Back in hospital now

Was admitted this afternoon after some initial administrative issues. Had the procedure to install my hickman lines and am resting comfortably before moving me to my bed up on Rhoads 7. More to come.

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50% solution

Visiting the oncologist today was unlike any other visit: it was actually not just busy, but crowded! And it seemed like quite a social gathering. After a couple of false starts to get my bloods drawn and get in to the the doctor (with my chart missing, nonetheless), we finally heard that the bone marrow biopsy done last Friday looked like it hadn’t been analyzed yet. < shock! > < horror! > We were going to have to wait for an analysis to come back this afternoon from pathology.

The wait was almost agonizing had it not been for a great visit with my cousin, James.

Finally around 7:30pm tonight, we heard that the bone marrow biopsy was showing 50% blasts in the marrow. On the one hand this was an improvement over the 70% we thought we saw after the last round of chemo, but it still was not near the 30% threshold that we set that would keep me out of the hospital for another round of chemo. So, I am going back for another round of chemo before the transplant.

We need to reduce the amount of chemo in my bones – this will help the transplant process.
This round of chemo will be unlike the previous two induction rounds: this will be a double dose of Ara-C, for one hour, every twelve hours, over the course of 6 days. I hear this is a significantly strongly dosage of chemtherapy and it will hopefully work more effectively. The side effects can be severe: everything from fine motor coordination to short-term memory loss is expected and I will be tested every 4 hours for side-effects and administered appropriate treatment or we will cease chemotherapy treatments until some capabilities are restored. This may prolong the actual treatment cycle, but I’m hoping that my body will be strong enough to weather the storm. I did hear that I will most likely receive steroids for my eyes during this round of treatment as a preventative measure.

Funny part is to this whole scenario that last Friday we planned my return to hospital and the doctor even made a reservation for me to return this coming Thursday. Admissions called today and asked me to be at the hospital by 9am and they will give me a temporary bed and then later move me to my permanent room. I am not about that at all: when I go back to the hospital, I want to be put into my room, change my clothes, don the gown, put on my iPod and let them start the chemo right away – no waiting around bullshit for hospital administrators to get their collective acts together.

Then this evening, after I spoke with my oncologist, admissions called back to say they won’t have a bed for me at 9am and I should be in standby mode: they will call me when they’re ready for me. I can already tell this is going to be a horror to go through.

In the mean time, I have my iPod synching, my clothes a-packing, my pictures, computer, etc., ready to go so I could just leave when I’m told to come to hospital, but I am dead-set (uh … bad use of words) on getting right to treatment and I will be noticeably and vocally annoyed if that doesn’t happen.

Also, I’m trying to get back onto the same floor that I was on the last time. I already know and love the nurses there and really want to be under their care and treatment again. (Uh, hello, Kathy … where you been?)

So aside from some anxiety-driven sleeplessness (even with some serious sleeping drugs), I do feel a bit more leukemia fatigued than usual and the lack of sleep is starting to catch up to me. (Be forewarned, HUP, interruptions every 18 minutes will not be tolerated as nicely this time around.) Hence, I am eager to start treatment and get back to “normal” as soon as I can.

It was a bit of tear-jerker to leave the office on Tuesday. There were some people who didn’t know I was fighting Leukemia who were visibly shaken and concerned – and I very much appreciate their concern, and as this is probably the first posting they’re reading since they found out, I want to say thank you and don’t worry about not knowing what to say — there’s very little you can say that’s wrong, and a whole lot that’s right.

So, once again, strength and love, and be talking to you soon from the hospital!

Love,
Seth

Bone Marrow Biopsy no. 4

Friday I had my fourth bone marrow biopsy. We were testing to find out how much leukemia is still in my bones. Above a certain threshhold, and I’ll need to go back for another round of chemo before the transplant. This will improve my chances with the transplant. Of course, such a circumstance may also set back the date of the transplant. Now as I am often reminded by my friend/survivor, Gail, timing really sucks with cancer and you are nearly helpless to do anything about it. And this, in particular, could really suck – on several levels: 1) the next round of chemo is stronger than what I’ve received before, and 2) I just want the transplant so I work towards recovery and not put it off anymore.

So this weekend, while a lot fun seeing Voodoo, was particularly stressful. I chose to have the procedure on Friday because when presented with the option of Friday or Monday, I decided on Friday so I can just get started – no reason to put off the inevitable. But it was a whole two additional days of angst waiting for the results, which probably won’t come back until Tuesday or Wednesday.

Last time, the biopsy showed close to 70% leukemia in my bones. We have to get that number down. If there’s anything over 30%, it’s back for another round. And I’m tentatively scheduled to enter the hospital Thursday. And being the type-A personality that I am, I’m going to draw bloods Thursday morning at the oncologist’s clinic so we can do the blood cross-typing and matching so that after I get into my room we can start treatment right away — I just don’t want to wait. My impatience to move towards “cure” is becoming obsessive.

Anyway, my doctor told me I may not be on the same floor as I was the last time. To be honest, that really pisses me off. I really want to be in the same place … I never thought I’d feel that way … but the prospect of having to get accustomed to a whole new floor and staff just isn’t palatable. Send me back to Rhoads 7! We’ll see how that goes.

Update coming soon. Until then, strength and love …

There’s going to be a round 2 of chemo

So my first round of chemo didn’t get the results we were hoping for and I need to have a second round of chemo to try to bring my counts down even lower. Until we get the results of this second round of chemo, we won’t know if I’ll need a bone marrow transplant, and the doctors are only planning two weeks out right now. However, in anticipation of that transplant need, they have already started typing me. At this point, no one needs to do anything along those lines. We still have to get through the next round of chemo, which will last 7 days, and then another 7 days of rest at which time they’ll do the bone marrow biopsy to determine how effective the treatment was.

This is going to prolong my stay here in the hospital a little more than I had hoped. And when we first got the news of the results of the first round of chemo, I was crushed. But I’ve taken the past few days to get myself together and get ready. I’ve tried reaching out to other oncologists in NYC to seek some objectivity and a 2nd opinion (not that I don’t trust my own doctors here, but I don’t know what I don’t know so I don’t know all the questions I need and want to ask and I’m overwhelmed with anger and frustration). Overall, most doctors have to specialize in this kind of leukemia before they give an opinion, and from what we heard, I am in the best possible place for that and there really isn’t anyone else I could seek out outside of this place that would know more or better how to treat this. And that has greatly reassured me.

I have my up and down moments. In the morning, I’m up, awake, vivid and can accomplish quite a bit. From about 6 until 9, I’m great. At 9, I start to wind down a little and I coast through most of the day. By 2 or 3, I need to rest. Dinner time, I’m good, I eat, I’m able to do some stuff, but it really has to be mindless. But by 9pm, I’m done. And it’s usually at this point that I feel saddest or most depressed or most anxious or most worried. At 10, I take the sleeping pills and that lulls me to sleep and the cycle starts again. I think it’s important that I realize this cycle and share it because now you’ll know the best time(s) to try to catch me by phone or online.

Today my hemoglobin is low so I’m getting a transfusion. I’m already feeling the effects of the low blood this morning – it’s a dizzying kind of effect on the whole body. Makes my head swirl a bit. Unlike getting platelets, though, I won’t need Benedryl to knock me out for the transfusion. So I’m just waiting on the blood and will need to stop writing soon because I feel other effects coming on now also – spots in my eyes, irascibility (or is that just part of my normal personality? πŸ™‚ )

So that’s all for today’s update and the update on next steps. I’m enjoying reading everyone’s comments on the blog and getting emails and the pictures and cards and notes and postcards. Please keep ’em coming, it’s what really gives me my strength. And if you’re itching to send something more to help me pass the time – magazines are good – travel, gadgets, technology … I wish I could get through the Atlantic Monthly or Harpers but my concentration just isn’t there. Also, I posted an entry right before this one with a link to a list of DVDs that I would like to have.

Love and strength to you all, and many many thanks.

The anti-nausea drugs have arrived

Three yellow Zofran pills, and five small green pills – can’t remember their name. And the colase — which I’m appreciating more and more. πŸ™‚

Β The chemo drugs are here. They’ll be hung up on my rod in about an hour.

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?” πŸ™‚ 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 >