.
In addition to the 5,000 visits, there have been 11,286 page views since the meter started keeping track for me.
The numbers are not huge, but for a subject as esoteric as Amyloidosis, I think that alot of people have tuned in at least once or twice.
The 5,000th visit was from Toronto, Ontario and came in via the ISP Rogers Cable. If anyone recognizes them self as being this visitor, please write to me at dougvsamy@gmail.com, I would like to know who you are and why you are reading.
I have created a map in Google Earth on which I have been putting placemarks everytime a new visitor came to the blog. At this point, I have no idea how many locations on the globe are marked, but the maps are a blur of turquoise markers.
There are visitors from all over North and South America, Europe, Asia, Africa, the United Kingdom, Australia, New Zealand and 39 states in the USA.
I have received mail from many readers offering encouragement, asking questions, telling me their story, thanking me for expressing what they want to but can't. There has been mail from caregivers, friends and lovers of patients and from people just as pissed off at AMY as I am.
It has been fun doing this blog and has created direct and indirect diversion that helps me get through the sometimes long days (and nights).
I'll admit that there were days that I just didn't feel like writing and anyone who follows the blog can probably guess what those days are when they come along.
Other than Jo Ann, writing this blog has been the one constant in my life since my diagnosis 176 days ago.
The blog has often been a vehicle for me to sort out my feelings and force myself to look at where I have been, where I am and where I am going.
Sometimes I have gone on tearful rants via the blog and sometimes I have written through tears.
I have made new friends through the blog and for this I am thankful. It helps relieve some of the isolation.
The one thing that I hope I have accomplished is to make someone out there aware of this insidious disease, its effects and its deadly consequences and that they will be the person to save someone from it.
If you have been depressed by the blog, smile a little, it could be worse.
If you have had any questions answered, use that new found knowledge.
If you didn't like my flip attitude now and then, tough luck.
If you can help someone with a chronic disease because of a better understanding from this blog, do it.
If you are a patient like me, remember we stand together against AMY in a battle that few people understand.
If you take nothing else from the blog, remember that life is short and there is little about it that carries any real meaning except for family, friends and lovers and that you should cherish them every single day because you may not have 176 of them left.

October 12, 2009 - Day 175

2009-10-12T20:15:00.001-04:00

~~Today was R2D3 of the latest and greatest Velcade/Dex chemo protocol for me.~~
Oops, scratch that, we are going to do some more experimenting with me and my body (and my psyche as well).
After discussion with Dr. Abe concerning the extreme fatigue that I have been experiencing (a side effect of the Velcade), the decision was made that I am going on a two week cycle with the Velcade/Dex and will take the Dex orally during my weeks off from the Velcade.
He told us that the Velcade fatigue could be cumulative and was to be avoided when possible.
Hell, if I had anymore fatigue than I have experienced over the past few days, I would be comatose by Wednesday and they would have to bury me.
My question was whether or not this change from three doses in a row to two in a row would compromise my treatment and he assures me that it will not, so I defer to the good doc.
We also discussed the Reglan issue and decided to cut back from 30mg/day to 20mg and see if I feel any better. This decision was also met with wild applause from me, the less, the better as far as I am concerned.
So, as I closed with last night, The Grand Experiment continues.
This disease is so annoying because there is no real protocol for it.
Try this pill and if it works, we'll run with it. You say it shut down your bowels, eh? Alright, take this pill and things should start up again. What, that pill makes you violently ill? Okay, try cutting the dose and we will see what happens.
I think that this is the story of just about every patient that I have corresponded with, each story being unique compared to another.
I took Melphalan with no side effects but when Jack took it, he was nauseated 24 hours a day and could not tolerate it.
I take Reglan and am having a hard time with it, but it was the miracle drug for Annette and solved her digestive problems.
Sometimes I feel like a lab rat, the subject of a long and miserable study. I just hope that I am not a member of the cage family that gets the placebo.
This is the life of an amyloidosis patient, full of questions, fear and the great unknown.
I would like to believe that what I am putting me and family through will provide a final thesis and conclusion that produces an honestly won Alfred Nobel Prize for Medicine.

P.S. - There is gentleman named Tim Hornbeck who you may remember from my blog a couple of days ago who is an AMY fighter.
Tim is in an ICU ward tonight fighting double pneumonia and some kidney issues.
I have turned to Tim many times since I started my journey for info and moral support which he freely gave.
Please send him and his wife Connie some energy tonight and pray that his hospital stay is short and sweet.

October 11, 2009 - Day 174

2009-10-11T23:06:00.001-04:00

Tomorrow is R2D3 (Round 2, Dose 3) of my latest Velcade/Dex go around.
This means some of that good old Dexamethasone to give me a little pick-me-up and get me back on an even keel for a couple of days. On the downside, it also means that there will be no sleep tomorrow night, as I will be too wound up from the steroids.
The last couple of weeks since I was discharged from the hospital have been difficult because I have felt very unsettled and have experienced a general feeling of malaise.
The only thing that has changed is the addition of Reglan to my drug regimen and I am almost convinced that it is the culprit.
When I first started the chemo (Melphalan) back in May, Dr. Abe had me taking the Reglan in preparation for what was to come. At that time, I reacted poorly, we pulled it from the regimen and I experienced almost immediate relief.
While I was in the hospital, the gastro docs put me back on it in an attempt to get my bowels working properly and it seemingly has done the job, but apparently with some intolerable side effects.
This will be a point for discussion tomorrow when we meet with Dr. Abe before my chemo.
The Grand Experiment continues.
I need to try and get some sleep in preparation for the next couple of jacked up days, so I bid you goodnight for now.

October 10, 2009 - Day 173

2009-10-10T23:30:00.000-04:00

Fatigue was the word of the day for Saturday.
fa·tigue
noun
Definition:
1. mental or physical exhaustion: extreme tiredness or weariness resulting from physical or mental activity
-weak with fatigue after the long march
2. inability to respond to situation: the temporary inability of somebody to respond to a situation as a result of overexposure or excessive activity ( often used in combination )
-compassion fatigue
3. physiology inability to respond to stimulus: the temporary inability of an organ or body part such as a muscle or nerve cell to respond to a stimulus and function normally after continuous activity or stimulation
-chemo fatigue

The first definition applies to the fatigue caused by just trying to perform everyday functions like walking around or cooking or bathing or taking the dog out. This fatigue will relieve itself with rest and diet. This type of fatigue is avoidable to a certain extent if you are aware of what your limitations are (I have not quite gotten the hang of this yet). This is the kind of fatigue we all experience after a day of hard physical or stressful mental work. It can actually feel pretty good once in a while.
The second type of fatigue is perhaps the hardest to deal with. It is the fatigue that comes after fighting with AMY day in and day out. It comes from taking large quantities of drugs everytime you turn around.
It comes from feeling down and out 24 hours a day. It comes from never knowing on a day to day basis what to expect from your body and mind. It comes from getting poked and prodded and tested incessantly.
You reach a point where you just don't care what goes on around you no matter how it might affect you. You give up on the situation and let it flow wherever it wants. Controlling it is the least of your interests.
It is not that you have given up, it is just that you can't muster the energy to fight and argue with your disease and body anymore. Your abilities have been drained to the point that the engine just seizes up.
The third type of fatigue I believe is entirely physical and is caused by the demands placed on your body and mind by the various and sundry pharmaceuticals that you must injest everyday and the imbalances in normal physiology that result.
Let's face it, under normal healthy coditions, the human body functions quite well without being fed Ativan, Magnesium, Levothyroxine, Reglan, Furosemide, Protonix, Acyclovid, Bactrim, Dexamethasone, Velcade or Melphalan, just to name a few of the drugs I have shoved into my pie hole or veins over the last 6 months.
Processing all of these chemicals is not part of what evolution prepared our organs for. That is why they must be monitored closely when one is taking them because sometimes the liver or kidneys or bowels will just reject their influence and shutdown or suffer irreversible damage. They tell us that enough is enough.
I am not unique to this fatigue, anyone fighting a chronic condition whether it be physical or mental (eventually they melt together) will experience these fatigues and will find ways to either overcome them or succumb to them.
When you are dealing with us, try to understand what they mean to our attitude and ability.
We look forward to the day when the word fatigue is banished from our vocabulary.
I feel like if I am able to beat AMY and return to some sort of normal life, I will never be tired again.
At the very least, you will never hear me complain about being tired or fatigued because I have reached close to the bottom of it now and have a new standard to judge it by.

October 9, 2009 - Day 172

2009-10-09T23:02:00.003-04:00

Today was a pretty good day after getting a decent night of sleep that chased away some of the fatigue and left me somewhat clear headed this morning.
But, as usual, I spent too much time up and about when I should have spent the majority of time laying low. As a consequence, I fell apart about 5 PM.
I know I harp on this everyday, but I still don't get it through my thick skull. I don't learn the lesson about trying to do too much when I should be accumulating and saving whatever strength I muster.
Today was a humbling day because I had to hire an electrician to help us get some things done around the house, projects that I would normally have taken care of myself. AMY is really starting to piss me off by making us spend money to have a stranger do what I have done for the last thirty years. I hope Jeff understands that there will be an on-site supervisor when his men show up next week.
Within a couple of days, this blog will reach the 5,000 visitor mark with over 11,000 pages having been read in the months since I started writing it. Whether these are good numbers for this type of blog or not, I don't know, but I am pretty happy with reaching out to as many people as I have.
There are about 100 consistent readers who tune in every day or every couple of days and catch up on what has been going on.
There are people from almost every state in the USA, coming here from urban areas and from very remote rural locations.
There are readers from Australia, Spain, England, India, Morocco, Croatia, Italy, Africa and other far flung countries of the world.
Here are my questions to you if you care to answer: Why are you reading this blog? Are you a patient? Are you a caregiver? Are you an educator? Do you just have a morbid curiosity? Have you learned anything? What brings you around day after day, week after week?
I would like to know about my audience. I tell you just about everything there is to know about me, let me get to know you too.
You can respond through the comment section at the end of each blog or you can write me at dougvsamy@gmail.com.
Your feedback concerning content, attitude or style would be appreciated.
It has not been easy to write every single day so I would like to know how I am doing or what I could do, in your opinion, to improve things. This would make it easier on some of those days when writing is the farthest thing from my mind.
Thank you for your loyalty and please pass my address on to friends, neighbors and colleagues.
If one person finds something in this blog that saves them or a loved one, it will all be worth it.
Thank you, Doug

October 8, 2009 - Day 171

2009-10-08T21:58:00.000-04:00

Last night I thought that I was on my way back to JFK Medical Center for another session with the gastro doctors.

After a dinner of meatloaf, mashed taters, gravy, vegetables, I started to get the bloated crampy feelings that led to my last stay in the hospital.

I thought that my bowels had shut down again as a result of the Velcade and this did not make me a happy camper (or amyloid patient).

I spent most of the night moaning and groaning and speculating about where I was heading and how disappointing this was becoming.

As the night progressed and I became more uncomfortable, we decided to try and ride out the night, call the doctor in the morning and follow whatever he recommended. It didn't make sense to go off

half-cocked to the emergency room when we knew what the problem was and how it would be dealt with at the hospital.

After keeping Jo Ann awake most of the night, my guts finally calmed down enough that I was able to fall asleep for a couple of hours on the futon in the sunroom and let her get a little shut eye.

When I woke up this morning, I felt halfway decent again.

So what are the lessons learned here and what can be done to avoid this scenario again?

First, no more big meals in the evening. Because of the precarious nature of my digestive system now, several small meals will become the order of the day with a major chow in the early afternoon and just some vegetables and fruit at what is normally dinner time.

Second lesson is that when your body is running on all eight cylinders (or a full battery), you can heap all the abuse that you want on it and it will only sputter now and then. However, when the plugs are fouled you need to pay close attention and coast whenever possible, not straining the engine at all.

Again, this is one of the lessons that I have not learned yet. I still treat myself like nothing is wrong and that I am invincible and can do most anything that I want.

Well, I can't and I need to accept these facts and quit trying.

This journey into the world of Amyloidosis has been fraught with difficulty but it has also been one filled with valuable life lessons that we can all learn from.

October 7, 2009 - Day 170

2009-10-07T20:01:00.002-04:00

I knew that last night would be a long one because of the Dexamethasone that I received during the Velcade IV session and it was.
I was wide awake all night, so I answered mail, finished reading the book on my Kindle and started reading a real book with a jacket and hard covers called "Soul of a Dog" by Jon Katz in which he explores the eternal question of whether animals have some sort of soul or not. I haven't read enough to find out what his final conclusion is, but I think he is going to conclude that an animal's life is primarily about food and shelter and not much else, no matter what traits we as humans want to attribute to them.
Those nights of sleep deprivation caused by the steroids are a great time for catching up on some of the tasks that never get done during the normal course of a day.
Today I am wracked with fatigue but sleep still won't come even with some Ativan because I am just too jacked up from the steroids.
Now the fun comes as I wait for the infamous crash to take place, the infamous crash in which I just go catatonic and become numb to the world around me, a weekly occurrence these days.
The ups and downs of this treatment are just a little hard to bear sometimes because they just never seem to end, there is never a day of escape from it all.
The docs need to figure out a way to give us patients that one day away from it all when we can recoup with a straight head. Wishful thinking, but it ain't going to happen.
I would like to tell you about Tim and Connie Hornbeck, the founders of Secure Harbor.
In April of 2008, Tim was diagnosed (after several months of misdiagnoses) with Primary AL Cardiac Amyloidosis.
Tim chose The Boston University Amyloidosis Treatment and Research Center as the facility he wanted to treat his condition.
While in Boston, they saw for themselves the legendary cost and lack of housing available on both long and short term leases.
Secure Harbor (a 50(c)(3) Ohio non-profit organization) was formed to address this need, providing temporary housing while a family member is undergoing evaluation or treatment at BU and to help create a broader awareness of the symptoms of Amyloidosis.
Through the organization, they have obtained a long term lease on an apartment that is in downtown Boston, just a short distance from BMC.
The apartment is in a beautiful complex known as Church Park and meets all the out-patient requirements for an individual undergoing treatment.
It is truly a god send to have something like this available for families that are most likely already heading toward financial difficulty forced on them by their fight with AMY and uncooperative insurance companies.
There are many families who must compromise the treatment of their patient because they do not have the financial resources required. This organization addresses one of their basic needs in a comfortable, safe and secure setting.
In addition, Secure Harbor is dedicated to spreading the word about AMY by providing information to physicians, raising awareness in the first line of defense against this insidious disease.
Besides Tim and Linda, there is a volunteer staff that maintains the website, makes appointments for the apartment and even greets families when they travel to Boston.
Give them a look, they are a worthy cause to support.

October 6, 2009 - Day 169

2009-10-06T22:08:00.000-04:00

Today was Round 2, Dose 2 of the Velcade/Dex restart after we had been black flagged into the pits two weeks ago with my bad pipes.
All of my systems seem to be in pretty good working order with the addition of the Reglan and Senna to my drug regimen, so if I can get through this round of chemo, maybe we will be able to keep going and chalk the last delay up to just one of those infamous "bumps in the road."
This is assuming that none of the other side effects of the Velcade decide to rear their ugly heads and we don't have to confront them.
The steroids should start kicking in this evening and I'll feel half way decent for a couple of days until the crash comes.
Now that the port surgery is two weeks in the past and I am back on the Warfarin, the bruising and bleeding scrapes are starting to occur again. Everytime I bump some part of my body or scratch too hard, it becomes an ugly proposition. Bandages and anti-bacterial ointments are again the order of the day.
My INR came in today at 1.3 which is not within the threapeutic range, so Dr. Ravitsky is upping the dosage to get me to about the 2.5 mark that we are looking for.
Today's blood work at Dr. Abe's was unremarkable which I was pleased to hear. The only glitch that showed was a low sodium level, but that should be easy enough to correct by diet.
At this point in time, it looks like we are back on the high road, heading toward the peak, but only time will tell.
To paraphrase the Who, "We won't get fooled again."
We have had the rug ripped out from underneath us at too many turns in the past to count on anything anymore.
Until I see those Free Kappa Light Chain numbers drop below 25mg/l and stabilize in the normal range and my Kappa/Lambda ratio hit between 0.26 and 1.65, there will be no celebration or victory dance.
Been there, done that too many times before, only to be slapped by the capricious nature of AMY and her seemingly bottomless bag of tricks.
When I first started treatment using the Melphalan and the numbers dropped dramatically, I thought that I was home free, that I was going to win standing on my head.
How small of me, to think that I was going to beat AMY that easily.
Ego and self-confidence were shatttered when that news came along and I learned a quick lesson about being humble in a fight like this.
Tomorrow is a new day and the Velcade will have had time to distribute itself and start its work on my body.
The next 2 or 3 days are going to tell the tale.
Don't most tales have happy endings?

October 5, 2009 - Day 168

2009-10-05T22:39:00.000-04:00

friend [ frend ] (from MSN Encarta)
noun (plural friends)
Definition:
1. somebody emotionally close: somebody who trusts and is fond of another
I know her, in fact she's a friend of mine.
2. acquaintance: somebody who thinks well of or is on good terms with somebody else
I have a friend at the office who might be able to help out.
3. ally: an ally, or somebody who is not an enemy
You can say what you like about the principal; you're among friends here.
4. advocate of cause: a defender or supporter of a cause, group, or principle
She's no friend of tax-and-spend policies.

We all know what the definition of a friend is, but how many of us really can identify our friends?
How many of us really know who our friends are?
Sadly, if the truth be known, we probably think that we have more friends than we really do.
When the chips are down, who can you count on?
A little adversity and watch the people scatter, friends will be hard to find.
My friend Bob came to visit me this weekend.
He traveled 1000 miles just to spend time sitting around watching television, listening to me bitch and rub my shoulders when I cried.
He could just as easily have stayed home and watched the Colt's game instead of taking the time, making the effort and expending the resources it took to come south to visit with Jo Ann and me.
How much easier would it have been for him to just pick up a telephone and talk instead of putting up with the hassles of air travel just to spend 48 hours in our home?
Hell, I have "friends" who live 5 miles away who don't even call us to see how things are going.
It is unfortunate that it takes something like what we are going through to see behind the curtain and find out who you can and can't count on.
It is too bad that we can get so wrapped up in our daily lives that we lose sight of what really matters in life, that being family and friends.
In the end, that is all we are left with.
When the ravages of time or disease take their final toll, we leave behind nothing of any real consequence except the friends and memories of our lives.
This is all we can hope for and all we should strive for as we go about living every day.
I can not express adequately in words how much it meant to have my friend visit us.
Thanks for coming Bob.

October 4, 2009 - Day 167

2009-10-04T20:47:00.002-04:00

I am tired of edema, Velcade, low salt diets, IVs and doctor's visits, so today the subject is a friend of ours, Jan Ramer who is the Regional Field Veterinary Manager with the Mountain Gorilla Veterinary Project in Rwanda.

Jan, who was living a nice comfortable life as a veterinarian at the Indianapolis Zoo left the security of home, her husband and children to participate in the effort to ensure the survival of the 700 remaining mountain gorillas in the wilds of Africa.
I find her account of the project to be quite a fascinating read and tale to be followed.
It is a story of the survival of a species threatened by the encroachment of civilization and the threats posed by poachers and a naturally dwindling population.
This work by the veterinarians is part of a concerted effort by the governments of Rwanda, Uganda and The Democratic Republic of Congo to save and protect the gorillas.
These governments and their people have come to realize the value of protecting this magnificent species and its value to the human race as a whole.
In addition to their work protecting the gorillas, the Project actively participates in assisting the local villages in maintaining and improving the lives of the locals, helping them with the care of their farm animals and partnering in special projects and educational events.
I invite you to visit Jan's blog for the Project at her Field Blog and enjoy an experience you may not have known existed.

October 3, 2009 - Day 166

2009-10-03T13:42:00.002-04:00

There was no post yesterday due to a meltdown of my brain and body and attitude.
For some reason, I had reached a tipping point and something as simple as pounding down the afternoon allotment of pills pushed me over the edge.
I reached a point where I just didn't care anymore and I became quite vocal about it. The language coming out of my mouth probably would have made a sailor blush.
My body decided that it just didn't want to work either and I felt like I was paralyzed, not even able to move around in my bed.
The simplest of tasks and movements seemed to become impossible.
I felt a malaise and fatigue throughout my body and had no way to deal with it, so I just went catatonic.
I felt like I would rather be dead than go on with this whole affair, that I just couldn't take being sick for one more day.
I didn't care about anyone or anything around me, they could of all disappeared at that moment and it would not have bothered me in the least.
In the back of my mind I knew better, but at the moment that was the emotion that had control of me.
I just couldn't imagine going on like this for one more instant.
I keep wishing for that one day reprieve from pills and sleeplessness and fatigue, but I know that it will not come until we get control of Amy and I have the upper hand again.
Not having this ability or power is what sets me into these moods when they come along.
I am beholden at this point to doctors, poisonous drugs and a disease that is trying to kill me before I kill it.
This is the reality that I must accept and learn to live with.
Yes, my attitude needs to get right also or this struggle will become unbearable.
The power of positive thinking will not help with my cure one iota if I don't have it.
Yesterday will be repeated again and again in the future I am sure.
The trick will be to make sure that it does not become the prevelant attitude I carry with me, that it is just an occasional opportunity to clean some of the dirt and mold out of my soul and start fresh.

October 1, 2009 - Day 164

2009-10-01T21:52:00.001-04:00

I'm back (mostly) after sleeping for about 15 hours with a little break for breakfast, a couple to take pills and one to change the bed clothes.
Not sleeping much exacerbates the lack of energy and stamina that I have these days which only makes acceptance of my condition all the more difficult.
I have never been one to just sit around doing nothing and that is exactly what I have to do right now.
The effects of the disease and the treatment are forcing my body to do just that, even though my mind says otherwise.
I just walked into a half bath we have that has been waiting to be remodeled for several years now and thought to myself, "This is nothing, I could do this in a weekend." Then I slapped myself back to reality when I realized that it takes me a weekend just to walk that far. Not really, but you get the idea.
What was before, is no more.
The long days of physical labor have been replaced by long days of sitting in the bed or the La-Z-Boy, trying to get rid of the edema.
The trips to the hardware store or supply house have been replaced by trips to Quest Diagnosatics to have blood work done.
The visits to job sites to supervise the crews have been replaced by visits to the hematologist or cardiologist to be poked and prodded.
Paperwork is no longer doing monthly billings or job estimates, it is filling out insurance papers and filing away copies of test reports from my doctors.
This is hard to accept.
I don't feel like I am contributing anything to the world around me, just taking from it.
I write my blog and it may help me and a couple of other people but my whole life's work has been centered around tangibles, bricks and mortar so to speak, that I could stand and admire when the installations were complete.
This new lifestyle is completely foreign to me.
However, it must now be accepted as the status quo.
I will never be able to perform on the levels that I did in my previous life and that is the change that I must reconcile myself with.
Perhaps as time goes on it will become easier, but for right now it is damn difficult to accept.

September 30, 2009 - Day 163

2009-09-30T22:20:00.000-04:00

A massive wave of fatigue has beset me.
It may be because I haven't slept at all in the last 40 hours and only for a couple of hours in the last 64.
The effects of the chemo may be partly to blame also, it certainly was last night and most of today.
I am sitting here in a long sleeve shirt, sweat shirt, long pants and my Colt's stocking cap trying to keep warm in the South Florida 88 degree weather, enough clothes to make an Eskimo sweat.
I don't think that I could write anything coherent even if I tried. This seems to be happening more and more as the days tick by and that concerns me.
I will try again tomorrow.
Goodnight for now.

September 29, 2009 - Day 162

2009-09-30T00:59:00.008-04:00

Today, it was back to the Velcade/Dexamethasone regimen.
We are starting all over from square one, so this is the first week of 4 consecutive weeks before a chemo vacation.
We are using 80% of the normal therapeutic Velcade dose to try and avoid the side effects that I experienced on the last go around and 12mg in lieu of 20mg of Dexamethasone to try and control the edema.
I also received 40mg of Furosemide (diuretic) IV in an attempt to clear the edema and my "Bag o' Mag", so I have plenty of crazy compounds coursing through me at the moment.
This was the first time that we used my port since its installation and I can see why they pushed so hard for me to get one installed.
It can be used not only to give me the infusions of poison that will hopefully save me, but it is also used to draw the blood for my testing.
No more needles in the arm, no more big ugly bruises all up and down my forearms.
The use of the port is relatively simple.
This is what it looks like when installed:

The tube leading from the port is connected to the superior vena cava located above the right ventricle of my heart.
The first step is for me to prepare the skin above the port septum by applying a lidocaine/prilocaine cream on the skin about one hour before Jo takes me to The Cancer Center of South Florida to see Doctor Abe.
It is covered with a small square of Saran-Wrap to protect it in preparation for the drive.
Once my drugs are mixed and ready for infusion, Jill who is one of Dr. Abe's infusion nurses, puts on sterile gloves and mask and then swabs the area to sterilize it before the needle is inserted.
She had the rig ready, told me to take a deep breath, counted to three and pushed that sucker (literally) home into the port.
I felt absolutely no pain, just the pressure of her pushing through the skin and the silicone cover of the port.
This shows the components to give you some idea of how it all works together:

Not all of the external components shown above are actually used as you can see in this picture of my chest.

(The incision directly above the needle is the opening that was made to shove the port under my skin last week by Dr. Shapiro).

Once the needle is in place, it is used just like any catheter installed in an arm vein.

Blood comes out and drugs go in, quite simple really.

The IV bag is then connected and we are off to the races.

About half way through the bag, Jill gives me a bolus injection (A bolus injection is one delivered directly to the veins through an intravenous drip allowing a much faster delivery which quickly raises the concentration of the substance in the blood to an effective level) of whatever drug is required.

This is accomplished by connecting a syringe of the drug to an adapter inline with the IV line ahead of the needle.

The bag of saline then continues its drip until finished and I am almost done.

After I have received the meds for the day, lines are disconnected and flushed with a saline solution and I get one last injection of Heparin which is a powerful blood thinner that prevents clots from forming from the blood in the port.

The whole thing is then bandaged up and I am on my way.

Very simple, very easy.

Comparing my port to needles in my arms, I wouldn't trade it now for all the tea in China.

Yes, it was a hassle having the surgery to install the port, but I may need 40 or 50 treatments and I can't imagine going into my veins that many times.

Strange thing, a year ago I wouldn't have traded my 9" Klein high leverage linesman pliers or my Titleist ProV golf balls for all that tea and now here I am letting you keep the tea for a port in my chest to deliver life saving chemotherapy.

What changes a year can bring.

So, that is my port story and I'm sticking to it.

Now we just wait and see how I tolerate the meds and how effective they are in fighting AMY.

If the karma of today holds, I am looking forward to smooth sailing.

P.S. If you have any fears or concerns about having a port installed (which apparently many people do), talk to your doctor, he's the expert. If I can help from the perspective of a patient, feel free to write (dougvsamy@gmail.com) and I will answer questions about my experience and how pleased I am with it.

September 28, 2009 - Day 161

2009-09-29T00:22:00.003-04:00

I wanted to tell you about my (and Jo's) secondary caregiver

His name is Warren West (right, me left) and he has been a godsend for us the past few months.

Warren is a 61 year old carpenter, whose primary occupation in life right now is being the caregiver for his 93 year old mother.

I met Warren a couple of years ago out on the street in the neighborhood and through a mutual interest in music and trading lies about the adventures of our misspent youths, we have become close friends able to talk about just about anything we feel.

He has become our go-to-guy when we need something that we can't get done ourselves.

Warren has taken me to doctors, he has gone grocery shopping, he's changed light bulbs, repaired broken cabinets and the list goes on.

We have come to know that he will be there to help us on a moments notice as long as his mother is taken care of first.

He has shown up with a cake and candles for Jo Ann's birthday when I wasn't able to get it done and he has made us batches of unsalted chicken soup when we were sick.

When I had one of my panic attacks and Jo was miles away at work, he was right there to help me through it.

He takes Jack swimming in his pool and tuckers him out so that we get a peaceful sleep on those nights because we don't have him pacing around the house in the middle of the night. (Just to set the record straight, I have mentioned Jack in previous posts, but never made it clear that Jack is our dog.)

I can't say enough about, nor thank him enough for everything he has done for me and Jo.

In return, we provide him a refuge that he can retreat to when the rigors of taking care of his mom demand that he take a break.

He comes to our house and we sit on the back patio talking all kinds of crap from politics to space exploration.

We give him a much needed intellectual break from the day to day demands of caring for Mrs. West.

What we have developed is a relationship that he, Jo Ann and I use to reestablish our sanity when we feel it slipping away on those days when the funk sets in.

So, for you Warren, here is your shoutout and our sincere and unending thanks for everything that you do for us. Love ya' man, Doug, Jo Ann and Jack.

September 27, 2009 - Day 160

2009-09-27T22:11:00.004-04:00

Sunday and the start of a new week approaches, a week that we have been anticipating, some of the anticipation anxious and some of it a relief.

The anxious part is that the Velcade/Dex will be starting again on Tuesday and we have no idea what to expect in terms of what the side effects may be this time around.
The plan is to adjust the dosage down a little and see how I react. If everything goes according to Hoyle, then we will continue adjusting the dosage until my maximum tolerable level is determined.
After the last go around, the obvious concern will be whether or not my bowels will tolerate the chemo this time or whether I will end up in the hospital again. Let's hope not.
This will be my first time using the BardPort that was installed last week by Dr. Shapiro.
I have never seen this procedure, so it should be quite interesting to have done. I am going to document it with pictures and if they are acceptable, I will post them to show how it all works together.
The relief part is that we are starting treatment again and getting back into the fray with AMY.
I have been at this now for five months and don't feel like much has been accomplished yet.
First, the melphalan failed me and then just when the Velcade gets started, I find that I can't tolerate the normal therapeutic dosage.
When the dosage is reduced, we don't know how effective it will be against AMY, but this is my best shot in the battle, so I will have to take the ammo that I am given and fire it.
This will be a new theatre in the war and I pray that my General is up to the task.

September 26, 2009 - Day 159

2009-09-26T20:26:00.006-04:00

This has been a quiet day around here for us.
Other than my clown feet, there were no medical issues that had to be dealt with.
I spent a good portion of the day sorting through mounds of paperwork and files, putting everything into easily referenced 3 ring binders, so I can find test results, doctors orders, drug info, etc. without digging endlessly.
It is quite amazing how much paper you can generate with a chronic disease.
I think it is imperative that you keep good track of these records in the event they are needed.
Many times, I had seen people in doctor's offices with file folders, now I understand why.
It is difficult to remember everything that has been done or given to you over the course of just a few months.
I would imagine that this documentation will also be helpful when the inevitable confrontation with the insurance company presents itself.
I was watching the Player's Championship while doing my sorting and am happy to report that the old guy, Kenny Perry, is leading by a couple of strokes.
It is nice to see an old guy with a little gut running circles around the young bucks with the chiseled physiques.
My concern for Kenny at this point is the mental aspect and whether he can gather himself tomorrow and go out there with a killer's instinct and finish off the field.
If he can do it, it will make for a great story, hardcore family man makes good on the PGA tour at the ripe old age of 49, well past the prime of most players.
So, give old Kenny a shout out and let's see if he can pull it off.

September 25, 2009 - Day 158

2009-09-26T09:26:00.007-04:00

There was no post on Friday due to fatigue.
I don't know if the past couple of weeks with the stay in the hospital just caught up to me or what, but I didn't seem to be able to move or think yesterday. Most likely, part of it was just my general lack of sleep knocking me back which is usually a once a month occurrence.
When I did think, it wasn't very pleasant anyway.
I was in one of those funks where you start to question whether all this hassle with the pills, and the doctors, and the chemo and the side effects is really any way to live.
It has been so long since I had 24 hours when I felt good that I can't even remember what it was like to be healthy and able-bodied.
I have no recollection of how it felt to jump up out of bed in the morning and get on with the day, doing whatever it was that needed to be done that day and finally crashing peacefully until the next alarm clock rang.
I can't imagine packing the dogs off to the park for a couple of hours of yappy time.
When we go anywhere now, we have a handicap parking permit so that we don't have to walk but a short distance to get to wherever it is we are going.
Hell, it has been months since I walked through a grocery store.
Now, I sit on my back patio and watch the Saturday game come up the 8th fairway instead of being a participant.
This is the life of people with chronic disease and illness as well as their people.
There is an isolation that comes with the territory and it is hard to ignore for very long.
You and your caregiver are partners with whatever it is you are fighting and you find that you pretty much stand alone.
At first, everyone you know is all about being your friend and being supportive, but as the days and months slip away, so do they.
I don't have a problem with this by any means, everyone has their own life to live and I understand this all too well.
All I would like you to remember is that we are still alive and the we do have interests outside of our disease that we would like to talk about.
If you know someone in this position, give them a call, get the rundown and then talk to them like you are out to Sunday brunch, not filling out their bedside hospital chart.
It will do wonders for their attitude and mental health.
While you are at it, don't forget about their caregivers either. Take them out to lunch sometime, sit down with them and have a drink, give them a chance to break away from their responsibility for a little while. God knows, they need it too.

September 24, 2009 - Day 157

2009-09-24T20:35:00.008-04:00

Today was a red letter day of sorts for me and a red letter night for my brother.

Without going into the crude details, it would appear that my digestive system may be back in working order.

We'll give it another day or two before declaring a victory, but it looks like we may have the enemy on the run.

It is amazing how things like this, that you always took for granted, can become such a big deal when you are ill.

The small victories become major milestones in your life.

Just having a bodily function perform properly almost makes you jump for joy, as crazy as that may sound.

The edema continues to hang around with a vengeance and no matter what I try, nothing seems to change.

We'll give this another couple of days also and see if we can't win another small victory.

I will admit that I have not being sticking to anything resembling a low sodium diet the past couple of days so I may be partly to blame for the extreme nature of the condition right now.

Tomorrow will be the start of a concentrated effort to watch salt intake and see if the condition improves at all.

As I said, tonight was a red letter night as well.

It was the Light the Night Walk for the The Leukemia & Lymphoma Society's (LLS) in Cincinnati that my little brother was captaining a company (ILSCO) team in.

I am happy to say that in terms of fundraising, Andy raised 400% more than his original goal and the team overall was at 115%.

His walk was dedicated to Jo Ann's brother who died on September 1 from Lymphoma and as an honor to Jo Ann and me as we battle daily with AMY.

I would like to thank everyone who contributed, even in these difficult economic times, to this effort.

September 23, 2009 - Day 156

2009-09-23T20:56:00.002-04:00

It has been decided that we are not going to restart my Velcade/Dex treatments until next Tuesday.
This will give me a little extra recovery time.
Hopefully, all my innards will be working properly and be ready to get shocked again without any nasty side effects.
The one side effect that looks to be a real problem is the edema.
Even though it has been 11 days since my last Velcade, the swelling in my legs seems almost impossible to control.
We have upped my daily intake of furosemide to 80mg a day and still the fluid retention is kind of staggering to consider every time I look down below my waist.
A friend of mine who is dealing with kidney problems calls it "Clown Feet" and that is a very appropriate description.
Ronald McDonald has nothing on me during these times.
Elevating my legs on a wedge doesn't work and staying off my feet doesn't work, so I will just have to deal with the discomfort.
Grin and bear it as they say.
That seems to be a catch phrase to live by when dealing with AMY, because every day brings a new surprise that you have to try and just shrug off and then move on.

September 22, 2009 - Day 155

2009-09-23T02:07:00.006-04:00

This is Jo Ann, aka Jo, Jo Jo and JoMa.

She is the bedrock that is keeping me on my feet right now.

It is her strength that helps me get through everyday now.

She is my secretary, my chauffeur, my cook, my nurse, my friend and my lover.

She is the center of my universe as we stand together in the battle with AMY.

She gives me the encouragement that I need, even on the darkest of days.

Jo will cry with me and share my pain whenever I need her to.

When I am screwing up, she will let me know.

When she gets frustrated, somehow she manages to always shake it off.

Her strength is legendary, at least to me.

I can't imagine where I would be right now without her, I probably would have given up.

There will never be words in the language to describe the way I feel about her. You can have your Shakespeare and your love sonnets, they are bumbling attempts at a portrayal of how I feel.

All I can offer is a simple thanks and profession to her.

I love you Jo Ann and thank God everyday for having you with me.

Hopefully, we will get to the other side of this dark forest together and you will find some peace and joy in your life again.

September 21, 2009 - Day 154

2009-09-21T18:59:00.002-04:00

Monday was to be a Velcade/Dex day and an opportunity to see how the port actually works and functions.
In fact, I even took a camera with me in order to record the event and the procedure for posterity.
As it turned out though, today was not one of the happier days that we have experienced during this journey with amyloidosis.
After our consult with Dr. Abe (who had spoken with Dr. Levy, the gastroenterologist at the hospital) it was decided to hold off on any chemo infusion until my bowels are in some sort of reasonable working order.
They are of the opinion that the Velcade is affecting the nerves in my digestive system and that if we do not let them recover before administering more chemo, we may end up with permanent damage.
This is disconcerting on two fronts for me.
The first, is that more time is passing without attacking this disease that I am carrying with me 24 hours a day.
Time has always been of the essence when going after AMY and I feel like times a wastin'.
It took so long to get a diagnosis, I was behind the eight ball to begin with, and now, it seems like time is rushing by.
The second concern is the obvious one about my chemo. First it was the Melphalan that quit working for me and now after only two rounds, the Velcade is causing what amounts to serious side effects in terms of the treatment plan.
I can't seem to find a chemo that works for me.
If I can't tolerate the Velcade and the Melphalan doesn't work for me, then what? Where do we go from here?
Maybe I have to look for an experimental trial that is being done somewhere.
Maybe we we try some other drug.
What will the new side effects to deal with?
Will another drug have any effectiveness against AMY?
There are way too many questions right now with too few acceptable answers.
Doctor Schwarzberg is talking about adjusting the dosage of the Velcade in an attempt to make it work for me, but what does that do to the effectiveness?
He doesn't know, there is no way to know without trying.
I get to be a guinea pig again.
It seems that everyone with amyloidosis is an experiment in action.
Maybe that answers the "Why me?" question that we all ask.
Perhaps our ultimate role in this life is help provide the foundation of knowledge and understanding that will save everyone in the future from this sinister disease.
If that is the case, I will accept it.
If not, then I ask "Why me?" again.

September 20, 2009 - Day 153

2009-09-20T16:55:00.003-04:00

Let me tell you, I am going to miss that food at JFK.
As good as it was though, I am glad not to have to eat it anymore.
I was discharged this afternoon about 3 PM and am finally home in my own refuge, ready to take on the next phase of my life with AMY.
I now have a BardPort implanted port with an open ended catheter underneath my chest, connected to the superior vena cava which dumps directly into the right atrium of the heart.
This way, when receiving IVs, the fluids are dispersed more efficiently than if they are fed into some downstream vein.
Tomorrow is Velcade day at Dr. Abe's, so we will get to test the new installation and make sure that it is working properly.
I am still fighting with the motility problem that landed me in the hospital for five days, but the doctors are pretty confident that the Reglan and stool softeners should help regulate the situation.
I have to admit, I met some wonderful people at The JFK Medical Center and I can't thank them enough for the time, consideration and compassion that they showed towards me.
From doctors to shift RNs to PCAs to transport people, everyone was great. My thanks to them.
If this is the way that HCA runs all of their hospitals, we are in pretty good shape with them behind the scenes.
I am pretty tired right now and need to get cleaned up, so I am cutting myself short and will delve a little more deeply into my hospital experience tomorrow.
Goodnight.

September 19, 2009 - Day 152

2009-09-19T07:38:00.007-04:00

I couldn't post on Friday because too much happened and too much didn't happen.
It doesn't seem that we are any closer than we were two days ago to resolving the original problem I came to the hospital about.
I have been injected with, IVed with, and swallowed any number of drugs, pills and potions to see if we can breathe some life into the old gut, but so far, all is quiet.
I have been CAT scanned (with and without contrast), x-rayed and ultra sounded and still don't have much of an idea about what is going on or where this is all headed.
It is not a matter of the doctors not knowing, they keep trying new approaches but nothing seems to do the trick.
Right now we are experimenting with Reglan (although the possible side effects concern me) and if that doesn't work, then we try something else.
Today being Saturday and the holiday, I assume that I will just be left in a maintenance mode to see what happens.
Friday started out like any other Friday, you know, changing IV bags, shooting drugs into the ports on your IV line and being the subject of rounds with the students.
I did receive a visit from Doctor Levy who is the gastro guy and he wrote orders to allow me a soft diet. That was a relief after about 72 hrs. of not eating.
This brings us to the subject of hospital food.
Should you ever have to spend time eating in a hospital, The JFK Medical Center in Lake Worth, FL serves some of the finest cuisine you may encounter.
I have been in hospitals before and practically starved on their gut-busting, gag-inducing, plastic excuses for food, but that is not the case here.
This isn't haute' cuisine by any means, but it is every bit as good as what you would get at your local diner with a complete menu for you to choose from. (I would like to recommend the pumpkin pie with vanilla ice cream, it was tasty). My hats off to the food service.
Around noon, it started to get interesting. Marvin, who is one of Dr. Shapiro's students showed up in my room and wanted to know if I was still ready to have my port installed.
What the heck? Why not? Nothing else seemed to be going right at that point so what could I lose?
A few minutes later, transport showed up and took me to OR prep to get ready.
The preparation process moved along nicely even though the place was packed and an absolute madhouse.
The next thing I knew, I was being rolled on to a table under a large operating light and we were off the races.
The interesting thing is that this procedure is not performed under general anesthesia, but rather a twilight sort of unconsciousness.
All I remember is a couple of sharp jabs at the very beginning, some tugging and pulling during the procedure, and then being rolled off the table and carted down to recovery.
It really is amazing what can be done these days by the doctors. (Now if they could just cure amyloidosis, I would be all set).
The shock came when I returned to my room, Jo Ann was helping me in the bathroom and I caught a sideways glance of my body.
I am one massive bruise from about the breasts to the shoulder blades. How anyone could possibly bruise like that is beyond me, but I am.
There are large deep purple bruises on both of my shoulders and across my pectoral muscle areas, which I assume I will be carrying with me for many months to come.
But at least the port is in now and I won't have to keep getting stuck every Monday when I go for Velcade and blood work.
For now, the job is to get out of the hospital (as good as the food is) and get home.
I guess that this is the beginning of the amyloid story that I have read so many times.
In and out of the hospital with this and that, just keeping the body in some kind of operating condition. That seems to be the way it goes.
I don't know how long that will go on for me though. There is no quality of life in living in a hospital or in constant fear of going there and I refuse to live that way.
I will fight AMY, I will hope for the archangel that will slay her and I will stand my ground for a long time, but eventually enough will be enough.
Don't tell me that this is giving up, it is a personal choice that I will make when the time comes.
It is not one I want to consider, but I am ready for it if necessary.
I believe it to be a realistic one that must be considered and has been, at least in my mind.
Maybe my mind is a little twisted, but then again, so are those amyloid proteins.

September 17, 2009 - Day 150

2009-09-17T12:49:00.011-04:00

Thursday night, sitting here in my room at the JFK Medical Center, dealing with one of those surprises we keep talking about.
Tuesday morning everything was moving along smoothly heading for the port installation on Friday and then, BAM!!, came Tuesday night and Wednesday morning.
I ate breakfast, felt pretty good and as the day progressed, started to feel worse with every passing hour. I was experiencing a bloated feeling and noticed that my abdomen had gotten rather firm.
By early AM Wednesday morning, my abdomen had turned rock hard and I was in a great degree of discomfort, laying in the bed moaning and groaning looking for some relief.
Wednesday morning came along and we called Dr. Schwarzberg who directed us to go to the emergency room at JFK.
After being poked and prodded for a couple of hours, I was admitted to the hospital at the direction of Dr. Abe.
I had a couple of CAT scans and x-rays performed and it was determined that I had developed a blockage that was preventing anything from moving through my digestive syatem.
So here I sit with an IV in my arm, a cardiac monitor attached to my chest and a restricted clear liquid diet until such time as motility returns.
The docs are attempting to get things moving again by adjusting my electrolytes and treating me with Reglan (which I am not so happy about).
The theory here is that between the amyloidosis and the Velcade, my intestinal motility had slowed to such a crawl that the food I was pushing into it wasn't moving on through.
The doctors are telling me that this may take anywhere from 5 to 7 days to resolve itself and that I might as well settle in for the duration.
Just another bump in the road? I would consider it more like one of those late April, knee deep, water filled, hub cap popping pot holes that you hit just a little too fast when you least expect it.
The plus side I guess is that Dr. Shapiro is going to go ahead and put my port in tomorrow as long as I am in the hospital and being monitored.
I have never spent this much time in a hospital but so far so good.
JFK Medical Center seems to be an excellent hospital with a very cooperative and understanding staff.
They have been very good to me and they have a philosophy of not causing the patient any more discomfort than necessary.
I am on a teaching floor and find it quite interesting when the doctors come through each day with their students and we discuss my case. When the doctors ask the students what could be done in terms of diagnosing my condition, if they suggest some kind of invasive test, the doctor will vigorously debate the need for such testing and force the student to defend its validity. The philosophy seems to be that if there is any chance that such a test will not provide anything other than conclusive evidence or cause a change to be made to the treatment plan, why bother? I like this philosophy.
So that is where we stand now.
Right now, I am having one of those moments when I realize just how much this disease steals from me everyday.
My nephew, who I am close to, is getting married this weekend up in Michigan and obviously I will not be attending.
My entire family including my mom, my brothers, my aunts and uncles, cousins and friends will be getting together for some good food and good times, but Jo Jo and I will be sitting in a hospital room drinking my clear liquids instead of some nice cold golden ones.
We don't have many opportunities when the whole family can get together, so this will be one that is sadly missed.
Which brings me to a point.
Do not let pass any opportunity in your life to be with loved ones on these special occasions.
They are too few and far between to pass on and it will leave a hole in your heart if you don't take advantage of them.
So, to Nate and Teresa: May you live a good life together, treat each other with respect, find in each other your best friend, trust explicitly and prove yourselves to be examples of what good people are and how they live their lives.
Love, Uncle Doug

September 16, 2009 - Day 149

2009-09-16T17:20:00.004-04:00

Laying here at JFK Medical Center dictating to JoJo. It appears that due to the effects of the Velcade and the Amyloidosis, my intestines have slowed to a crawl and my bowels are backed up. It was a long morning in the ER, sorting out the problem. I was admitted after a scan of my distended stomach determined that there was some kind of blockage. After endless questions from nurses, medical students, and residents, Dr. Abe came to save the day. The plan is to mix up a cocktail of various drugs to stimulate the bowels to start moving and clear themselves. Hopefully, this will be accomplished within the next day or two so that I can leave the hospital. We also spoke to Dr. Shapiro about having the port put in while I am here. That would be very convenient and much appreciated.
Tune in tomorrow for a new addition of "As The Bowels Turn".

September 15, 2009 - Day 148

2009-09-15T23:17:00.003-04:00

No post tonight.
The Velcade has a hold on me like a dog with a rag toy and is shaking me all around.
Maybe tomorrow.

September 14, 2009 - Day 147

2009-09-14T16:38:00.009-04:00

Dose 2 of Round 1 is now coursing through my veins on its way to find and AMY and inflict its wrath.
I am feeling pretty good about this and eagerly look forward to the first Light Chain ASSAY that we do.
In addition, my 20mg of Dexamethasone is kicking in and I feel slightly human again. Plop, Plop, Fizz, Fizz, Oh what a relief it is! (If you don't get this, then you must be younger than I am).
My port installation has been postponed until Friday due to a death in the surgeon's family. They offered to have someone else do it tomorrow, but I am going to wait. Dr. Cohen comes on the recommendation of Dr. Abe and I don't take that lightly.
As patients, we have come to learn that there are numerous approaches to treating this disease in terms of the drugs used, the dosing schedule, the quantities that we are fed and the ancillary drugs that we take.
We know that each patient is different and as such must be approached from a unique perspective.
Melphalan/Dex does wonders for some people, for me it was a bust.
Velcade/Dex may be the magic potion for others but some may require Revlimid.
Different patient, different approach and perspective.
The idea of different perspective and perception of this disease goes well beyond the clinical diagnosis and treatment plan however.
Everyone of us that is facing this has a different family situation, a different career situation, different beliefs and morals and different capacity to understand, process and deal with the circumstances that surround us.
As such, we need to hear what other people out there are thinking and feeling and wrestling with.
I cannot pretend to understand what is going on in the psyche of a woman who has been married to her husband for 35 years as she watches this insidious intruder take him away.
The 18 year old daughter of a victim tells me how she feels about losing her father, her center, and I cry because I know that I do not have the right words for her. I can only tell her what I know and what I feel. I cannot replace her father for her.
The mother whose husband was robbed from her and her children, what can I say?
I have no children of my own, I can't imagine what it must be like to face a future without him and to teach her kids about what kind of man their father was, to try to pass on the fatherly lessons he left behind to them. Please take the time to read "Paul and Amy's Amyloidosis Blog".
The reason I bring this up is that there are other blogs out there that do come from some of these other perspectives.
I myself tend to take a more technical measured approach to what is happening and being done to me and on more than one occasion have been accused of being flip about it.
Sorry, this is my coping mechanism and I don't see it changing anytime soon.
However, there are people out there that have a completely emotional response and find themselves paralyzed by the day-to-day realities of what they see their loved ones going through.
There are Pollyannas who think that any moment, the good doc is going to come walking through the door with a magic syringe filled with some brew that is going to vanquish AMY from their lives.
There are people who are not well informed and struggle with just trying to figure out what to feel and do.
There are people who fought long nasty battles beside their friends and lovers, who now are trying to put all the shattered pieces back together and formulate a plan to move forward with.
When you read these other blogs and journals, the one thing that you will find common to them all, is the story of human beings fighting with an unseen ogre that has turned their lives upside down.
To this end, I have added a category in the information column of my blog entitled "Blogs I Follow".
I am going to list here other blogs/journals that I have come across in my perusal of the internet that you can read.
Some of them are written by patients, some were completed by caregivers and some are from current caregivers and families.
These blogs are in many cases current, but you will see many that have an end date, but one is just as important as the other in terms of insight.
The pathology of this disease is still unknown.
This holds true for the emotions and fears that we face with it each and everyday.
Only by looking at all sides will we gain an appreciation of what its victims are experiencing, no matter how cursory that understanding may be.

September 13, 2009 - Day 146

2009-09-13T23:30:00.003-04:00

Tomorrow is designated as R1D2 (Round 1 Dose 2) 0f my new Velcade/Dexamethasone treatment protocol.
I start out by getting the IV drip of Dex and saline rolling and then about a half an hour after the drip has been going, Jill who is my infusion nurse,will give me the bolus injection of 1.3 mg/m2 of Velcade via the IV.
The first time I received the Velcade, I expected some kind of warmth or cold or other sensation but there was none.
The Velcade just slipped in quietly with no fanfare and went to work on its seek and destroy mission, to annihilate the base from which AMY operates.
I like it better that way, just be quiet and do your job.
This what we hope the Velcade will do for me.
I am still fatigued from the first go with the Velcade, so I have no clue as to what next week with it will be like.
It may be hard to draw any conclusions because on Tuesday, I have the surgery to install my permanent port for future IVs and blood draws.
I would imagine that the drugs administered for the surgery will give me a skewed perception of what the effects of the Velcade are. Oh well, just another lost week, what else is new?
I do know that I am looking forward to the administration of the steroids tomorrow as they always give me a boost and make me feel somewhat human again for a couple of days.
It is late and tomorrow is a new day, let's see what it brings.

September 12, 2009 - Day 145

2009-09-13T00:18:00.003-04:00

I am sick and I have no frame of reference for it.
I have no past experience that in any way gives me any guidelines for how I should act and live with something like this.
I am trying to make it up as each day presents itself, with whatever challenges it may bring.
Patience has not always been my best virtue and it is starting to show.
I'm tired of getting up early, popping some pills and then doing it all over again several times a day.
I am tired of getting jacked up on steroids for a couple of days, feeling half way decent and then spending the rest of the week in a catatonic crash mode.
I could scream everytime I look at the nutritional information on a package of food to see if its sodium content fits into my diet.
Spending the day in bed with my feet and legs elevated to help ease the edema is getting old real quick.
Everything I do is an effort, whether it be as simple as getting a glass of water from the kitchen or shuffling to the dinner table.
This is all making me tired and when I realize that I am just getting started, I cringe at the thought of this being my life for the next several months or years
Somewhere, I need to find a strength to carry me through.
I think that I am starting to get a little depressed about this journey and just want it over with.
I want a day or two to be able to step away from it and live like a normal human being, eat normal food, not be sick, not get stuck with needles, not talk to a doctor or nurse and not have to ask Jo Ann to do some menial project for me because I just don't have the energy or inclination to do it myself.
There's a long way to go and all I know is that I had better get my act together soon or this journey is going to be a long and unpleasant one.

September 11, 2009 - Day 144

2009-09-11T21:05:00.002-04:00

I almost didn't post anything tonight because of the way I feel physically.
I had put the computer up, gone to bed and fallen asleep.
A couple of minutes ago, I woke up and realized what I had let happen.
What I had done was let AMY beat me in a small contest of will.
The one thing that I have not ignored throughout this whole journey is the commitment I made to writing this journal every single day, whether it was a long drawn out diatribe or a quick "See ya' tomorrow."
Right now, I have very little control over what goes on with me.
The drugs and the disease control most every move I make, but this writing is all mine.
If I choose to ignore it, then they have taken almost everything into their dirty little clutches.
I won't allow this to happen, because if I do, when the next crisis comes along, I may find myself succumbing and giving in without a fight on a battle I can win and I have a funny feeling that there are many more battles to come before this is all over.
So, if you tune in some nights and find me slightly off kilter, off color or just off the wall, you will understand that it may be a night that I have drug myself to my corner, gotten some cut work done, spit in the bucket and with rubber legs supporting me, answered the bell for the next round.
This is a fight for life and I am going to have to pretty battered and bruised before I let the ten count pass me by and throw in the white towel.

September 10, 2009 - Day 143

2009-09-10T22:06:00.003-04:00

Now that a couple of days have passed since my first dose of Velcade, the oft spoken of side effect of fatigue has set in with a vengeance.
I am weary to the soles of my feet.
The experience of many people who take the Velcade is just the opposite in the long term so it must be a matter of getting enough doses before you turn around.
Yesterday was rather enjoyable with the steroid buzz, but today has been a real knuckle dragger.
Could also be that I haven't had but a couple hours of sleep since the Velcade became part of my physiology.
The edema in my legs is worse than ever right now and I haven't been able to shake it all day.
Elevated legs and extra lasiks have not done the trick. I am assuming that the edema is the result of receiving the Dexamethasone (20mg) in my chemo IV rather than taking it orally over three days like I was when I was on the Melphalan regimen.
No big deal though, I have classified the edema as a nuisance for right now as there are other issues that are much more important to deal with.
I had my preop at JFK Medical Center and everything is in order for the installation of my port next Tuesday.
All the papers and waivers are signed, hospital fees are paid in full and I am good to go.
They even gave me a special antibacterial soap that I am supposed to shower with the night before and morning of the installation.
This is an effort on the part of hospitals to help prevent the staph infections that have become so common these days.
The soap comes with very specific instructions on how to shower with it including the use of multiple washcloths for specific areas of the body, wash from the top down and a couple of other rules that are to be followed.
I am now ready to step this fight a couple of notches and try to grab this next skirmish away from AMY after getting a beat down from her in the first go-around.

TOMORROW IS SEPTEMBER 11.
Do not forget the horror of that day and what it has meant to the United States and the world.
Make it a point to display Old Glory in some shape or form around your house whether you support the war effort or not.
This is about being a citizen of the United States of America and a member of the international community.

September 9, 2009 - Day 142

2009-09-09T21:22:00.002-04:00

I made it through the 24 hour probation period without any nausea or other minor side effects, so that is a good sign that I will tolerate the Velcade.
I feel pretty good today after a catatonic weekend, but that is most likely the result of getting my steroid jones fed and satisfied again.
Of course, everything could change tonight or tomorrow or next week or next month.
The lesson about taking this journey one day at a time and to always expect the unexpected has not been lost on us.
There have just been too many times that we have been caught off guard and handed a surprise when we least expected one.
Tomorrow, I have my preop appointment at JFK Hospital to get the tests and clearances for the installation of my port next Tuesday.
Everytime I have an appointment like tomorrow, the reality of what is happening settles in a little more.
You would think that by now I would understand it, but I don't.
It all still seems like just a dream, not unlike Day 1 when I received the call from Boston University with the results of my biopsies.
It still seems like one of those things that happen to someone else, to someone else's family.
Coupled with the death of Jo Ann's brother, it begs for us to wake up and realize that it has been nothing but a ghostly dream.
It isn't a dream though, it is more like a nightmare, the kind that you have early in the morning when you are drifting in and out consciousness and the line between reality and fantasy is so hard to define.
I've pinched myself, left blood stains on the bed from the steroid and warfarin wounds and had enough panic attacks, that I am sure this is for real.
It is not going to stop until the curtain falls on the final scene.
The thing I don't know and won't until it happens, is whether it will be comedy or tragedy.
Unlike a DVD movie where there are alternate endings, this movie will only have one to choose from and we have no control over what it will be.
It's going to be the director who decides this one.
I just hope he prefers light gay endings rather than dramatic lesson laden ones.
My preference would be Robert Stevenson and Mary Poppins rather than Steven Spielberg and Schindler's List.

September 8, 2009 - Day 141

2009-09-08T20:33:00.013-04:00

Today, I was inducted into the Velcade/Dex Lodge No.777, Lake Worth, Florida as a member with all rights and privileges as granted by The Grand Modified Dipeptidyl Boronic Acid himself.
I am being given a new shot at AMY after firing my previous mercenary because he just wasn't tough enough to storm the front lines and put AMY in her place.
The Velcade/Dex squad comes highly recommended by others who have employed them, as well as Dr. Schwarzberg and the doctors at Boston Medical and that is good enough for me.
I will be receiving a 3.5 mg/m² dose of Velcade IV with 20mg Dexamethasone once a week for four weeks, then one week rest and then repeat the schedule for six to eight months depending on what my response is.
This evening everything seems to be going pretty smoothly, but according to my patient information sheet, the minor side effects such as nausea, headaches, fever, diarrhea and constipation, may not occur for 12 to 24 hours after the injection.
We'll just wait and see if maybe I'll be lucky enough to dodge these rubber bullets.
Next up will be monitoring and control of peripheral neuropathy if it starts to affect me .
Peripheral neuropathy, which occurs frequently, is damage to the nerves located just under the skin.
It can cause weakness, tingling, burning, numbness and pain in the hands and feet.
I was given a chart today that I filled in with notes on the current state of affairs. It will be reviewed each week and compared to what I may be experiencing at the time.
Should I start to develop a problem with PN, the dosages and scheduling of the Velcade can be adjusted to help alleviate it as much as possible.
So, here we are, a new day, a new treatment, a new set of challenges to be faced as we confront Amy in our attempt to drive her down.
No one said it would be easy or clearcut and it certainly isn't turning out to be that way.
When I look around the world that we live in, I am stunned by the thresholds that science has brought us to. We can put a man on the moon, we can solve the most complex of mathematical formulas and we can make a loaf of bread last two years.
What we have failed to conquer though, is our lack of understanding of the operation of the human body.
Its nuances continue to confound and befuddle us.
The secrets that we need it to whisper in our ear are held tightly, perhaps never to be revealed.
With all the money and all the research that has been devoted to countless diseases, they still defy our control and continue to plague mankind.
Someday we may just have to accept the fact that there are things we were meant to know and understand and that in some cases, we will have to cast off our collective arrogance and admit defeat.
Mother Nature has proven herself a formidable ally and enemy, depending on her whim.
We need to learn our limitations in dealing with her and strike a compromise that allows a peaceful and fulfilling coexistence.

September 7, 2009 - Day 140

2009-09-07T21:57:00.010-04:00

Tomorrow is V-Day.
In the parlance of the Great World Wars, this stood for Victory in Europe as in VE-Day or Victory in Japan as in VJ-Day.
In my war, it stands for Velcade Day and hopefully in a few months it will mean Victory against AMY Day.
Tuesday, September 8, 2009 will be a day that lives in infamy in my knock-down drag-out with Amyloisdosis.
This is the day that opens a new chapter in the on going battle.
There are going to be many new doors that are thrust open with countless new surprises awaiting around each corner in the corridor as we walk it.
Tomorrow I will be receiving my first dose of Velcade/Dexamethasone and I have no idea what to expect.
I have received many good reports about Velcade and tolerance and a few stories about some of the offensive side effects that it can throw at you.
They are duly noted and filed away in my brain for future reference if needed.
The introduction of the Velcade takes us one step up the ladder of treatment and moves us into a new realm that may introduce some funky side effects like peripheral neuropathy, nausea, decreased platelet levels and low blood pressure among others.
The Melphalan did not cause these problems, but good 'ole Mel is ancient history now anyway.
I won't be having my port placed until next Tuesday so I'll get the first couple of doses the old fashioned way, straight into the vein.
Imagine, a docking station for IV needles just like the one you use for your iPod or laptop computer. What will those wild and crazy medical supply companies think of next?
I have no idea but you can bet it will cost the patient and insurance company, hundreds of percentage points more than it is worth.
I am pretty calm about the whole thing right now but you can be sure that my bottle of Ativan will stay close to me as the witching hour approaches tomorrow.
It is getting late, I need to charge my iPod and MP3 player so I have plenty of music with me for the session.
I will report in as early as I can about what we found when Jo and I peeked over the wall into our new adventure filled world of Amyloidosis treatment.
Arrivederci, baby.

September 6, 2009 - Day 139

2009-09-06T21:18:00.009-04:00

I don't know how many times I have said it or how many times it has been said to me over the past few months, but comparing the fight with AMY to a rollercoaster ride is about as close as you will get to the truth of what it is like.

One moment, you're on the top with the endless landscape stretching out before your eyes and in a New York second, you are staring at the depths of the earth.

The highs will fill you with awe and wonderment and the lows will fill you with absolute dread and despair.

I had spent the last couple of days in lousy shape, finishing up the steroid crash that has become part of my weekly routine, waiting for some normalcy to return, but I just got more and more removed as the days dragged on. This did not seem to be the normal course of events, but what is normal these days?

My little brother came down from Cincinnati and we were out and about some yesterday, taking care of a few errands while we waited for Jo Ann and her family to return from Jeff's funeral in Orlando.

As the hours passed, I knew that I was more tired and unfocused than usual, but passed it off as just overexertion.

Sometime around 6 PM, I climbed into my bed, not able to function in a proper manner, to rest a little and see if I could restore myself to consciousness.

Shortly thereafter, I got so cold, I dressed in sweatshirt, flannel pants, long sleeve shirt and even my Colts stocking cap, trying to warm up. This costume did me absolutely no good as I laid there shivering. At this point, I knew something was amiss.

When Jo came in, she took one look at me, felt my forehead and grabbed a thermometer.

I told her that I couldn't have a fever because I was too cold (already my brain was getting confused).

When the thermometer finally beeped, it showed a temp of 101.8 F which I guess is high and should be dealt with immediately.

I had that spacey, sort of disoriented feeling that one gets when a bad cold or flu is about to open the door and intrude on your life and what crossed my mind was H1N1 flu because it is cropping up down here in South Florida.

Jo called Doc Abe and he said to start taking Tylenol in order to help reduce the the fever, which I promptly did and within 5 or 6 hours, my temp had returned to the normal range and another crisis was averted.

During the fever period, I was quite disoriented, talking all kinds of gibberish about this and that.

The fever passed as quickly as it had come on and things returned to the status quo.

Today, I feel fine, still strung out from the steroids, but okay otherwise.

What caused the fever, who knows? Just another one of those peculiar things that happens when you are filled with all kinds of exotic drugs?

Perhaps it was another one of those unexpected side roads that you stumble down when your body is in a state of chaos which is exactly where I find myself.

So, another little story to file away and bookmark for the next time I need to reference it.

We'll see what tomorrow brings, something new and exciting I am sure.

Never a dull moment around this place, which I know you can relate to.

September 5, 2009 - Day 138

2009-09-05T22:10:00.002-04:00

I won't be posting tonight because I have developed a fever with 101.8 degree temperature.
Hopefully, on Sunday I can do something.
Take care,
Doug

September 4, 2009 - Day 137

2009-09-04T21:52:00.004-04:00

A quiet day around Delray Beach if you don't count the thunderstorms that spent most of the afternoon here.
I went to see Dr. Abe for the bloodwork we need to set the baselines before starting the Velcade on Tuesday, as well as the CBC, PTT/INR for my preop in preparation for the port installation on the 15th.
My brother came to town late last night so we spent the day just kind of goobing around while I continued with my week ending steroid crash.
Nothing much was accomplished today, but there is nothing wrong with an occasional day of unwinding and wasted time.
It gives the brain a little time to recharge and prepare for the challenges of tomorrow.
That is exactly what I am going to do now, sleep and recharge.
Goodnight.

September 3, 2009 - Day 136

2009-09-03T20:25:00.005-04:00

Today is a steroid crash day, so I'll just have to see how this goes.
The anticipation over the start of the new chemo regime is starting to sink in after spending the afternoon making the arrangements to have my port put in.
I'll have to admit that it is a bit unnerving to realize that I just spent 4 months in a treatment that lost its effectiveness and am stepping up to what amounts to a more aggressive program.
The Melphalan routine seemed like it was a walk in the park (except for the steroids) and now I have no idea what to expect with the Velcade.
It seems that many people tolerate it quite well, some have mild problems and others develop some intense side effects.
It works for some and not for others.
I know that we are all just experiments that must be evaluated and tweaked until the right combination of drugs is determined, but it is hard not to question where one is headed when the therapy must be changed so radically.
It's not even the physical effects that weigh on my mind though, it is more about what the long term prognosis of my disease really is.
Perhaps I have not quite come to terms with just how serious this whole affair really is.
When you put a port in your chest, start getting IVs and the Doc explains the possible complications of what you are about to embark on, it gets exponentially more powerful.
This isn't the common cold anymore, it is about life and death.
Given the effectiveness rates of the treatments available, it is more about death than life.
I just have to keep telling myself that I will find my place in that 25-30% of people who achieve the desired level of remission.
Some days that is easy to do, others it is almost impossible.
I know that there are plenty of survivor stories, but there also many memoriams.
I do not intend to be one of the memoriams, I intend to be one of those who can tell other enemies of AMY about beating her senseless.
This is the goal that I am trying to achieve.
The ceremonial coin has been tossed into the air, I have made my call and I now just have to wait until it hits the ground and see if it lands heads or tails.
My brain is getting a little foggy now so I am going to leave it at that.
Goodnight folks.
(Just for the record, I called heads)

September 2, 2009 - Day 135

2009-09-02T22:54:00.013-04:00

Tonight I am violating one of my standards and am throwing out a shameless plug for a cause.
The cause is the Lite the Night Walk for The Leukemia and Lymphoma Society to be held in Cincinnati, Ohio on Thursday, September 24, 2009.
There are several reasons for my turn about in this regard.
The first is the organization that I am asking you to support.
The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. LLS's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Since the first funding in 1954, LLS has awarded more than $600 million in research funding.
Amyloidosis, although technically not a blood cancer, falls under a wide net and LLS has cast theirs over us, providing financial support to people attacked by AMY.
I have personally been blessed to be a recipient of their generosity and know how much it means when your back is against the wall.
Second, they are dedicated to eliminating the insidious disease that claimed the life of my brother-in-law, Jeff, yesterday.
The third reason is that my little brother, Andy, has organized a team at his workplace to participate in this event in support of me and as a tribute to Jeff.
For me, he has taken this on in order to help us in our efforts raise the awareness level about Amyloidosis which is so badly needed.
For more information about his participation and goals in this regard, I invite you to visit his website where you will find an explanation of his intentions and goals.
You can find him by following this link to his site.
These are hard times for everyone, but even now, we cannot forget about these problems, they do not go away until a recovery is made.
In fact they become worse when people are forced to make the choice between shelter for their families and their own health.
In future weeks, I will start to highlight other organizations that help to fight the good fight as they all need your support in order to carry the torch for the orphan diseases in the world.
In advance, I thank you for your support of people who have drawn a losing lotto ticket in the big game.

September 1, 2009 - Day 134

2009-09-01T20:27:00.008-04:00

Today at about 12:20 PM, Jo Ann's brother Jeff took his off ramp on the trip we were sharing and passed away quietly.
A loving husband, father, son, brother and friend has left us, the victim of something that none of us quite understand.
Needless to say, it has been a difficult day around our house.
Even though we all knew that this was inevitable, it still hit swift and hard when we received word from Jeff's son.
Jo Ann and her mom are holding up as well as can be expected and I am trying to do whatever I can to be a caregiver of anything I can.
The memorial services will be in Orlando on Thursday and Friday with the family gathering together from all points on the map.
I don't think that I can make the trip and this makes me hate AMY even more (but I won't start that rant again).
My little brother is going to be in town, so that will help ease Jo's concern for leaving me alone.
This is a short post with a favor to be asked.
When you offer up your prayers tonight or do whatever your nightly shut down routine is, direct a little of that energy to Jo Ann and her family, they desperately need and deserve it right now.
Thanks,
Doug

August 31, 2009 - Day 133 - Edit

2009-08-31T12:37:00.012-04:00

I am sitting here in a state of anger and rage and hatred.
Jeff is going to die at any moment, we just received word that Jo Ann's father has now entered a stage of kidney failure and I feel about as low as I ever thought possible.
I want to strike out at something and bash it to a pulp, but I don't know what it is.
I am angry because so much has been left on this family's doorstep at one time.
I am in rage because all I see around me are exceptional people in this family who have always gone above and beyond to do the right thing for other people and this is the reward that they get.
I hate AMY because of what she has done to me, in many ways robbing me of the ability to help Jo and her family as I should, could and would.
I am angry because Jo Ann has to carry all this weight on her shoulders as the rest of us depend on her so much.
It crushes my heart and soul to see the pain that Jo Ann and her mom are experiencing right now, knowing that I am helpless to provide a panacea to make it go away.
Is this the grand plan laid out for us by our Maker?
If so, please explain to me what the motivation behind it is.
Do we need to prove ourselves to guarantee a peaceful existence in the afterlife?
Boy, it better be good because it is going to take alot to make up for these disappointments and tribulations.
It is really a state of mass confusion around here right now as we all grapple with the unexpected twists and turns in the road as we race down it, heading who knows where?
They say life is not fair, they were damn right (That ubiquitous they).
No amount of platitudes or words of encouragement will ever change that fact.
Hold your head up, stay strong, you'll get over this.
Hey, FUCK YOU !!! That's what I say.
Hey You, the one with the smart ass remarks, try what we are going through on for size and then let me know how it's working out for you.
(I apologize if you are offended by my choice of words here, but those are my words of anger. I don't know of any pretty and noncontroversial verbiage to express it).
Smack me around with reality, it will only anger me more, motivate me more, make me more determined to fight this battle. I can take it (I may need some Ativan to help, but what the heck).
Don't be afraid to do it. I know that you may be just as scared and confused as I am, but go for it anyway.
If we don't face the reality, how can we ever reach a level of acceptance that will result in a peace and calm that should be felt in case I don't beat the odds?
Look, I'm not asking for pity here, everyone goes through something and this is what we are in the midst of right now.
We will deal with it the best we can, we'll make up the rules for it as we go along and we will will eventually come out the other side.
There will be blood and wounds and scars, but they will heal and life will go on, not like nothing ever happened, but with a different perspective, a more wary one.

August 30, 2009 - Day 132

2009-08-30T12:24:00.035-04:00

Tomorrow, I have an appointment to meet with Dr. Shapiro who will be installing the port that I need when the Velcade/Dex regimen starts on September 9.
A port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
A port is installed when your treatment is long term, in order to prevent the problems that arise when trying to stick your veins too many times.
Collapsed veins, rolling veins, and not enough veins are the problems associated with long term and frequent insertion of IV needles.
A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently .
The septum is made of a special self-sealing silicone rubber; it can be punctured hundreds of times before it weakens significantly.
To administer treatment or to withdraw blood, a health professional will first locate the port and disinfect the area. Then he or she will access the port by puncturing the overlying skin with a 90° Huber point needle although a Butterfly needle may also be used. (Due to its design, there is a very low infection risk, as the breach of skin integrity is never larger than the caliber of the needle.
When the port needs to be accessed for the IV or to remove samples, the needle is inserted into the port as seen in this video.
Negative pressure is created to withdraw blood into the vacuumized needle, to check for blood return and see if the port is functioning normally. Next, the port will be flushed with a saline solution. Then, treatment will begin.
After each use, a heparin lock is made by injecting a small amount of heparinized saline (an anticoagulant) into the device. This prevents development of clots within the port or catheter. In some catheter designs where there is a self-sealing valve at the far end, the system is locked with just saline.
The port can be left accessed for as long as required. The port is covered in a dressing to protect the site from infection and to secure the needle in position.
The surgery itself is considered minor, and is typically performed under both local anaesthesia and conscious sedation. Patients sometimes have a little discomfort after the procedure, and can be managed with a narcotic, such as demerol for 24–48 hours.
A port is most commonly inserted as a day surgery procedure in a hospital or clinic by a surgeon or an interventional radiologist, under conscious sedation. When no longer needed, the port can be removed in the operating room.
I am hoping that I can get this insatalled before the September 9 blast off, but I can always take a couple of treatments in the arm if necessary which may end up being the case.
I'll just have to take it "The Old Fahioned Way" as they say.

August 29, 2009 - Day 131

2009-08-30T00:01:00.001-04:00

The clan is gathering in Orlando tomorrow, bur unfortunately, it will be more subdued than anticipated.
Jeff, who is now in the hospice house, is on the morphine regimen that is given to cancer patients to keep them comfortable as the disease does its final damage. He is asleep most of the time and when he is awake, is not particularly coherent and cognizant of his surroundings.
I am sorry but I must close right now, it is very late and my own steroid crash is making it impossible to write.
I'll try earlier on Sunday.

August 28, 2009 - Day 130

2009-08-28T21:11:00.002-04:00

The family is gathering this weekend in Orlando pay their respects to a son, a father, a husband, a brother, an uncle and a friend.
It will surely be a weekend of unknown and untapped emotion that no one will quite understand.
It will be a weekend of exploration for every person there, whether they are delving into their own feelings or those of the people that they are surrounded by.
I doubt that they will comprehend each other's thoughts.
It will all be too personal on many levels.
Old wounds may open and new ones may be created as they struggle to come to terms with the inevitability of the situation.
Normal rational thought will be out the window as they face a a situation that until now has never been experienced by this family unit.
The raw unchecked emotion will need to be checked at the door and not allowed to invade the confines of the space.
It will surely be a learning experience, but unfortunately probably not one that will be remembered the next time these same circumstances occur.
How could it be?
The end of a life is so extraordinary that each must be taken independently.
The relationships between the parties will always be different based on their experience with the individual.
I have no idea what to expect from myself.
I am conflicted by my own thoughts of fallibility at this time.
I know that my disease is not one that presents the best odds and that I may very well find myself in the same set of circumstances as Jeff in a short time.
I hope for the miracle that will turn back the clock a couple of years, but logically I know that will not happen.
This weekend, I may be staring my own fate squarely in the face, forced to view the advance trailer, forced to watch the coming attractions.
I hope to learn from it and take from it the ability to be able to provide guidance to those I love about how I want them to act in response if I end up here as well.
This will be a weekend of soul searching for me as I try to grasp what it may be like to be on the other side looking in.
I will provide all the support that I can muster for Jo Ann and her family, but at the same time, I will use this to authenticate my own personal feelings in my quest to understand how to accept the end of my own life if it comes to that.

August 27, 2009 - Day 129

2009-08-27T21:01:00.009-04:00

Ithaka
As you set out for Ithaka
hope the voyage is a long one,
full of adventure, full of discovery.
Laistrygonians and Cyclops,
angry Poseidon-don't be afraid of them:
you'll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.
Laistrygonians and Cyclops,
wild Poseidon-you won't encounter them
unless you bring them along inside your soul,
unless your soul sets them up in front of you.
Hope the voyage is a long one.
May there be many a summer morning when,
with what pleasure, what joy,
you come into harbors seen for the first time;
may you stop at Phoenician trading stations
to buy fine things,
mother of pearl and coral, amber and ebony,
sensual perfume of every kind-
as many sensual perfumes as you can;
and may you visit many Egyptian cities
to gather stores of knowledge from their scholars.
Keep Ithaka always in your mind.
Arriving there is what you are destined for.
But do not hurry the journey at all.
Better if it lasts for years,
so you are old by the time you reach the island,
wealthy with all you have gained on the way,
not expecting Ithaka to make you rich.
Ithaka gave you the marvelous journey.
Without her you would not have set out.
She has nothing left to give you now.
And if you find her poor, Ithaka won't have fooled you.
Wise as you will have become, so full of experience,
you will have understood by then what these Ithakas mean.
C.P. Cavafy 1863-1932 Greek Poet

Powerful words about how we should take the journey through life.
A pall hangs over our house today as each person deals with the impending tragedy that is about to take place.
There are lots of tears, lots of quiet time, and lots of emotions.
Life goes on though, doctor's appointments still need to be made, houses need to be sold and meals still need to be prepared, but these are diversions right now instead of the primary focus.
All plans are tentative right now.
The days have no meaning, they are merely marks in time, ticks on the calendar.
The time will come and after that our lives will continue as we take up our journeys again, our journeys to our own Ithakas.

August 26, 2009 - Day 128

2009-08-26T23:20:00.003-04:00

The trip to Orlando was not the usual go to Seaworld, go to Disney World happy go lucky kind of adventure that many travelers on The Florida Turnpike were taking today.
For Jo Ann, Ann, her mother, and her sister Jill, it was a somber ride, not to a playground but rather to say goodbyes and to cry with a much beloved brother and son.
It was a trip that they could not have imagined they would be taking so close to Jeff's 60th birthday.
It was not the final trip, but it does define the final stretch in Jeff's long haul.
The doctors have given him anywhere from one to two weeks before the road ends.
How do you even begin to process and comprehend this kind of information when it is your life in question?
How do you wrap around it when it is your son?
If your father was snatched from you at such an early age, where do you direct your anger?
How do accept the fact that the man you swore solemn vows to will soon be leaving you?
How do you become a duo when your whole life you were a trio of siblings?
Knowing that you may face the same fate, what do you learn from this?
These are all very private questions that can only have very private answers.
There is no standard response to judge by, you hold the answers to these questions deep in your own heart and there will never be a way to express them to others.
You alone will decide what the correct response is and there is no grade to be given for the content of your essay.
Today was a day of many questions but very few answers, they will come with time.