Go Forth and Multiply

I am dedicating this post to the conversation of whether to continue plans for a family once an incurable cancer is introduced into the picture. 

Unfortunately, due to the increasing rate of younger patients being diagnosed with Multiple Myeloma, this issue has presented itself one too many times.  MM has the capability of destructing so much in its path, the miracle and ultimate blessing of children is one of the worst atrocities, in my humble opinion. 

So, how do we fight back? 

When Kirk was diagnosed, he had to begin treatment immediately.  We just had our youngest son, Guy, and the thoughts of growing our family were not a high priority. 

Most Multiple Myeloma patients will be treated with Revlimid from the beginning stages, and as we quickly learned, that particular drug causes severe birth defects.  What we did not learn, however, was how long Kirk was going to be on Revlimid.  Or that a stem cell transplant causes most men to become sterile. 

Our doctor told us that there was a small window of time we could "make deposits in a bank."  After Kirk completed his five rounds of chemotherapy, we had an eight week period of time between the chemotherapy and the first stem cell transplant.  Our doctor told us to wait six weeks after chemo and bank before Kirk started giving himself the neupogen shots for stem cell collection.   That gave us a total of five days. 

It was an agonizing decision, but we decided that things were difficult enough between the cancer, the new baby and our two businesses.  However, for a couple that desired children, the five days would have been exactly what was needed to give them some hope that life can overcome MM.

Of course, there is a percentage of men who do not become sterile after transplant.  And I have read that after time, a man can rebound.  Lastly, adoption would be such a beautiful life choice. 

An acquaintance asked me recently if Kirk and I could have more children, and I said probably not, but I would not hesitate to try if ever given the option again.  This person asked me if I thought it was fair to have more children when the possibility existed that Kirk would not be with us.  Fair for whom, I asked.  She said for all of us.  I gave her a short non-committal answer because I was taken back by the question.

A few months later, I watched an interview with Steve Irwin's wife and two children on Oprah.  His wife said that their little boy watches videos of his father everyday, and the little boy was crying during the interview.  I literally felt myself turn inside out in pain.  I could not help but to put Guy's face on that little boy.  I felt like I was witnessing the pain that Guy would experience one day, and it was truly unbearable.  I thought about that woman's question all day. 

And this is what I have decided.  I am not a fan of the word "fair" after all of the recent changes in our life.  I am, however, grateful for the pain and hardship that we all feel as a result of Kirk's illness.  We feel this pain because of the importance of Kirk in our lives.  We feel this pain because we have been blessed with love.  Guy will hurt, and it will take all of my strength to pull him through the hard times, but I am so grateful that Guy has been blessed with a loving, caring, fun, and actively involved father.  Regardless of whether we have Kirk for one more year, ten more years, or even thirty, it is more than "fair" for all of us, plus anyone else that might happen to come along:-)

So, good tidings to all of you who choose to go forth and multiply!

Chemotherapy

When Kirk first began his chemotherapy treatment, the wheels had totally fallen off the wagon.  He had multiple sores in his mouth, a horribly itchy rash on his back, herpes in his eye, and he was unable to walk due to the compressed vertebrae.  He felt awful, and he looked awful (which is a difficult feat for such a handsome man;-)  The picture above was taken prior to his first chemo session.  He slept in a recliner that his Aunt brought over because of the back spasms that would take over if he laid flat. 

Kirk's first day of chemo began on a Saturday morning, and it surprised me to learn that chemotherapy actually occurs on the weekend as well.  I later learned that chemotherapy takes place no matter what . .  holidays, weekends, a global disaster.  Chemo goes on. 

Kirk slept through that first day while the nurse gave me a book of what to expect when you are expecting your whole life to crumble because your husband is receiving chemo for a cancer you have yet learned how to pronounce properly.  It was huge and overwhelming.  I cried, she patted my knee, and the entire process took about two hours.  Kirk does not remember anything about that appointment to this day.

Kirk began with only Velcade/Dex. This is a very important detail for anyone with the t 4;14 because new studies are showing that Velcade can overcome the high risk status of t 4;14.   A round of chemo is two weeks on and ten days off.  Kirk underwent a total of five rounds of chemo prior to stem cell transplant. 

Beginning values               4120 M protein               4330.0 IGA

December 22                         3915.0 M protein               3670.0 IGA

January 4                               4080.0 M protein               4084.0 IGA

I find it necessary to stop here for a moment and reflect on the scare these values gave Kirk and I initially.  It appeared to us that the cancer was not reacting to the chemotherapy.  In actuality, we learned that MM can build a resistance to treatment and this was happening in Kirk's body quite rapidly.  So the big gun of chemo for MM was not working for my husband, but that is when our doctor added Revlimid to the mix and Kirk's numbers dropped almost by half in February. 

I would like to add one more note in this pause from numbers for all the caregivers to a MM patient.  Always insist that the nurse give your loved one the Dex (steroid) SLOWLY  into their IV because if it is given too quickly it can cause a pain to shoot up from the backside.  It was described to us like fire ants in the pants, and Kirk told me that this is an accurate description.  So, always ask the nurse for a nice and slow injection.

January 22                             2270.0 M protein               2270.0 IGA

February 12                           1185.0 M protein               1860.0 IGA

March 8                                1125.0 M protein                1650.0 IGA

March 23                                  .937 M protein                1310.0 IGA

If there is one thing I have learned this past year about MM, it is that things can look bleak one minute, but right themselves out the next.  Keep your hope alive no matter what the circumstances.  We felt such despair when Kirk was not responding to treatment, and then such relief when the Revlimid began working its magic.  It was the good news we desperately needed to continue to move along in high spirits.

And move along we did throughout that winter of treatment, fatigue, minor paralysis in Kirk's hands and feet from the Velcade, and sleepless nights caused by the surge of energy only Dex can bring on in the body.  Kirk was blessed with only these minor side affects from the chemo, and we were surprised at how much we were able to do and enjoy in the midst of treatment.  It was a part of our life, not the entirety of our life at that time.

We continued to move forward by traveling to some of our favorite winter destinations and enjoying the energy and happiness our son brought to our daily existence.  And as good fortune had it, the easy routine of the chemotherapy sessions did make us feel stronger and more in charge of things we did not have any control over in our lives.  We would arrive at the hospital fifteen minutes early and pick up a cup of gourmet coffee and the most delicious cupcakes from Cheryl's Cookies, and we would enjoy the precious time away from our son and the restaurant just talking with each other about anything not related to cancer.  We did a lot of talking that winter, and a lot of hugging, and a lot of crying, and a lot of laughing.  But mostly, it was the winter we did a lot of loving.  And that in itself was a blessing.

The Diagnosis

I promise you, reader, you will either absorb every number I am about to throw at you in an attempt to diagnose the severity of your cancer or your loved one's cancer (as I did) or the beginning of this blog will bore you completely. 

December of 2009.  Kirk is lying in a hospital bed at the Cleveland Clinic.  His MM presents as the following:  

1)  Advanced bone disease (multiple lesions in his spine, femur, hip, skull, and rib bones). 

2)  Hypercalciema at 13

3)  Anemia hemoglobin at 8.0

4)  B2-M at 3.9

5)  Monoclonal Protein, Serum 4120

6)  IgA, Nephelometry 4330.0 H

**We find out in December of 2010, one year later, that Kirk is positive for the chromosome abnormality t 4;14.  This is an incredibly important part of the puzzle that we did not discover early on due to the effectiveness (or should I write the ineffectiveness) of different bone marrow biopsies performed by different facilities**

The doctor at the first facility gives Kirk steroids to control the bone damage and tells us that he has 3 to 5 years to live.  We feel devastated.  I begin falling down a black hole that I do not have the life skills to climb out of yet.

I wake up in the middle of the night by the hospital bed and listen to Kirk and our hospital roommate praying together.  Our roommate's name is Curtis, and he is in a wheelchair by the side of our bed.  He lost the use of his legs during his teenage years due to a gun shot wound to his spine.  They are thanking God.

A friend of the family who lost his wife to ovarian cancer tells me that things will get better when Kirk begins treatment.  He tells me the treatment will give us consistency and put us on the path of hope again.  I nod to him on the phone and try to listen, but my mind is not ready to accept this reality.

I discover that there is a pod of computers on the eleventh floor of the hospital, and I decide to sneak away while Kirk is sleeping to learn more about this cancer.  As always, my favorite habit of reading and studying begins to occupy my mind with rational thoughts.  I begin to see the things that I need to do to take action.  So, I make a list of duties that I need to complete:  call our insurance company and get information about
coverage, research the best treatment facility, call that facility and make an appointment, get Kirk home so he can begin healing in his own bed.  I look at my small list and feel better, stronger somehow.  I do not realize it, but I have taken the first step in the fight.

A few days later, Kirk is released, but unable to walk due to four compressed vertebrae.  We come home, kiss our baby, and I put up our Christmas tree in an attempt to make our house feel normal again.  A concept I read in an article about MM regarding "the new normal" pops into my mind every now and again.  I do not want a "new" normal, I want our old normal again, and I am determined to make this happen one Christmas ornament at a time.  I install handicapped accessible hardware in our bathrooms and call a home health care agency in our area and confirm that we have coverage if I need at home assistance for Kirk.  Thank God, things have never come to that. 

After discussing the pros and cons of different treatment centers, we decide on The James Cancer at OSU because of many reasons, but primarily because it is covered under our insurance plan and its proximity to our home. 

And wouldn't you know it, our good friend was right.  The easy rhythm of the treatment schedule does soothe us into a better state of mind.  We are finally taking action and it feels really, really good.  The treatment lulls us into the acceptance of our "new normal."

Introduction

I have dedicated myself to writing this blog about my husband, who was diagnosed with Multiple Myeloma in December of 2009, in an effort to provide support to those who have also been diagnosed with this challenging disease, to provide some insight into my experiences as a caretaker of a loved one with cancer, and to connect with other people in the same battle for life. 

My husband, Kirk, is 43 years old, and we have a two year old son together and a sixteen year old son from Kirk's previous marriage.  We live on a lake in Ohio where we own a seafood and steak restaurant and a Caribbean themed bar, which stay incredibly busy and hectic during the summer months.

During the summer of 2009, Kirk experienced tremendous back and rib pain that could not be relieved by multiple visits to our family physician and chiropractor.  At the peak of his pain, Kirk had crippling back spasms that left him bedridden for days at a time, multiple sores in his mouth and a thirty pound weight loss.  A visit to the emergency room, a few blood tests, a bone marrow biopsy and too many x-rays finally led to the diagnosis of Multiple Myeloma.  Kirk was only 42 years old.  Our little boy just turned one, and we celebrated our five year wedding anniversary in the hospital.  Those are what I like to refer to as "The Dark Days."

But, I want to rewind a little and describe my husband independent of the cancer.  Kirk is a talented artist and an entrepreneur.  He is a dreamer who managed to turn his passions into a career, which we feel is a great blessing.  Kirk's hero is Walt Disney because of his ability to fuse art, creativity, construction, and business into an empire built around the concept of FUN.  Kirk's ability to have fun and enjoy life has always been inspiring, and he radiates the feeling that everyone is welcome at his table.  The most admirable quality in Kirk is his loving nature as the father of his two boys. 

The one life dream that Kirk has yet to achieve is purchasing a blue water sailing boat and becoming a Cruiser.  It is that reason I have named our blog "The Myeloma Mariner."  This is just the beginning.