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?

My dearest Teddy …

I take it by your conspicuous absence that you have made it safely to Australia, and Steve is taking good care of you in Cairns. As your exchange student in America, I thought it only fair that I give you the latest on your dad from the past week.

His numbers have rebounded and he’s feeling very happy about that. You can hear the strength in his voice, and if you watch his determination in doing chores or working on pet projects, you can really see it come through. He is also really trying hard to get better integrated with work, but the company did what they could in his absence to get by and I think they’re so accustomed to how they’re doing things, they’re omitting from participating in key conversations and activities, and I know this is bringing him down. I think he really feels that he has something to contribute, and desperately wants to contribute to the business, but he’s getting shut out at every turn.

I suppose I could understand why. They don’t know long he’ll be out of hospital – so how much work can he really do and until when? The risk of starting something and not being to finish it would cause a lot of interference. But I think Seth knows how much he can take on and would do everything he could to finish it up, or commit to delivering it in a reasonable time frame, and if not, would have the good sense to work out some transition plan for himself. In the mean time, though, he struggles to find himself at work.

But I think you’ll like the new design of SethPalmer.com. It’s really coming together nicely and is linking together all of the various blogs, podcasts, feeds, pictures, activities, maps, mashups, videos and music you could ever want. A good designer friend is expected to arrive this week – no doubt the review will be merciless, but I think he’s just egging to be challenged. And of course, at the same time, his oldest friend arrives in Philly for a visit too. Should be an interesting contrast between the two, plus his mom — can I tell how much I love her?!?!?!? — should be a nice full visit.

Wednesday, Seth goes to see the doctor. Hopefully Monday’s numbers will be good so Wednesday could be pretty routine, assuming no infections or fevers or what not that would bring him (us) back to the hospital.

Two unusual things have happened in the past couple of weeks. There were two friends that committed to showing up for visits and who simply didn’t. One hasn’t called and it’s been 2 weeks; at least the other called, apologized and explained what was going on – and then went on to say he wanted to visit this weekend, didn’t commit, except to call, and then didn’t. MEN!

But the Voodoo visit last weekend was precious. I didn’t get to see too much since plushy Rhino’s and playful dogs don’t mix well, but I heard all sorts of great things and have seen the pictures to prove it.

Voodoo’s at camp right now! Can you believe it, camp? Steve goes camping and leaves me behind; when Seth’s call camp, I suppose you’re left out of the game too, right?! Well … Voodoo’s at doggie camp for 2 weeks so Lenna and Bryan (who just lost his 12-year dog this past week ) can go on a vacation.

While at camp, Voodoo is supposed to learn off-the-leash training. There is some speculation given her age that it simply won’t be possible, but she’ll have a fun time trying. After that, Lenna and Seth have a lifetime guarantee and can return to the trainer at any time for refreshes. Seth is definitely going to need it! I know he spoils Voodoo, although I do hear Voodoo was much more responsive on the leash than before. And it’s clear that she’s been trained well since she sat without hesitation or fear when Lenna brought out the training collar. I’m sure there’s something in that mind that’s just aching for the training and discipline … she’s already got the cute thing going on!

Otherwise, Seth seems to be in good health and getting stronger. They’ve found 11 possible donor matches and the search keeps going on. Remember to ask Steve to visit http://www.marrow.org to find a clinic nearby so he can get tested. Seth is trying to coordinate a bone marrow drive across his former companies so it would be great if we could his friends too.

Time for me to sign off. But if you write back and let me know what’s going on in Steve’s life, I’ll publish it here (if I can get my horn to press ). Also – snap a photo of the two of you together — it would be nice to put them side by side!

Love to everyone down under
(and above the equator)

// Russell

PS: Steve – he listens to all of that pretentious lounge music you so chided but sent along. I think Seth is conspiring to send you a package of several of those CDs.

Where the numbers at?

So after a couple of days of my numbers trending low for white blood cells, ANC’s and platelets, they are starting to rebound nicely. I met with the oncologist yesterday and she said that if the ANC’s keep trending down I may go back to the hospital very soon just to get on stronger anti-biotics and avoid an infection. I’m hoping that as the numbers are now trending up that I can stay out of the hospital a little while longer – although I do yearn to continue my treatment so I can kick this. But I could do with more home cooking (I’ve gained almost 15 pounds since leaving the hospital and am at a respectable 165lbs – 75kg) and exercise. I’ve been doing a lot of walking outside. The concrete doesn’t give as much as my hard wood floors at home, so it’s been particularly brutal on my knees, but I’m doing much better now.

It was interesting visiting the oncologist yesterday. I was very forlorn there. I think partially because it was a clinic in the hospital and mostly because it not only surrounded me with people with cancer, it was just a significant reminder of how sick I really am. There was a woman receiving out-patient chemo. She was laying in a chair and it was just dripping in. I watched her for a moment and it made me feel like I am never going to get better – but the road is soooo long, I shouldn’t expect an immediate or short recovery. This, of course, goes against everything I am as a tried-and-true NY’er.

Enough for now – will write more later.

Voodoo visit

Finally … kisses!

Originally uploaded by sdpalmer.

Yesterday, I had a great visit with Voodoo. Check out the photos. I miss her. (Thanks, Lenna. Thanks, Allison. Thanks, Mom. — the 3 women who have taken care of Voodoo while I’ve been unable.)

Coming along

My ANC’s are declining, as are my platelets, but my other numbers are looking good and there are still no leukemia blasts in my blood. I’m still at home and feeling a little stronger every day. I’ve been doing more work for my job and accomplishing more things at home. But lately, I’ve been feeling a certain sort of anxiousness to get back to the hospital and continue with therapy.

Not that I prefer the hospital over being home – but I just so want to kick this thing and sitting at home isn’t accelerating my recovery, though it will probably make me better prepared for it.

The next steps won’t be easy. If I go directly to a transplant – which is a possibility (though not a certainty) – it is a long and complex process that will require almost a year to recover. But right now, going back to the hospital without any sign of complication, infection or illness other than what we know right now, won’t do me any good; what are they going to do that I’m not already doing or having done at home? take my pills? change my dressing? draw my bloods?

So I’m trying to be happy at home and that feels very strange. I am. And yet, I have so much to do to really make this place feel like a home. On balance, I have much I need to do to stay on track with work and balance other responsibilities (such as working on settling my father’s estate) and desires (like cleaning up my own things and figuring out next furnishing decisions to make this a home). Plus there’s the regular bill-paying, cleaning up, food shopping, dish-washing, laundry, etc.. Granted, it’s easier with my mom and other family members around, but that’s also a reminder that I’m not well enough to do it on my own yet and that it’s going to be a long time ’till I get to that point, and can’t I just get back to getting better now?

Surviving cancer is an extraordinary journey. It’s deceiving when you’re feeling like you’re in good health, but are reminded by the smallest things that, really, you’re not. And then there are the big things: a living will, a real will, who are the beneficiaries of my life insurance? my investments? etc.. As a single guy, these things start to take on different meaning and character when you’re suddenly faced with the real prospect of your own mortality. They mattered little to me before and I made rash decisions. And now, I have to think these matters through more carefully. Sometimes, I don’t have the mind for it; often, I lack the heart. I completely broke down the other day reviewing the living will with my mom and realizing the burden I was going to put on her should I ever need her to act on my behalf. And even though that’s not likely, I need to have that in place for the foreseeable future.

The past few days have been an emotional roller coaster. I think that’s normal. And I just read a wonderful piece by Jonathan Alter at Newsweek: My Life With Cancer. I highly recommend it. It seems like my past journey, and gives some glimpse into what the future will be like. (Thanks, Ed, for sharing this with me.) Alter also has another interesting piece that I would recommend: Don’t Judge the Edwards Family.

So my big debate for the foreseeable future is this: when I go back to the hospital, what do I put up on the walls. Last time, photos and drawings were a big help. But I intend to put the photos in albums and try to limit the stuff on the walls. While it was cheery and therapeutic, it started making me feel like I was starting to live in a cramped space. So what do you think? Should I walk in with picture albums, a few select pieces for the walls, a gallon of paint and paintbrush? (You know I will!) And that’s what’s making me cheery right now … and will be a good way to end this post, sign off for the evening and go to sleep with a big smile on my face thinking about redecorating the hospital room.

Good news

On Wednesday, I met with my oncologist who had some great news. There’s so much of it, I’m going to have to just bullet it out:

• I’ve gained about 5-7 pounds since I left the hospital 4 days earlier – eating my own food on my own terms on my own schedule is doing good for me.
• My numbers are still hovering and trending in the right areas and I was even able to stray a little from the neutropenic diet last night and had a fresh, beefsteak tomato (with mozzarella and olive oil). This doesn’t mean full off of the diet, but slowly and in moderation.
• The doctor doesn’t feel it’s necessary for me to see her for another 10 days! This is just a good indication that my numbers are good and that I’m taking care of myself.
• My cholesterol – usually not run as part of the suite of tests that’s done on my blood – turns out to be surprisingly, extremely low: 47!

Here’s the best part: there are no leukemia blasts in my blood! Even though my bone marrow showed 60% leukemia in the last biopsy, there have been no blasts in my blood since the last round of chemo. This was something the oncologist told me she thought the hospital would have told me – but they didn’t. It’s a bit unusual to have no leukemia blasts in the blood but have such a high percentage of leukemia show up in the marrow. However, it is not a dire situation.

When I go back to the doctor later this month, we will do another bone marrow biopsy. It could be that my blood keeps recovering and my bone marrow is still ill. And there are many ways to treat such circumstances. For one thing, I may not need a third round of induction chemotherapy, I may be able to go to consolidation chemotherapy, which is a process that reinforces the production of good blood cells. I don’t know yet how it works, but you can bet I’ll be looking into that. This, of course, is a hopeful scenario – an ideal one even – but not one that is out of the question.

And, yes, a bone marrow transplant will still be necessary, but it is not of the same dire urgency as before. My oncologist wants me to spend as much time as possible out of the hospital building up my strength, and I think returning to work and taking on some increased responsibilities will be good, plus more exercise. I’m hoping for a sunny path to consolidation and later to transplant, but I suddenly don’t feel the scourge of a death shroud surrounding me. I feel like we’re on the right path and I’m happy that my body is responding as well as it is.

I have to say, though, that during the check-out procedure, I’ve come to learn the costs of health care. And it frightens me to think that so many Americans in the middle of the income spectrum would be caught with such stratospheric bills for catastrophic care: just one of my anti-biotics costs $2,400 for a 30-day supply. My co-pay was $35 on that. But what would a person do without health care? Aetna, my health insurance company, sent me an evaluation of hospital charges that are covered and what I owe. Tens of thousands of dollars in charges and I owe $600-some-odd dollars. I can’t imagine what a less well-off family would do.

And in some ways this frightens me worse than my own diagnosis. Maybe this is a cause for me to pursue when I’m strong enough. I don’t know. But truly, when I was checking out from the doctor’s office yesterday, the enormity of the costs came over me and I got very choked up.

But – this is not a political blog … I’ll have other resources for that.

On to the rest of the update: Alan and Sheera have been here and they’ve been wonderful giving me hand setting up the home office with all the various new furniture and supplies, and helping with the shopping, the cooking, the cleaning, the laundry. They’re away now and the apartment seems very empty, but they have such a presence though in my heart – they’re not that far away.

My mom’s here now staying with me. Close friends are coming in this weekend for some serious geek play and catch-up, and hopefully some more apartment set-up (I just bought some furniture today that will need to get set up and another piece moved) so this is all coming together nicely.

I’m finding being home to be extremely cathartic, especially being around my family, and finally doing some cooking and good eating. The stairs to my loft are still a bit of a challenge, but I take them slowly and try not to go up and down too often during the day. I did a lot of walking today and must remember to get out more: while my apartment is big and there’s plenty of walking space, it’s hard-wood floors, and walking on the concrete outside is a very different set of skills. But it was good, although I know I pushed myself a little too far today.

Friday, I’m planning on attending a meeting for work, in person! I can’t wait. I’m looking forward to seeing a lot of people, and hope to start to ease back in to taking on more of my former responsibilities. I miss the challenge so I’m looking forward to seeing what I can reasonable take on for now.

So for current correspondence, please use my home address. Email me if you need it.

With continued thanks for your on-going love, strength and support, sending everyone my very best, too,
Seth

First night at home

It’s a curious thing to have your family around you again; it’s almost like I was growing up again – except my mom’s older, my brother’s married and is here with his wife … and I’m still single

Anyway, I didn’t wake up at 5am as I had feared, out of habit for the nurses to draw blood, but I did awake at a semi-respectable 6:45am, which is not too much earlier than when I’d have to get up to walk Voodoo. My brother and Sheera are downstairs on the aerobed and my brother who doesn’t snore, is. My mom is curled up on the couch and she looks like one of the adorable creatures that you just have to pet and love.

My nurse is coming today. Supplies were delivered yesterday. And I think Alan and I are going to spend a lot of time getting some basic closet and office organizational stuff set up today so I can start putting things away instead of (still) living out of boxes of clothes and linens and being buried in paperwork which is growing even deeper with all the medical stuff I now have to deal with.

6:52 and my stomach’s growling. Time for meds and some food and to get my day gently started. I know everyone else wants to sleep and I feel a little badly about getting going but, curse the hospital, I’ve become a morning person again.

I am home

Exactly 8 weeks after I was admitted – to the minute – I left the hospital. This morning at 11:30am, I left the hospital and my Uncle Lenny brought me home. The car ride was the weirdest part of the move. When you drive in the car, you body compensates for all sorts of shifts and movement that I haven’t had to deal with in 8 weeks. By the time I got home I was exhausted. No fault to my Uncle Lenny who was driving – it’s just the nature of the beast.

I’ve been up and down the stairs in the loft several times, and have walked all around the apartment. I have gone to my own bathroom and now I am comfortably ensconced in my bed with my laptop finishing up this post. I had dinner tonight on my own schedule and am so looking forward to not having to wake up at 5am tomorrow to draw blood – though my home health nurse will be here around 9:30 or 10:00 to draw bloods and get me set up at home.

Too tired to write any more right now, but will continue blogging right here.

I’M GOING HOME!

I’m going home from the hospital either Friday or Saturday. My ANC’s are climbing, though they’re not over the neutropenic threshhold yet, but my other counts are good. As the doctors explained, I’m more at risk being in hospital for catching some other bug, bacteria, infection or virus than I will be at home. And the psychological effects of resting at home before the next round of chemo are good all around. Additionally, while I’ll still be on the restrictive neutropenic diet until my numbers climb just a little bit higher, I will be able to cook my own food which will also help my overall health and build up my strength (not to mention putting on some weight, since I am now just a wispy 150lbs (68kg).)

I will be coming to the hospital once a week to meet with my doctor and I will be having home health care from the hospital come to visit to attend to certain on-going medical needs twice per week. I am meeting with the nutritionists and physical therapists and everyone else I need to to make a good transition to being home and taking care of myself at home before I return for my third round of chemo (yuck!).

I am so looking forward to having Alan and Sheera here with me – thus the timing of their trip now!

I don’t yet know how long I will be at home – I’m hoping for at least 2 weeks. It’ll be good to welcome you to my home when we’re able to arrange visits — besides, there’s still have plenty to do to finish setting up my apartment!

Many thanks and love to you all for your visits, your emails, your blog comments, your calls, and for all your strength! This isn’t over yet and I’ll still be blogging from home – and when I return to hospital for further treatments. So please remain in touch. I am sometimes overwhelmed by the number of comments and emails and calls and can’t get back to everyone, but please know that I appreciate the contact very much and love you all for your continued support.

Strength and love,
Seth

Family crossing

I’m so excited! Alan and Sheera are arriving here Thursday night. So much to catch up on and I’m so glad they’re coming now.

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.

Voodoo update

Voodoo napping

Originally uploaded by sdpalmer.

Voodoo was being taken care of by Allison for the past several weeks. But it’s been a long time and Voodoo is now with my friend Lenna in suburban New Jersey. Voodoo’s been getting good exercise and after a 2 mile walk today, Voodoo crawled up on Lenna’s couch, on top of the softest cushion with a pillow and a book and took a nap.

Voodoo is adjusting to living with Lenna and Lenna is learning to live with Voodoo. It took me a year to teach Voodoo basic commands by voice. Lenna has started going to obedience school with Voodoo. Voodoo (and Lenna) is learning a lot. Lenna has other animals in her life – a cat, a horse, a great boyfriend and the boyfriend’s dog. Lots of new experiences for Voodoo. But Lenna and Voodoo are doing well together and I am forever grateful for her generosity and love.

I miss you, Voodoo.

Celebrating Deb’s Birthday

IMG_0878.jpg

Originally uploaded by sdpalmer.

Yesterday, Deb and Neil came down so we can – as we always do – celebrate Deb’s birthday together. This was a milestone birthday so it was particularly important and as you can see from the fine vintage malt beverage I provided, we got off to a rockin’ start.

We had foie gras (don’t gasp – it’s cooked and shelf-stable), fresh tuna salad, ginger ale (no – Deb did not share the Colt 45 ). It was a lot of fun.

To see all the photos, see the set at http://www.flickr.com/photos/sdpalmer/sets/72157600040571866/

Home couldn’t come sooner

I’m really looking forward to going home soon. But with my ANCs still floating in the high 100′s, I’m still a long way away from going home. We’re thinking that they’re still so low because I’m still fighting the infection in my lymph node. < sigh > On the one hand, that’s a good thing that I actually have an immune system to fight such infections, on the other hand, I can’t wait to get home and get out of the hospital.

I just sit here patiently every day, waiting for my numbers to recover and trying to exercise to get ready to go home. So I think I overdid it the other day when I did 10 laps; I was totally exhausted yesterday and my blood pressure was very low. Tomorrow, I start with a physical therapist since I also have stairs to negotiate at home and all I’ve done is flat-level exercises and laps around the floor.

Luckily, this “delay” in going home will help me find the last of the furniture I need to finish setting up the home office and finish setting up the rest of my apartment. I don’t know why it’s so difficult finding a good desk and home office set up but I can tell you this: after years of putting up e-commerce sites, there are dozens of good lessons to be learned from a lot of places. Images are too small. Categorization is really bad. Descriptions are poorly lacking. Dimensions are not consistently specified (feet and inches versus inches only). Colors are inaccurate. It’s sometimes just not worth doing business online if you’re not willing to invest what it takes to make a successful sale online. (I’m not going to get too deep here, but I’ve really learned a lot sitting here in my hospital bed doings as much online shopping as I have.)