Dear Past Self,
Good job on stashing scrunchies and hair elastics into every nook and cranny of your existence so that you could put up that pesky hair anywhere, anytime.
Could you please retrieve them all now, since they are only reminding me of how I don’t have hair issues anymore? Make sure to check our purses, wallets, glove compartments, jacket pockets, drawers, and pencil cups. Oh and there was one under the bed. And one mixed in with the Legos.
Tags: baldness, changes, chemo, daily life, identity loss
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This seems like a strange thing to write about, but I find people are on uncertain footing when they interact with me. In all fairness, my ability to socialize varies, depending on where I am in my chemo cycle and how many pills I’ve needed to pop that day. I’ve had enough unnecessarily confusing interactions to warrant some guidelines for interacting with the ChemoMe.
1. My short-term memory stinks. My ability to focus shifts. If you are talking to me and it seems like I am not following, you are probably right. If the message you have for me is important, I may do better with the three-sentence version of your news. Or write it down. Or wait.
2. While I can only absorb succinct communications, I can seldom produce them. I am more loquacious than usual and even have a bad filter about what may or may not be wise to share in a given situation or moment. This is sad to me, because discretion was one of my hard-earned adult life skills, and I feel it slipping away. I also often
forget why I started to say something, not knowing what my original point was.
3. My nausea*, which at its best is just lurking just beneath a druggy veil, threatens to come out when interactions become heated or tense or when they require complex decision making. Don’t take it personally
if I walk out of the room when I am simply a witness to these kinds of conversations. Leaving is part of my nausea control.
4. As is suggested by #3, my normal sensitivity is heightened. While I don’t feel nauseous from your pity or guilt, I prefer not to be on the receiving end of either. Pity, in particular, insults my pride. I know that this is an awful situation, but I also know I have unbelievable support and good treatment available. I don’t mind commiserating with you and talking about how much this disease sucks, but hold the pity, please.
And guilt … well, I understand it. You’ve been meaning to call or write but haven’t known what to say. I have been there. Just know I take all awkward messages, like, “I don’t know what to say, but I am sending love.” “Just thinking about you.” Whatever. That’s great. I love getting these.
But I also know that you really are busy. Even in my foggiest moments, I am aware that there is a certain life clock that has stopped for me, certain timetables I have departed from. I exist in cancer time. I get to go lie down when I’m tired. I have people picking up the pieces for me in all sorts of ways as I stumble along through this treatment. You still need to keep it together and manage your busy life.
Conversationally, a lot of guilt comes out in people downplaying their troubles. I have no problem that my cancer puts your flat tire in perspective in the scheme of things, but if I am your friend, you can still bitch to me about how long it took the AAA guy to get there while you waited in the rain.
5. I seek amnesty from the normal etiquette of returning phone calls, texts, and emails. Please don’t take my lack of response as loaded with any kind of meaning. There is a pretty good chance that I actually think I answered you. (Confession: I have this mental email problem in a much milder way even when I am well.) I love getting your notes. I can’t say it enough. Please don’t think I am flaky if I don’t respond.
6. I can’t hug you or shake hands or be around you when you cough. I try to avoid crowded rooms or, if I must be in one, to sit where I think I might be in not-as-close proximity to somebody’s hacking. My immunity is compromised. This is a threat I take seriously, since I’m a grumpy sick person when I just have a cold. I really don’t want to have cancer and a cold. Also, if I ever go in for a chemo infusion and have a fever, they will delay my treatment. One of the ways I’ve always tried to exert control over the chaos of life is by scheduling things and making timelines. So, damn it, my last chemo better be on February 25. My friends are all lined up. I don’t want it to go into March. It may not make sense to you, but that’s really important to me.
7. My strong orientation to the calendar has historically put me in the role of the family scheduler. I have had to hand over those reins to my husband, because I am not constant enough to catch all the events in my family’s life. This is especially hard for the girls’ social lives, because for some reason, playdate scheduling tends to be a mom-to-mom interaction. I have already screwed up a couple of times by double scheduling us because I get some great idea for something and don’t realize that another plan is in place. Even if I was told. (See #1.)
8. I get physically tired. It must be confusing because I look like me (minus the hair) and, aside from the chemo, I am otherwise strong. I also don’t tend to kvetch. But I wear out, sometimes sooner than my mind thinks I should. If I can’t keep up or need your help, don’t be surprised
* “Nausea” is actually the wrong word. But it’s the closest thing I have experienced to this particular brand of malaise. Nausea, in my experience, usually starts with a sour taste in the mouth and a lurching belly. Whatever this is starts with a metallic taste in the mouth and a prickling sensation in the mouth, throat, and gut.
Tags: advocacy, chemo, coping, daily life, healthy people, nausea, what not to say, what to say
Posted in Humor, Treatment | 2 Comments »
I know I have not experimented much with pharmaceuticals in my day, so chemo is an absolute onslaught to my system. I bet there are things that wouldn’t make a junkie flinch that mess me up good.
They give me a big dose of Benadryl at the start of each infusion. Did you know Benadryl can make you hallucinate? Well, it makes me hallucinate. I find the hallucinations less scary if I have some nice music playing as I meander in and out of various states of consciousness. So here, my friends, is my most recent Infusion Playlist.
Kind of a moody but sometimes joyful set of tunes… Maybe you have to take a lot of Benadryl to understand.
- Rain by Patty Griffin
- Coulibaly (A Better Day) by Amadou & Mariam
- I Feel the Same by Bonnie Raitt
- Happy Woman Blues by Lucinda Williams
- Under Your Breath by Whiskeytown
- Shelter from the Storm by Bob Dylan
- Turn off the Light by Nelly Furtado
- Jolene by Ray LaMontagne
- A Long December by Counting Crows
- Fidelity by Regina Spektor
- Does This Bus Stop at 82nd Street? by Bruce Springsteen
- Three Little Birds by Bob Marley
- Beautiful Day by U2
- Here I Go Again by Danny Salazar
- So Quero Um Xodo by Gilberto Gil
- Saint Behind the Glass by Los Lobos
- Sepulveda by Meghan Hayes
- O Valencia! by the Decemberists
- May This Be Love by Emmylou Harris
- Over the Rainbow by Eva Cassidy
Tags: chemo, coping, support
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Okay, so maybe you won’t be long boarding on the open sea just yet. My doctor warned me yesterday about the danger of head injury right now since my platelet count is low (meaning my blood would not clot quickly). I am also already aware that I will be facing the fat at the end of this treatment, as so many of these drugs work against a fit figure. Sigh.
Even if we make peace with the inevitable extra pounds, there are other good reasons to engage in moderate exercise on the days you are up for it. There are numerous studies that support the benefits of something as moderate as daily 20 minutes walks. Resistance training has also proven beneficial, particularly for boosting immunity. For me, exercise is a reminder that my battle is not against my body but rather alongside my body against the cancer. My body and I need to work as a team to kill those damned mutant cells.
Since I feel fatigued and generally blah, I nonetheless need to coax myself to just do it. Let’s face it, I’m just doing a lot of unpleasant things right now, simply because they are “good for me.”
Here are the exercise bribes that work best for me:
- having a friend come along,
- using a half hour walk to chat on the cell with a long distance buddy,
- reading a trashy magazine on an aerobics machine,
- listening to a playlist of joyful music to remind myself of what happiness feels like and to keep focused on feeling that way when I can,
- channeling my anger at my cancer through an aggressive workout. I actually think the words, “Take that, Stupid Cancer!” in my mind. ”Hi-ya!” might work too.
- find a class that makes you feel good or with people you like. Gilda’s Club has a number of options that are free of charge to people undergoing treatment.
- if you have a favorite walk (lakeside, mountain path, park trail), make the extra effort to go there and spend time.
What are some of the challenges you have with exercising during chemo? What have you found that works?
Tags: attitude, chemo, daily life, exercise, mental health, side-effects
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I have struggled with nausea from the start of the chemotherapy. I am not somebody who tends to get nauseous. Three pregnancies and nary a hurl. But I do have a sensitive body, and these chemo drugs make other pharmaceuticals look like baby Tylenol.
My oncological nurse’s solution has been primarily to throw more antiemetics at my problem. Trouble was, all the bottles basically said the same thing: “Take 1 pill every four/six/eight hours as needed.” I had a bad experience thinking I didn’t need them anymore and finding out the hard way just how much nausea had been masked by the drugs. I was up to 6 prescriptions. I don’t care who you are, that’s a lot of drugs to be using to shoot down nausea.
Oh, and did I mention the antiemetic drugs all have side effects, the cure for which can make you nauseous? Woot.
Today I drew a GREAT nurse in the chemo infusion room who really sat down with me and helped me devise a strategy for using the different drugs. For example, one of my drugs potentiates the efficacy of another, so taking them in tandem is smart, while a third drug kind of repeats the effects of a first, but not as well and with more side effects. We came up with a nausea management plan that she helped me make sense of so I can tweak and adjust as I need to, but hopefully not feel so sick.
My oncologist had already improved things for my infusion by having me take steroids earlier an hour before my treatment. Taking them intravenously was absolutely hellacious on me.
My SuperNurse improved things even more by slowing my infusion rate and increased the saline I received from 500 ml to 1 L, diluting my chemo drugs so that they could be better absorbed by my body.
My beloved nurse has been in her profession for 30 years and says she loves her work everyday. She told me she tries to size up her patients and help adapt treatments to do what is best for them, based on her many years of working and talking to patients about their treatments and regimens. She had crooked teeth and a thick Arkansas accent. She is one of the best cancer teachers I have had to date.
I made sure to ask to become one of her “regulars.” That kind of treatment is worth gold.
Message to other ChemoBabes: You do have choices and alternatives, so keep speaking up if you are uncomfortable or sick. Find people who can help you adapt your treatment in ways that make sense to make you feel better.
Tags: chemo, education, nausea, nurses, self-advocacy, side-effects
Posted in Treatment, Wellness | No Comments »