I've Learned That I Still Have A Lot To Learn
It seems that every chemo cycle comes with it's own set of lessons. The 42 days of chemo in Houston went fine. The first round at home came with a lesson on bowel management. The second round at home was over a week ago. I had learned enough to start the stool softener early. That part was managed well this time.
Jane and Poppy arrived on Friday for the July 4 weekend and I was feeling fine. We went to the pool on Saturday and that's when everything sort of fell apart. In retrospect, I guess I let myself get dehydrated and zapped from the sun. I laid down to nap and then failed to make sure I ate sufficiently. With the chemo I'm not that hungry so I feel like I'm eating enough. Between the pills, glucose checks, and other required maintenance, I lose track of what I'm supposed to be doing. Add in that Jason was absent because of a project deadline (combined with his own procrastination), and the result was barely being up for a few days. Jane didn't know what to do for me because I couldn't tell her. It was sort of like I had the flu-- I was out of it and not thinking about the food or fluids. Jane also had her hands full with Poppy and Aidan. By Monday I had at least gotten myself hydrated and realized that this was part of the problem. I figured I was getting back to normal.
Fast forward to Wednesday. Aidan woke me abruptly because I was running late for a doctor's appointment. I went into the bathroom, felt faint, and sat down on my bench. I woke up and thought, "Wow, my face really hurts but it feels good on this cold tile." And then it dawned on me that something about that thought was off. I opened my eyes to see that I was lying face down on the bathroom tile. I couldn't have fallen that far because the bench isn't very high, but I must have hit pretty hard because I have the most painful black eye ever! Some of you may have seen the fashion shots on Facebook.
So then, of course, I had to go to my first appointment with the local oncologist with a black eye. Jason was with me and met the nurses, but had to leave just before the doctor came in because he had an appointment at work. When the doctor came in he kept asking me strange questions about why my husband left, is he supportive, what's he like, etc. He said he is interested in the support system but it was more intense than that. He also was obviously preoccupied with the black eye. It didn't occur to me until later that he was investigating whether I'm a battered spouse. Feel free to give Jason crap about it because even though I'm not battered, I totally blame him because he's not been taking the best care of me.
The next day Cassie came in and we were talking in the kitchen. She said she noticed I had stopped mid-sentence, she looked over, saw me going out, and caught me. Thank goodness she was there. After a talk with the doctor and Jason's thorough investigation, it turns out that no matter how full I feel and no matter how much the thought of eating makes me feel sick, this does not mean I'm getting enough calories. Therefore the doctor says he's not worried about my diet, but I have to check my calories to make absolutely sure that I'm getting enough calories for the day. He also gave us a goal. Again, I blame Jason because he's supposed to be my caregiver and he's been at work. He, of course, blames me because I'm supposed to be competent enough to take care of myself. I claim the brain tumor defense.
So, now we learn how to put in safeguards. I now have a schedule for both chemo and non-chemo days. It includes sleep times (to make sure I'm getting enough), medication times (to make sure they are spaced out correctly), exercise, glucose monitoring, etc. For Jason's part, he's has to stop procrastinating on projects, he has to plan ahead for chemo weeks, and he has to be more attentive. If only he'd have followed some rules before the cancer! This is my dream (if it works)!
So, yeah, here's to hoping that the next round of chemo has some easier lessons. I apparently need a 24 hour a day babysitter!
Comments (6)
I bet a baby sitter could be arranged! You have so many people who care about you and would gladly volunteer to take a shift! Hugs to you sweet Shannon!
Sure sounds like a supplemental Caregiver is a good idea at least during Chemo weeks. You're doing fine on your own actually as have learned so much about what your body can and cannot tolerate. I frankly don't see the "procrastination" changing to any degree as Jason has always had that as his escape to maintain sanity and doesn't identify that as significant. It is his norm. Hang in there, get a personal shopper and just try to have some fun. Love you. N.
Can you drink Ensure or other hi protein supplements to keep your calories up? Blacking out is scary. I am sure it is motivating to keep you on track. after I am over this cold I can help.
Some sort of temporary help--like on chemo weeks--sure sounds like a good idea. Anyway, one day at a time and keep reaching out to your friends. We are here to help.
Oh! How I wish I could be there for you. I am an expert hoverer (if that is even a word). It comes with the fact that I have two living children and want them to stay above ground, at least until I am under it! That sounds morbid, but it is true. I am not an evangelist, but I find myself praying for you so many times during the day. I have a lump in my throat, and can't seem to get rid of it. I understand that this first round with chemo is always the hardest to figure out, but please keep your face off that tile floor no matter how cool it feels. An ice bag can be just as effective. I am so grateful to be your friend. Reading each post gives me such strength, and has seriously cut down my whining. I can see this becoming a book nobody wants to put down, and I think you should do this when you get to feeling better. I hope that I can get to Texas to see you before the summer is over. I miss my friends in Lubbock and Oklahoma City, but only want to visit now (I had enough 109 degree weather when I was living there), not move back, as I so wanted to do the first year we lived in Virginia. The temperature here only gets to about 95 at its hottest, and we bought a house that I am in love with. This takes the pressure off of Joe now to find another job away from this paradise). However, Field has become friends with a young lady he went to high school with who now goes to law school in DC, so let's keep our fingers crossed that we will have more relatives to visit in that fine West Texas city. Thanks for your candid and honest approach at letting your friends in on your ordeal. I wouldn't want it any other way. I laugh at your references to Jason and can only see him battering students in Accounting Ethics. However, your time to rag will end once you get better, so take advantage of it now, haha! I hope you will plan on making a trip to this area in the coming years. Especially in the summertime. When the heat gets us down, it is only 10 minutes to Skyline drive and 15 degree cooler temps on the mountain, and you can't beat the view! We love you, Shannon.
Oh Shannon, the fainting is scary, but the fact that you never hit hard enough to lose that wonderful sense of humor...that's fabulous!! Much love!