News from Auburn Fri Aug 22 2008


For new readers
I've added a few new readers.  For the "backstory" of this year you can read "For those who are just tuning in" on my blog.
http://homepage.mac.com/hodelas/tar/C1106845964/E20080316210252/index.html

I apologize, but this week's newsletter is boring again.  In fact, I've gotten so used to the radiation treatment/mask that I told the radiation techs that one of these days they'll take off the mask and I'll be asleep on the table.  With that level of excitement going on it's tough to maintain my standards of writing.  I hope you enjoy this issue.

Cancer update:
I am nearly done with radiation treatment.  I go Mon-Wed this week and then that's done.  The side effects started showing up last week (sore esophagus, some discoloration in my skin), but for the most part I'm doing ok.  I can no longer inhale my food, however: small sips, thorough chewing, just like mom used to tell us when we were little, is essential.

One interesting bit of cancer news is this: I had thought that radiation was the "last curative option."  Apparently they're still looking at doing a bone marrow transplant later this year.  That will involve a significant amount of time in Birmingham where I will need a caretaker 24 hours per day for up to 100 days.  I'll write more about that when we get the details.  Dr. Forero is very determined to get me well.  He told me that the extremely high chemotherapy doses that are associated with a bone marrow transplant have been seen to overcome "resistant" tumors such as as mine.  Don't ask me the odds on survival, etc.  They told me what they are, but my case is so out of the norm that I don't think any statistics are actually relevant.  I plan to get better.  We'll see what Christ has in mind when we get there.

I learned from another bone marrow transplant patient that, after the transplant, I will have to have all of my childhood shots again.  It's a complete reset of the immune system!

Life at Hope Lodge
My sister Kathy stayed with me the last half of this week so that Viva could work at the hospital.  Kathy hadn't met Dr. Forero, the primary oncologist treating me here.  The nurses warned me a month or so ago that one day he'd kiss me on the cheek.  Wednesday he and I were about 2 inches a part, nose to nose, as he told  me, "I am not giving up on you!  You can count on it!"  He gets upset with us when we get discouraged.  That in itself is encouraging to us.  Then he gave me a big hug - no kiss yet.  Dr. Forero is great!  (Frankly, I am impressed with everyone at the UAB oncology groups, and I've told them so.  For that matter, the oncologists in Auburn/Opelika are great too.  I've been fortunate and I enjoy bragging about everyone involved in my treatment.)

We transferred last week to the American Cancer Society Hope Lodge in Birmingham, a very nice facility where there are many other cancer patients (33 families).  One of the patients there now is a half-Indian former prosecutor, Jerry,  who's retired to Alabama.  (The cost of living here is very low!)  He found out that Kathy and I have science/engineering backgrounds, and loves throwing questions at Kathy and I about algorithms, dark matter, and other science stuff he sees on PBS.  He's had a few stories about his life as a prosecutor too - one of these really calm, quiet guys who talks about death threats as if they were a normal part of life.  Wow.  We met another family there (Phil and Susie) who almost instantly felt like friends we'd known for years.  They were wonderful for conversation, support, laughs, etc.  Phil has esophageal cancer, so those of you who are praying for me may want to include him in your prayers also. 

The odd experience at Hope Lodge is that, while everyone has the 800 pound gorilla of cancer in their minds, we're all adapting to living "one day at a time," and so the experience there is actually very positive.  Monday through Thursday various volunteer groups bring in meals and visit with us, and on the weekends most people go home (except for the bone marrow transplant people).  I'm glad to be home for the weekend from "Cancer Camp," though.  A little quasi-normal life is good.

Wheelchairs and independence
Because my tumor makes me very tired, I've been in a wheelchair for awhile to conserve strength.  That's kind of made me a visible patient at the Hope Lodge.  Kathy suggested that my symptoms of extreme fatigue are unusual and that's "freaking out" the other patients.  "Freaking out" means that lots of people come to talk to us and are very encouraging, especially when they see my color and strength slowly growing.  No cough (well, hardly any) this week, which is really nice.  I haven't thrown up for more than a week and a half.  Mmmm.  Nice.

I got a new wheelchair this week!  Apparently nursing homes collect large numbers of discarded chairs and eventually give them to someone else to dispose.  Our shuttle bus driver heard that I wanted to be a bit more independent, so he went to a nursing home and got me a chair with big wheels  that I could use to pilot myself around when my legs get too tired to walk. It's great!  It's a bit heavier than the one a friend lent me, but the additional freedom is well worth it.  I'm looking forward to getting strong enough to ditch the chair entirely and then give it to someone else who needs one.  (I actually walked the length of my hallway this morning, so the energy level is improving!)

After Wednesday morning I had no major appointments or errands to do, so with the adrenaline gone I proceeded to sleep almost constantly until this morning.  "At 4:21 a.m." my sister informed me.  I thought my typing was quiet, but apparently not.  She's milking this for all its worth!

Kayla and Adam started classes this week, so I only get to see them on the weekends.  I am looking forward to the end of radiation treatment so that I can get some more family time.

Last Sunday I spoke to our church youth group (about 100 kids) about my cancer experience and its connection with my faith.  I posted the presentation to my blog.  Viva videotaped the presentation, so once I get some time at home I'll post it to YouTube in bite-sized chunks.  For now, you can see the presentation here.  (http://homepage.mac.com/hodelas/tar/C1375517084/E20080817141500/index.html)

Parting words
I've been receiving cards, emails, etc. from many of you.  I sometimes forget to write back to say "thanks!"  I cannot tell you how much these cards mean to us - thank you thank you!

Posted: Fri - August 22, 2008 at 06:51 PM           | |

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