2011.06.15 Shortness of Breath

Today I experienced a new symptom: shortness of breath. We were concerned about this so my wife called our Hospice nurse. The nurse told me to take some liquid Oxy and that seemed to help. She also ordered some oxygen to be delivered to the house and came by to check on me. She couldn't find any specific reason for my difficulty in breathing.

My mobility and coordination seem to be a little more off. Perhaps I'm just more tired.

2011.05.30 Hospice

We have stopped Avastin therapy and are focusing on hospice care. Avastin is something to extend one's condititon. The big question is what quality of life am I extending? Chemotherapy isn't helping anything, My vision and physical coordination keep deteriorating. The left side of my body is almost useless. It is all about comfort care right now. I have been able to keep the pain under control. My faith and the love & support of family, friends, and fellow churchgoers keeeps any depression away. I know that the end of this mortality is not actually the end of my existence.

2011.05.20 Life As A Cat

This must be how a cat feels. I need to rest/sleep at least as much as I am awake each day. The steroid dose I am on helps greatly with the headaches. I still have headaches, usually daily though.

I love being off chemotherapy. At least I can't blame myself for getting sick. It is nice to know I am not causing any of my fatigue either, like when I used to take thalidomide. Here are a list of all of my current problems: partial paralysis of the left side of my body, loss of almost all of my left visual field, impairment of my coordination so I can't walk well, button my pants or shirts without help, general vision problems (blurry and sometimes double vision).

I am grateful I am able to be home with my family right now instead of in some care home.

2011.05.09 Working From Home

The fatigue and more painful headaches have made it so that I am trying to do what work I can from home. I also have daily problems with my vision and physical coordination. I wish I could help my wife more with work around the house and running errands. It has been wonderful to have so many of my coworkers bringing us meals to help out.

2011.04.27 Fatigue & Minor Headaches

I have been trying to work full-time. My employer initially questioned the wisdom of my attempts to do so, but I want things to be as normal as possible for as long as possible, and, I like my job.

Unfortunately, I just couldn't last the day this week. I have had to go home early everyday this week and have had minor headaches yesterday & today.

2011.04.19 The Beginning of the End

Ijust returned from a 10-day trip to Europe where my wife & I celebrated being married for ten years. The trip started off well, but my health deteriorated rapidly. I no longer have full control of the left side of my body. Vision & coordination are impaired. I have to hunt & peck with my right hand now to type. Had an MRI today and the doctor expects the symptoms to only get worse. You know it is bad when the conversation is about you and hospice care is mentioned.

2011.03.03 Stable & Unchanged

I had a MRI scan this morning and when the doctor, my wife, and I viewed it, everything was the same. When everything stays the same when checking on a highly malignant tumor, that is a good thing. I am still hoping for tumor regression some day.

I had a hard round of chemo, using Irinotecan and Avastin. My health insurance is giving my doctor and I problems covering treatment with those drugs. We're trying to solve the problem.