Argh

I made a nice long scratch on my new van today at the mailbox. I think it can be buffed out. I hope it can.

This weekend I’m reading Model Patient: My Life as an Incurable Wide-Ass by Karen Duffy. Karen was diagnosed with sarcoidosis in 1995. The book details her experiences before dx, during diagnosis and treatment, and after. After this, I’m going to look for some purely escapist fiction to read. Let me know if you have any suggestions.

Lambda

Dr. Orlowski told me that people who have MM with Lambda light chain specificity are more prone to kidney problems than those with Kappa. Not only do I have the less common heavy chain (IgA), but I have Lambda light chains.
This is a good bit of information about light and heavy chains in MM.

UNC

Yesterday I had my first appointment with Dr. Orlowski at the Univeristy of North Carolina in Chapel Hill. I felt very comfortable there and liked Dr. Orlowski and the staff very much.

I told Dr. O. that I’m not interested in a transplant at this time, but he asked me to talk to the transplant doctor in a few weeks. I agreed to do that for informational purposes. He said that they will support whatever decisions I make concerning my treatment and work with me for the best outcome.

Dr. O. added coumadin (warfarin is the generic I received) to my meds. It’s a blood thinner that will act as a preventative for deep vein thrombosis (DVT), which is a possible side effect with the use of thalidomide.

The Boston trip

As I mentioned, I had an appointment at the Dana-Farber Cancer Institute last week. I was foolish enough to think I should drive. Flying scares me, especially since the SARS outbreaks started earlier this year. I started off for Boston last Wednesday. Within a few hours, I was feeling pain and discomfort in my right leg. I ignored it and kept on. By the time we stopped in Harrisburg, PA 9 hours later, it was unbearable. I hardly slept that night. When I got up about 4:00 am Thursday, I made the decision to reschedule my appointment and not continue with the trip at that time. We spent the next 2 days making our way back to North Carolina, with an overnight stop at my sister’s home in Virginia. I finally feel like I’ve recovered now. I’m sure that I could make the trip again if I took more time, and stopped every hour to walk and stretch my legs. I have to get used to things being different now, and give myself more time to get places. Once my back heals up, maybe driving will be pleasurable once again.

Dex at night

For the second week, I took my 40 mg of dex at night last night. It didn’t prevent me from sleeping at all last night. Last week I did have to take some xanax about 1:00 am on Tuesday morning to get to sleep. I’ll see how it goes tonight. The biggest problems I seem to have with dex is the indigestion, edema and the speedy feeling. I have to say though, that I get pretty crabby! The pulsed dex weekly is much easier to tolerate than the 4 days on/4 days off was.

Looking back

When I was first diagnosed with MM, I just wanted to sleep all the time for several days. It was the only thing I could do that made it possible for me not to think about what was in my future. It seemed like every waking moment, I was thinking about MM. I was researching and reading. I bought several books on cancer. I woke up in the morning, and the first thing that came into my head was, “I have multiple myeloma.” I think this might be typical. Other women I’ve talked to have had the same experience. It’s evened out some now. I know the disease can be treated until relapse, and then you find something else that works and go on from there. People with MM can have a decent quality of life unless the side effects from treatement are debilitating. I’m trying to avoid that as much as possible. I’m trying to make the right choices, and hope that I don’t look back some day with regret, asking myself why I didn’t choose something else. I don’t know if that will happen or not. I’m not there yet.

Stress and disease

It’s well known that stress has an effect on our immune systems. Recently, PBS aired a Scientific American Frontiers called “Worried Sick.” You can watch online HERE. The program is too short to go into any great detail, but there are some interesting facts presented. It’s clear that such things as anger and turbulent relationships can be unhealthy.

Of great interest to me has been a recent thread on the MM list. Many of us can recall stressful times preceeding the diagnosis. Was some event responsible for weakening the immune system just enough to give cancer a foothold? In my case, it was job-related stress (years and years of it). Others spoke of physical and emotional trauma, including injury or surgery, the death of a loved one and divorce.

It’s said that with the millions of cell processes going on in the body every day, something inevitably gets out of control in all of us. A healthy immune system tackles the errant process and we are none the wiser. In some of us, the renegade cells avoid destruction by the immune system, and are allowed to carry on with their deadly mission.

Can healthy people stay healthy by learning to deal with stress better? Is it possible to reverse disease by reducing stress? Some experts believe it’s possible. In The New Physics of Healing, Deepak Chopra talks about the ability of some patients to recover from disease using the mind-body connection (in addition to traditional medicine in some cases). He doesn’t know why the various methods used work for some people and not for others, so it’s not simply a matter of having the will to survive and employing some program of meditation, for example, in addition to traditional treatment.

Whether you’re in good health or not, help your immune system by dealing with stress. Take care of yourself. Get help for depression or grief. Express your emotions. Use meditation or other relaxation techniques to reduce the effects of day-to-day stress. Examine your relationships. Some can be repaired, while others should be made a thing of the past.

Did you see the PBS series, “Healing and the Mind?” I haven’t seen it, but am considering getting the companion book.

Experiment with dex schedule

Normally I take dex every Monday morning. Last night I took it at midnight. I am trying to see if that will make it easier for me to sleep tonight. On the morning schedule, I would have trouble sleeping that night. Well, I had no trouble sleeping last night, and am anxiously awaiting bed time tonight to see how that goes. I do have xanax to take if I have trouble, but prefer not to take any more drugs.