Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

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.

Landscaping

A landscaper is supposed to start work on my yard the week of June 9th. I say “supposed to” because, more often than not, contractors and others neglect to fulfill their promises. I don’t recall this happening with such great predictability when I lived in Ohio or California. It must be a North Carolina thing. What happens is, you hire someone to do a job. They may show up once or twice, but getting them to finish a job is a challenge. In the case of my yard, I had called several landscapers. Some promised to come by to give me a quote and never bothered. Some came to look it over and never came back with an estimate. One came a few times and did some work, but never came back again. I guess he had enough money already! You quickly learn not to pay a penny until it’s completely finished.

I spent a little time on the deck this afternoon. It will be nice to have the work done, so I have something nice to look at. I’m not much of an outdoors person at all. I don’t like getting dirty or sweaty. When I was a kid, I didn’t get sent to my room, I got sent out to play. That was punishment for me. Being outside is ok as long as it doesn’t involve dirt or bugs, or being too hot or too cold.

UNC

I have an appointment at UNC with Dr. Orlowski on June 11th at 8:30 am. I’m glad that’s been rescheduled and look forward to having someone knowledgable about MM to work with who’s closer than Boston. Dr. Richardson at Dana-Farber worked with Dr. Orlowski on a clinical trial before – Velcade, I think. I believe in one of the early phases.

Hard sell

If you ever watched one of those Craftmatic adjustable bed commercials and thought they looked cool, but wondered how much they cost, I can tell you. I went to their web site, looking for prices, and found none. I submitted my contact info online, and asked for pricing. Here’s what happened. One of the Craftmatic telemarketing reps called to set up an appointment for me to see a sales rep. They don’t give you any prices over the phone (or on the web, or on TV). I think I know why. The model I costs over $4,000. I think most of us would immediately lose interest. I’m sure it’s a really nice bed. Afterall, it does have a massage feature, and is adjustable for legs and upper body. I don’t know about spending that much money without even getting to try the thing out though. It’d almost be like buying a car you didn’t get to test drive. Anyway, after seeing the sales presentation, there really was a high pressure effort made to get me to put some money down on one of the beds. There were calls made back to headquarters, even! Could I write a check? Use a credit card? Do I need financing? After an hour and 45 minutes, the effort drew to a close. I guess I should have known!