Monthly Archives: November 2010

Day 22/+13 = Freedom

I go home today.

My counts have been steadily rising for the past few days. I haven’t had any fevers the entire time I’ve been here. I’m off the antibiotics. I go home today. Whew.

My little stem cells are fusing with my bone marrow and pumping out fresh white blood cells. My red blood count is still low. My platelets are very low. I’ll be getting fresh infusions over the next few weeks until things stabilize.

How to sum up the past 3 weeks? The food is not great. I had to really mellow out in order to deal with a lot of time spent in my room. Call Of Duty: Black Ops was a blessing to get me through the past week. I didn’t spend as much time on schoolwork as I should’ve. I’m tired of people coming into my room every hour. I’m tired of being woken up at 4am to have my blood drawn. I’m tired of doctors and nurses waking me up at 7am to ask me how I’m feeling (the answer is always the same: sleepy). I’m quite relieved that I didn’t have mouth sores like I expected.

Now I’m severely immuno-compromised. My  body doesn’t have the antibodies it once had and I’m very susceptible to infection, viruses and other nasty things. I have to avoid crowds. Avoid sick people. Avoid little kids. Avoid pets. Wash my food thoroughly. Go to matinees. Use lots of hand sanitizer. Wear a mask if I’m worried about being around a lot of people. Basically, I need to use a lot of common sense.

In addition to all that, I’m pretty anxious. They said it might happen. I’m a little scared. I’ve been cooped up here for 3 weeks, but I’ve also been under 24 hour care. I haven’t had to worry about anything else but my health. I’ve avoided lots of phone calls and responsibility. I feel like getting out of here will be a little overwhelming for a few days until I readjust. But I know everything will calm down, especially if I stay healthy and fever free.

That’s the scoop. I’m waiting for the doctor to come in and give me my marching orders. Jen has been taking bags of stuff home the past couple of days so I should be able to walk out of here with my computer, blanket, pillow and Playstation.

As always, thanks for all the love and support over the past few days, weeks, months and years. I look forward to seeing you soon.

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Day 13/+4

Happy Birthday to me.

4 days ago I had my stem cell transplant. It went without a hitch. 15 minutes, the taste of garlic, then a nap. The doctors and nurses were very pleased. That night, the nurses brought me a birthday cake and sang me a birthday song.

I’ve been doing extremely well. I had a few days of dry heaves and nausea. Headaches. My mouth sores haven’t come in yet, but my mouth feels a bit raw. My stomach does flips pretty regularly. I definitely feel tired. More tired with each passing day.

Two nights ago I convinced the nurse to let me off the IV pole since I was only getting a slow drip of hydration. Ah, sweet, sweet freedom. It means a lot to not be tethered to that pole. Soon, they will start me on an antibiotic drip so this won’t last long. But I am very much enjoying the freedom of not having tubes attached to my arm.

My counts are low and still dropping. My WBC is .37, HGB 10.1 and platelets down to 17. Today is the first day where I am officially neutropenic. Which is a good thing – my counts need to bottom out and then they will start going up again. Hopefully, by the end of this week.

My goal is to get out on Friday – that would be +9. The earliest we’ve ever heard someone recovering is +8. The average is +12. The nurses and doctors chuckle to themselves when I tell them my goal. Because it isn’t really up to me – it’s up to my counts. The best I can do is stay on my feet, keep eating and drinking and stay infection free. The doc’s tell me that I should still expect a few bad days. I haven’t gotten any fevers yet. I haven’t gotten my mouth sores yet.

So, what’s a guy to do to keep himself occupied while cooped up in here?

I’ve been slowly picking away at a paper I have due for my class. This place isn’t the best for concentration and heavy thoughts on communications theory, but I’m doing the best I can.

For the first few days, I didn’t want to get in a pattern of sitting around and watching movies and a lot of TV. But I’ve mellowed a bit and now I have no problem watching a film in the afternoon. I’ve started watching The Wire – which is as awesome as everyone says it is.

A bit of Skyping. Some fantasy football. A couple books. I’m pretty chill right now. I know these days will pass. And I am extremely grateful that I’m feeling pretty good. This isn’t going nearly as difficult as I thought it would be, from a physical standpoint. I walk a lot each day. I stay out of bed. The doctors are proud.

But more importantly, Jen is proud. She is working her tail off to keep me in clean clothes and good spirits. And I’m not going to let her down by moping and complaining and feeling sorry for myself.

Actually, I’m not going to let any of you down. Thanks for all the cards and well wishes. Big thanks to those of you who have taken up the challenge and donated your platelets. That’s a big effort on my behalf and I owe each and every one of you a beer and a burger (which, I hear, is good for platelet production).

For now, here’s some pics of me from the past few days…

Too Young For Cancer

Here is an important article (brought to me by the lovely and strong Karin Diamond at http://eyespeeledalways.blogspot.com).

Americans between the age of 15 – 39 who are diagnosed with cancer are underrepresented in the medical community. Whether through their ability to handle stronger treatment and raise their success rates or through misdiagnosis (a very common problem, I can attest).

If you have an interest in young people with cancer, this article is definitely worth your read. An amazing perspective. That makes me – and my fellow cancer patients – not feel so crazy after all.

Too Young For Cancer and Demanding Action – WSJ

http://online.wsj.com/article/SB10001424052748703514904575602523936086974.html?mod=wsj_share_facebook

Day 6/-3

Hello all.

I’m still handling the chemo well. Tomorrow is my last day for chemo infusion. Ever. You hear that – LAST CHEMO EVER!

So I’m pretty excited to put chemo behind me. I’m done with this. Last year was a thrill. This year was a bit of a pain in the ass. Now I’m for the big kill and I think its time I put this behind me. So, sayonara chemo.

Besides some queasiness and a couple small side effects, I’m feeling rather well. The doctor’s have started to warn me that the worst is yet to come. But I’ve faced down the side effects before…and I’ll do it again.

The two high points of my day are taking a bath (no one can bother me in there) and crossing off a day on the calendar. Thought I’d share:

I won't give you a photo of me in the bath, thank you very much

Tomorrow makes day 7. If I stick to my schedule, that means that I’ll be a third of the way to home.

Some other good news: the charge nurse told me today that room 6111 is special – everyone in this room goes into remission. And I don’t think he was bullshitting me.

And the Eagles won.

I’ll take all the hope and good news I can get.

Lots of love to you all. Thanks for all the supportive comments and messages.

 

Day 4/-5

Hello all, from my perch on 6E, UCLA Ronald Reagan Medical Center.

Day 4 of my visit. 5 days until I get my stem cells put back in.

So far, so good. I’ve been handling the chemo pretty good, or so the doctors tell me. A little nausea. A little headachy. A little worn out at night. Apparently, the first and last days of chemo are the worst. The middle days are pretty benign. I get about half way through the day in good health until a bit of queasiness sets in. Right about…10 minutes ago. So, I’ll be friends with the porcelain god for the next few days.

They tell me that next week is the roughest. Once my counts drop I’m going to get visited by all sorts of side effects, most of which I’ve had before. So it is kind of like expecting old friends. Or old enemies, I guess. Mouth sores will be the biggest problem. Nausea. Lots and lots of fatigue.

I do my laps around the floor. I’m not allowed to leave the wing, so they are pretty quick trips. I’m sure they will get longer as I slow down. They also gave me an exercise bike, which tells me that they think I’m young and active or they think I’m fat. I’m so full of saline right now, I’m leaning towards the latter.

I’m also pushing to get my room switched to the other side of the floor. I have a pretty terrible view of the other wing of the hospital. And people can see in my room at night as they wait for the elevators. I’m not doing anything exciting for them to see…but still, the other side of the hospital has a view of Westwood and the ocean in the distance. The sun makes a big difference and since I’m here for an extended stay, I might as well push for the best comfort possible.

So, between the computer, the DVDs, books, exercise bike, PS3, magazines and other assorted oddities…sounds like paradise? Except for the constant stream of doctors and nurses, beeping IV poles and essentially being held prisoner in this room. At night I get some anxiety when I try to fall asleep. As long as I focus on the short-term, things stay together. I can’t think about tomorrow or next week or two weeks. I can only keep my eye on pieces of sunshine and know that I’ll be out there soon.

And we’ve been decorating – Ezekial and Eliana brought me a framed picture of a frog and a rainbow. I’ve got photos of all the dogs and cats and kids in my life (which I have to keep explaining to the nurses that none of them belong to me). I’ve got inspirational phrases and a calendar to count the days. And one photo of Golda Maier (which needs no explanation…right?)

Like home. Only with more poison.

I’ll try to check in again before things head too far south next week.

Be well. And thanks for thinking of me. I’ll see you soon.