Guess who came to visit

Here we are, resting after a great day together. The Flickr photoset says it all!

Physical therapy is done!

Yesterday was my last day with the physical therapist. I achieved a very high score on all of the tests for balance and endurance. It was a substantial improvement over last week and I think it’s due to my stubborn independence and just wanting to try to resume a somewhat normal life. Basically, the results of yesterday’s tests result in me not needing any assistance in walking, i.e., a cane or walker. However, when walking outstide on the uneven sidewalks and other outdoor pavements, I prefer to have the cane with me to help my balance, but there are stretches where I can walk unassisted. Very exciting … and now on to new challenges!

Strength and love,
Seth

Post-Brithday Birthday Celebration

Neil, Deb, David and Me

Originally uploaded by sdpalmer.

Because I spent my birthday in surgery an in recovery, we rescheduled a post-birthday birthday celebration yesterday. Champagne, and some of my favorite delicacies from Russ and Daughters: caviar cream cheese, whitefish salad, smoked salmon. Mom made tuna and egg salad, and we had cruditรฉ and a new find from Trader Joe’s: Italian Blood Orange soda. And while we were stocked with proseco, we downed he champagne Deb and Neil brought. Thank you, everyone! Full picture set at Flickr.

102%

I know it’s been a while since I wrote on the blog last – and there have been plenty of pleas, phone calls, and emails imploring me to write. It’s been a week and a couple of days since I came home and there have been lots of adjustment issues, home appointments with nurses and therapists – but more on that later. Here’s the latest update:

Today I had a pulmonary test in advance of the bone marrow transplant – it’s a standard set of tests to see if I’m still breathing ๐Ÿ™‚ … seriously, it’s a suite of tests designed to measure my lung capacity, my intake and output flow volumes, etc.. Easy tests mostly – only one of them required me to practically hyperventilate which made me dizzy, but otherwise, it was easy and painless. I learned an interesting fact today: my lung capacity is 5.08 liters which is 102% of anticipated capacity of a person my age, height and weight. This is interesting since I smoked for about 20 years and only just recently stopped when I was first admitted to the hospital six months ago, back in February.

And on the topic of excess … yesterday morning, the fire alarm went off at 7am. Mom and I piled out of the apartment in a quasi state of waking. A neighbor was leaving his apartment with his kids ahead of us. The kids looked so dazed. Well … walking with a cane now, I can tell you that living on the eighth floor of a building where each floor has 18-foot high ceilings, walking downstairs is quite the hike. Just after the fifth floor, the neighbor who was ahead of us, came running back up from the ground floor to let us know that it was a false alarm.

As a NY’er, I am always surprised by the kindness of strangers to other strangers when outside of NYC. I don’t know entirely how to express my thanks to him but I’ll put a note under his door to say thanks at least. I don’t even know his name ๐Ÿ˜ฆ

Well, with all of that excitement, I’d be remiss if I didn’t mention the nurse I’ve seen twice this week, the occupational therapist that came to visit, the physical therapist that came to torture me, the wound care nurse who helped to change my bandages and change my ostomy bag. Then tomorrow, I have the social worker, next week, another round with OT and PT, and a mugga scan for my heart (another set of tests in advance of the transplant).

On top of all that, I’ve been walking outside. It’s difficult walking on the concrete versus the soft floors I’ve become accustomed to indoors. But the other day, I got a whole 2.5 blocks! It’s quite a hike since my longest distance prior to that was just 500 feet. Two and half blocks – I’m thinking it’s closer to 1,000 feet or more, but my mom, who accompanied me on the journey, thinks it wasn’t quite that far. Well – isn’t it just natural that we would have different opinions? ๐Ÿ™‚

I promise to write more regularly. In the mean time, I’m going to sign off for now.

Strength and love to all!
Seth

Coming to you you live … from HOME!

After 62 days in hospital, I was discharged yesterday. YEAH!

When I got home, it felt weird – like … it’s not another antiseptic hospital room; it’s my home. And it was pretty much exactly as I remembered it. A new addition are the banister rails on the steps for my loft (installed at different angles which is pretty funny, and yet, sad at the same time).

Good, home-cooking (or at least preparation) last night: bagels with smoked salmon … YUMMMMMMM! Forspeisse was crackers with various dips. And dessert is still pending, but my brother and sister-in-law gave me an ice cream maker for my birthday and we prepped that last night so we can make ice cream today. ๐Ÿ™‚

I need a few days to regain some strength and adjust to being home, but I will be welcoming visitors soon, as well as spend some more time on the phone catching up with everyone.

Many thanks, again, for everyone’s support.

With strength and love,
Seth

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 …