Nervous?

Should I be nervous?  My follow up appointments start one week from today.  They're going to do an aggressive search for cancer throughout my body.  They will also check on Graft versus Host Disease and a bunch of other symptoms that could be signs of something terrible.  The results of those tests will no doubt determine how I'll be for the next year or so.  They will most likely determine how long I'll live.

When I look at the possibilities, I know that I should be worried.  I should be nervous of what they might say or at least anxious of what they may find lurking inside my bone marrow.  Instead, I'm content with whatever they throw at me.  If it's great news, I'll celebrate.  If it's bad news, I'll move on to attack it.  Either way, I'll be fine.  

I don't really understand my genuine lack of concern.  It may a blessing or it may a curse but so far I haven't lost any sleep over what they "might" say.  Maybe it's faith in myself or faith in my doctors ability to keep me alive.  It may even be foolish confidence.  Whatever the reason, I'll cross that bridge next week and I will share the news with whoever may be curious.

Nostalgia

Nostalgia, fear, warmth, anger...

Those are some of the very mixed emotions and feelings that I have while preparing to go back to the Seattle Cancer Care Alliance for a one year follow-up appointment.  I'll spend four days reliving the appointments, the blood draws the painful tests and the hundreds of questions regarding my health.  They will ask me to participate in research.  They will make me fast, they will collect bodily waste, they will pull one or two pieces of bone marrow from my hip, they will give me several shots and who knows how many other tests and procedures that they can fit into four days.

My return stirs feelings of nostalgia for a place that was about healing and about life.  Returning also reminds me of the emotions from other patients, particularly the fear of death and the sadness of knowing death is near.  The entire clinic was also about warmth and comfort for those in need.  The medical staff cared deeply about the well being of their patients.  I felt that warmth every day.  And finally, returning to the SCCA reminds me of the constant anger that I felt toward the evil disease that was changing so many lives without mercy and without remorse.

I'm happy return, regardless of the emotional good and the bad.  I should always feel the anger and the sense of fear from other cancer patients.  As I have started a normal life after the treatments, those feelings have unfortunately faded.  I want those feelings to be with me for the rest of my life.  I owe it to other patients and to those who have devoted their lives to fight cancer.  I'll always remember, always allow my body and disease to be studied and I'll always ask, "What can I do to help wipe out this disease?"

Step by step

New discoveries and research of cancer treatments are being constantly introduced.  A question that must run through every cancer patient's mind is, "What new medicines are being introduced?  Is there a cure around the corner."  I certainly asked this of my doctors and so did others who were being treated last Summer.  The answer was always disappointing.  The doctors would list a handful of new treatments and drugs but the results of testing revealed that the improvements were minuscule. 

Three new drugs have recently been released for treatment of multiple myeloma.  The most promising is a drug called ixazomib.  It was tested on patients who have had a relapse after one prior treatment.  But the results of testing show that this drug increases life expectancy for myeloma patients from just 14.7 months to 20.6 months.  

Don't get me wrong, an additional six months of life is a wonderful improvement.  The research and development of this drug probably took years.  Any advancement is a good thing and the people searching for drugs to fight cancer are heroes.  But short of a cure, it's not good enough.  There will some day be a cure for multiple myeloma and all of the other cancers.  That cure exists today.  We just don't yet know what it is.  Until then, people will die, others will suffer.  Cancer will keep devastating families with fear and destruction.  We have to find a cure.  But as my doctors said over and over, it takes time, lots of time.

Who is my donor?

What do you say to someone, a complete stranger from another country, who volunteered to save your life?  My allogeneic transplant happened one year ago on November 6th.  On that date, one year after the transplant, I can send a message to that individual, offering to exchange names and contact information.  If he agrees, it will open the channel for me to contact him and thank him for saving my life.

I know all too well what he went through because I went through it as well.  The first transplant was called an autologous transplant.  It was a reboot of my bone marrow and blood with my own stem cells.  That transplant happen a bit earlier on August 20.  Before I received the transplant, they had to extract stem cells from my blood which is the same procedure my donor volunteered to go through in early November.

The process involves taking a drug that increases the amount of stem cells in the blood.  The drug causes pain in the bones as the stem cells are pulled from the bone marrow.  For some, the pain can be excruciating.  Most of the time, it's a mild pain from the pelvis and areas of high bone density.  The next and final step is to lay in a hospital bed with an full time attendant in the room.  Two IV's, one in each arm circulate blood into a centrifuge machine which extracts the stem cells and return the blood through the other arm.  The patient is required to be completely still for several hours each day and the entire process can take up to four days.

That's what a twenty-four year old male from Europe did to donate stem cells to a fifty-six year old male in the United States.  The two who were selected as donors before this individual either backed out were not compatible for some reason.  I am forever grateful to my medical staff, friends and family and several strangers who offered support in so many ways.  This individual somewhere in Europe donated a part of his body to be a part of mine.  It's an odd feeling that my bone marrow and blood came from another person.  But it's even more remarkable that somebody had enough compassion to give so much to a person they may never meet.  If either of us doesn't want to know the name of the other, we'll remain strangers forever.  My hope is to find out his contact information and start with a simple "Thank you" or "Danke" or "Merci" or "Gracias" or even "Takk."  I'll find out which language to use in less than a month.

I Concede (just a little)

I have to admit it.  Getting back to full health has been a much more difficult road than I ever imagined.  Telling myself and others that I'm "Nearly 100% healthy," doesn't help when I have trouble walking more than a hundred yards, or when my legs decide to buckle after standing for fifteen minutes.  My optimism doesn't correct my vision when I can't read music due to a common eye problem cause by GVHD.  It doesn't help that getting over a simple cold that lasts for nearly a month due to a weak immune system.

I cherish my own resolve to beat cancer.  It has given me strength to fight, confidence to move on and the certainty of eventual health.  Admitting that it has been a tougher road than expected is as far as I'll go in conceding to cancer.  The day I concede more to this disease is the day my life will start a downward slide toward an end.  That will never happen.

By the way, I'm "Nearly 100% healthy!"

Brokaw

Tom Brokaw recently published an Op-Ed article in the New York Times, " Learning to Live With Cancer."

http://www.nytimes.com/2016/10/02/opinion/sunday/tom-brokaw-learning-to-live-with-cancer.html

Mr. Brokaw was diagnosed with multiple myeloma at the age of 73.  He wrote a book about his experience and has been a champion of cancer related charities ever since.  Every version of multiple myeloma is different but much of what he is still going through three years later is similar to the symptoms of others diagnosed with multiple myeloma and even those diagnosed with different versions of cancer.

The only part of his dialog that I can't accept is calling multiple myeloma incurable.  He also said the disease has a current patient lifespan of five years.  No doubt, his information is based on real data but I would argue that all data is old.  There are no statistics for individuals who were just diagnosed with this disease.  The statistics are not even out for those who picked up the disease three years ago. Simply put, they haven't died yet.  Those statistics are based on measuring death rates.

I respect Mr. Brokaw's writing.  He shared something deeply personal which can only result in more public awareness and hopefully help to advance a cure.  He has lived a life of truth and integrity.  He may be one of the most respected individuals in the country.

Mr. Brokaw said he is tempted to identify himself as a "Cancer Patient" as well a "Journalist."  I understand his changing identity but if I were to see him some day, I would encourage him to identify himself as a journalist and someone who may very well beat cancer.  Decades from now, when Mr. Brokaw eventually passes away, his part in the medical statistics will be that of a cured multiple myeloma patient.  I know that will be my role as well.