Tag Archives: #cancersucks

Pocket full of sunshine

09 Thursday Mar 2017

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IMG_7649[4]One of the most frustrating aspects to dealing with a chronic illness is not having a very clear picture of what is going on with your body. Thoughts tend to filter through your head such as:

  • What does this all even mean?
  • What will the rest of my life look like?
  • How long will I survive?

For me, personally, wondering how long I have until I start treatment, or will I have to start treatment?

With chronic illness you are sometimes lucky enough to have these pockets of time when you can worry a little less and enjoy your life a little more. I have been lucky to experience some of these pockets, where things seem relatively normal and I can tune out the invasive testing and the uncertainty of progression. So lucky. Next month marks two years since my Smoldering Myeloma diagnosis, quite hard to believe! But the most recent pocket I was enjoying slightly closed after my last trip to NYC.

You may recall one of my last posts where my specialists at Mt. Sinai were trying to determine if I have a Myelodysplastic syndrome. The good news is I do not! But in a twist of events, one of the two blood tests to check for T-cell populations came back positive, which could be what’s contributing to my low white blood cells. We won’t know what this means until my next bone marrow biopsy, though so far I do know that the presence T-cell populations can sometimes indicate signs of a T-cell lymphoma. Yikes!

Both specialists that I see in the city were okay with keeping my biopsy scheduled for mid-June due to the lack on infections that I’ve experienced. After thinking it over the past month, I called and had the procedure moved up to May 5th. Sure I cringe at the thought of feeling like a human wine bottle being uncorked when that giant needle extracts both marrow and bone from my back end. The fact of the matter is the desire to have a clearer picture was just stronger than shying away from a biopsy for as long as possible.

So here we are, another waiting game, which will extend about two weeks past the procedure. One of the specialists will be checking to see how much plasma is currently taking over my marrow, and the other will be digging deeper into this unwelcome colony of T-cells. Hopefully the latter is nothing, but I am doing everything I can to be happy, healthy and trying to keep open that pocket I had created and filling it with sunshine in the meantime.

The Waiting Game

15 Sunday Jan 2017

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Last week I turned 33 years old – an occasion that was marked by celebrations in both Ithaca and NYC. In the events leading up to and on my birthday, I was surrounded by amazing people and had wonderful times. My mood was great! Here I was another year older and still no required treatment for Myeloma. I was scheduled for my sixth month check in at Mt. Sinai two days after my birthday. When traveling such great distances to spend half of a day getting labs, waiting to be seen, and meeting with my doctor regarding unpleasant topics such as cancer, I try to always build something fun into the trip.

For this trip to NYC not only did J come along, but we planned to make it a weekend long post-birthday trip with another couple that we have been so fortunate to have in our lives. I was anxious to get the usual, “Myeloma is stable, immunity is still low but you can live a normal life this way under careful monitoring” response I usually receive, and we would be then be free to paint the town red. Except my appointment did not go quite as planned…

We spent five and a half hours at Mt. Sinai on Friday. We waited over an hour to get called back for labs, followed by another hour before meeting with the nurse practitioner, who was extremely helpful in explaining the status of my Myeloma. During this time we learned that the disease is still stable, but some of my labs had come back from earlier in the day and there was more cause for concern from my results. My neutrophils are the worst they have been to date. Currently they sit at 200 when normal counts are generally over 1,500. Throughout my time after diagnosis, this level has run relatively low, with some peaks here and there. As neutrophils are a type of white blood cell that aids the body in fighting off infections, there is always a scare that I could get sick and wind up in the hospital for something as common as the flu. The thought is that my body would be unable to go up against the illness. I have been lucky enough to have not had a major illnesses since 2013, and I believe my diet and lifestyle has helped me to achieve that.

But why are these neutrophil counts so low? It is not typical to see numbers in this range at the stage my cancer is in. So my specialist wanted to dig deeper. A doctor who specializes in Myelodysplastic syndromes (MDS, a form of disease that has a possibility of becoming Acute myeloid leukemia) was called over to the room we were in. More labs were drawn for a “fishing expedition” to see if there is anything to this new MDS theory. And now begins the waiting game. It could be up to three weeks before we find out if I in fact could have an additional disease on top of the Smoldering Myeloma. The Myeloma diagnosis is not in doubt. The presence of plasma in my bone marrow and the abnormal protein in my blood solidify that. The good news is it has not yet affected my calcium levels, renal function, or my bones, and I am not anemic. These four elements can show progression of the disease.

At this point I was told that these additional lab tests were just precautionary, that the tests are meant to rule other things out while I am still relatively healthy (rather than to find out the answers at a potentially later stage). Of course the hope is that the tests will come back negative, but my thoughts keep going back to February of 2015, when I had my first abnormal results from blood tests. I was referred to a Hemotologist/Oncologist and advised to not let the Oncologist part scare me, it was just to rule out bone marrow abnormalities they said. But, it turned out to be cancer.

A negative test result would be such a blessing as I cannot fathom having two diseases at the same time. But if I do not in fact have Myelodysplastic syndrome, then what on earth is going on with my body?! That first hour after leaving my specialist’s office I shut down, not really wanting to talk to anyone. I then slept for over an hour at our hotel, totally whipped from the day. But when I woke, I was determined to make the best of an awful day and set out to enjoy our weekend. We ended up having such a fantastic time in the city with the best company we could have asked for! And I am so fortunate to be under the care of top specialists who continually work to dig further to ensure that no stone is left unturned.

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