Healthier today …

than I was when I was admitted in to the hospital. Take a at my blook numbers from the day I went to emergency room on February 9th, with those from this past Thursday.

Date	Day	WBC	ANC	Hgb	PLT	Transfusions
10 Feb	Day -3	4.9	147	10.8	25	–
31 May	Today	1.1	264	11.2	68

Admittedly, I had a few more white blood cells back then, but remember that nearly every blood cell was a leukemia blast. And while they’re been showing up in minuscule amounts in my blood now, we’re not talking about anywhere near the amount when we started.

Day 5 – getting ready for Chemo

I could see in my life getting ready for a lot of firsts: first little-league baseball game, first schoool play, first prom. But to say I’m getting ready for Chemotherapy for the first time sounds odd. It’s so random. And yet, I am. The Hickman line helps to deliver the chemo, and the anti-nausea drugs which are supposed to be really good today.

This morning I asked my mom to gather up a few more photos from my apartment to bring in. And this is a reminder to everyone else that the photos / visuals are needed ASAP. Chemo begins tomorrow and I’m going to want to see everyone right away.

I haven’t finished reading over the trials papers yesterday for the new drug trial and I am having trouble understanding some of it. It’s a little overwhelming to present something like that to a patient the day or two before they start on chemo. There are enough disturbing choices to be made already.

I just find it ironic that a week ago today I was getting ready for a code release and now I find myself facing a poison-release on my body … and they’re both voluntary. How weird is that?

I’m really focussing on the chemo today in advance of treatment tomorrow. I’m reminded of Socarates’ last words, “I drank what?” I can’t help but find those little quips.

Anyway, must dash. There are two more people I need to call and let know what’s going on. And breakfast has arrived.

Day 4 – early evening

So during the day, I spoke with my oncologist. I have Acute Myelogenous Leukemia. I can’t explain how this is different from the other type. We also discussed treatment. The preferred approach today is to give antitumor anitiotics with antimetabolites (chemical similar to the building blocks of DNA but are changed sufficiently from the natural chemical – they block the cell’s ability to form DNA, preventing further cancerous growth). The current intention is to administer idarubicin and cytarabine.

Today, I also learned that I’m eligible to take place in a trial that would replace the idarubicin drug with a higher dose of daunorubicin. The study is trying to determine if fewer chemo sessions would be necessary following a higher dose of the antitumor antibiotic. I’m considering participation in this trial and need to look through the papers more. I really grilled the nurse who presented it to me this afternoon – these things are done so “medically” that any lay-person would find it very hard to just get the gist of what they’re trying to do and what the possible reprecutions, side-effects, etc., are. I am favoring doing this trial though – I have nothing to lose and a lot to gain.

We still don’t know which chromosome pair further identify my form of the disease. We should know that tomorrow, which will also contribute to prognosis and schedule of treatments. We have, however, ruled out M3 – Promyelocytic … this would require a completely different course of treatment.

I’m in a little pain after the Hickman and the Oxycodone has kicked in so I need to make this entry short. Tomorrow, I have some housekeeping to do in terms of the dog, paying bills, etc., and then I think on Thursday, I’ll be starting my chemotherapy. < head spins >

Day 4 – mid-day update

This morning, had my Hickman line installed. This means no more IV lines on my arms and hands. These are tubes that enter the body through the chest. I have three tubes exiting the hole. It’s not gross at all – it’s all very clean. And it means no special sticking is needed to draw blood, give meds, etc. They took me down at 10am for this 15 minute procedure and I was back in my room around 2. It was really busy down there. But I go to sit and relax. Like I could even go anywhere else?

The emotional (and divine) side of what’s happening

Posts to-date have all been factual, and that’s what I really wanted this blog to be for my family and friends – I wanted to keep them all in the loop, and maybe a little distant from the emotions that swirl around this, because they’re everywhere and they are so intense they are difficult to manage. So I really haven’t included any of the short side stories of a more personal nature, though I will. But I wanted to share one from tonight.

This evening, I was doing research at cancer.gov, where they wrote that 80-90% of AML patients go into complete remission after chemotherapy. 10-20% have relapses – most are older people. For people who do not get treatment, for people who at this stage in the disease such as I am at right now, they have an estimated 3 to 4 months to live. I broke down and cried. From the moment I heard the news that I had Leukemia, I struggled with a crisis of faith.

My family is planning a reunion for June – inviting relatives from all over. There was concern about one of the matriarchs attending. She had become quite ill and no one was sure if she would make it through to June. I cried tonight with my mom, because I realized that though this cousin had died, I would have been the cousin who would have died right before the reunion putting everything in jeopardy had I not actually gone and sought help.

My mother chalked it up to divine intervention.

But there is another part to this story.

On the Jewish Day of Repentence, Yom Kippur, we chant many incantations about who shall live, and who shall die, who by fire, who by water, who by heat, who by cold, etc.. It’s a long list. And after I got the diagnosis, all I kept thinking was I was on the die side of this equation.

But as my mom and a visiting hospital rabbi pointed out, we are reminded that teshuvah (repentence), tefilah (prayer), and tzedakah (acts of charity or compassion) will annul the severity of the decree.

But I didn’t do enough repentence. What? my incredulous friends are shouting. Rosh Hashannah, Yom Kippur … Yes – but in my prayers, was I as focussed as I could have been? Honest? Truthful? Yes. Soul searching? No. There are still times when I breeze over the hard parts. Tzedakah – I have always been a generous person and an enjoy being a support of the arts in both my home NYC, and my current city, Philadelphia. Prayer. Prayer hasn’t been high on my list in a long time. It used to be. But it went away. Until I moved to Philadelphia. Ever since I got my apartment here, I lit candles on the Sabbath, said the prayer(s) over them, blessed the bread, blessed the wine … having kabbalat shabbat at home.

This is not an equation for getting closer to G-d or getting G-d to anul his decrees against you. But I’m finding that as I face the biggest life-threatening challenge of my life, I started to address one of the bigger spiritual ones. I know there’s a nugget of something in there, but it’s so ill-formed.

How to tell family and friends?

There are still a number of family and friends who don’t yet know.

 On the family side, my father’s side is fully up to speed. On my mother’s side, her maternal side only one cousin knows right now. I don’t know if he’s said anything – I wouldn’t mind if he did, because it really shouldn’t come from my email to a large anonymized BCC’d group.

With friends – I’m trying to get to everybody. Had some amazing support. Wish I can call everyone back, but I’m overwhelmed with calls … plus more, unexpected visitors came this evening … so I’m trying to deal with that, and I’m reading up on more of the technical aspects of AML so I can have some good discussions in the next few days with my doctors.

Early evening update

The HEMONC resident stopped by this evening to let us know that he thinks it’s looking like AML (Acute Myelogenous Leukemia). I can’t for the life of me explain how it differs from the other one, but my impression is that with AML, the treatment options and prognoses are good, although there is still some testing to be done for my specific case.

Day 3 – early supper time

It’s just about 5pm on East Coast when I started writing this post. After writing the last posting, I was whisked away for a dental exam. Now for those of you who don’t know me – or know me very well – the dentist scares the living daylights out of me. Long story — for another blog. But this was painless. Stand up. Bit on the bit. Buzz, whirl, whirl, and they did a full shot of all of my teeth.

Patient transporter picked me and took me to my PET scan. Woohoo! Two injenctions, I was glowing. Machine comes in and gets nice, close and personal. After about 15 minutes I said something to the technician like I’m getting a little claustraphobic and her response was “just another 3 seconds”. But 3 seconds elapsed and I was taken up to my room where I found my mom sitting with a strange guy.

Turns out this guy is a very distant, non-blood cousin on my mother’s brother-in-law (my uncle). I knew he lived and worked down here and had wanted to be in touch earlier, but just wasn’t. I think it’s just great that no matter how thin the blood is, that he was there. Of course, it’s also beneficial when he’s a researcher at the same hospital. While we were talking about the general situation at hand, my doctors came in. The big guns.

A serious discussion on chemotherapy ensued. A question I asked was (this is somewhat parenthetical) “So why do we nearly have to kill a body in order to know if bone marrow can produce any good blood cells? Isn’t there a way to test the bone marrow even while it’s defective to find out if it can do a better job if the cancerous cells weren’t in the way?”

I am astonished at the barbarism of chemotherapy. Now being faced with it myself, I don’t mind telling you how much more stomach-churning it now seems. However, there are great advances, so they say.

But if you’re looking for the answer above, it’s this: there are tests for such things, but they have not yet proven reliable. Chemotherapy, while barbaric (my word, not my doctor’s), is certain to show whether the body can produce good blood cells on its own or not.

That’s the real shocking part for me. I have to practically kill myself with this poison to determine if my own body can produce enough of the right kind of blood cells. If not? Bone marrow transfusion and other therapies. We haven’t gotten that far yet, but we’re hoping tomorrow.

Later this afternoon I did the bone marrow test – yeah, it’s pretty intense …. needs going into the bone to scrape out some marrow. Did it from the hip – literally … my hip. Didn’t hurt. Some pain in the middle of the procedure with one of the scrapes, but not intollerable. The adavan kept me pretty calm throughout. Procedue done in 15 minutes.

OK. Now I’m ready to eat.

Day 3, first posting

Doctor Kevin just came in to see me this morning. I’m going to get a dental x-ray today to get a better look at the area that’s affecting my cheek. I’m also supposed to be getting the bone marrow test, but he needed to consult the HEMONC (hemotologist oncologist) specialists. (I actually like that acronym, HEMONC.)

Even though I took a sleeping pill, I found it very difficult to sleep last night. The enormity of the situation is starting to weigh heavily on me: just how serious a disease this is, what chemotherapy actually is, how long this will go on for — and it raises all sorts of other questions about my job, my income, my dog, my life. I have no answers, only questions and I know I need to wait another few days but it just seems like my entire life is in the balance of knowing what kind of Leukemia I have before I can figure out anything next. I’ve never been faced with a threat of this magnitude. I’m trying to be strong and positive, and I know I can put on a great outward face, but inside, I don’t know if I’m equally as resilient.

Days 1 and 2

After I got the call on Saturday, I needed to show my mom around my new apartment, get her acquainted with where the trash goes, how to walk and feed the dog, how the kitchen is organized, etc., and then we headed over to the hospital. I spent many hours in the ER just waiting for my room. Finally, late in the day, they moved me up to Rhoads 7 which is the oncology ward. I have a nice, large, private room. Lots of urgly walls and bad lighting. And yes, I think I can complain if I’m going to be here a while! (Although I know there’s nothing to be done.)

Mostly on Day 1, they drew a lot of blood and did a CT scan on my face to figure out what was going on with the swelling. Later, they did a chest x-ray and late that night they did another CT scan, this time with contrasting dye. I found it very difficult to get to sleep that night. I’m on several anti-biotics (cefepine, flagyl, voriconazole) all trying to help treat the infection I have as a result of the Leukemia. And, as with most people, my body temperature went up at night, and while that’s ordinarily no cause for concern, for leukemia patients it’s a red light: it could indicate an infection in the body and since I have essentially nothing left of an immune system, they had to draw blood, which I can tell you as less pleasant at 1:30 in the morning when you’re trying to go to sleep than it is at 6:30am when they wake you up the next day.

Day 2 was fairly quiet. Meds on the IV. My mom brought over the laptop. A group of my closest friends came down to visit. Spoke to many many people. It’s been difficult getting in touch with everybody, partially because there are so many people to reach out to, and partially because I’m starting to grow weary from telling the story over and over again. Plus, when I talk, I’m scraping the inside of my cheek where it’s swollen and that makes things very uncomfortable.

No major tests on Days 1 and 2. Bone marrow test is scheduled for Monday (Day 3). That will help determine what kind of leukemia I have. But more on that later.