I am writing this from yet another room in MD Anderson. Mom and I have been here since 8:00 a.m., so that makes it about 15 and a half hours here. The day started out okay – we arrived for the paracentesis, did blood work/urine sample (okay, “we” didn’t do that part), they drained 4 liters of fluid from Mom’s belly (quick way to lose 5 pounds!), and then we went up to the Psych department. The psychiatrist said Mom was not depressed nor did she have any mental disease of any kind. (S said maybe he should have diagnosed her “unwilling to coöperate!”)

We ate lunch – yogurt parfait and orange juice for Mom, Greek pasta salad and some espresso sliders that I thought would be good but really weren’t for me – and then went up to the Center for Targeted Therapy for her 2:00 appointment. We were on time, I swear. We waited in the waiting room for 1 1/2 hours, and then went back to an exam room (after Mom had her vital signs checked for the umpteenth time today, and yes, Spellcheck, I know that is in the passive voice.)

{While we were in the waiting room, this nice lady dropped by and asked if she could make an origami paper crane for us. Apparently, there are volunteers who come do arts and crafts with adults in the waiting areas. She said they are doing the “Thousand Paper Cranes” project, and they make cranes for patients. Cranes are a symbol of hope and healing, which I knew from reading the book Sadako and the Thousand Paper Cranes. As I recall, Sadako tried to make a thousand paper cranes because she thought if she did, she would be cured of her cancer she got from the bombing in Hiroshima, but she died before she could finish, which I told Mom made it kind of not that uplifting a story. Then another volunteer came by with a beverage cart and offered us coffee, tea, or hot chocolate. Mom got some hot chocolate. And a pretty blue and white paper crane. Party favors!}

So (like Dr. S says) skip, skip, skip and Dr. T (not her regular Targeted Therapy doctor) said she was very concerned about Mom’s high creatanine level. We could see the line graph showing that Mom’s level fluctuated a little up until 3/11 and then on 3/15, she started taking the Targeted Therapy drug, XL 184, and it has steadily increased in the two weeks since. It was 1.8 ish last Thursday when Dr. S saw her, and today it was 2.4ish. Normal is 1. So all of a sudden, it’s not the calcium that’s a concern, it’s the creatanine, and the doctor is saying we need to stop the XL 184, cut back on her regular meds, and try to “salvage her kidneys.” If the creatanine goes down, the doctor will consider putting her back on XL 184. If it doesn’t, well, I don’t know what we’ll do. The doctor ordered IV fluids every day this week with blood work to monitor the creatanine and more appointments with the doctors in Targeted Therapy.

Mom sat next to me, stoic, betraying not one trace of emotion. Grappling with the gravity of what the doctor had  just said, I asked the Targeted Therapy nurse how long the infusion would be tonight and she said 6 hours. And I cried. Maybe it was just plain selfish, but I immediately thought of how I was going to do it – get her settled in, go home to feed/walk Coco, come back here at midnight, try to get some sleep, and then teach in the morning. I am not one of those people who does lack of sleep well.

Apparently, Mom was annoyed/embarrassed/disappointed by my reaction. She said I should “learn to get the facts straight” and not react so emotionally. Learn to get the fact straight??? Really??? I explained to her that the doctors were taking her off the clinical trial drug that is basically one of only two treatments that might prolong her life a little bit because HER KIDNEYS WERE NOT FUNCTIONING PROPERLY! (Only I said this very calm-like.)

She couldn’t understand why I had reacted the way I did, I couldn’t understand why she didn’t understand, my mind was reeling with all the repercussions, and then I cried harder. I am not a pretty crier. I said (okay,  exclaimed) I needed a break and walked briskly out of the room and accidentally (I swear) let the door slam a little. Which really pissed Mom off.

So, skip, skip, skip, here we are at 12:15 the day after we arrived for our first appointment. And I think I have a freakin’ stye in my left eye.

Edited to add: Had to laugh – Spellcheck inserted diacritical marks above coöperate and told me the term “lady” was “bias language” and I should change it to “woman.”

Edited again to add: Oh, and – news flash! Ricky Martin is gay. Is there anyone in the world who is shocked by this announcement???

5 thoughts on “Stye

  1. Thanks for reading, RM. I have been thinking a lot about the people who have walked this path – or a variation thereof, like your mom – before me and am grateful for all who walk beside me now.

  2. Words don’t quite cut it…Our anger at the situation is raw. I hope you can feel the support…we love you all and are very concerned. What size shoe does Aunt K wear?

    1. I can absolutely feel the support. Today, when we were visiting with the Supportive Care doctors, Mom said something like, we have a small family, but we have lots of friends – they’re our family, too. I made sure the doctors knew that we felt lucky – since we live here, our support system is here. We haven’t traveled a long way without our people!

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