July 7, 2013 -- The “R” Word

As we go through life, we are given many rules, things we need to do and things we need to avoid. Words have become one of the problem areas in our country as we become more politically correct. Paula Deen has become a pariah and lost a fortune because of her admitted use of the “N” word.  Cancer has become common place in many of our lives as more and more friends and relatives are affected. We sometimes choose to avoid the use of certain words like cancer and refer to it as the Big “C”.  I have had one word that I have kept out of my vocabulary in the past few years, not because it was a bad word, but because it was a word that seemed so foreign to me.

When I was diagnosed with Multiple Myeloma, the first thing that I had to wrestle with aside from the fact that I was now part of the Big “C” clan was that it was incurable. MM is referred to as being a treatable yet incurable cancer.  Certainly treatable, but over 10,000 people still die in the United States every year from this form of blood cancer.  It was very hard for me to wrap my head around having to deal with this cancer for the rest of my life. 

I’ll never forget an online webinar that Julia and I tuned in when the guest speaker said that we basically have a cure because we have many options for chemotherapy.  Obviously, this doctor hadn’t spent much time sitting in a cancer clinic La-Z-Boy with a needle in her arm. Waking up every day for the rest of your life knowing that there was no end to being treated, isn’t an easy pill to swallow.   Yet knowing the alternative is death puts a whole new spin on it.

When I received my stem cell transplant, I held out the hope that although not cured, I would be able to say I was in remission.  Despite doing everything I needed to do when I received my transplant, it just didn’t do everything I had hoped.  Although I was in a state of “very good partial” remission, I still had the cancer with me every day.  Every day I worried if it was getting worse.  Five months after I received the transplant, my numbers started drifting up and I was certain that the transplant had given me little more than an additional six months of life. It was no way to spend Christmas.

I was so worried that I talked Dr. Mikhael into letting me have a blood test two weeks later to see if things had changed.  The fact that I would suggest to a doctor that I wanted someone to stick a needle in my arm shows exactly how nervous I was about the previous result.  The results were better and the cancer seemed to settle down for the next year as I lived my life without chemotherapy.

Then in January, 2011 it became evident that the transplant had run its course and the cancer was getting stronger with every blood test.  It was slow and gradual, but every test got worse.  In July, I began chemo again. It wasn’t too bad as it was just a pill, but there were some unwanted side affects that would not go away.  I had given the transplant its shot and it helped, but I was never going to be able to say that I was in complete remission.  It was something that I could live with, but not something that I was comfortable with.

Six months later, despite doubling the dosage, it became evident that the drug that worked for most people would not work for me.  My cancer was now almost as bad as when we found it originally, three years earlier.   Like most cancer patients, I was ready to move on to the next chemo.  As a cancer survivor, your hope is that the next therapy will work better than the last. You are not always rewarded, but you continue to hold out that hope.  The next attempt would be a cocktail of two different chemotherapies and a steroid.  I had hope, but I have learned to never get too high or too low, just hang in there.

When I received the results the next month, I couldn’t believe my eyes.  There results were better than I had every received, even better than after my transplant. Could this be the “magic pill” as they say in business? It was so unbelievable that I called Megan Connelly who had been my transplant coordinator to see if there was a typo.  It still wasn’t in the normal range, but the change was drastic from the previous month.

The next month was even better as I entered the normal range for the first time ever.  I remembered the phrase, “no cure but treatable.” It seems that I might actually know how that feels. The months moved on and the results remained amazing even as we extended the time between treatments.  Over the next 14 months I moved from having a treatment every week to once every three weeks, yet still the same results.

In April, 2013 Dr. Mikhael made the decision to move the treatment to once every four weeks and to not have another blood test for three months. I had never gone that long.  The Nervous Nellie that I am was at full strength. Elongating the treatment cycle and not checking for three months, was this man mad? I tried to put it out of my mind, but it was always there. This was going to be the most important test of my life.  Just like on the “Bachelor” when they have the most intense Rose Ceremony EVER, this would be the most important blood test EVER.

The nice thing about going to the Mayo Clinic is that you can get results online in a matter of hours on the majority of tests and within 24 hours on the important cancer number. When I got the results I was able to breathe a sigh of relief as the numbers were as good as I had ever received.  I now knew that I could stay with treatment just one time each month and as a result have less side effects and a more normal life.

That was on Wednesday and I had an appointment with Dr. Mikhael on Friday. I really just expected the same pleasantries that we always have when things are going well. We talk about our lives and schedule the next appointment.  Then my whole life changed. Dr. Mikhael used the “R” word, a word that I had given up using and even hoping.  He said I was in remission.

The words rang in the room. I was in remission.

I was always going to fight the fight, but I never thought I would be here. I never thought I would ever be off chemo for as long as I was alive.  But the words were said. I was in remission.  Now understand, Dr. Mikhael in the same breath said that the cancer would come back. This wasn’t forever. But somehow, that didn’t matter. It could last three months, it could last three years, we won’t know until it is over. But I’m going to be enjoying this time cancer free.

To complete the circle, the first person I told was Megan.  She has moved from stem cell transplant coordinator to being a nurse in the oncology area at the Mayo.  From being the first person to help me through my transplant to being the first person that knew other than Julia and I that I was in remission.  Somehow it just seemed right.

 

Thank you all for keeping me and our family in your prayers through these 4 1/2 years.