Personally, I was fairly comfortable with the upcoming scan. I didn't think we would see much at 3 months. It was the next scan I was worried about. While I was feeling somewhat at peace with the situation, Kevin was not. He did not sleep much the night before and his "short" demeanor in the morning was proof of his concern. "I didn't want to get my hopes up," he commented. As I left him at work I tried to turn him around with, "Don't worry. It's going to be okay."
Our appointment day started with labs at 11:30. That didn't take long, so we leisurely made our way over to the main hospital/clinic via the Skywalk to imaging. As we walked by landmarks like the healing garden or the historic display windows, it dawned on me that Kevin had not seen any of this. While the kids and I had passed these areas numerous times during that early week in December, Kevin had been in his room or travelled those back-way passages that only patients see.
The "get there early, get in early" plan didn't pan out. Kevin tried to sneak in a little nap before they finally called him back at 12:35. I decided to wander around because I was sick of sitting (and there were no puzzles in that waiting room). The MRI was scheduled to take 45 minutes. After 40 minutes of meandering to the cafeteria to see what was on the menu, checking out the auditorium wing, and enjoying the healing garden, I made it back to imaging in case he got done early. Note to self: do not look at all of the food magazines on the shelf when you are well past your usual lunch time.
The proposed 45 minutes stretched into two hours. I overheard one of the ladies say they were having problems with the machine getting clear pictures. Thankfully Kevin had fallen asleep twice (woke himself up with his own snoring) so he didn't really notice how long things took. Plus he was told they had gotten clear pictures. You can guess my response when he came out, "Let's go eat!"
We had planned to treat ourselves to Piggy's salad bar since we had been graciously given another gift certificate. As we walked up to the building, we read the hours...Lunch 11:00 to 2:00. We had just missed it. Oh well, no biggie. Off to our old standby Culver's for a fish sandwich (also paid for by gift cards). We continue to be humbled by how giving people have been; it brings tears to my eyes.
A leisurely lunch while watching state basketball on TV, a stop at Wal-Mart for more cough medicine, and attempts (poor cell coverage = dropped calls) to talk to Kailey as she drove home for the start of Spring Break were our way of killing time and trying not to dwell on the upcoming appointment with the doctors.
Checking in to 1st floor brought smiles to our faces and a sense of amazement. Kevin walked up to one of the check in windows and was greeted by a warm, "Hi! How are you? What's your birthdate?" We both stood there with our jaws hanging open. "You remembered my name? How do you do that? You have a hundred people (no proof to that number but it feels like a 100) come through here each day." At the same time, one of the other check-in ladies walked over to say "Hi" too. That is incredible! Yes, we were there for 30 days in a row but that was nearly a month ago AND for the majority of that time, Kevin did a self check-in by scanning a card. Being someone who constantly struggles with names, I am beyond impressed. We talked about it again on the way home.
Kevin strategically seated himself closer to the radiation treatment area. Sure enough, one of the radiation nurses walked out to get a patient and spotted Kevin. "Hi Kevin! How are you? How was your trip?" Yep, she had just made his day. Thank you, ladies, for being so amazing!
Although our 4:00 appointment was supposed to be with Dr. Kwong and Dr. Conway together, Dr. Kwong came in first. After his usual line of questioning to gather information, he opened the MRI scans to begin the explanation. The typical explanation...look at me saying "typical" like we're old pros when this is only Kevin's 3rd MRI (pre-surgery, post-surgery, and today). The typical explanation starts with a review of the previous MRI so we can acquaint ourselves with what it looked like in December. As Dr. Kwong made his way to the current scans, panic set in. His halted explanations and attempted reading out loud of the written explanations told us there were two new cancer growth spots.
During this, Dr. Conway had slipped in. At this point, I turned to him, with probably a desperate look on my face, and said, "We're lost." We were not making any sense out of what Dr. Kwong was saying and Kevin was having a hard time hearing his quiet voice. My plea set Dr. Conway into action. He moved over to the computer and basically started again.
Kevin has two new cancer growth spots. One is very small, more toward the front of his brain. The other is below where the old tumor was removed. There is also a possible regrowth in the old tumor area but they could not determine that for sure. The white area around the old tumor primarily indicates swelling but there was a small portion they were not sure about. Now what?
What's left? They recommended a chemo drug called Bevacizumb (yes, I had to have them spell it for me). This drug, also used for colon cancer, is given intravenously. According to the doctors, it is generally well tolerated. One of the side effects mentioned was a rash. I had heard of a drug called Avastin and wondered how similar it was to their recommendation. They said it was they same drug, just a different name for it. Unfortunately, that statement hit me hard. For some reason I had remembered our neurosurgeon, Dr. Hughes, talking about the drug. He said the normal course of treatment is surgery, then combined radiation/chemo. If the cancer reappeared, then they hit you with Avastin. Perhaps my memory isn't accurate, but I'm recalling him describing it as a kill-all, last resort kind of drug which was not fun for the body. Dr. Conway and Dr. Kwong didn't leave us with that impression so I am still processing, but it leaves my stomach in knots.
Another option is clinical trials. Kevin nodded immediately that he was open to looking into clinical trials. I have wondered all along how one goes about locating clinical trials and if I should be doing that research. Every time I made an attempt, the medical mumble jumble left me confused. Thankfully, the doctors said they (or their team) would begin the research process. They will start by seeing what Kevin would qualify for locally (Rochester, Madison, etc.) and then look beyond. Quality of life, side effects, and distance from friends and family are huge issues when taking that leap. At this point, we need to see what is out there.
The current plan is to have Gundersen do research and get back to us early next week. We don't have an appointment scheduled, but hopefully we can meet by late Tuesday or Wednesday to discuss some options. Avastin cannot start until a decision is made with the clinical trials.
We are not giving up hope.
Making those phone calls and having those conversations again has been heart wrenching...but we still have so much to be thankful for.
- There are so many loving and caring people in our lives. We sat in the parking lot outside the hospital for nearly 45 minutes calling loved ones. Imagine going through this alone.
- We still have options.
- Those fabulous first floor ladies who remember who we are and treat us like a friend. They should be giving classes on customer service.
- Insurance. A bill came this week and Kevin said, "Guess how much radiation is?" Not in the guessing game kind of mood, I refused to guess. "$4,000," he answered. I shrugged. "EACH," he emphasized. Kevin had 30 treatments. Process that dollar amount. Insurance covered it ALL. Please, do not let your loved ones go without insurance. Kevin was a never go to the doctor/didn't take any medications guy until December 6.
- Prayer. It gives us hope.
- The time we have. It feels like the window is shrinking but we have today.
May the God of hope fill you with all joy and peace as you trust in him,
so that you may overflow with hope by the power of the Holy Spirit.
so that you may overflow with hope by the power of the Holy Spirit.
Romans 15:13
Am thinking good thoughts. Praying for you. M D Anderson is a good cancer hospital. I think that is in Texas. We appreciate the blogs. Good luck to all of you.
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