Category: Life

Life

End of first cycle

I had Velcade this morning, ending cycle one. I have next week off, and then will start cycle two. I guess the week off is included in the cycle, since they’re 3-week cycles. A couple hours after, I get a bad headache. I actually have to take percocet for the headache.

Kathy Griffin is making the rounds on TV this week. She was on Ugly Betty last night and the View this morning. Normally I don’t watch daytime TV, but I have TiVo record anything with Kathy in it automatically. She’s just too funny to pass up. If there are people or things that make you laugh, take full advantage of them. Laughing is good for us!

Hats

As you know, I lost my hair after I had Cytoxan. Since then, I’ve been wearing a baseball cap to keep my head warm. Also, let’s face it. I look terrible bald. Here’s the thing though. I only have one hat. It’s getting dirty, and I need a replacement. Here’s my offer: Send me your company’s logo hat and send $25 (tax deductible) to the IMF, and I’ll wear the hat every day until I get another replacement! I’ll even post a picture so you can see your hat fulfilling its lifelong ambition of covering the head of a cancer patient. What more could a hat wish for? If your company wants to sponsor my bald head, please leave a comment for me and I’ll get in touch with you.

A couple of things

I got the results of my labs from last week. My IgA is at 2116 mg/dL (approx 1300 in October and 1500 in November) and my m-spike is 1.9 g/dL. I had this fantasy that my MM would be stable and I could delay treatment further.

Susan is having her SCT now. She had high dose chemo on the 27th and 28th, and the stem cells were reinfused today. She’s blogging about her experience at http://susansjourneywithmyeloma.blogspot.com/. Stop by and wish her well.

I noticed from my web stats that someone searched on the cost of neupogen. It’s expensive! My 10 day supply of neupogen and catheter care supplies was in the neighborhood of $10,000. This is why I take keeping my insurance very seriously. Even if you have insurance, cancer can be a huge financial burden. I can’t imagine what people go through when they don’t have coverage.

This is the regimen I’ll be starting on the 9th: Velcade 1.3 mg/m2 on days 1, 4, 8, 11. Doxil 30 mg/m2 on day 4 after Velcade that day. I had a bad dream about it a few nights ago. My nightmares are always about being in the hospital and/or having chemo. I usually find out that I was given the wrong dose or the wrong drug, or it was administered improperly (in these dreams).

In the days before cancer, I’d have plane crash dreams. I don’t think anything’s ever going to stop the “back in high school” dreams, where I’m at my current age and somehow I end up in high school again because I was mistakenly graduated. All I can do is protest that it doesn’t matter anymore because I have a university degree and, besides, I’m old enough to drop out anyway. I can’t just walk away, because I’m at boarding school in Wisconsin and I have no car or money. Oh, and I still have the “stuck in San Francisco without any money” dreams.

Another year

I can’t believe it. Another year is almost over.

I haven’t written much in the last several days. A lot’s been going on, but I haven’t had time to write. And, my typing finger is sore from work. :)

I had an appointment with Don Gabriel, a transplant doc at UNC. He’s a very nice guy, and I liked him instantly. I’ve been researching a potential problem he brought up, but have discovered that it’s not a problem at all. Some doctors believe that, to have a successful stem cell transplant, the cells must be harvested when the % of plasma cells in the bone marrow is below a certain number (like 20%). Mine were at 30% at the time of my harvest. I was very worried that I might have to go through the harvest process again, but I put in an SOS to the IMF and was assured that I’ll be ok to go ahead without a second stem cell collection by members of the scientific advisory board. Now my questions are: Do I have to have more treatment before the SCT? Can I use just melphalan alone, since cytoxan didn’t have any effect on my myeloma?

I’m scheduled to begin Velcade + Doxil and possibly dexamethasone on January 9th, 2007. Of course, I’d be happy to find out that I didn’t need additional treatment before the high dose chemo, but I’m guessing it’s not likely. It’s all getting closer, and I’m nervous and afraid.

In the mean time, I’m going to try to forget that I have cancer. I’m just going to enjoy this treatment-free time.

Oh! For those of you who wonder about this… when you stop dexamethasone, you do lose weight (if you gained it from the steroids). Without trying, in my case, which is cool. I still have the moon face. I wonder how long it takes for that to go away? Anyway, I lost just under 25 lbs so far. I’m guessing the chemo and the SCT will melt away the pounds as well, but I don’t recommend it!

Amneris Solano, thanks for the very nice article you wrote in the Fayetteville Observer. Thanks, Matt Moriarty, for the article you wrote for the Pilot. I hope we’re successful in raising the money we need for the IMF.

Holy Crap!

That’s what Peter Boyle’s character, Frank Barone, used to say on “Everybody Loves Raymond,” a CBS sitcom which had its last season last year. Peter Boyle, who suffered from myeloma, died on December 13th in New York City. His family has asked that donations be made in his memory to the International Myeloma Foundation.

eBay

About a year ago, I got certified to teach the Basics of Selling on eBay, but I only held a few workshops. I was on high dose steroids and Revlimid, and I just didn’t feel like doing much. Before I go back on some kind of treatment again, and then onto SCT, I wanted to put on some more workshops. If you live in the area, and would like to get some training to help you buy or sell on eBay, click on the URL below. I just got a new camera, so I’m going to scrounge around the house for stuff to sell. :)

http://www.connectnc.com/memberservices/workshops.shtml

Compression fractures

My latest skeletal survey was done on October 4th, and I just read the report yesterday. The radiologist reported observing wedging from apparent compression fractures at T12 and L1. This wasn’t something I had seen in the surveys done in years past. It may be a new thing.

STC soon, most likely

I saw the doctor yesterday. The chemo I had in October did nothing for me, so I need to have some more and then on to a transplant. They don’t really do many bone marrow transplants anymore. Instead, they use stem cells. It will probably be February by the time I’m admitted for my transplant. In the mean time, I’m going to try to enjoy myself as much as possible, exercise a lot more (so I can be stronger for the transplant) and do some kind of chemo, which has yet to be determined. I failed a few treatments, so there’s one choice left, pretty much (Velcade in some combo). I’m in a situation where my cancer grows whenever I’m not constantly being treated for it. Time off is great and feels wonderful, but my disease likes it too. I’m not going to lie. I worry about my dog outliving me, and what will happen to him. How can I be sure he’ll be taken care of and loved? My cat, too.

I have an appointment on December 13 to see the transplant doctor.