Full disclosure: I am not eating as well as I should be. Though I am a nutritionist, the past week has seen me skipping breakfast, eating chocolate covered graham crackers and
drinking diet coke. Last night some family went out for Mexican food and I had them bring me back nachos with beans and guacamole. For dinner. At 10pm. Yikes. After eating, I went back in to see Mom and she asked what I had for dinner. I admitted that it was a bad choice, but she sort of got fixated on it. I told her I had plenty of leftovers and would be happy to give her some beans and guacamole, but she decided to wait until tomorrow. So I brought it home and figured I'd bring it for her for lunch today. Well, at 4am, she woke up with an insatiable hankering for Mexican food. She and my dad were awake from 4-7am trying to get something that would satisfy. Finally, the cafeteria opened and they ordered something, but by that time, she was exhausted and fell fast asleep. They both did. And then, her radiation treatment that was originally scheduled at 3pm was pushed to 10am, which wasn't communicated. So, they were sound asleep when the technicians came to get them and they rushed for treatment. In the rush, Mom didn't get her pre-radiation pain medication. So, by 11:30 when I arrived at the hospital (with leftover nachos), she was in a lot of pain. Ross gave her a great massage that she raved about for the rest of the day, and eventually the nurses got her pain medication caught up, but it was a reminder for all of us that she needs a little pre-funk before radiation.
Luckily, that was all of the treatment on the agenda today. And I stuck to my guns and vastly limited the people who got to see her. She still had plenty of visitors, but they were well spaced out and three at a time, max. She got in an awesome nap in the evening in addition to the in and out sleeping that goes on during the day. I'm hopeful that she'll feel better tomorrow after having a restful day today.
Tomorrow will be her first chemotherapy treatment. It will be administered via the Ommaya Reservoir that was implanted a couple of days ago. The oncologist told us the only side effect is headache, which she already has. She shouldn't feel nauseous or otherwise uncomfortable. Fingers crossed for an easy treatment.
Other notes on today:
- A dietitian finally came up to ask about her eating habits. We told her she wasn't eating much at all and they ordered a protein shake for her that she LOVES. Super loves. She even called it the best thing ever and asked if she could buy them at the grocery store.
- Her vision is almost completely gone.
- Today was the first day she's been disoriented at all. It was brief, but she got confused this morning in the radiation department and my dad had to explain why she was there. She also had a moment where she was telling me something about Hillary Clinton that I couldn't follow, but that may have been a dream. She also had several moments of stellar memory and put us all to shame in recalling family stories
- She LOVES the blog comments and asks for them to be read to her. I also read her all of the people who sent their love via Facebook (mostly people I went to middle and high school with and haven't seen in 10 years) and she was so touched-of course she remembers them all.
- She thanked Gary for coming to town and being a support for me; she told him that she knew that I needed the support and was so happy that he is in my life.Then she told him to send her love to his parents. She really is the sweetest person around.
- She got her Mexican food! I brought in the leftover nachos, scraped the beans out, mashed them up with the guacamole and that was lunch. She said it wasn't the best Mexican food ever, but it hit the spot.
Dear Aynsley and Family,
ReplyDeleteI wake up every morning and the first thing I do is to check and see if there's a new blog entry. When I read that Flynne enjoys hearing people's comments, I decided I had to post and tell you how much I'm thinking of you all every single day. Of course, I wish none of you were having to go through this, but it's amazing and beautiful to watch a family come together and care for one another. Please know that I am sending you all my love and positive thoughts.
Much love to everyone,
Alex V
Hi love! And family. Tell your mom I'm sending her tons of love and that she has been in my dreams almost everynight. I'm being treated Sunday with Nancy and will tell Nancy I am setting some healing intentions for you ALL during the treatment!
ReplyDeleteLove and Light, Beth
You and the family are in my thoughts daily. Sometimes it is difficult to find words to express moments such as the ones you all are experiencing. However you seem to have the most truthful words to reflect the emotions and experiences you and the family are treading through. Thank you for sharing your somatic and personal experiences in such a raw form...you have incredible courage!
ReplyDeleteI often find metaphors with the ocean to help me so this one is the one, I call upon frequently:
"We continue to swim in unknown waters, navigating the storms and soaking up the sunlit days. There are many moments where our sailboat gets swept up by the ocean storms, but we always manage to steer our way back to shore. We all try to maintain enough hope to withstand the strong winds from the typhoons, but there are times when they knock us over."
As you have mentioned in your blog...self care and self care.
Hugs and Love to all of you!!!!
Be well,
Marika
Hi Flynn,
ReplyDeleteI read the wonderful blog that Aynsley has posted, and you shall continually be in my prayers. I think it's super that you ate some Mexican food that tasted pretty good. I pray that your doctors not only treat you well, but that they also give their guidance and support to you, Aynsley, Ross, and Marc.
I pray for your well being and am glad to know that you are surrounded by the love of your kids. I pray that you recover soon and regain your strength. You are incredibly courageous and that's why you've maintained your clarity.
My ex wife, Frances, fully recovered from Stage III breast cancer which was diagnosed back in 1994. She had a great doctor who used aggressive chemotherapy and radiation, and she has been in remission ever since. What Anysley writes to all of us in her blog speaks very well of your doctors, and the tender care she has given you.
Please know that you are in my prayers, and go easy on the salsa & chili! I shall continue following the blog to see how you are doing.
With hope and shalom,
Jeff Heller
I sent email to Flynn's gmail account.
ReplyDeletePlease know that I'm praying for all
of you.
Jon Heller
Dear Ainsley: Thank you so much for blogging at the end of your roller coaster day. I cannot imagine the emotional hell you are going through, and the self-discipline and strength it takes to recap these nightmare days, but all I can say is that your blog is becoming a lifeline for your mom’s friends. We cannot thank you enough. Suzanne Skinner
ReplyDeleteDearest Flynne: Next time you crave Mexican my dear, please, please call me. I have not “come out” book club about this, but for the past year or so I have become obsessed with local taco trucks and hole-in-the-wall Mexican joints. A friend of mine from Detroit who shares this craving jokes that we should pen the local guide. Call me—I deliver and the tip will be on me! We all love you my dear and will stalk all those innocent taco truck cooks to do whatever we can to keep calories in you to fuel the incredible fight you are waging. A burrito fueled Flynne will indubitably conquer anything, including this tempest. I have pulled out my old college poetry books in what is probably a vain search for wise words to buttress you through this unfathomable ordeal. I don’t know poetry, and don’t understand the little I have read, so forgive me this choice, unless you like it.
In a Dark Time by Theodore Roethke
In a dark time, the eye begins to see,
I meet my shadow in the deepening shade;
I hear my echo in the echoing wood-
A lord of nature weeping to a tree.
I live between the heron and the wren,
Beasts of the hill and serpents of the den.
What’s madness but nobility of the soul
At odds with circumstance? The day’s on fire!
I know the purity of pure despair
The shadow pinned against a sweating wall.
That place among the rocks-is it a cave,
Or a winding path? The edge is what I have.
Dark, dark my light and darker my desire.
My soul, like some heart-maddened summer fly,
Keeps buzzing at the sill. Which I is I?
A fallen man, I climb out of my fear.
The mind enters itself, and God the mind,
And one is One, free in the tearing wind.
You will be free from this terrible curse Flynne, you will. You are climbing out of this morass and we are belaying you from above and below. All my love, Suzanne
Dear Flynn and family,
ReplyDeleteI am so sorry you are faced with this enormous challenge. After reading the blog I see how incredibly courageous and strong you all are. Know that my friends and I are sending you lots of love and healing energy. You are in my thoughts daily.
an aside:
I played my violin on New years Eve and it occurred to me where I got the cloth rag I use for it's protection in the case. It's one of Ross's diapers! it made me smile, having something so silly (yet useful)of yours!
I hope your appetite and strength continue to grow. I'm so glad you have such a great support system, so many people love and care about you. Not surprising. You get what you give and you've given a lot.
I look forward to reading more good news in your blog. :)
lots of love and hugs,
Jodi (Zeisel!)