The story

My sister asked to write my story.  It isn’t an easy straight forward story – there are the major happenings, then the little stories that layer in between that makes the larger event bearable.  I will try; but in trying stories of love and support, will be there between the lines. They too are important.  I am so grateful to those people who have helped and continue to help me.  I apologize for not detailing your stories.  I am limited to 7500 characters.

You have cancer. That is something no one wants to hear one time.  I have been told that six times.  Sarcoma, rare.  Lucky me. The head of the Pathology Department at the Mayo Clinic – asked to keep my biopsy slides to use in his teaching.  Is it weird that made me happy?  (My cells are helping to teach!) 

I hate January.  Seriously, I do.  It seems that every time I was “officially” told I had cancer in January.  Since January 2003 I have been beating the odds.  At the Cleveland Clinic I was told that the cancer could kill me, and if I survived, there was a 1 in 500 chance of it returning.  I laughed and said, “Well, that means my chances of it returning are better than winning the lottery!”.  Let me explain, I have a warped sense of humor, always have.  If it has to do with me it is open game to me.  If you can’t laugh at yourself, who can you laugh at?  I actually have laughed plenty during this entire venture with cancer. 

Since January 2003 I have lost my left hamstring, right latissimus muscle, lower two thirds of the right lung, half my liver, a third of the pancreas, duodenum, gall bladder, part of the right pectoral muscle, a scoop of the right quad, several feet of lower intestine, a couple feet of small intestine, part of my stomach, and had several skin grafts (By the way when they fail you smell like a corpse.)

January 2003 my journey began at the Cleveland Clinic.  Biopsies, the doctor “officially” telling me I had cancer. 

I went through the MAID chemo and radiation.  Very difficult chemo.  Chemo brain is very real.

In 2008, I was offered a job in Virginia, as a contractor working on a Marine Base.  I passed the magic five-year mark, and time for change.  I turned over the shelter I founded to a wonderful group of people, and moved.  (For the record, I really loved my job.  The work was meh, but the people were awesome!  Loved working with Marines. They have warped sense of humors too.

Divorce in 2010, cancer returned in 2011.  Right lung, lower and upper intestine and the right pectoral muscle. I now have a basis for the worst pain you have ever felt in your life.  It is either having your abdomen sliced open from under your rib cage to the pelvic bone, or having your sternum cracked open.  Either way, it rates a 10.

2013 -  Whipple surgery was done. A Whipple is a surgery that entailed removing the following:  part of  my stomach, duodenum, part of the pancreas, part of the liver, the gall bladder, and several feet of intestine. Basically, they rearranged my digestive system. I always have Zofran because eating nauseates me.

2014 -  Right thigh. Attached to the quad. This one was actually one I laugh about.  No chemo this time – the basis for this decision is the fact it nearly killed me last time.  A day surgery, they went in scooped the tumor out of the leg, discharged by noon then I went to lunch with my son at a local Indian restaurant. Surgery was a Tuesday, they told me I had to take one day off work. I took Wednesday off, and I was bored.  I was back at work on Thursday.

March 2016.  The left lung, my GOOD lung. It was small. No chemo if Doc got good margins. Doc got good margins. I had surgery on a Monday. I took Monday, Tuesday off and you back to work full time Wednesday.

I actually thought that the worst of 2016 was done.  It was a bad year.  During the spring the company I worked for told us that they were not going to bid the contract they had with the Marine base I worked on.   I started looking for a job.  The contract ended at the end of July.  Job hunting started in earnest.  I picked up a couple of small part time jobs.  I need a job with good health insurance.  Right now, I am unemployed; but I am keeping the COBRA insurance paid for!  COBRA was cheaper than Obama Care, and better coverage!

November 2016, I started feeling like an elephant was sitting on my chest. December, I was in the ER, hospitalized, they thought they saw fluid in the lung they tried to drain it. It didn’t work. Surgery was scheduled for December 18. They  discovered pockets of fluid on the lung and surrounding the heart hiding tumors. They removed the fluid and debulked the tumors.

January 2017, a Saturday at 8:00 AM. I got a call from the doctor with the results. The cancer was back, and it was in fatty tissue surrounding the heart, actually it is on the upper aorta, and lymph nodes. My oncologist got the insurance company to approve the new anti-body treatment that was rushed through.  I am the first one in the area to get the treatment.  It was rushed through FDA in October of 2016.  February, I started LARTRUVO and doxorubisin.  Weird hair loss, fatigue, nausea, shortness of breath, side effects. 

I finished the original six cycles.  I had a PET scan done, the cancer on the upper aorta and lung seem to be stable.  However, a new tumor developed in the colon, while going through chemo.

Surgery isn’t an option unless it becomes a blockage.  It is too dangerous.  I’ll keep doing the Lartruvo for the next three months, along with CT scans to see how the colon tumor reacts.  If there is no reaction or growth, we will try the Yolandis.  Yolandis is derived from the sea sponge.  I have a feeling that Doc is going to have to convince the insurance company to pay for it.

June 29th was the infamous talk.  Optimistically my life span is expected to be 12 to 18 months.  My doctors (oncologist and surgeon) are encouraging my to do my bucket list.  (Yeah, that cost money and I have to pay for my insurance, and I am still unemployed – not for lack of trying.  Yes, I am still looking for a job.)

I always knew that cancer would be my end.  Just not ready for it.  Going to keep fighting.  But as the doctor and I talked, we both came to the conclusion I will fight, but I do not want to do the really harsh chemotherapies.  The quality of life is an issue for me.  Back and forth to the hospital.  Feeling half dead, not wanting to enjoy the simply joy of sitting on the deck.  I’ll fight, but quality of life really is important.

I want to see friends, make memories with my two children.  Get some bucket list things done – things drive across the USA and camp at the National Parks with my girls (dogs) in a 4 door Jeep Willey (my 2004 Malibu with 160,000 miles wouldn’t handle it.) Visit friends while driving the country. I could keep all my camping equipment in it and just randomly tell my dogs to jump in and lets go to the next National Park. See Stonehenge and touch it.  See places my roots are from.

I want to make a difference to people as I do a bucket list – lots of random acts of kindness anonymously.  (I do those now, but would love to do more) Make sure all the bills are paid, make sure final expenses are covered.  No life insurance.  Nothing to sell.

I don’t know how I’ll do it, but somehow, I’ll find a way, I hope.