Treatment Plan and Chemotherapy Mountains

Yesterday was March 12th, a year ago I was admitted to the ICU for an emergency brain surgery and subsequently diagnosed with brain cancer. It’s crazy how one day can change your life forever. If someone were to tell me on March 11th what I’d have to go through over the next year I’d be terrified, but strength is something you find day by day, moment by moment. I do not always feel strong but I trust myself to find my strength when I need it.

Breaking down is part of the process of going through. The unknowns that come with first appointments or new information can be hard to digest but cancer has taught me how capable I am of adapting, overcoming, and enduring.

Two weeks ago during my first fertility appointment, I was so overwhelmed and intimidated with the fertility process.  The doctor had a sense of urgency in my treatment that scared me.  I was afraid to give myself shots, I felt inadequate, and I worried I would fail.  That night of the consult I ran the water in the bath and cried my eyes out. I let myself feel sorry for myself for a night, but the next day I went to the clinic and learned how to give myself shots. I watched videos, I read about fertility treatments and I just figured it out. I spoke with people that have been through it and I found courage.  I have 2-3 days left of this treatment and I’m genuinely proud of myself for pushing through despite the fear. I did something new and challenging for a dream I care deeply about and while I wish I never had to do it I’m grateful for the experience. Getting to the top of this mountain allowed me to take in the view of the next one.

Last Thursday, I had my long-awaited meeting with my medical oncologist to discuss the rest of my treatment plan. It was a long day that began with a headache and a two-hour wait for the doctor. I knew it was going to be a hard appointment before he got there, I could feel it in the pit of my stomach. The doctor was empathetic and did a good job checking in with me — I email him updates regularly and he usually responds the same day which I think is pretty amazing. He was already caught up with me, but none the less he patiently listened while I retold him my stories. Eventually, we had to talk about what comes next– which includes two weeks of radiation, 6-8 weeks of a pill form of chemotherapy, and then a transition into an IV chemotherapy cocktail.

The pill form of chemotherapy is called Temodar. It is commonly used for brain cancers and synergizes with radiation for an enhanced effect. This treatment has few side effects and is generally well tolerated.

IV chemotherapy is a combination of two drugs ifosfamide and doxorubicin commonly used for sarcomas and has lots of scary side effects discussed below.

I knew most of the treatment plan before I went to the appointment. What I did not know was the details of this particular IV “chemo cocktail”. I did not know treatment would be three or four months long and could not even start until May. I did not know the risk factors include things like possibly losing all of your bone marrow, developing secondary cancer, heart damage, life-threatening infections, losing your immune system, and of course hair loss. I did not grasp that the treatment would mean spending 5 days admitted inpatient at Hopkins with two-week breaks to recover and then repeat 3-4 times.

My mind immediately went to all the things I would miss out on this summer and the fact that I wouldn’t be able to go back to living my normal life until August or September and my eyes began to swell with tears. Digesting the information and rearranging my expectations is always hard. Deep down I know treatment is something I get to do because my prognosis is still good and I thank God for that every night. It sucks having to go through all this but I’m grateful I have the option to.

This is the first aspect of treatment that is not an obvious “yes, of course, I should do this” for me. These drugs are essentially poison and I do not have a systemic disease making them absolutely necessary for survival at this point in time. My disease is so rare it lacks any good research or an evidenced-based protocol to help with decision making– most of my treatment is based on combing aspects sarcoma research and brain cancer research.   Surgery and radiation are local treatments, while they carry dangerous risk factors they were unanimously agreed upon by all of my doctors.  They left the rest of my body relatively unharmed while providing a larger benefit for eradicating my cancer.

Chemotherapy is like my third-string quarterback and I’m not so sure it’s time to bring him out or that he’ll do much even if I put him in–in fact, there is a real fear he might just make a mess of things. But my doctor and the neuro-oncology team at Hopkins do think it’s time to play him and I am inclined to trust them. My doctor explained that the recurrence of my cancer within a year makes another recurrence more likely and suggests the need for better local control. He explained that while there is no good place for a sarcoma the brain is an especially bad place for one.  He said that the best time to treat cancer is when there is very little of it left. So while I still plan to do some more research and get a few other opinions, I am leaning heavily towards going all in with this fight. It will be a hard summer but I will adjust, adapt, and overcome this mountain too and when I do, I will look back and know how much stronger I am for the climb.

Stacy, Stephen sent you a hug.
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Welcome Amy. I am so sorry you must go through this treacherous treatment but it's better than the alternative. One step at a time, you can and will do this. It sounds like you have a wonderful team of doctors that listen to you and are invested in your success. How lucky to be getting treatment at Johns Hopkins, do you live near by. You are really a good writer and have described your thoughts and experiences quite authentically.

I am sending positive vibes and energy your way. Please keep us posted. There are a wonderful group of followers here with a wealth of experience dealing with chemotherapy, drugs, side effects and the emotional ups and downs of treatment. Remember most people do not get all the side effects and you might luck out on many.
I don't know much about brain cancer but I know more about sarcoma. It would seem to me that having sarcoma of the brain has a much better outcome than, say, a glioblastoma. And yes, since it doesn't grow like outspread fingers, a surgeon has a much much less tough time in getting good margins. You are wise to not get upset. That does no good, though it's completely understandable when folks do go there; it's just not a favorable stance. God bless.
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Vital Info


March 13, 2019

Cancer Info


Primary Brain Sarcoma

March 12, 2018


John Hopkins


Headaches and everything treatment brings

2 craniotomies

Temodar and potentially IV Chemotherapy

Proton radiation


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