Mike and Nicole
John and Mike
It's been a momentous week! Mike graduated from San Luis High yesterday, and we had a great party with 5 other graduates' families at the Bruington's lovely house. We congratulated each other many times on having gotten this far, and on how wonderful and talented our kids are, and on how the future is out there for them to grasp. Henry Bruington, younger brother of Annie who graduated and one of the theater gang, made movie trailers with each of the graduates that were really funny and well worth a peek. They are at http://vimeo.com/user1145284/videos/all/sort:newest. Mike is in a couple of them. Plaudits to Henry, a masterful job.
All of this smiling and potential and sweetness and melancholy started me to remembering when I graduated, but I don't recall anywhere near the depth or power of those emotions from that time. The fog of war has clouded over the emotions of 36 years ago; perhaps it was all there then as now, and we were full of promise and possibility. I'd like to think there still are a lot of possibilities, but it has been pointed out to me that most of those have been right in front of me for years and nothing has happened.
This state of sentient being, this state of knowing that we are travelling through time from birth to death, paralyzes us at times, analysis paralysis, with all the roads that lead from where we are and not able to see the end until the end. I would like to have a hovercraft instead of a car so I could look out a little further and take some easy shortcuts.
I went to see the doc this week, and the mucositis is advancing a lttle, effecting my eyes as it does Bill's with dryness. I keep having flakes of skin fall into my eyes at inopportune times, such as when driving through downtown SLO. I am like a shark, and my extra eyelid closes over and everything goes milky translucent. Not great for driving. My liver numbers are mixed, with some way up and some normalizing, which is typical 6-9 months after BMT.
The steroids continue to wake me up early, 5 this morning and most mornings, so I am getting by on 7 hours of sleep which is OK. I am a party pooper though, show me my bed by 10 pm please, maybe 11 if I am being wild. I actually had a drink last night, a margarita, it was good, I hope the liver didn't care, maybe it needs flushing. I do get lots of work done around the house, but things are breaking as fast as I fix them. Dana's work on the roses is really paying off, and I have done some trimming and feeding and potting, so the garden is looking very nice, except for the foolish young animals on fire in the background.
I am writing this with a new PC, as the motherboard died on the old one. Plugged in the old HD, and I have a new rocket machine, quad core CPU, 600 gb hard drive plus the old HD with 280 gb, 4 gb RAM, 350 GB of external HD, and I can still only type 30 words/minute and peek a lot. The weak link is me.
All of this smiling and potential and sweetness and melancholy started me to remembering when I graduated, but I don't recall anywhere near the depth or power of those emotions from that time. The fog of war has clouded over the emotions of 36 years ago; perhaps it was all there then as now, and we were full of promise and possibility. I'd like to think there still are a lot of possibilities, but it has been pointed out to me that most of those have been right in front of me for years and nothing has happened.
This state of sentient being, this state of knowing that we are travelling through time from birth to death, paralyzes us at times, analysis paralysis, with all the roads that lead from where we are and not able to see the end until the end. I would like to have a hovercraft instead of a car so I could look out a little further and take some easy shortcuts.
I went to see the doc this week, and the mucositis is advancing a lttle, effecting my eyes as it does Bill's with dryness. I keep having flakes of skin fall into my eyes at inopportune times, such as when driving through downtown SLO. I am like a shark, and my extra eyelid closes over and everything goes milky translucent. Not great for driving. My liver numbers are mixed, with some way up and some normalizing, which is typical 6-9 months after BMT.
The steroids continue to wake me up early, 5 this morning and most mornings, so I am getting by on 7 hours of sleep which is OK. I am a party pooper though, show me my bed by 10 pm please, maybe 11 if I am being wild. I actually had a drink last night, a margarita, it was good, I hope the liver didn't care, maybe it needs flushing. I do get lots of work done around the house, but things are breaking as fast as I fix them. Dana's work on the roses is really paying off, and I have done some trimming and feeding and potting, so the garden is looking very nice, except for the foolish young animals on fire in the background.
I am writing this with a new PC, as the motherboard died on the old one. Plugged in the old HD, and I have a new rocket machine, quad core CPU, 600 gb hard drive plus the old HD with 280 gb, 4 gb RAM, 350 GB of external HD, and I can still only type 30 words/minute and peek a lot. The weak link is me.
In some of my early morning ramblings to myself I have been trying to wrap my arms around what the past was like for people such as my dad and his generation. I see so much different for my kids than it was for me, a whole new world of distractions plus all the old ones, and nowhere near the work ethic that was drilled into my generation by depression-era parents. I ended up on the phone with my Mom prying her for information I should have gathered twenty years ago. Her memory is great, but the people I should have asked for more details of their life are gone now, rest their souls.
So I am embarking on a genealogy project to see what is out there. Bill McNiff, do you know of any family tree work out there? Does anyone have any advice of software or sites to use?
So I am embarking on a genealogy project to see what is out there. Bill McNiff, do you know of any family tree work out there? Does anyone have any advice of software or sites to use?
John, despite the fact that gvhd is f*#king pain in the neck, my docs at Dana Farber have repeatedly told that gvhd kills leukemia cells. So any lurking remenants of luekemia cells are knocked off by the gvhd. That is the ultimate goal. My eyes started going bad in Nov 08 I have had some improvement the past few weeks June 09 so about 8 months of gvhd. The drug lotomax a mild steroid was helpful but only at a dose of 4 times per day. I also have two plugs in the tear ducts I may get 2 more to keep the moisture trapped in the eyes as I do not produce much in the way tears. I seem to always have elevated bun, so I stay on prednisone and cellcept, The day I get off the these drugs will be a big day for me!
ReplyDeleteBe careful of eye drops that have preservatives in them the constant use can be harmful.
Restasis burns my eyes to the point I cannot use it. I laugh at the commercial with the beautiful optomotrist mentions a slight burning sensation as a side effect. Yeah right!
As far as family tree history is concerned, John Joe Mcniff of warwick R.I. would most likely have done some family research into our past. His brother Tommy died in 1980 of lymphoma. Oddly, I have not heard a single word from him since my leukemia started in feb 05. Not one call, a card, nothing. I do not know what is up with him, but I will contact him If you want to start looking into the family history.
With all this time on my hands I have also been questioning what I have done with my life,it can be somewhat overwhelming at times, as 5 years have past since this illness started. I could have taken many paths, which was the best, I can only guess. Let me know if you want me to get in touch with John Joe Mcniff? Bill
John,
ReplyDeleteCongrats to Mike on his graduation.
The rose garden looks very cool, foolish young animals included.
Any more thoughts on playing nine holes or skimming the water on a 2X4?
Yer too hard on yerself buddy.
Hey, shot in the 70s twice over the past two weeks. Felt pretty good for a 60 year old fart.
Keep a goin John.
Mac
John
ReplyDeleteJust had a second set of tear drainage ducts plugged. Now the tears you produce cannot drain out of the eyes. My dry eye gvhd seems to have improved overnight. Just for your information. Bill