Month: July 2004

Ebay Charity Auctions

Sometimes I search on Ebay for charity auctions that will benefit MM research. If there’s something I want to get, and some of the money will go to fight MM, I’m lucky to have found it! Sometimes I will also just write to the seller to say thank you.

Today I did such a search and found this item. Diana Krall tickets. You know what bothers me about this? The seller mentions that Diana supports the MMRF. The seller used the words in the auction text for what reason? To attract potential buyers. It makes me angry that someone would overinflate the price of some concert tickets and add these words: “Diana Krall is a supporter of the Leukemia/Bone Marrow Transplantation Program/Vancouver Hospital The Multiple Myeloma Research Foundation.”

Does it seem wrong to you?

Dex and indigestion!

Dexamethasone gives me horrible indigestion. During this time, ranitidine, alka seltzer and mylanta are my friends. This is a typical side effect of dex. Does anyone have suggestions for dealing with this?

I don’t expect to have to take steroids for a whole lot longer. I’m investigating stem cell transplant as my next treatment. After I had a SCT, I wouldn’t be on any kind of maintenance. What’s the point of going through all that just to take drugs again? I know that some folks hope to extend their remissions, but for me it’s a QOL issue.

Dex and blood sugar

When I’m taking dexamethasone, my blood sugar climbs. My endocrinologist doesn’t feel it’s necessary to treat it, because it’s only mildly elevated, as long as I watch what I eat. I have to stay away from starches & sugar. Sometimes that’s not so easy! We had cake at work, and boy did that do a number on my blood glucose.

What I do to lower my blood sugar is exercise. I walk a few miles, and my BG will go down as much as 50 mg/dL. If you’re able, get out and take a brisk walk. It will help. Tonight the first walk early in the evening lowered my BG from 230 to 197. The second walk brought it down to 147. It’s late, and I’m too tired to go again. :)

Virginia

The last time my sister visited from Virginia, we did some searching on the web to find out if the University of Virginia has a BMT/SCT program. If they did, it would resolve one of my problems concerning the transplant process. Whether it’s done inpatient or outpatient, a caregiver is required. In my case, the fact that I don’t live very close to even the most nearby BMT centers (Duke or UNC), means that my caregivers would need to relocate too. Of course they would do whatever’s required, but, if that could be avoided, we would all feel better.

UVA does have a transplant program. I have an appointment for a consultation with Dr. Ross on August 2nd. I also have an appointment next week with with Dr. Comeau at UNC. I want to choose the place that’s best for me overall, so I’m looking at a few different places. I emailed Duke, but got no reply, so I will call them to see if they can make an appointment for me there too. I have to get a list of my questions together. I don’t know if other people “shop” like this too, but it’s a huge deal to me. I’m not in a dire medical situation, so I have the time.

I want to see the facility and meet the staff. I want to know what their high dose chemo regimen is and what other meds they prescribe. How do they handle emergencies? How long will I be hospitalized?

If you can think of other questions I need to ask, please let me know! I have a week before my first appointment.

Web statistics

When you visit any web site, certain things are logged. If your web hosting provider is worth anything, you’ll be able to see web statistics reports, which will put that logged information in a usable format for you. You’ll get some basic info about who comes (hostnames only – no real identity) to your site and how they got there (referrer). When someone types in some search terms in Google, for example, those are logged too. Over the months, I’ve seen a lot of the same search terms come up over and over. I’ve searched for some of the same things myself, and haven’t always found an answer.

I see search strings like: myeloma blog, side effects of thalidomide and others. Something that comes up every now and then is, “what is it like to die from myeloma?” I don’t have the answer to that. I’ve seen it asked on the ACOR MM list too, and never saw a reply. Myeloma isn’t the same for any two people during the course of the disease, so I imagine it doesn’t end any two peoples’ lives in quite the same way either. I have read that often something like pneumonia will be how a myeloma death will occur. I used to wonder about that a lot after I was first diagnosed. I no longer do.