Month: June 2004

Self-help Books

I can’t stand self-help books. I especially think the business “self-help” books are a joke. The truly successful business people are too busy being successful to write books telling other people how to be like them. They may have someone ghost write their autobiographies, but they’re not sharing their business secrets with us, are they?

Appointment

I had an appointment with my local oncologist today. We had a few minutes to talk. There’s not much going on in my treatment and my condition is fairly stable.

The steroids are my main problem. :( I have such a struggle trying to decide what to do. I could get off the steroids if I had a transplant. You might be wondering what’s the big deal about taking steroids. I suppose there are worse things. I’ve forgotten what I look like without the Cushingoid features.

Meditation, etc

Starting Wednesday, I’ll be working with a local man to help me overcome my fears about stem cell transplant. He’s a Buddhist, and does hypnotherapy, relaxation and other things to teach people how to overcome stress and pain. I need to be able to put my fears aside so I can move on.

M-spike not increased from prior electrophoreses

The last few months, I haven’t had a measurable m-spike, but I still have an elevated serum IgA (1177 mg/dL this month – usually in the 900s). My doctor is going to have me start the freelight test, starting next month. Here’s what he said about this month’s test:

“The SPEP was read as showing a monoclonal protein, but it overlapped other normal proteins in the beta region and they could not get an accurate densitometry done to come up with a number value. This is not at all unusual for patients with an IgA myeloma, unfortunately. I did look at it and visually the amount did not seem large, and also was not increased to my eye from prior electrophoreses. It might be helpful in the future for us to follow your disease with a serum free light chain assay. I will have that done next time, though for this time it is unfortunately too late.”

BTW, I had been taking just dex 2 days a week. 40 mg on Friday and 20 on Saturday. The longer I’m on dex, the less I can tolerate it, so last month I went to just 40 mg a week. That explains the increase in IgA. My IgA has been in the 900s for about a year now. It had been a little lower (800’s a few times & 700s once) when I was still taking thalidomide. I’m going to go back to the twice a week thing. Does anyone have ideas for any other dosing schedules? Would it be easier to split up the doses and not take them on consecutive days?

Also, I do have high blood sugar when I take dex. Not high enough to treat, according to my endo, but can get up to 200 on dex days if I’m not careful!

Long day

I spent most of the day sitting. I was either driving or waiting for a doctor or an infusion. I had Zometa today at UNC, and I liked it there. I have been having the infusion every 4 weeks in Pinehurst. The facility in Pinehurst is very nice, but I need to save a few bucks, and the cost is higher there. Believe it or not, it’s over $2,000.00 for a 9 mg dose. At UNC I think it’s under $1,800.00. The nurses at UNC a very nice, and they have a great sense of humor. I went to have my infusion with J.W., and we spent most of the time talking to the nurses and to each other.

My IgA was up a bit – about 200 mg/dL. I know why. I cut my dex from 2 days a week back to one. Dex is a very hard drug to take, and it seems to get harder for me the longer I take it. The thought that I may have to take it for years sort of makes a stem cell transplant look appealing.

I refinanced my house. I started trying to do it back in March, when rates were really low. The mortgage company I chose seemed to bumble everything. I couldn’t believe it. By June 1st I decided they needed the boot. I want to recommend my new company for anyone who’s looking for a mortgage. It’s called Countrywide. It took them no time at all to get me refinanced.

My left foot

For a while now I’ve had a sore left foot that seems to get worse when I walk. I had worked my way up to walking 2 miles a day, and I had to cut back to a mile a day due to the pain. When you have MM, you worry about anything that hurts, and the best thing you can do is have it checked out. I had it looked at over a year ago, and it was arthritis.

The dex seemed to take care of it pretty well. When dex no longer gave relief, I saw that as a sign that I needed to go back to the doctor. I saw a foot & ankle specialist in Pinehurst, and he x-rayed my left foot again. It’s still arthritis, but he’s also going to do an MRI to make sure there’s nothing the x-ray isn’t showing. He said the x-ray showed no lesions, for which I’m grateful! I just never understood that arthritis was so painful! Now I really do, and I sympathize with the folks who have it.

I haven’t been prescribed any treatment for it, and I don’t really know what that would be. Do they use Celebrex for that? Is it my imagination, or have I read that Celebrex is also used to treat MM in some cases?

I was up too late because of dex, and now I’m up too early. I really better try to sleep again. I can’t get by on little sleep like I could when I was younger. If I don’t get at least 8 hours of sleep a night, I just feel terrible. Remember when you were 20 and could get by on no sleep, or just a few hours? Those were the days!

Cartoons

If you like cartoons that are made more for adults, there are a few I can recommend. These two never fail to make me laugh. They’re Futurama and Family Guy.

AFLAC Flex One

I signed up for the Flex One plan through AFLAC at work. If you can get your employer to have an AFLAC rep come in to talk to the employees about this, it’s a good thing. I don’t know if they have individual plans for this. Here’s how it works. Your employer deducts an amount you specify from your paycheck, and this is before taxes. You then submit to AFLAC all your unreimbursed medical expenses and you get the money back from them in about a month. This helps me to save money on taxes. It may not seem like a lot, but it adds up. By the end of the year, I’ve paid 20% of my Zometa infusions (since it’s done in a hospital, and I’m on an 80/20 plan – it comes out to about $300 a month!). I’ve paid an awful lot of co-pays for Dr. visits and drugs too. Yes, I still have to pay, but at least now the money I’m using is tax-free. They also cover diabetic testing supplies, which I need for dex days, acupuncture and other things like that. I tried to submit my supplements, but they denied that. It was worth a try. :)

Here’s a short list of things you can be reimbursed for (and not have to pay income tax or bother deducting medical expenses at tax time.)

  • Ambulance service, birth control, contact lense solution, crutches
  • Rx drugs, elastic hose (with Rx), eye glasses/contacts
  • Acupuncture, chiropractor, psychoanalyst, hearing devices
  • Medical copayments & deductibles, smoking cessation products (with Rx)

I’ve had trouble with AFLAC a few times, with the cancer plan, but I do think they’re a good company. If you’re like me, and still in the workforce, this FLex One plan can help save a little money. Even with good healthcare coverage through BCBS of North Carolina, MM has had a pretty serious impact on my finances.

I hope this info will be useful!