Yesterday marked one month of taking the chemo treatment, Sirolimus. Because it was the end of my first 28 day cycle of the drug, Mom and I headed down to Children’s for a doctor’s appointment. It ended up taking all afternoon.
It is strange. This time around it is as if I am indifferent as to what comes next. In discussing the issues at hand, I made my point clear about what direction I wanted to take in terms of treatment time without much else running through my mind. My doctor asked me if I wanted to continue. I simply said that I would for one more month until the MRI. If I stop now then how will I know if the treatments have been given a chance to maybe show something positive on the next MRI? He agreed that one month more is a good decision.
My indifference comes in part, however, because I also mentioned that I would not be surprised if the scans reflected negatively–based on the amount of physical changes I have had over even just this past month. More wobbly balance, weaker right ankle, extreme numbness in right hand, and hearing loss in the right ear. From the time I bought the Phonak Cros to the time it arrived, I had lost hearing in the right ear and I believe I still am. I returned the Cros last week, but I am satisfied with my choice to do so and glad I at least gave the device a trial run.
It is hard to decipher what is causing what problems. Since I started the treatment, I have had more problems with my intestines…but it is hard to point a finger only at the Sirolimus when I have also had an increase of pressure from the tumors there at the lower spine. Every physical problem seems to get tangled around an “unknown source” linked to the problem. Of course we all know that the “unknown source” is a tumor, but which one? That is the question. And I think that is why I just left all emotions yesterday. I have no control over what happens over the next month. Tumors may or may not be growing; even if they do not show change in size, they can change in density and still cause side effects. So I just let myself become void of it all.
I was quiet on the way home. I was not even thinking much about the appointment. I was thinking more about the conversation my dad and I had a few nights prior. We were discussing my walking, weak ankles, my muscles and bones, and my shoes. If you don’t remember, I have a knack for cute shoes. To me, they complete the outfit. As Dad and I were talking, what he was saying made sense: I do need sturdy shoes as now my bones are thinning and weakening and my balance is only so-so. I wear good shoes for a majority of the time, but I like to wear a cute pair of slip on shoes if I am going out to church or to a coffee shop and I like to go barefoot when I can at home. It might be time to rethink that latter part–is what Dad and I discussed.
In my distress of our shoe conversation (serious…giving up my shoes!?!), Dad told me that I should not worry about my shoes, because I am fashionable with my accessories, like scarves and bracelets. I thought that was a nice complement. I talked with my doctor about the shoes and what Dad said when we were discussing my feet. “I agree with him 100%,” (referring to the sturdy shoe notion.) So on the way home, half lamenting and half planning what to do with my shoes, I just let my mind wander. All over shoes.
We get home and Dad asks how the appointment went. “It was long.” That is all I said. Then I made tea. I finally started talking about the appointment (even though my mind was still on my shoes) and just gave a two sentence overview of the plan–get my intestines feeling better and go one more month to the MRI. Everything past that is dependent on the results. I think I was still indifferent to it all. Being an emotional person, to not feel emotion is weird. Maybe indifference is a slight emotion…or at least triggers one of self-pity. Whatever the case, I had it last night. I could tell: I ate a huge chunk of fudge and watched a movie. Then I just went to bed.
As I was turning off my light, I flipped through some flashcards of verses that my mom made me while in college. One read, “But He knows the way I take; When He has tried me, I shall come forth as gold,” Job 23:10. In one day, Job lost everything: his children, livestock, servants, property, wealth…and yet he still chose to say, “The Lord gave, and the Lord has taken away; blessed be the name of the Lord,” Job 1:21b.
I admit, there are times when it is not easy to say, “Blessed be the name of the Lord,” especially when I feel that things are being taken from me–whether they pertain to my physical body or to my possessions. But remaining indifferent to the road ahead will only make the journey more tiring. Choosing a life of praise is a better path to travel.
“If God sends us on strong paths, we are provided strong shoes.”
Corrie ten Boom
My Life with NF2 
You, my dear, are in my thoughts and prayers. So happy I found your blog and can follow your progress. Your journey is a difficult one. Keep writing and sharing…may I do the same? Write to you as I can?
Hello! 🙂 Yes, I will keep writing and sharing! And I would love to hear from you too. You can also contact me through the “Contact me” tab at the top of the blog page next to the “I like” tab. It sends your message direct to my email.
I am glad you are choosing praise! I’m praying for you…always.
Thank you for praying Liz. All the prayers are a blessing to me. Another reason why I can choose praise. 🙂
Thank you for encouraging US to remain faithful in praise! So sorry for your discomfort, Mel! I won’t pretend to understand, but I will sure pray! Much love to you, friend!
Thank you for keeping me in your prayers Tracy! I don’t understand it either but I guess admitting that is sometimes the best place to be in faith. I read this quote the other night and had to look at it twice thinking I read it wrong: “God will take care of everything–the rest is up to you.” ~Lisa Welchel. 🙂
I am always amazed by you Mel. You are a beautiful person.
Thanks Rachel. I have this pair of flats with pointy toe ends and they remind me of you and what you would wear. 🙂
Praying for you. I do think you could decorate your sturdy shoes!!! Use a marker, use stickers, use felt cut out into flowers (glue them on), use your imagination!!!!! Continuing to Praise HIM for how you shine full of His love!!
Well I did decorate my tennis shoes with the curly no-tie shoe laces. One-of-a-kind right there. 🙂 My other sturdy shoes for the summer are the REI looking trek mountain sandals, so I don’t have to wear socks. I don’t think they look bad but just not very cute with skirts. 😉
Your story about shoes made me laugh out loud! I love shoes, also. Must be a family trait!
Must be! Melissa has it too. And we always chat with Grandma when she is here about shoes. Yep…clearly flows in the blood. 😉
Aunt Tanis and Melinda, I think it must run in the blood, as we all do love shoes! 🙂 They are so darling. 🙂 Melinda, I am sorry things are getting so much harder for you these days. It hurts my heart to see you struggle. But I love you and I am so proud of you. Keep fighting! Life is beautiful. xoxoxox See you Friday!
Life is beautiful. 🙂 I like that. I think I will write that on my bathroom mirror!
We had a lady today come and chat with us about different things–ideas that we need to look into for helping me live independent and safe while at the same time keeping the boundaries of family helping with certain needs and then drawing the line where I need assistance for other personal needs. That way it can keep the family just family in those cases. If that makes sense. Anyway, it was a good conversation. Now we can act accordingly to what I feel needs to come next. First thing on my list is a caption phone. 😀
Dear Melinda,
You are so right. I am praying for you along the way… ❤
Thanks Deborah!
Sweet sis ~ I’m left speechless *(almost) after reading this post….to hear everything you are experiencing – physically, emotionally, mentally, and spiritually is beyond my capacity to imagine how you passionately pursue life from day to day regardless. You have a magnificent award awaiting you in Heaven for persevering through all of this and continuing to give God all praise even amidst the trials, struggles, giving up of earthly possessions – ie: cutzie shoes, and indifferent emotions at times. I love you deeply and wish I could be there to give you a big hug right now! XOXO, Megs