December 9, 2015. We were so blessed and grateful that Kevin had come through his brain surgery so well the day before. He was walking (better described as shuffling), talking (joking like the usual Kevin) and eating. It was amazing for us to fathom that someone could be digging around in your brain one day and you are functioning the next. He still had weakness on his left side but there was every indication that strength would come back. Thank God for talented surgeons.
We were optimistic in so many ways. They had recovered all visible signs of the tumor. There were no signs of tumors elsewhere in the body. We still had our Kevin.
Late that Wednesday afternoon (day 4 in the hospital), Kevin was seated in the recliner, Keaton on the couch and I was perched on Kevin's bed. The surgeon came in and pulled up a chair. I don't remember the exact conversation. I do vividly remember the words "a year plus or minus six months." I let out a loud guttural wail "No!" and fell on to Kevin's shoulder. The three of us huddled together, shocked and saddened. It was our first introduction to the term, which has now been a part of our life every day, Glioblastoma.
From there, the information was a bit of a blur. Yes, they couldn't see signs of the tumor in scans, but it is still there and it comes back. Our celebration of no tumors elsewhere in the body was actually a bad sign. Tumors that are throughout the body would not be Glioblastoma and perhaps more receptive to treatment. In harsh reality, there is no known cure for Glioblastoma right now (but strides are being made). Dr. Hughes was emphatic with his message to Kevin: "This is YOUR time." Use the time you are given to do what YOU want.
After the surgeon left, we pulled ourselves together. People were coming to visit and we could not let on what we now knew. Kailey needed to hear it from us in person. It was close to finals week so we had sent her back to school after the surgery to finish her week of classes. There was no way I was making another phone call like the previous Sunday. Our families needed to be together so they could lean on each other. So we agreed to hold it in, put on a smile, and wait until the weekend to share the news. Because Kevin is who he is, we had at least 30 people visiting that night. We moved Kevin out into a waiting area and filled every chair. It was amazing.
December 9, 2016. Scan day in Rochester. A 10:00 am first appointment meant we didn't have to leave home before the roosters roused. Yes, I had packed our toothbrushes and extra underwear this time! My first mini-stressor was parking. As we rounded the corner, our usual ramp flashed "Full" so we made our way down the street to the next ramp. My mind was bouncing around with questions...How far will we have to walk in the cold? Will I be able to find the building we need since we are coming from a different direction? Will our parking pass still work? As Kevin would say, "Not to worry." The ramp was connected to the buildings at the subway level so we didn't have to walk outside. The signage was excellent and our pass works in all the ramps. Mayo really has this figured out. I did have to chuckle about the handicap parking. Every level of the ramp had at least 10 handicap parking spots close to the elevator...all full. I'm thinking a patient at Mayo without a handicap sticker is the minority.
Labs went off without a hitch. Not nearly so busy as last time. The MRI waiting room was full but luckily someone was leaving as we arrived so we could find a spot for a wheelchair next to a regular chair. Like last month, they now have me come back with Kevin to help him change. We weren't assigned the "Relax" bay this time. I wonder if that was a sign. The bays seem quite small when you have a wheel chair and someone like me lugging our winter coats, medical paperwork bag and crochet bag. The nurse said I could take the chair and promised she wouldn't let anyone put an IV in me.
I was teasing the person who put in the IV about practicing her yoga moves as she put in the IV. She had to kneel on a stool to get the right angle but she was young and agile. After the IV needle was in place, she wiggled it around a bit and decided to flush it again to be sure it was adequate for the line they needed during the MRI. Kevin moaned a bit and said, "I don't feel good." I jumped up and started to hold his head while the IV person hollered for a nurse. Suddenly that tiny bay was filled with about 10 people. A doctor was holding his feet in the air. A nurse was applying ice packs. Others were trying to hook up machines to get his vitals.
It was only a few minutes of chaos but scary. Kevin's blood pressure and pulse had dropped causing him to pass out. The needle phobia had struck again. Kevin did say later that the IV needle really burned, most likely when she was flushing it. They got him to a cart/gurney and started him on fluids via IV. Within a very short time he was feeling much better. I was concerned that this would put him behind schedule or they wouldn't feel he was stable enough to have his MRI. Can you tell I worry a lot? No worries. I got him changed and, with help, back into his wheel chair. The MRI went off without a hitch.
I just want to clarify...I don't think I would classify myself as a "worry wart" (although Kevin and the kids may argue that point). In my mind, I am questioning all the possible scenarios so I'm prepared. How's that for justification?
For lunch we have moved from climbing the stairs for a burger at Newt's to wheeling across the street to Jimmy John's to let's just eat in the hospital cafeteria. We didn't have to venture outside in the cold and everything is wheelchair accessible. No greasy burgers and fries on the menu tho.
We checked into the Gonda building at 2:00 for our 4:00 doctor appointment. They always give us this look like, "Do you realize how early you are?" Where else are we going to go? Plus, it's quiet and the chairs are fairly comfortable.
Typically, Kevin tries to nap while we wait and I had planned to crochet. I wish I was brave enough to strike up a conversation with others in the waiting area, but I often wonder if it's like an airplane. Some people want to be just left alone. We were entertained by an interesting sight. I could hear a buzzing sound. A short distance away a young woman was shaving a young man's head...in the waiting room. Really? His head was already closely shaven so it wasn't like locks of hair were falling to the floor. It was more like shaving a beard. But in the waiting area? Shortly after, she got out a bottle which appeared to be shaped liked rubbing alcohol and poured it on a cloth. She proceeded to wipe down his head, while he winced. Strange...but Kevin figured it out. They were putting on a Neptune--the device with patches on the head which provides electrical impulses. We missed the final acts of this production as we were called back early to see the doctor.
Dr. Kizilbash began by asking if Kevin had any new symptoms. Not really. We feel that some things have worsened...mobility and confusion...but not new symptoms. Unfortunately, the scans showed that the tumor has continued to grow. We expected that.
However, Dr. Kizilbash said the scans were a bit misleading. The Avastin infusion, which Kevin had been on, often masks some of the contrasts on the scans. Now that Kevin has been off Avastin, all of the contrasts seem much brighter. So it is difficult to determine how much worse the tumor actually is Also, since we had difficulties getting the chemo drug, he started it a week later than planned, so perhaps not enough time had elapsed to see an effect. Dr. Kizilbash recommended another round of the chemo drug. He cautioned, chemo would not kill the tumor. There is a 10 to 20% chance that chemo could slow the tumor growth to give Kevin more time.
The last round of chemo kicked Kevin's butt. He never actually got sick but he spent three full days in bed. It was over a week of extreme fatigue, weakness and aches. Why this time when he had taken this same drug before? It was a much higher dose. However, Kevin treated it like the pain of child labor...over time you forget. At the time of treatment, he was ready to "pull the pin." When it came closer to scan day, he was saying, "Now I know what to expect." Ever the optimist.
Quite honestly, I had thought this would most likely be our last trip to Mayo. We felt the tumor was growing so the chemo wasn't working and we would most likely sign up for hospice next week.
Now with Dr. Kizilbash's information, we had a decision to make...more chemo or hospice. We didn't need to make a decision right away. Sitting in the doctor's office, I had a feeling what direction Kevin would take. He wanted another round of chemo (I probably shouldn't remind him of that when he's battling the side effects!) Kevin has been struggling with some pretty big decisions lately but I think he felt confident about this one. Dr. Kizilbash did agree to lower the dosage a bit so that might help too.
We'll be back in a month for another scan.
Today we are thankful for:
- A talented surgeon and successful surgery just over a year ago which left no permanent damage and his words of wisdom which we can all take to heart: "This is your time."
- Doctors and nurses who continue to be so caring.
- People reaching out to help us, even in the smallest of ways...holding a door, offering a hand, moving a wheel chair, lighting our garage furnace, the list could go on and on.
- Conversations. Some days just getting up and getting dressed is really hard work for Kevin. He wonders if it is worth it. Then we have wonderful conversations with friends and family and are ever so grateful that Kevin is still here to be involved in it all.
- Our kids, and their significant others, who often give up their weekends to be with us. It means more than we can say. We often shed a few tears when they leave.
Yet you do not know what tomorrow will bring.
What is your life?
For you are a mist that appears for a little time and then vanishes.
James 4:14
