Friends helping friends

Michael’s running bib, originally uploaded by sdpalmer.

My good friend, Michael, recently ran the Race for the Cure in memory of his mother, and in celebration of me – both noted on his running bib. Click the picture to see a larger version. (Also, check out Michael’s team mates!)

Also, please remember to support us for the Light the Night Walk:

To make a donation, please visit:
http://www.active.com/donate/ltnNewYo/2154_krpalmer

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)

Thank you, Michael — and everybody!

Strength and love,
Seth

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 …

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.

Lastest health update

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 …

Email from Teddy in Australia

Seems like Teddy is having a good time with Steve in Australia. I received this ranting over night and I’m very excited for him and happy. I understand pictures are eminent.

Golly, that was one hell of a trip…If l had been asked, previous to taking this journey, how l would have liked traveling in a post pack, l may have ignorantly suggested another way of traversing the journey to a former convict colony. However, having now arrived, l find myself in remarkably good condition and enjoying the fine weather and the intoxicating smell of flowering ginger plants. Steve, this creature whose neurosis you seem to have sent me to witness, has made me as comfortable as possible in what appears to be a former plush creature of the forest’s place of honour.
The house sitting thing he has been doing for years, l gather, as he mumbles incessantly in his sleep… ” uh .. what happens when the world drowns in it’s own filth.. oh… or worse…. the recipe for a killer marguerita is lost… ” is about to come to a great heaving end. A fraught prelude of bizarre and wanton exchanges between various lawyers and mortage brokers has finally culminated in him taking a great big breath ( he tells me that it’s ‘breath’, and as a stuffed creature of much tactile and little biological experience , l suppose l have to defer to the ‘anxious one’ on this score… the ‘breath’ he refers to is red and taken from a glass…and as frequently as l have come to know breath to be taken in my usual home) and throwing his hands in the air in an exaperated action. Sometimes l see him do a very similiar form of polyrhythmic arm throwing and hip thrashing as he barks unintelligibly into the head of a broom. Frenetically waved around the floor in a random pattern reminiscent of a micro version of crop circle production. There is always music playing as he does this. The two activities are always performed simutaneously but with no apparent correllation… Oh well… Anyway… it appears as if the white noise of people involved in the buying and selling of property is soon to finish and he is as glad about that as a pet is to hear he is being ‘tutored’ rather than the alternative beginning with ‘n’. This will be finalised on the 22.5.07… I hear him tell people on the phone there will be many attempts to vicariously lower his dear friend Seth’s leukeamia blasts by ‘breathing’ when this occurrs. He also would like you to know about a herb that he takes as a way of relieving joint pain. It is called ‘ Gotu Kola’. Steve wanders around under trees and eats two leaves of this every day as if he was a very fickle two legged bovine. He does this since a rather major dancing accident and his knee took the path of a parent telling off kids in the back seat of a car. Twisting awkwardly and.. (ohh how the sound grates…) backwards…. His knee is fine now but it has taken a while. It can be bought as a plant in a pot at nursery, often under the title of ‘ Arthritis Plant’ or under the name specified above. It is not actually specifically for arthritis but is prescribed as such in South America. Steve found out about it because he house sat for a lady who lectured in biochemistry and took it herself. She had fantastic joint mobility as did her 16 y o cat whom she fed it to too. ( 1/4 chopped up leaf on cat a day) She was 87, Steve thought she was in her early 60’s. He of the anxious disposition thinks it was integral to his knee’s complete recovery. It has something in it that helps restore the connective tissues around where your muscles attatch to your joints. He thinks it is great stuff. He is now chasing around his digital camera and l think just heard him swear. Good heavens! Where have you sent me? He has discovered that his battery is flat… Oh well… He is threatening to take photos of me and has now put on insane music whilst feeling a renewed need to self administer an intense form of breathing.. What’s that you say Steve.. ‘CPR.. Crucially Proactive Red’? Oh gawd… I have whisked up into his arm, broom in the other, audio is blaring and we are off. He assures me l will survive, not only that, apparently l will come back knowing all the words of ‘Video Killed the Radio Star’

oxox

Ted ( I heard you on the wireless back in fifty two..)

[ed: it seems Teddy's going through a stream of consciousness/thought phase ... Steve is definitely rubbing off on him! ]

Going to the oncologist

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.

Chemo brain

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?

In the past 52 days …

me-outside

Originally uploaded by sdpalmer.

I haven’t been outside or walked up and down steps. That changed today. First, the physical therapist (read terrorist) came by and we walked up and down a whole flight of stairs. Very weird. My leg muscles haven’t had to move like that in a long time. I was able to make it up and down one whole flight of stairs without too much discomfort. It felt really weird though. The PT gave me exercises to do which I think will help me prepare for the next time I do the stairs – either Wednesday or Thursday this week.

Then, it was a real treat: it’s 70-some odd degrees (Fahrenheit, for all you non-US readers; ~ 20 C) today in Philadelphia and I decided it was time for me to go outside. So I’m wearing my hospital gown, put on my robe, got into another hospital gown – a yellow plastic thing to keep bad stuff away, donned a hat, a mask and gloves and off we went to the courtyard on the first floor.

First – and I know this won’t be exciting to most people – but I got to ride in a public elevator – not one of the patient elevators. The public elevators are beautiful compared to the internal patient ones. Then we went to the courtyard. And I’m sorry, but as an ex-smoker, I need to be a non-smoking evangelist now: people were smoking in the courtyard and it smelled like one big ashtray. Mom snapped a couple of pictures and then I told her I had to go inside because the smoke was making me sick.

But I was outside. How nice to smell the (somewhat) fresh air. I can’t wait to get home.

On to round 3 …

The last round of chemo knocked the leukemia down from 80% to 60% – a good improvement, but not what we were hoping for. Also, my brother, Alan, is not a compatible bone marrow donor.

The way forward is clear now:

• I will spend the next week to 10 days in hospital as some of my blood and physical strength recovers; specifically, we’re looking for my ANCs to get up to 500 (we were slightly encouraged today that my platelet count went up on its own as did my hemoglobin, but due to a processing error earlier this morning with my first bloods results in 6.6 for hemoglobin, I’m actually getting a transfusion today).
• When my numbers have sufficiently recovered, I will be able to return home! The length of the stay is still unknown right now and will depend on my numbers and the type and frequency of care I’ll need when I’m not in hospital.
• I return to the hospital for a month’s stay for a third round of chemo. This will involve the double dose of Ara-c.
• Then we have a break for a while – not sure how long, at least 4 weeks. I don’t know if I’ll be able to be at home for part of that.
• Then the bone marrow transplant. There are subsequent steps after that, but we can hold off on those details right now.

If you are interested in becoming a bone marrow donor — and who knows if we’ll be a match??? — please visit http://www.marrow.org. That is the national marrow donor program and has a wealth of information on what the program is and how typing and matching work. If you register online, they will send you a kit. You can also do it in person at a local donor center. Also, speak to your doctor about how to do this if you are otherwise unsure. To be blunt, I cannot survive without finding a donor so we need to get as many people registered as possible; my family are least likely matches, so I have to reach out more to friends, colleagues, clients, etc., and hope that somewhere out there there is a match for me.

The likelihood of me finding a match in the registry is 70-80% (the percentage is based on ethnicity).

I am finding all of this a lot to take in right now. While the road forward is now better known, we also now know better a number of the risks: outside of the hospital, it will be more difficult to control exposure to potential virii and other bacteria – I will have to be very careful. I still basically won’t have a life and the road to recovery is going to be much longer than we originally thought.

You know, when they told me the results of the 2nd bone marrow biopsy and it wasn’t good I was noticeably emotional with the doctor that night. Last night, my mom showed her emotions and she was crushed. But I have to tell you, that even though I still am of the belief that I didn’t come to Philadelphia to die, that I’m somewhat emotionally barren right now and not entirely moved by this news as I was the last time.

It’s very bizarre. I’m angry that I have leukemia. I’m angry that I’m just one big science experiment. I’m angry that I have to put my life on hold for a long time and don’t even know when I’ll get it back. I’m angry that I had to lose my father now of all times! But I think I’ve spent every other emotion of being sad and scared that all I have left is this lingering anger and animosity. That’s not good and I know I need to work on that.

Maybe I exaggerate a bit – I’m still sad. I’m rereading this entry and making edits and can’t help but be teary-eyed. The reality of the situation is just so extreme – you don’t expect or plan for something like this. You know – in the beginning, the attending physician used to say that I need to think of this as an episode of the The Outer Limits … where they control the horizontal, and they control the vertical. But I’m wondering who is the sadistic son of a bitch who’s writing the fucking script.

Russell has arrived

Russell has arrived

Originally uploaded by sdpalmer.

For a week now, my good friend in Australia, Steve, has been asking me if “Russell” arrived. I had no idea what he was talking about and he was keeping it awfully cryptic. Well – Russell arrived today – a plush Rhino that’s been on Steve’s bed for many years. It’s big and cuddly (Steve too) and I’m enjoying having Russell here.

I’d like to make this an exchange program so it’s time for my teddy which has been on my bed for nearly 20 years to take a trip to stay with Steve. I am just overwhelmed and happy with such a thoughtful thing to have sent. It’s brought me a lot of happiness today and I am forever indebted to Steve as one of my best friends, closest confidants, and loves. I’m pretty sure having Russell here is going to start to change things a lot.

Thank you, Steve!

My father has died – the other side of who shall live …

[NOTE: Please do not send condolence cards to the hospital - please only send get better cards to the hospital. All other correspondence can be sent to my home. If you need addresses, please let me know by email.]

My father was fortunate enough to have made it down to Philadelphia to see me last Friday before being admitted to the hospital on Saturday. My father was fortunate enough to have seen my brother yesterday just after Alan flew in from Israel. And I was fortunate enough to talk to my dad yesterday once he was out of critical care.

This morning, my father passed away. At least he held on for us all to see and speak with him. I am a little numb right now. A little unsure how I should feel. I am aware of the irony that my best friend’s father’s yarzheit was yesterday on the Jewish calendar and that my father’s will be so close. I am keenly aware of the other side of the who shall live and who shall die liturgy for Yom Kippur.

And I am ever grateful for the phone calls and emails and I’m sure all of the other media that will start flowing this way. I am a little overwhelmed. I cannot attend the funeral – the risks to my health are too great. But I will be present there somehow and will discuss with my brother and uncle how best to do that.

I can’t think of anything else to write right now except that I think you all for your love and support and understanding while I don’t respond or write as quickly or as often as I have or typically do.

Love and strength,
Seth

Who shall live and who shall die?

Ever since this whole episode of my life started, my mind has zoomed in the Yom Kippur prayer that asks, in the new year, “Who shall live, and who shall die”, and then goes on to list all the various ways a person may die. The prayer concludes each section that prayer, attrition, and acts of loving kindness nullify the decree. I have always believed this quite literally. I grew up reciting it, singing it and truly believing that my fate was written to live or die and that how well I live and what I experience through the new year is guided by the depth of my conviction to repent my sins of the year before, to resolve to do better and to actually stick to that plan – that secret agreement with G-d. I have never thought of it as an onerous or outmoded way of thinking though many would say that it is. I believe and I simply don’t have to prove or demonstrate anything beyond that, because, as Douglas Adams (and I can’t believe I would actually bring one of the world’s best science fiction writers who had no bones with religion into this argument, but he wrote something so cogently that I can’t help but use it here) wrote, “proof denies faith and without faith [G-d] is nothing” (of course man gets run over in the next Zebra crossing, but that’s besides the point.).

My point here is that I have focussed on the death side of the Jewish equation. I was convinced I was on the list of who shall die. And while the love and will of my family wouldn’t let that happen (G-d forbid), I still had this moribund obsession with this. Then a few things happened that changed my mind.

First, after the bone marrow biopsy tests came back and were told the bad news that my marrow only went from 95% to 80% leukemic and that we were hoping for 5%, we started discussing treatment options and I requested an opportunity to seek a second opinion from outside of HUP (Hospital of University of Pennsylvania – this is where I’m being treated but it’s commonly referred to as HUP). The doctors agreed and we tried contacting three well known/qualified oncologists back in NYC. In general, I can sum up their comments like this: given my type of leukemia, I am in the best place possible to seek any opinion, and that generally, none of those other doctors were willing or qualified even though some are quite well known and respected in the medical community.

Second, I came to realize that though in my mind I knew I needed to move to Philadelphia for work, my heart was never really into it. But I had the good fortune (fate?) of meeting some wonderful people and getting acquainted to some neighborhoods and neighborhood institutions (i.e., food places of interest ) that started making me feel like Philadelphia’s still not my first choice, and I’ll probably run up to NYC quite a bit, but it could be livable.

Overall, the revelation is this: I have this life-threatening disease and I have to believe that there was more than a little divine intervention to get me to Philadelphia and to these doctors who are probably the best qualified in the world to treat me. I am on a floor with 28 other patients. At times, between doctors, fellows, residents, interns, nurses, CNAs and other staff, the patients are the minority on the floor. We get excellent care that we most likely wouldn’t get anywhere else.

So now I am convinced that I am on Who shall live side of the equation. Look – this diagnosis of where I’m at with my leukemia levels ain’t great. A second round of chemo is not uncommon but it is also what we were hoping to avoid. To be frank, if it doesn’t go into remission after this round there are still options open but they all carry very high risks and mortality rates. But after crying to my oncologist yesterday that “I didn’t come to Philadelphia to die” she assured me that whatever it takes, however long it takes, that I will get through this. It won’t be easy, but I will live through it and go on with my life.

I think I’m so anxious to get on with my life that I want to see that light at that end of the proverbial tunnel a little closer and I don’t want it to be a year out which is an outside likely chance. But if it takes a year to save my life, then I’ll take the time.

There’s going to be a round 2 of chemo

So my first round of chemo didn’t get the results we were hoping for and I need to have a second round of chemo to try to bring my counts down even lower. Until we get the results of this second round of chemo, we won’t know if I’ll need a bone marrow transplant, and the doctors are only planning two weeks out right now. However, in anticipation of that transplant need, they have already started typing me. At this point, no one needs to do anything along those lines. We still have to get through the next round of chemo, which will last 7 days, and then another 7 days of rest at which time they’ll do the bone marrow biopsy to determine how effective the treatment was.

This is going to prolong my stay here in the hospital a little more than I had hoped. And when we first got the news of the results of the first round of chemo, I was crushed. But I’ve taken the past few days to get myself together and get ready. I’ve tried reaching out to other oncologists in NYC to seek some objectivity and a 2nd opinion (not that I don’t trust my own doctors here, but I don’t know what I don’t know so I don’t know all the questions I need and want to ask and I’m overwhelmed with anger and frustration). Overall, most doctors have to specialize in this kind of leukemia before they give an opinion, and from what we heard, I am in the best possible place for that and there really isn’t anyone else I could seek out outside of this place that would know more or better how to treat this. And that has greatly reassured me.

I have my up and down moments. In the morning, I’m up, awake, vivid and can accomplish quite a bit. From about 6 until 9, I’m great. At 9, I start to wind down a little and I coast through most of the day. By 2 or 3, I need to rest. Dinner time, I’m good, I eat, I’m able to do some stuff, but it really has to be mindless. But by 9pm, I’m done. And it’s usually at this point that I feel saddest or most depressed or most anxious or most worried. At 10, I take the sleeping pills and that lulls me to sleep and the cycle starts again. I think it’s important that I realize this cycle and share it because now you’ll know the best time(s) to try to catch me by phone or online.

Today my hemoglobin is low so I’m getting a transfusion. I’m already feeling the effects of the low blood this morning – it’s a dizzying kind of effect on the whole body. Makes my head swirl a bit. Unlike getting platelets, though, I won’t need Benedryl to knock me out for the transfusion. So I’m just waiting on the blood and will need to stop writing soon because I feel other effects coming on now also – spots in my eyes, irascibility (or is that just part of my normal personality? )

So that’s all for today’s update and the update on next steps. I’m enjoying reading everyone’s comments on the blog and getting emails and the pictures and cards and notes and postcards. Please keep ‘em coming, it’s what really gives me my strength. And if you’re itching to send something more to help me pass the time – magazines are good – travel, gadgets, technology … I wish I could get through the Atlantic Monthly or Harpers but my concentration just isn’t there. Also, I posted an entry right before this one with a link to a list of DVDs that I would like to have.

Love and strength to you all, and many many thanks.

Day 9 10 (ooops)

(Actually, I’ve been in hospital 13 days now; it’s day 9 10 since they started the chemo)

So I am officially off the chemo now for a few days. We wait and watch my blood counts to make sure the chemo does its job. Statistically, the prognosis is looking good. I know that’s a weird of saying it, but my course of treatment is following 99.999% of other treatments which is a good indication. It’s also likely that I will not need a bone marrow transplant.

Yesterday, two interesting medical points of note – I spiked a fever which was easily controllable, and expected, and I had some platlets transfusuion (two bottles). I broke out in hives during the platlets but a little Benedryl and a good mid-morning nap and I was fine.

Late last night friends came to visit. It was great to see everyone and I’m really touched by our friendships. It also makes me feel almost totally worthless in this bed and in this condition. My focus generally isn’t what it could be and my desire to do work is outweighing my ability to do so. I know I have to accept this for another few weeks, but I don’t do “nothing” on vacations – even sitting by a pool, I’m reading, talking, playing a game or something. I am totally doing nothing in this condition because I just can’t focus. I just got a ton of DVDs and need to get a small portable player so I don’t have to take out the laptop everytime I want to watch. I think that’ll be today.

Best part so far is that I’m no longer hooked up to the IV pole 24×7, only at times when I need my medicine. This is a great thing and I’m hoping it will give me a little more freedom, though with interruptions every 18 minutes, all I really feel like doing is laying in bed and trying to snooze.

I am craving Hollandaise sauce

I don’t know why, but I woke up after dreaming about making Hollandaise sauce. Little pats of butter being stirred into egg yolks. Lemon. Poached eggs. Smoked salmon. Lightly toasted engligh muffin. Hot, roasted, spiced potatoes. Breakfast of champions. Fresh squeezed orange juice mixed with fresh squeezed grapefruit juice. A hot coffee. I don’t know why, but I don’t think that’s going to be on my neutropenic diet anytime soon. Funny thing is, my doctor already told me I could have just about anything I want from McDonald’s – they don’t care about my cholestorol at this point. Funny. I’m going to have to make a page about what food’s good for me and what food’s not.

Now I’m just hoping I’ll have some good ole’ fashioned Rice Krispies on my tray this morning.

The emotional (and divine) side of what’s happening

Posts to-date have all been factual, and that’s what I really wanted this blog to be for my family and friends – I wanted to keep them all in the loop, and maybe a little distant from the emotions that swirl around this, because they’re everywhere and they are so intense they are difficult to manage. So I really haven’t included any of the short side stories of a more personal nature, though I will. But I wanted to share one from tonight.

This evening, I was doing research at cancer.gov, where they wrote that 80-90% of AML patients go into complete remission after chemotherapy. 10-20% have relapses – most are older people. For people who do not get treatment, for people who at this stage in the disease such as I am at right now, they have an estimated 3 to 4 months to live. I broke down and cried. From the moment I heard the news that I had Leukemia, I struggled with a crisis of faith.

My family is planning a reunion for June – inviting relatives from all over. There was concern about one of the matriarchs attending. She had become quite ill and no one was sure if she would make it through to June. I cried tonight with my mom, because I realized that though this cousin had died, I would have been the cousin who would have died right before the reunion putting everything in jeopardy had I not actually gone and sought help.

My mother chalked it up to divine intervention.

But there is another part to this story.

On the Jewish Day of Repentence, Yom Kippur, we chant many incantations about who shall live, and who shall die, who by fire, who by water, who by heat, who by cold, etc.. It’s a long list. And after I got the diagnosis, all I kept thinking was I was on the die side of this equation.

But as my mom and a visiting hospital rabbi pointed out, we are reminded that teshuvah (repentence), tefilah (prayer), and tzedakah (acts of charity or compassion) will annul the severity of the decree.

But I didn’t do enough repentence. What? my incredulous friends are shouting. Rosh Hashannah, Yom Kippur … Yes – but in my prayers, was I as focussed as I could have been? Honest? Truthful? Yes. Soul searching? No. There are still times when I breeze over the hard parts. Tzedakah – I have always been a generous person and an enjoy being a support of the arts in both my home NYC, and my current city, Philadelphia. Prayer. Prayer hasn’t been high on my list in a long time. It used to be. But it went away. Until I moved to Philadelphia. Ever since I got my apartment here, I lit candles on the Sabbath, said the prayer(s) over them, blessed the bread, blessed the wine … having kabbalat shabbat at home.

This is not an equation for getting closer to G-d or getting G-d to anul his decrees against you. But I’m finding that as I face the biggest life-threatening challenge of my life, I started to address one of the bigger spiritual ones. I know there’s a nugget of something in there, but it’s so ill-formed.