Today’s update

ANC’s are coming back (200), white blood cells are up to 1.0, hemoglobin is up to 9.3 and only my platelets slipped back (to 106 – but still within a good range). Oh – and did I mention I did 10 laps today (so far) and it’s just mid-day?! So I need to work on doing stairs. We just put an order in for a (real) physical therapist to help me with that. Hopefully, she’ll come by soon for my first stair-climbing in 2 months.

Grrr … numbers. Yeah … numbers.

ANC’s are down to 96 today – I’m hoping the trough of a bottom-trend. Platelets are up – 117! – which is really nice. Come on ANC’s – time for catching up so I can get out of here!

I got ANCs today! (again)

Woohoo! 192 ANCs just reported. Body on the mend. Maybe 420 was too high over the weekend, and I think yesterday’s zero was just wrong. 192 seems right.

I’ve been having terrible night sweats since yesterday – 4 times they needed to change my bedding last night after waking up sopping wet. I know I have some immune system fighting something! As a matter of fact, they took me off one of the anti-biotics but as of today, given the sweats, they put me back on the Vancomycin.

So I’m feeling encouraged today, but know that the ANC number can vary as I start to recover. So don’t expect a steady rise, necessarily; it’ll be an upward trend that we want to watch out for.

Homeward bound

Don’t get too carried away – I’m not getting discharged from the hospital immediately, but soon-ish. We are watching my blood numbers for positive signs of recovery so that I can go home and get more rest – physical, spiritual and emotional.

Key indicators will be the return of my platelets which are progressing nicely on their own; stabilize the hemoglobin – which is coming along, but doesn’t show enough positive trend yet; I need ANCs to leave the hospital – that’s my immune system. Now, on Sunday, we got a count of 420 ANCs which was very encouraging, but then today it came back as 0. 😦 Inevitably, miscounts may happen, which is why we need to watch for trends. For the ANCs, over 500 and I’m no longer neutropenic; closer to 1,000 will give the hospital much more confidence to discharge me. Then there’s the white blood cells. They are starting to inch up but there’s no real trend yet.

This is going to take time – my doctor thinks that we’ll see things start to trend up this week so that hopefully next week there’ll be a point that I can return to my own apartment in Philadelphia and prepare for the next round of chemo.

I have seen a lot of family and friends over the past few days and have received many emails, voice mails, comments on the blog especially about the bone marrow transplant. Thank you everyone for getting the word out and for helping to save lives … I had little appreciation for what something like that truly meant until I was here; and when I get out, it will be my number one priority to continue to help other recover from this illness, whether through supporting bone marrow registry drives, visiting hospitals, or volunteering to help out through the American Cancer Society’s many support programs. (Did you know they have a free service called Road to Recovery? My dad’s friend, Gail, told me about this one. A volunteer will come and pick you up either at your house or when you’ve finished outpatient chemo and drive you home so that you don’t have to battle the side effects of chemo and get home? This is an incredible thing. And it’s meant for all cancer patients.)

More to come soon.

Strength and Love,
Seth

On to round 3 …

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

The way forward is clear now:

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

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

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

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

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

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

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

4 laps today

I did four laps around the floor today. G-d, how boring. But it started because I wanted more ice in my cup and as I passed the nursing station, one nurse told me I had a lot of mail. I couldn’t carry the cup, push the stick (I was getting an IV infusion of something this morning) and carry the mail so I told her I’d get her on the next lap.

So it was get ice, water, walk around the rest of the floor, drop off in my room, walk around again. Pick up the mail. Walk all the way around the floor and drop off at my place. So I figured I have to do 4 laps today in any case and I’m half way through it so I’ll just do the rest. It’s so boring. At least at the gym you can talk to someone, watch TV, listen to music (yeah yeah yeah – get an MP3 player, Seth — long story there and don’t anyone rush to get me one – I have several).

Whilst I was walking around the floor today, another “guest” on the floor was doing her laps and she was going in the opposite direction. It was weird that we kept bumping into each other twice per lap, and we were trying to figure out why each of us were comfortable walking in each of our directions. We couldn’t figure it out.

ENTs came by today to take a look at the growth in my lymph node. They tried to see if there was any puss they could push out of it (not an unpainful process) … to no avail. They said looks like it’s infected and inflamed but it’s not growing any more which is a good thing so we caught it early and we’re treating it with the right anti-biotics. It could take as long as 2 weeks for this thing to go away completely, but with my vanity, I’m going to hope for something much sooner. 🙂

Russell has arrived

Russell has arrived

Originally uploaded by sdpalmer.

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

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

Thank you, Steve!