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Radiation; the Monster

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Stable. Not exactly the word I was hoping to hear during my three-month follow-up with Dr. Klineberg.

As Dr Klineberg,my radiation oncologist, at Johns Hopkins Hospital, explained the classification ‘stable’ is good thing when it comes to monitoring the growth and impact on a tumor following radiation treatments.  I was certainly hoping for something more substantial. Perhaps even something celebratory. It would feel far more rewarding to hear that the tumor was ‘gone’, ‘dead’ or even ‘vanished’, but given that plain ‘ole ‘stable’ is good, I’ll gladly take it.

With the MRI behind us and the tumor’s measurements recorded, we moved along to discussing my bloodwork and how I’ve felt post-radiation. It was expected that this three-month check up with the oncologist would confirm what my endocrinology team diagnosed through blood tests – that being that the tumor was now badly damaged and its growth hormone production significantly slowed.  That was the goal of the treatment and indeed this is good news.

It was also confirmed that since my body is highly susceptible to radiation, the impact of the treatments is much further along than anyone on my care team anticipated at this early stage. This is why no one expected me to feel as miserable as I was feeling up until a week or so ago. I guess when it comes to things that are rare – like rare diseases such as acromegaly – my body thrives.  Just like how it reacted quickly, and in rare form to the radiation. Dr. K reiterated that typically, the impact of the treatment takes time. Results are expected to take at least a year. If not two or three. In my case, and catching my entire clinical care team off guard, my body responded in a mere 90 days.

This is a good thing. Fortunately, my team prescribed stereotactic radiosurgery as the ideal method to target the fragments of my pituitary tumor as it is delivered radiation in small, strategically targeted doses on a daily basis over the course of several days. By doing this the damage to the areas surrounding the tumor were less likely to sustain damage throughout the process. My eyesight remains excellent. I have not lost a sense of smell or taste and with continued work at the gym, my balance is better than ever. It turns out my pituitary itself isn’t in the best of condition.

We knew this was a possibility going into it. Now I focus on dealing with the reality. Having sustained damage during the surgery to remove the pituitary tumor in 2014, it makes sense that my pituitary is no longer strong enough to produce the necessary hormones my body needs to survive.

Dr Klienberg confirmed that the additional pituitary damage is due to the radiation. He added, as both Dr. Wand and Dr. West had, that both hypothyroidism and adrenal insufficiency were likely lifelong conditions.

Unless, of course, my body has the rare ability to miraculously repair my damaged pituitary gland. And, for today at least that’s what I’m going to choose to believe.

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