It's been a long time since I've posted. Longer then I intended. I've thought of it many times but was a little afraid of what I would be post.
These past 4 weeks have been some of the hardest of my life. My emotions have been very raw. I think our whole family has been a bit depressed. I've been a bit "Cancer Cranky". Although life has not suddenly gotten rosy, I feel like I am in a place where I can post a sincere update with some discernment. :-)
The last scans were not good. To be honest, I was shocked! I felt so good. How could things not be good? But they weren't. The quick Dr. visit before my infusion turned into hours.
The lung tumor had a slight increase in growth. (We're talking mm.) everything else was stable and the liver even showed a reduction in tumor size, but the problem was that there were more brain mets. I tried to take it stoically but I was rattled to my core.
When Dr. Neal came in he gave both me and Lewis big hugs and said he was so sorry. He was surprised too, I think. He's really rooting for me, and spent a long time talking with us and even crying with us. I asked him how he deals with such pain each day? He admitted that he holds his kids a little tighter and cherishes his wife a bit more, and that it's hard. I'm so grateful for the guidance of God in handing us over to this Doctor who truly cares. I think I realized it for the first time this day. He was even reminding ME that I had told him where my hope lies. It was convicting, and beautiful, to have this reminder that God, holds me still, from my, oncologist.
They talked about cyber knife, and a clinical trial, and got me into the radiologist next door immediately. Dr. Gibbs, The radiologist said that I would also be seeing a neurosurgeon as they like to work together when dealing with the brain. Before anything was decided though she wanted to talk this over with the tumor board on Friday because there were a few spots that were not very solid looking, and questionable if they are more mets or not. She would call me and let me know how we were going to preceded.
I wasn't thrilled about radiation but thought cyber knife sounding better than full brain radiation
and losing my hair.
Lewis and I drove home stunned and teary. Things can sure change rather quickly. And they did.
The next day was our 10 year Anniversary. I couldn't stop crying long enough to even put make up on. We cancelled our dinner plans. Neither of us felt much like celebrating. I felt like I was back at that diagnoses week again, but worse. I knew now, a little bit more; most people diagnosed with what I have live around a year in a half. I was hopeful I would break that statistic and this news felt like doom on that dream.
The next day I had planned to go to the homeschool convention with my cousin, Summur, and
decided that's just what I needed so I didn't change those plans. It was just what I needed.
This was Friday, the day I was to get "the call". It came while I was still at the convention. Dr.
Gibbs must have called the minute the tumor board meeting was over. She said there were more brain mets than they thought. To many to cyber knife. Full brain radiation was the suggestion. But my Onc, Dr. Neal had plans of postponing that as far into the future as he could. He suggested the pulse dose of Tarceva; take a full weeks worth on one day and then do the same the the following weeks. This helps the Tarceva get into the brain better and hopefully will help control those brain mets.
The convention was over for me at that point. All of a sudden I was very tired. Summur and I finished up and headed out.
The first week of the pulse dose wasn't so bad so they upped it to 900 mg. I started feeling pretty crummy Tuesday-Friday, and the cough came back after about a week of starting this pulse dose. I'm not a huge fan of how this pulse dose makes me feel but if it's working it's totally worth it.
Fast forward now to yesterday. Lewie and I went to Stanford to talk treatment options with Dr. Neal. In the mean time I started looking at many options other than conventional, and praying for wisdom and direction. We had some life changing decisions to make, but I wasn't worried. I felt resolutely that God would make the decision clear. As we arrived at the Cancer Center I told Lewis that I felt at Peace. I also felt very neutral on each option laid before us.
We discussed various treatments and possible reasons for the cough returning. Dr. Neal felt Chemo was the next best option but also knew that I had made it no secret about my dislike of that plan. As we talked about the options, he proposed that we continue with the pulse dose for the next
two weeks and then scan everything again. Depending on what the scan reveals, we either continue
with the pulse dose or begin Chemo, THAT DAY! We discussed many thing and many options. This option seemed very clear to me. This is what I picked. And I'm at peace. So chemo is scheduled for September 3, and I'm pretty sure I'm going to need it with the way I'm feeling.
Although we have somewhat of a plan, when you're living with Cancer, a lot can change in 2 weeks. I'm learning that the only plan is to take one day at a time. Not to look to far into the future or try to guess what's in it. The plan is to live. Live today. Tomorrow may be a different story, but we have today. So don't think to much on tomorrow. Being a "planner" this is not an easy lesson I'm
learning. I like to know what's coming. Maybe this time, it's best I don't know.
Daily I have to give the day to God, and purposefully choose to be grateful for it. When I wake up I lay there and make the choice , or don't, those aren't very good days. The "don't" days. The "good choice" days aren't full of happiness and giggles though. They have lots of tears too, but also hope, strength, and beautiful peace.
God has orchestrated and organized so many things in my life with out my worrying and stressing about it. School this year was heavy on my heart the day we got the bad scan. Before that, I
felt like I would feel up to teaching, but now the coming weeks and months were completely uncertain and unpredictable. The original plan had to change but the details fell into place beautifully. I felt again the clear direction to home school our kids this coming year. God made it possible and He will make it successful. He is so faithful! I think I'm going to still get to be part of this school year, but if I'm unable, school will go on. Although I don't know what's coming (chemo or not, how sick I'll be...etc.) He does, and He's already on it, making provision.
I like to choose a theme verse for our school year. This year I chose Isaiah 41:10 "Fear not, for I am with you. Be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand." Fear not! Why? Because I, your God, AM WITH YOU! Not just with you, but will HELP you and will STRENGTHEN you.
Someone prayed for me this week and the prayer touched me deeply. Miraculous Healing was on the list, but my favorite was "for her strength and encouragement". I have been at a loss in the past weeks how to answer when asked " how can I specifically pray for you?". I feel tongue tied. There is so much and yet I can't zero in on one thing. This should be my answer, "for my strength and encouragement". Because this isn't something you get, and then have to keep. Every day requires a new dose of it.
My sister, Tena gave me a necklace last week with 2 Timothy 4:17 "but The Lord stood with me, and gave me strength." That's all that's on the necklace but the verse goes on to say, "so that the message might be preached fully through me..." I love the necklace, and it reminds me of whom my strength is in, but when I read the whole verse I remembered also why God gives it. Because I still have a job to do, a purpose. He's not through with me yet. So please pray for my strength, and my encouragement, so that the message might be preached fully through me.
