Glimpses of Life
Last Thursday, the day of my 23rd infusion of Pembromizumlab, the drug that has kept me alive and surprisingly healthy for more than a year, was a good day. Every 3 weeks I schlep myself to the city for this infusion and make the most of the day. A friend meets me there and we have lunch and keep each other company for the morning or Eric comes along (always he comes with me on the weeks I have scans) and we sit quietly familiar with the setting. Last Thursday was a day I was able to see beauty in this hard place.
I like to drive to the city. Even though it takes over an hour I still love the quiet of the car after a busy morning in the house. Traffic. There’s lots of it. If I leave after 7:15 it would be worse.
My first appointment was getting my port accessed and labs at 8:30. The size of the needle (it looks like a giant thumbtack) the nurse sticks into my chest is probably scary to see but it doesn’t really hurt much, because the port is right under the skin.
I headed down to the cafeteria and got an egg scramble with spinach, mushrooms and chicken sausage.
The next appointment is at 9:30 with Dr. Rugo. This appointment can’t begin until the lab results have gotten there, so sometimes its a little late. Actually this week, Dr. Rugo was in China (last time she was lecturing in Saudi Arabia) so I only saw the NP, Marina. Each time, I have a complete exam with the NP, and then if Dr. Rugo is there I meet with her afterwards. She takes a look at my labs, at me and if I’ve just had a scan, she reads the report and discusses it with me. After meeting with the NP, I went over any needed info with the study coordinator, Katie, who was in the room the whole time. Eric arrived (he took the train and bus) during this time.
My last appointment of the day was the infusion at 10:30. After meeting with the NP, she ordered the medication from the pharmacy. While this was processing I went ahead and checked back in at the infusion room (where I had previously gotten my port accessed). The woman at the check in desk is always kind. The waiting room and infusion chairs are filled with people with complex, sad, triumphant and devastating stories. There are always people who look “healthy”, like me, and always people who look extremely sick.
Usually I can spot someone getting a tour of the infusion room because they’ve just gotten diagnosed and are being shown around before their treatment begins. They always look shell shocked. Nobody wants to be there. I remember feeling this way, but after a while its easier to put the dread aside and try to see beauty in the day.
Next I sat in the infusion chair and got hooked up to the bag of saline which is given throughout my infusion. I think getting the whole bag helps with me feeling better afterwards. Eric sat beside me. Sometimes we talked and sometimes we read or just got some work done. Faithful is the word best describing my husband. He is faithful in every way. Beside me whenever I need him. This picture stands out to me because there’s a man behind a curtain on the other side of the room also faithfully sitting by his wife. She was in pain all morning, asleep much of the time and she looked awful. A doctor came by, nurses spoke softly in clusters around her. He looked exhausted. They were trying to get her pain under control. I couldn’t help but wonder if this would be a picture of our life in the future.
The Pembromizumlab arrives from the pharmacy. Here are 2 nurses who often take care of me. I absolutely LOVE this picture. I’m going to have it printed and take it to them. I have such a good time with them and genuinely love seeing them every 3 weeks. Lauren is on the left holding the bag of drugs. 🙂 Evelyn is on the computer. They have to triple check all the info with 2 nurses before administering the drug. Pembro only takes 30 minutes so once it gets started we know we’re almost finished. Eric left, when the machine beeped to go get the car. The nurse removed the needle from the port (takes about 20 seconds) and I was off.
After getting unhooked, I stopped by the bathroom. The sign reminding chemo patients to flush twice is a constant reminder that “YOU ARE SICK”. Cancer isn’t contagious but traces of chemo can be found in bodily fluids for some hours after the infusion. When I had chemo 3 years ago, I made sure to be extra careful for 24 hours after being home. Pembro doesn’t have the same issues.
On our way out. This trek to the hospital at Divisadero and Sutter is becoming quite routine.
Eric and I decided to get some lunch near our home so we wouldn’t get stuck in traffic in the city by staying too long. This was a salad from a restaurant around the corner from our house. Yum.
Afterwards we realized we had a little bit of time before we had to get the kids from school so we decided to do some much needed calendaring.
I rushed to pick up Emma and then Eli. We had some time so we got some ice cream after school. It’s starting to get warm on some days.
I dropped Emma off near the house and then took Eli to an appointment we go to each week. I felt a little fatigued climbing the stairs. I generally feel good after an infusion except for just tiring easily.
For Mother’s Day I had asked for the family to play Hearts with me 3 times without complaining. I had to teach them and I suppose it went ok. They weren’t super enthusiastic at first but for the sake of Mother’s Day requirements, they put up with it. Eli was my “partner” and Caleb was “partners” with Eric for this first game. We’ll try again this week. I’m hoping they’ll be hooked after a few times.
It wasn’t all bad. The kids got very silly. We laughed a lot.
Sometimes the trip to the city for my infusion is something I dread and feel extra burdened by. But for some reason this time I saw glimpses of grace and beauty. I’m thankful for these little signs of life in the day. I don’t want to forget because some days aren’t so lovely. Or maybe they are but my eyes aren’t open.