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 …