Category: General

This was at a company picnic about 13 years ago! My sister and I were hamming it up for the photo. There’s nothing like an aluminum pan of rolls to brighten one’s day.

Sometimes I get really nostalgic for the past. It happens more now that I have this disease. I wonder what happened to all those years. They flew by so quickly, and I feel like I accomplished so little during that time. I know it’s not productive to lament the passage of time like that, but I can’t help wondering if it’s a common thing to do when you have a disease that’s described as fatal. It’s not an, “I don’t want to die!” feeling. It’s more of a “where did all the time go?” thing.

I bought a copy of Multiple Myeloma (on ebay for less than $10), edited by Gahrton & Durie. Chapter 1 is very interesting. Written by Robert Kyle, it covers a history of multiple myeloma. Some early cases are included. One patient was treated with leeches and the removal of a pound of blood. Later, he had “steel and quinine therapy,” whatever that is. Another patient received a rhubarb pill and an infusion of orange peel as her treatment in a London hospital. Both were patients of Henry Bence Jones. That’s a familiar name to those of us with MM. Bence Jones identified the protein in urine (he called it “animal matter”) that’s often seen with MM patients.

Some of the most respected MM specialists have books on myeloma being published: Anderson & Richardson, Bergsagel (ed.), Gertz & Greipp (ed.) and Berenson (ed.).

Dex gives me a ravenous appetite at times. I’ve heard from people who have gained 50-100 lbs while taking steroids. I’ve gained about 20-25 lbs myself. I don’t want to gain any more. My doctor tells me not to berate myself for not being able to lose weight while on dex, but I want to at least keep from gaining any more.

One thing that helped me was the change in my dex schedule. When I took it weekly, it affected my appetite more. Now that I take it monthly, I may pig out about 4-5 days during the month. Before, it was a few days a week!

Since many questions about drug interactions and side effects come up, I wanted to let everyone know about ePocrates Rx for handhelds. It’s a free program you can download for your PDA. I can look up a drug on my Palm Pilot and see how it’s covered by my insurance, whether it interacts with any other meds I’m taking and what the possible side effects could be. It’s really amazing, especially since it’s free.

I may subscribe to the Pro version, which is about $60 a year. It includes monographs for alternative remedies.

Here’s the URL:
http://www.epocrates.com/

In October I had blood drawn at my local clinic, rather than at UNC, since my doctor was out of the country. The local clinic folks couldn’t find the report when I was there for my appointiment, but said everything “looked ok!” At first I didn’t think it mattered that much to me, since I feel pretty well, and another appointment is just around the corner for me. When I saw my explanation of benefits from BCBS of NC come in the mail though, I decided I need to have the lab reports! My insurance company was charged about $225 for those tests! I’ll call today and ask for them again. Even if they can’t find the reports, I’m sure they can easily get a duplicate. The results are all in a computer someplace, right?

Cayo Espanto is going to be featured on Oprah and the Bachelor! They’re one of our customers. Please feel free to visit their web site!

Dex can cause increases in your blood glucose levels, which can wreak havoc for diabetics. I stopped over at my mom’s house today and used her monitor to check mine. It was a-okay on day 4 of my dex pulse. I’ll continue to check when I’m on dex. So far, no problems.

This is a good response to a question about preparing to have blood drawn if you have problems getting a good sample.

Some steps that can definitely be taken to decrease your discomfort. You might try one at a time

before the phlebotomy –

1. Drink lots of fluid on the day of the phlebotomy.
2. Wet some paper towels or whatever is handy with warm water and place them on the arm site. This is little more convenient than keeping your arm under the hot water faucet but the running water is actually a little better since it also applies ‘pressure’.
3. TELL the person that you allow 1 attempt. If that is not successful, then you require a more experienced person.
4. TELL each person where the last successful attempt was and point to it.

At the time of the phlebotomy –

1. Ask (demand) that a smaller needle be used. The smallest that can be used to collect a specimen that is not hemolyzed is a 23 gauge butterfly needle.
2. Ask that the specimen be drawn either through a syringe or in a pediatric tube. One distinct possibility is that your internal venous pressure is too low to withstand the ‘force’ of the vacuum in the collection tube. When that happens, the vein will collapsed on itself only to re-establish itself after the vacuum is withdrawn.
3. The tourniquet can be drawn as tightly as you can stand it but cannot be left on for a prolonged period of time. Usually most folks think that 1-2 minutes is tops. After that, there are both chemical and cellular changes that alter test results.
4. Gravity helps with finer stick more than it does phlebotomy since vacuum is the principle here.

Some things to avoid

1. Don’t keep flexing the arm muscles. It too alters chemical balances which could skew test results.
2. DON’T let the phlebotomist slap the site. All this does is increase inflammatory responses and messes up any coagulation testing.
3. When you make that fist – don’t do it too tightly. A firm fist rather than an overtight one is best. One of the more frustrating things is that sometimes veins will “roll” because there is not enough supportive tissue to keep them in one place. So, you put the needle in at the exact place you saw the vein and it moves an inch or more to the side. Rolling occurs more frequently when fists are overtight than when they are a little more relaxed.