Ultrasound of my heart from yesterday.
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,
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: http://survivingleukemia.wordpress.com/2007/09/09/light-the-night-walk-nyc-philla/
(it’s not the greatest user experience – my apologies in advance)
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 http://www.twitter.com/sdpalmer. 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 …
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!
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 …
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.
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.
|10 Feb||Day -3||4.9||147||10.8||25||–|
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.
It was a great weekend. I finally got away from Philadelphia for a little while and went down to the shore to visit friends. Angela, Paul, Marnie, their family and friends went out of their way to make me comfortable and it was so good to be out and about. The ride there and back – about 90 minutes from Philly – is a bit tiring on the body, but the pleasure of being around good friends was good medicine.
Of course, sun, drink and music lead to this embarrassing video.
Not to be out-done, Voodoo also had a good weekend with Lenna and Brian: (see the whole Flickr photoset)
My hair was growing in too unevenly so I had it cut today … all the way back. Looks great. Feels cold!
I had it done mid-morning today and was a little self-conscious afterwards at work, so I still wore my surgical scrub hat, but I’m getting more accustomed to it.
Mom and I went out tonight to Trader Joe’s for a food run and for the first time since I left the hospital, I didn’t put something on my head. I’ll get used to it slowly, I suppose.
Generally, I’m still feeling fine. My blood numbers, however, have drifted a little lower. There’s no cause for concern just yet. If the platelets continue to drift even lower and I require a transfusion of platelets, that will land me back in the hospital. But that was always a known. Leukemia blasts have been showing up in the blood – 5% on 17 May, 2% on 21 May, but 0% on 14 May (and we don’t have today’s numbers yet). So it’s still there, but not enough to get me back. This is actually surprising.
In fact, during my weekly check-up with the oncologist today, she said she was very surprised at how well I’m doing both physically and emotionally. This limbo time is very difficult and following the rules is difficult, especially when you’re “free” from the constant monitoring of the hospital staff, but I’ve come to think of it just as another part of my daily routine. That’s the physical.
For the emotional, I can only say that this limbo period – waiting from hospital discharge to the time of the transplant, is, for lack of a better word or phrase, maddening. I’m neither in remission, nor cured, and the prospect for being “cured” requires a long and difficult recuperation period. There are times that I have begun to question the quality of life issues, but choosing to push up the daisies is simply not something I think I could willingly choose. But I wonder where the strength will come from for the future.
I have had the good fortune to correspond with another AML patient who is going through the transplant process. Although we’ve only exchanged a few emails, and I have read his blog fairly regularly since he received his transplant, there is an ephemeral quality about the stride towards life that cancer survivors have, and it’s really extraordinary. It’s not a flight from death, and it’s a fight for life. But when you’re fighting your own body against a cancer, it’s very tough and my normally rather stable outer shell is starting to crack a bit. I need a vacation.
So I’m hoping this holiday weekend will be a good one. I’m hoping to spend time with friends, not too far away, but far away enough from Philadelphia to feel like it’s break. It’ll probably be the only one I’ll have between now and very late this year (at the earliest).
I don’t like ending a posting so bleakly. So happy thoughts: Voodoo went to see the vet this week and she got a clean bill of health (thanks, again, Lenna!). Despite concerns that she might be older than we were originally told, we learned that she most likely is 6 … just as we thought. So my girl is good and that keeps me going. And maybe that’s my focus – I have someone else to take care of beside myself. Maybe that’s the key – to realize the world, and your part it in, is larger than you think and demands more of you and keeps you pushing yourself forward.
And that’s a nice way to end this post and go to sleep.
Strength and love …
Wow – it’s been a while since I posted a health update. Everything’s still fine: my blood numbers are still in the same general area and I’ve had no problems or complications so I’m still out of the hospital. I’ve been getting stronger every day and have started working a lot more over the past week which has been invigorating – helping me to focus on life rather than on my illness. And while there is still the odd glance from people in the building about my surgical hats, it doesn’t seem to phase anyone. In fact, some colleagues have gotten really good at saying, “Hey – don’t come to my office, I have a cold … let’s meet on the phone.” I think that’s great. I also talked with the senior most person in our division – herself a cancer survivor and it was good just to talk to someone else at work who has gone through this – both cancer and work. It’s a very special bond to me (thanks, Amy!).
So – the title of this posting: sticky situation. Well — I’ve been doing so much around the house over the past couple of days my dressing over where the hickman line enters my chest has become loose and the site is a little sore. So I called the home health people and the nurse is coming this evening to fix my dressing. No big deal – I can still do just about whatever. I put another dressing over the current one, careful not to touch the site, as a temporary measure.
Next week, another meeting with the oncologist just to see how I’m doing. The blurriness in my eye from earlier this week is totally gone and I have a follow up with the ophthalmologist on Monday. Other than that, things are well. I’m looking forward to trying to get away for Memorial Day weekend and am trying to coordinate that with a friend. My first real vacation from this whole drama. It’ll feel good! So I’m hoping I’ll still stay this well at least until then.
Finally, a few new potential donor matches were found, while 2 potential donors were disqualified. However, the oncologist is still hoping for an early-July transplant.
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!
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).
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.
I am tentatively scheduled to go back to the hospital on July 8th to begin my transplant procedure. They have found several potential donors for me and right now, it’s looking good that I will undergo the procedure mid-July, with prep starting on the 8th. This is still tentative and needs to be confirmed, but this is the latest news.
I had my regular check-up with the oncologist earlier this week and it went well. There is still no pressing/medically-urgent need for me to go back to hospital right now so I’m still at home regaining strength, and have been to the office twice this week and anticipate working more in the office as my strength comes back. So until warranted, I’m still “free”.
I have been getting a lot of exercise and have been doing a lot of walking … and shopping (of course). The apartment is coming together really nicely and my brother has been bringing down lots of fond memories from my father’s place: photos, papers, our old trains! But there has been a part of me that really was hoping my dad would have heard this news from me, now, but I think he’s in a good place with a reliable messenger — maybe he even has some pull with the Big Guy.
That’s all for now. Gotta get to my ice-cream (hey! I lost 1lb since my last visit and I still look like a gaunt 164lbs, so I’m entitled! )
Strength and love,
I find it interesting – there is a marked cognitive loss … difficult to explain. Sometimes it’s vague, sometimes it’s just short-term memory, sometimes it’s longer-term memory, sometimes it’s just vocalization. It’s a weird impact that has lessoned as I’ve emerged from the Chemo twilight (as I like to call it). And there was a front-page article in today’s paper about it. New York Times: Chemotherapy Fog No Longer Ingored as an Illusion.
It is both frightening and alarming. When I first got off of the chemo, I noticed the effects more pronounced at that time. But later, I can’t remember having had certain conversations or having done certain things while on chemo. I’ve also noticed a marked impairment in eye-hand and motor coordination: in short, for me, this means I can’t play the piano nearly as well as I used to. This disheartens me most because it reminds me that I’m still sick — and the article above is a little vague about regaining memory, let alone skills.
But that’s a minor rant for tonight. I am still happily on the road to recovery and recuperation at home. My best friend’s stuffed Rhino was kind enough to write something to Teddy who, in a reciprocal fashion, is visitng Steve. Take a read — he’s a really good writer!
Strength and love to all!
PS: And by the way, there was another encouraging article this week that said that red wine can actually kill Leukemia cells. Anyone know how to inject that into bone marrow? Does a chianti work better than bordeaux?
I take it by your conspicuous absence that you have made it safely to Australia, and Steve is taking good care of you in Cairns. As your exchange student in America, I thought it only fair that I give you the latest on your dad from the past week.
His numbers have rebounded and he’s feeling very happy about that. You can hear the strength in his voice, and if you watch his determination in doing chores or working on pet projects, you can really see it come through. He is also really trying hard to get better integrated with work, but the company did what they could in his absence to get by and I think they’re so accustomed to how they’re doing things, they’re omitting from participating in key conversations and activities, and I know this is bringing him down. I think he really feels that he has something to contribute, and desperately wants to contribute to the business, but he’s getting shut out at every turn.
I suppose I could understand why. They don’t know long he’ll be out of hospital – so how much work can he really do and until when? The risk of starting something and not being to finish it would cause a lot of interference. But I think Seth knows how much he can take on and would do everything he could to finish it up, or commit to delivering it in a reasonable time frame, and if not, would have the good sense to work out some transition plan for himself. In the mean time, though, he struggles to find himself at work.
But I think you’ll like the new design of SethPalmer.com. It’s really coming together nicely and is linking together all of the various blogs, podcasts, feeds, pictures, activities, maps, mashups, videos and music you could ever want. A good designer friend is expected to arrive this week – no doubt the review will be merciless, but I think he’s just egging to be challenged. And of course, at the same time, his oldest friend arrives in Philly for a visit too. Should be an interesting contrast between the two, plus his mom — can I tell how much I love her?!?!?!? — should be a nice full visit.
Wednesday, Seth goes to see the doctor. Hopefully Monday’s numbers will be good so Wednesday could be pretty routine, assuming no infections or fevers or what not that would bring him (us) back to the hospital.
Two unusual things have happened in the past couple of weeks. There were two friends that committed to showing up for visits and who simply didn’t. One hasn’t called and it’s been 2 weeks; at least the other called, apologized and explained what was going on – and then went on to say he wanted to visit this weekend, didn’t commit, except to call, and then didn’t. MEN!
But the Voodoo visit last weekend was precious. I didn’t get to see too much since plushy Rhino’s and playful dogs don’t mix well, but I heard all sorts of great things and have seen the pictures to prove it.
Voodoo’s at camp right now! Can you believe it, camp? Steve goes camping and leaves me behind; when Seth’s call camp, I suppose you’re left out of the game too, right?! Well … Voodoo’s at doggie camp for 2 weeks so Lenna and Bryan (who just lost his 12-year dog this past week ) can go on a vacation.
While at camp, Voodoo is supposed to learn off-the-leash training. There is some speculation given her age that it simply won’t be possible, but she’ll have a fun time trying. After that, Lenna and Seth have a lifetime guarantee and can return to the trainer at any time for refreshes. Seth is definitely going to need it! I know he spoils Voodoo, although I do hear Voodoo was much more responsive on the leash than before. And it’s clear that she’s been trained well since she sat without hesitation or fear when Lenna brought out the training collar. I’m sure there’s something in that mind that’s just aching for the training and discipline … she’s already got the cute thing going on!
Otherwise, Seth seems to be in good health and getting stronger. They’ve found 11 possible donor matches and the search keeps going on. Remember to ask Steve to visit http://www.marrow.org to find a clinic nearby so he can get tested. Seth is trying to coordinate a bone marrow drive across his former companies so it would be great if we could his friends too.
Time for me to sign off. But if you write back and let me know what’s going on in Steve’s life, I’ll publish it here (if I can get my horn to press ). Also – snap a photo of the two of you together — it would be nice to put them side by side!
Love to everyone down under
(and above the equator)
PS: Steve – he listens to all of that pretentious lounge music you so chided but sent along. I think Seth is conspiring to send you a package of several of those CDs.