Yesterday was a quiet day, relatively speaking. It was one of the quietest days we’ve had in a long time.
We didn’t have to go anywhere. It snowed all Saturday and Sunday. I’m not sure how many inches of snow we got. I heard that the roads were awful.
I got the day’s firewood brought in and washed, dried, and folded clothes. Our friends in Texas had bought us another gift certificate for Chubby’s Cafe so after shoveling our sidewalks, EJ walked through the snow to pickup the takeout lunch I had called in. The owners told EJ that every day people ask if they have any updates about JJ.
We settled in for a Doctor Who Marathon. Doctor Who doesn’t air in our area, so I had no idea what it was all about, other than little snippets of information I read about here and there. But then we got Netflix, and we could finally watch Doctor Who, and after an episode or two we were totally hooked. I like Science Fiction programs anyway, so it wasn’t all that surprising I’d get hooked. But still.
I like fantasy stories because they are about princes and princesses, and quests and fighting dragons, and the battle between good and evil, which I think is an echo of the “real” story of the true King who went on a quest to save his princess from the dragon. I like Science Fiction stories because they often deal with questions such as who we are, and why we are here, and what does it mean to be human? Science Fiction can be very deep.
I have found that TV often helps distract my mind when I am sick, so I don’t focus on the “not feeling well” so much. So I thought that watching Doctor Who could also help JJ keep his mind off his suffering, as well. Doctor Who is fun, scary, and extremely interesting, and filled with awesome quotable quotes all at the same time. I’ve read thousands of stories and can usually guess endings, but Doctor Who stories are so creative that I can rarely guess where they will end up. Have I told you that we are totally, completely hooked on Who?
JJ didn’t feel well yesterday, but he didn’t feel quite as bad as the door before. “Not quite as bad” is still not good, and he was restless and unsettled. He said he dreads going back for more chemotherapy. I reminded him that he only has a two-hour session on Monday (which is today) and then there will be no chemo for the rest of the week. Later he said that he will endure what he must and it’s ok. He’s an amazing young man, full of courage. I am so proud of him.
Yesterday a Facebook friend who was an oncology nurse and also suffered from cancer wrote to give me some tips in dealing with side effects. Some of the tips we already know about, and the other tips I hope to ask our oncologist about. There are different Chemo drugs and they can be affected by herbs or other medications, so we have to discuss anything we use with our oncologist. One of the tips is:
“All chemos are excreted in bodily fluids; one of my drugs was known to be excreted in tears. So, to protect my eyes, Dr K. had me buy a bottle of artificial tears and carry it with me. I used it whenever my eyes started to sting or feel scratchy, plus always at bedtime and whenever I woke up at night. My eye checkup, after chemo finished, showed that I had no damage to my eyes at all from the chemo.”
I think it’s horrifying that even tears can be toxic. Tears ought not to be toxic! They shouldn’t have to be artificial. They shouldn’t damage eyes. It just seems wrong.
Sometimes I look at my son, and he seems so young and vulnerable, and my heart breaks. It’s very difficult to have a child–even an 18 year-old child–suffer from a severe illness. It’s difficult to see him suffering and not be able to lift it from him. It’s difficult to ease the “not feeling good” when nothing really eases it. It’s difficult to fix meals when nothing tastes good. It’s difficult when he dreads a procedure to tell him that he has to endure it. It’s difficult when he curls up on the couch and asks, “Mom, will you pray for me, that I will feel better?”
There is faith and laughter and hope and love and compassion and closeness and strength mixed through the tears and exhaustion and fears and pain as well. Having the one doesn’t mean the other doesn’t exist. There are co-existing layers.
The couch was too near the woodstove for JJ’s comfort so that he groaned about being too hot. Yet, if we let the fire go out, it gets too chilly in the house. The loveseat was far enough from the fire, but too short to be comfortable. So last night EJ and I switched the location of the couch and loveseat. The arrangement doesn’t look as good as before, but it’s more comfy for JJ, and he can see the birdfeeders better. So it’s all good. Right now, all our focus and energy is spent trying to help JJ.
Sometimes JJ apologizes for “putting you through all this.” I tell him that I know that it’s not easy to have to accept help but everyone goes through times of weakness when they need to be helped and cared for. But those times aren’t forever, and when he gets better, he can help others who are going through difficult times. “Besides,” I say with a touch of humor, “if it makes you feel better, when you get better you can take back all your chores. AND you can take care of your Dad and me when we get old and feeble.”
I think it’s not easy to know what to say or do when family or friends are going through a crisis. I know that a person can feel helpless about how to help and fear saying or doing the wrong thing. We probably all have horror stories about people who said awfully insensitive things–or we shudder at the memories of ourselves saying them. Yesterday a friend shared an article with me that wonderfully explained how to help. I think these sorts of things are wonderful because they give guidelines to give us direction in how to help others. I thought I’d share an excerpt from the article, although it’s well worth reading the whole article if you have time. You can read the entire thing by clicking on the name of the article.
How Not to Say the Wrong Thing
…Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.
Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie’s aneurysm, that’s Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie’s aneurysm, that was Katie’s husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan’s patients found it useful to tape it to her refrigerator.
Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you’re going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, “I’m sorry” or “This must really be hard for you” or “Can I bring you a pot roast?” Don’t say, “You should hear what happened to me” or “Here’s what I would do if I were you.” And don’t say, “This is really bringing me down.”
If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It’s a perfectly normal response. Just do it to someone in a bigger ring…”
Comfort IN, dump OUT.
JJ has chemotherapy this afternoon for two hours. Only two hours, I tell him. Then no chemo for the rest of the week. Tomorrow there is an appointment with the oncologist to discuss how it’s all going.
Teri what it must be a relief for JJ that he has the week off from chemo. I hope he can have some strength back in that time. You are all amazing and I love you very much. Take care and hug that awesome guy for me. And for you and EJ also ((((((hugs)))))))
I gave JJ a hug and he asked, “Who is this from?” I said “Simone,” and he said to tell you thank you very much. He appreciated it.
We love you too, Simone!
I’m so proud if JJ he is holding on every day…….and you are too special people all three if you. Enjoy the quiet time this week after the visit to the oncologist………((((hugs))))) ❤
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