A Healthy Doctor Sam

Day +16: Tired, but Gaining Strength

The last two days have given us a lot of reason to be optimistic and cheerful!

For starters, yesterday Sam ate a vanilla pudding. And kept it down. Impressive, no? Today he drank a vanilla Ensure... and threw it all up. But still, it's great progress for him to be eating food through the mouth instead of only through the IV. Of course, Sam isn't intimidated by a bit of nausea and later this afternoon he got back on the horse and ate an orange Italian ice without incident and got lost in a bit of fantasizing when I told him about the croissant and strawberry jam that I had eaten for breakfast.

Other good news includes a noticeable absence of transfusions the last several days, and some spectacular blood counts this morning, thanks in part to regular doses of Neupogen and perhaps also to Normy's high quality stem cell donation. The swelling in Sam's legs is still causing him discomfort, but it's finally beginning to abate, and his mouth is practically pain-free. Yesterday he almost got to stop taking his prophylactic antibiotics, but he briefly spiked a bit of a fever two nights ago so the antibiotics remain but soon they will be pulled from his tree of IV bags and pumps and tubes and cords, simplifying his life a little bit. These steps are small, but they are pointed in the direction of home.

Unfortunately Sam is so exhausted that he appreciates all these positive developments through a groggy haze rather than with giddy enthusiasm. Growing a new immune system is an exhausting business and despite never being more than six feet from his bed, Sam doesn't get much good sleep. It's hard to rest comfortably with a catheter poking out of one's chest, and the nights are punctuated by the taking of vital signs and changes of IVs. But even on this front things are improving: he started taking Ambien to get a running start at bedtime and when he wakes up in the middle of the night sometimes he wanders over to the vinyl couch and sleeps there for a while. For a change of pace. (If you send him emails, there's a good chance he's reading them from that couch at 3:00 am!)

I, for one, am pretty happy that the biggest hurdle Sam has been facing the last two days is feeling groggy and worn out during the day. Even though he's exhausted, Sam's wit has come roaring back with surprising force: he's popping out the one-liners and clever wordplay at unexpected moments, often through half-closed eyes, but with a droll smile.

Day +4

So it figures that, right after I post my Day +1 cheery "I'm doing okay" speech, I'm suddenly not doing okay and not exactly feeling well enough to blog about it.

This will be a quick one.

Yesterday I had my first really hard day. High fevers (expected), blood transfusions (expected), and increasingly worsening mouth and esophageal pain (expected). And things aren't any better today, and no reason to think they will be anytime soon.

Folks, this is the hard part that I was talking about before. The consensus seems to be that things will keep getting worse before they get better, and not until about Day +10. So it's going to be a rough few days. I'm not sure that I'll be able to keep you posted during this time, but I'll try.

Day +1: Hanging Out

So it's most of the way through Day +1, and I'm doing okay. I've actually had a relatively good day today, and managed to finally channel some of my restlessness (imagine a combination of restlessness and fatigue, if you will) into a decently active day. I've read two magazine articles, caught up with a week of the NY Times Dining section (yes, I'm still reading about good food, despite my inability to eat!), emailed and chatted a lot, entertained a few visitors, and now even gotten to this blog post. That is a lot for me in a day, these days.

I've had a lot of pats-on-the-back for having gotten this far, and through the transplant. And indeed, what a huge deal it is. As my mom pointed out yesterday, this has been an enormous thing that we've been hoping for for months, and now it's actually happened.

I'm quite sober, however, about the fact that the hardest part is still ahead. Right now, my most bothersome problems are fatigue, mouth pain, and nausea. As I had mentioned, I haven't really eaten any solid food since last Tuesday (and I've lost about 18 lbs.--I'm already slated to start Total Parenteral Nutrition, i.e. nutrition via I.V., tomorrow) But the truth is, it's going to get a lot worse and riskier before it gets better. I'm told that the real pain starts in a couple of days, and +5 and onward is really not a picnic. You have to remember, that my immune system is now completely gone, and the side effects of the chemo and radiation are just now setting in. It'll be two weeks before the new stem cells engraft themselves, so it's gonna be a long couple of weeks!

One good thing to be hopeful about is that I was transfused eight million stem cells, the maximal number allowed at MSKCC, thanks to Normy's generous and successful donation (he was able to pump out even more than that!) Theoretically, the more cells transfused, the more successful and sooner the engraftment.

I didn't think I had a blog post of this length in me (you've seen how the last few have been pretty terse and factual) but the fact that I did goes to what I was saying in the first paragraphs above.

So I'm happy I'm having a good day today, and hoping that I have more of these and less of the nasty ones, in the inevitable forthcoming fortnight.

Day Zero: It's Dripping!

That's right, the transplant is happening as I type this. Sort of "live blogging" it, you can say...

Other than a bit more pomp & circumstance (the attending herself had to be here and verify some forms, everybody ooohed and aaahhed a bit...) it really is just like getting a blood transfusion.

Here is what the stem cells look like, for the curious among you:

(only the red bag is relevant... all the clear vials and bags are my status quo)

Oh, and for those of you who were wondering about the "creamed corn" smell that I had mentioned, apparently I was mistaken--that is only present because of a preservative that is used in freezing autologous cells, so not in this case.

This bag here is straight out of Normy's veins yesterday. Has not even been processed or anything! (Analyzed, yes. Processed, no...)

Day (-1): Resting Up.

So after 4 days of high-dose radiation, and 4 days of high-dose chemo, they've stopped doing stuff to me, and I supposedly get to rest today before tomorrow's transplant.

Of course, the nausea, vomiting, diarrhea, stomach cramps, weakness, etc., don't all stop on a dime exactly, so I'm still putting up with those. But hopefully they will abate now that the chemo has stopped.

I have been told, however, that the day you hit rock-bottom is not until after the transplant, so we shall see.

Normy has been donating cells yesterday and today, and from yesterday alone the numbers look very good... almost 6 million in one day.

For all of you who have individually emailed me, thank you so much, even if I have not gotten a chance to respond in kind. I am really on the computer only a few minutes a day, and don't get to most things.

For those asking about visiting, visitors are definitely welcome and appreciated! All that is asked is a mask and some gloves. Oh, and please, no need to bring anything.

Otherwise, I'm just sitting around trying to make do with the side effects, and dragging this thing along:

That's my I.V. pole "tree", with six pumps, and who-knows how many bags of medication, all somehow funneling into my three catheter ports. It's a bit unwieldy to say the least!

Day (-7): Happy New Year!

So this will be short, because the news of the day is that I have zero energy.

It's 5:30 pm and it's the first time all day that I feel awake, but barely. It's amazing how much energy this radiation has zapped out of me. Oh, and I haven't eaten any solid food since breakfast on Tuesday. Too scared that I'd throw up.

I have not had any fevers lately, and a CT scan that I had yesterday to investigate my fevers was read today as normal--All good news, and leaves me feeling much less anxious.

Finally, today is the first day of the Persian New Year Nowruz (and the beginning of spring, not so coincidentally...) I was not able to spend it with family, but my aunt did manage to put together a traditional Haft Seen place setting for me, hermetically sealed in containers in a beautiful little cube that could be brought into my neutropenic room, and it is now sitting on my shelf here!

I've spent almost the entire day asleep, and I don't know how much longer I can stay awake. And my attention span seems so limited that I can't seem to type this and listen to the news on the radio at the same time. Very strange.

Day (-9): I Got Nuked Until I Puked...

I'm trying really hard to stay awake enough to eek out this blog post. I'm so beat!

[Edit: Actually, I couldn't do it... Fell asleep! Now I'm putting on the finishing touches the next morning!]

The day began pretty nicely; I was feeling well and not having any fevers. I was supposed to have three sessions of TBI today, a few hours apart, so we needed to start early. But due to some equipment failure, things got delayed and I didn't go until a little before 10 AM.

They told me that the first session would take a little longer, because after lining me up in the machine, they would need to take an X-ray to make sure things were lined up as previously planned. After that, the treatments would just involve standing still for about 10-15 minutes. Unfortunately, the X-ray and alignment proved to be a game of trial and error, and they had to keep repeating it 5-6 times before they were happy. This whole time, I'm standing in what can be described as a plexiglass box, adjusted so I have no room to move or even nudge in any direction! Finally, things were good and they fired up the beam for the actual therapy.

It's a bit surreal. The machine looks like a giant cannon (it is, actually, a linear accelerator...) They point the business end at you from across the room, and make you stand in this plexiglass frame. Then the room door closes (one of those 2-foot-thick vault-like jobs) and they fire away. It even makes a "BZZZZZZZT!" noise, just like ray guns do in the movies.

After my first session, my only complaint was that the standing around and adjustments took forever. the treatment itself was fine, and that's the only part we'd need to do from now on.

By the time I had returned for my second session, I had again had some mild fevers and I was having chills, leaving me worried yet again, and also not physically feeling so great. When I was in the Radiation Oncology waiting area, one of the nurses milling about came up to me and said "Have you thrown up yet?". "Yet?" Perhaps she knew something I didn't!

I got strapped in to the plexiglass gig for round two, this being much quicker since they had pre-made measurements. But just as everyone exited the room and the vault door closed, I started to feel nasty feelings in my stomach. I banged around and yelled a bit, and they came back in (after waiting for the 20-second vault opening sequence) and as soon as they had me untied I was puking into a basin. A little bit of vomiting and a little rest was surprisingly cathartic, and I suddenly felt a lot better. Got strapped back in, and did the first half of the therapy no problem.

Then they reversed positions for me to get the therapy to my back. I was still feeling okay, and this would only take about 7 minutes, so onward we went. Let's just put it this way: There was such a rapid decline in my comfort level during those minutes. By about halfway through, I was getting queasy. With about a minute left, I really needed to throw up. But I did really just prefer to get it over with. When she gave me the "30 second" notice, I remember yelling "I'll make it, but afterwards you've gotta get me out of here fast!"

I became so lightheaded, that I think if they weren't holding on to my I would have passed out. They sat me in a chair, and I immediately vomited a couple of very painful times.

Back in my room a bit later, I was totally beat. Still nauseous, exhausted, and still the occasional chills. I had already been on a continuous IV drip of Zofran for nausea, and they gave me some Ativan to boost, and the latter helped put me to sleep.

I spent most of the day groggy and half asleep. My third radiation for the day got cancelled because of their equipment problems and backed up scheduling, and so will have to be made up later in the week.

By late evening, I was starting to feel well. I finally got out of bed, made some phone calls, started this blog post, etc. I was even feeling well enough to try to eat some Jell-O and lemon flavored Italian ice for dinner, which went down quite easy. I also sipped on a bit of cold soda.

But alas, an hour later, out of nowhere, up came everything. Thankfully I still had the empty cup from the soda sitting next to me, otherwise this computer would have been a mess.

So that was my night. Some more Ativan, and then to sleep again.

Day (-10): I'm In!

It has been a busy couple of weeks--as I had mentioned before, I've had lots of appointments and testing leading up to the transplant. Everything has checked out, and things are now underway.

On Monday, I arrived here at Sloan-Kettering. I was scheduled to have a Hickman triple-lumen catheter placed. The procedure itself took all of about 15 minutes, but it required arriving at the hospital at 10:30 AM and then being moved around from one waiting room to another until abut 3:30. Finally, it was done and I got to go and move in to my new Upper East Side pied-à-terre, on the 8th floor Transplant Unit of Sloan-Kettering. I don't exactly have the biggest room on the unit, and I definitely don't have a nice river view. But since I'm going to be a long-stay tenant, they might move me to a better room should things empty out.

I had a little bit of a fever on Sunday night and Monday morning, sort of out of the blue. This had me quite worried, both because I didn't want some infection to throw off the very intricately planned transplant calendar before me, but also because the last time I had unexplained low grade fevers, it turned out to be a big problem. Thankfully though, it seems that things have resolved--I have not had any fever since yesterday afternoon, and we'll probably go ahead as planned.

Speaking of the calendar, a word about terminology: The day of my transplant is considered Day Zero. Negative numbers count down until then, and positive numbers will increment the days after. With the current schedule, I'm to have 4 days of Total Body Irradiation (TBI) starting on Tuesday (Day -9), then 4 days of high-dose chemotherapy, then a day of rest, and then the transplant on Thursday of next week. Of course, any unplanned events might change the transplant date, and thus the numbering scheme. But now we're all on the same page. I'll probably be in the hospital for about the first 4 weeks or so post-transplant.

Day +100 is a key date. The first 100 days after transplant are the most risky, and making it to the 100-day mark in one piece will be a big milestone. If the current transplant date holds, that will put us at 4th of July weekend. Now that will be one celebratory barbeque!

By the way, who wants to see my new tattoos?

Yes, the keenly observant among you noticed the little post on the right side of this page last week, announcing that I had gone out and gotten myself a couple of tattoos before this BMT business. I promised pictures to prove it, so here you go:

(Excuse the web-cam quality photography... But do note the fancy fashions as well as the Hickman catheter...)

What? You don't see it? Did you look carefully? The black dot on my chest, centered between the ends of my collarbones. That's the first tattoo. The second is at a corresponding spot on my back, though I have never seen it myself.

Did you think I was talking about a big cupid or Harley-Davidson logo or something? :-)

I got these little tattoos when I had my simulation session for the TBI last week. They will serve as markers so that the techs can align the machine with my body the same exact way each time. Having been told this explanation, you might respond with "Why not just use a Sharpie??" Well, the mark needs to stay put for a few weeks, and we can't risk a smudge!

Anyway, that is all the happenings for now. I will try to post a Day (-9) entry this evening, telling you all how the day went (and my first actual TBI session, which will be any minute now...)

Oh, I should add a word about getting in touch with me, since some have asked. I don't have a room phone, but do have my cell phone here. I also (obviously) have internet access for email and chatting (sam_moghtaderi on Skype, sammoghtaderi on AIM, and just moghtaderi on Gmail--though the latter doesn't seem to be working from here). And if you've got a webcam, well we can do that too!

The Next Step: Updates Soon!

It's been a pretty busy week, as I prepare to move forward with the bone marrow transplantation. But I'm exhausted from a lot of early morning wake-ups (which apparently I am no longer used to!) and long days, so a full and detailed blog post will have to wait a bit...

For now, a few key pieces of information that I wanted to share:

• After 4 rounds of DNG chemotherapy, I had a PET/CT scan this week, and the early word is that it's completely negative!


• Both Nariman and I saw Dr. P of the bone marrow transplantation service on Thursday, and we are busy for the next week with all of the testing required before transplant.


• I'm tentatively scheduled to be admitted to the hospital on Monday, 17 March 2008. The first 9 days will be for radiation and chemotherapy, and on 27 March I'm scheduled to receive the transplant itself.


• I'll probably be in the hospital for about 4-5 weeks after the transplant.

That is the gist of it for now. I'll write some more in my usual descriptive and overly wordy style soon, and fill in all the details!

"Honey... I Shrunk The Tumors!"

I've been doing very well, at least physically, since I got some steroids and then started the DNG chemo one month ago. The fevers, chills, and malaise that heralded the relapse of lymphoma around New Year's Eve have not returned at all, and I've felt good.

Of course, we've been somewhat in the dark about the effectiveness of this new therapy. I've mentioned before that it was just a wait-and-see for now, until Dr. H re-did my scans. For the time being, we were just relying on the fact that I felt physically well and that my blood tests were fairly normal.

Well, in the chase to keep up with my constantly sinking platelet count, I've had my blood drawn every couple of days the last two weeks. Incidentally, this showed that my liver enzyme tests had also crept up rather high. When I first relapsed a month ago, my liver enzymes were the only blood test abnormality that I had, and just barely (you will recall that this whole lymphoma problem presently lives in my liver). Normal is up to about 40 or so, I was in the 60's. Over the last two weeks, I've been as high as 280!

Here we are after a few weeks, hoping to see it go down from the 60's back to normal, and instead it had more than quadrupled. As usual, I was worried, and Dr. H tried to be optimistic. He pointed out that he wasn't going to jump to any conclusions, since while this could be due to growth of the tumors in my liver, it might have also been a result of the activity caused by the chemo. We would monitor it a little while longer, and as long as it went down rather than up, we'd sit tight.

On Thursday of last week I saw Dr. P (my new transplant attending), and Dr. H used this opportunity to re-check my liver tests. No change, still in the 250's and up.

On Friday, I got a call from Dr. H's secretary telling me that he had ordered a new set of CT scans for me to have done Tuesday morning before my visit with him. On the one hand, I was glad that he was going to look into this and figure out what was going on. But on the other hand, knowing that something here was concerning him enough to suddenly change his mind and act only left me more worried than before.

Tense. That's really the best word to describe how I've felt for the last 4-5 days. The worry and anxiety that I already had about this chemo failing were only exacerbated by anticipation of the upcoming CT scan. Every fleeting abdominal pain or discomfort (and believe me, I have a lot of those, with all the constipation and laxatives) left me paranoid. Was my liver totally gone by this point? Filled with growing gobs of lymphoma which were by now immune to all chemo we could throw at them? It may be true that we cancer patients have more hypochondriac tendencies than others, but for the last few days I was way beyond even that.

Tuesday morning I woke up at the crack of dawn to get myself to the MSKCC diagnostic imaging unit in mid-town in time for my 8:00AM appointment. By this point, nervous as heck, but ready to find out the answer, my only coping mechanism was distraction and avoidance of any thought on the matter. I read the paper, browsed the internet, and just tried to not think about lymphoma as I drank the awful-tasting, Crystal Light-flavored CT oral contrast dye for an hour. The same continued after the scan, as I traveled to the hospital and did the requisite waiting around for an hour before getting to see the doctor.

I ran into Dr. H once or twice in the office hallway before we finally had a chance to sit and talk. And it was after only a few brief pleasantries that he got right to the point.

"Your scan looks fantastic."

I just sighed outloud at that point, and put my hands on my head.

On the left is a sample image of my liver from the CT scan of 3 January. The green circle shows one of the lymphoma tumors in the liver--There were many more like this on other parts of the scan, maybe 10 or so in all. The right image is the same part of the CT, as seen on 12 February. Note that tumor is not really visible anymore. This was also the case with just about all of the other lesions in the liver. (click for bigger picture)

So I threw all of my worries from the last 3 weeks out the window. This chemo is working! It seems like Dr. H's alternate theory was correct, and these blood tests have just been elevated as a result of the liver tissue rebuilding itself, rather than from destruction by tumor. We're going to go ahead as previously planned and do two more cycles of DNG, and follow up with a PET scan after the final cycle to take a better look (the CT scan isn't sensitive enough to see the smaller bits of tumor that the PET can, nor to declare a remission). If all goes well, it's then straight into the bone marrow transplant.

The entire rest of the day, I was continually amazed by how much my mood had turned around. Not just compared to the last week or two, but even the last two months. I can't remember the last time I was this optimistic about the road ahead. Yes, the situation still sucks, but it suddenly doesn't suck nearly as bad as it could, and suddenly I'm actually excited again to beat this.