Yesterday marked two months of taking the chemo therapy, Sirolimus. Seeming like we had just made the trip to Children’s Hospital in Cincinnati, Mom and I embarked on yet another early morning drive. (And that was sarcasm…we literally had done the same routine on Friday morning for my MRI.) The only differences were (1) traffic–yesterday reminded me of why I don’t miss city driving; and (2) Friday I could drink coffee on the drive down–I could yesterday but not until after my lab work was drawn. I am very thankful for my Mom’s driving as I would have never made it on my own yesterday morning.
Yesterday’s appointment covered a LOT of things. We discussed my walking and balance, PT and OT therapy, the need for ankle braces, driving and safety, better communication methods for me between the team of doctors, and a few fun things like my paintings. 🙂 My initial intent was, as always, to blog the details and keep you informed on the latest like a news anchor, but I don’t think that it is best to do that this time. Everything is changing and more appointments are appearing; I will just blog as it comes.
Tonight I begin with my MRI results: I went to the appointment with a neutral emotion. A few weeks ago, under frustration, my thoughts were that if the tumors had grown more in the brain, then I would just want to stop the chemo. I don’t know where the attitude changed, but I realized last week that I found myself thinking differently. I reasoned that maybe two months was not long enough time for the medicine to have a chance, so regardless of the MRI results, I was fine with continuing the treatments. However, I didn’t want to be a pessimist, but because I have experienced continuing downside side effects, especially in my right hand, balance and right ear, I assumed the scans would show growth.
I assumed wrong. The MRI showed stable in the brain. 🙂 I still could be experiencing hearing loss and physical side effects from the tumors but that is where it gets tricky, because MRI scans only show growth, not density (if the tumors harden they squeeze more on the nerve)…but since there is no way to calculate this, I will just take the good news: there was no change. What a praise and answer to prayer! Two months ago I saw nothing but growth.
Overall, the MRI of the spine looked stable too. I learned something though; instances such as this amaze me at how much I seem to miss…then when I learn about it, my curiosity comes out as a weird question, “I have that??” It seems to happen more often than not…I seriously should do more study on my disease. Anyway, what I learned yesterday is that the tumor that grows in the spinal cord from C-4 to C-7 area has cysts resting on top and on bottom of the tumor. I never knew this. While the tumor has not grown any nor the bottom cyst, there was more fluid in the cyst on top of the tumor. They don’t know where the extra fluid comes from, but the cyst now rests in the brainstem.
They showed me the scan and the top cyst appears to be “ballooning” from the extra fluid (it literally looks like one too). It took me time to understand this effect of the cysts being like balloons, but basically it is like holding a water balloon and squeezing one end so that the other gets bigger. I asked if the extra fluid could be from the tumors in the brain that were growing…just maybe added pressure, but doctors were not sure.
Besides the physical challenges I typically blog about, the thought occurred to me that because this cyst is now in my brainstem, I should probably have more headaches (but I don’t have any) and more neck pain but that is minimal too. I could have a big list of side effects from the chemo, but so far I have only experienced a minimal few. I will remain on the chemo for another two months, then another MRI. Then go from there.
As my parents helped me today with the phone calls for the next step appointments, I thought of how I am surrounded: I have a circle of doctors who want the best for me, a family that sacrifices their agendas for me, friends who encourage me, prayer warriors who faithfully pray for me, and a mighty God who holds me in His hands. Changes are going to come and I am not the best at shifting gears…but as my Mom told me tonight, “You have to be flexible with this.” So as the calendar starts to overflow with different appointments over the next few weeks, I think I should just drop my expectations of how and when things should be done and just let God write in the details. It will make this complicated chaos more livable.
May all your expectations be frustrated.
May all your plans be thwarted.
May all of your desires be withered into nothingness,
that you may experience the powerlessness and poverty of a child
and sing and dance
in the Love of God the Father, the Son and the Spirit.
~Blessing given to Henri Nouwen by his spiritual mentor
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My Life with NF2 