In "good" health
In July 2018, MICDS switched the base level insurance plan;
as a result, many of my doctors were no longer in network. I could pay substantially more to upgrade my
insurance to keep them, or pay out-of-network expenses, or find new
doctors. I’m a fiscally responsible gal,
so I decided to find new doctors, which included a new primary care
physician.
I met Dr. Sturm in late July 2018 and I immediately liked
her no-nonsense attitude. I came to her
for three reasons: 1. Establish a new relationship, 2. Get a routine check-up,
and 3. Discuss my ever worsening joint pain and swelling. My joint pain was so debilitating that I had
progressed from crying while running to not running at all to feeling pain each
time I walked. I immediately was
prescribed a regimen of arthritis meds (the same set I had used 8 years prior)
plus turmeric and a stretching routine.
She sent me out to do blood work – checking for rheumatoid arthritis,
among other things – and ordered me back soon.
I saw her on a Wednesday, had my blood draw on that Friday,
and she had me in to see a hematologist/oncologist on Wednesday, exactly 7 days
into our doctor/patient relationship. My
white blood cell count was low – uncomfortably low, in her estimation, and had
been for a long time – and she wanted answers.
Within a week I had a new primary care physician AND a new specialist.
I won’t lie. Meeting
a doctor in a “Cancer Care” ward was more than scary for me. Dr. Wilkes and his staff were amazing,
though, and Dr. Wilkes framed the process for me: since my white blood cell
numbers were historically low there was likely a root cause and he was
determined to find it. He’d cast a wide
net and hope it popped up in the first try; if not, then he’d keep narrowing
and narrowing until he found it. I found
this systematic problem-solving approach reassuring and I greatly appreciated
that I was yet another puzzle he was going to solve.
We started the process with the wide net, and that wasn’t a
match. I had imaging done. I had another appointment with more blood
draws and tests. Not a match. Yet another appointment with more blood draws
and tests. Not a match. At my fourth appointment, he told me that we
had eliminated out all the easy options and so it was time to talk a possible
blood cancer situation. I immediately
began my deep breathing to keep my mind in the game and listened intently to
everything he had to say. I was going to
do a bone marrow biopsy and he was looking for cancer.
My bone marrow biopsy occurred on 19 September 2018 and I
waited two weeks for the results. I
scheduled my “results” appointment with Dr. Wilkes to occur 1.5 hours before a
full day of parent-teacher conferences.
That probably wasn’t the best professional move I’ve ever made, but I
certainly didn’t want to wait any longer than I needed to get a definite yes or
no on the cancer situation. On October 4th,
I checked into the Cancer Care office and hoped, hoped, hoped that I didn’t have
cancer. Dr. Wilkes walked in without a
smile on his face and my hopes sank. His
face was emotionally flat; it had to be the face he used when delivering bad
news to patients. He told me straight: I
didn’t have cancer. I burst into happy
tears because I was just so relieved and then I realized Dr. Wilkes was not
celebrating with me. I looked closer at
him, saw that his expression had not changed, and my stomach sank again. He then shared my actual diagnosis of
indolent systemic mastocytosis. I
remember struggling to wrap my brain around this condition, because it has a
spectrum of severity with the most severe being a type of cancer with a near
100% mortality rate. He kept reassuring
me that I didn’t have cancer, which was a significant relief but, since the
condition is a rare disease, he had never treated someone with the condition
before and he didn’t know how to predict what my future would look like.
I walked away from that appointment with a condition I could
google, a prescription for an epi-pen I should carry at all times, instructions
to get a medical alert bracelet, and with more medical tests scheduled on my
calendar. Next up: a CT scan and a DEXA bone density scan. Systemic mastocytosis is a bone marrow /
blood disorder, in which my body keeps making warped mast cells instead of the
appropriate number of white blood cells I actually need. Those mast cells have to go somewhere and,
depending on their location choice in my body, my disease complication level might
increase.
The CT scan showed that my mast cells were not targeting
organs yet. My bone density scan – a
test normally given to women 65 years and older! – showed that I was within
normal parameters but close to being in the osteopenia range. I immediately upped my calcium pill intake
and doubled-down on my weight-training regimen.
I wanted stronger bones!
I spent the next few months reading everything I could on
mastocytosis and mast cell disorders.
The more I read the more horrified I became, because there are so many
people who are truly suffering from this condition and I became fearful that my
condition would worsen to their levels.
Dr. Wilkes encouraged me to keep a food diary and try to
track if certain foods affected me by flushing, swelling, heartburn, etc. From June to present day I’ve been on an
elimination diet, in which I eliminated everything I thought might be a trigger
and slowly reintroduced items to see if I had a reaction. Initial conclusions: My body has poor
reactions to dairy and sugar in its non-natural forms. I don’t react to apples, but I do to apple
pie, for instance. As a result, I’ve
eliminated sweet items like cookies, cakes, donuts, chocolate, and jelly from
my diet. I’m currently trying to
determine whether bread is a trigger; signs are pointing to yes, but not as
severe of a trigger as sugar. Alcohol immediately
causes a reaction – that one is so extreme that I react when breathing the red
wine fumes from other people’s wine glasses!
I haven’t figured everything out yet, but I do feel so much better since
eliminating sugar from my life. The more
I learn the better I hope to feel in the long run.
Other medical items of note include being diagnosed with
hypothyroidism and having three surgeries in the space of two months: IUD
removal, hysteroscopy, skin cancer removal, and facial repair to do the
previous surgery. I’ve learned that my
mast cells really do not like my body to be in stressful situations. Painful GI responses join the joint
inflammation fun! In the weeks
post-surgery anything I ate caused immediate and prolonged heartburn (a
condition I had experienced only one time prior, due to a stressful launch of a
fundraising campaign I was chairing). I
learned to love matzo and applesauce. 😊 Also, it’s a Whompton mantra that drinking
water fixes most problems and, not surprisingly, drinking more water
substantially helped me flush out the anesthesia and recover faster post
surgeries. The quicker I can do that the
quicker my mast cells calm down and the quicker I feel normal again.
On the positive side, I have learned so much about myself
and my health, I’ve not had to use my epipen yet, my joint pain is considerably
lessened now compared to 1.5 years ago, and I can better anticipate how to
preserve those positive trends. Today is International Mastocytosis and Mast Cell Disease Day and, right now, I’m
feeling so very grateful to be in "good" health.
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