Realism vs. Optimism

Today was a hard day. Neither Geoff or I feel great. The kids have had some mild stomach virus and seemed to have passed it on to us. Painful gas, etc. regardless we are determined to stay positive.

I warned cancer that I have my A game on today, and as it turns out cancer does too. The PET scan was fine. It was in the same scanner/room where I had my radiation mapping CT. I inwardly groaned, but dismissed it. I had an IV put in my hand to have the radioactive isotope injected and immediately the IV was removed. Then I sat in my little room for 40 minutes doing nothing. Since I am literally not to do anything, I decided to sleep. I had a warm blanket and it wasn't the most peaceful nap, but it was ok.

Then I had the scan and no one talked to me the whole damn time. It made for a very long and unpleasant scan. There were no breathing instructions, no time to readjust, just 40+ minutes of laying completely still. I told myself I was happy to do it if this is what it would take to beat cancer, but in the end I was considering readjusting just to see if anyone would notice.

After my scan we had an hour to kill so we left the hospital and went to a knitting shop. We bought some yarn for baby hats (for school) and then headed back to meet up with our radiation oncologist.

When we went back for my appointment we had to stop by the scale. I lost another 4 lbs since last week. Not a good sign, but hey, I lost weight. We had to wait a little bit because my oncologist was in the middle of a procedure. Then she came in. She barely looked at us, she muttered it wasn't good and then went to pull up the scan on the computer. Her lip was quivering and I told her to forget the scan and just tell us. It obviously was really bad.

Apparently the cancer has spread to at least one lymph node in my neck. This is considered a "distant spread." This is bad. According to my oncologist chances of kicking this are "slim." In other words this is considered "terminal." Based off the type of cancer I have and where it is, they don't have any answers on how long, but it could be months, but it might not be. Nothing is for sure. I'm acknowledging that I may die. I'm accepting that I might die, but I don't want to die. I want to live. I want to watch my kids grow up. I want to live out my life with my husband and family...So, I'm not going to die.

Surgery is no longer an option. Radiation isn't option right now either. That leaves chemo. I have an appointment with my other oncologist on Monday and I will probably start very aggressive chemo on Tuesday. This will be the determining factor in the long run. Everything depends on how my body and the cancer responds to the chemo. I will lose my hair, my blood counts will go low, it's going to be brutal. My oncologist suggested that if we can afford it I should quit working, quit school, and spend the time with my family. I think she is hopeful, but not optimistic.

Geoff and I heard everything she said. We asked questions, but we didn't break down. I don't think she knew what to do with us. Finally when we were done asking questions I said "I want to go pick up the kids. Now." She agreed.

Then came the tears and the realization that we had to tell other people. Geoff suggested we not tell anyone. It had appeal, but I looked at him and said, "no, we are going to need ALL the help we can get." Unfortunately, this meant I would have to tell my parents. Trust me, this is not a phone call you ever want to make. It was horrible!

Meanwhile, we hadn't even left the radiation dept before I texted our photographer, Beth Skogen, and asked her to do photos ASAP. She is coming tomorrow afternoon and I don't care what it takes we will find a way to continue to have photos with her frequently so our kids can have documentary style photos of us as a family.

After we picked up the kids and the dogs, we headed home. Geoff's parents arrived a few minutes before us so we talked with them too. After that I called one of my old roommates and then I reached my max for today....although I really need to call my brother.

I vowed I would blog and I know it will make me feel better, but I'm struggling to find the balance between being realistic and optimistic. I'm excited about photos tomorrow esp. because Geoff and I will both have our parents here. I wish all our brothers and their families could be here too...

I guess I don't know what else to say. I'm scared. I was actually surprised there was no bone mets. I knew I didn't feel well, but everyone keeps telling me that I look great and it never seems right to say otherwise. At the same time, this was the closest I've gotten to normal. My energy has been better, I've been able to think clearly, and I've been really excited about projects. Now I have to decide what to let go and what to hang on to. What are the right things to help me heal and maintain my hope without taking too much away.

I want my life back, but more than anything I want to live. If living means giving it all up, so I can focus on the fight, then that is what I will have to do. Everything else pales in comparison. Someone suggested selling my cancer cells figuratively to raise money for a vacation. I'm thinking this might be a good idea to help us pay our bills so I don't have to stress as much. Besides its funny and makes me laugh. I need lots of laughter right now. We all do.