Transplant day -4: Chemotherapy again

They are pumping me full of saline solution – liters and liters of the stuff – to keep my bladder irrigated which is the standard procedure to avoid infection. The corollary effect, however, is a lot of … uh … discharge. The Chemo is starting to make me queasy but it’s being managed. My appetite is already gone and I’m feeling sleepy and a little down, but generally still feel like I’m on a good track.

Tomorrow we start radiation. That scares the shit out of me. But I have CDs with me that they can play whilst I’m being zapped so hopefully that’ll be ok. It may be difficult to write for a couple of days given the upcoming procedure, but I’ll try.

Strength and love,
Seth

PS: 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.

Transplant, day -5: Chemotherapy

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,
Seth

PS: 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.

Treatment update

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 …

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 …

Healthier today …

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.

Date	Day	WBC	ANC	Hgb	PLT	Transfusions
10 Feb	Day -3	4.9	147	10.8	25	–
31 May	Today	1.1	264	11.2	68

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.

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?

2nd day of 2nd round of chemo

Last night we started the 2nd round of chemo – that’s considered day 1 or 7; today was day 2 – I just got injected with the Daunarubicin. Cumulatively, this is day 21 on the chemo regiment and that’s how the blood chart reads. To minimize confusion, I will use that number. It’s day 24 in the hospital. < sigh >

Last night was the first time while on chemo that I actually felt nauseous, even having taken the anti-nausea drugs. So I rang for the nurse, explained the situation and they gave me some adavan and I was fine. That was the first direct drug-related discomfort. Hey – I really can’t complain … too much.

Overall today was a good day. Blood counts were good. I had good times and felt very up and made a few laps around the floor. I’m tired now, but it’s 10pm and that’s to be expected. I’m going to take the resterall and fall asleep watch a new DVD sent from my list. (Remember – you don’t have to buy off the list, if you think of something else, great. If you have something you want to lend or send, cool – go right ahead – this is just a guideline.)

Thanks for everyone’s well wishes, cards and pictures.

Strength and love …

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.

Day 8

Well, I’m on my last bag of chemo right now. After this, we watch for infections and monitor my blood production. Early next week, we do another bone marrow biopsy to confirm that we’ve killed off the leukemia, and my doctor has said, statistically, that we’re doing really really well. This is very encouraging. But still such an annoyance to be on this damn hospital bed or chair for as many hours as I am, yet I can’t really do much of anything else just yet.

Lots of friends and family coming to visit over the next few days. Should be interesting. Good thing the camera is charged and ready to go.

Day 5 update

So my white blood cell count is going down. This is a good thing as it means the chemo is working and getting rid of the leukemia. My blood count is down and I’m going to be getting a couple of pints of blood today. This is probably helping to account to for my general malaise and depression today, but I’m hoping this will help me feel better.

My cousin’s daughters made the most beautiful note for me with a bright yellow bouncy ball. Whitney, Charlotte – I wish I coule play with the ball right now, but I look forward to playing catch with you when I’m out of here soon.

Also on the positive(?) side of things, my doctor told me I can have anything I want from McDonalds – that I’m going out to rush to go and get anything but the food has been so damn awful here, anything would help. AND – I just learned – and Ang and Chuck don’t kill me – but the doctor told me I can have bagels that came from one of the bagel bins (sorry about that), but that I’d have to stay away from the Russ and Daughter’s caviar cream cheese and the smoked fishes But soon — very soon.

Day 3-4

I now have a score-card in my room which tracks various things, days, bad cells, good cells, platletts. It’s a good thing to have to track progress. Basically, I still have another 3 weeks to go here, but here’s the score today: Looks like I’ll be neededing blood platletts tomorrow but otherwise doing ok. What should be on the rise is in terms of my ratio of bad to good blood, although not great. They’re checking for fever and blood every day to make sure they don’t have to accellerate anything, but I’m in good spirits.

Only 3 doctors today for this morning’s visit, so no 3-part harmony.

Chemo, day 2 update

Been feeling very groggy today mostly due to nausea and associated drugs to keep it away. So I’ve slept most of the day. Had a few visitors with great stuff: Mary and her son’s colorful dinosaur, a rabbi with some Manischevitz grape juice, UPS came by today with big posters from work (thank you everyone), Gail’s bear arrived, Leif’s photos (beautiful!) and another note from Deb. Thanks everyone. Walls are filling up nicely and I love the well wishes and sentiments.

Otherwise, it’s been a fairly quiet day.

Chemo, Day 2

Started out pretty much as day 1, except I had a visitor during the injection of the Daunarubicin – a colleague from work (thanks, Peter!). I have to tell you, they really have this down pat – I feel a slight discomfort this morning, a little nauseau, but I’m going to try to find a different sitting position, have my breakfast, then take some drugs to alleviate that and sleep for a little while.

Otherwise, feels no different than any other day. The emails keep coming in and I’m trying to answer them as quickly as I can and I sometimes forget that when I’m signed in to Gmail, I’m also signed into messenger there, but I don’t pay attention to it, or the computer is closed but the connection is still good. I’ll try to be better about expressing status there.

 Time for breakfast. Will write more later as time permits.

Day 1 update

It’s been a largely quiet day. I’ve had a little discomfort with nausea feelings, but they gave me some drugs and it went away. They also made me sleepy so I’ve slept most of the day. Although tired, I still have good resolve to beat this.

I finally made a lap around the entire corrider of my floor. 17 laps around is a mile. I think it’ll take me a while to get there, but I had to finally get some exercise – sitting in this room all day with these four small walls is starting to drive me crazy.

 Everyone’s emails and comments have been incredibly touching and inspirational. Thank you!

A little break down tonight: we are putting Voodoo with a dog-sitter for the next month so I can focus on recovery and my guests and focus on their visit, and not having to take care of my dog. It was a little gut-wrenching, especially when I think that my entire life has been made to fit around hers. NO regrets, mind you, but it felt so awful, that a little dog like that can break my heart, and a lot of faulty bone marrow can break my blood.

Same routine as last night: Nurse Ashley is coming to aminister the Daunarubicin over the course of a few minutes and hang the Ara-C afterwards. Maybe more later, but it looks like it’s time to get started very soon.

Day 1 – 7:45am

First, technically, this is considered day 1 of chemotherapy and I’m going to use that nomenclature moving forward. It was a largely quiet night. Nurses were in quite a bit to give more bags, but the sleeping drugs helped me not notice them or wake up enough to say ‘hi’ and then roll over and go back to bed.

When Doctor Kevin came in to greet this morning we discussed how was I was feeling. For the first time I noticed some minor nausea. I don’t know if it’s from just being nervous overall or from the chemo, but they just gave me something for it in the IV and I’m doing fine. My stomach is also a little tender to the touch, but that, Kevin said, is to be expected with the feeling nauseousness.

I’m a hot spot at night: my body temp really rises. And …. I sweat. Laying on a plastic-covered mattress with a thin sheet is just getting soaked every night. And I need more blankets as the night goes on. I told Doctor Kevin about it. I’m hoping they can do something.

Summary so far for first day: I’m not in any pain. I’m looking forward to having company and getting pictures for the hospital room redecoration project.

Breakfast is here. Time to eat. Doctor Kevin tells me I have to eat as many calories as possible this week in advance of my body dying out next week with the rest of my cancerous blood. (I think at some point today, I should post a little something about what the next two weeks will entail – what I just wrote probably sounds scarier than I think it is, but you don’t.)

Ciao, for now.

big pee

4:30am – big pee. probably because they’re pumping liters of saline through my system every few hours. OMG – just filled one of those lavs. only complication? heavy rod with lots of bags and tubes all over the place. back to bed now.