A clown friend wrote to tell me that when a family member had cancer that it was a roller coaster at times over the several years of the fight. I was doing pretty good since the diagnosis. The pain and the medication are something that takes a bit of getting used to, however. I injured my back several years ago and had two operations and a lot of pain. I complained to my doctor at one time that the medication was so strong that I didn't feel like doing anything except sleep. He said "I want you flat on your back for awhile." And, then when I was able to try to go back to work or school or just resume normal activities, they loaded me up with a lot of medication. I had muscle spasms so they gave me a muscle relaxer. That unmasked the bone pain so they gave me some stronger pain medication. In turn, nerve pain was unmasked and they prescribed further medication. I would go to the pharmacy and they would give me 3 medications and a bottle of Malox for indigestion. "That medication will irritate your stomach," confided the pharmacist. Well, as soon as I was able, I weaned myself from all of the medication and then relied on aspirin or tylenol every now and again for severe pain. I also started seeing a chiropractor which helped immensely. The chiro would ask me what pain level I was in--from 1 to 10---with 10 being the most pain. I was usually a 9 going in. After treatment,I would be a 3 or 4 for a week or so. It finally got to a point that I was actually tolerating a pain level of about 6, so when he asked me what the level was, if it was severe, I felt like saying 3 or 4 (added to the 6 I was tolerating). That only served to confuse him though.
I have not been taking medication for years except for an occasional tylenol. Now that they have prescribed me something stronger I balked at first. I would take it every 6 hours and a lot of times I would try to go 10 or 12 hours between doses. The pain began to get worse. I was told by the doctor and several experienced friends that you need to stay on top of the medication and pain. I went back to a regular schedule but noticed that I would wake up several times during the night with a lot of pain. So, I would take one a couple of hours before bed and then another when I went to bed and that would assure me 5-6 hours of sleep. The pain has been getting worse though because the neck mass has gotten a lot harder and it gives me a stiff neck and soreness and my shoulder and arm hurt a lot sooner. I was taking a dose about every 3-4 hours and napping in between or going for walks. I wasn't having much of a life...this was just in the last week. So yesterday I took a dose and then after 4 hours I took a tylenol. Then in 4 more hours another tylenol and then a dose of the regular medication. It helped but I had significant pain. I will continue to augment the regular medication with just tylenol and walks and see what happens and then talk to my oncologist next week. I don't like pain, but I would rather tolerate the pain if I can still function and get some things done .
I guess this is part of the roller coaster. I am going in for a biopsy in a couple of hours, It is done under general anesthetic because they want a significant tissue sample to see what chemotherapy they can use. The last biopsy I had was just a local needle biopsy and really flared-up the pain and swelling. I hope this one doesn't do the same.
Tonite is a clown alley meeting and I really want to go, but I'll have to see how I am feeling. We have a really great Clown Alley and this is the first meeting of 2012 with new officers ! Here is the famous website for the alley:
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