Thank you Robbie for the very descriptive word.
Gail writing again.
Mondayness. n. describes the feeling of overwhelm that arrives at the beginning of the week or accompanies any new venture.
That certainly describes today quite accurately.
Cathi put together a list of things she wanted to discuss with the medical team. When we arrived at the clinic today, the list came out and Cathi started looking for answers. When is the PET scan? When does the next round of Revlamid begin? Will there be another round of chemotherapy? Is there another Bone Marrow Biopsy schedules? Why is there still nausea even though chemo has been over for a couple of weeks? WHAT IS THE TREATMENT PLAN? IS there a treatment plan?
These questions have been accumulating for a while, but there has been such attention being paid to the day-to-day routine of "let's get through today first" that the questions have been pushed aside. Until now.
Neither the nurse practitioner nor the case coordinator had any real answers for Cathi. That lack of info has left Cathi in the dark about the future, creating a lot of anxiety. Since the beginning of the AML ordeal, there has always been a plan. The medical team knew what they were dealing with, what to do, when to do it. Chloroma is different. It is rare and it was not on anyone's radar to have a plan. Cathi was able to communicate her frustration very clearly today.
Cathi now has an appointment with Dr. McGuirk (the head of her medical team) on Tuesday early afternoon. She is expecting to get a lot of information about what the treatment for chloroma looks like. It might be good news. It might be bad news. But it will be more than what she has at this moment. Today, it is a distinct feeling of helplessness since she has no idea what any of the medical team has on the plan for the next steps.
She now has a plan to get a plan. It is a step forward.
There was positive news today with the blood work: the potassium is in the normal range. As is the platelets. Most of the other tests are either already at normal or very close to it. This is very good news - she did not have to have any IV supplements today and her next scheduled lab appointment is Wednesday.
The nausea is slowly abating and Cathi has been able to eat a lot more than just a few days ago. She lost nearly 30 pounds over the last few weeks. Time to get some meat back on those bones so I'm working at making appetizing food for her to eat. She likes eggs. I can cook eggs. She likes sherbet. I can scoop it into a bowl. She likes smoothies. I can work the blender. I hope she likes my cooking. (I'm kidding. I know how to use the microwave too.)
The pictures Cathi has been getting of her beautiful grand babies have been coming in regularly. Those are two incredibly adorable children, Harrison and Ella. They will be here to visit (with their parents Conor and Annie) in about 10 days. It is on the calendar in really big handwriting for Cathi to see and plan for.
Having plans is a very good thing.
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8 comments:
Can't wait to taste some of Gail' cooking! Hang in there cathi, Mcguirk will have your answers. I think i volunteered for veggie, but maybe u need some xtra desserts too. See u tomorrow!
Anything toward some plan is better than no plan.
Raw fruits and vegetable juices are important for healing, lots of living nutrients.
If I was nearby I'd juice some things for you.
Know instead that I'm praying.
Kudos for your boldness and question list.
Yes, a plan helps you feel you are fighting this disease and not just waiting for it to destroy you! I have been praying for you Cathi, and am so thankful you have a devoted cousin in Gail to help you through! Remember that NO question is a DUMB question as you are battling. I pray God will continue to give you boldness, strength, healing, and a sense of his love!
Hi Cathi! I want you to know that you continue to be in my prayers. I am grateful that Gail has shared you with us all. You are an inspiration to all that have had the opportunity to read your story. I look forward to hearing that you have beat this mean disease!!! Wishing you health and happiness... Wanee
I've had Gail's cooking and I have to say that it is very good. Cathi, you're in good hands. Let your friends and family help you as much as they can and as much as you can stand it. We are all sending positive energy your way!
How did it go with Dr McGuirk? Bet you didn't let him wriggle off the hook as far as answers are concerned.
Hope the heat's abated a little in KC - I heard you were having record temperatures.
Keep spoiling yourself with anything that whets your appetite.
lots of love #2 GOT
hi Cathi. hope you got some good news on tuesday. just reminding you that i am still here and available. think of you often. sending love and light your way. jan
Hmmm... "Cathi was able to communicate her frustration very clearly today." Oh I can only imagine!! I can't help but recall your ability to "communicate your frustration" over a certain Eagle Board chair or other crazy quirks of the BSA world.
Sometimes those docs need a kick in the pants to communicate with the patient, so don't let up. I hope you got some good info yesterday.
I want another hug at a district dinner again, so you're getting all my wishin' and hopin' and prayin' (except for the ones I'm sending over to Brant Tidwell).
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