Day + 6: Valley of the Dead

After a number of false starts throughout the night, I finally woke up this morning at 5:30am with a knawing pit in my stomach. It wasn't too disabilitating, but it was enough to prevent me to go back to sleep. Once I sat in from of my computer and had some oatmeal, things started to settle down a bit for me.

Today was Day +6, the day typically associated with the nadir, or low point of your immune system before it reboots. Last year during my first treatment, I was so inundated with fatigue, nausea and drugginess on this day, that I literally thought I was in the Valley of the Dead, or perhaps in some limbo land between consciousness and death. It was definitively the worst I had ever felt since being diagnosed with the disease 15 months ago.

Of course, they say that 'hindsight is 20/20' and we can look back and constructively analyze even our most troubling moments once some time has passed, and some reflection is applied. And now I know that a lot of my suffering was related to the high number (and high dosages) of the drugs that the doctors had me on to provide me protection during this vulnerable period.

Now, we're on the second time around. The astute decision to reduce the dosage of some of those drugs has made a remarkable difference on how I've been able to cope with my the low days of my treatment. I am awake and aware of my surroundings, with nearly no nausea or major side effects. There is a persistent fatigue that has been plaguing my over the last few days, but as you can see by my post, this has not been a hindrance. (Of course, I've enlisted some caffeine to help in the cause!)

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The stay here at the Comfort Inn in South Boston has been comfortable, but tragically uneventful. Tonight will be night number five. Solitary confinement will break down even the most hardened of character, and so you do welcome the daily trips to the hospital, if only for a change in pace.

Every morning at 8 a.m. my mother and I take a courtesy shuttle to the Preston Building at Boston Medical Center. Less than a half-hour later we arrive and are checked in. I am quickly waited on (and weighted in... Need to keep an eye on my edema!), and shortly after I am given one of the two semi-private treatment rooms for amyloid patients. My blood pressure and some other vitals are checked, and then I am left alone for a bit. Around 9:30am, another nurse comes around to draw blood samples through my catheter, and then the catheter is "flushed" with a saline solution to discourage clotting.

There is some more waiting, for about 60-90 minutes while the blood is checked at the lab. Typically this is a good time for a catnap. Around 11 a.m. or so, the head nurse arrives to discuss how I've been feeling, if I had any problems the previous night, and to briefly go over the lab results. Today my white blood count was 0.3 (normal is approximently 4-8). I was officially in nadir for the second day in a row. My other labs are a little wacky, but nothing uncommon for this phase in treatment. My platlets are getting low, but I am still safe from needing a blood transfusion at this point.

There is some more waiting, and then finally the 'doctor on patrol' comes in and interviews you in the same manner as the head nurse: how have the last 24 hours been for you? Any complaints or concerns? The lab results are discussed again, and if there are problems, they are addressed. Otherwise, you are checked out and free to go. We decided to stay so I could grab the free lunch.

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Now, it's been a breeze this week, and we've been enjoying only half-days at the clinic, but last year was a total mess, and it was not uncommon to spend the entire day there. Each patient has a different experience.

My mother and I have had the honor of meeting another couple who are coming from the hotel to the hospital on a daily basis. (The patient is a 72-year old man with light-chain deposition disease, which is a cousin to amyloidosis). Today was Day +7 for him, and the drugs and fatigue have been hitting him hard. He was admitted as an inpatient for the second time in a week because he was so ill. As I've stated, each patient takes a different journey through their treatment.

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I was able to talk to Philip at length today, and we spoke about some tips for making his treatment as comfortable and stress free as possible. He has a strong will, and I am sure that he will overcome some of the issues that he is having with setting up care, and that he will get through the treatment with flying colors.

Well, I hope that this entry has been helpful to others as it has to me. Please do not hestitate to contact me if you have any specific questions about anything. Have a good one.

Day +5: Yadda Yadda Yadda

I'm so happy. But not because that I've been feeling any better. (As a matter of fact, my white-cell count nearly bottomed out this morning). And it can't be that I have my taste buds back. (That won't happen for a while).

I'm pleased as punch as my mother and I were able to take yet another early day to stop back at the apartment to pick up some things, and to get away from that god-awful boring hotel. Not that it's a bad place, but you can only live in two rooms for soooo long. If I played another game of Solitare on that king-size bed, I could scream.

Smiles all around for this guy.

But in all seriousness, I really can't complain. Although my energy level is pathetically low, at least the recduction in my drug prescriptions have allowed my to retain my lucidity and general good humor. Those who followed me at this time last year know that it was a completely different situation. As long as I can stay off the major drugs, it should be smooth sailing.



All that's required is to lay low for the next few days, and wait for the counts to come back up. If I hold up for another 5 days or so, I may be able to return to my apartment early next week.

---

But while I have the computer again, I'd like to make a few public announcements.

• Philip Zimmerman is one month away from his first stem cell transplant. Unfortunately, he doesn't not have any close family or a dedicated caregiver for his treatment. Did I mention he has a mortgage to keep up?
  
  Please contact him at his website if there is anything you can do to help Philip out --- if only just for sending him a message wishing him the best during his upcoming treatment.
  
  
• My good friend Jason Verbovsky from Toronto is running a half-marathon on behalf of The Lymphoma and Leukemia Society.
  Jason has notified me that he will be running the marathon on my behalf, and for that, I am very thankful (I am tearing up as I write this). The Lymphoma and Leukemia Society helped me last year by paying for a portion of my chemotherapy medications. Please support Jason in this endeavor.

Well, my brain is about to shut down. I'll be in touch.

Day + 4: Dropping

It hit me late this morning with a wave of extreme fatigue. I still have my wits and normal lucid personality, but all of a sudden I'm not in the mood for any unnecessary excursions today!

My lab results confirm my feelings - my white blood cell count is down to 1.6, and I'm expected to lose it all by Thursday or Friday. Until then I need to lay low.

My doctor is coming in. More news later.

Day + 3: No News Is Good News

Our first day at the Comfort Inn has been pleasant so far. I am still doing well with the reduced doses of compazine and decadron, which has allowed me to be much more lucid and independant than I had been at this time last treatment.

We essentially had only a half day over at the clinic this morning - just some standard blood tests, flushing of the cathether, and waiting for the go aheads from the doctors to let me go. We were back walking around the hotel before lunchtime.

I still feel that staying here in a hotel suite, 15 minutes south of the hospital, is still a waste. Especially when you consider I have a nice apartment not that much farther away. But, as the doctor's have warned me, my blood counts have not dropped yet, and come Wednesday or Friday I will hit a low point and not feel so great. So being close may pay off during a bad night.

But for now, I'm just waiting for the "shoe to fall off the other foot." I feel stable, and other than a slight loss of taste, I haven't felt any changes yet.
<end>

Day + 2: Holding Steady

I was pleased when I woke up this morning, having not needed to take the Ativan that I regularly need to sleep through the night. It's true - I did wake up at 4am, but it was due more to my mother's snoring than an upset stomach.

So far, my strategy for taking only the bare minimum of drugs to get by is working. I still believe that a lot of the 'inner hell' that I had lived through during my last treatment was caused by over mediciation. My unpleasant evening on Thursday confirmed these suspcisions. As a result, I will try to cut down on dosages whereever my doctors allow me to.

This morning is unlike any typical, lazy Sunday morning, although I must admit I have had better days! Still, my major complaints are not pain or nausea at this point -- just boredom. This is absolutely fine with me. I am still a little foggy in the head, but it's not too bad.

My mother and I leave for the hospital for some more aranesp shots in a few minutes -- then we will come back to the apartment for some final packing and, then, admission into the hotel, which will be my home for the next 7-10 days.

Day + 1: Breather for the Weekend

Traditionally, things get a little easier on the weekend, after your stem-cells have been reinjected into your body. I can't say that I am ready to run a marathon, but I have been quite lucid so far today.

Today was a quick expedition into Boston Medical for ararensp shots to stimulate the stem cells I received just the other day.

My mother and I made it home before noon, however, there is a lot of planning to perform. Last week, the doctor's were a little worried that my apartment would be too far away from the hospital in case I needed to arrive in an emergency. As a result, it was suggested that we get a hotel closer to hospital for the next 10-14 days, as I navigate through the low point of my treatment. So, starting tomorrow night, we will be staying at hotel until further notice. I am unhappy because of this move, but if my health starts to drop similarily to how I did last year, then perhaps this will be a good idea.

I won't have the computer available, so I will try to provide updates via my mobile phone.

Day + 0: The Stem Cell Infusion

Forgive me if I can't add much to the events of today; I was drugged up for the majority of it. Essentially I had the remaining 9 million stem cells injected back into me, so that they will engraft in my system, replacing the cells that are being killed off by the chemotherapy.

I am still a little drugged from all of the medicine that they have me on, although they are allowing me to cut down on the some of the drugs that were causing me problems last night. We shall see if this will be effective.

Like the last transplant, I am slowly losing my ability to think straight and write coherent posts. I will endeavor to provide updates when I can!

A Hard Day's Night

Last night was the beginning of one of the 'torture nights' -- unable to concentrate, but also unable to sleep, I spent the evening pacing the apartment. I also had a severe case of the shakes, for some unknown reason.

Fortunately, the Ativan kicked in around 10:30, and I was able to get a few hours of sleep. At 1:30 am, the medicine wore off again, and I had to take another Ativan to get me to now (5:10am).

Needless to say, the evening was not pleasant, and I do not look forward to dealing with these feelings on a nightly basis again (as I had to do last year).

Day -1: Short Day At the Clinic

Today was a quick day at the hospital - relatively speaking. You get a day off between your second day or chemo and your stem cell transplant.

The drugs are starting to put a real number on me, as they are caused me to be very drowsy throughout the entire day. It is not even 4pm yet, and I have already taken 3 naps. I am a little dazed and confused, so it's quite likely that I'll be going for my fourth soon!

Day -2: Chemo Day II

Today was a repeat of all of the events that occurred yesterday. More drugs, more ice and more chemo. The day was a little rockier due the drugs I was taking last night, which totally threw off my sleep schedule. As a result, I got only a few hours of sleep, and I was essentially a zombie the entire day.

My stomach was off for most of the afternoon, but after eating some delicious food for dinner (thanks, Lala!) I seem to have stabilized a bit.

I seem to still have my senses at this stage, but I am not expected to really decline until the end of the weekend. I'm not looking forward to being spaced out for an entire week or so, but I am eager to jump in and get it all over with.

Thanks to everyone who have sent me e-mails and comments, and to those who have called me saying that I am in their prayers. Your strength means so much to me during this period, especially and I head "into the storm". Again, thank you.

Day -3: Chemo Day I

This morning I took my last free breath in the cool outside air, and walked into the Preston building at around 8 am for first day of chemotherapy. I was quickly given a bed in one of the amyloid treatment rooms. As soon as I sat down in the bed, I knew that nothing has changed since I my first transplant 13 months ago.

The routine was similar what I did last year - first, they hydrated me for two hours. Next, they gave me Kytril for anti-nausea and Ativan for anti-anxiety. Then 15 minutes prior to getting the chemo, you chomp down on the ice.

This is the melphalan -- the stuff that could save my life by destroying it

The ice, as astute readers may know, is given to the patient in preparation to the chemo. It's role is to protect the mouth and toungue from sores that the chemo could cause. For 45 minutes, you hold as much ice in your mouth as possible, if hopes that is would dissuade the chemo from attacking there. This is a not a pleasant experience, as you must continually shove ice in the mouth, and you cannot stop.

hhmmmmmppph!

I mentioned that the chemo days are anticlimatic, as you don't really feel any side effects to the chemo immediately. Once I was finished, I did take a nap from all of the drugs I was fed.

Uhm, DON'T ask.

We arrived home at a little after 3p.m. I am resting comfortably, although I feel slightly spaced out from the drugs. I just took 1mg of Ativan a bit ago, so I'm getting sleepy. It would best to end this short before I fall sleep at the keybooooard. Yawn....

Tomorrow will be a repeat of before, and I'll have more pictures then!

Day -4: Reflection

I tried to make the best of my last weekend of freedom, but it ended up being anticlimatic. About the wildest thing I did was have a fragrant disregard for my restricted diet. Sushi, tacos, chinese food -- if it had salt, I probably was packing it down. I also loaded up on fresh fruits and vegetables, as I won't be able to have them for quite a while. Despite the food orgy, I held up pretty well.

Oh yeah -- on Saturday I shaved my head. Waking up with clumps of hair on your pillow isn't very encouraging.

One thing I also did was to get on the computer and read my blog entries from last year. I wanted to refresh my memory on how my treatment progressed the first time around, as a lot of it was kind of hazy. I totally forgot how I started to drop as soon as I started my chemo. And considering that I get my first dose tomorrow, I'm starting to get a little nervous!

Talking about tomorrow, a lot of things will change. First, I'll have to start wearing the #@?! mask again in public. I also start my medication.

Today we went into the hospital to get my catheter flushed. Fortunately, we were able to find a nurse and get it done rather quickly, and now we get one last day of relaxation before it begins all over again.

Day -8: Catheter Insertion

It's been a long day. We made it to the hospital at 7 o'clock this morning, just in time for our appointment. It was one of the usual, "hurry up and wait" days that you experience during your stay here. Even something as simple as getting a catheter installed takes a couple of hours, since you move from department to department. Now is the time to start investing in a couple of good books.

The routine was the same as last year, although this time around I was given a slightly smaller catheter due to the fact that I was not donating stem cells. You are given some drugs intravenously to relax you, then they cut you up and slip in the catheter. The process was not too painful since you are quite numbed up. When they are finished with you, you are sent back to the recovery room for a couple of hours to make sure everything is okay. You are doped up anyway, so you are in no mood to complain.

Just out of the operating room. I don't remember my mother taking this picture.

I was quite tired for the remainder of the afternoon. It's been only an hour or so since I started to feel like myself again. For tonight, it's a night of rest and relaxation (and probably some Tylenol as well).

A decision has been made on my chemo dosage. It was rather anticlimatic, as the doctors have made the decision for me. At the meeting yesterday afternoon, they decided to keep me on the protocol and give me 140 this time around. They couldn't justify making an exception for me, even if I am a charmer.

The chemo schedule has been pushed ahead one day, to next Tuesday and Wednesday, with my stem cells to be given back to me on Friday. I have been given tomorrow off to enjoy my final weekend of freedom. At least for a while.

Admission Day

(from the movie "Airplane!")

Old Lady: Nervous?
Ted Striker: Yes.
Old Lady: First time?
Ted Striker: No, I've been nervous lots of times.

For some reason, that movie quote came into my head as I admitted myself into Boston Medical this morning, for what would be the first of many visits. This is typically the easy part, as you are not drugged up at this point (and still have all your hair and dignity).

We left early to deal with a much more stressful issue -- getting my mother adjusted to Boston traffic. She is from a place with people use their directionals, and get into the proper lanes to turn, so driving here has been quite a reckless experience for her. I've been letting her take the wheel since she arrived yesterday, so that can feel comfortable changing lanes at will and cutting off people without any remorse like the rest of us. So far, we're not there yet, as she still has difficulty with her defensive driving. This is making me very nervous. Well, at least I can cut down on the low-blood pressure medicine for a while.

At the hospital, I met with two of the doctors that will be managing my treatment. Although I've had some quality-of-life issues with the kidney damage, they say I am holding up extremely well. They are still impressed that I was able to get through the first transplant without needing to stay in the hospital, or even requiring a blood transfusion. (Almost everyone doing through a transplant does both at least once).

Eating the hospital cafeteria food leaves me dazed and confused.

So, this goes back to the $64,000 dollar question: what will be my dosage for the second transplant? I received the full dose first time around, and my protocol calls for a medium dose on the second transplant. However, due to my age and my (relatively) excellent health, they are willing to entertain giving me the higher dose. But the decision is a complicated one. A higher dose carries a longer recovery period, more suffering on my end, and a bit more risk (I could die from the treatment), but may provide a slightly better chance for a complete remission. But it is important to mention that I have the thing on the ropes right now, and maybe the medium dose will be all I need to put it away for good.

All of the doctors on my team were supposed to meet at 3 p.m. today to discuss my case. It was predicted that they would be split down the middle on their opinion on giving me the higher treatment. Do we violate the protocol to give me a slightly better odds?

Tomorrow I will be getting the catheter installed in my chest, and will hear the results of the meeting. Afterwards, it will be up to me to make the decision on my treatment. It is ironic that you read all of the statistics, and weigh pros and cons of each option, yet in the end, it will be my "gut instinct" that will make the decision.

In the end, I know that I will be able to make the right choice. Or maybe I'll just flip a coin.

Long Weekend in New York

This past weekend, I drove back home to upstate New York to visit family, and to bring back my mother who will be reprising her role as caregiver this fall. I'm an hour or so away from leaving -- the only thing stopping me now is a little packing and some breakfast.

Once we get back in town, it will be a rush to get my apartment optimized for my recovery process. What's that, you say. Yup, this time I've decided not to move to Boston for my treatment.

When I got sick last year, I had moved from my apartment in Melrose (a suburb about 30 minutes north of Boston) into a temporary housing situation smack in the middle of Boston. This had some nice perks, such as separate apartments for my mother and I, easy access to Back Bay, the hospital and numerous other walker-friendly areas.

Although it was walker-friendly, it wasn't so wallet-friendly. After shelling $8,000 on rent for two months, and a couple thousand more on moving and storage, I decided that this time, I'll stick it out in Melrose. And besides -- I have moved four times in the last year, and I would be damned if I had to do it again.

Unfortunately, when I got my apartment back in April, I took a bet that I wouldn't need a second treatment. (Obviously, you can see that I am not a gambling man.) As a result, the apartment is, shall we say, not the most optimal for recovering from high-dose chemotherapy. The apartment is a loft, and the one bathroom that I have is on the top of a set of steep stairs. Ok, so I'm an idiot for getting it but it is nice in every other way!

Tomorrow is August 16th, the official admission day. A lot of fun for all parties involved, I'm sure. I'll be reporting the play-by-play as it happens.

The PFT

This afternoon began the first of many, many visits to Boston Medical for my second stem-cell transplant. Today -- a visit to the main building for a PFT (or Pulmonary Function Test for those of you who hate acronyms). This test gives an accurate assessment of your heart and lung function. I didn't know why I was asked to do this test at the last minute, but my guess was that they were going to use the results to help decide the amount of chemo I would receive the second time around.

If you aren't thoroughly versed in the details of a Pulmonary Function Test -- today is your lucky day, because I'm going to describe it to you. Actually, the name is a misnomer, as it is actually a series of tests, each designed to test the limits of your pulmonary and respitory systems. A triathalon of heart and lung function, if you will.

The first "test" isn't really a test at all. A technician draws blood out of an artery in your arm to gauge the amount of carbon dioxide in your system. Yes, I said artery. But not what you're thinking. They actually get their feed from an artery in your wrist. It's not too bad, but the needleprick is a little painful due to the high amount of nerve endings in your extremities. Blood is drawn, and you are done.

The second "test" involves a series of breathing exercises. You are brought into a room with what looks like a glass phone booth, which is connected to a computer. Inside the glass booth is a series of tubes, which end at an open pipe for you to breathe in.

Don't worry, they don't lock the door.

Once inside, you do a suite of exercises. For example, one involves taking a really deep breath, then exhaling it out as fast as you can. But once you've exhaled, that's not enough. They want you to exhale every last bit of air in your lungs! At the end of 10 or more seconds, you feel as if your diagphagm is in your throat. It's a pain in the ass, but not too bad.

The final "test" involves your heart under stress. A CO2 and heart rate monitor is slapped on your finger. You then walk with the technician back and forth down a long hallway. Once you've done this for a couple of minutes, you then walk up six flights of stairs (if you can). All of that walking in Boston this summer prepared me for this task, and on the 6th floor I was calm and relaxed. The technician, however, was not faring so well. I asked if he wanted a breather before we made the trip back downstairs.

---

After finishing the test, I was able to bring my test results over to next building and hand them directly to my primary doctor at the clinic. (One of the benefits of having a rare disease -- all the doctors know who you are.) "How many floors?", she asked, as I turned the corner to the amyloid wing. She knew why I was at the hospital today, and knew that I had just finished a PFT, which impressed me. "Me, or the technician?" I replied, with a faint smirk.

She reviewed the results quickly, as if it were the front page of the New York Times. With a curious grin on her face, she replied, "This is great. We need to talk next Wednesday about the [chemo] dose we are going to give you. I thought that we were going to give you 140, but now I'm not so sure."

"What do you mean", I asked. Oh geez. I knew this test had something to do with the chemo doses. A feeling of dread came upon me.

"Well, because you did so good, maybe we'll give you the full 200 again."

"Oh... that's great", I replied. So much for this time being easier.

--

That melphalan is some seriousstuff. I recently learned that is was the main component of mustard gas, which killed thousands of soldiers in World War I. With amyloidosis, the only major weapon in your arsenal is the melphalan. And, of course the stem cells after they totally destroyed your immune system. Generally, the higher the dose, the better the chance if will wipe out the "factories" in your bone marrow that are causing the disease. But the doctors will only give you what they think you can tolerate. For high-dose chemo therapy, most patients get between 125-200ml of the nasty stuff. As I can personally attest to, it is not a pleasant experience, and you are quite miserable for a couple of months as your body deals with the aftershocks of all that random cell destruction.

I got the full dose the first time, and I still feel the effects today, 13 months later. It's a blessing to be told that I can handle another full dose. What would another full dose do to me? Can my body really handle it?

That's a question I'm not going to worry about this weekend, I'll have plenty of time to freak out about it next week.

Storm Approaching

The clouds are coming in. We're now within two weeks of my admission to BUSM for my second stem-cell transplant. With each passing day, my mood becomes more somber. The benefit of knowing what to expect is also a burden, for I know that there is another long battle ahead. It's hard to keep a smile on your face knowing that the next few months will be very unpleasant.

One of the things that I regret not doing prior to my first transplant was not stuffing myself with my favorite foods prior to starting treatment. I wasn't really able to do this prior to my first transplant, as I had a tooth pulled just before I began the treatment, and I wasn't able to eat anything solid for a couple of days. This weekend, I loosened up my diet a bit, and ate out at a couple of my favorite places. Ate some sushi, munched on some cheese and crackers at a party. As a result, I gained three pounds of fluid in my legs. Sigh. It seems that no matter how I try to enjoy myself, I seem to suffer in some way.

On a bright note, I got an e-mail from the hospital stating that my insurance company has improved the second transplant. This is one less thing I'll have to worry about, and I am very thankful for that.

There have been gaps in my postings as of late, but you'll find that once I'm admitted next week, there will be a flurry of activity. Stay tuned.

Steaming

We're currently in the middle of a terrible heat wave this week. The all-knowing weather men have suggested that we may reach 100 degrees today (around 39C to all of you gentle readers outside of the States). At this level, one can no longer complain that "it's not the heat... it's the humidity!" because it is the heat AND the humidity. Nothing you can do except hide underneath a rock and wait it out. As for me, I've been trying to avoid going outside, as the heat saps my energy and I start to swell.

Yes, It is a real "swell" way to spend the last two weeks before I undertake my second transplant. I am conflicted how I feel in having this remaining time to do what I want to do, eat what I want to eat, and generally do the things that will be impossible to do in a few weeks. On one hand, I am grateful to have this time to be active and mobile, but on the other hand, I'm still restricted in what I can do, so part of me wishes to start it and get it over with. If there's one thing I am sure of is that by the end of this month I will not be a happy camper.

They say that the second transplant is easier than the first one. After meeting with other amyloidosis patients who have had two transplants, there appears to be some truth to this statement. There could be many reasons for this. Perhaps it's because you been through it once before, you know what to expect. I will have all of my supplies ready prior to starting this time. The symptoms and side effects of the chemo will now be familiar to me. I am in much better shape than I was one year ago... that's for sure.

July 2005 - not a good month

Perhaps most importantly, I know how to address my edema this time -- something I couldn't do last year. Retaining fluid reduces mobility and causes your body to work harder. Although I am struggling with 2-5 pounds of fluid on me presently, that is nothing compared to what I experienced last year. Here's a shot of my legs right after my transplant, when I had 25 pounds of fluid on me. I would gain another 10 pounds before the doctors were able to manage it properly.


Psychologically, I would think that the second transplant would be more difficult. Your mindset shifts as you realize that you are not fighting a brief excursion, but in the middle of a long, drawn out war. The constant feeling of illness in your system starts to wear you down mentally. And having a healthy mindset is a very important weapon for fighting any serious disease. I don't believe that you can win without having one.