Category: General

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.

The MMRF’s “Score for a Cure” raised nearly $75,000 dollars for multiple myeloma research!

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.

These are the US states through which I’ve travelled (the red ones).

create your own personalized map of the USA
or write about it on the open travel guide

The holiday weekend was relaxing. We grilled some chicken sausage and vegetables on the fourth. If you get the chance, try some Al Fresco chicken sausage — especially the teriyaki and ginger. They’re really good. I can’t speak for the other flavors. There’s one thing about this stuff that makes me cringe, and that’s the casing. Why does it have to be made of pork intestines? Even so, I loved this sausage. I just don’t understand how I can overlook the intestines. :) It’s just that good.

I was fairly disturbed when I got my mail today, and found campaign literature from a local man who is trying to keep his seat in the NC House. It’s not likely he will, because he’s in the dog house with the local Republican party. Anyway, back to the item that caused my blood to nearly boil. The campaign literature is covered with pictures of President Reagan. I remembered how the Reagan family was upset the Pres. Bush used his pictures in some campaign ad, and their spokesperson issued a press release saying that permission was needed before anyone could use his likeness. She also added that permission was not likely to be given.

I emailed the candidate and told him I thought his use of the images was opportunistic and disrespectful. (In such poor taste!) I sent a copy of my message to the local newspaper too.

Why did this make me so mad? I don’t know. Maybe it’s because I just got home from seeing Fahrenheit 9/11. I’ve never trusted politicians. The movie brought a lot of issues to the foreground for me, and I wasn’t feeling very forgiving.

The MMRF got a good plug on Fox today. Kathy Giusti was shown throwing out the ceremonial first pitch at the Mets vs Yankees game this afternoon. She did a good job! Ok, she threw like a girl, but it was just ceremonial. :) I don’t know how much money was raised, but the final score was 10-9, with a Mets victory over the Yankees.

If you haven’t made a donation to the MMRF or the IMF this year, please do so!

Here are some links to help you find your way.

MMRF
IMF

I’m 99.99% sure I’m going to go ahead with a stem cell transplant. There just doesn’t seem to be any other chance at a prolonged and drug-free remission. Of course I know that the possibility of no remission at all exists. I believe I would at least get a near complete remission, because I did get a pretty good response with the minimum dose of Thalomid + dex.

This is quite a change from the way I was thinking in January, 2003 and for most of the time thereafter. It’s the dex that did it. I’m near the end of what I can tolerate. It’s just wearing me down.

SCT is a very, very scary thing for me. I don’t like the idea of being in the hospital for 3 weeks and then having to stay in Chapel Hill for another 2 weeks. I don’t like being out of control of my life like that. I’ve never had chemo, let alone a lethal dose of chemo. I have this really unrational fear of vomiting too. It may sound weird, but it’s true. It’s called emetophobia.

I have an appointment with a doctor at UNC’s BMT center to talk about this again and possibly set a date and get my questions answered.