It's complicated!
Some days I have no energy, and simultaneously no brain power. Other days I have some energy and I try to get back on track with normal activities. And still other days I am scrambling to try to play catch-up and get life caught up before the next treatment.
This is the pattern I am noticing
Treatment day(Friday) - a few hours of functioning afterward but I begin to feel "green" and later get shaky and gross
Day 2 - feel somewhat cruddy, but can do simple household stuff. I can eat if I stay on top of my nausea meds
Day 3 - sleep a lot, feel gross, everything wears me out and I can't focus on anything
Day 4 - feel a little like I was run over by a truck, but once I get moving I can function for short periods of time, brain is still fuzzy
Day 5 - Feel more normal, but have to keep it low-key or I pay for it in the days to come
Day 6 - Feel pretty normal with lingering food aversions, but have to keep it low-key or I pay for it in the days to come
Day 7 thru 10 - Fairly normal but same as above (this normalcy is tricky because this is when my cell counts are the lowest, so even though I feel ok, I am highly susceptible to infection so I should be laying low)
Day 11 thru 13 - Feel really normal other than the odd symptoms
So I have checked treatment #2 and #3 off the list, and I am grateful that #4 will be my last of the AC chemo with Neulasta. I am also worried about the second phase of treatment, Taxol weekly plus hormone blockers every three weeks. I keep hearing the T is less harsh than the AC.
Great! But weekly? This throws my day by day knowledge about how to accommodate the chemo totally out the window, and this is 12 straight weeks!!
Anyhow, not to be too doom and gloom, I will be excited to be done with AC, but I'm hesitant to make grand plans for the next few months while I see what is in store.
I did get a large needle in my left buttock last week and it was surprisingly easy. My most recent treatment was in Binghamton with Dr. Kloss and he recommended a shot of Lupron to shut my ovaries down, essentially putting me into menopause. Hence the shot in the butt.
I am happy to be doing treatment in Binghamton, so far the office-patient communication has been better already. And Dr. Kloss has been friendly, but treated me like I was intelligent enough to hear the reasons behind the treatments, instead of treating me like I don't need to know the "why" behind different decisions. He has recommended Dr. Janet Muhich as a local breast surgeon who he has great confidence in and I have heard other good reviews of her as well, so we may consider working with her. I have also been told great things about Dr. Anne, another local surgeon who deals exclusively with breasts, but then others have said that the only part of their treatment they did in NYC was the surgery. I have research and some meet and greets (weird visual of boobs shaking hands with doctors) to do!
Here's my list of things you ought to know before you undergo chemo:
- Don't think you will get caught up on reading and paperwork - your brain will not want to focus and group discussions will become frustrating because there will be many days you can't follow the conversation
- Buy a humidifier to put next to your bed. Your sinuses will hurt, a lot. (And you will forever feel like you need to pick boogers)
- Limit the amount of "Anti-Cancer" health advice you try to absorb. It has the potential to make you more depressed when you feel like you can't juggle all the balls while you are fending of nausea, fatigue and overall blah. I love learning about alternative medicine and food as the source of health, but I struggle with balancing the do-able aspects with those approaches, vs the unattainable ultra-granola lifestyle I don't have the time to achieve. Yes, I can make my own yogurt, but it takes time and then you get into...my own bread, my own shampoo, my own chicken nuggets, my own toothpaste, my own toilet paper, my own astragalus extract. I have a Naturopath that is thankfully very down to earth and will tell you things like "eat saltines all day if you can't stomach anything else and then we will use greens powder when you can" or "go ahead and use Zantac to stop the heartburn and then use the natural stuff to try to keep it from coming back."
- Stock up on bowel movement supplies. You will need something, whether it's Imodium, stool softener, prune juice, hemorrhoid cream, tucks wipes, homemade suppositories (I haven't tried but there are recipes on the internet), or a sitz bath. I am not stranger to intestinal discomfort, but surprisingly I experienced very little intestinal discomfort. On the other hand, I have spent nights awake with tears in my eyes because of the effects of the chemo on my digestive health, I'll leave it at that. If you think hemorrhoids, diarrhea and constipation are the only types of bowel issues, you are horribly mistaken!!
- Find something to drink besides plain water, because you probably won't feel like drinking water. But you must! Ben can convince me to drink seltzer and orange juice, but I shouldn't be drinking juice that much, so I've been boiling strawberries(my low cell counts mean I'm not supposed to have fruit or veggies that are raw or don't have a peel) and adding a dash of lemon or lime and then serving over ice. I'm still not excited to drink as much as I'm supposed to, but it's helping.
- Also think about using a big jug so you, or someone else, can monitor how much you are truly drinking in a day.
- The mental agony of marking off treatments on the calendar and thinking about the months to come will often be more troubling than the days of nausea and fatigue.
- Indigestion is inevitable
- Find a spouse that doesn't come in the house smelling like urea, sour milk or cat piss. Sensitivity to smells is far worse than when I was pregnant, and I was really sensitive to smells during my pregnancies. I can't even tolerate foods that rode in the car with a bar of soap because I feel like everything tastes like soap.
- You can never have too many hats. I'm not a hat person, but I haven't quite made the leap to going to town with my bald head. A variety of hats/scarves will help you feel semi-presentable when you have to leave home. I even struggle wandering around the farm without a hat because I feel like it's too shocking for our employees or whatever milk truck driver, mailman or salesperson pulls in our driveway.
- Hair loss may start in a variety of areas, just sayin'
- Buy some extra thermometers. I have had some feverish days, but yesterday I needed to check my temp after going from hot to cold to hot(a low fever can be serious when you have low cell counts.) The thermometer was dead. I didn't feel like scouring the house for another thermometer and the one Ben was offering from the barn wasn't going anywhere near my mouth. Eventually I hiked upstairs and found our second thermometer and ended up have a very mild elevated temp that by babying all night and limiting activity today I think I have beat.
We said goodbye to Grandma Joyce last week and she shared that dark, sometimes biting humor, that my Mom's family is so fond of. My Aunt Stacie shared some very special thoughts during the funeral and she had Ben laughing/crying so hard he was snorting. It had something to do with ashes in a cool whip container, marrying anti-social people and hoarding twist ties. Anyhow, Grandma is at peace and can release the decades of struggles that she carried in private. My Mom is convinced that my Grandmother had something to do with a very loud cardinal screeching outside Punks Bar on Sunday morning.
We have had so much help with the kids, food, errands and work. Thank you to everyone! And after many requests from friends and family, here is the meal planning site so we don't end up with quite so much in the fridge all at once. Here's the link
and the password is Quinn
My face is getting flush again and all the strawberry water is making me a little uncomfortable, so farewell for now!
