done!

I had been posting weekly on hubby's journey, which was going well until week 5 when he developed the dreaded fever of more than 100.4. This resulted in a four day stay in the hospital and then a slight nose dive. I am not sure I would recommend being admitted to a teaching hospital again. There was a great deal of confusion and many mistakes along the way. For an unknown reason, he was placed on a cardiac diet...about 600 calories per meal, until I told the doctor that his nutritionist wanted him on 3000 calories daily. This occurred over the Labor day weekend so he had a break from treatment and rebounded well, again eating soft foods. Week six was actually pretty good.

He rang the bell yesterday. WHile he is currently suffering from a nasty sore on his tongue and tires easily, he was a trooper. He did not use a PEG or a feeding tube. He is currently on liquids and his preferred drink is a half glass of whole milk combined with a half glass of Starbucks bottled frappacino every few hours. He never got dehydrated and as of today, he lost only 15 pounds. After the hospital stay, the nutritionist told him that these last few weeks were tough, but willpower would need to be called upon. He needed to hear that. We were told both here and by the docs...hydrate, hydrate, hydrate....

What would we share with others starting this journey?

Get as much education as you can and this site was a blessing. I didn't post nearly as much as I read, but what I learned here prepared us for discussions with the docs. Hubby says that he could not have done this alone. I know that some people work while getting treatment and that many support people must also work to feed the house, but support is probably the most important thing hubby needed. He tried anything that we read about on this site that made sense and almost all of it worked. For those trying to get Nutrasal for dry mouth...still on back order. Hubby's strategy for not losing weight....not doing too much at all except playing Scatter Slots on his phone, winning and losing large amounts of (play) money. I think he has become addicted, but he correctly notes that it is simply mindless and gets his mind off his pain.

Ask, ask, and ask again. We asked questions constantly and honestly, I was surprised that some of them could not be answered. Prepare to be frustrated for the standard response "Everybody is different, so I can't really say." arrrgggghhhhh! There was one chemo nurse who really knew her stuff and was able to answr almost all of our questions, so she was a great resource. Keep all your documentation. Now that the bills are rolling in, we are finding that we were charged for doctors we have never seen, so navigating through these details is frustrating.

The pain is difficult for him and for me to watch. I ask him his pain level but what helped him was comparing it to other pain he has experienced. Was it as bad as the pain from his tonsils being removed? Kidney stones? THis gave him a reference for rating his pain and a sense of control as well. Even the grandkids ask him his pain level! (gotta love em).

From a caregiver standpoint, this is awful to watch and be part of. It is hard to watch someone you love be in pain and being very limited in what I can do. With a nasty mouth sore right now, he is comminicating in sign language and text message, preferring not to talk. THis was harder for me than I thought and it has been hard for him becuase he doesn't want to put this on me. We are both mental health therapists and we relied a great deal on our training which helped (You know....practice what we preach!).

Others on this site have said it, and I will confirm it.....it gets better. There are good days and bad days. We get through the bad days minute by minute sometimes and breathe on the good days, thankful for the reprieve. I  am personally amazed at the strength and courage of people who must submit themselves to treatment. Hubby as been brave,  and I will say that his sense of humor has been his strength. I think he is planning on painting the mask with a glow in the dark paint and wear it for halloween!

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