Happy Chemo Holidays!

Ha! Who would have ever thought of that for a Hallmark card? Or, American Greetings? I am after all in Cleveland! Having experienced Chemo Holidays, I can assure you that the holidays can be very warm and festive on chemotherapy.

Being a Jew by Choice, I was raised Catholic and my daughter gets to do the double holiday thing, but rarely simultaneously. With Hanukkah’s first night falling on Christmas Eve this year, and 2nd Night on Christmas itself, we had a very rich celebration indeed. My daughter was particularly enthralled by the visual blend of both worlds.

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Here is a link to a little video of Lighting The Candles for 2nd Night,

But the Holidays are all about Family, and I had all my sisters with me! Thanks Sister Sledge. In front of the Blue Hanukkah Bush. Right?

And my Dad, and his wife Wendy, and some new comers with family (always welcome!)

Matt & Tiff (family)              Bookends Mike w/ family Julie and center Cortney w/ family Ben

And the Frenchies!      img_5591    Half family.

Our Cooks for Christmas Dinner, Leesa with helper Jack family, & Games Galore!

I baked up a storm! Hanukkah Cookies, Christmas Cookies and Apple Dumplings!

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I was so fortunate as to have the Holiday weekend coincide with an end of cycle where I had energy and felt good and was truly able to enjoy the food, and join in festivities. I so enjoyed just being IN THE MOMENT. We joked about my occasional change of hair, and about the hair I SHOULD go out and get (blue, pink, red), and my lack of nasal hair, and about how much faster I could get dressed because of my options. We were all so happy to be able to be together. I’m a very lucky Chemo-Girl!

We all sang Christmas Carols, and for the first time, Rebecca played accompaniment to my Brother-In-Law Tom who leads with his guitar when we do sing a longs. They were really very good; few of the singers met their abilities!

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Every greeting, every smile, every laugh, every quite moment of beauty was priceless. Happy Chemo Holidays to all my family and friends!

A Hitchhikers Guide to Chemo

I’m just a passenger here myself. Nevertheless, ever since I’d typed the words, “Don’t Panic” in my first blog, regarding dense tissue Goddesses and the lack of need to worry that dense tissue may indicate some higher propensity for contracting breast cancer (it doesn’t! ), I’ve been drawn to the parallels in what may be helpful advise between The Hitchhikers Guide to The Galaxy and my wish for a similar guide to my cure.
Having felt thoroughly dull and listless this past weekend, I availed myself of the resulting couch-potato-state I found myself in to peruse my official Seidman Cancer Center MY CHEMO GUIDE handbook. I don’t know, I thought it would help. If you are looking for some enlightening, up-lifting material, I’d recommend pretty much anything else . . . anything at all.
While I have been able to share some “fun chemo facts” to a certain extent, more of these chestnuts are revealed to me daily, and I thought it would be really valuable to line them up and organize them with appropriate “# Chemo-Girl Tips” on how to address them as the need arises, ala The Hitchhikers Guide directions.
So, here we go.
Regarding Pain Related to Your Treatment (or your congressman, or your co-workers) 
#Don’t Buy The Tylenol. 
I was told to take Tylenol for any pain I might experience. This advise was in my Chemo-Class just before I started my treatment. Yes, they really made me go to a Chemo-Class. I personally don’t care for Tylenol, it never helped with headaches, and it never helped with flu symptoms. Turns out, that’s because it isn’t an anti-inflammatory, and, fun general fact, most pain is due to some sort of inflammation. Tylenol does have the added feature of being really hard on your liver though, so, if your chemo-chemicals aren’t up to the task, you could finish taking your liver out by self medicating with Tylenol.
Not wanting to be unprepared for intolerable pain, I bought a bottle of Tylenol as was suggested, but because I don’t like Tylenol, I was choosing to “soldier through” both headaches and joint pain. When I mentioned this to my Physicians Assistant last week, she said, “Oh, take an Ibuprofen if you need something. Tylenol isn’t really an anti-inflamatory and the Ibuprofen will work much better anyway.” Let’s all observe a moment of silence to ponder who’s getting paid to recommend Tylenol to chemo patients. . . .
Okay, so, stock up on Ibuprofen then, because as Douglas Adams so succinctly put it in his Hitchhikers Guide, “You don’t want to go to heaven with a headache,” and as I’d like to point out, you don’t want to go anywhere on chemo with a headache.
Regarding Your Vision On Chemo
#Buy Eyedrops — and splurge on the good ones. 
From the very first infusion I’ve experienced what I was calling “eye-strain.” I was having difficulty reading road signs, and iPhones, and books, and things of that nature. My eyes didn’t hurt, I was just “straining” to see printed material.
Here was my “Well, duh,” moment number one. The chemo is dehydrating my body, which I KNEW, and which was why I have been drinking 52 ounces of water a day, but here was a place I could insert moisturizer into directly and it never occurred to me to do so. I never claimed Chemo-Girl was a genius.
Regarding Nasal Passages
#Invest in Kleenex — Seriously, if you have an extra $50, buy some stock in it. I guarantee a return for you. 
This was my “Well, duh” moment number 2, and my favorite. You know that hair that chemo patients can loose? We loose our nose hair too! Isn’t that a riot?!!! Nothing’s holding those drips back. Nothing.
This is a great example of how “You should always, always, always stay abreast of plans posted at your local planning department in Alpha Centauri.” sic D. Adams. I’m pretty sure this is the only posting on those nose hairs, so you’ll want to keep this guide handy if you ever end up here.
Regarding Chemo-Mouth
#Coconut Oil Soothes The Savaged Tissue
Aren’t I just chockful unpleasant function fixers? Well, the tender tissues that are normally ultra-hydrated are pretty hard hit by arid-facist-chemo-chemicals. What can I say? For some it is worse than for others. Actually, one of the most frustrating parts of My Chemo Guide is that it vaguely lets you know a great deal about the possibly-awful-that could-become-unbearble side-effects, and if you read the guide too carefully you could really want to do some research on cryogenic sleep after all. But, for the white patches and peeling tissue that is likely to occur periodically, swish your mouth with some coconut oil and keep lip balm handy.
More bon-mots from Mr. Adams, “Every once in a while it’s absolutely terrific if someone is trying to kill you . . . it means you’re on to something.”
I say, facing something like cancer has the “you can’t buy this knowledge” that you really want to live, and you know what your life is worth to you.
And finally, from the Hitchhikers Guide To The Galaxy, I’d like to leave you with this thought, “If you discover why the universe is here, it could be replaced by something even more bizarre and inexplicable. In fact, it might have already happened.” I’m hoping the cancer’s already been replaced too.

Getting A Clue, Or, How Skating Moms Rock!

Alrighty-then, I’ve been schooled. Not that you’d think so from the immediately preceding language and grammar, but I’m talking about a whole different kind of school. Our brains are absolutely amazing constructs, but they have their limitations. For example, they can’t tell our bodies what the schedule is supposed to be for the processing of alien substances. True story.

Our livers and kidneys may generally function at a predictable rate, but, take your graphs off the table along with your expectations. There are things like “out liers” and odd storage capacities that remain unexplained to this chemo-girl that no amount of factoring can account for. This week my Anticarcinogenic Chemicals told me “Your puny earth weapons are useless against me.” I hope that includes the cancer that is the intended target. You need a lot of acceptance with this cocktail.

So, do you remember the “Pleasant Surprise That Came With Week Two?” Gee I miss that week. Coffee tasted almost like coffee, I was more or less working out again, I felt like myself again, yeah, delete that. The fourth week that was the nominal equivilant of week two was not quite a repeat. The down-swing was later than the first treatment, and the general sense of miasma was tenaciously clinging to me well past Monday.

Allow me to acknowledge that I am hardly dragging myself weakly from bed to breakfast to my daily chores and work. People have been telling me all week that I look great, and honestly I am doing just fine. Ah, but the whisper at the door, the under the skin murmmers, the changes that only we can sense in our cores, tell me what curriculum is to come.

This week I felt as Wile E. Coyote must have in that moment when, intent on his pursuit, he had run several yards past the edge of the cliff and only now realized the extent of the ensuing consequences. There’s no getting out of this predicament baby.

You would think I’d have had that figured out by now, wouldn’t you? The diagnosis was what, three months ago now? Breast surgery was oh, two months ago? I’ve had The Plan for chemo and radiation about a month and a half now? So this is where I sit up and say, “Hey, wait a minute, is this negotiable?” It’s just like when you’re on the roller-coaster and the car has just gotten to the pinnacle, and your want to tell someone you didn’t mean to get on this ride. No. Please stop now! I saw only the descent before me.

Enter a whole new support system. Wow. Like the Charge of The Light Briggade.

You remember the thirteen year old who looked so charming (if uncomfortable) in the wig salon? She’s an ice-skater. The whole deal. Skate club, competitions, cute outfits, the works. The skate club. The moms. The bless their hearts, the I love this life, skate club.

Thursday the 8th, thoroughly discouraged by my circumstances, my continued miasma (and by my neighbor, but that’s a different story), I opened my e-mail to discover a message, with some of the following excerpts:

‘As the “Sunshine Chair” (can’t we come up with a better name?? ) from the Shaker Figure Skating Club, I am reaching out on behalf of our club members.  We would like to offer a hand in supporting you in any way that you feel comfortable with.  We can rally in many different ways.  As you know, there’s nothing a skate mom can’t do!  . . . Some of the ladies have asked about bringing your family meals.  Is anyone arranging meals for you?  . . We are happy to create a group of moms in the neighborhood who are available to help drive carpool to and from the rink for [your daughter]. . . .We can simply take donations and deliver gift cards for area restaurants or deliver some food to help get everyone fed in a stress free manner.’

O. M. G. — I smiled and cried for ten minutes, shaking my head and literally thanking G-d for the life I have and for these women I barely know beyond their daughter’s names and their favorite performances. I mean, I know a little more, but really . . . not much.

Well, NOW I know even more. How big their hearts are for one thing. This is community action.

As I have been advised, so will I advise in turn. A couple of these very women in the club, and several other friends and family members and health practitioners, have all said to me, “Don’t be afraid to ask for help, and DON’T be afraid to accept it when it is offered.”

I really need to emphasize something here. I was reluctant to talk about my cancer. I was reluctant to let people know that I was ill and flawed. I was as appalled by news that my illness was going to become visible, as I was by the actual news of having this disease. Really. It was a huge step to write my family, and it was as big a step to publish these blogs.

But if I hadn’t done this, I wouldn’t have the help I can now count on, at the bottom of the descent when there is still no stopping and I won’t want to cook, and my husband will be exhausted, and my daughter will still need to eat. I won’t have to lie in bed at night, not even once, feeling like I’ve failed the people I’ve committed my existence to for better or worse, for richer for poorer, in sickness and in health. Because I admitted I was sick, and I began to tell the story of what it was like, help was offered. By the way, I said yes and thank you.

Can I just say one thing? Skating Moms ROCK.

 

Second Cycle Down, Among Other Things

You’ve got to love new experiences because they lead to new insights. For example, I have a whole new perception of things like “letting your hair down,” and what can define a”toxic relationship,” and the opposite of that, and “fighting like a girl,” Let’s see if we can get them all in.

On letting your hair down –
When taking off a head scarf becomes an adventure in “take it off, take it ALL off.” When wispy, stray hairs drip through your fingers and shower to the floor. I let my hair down and some of it goes all the way to the ground. And you know it’s coming, but it is nonetheless alarming, and you are instructed to let things progress naturally because your scalp is going to be sensitive so hold off forced removal, but hey, if you’re ready, you’re ready. I’m just saying.
My fine cranium. Swear to Pete, it’s pretty darn cute. I went to my hair dresser today. I told her she’d be the first to witness my cranial reveal. That cracked her up. It was so very much better spiritually and emotionally to take charge of the situation. Honestly, the handful after handful of hair for two days running was quite enough of that. Here is a beautiful quote from an old friend who just caught up with me on Thanksgiving Day, and who wrote this in an e-mail, “Something I’ve learned . . . It’s how miraculously fragile we all are and how tenuous our connection is to this reality. It’s important to celebrate the small moments and share our collective energies and positivism, to reach out, love and be loved. Joy is the palliative for all hurts, and is far too easily overlooked and forgotten, given in to bitterness and anger.”
So my hair dresser buzzed away the depressing, expiring locks, and when she finished I lifted my head and shook it, and her eyes got moist and she said, “You are absolutely stunning . . . beautiful. You could pull that off without anything to cover it.” And I said, “If it wasn’t so cold, it’s winter! ” And we laughed, and I was filled with joy. Opposite of Toxic.
My friend of the e-mail had followed up with, “Hair is a passing fad, take pictures.” You know you’ll want them later. And finally, he quoted someone else, “Norman Cousins was correct in his analysis: cancer, in all it’s many detestable manifestations in our species, despises laughter.”
So if cancer despises laughter, I’m so gonna make it hate me.
On toxic relationships –
Did you know that intimate relations are to be avoided for 72 hours after infusions? You could burn your partner. New definition of toxic relations, no? But it is only a few days, I drink lots of water after infusions to be safe. So I asked my husband if he’d still be intimate with me when I’m bald, and his response? “YOU are still intimate with me, and I”M bald.” He’s a beautiful man. Another opposite of toxic.
 I fight like a girl. I fight with wigs, and scarves, and creams and hair dressers, and tears, and laughter, and pride, and girlfriends. How do you fight?