Transplant day -4: Chemotherapy again

They are pumping me full of saline solution – liters and liters of the stuff – to keep my bladder irrigated which is the standard procedure to avoid infection. The corollary effect, however, is a lot of … uh … discharge. The Chemo is starting to make me queasy but it’s being managed. My appetite is already gone and I’m feeling sleepy and a little down, but generally still feel like I’m on a good track.

Tomorrow we start radiation. That scares the shit out of me. But I have CDs with me that they can play whilst I’m being zapped so hopefully that’ll be ok. It may be difficult to write for a couple of days given the upcoming procedure, but I’ll try.

Strength and love,

PS: Please remember to support us for the Light the Night Walk:

To make a donation, please visit:

To join the team and walk with us in NYC on October 4th – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join:
(it’s not the greatest user experience – my apologies in advance)

Thank you.


Transplant, day -5: Chemotherapy

It was a fairly uneventful day after getting a foley line installed. I received my chemo today along with anti-nauseau drugs, some magnesium and a bunch of vitamin E. I had a diuretic to help get some of the fluid out of my bladder which is being flushed and that’s worked well. I’m tired earlier than usual so I’m going to sleep. Will try to write to up the blog as I can through the process.

Strength and Love,

PS: Please remember to support us for the Light the Night Walk:

To make a donation, please visit:

To join the team and walk with us in NYC on October 4th – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join:
(it’s not the greatest user experience – my apologies in advance)

Thank you.

Treatment update

We are now in day 5 of treatment. 6 bags of high doses of Ara-C. At first, it wasn’t so bad, it seemed pretty normal. Then Saturday afternoon it just hit me hard: fatigue. Been sleeping a lot. Also been depressed about the lack of internet and phone connectivity in my room, but thankfully the Internet part is solved. Still, though, a lot of fatigue from the chemotherapy. However, I’m hoping it’s working. A lot of the nurses here are of the opinion that if anything is going to bring down the levels of Leukemia in my bones, it’s this course of treatment.

Made some new nursing friends on the floor, altough I think I was secretly harboring not to inorder to return to the comfort of those I know and came to love on Rhoads 7, but there are a few here on 6 that I’ve absolutely come to really adore already. I also met my first patient here! A guy and his fiance – in their mid-20’s. He has lymphoma which has been successfully treated and he’s supposed to be discharged today. I’m wishing him well while I’m also jealous as all get-up.

So … after investing a few hundred dollars in a Sling box so I can be cheap in the hospital and not pay $8 / day to watch their lousy TV, I watched the conclusion of the Sopranos last night and was sadly disappointed. Maybe my investment wasn’t worth it after all 😦 But there’s always the Food Network all day now 🙂

Will write more when I can – it’s basically a very uneventful stay. A little nauseau but no vomiting, a lot of fatigue but nothing dramatic. I’m walking around the hall trying to keep my exercise up, but not really my stamina. Mom’s here doing needlepoint and I’m often dreaming of moving to Paris when this is all over.

Strength and love …

The Only Thing Worse Than School Administration is Hospital Administration – or – The Drama of the Return … an epic tale in 11 1/2 parts

( For those who know, this is where we insert the < drama > slide into the presentation … )

Part The First: Remember last week when I needed to do a bone marrow biopsy in order to determine how much leukemia was left in my bones? We needed to do this in order to determine if I needed another round of chemotherapy before the bone marrow transplant. After the last BMB in the hospital 14 days after my 2nd round of induction chemo, we were at 70%. Doing a transplant with that much chemo still in the bones isn’t a good thing so we decided to test the waters (as it were) to see where we’re at today.

Process was the same at the outpatient clinic as it was in hospital. Atavan, numbing, stick, pull, scrape, done. Bandage and sit on your butt. No biggie. Of course when my oncologist told me that we needed to this procedure, she called on a Thursday and told me I could do it on Friday (the next day) or Monday. Always wanting to attack this thing and not wait, I opted for Friday. Of course doing it on Friday gave me absolutely no time advantage whatsoever and adding a few days of waiting in angst was not thought out very well.

Part the Second: Regardless of when the bone marrow sample was taken, when I went to see the oncologist on Wednesday, we learned that despite the fact that pathology had the sample for several days nothing was done with it! Nothing! So the evaluation had to be rushed. However, I was still scheduled for hospital admission on Thursday. We discussed threshholds again – if the BMB results showed around 30%, I wouldn’t need to go back in. Of course we were going to have to quibble if the results were 35% 🙂

Partial path off of the Second part: Had a great time spending time with my cousin, James, this afternoon. Despite our constantly ringing, vibrating, beeping, hounding phones, it was just the two of us, food, and only one call from James’ brother (and another cousin), Kevin! What a treat!!!!

Part the Third: Around 4:30 in the afternoon the same day I saw the oncologist, I got a call from the hospital’s admissions office. They told me that I should be at the hospital at 9am. They asked if I could be there at that time and I told them I wans’t sure since we were waiting on final test results to confirm. Admissions didn’t seem to care – they just run a script that says this person is scheduled for admissions, they need to arrive at a certain time and any deviation from the script just isn’t allowed.

Part the Third through the Fifth: Hours go by after the call from admissions and I still haven’t heard from the oncologist with the pathology report. Five thirty, six, six-thirty I page the doctor. Nothing. Finally, around 7:30, the oncologist called: 50%. OK – 50% is much better than the 70% we thought was still in my bones after the last biopsy, but it’s still high enough above the threshhold to send me back to the hospital for another round of induction chemo.

This round is using a different cocktail mixture: this time it’s double Ara-C. On the down side, there are physical, motor control and some cognitive side effects that are more pronounced than with the last round. So on top of the Zofran and another medication that I’m taking to prevent nausea, I’m also taking steroids for my eyes. Drops. I hate eye drops. But more on that later.

Part the Sixth: Hospital admissions called around 9pm on Wednesday to say that my previously reserved bed for 9am the next day was no longer available and that I would have to wait at home until they called me with a bed / availability. Can I blame them? I’m just not a procrastinator when it comes to treating my illness and the sense, once again, over the loss of control over time, timing and what-have-you is just so profound.

Part the Seventh: Thursday. Waiting. Having gone through an extended stay at the hospital once before, I pretty much knew what to expect and the items I wanted from home. So I spent a good part of Thursday packing – not much – but there are all of the pictures, keepsakes and stuffed animals (yes, Russell is with me) that you want to take. Did a few chores to close out some open stuff for my dad’s estate, paid some bills, and just idled.

Part the Eighth: Not bearing the idletime very well, I go out for a walk. It was a gorgeous day in Philadelphia. There’s a beautiful new apartment building right on the Skuykill River not too far from where I live right now. Living in a loft setting when you need regular care isn’t easy and I’ve been thinking about moving and finding a more traditional kind of set up. I saw some really beautiful places and maybe the timing will work out just right. Just as we’re finishing viewing the second to last unit for the day, I got the call from the hospital, “Your room is ready when will you be able to come in?” I told them in about an hour.

Part the Ninth: Sure enough, an hour later, we’re at the hospital admissions room, where there are about a dozen people, about 4 checking in, the rest relatives/friends, one person at the reception desk and one person doing admissions. Can we say molasses? ‘Nuff said? NO — of course not …

Part the Tenth: turns out my room isn’t ready after all! In fact, the room we thought I was getting on Rhoads 7 was not the right kind of room for me, so they were scrambling to find me another room in the hospital. They had one on 6 which isn’t bad, but I knew the nurses on 7 (and I will talk about this in a future post), but there was just something that seemed off about putting me in a room on 6.

Parth the Eleventh: The room on six is ready. It’s just before 9pm They weren’t going to get started on my treatment because the chemo pharmacist leaves at 9. I was IRATE! I told them to find the doctor on duty and that I wanted to be discharged. If was going to have to wait 12 hours to be treated, I wanted to be medivac’d to NYC and get treated at Memorial Sloane Kettering. My mom, of course, was irate, but I was dead serious. It made absolutely no fucking sense at all to make me wait to come to the hospital all day just to sleep there for a night when I could have done the same thing at lesser risk of infection by being at home.

It took a lot of hemming and hawing, but the chemo chemist stayed late, mixed my cocktail and around 1am this morning, I started treatement. Technically, it’s day 2. And here we go.

Hopefully the < drama > slide ends here. But because I have an interior room in the building, I have no cell service, except a scant one bar from time to time, if I’m sitting in the right way, with my body curled around the phone, arm extended toward the window, the window shades open, the sun above a certain azimuthal height, etc. …

To make things even worse (could they be, Seth … could they be?) the wireless internet access is down on this floor. I’ve been typing this entry most of the day on Friday and came to the family room which is on the other side of the floor, hoping that the wireless acess would be up and running here – but it’s not. So I stole the ethernet cable from the computer in the family room and am using that now.

It’s so frustrating feeling this sense of total loss of control over time and communication. Time I can’t help, but communication … there’s just no excuse any more.

Truly, that’s all for now. If you want to get a play by play of my, when I can I can send short text messages to Twitter where you can follow me along at I will try to integrate a twitter widget here. These are just brief messages about what I’m thinking or doing. It’s a very vicarious way to broadcast and follow one’s life.

Strength and love …

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.

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.