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.

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 SethPalmer.com 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!

Still “free”

At least in the outside world!

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? )

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.

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. Blood pressure was 122 over 86 and my temperature was 97.8º F (36.5º C, 309º 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 ) 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? )

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.

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 >

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.

How I found out

Ever since I moved to Philadelphia in December of 2006, I’ve felt like I’ve been struggling with the flu. Everyone’s been sick at work and I was certain that I caught something from them.

I went to the Hospital of the University of Pennsylvania a few weeks ago when I got sick because at one point I had a sore throat that was so bad I couldn’t swallow. A little percaset, Flonase and sudafed, and I was better. But I didn’t have blood work done and we decided not to treat whatever it was that I had at the time with antibiotics – it not being the first choice of treatment for situations like this. The “flu” seemed to subside in about a week. Then less than two weeks later, it seemed to flare up again. After fighting this last round for more than 2 weeks and not seeing any appreciable improvement, and with some swelling in my left cheek which wasn’t present before, I decided to go back to the hospital on Friday.

When I got to the Hospital on Friday, I was in the emergency room CDU (Critical Decision Unit) for several hours. I recounted the above to them in more detail and they ordered a blood work-up. A few hours later, a nurse practitioner came to tell me that there were some very unusual results, in particular, my blood platlet count was very low. We discussed a few reasons why this may be but nothing seemed to satisfy her.

Around 6pm, I was getting very antsy. I had been in the CDU for almost seven hours and I needed to get home to take of my dog. Now some would say that that was not the smartest of moves. Perhaps not. But I’m a recent transplant to Philadelphia and really know no one here that I could call at the last moment and ask them to take care of the dog for me. So against the hospital’s wishes, I signed the papers and discharged myself from the hospital. They gave me some anti-biotics and some Tylenol with codeine, along with prescriptions for both. They said the hematologist and oncologist still needed to run blood tests and they strongly advised me to return to the hospital, whether I was feeling healthy or not, but eventually relented and said that if I didn’t feel well at any point, I should come back.

I thanked them, returned home, tended to the dog, took my meds and went to sleep. I woke up feeling better than I did in weeks. I suddenly wasn’t feeling sick anymore. My mom was coming to town to visit, and when she came in we were planning to fill the prescriptions and do some other things around the apartment and get me more settled in.

My cell phone rang around 10am. I didn’t recognize the number so I didn’t answer it. I listened to the voice mail a few minutes later: “Hi, Seth … this doctor XXXX the attending physicial at the ER at the University of Pennsylvania. The hematologist has determined that you have acute leukemia and you need to return to the hospital immediately.”