Trials…that appears to be the theme of the day. From talking about it during counseling this morning, studying about it in my Bible Study on James mid morning and then this week’s AWANA section too! As I said Luke 22:41-42 over and over and over with Ashley to help her memorize it….Jesus asked God to remove the trial if He was willing, but only if it was His will.
Luke 22:41-42 “And He withdrew from them about a stone’s throw, and He knelt down and began to pray, saying, “Father, if You are willing, remove this cup from Me; yet not My will, but Yours be done.”
That’s hard to say. I want the Lord’s will for my life and for my family.
This trial is big and isn’t going away. Not only is it not going away, it is getting harder. I have to look at it from a heavenly perspective or I can’t get out of bed. Why is that so much easier said than done?
Yesterday I had a few appointments at Valley. Linda went with me as Tom was in Portland for work. We started off at the radiation oncologist’s office. Tom and I decided to meet with him and see his thoughts….was radiation really necessary? The short answer – yes.
He showed me the scan of C2. In the scan the bone is almost all white. Then he showed me a healthy bone – very little white. Ugh. So I will be doing radiation for 10 days to C2 to hopefully kill the cancer in that one spot and help the pain. We hope that the new chemo pill will kill the cancer, but that will take more time IF it does work and we are concerned about my neck pain continuing to get worse.
The bad news – guess what’s on the front side of C2? The back of my throat. So remember those fun 2 weeks in November of the worst pain I have ever had and struggling to drink anything? Horray! I get to enjoy that again. The good news is that we are prepared for it this time. The bad news is that it is so horrible I can’t even think about it without crying.
After that fun Dr. appointment, we walked over to the oncologist’s office to get some blood drawn and I asked if Dr. Leung could squeeze me in right then. He did and I verified that I really needed to have it done. I do.
I know that at any time I can decline treatment. However, neck pain and not being able to turn my head will impact my ability to drive pretty quickly. Not being able to drive is a HUGE strain on our family. It’s a horrible decision to have to make.
While we were in the office, he briefly showed me the new scans beside the old one. That was pretty discouraging. We’ll look at them more closely on Tuesday when Tom is with me for the appointment. There were quite a few new spots all over and a few were quite a bit larger.
I’ve taken 2 half doses of the new chemo pill and will go up to the full dose Friday evening with dinner. Today I was tired and had a little nausea and a funny taste in my mouth. We’ll see what the next few days are like. The oncologist said it was fine to start the new chemo pill and do radiation at the same time, as the radiation side effects won’t kick in ’til it’s over and hopefully by then we’ll have figured out the chemo side effects.
Both doctors believe the swelling and pain in my hand and wrist are lymphoedema from having lymph nodes removed. I always assumed lymphoedema would start up at the top of my arm where there lymph nodes were removed. Nope. It starts down at the hand and moves up. Good to know. I’ll be making a physical therapy appointment to learn how to massage that and help it drain. It’s not too bad right now, so I’m going to hold off until I know when my radiation appointments will be before making that appointment.
Tomorrow, Thursday, at 11 am, I have some measurements done for radiation. Apparently this time I don’t get tattoos to help them line me up on the machine. Instead I get a mask that straps my head down to the table. That sounds pleasant. 🙂
In case you are wondering how Tom and I are doing, the answer is not well. If you ask me how I’m doing and I tell you I’m fine, just know that I’m not really fine. That’s just my way of saying I don’t want to talk about it. It is only by the grace of God that we are functioning right now. I feel like I am walking around (or sitting around) in a daze. This disease is consuming and I have no life outside of it right now. I hate that. I want to travel and escape from it all. Instead I’ll drive to radiation every day.
There’s a chance it will not always be like this, if the medicine works. If not, it will get worse. That’s a very hard reality to live with.
It’s really hard to keep fighting.
People tell me that I’m strong.
I just take one moment at a time. I talk to God a lot. I cry a lot.
In addition to fighting for my life, I have to be a mom. IT’S SO HARD TO BE A PARENT THROUGH ALL OF THIS. Yes, our kids are on their devices way too much. Yes, they are eating too much junk food. Yes some of them are not getting their homework done. Yes I’ve had to ask a child to stop talking because my brain was too full to process anything else. And yes I feel like a failure as a parent. I know I am not. I’m not beating myself up about it. I just don’t like it. I don’t have the energy or the strength to do anything else right now. So that’s where we are at. It might get better….or it might get worse.
In other news, Tom got dismissed from jury duty today because of my cancer. 🙂 Yay for some piece of good news this week.
Tom and I continue to have really hard talks about the future – not knowing if what we are discussing will need to happen in a few weeks, months or years. At the end of each discussion, I usually tell him how sorry I am for all of this, with tears in my eyes. I know I didn’t choose this and am not going through this on purpose. But what we are dealing with is because of me. It’s the truth, and I feel so bad about that. I don’t want to see him hurting because of me – even though it it out of my control. It feels horrible. Whether or not it’s the right thing to feel, I feel it.
Thanks for all of the comments on the blog. I’m sorry I don’t respond to each of them any more. Please know that I do read them and please don’t stop. Thank you for all the text messages and for understanding if I just respond with a heart. Thank you for praying for and loving our family through all of this. Thanks for not abandoning us. I’m sure it’s not easy as a friend or parent to call or text and always hear something negative or sad right now. I wish it wasn’t that way. Thanks for continuing to check in and thanks for not forgetting about us.