This is only a test

Health update:  It's not mumps.  The blood tests came back and that's about all they could tell me.  The face swelling was either a very fast reacting virus or more likely an allergy to something.

Doctors keep asking me about which allergies I may have.  I tell them that I have no idea.  My immune system is less than seven months old.  I started over on November 6th with new bone marrow, new blood and a new immune system.  It's anybodies guess at this point.  The tests this week included a swab to check for viruses, a pulmonary function test and a chest CT scan.  Sometimes I think doctors look at the dozens of pokes, prods and tests I've taken and say,  "It's been a while since we've done this one.  Let's do it again."

I'm pretty sure I've been tested for everything at least five times.  The bad news is the tests always come up negative so they don't really know what's wrong with me.  On the 6th, I'll spend a day at my old stomping grounds at the SCCA.  They have scheduled several appointments for, guess what...more testing!

Smaller Face

The previous blog stirred up some concern.  Sorry about that.  I mentioned I was laying in a hospital bed but I'm not checked into the hospital.  I was in the emergency room.

So today, the Seattle Cancer Care Alliance was also worked up about my balloon face from Saturday and Sunday.  They gave me two bottles of antibiotics but they have no idea what's going on.  It doesn't matter at this point.  Other than a huge, sagging double chin that wobbles when I turn my head, my face is looking more normal each day.  

Each day is a mystery.

Mumps??

One doctor thinks I have mumps!  Another says its a viral infection that looks like mumps. A blood test will give us the final answer. 

Either way, I'm laying in a hospital bed and my face looks like I stuffed a corn cobb in each cheek.  What's next? Measles?

Ups and Downs

The last day of work is today.  The student last day was yesterday.  I just realized that I made it!  I told the doctors that going back to work was the right thing for me, that my students would help to make it work.  They did and I'm better off for it.  

The last blog was full of darkness. As with most medical procedures, I assumed the recovery period would show steady improvement each day.  I didn’t expect the reality of so many high and lows followed by more high and lows.  I wasn’t ready for the challenge of having my intentional optimism crushed over and over by continued setbacks and disappointments.  It seems that each time the treatments are going well, something would go wrong.

There are still times when I feel like I stand at the edge of a bottomless pit of misery and stare into the blackness.  The pit didn’t just contain possible death.  It represents a near complete loss of hope along with the constant agony of pain and symptoms too numerous to mention.  The constant bombardment of sickness for so many previous months and then again months after arriving in Alaska, feels like weights pulling me toward that pit of darkness.  It is difficult to resist falling, to simply give up and become a victim.

The only rule I live by throughout this ordeal is to not give in. I haven't given up hope though at times I wonder if that would be easier. I have the deepest heartfelt sympathy for the poor souls who have fallen. They're were all around me at the SCCA. They served as a reminder that strength and a resolve to find complete health was my right.  Cancer would never take that from me.  That resolve gave me strength and more strength gave me that resolve.

Regardless of the poor prognosis of my current condition, I have found a way out and a path toward health. I can say with certainty, the GVHD and it's effect on my lungs will not reduce my optimism and will not take my fighting spirit. It's a new challenge to get through, that's all.

Darkness again

During my stay at the Seattle Cancer Care Alliance, I made an assumption.  I thought that when I left Seattle, my days of sickness would taper and complete health would gradually return.  Performing with the symphony in March and going back to work full time at the high school showed a resolve to be healthy but it's not quite working out that way.  While I was a patient at the SCCA, there were so many positive moments, usually followed by sickness and sometimes despair.  Three months later, little has changed.

I was wrong about my hope and belief that the end of day to day treatment meant I was basically done with sickness and occasional misery.  GVHD or Graft versus Host Disease is hitting my body with a vengeance right now.  I was warned repeatedly that GVHD can have a harsh and sometimes devastating effect but they didn't say it could build this late in the game.  I'm different from the normal patient (again).  I don't have the typical skin, eye, liver or GI problems.  I do have a less common effect of my immune system attacking my lungs.  Coughing is so severe at times, I have to vomit.  My back muscles have hurt for days from the effect of strenuous coughing.

I apologize for griping about my problems.  It's a lot more fun to write lighter, upbeat blog entries.  But I made a promise to myself and to some readers that I would tell the whole story.  I wrote earlier about the "Light at the end of the tunnel."  I entered that light when I returned to Alaska but apparently there are more tunnels ahead.  The darkness I'm experiencing now doesn't have a light, just an uncertain future and a less than great prognosis.  The light will eventually show itself and I know I'll get there.  I just don't know when.

Back to Seattle

My three month follow-up appointment in Seattle is coming up on June 6.  It's really more than three months but it was the soonest they could schedule an appoint from last February.  They sent my list of appointments yesterday.  It will be a full day of tests, ending with an hour and a half discussion with doctors.  The sad part is, there isn't a bone marrow aspiration. There won't be a test to see if the cancer is gone or has come back.  I don't understand why but they typically don't do that test for an entire year after the transplant.

GVHD (Graft versus Host Disease) is their real concern right now.  That's the disease from a new immune system fighting against a foreign body.  It's very real and I've had many aggravating symptoms for months.  It's their primary concern because it's a potential killer within the first year of a transplant. 

So we have conflicting concerns.  I wonder about the cancer, they worry about GVHD.  My first question for them will be "Why can't we check both?" 

Why me?

I was recently reminded of the sadness brought by cancer and the incredible support from my community, family and students.  It reminded me of a selfish thought that I had over and over for the past several months.  I'm not proud of it but writing it down for the first time helps to get it off my chest.  

 My journey through many sessions of chemotherapy, eating fist fulls of drugs and two transplants made me ask the age old question, why me.  Why do I have to suffer this way.  I didn’t deserve the pain, the agony and the depression.  I believe that I’m generally a good person, kind to others and I think I have a good heart, so why me?  Each time that fleeting thought would come to mind, I would think of my neighbors in the Pete Gross House.  Most were better off than I was but many were not.  They were struggling to just survive, to live another week or month or possibly another year.  They were hanging onto a fragile thread of life that could break at any moment.  

My condition was temporary, certain to recover and live my own life.  Self sympathy made me ask myself “Why me?  Why do I have to suffer?”  Reality of my surroundings made me ask, “Why them?”  They didn’t deserve to be terminally ill.  They didn’t ask for the pain and suffering at a far greater level than I could comprehend.  My shame of self pity would always end with asking the question in another way.  “Why me?  Why am I the lucky one?”

Graduated

Graduation is done!  The students played like champs.  Everyone was happy.  It's exciting to watch the graduates move on with their lives.  Some will make great choices and some won't but they will hopefully all live very long and happy lives.  They deserve it!

Graduation

Alaska graduates their students early.  It makes sense.  The tourism industry is hiring Summer workers now and our relatively few warm months will be pass quickly.  Today is the last day for my fifteen band seniors.  I've said it before but it's worth repeating.  They're an amazing group of young men and women.  All of them are bright, respectful of others and just all around "good people."  I'll miss them at school but it's great to see them go out into the world and flourish! 

Crackling

It's been too long between blogs.  For the past many months of blogging, the only times I have allowed more than three days to pass before another blog is due to sickness.  This lapse is no exception. 

My so-called optimism is real but I have to acknowledge another reality that is beyond my control.  When I started treatment at the Seattle Cancer Care Alliance a very informative doctor sat me down at a table and gave it to me straight.  She said 12% to 15% of allogeneic transplant patients don't survive the first year following the transplant.  Many others contract illnesses that alter their lives forever leading to immobilization or requiring supplemental oxygen twenty-four hours per day.  The leading cause of death is pneumonia, in part due to immune suppressant drugs and partly due to the infant nature of the donor immune system. 

I contracted a cold recently.  It sank into my lungs where I can hear a constant crackling and wheezing which are clear signs of pneumonia.  No worries though, I did go to a doctor this weekend and he was pretty certain I don't have pneumonia but it was enough of a scare to cause concern.  The most annoying part is the sound keeps me awake for all hours.  I've always had severe annoyance to certain sounds like chewing or typing.  This seems to fit in that category. 

My concern this weekend is just another of a thousand reminders that cancer and the treatment of cancer with all of it's residual side effects and potential threats on life itself is dangerous.  I still have no doubt that I'll get through my one year post-transplant without a serious illness.  But I have to concede that it's been tougher than expected.  I actually thought it would be a breeze by this point in the recovery.  The breeze will come, just later than I had hoped.