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.
