Mantle cell lymphoma, 5 year mark and “Get out of jail” card

I haven’t written for a while. The first reason is my daughter married in January. It was a glorious wedding and Carrie and Brandon’s special day was more than any mother could dream of or ask for.

Carrie’s wedding was a milestone for me. When I was first diagnosed with cancer my immediate thought was I want to see my children marry and I want see my grandbabies born. Indeed, this was an answer to my prayers and a celebratory event in more ways than one! I shed a few tears and thanked God for this blessing as I witnessed my grown daughter and her new husband exchange their covenantal vows.

The other reason is the closer I get to my five year diagnose anniversary I find I am experiencing odd emotions. I remember hearing from the medical community that the five year mark is a BIG one. For some types of cancer, if you pass the five year mark cancer free, you are considered cured. So I would assume those who had those types of cancers, the five year mark means everything to them. It is probably like a “get out of jail” card – and the hugest sigh of relief heard around the globe.

I was told my cancer, mantle cell lymphoma, is not curable but as the years pass by cancer free, the more unlikely my cancer will return. My primary oncologist, Dr. Glenn, would pride in herself in telling me during my treatment and a few years post treatment, that not one of her patients relapsed who had the same treatment protocol as I did. That was comforting and encouraging but in having cancer and a difficult psychological recovery, hard to accept as true for me. But now I am beginning to wonder . . . could I possibly remain cancer free the rest of my life?

My cancer journey brought about an amazing life change – for the good. I can think of only a few who psychologically suffered as much as I did (or people aren’t sharing with us their true mental and emotional struggles post cancer) but through the suffering and then adjusting to the fact I had cancer followed by accepting the fact I had cancer, who I was prior to cancer changed into a better person in every way. And, funny, the work continues . . . and that’s probably why I am having these odd emotions as I approach the five year date.

Being told you have cancer is traumatic enough, but being told you have an incurable cancer screams death may come soon. And then going through treatment with all this toxic stuff being pumped directly into my heart, a bizillion blood draws, a trillion PET/CT scans, viruses of unknown origin, administering daily neupogen shots, the fear of an infected port line, blood transfusions and platelet transfusions, the fear of pneumonia, having radioactive isotopes dripped into my body, facing a stem cell transplant and denying the extreme seriousness of this transplant, being told by someone this is critically serious and I could die, terrible mouth sores and gut sores, hallucinations . . . oh, I’ll stop there as I could go on and on.

But I survived! I survived all that to only find myself in a very deep, dark depression that seemed to last for a very long time. I never thought a time would come that I wouldn’t find myself thinking every dee dang day about my cancer. I never thought a day would come when I wouldn’t think about relapse and so I waited for it. I would read from survivors, “Cancer doesn’t define me.” What? Cancer defines every inch of my life down to the nucleus of every cell. That statement infuriated me!

But with the help of some counseling and the bedrock of my faith, I came out of my depression and began to move forward. Instead of thinking and planning only three months out, I began planning six months ahead and then I found myself thinking a year from now. And then I realized I didn’t think about cancer every day or even for a few days. As research progressed in the short time from my diagnose, mantle cell may never be cured but the cancer can be maintained by a new generation of drugs; knowing this alleviated my fear of recurrence and death no longer screamed at me..

So where did all this bad news go? I lived with a “bad” outlook for years after my treatment. I waited for the 60-70% non-cure rate to manifest in my life. I was hyper-vigilant and wary, I submerged myself into the cancer world reading everything I could. I advocated and mentored. I empathized and shared people’s fear and sorrow. Always thinking it will soon come back – but it didn’t, it hasn’t.

While in-patient at Huntsman, living there for either a 5 day or 7 day stint, the nursing staff became my life line. I got to know the patients who shared the same treatment schedule. I saw parents and children of those who were being treated. I listened to Jason’s plans of summer camping once his treatment was finished. I saw a family come daily to be with their wife and mother. Jason died, the wife and mother died. I walked the halls to exercise my sedentary body. I was there in the heat of summer and I was there at the first snowfall.

That life was so in my face, hyper-colored and five senses; it was intense and driven, laser focused and unreally real. And now? I am moving further and further away from that life. And that is it. That fight or die existence is becoming a distant memory; all those emotions are becoming fuzzy. How do I incorporate that life and my almost extended five year mark life?

. . . conclusion following . . .

I am a mantle cell lymphoma survivor

I walked out of my oncologist’s office today thinking, “How can my normals get any more normaler?”

Another four month appointment has passed.  Today at 10:30 a.m. I signed in at Dr. Goodman’s office for another “follow up” appointment.   I am feeling so well nowadays that I didn’t expect any surprises – like in relapse, you know.

First, I stood on that weight scale that did me no good my last visit.  This time I was dressed in summer clothing rather than heavy winter clothing, I am exercising regularly and I am often out in our yard gardening.  Mind you, my gardening isn’t just plucking dead flowers off the stem,  I am really laboring; I trim my flower gardens, fix sprinklers, dig holes, and so on.  This time I won on the scale!!  I lost a few pounds!!  Phew.

Then I met with Dawn, Dr. Goodman’s assistant.  We had the usual welcoming chatter and then she went on to tell my all my blood work looks good.  At this point in my cancer adventure, my blood work is what is the first indicator if all is well or not.  My CBC (complete blood count) was as normal as it can get for me.  Next Dawn said that my full blood work up showed all is well.  Of course, and to be expected, my IgG’s are in the toilet (IgG’s are viral fighting anti-bodies that my body no longer produces since my auto stem cell transplant) so I am scheduled for an infusion replenishing IgG’s in order to get a jump on the oncoming cold and flu season.

After Dawn palpably worked over my body, I asked her what part of the blood test are my marker indicators.  She said in MCL the LDH and Beta-2 Microglobulin are the two blood markers for any changes with my type of cancer.  Both are in the normal range.   Another indicator found on the CBC is the percentage of lymphocytes in my blood.  I write all this because I really never knew what my docs looked for.  I knew a CT and/or PET/CT scan shows cancer activity but that is done once a year.  So for the in between times,  my blood is drawn every four months or so to track any changes.  And, of course, any physical changes on my body are another indicator that something is up.  So between the regular blood draws and me noticing any physical changes,  that is how I can tell if something is off.

Mantle cell lymphoma is an odd and unpredictable cancer.  There is so much research being done  in MCL.  The information is a bit confusing to me.  Some world-renowned doctors specializing in MCL say this cancer can be cured, especially with the new forms of treatment (newer than my type of treatment).  Other docs say it is incurable and it is a matter of time before MCL rears its ugly head again.  So with this contradictory information I must keep on pushing forward and stand very uprightly in the fact I remain cancer free.  If I was to live by the back and forth debate the world-renowned docs’ research papers claim then I would be a wreck.

So in not waiting for an agreed upon consensus in the matter of whether MCL is curable or not, I will live my life with great joy and expectation!  I don’t sense a soon to be adieu, or even a later adieu, so I plan my life accordingly.

It is worth every penny to attend my nieces’ weddings, it is worth hiking to places I’ve never been before and paying the physical exertion price the next day; I keep planting more and more flowers in my gardens and I enjoy the presence of my two adult children joining us for dinner.  I look forward to camping and touring more of Montana and I want to plan a trip to Hawaii.  I also want to see more of the world.  I have a crazy idea of visiting Africa and the Antarctic.  I want to fly fish better (will I ever?).  I want to visit my daughter in Pennsylvania, too, especially in the fall in order to travel northward to see the beautiful fall  colors.  There is so much to do and life is too short to stay at home saving all our pennies for later in life.  (Yes, there is some financial  responsibility we must prepare for.)  And I want to see my girlfriends more often, like in an annual girls weekend.  I also want to see my cousins more often,  maybe meet at some wonderful, spa-like destination.  Oh, and I would love to ski faster and go down steeper terrain and learn how to ski powder.

I love my normal reports, I really do.

A decade after a cancer diagnosis: musings on life, by Betsy de Parry

You have cancer. Exactly 10 years ago today, I heard those frightening words. I was driving north on US 23 and might as well have been slammed by the semi that was traveling next to me.

Nine months later — after being diagnosed with an “incurable” form of non-Hodgkin lymphoma that resisted two back-to-back chemotherapy regimens — I was rescued by a new treatment that came along in the nick of time: radioimmunotherapy, developed by UM’s Dr. Mark Kaminski. I’ve been healthy since.

So much for “incurable,” although my medical records indicate that I have achieved “durable, long-term remission.” But it doesn’t really matter what my records say because a chart stamped “cured” isn’t a prerequisite for living a full, happy life.

As I reflect back on the last decade, I’ve learned, among many things, that cancer may leave our bodies but it never leaves our lives. Far from it. For survivors, the followup medical tests that forever punctuate our lives are reminders of what was and what might be again. I know. I had a CT scan just two days ago. Thankfully, it confirmed that I’ve been disease free for 9 years, 3 months and 26 days. But who’s counting?

I’ve also learned that it’s not hard for us to become cancerchondriacs. Ordinary aches and pains can play such havoc with our emotions that we secretly rejoice when a pain in our belly is simply gas.

As a friend of mine says, “When your world has crashed before your eyes, it’s hard to remember that anything could be something other than cancer.”

Another adds, “We’re scarred by our diagnosis. Every ache is a recurrence. Luckily, most of the time, reality is not as bad as our fears, but we become worry warriors.”

No matter how different our experiences, we survivors have at least one thing in common: cancer shoves mortality in our faces and shatters our naive illusion that we can always count on our bodies to cooperate. It forces us to live with uncertainty as our constant companion. And that’s easier said than done.

Every one of us would love a guarantee that cancer will never recur, but no such guarantee exists. As long as we’re alive, illness — of any kind — is a risk of life itself and death will always be a certainty. It seems to me that what I do between now and then is much more important than worrying about the inevitable.

And so I’ve learned to plan — to live — with purpose and priority alongside a couple of lessons that cancer forced me to accept: we can’t always shape our own destinies nor are we always in control of our lives, much as we’d all like to believe. Quick, concrete answers and predictable outcomes aren’t always possible, much as we all want them.

But cancer also taught me that impossible is simply a word that may or may not be relevant.

And it gave me the freedom to savor the present like never before. After all, none of us knows what’s around the next bend in life, so why not enjoy the present?

Yes, cancer taught me many lessons, including that adjusting to the experience doesn’t happen once and then it’s over. I wish it were that easy, but putting cancer into the context of our lives is an ever-changing, ongoing process because it’s one of those life-altering events that can change the way we feel, the way we think, the way we see ourselves and even the way we see the world.

I’ve accepted that cancer will always be a part of my life. But it will never define it. I refuse to be paralyzed by what-if’s or to live in anticipation of my inevitable demise. On the contrary. Although it’s impossible to forget the pain and anguish that cancer inflicted on my family, being rescued from the jaws of death leaves a lasting sense of wonder and zest for life.

It leaves a lasting sense of gratitude to the many people who helped me through the most difficult time of my life, including my husband who, during my illness, stopped his life many times to help me rescue mine and my extraordinary medical team, led by Dr. Kaminski, who, for all these 10 years, has cared not only for me but also about me.

It leaves a sense of excitement at the scientific advances that have been made in this last decade, but also a sense of frustration that unraveling the mysteries of cancer is an agonizingly slow process.

I’ve had the privilege of meeting many physician/researchers and scientists, and I’ve been awed by the persistence and passion that drive them. And I’ve been awed by many survivors and their families who have faced challenges with remarkable grace and dignity, many of whom have re-directed their own lives to help those who follow in our footsteps.

Collectively, they’ve shown me that cancer gives context to compassion, and they’ve shown me more of that than I ever dreamed possible. They’ve shown me the very best of humanity and the resilience of human beings.

I would never have cancer by choice, but having had it, I wouldn’t trade the view of the world that it gave me for anything.

Andy Dufresne got it right when he said in The Shawshank Redemption, “You can get busy living, or you can get busy dying.” I choose to stay very busy living.

Betsy de Parry is the author of Adventures In Cancer Land and the producer of Candid Cancer reports for the PBS show A Wider World which airs in this area on Tuesdays at 5:30 p.m. on WTVS. Find her on Facebook or email her.