Wow, sorry it’s been like two months since my last post. I went to Whistler B.C. for a week and ever since I’ve been back, it seems like I can’t find time to do anything. I almost considered giving up on the blog. Writing about something that happened three years ago seems so pointless sometimes. But then I remember I have mild OCD and can’t leave anything halfway done without agonizing over it. And a story isn’t complete until it’s complete. So here I am. Again.
The morning of August 29th, the day after Mike had his first treatment of steroids and radiation to the spine, it seemed all the doctors making rounds expected Mike to show significant improvement in his movement. They’d come in, one by one, optimistic and vivacious, ask Mike to wiggle his toes and lift his legs off the bed (he could not), then their face would drop and they’d grow quiet. In fact, Mike’s legs seemed even more numb and less functional than the day before. At one point while Mike’s family was out of the room, perhaps at the cafeteria grabbing some food, someone came in and reversed their last decision, telling Mike and I that he was going to have to have surgery; there just wasn’t enough improvement fast enough from the radiation and steroids. We were told Mike would have the best of the best neurosurgeons.
Mike’s oncologist, Dr. Ribas, stopped by that day as well. He was very concerned with the study guidelines requiring Mike to discontinue the MEK inhibitor for two weeks. He’d only been off of it for a few days and already, he’d become paralyzed from tumor growth. I asked Dr. Ribas if I should continue giving Mike the MEK inhibitor. In his Spanish accent, he looked at me point blank and said, “Yes. Give it to him right now.” He knew he was walking a fine line here. The drug company was the one sponsoring him to run this clinical trial. They have study guidelines for a reason. To better understand the study medication, its side effects, how to dose it, and how to best use it in the future to save lives, the study must be done correctly and in a way that helps the doctors understand how to use it. But it’s different when you’re the one being “studied.” This is your life, not an experiment. Stopping that MEK inhibitor vs. continuing it could have been the difference for some people. Dr. Ribas understood that. He cares about people. Because of Dr. Ribas, I have faith in the medical community as a whole. There are great doctors doing their jobs for the right reasons. It makes me cry just thinking about how much I cared for Dr. Ribas and the faith I had in him to “rescue” Mike. Although that didn’t happen, I will never forget the passion Dr. Ribas has for his patients and for moving towards finding a cure for melanoma.
We were concerned with what would happen when Mike ran out of the MEK inhibitor two weeks before he was supposed to. How were we going to get the drug company to give him more to keep him alive? We figured we’d cross that bridge when we got there.
When Mike’s family was all in his room, the neurosurgeon that would be performing the operation came to our room to meet Mike and go over the procedure. Dr. Langston Holly looks a bit like Wayne Brady, in my opinion. I loved him. He presented 2 possibilities: one being that he would remove the vertebrae at the point of compression and put rods and screws in Mike’s back, with the risk that it may not be very stable long term. The MRI had shown that the vertebrae above and below the point of compression were almost as diseased as the compression spot. Melanoma in the bone actually makes the bone softer, and the screws and rods would be anchored into diseased bone. The second option that he preferred would be just to go in and remove the back and sides of the vertebra and not put in any screws or rods. The hope would be that the vertebrae would fuse together and stabilize themselves. He surprisingly asked our opinion, and wanted to know Mike’s feelings on the two options. We told him we trusted his judgment and that the second option without screws and rods sounded good, especially since it should be a little less painful of a recovery. He told us he was very confident in this surgery; he’d done it hundreds of times, even some on melanoma patients. “I just don’t know whether it’s going to help him [Mike], make him worse, or if we’ll even be able to get the entire tumor.” He added, “It’s all in the Lord’s hands; we just have to pray.” At the time, this statement felt like a monumental, divine sign. Surprisingly, he made many more comments about God and prayer. We were given a Christian neurosurgeon who was apparently one of the best in the country. It seemed our path had been guided and God was in control. Shortly after our meeting with Dr. Holly, a team came to get Mike. We all said goodbye and they began wheeling him out of his hospital room in his bed. As I watched him go, I was acutely aware that anything could happen during surgery and this could possibly be the last moment I might see him. It was a very emotional moment. I was bawling, Sue was crying, Mike must have been scared with tears in his eyes.
We were switching from the medical floor to the neurosurgery wing, so we gathered our stuff and carried it around until we were told which would be our new room. Mike’s sister, Laura, would be arriving soon so we were waiting in the outdoor cafeteria area for her. I was too antsy to sit, and for a while I’d felt a desperate need to be alone to pray and put my entire being into willing Mike’s surgery to go miraculously. I found a very small waiting room on the almost deserted 5th floor. Turning the light off and shutting the door behind me, I kneeled on the floor with my Bible in front of me on a chair. I prayed for a long time, bawling the whole time, begging God to let Mike make it through this surgery and for the outcome to be good. I opened up my Bible and started to read a chapter in Mark. I came to a story about a boy with seizures where Jesus healed him and told his disciples that certain afflictions can only be healed “by nothing but prayer and fasting.” That was enough for me to be convinced I was given this passage for a reason, and damn it, I was going to fast in order to heal Mike. Let me remind you, I was desperate and grasping at any sort of possible “sign” and had long ago decided to put my faith in God. So despite having already lost a few pounds during the past few months of stress, I was now going to fast for an undetermined period of time. Not my smartest move, but whatever.
I went back down to the outdoor cafeteria area to find Mike’s parents, Trisha, and Laura since by then she’d arrived. I declined to join in on the frozen yogurt they were enjoying but we all huddled on a bench in the sun trying to rid ourselves of nervous chills. Tom went back to the apartment to walk Griffey and we went back inside and waited in the large waiting area on the first floor by the cafeteria where Dr. Holly was supposed to come find us after the surgery. We checked in with a lady at a small desk who would notify us of reports of progress from the operating room, then sat down and started blubbering about how we wished it was us and not Mike going through this and how unfair it was.
Around 8 pm, our hearts jumped at the sight of Dr. Holly wearing scrubs walking straight to us in the waiting room. I began to breathe after he told us everything went really well and explained more of the details of the surgery to us. He said Mike’s spinal cord had been deviated to the right from a tumor pressing on it. He cut away the cancerous bone and straightened out the spinal cord. Wow. Talk about having a job that MEANS something. He also said they have a way of monitoring sensory and motor function during the surgery. Before surgery Mike’s motor function was not there, but it was better after the surgery. He also told us he prays before and after surgery and he knows God is working through him during surgery. I was shaking and crying with nerves and fear. Dr. Holly sat in the waiting room with us for a while and he and Tom talked about Husky football of all things. I joined everyone in the cafeteria after Dr. Holly left while they grabbed some quick food (having to explain that I was fasting and they probably thought I was nuts) then we moved our stuff to the new hospital room in the neurosurgery wing that Mike would be in. We sat there tensely waiting until a nurse from the recovery room called the room and told me Mike’s pain had decreased to an 8/10 from a 10/10 and he was asking for me. I hurried as fast as I could to the recovery room and found Mike behind a curtained off area in bed. His eyes were puffy from lying face down for so many hours during surgery and shiny from something they must have put on there for taping them closed. He was in excruciating pain and was pushing his Dilaudid IV pain pump every few seconds even though it would only allow a dose every 10 minutes. Mike was just trying to concentrate on remembering to breathe. I’ve never seen him in so much pain. A nurse came in and set a brown teddy bear wearing blue scrubs on the bed next to him. Not until midnight did they finally push Mike in his bed up to his new room where his family was waiting. Poor Griffey. It just breaks my heart thinking about how much time he spent by himself during this time. Tom was a lifesaver. I don’t know what I would have done without him. He loves Griffey like a grandchild, so I was able to count on him immensely to be there for him.
Mike’s family left to go back to our apartment after Mike came back around midnight and I asked the nurse for a number of blankets and made a bed on the stiff cold couch at the far side of the room. It was a painful, restless night for Mike. He was pushing his IV pain pump as frequently as it would let him. It was my 3rd night in a row of getting 2 or 3 hours of sleep at most. His family arrived the next morning and Trisha and Laura and I would all take turns rubbing Mike’s feet. He said they constantly felt cold and numb like they were asleep. I requested that Mike have something for DVT prophylaxis since he was at high risk being a cancer patient, being immobile, and having just had surgery. I was somewhat surprised that they didn’t think of this on their own. Like getting a blood clot was an afterthought since his prognosis was so poor. They put these compression devices on his lower legs that when plugged in, they would inflate with air and then deflate in a sequential motion to keep the blood flowing.
Mike was hardly eating. We would order food off the cafeteria menu at each meal time but Mike would end up leaving most of it untouched and eating ice chips and prunes instead. And Cup Noodles. Mike’s parents went and got us a plug in water boiling tea kettle thing so Mike would drink tea nonstop. His weight loss seemed to be speeding up and my fasting started to get the best of me. I don’t think I even made it 48 hours into my fast and I was so weak, it was compromising my care taking abilities. Having little to no sleep and no food was taking a major energy toll on me and I was so shaky and wiped out I was having a hard time getting up to take care of Mike’s needs. Finally, I think Mike’s mom told me I should probably give up my fast and I conceded. I started ordering everything they’d let me order on the menu and scarfing it down each mealtime, not making any attempt at eating healthily.
Mike’s sisters left together the next day. Mike had one day to recover from surgery and then he would begin physical and occupational therapy. We saw this as somewhat exciting and promising because we hoped that he might regain his ability to walk. His recovery became the focus instead of his poor cancer prognosis. Being paralyzed was something of a distraction, as depressing as it was.
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Please continue to write about Mike and your struggle. I remember reading these as it was happening but reading again helps me to remember my cousin. Much love.
Thanks for the encouragement, Kara! I will keep it up. I appreciate it so much.
I still read allll your posts Jessica. Always something to relate to.
Thanks Steve! You're the best.
I saw one of your posts and could not stop reading. You are a gifted writer. I had cancer in 2011 but mine turned out to be lymphoma. I wish so much that Mike's had been lymphoma rather than what it was. I feel for you for what you have endured during that time. I am happy that you have found some happiness now in spite of what you have been through. God bless you.
Hi Jessica, wow you are truly an amazing person. You have great courage, strenght, and faith. I admire the love and support you provided to your husband. Tears build up in my eyes each time I read your blog. Thank you for sharing and I look foward to reading your book when it gets published 🙂 ( great talent=book). I'll keep you in my prayers, Jeremiah 17:7, kind regards, Jessica from Florida
Tim, thank you from the bottom of my heart! I feel blessed that you took the time to read and comment here. I'm humbled and appreciative of all the support from so many people. And congratulations (if that's the appropriate word) for being cancer free for these last few years. I wish you all the best!
Thank you so much! You are too sweet. I deeply appreciate the love and support from so many of you. Blessings!
Incredible story there! you are truly an great person ! alejandro betancourt
Laurie, thank you with all my heart! Much love to you.