Twins :)

Heart
Ultrasound of my heart from yesterday.

Day 50

As I’ve been learning through most of this illness, whatever complication can be simply described is usually not quite as simple as it would seem. Same thing for side-effects. Come to think of it, describing these outcomes in only the most simplest of ways is common-place and probably easiest to do because the manifestations of variations on what can happen are probably so numerous – they’re certainly unpredictable – that to get specific about anyone one thing before transplant could take an entire day’s lecture in and of itself, unlike the kindly 4 hour lecture we got before this whole process started.

Good morning! I finally decided to write something for the blog.

It has been an incredibly hectic time. But I am astounded that I now have someone else’s immune system in me. Of course my own immune system and nouveau-immune systems are not loving each other and I have had complications – nothing life-threatening, but serious. This is called Graft vs Host Disease and actually it’s not a bad thing to happen as it helps to establish my new immune system and help the body adjust. I’ve been fortunate that I haven’t had the most serious of complications, but complications just the same that have made the past several weeks somewhat unpleasant.

Not important to get into the details here, but in general, my GVHD has complicated my diet, my skin, body strength and I’ve had some fevers and bacterial growth. All of which are being handled and with the exception of bacterial issue, the issues are clearing up nicely (if slowly).

Mom has been doing a stellar job keeping up the blog and with calls and such. She went back to NYC to take care of things for a day or two and I think promptly collapsed and napped for most of the day — a well deserved respite. And although I know it’s taxing on her, I have to ask that we still go through her for a lot of communication – I’m simply not strong enough to email everyone or to talk on the phone just yet.

Many thanks to everyone especially for the comments – I read them regularly and just love them so please keep them up!

Strength and love to everyone,

Seth

Working out and waiting

It’s been a while since my last update – lots has been going on.

Basically, physical therapy is my next stop. There is a facility right here in the hospital and that’s where I’ll be going. In the mean time, I’ve been working with a therapist up here on my floor nearly every day. We walk, do exercises and practice general moves to make me more self-sufficient.

I’ve been walking more and more every day. I’ve been doing more exercises every day. And I’ve even been out of bed sitting in the comfy chair nearly every day. Yesterday, I was in the chair for several hours – a record! This may not seem like a lot, but getting out of bed is important, even if it is only sitting in the comfy chair. It improves my circulation.

Otherwise, we’re waiting for a bed to open up on the physical therapy (PT) ward. I need a single room due to my contact precautions and there seem to be precious few of those down there. So I wait. And the wait is killing me.

I’m becoming quite depressed being here on Rhoads 7. I like the floor, don’t get me wrong. And I have a nice room and a great view. And of course I know a lot of the staff and enjoy being here, but I still spend a lot of time in bed and it’s getting me quite depressed and I just want out! It’s so hard.

In any case, the waiting is agony, but the progress with PT has been great. Thanks to everyone for your continued well wishes – it really helps!

Strength and love,
Seth

Good Morning

It’s been several long weeks, but I am finally “back on the air” so to speak with the blog. Many many thanks to mom and the rest of the family for keeping everyone updated on what was happening. And many thanks to all of you who kept up, sent comments, etc..

In a strange way, all that love, all of the positive feelings came through. And while I do not remember much of what happened with all of the surgeries and all of the incidents that befell me, I do feel the love the strength of my family and friends that helped get me through it all.

It’s a very strange feeling not to have any recollection of what happened, but just the good happy loving vibes of my cadre. And I think I prefer it that way.

Recovery now is going slowly. I am very weak and need to get back into shape — after all, after being mostly laying in bed for the past 4 weeks, what do you expect? I lost a lot of weight and a lot of body strength, but it is starting to come back.

Recently, I started working with physical therapy here at the hospital, and the goal is that when my medical condition stabilizes – hopefully within the next week or so – that I will be transferred to the rehab unit where I go through 3 hours of training a day to get back my strength and dexterity. So it’s not just strength training it’s also about being able to wash and take care of myself, cooking, etc.. The program seems pretty complete. (I just can’t wait to cut my nails again which are getting in the way of typing! 🙂 )

Visitors: family has been here constantly. That’s been great. Of course, being in hospital as long as I have, I’ve lost a lot of sense of dignity and such 🙂 so I’m not quite up for visitors yet and I am also simply too weak to have others around at the moment. But we’re going to try slowly and see what happens. Today, Deb and Neil are in town so they’re stopping by and I think I’ll need to judge visitation based on where I am medically and physically so please don’t be offended if I say – not just yet, please.

I am trying to answer emails as best as I can. But since I checked last – June 13 – I’ve received thousands of new email so please bear with me as I get through everything. Phone calls are out, please. Talking on the phone, for some reason, makes me very weak. I can talk for short periods but not much. As I recover more strength, I’m sure I’ll be reaching out by phone more.

So for now, I’m going to sign off. Plenty to do this morning from a medical perspective and I want to get started to it’s not on my plate the whole day. Talk to everyone soon and again, thank you for everything during this difficult period.

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 …

Kisses for Daddy – Another joyous Voodoo visit

Kisses for Daddy – the best version

Originally uploaded by sdpalmer.

Lenna and Brian came to visit on Saturday with Voodoo. This time, there was no mistaking the daddy! Lots of kisses. I took Voodoo for a walk just the two of the us up the Skuykill River and we were both panting from the heat. A bottle of water and a quick walk back and we were both tired after about 45 minutes out in the heat and the sun, hence the resting pictures. Full set available at Flick.