Apology - Update - Thanks - Remembrance

I guess I need to apologize to extended family and friends. Since I have not posted since January 30th, folks are beginning to think something is wrong. I have gotten several emails and even phone calls checking on me – thanks! But I want to assure everyone I am doing great. I just didn't feel there was any real news to add and perhaps I was just a little lazy too.

I haven’t had any real nausea for the last two weeks. I started to slightly feel it a couple of times this past week, but took an anti-nausea pill and it went away. I have had slight trouble on the other end, if you know what I mean, but not bad. I have been more tired beginning last Wednesday, with a couple of embarrassing moments. I go into work at 7 a.m. and on Wednesday I was asleep in my chair when my team lead came in a little after 8. I think she was amused. Then Thursday, I fell asleep in front of my computer at work. I figure I was asleep for about an hour with the mouse in my hand. Since we moved last summer, we now work in cubicles instead of offices, so several people noticed but did not bother waking me. One of my co-workers offered me a neck pillow for the next time I fell asleep…sigh. I am thankful that they are all a great group and more than understanding of my situation. The last several nights at home I have fallen asleep on the couch, very early. Cheryl and my Mom just go to bed when it is time and they leave me sleeping peacefully. I usually wake up about one or two a.m. and then move to the bed. I guess this is to be expected as my blood counts drop. I still feel real good when I am awake!

I start round two of chemo tomorrow. This time will be different as tomorrow I will get both drugs instead of spreading it out over two days. I am not sure how long it is supposed to take. I will have blood work first and then see Dr. Netaji before beginning the infusions. The technician wasn’t sure if I start the Prednisone tomorrow, so he told me to bring the pills with me and the doctor will let me know if I need to take them before we begin. Cheryl will be with me too.

I got a very special present on Friday. Last post I told you I had ordered some blue wrist bands from David E. On Friday the package arrived. David and his wife, Mary, sent WAY more than I ordered, but also included a hat from his golf tournament last year that has the “Faith, Love, Hope, Win” logo on it; a yellow bandana from Lance Armstrong (one he sent to David when David wrote to him – they can’t be purchased!); a special prayer card; a book of inspirational writings titled, “Hope” that they inscribed to me; and a very nice card with a wonderful personal message. The bandana has the Lance Armstrong Foundation logo, LIVESTRONG, on it with the motto, “Knowledge is Power. Unity is Strength. Attitude is Everything.” repeatedly written around it three times in ever increasing type size. I guess you would just have to see it, but it is special. I had to go to Ft. Hood on Friday to get medications refilled and medications for next week. When I got back that night, I went to the computer and used David’s address to find his phone number. I was planning to surprise him with a phone call when we got back from my grandson’s basketball game on Saturday morning. Well, David surprised me and called me just before we left to go to the game! (He was also getting ready to go to his son’s basketball game.) He and his wife were worried because I had not posted here and they wanted to know how I was doing. I told you he was a special person, and now I know his wife is too! Of course I should have known that because David had bragged on Mary several times on his blog. It amazes me the connections I have made with so many people who were strangers to me less than a year ago. However, I have felt a special connection, which I can’t fully explain, with David E.

I have also corresponded with many members over on ACOR and we have encouraged each other. We also lost two long time members this past week. One, David Covell, was a true inspiration to the entire list and me personally. David was diagnosed with CLL in 1997, at the age of 43. The outpouring of grief, memorials, and messages of sympathy to his wife were amazing. David Covell was so honest in his posts of his struggles and then told us of the time last year that he had accepted the fact that there would be no more treatments. He was at peace with that. He told us of his decisions and kept us informed on when he would decide to go on hospice care. He finally decided it was time to accept hospice care on January 1st of this year. He was one of the bravest people and had an upbeat attitude to the end. He was a musician and photographer. On July 30, 2005, he had a very special experience and I am going to use part of his post to explain it:

“I'm posting this from a motel room in Carlsbad, NM. Tomorrow morning at opening time, i.e. 8:30AM, I will get to fulfill a dream I've had for 30+ years, to play guitar in Carlsbad Cavern. I obtained special permission from the park service this afternoon and they're actually going to let me do it. …I didn't even have to play the terminal-cancer card, although I would have if necessary. What the hey, this is almost certainly my last chance to do this, and I am definitely dying, so why not?”

Then, after playing, he wrote this:

“I took a lot of photos inside Carlsbad, and also recorded two songs 750 feet underground in the most scenic place I've ever played. I came home all excited about sharing with the list…”

“I have played in caves before, but none had the sheer size and astonishing beauty of Carlsbad. I obtained special permission from the park service to take my guitar and a portable digital recorder into the cave. I was the first one into the cave that morning, and was able to avoid the crowds of people who came later in the day. I made a beeline to a remote place in the cave, and I had it all to myself for 45 minutes. The recorder was carried in a waist pack, leaving my hands free to play as I walked through the cave. I choose a particularly impressive spot to sit and play, and to record two songs. It was quite inspiring. Since its 56 degrees and 100% humidity in the cave, my fingers were cold and clammy and it was somewhat hard to play. The recording has some mistakes, but hopefully it communicates the mood and feeling that comes from being 750 feet underground, alone, and looking at formations which have taken millions of years to reach their current size. Truly an awesome experience, which I feel blessed to have been allowed to do.”

David Covell suffered through over 100 doses of chemo, radiation treatments, a bone marrow transplant, three clinical trials, at least three relapses, multiple episodes of shingles and other nasty things. Yet he knew how to live and see the beauty around him. He also knew how to die with dignity and bravery. He died a week ago today. He will be missed. I pray for his widow, Rena.

Well, I must get to bed to get ready for tomorrow. I WILL post by Tuesday night to let you know how it went. Again, thanks for your prayers. They are effective!