The "C" Word
And then there was that time I heard, “It’s cancer. I’m sorry.”
On January 14, 2015, I sat in an office waiting to see the doctor who specialized in hematologic malignancies (say that fast five times).
And as we left, I remember hearing my husband and sister remarking at how encouraging the whole appointment was. I remember wanting to scream, “Did you not hear that part about cancer?”
I knew we were all absorbing the news in our own way. They were relieved that the immediate future didn’t include chemo. I was terrified because the immediate future didn’t include treatment, but rather a “watch and wait” approach.
I've prayed and asked God how best to share this news. It has taken until now to feel released to even say the "C" word.
For the past year and a half, I’ve been dealing with a pretty serious health issue. Several years ago, I was diagnosed with Multiple Sclerosis, and have undergone treatment for about 9 years now, with no visible progression. Two years ago, in routine tests that monitor my MS, some of my labs showed that I was anemic, but not iron-deficient. Well, through a process that included monthly repeats of these labs, ultrasounds, and finally two bone marrow biopsies, it was determined that I have something called Myelofibrosis or MF for short.
MF is in a class of blood diseases known as Myeloproliferative Neoplasms, which is a fancy word for cancer. Specifically, MF is a chronic cancer of the bone marrow that usually occurs due to genetic mutations known as JAK2, CALR, or MPL. In my particular case, I have none of these mutations, so I'm known as Triple Negative. Often, if you're concerned about cancer or other serious disease, getting a negative result is what we long for...but while this might sound like “good news,” what it really means is that the mystery of how I am living with this only deepens. We tried going off my MS treatment to see if that would elevate the blood counts, which only resulted in progression of the MS (a new lesion in my cervical spine area). I had a minor procedure last Thanksgiving that in theory should’ve helped elevate my hemoglobin, but that was unsuccessful as well. At my physician’s advice, I’m on super doses of Vitamin D and B12, with a minor dose of iron. All of these have improved my energy very slightly, but the tests results do not change.
Right now, I'm considered "stable," and so at this time I'm not on any medications or chemo for the MF and continue with regular monitoring to be ready for any changes. My hema-oncologist has asked me to encourage my siblings and family to be entered into the bone marrow registry for future transplant opportunities, when/if that need arrives. Those are scary thoughts.
But there are no words that seem sufficient to describe my journey of the last two years. It’s involved some skillful navigation—from learning about this illness that I'd never even heard of before being diagnosed with it to having to gently correct people when they ask about my “Fibromyalgia.”
At first, I was very careful about telling people, not wanting my kids to hear things about what was going on and having that causing undue stress or worry for them when hearing that “c” word. But after talking with them in age-appropriate dialogue, I have recently made the decision to start sharing the news with people as it feels right. It's been hard to know what to share and when. It certainly doesn't make for the best small talk! But I am at the place now where I feel God is releasing me to start letting people know.
I'm really okay with what's happening now, but it's been hard for me to see the reactions of those I tell. They want to reach out, to comfort, but instead I find myself reassuring them! So I’m going to use the space here to let you know that God has given me an incredible promise, found in the 11th Chapter of the Gospel of John, “…His [her] sickness will not end in his [her] death but will bring great glory to God…” Although I do not know how this will look to my human eyes, I do know that no matter what, I have eternal life in Christ, I trust Him with my human heart, and I’m honored that my physical condition will be used for His glory.
Truly, none of us know the number of our days, but when you’re looking at a health challenge head on, the realization of that truth is underscored. For me, it makes me value each minute of each day that much more, and to take every opportunity to remind those I love of God’s goodness, which outshines any mortal condition!
