Life With Cancer

As I write this it is 4:30 in the morning. I have been up for nearly two hours after a whopping 2.5 hours of sleep. This isn't unusual. As some of you who visit my site regularly know, I have been diagnosed with a rare form of cancer called Multiple Myeloma. There are only about 20,000 cases a year and it is currently 100% deadly. The cancer is in the plasma cells within your bone marrow. The plasma cells mutate and clone themselves and take over your bone marrow. As your bone marrow produces your blood, it screws that up and then it travels through your body damaging your organs as well. Thus the multiple in the name, as it effects multiple organs at once. Left untreated, it also sucks the calcium out of your bones, leaving them full of holes and brittle. Without treatment I would likely be dead in a couple of years.

The treatments are going well, but there are side effects, like being awake in the middle of the night! I get treatments on Monday and Thursday, two weeks on, one week off. The treatment currently consists of 3 drugs, 2 of which are given through an IV. The first is called Aloxi and it's used to combat nausea. The second is a very powerful steroid called Dexamethasone, of which I get some pretty heavy doses. The Dex, as everyone calls it, helps fight the cancer but has some side effects, one of which is insomnia. This is actually great the day after treatment as it keeps you up and going, allowing you to actually get things done. Unfortunately, by the second day it starts to wear off and you come crashing down and turn into a zombie!

The actual chemotherapy is called Velcade and I am getting it as an injection, something that was approved by the FDA a month before I started treatment this spring. This also has it's share of side effects, the worst of which for me is Peripheral Neuropathy. That is a fancy way of saying it causes nerve damage in your hands and feet. Evidently it is worse if you get the Velcade through an IV, thus why my doctor has given it to me through an injection. I have not felt my feet in two months, they are constantly tingling with pins and needles like when you hit your funny bone, and the bottoms hurt when I walk as it irritates the nerve endings. It is also in my hands, though thankfully, not nearly as bad. The neuropathy is working hand in hand with the degenerative joint disease I already had in my spine to give me severe pain in my legs, so bad that I spent three days in the hospital last week on heavy duty pain killers. After two weeks of pain, when my legs went numb from the waste down, I couldn't stand it any more. We won't know if the neuropathy is permanent until I get into remission and they stop giving me the drugs.

The drugs used to fight the cancer are just the beginning. When I get home there is a mountain of drugs and supplements that I have to take to combat the treatment, like the anti-viral drug to keep the chemo from giving me Shingles. It has gotten so bad I have had to make up a chart where I write down the times I take each drug as some things can't be taken too close to other things. I feel like I have to order my life around that damn chart sometimes!

While these are all things you can see and understand, it is much harder to deal with the effects all of this has on your mental state and that of the people around you. My wife tries to stay positive and supportive, but I know inside she is hurting as well. With my business being so poor right now and my not being able to work enough to help with the bills much, all the financial burdens have fallen on her. I used to help around the house more, but now I feel so tired much of the time I can't get as much done. Half the time I can't even drive, so the errands I used to run now fall on her. Our 15 year old son doesn't show much emotion, so it is hard to tell what he is thinking or feeling. He is a really good kid though and is really helping out a lot with the things I used to do. The one I feel the worst for is my mother. Now in her mid 70's, she takes me to treatments and waits the three hours while the IV's slowly drip. I can't imagine what it is like for her to see her child go through this, not to mention when she gets home, she has to deal with my father who is slowly falling into dementia. At some point she won't be able to leave him alone.

As for me, sometimes I feel like I could just sit and cry for a few hours. I don't though as I am afraid if I start I won't be able to stop. So I try to put the cancer out of my mind and concentrate on something else. My emotions are always just below the surface, probably another side effect of the steroids, but I am sure there is quite a bit of depression involved as well. Frankly, it is pretty damn depressing knowing you probably aren't going to live to grow old and gray with your wife. I may not get to see my son marry and have kids of his own. I don't know how long I actually have to live, I guess none of us really know for sure. Much of the time I have left may be spent in doctors offices and hospitals or feeling too sick to do anything. I haven't come up with any great insights on life or living yet. I can only suggest you enjoy your time with famly and friends to the fullest. Make sure they know you love and appreciate them. Try to share whatever hard earned wisdom and life lessons you can with your kids while you have the chance. Most of all, keep living! Life with cancer really sucks, but I guess it is still better than the alternative!

Timm Smith
July 4, 2012