My Facebook friends have already commented on my question of what 5% means to them. Kevin and I are struggling with what 5% means to us, or more specifically Aly. On Wednesday, Aly is to start her 2nd phase of radiation. In the second phase they are targeting the original tumor site. Yesterday, I sat down with the doctor so he could discuss this part of the plan. Aly's tumor was in such a sensitive area you can imagine what the worries are in treating that area with radiation. Being a doctor, he obviously had to share the risks involved. Being a mother, I obviously can only focus on those nasty risks.
There is up to a 5% chance that this treatment could cause paralysis as it is so close to the brain stem. There is up to a 5% chance that it could affect her vision more or cause hearing loss. The hearing loss is seen more in patients that have had chemo that affects hearing, which Aly has not had, so that is less of a worry. Nonetheless, when he first said 5% I didn't really think anything about it. Then, as it sunk in and I started thinking more, (I wish I was a quicker thinker sometimes, so I could ask questions right away!) I began to worry more. If you think of 5% as 1 in 20 people does that change your perspective? 5 out of 100 does not seem too threatening does it? If the weather man was talking about a 5% chance of rain I'd put my swimsuit on and head to the beach! Maybe I'm overthinking this...maybe not.
I don't want to be put in charge of these life changing decisions. I know hindsight is 20/20. It is hard not thinking about the surgery she had to remove the tumor that lessened her vision again. I know they had to know what they were dealing with, but it is still hard thinking about the fact that there was no cancer in what they removed. I wonder what would've happened if...
Anyways, like usual I'm going off track here. All along they have been giving Aly the "standard" treatment for her type of tumor. This standard treatment is based on years of study groups done in the U.S. This treatment is showing a 90% cure rate when this course of treatment is completed. What they don't easily share is what happens if you stray off this path. I wish I could see into the future sometimes. This is a difficult thing to deal with, a very difficult decision to make. We want Aly to be cured of this horrid disease forever, but at the same time we want the best quality of life for her too. UGH! My brain has been on overload for too long.
Yesterday, they also pointed out the red (I call it a racing stripe) that now goes down Aly's back (down her spine). I hadn't noticed it yet. She is also having some reddening on her head. All side effects of the radiation, similar to a sunburn, but they told me it may take up to 6 months to go away. How many times have I said, "I hate this,"?
I asked Aly if I could put her "waffle" face on here, she wants to share and let people know what she's going through as well, so here it is. This is what the mask does to her face and the indentations last for about 2-3 hours afterwards...
I don't envy you these decisions but rest assured that any decision you make will be for the right reasons. There are so many things to think about - the side effects, the future of cancer treatment, the desire to be done - my oh my. You have been given many challenges and I guess they are not done yet. My prayers and blessings are with you, Kevin and Aly as you walk what seems a never ending road.
ReplyDeleteDear Aly,
ReplyDeleteYou may recall that I met you outside your next door neighbor's house a few months ago. I shared that I was so encouraged by Rene's comment about how courageous you've been in this battle you have going on. Thank you again for your perseverance. Keep going my sweet neighbor. By the way, an occassional hamberger can help great warriors like you.
Final thought. A great warrior like yourself was tasked to bring a group of people into the "Promised Land" His name was Joshua. He was very afraid. He had to face many enemies and to endure some challenging landscapes. God came to him and said, "Fear not for I"m always with. Be strong and couragous. I will never leave you nor forsake you. God said this three times. He also said to make sure that he meditate on his Word and to be sure to follow it. If you get a chance, the story is found in six book of the bible called Joshua chapter 1.
Praying for you dear.
Your neighbor and Friend
Scott Fitzgerald