Category: Cancer

I saw Dr. Orlowski yesterday, and his advice to me was not to put off the stem cell transplant any longer. I understand the reasons for this, but it’s difficult to overcome my fears. I planned on having the SCT when the current treatment (Velcade and Doxil) no longer worked for me, but he says I should do it this summer. I was surprisingly calm about it yesterday, but last night I had weird nightmares about SCT and today I’m extremely anxious.

UNC won’t use the stem cells I collected at WFUBMC, so my other choices (if I want to stay in NC) are to go back to WFUBMC or go to Duke. About a month ago, I emailed someone at WFUBMC and asked a few questions, but never got a response. I had some communication problems with them last year, and it was kind of off-putting. I called Duke a little while ago to see if I can get an appointment with Dr. Long.

Dr. Orlowski thought it would work out that the SCT would be scheduled for September if I got on track right away. These things take a little time to get under way.

It seems the Velcade & Doxil is still working well though. My IgA was 490 mg/dL yesterday, which is about the lowest it’s ever been. It still has a little way to go before it’s in the normal range. I’ll probably find out what my m-spike is in a day or so. I’ll just stay with this treatment until the SCT.

Dr. Hayman’s assistant called me today to answer my questions about the bone marrow biopsy. The results from the FISH sounded scary to me, but she let me know that I had normal karyotypes in the cytogentics and that’s what was more important. She said that it had no effect on my treatment plans. (What plans?) I’ll be seeing Dr. Orlowski on Tuesday, so I’ll get more details from him then.

I posted a message on the mailing lists, looking for list members who live in the New York City area recently. The purpose of my inquiry was to pass on some information about a Focus Group that’s being arranged by Advanced Focus Research.
They are looking for MM patients and caregivers to attend. There are a few pre-qualifying questions they need to ask, so I am including some contact information below.

There are 2 compelling reasons to participate: 1) If you qualify, and you participate, they will pay you $150. 2) They will donate $100 to the IMF for every person who participates.

It takes place on Tuesday, June 5th at 11:45am, 5:45pm, or 7:45pm.

Please contact Melissa Goldstein, and please make sure to tell her you heard about it here from Beth so the IMF will get their donation.
www.advancedfocus.com
212-696-4455 ext. 111

I had my first day of tests at the Mayo Clinic. First, let me say that I’m awe struck by the facility itself. Everywhere I’ve been has been clean and well-run. There’s some real architectural beauty there as well. It’s like the Disneyland of healthcare. I mean it. It’s really nice! I don’t want to name any names, but I’ve been in other places in which all I could think about was how icky and gross they are. You know what I mean. Those places where you’re scared to sit in the chairs in the waiting rooms because of those dark stains on the upholstery. Not to mention the big stains of questionable origin on the carpet. I usually feel contaminated when I’m there. This wasn’t the case at the Mayo Clinic. I still took my usual precautions — trying not to touch anything and washing my hands often.

I know I said the accommodations here are nice, too, but I’m retracting that statement. It’s clean and quiet here, but the room a/c has been broken, and I feel like I have a room in Hades. The maintenance guys have been here 4 times now, and I think the situation merits a move to a new room. That’s what’s going to happen later today (it’s 2 AM local time).

Back to the day at the clinic. I got there too early, but that was ok. I had to fill out the usual questionnaires, and that took time. I saw the doctor first, and was impressed. Everything everyone has told me about Dr. Hayman is true. She’s very good at her job. I look forward to seeing her again on Friday to discuss test results. After meeting the doctor, the tests were ordered and off I went. I had blood drawn and deposited a urine sample in one of the stations. It sounds weird, but there are specimen sample stations around the place. when you have the opportunity, you leave yours (inside a sealed container and plastic envelope, of course) in a container. You can find the locations of the containers on the maps which are visible at various points around the buildings. Oh! There are either employees or volunteers who seem to appear out of nowhere just at the moment you need them. If you’re standing there, looking confused, someone will ask you if you need help. If confusion is your normal state, you might find that annoying, but I think it’s quite helpful.

After I had the blood and urine taken care of, I went to pick up my jug. You all know what that is. We’re subjected to a 24 hour urine collection process, which is my least favorite activity, after bone marrow biopsies. I also had x-rays and an EKG and the bone marrow biopsy, which was unremarkable. Nothing like my very first one (“hold on and try not to move.”) at Duke. It was over pretty quickly and I was on my way. Today I have some other imaging study of some kind.

I’ll report on my meeting with Dr. Hayman on Friday.