Update 12/22/23: Highs and Lows

Psalm 121:1-3 “I lift up my eyes to the hills. From where does my help come from? My help comes from the Lord, who made heaven and earth. He will not let your foot be moved; He who keeps you will not slumber.”

Rebecca: I had my infusion today, which had its moments of being rough. There were many moments that I just had to call out to God to give me the strength to persevere. 

I always try to make the best of these hard days by wearing fun things to my appointments, which includes big/fun earrings, shirts, and today a fun hat made by Karen, my SIL. I also enjoy bringing treats for the staff because I want to show them my appreciation for all they do. Today, I brought them fudge. I just love the staff at Baptist and have grown to love all of them. I had nurse Amy again today, along with Tiffany, who was training to work on the infusion floor. My sweet nurse, Becky, had the day off, but she left me a sweet card on my bed with names of God that she is studying. It’s in the small things that I can see God encouraging me in the hard moments.

Thankfully, I only had to have one poke for an IV today because my one IV held! This is huge since the last three times I had 2-3 IVs placed. The pre-meds are the toughest for me to get through. Even diluted, there is a medicine that just burns when they insert it in my IV. Don’t even get me started on the Benadryl, which hits me like a brick and makes me instantly tired. I can’t talk straight and feel off. I guess that’s what happens when you don’t drink…I’m a light weight. 

I utilized my ice packs again to hopefully prevent neuropathy damage. My fingers and toes didn’t like me icing them today either. But, I survived my chemo day and made it out of there by 2:30. 

Since the ice is so cold, I have to use lots of blankets to keep me somewhat warm. My cousin, Melody, got me this amazing heating pan that wraps around my shoulders and down my back. It feel heavenly!!

The highlight of my day was having my sisters around. They were able to rotate into my room and support me. Rachel not only bought me a chai tea, she bought me Panera for lunch! 

At the end of the day, I had a brief scare. When I told my nurse I’d see her in 3 weeks for my immunotherapy only, she told me I had round 5 of chemo. Somehow in the system it showed that on one page, but then we found a note stating immunotherapy only. Nothing like having your heart stop because you were celebrating last chemo for now to do radiation and give my body a break. I hope to slowly get back into an exercise routine to get my body back into shape. Unfortunately, there are about 4 medicines I am given that cause weight gain. It’s hard to see the scale move the wrong way. I know that’s a minor issue in the whole scheme of life, but it’s hard none the less. 

Wayne: During the ride home, we received a call from our oncologist in Chicago. I’ll never forget meeting him the first time when it was all overwhelming. He was leaving for vacation, so he was as abrupt. Thankfully, over the years, we have grown to really appreciate and care for this doctor. I believe he has grown to care for Wayne too. I mean, he didn’t have a lot of long term patients like Wayne, whom he always called his boring patient.

Anyway, he looked over Wayne’s MRI and said it looked slightly better, but after we mentioned the side effects Wayne experienced, he looked at it close and told us that the medicine can cause things to flare up in the tumor. Since Wayne has some tumor I. His motor strip, that would explain his negative experience. We asked him if another dose would increase the side effects and he didn’t give us a straight answer, but did say that if we were looking for quality, probably he would skip it. He told us Wayne’s slurring is coming from the motor area, not the language area. Wayne can speak and understand. The issues he is experiencing (the complete loss of his right arm and the slurring of words) is all from the tumor in the motor region.

I also appreciated the fact that he said we should just take time and think it through. He said enjoy the holidays and then we will regroup after that and discuss our decision. I felt like he cared and wasn’t trying to push us any certain direction. He knows Wayne wants quality time, and he seems to honor that and understand. 

This evening Wayne’s home health nurse came. I really like all the nurses that we have had. The one tonight was very compassionate towards Wayne. She told us that she is going to request a swallow study, since Wayne has had a few episodes of choking on liquids. She is also arranging a speech therapist to come to our house and she will follow up on the status of the hospital bed. She also explained to Wayne the difference between hospice and palliative care. Overall, she was a God send and such a blessing to both of us tonight.

Wayne and I spent the evening recuperating watching some tv and snuggling with Bo. He is always so happy to have me home. Dogs truly know how to make you feel special.

Thank you to my friend, Carla, who took Joella to another barn day. Joella loves the horses and came back beaming. Thank you for loving on my girl when I can’t!

Prayer Requests:

- Wayne: for peace with whatever decision we move forward with and that he is able to be fully engaged the next few weeks as a family.

- Rebecca: please pray for no side effects from the chemo and that God heals my body of this cancer.

- Kids: for all that they are processing and wisdom for our older kids in decisions they have to make (school, relationships). Pray that their faith and trust in God would continue to grow.