Keep a Journal!

Logging might be the most important tool in your bag, the Keytruda is in the doctor’s bag. I took extensive notes at the first few doctor visits, both pulmonology and oncology. They were very helpful in remembering and talking about his cancer. I was able to hear and take notes while Henry listened and processed emotionally. He would be thinking of the next important question to ask and I was writing down what the doctor said. I also took a list of questions to all of those visits. Once I started writing this blog and the treatment started, I didn’t keep the notes more than a day or so. That was a mistake. So I think I am going to have to add a new page to document doctor visits, hospital visits and treatments.

We remember things differently, and he gets really mad at me sometimes for disagreeing with him, so I just agree and go on. So a bit of advise to anyone going through this – get a journal and write everything down.

Keytruda is working!

OK. So the best news in the world is that the immunotherapy is working! His tumor is 30% smaller than it was 6 weeks ago, the doctor won’t say what size it is relative to the size when we started treatment. Forgive me if i’m not bouncing off the walls, like I thought I would be, but… 

When we went in for the 5th treatment and to get the report for the CT Scan, we got the news that the treatment is working and the tumor is smaller — BUT — Henry is anemic and can’t get the 5th treatment for a couple of weeks. AND — We need to go straight over to the hospital for two units of blood, more blood tests over the next few days and an iron treatment each fo the next two weeks. Whew! So much, and he is more fatigued, having more difficulty breathing, can’t clear the mucus out of his chest and his feet are swelling.

The blood transfusion helped immediately, gave him color and a little energy. However, he is so weak that he must stop once or twice on his way from the bedroom to the kitchen to rest. There are chairs strategically placed so that he can catch his breath. He doesn’t leave his chair all day, for anything. We bring him his coffee, ice tea, food, if he will eat, meds …..

He was able to take his Keytruda and first iron treatment last week. I want to be excited and positive, but just can’t, yet.

It is so frustrating and sad to hear him wheezing, coughing and gasping for breath. He has started waking up at night 2-3 times with mucus blocking his airways. I’m scared and worried and frustrated. We have a pulmonology appointment day after tomorrow. Maybe we can get some answers.

To top it all off my father has just been diagnosed with lung cancer. I feel numb. I take him next week for a biopsy.

“I’m afraid I may never see anything but these 4 walls and the tv, ever again.”

The first 12 weeks of Keytruda treatment is so very frustrating. You must take the treatment every week, deal with the side effects, drain fluid out of your lungs, try to work up the enthusiasm to consumers enough calories to keep from blowing away, sit alone or with a spouse for hours, days and weeks on end, cough and cough and wait. Your power of concentration is depleted along with your appetite. Your energy level plummets, taking a shower requires a nap afterwards and walking across the room requires a sit down. Someone must fix your meals, drive you to appointments, keep track of your appointments and important treatment details. It becomes hard t see the light at the end of the tunnel.

The longer you sit, the weaker you get; but, you cannot make yourself do anything. 12 more days until we get the news that the treatment is working and we can begin to plan for real.