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’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,
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,
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.
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.
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.
So after a couple of days of my numbers trending low for white blood cells, ANC’s and platelets, they are starting to rebound nicely. I met with the oncologist yesterday and she said that if the ANC’s keep trending down I may go back to the hospital very soon just to get on stronger anti-biotics and avoid an infection. I’m hoping that as the numbers are now trending up that I can stay out of the hospital a little while longer – although I do yearn to continue my treatment so I can kick this. But I could do with more home cooking (I’ve gained almost 15 pounds since leaving the hospital and am at a respectable 165lbs – 75kg) and exercise. I’ve been doing a lot of walking outside. The concrete doesn’t give as much as my hard wood floors at home, so it’s been particularly brutal on my knees, but I’m doing much better now.
It was interesting visiting the oncologist yesterday. I was very forlorn there. I think partially because it was a clinic in the hospital and mostly because it not only surrounded me with people with cancer, it was just a significant reminder of how sick I really am. There was a woman receiving out-patient chemo. She was laying in a chair and it was just dripping in. I watched her for a moment and it made me feel like I am never going to get better – but the road is soooo long, I shouldn’t expect an immediate or short recovery. This, of course, goes against everything I am as a tried-and-true NY’er.
Enough for now – will write more later.
My ANC’s are declining, as are my platelets, but my other numbers are looking good and there are still no leukemia blasts in my blood. I’m still at home and feeling a little stronger every day. I’ve been doing more work for my job and accomplishing more things at home. But lately, I’ve been feeling a certain sort of anxiousness to get back to the hospital and continue with therapy.
Not that I prefer the hospital over being home – but I just so want to kick this thing and sitting at home isn’t accelerating my recovery, though it will probably make me better prepared for it.
The next steps won’t be easy. If I go directly to a transplant – which is a possibility (though not a certainty) – it is a long and complex process that will require almost a year to recover. But right now, going back to the hospital without any sign of complication, infection or illness other than what we know right now, won’t do me any good; what are they going to do that I’m not already doing or having done at home? take my pills? change my dressing? draw my bloods?
So I’m trying to be happy at home and that feels very strange. I am. And yet, I have so much to do to really make this place feel like a home. On balance, I have much I need to do to stay on track with work and balance other responsibilities (such as working on settling my father’s estate) and desires (like cleaning up my own things and figuring out next furnishing decisions to make this a home). Plus there’s the regular bill-paying, cleaning up, food shopping, dish-washing, laundry, etc.. Granted, it’s easier with my mom and other family members around, but that’s also a reminder that I’m not well enough to do it on my own yet and that it’s going to be a long time ’till I get to that point, and can’t I just get back to getting better now?
Surviving cancer is an extraordinary journey. It’s deceiving when you’re feeling like you’re in good health, but are reminded by the smallest things that, really, you’re not. And then there are the big things: a living will, a real will, who are the beneficiaries of my life insurance? my investments? etc.. As a single guy, these things start to take on different meaning and character when you’re suddenly faced with the real prospect of your own mortality. They mattered little to me before and I made rash decisions. And now, I have to think these matters through more carefully. Sometimes, I don’t have the mind for it; often, I lack the heart. I completely broke down the other day reviewing the living will with my mom and realizing the burden I was going to put on her should I ever need her to act on my behalf. And even though that’s not likely, I need to have that in place for the foreseeable future.
The past few days have been an emotional roller coaster. I think that’s normal. And I just read a wonderful piece by Jonathan Alter at Newsweek: My Life With Cancer. I highly recommend it. It seems like my past journey, and gives some glimpse into what the future will be like. (Thanks, Ed, for sharing this with me.) Alter also has another interesting piece that I would recommend: Don’t Judge the Edwards Family.
So my big debate for the foreseeable future is this: when I go back to the hospital, what do I put up on the walls. Last time, photos and drawings were a big help. But I intend to put the photos in albums and try to limit the stuff on the walls. While it was cheery and therapeutic, it started making me feel like I was starting to live in a cramped space. So what do you think? Should I walk in with picture albums, a few select pieces for the walls, a gallon of paint and paintbrush? (You know I will!) And that’s what’s making me cheery right now … and will be a good way to end this post, sign off for the evening and go to sleep with a big smile on my face thinking about redecorating the hospital room.
On Wednesday, I met with my oncologist who had some great news. There’s so much of it, I’m going to have to just bullet it out:
- I’ve gained about 5-7 pounds since I left the hospital 4 days earlier – eating my own food on my own terms on my own schedule is doing good for me.
- My numbers are still hovering and trending in the right areas and I was even able to stray a little from the neutropenic diet last night and had a fresh, beefsteak tomato (with mozzarella and olive oil). This doesn’t mean full off of the diet, but slowly and in moderation.
- The doctor doesn’t feel it’s necessary for me to see her for another 10 days! This is just a good indication that my numbers are good and that I’m taking care of myself.
- My cholesterol – usually not run as part of the suite of tests that’s done on my blood – turns out to be surprisingly, extremely low: 47!
Here’s the best part: there are no leukemia blasts in my blood! Even though my bone marrow showed 60% leukemia in the last biopsy, there have been no blasts in my blood since the last round of chemo. This was something the oncologist told me she thought the hospital would have told me – but they didn’t. It’s a bit unusual to have no leukemia blasts in the blood but have such a high percentage of leukemia show up in the marrow. However, it is not a dire situation.
When I go back to the doctor later this month, we will do another bone marrow biopsy. It could be that my blood keeps recovering and my bone marrow is still ill. And there are many ways to treat such circumstances. For one thing, I may not need a third round of induction chemotherapy, I may be able to go to consolidation chemotherapy, which is a process that reinforces the production of good blood cells. I don’t know yet how it works, but you can bet I’ll be looking into that. This, of course, is a hopeful scenario – an ideal one even – but not one that is out of the question.
And, yes, a bone marrow transplant will still be necessary, but it is not of the same dire urgency as before. My oncologist wants me to spend as much time as possible out of the hospital building up my strength, and I think returning to work and taking on some increased responsibilities will be good, plus more exercise. I’m hoping for a sunny path to consolidation and later to transplant, but I suddenly don’t feel the scourge of a death shroud surrounding me. I feel like we’re on the right path and I’m happy that my body is responding as well as it is.
I have to say, though, that during the check-out procedure, I’ve come to learn the costs of health care. And it frightens me to think that so many Americans in the middle of the income spectrum would be caught with such stratospheric bills for catastrophic care: just one of my anti-biotics costs $2,400 for a 30-day supply. My co-pay was $35 on that. But what would a person do without health care? Aetna, my health insurance company, sent me an evaluation of hospital charges that are covered and what I owe. Tens of thousands of dollars in charges and I owe $600-some-odd dollars. I can’t imagine what a less well-off family would do.
And in some ways this frightens me worse than my own diagnosis. Maybe this is a cause for me to pursue when I’m strong enough. I don’t know. But truly, when I was checking out from the doctor’s office yesterday, the enormity of the costs came over me and I got very choked up.
But – this is not a political blog … I’ll have other resources for that.
On to the rest of the update: Alan and Sheera have been here and they’ve been wonderful giving me hand setting up the home office with all the various new furniture and supplies, and helping with the shopping, the cooking, the cleaning, the laundry. They’re away now and the apartment seems very empty, but they have such a presence though in my heart – they’re not that far away.
My mom’s here now staying with me. Close friends are coming in this weekend for some serious geek play and catch-up, and hopefully some more apartment set-up (I just bought some furniture today that will need to get set up and another piece moved) so this is all coming together nicely.
I’m finding being home to be extremely cathartic, especially being around my family, and finally doing some cooking and good eating. The stairs to my loft are still a bit of a challenge, but I take them slowly and try not to go up and down too often during the day. I did a lot of walking today and must remember to get out more: while my apartment is big and there’s plenty of walking space, it’s hard-wood floors, and walking on the concrete outside is a very different set of skills. But it was good, although I know I pushed myself a little too far today.
Friday, I’m planning on attending a meeting for work, in person! I can’t wait. I’m looking forward to seeing a lot of people, and hope to start to ease back in to taking on more of my former responsibilities. I miss the challenge so I’m looking forward to seeing what I can reasonable take on for now.
So for current correspondence, please use my home address. Email me if you need it.
With continued thanks for your on-going love, strength and support, sending everyone my very best, too,