When people see me in person, as opposed to e-mail, phone, FaceBook or BlogPosts, they are usually astounded by how good I look. I don’t mean that I am drop-dead gorgeous. LOL! I mean they are surprised that I do not look like the typical cancer patient. I am not gaunt, with haunted eyes and thinning hair. I am usually vibrant and “fluffy”, okay “pudgy” and I have a full head of dark curly hair. And I am happy!
When people ask me how I am, I tell them. In most cases I am GREAT! And I tell them so. Again, they always look surprised. So, if I am looking great and feeling great, why am I not back to work or back to doing all the things I did before? Well…I will tell you.
My standards have been lowered. My normal or base-line is not what it once was. If I can attend a luncheon, or visit with a friend for a few hours, or go out for dinner and drinks…that is fantastic and I am feeling great. I can usually only do one of those things in the span of 24 or 48 hours though.
The maintenance chemo drug that I take has some significant side effects. The main one is fatigue. I am careful to plan out my “engagements” so that I have the energy to be bright-eyed and bushy-tailed for the duration of my involvement. I will nap before going out or I will make sure I get extra sleep or rest for a few days before and after an event. This way, when you see me, you see me at the top of my game. I am so happy to see and interact with people that I am genuinely on a high when you see me.
Recently I went to my hometown, Port Elgin, for the weekend. I was very busy and really needed to pace myself. My big adventure was Saturday night so I made sure that Friday was a quiet day, and I tried to grab some rest on Saturday. I was out with friends on Friday night, but drank water and had only one beer. By 10:00 I was DONE! I knew if I kept going I would regret it. On Saturday, I slept in until 10:30 and took it easy with my many visits that day. I did need a little power rest in the afternoon before dinner. :) I had a beer with my meal and then drank water and/or coke for the rest of the night. I made it until 11:00 but I hit the wall and needed to go home. It was a great day…but a long and very, very tiring one.
I also have some hidden issues. I have peripheral neuropathy in my feet. This is nerve damage caused by Velcade (one of the drugs I was on during my 4 months of pre-stem cell harvest chemotherapy). Each week when I went to the hospital for my shot, they would ask about the neuropathy. I would tell them I had tingling…but I did not tell the when it got worse. They would have either cut back or taken me off Velcade, and I did not want that. I also knew that the longer I had symptoms, the more likely it was that I was going to have irreversible damage. We opt for the lesser of the two evils…
Anyways, my neuropathy had advanced to a point beyond tingling in my feet. I had constant cold sensation, and then I had constant burning, then I had pain. Sharp needle, or hot poker pains in my feet and lower legs. This got worse after the stem cell transplant and then got better for a bit. Once I started on Revlimid, though it came back again. I take Lyrica for nerve pain, twice a day, and it addresses the pain during the day when I am busy. The bad pain generally hits at night, or when I sit and put my feet up to rest. I guess I could just keep moving around to stave it off, but that does not really help for any period of time. I tried medical marihuana, but I did not like the feeling of being stoned, so I resort to taking Percocet from time to time. (No I will not get addicted!)
I also still have chemo brain. I wrote a post on that topic previously, so go back and take a look…but the long and short of it is that I sometimes can’t remember things, or lose y train of thought mid sentence, or just can’t concentrate. Some of it may be menopause…or old age (I am almost 53 after all) but a lot of it is chemo brain. The little things I would forget before my treatments are nothing compared to what I face now. As an example, I call my mom almost every day. I don’t use speed dial, I actually dial the number. More than once I have started to call her and could not remember her phone number. I had to look it up. I cannot remember my own phone number sometimes. Other times I am in the middle of a conversation and suddenly have no idea what we are talking about or cannot remember the name of the person I am talking to. Many of these incidents happen without anyone knowing, or catching on. But if I seem stunned at times…I am. And it is not my fault!
The stem cell procedure and the Revlimid also affects your GI tract. I have IBS already and this is much worse. I get sharp stabbing cramps in my belly each day and have bouts of painful bathroom adventures. This side effect makes it difficult to leave the house for any length of time without knowing well in advance of where the washrooms are. I learned about a medication that could help and printed the info for my oncologist. He seemed sceptical – he said my GI troubles were not a medical priority since I was not losing weight and becoming malnourished – it was just an annoyance.(That made me annoyed...) He must have looked it up though, since the pharmacy called the next day to say they had a prescription for me. FYI...I took 1/3 of the prescribed dose and it worked immediately! I forgot to take it yesterday and I was in agony!
My doctor’s attitude was frustrating, but in my “seeking to understand” I realized that in his world, if it wasn’t life threatening, it wasn’t really that important to him. My cancer was under control and the side effects were simply the price one pays for that. My new “normal” was one where I take the shortest route and wear sensible shoes, sometimes need a 3 hour naps every day for a week solid, deal with uncomfortable toilet issues, or becoming confused and forgetful and looking stupid. :) In the grand scheme of things…it really is a small price to pay.
When you see me and I look bright and vibrant and alive…and I tell you I feel great…I really do. But a lot of preparation has gone into that moment so that I do. I know that I am not alone. Many of you have chronic pain issues, or depression, or other issues or ailments that impact you in ways that we cannot see. You hide it, and suck it up, and live with it, as I do.
Another reason to do what Ellen Degeneres says to do…”Be kind to one another”.
