“So – how is the whole cancer thing working out for you?”
Isn’t that the questions this blog should be answering? And most of my blog postings have glossed over the cancer details in favor of topics that are more fun and interesting. This one is about “living with cancer”. Some of the more astute among you may have picked that up from the title.
The overall answer is, “not too bad so far”. At this point, I would rate my quality of life as very good.
My biggest complaint is time. By this I mean time to work on some of the projects I want to work on. I think this feeling comes largely from splitting my time between two homes; I don’t feel like I get to spend enough time in either place. True, I lose about three days a month traveling back and forth and going to Dana Farber. Actually, it is a lot like having a job, so I don’t expect sympathy from anyone who works. Part of it could be that I sometimes get pretty tired and lose a significant part of a day to napping or simply not having much energy. But overall, I don’t really understand why I always feel so pressed for time. But I do.
Anyway, here are some details about day to day living with cancer. By the way, this posting is pretty long and perhaps not as interesting as some of the others. Feel free to skim or skip.
I am on a 21 day treatment cycle. July 1 will be a “Day 1”. On day 1, we go to Dana Farber where they stick an IV into me and extract several vials of blood which they send off to the lab for testing. I am also required to turn in my Special Bottle which has been my constant companion for the previous 24 hours.
We then wait for a couple of hours to see a doctor or a nurse practitioner. They examine me and review the lab results. I also get an EKG. We then wait for the actual chemo treatment – usually a couple more hours. The treatment consists of a half-liter IV saline plus a shot of Velcade. In fact, the shot is the whole point of this all-day exercise. The shot takes 5 seconds.
Day 8 is much easier. We show up at DF and get stabbed with the IV again. They draw more blood for testing. They then drip a half liter of saline into me. By the time the saline is done, the labs have come back and they approve me for my Velcade which they again inject into the roll of blubber around my belly. Somewhere in here, they also give me Zometa via the IV. Zometa is a bone healer which is why older ladies often tend to get it. On day 8, I am usually out of there after about three hours – with lots of time left for us to drive to NH in the afternoon.
I really don’t mind the IV needles, because the nurses are cute and I get to flirt with them. They think
I am funny. Or at least they pretend to which is good enough for me.
Besides the Velcade, I also take three other types of chemo pills. I take Revlimid on days 1 to 14. I take Panobinostat on days 1, 3, 5, 8, 10 and 12. And I take Dexamethasone on days 1, 8, and 15.
Those are the actual cancer drugs. On top of them I also take Acyclovir twice a day and Bactrim on Monday, Wednesdays and Fridays. I take Lisinoprol for blood pressure. I take Neurontin three times a day. Plus I take supplements: Vitamins (B, D, E}, Fish Oil (2/day), Flax Oil Aspirin, Phosphorus and Magnesium. Plus Prilosec. I have four main pill taking times during the day, but since I am not supposed to take the Prilosec, Magnesium or Phosphorous at the same time as any other drugs, I put them aside. Then during the day, when I walk by, if it has been more than an hour since my last pill, I grab one and swallow it. Sort of like a snack. I am thinking of putting out a dish with some sort of dip to make them go down a bit more easily.
Since I loaded my pill magazine this morning, I am including a photo. This is for two weeks.
So, how does these medicines make me feel? Not too bad really. I am grateful that I don’t have the nausea that people associate with “chemo”. I am not particularly wiped out at the end of a chemo day.
By the way, this medication stuff does not “just happen”. I have to keep on top of everything. I usually spend a few hours during each cycle making sure they ship me my Revlimid. I have to call a specialty pharmacy to make sure that they have the prescription and that they will ship it to the correct local pharmacy on time. I have to make sure that my appointments at DF have been made. I check all the meds as I get them. Last month I noticed an incorrect dosage on the Velcade.
The next question is whether or not this stuff is working. The answer is “sort of”. Some of the most important numbers have been coming down, but very slowly. Doctors say this is good, but then they always say positive things, so I don’t know what to believe. But certainly I feel a lot better about the numbers coming down slowly than I would about them going up slowly – or worse yet, having them going up rapidly. But some other numbers have been going up. I don’t know what to think.
Here is a graph of my “M-Spike”:
And here are my Kappa Free Light Chains:
Well, there certainly are side effects – or cancer effects. Whatever.
This is a fancy way of saying that my feet are numb. Not totally, but they feel really weird most of the time. The degree varies over time, but I have to say the overall trend is that it is slowly getting worse. Still, this does not have a profound effect on my quality of life. I rub cocoa button onto me feet every morning and evening and this is supposed to help.
At night, I often get severe cramps in my lower legs or ankles. These are bad enough to really get my attention. Usually, if I get up and walk around for 5 minutes, they will go away. This might happen two or three times on a particular night and then not at all on other nights.
Sometimes, I also get cramps in my hands, but these are not as bad.
What bothers me most is that these seem to be getting worse.
Dry Mouth and Eyes
My mouth is often very dry. During the day, I drink liquids and this helps keep my hydrated. At night, I go to sleep with a Xylimelt™ in my cheek. These are good for two hours and sometimes, I stick another one in there in the middle of the night. Apparently, this dry mouth is bad for your teeth and my dentist has me in for a cleaning every two months.
Very occasionally my eyes get really dry, but Barbara has some fancy drops she puts in them and this helps.
Constipation and Diarrhea
I doubt that anyone wants details.
Sometimes, I am just plain cranky. Not too often, but there are times when I can get really angry over nothing. Apparently this is a common effect of the Dexamethasone (Dex). This is not as bad as it was when I first started on the Dex, but then I am not taking as much Dex as I was originally.
Maybe this would happen even if I were not on the chemo – part of becoming an old codger. By the way, I should mention that today is my “Medicade” birthday, so I am entitled.
Dex also lowers the “brain to mouth” barrier – which as you all know was never very high in my case. I have to really pay attention to what I am saying.
The biggest change is that I am now 4 ½ inches shorter than I was two years ago. Really. And most of the height loss is in my lower spine. This means that when I am sitting down, my ribs and pelvis are basically touching. This does not hurt or cause any other problems, but my arms and legs are still the same length and I am starting to look like one of those spider monkeys. When I put on a sports jacket that is long enough for my arms, the tails come down almost to my knees. This height change really doesn’t bother me because Barbara tells me that I am still incredibly good looking and what more do I need than that.
The only time I notice it is when I sit at the table on our porch which is high and has low seats. Barbara puts a cushion out there for me to sit on. Without it, I can just lean over and shovel the food directly off my plate and into my mouth. Barbara prefers that I actually lift the food with silverware, so she is really good about putting the cushion down.
This loss of height causes me to bulge in the middle. If you were to grab a hot-dog by both ends and push them together, you would expect it to bulge out in the middle. This is exactly what has happened to me. This is not all bad. It provides a nice target for my Velcade shots.
“Tired” can mean many things: being sleepy, being out of breath, having sore muscles. And the chemo does make me tired – all of those at different times. There have been days when I want to spend two or three hours napping. Some nights, I have trouble sleeping more than six hours and when I wake up I am still tired, but can’t get back to sleep. Other days, I am not sleepy, but I get out of breath easily – just walking up to the workshop. Some days all I want to do is to sit. The tiredness has not been as bad recently as it had been in previous cycles and caffeine seems to help. A cup or two in the morning can make a big difference in how much I get done in a day. In fact, this has not been too bad for the last couple of cycles.
While I can do most of what I want to, there are some limitations. The most important is that I can’t allow myself to be jounced. This eliminates any possibility of skiing, horseback riding or anything else that will put an impact onto my spine. I can probably go bike riding if I am careful to stand with bent knees as I go over bumps. Same with boating in choppy water.
I am also not supposed to lift anything heavy. It is really very difficult for me to restrain myself here.
The doctor says I can travel, but should sit in the front of the airplane (where the air has not had the chance to pick up as many germs from other passengers). I should not visit third world countries. This is due to my compromised immune system.
A bigger problem is that it is hard to schedule things. Yes – for now I am on a 21 day chemo cycle. I know when I am supposed to be at Dana Farber. In theory, there are 12 day periods when we could plan a trip. The problem is that this assumes that I stay on the same protocol. It also assumes that my blood chemistry is good enough for me to get treatment on the scheduled day. If not, they delay things by a week which throws off any plans we might have made.
In reading this posting, one could get the impression that all I do get chemo and take pills and sleep. Nothing could be further from the truth. Life is good. I get to spend most of my time doing things that I want to do. You all know this from having read previous blog postings. So, I would say that the bottom line is, “LIfe is Good”.