Crabby Old Lady and Cancer on TV
INTERESTING STUFF – 4 November 2017

Cancer Keeps You Busy

Chores have been piling up and I'm getting behind so this is really a day off for me but I thought I'd make quick mention of a couple of cancer-related surprises. Some of you who have greater experience with this “emperor of all maladies” (or other kinds of maladies) of which I am still an amateur, may have more to say about them than I do yet.

[Emperor of All Maladies is the title of a brilliant book by Siddhartha Mukherjee subtitled, “A Biography of Cancer” which won the Pulitzer Prize in 2011.]

BUSY
Among all the scary new stuff I learned after they told me I have cancer is how much time it would steal from me. I don't mean the years by which it may shorten my life. I mean the list of new items added to the normal daily routine. Here's a short list:

Counting out pills each week and putting them in those little daily box containers. (It takes two containers to accommodate all my pills.)

Remembering to take those pills and at the right times of day. (I have invented half a dozen ruses to remind myself.)

Keeping track of when those prescriptions need refilling.

Preparing six meals a day, shopping for them, cleaning up after them.

Drinking what feels like gallons of liquid a day.

Keeping up with side-effect prevention measures: hand and foot lotion, mouth rinses, etc.

Napping. I've never been a napper but the chemo makes me sleepy so I lose two or three hours a day to naps.

WEIGHT LOSS
This one's a joke, right? I've spent my entire life repeatedly losing the same 10-12 pounds (not to mention the ginormous 40 pounds I allowed to pile on and lost six years ago. Now I have the reverse problem – keeping weight on.

They weigh me every time I go to the chemo clinic and during the three weeks a month I'm having infusions, I lose weight. They told me early on that the disease requires more energy than a healthy body and now I know that chemo increases the use of energy too. So I am regularly admonished to eat more, eat more, eat more by the nurses and doctor.

I hereby offer my apologies to all the skinny people I've privately mocked over the years for complaining about how hard it is to keep their weight up. They were right - it's really hard to do.

Comments

Ronni, your collective work and life experiences are working to slay this uninvited Emperor.

You are organized, smart and strong.

Your sense of humour does not waver.

Keep on keeping on.

What doctafill said!!

What Florence said...

You're doing amazingly well, imo.

You are the gracious warrior conquering the monster. Don't let up. You are a hero. Please take care. You are not alone.

Yes, this applies to many of us as we grow older.
My friend Poolie has been fighting cancer for over a year now. Almost every week there is some new thing that slows her way down. We stop in for a few moments every evening and leave every night saddened.

I so appreciate you and your willingness to divulge what you know. It's no small task to think about what you know and experience, order it into cohesive paragraphs and write the words that invite us to read them.

Thank you,
Judy

Ronni. You CAN beat this. That Whipple and early detection was a God Send. Keep up the good fight and continue sharing. (I did a lot of web research today on subject to bring self up to speed!).

It seems that empathy comes with experience. It has been easy for many of us to pooh-pooh the effort of "keeping weight on". It occurs to me that ageism results from that very thing: lack of experience. It takes a bit of age (experience) to become aware and to develop empathy.

Importantly: You are helping the rest of us who have not yet faced such serious health issues. Hopefully, we are gaining from your experience.

With each day that you "keep on", just think (if you have a spare brain cell left over!) of how many of us want you to keep on keeping on.

Sending gentle hugs your way.

I like that refrain DoctaFil started: "Keep on keeping on!"

Once again, thank you for bringing us along on your journey.
We are all learning from it. We are all gaining new insights and perspective.

So, with the others, I also say, "keep on keeping on!"

That all sounds so familiar! Hard to believe it's all now two years behind me.

I had two pill boxes too (in the kitchen) and a third in the bathroom. Lists of when to take what were taped to the inside of the cabinet door. I often thought that if my mental capacity were the least bit impaired, I'd never have kept it all straight.

I lost weight too. Mainly because all my food tasted bad (or at least abnormal) and because often I was having to eat only stuff that was easy on my stomach. I welcomed the weight loss (20 lbs), but sadly it all came back. My problem was drinking enough. I always kept a drink at hand, but still ended up in the hospital one night due to dehydration. Thereafter I went to the infusion lab several times a week just for fluid infusions.

Also, you didn't list all the trips to the doctor, infusion lab, etc., and having to schedule everything around those, not to mention finding someone to drive you if you couldn't do it yourself. My drive was 45-60 min, one way. I came to think of it as just "commuting" to my "job" like anybody else (particularly when I got into the six weeks of daily radiation treatments). On my GPS I listed the address as "work."

Makes you wonder, doesn't it, how some people manage to parent and hold down jobs AND deal with cancer treament.

That pill counting is like a full time job. But I am amazed how how great your brain is working right now. You are an amazing woman! We are all learning so much from your experience.
Although I have experienced cancer with others. No one has been able to articulate their experiences day to day like you have. Many people just don't want to speak about it because it's scarey enough to get cancer as it is. I realize as you age cancer and other diseases are often chasing you. I don't know about anyone else but i know you are teaching me to be brave as you are so brave to meet each day.
Next year you will be looking for a diet to lose weight. That I am sure of.

Illness does steal your time. Not only in dealing with the medication and going to the doctor's office, but the hours each day that you aren't feeling well and need to just sit.

I don't have nearly the number of pills to take each day that you have to deal with, Ronni, but the ones I do take would be forgotten sometimes if I didn't have a timer. I keep a timer beside my computer (where I spend most of each day.) and when I take one batch of pills I set time timer to remind me to take the next ones.

My pill boxes are in different colors; one for morning, a different color for noon, etc.

Another tip is to check the medication to see if I am getting low on a prescription when I fill my pill containers.and then calling for a refill at that time.

By the way, for those of you who don't know, the kitchen and bathroom are the worst places to store medicine. I keep mine in a rack over the inside door of my linen closet.

Some of my friends who need to gain weight drink something or other that their doctor recommends. I'd be drinking milkshakes, personally.

I'm glad I live in a "retirement community" which fixes food for you -- as much as your situation needs. Plus drivers to take folks to doctor appts if they can't drive themselves. I know so far you prefer not to live in a place like this. And maybe now is not the best time to think of it. But we have lots of fun here and enjoy each other and the concerts and other activities available to us. Just to keep your options open...

Ronni, I understand and just have severe arthritis and now knees going. Knee replacement do not know if much good at my age. A lot of pain and choosing at the moment no pain medication as 3 weeks ago tried Tramadol and passed out, ER and thankful nothing broken.
I drink Ensure twice daily with ice cream to help keep weight on. Continually moving like they tell and along with rest. I am fortunate that it did not begin downhill until 78
and now just turned 83.

Yep, I agree with Ernestine. 78 seems to be the time when "stuff" starts to happen to many of us. I haven't had a life-threatening event like cancer or heart failure yet, but I'm for sure experiencing some "life-disrupting" conditions (like Ernestine's knees). I'll turn 81 in January.

Spinal degenerative disease, scoliosis, arthritis and osteoporosis--all have been diagnosed at various times in the past 2 years. All I know is that I can no longer do a number of things I used to enjoy; merely standing up straight can be a challenge. I haven't changed my long-held view: I'm no fan of longevity simply for its own sake.

Ronni, you're doing great and I admire your tenacity, talent and brain.

Ensure Plus has extra calories and vitamins

Milk shakes and smoothies and whatever tastes good

And please get someone in at least once a week to clean the house and help however you need it.

You will feel better if some of the household tasks are done and take take good care of you.

I love your posts and always anxious to read when they arrive in my inbox.
You are amazing and also admire your courage and determination. Whatever you say, after the age of 70, has its challenges and I do not like to dwell on the aging part of my life. I did not read the chapter 101 in aging.
Thank you

I agree with Susan R, that exhaustive as your list is, there is always more to do. And then something unexpected happens. I am mad that you and too many others have this struggle. Why is caregiving so undervalued? Thinking of resources spent on expensive medication commercials, pink parades, taking away health insurance, etc.. Getting co-ordinated help with this should be a right. You are brave and generous to tell your story. Sending you best wishes.

Am approaching 7o and not really enjoying it. I have to write down what time I take my pills or I forget whether I took them or not. Can't trust my memory. I tried to use a pill box, but still couldn't remember...

My husband has been diagnosed with stage 3 lung cancer and has undergone radiation and chemo and may try a new genome-changing drug (the side-effects are horrific) and I'm afraid for him. If he dies before me I will try to do away with myself. I really cannot function without him. My mind is going and I will not drive because I'm afraid I will kill someone inadvertently. My husband's mind is still stable and I trust him to take care of me, but if he is gone, I would have to move in with my son or daughter and that would ruin their lives and their kids' lives. We have little money besides our Social Security and Medicare and I can no longer do much house-hold work.

What a drag it is getting old...

@Classof85: I hear you. I'm not there yet, but I can imagine being where you are. Sometimes choosing to bow out on your own terms looks like it will be the only rational choice.

There is one point to think about. You know your son and daughter best. You obviously care about them, and want to spare them a burden they couldn't handle. I expect they care about you, too.

Are there things you can do or tell them, now, before the issue arises, that will spare them from some of the grief and guilt of imagining you in a horrible distress that... maybe they could or should have done something to prevent, to relieve, to spare you? That's a burden I worry about putting on my kids, and I am trying to alleviate that as best I can. In part, I am trying to share some of the insights I have gained here. I've been trying to give them some sense of what it's really like to grow old. They're not ready to hear it, they don't have the experience to understand it yet, but I hope that later, when they need to know and can no longer ask me, they'll remember something of what I said.

Exactly how that might work, for your kids, is going to be very individual. Very specific to the exact relationship. It is a thing to think about, though.

Diagnosed with breast cancer in February of this year...chemo, surgery and now radiation every day. Trips for lab work, occupational therapy so my arm won't freeze up after surgery, port flushes every 4 weeks so it won't clog up even though I HOPE and PRAY I will never need to use it again. Residual bone and joint pain from chemo, neuropathy in my feet from Taxol, scans....etc. It is all consuming and it affects me and all of my close family unfortuantely. I don't know what I would have done without my wonderful family and children during this who have been so supportive and patient....but I remain so tired and emotionally wiped out. I try to stay busy with happy things like time with them, but napping is definitely something I never did before, but it is totally necessary now each day in order for me to keep going. Cancer sucks. I am so glad I am currently cancer free and I hope I never have to visit this again once radiation is done because there is no maintenance bills or infusions available for my type of cancer...bummer.

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