Beth Morgan Multiple Myeloma Treatment Blog

When I was first diagnosed, I went to one MM support group meeting. It was just me (and my brother & sister) and one other MM patient and her husband. The whole cancer thing was very new to me. I asked the other patient what was important to keep in mind. She said that what she cares most about was that everyone treated her the same as they did before she had a diagnosis of cancer.

People say things like this, but do they really mean it? Or is it something that sounds great in a society where stoicism is admired? I’m going to go out on a limb and say that, unless you were previously addressed as “Your Royal Highness,” you want to be treated better than you were before your diagnosis.

Of course I believe that people should be nice to each other all the time, not just when times are tough. When you’ve been told you have a life threatening disease, you need extra niceness. You don’t want to be treated the way people treat you when they assume you’re going to be around another 40 years. Cancer is a nasty ride, emotionally and physically, and I want people to be nice to me. I’ve been thinking about having bumper stickers made like the ones you see that say, “Be nice to me. I donated blood today.” How about, “Be nice to me. I have cancer?”

What’s my point? I’m saying that you don’t have to pretend you want people to ignore your condition. You need extra love and attention. So do they.

I accidentally washed my beeper again. This is the third time in recent months I’ve done this! Can I blame it on thalidomide?

It’s been a while since I posted much, so here are some updates.

It’s my time to do 4 days of dex (40 mg each day). This time I feel extra tired and hope I can sleep tonight. I plan on taking something to help me sleep. 3 more days to go.

I had a flat tire on my new car. Since when does a new tire cost $140?

Acupuncture has helped the tingling and weird feeling in my hands. I’m going for more on Friday. I really hope this is tax deductable, because it costs a fortune to go 1-2 times a week. Even if you have insurance, a serious illness really kills your finances.

There’s a really interesting article about sleep and cancer here:
Stanford Study

I got a new spam & virus filter machine at work, and can’t wait to get it! We filter all our dialup/DSL customer email for junk mail & viruses, so this one is for web hosting customers.

It seems like it must be SCT season. Lots of people on the list are going through them right now. Dan is home from his, after 17 days in the hospital. I wish I wasn’t so afraid of the process. In some ways, it would be good to get it over with. I guess I want to know how my disease responds to treatment and have some idea about relapse times. I know someone who had 2 years of remission from VAD. I would guess there are people who have had lengthy remissions from thalidomide and dex. If that’s possible, then I want to avoid the toxicity and complications that come along with SCT as it’s currently done.

My doctor says there’s no rush to worry about stem cell transplant right now. He thinks my MM is stable, and the IgA is slowly going down as a result of 5 months of the thal/dex combination and Zometa.

Doc says IgA was 781, so it has resumed its downward course somewhat. Lots better than where it started, at 4625 at the end of January!

I’m hoping it’s the dexamethasone that’s largely responsible, because I’m afraid I might have to stop the thalidomide before it causes too much damage. I think I have the start of PN in my hands & feet.

I had my monthly appointment with Dr. Orlowski at UNC yesterday. I expect to hear that my IgA is down again, based on the fact that my total protein is down again (6.5 g/dL). Albumin is also down. I’ll post the whole report once I have all the numbers back.

Dear subscribers, one of the key issues that we are faced with at the
Cleveland Clinic is where do we stand from the issue of using vitamins.
Vitamins are critical for health and disease, however are tricky to use as
too much could be problematic and could result in significant side effects
that at some stage could be irreversible.
The following two links will address the role of vitamins and iron in
anemia, as well as a general view of vitamins in general.
Our group at the Cleveland Clinic hope that this information will be
helpful to you and your loved ones.

http://www.clevelandclinic.org/myeloma/anemiaANDvitamins.htm

http://www.clevelandclinic.org/myeloma/vitamins1.htm

Thanks again for your interest in The Cleveland Clinic Multiple Myeloma
Center.
Mohamad Hussein