The Cancer Country Club?
Chemo Round #2 - Went ghetto - bypassed the valet parking service and walked the short distance from the parking garage into the warm sunshine. Passed by a couple of shiny limos lined up at the entrance and walked into the bright atrium to live piano music and a brunch spread with pastry, sandwiches, bagels, fruit, juice, delicious enough to serve in a top day spa. People gathered around the bistro tables singing along, smiling, toe-tapping. Volunteers announcing everyone is welcome to partake. Happy conversations between well-heeled personal assistants, patients, and family. Perhaps Julie the Cruise Director was on the Lido Deck? Where is the pool bar? While I stood in the atrium and soaked up the positivity, I forgot for several moments the real reason I was there. Even my appointment slip refers to me not as a patient but a 'guest'. Refreshing...in a strange sort of way. Completely blows my perception of what a hospital setting should be.
Has my Squatter figured out it picked the wrong chick?
Made it up to the second floor, quietly announced my 30 minute lateness (to which the reply was, "you showed up on the right day, so you're not late") and was escorted into the back for bloodwork and vitals. After another short wait, where another volunteer offered me candies while pushing a cart displayed with handmade hats, scarves and wraps, sat down with my oncologist to discuss side effects, essentially, bone pain pretty well controlled with Tylenol, very mild manageable nausea, only needed 2 Zofran, and discomfort from the surgery, but generally, not bad. By Day 4 of the first cycle, my energy had completely returned as did my appetite and even did a few light workouts on the elliptical trainer. Confided in the oncologist that honestly, the worst thing about the experience was the hair loss, but it's gone now, and in a way, nearly everything is better because I have regained some control. I appreciated his concern for my head as much as the rest of me. He took a rough measurement of the squatter and determined that it in fact had SHRUNK by slightly more than 1 cm. THE POISON IS WORKING. He reminded me that he first measured me about 2 weeks prior to my first chemo so the actual shrinkage may have been more. IT IS SMALLER NOW. I nearly ran out of the examination room only wearing the flimsy paper vest....elation! A tiny, huge, perhaps statistically insignificant but incredible piece of good news for me. Bring on the toxins! I am raring to go! The best news I could have enjoyed with my husband on our ninth wedding anniversary. A day we will remember. Sean and I spent the afternoon together waiting for the end of my infusion discussing our plans for our tenth, and as nice as the Cancer Country Club has been for us, Tuscany seems a little nicer. A plate of little necks and crab cocktail for dinner and a walk through Denville for gelato. The nicest day ever with my best friend!
This chemo stuff is a bunch of hype - June 18
What side effects? Day 3 I crashed for about 2 hours, true to form as last time, today is Day 4, no more bone pain, no nausea, just sort of tired. Actually, really hungry but going light and just grazing all day...although I'm dreaming of bad foods and Dinosaur BBQ. Dozed for about 30 minutes. Not really wanting to do much, but not debilitatingly exhausted either. At peace. Amazing little people around me. My amazing large son packing up for Rider University for a week tomorrow. He has been an amazing help lately. Counting my blessings;)
Saturday, June 18, 2011
Monday, June 13, 2011
no more head games
June 10: I knew this was going to happen. Everybody said so. Despite my oncologist's promises, I dreamed I could defy the odds. No, I'm not trying one of those dry ice Penguin cap treatments. I have all I can do to remember to take my meds. What happened to sleeping a straight 8 hours? I keep waking up in the middle of night to see if there's any left on my head. I was prepared for this. Tingly prickly sensations running through my scalp. What's left has the texture of peat moss. Why must this be so hard...please let this be the worst it gets...I will be so incredibly grateful if this is all there is. I promise! It's just stupid hair. I'll feel much better once it's all gone. The worst of it will be over. My secret won't be one much longer. Is it twisted to wish that I could sacrifice my sick breast right away in order to save my hair? After all, you can stick a sock in your bra - like all 4th grade girls do - and your secret is still safe. I saw a bald woman in the store yesterday. I immediately thought, "poor thing, she's sick and fragile with cancer"... How dare I think about her in this way! I am not cancer, hair or no hair. I would not want or need anyone's pity. She is not me, but sometimes maybe she is. She is probably not cancer and probably not interested in pity either. What's the big problem, right?
It will be cooler in the summer
Always got so many compliments on my hair
All the bathroom cabinet space once filled with overpriced promises of shine and bounce I will have for other things now
Just starting to love the short cut
All the time I will save not having to deep condition, comb, curl or flatten
Wore it in a messy ponytail half the time anyway
Always loved to color it - everything from platinum blonde to deep chestnut
Can blow my salon budget on jewelry and hats
No more obsessing
Can't wear too much makeup now
A rebirth of sorts
Can't hate my hair anymore
Hair loss is temporary
Fingernails, toenails, eyebrows and eyelashes too?
Have never seen or felt my own bald scalp before
Was born with more hair than I'll soon have
Going to look like the guy from the movie Powder
A badge of honor
My son looked away when I pulled a handful out and hasn't looked back since
Getting a tattoo on my head would probably really hurt
There is a lot of hair I am not missing (yeah, you DO know what hair I'm talking about)
What am I sweeping up - mine or the dog's?
Sent a frantic text to Sean to find me the biggest, stickiest extra-hold can of Aqua Net he can find in a futile attempt to prolong the inevitable. He came home without checking his messages. Then offered to drive back out in the rain for some. I wouldn't let him. Probably better that way.
Time to stop figuratively pulling my hair out about literally pulling my hair out
June 11: After my husband gently informs me that there is now a bald spot in the back of my head, threw on my new batik inspired do-rag and checked out an Ethiopian restaurant in Montclair. Pulled out some sterling dangle hoop earrings that I haven't worn in 10 years. Gianna announces, "You have a pirate hat! Arrrrgh!" Somehow my neo-hippie-Bohemian look works in the cool calm setting. In between deciding whether I like the injera and exchanging online posts tinged with potty humor a 12 year old would appreciate, another seemingly cancer free, full-haired evening.
Got a beautiful facebook note from my hairdresser Denise. And was reminded again that this situation impacts not just me, but everyone around me:
...
To My Friend
by Denise Caruth on Saturday, June 11, 2011 at 10:45pm
My wonderful friend Teresa is going through Chemotherapy and is losing her hair. Tomorrow I will be doing something I have never done before in my entire career as a hairdresser, I will be shaving her head.
Over the years I have helped many people go through the process of growing their hair back in from loss. I have shaped styles to work with the new and unfamiliar locks, and created a multitude of colors, but never the sacred erasure of them.
Tomorrow I will cry with my friend, I will be bold and courageous with her, I will be there in any way. I am truly inspired by her strength and her spirit.
She is a woman who deserves applause for her valor; she has and will do any and all things for her family to make sure she wins this battle. She is blessed to have an amazing husband Sean and 3 wonderful children Ed; her incredibly smart and talented 16 year old son; and her beautiful twin girls Gianna & Ella which she so greatly refers to as her “Assistant Warriors.” They are quickly becoming our Twinkies best friends.
So tonight I write this for my friend and for myself because I have so much emotion inside. I leave it on the floor with the hair and raise a glass to honor my friend Teresa and pledge to her my friendship and support in her fight for all days.
...
June 12: An 11:00am screwdriver, okay two of them, and within a couple of minutes, with the help of vintage Soundgarden, Chris Cornell supplying the labor-like impassioned background vocals, I became reborn. Three children but my first homebirth, Denise as my caring doula.
After vodka induced tears of joy and hope, and thanks for the happiness my friend and I allowed one another to experience, I wrapped my stubbly round pink bundle of joy back into my blue brimmed cap, enjoyed the four rambunctious children under three playing outside in the hazy sunshine, and concluded that there is still so much to understand about myself. But most importantly, what will my new hair color be? The canvas of my life just got more interesting and colorful and thought provoking. Still can't take it all in, with no hope of a full interpretation before the museum closes. And that's really okay.
Drove out to Hot Dog Johnny's in Buttzville for our once per year excursion. The Harleys impressively lined up and shined. The buttermilk is still gross, but the dogs and fries great as I always remembered.
Ed started talking (and looking) at me again, became starstruck to have met Governor Chris Christie, got a picture, handshake and an autograph from him. The three of us sitting down at the dining room table for a happy conversation for the first time in several weeks.
No doubt in my mind, an over emotional weekend, but thankful, absolutely believe the worst is behind me. What a relief!
It will be cooler in the summer
Always got so many compliments on my hair
All the bathroom cabinet space once filled with overpriced promises of shine and bounce I will have for other things now
Just starting to love the short cut
All the time I will save not having to deep condition, comb, curl or flatten
Wore it in a messy ponytail half the time anyway
Always loved to color it - everything from platinum blonde to deep chestnut
Can blow my salon budget on jewelry and hats
No more obsessing
Can't wear too much makeup now
A rebirth of sorts
Can't hate my hair anymore
Hair loss is temporary
Fingernails, toenails, eyebrows and eyelashes too?
Have never seen or felt my own bald scalp before
Was born with more hair than I'll soon have
Going to look like the guy from the movie Powder
A badge of honor
My son looked away when I pulled a handful out and hasn't looked back since
Getting a tattoo on my head would probably really hurt
There is a lot of hair I am not missing (yeah, you DO know what hair I'm talking about)
What am I sweeping up - mine or the dog's?
Sent a frantic text to Sean to find me the biggest, stickiest extra-hold can of Aqua Net he can find in a futile attempt to prolong the inevitable. He came home without checking his messages. Then offered to drive back out in the rain for some. I wouldn't let him. Probably better that way.
Time to stop figuratively pulling my hair out about literally pulling my hair out
June 11: After my husband gently informs me that there is now a bald spot in the back of my head, threw on my new batik inspired do-rag and checked out an Ethiopian restaurant in Montclair. Pulled out some sterling dangle hoop earrings that I haven't worn in 10 years. Gianna announces, "You have a pirate hat! Arrrrgh!" Somehow my neo-hippie-Bohemian look works in the cool calm setting. In between deciding whether I like the injera and exchanging online posts tinged with potty humor a 12 year old would appreciate, another seemingly cancer free, full-haired evening.
Got a beautiful facebook note from my hairdresser Denise. And was reminded again that this situation impacts not just me, but everyone around me:
...
To My Friend
by Denise Caruth on Saturday, June 11, 2011 at 10:45pm
My wonderful friend Teresa is going through Chemotherapy and is losing her hair. Tomorrow I will be doing something I have never done before in my entire career as a hairdresser, I will be shaving her head.
Over the years I have helped many people go through the process of growing their hair back in from loss. I have shaped styles to work with the new and unfamiliar locks, and created a multitude of colors, but never the sacred erasure of them.
Tomorrow I will cry with my friend, I will be bold and courageous with her, I will be there in any way. I am truly inspired by her strength and her spirit.
She is a woman who deserves applause for her valor; she has and will do any and all things for her family to make sure she wins this battle. She is blessed to have an amazing husband Sean and 3 wonderful children Ed; her incredibly smart and talented 16 year old son; and her beautiful twin girls Gianna & Ella which she so greatly refers to as her “Assistant Warriors.” They are quickly becoming our Twinkies best friends.
So tonight I write this for my friend and for myself because I have so much emotion inside. I leave it on the floor with the hair and raise a glass to honor my friend Teresa and pledge to her my friendship and support in her fight for all days.
...
June 12: An 11:00am screwdriver, okay two of them, and within a couple of minutes, with the help of vintage Soundgarden, Chris Cornell supplying the labor-like impassioned background vocals, I became reborn. Three children but my first homebirth, Denise as my caring doula.
After vodka induced tears of joy and hope, and thanks for the happiness my friend and I allowed one another to experience, I wrapped my stubbly round pink bundle of joy back into my blue brimmed cap, enjoyed the four rambunctious children under three playing outside in the hazy sunshine, and concluded that there is still so much to understand about myself. But most importantly, what will my new hair color be? The canvas of my life just got more interesting and colorful and thought provoking. Still can't take it all in, with no hope of a full interpretation before the museum closes. And that's really okay.
Drove out to Hot Dog Johnny's in Buttzville for our once per year excursion. The Harleys impressively lined up and shined. The buttermilk is still gross, but the dogs and fries great as I always remembered.
Ed started talking (and looking) at me again, became starstruck to have met Governor Chris Christie, got a picture, handshake and an autograph from him. The three of us sitting down at the dining room table for a happy conversation for the first time in several weeks.
No doubt in my mind, an over emotional weekend, but thankful, absolutely believe the worst is behind me. What a relief!
Sunday, June 5, 2011
Dirty little chemo secrets no one told me
No where in all the books I've read, people I've talked or anything I've heard ever prepared me for any of this:
Vivid dreams. Like the one where I'm at Festival in Rio running through the streets with no pants. And my legs look great so I don't want pants. It was probably really hot there anyway. So is this my subconscious warning me of my impending quasi menopause from the chemo?
Or the one where I'm taking an old-fashioned steam engine train trying to get home, only to be dropped off somewhere on Route 287 northbound near the Parsippany exit in the middle of evening rush hour. Are my kids watching too much Thomas and Friends?
Or dreaming that it was 1992 again and being at the Lollapalloza concert in Saratoga Springs, only I had nothing to smoke or drink this time and I actually remembered being there. Do I secretly hope that I could undo the excesses of my youth?
Insomnia. Maybe laying awake trying to self analyze isn't helping. Most of my nighttime wakefulness is spent thinking about why I should have to medicate to sleep. So there's all these chemo drugs. Three of them. One may cause an allergic reaction, so there is a fourth drug given to prevent that. Two of the other drugs cause fatigue and nausea. So add two anti-nausea meds and a steroid on top of that to counteract those side effects. But remember, anti nausea meds cause other things. So there's more meds to counteract the side effects of the drug that causes side effects from the chemo. Oh, and chemo kills good cells too so here's another injection to boost white cell counts, but that causes flu like symptoms so take an antihistamine and anti inflammatory.....blah blah blah. To say nothing of the recommended vitamin supplements. So while all the side effects of the drugs to help the side effects of the chemo seem to be in good balance, the side effect to all of it is that I can't sleep, of course, without a sleep aid presumably. A daunting task for someone who before this episode hadn't been given a prescription for anything in about 15 years. And there's still 5 more treatments and so much more to go.
I guess the other dirty little secret is, treating cancer sometimes feels like you must surrender control of essentially everything. It is not easy for me to become necessarily dependent on medications, other people and services to get through the day, and ultimately save and prolong my life. Sometimes it is a relief to not have any decisions to make. Sometimes it hurts. I was back on the elliptical this weekend, not too many interval sprints but feeling more like my pre-cancer self for the first time in several weeks. Perhaps there really is something to the dizzying laundry list of pills and potions?
Tomorrow my assistant warrior-girls turn three. They tooled around in their new tricycles and played their little electric guitars wearing sequined princess tiaras and chocolate mousse cake on their chins. It was one of those moments you realize is sweet and fleeting. I will seek out more and more of these little moments that make time slow. I will find more reasons to make all of this worth my efforts, good, bad indifferent and ugly.
Oh, the last dirty little chemo secret no one told me - Diet Coke now tastes like Diet Pepsi. Horribly tragic on so many levels!
Vivid dreams. Like the one where I'm at Festival in Rio running through the streets with no pants. And my legs look great so I don't want pants. It was probably really hot there anyway. So is this my subconscious warning me of my impending quasi menopause from the chemo?
Or the one where I'm taking an old-fashioned steam engine train trying to get home, only to be dropped off somewhere on Route 287 northbound near the Parsippany exit in the middle of evening rush hour. Are my kids watching too much Thomas and Friends?
Or dreaming that it was 1992 again and being at the Lollapalloza concert in Saratoga Springs, only I had nothing to smoke or drink this time and I actually remembered being there. Do I secretly hope that I could undo the excesses of my youth?
Insomnia. Maybe laying awake trying to self analyze isn't helping. Most of my nighttime wakefulness is spent thinking about why I should have to medicate to sleep. So there's all these chemo drugs. Three of them. One may cause an allergic reaction, so there is a fourth drug given to prevent that. Two of the other drugs cause fatigue and nausea. So add two anti-nausea meds and a steroid on top of that to counteract those side effects. But remember, anti nausea meds cause other things. So there's more meds to counteract the side effects of the drug that causes side effects from the chemo. Oh, and chemo kills good cells too so here's another injection to boost white cell counts, but that causes flu like symptoms so take an antihistamine and anti inflammatory.....blah blah blah. To say nothing of the recommended vitamin supplements. So while all the side effects of the drugs to help the side effects of the chemo seem to be in good balance, the side effect to all of it is that I can't sleep, of course, without a sleep aid presumably. A daunting task for someone who before this episode hadn't been given a prescription for anything in about 15 years. And there's still 5 more treatments and so much more to go.
I guess the other dirty little secret is, treating cancer sometimes feels like you must surrender control of essentially everything. It is not easy for me to become necessarily dependent on medications, other people and services to get through the day, and ultimately save and prolong my life. Sometimes it is a relief to not have any decisions to make. Sometimes it hurts. I was back on the elliptical this weekend, not too many interval sprints but feeling more like my pre-cancer self for the first time in several weeks. Perhaps there really is something to the dizzying laundry list of pills and potions?
Tomorrow my assistant warrior-girls turn three. They tooled around in their new tricycles and played their little electric guitars wearing sequined princess tiaras and chocolate mousse cake on their chins. It was one of those moments you realize is sweet and fleeting. I will seek out more and more of these little moments that make time slow. I will find more reasons to make all of this worth my efforts, good, bad indifferent and ugly.
Oh, the last dirty little chemo secret no one told me - Diet Coke now tastes like Diet Pepsi. Horribly tragic on so many levels!
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