**Warning this post may be a little long and jump around a bit.**
 |
| Dad and me before his surgery |
Today marks the first year since dad's surgery and unofficial diagnosis of Glioblastoma Multiforme. It would be two weeks before we got the official diagnosis, but the Dr. Sorensen, dad's surgeon had unfortunately seen many GBM4 cases and was fairly certain that's what it was. I remember mom handing me the phone in the waiting room which was used to communicate with the surgery team. He told me the details, I took diligent notes in my phone, trying to stay focused and ask the "right" questions as failed to hold back the stream of tears I was trying to keep my
mom from seeing. I'm an academic like my dad. I wanted the facts. I wanted the statistics and the possible outcomes on either side of the curve. I wrote them all down. Martin was standing right next to me and I vaguely remember asking him for clarification on some medical terminology and mostly I remember being numb. After hanging up with the surgeon, we went in to the chapel in the waiting room. Dr. Sorensen
 |
| Thanksgiving 2016 |
had already given mom the brief version and she had shared it with Katherine. I told her I would call Marky and Wendy, knowing they were waiting for a call to tell them the outcome. I had calmed myself pretty well, I told them the news. I began to sob, Wendy cried, I don't remember what Mark did, but I feel like he was trying to be strong and level headed. That's how Marky is. I gave them the statistics: median life expectancy is 15 months, most die before 12 months and only 5% live longer than 2 years. Dr. Sorensen said he had patients that were 10 years out, but that was not at all the norm. We would likely see more and more of the strange behavior and gradual loss of function. I didn't understand why this would happen to our dad. He was full of life, brilliant, kind, agile, talented, and only 60 years old. My girls needed him, he needed to see them graduate college, and see Mark and Katherine's babies be born. This was not how this was supposed to happen... and at Christmas.
 |
| Mom and dad |
Last Christmas was not filled with joy and celebration of the birth of the One that brings dad so much comfort. It was terrifying, sad, uncertain, and dark. Martin took the decorations down for mom before dad came home. It was too much for her to have them up and I think she was almost angry about the contradiction of the season that was upon us and the season in which we were entering. We will be eternally grateful to the family and friends that brought us food, sat with us, prayed with us, read to dad, sang to him... and I personally am grateful to Martin's co-workers and their love and kindness, not letting Martin go to work and covering his shifts so that he could be with his new fiance during that time.
So much has changed in a year. Dad has gone from a vibrant, funny, happy person to someone much different. He is quiet, and almost contemplative. It's difficult to get him to smile at things that he used to, and he is rarely spontaneous and lively. Dad struggles every day. It's so shocking to watch and you realize how much you take for grated. Life. Your own daily existence. Dad struggles with staying awake, alert, mobility, independence, appetite... Some days he welcomes death, and others he smiles at the kind gestures of those that visit, play music, read the bible, have normal conversations. Dad isn't afraid of dying, he knows where he will go. I think he worries most about leaving us. For us, or at least me, it is hard to hold the two realities of mourning the loss of someone and having them physically in front you.
 |
| Annabelle loves cuddling with her Opa |
Dad is looking forward to the people who will stop by after the church services on Christmas Eve, like they used to when my grandmother was still living. He wants to buy a new hat for Christmas Eve Service. He encouraged mom to decorate the house and even decorated some ugly sweater cookies. We are trying to be in the Christmas spirit. One thing for which we we are grateful is the fact that dad was given 3months with the size and location of his tumor. We are at a year. We have some small goals we are hoping will keep dad motivated to stay with us a little longer. Mark and Wendy are having the first grandson and he will be dad's namesake. The girls call him "Baby Bobby" or "Baby Opa." He is due to arrive at the end of January. I have also told dad that I want him to see me graduate with my doctorate in May. He just smiles and closes his eyes. Some days he asks to see Baby Bobby, and I think he is hoping he will be able to hold him after he is born. He wants to see pictures of Marky as a baby so he can tell if they look alike.
 |
| Dad loves going to Erling Jensen's |
Mom has been so incredibly strong this entire time. It is so hard to be a caregiver and a spouse, and with the help of family and friends, she has managed to fare pretty well. It's overwhelming, and some days she has to go on a long grocery trip, or drive around the block, but she allows herself to take those breaks which is good. Please pray for her strength, compassion, and comfort surrounding every thing that is happening.
So right now, we are working on small goals and taking each day as it is. Dad is no longer doing any chemo, Avastin, or the Optune Cap.
We also had a great group of carolers that came to sing for dad the other day. He was so happy to hear and see them.
Thank you again to all of our family, and friends. We would not be where weare without your constant prayer and support.
