Thursday, April 26, 2007

Three words

I wrote three very powerful words a few days ago. They shocked me. They caused a few moments of introspection. They hurt.

It may seem odd that these three simple words moved me, but the truth is I don't think I've ever said them before. Sure, I've used metaphors and synonyms. I've used descriptive and technical terms. But all these phrases are simple decoys to move conversation along and protect people (mostly myself) from the simple truth.

I have cancer.

There, I said it again. It's official. I have cancer. Me. I'm not living in denial any more. (Hell, I didn't realize I was in denial until about halfway through writing this.)


I got a scrip from my doc for Desonide cream. It's a corticosteroid ointment that has already cleared up the itching and flaking. My skin appears to be recovering nicely.

I sorta worry about the warning from the doc and the pharmacist that said "Use sparingly!" What will the side effects be?

Monday, April 23, 2007


Ok, so I was in remission until I went in for surgery. Two months on chemo and I'm virtually in remission again. My numbers are so close to normal that I could probably retest next week and be on the mark. I'm gonna see my oncologist on Friday. I'll need scheduling answers on my change in chemo for stem cell creation and harvest, then insertion of the port to my chest for the harvest. The fun part is that I need to complete these things before I lose coverage with my employer. Scheduling becomes critical.

The thing I'm frustrated by is my relatively new skin condition. Sahara-esque would be an understatement. Half my face, head, and neck is red from peeling off. The other half is coming off in 1/8 inch flakes. Moisturizing only glues the flakes to my face. They seem to continue to develop underneath the layer of moisturizer. I'm using moisturizers that contain no alcohol and my face still burns when I put the stuff on.

In any case, my face either itches or burns constantly....... Yeah, I know this is a relatively minor issue when compared with some of the other stuff I've posted, but damn, when are the new side effects going to stop showing up? It's not like I give one up and get a new one. They're all still here.

Sunday, April 22, 2007

The weekly report.

It's Sunday morning and I'm feeling pretty average today. There's still a problem with my skin falling off my head and face, and my tinea cruris (look it up) is irritating. Basically, it looks like my skin is suffering some long term effects of the treatment.

As far as the skin is concerned, it makes for a very 'red' countenance as thin/bare spots are exposed. My skin was actually getting better last week when I was shaving every day. Now that I'm not again, the flakiness is returning. I'll start shaving again tomorrow and see what the result is.

I had blood tests done on Thursday of last week. Unfortunately the lab is a bit slow this week so I don't have full results for today's blog. I'll keep you posted.

Monday, April 16, 2007


My life is establishing a new NORMal. It's not the same as it once was, but the new life is my normal life. Steroids make me crazy. Thalidomide makes me stoned and stupid. Boredom makes me eat.

Physically, I'm doing decently. The surgery is healing / has healed acceptably. My insides seem to work again. I can generally eat almost anything I feel like eating. Muscle tone is returning gradually and I'm gaining some strength and endurance.

I just wish I could do something about my brain. Excitable stoners are hard to deal with and virtually impossible to employ. I don't know how Ed does it.

Saturday, April 07, 2007

Weekly update

Yeah, it's been a week again. I guess that means this whole thing is beginning to be an integral part of regular life.

The stomach surgery has obviously worked fairly well. My weight is back up to about 160, which is 20# more than my post-surgical weight. Some of the weight is even in my arms and legs because of a mild exercise program I've put myself on. I'm still getting torso fat, but my face is filling out normally and I look less like a beetle than I did some time ago.

Chemo loads are half of what they were during the initial phases. Five 4 mg pills now instead of ten. I'm still a hyperemotional mess, but I don't buzz nearly as much as I once did. Poor control of finer muscle movements is still common. I drop stuff a lot if I try to carry several items at a time. Hiccups have returned during chemo loading. Mostly that comes from eating like a pig. I do that when I'm bored.

In any case, I feel physically pretty good. Emotionally, I'm a complete useless mess.

I'll survive.

Sunday, April 01, 2007


I came to the realization this afternoon that I'm getting used to having the Big C. It's finally become a part of me. One of little accord. Sorta like having a big nose, joints that don't work from racing, or pains of old age. They're there and I have to live with them. The Big C is there and I have to live with it. C'est la vie.

Interesting stuff

Ok, so we saw the oncologist on Friday. Seems my numbers are down based on my improving intestinal situation and serious application of Thalidomide that makes me stumble, stagger, sleep forever, and gives me dry skin and a rash so bad it appears to snow when I walk. Love the stuff. NOT!

Anyway, the surgeon blessed me to get steroids again. This time I'm only doing half the dose I was doing before. 20 mg per day on the previously established schedule. Dunno what the diff is between the 40 mg and the 20 mg, because either dose makes me an emotional mess. As Ed mentioned to the doctor, a single pill moves me 80 miles, but 10 of them only moves me 100 miles. Anyway, I'm calling the Pope about Ed's sainthood.

Now, here's the fun stuff. I got a letter from my boss about my job at GHC. Seems that due to my indeterminate return date, she has decided to reduce me to TPT (temporary part time). Basically that means I lose all my health benefits at the end of April. I won't make any comments about self-serving divisiveness, but some things should be obvious.

Ed and I went to my office to turn in my laptop, cell phone, and badge. We cleaned out my office and I wandered over to the other building to talk to the 'job center' people. They directed me to personnel via telephone and I apparently set a small avalanche in motion. See, it appears that my application for LTD has headed off my boss's end-around. Apparently they can't (or won't) reduce my status while the application is still pending, and personnel sorta suggested that "undergoing treatment for incurable cancer" might qualify me for LTD. A small part of me wanted to put my stuff back in my office and get my gear back.

Regardless, the current treatment plan calls for me to get my blood numbers back into the zone of excellence again so we can start harvesting stem cells. If I'm on LTD, I'll get the autologous transplant during that time. If the LTD application is denied and I have to go back to work, they'll freeze the cells and I'll get the transplant when it's convenient. Either way works for me, but the latter means fairly continuous chemo treatments until the transplant. Not fun, but then very little of this is.