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 …


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.

So where did it go?

What? Where did what go? So on Wednesday and on Thursday they drew my bloods, as usual, to do the regular analysis and guess what? While my white blood count, ANC’s hemoglobin and platelets are all floating around the same numbers (I’ll update the blood chart here tonight), the lab reported no Leukemia blasts in my blood. I mean, WTF?!!!?!??!! They’re there on Monday; my oncologist thought she saw some when she looked at a blood sample on Wednesday, but now the lab says, “no.”

I probably shouldn’t complain. πŸ™‚

Actually, the oncologist said floating somewhere between 0 and 3% Leukemia in my blood is not going to rush me back to the hospital. This is a good thing – I’m happy to stay out as long as possible.

Only other news I have this evening is that is finally being redesigned and this blog now appears there too – but feel free to keep reading the blog here (preferred method).

Strength and love …

PS: Voodoo is visiting on Saturday — expect many pictures! πŸ™‚

Still “free”

At least in the outside world! πŸ™‚

Saw the oncologist yesterday. I’m doing OK but the Leukemia has started to reappear in my blood – the 3% of anomalous cells the machine caught on Monday were, in fact, Leukemia blasts. However, I’m still well enough to be out of the hospital and we’re going to push off that return for as long as possible. I have noticed, however, that I am a little more sluggish than before and my knees are really hurting from walking on concrete outside. And I was quite surprised last night as I putting together a book case how much energy it sucked out of me. My blood numbers are otherwise pretty good, but I guess I just need to monitor how much physical exercise I do and pay attention to my body.

What I find so interesting is that, technically, I’m healthier now than when I entered the hospital back in February, but I am significantly weaker. Or maybe I’m just more attentive to the changes in my body. Whatever it is, it’s just another one of those signs that I’m not well and it sometimes makes me feel awful. But I’m dealing. Plus, yesterday, the oncologist referred me to a therapist who specializes in cancer patients.

On the brighter side, we got a very good report about Voodoo’s off-leash boot camp training. It’s funny, I made much of the trainers’ same observations after a year of having her, except one: while I thought Voodoo may have been a little slow on the up-take on certain things, the trainers actually think she may be older than we have previously assumed. Regardless, she did very well: sit, stay and heel she’s good with. “Come”, continues to be an issue – though not entirely a bad one: issuing the command and walking away, she comes; staring at her while issuing the command – she does nothing. I’m so excited and can’t wait to see her on Saturday — videos will be in order because stills just won’t be able to capture this! (Hmmmm … new toy to purchase? πŸ™‚ )

Finally, saw friends/colleagues this past weekend from Organic. Those crazy kids! Loved seeing them all. Need to schedule more regular visits – I think it helps to break up the monotony of sickness-loathing. πŸ™‚

Thanks everyone – be back blogging again soon.

Strength and love…

UPDATE: For the curious, I weighed in at 167lbs (75.9kg) – a 3lb (1.36kg) increase over last week; an 18lb (8.18kg) increase over my hospital low of 149lbs (67.72kg). Mom is to thank for fattening me up with her excellent and frequent cooking. πŸ™‚ Blood pressure was 122 over 86 and my temperature was 97.8ΒΊ F (36.5ΒΊ C, 309ΒΊ K … for all you geeks out there).

Going to the oncologist

This is a visit I generally dread. Not that I don’t like my oncologist – I definitely do. But I always feel like I have to wade through a bunch of other sickly people and the smell just reminds me that I too am very very ill. Which I’m starting to resent more and more.

So Monday’s blood analysis has my numbers floating in the same areas before – a little on the low side, but I still feel strong, mostly, and have been doing a lot more work and have even been to the office. Although this weekend, I started feeling a little more sluggish than usual. I was enjoying lazy mornings in bed but I think it’s something else. Depression was one thing that came to mind. And then on Sunday, I realized it could be something else … something that Monday’s call with the oncologist started getting me worried.

“The machine says that 3% of your blood looks funny,” she told me. She was sending it off to the pathologist for further examination and that we would discuss the results at my regular appointment with her on Wednesday. Of course this whole day, the suspense has been killing me and I called the office to see if the pathologist’s report came back yet, but I did not reach the oncologist and she didn’t call me back this evening.

Naturally, my worst-case-scenario paranoia has kicked in and I’m pretty sure that what I’m going to hear on Wednesday is that after months of the Leukemia not showing up in my blood, that it’s finally re-asserted itself. Which, in turn, will most likely mean another return to the hospital for yet another round of chemotherapy – the dreaded double dose of Ara-C.

Whatever it is, it has to wait until after the weekend though, all other things being equal. First, I’m expecting a furniture delivery on Wednesday so I can start to feel like I have a home (though I don’t know why since I’m hardly going to be around to appreciate it), but, more importantly, Voodoo is coming down for a visit on Saturday and I really don’t want anything to interfere with that.

I’ve been reading a lot about the upcoming transplant procedure from a thick booklet the oncologist gave me at my last visit. I’ve also been doing my own research on the procedure and have been reading other Leukemia patients’ blogs who are going through transplant now. The process sounds absolutely gruesome and I have to admit that it terrifies me. I’m at the crossroads of not willing to stop living yet, but I just don’t know how much more of this I can endure.

I’m trying so hard to be strong for myself, for my family and for my friends, but lately, that’s been breaking down. And I think my general malaise and sloth are indicative of minor depression. Given the circumstances, I don’t think that’s unreasonable and on my call earlier today to the oncologist’s office, I asked if they could refer me to a therapist with a specialty in working with Leukemia patients.

So I’m trying to do the right things. I read recently that minor depression during the transplant process – before, during and after – actually reduced mortality rates from those patients exhibiting no depressive symptoms. At first I was shocked at that result, but then started thinking that if people are completely emotionally detached or can’t confront their emotions on something like this, there could be a deleterious effect on the body. So maybe confronting those emotions is the right thing to do.

But I am profoundly sad and scared. I cry that I just want to be better – not get better because the process of getting better scares me. I just want to be better. But I know that’s unrealistic, and I find little solace in the fact that the G-d awful process to come will get me there … eventually. It’s a very long road and it’s fraught with uncertainty, risks and dangers. I don’t want to scare anybody who reads this – I’m scared enough for us all (as is my mom, no doubt). But I just had to get this out here.

Maybe it’ll be cathartic. But in all my readings on this disease, I know I am experiencing the two things that I have always had problems with: accepting the loss of my dignity and autonomy and having to ask others for their help and support; and, two, being able to graciously accept it. I’m working on both, but it’s like I have so much to work on, I don’t know where it all comes from or how to keep it all together.

Your emails, cards, visits, calls all help – even if I can’t write back to everyone. I am very humbled by this experience and I wish I could be a better person as a result. I thank you for all your love, compassion, understanding and support. It means more to me than I could possibly ever try to explain. But please know, that even in the absence of me saying it to everyone all the time for all of the little things and all of the big things, and all of the things in between, that I do love you all and thank you from the bottom of my heart and soul.

Who shall live and who shall die?

Ever since this whole episode of my life started, my mind has zoomed in the Yom Kippur prayer that asks, in the new year, “Who shall live, and who shall die”, and then goes on to list all the various ways a person may die. The prayer concludes each section that prayer, attrition, and acts of loving kindness nullify the decree. I have always believed this quite literally. I grew up reciting it, singing it and truly believing that my fate was written to live or die and that how well I live and what I experience through the new year is guided by the depth of my conviction to repent my sins of the year before, to resolve to do better and to actually stick to that plan – that secret agreement with G-d. I have never thought of it as an onerous or outmoded way of thinking though many would say that it is. I believe and I simply don’t have to prove or demonstrate anything beyond that, because, as Douglas Adams (and I can’t believe I would actually bring one of the world’s best science fiction writers who had no bones with religion into this argument, but he wrote something so cogently that I can’t help but use it here) wrote, “proof denies faith and without faith [G-d] is nothing” (of course man gets run over in the next Zebra crossing, but that’s besides the point.).

My point here is that I have focussed on the death side of the Jewish equation. I was convinced I was on the list of who shall die. And while the love and will of my family wouldn’t let that happen (G-d forbid), I still had this moribund obsession with this. Then a few things happened that changed my mind.

First, after the bone marrow biopsy tests came back and were told the bad news that my marrow only went from 95% to 80% leukemic and that we were hoping for 5%, we started discussing treatment options and I requested an opportunity to seek a second opinion from outside of HUP (Hospital of University of Pennsylvania – this is where I’m being treated but it’s commonly referred to as HUP). The doctors agreed and we tried contacting three well known/qualified oncologists back in NYC. In general, I can sum up their comments like this: given my type of leukemia, I am in the best place possible to seek any opinion, and that generally, none of those other doctors were willing or qualified even though some are quite well known and respected in the medical community.

Second, I came to realize that though in my mind I knew I needed to move to Philadelphia for work, my heart was never really into it. But I had the good fortune (fate?) of meeting some wonderful people and getting acquainted to some neighborhoods and neighborhood institutions (i.e., food places of interest πŸ™‚ ) that started making me feel like Philadelphia’s still not my first choice, and I’ll probably run up to NYC quite a bit, but it could be livable.

Overall, the revelation is this: I have this life-threatening disease and I have to believe that there was more than a little divine intervention to get me to Philadelphia and to these doctors who are probably the best qualified in the world to treat me. I am on a floor with 28 other patients. At times, between doctors, fellows, residents, interns, nurses, CNAs and other staff, the patients are the minority on the floor. We get excellent care that we most likely wouldn’t get anywhere else.

So now I am convinced that I am on Who shall live side of the equation. Look – this diagnosis of where I’m at with my leukemia levels ain’t great. A second round of chemo is not uncommon but it is also what we were hoping to avoid. To be frank, if it doesn’t go into remission after this round there are still options open but they all carry very high risks and mortality rates. But after crying to my oncologist yesterday that “I didn’t come to Philadelphia to die” she assured me that whatever it takes, however long it takes, that I will get through this. It won’t be easy, but I will live through it and go on with my life.

I think I’m so anxious to get on with my life that I want to see that light at that end of the proverbial tunnel a little closer and I don’t want it to be a year out which is an outside likely chance. But if it takes a year to save my life, then I’ll take the time.

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.