Day 15 of Cycle 26 began pretty much as usual for a day 15 -- nothing major planned -- just blood work and a visit with the PA before going in the treatment room for a couple of hours to wait for my lab results and then for my drug for today and the next two weeks. However, the problems I have been having with my neck had not gotten much better, prompting my medical team to order an MRI, mainly to make sure there is no presence of cancer anywhere in my neck or brain. They hurriedly scheduled one for me at an imaging center a few blocks away, so we scurried off quickly after our day was over at the clinic. Because they were having to work me in, our wait was pretty long. Having had a headache all day, probably because of my neck pains, I didn't feel well going in for the MRI.
By the time it was done, I felt pretty much traumatized. Keeping my head motionless for an hour and fifteen minutes while in a harness was very hard for me. The inevitable itching and needing to shift intensified until it was over. My right shoulder began to hurt about twenty minutes into the procedure and worsened until the end. Then finally, it was over. Seriously, I'm thinking they may have to knock me out if they want to do another one in the future.
We were both very tired, and I was not feeling well at all, so we decided it would probably be best if we waited until Tuesday to drive home. We made a couple of phone calls and got checked into a nearby motel. Before our retirement, we were forced to go home regardless of how we felt, even after a hard day at the clinic, to be ready to go to work the next morning. Being retired affords us the flexibility to take an extra day for the trip if we need or want to.
After a restful night's sleep, we were preparing to check out when I received a call on my cell phone. We were a little alarmed that caller ID identified the caller as Elizabeth Diaz, my PA. We really didn't expect to hear anything from her until our next visit, or at least until we made it home. She said she had looked over the reports for the scans, and there was no evidence of cancer in either the brain or the neck. However, the problem in my neck was identified as a slipped disc (C5). It was quite a surprise. It's hard to imagine a slipped disc being good news, but we are so aware that the problem could have been much worse, so we will give thanks for that.
Cycle 27 Day 1 on LDE225 would be another CT Scan day. It seems that the eight-week period in between scans passes more quickly every time. Not long after we arrived at the clinic, we were met by some friends who had news for us -- our request to allow us to forego our mid-cycle visits was finally going to be approved! We have been going to San Antonio every other week for over two years. We may not be going back for four weeks?! Hard to imagine! Could it be true? Our research nurse confirmed it: our visits will be scheduled four weeks apart until further notice. All patients who make it to the six-month mark on this drug will only have to go in to the clinic every four weeks. We are excited and looking forward to the possibility of things slowing down a little.
Before we had time to celebrate that bit of news, as if we needed something to offset that, we were also told that our doctors (Drs. Monica and Alain Mita) were going to be leaving San Antonio and moving to California. My first thought at that was to wonder just how they were going to get us to California for our visits. When I found out they would be leaving in early September, I thought that it was nice that they were giving us a couple of months to find a house in LA. I am, of course, joking, but we really HATE the news. We have trusted these two doctors with our very lives for more than four years. They, especially Dr. Monica, have walked us through life-and-death decisions and have treated us with compassion and dignity through some of the most difficult days of our lives. We have grown to love them and now they will be leaving. So we are somewhat bummed about that.
If you have read many of my posts, I hope it is evident to you that our trust is in Jesus. Losing our doctors could leave us with a sense of loss and despair. We are really sad about it, but our hope is in God. Our future is and always has been in His hands. And although this has taken us by surprise, it has not snuck up on God. And His good plan for us has not changed. If I could have my way, I would do things differently; I would make the road smoother and more to my liking. But God's ways are higher and better, and His will for us is always driven by His unfailing love for us. So we will be thankful for that and continue to trust Him.
Not unimportantly, and quite remarkably, my scans showed no changes, no new growths -- stable disease! We can't thank God enough for His mercy and grace in our lives! Every positive report is another reason to celebrate. We are thankful!
God has been so good to us. He continues to be our All-in-All!
God Bless!
11 comments:
Thank you for taking time to write. Even though I don't reply often, your posts always bless me and I look forward to them.
As always we love you and you guys are continually in our prayers.
Lou
GOD IS GOOD - ALL THE TIME ! ! !
Hi Kenny & Helen,
Thanks for the update. I'm really sorry you have lost your trusted doctors. I do understand how we come to trust a doctor, and it is a big loss when they are not there anymore. But, God will take care of that too.
I am so happy that y'all won't have to go so often for checkups, now!!! That has to feel sooo good to you.
We love you, and we pray for you.
Virginia & Lloyd
kenny and helen, since i no longer have computer at home, i haven't been keeping up with your blog. just today i put it on my desktop at work. i have some catch up reading to do and i'm looking forward to it. u know i love u both and i continuously pray for your situations. always here for u, debi
i've been reading your blog. i went way back 4 or 5 months ago and it's like a really uplifting time...very inspiring. love u guys, debi
We are so happy to read the good news of your progress.It is wonderful that you dont have to go back every 2 weeks but can now have longer at home in between visits. I can really understand your feeling of loss with your 2 Doctors leaving. That is very hard on you both.
I want to assure you of our continued prayers. Our God is so faithful and merciful. He is great.
love and prayers, Jeanette and Hector
roller coasters ya'll have been on many and here is another. It is soo awsome to see Gods plan and it most often not the path we would have chosen if we did not believe and not have a father to make these decisions for us. This new one will be awsome since he always gives more than we ask for. You two are such servants and our admiration for you and your family is never failing. You do not realize how much you have helped us all. God Bless you and Love you bunches!
Bud and Beth
Wow! You guys are such an inspiration for me.
We miss you guys, delma
Really enjoyed your blog. I just bookmarked it. I am a regular visitor of your website I will share It with my friends .Thanks.
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