My life as a myeloma patient for almost two decades
Monday was my dex day. I got mad at my kitchen utensils and put them all in the dishwasher, washed the dividers and cleaned out the drawers. One of the utensils was too long, hitting the top rack of the dishwasher, so I was wishing I had a saw. Good thing I don’t.
So now it’s 2:00 am, the next day. I’m still up, and don’t want to be. Luckily, I have nothing scheduled. I can sleep in!
Good news – bloodwork from today has my creatinine back in normal range. Dr. Allen is switching me to Aredia anyway though. I’m glad for that. I was really upset about having a kidney problem. I’m glad it was transient. Who knows? It could have been a lab error too. Ok, I was so relieved when the nurse called that I didn’t get the exact result from her. I’m sure I’ll see it when I get the full report. They don’t have the proteins back yet (IgA). That was done on Thursday. They’ll call me when they do. Keep your fingers crossed for a normal IgA level!
The kidney scare made me realize that there are some things I want to do. It’s a possibility I could end up on dialysis some day, although I am doing my best to see that not happen. I drink 2-3 liters of water a day. I aim for 3, but sometimes I run out of time. I have to get better about that and pace myself.
I decided that I want to buy a mini-van so I can go on little trips with my dog! I will start looking this week. I also decided that I am going to close my IRA. There’s no tax penalty if the money is used to pay medical expenses. The truth is, I may not live to retirement age. I want to, but someone living with MM for over 20 years is a rare thing. I have decided to live for today as much as possible. If a cure is found, or some safe drugs are developed to manage the disease for decades, that will be great! I hope that happens soon. When that time comes, I can start saving for retirement again. As it is now, most people are losing money on their investments anyway, right?
My local oncologist’s nurse just called and asked me to come in to have some more blood drawn today. My labs last Thursday showed an increase in serum creatinine. When you have a normal baseline, and the level increases by 1.0 mg/dL, the manufacturer of Zometa (Novartis) says that treatment should be withheld. My previous serum creatinine was at 1.1 mg/dL and is now 2. I don’t think I want to risk an infusion tomorrow. There’s an alternative called Aredia, which is infused for MM patients over a period of 4 hours. Some feel it is safer for the kidneys. I have emailed Dr. Richardson in Boston to ask him what I should do. A level over 1.6 mg/dL is considered mild renal failure. A lot of MM patients are also on dialysis, and renal failure is up there on cause of death, along with pneumonia.
I went in and had the blood drawn for a creatinine re-test, as well as BUN, sodium and some other stuff (I already forgot what else it said on the paper). My results from today are bound to be affected by my being sick over the weekend. I am probably still dehydrated and could have depleted some electrolytes. I left a note for the doctor, explaining what happened so there wouldn’t be any alarm over any unusual results. I would guess that I’ll probably have to have a retest in a few days or a week.
I called the chemo nurse at outpatient oncology and told her I won’t be in for my appointment tomorrow. I forewarned her that I will be switching to Aredia at a 4 hr infusion time. She said, “Oh my goodness. That will require some careful scheduling.” They are used to doing it at 90 minutes.
Some people use the 4 hours to catch up on reading. I might do that too. I have books I would like to get through.
I spent the day recovering from a GI virus. It started last night and, of course, kept me up all night. I violated my no sugar rule and had some ginger ale. I still don’t feel normal yet, but anything’s an improvement over how I felt all night and this morning.Now I’m trying to replace all the fluid I lost.
My niece had a dance recital tonight, which I couldn’t attend. My sister will get it with her camcorder, I hope.
I have an appointment at Duke on the 21st at 10 am to be evaluated for an autologous peripheral blood stem cell transplant. I am tempted to cancel the appointment and not think about it again. At this point in time, I just don’t want to have one. I don’t know how I’ll feel about it in the future, especially after I’ve exhausted other treatment regimens. I especially don’t know how I’ll feel if I find out I have not responded to thalidomide and dexamethasone or if my disease has progressed.
There are many MM patients who have had not just one SCT, but 2 or even 3. It’s a very aggressive treatment. There’s no way to know how one will respond. If there’s a remission, no way to predict how long it will last.
When I see the people at Duke on the 21st, I’ll have them send kits to each of my siblings to have their blood tested to see if any of them is a 6/6 HLA match for me. They all know about this and have all agreed to be donors if necessary. Statistically, 1 in 4 siblings will be a match. I happen to have 4 siblings. It would be SO nice to have an identical twin. I have a fraternal twin, which is no different than a regular sibling.
Human Leukocyte Antigens (HLA): A series of antigens found on white blood cells and most other cells of the body that are used to determine tissue type. Your HLA allows your immune system to recognize self from non-self. When these proteins are the same for both donor and recipient, an allogeneic stem cell transplant is much more likely to be successful. In stem cell transplantation, the HLA antigens routinely typed for are HLA-A, B, and DR.
My understanding is that the donation process is not really painful. It’s time-consuming and there would be some discomfort involved. Needles in both arms, blood going out through one and back in through the other.
Anyway, I am going to keep my appointment at Duke and get as much information as I can. I will probably have to have a SCT one day, although I’m not planning on it right away (within the next year).
I ordered a box of mixed citrus from Starr Organic last week, and they arrived in good shape. The trouble is, it’s more fruit than I can consume. Some of it has gone bad already, unfortunately. This morning I made juice from a grapefruit, 2 oranges and 1 tangerine. It was more than I could drink at once. I’ll be drinking lots of citrus juice over the next few days. Anyway, I would highly recommend their produce to anyone who’s looking for organic citrus. They also sell avocados and mangos, among other things. Check out their web site for their selection. I may join their monthly organic plan.
I called in to my local oncologist’s office this morning to have them call me when they got the results of yesterday’s bloodwork. I’ve been waiting for a call back all day. I don’t even know if they’re in today. All I can do is wait. One time I called Dr. Richardson at Dana-Farber. He called me back on a Sunday! I bet he never takes a day off.
I want to know what my IgA is, especially. I also need to know my creatinine level, since I have an infusion of Zometa on the 20th. People who are taking thalidomide need to pay close attention to their creatinine when they’re also using Zometa. (All MM patients need to stay on top of their creatinine levels, really.)
My dentist is going to have me come for cleanings three times a year now. She said that she wants to keep the bacteria levels down in my mouth. Sounds like a good idea to me. She also said that she will have me take some antibiotics prior to cleanings. When they’re poking around in your mouth, some of that bacteria can get into the bloodstream.
It’s important for those of us with MM to take good care of our teeth and pay attention to oral health. Next time I see my dentist, I’ll get a better explanation of this and post it here.