Today marks the first day of my cancer-blogging journey. I have never been one to publish my thoughts (aside from 40 character tweet limits and random status-worthy Facebook posts), so this is new to me and I will make it how I want it. There are no rules for me to follow, just an open canvas to share my battle as I Mohammad Ali this beast.
I have been out of work since May 20th. It hasn't even been one month but I feel like it has been forever. I miss my work family, I miss the routine. I love keeping my house clean, spending time with my snoozy pups, getting caught up on TV shows, and seek out ways to reduce stress in my daily life. I love that I don't make excuses to put off calling family or friends back anymore. Not that I was bad at that, but after a long day of work I would be selfish and not want to sit on the phone all night after having a busy day of constant stimuli and nonstop running around. I have already grown closer to family and friends and I couldn't be happier. I can't stress this enough. Support is everything. People ask me how I am so positive in this situation and all I can say is that it is because of the love, support, prayers, and positive vibes coming my way.
Now for the brainy business:
Today is June 16 and I am currently in a stand-still with treatment. I was originally scheduled to start radiation and chemotherapy on June 22, but due to the nature of my tumor typically growing on the spinal cord, I will be having an MRI in 2 weeks to ultimately determine my course of treatment. I had an MRI on my spine/brain/brain stem on Monday of this week and there was slight evidence that I could POTENTIALLY have Ependymoma on my spine, however, the evidence can also be seen in healthy patients and could have been on my spine due to my recent surgery. My radiation oncologist called me today and stated that it was decided at the tumor board meeting yesterday that the doctors would feel comfortable if we postponed treatment until we have a final MRI in 2 weeks. At that point, we will see if the areas that 'lit up' on the spine MRI have decreased meaning we can rule out tumor growth and will treat based on the original plan, but if the areas remain or grow enough where the doctors believe Ependymoma does exist, I will have another planning session with radiology and we will move forward with treating both the brain and spinal cord. Again, I am trying to remain positive and think that my spinal cord is in good shape and we only need to treat the brain. However, I am comfortable with the course of action right now because to take care of it, we need to do it right. No reason to get started and learn down the road we missed some spots that require treatment, at which point I would essentially need to start all over on yet another body part.
My radiation will be Monday-Fridays for 6 weeks at 7 am at Henry Ford Detroit, and I will be taking chemotherapy capsules 7 days a week throughout the radiation, and possibly 6 months following the radiation on a 5 day on, 28 day off schedule. The radiation will cause more side effects than the chemotherapy, based on my understanding. I am anticipating losing my hair in the front where the rays beam. I am getting my hair cut this weekend to prepare - not too short but a few inches off so that if and when I start losing my hair I don't look entirely like Bret Michaels. I also received some Rogaine for women from a very nice human I met on a Facebook tumor forum. Turns out she lives 4 minutes away - walking! How great to have support so close to home.
Now, as I wait, I will continue to take care of my house, work on my crafting skills, helping my beautiful sister plan her baby shower, go for walks with my pups, soak up the sun, work on getting my short term disability all set, see if I can defer my student loans for a few months while income is limited, call my bank to discuss their sweet offer to lower my auto loan interest rate, complete my cousin's graduation party picture boards, learn how to do the laundry, figure out how to make my boyfriend's 30th birthday unforgettable, make him breakfast and lunch everyday, and live my life how I want to while I can. Seems like a lot, but I am happy with it all.
I will do my best to update this blog on a regular basis. I don't know how many updates I will have specific to my condition until I start treatment, but I will continue to document what's going on in my wild and crazy Ferndale world, how I feel, what I have accomplished, and whatever else I can think of. Some of it may be interesting to all, some may not. If it's interesting to me, I will write about it and it's up to you if you want to read it.
I appreciate each and everyone of you who took the time to read my inaugural post, and who continue to return for tumor talk. You are the reason I wake up with a smile on my face and why I am a strong ass fighter right now, and will continue to be. Please continue sending positive vibes my way, I can feel them coming from all directions.
XOXO
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