Beth Morgan Multiple Myeloma Treatment Blog
My life as a myeloma patient for almost two decades
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.
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!
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.)
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!
From a recent edition of mental_floss magazine:
In these tough economic times, any industry with significant job growth should be cheered, so here’s to Elvis impersonation. When Elvis died in 1977, there were 43 professional Elvii (that’s the plural form, because we said so). In 1990, there were 10,000. In 2000, some 35,000. At this rate, some have projected that one out of every three humans will be an Elvis impersonator by the year 2020.
“Fear Factors.” mental_floss Jul-Aug. 2004: 14
I went to see an Endocrinologist on Wednesday. He’s a really nice doc, and spent a lot of time with me. We wanted to find out a few things about how treatment is impacting me, so he drew blood and I am having a bone mineral density scan next Wednesday. He’s testing for quite a few things. Vitamin D and calcium, thyroid, average blood glucose levels over the last 3 months. Heck, I don’t remember what all. He said it would take a few weeks for all the tests to come back. Isn’t science amazing sometimes?
I have the most terrible cable Internet service in existence. If I didn’t live outside my own DSL service area, I wouldn’t have to use Charter Cable. I’ve even entertained moving so I can get DSL!
During the holiday weekend, there have been between 12-13 hours without service, and still counting. Last month I called in to report that my service was down, and was told it was my cable modem. I bought another one, and after being without service the entire weekend, called in to have it provisioned. At that time I was told there had been a fiber cut. Geez. I have an extra cable modem if anyone’s looking to buy one.
If you’re in NC, and you have a choice between Charter Cable for broadband and anything else, pick anything else.
Today I walked a few laps around the track at the high school for the ACS Relay for Life. I took along my niece and nephew and their mom, my sister. It was a hot, sunny day. I forgot to sign the banner before I left, but they’ll be there until 10 tonight! I can go back and do that later on.
It was a good event. Lots of local people turned up to show their support. The Southern Pines Fire Department was there with a truck. I was sure my nephew would love to sit in the truck, but he got scared and shy! Maybe next year! My niece did get up into the truck, put on a helmet, and had a great time.
I’m crashing a bit from dex, so I’m tired!