Memorial Day weekend

It was a great weekend. I finally got away from Philadelphia for a little while and went down to the shore to visit friends. Angela, Paul, Marnie, their family and friends went out of their way to make me comfortable and it was so good to be out and about. The ride there and back – about 90 minutes from Philly – is a bit tiring on the body, but the pleasure of being around good friends was good medicine.

Of course, sun, drink and music lead to this embarrassing video.

Not to be out-done, Voodoo also had a good weekend with Lenna and Brian: (see the whole Flickr photoset)

Sportin’ a baldy

Sportin’ a baldy today

Originally uploaded by sdpalmer.

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.

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 …

Guess who came to visit last night?

Deb! I completely forgot that Deb was going to be in town. She snapped this picture of mom and me last night. (Mind you – this is one of the few pix I will post with fuzzy head.) 🙂

Sticky situation

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.

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! 🙂 ]

Look who came to visit?!

Alexandra on my mom’s face

Originally uploaded by sdpalmer.

Deb and Neil came down today for a visit with their daughter, Alexandra. It was so good having them all here, but I think, on Mother’s Day, my mom really enjoyed spending time with Alexandra. I think Deb had a good time too, as did we all … kitchen picnic, a little champagne (my first in months!) and a nice walk in the park afterwards.

Voodoo’s 2nd visit with daddy after chemo

Lotsa loving for the daddy

Originally uploaded by sdpalmer.

We had a good visit today with Voodoo and mamma Lenna. Voodoo just got back from 2 weeks of “boot camp” training for off-leash training and general obedience. She is a different dog: calm, confident and responsive! What an amazing transformation. No more leash pulling. She sits when told and when she doesn’t – because she does like to test – she gets corrected and she sits, realizing that we *are* in charge and not her.

Here are Voodoo and I on my bed before we went out. When she first got to the apartment, she jumped up on me to say hi and then ran around the place – jumped up onto the couch, ran up to the loft to the bed. She was soooo good and we had a lot of fun.

There are a few precious photos from today. Click on the photo above, or go right to the Flickr photoset.

As I understand it, right after I get the transplant, I have to be recontaminated by those I will be around regularly after I leave the hospital. I’m hoping to bring Voodoo home right after the transplant so I can get recontaminated with her. (Don’t be alarmed by this notion of “recontaminated” – it’s part of the recovery process after the transplant — I’ll explain more in a future posting about the procedure.)

Thank you, Lenna.

Good, Voodoo!

So where did it go?

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! 🙂

Still “free”

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).

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.

Going back to the hospital … for transplant!

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,
Seth