I'm not really sure of where to begin today. The week has been complicated, difficult, exhausting, and emotional. Tomorrow promises to be more of the same... a perfect ending to a long tedious week.
As you settle into cancer, you think you'll settle into the reality of it...and maybe you do at some level, but at a much deeper level.... it never really becomes "reality". Somehow you are transported into a different reality, an alter-reality. Highs are exceptionally high, lows are exceptionally low, and the in between tends to numb you. You become more easily overwhelmed by acts of kindness, and equally overwhelmed or angry with moments of pettiness and self-centered behavior.
Roger has had a bad week as you've followed in previous posts. I have also had a bad week. The days aren't long enough to get everything done for the caregiver yet the days are too long to a person suffering through the "poisoning" of chemo. I've "lost" Roger this week. Any human interaction is minimal and most likely growling. You have to remind yourself repeatedly to not take it personally. When we got home from the oncology center today, he spent most of the late afternoon upstairs in bed.
Swallowing is still difficult. We have a new prescription that seems to help with the throat and esophagus swelling. We had a different prescription mentioned previously, Mary's Magic Potion....Roger HATED IT. Thought it tasted disgusting, made faces, whined, stuck his tongue out, etc. As he was experiencing the difficulty in swallowing I tried to nudge him to take some of the MMPotion. The very adult response I received was, "NO. I'm not having any. It tastes terrible. YOU drink some first and then I'll have some if you think its ok."......WWWHHHHAAATTTT????????? My adult response back was "WHAT? ARE YOU SIX YEARS OLD?????!!!!!" He held fast, never budged. The compromise? The new prescription referenced immediately above. Me, drinks some first.....like I'm a negotiating with a six year old. Reeeealllyyyy.
The hiccuping is unrelenting. For those of you out there saying, "so what? what's a couple hiccups?" Try hiccuping non-stop for 48 hours...even when you try to sleep. There is no sleeping, there is no resting, its downright exhausting for both of us.
The good news today, as there has to be good news, right????? The good news is that tomorrow marks the END of chemo. The end!!!! Roger is expected to have another 4 days of radiation + or -. there is a possibly that there may be a few more treatments added depending on how Roger is doing next week. So chemo will be over. Yea!!!! Sadly that does not mean that the aftermath will stop....it will continue for an additional 2-3 weeks. Fortunately we kept a diary of how Roger felt during the first phase; that should help us "predict" the coming events.
As mentioned previously we are very worried about how he will be doing in the next couple weeks due to the radiation. We're not convinced that he'll get all the nutrients he needs. The liquids that he is willing to drink now includes...ICE TEA...and nothing else. Water hurts too much (????). Apple juice hurts too much...everything hurts too much. If I can get him to drink this new prescription, then his throat/esophagus are numbed and he's able to drink/eat more.
The journey today and yesterday included chance encounters with other cancer patients. Everyone is very good about being friendly and civil with one another yet there is always a big pink elephant in the room ("you have cancer? what are you 'in' for?"). You have every age group in the room, every nationality, every socio-economic level. There are husbands and wives, fathers/mothers with their children, friends with friends, and then the random few that are there by themselves. As we were sitting in the radiation area, we started talking to a woman who appeared to be a social worker for the latino community. She was obviously there with a petite woman of Hispanic decent. We've seen the two of them for several days this week. The are an interesting, gentle pair. You can feel and see the great care that the "social worker" gave to the "client/patient". This care washed over the room to any of us sitting there waiting for treatment. They greeted everyone with a smile and good morning. And, cheesy as it sounds, there was almost a soothing aura about the care giver/social worker. As her client was taken back for treatment, I had opportunity to speak with her further (Roger was already being given his radiation). The woman revealed that her client was "blissfully ignorant" due to the language barrier....the patient/client has pancreatic cancer. She was diagnosed 2 days before Patrick Swayze died (I'm not a celebrity monger but offer this as a point of reference). The social worker said they have no idea of how advanced the cancer, and she wasn't positive that the client knew what kind of cancer she had. Back to that concept of blissfully ignorant.... I wonder if you are ever really blissfully ignorant. Anyway it was a moment that made you stop and think and appreciate the life that you have no matter how difficult or challenging or frustrating. Back to that finding and keeping perspective.
Anyway, I'll have more for you tomorrow, Roger's last day of chemo...his bell ringing day. he is quietly snoring next to me. I hate to miss a few moments sleep when I can get them. Tomorrow I will give you an update about Roger's conversation with the Genetic Counselor today...weird.
Love to all. Keep your perspective and hold onto your friends and loved ones. ~ A
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