Getting on with the getting on with it..

It’s the end of the school year, we have a kid who graduated from high school, have hosted a graduate luncheon for him, and had a busy couple of weeks! Mike was able to get treatment 26 of Keytruda last Friday at Ohio State, which was a relief after a 3 week delay for the second time in 6 weeks. He has had 2 blood transfusions in the last 12 days, and his blood level on Friday was still 8.9. To give you a reference point, normal blood level is around 13. He got a unit the previous Friday at Ohio State, and the doctor at U of M ordered 2 more units based on his blood level for his thursday infusion. We timed it the day before he was going to Ohio State to make sure he would have a high enough blood level on friday to receive treatment.

When he has gotten a transfusion at Ohio State they always give him Tylenol and Benadryl before the transfusion. Apparently this helps to minimize allergic reactions to the new blood being transfused. When the nurse came in to give him meds, she had only Tylenol. Mike questioned her on this. She acknowledged that usually she gives Benadryl with the Tylenol, but no order so no Benadryl. This is only my opinion, but wouldn’t you question this order, if it was unusual? I ask you this, because guess what? When they started the second unit, Mike experienced an allergic reaction. He got warm, itchy, and very flush. I noticed it, got the nurses attention, and suddenly there were 5 people in the room. They quickly injected him with Benadryl, and he felt better immediately. However, this meant that the blood had to go back to the blood bank, and go through testing etc before he could get the second unit. The nurse quickly told us it could take up to 4 hours for this to be resolved. It was already 7pm when this happened. We made the decision anyone would make. We opted not to get the second unit. The cancer center closes around 8pm, he wouldn’t have gotten the second unit anyhow.

I understand hospitals are made up of people, and they make mistakes. However, this was an obvious mistake that could have cost my husband at the worst his place in the trial, and at best he is still low on blood. Shouldn’t someone beside Mike have to pay for these mistakes at least some of the time?

Enough on that, but understand these kind of things happen all the time. That is why when people contact me through this blog, and ask me for advice the first thing I tell them is have an extra pair of eyes watching everything! I just feel that they are too busy at U of M. Mike is just a number, and they are just going through the motions. Maybe it is just n comparison to the treatment we get at Ohio State which is top notch.

Anyhow, we got home Thursday night after 7 hours at U of M, and got up at 5 am on Friday and went on to Ohio State. Mike was able to get treatment, and we talked to our doctor there about this blood level issue, and Mikes fear that he will be removed from the trial. She explained to us that they really believe the blood level issue is due to the multiple ulcers in Mikes stomach, and not due to the keytruda, and that they will do everything they can to keep him in the trial as long as he getting help from the Keytruda. This drug is being reviewed right now for fast tracking approval for pancreatic cancer by the FDA.

What a relief. Let me say that again, what a relief.

Mike had scans after treatment, and unless we hear from the doctor this week, the results are stable. She has to give us the results in person, so if the results are bad, we will be getting a phone call from her to come to Ohio State early. At this point, no phone call is good news.

Despite all of the side effects, like edema, lack of appetite, pain at the tumor site, and serious fatigue Mike is hanging in there. For those who are his facebook friends, he has been expressing weariness on his page lately. He has been fighting this fight with a good attitude for a long long time. He is exhausted from it. I am a very sensitive person, and when he gets really down, it makes me really upset inside. I am trying really hard to just sit with it. My natural thing is to try to cheer him up, to make him feel better. You know what though? It is ok to be down sometimes. He has been dealing with really bad stuff. He was diagnosed the first time with cancer at age 30. He beat the odds then, being one of only 4% to actually survive this long with pancreatic cancer. Cholanagiocarcinoma has almost killed him. It’s normal to get weary of the struggle. We have to find ways to minimize our stress, fatigue, and to remain positive.

To combat some of the road fatigue, we have decided to spend time this summer making our Ohio State trips weekend getaways. I bought a little glamper last fall, and although I am no camper by any means, we are going to take it to some camp grounds between here and Ohio, and to try to make our trips to Ohio State a little less brutal. This should help break up our travel schedule, which has been excruciating as you can imagine.

I so appreciate your kind messages of support, your emails reaching out to me with your family struggles with this disease, and all of the other support you give our family!

Anne

One Comment

  1. Love you Anne. Your compassion and strength are a true gift!! Sending you good energy! Just think of those people we met whose main crisis was the length of their pants or if color matched!

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