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)

Port side glance (2)

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.) 🙂

Mom and me

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.