Tuesday, February 28, 2017

Melanoma Rears Its Ugly Head Again!

    The new immunotherapy drug, Pembro, kept my tumors from growing for 9 months and then my own amazing immune system did a fantastic job holding them for another 9 months. I had clear scans for almost 2 years and was beginning to feel like the sky was the limit! Maybe I could go for YEARS beating cancer on my own! 
     I began exercising 20 minutes a day pretty diligently. I really wanted to lose the extra 15 lbs I had gained over the summer of steroids. I saw results in gaining strength but no weight loss. I was happy to be stronger and I just kept at it.
     I was so excited and grateful to go take care of a brand new grandson feeling so healthy and strong! I had noticed a pain in my right scapula before I left and figured I had pulled a muscle somehow and just hoped it would go away. I was able to do everything I needed to for my daughter and the new baby, but the pain did not go away. 
     When I got home I started Physical Therapy to see if I could get rid of the muscle pain and I would get a few hours of relief but it wouldn't last. Three days later I started getting weakness and tingling in my right arm and hand. I thought it was my Multiple Sclerosis flaring up. I got an appointment with my specialist but it was weeks away. The next few days I had headaches and called my oncologist to let them know about the new developments. They had me do an MRI of my brain that very day. It was clear of metastases so that was good but why the weakness then? My husband told my Primary Care doctor about the weakness and they both felt like an MRI of my neck specifically needed to be done.
The MRI (pic at right) clearly showed that melanoma had returned aggressively within weeks, encroaching on my spinal cord and causing the pain. My oncologist, Dr. Kenneth Grossman, saw me immediately and I ended up being admitted for treatment. Disappointing for sure. 



I cannot say enough wonderful things about the Huntsman Cancer Institute though. For being a world renowned hospital with a reputation to maintain, they are remarkably and mercifully patient centered. I felt complete kindness from every single caregiver there. 
The hospital was so busy I had to spend the afternoon in the lab waiting for a hospital room to open. These sweet women went about their duties cheerfully but never missed noticing the slightest need I had and never missed a chance to encourage me in my journey.

They had warned me they would put an "art line" in while I was under anesthesia and when I woke it was throbbing and continued to for the next 24 hours. I had another IV in my foot, leg compression things going off continually, a neck brace and shooting shoulder pain. I seriously thought I would die of claustrophobic pain before dawn. Deep breathing through the night, I wrapped myself in the blanket of love from dear friends and tried to hang on to the moment I could get it out. The next day, they were able to use the IV in my foot instead and thankfully my wrist could begin to recover. A week later it is still sore and bruised.

     Many tender mercies and small miracles happened. We were supposed to be out of town with our grandkids that week but my husband didn't feel like we should go and moved the trip to another week (the exact week my neck brace comes off!!! NOT a coincidence!) His work load was lighter that week because of the President's Day holiday coming up. Dr. Lawrence, the surgeon on call, had trained to perform these exact surgeries and our confidence in him was so high. All members of the teams that would decide my treatment converged on my room at the exact time and everyone who would make a decision was there to discuss my case. Dr. Lawrence could make time the next day to perform the surgery. They were able to find a surgery room open at Hunstman so I didn't have to transfer to the U of U. They were able to get the tumor out successfully. The resident said it was one of the most perfect surgeries she could have imagined. I KNEW that the prayers of our family and friends had made that possible! My sweet friend, Becky Nelson, said that the circuit board in heaven must have been lit up from all the prayers. I love that visual. She said, "There is no way heaven could have not noticed the "glow" coming from Farmington." What a blessed and lucky girl I am!



On Sunday we attended a small Sacrament Meeting held in the hospital for patients and I was able to renew my faith in Christ's Atonement for us all. The speaker talked about the hymn, "How Gentle God's Commands" and I thought of the phrase, "That hand which bears all Nature up shall guard His children well." I have always felt that I am in God's gentle hands.

I completely trust the Lord in this trial. I know that it will help me become the person I am meant to be and hopefully inspire others to press forward on their individual journeys as well. I am so grateful for family and friends who have given me unfailing support. I can never repay them for the love and prayers they have extended on my behalf. I hope blessings will return to them many times over in whatever extremity they find themselves.






As we were waiting to be called for labs, I looked at my phone. It was 11:11. My daughter always makes a wish at 11:11 and I asked my husband what he would wish? We both agreed that more quality time would be every wish. We are very hopeful I will make it to the upcoming bucket list trips we have planned. The other morning as my sweetheart was leaving for work, he looked at me with my neck brace and mirroring my brave smile said,


 "We might not win this battle, 
but we will win the war. 
We will be together eternally and 
there is no way we will lose each other."


     I'm home now recovering slowly, faithfully wearing my brace to help stabilize my neck. 
I still have shooting pain across my back and down my arm from nerve damage. I just have to wait for it to heal and pray that it does quickly. Pain meds will relieve it for an hour or so but the side effects are not worth it at this point. I'm very grateful to have had so little pain until now though. 
     I have to look back to see progress, comparing myself to where I was a week ago, instead of looking forward because I have no idea when I won't be in pain all the time. Time heals all wounds, true. And I've got nothing but time.... sort of.