Day +54, Settled in New York

It's taken a couple of days to settle in here in New York. The move was stressful and kept me very busy. Because I am as weak as a no-name alkaline battery, it took a full day to recover. And of course, now that I'm here, my family members wanted to come and visit me. But I wanted to take a break from my naps and signing autographs to write, lest you might think I have disappeared. :)

Compared to Boston, there really isn't much to do here in Schenectady. But since I can't do anything anyway, it's all good. Actually, I kind of enjoy it here, if only for a change of scenery. The apartment on Commonwealth Avenue was spectacular. However, you can look at the same four walls for only so long. By the end, it was nothing more than a $4000/month prison cell with lovely views to the Boston skyline.

With my energy level slowly picking up and the edema leveling out I find myself in the same condition that I was in prior to the treatment. Now that I getting more energy, I find that I'm now laying down as much. Since sitting compels gravity to hold fluid, I'm discovering that my edema is starting to get worse again. I'm back to the strategies that I used when this first started -- get up from the computer and force myself to lay on my back every so often.

So, the fatigue and edema are now the only major barriers to coming back to Boston and rejoining the real world (some hair would be nice too). When exactly will they subside to manageable level is yet to be seen.

New Amyloidosis Page

Muriel Finkel of the Amyloidosis Support Group directed us to a new page discussing amyloidosis. It can be found here. It is a well-written page discussing the disease, symptoms and treatment options. I have added it to my list of amyloidosis links on the home page.

Day + 52, Off To New York

The last few days have been busy packing and throwing out everything we didn't need for the trip back to New York. We're scheduled to leave here in a couple of hours. Now comes the moment I've been dreading -- time to unhook the computer.

See you on the flip side.

The Move

It's now 3 days from my move to New York. Time for me to get my house in order (no pun intended). I've finally gotten the energy (and courage) to go through all of the stuff in this apartment to determine what must go into my storage, and what will come with me. My expectations are not to stay in New York longer than need be, so I will be packing only the bare essentials for my stay there.

Along with the computers, clothes and sundries I have packed are the tons of papers from the hospital. There's nothing like undergoing a six-figure medical procedure to generate pounds of lab results, treatment guidelines and instructions. My mother bought a fancy file folder which has been useful for sorting all of my documentation. I'd recommend this strategy for other patients -- this way you have all of your papers organized in one place.

The edema has been holding on the new regimen. It has retreated to below my knees, but it is still hard to walk. But hey, things were really bad before. Ever flip a turtle on its back? It's funny and sad to see it lash its legs about to try and get back right-side up. Well, three weeks ago if you put me on my back, I would be just as funny and sad. Previously, the only way I could put on socks was to lay on my back and put my pants on while my legs were in the air. Now, I'm no longer a turtle -- I can dress myself normally now without breaking my neck.

I take the water pills on every third day. By then my weight starts to head north, but then I take the pills and it goes back down again. On Water-Pill Day I take 2.5mg of Zaroxalyn at around 2pm, then 80mg of Lasix about 45 minutes later, followed by hourly trips to the bathroom for the rest of the night and early morning. Ain't that a pisser.

Mayo Article Regarding Renal Recovery

On the mailing list, someone referenced this article by nephrologists at the Mayo clinic, which discusses recovery of renal function in primary amyloidosis patients who underwent the high-dose chemo/SCT procedure (that would be me).

Ever since this began I've dug into many different medical papers and journals, and I can say I've been able to learn some 'medical-speak' along the way. 'Medical-speak' is that special language that doctors use to communicate with each other, along with their clandestine meetings and secret handshakes. Now that I can understand some of these papers, I feel like I've broken into a mystical inner circle of Hippocratic knowledge.

This paper is interesting to me as it discusses a study held which tested the return of kidney function in AL patients who underwent the retreatment. There have been studies on the effect of the treatment on the amyloidosis -- but none which looked at the body's repair of organ damage present before the treatment.

In summary, it states that they found a favorable chance that protein loss would be either greatly reduced or stopped for patients who underwent the treatment. This is merely a data collection without explanation; the doctors still do not know how the kidneys 'repair' itself.

For me, these numbers could mean that I may not be with this edema for the rest of my life, which is exciting. My days as 'the Human Paperweight' may be over.

Day + 45, No Rest For The Wicked

Now that my days are no longer tied down at the clinic, you'd think that be laying around, as a friend put it, "like a puppy in the sun". You'd be wise to think so, but you'd also be wrong. Now that my systems are functional again, I now must start going through all of the paperwork I've neglected to deal with over the last month and a half. Today I started going through my health insurance, determining which medications were covered, which were not. Getting prior authorization from the insurance company for those that didn't make it. It's a pain in the ass.

Most of the drugs they had me on were rather new and did not have generic equivalents. Some, like Kytril, were nearly $30 per pill. I suspect that without insurance my drug bill would have reached a couple thousand dollars. For that about of money you could buy something useful, such as a 54-inch flat-screen TV.

Recovery from a stem-cell transplant is slow, and as such it is difficult to plan ahead. You absolutely have no idea how you will be feeling at any particular time in the near future. I can't just say I'll be "100 percent" by November; it just doesn't work that way. It's like my own personal Big Dig. Reconstruction is slow, the contractors are taking their sweet time, and I'll be stuck with the big bill when it's all over.

Now that my short-time housing is ending this month, this presents a conundrum. I want to move back to my own place next month, however, my doctor emphatically stated that I cannot be by myself for the first three months. Not to mention that there are still a number of things I cannot do by myself.

I will be going home with my mother at the end of the month to Schenectady, New York, where I will stay at my aunt's house until I am well enough to come back home. I want to say for sure that I'll return in October, but like I said, when it comes to predicting the future with this disease, it just doesn't work that way.

Donate to the BUSM Amyloid Research Fund

As I mentioned when I began this journey in June, amyloidosis is a rare, deadly disease, striking approximately eight per million people. Its lethalness is attributed to the nature which the disease attacks the major organs, and (perhaps more importantly) the high rate at which it is falsely diagnosed by doctors who are not aware of the disease. By time a patient is transferred to a skilled specialist who can make an accurate diagnosis, the disease has progressed to a level which is difficult to treat.

The amyloidosis community has struggled to increase public awareness of the disease, however due to its rarity and perceived low impact on society, this has been difficult to accomplish. As a result, funding for research and treatment centers has been difficult to generate. This is tragic, as there is still no cure for this disease.

But there is hope. A number of treatments have been put together to stop the progression of this disease. Most of these treatments have been bourne out of research breakthroughs from sister diseases such as myeloma and leukemia. There are a dozen or so clinical trials underway today which use different methods to eliminate the amyloid, each with different levels of effectiveness.

I am thankful for these researchers and the vast progress they have made in the last few years. It is humbling to know most of the drugs and protocols used on me in my treatment are less than fifteen years old.

If you are interested in helping join the fight against this disease to find a cure, I would encourage you to make a donation to the BUSM Amyloid Research Fund. Print out the donation form, fill out and send to the address listed.

On behalf of all amyloidosis patients I thank you for your support.

Free At Last (No, Really)

Yesterday something amazing happened. My doctors removed the shackles and finally released me from the clinic. I tell you, it's been a long six weeks. My cell counts are normalizing, the shingles rash is going away, and at least the edema is in check for now.

Now begins the hard part of healing. This will actually be more difficult to do now for the following reasons:

• When I was going to the clinic, I was forced to get up and... go. There's no such motivation for me now; I'll have to make my own motivation.
• I'm starting to get spurts of energy, however, they last no more than an hour or so before having to wind down. This is very frustrating. At least when I started treatment I was too tired to complain.

As you can tell by the increasing gaps in my posts, it's been difficult to get motivated to post on a regular basis. I cannot promise but hope that I will become more regular once my motivation becomes a little better.

Finger Sandwiches

I wake up and put an X on the calendar. 41 days down, 324 to go. It's incredibly frustrating to gloat on your progress each morning, then immediately be filled with ennui over the realization that there's much, much more to go. At least during the first month, there was news and progress on a daily basis. Now that I'm stabilizing, the changes are slower, more spaced apart. Of course, the doctors said it would be like this.

My visit to the clinic yesterday wasn't newsworthy either. At this stage, my initerary might be something like this:

10:00 am - Enter clinic, check in.
10:10 am - Have weight and vital signs taken. Get assigned a chair in the treatment room.
10:15 am - Have blood drawn and the lab. Return to aforementioned chair and wait...
12:30 pm - Nurse wakes you up from nap and tells you lab results are in. Wipe drool off the side of your face, look at lab results and try to make sense of it.
1:30 pm - Doctor comes in, comments on the labs and tells you to come back in two days.
1:35 pm - Leave clinic.

As you can see, one needs the patience of a Buddhist zen master to cope through one of these visits. It's 90% waiting, 10% action. Anyone with a desire to make it through a day of treatment at the hospital with some haste is in for a rude awakening. Here's a tip: Bring a book. Or maybe a pillow.

Yesterday's schedule didn't stray too far from that template. The lab results took their sweet time, but when they came they revealed that my blood cell counts were slowly inching towards normal. Could the high white blood cell counts be a result of a shingles infection? Was my allergic reaction going away? Does this mean I can finally get out of here?

Dr. Wright came in on schedule at 1:30pm and conveyed optimism on these new numbers. He also commented on how we may have found a proper regimen for my diuretics. That being said, he wanted me to see a dermatologist to check out the rashes that caused the shingles scare over the weekend.

One thing you need to remember when you are part of a clinical trial is that you are as much of a case study for medical students as you are a patient. No doubt my labs and tests will be the discussion of some late-night elective class where the medical students always saunter in a half-hour late. That means that during the course of your treatment you will often have young cadets trailing the doctors like ducklings as they examine you. When my dermatologist entered the room, she was accompanied with an entourage of no less than four other medical students. I immediately felt guilty for not preparing hors d'oeuvres for my guests.

So as finger sandwiches danced through my mind (I hadn't had any lunch, so the food reference was not a wise one), the doctor looked at me an began to quiz the students on some of the bumps on my body. This was obviously the first time they had seen eczema on the back of an amyloid patient, and they were filled with the glee of a child at the Wonka Chocolate Factory. After much obscure medical speak was passed around, the dermatologist looked at me and spoke her professional opinion: "It looks like acne... I'll prescribe you some cream." That's fine about my head, but what about the rash on my back? "That's a curiosity we'll have to watch," she says. I sigh.

So, I'm home with a day off to relax so I can do it all over again on Friday.

Not Ready Yet

Ahh... another day off at the clinic. Although I was officially dismissed on the 5th, I have been still going into the clinic on a semi-regular basis since. There are three reasons why I haven't hightailed it out of there.

First, they are still trying to determine a proper regimen of water pills to get my edema to a managable level. Perhaps I'll be drafted as a float in Macy's Thanksgiving parade. However, my aspirations of floating across 42nd Street may be premature, as it seems like the edema has not grown in the last week and that this will eventually be taken care of.

Second, there's still the 'curiosity' of my high platlet and white blood cell counts. The platlets are inching back to normal, but my white blood cell counts are still very high (three times greater than average) and are still rising. The doctors suspect that I am suffering a severe allergic reaction to something, however what that something is we don't know. It could be from a complicated reaction to one of my medications, or as simple as the soap I'm using. Right now it's a process of elimination, and we're not going anywhere fast on this one.

Finally, they're still watching the pimples on my body for a shingles infection. It appears that the antiviral is clearing them up, but it's still too soon to tell. This scare is serving as a great wake-up call to exactly how defenseless my immune system is during the recovery period.

All of these things mean that I'll probably be making occasional visits to the clinic for the rest of the month. Although a few weeks ago I felt a little sad for leaving the place, I now feel like my time there is finished, and I'm ready to leave. However, I'm always thankful to have available such great doctors at my disposal while there are still serious issues with my recovery.

Amyloid Mailing List

I've added a link to the Association of Cancer Online Resources (ACOR) Amyloid mailing list. You have to subscribe, but once in you'll find an active forum of amyloid patients, caregivers and doctors answering questions about the disease.

David Lange passes away

I just read that David Lange, a former prime minister of New Zealand, passed away over the weekend. David is one of growing number of high-profile figures who have/had been diagnosed with amyloidosis.

At the Boston Support group meeting on Saturday, one of the patient's wives told the story about how she worked at a newspaper. When her husband was diagnosed with this disease, she tried to persuade the paper to publish a story about this rare disease. The conclusion brought up was that unfortunately such a story would not be presented as news-worthy until a public figure or "somebody famous" was reported to have the disease. Only when these types of events are reported would a story catch the public eye.

As an amyloidosis patient, this can be depressing, as it is important to notify the public about a disease for many reasons. First, publicity educates the public and makes the them aware about amyloid. They may look at their symptoms and ask their doctors, who in turn learn more about the disease. Second, bringing this disease out in a public forum could stimulate conversation between people, and new connections and relationship between patients could be made. Finally, public awareness spurs interest in hosting charity events and finding a cure. For example, there are more resources in this country to curing AIDS or cancer than lymphoma or myeloma.

Rest in peace, David.

Shingles Scare

Due to immune system suppression, it is common to find an outbreak of shingles in stem cell patients. For those who don't know, here's a brief synopsis of this condition which I found in an article off the Internet.

Shingles, also known as herpes zoster, is caused by reactivation of the virus that causes chickenpox. Once chickenpox infection has run its course, the virus is not eliminated; rather, it retreats to clusters of sensory nerve cells usually located near the spinal cord, where the virus persists in a dormant state. As immunity weakens with advancing age, the virus can reactivate, multiply in and damage sensory nerve cells to cause pain. It then migrates to the skin, causing the blistering rash of shingles.

Anyone who has had chickenpox, which includes most adults in the United States, could develop shingles, although not all will. The two major risk factors are increasing age and declining immunity. Half of all people who live to age 85 will get the disease. Experts estimate more than 1 million new cases of shingles occur in the United States each year.

You can understand that if you had chickenpox, and your immune system was suddenly eliminated, this virus would have free rein on your system.

For the past week I've developed some 'pimples' on my back and chest. The one my back recently turned into a blister yesterday. Fearing that I may have contracted shingles, I went to the emergency room yesterday to have it checked out. The doctor there was midly suspicious, but wasn't totally sure. To be safe, I was put on some antiviral drugs, and will have my doctor look at it on Monday.

Week Wrap-up

Today did not provide much more information on my outstanding conditions. The edema has been stopped, for now. I've been given a prescription for a different set of water pills to test a theory -- that I am experiencing a significant allergic reaction to the current set of diuretics that I had been taking. This would explain the strange blood counts that have been occurring with my system. Because of these 'curiosities' I will be going to the clinic again for another week.

Now that I'm on Day + 35, I finding that the recovery portion of the treatment can be as frustrating as the treatment itself.

You see, whenever you get a cold or the nasty flu, you measure your recovery on a day-to-day basis. You feel miserable, but you know that in a few days you'll be well and feeling like your old self.

At this point in the recovery, I am also 'under the weather'. Not deathly ill, but not exactly well either. However, the timeframe for healing is much longer -- several months. You do not feel better on a day-to-day basis, so it is very important to keep your head up and keep telling yourself that you will become better and come out of this stronger than when you came in. I feel so close to being able to join the real world again, yet I am physically, physiologically and mentally so far away to be able to do so. It's difficult to return to your daily life when you are starting again at ground-zero on so many levels.

Fresh Breath Tip

Here's a neat health tip I learned as a result of my treatment. Don't say I never gave anything to ya. It's an "oldie but goodie", but if you've never heard it before, then I guess it's new to you.

Instead of rinsing your mouth with expensive alcohol-based mouthwash every night, try putting a teaspoon of baking soda in a glass of water and rinse with that. Your mouth will be much fresher when you wake up in the morning (no "morning mouth") and is much more effective at destroying bacteria. Not to mention all that cash you'll be saving at the grocery store.

Because the chemotherapy destroyed the bacteria in my mouth, I've been required to do this in the morning when I wake up, at night before I go to sleep, and after every meal. It's a practice that I will definitely continue after treatment.

Plan B

With my weight surging nearly ten pounds in the last three days, there was no doubt in my mind that the doctors would do something. It's true that I've been eating about six meals a day... but I swear a good portion of this new weight is fluid. It has started to fill up in my upper legs again. This puts pressure on my knees when I walk, causing me to walk in an discombobulated stagger.

So I got a dose of the good meds -- the Zaroxalyn / Lasix diuretic combo. This stuff would pull water out of a dry sponge. It's been five hours and it's already pulled a liter out of me. The ballooning of my weight has come to a screaching halt.

My platlet count has started to come back down, which is reassuring. However, my white blood cell count is now very high. High white blood count + high platlet count usually means some sort of infection. But as I said, since there are no overt symptoms there's nothing that they can do about it. The fellow who examined me today called it a "curiosity", which I've learned in the medical profession is an euphemism for "we have no friggin' idea why this is happening". Now that's a useful term. Perhaps I can use it somehow when I go back to work:

Attorney: Thanks for getting that software set up for me. By the way, do you know why my computer crashes in Word randomly and I lose several billible hours a day?
Me: Hmmm, well, that's a curiosity that we will need to continue to monitor.

You learn something new each day. Anyway, between my bloating and and my "curiosity" I'm scheduled to come into the clinic tomorrow morning for a follow-up. So, I'm not out of treatment... yet.

Mental Note: Avoid The Fried Rice

It's a testament to the popularity of your blog when you receive e-mails wondering when you're going to post again. It's been difficult scheduling updates between writing to my friends and other patients online and taking long, luxurious naps.

It's also been a challenge dealing with my body as it heals. I've been getting sick in the morning, especially if I eat breakfast too early. I've been moody and irritable for some reason. And those food cravings! I don't think that waking up at 2 am because you have to have a dill pickle is normal. My mother thinks I may be pregnant.

I was given yesterday and today off to see whether my body would be able to handle the fluid levels in my legs without any medications. Between my enormous appetite and time on my feet, I'm afraid that I haven't got this under control. I estimate that between Monday and today I've gained 9 pounds. The edema is moving back into my upper legs for another attack.

Another first today: eating at a mall food court. While walking in Square One Mall this afternoon for my daily walk, we passed the food court upstairs. All of a sudden, I had a hankering for Chinese food. Now, I'm aware that food sold at these places might not be the most well-prepared and gentle to the stomach. However, I had a craving and wanted to take care of it NOW, special diet be damned.

Everything seemed to be fine. In fact, if it wasn't for the severe stomach ache two hours later, I wouldn't have suspected a thing. At 2:30pm, I was here at the computer, writing e-mails. By 2:35 I was in my favorite room purging my lunch , umm, in every possible way. I had to take an Ativan and sleep it off. My stomach is still upside down as I write this.

So, mental note: next time you go to a mall food count, avoid the fried rice. Or better yet, avoid the food courts... at least for a little while.

Amyloidosis Support Group Meeting

The New England Amyloidosis Support Network is holding a support group meeting this Saturday at the Boston Medical Center. If you are in the area and a patient (or merely interested), we'd love to see you. You can learn more details on the Amyloidosis Support Network website.

Day + 31 came and went without too much excitement. I haven't taken any diuretics for three days, yet my weight is holding steady. However, everything isn't so rosy and cheery, as I learned. Here's was my conversation with my doctor today:

Doctor: How did your weight hold up over the weekend?
Me: Glad you asked, Doc. I haven't taken any diuretics for three days, yet my weight is no longer going up!
Doctor: Great! I guess we'll cut you off the good diuretics every day and let you lose the last 7 pounds naturally over the course of several months.
Me (angry): Me... need WATER PILLS!!! (grabs needle and attempts to stab doctor)

OK... so I dramatized it a bit, but that's how I felt it went. Since they drained most of the fluid off of me to allow my body to stabilize, the doctor feels that proper course of action is to allow my body to remove the remainder naturally. It sounds reasonable, but I was really hoping to get back to baseline and remove the duck feet very soon. Now as a result of my exuberance, I'll be hobbling around like a stunt extra from Dawn of the Dead for the rest of the summer.

I'm happy to report another "first" today: my first day after treatment without taking a single nap. This is very big, considering I average about three of them a day. I'm a little tired tonight, but it is tired in a good way. An increasing energy level is a good next step.

Potential "last" visit to doctor on Thursday to see how I'm doing before they let me go. There's a couple issues they still want to watch. My platelet counts recovered from the treatment, but has continued to grow and multiply to extremely high levels. This could mean a number of things, such as infection, internal swelling or other nasty things. But since I look good and haven't keeled over yet, all they can do is wait and see.

A Picture Share!

Day + 30, State Of The Recovery

A small milestone, but one nonetheless -- we've hit the one month mark. I thought that I'd write an overview about the first 30 days, and give a synopsis on how I'm progressing thus far.

When I started this blog, I referred to my melphalan / stem cell transplant treatment as the "nuclear option". I could never have imagined how accurate this description was. When a nuclear bomb explodes, it is silent for a split second. Then, it explodes with amazing force that devastates everything instantly. It produces a mushroom cloud which lifts radioactive material into the air. This material falls back to the ground, which causes additional destruction long after the bomb has exploded.

The high-dose chemotherapy works the same way on your body. When you get the chemo, you feel nothing for a few days. Then all of a sudden, it goes to work killing all of your bone marrow. On Day + 4, the chemo makes it to the bone marrow. By Day + 6, all of your white blood cells are gone.

The chemo is flushed out of your body in a few days, but its effects go beyond destroying the bone marrow. It also disrupts the production of all fast-growing cells in the body such as taste buds, hair on your head and intestinal mucous membranes. This happens at a slower rate, and you do not see or feel this damage until weeks after the chemo has passed through your body. My hair did not start falling out until Day + 10, and even to this day I am still shedding like a Siamese cat.

While I am starting to feel more like myself, at Day + 30, I am still under a lot of fatigue. It forces me to take many naps during the day, and often times I do not feel like doing things I want to do (or have to do). I recognize that it will take several more weeks before I see some improvement in this area, but it is frustrating waking up and feeling no better than the day before.

But there are already some signs that I am healing. For starters, all of my taste buds have nearly returned. There are only a few things remaining which taste like paint thinner. The shedding of my head is slowing down. Facial hair looks like it may start growing again in a few weeks. And of course, I have my sense of humor back :)

The edema has been reduced to the level it was prior to my treatment: uncomfortable, but manageable. We'll get the rest off, eventually. I'm just thankful I'm no longer carrying 30 pounds of the stuff.

They say the next 30 days will follow the same theme as the first: steady but very slow progress. It's a frustrating wait, but I'll know I'll get there.

Day + 28, Discharge

My apologies for not doing a "Day + 27" post yesterday, but it probably was for the better. My mother had made me hash browns for breakfast yesterday, and I made the mistake of eating about a pound of it early in the morning. I must have violated some unwritten law decreed by my stomach on morning food consumption, because that didn't last long. I was sick most of the day and pretty much slept it off. So there's your Day + 27.

Day + 28 has been much better, thank you very much. I was officially discharged from the hospital today, with a follow up visit on Monday. Many staff members are going on vacation starting next week, so it was better to get the paperwork taken care of today. I feel both excited and anxious about not having to go to the clinic anymore. On one hand, it's great that I will have time to sleep in, rest and relax during the day. On the other hand, I met a lot of great people at the clinic and will miss seeing them and socializing.

We sat down with Kate Fisher, one of my doctors at the clinic, for a final consult. Basically she discussed the things I can and can't do.

• Diet: A little more relaxed. Things still have to be really cooked, but I can now eat peeled fruits. I can now go to restaurants, as long as it is off-hours (avoid people) and I check to make sure everything is well done.
• Sports: Need to slowly increase my strength by walking a couple times a day. Basically, don't sit home all day watching re-runs of CSI.
• Alcohol: I can drink again! However, considering I can't hold down my mother's beloved hash browns, I can't see myself downing a couple gin and tonics. I think I'll remain dry for the near future.
• Immunizations: All of my immunizations have been wiped out. One year from now, I'll have to go to the doctor and get them all over again... yes, even the baby shots. This also means that I am vulnerable to a number of diseases that would be uncommon for someone my age to get, like polio or shingles. My resistance is similar to an AIDS patient at this stage.

Fatigue

My weight continues to plummet like a dot-com stock. The good news: as a result of yesterday's diuretic extravaganza I lost another 2 pounds. The bad news: I still feel like I'm retaining a lot of fluid in my body. Makes me wonder how much I really weigh. It's going to take a lot of Ben and Jerry's ice cream to get it back up.

That's not to say I don't feel any changes. It has almost totally drained my groin and upper legs; it is now evening out my waist and arms. I was able to sleep on my side last night without losing circulation, so there's that.

Oh yeah, the fatigue

Now that the edema is being taken care of, fatigue is now my biggest barrier to full recovery. This is a normal complaint for amyloidosis patients (and stem cell recovery patients in general). Your body remains in serious trauma due to the immune system destruction and reengraftment; such a event takes a lot of time for you to recover from.

Note that I am using the word 'fatigue' and not 'tiredness' -- the two are completely different.

• Tiredness: Your body says, "hey bud, you're running out of energy. I suggest that you get some rest, you know, when it's convenient for you."
• Fatigue: Your body says, "the system will be shutdown in 5 minutes for emergency maintenance. Please log off now!"

So when you get fatigued, there's a nap planned for you in the immediate future. Between my hectic nights and unscheduled naps, I sleep on average about 11-12 hours a day. When I am awake I still cannot push myself. Most of the time I am on the couch or doing something sitting down, as I simply just don't feel like doing anything -- even the things that I enjoy.

Patients I've spoke to say that they still experience fatigue six months after the procedure, but that most of it subsides after three months or so. It's very frustrating when your mind wants to get back to normal life, but your body simply won't allow it.

Day + 26, The End Is Near (Or Is It?)

It's kind of amusing... between my lack of fat, low red blood cells and my low-blood pressure medication -- I've been chilled to the bone. It's been very hot here, and I actually feel cold. It was over 80 degrees today, and my mother and Janice are sweating to death in the hot treatment room. I'm wrapped in a blanket. Hehe.

Saw the nephrologist today, which was an uneventful visit. When things are going good, there's nothing really to talk about. Although it's way too early to draw conclusions, my kidneys seem to be stabilizing. Enough fluid has been removed from my body so that it is starting to lose weight by itself. However, I still have a lot of fluid. My nephrologist believes that I lost around 5 pounds during treatment, meaning I'm still carrying 10 pounds of fluid. This means that at its peak I had 25 pounds of fluid in my body. So glad they intervened, as I would dread living the rest of my life as a human paperweight.

So, they've worked out a regimen for me, and see how I do by Friday. If things look good, they will officially discharge me from the clinic. However, I will need to come in for a quick visit on Monday and go from there.

Hurray! I guess.

Drug Rotation

It's important to note that during my treatment -- from the chemotherapy to the stem cell engraftment -- you are put on a lot of drugs. These pharmaceutical delights keep your system in check while your immune system rebuilds. They also mess with your mind, causing sleeplessness, some anxiety, and a general 'numbness' which makes you feel like hell. But hey, nothing's perfect.

Upon engraftment, most of these drugs are stopped, which makes you feel like yourself again. But be sure that you'll still be on some regimen of drugs depending on the condition of your body as it tries to heal.

Now that I've set this up (without my first coffee of the morning, mind you), I can give an update that I forgot to bring up yesterday about my drug habit regimens. Spoke with the good Dr. Wright, who along with Dr. Fisher made some changes in the lineup.

• First, my abuse of Ativan as a sleep aid is over. They've told me to stop this precious drug, supposedly because it is addictive. I told them I can stop taking it anytime I want to. Yes, my precious Ativan, so sweet... Oh, sorry, got carried away. Anyway, they substituted in Ambien which is more suited for my usage.
• I protested about taking Lexapro, as I do not want part of the growing masses hooked on anitdepressants. I was only taking 10mg, so I questioned its usefulness. He took me off of it.
• If you recall, the nephrotic syndrome was causing my body to bring my lipid and trigylceride counts through the roof. The clinic performed a lipid extraction prior to the treatment to get them down to manageable levels. Well, they are back up again. To combat this, I am back on the Vytorin.
• My blood pressure has been closer to normal (for me), and as such my midodrine dosage has been reduced from 15mg to 10mg.

Add on the diuretic cocktail I've probably be prescribed today and you'll see that I'm still making frequent visits to the local CVS. I'm starting to get really good at opening up the caps on those things.

Day + 25, Goodbye, Mr. Hickman

What a rough day. For the past month or so, I've been taking Ativan to put me to sleep at night, as I've been needing it. On average, I get up at least 3 times a night to go to the bathroom (a result of all of the diaretics I've been taking), and it's problematic to go back to sleep.

Last night, I decided to break free from the chains of my beloved Ativan and chose to go to the sleep au natural. Big mistake. We had really serious thunderstorms over Boston during the night, and between my restroom expeditions and viewing the lightshow outside, I didn't get any sleep. Needless to say, I've been very grumpy all day. When I say grumpy, I mean dry heaves and upset stomach. Blah.

But I do have some significant news -- my catheter was removed this afternoon. You know how they remove it? They just rip it out, like pulling for a turnip. I expect to be sore tonight.

So, I'm now very close to being released from the facility... it could be in a matter of days.

Day + 24, Rotation

At the start of each month, there is a doctor / fellow rotation for the amyloid clinic of the Boston Medical Center. While all of the doctors work together and become familar with all of the amyloid patients, you get a 'main' doctor who makes the diagnoses and decisions about your treatment. In addition, there are specialists on the team who are consulted when needed. For example, I do not have significant cardiac involvement, so I do not see Dr. Falk, the cardiologist. But I will be consulting with Dr. Dember, the nephrologist, who will give me a status report on my progress tomorrow.

When I entered the clinic in June I was given Dr. Sanchorawala as my primary doctor. For the month of July this switched t0 Dr. Seldin. As of today, I was given Dr. Wright to cleanup and send me home.

All these doctor's names are making me dizzy. Give me a second to straighten out. Whew.

OK, so as I was saying -- each of my doctors are all-stars in their field and very capable and personable. But when you get a rotation, you are still new to the doctor since they have not seen you before. So, today I was given a test on a new combination of diaretics in preparation for my departure from the clinic.

Oh, there's a chance that they may take out the catheter as early as tomorrow. This gives me mixed feelings. Sure, I'll no longer have plastic tubes embedded into my skin and stuck into my chest, but I've had it so long it feels like a part of me. And it's so neat to show off.