February 28, 2012

Roid Rage

Note: I wrote the following on Sunday the 26th at the same time I wrote the last post.  Just as the wind blows my mood is different.  It is Tuesday night, I am exhausted. 

Personally, I am going through a phase of anger and depression that is for me, in many ways unprecidented.  My whole life has been about adventure and putting myself in situations that take intese mental and physical focus in order to come out safely.  In the old days, before cancer, If the river was too low to paddle, the weather was too rainy to ride, the snow was to thin to snow board or the surf was too low to bother, I would experience a sort of depression.  A tensing of the facial muscles, a shortness of attitude, and a longing for better times.  When I was able to get out and play, run rapids, descend hills at high speed or something like that, my attitude was visibly more enthusiastic, calm and friendly.
In 2008 during the intense first year of treatment for multiple myeloma, I was able to mostly put that aspect of myself away.  Not easily, I was able to tell myself that I had the most intense battle of my life to fight and that in a year, I would be cancer free and back to my old self.  All I had to do was keep my attitude good, my head in the fight, endure intense suffering and remain in a place of gratitude and I would come out OK in the end.  In hindsight, it was exactly the right thing to do.  I nearly died that year on at least one occasion and I credit much of my survival with the attiude I was able to cultivate.
Unfortunatley I was out of neccsity, I was deluding myself.  Multiple Myeloma does not go away.  It is a blood disorder,  necessary cells in your blood grow haywire and cause problems.  You can't survive without those cells.  The best you can hope for is to have them at a "normal" level and to have no symtoms.  I achieved that, for two years.  Now I am taking chemo drugs to keep those cells normal. 
In all likelyhood, that is what I will keep doing for the rest of my life.  The outlook is not great.  Between what has already been done to my body and the drugs I take to stay normal, my immunity is depressed, my body's abilty to recover is severly limited. 
In 2008 when I made that commitment to go back to my "old self" was sadly impossible.  I will never be that guy again-- physically.  Mentally, I struggle more and more as the months years go by and my treatments take up more of my energy and time.  I am relegated to walking the dog on a 3/4 mile concrete loop with the senior citizens when I am able.  I go skateboarding for a half hour when I feel a little bit better a photography hike when I feel good, and kayaking when I feel great.  In my mind much of the time I am still the guy that is able to paddle all day everyday or ride 50 miles before 10AM.  Gone are the days where I can manage my attitude by doing what I call "getting out." 
I have been able to replace my adventureous yearnings with other activities; playing the guitar, gardening, working on cars, doing art.  Still it is not the same.  None of this demands the extreme meantal focus that shuts out all other aspects of life to the point of meditation where there is nothing but you and the task at hand.  That feeling that when I get to be in it leaves me relaxed, elated and with a sense of well being that is unparraleled. 
The last few months have been a process of realizing that I can no longer structure my life in pursuit of those moments. Not to say I wont get them, I just can't count on them to keep me sane.  I have to find a new way of doing it.  I morun the loss.  I try hard to go on with out them but I feel like I am living in a greatly diminished world.
Thanks for reading.

February 26, 2012

February: a month to forget

Whoa it has been a rough month.  It started with a blissed out day of warm January kayaking on the 29th of January.  I went with my dear friends Patso, Tim, Terry, Matt and Girl Alex.  I was feeling great and at the just at the beginning of a 3 week half-strength chemo round.  It was sunny beautiful, I paddled a boat I hard never tried and was loving it.  Things felt like they couldn't be better.  That didn't last. 

That evening I started having flu symptoms and proceeded to be sick with fever, cough, sore throat, congestion, vomiting, fever, you name it, for the next two weeks.  While I was sick both girls were down with the bug as well, alternating days home from school and needing attention.  To top that off, the Chickenhawk, after 6 weeks of no work started back at CODS full time.  We need the money so she despite her mothering instincts ovaried up and worked rather than staying home and nursing her brood. 
The good news was that during that time I was never admitted to the hospital, I only went to the ER once for fluids and stabilizing of my fever.  For a guy with lowered immunity, that is huge. 
The bad news, at the end of two weeks of streaming netflix, lots of fluids and anti-nausea meds, the couch time had taken a toll on my body.  When I got up and started moving around my back was spasmed to the max.  Back to the couch, a wonderful massage from my dear friend Heather Freer, and I was still in pain.  A trip to Kaiser for muscle relaxers and another few days on my back, a trip to the chiropractor and here we are at the end of the month and I am just starting to function again. 
My body feels as decondtioned as it has in 3 years since the transplant recovery.  My blood pressure is low so the simple act of walking can make me dizzy.  I have very low aerobic capacity and my back still hurts when I stand for more than 15 minutes.  On top of all this I experience extreme fatigue.  Tori Robinson described it as wearing a lead suit all the time.  I think it is like living in an atmosphere of peanut butter rather than an oxygen mixture.  It is just really hard to move around or get any normal task done.
Last weekend the girls went skiing.  They had a great time except Dana was hit by not one but three snowboarders.  I think it might have been the target she was wearing on her back.  Anyway one of the collisions resulted in a bruised knee and now she is back on her crutches and hopping around the house.  This is a condition that puts stress on the whole family.  Xrays say no break. Dana says she is in pain and refuses to put weight on her leg, the doc says wait two weeks. 
You may notice that my tone in writing this is (I'd like to think) uncharacteristically negative. Well yes, yes it is.  I took a break from Revlmid and Dex for a week or so while I was sick, now I am back on.  Due to the side effects of the Dexamethasone I am experiencing what I can best describe as roid rage.  The Rev / Dex therapy includes a high dose of the steroid once a week.  Side effects include sleeplessness, manic behavior, and yes, a really awful attitude.  My internal conversation is appalling, I am unkind to myself and extremely judgemental of anyone that gets close.  I am downright mean to my kids and often disrespectful to my wife.  The best way to describe it is to say that I can hardly stand to be around myself. For 24 hours a day 3 days a week,  I am the guy at the party that I would attempt to avoid.  The good news is that the fatigue is gone for the three days I take the Dex. The bad news is on Tuesday, when the dex goes out of my system, I will experience extreme fatigue that will slowly improve until it is time to start the cycle all over again.
This month has been quite hard on our family.  It has gotten to the point where the chickenhawk and I have started talking about our options; Different treatments for me. No treatment for me. Her stopping working so that she can run the family and house and care take while I do treatment, and the question of what do we do for money if she does that.  For now we have decided that we are just adapting to yet another "new normal."  For now we'll  just tough it out and hope for better health for all.  Better numbers in my monthly testing and overall good fortune. 
I try hard to stay in a place and attitude of gratitude.  It has been particularly challenging lately, nonetheless, I'd like to thank Mary Smith, Terry Anderson, Dave Pope, Traci Sheehan, Margrit Petrovsky, Hillary Mulligan, and Kay Osborne for the fabulous meals.  Also thanks to Jen Calvin, Tim Madden, Dave Pope, Julie Stanley, Kary Danielson, Dennis Eagan, and Kenna Foster for both dropping by and spreading good cheer as well as running the occasional errand.  Also, last but not least thanks to Tommy Anderson for installing a new toilet when our ancient master bath commode stopped working.  The spirit and and attitude of our community never stops amazing me even in the depths of a cold miserable February it is as though a warm light is shining on us.  Thanks to all for helping with the burden we have to bear.
Thanks for reading.