Tag Archives: bitz and pieces

Let’s Get Wiggy With it!


and the Winner is

Today was wig day. For so many reasons, it was a day I was secretly dreading. I wasn’t about to let my fears stop me, but they have been churning for a few days. I feel good, I am not having any terrible side affects; the worst being 1 night — and the hair loss of course!

It is interesting to me, however, that I am not finding this as absolutely horrific as I did the first time I went through it. The first time was so emotionally brutal that I can not even express it in words. My eyes usually close tightly, just at the thought of re-living it. But why does it seem different this time around? This, too, I have been thinking about this for a few days. I believe the answer to be more complex than just a simple “because I have been through it before.” This is not to negate the fact that this is a significant part of the reason. I believe the other pieces come from the “circumstances” surrounding my first experience as opposed to my situation now.

In 1982 I was 20 years old, I was a Senior at a very “jappy” university (please excuse the stereotyping of my male and female clan members); but physical and social appearances were of the utmost importance there. Cancer, Hodgkins Desease, was certainly not as common amongst my peers then, as Breast Cancer seems to be today. Really, is there anyone that doesn’t know someone who has or had Breast Cancer? So at BU, I became an automatic outcast. Fear made many worry that they could “catch” what I had. Luckily, I had a friend Nanette Stueck (I have been trying to locate her, but can’t remember her married name) who didn’t care about my ailment at all. She welcomed me in to her apartment, and life with nary a second glance or concern. Over Christmas break when 90% of Massachusetts heads on vacation, I had to remain in Boston for treatments. My family in NY, Nannette invited me to stay with her. It was there I lost my hair! I awoke one morning freezing. I couldn’t figure out why I kept feeling a draft. As I lifted my head from the pillow, I realized all the hair from the back of my head remained on the pillow. Over powered by tears, I sat and wept. I remember Nannette being a real comfort, but frankly mostly I just remember the hair loss. So being alone, away from family, and being an outcast only added to the traumatic nature of this side affect.

Now, my circumstances are different. My hair is coming out at a slower rate than the first time. Still in clumps, but not my whole head. Once again, the back of my head is the first area to disappear; with the top/front just thinning so far. The pace at which it is falling out, makes it easier to adjust to the change. It was very jarring when it came out at once, so the “molting” affect is a little easier to take.

The biggest difference between this experience and the last one, is having family and friends around. If you have a good support system, I believe you can conquer anything (or atleast 99% of things). My family and my friends have been with me every step of the way this time. They have embraced me, they have been a part of my healing and treatment, and they have given me unconditional acceptance during bad days (and good ones), hair days and none.

Today, at my most vulnerable, 2 of the incredible women in my “central support team” joined me for this Wiggy adventure. Julie and Meredith helped me to keep the experience light (again a weight reference, OY!). At Bitz and Pieces, a wig store in Manhattan, we meet Edwin. He was soft and gentle during the initial few minutes of assessment. He was trying to suss out just “what kind of patrons we would be”! Had he only known, he may have had someone else work with us. I wanted to try on all the big wigs for fun. Politely, he got down to business. But quickly he felt our light heartedness, and he loosened up. We joked about never having to wash or blow dry my hair, and how much time that would save me; how I can’t cook with the wig on, or grill with it on, or be near a dryer — on account of the fact that I picked a synthetic wig and it would melt! So I can just give upon those chores altogether.

The whole appointment took an hour. During which time I was able to smile, laugh and, dare I say, enjoy what could be (and was before) a tearful and awful experience. Julie and Meredith encourged me to try on some “fantasy styles”, as well as variations of how my hair has always been styled. For fun, I tried on Red hair a little longer and “Cynthia Nixonish”, and a black haired “Mia Farrow”, a Strawberry and blond Highlighted “Joan Jett” number, and a Black “Uma Thurman/Pulp Fiction” piece. It was fun. While none of these made the final selection, I actually enjoyed the process.

Kill Bill Look


The Flippy Dippy Blond

I enjoyed my selection enough to leave the store wearing it! Off we went to meet Elaine for lunch, she is another superhero in my unbeatable group of incredible women friends. She agreed that I made a great selection. Yeah!

My children came home from school with friends. I had honestly forgotten that I was still wearing the wig. My daughter Alissa immediately noticed. “Oh my god Mom is that your new wig? Yes,” I said cautiously worried about her reaction. “It is awesome, you better cut your hair like that when it comes back.” And without a second thought she and her friend went off to do their homework!

This ‘Hairrowing” experience turned out to be “exhilHAIRating” instead. That is a true relief.

Talk to you soon

Carol
@funnycancermom

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Is It What we say or I how we Say it?


Friday Night I had my first bad night!. About 5 or 6 p.m it hit me. the drugs in my system really decided to show their strength. I had been cruising along all day relatively fine. And BAM! Out for the count. Even though it was 80 degrees outside, I sat shivering under 2 down blankets. I wore a fleece jacket, fleece pj’s, socks, and I still could not stop the shaking. It is the kind of trembling that is both painful and scary. Scott (my husband) did all the right things – mostly. He kept the kids away and settled, he made me tea, gave me aspirin, and mulled over the idea of calling the Dr. — An idea I was totally opposed to. I didn’t have a fever ( I know because I kept checking), and I knew deep down that this is just a Chemical reaction – nothing more. It was almost as if I could feel the chemicals kicking the butt’s of the cancer cells. And, In the moment, it seemed like a championship match! But boy was “I sick as a dog!” That is exactly how I described to my friends the next day. Which got me thinking. Why do we use animals and/or inanimate objects to express our feelings, thoughts and moods?

Why are dogs sick? I never see that — they are always happy and frolicking. Or they are playing with a stick or chasing their tales. What is sick about that. Almost daily, I go for walks with my friends, and a few have dogs. I adore them all, but one in particular holds a special place in my heart. She runs to me when she sees me, she seems to know that I am not 100% and likes to stand by my side often. Almost like a natural support system. What is better than that! It gives me a sense of what being a grandparent is like – all of the joy, none of the poop!

But this got me thinking about other expressions as well. I know some of my blogs seem weight obsessed — what can I say, I am. But, I don’t want to be Stick Thin, or Thin as a Rail! Because neither of those thinks have a shape, or anything! I don’t want to be healthy as a horse, neat as a pin. Though being rich like Midas wouldn’t heart! If I am going to be compared to an animal or an inanimate object — at least let the comparison make sense.

When it comes to my shape, I would like to be Shaped like a fiddle, or Girly like a Guitar (but not like a cello or bass). To stay with musical theme, why would I want to be be Fit as a fiddle? How does a fiddle fit and what is that about. Another favorite is when you are in great shape, you are fit and rock solid — “you are built like a Brick Sh**house…But does sh** really create the image of a rock solid structure. I know when I feel like “sh**” I definitely don’t feel to solid. If someone has put the effort into getting their body to look totally defined he/she deserves the appropriate platitude you know comparing his/her body to something impervious: Chiseled glass, let’s say, are well defined cake with sculpted chocolate Fondant!!!

Some other sayings bother me as well. The other night when I was ailing, and I refused to call the Dr, my husband intimated that I was Bull-headed! Is that like being pig-headed or” Stubborn as a mule”? And again I thought, was he trying to call me a “Dumb Ass”? Frankly, even in his frustration with me at the moment, I don’t think that is what he meant; but what horse’s pa-toot came up with the idea of using one of the most graceful, strong, and independent animals as a symbol of stupidity and inflexibility?

So the next time I feel particular set in my ways, instead of comparing me to an ass maybe someone could say “Wow your unpersuadable”; or If I am in a “skinny way” it would be nice if someone would say “wow, she is as skinny as a Sports Illustrated Swimsuit Model” instead of be comparing me to a thin ,cold metal object (And to clarify this could never happen to me..my body type would not prompt this kind of comparison – especially after the 1/4 of Stew Leonard’s Sheet Cake my friends and I devoured the other day); and mostly, the next time I feel awful, instead of comparing me to a dog, you may want to compare me to another human feeling poorly like as a really bad college kid with a bad, bad hangover – cause at least then the underlying theme is that I look young enough to be in college — Only a win-win!!!

In the end, Cancer and all, I say, “I am who I am, cause who I am is as…………”

Just go out and enjoy today — cause it is as sun as —A sunny Day!!!

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Can I fit it all in to my schedule?


I must be crazy. But I have spent my day trying to work my plans around my chemo. Well really I have been trying to work my chemo around my plans. I have been toying with the idea of going every two weeks, so that I would finish earlier. But that will mess how I will feel at “visiting day” at camp. Then I am surprising my daughter with tickets to see Glee at the Nassau Colleseum; and the two week schedule will mess that up as well. But the every 3 weeks would mess up the end of camp, when the kids get home. Scott was thinking about taking a week off so we could do stuff with the kids. But if I am not feeling well — what is the point. I mean, who knew Cancer could just screw up my schedule so much!

Just the scheduling alone is giving me a headache. Certain days I know I shouldn’t be driving, and certain days I can drive but have to go to sleep early, certain days I feel totally fine, and certain days I just shouldn’t get out of bed. Yesterday was my 2nd Treatment. Again, the actual treatment wasn’t so bad. I felt al little “schva” all day, as my friends say. Today I have been okay…actually starving! The steroids are still in my body so they keep me up, and hungry. I do believe I could join that Coney Island Hot Dog eating on contest if I were constantly on steroids. But as the day wears on I am beginning to lose steam. The energy of the morning has begun fade. Not terrible, and tonight I have to sit and watch my son’s Baseball game, which is a pretty sedentary event. (Honestly, to me watching baseball is like watching grass grow). But if my son misses a play, or strikes out, or has lots of errors when he pitches — I kringe for him. My motherly instinct kicks in. I just want him to do well. So I find when he is up at bat I become a religious women. Under my breath I am begging “please don’t miss, lease don’t strike out.” You think I would have done that when I learned I may have Cancer. We mom’s have some warped sense of priorities don’t we. Not that I would change it at all. I would rather focus on my children than on me – anytime. That is why scheduling this illness has to be done right :).

My children have been funny with my illness. Unfortunately they have know a lot of people with cancer. Some who did not survive. It has made them very mature about dealing with it. As my hair has begun to fall out, they ask if they can come with me “to get the buzz cut!” Since I am with Matt every time he gets one — he felt it only fair. Their humor has also helped them. A few weeks ago, when I didn’t feel well, I was sitting out on our back deck. Matt and Alissa came to the screen door to check in on me; I told them because I didn’t feel great that Dad would be in charge of helping them with homework, and religious school homework, and tennis practice for that evening. Matt and Alissa looked at each other, smashed their hands and faces against the screen door and mouthed “HELP ME!” It brought laughter to us all; and it made me feel that it is okay to tell them when I have good moments and bad ones. They, too, were able to find the funny in the moment.

They both have their subconscious signals that tell me they are scared or upset to see me feeling ill. Matt tends to need to be near me…really he needs to be connected to me. He will just spontaneously come up and wrap his arms around me and literally put his check to mine for a few seconds. It is so unbelievably tender and sweet. I cherish it! Alissa is a warm and huggy child also, but her signals are different. She starts by asking me questions. “How are you feeling mommy?”, “Can I get you anything mommy?” “Are you okay mommy?” and then she always ends with a hug and an “I love you mommy”. She is very maternal. But the greatest part about all of this, once their moment of fear is over. It is right back to “Mommy can you do this for me, Mommy can you do that for me?, Mom, Alissa is annoying me, tell her to get out of my room.” And again, all is right with the world. And I am back to figuring out the plans for the next few days.

In terms of scheduling around my chemo, I have decided to do the therapy every 3 weeks. That way I always have about a week or a week and a half of feeling okay. So what that chemo will go past my 50th Birthday. I will get more cheek to cheek’s with my son and more “mommy I love you'”s from my daughter. (something that I hear happens less as girls get closer to the teen years).
I hope it will give me more to talk to all of you about! Root for the cubs tonight (my son’s team that is)

Have a great day!

Carol
@funnycancermom

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Memories


I have so many vivid memories. Sometimes is is a simple whiff of something that triggers the rerun in my head. I am sometimes sitting and watching 2 people interact, and a memory comes flooding back…This often happens when I see obvious 1st or blind dates…My PAINFUL memories hit me as hard as some of those dates were to take…

Sometimes a flavor can bring back a meal or an event that centered around food (which is almost my whole life). For example, the other day we had chinese food for dinner. At the end, while reading the fortune cookies, a memory flashed in my head from when I was 16. I had just “enjoyed my first kiss” from a boy named Cliff Levy. I had been over the moon about it all day, and had mistakenly told my mother about it (who of course secretly told my father about it). When the fortune cookies came we read them out loud, as we always did. My brothers had some place to be so they were annoyingly in a hurry. We all read our fortunes except my Dad, he was like “Wait, this doesn’t make any sense. This must be for you Carol.” “Why what does it say?” I ask….”You will soon fall over a CLIFF!” he says with a huge smile ..”.MOM!.”, I yelled and ran out of the restaurant. It makes me smile know, but boy was I pissed then.

Sometimes when I watch my twins fight, I remember my brothers and I going at it. For similar “idiotic” reasons. But still, as they fight I find that I drift off to re live one of our beauties, that usually ended in me storming out of a room and my brothers calling me annoying or calling me a baby. How great were they! Memories are fun sometimes…They bring a smile to my face, most of the time. But there are the few that make me wince…Those are the ones I had hoped I would never have to visit again. Not in in my head and certainly not in real life…

Somehow this weekend I was not feeling great. I got a little cold that made me feel just generally YUCKY!!! And, even though it is spring, yesterday felt like a February. Alll day I was freeing. I was dressed for the weather. Sweatshirt, sweatpants, heavy socks, etc. At 1 point I looked down at the sweatshirt I was wearing (it was black) to notice a lot of blonde hair all over it. I went into the bathroom to take a look in the mirror, and thankfully all looked fine. With a sigh of relief, I brushed my fingers through my hair. There it was, a clump of my hair. It had begun, and the memories flooded back. These are memories I wanted to keep looked up forever. These memories are attached to some pretty strong emotions, ones that are attached to some pretty thick tears. Truthfully, having cancer at 20 is a blur…but the memory loosing my hair s the exact opposite; it is so precise and exact. Unfortunately I can re tell every moment of that day, as it happened. I think that is true for most chemo patients.

I know, Hair grows back, styles are ever changing, yet loosing it is probably the worst part of this whole thing. Truthfully the protocol I am on is only supposed to thin your hair, but I seem to be extreme on many side affects, so it appears that I may do more than just thin. I can’t explain what it is exactly about loosing my hair that makes it so brutal, but that is how I felt. My friend Meredith may have captured it. With my hair I can still walk around, and no one has to know that I am sick. But without hair it is like wearing a big Scarlet C!!! C for cancer, get it…see how I tied that all together there. Tricky eh!

Anyway, I have been thinking about it all day: I could react the same as before, or I can try and find another way to deal with loosing my hair. So I went online and typed in Bald Women of distinction….Okay, wrong approach. Have you seen Sinead O’Connor lately..OY!.not so hot. But then their is Demi Moore in GI Jane — but I don’t have her body, so that didn’t work. Cause that just makes me feel fat; oh and then there is Natalie Portman, but she was portraying a sick girl, so that really defeats the purpose. So why are there no “Cancer Survivor” role models. He wait Mark Burnett, there is your new reality series. “Survivor: Chemo Therapy” Who needs to travel to exotic islands to try and survive the elements.

And by the way, why is that when I loose the hair on my head, I never loose that annoying 1 hair on my chin. The one that is now as strong as steel wool? Riddle me that Batman! But back to the decision at hand, I have a nice shaped head, so I may be okay. But just in case, I have an appointment at Bitz and Pieces next week. I plan on trying on every possible hairstyle I ever wanted to have. From a Beehive to a mullet, From Lucille Ball to Rapunzel and every color of hair in the rainbow. Why not, let’s have some fun with it….This time I hope to do it my way! And not to be weight obsessed, but how much do you think hair weighs?

Remember what the rabbit said: Hair today, Gone tomorrow!!!

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