The “eyes” have it

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I had an appointment with an eye doctor (MD) Friday. It had been almost 4 years since I last had my eyes checked. It’s no real surprise that I have developed a cataract at the back of the lense of one of my eyes. Long term use of high doses of steroids can do that. In fact, she said that they can grow rather quickly. If I go back on steroids again I need to have my eyes checked more frequently. I’m really not concerned about it. So NOT concerned, that I can’t even remember which eye she said was affected. It’s just another one of those things that makes me feel about twice my age.

It was such a nice day today that I worked out in the yard in shorts and a short sleeved shirt. I hope the rest of the winter is this mild.

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A couple of things

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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.

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Another year

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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.

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Holy Crap!

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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.

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Anti-emetics

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I meant to post this earlier. When I had the Cytoxan back in October, I was worried about the possibility of nausea and vomiting, so I asked for lots of meds to help prevent it. It was 100% effective. The worst side effect I felt was reflux that night.

Ondansetron (Zofran) – 8 mg tabs. I think I had 3 a day.
Dexamethasone – 2 mg tabs
Prochlorperazine (Compazine)- 5 mg tabs
Lorazepam (Ativan)- inj 0.5 ml

When I went home, I had Ativan and Compazine to take every 4-6 hours. That helped a lot, because I felt somewhat queasy for a few days after.

If you’re going to have chemo, and are worried about the nausea & vomiting that can be a side effect of many of these drugs, speak up ahead of time and let your doctor know that you want lots of drugs to try to prevent it. Why suffer? Oddly enough, some docs/nurses wait until you report feeling nauseated before they give anything. I think premedicating and staying on the anti-emetics for as long as needed is the way to go.

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eBay

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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

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Compression fractures

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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.

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STC soon, most likely

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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.

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