Riding the Wave

Dear Angie,

My loved one just told me she has cancer and I have no idea how to react to this horrible information. It makes me feel awkward, scared, jittery – all those adjectives you’d use to describe a full-blown panic attack.

This person is very important to me but, honestly Angie, there’s a part of me that wants to run for the hills and totally ignore the situation. However, I realize that would be a real douche-bag move on my part so I’m asking you for advice.

How can I avoid being a total idiot while my loved one is dealing with this? What do I say? What do I do?

Yours truly,

Clueless about Cancer

 Dear Clueless,

You’ve come to the right place! First of all, just the fact that you’re trying to figure out the proper response shows a high level of non-douchey-ness on your part. So, bravo! You’re on the right road already.

As I’ve just been through this rollercoaster myself – and have experienced responses to my situation ranging from I’m-going-to-ignore-you-because-I-can’t-deal to Florence-Nightingale-levels-of-loving care – I’m happy to provide a quick primer on how to handle the situation. Here we go:

If you really, really don’t know what to do when confronted with this situation, I would suggest you begin the way a good friend of mine did. She owned up early on by saying “Angie, I have no clue what I should say or do. Should I ask about the cancer? Should I check in with you a lot to see how you’re doing? Should I try to normalize your life by NOT asking about the cancer? WHAT SHOULD I DO?”

Do you know why this was awesome of her? It’s because she laid herself bare and showed me how emotionally vulnerable she was by saying “Hey, I love you and want to help but I just don’t know how.” In the immortal words of Jerry Maguire, she was saying “help me help you!” And I did. I told her she didn’t have to check in with me constantly, that she could ask about the cancer and that if she REALLY wanted to help, she could offer practical help.  

And that’s good advice for you too. If your loved one has cancer and has to endure chemo (endure being the spot-on correct verb here) she will be EXHAUSTED. Her family will be EXHAUSTED. Think of cancer treatment is as a physical and emotional marathon – one without the awesome carb-loading or sore knees. (Oh wait, that’s actually not true. Chemo made my knees sore.) She will need some help in simply maintaining the daily habits of life. So, feed her. Feed her family. Do a load of laundry. Wash her floors. Offer anything you can to help her in a practical way because she’s so sick and tired that she can’t possibly do it all anymore. Of course, you’re emotional support is also very important, but when it’s backed up with practical help in the form of a casserole, you’ve entered the big leagues of helpful friends.

Also, remember that your loved one’s exhaustion translates to a need to stay home, like, ALL THE TIME.  So if you want to see her, don’t expect that she’ll come to you. She’s going to feel like she needs to come see you because, let’s face it – the marathon is LONG and BORING – and cabin fever will make her climb the walls. And she’ll probably feel guilty that she’s not holding up her side of the friendship. Let her be a crappy friend and stay at home. If you want bonding time, go to her, because I can almost guarantee her favorite place in the world is her bedroom. Especially when she goes bald.

Gosh, does she HATE going out when she’s bald.

Now, that being said, Clueless, if you’re loved one with cancer also happens to be the loved one who shares your bed, don’t forget that under the baldness, bad days and nausea, there’s still a girl there. She’s not just a patient. She’s a woman who also needs to feel like NOT a patient. Yes, you’re awesome. You’re taking care of her and the house and the kids and all of it but don’t forget that she also wants you to treat her like the woman you couldn’t wait to see naked a few years back. Bring her some flowers. Buy her some chocolates. Surprise her with her very own potbelly pig. I don’t know… whatever it is that makes her feel like her mojo isn’t gone for good. She’ll need to know that you see beyond the cancer to the woman she once was. (and will be again!)

Clueless, I hope these tips will help you navigate your relationship with your loved one. Just remember – with a little candor, vulnerability and, maybe, a pan of really good brownies, you can never go wrong.

Sincerely,

Angie

The One-breasted Amazonian Agony Aunt

There have been many times over the past few months when I’ve started a new blog post, only to abandon it in favor of other distractions. I thought I was done riding this wave but I’m so definitely not. With each passing month, I realize that even though my cancer treatment is done, my cancer journey is not.

And while the most horrific bits are over -- the terrifying tests, the challenging chemo, the ravaging radiation – reconstruction and all these post-cancer emotions are a hell of a lot tougher than I had ever imagined they would be. I felt like it was time to share. (or over-share, as I’m wont to do…)

So this time I’m bound and determined to finish this blog post and not let myself get distracted by all those shiny things competing for my attention. I’m looking at you, Pinterest. And if you’re reading this right now, I guess I’ve attained my goal. (Yay me, pat on the back.)

I don’t have the energy today to dive into a discussion of post-cancer emotions so let’s start with the easy stuff, which is actually not so easy – breast reconstruction.

Back at the end of December when I had the mastectomy, the good doctors inserted what’s called a tissue expander. Imagine an empty breast implant with a small port in it and that’s a tissue expander. They put that sucker in where your breast was and begin filling it on a weekly basis with saline solution. This allows them to slowly stretch your skin and muscle so that you have enough space to later insert a permanent breast implant. I thought this would be a no-brainer sort of process but it wasn’t. Every week between March and the beginning of May, I’d show up at my plastic surgeon’s office and he’d stick a needle in my “breast” and inject anywhere from 35-60ccs of salty water into my tissue expander. It wasn’t painful per se until the end when everything got very tight and un-stretchy. (radiated tissue doesn’t stretch as easily…)

What did particularly SUCK about this process (aside from the obviously complicated emotions I had about losing a breast) was that every week my body was trying to find a new balance. The doctor would add a smidge of extra weight to the front of my chest and so every week by body was like “Whoa! What’s this? I’d just gotten used to that weight from last week and now you’re adding MORE?” My back muscles protested by tying themselves into knots. My shoulder did bad things to me. My chest muscles creaked and groaned.

My massage therapist got rich.

After the expander is filled to capacity – in my case to 500cc – you then have to wait for at least three months before they’ll do your exchange surgery, which means you get a permanent squishy breast implant instead of the saline-filled rock currently residing on my chest.

My exchange surgery is tentatively planned for September 13. I say tentatively only because I haven’t made up my mind completely about whether my current plastic surgeon will do it or whether my “second opinion” surgeon should. But that’s another story. In any case, surgery will happen in September and I’m VERY excited to move one step closer to completing this chapter of my life. This new reconstructed right breast will never look like the old one did. It won’t be as rounded or full and it’ll probably never have any feeling in it. And it’ll be smaller. (DAMNIT) And oh yeah, that also means I’ll have to have ANOTHER surgery sometime later in the Fall to adjust my left breast to match righty. Sigh. However, in clothes nobody will be able to tell and I’m already looking forward to getting that badass boob tat I told you about when all is said and done. (Though I’m not allowed to get that until one year after radiation, so February 2018.)

The big “if” of everything coming up is this: will I heal?

Radiated tissue is forever damaged and it doesn’t heal as well as healthy tissues. Roughly 40-50% of implant-only breast reconstructions fail when the patient has had radiation. That’s a HUGE failure rate and I’ll be honest, I’m nervous. If the surgery fails, this whole process will start over. They’ll remove the tissue expander, let my body heal and rest, put a new tissue expander in and start the expansion process all over again. And then they’ll have to decide what part of my body to cannibalize to make a new breast. Many women have fat and tissue taken from their waists to create a breast but since my doc says I’m too skinny for that (YAY!) they’d use muscle and skin from my back to form a new breast in conjunction with a small implant. The introduction of “fresh” healthy tissues creates a new blood supply and helps the radiated tissue heal after surgery.

I can’t tell you how much I don’t want this to happen. I REALLY DON’T WANT THIS TO HAPPEN.

So here’s what I’m going to do to up my chances for healing. I’m going to sit in a hyperbaric oxygen chamber for six weeks -- four before surgery, two after – everyday, two hours a day. This was my second opinion plastic surgeon’s suggestion and original surgeon is in agreement. (And insurance is too which means they’ll pay. Thank you, Dutch medical insurance!) Treatment starts next week which means my life is about to get incredibly intense for the foreseeable future.

What’s hyperbaric oxygen therapy, you ask? And why does it help? Essentially, it’ll be like I’m going underwater to 15 meters and sucking on pure oxygen through a face mask. The increased pressure (that’s the hyperbaric) allows the O2 to enter my bloodstream in greater concentrations and that promotes healing throughout my body. The Mayo Clinic explains it better than me: http://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/basics/definition/prc-20019167

Of course, I DID ask the doctor if I would experience any fun side effects from the treatment like increased energy, younger skin and cellulite-free thighs. The answer was no. (DAMNIT) Although, his nurse did mention that a very small percentage of patients do get an energy high from it. (please let that be me, please let that be me, please let that be me)

It’s been more than a month since I’ve written on this blog. Sometimes I’ll think of the many, many topics I’ve contemplated writing about here and haven’t gotten to yet – the wonderful world of wigs, how to react when someone you love has cancer, and so on – and then I realize I have no desire anymore to delve into these topics.

Cancer has exhausted me. I don’t want to think about it anymore. I don’t want to write about it anymore. You know what? Cancer can totally kiss my ass, that’s what it can do. I’m kicking it to the curb like a bad boyfriend.

Now that my treatments are behind me, I feel a very strong urge to move on. Think about new things. Seek out new challenges. Travel and see new places. Write about new things. 

I want to live like a cancer-free survivor and, for me, that means not letting thoughts of it bump around my head and spill out onto the page. Well, I DO still think about it. Of course, I do. But I try to strangle those pesky thoughts in the cradle. Kill ‘em before they have a chance to grow into something big and scary.

This week, I started working my normal schedule again. I have eyebrows, lashes, a healthy skin tone and a hairstyle that – though super-duper short – looks like I might have chosen for it. I’m still missing a breast but reconstruction will resume on March 23rd and, with some luck, I’ll have a new, lovely matched set of ta-tas by the end of the summer. In the meantime, I’ve got an insert I throw into my bra and no one is the wiser.

Nobody can see the cancer on me anymore. And if I’m lucky, all those treatments took care of the cancer cells people can’t see – the ones that might still be floating around my body.

So, I’m going to bid you adieu. For now. I’ll pop back onto this blog to post about reconstruction because I think that information will be helpful for other women riding this wave.

On my last day of chemo, I brought energy balls (aka Mommy’s healthy cookies) as a little thank you gift for my nurses. My super healthy, surfer nurse Ramon particularly liked them so this is for him: 

1 cup of oatmeal

Approx. 1/3 cup of peanut butter 

Approx. 15 dates, chopped 

About 1/4 cup of coconut (not the sweetened kind!) 

tablespoon of flax seeds, tablespoon of chia seeds -- this isn’t necessary but it’s good for the bowels. ;) 

2/3 tablespoons of honey -- this is the glue that keeps it all together. You might need more. 

Mix it all together thoroughly (I use a food processor) and refrigerate for one hour. Remove from the fridge and roll the mixture into balls. Add more honey if it won’t stick together. (or some extra PB works too)

The recipe is adaptable so feel free to throw other things in or delete something. For instance, you could get rid of the coconut and/or toss in some cocoa powder. 

See what I did there? That’s called IRONY, boys and girls. Or maybe it’s called satire. Or maybe it’s both. I don’t know. Would some wordy types like to weigh in here? 

Oh wait. I AM a wordy type. 

Damn. 

The white-man hero I’d like to introduce you to is named Dan Ryan. (pictured on the left up there.) Many moons ago, Dan and I went to college together at George Mason University. He, Warren (aka Renno) and I met during my freshmen year and immediately formed a sort of happy threesome. (No, not that kind of threesome.) I spent inordinate (and some might say “inappropriate”) amounts of time in their dorm that spring and their friendship was a safe haven from the extreme cattiness of the females in my own dorm. (Don’t get me wrong… I LOVE women… but these girls were being passive-aggressively mean to me.) 

Can I use an adverbial form of passive aggressive? Wordy types, feel free to weigh in. 

Dan was my buddy. (I hope he still is, despite the years and distance between us.) I cracked jokes with him. Drank FAR too much alcohol with him. Sprawled on the dorm lounge’s couch with him, spouting the half-philosophical inanities of early adulthood, and passed out (at least) one time his room after drinking the deceptively-dangerous and aptly-named Slip-N-Fall. (I missed a DC pro-choice rally the following day because of that infamous night…) 

Slip-N-Fall

12 lagers (Corona was used during my own tragic Slip-N-Fall evening…) 

6 lemons, sliced

6 limes, sliced 

1 bottle of vodka

1 can frozen lemonade concentrate

1 can frozen limeade concentrate

1 bottle Sprite

Throw it all together, mix and enjoy... carefully. 

Apparently, Dan has been reading this blog fairly regularly and something I wrote moved his kind heart (and his deep wallet) enough to donate to a cause I hold near and dear. In a recent blog post, I mentioned that I wanted to get a “bad-ass tattoo on the reconstructed breast” and that when the time came, I wanted to get connected to my tattoo artist through an organization called P.ink (http://p-ink.org/). Not long after that post, Dan wrote to tell me that he’d donated $1000 to this organization. 

Wow.

Getting a tattoo over your scars isn’t just about getting some “cool ink.” Having someone create a thing of beauty in the exact spot where so much ugliness has taken place is a powerful way for women to recover psychologically from the ravages of breast cancer. And believe me when I say that this disease DOES ravage you. It touches so many aspects of your being – your body confidence, your sexuality, your self-esteem, your femininity – that there are days when you truly don’t recognize who you are anymore. 

Sometime in 2018, I also hope to officially close this devastating chapter of my life my having one of P.ink’s tattoo artists cover my breast with a meaningful piece of art. And even if Dan’s gift doesn’t directly benefit me in my quest to spiritually recover from breast cancer, his donation supports a group that strives to help all of us survivors heal and move forward.

Thank you, Dan. 

The woman walked to the water’s edge, removing her shoes despite the nip in the air. The wet sand was cool beneath her feet as she inched forward towards the familiar sea. She’d spent a lot of time here these past months but, still, this water frightened her - she couldn’t see into its cerulean depths and the sun’s intense glare prevented her from catching sight of what exactly was happening on its surface. Like she’d done so many times though, the woman pushed her fear aside – her need to take the water’s measure was stronger than any lingering uneasiness.  

She tentatively dipped her bare toes into the foamy water and was taken aback by how unusually warm it was. Given the month, she’d expected a jarring shock of cold but this ocean was soft and welcoming, like a tropical bay in August. Gathering her heavy skirt up with her left hand, the woman strode forward into the warmth with a sigh. The ocean swirled around her calves and she briefly closed her eyes to enjoy the sensation.

But there was still the question of what was happening out there, the unknown movement of the water’s surface. Her eyes snapped open and she blinked into the glare, focusing her gaze on the distance. As she looked, the gulls suddenly fell preternaturally quiet in her presence, as if they too were nervous about what she might find. The sun was high and she squinted against the brilliance of its light dancing on the water. The woman lifted her right hand, the side where they’d taken her breast a week before, to shield her eyes. She ignored the tight tug of her wound and focused on the vastness before her. And what she saw gave her a confidence she hadn’t felt in many, many months.  

The sea was stretched to the horizon in a flat glassy sheet of utter calm. No matter where she looked, she couldn’t find a single wave or ripple breaking the indigo stillness. The sight of all that serene water was like a gift, a confirmation that her suffering hadn’t been for nothing and it gave her the courage to broach that all important question, the one that had flitted at the edges of her mind since she first awoke from the anesthesia. She parted her lips and let her whispered query float into the hushed wind, drifting outwards and away from her into the greater universe beyond:

I’ve had this blog entry on my to-do list for ages. At first, I thought I’d write about how you can be helpful/understanding/not-act-like-a-total-moron when a friend reveals she has cancer. I still plan on doing that but not this time around. This time you’re going to get a stream-of-consciousness extravaganza and I’m going to blabber about every little thing that’s been knocking around my head for the past weeks.

Ready?

I haven’t written lately because I just haven’t wanted to think about cancer. On the other hand, I almost think about nothing else. Weird, huh? I guess writing about cancer has been too in-my-face and I’ve been avoiding this computer like the plague because, sometimes, I just can’t deal. But now that I’m actually sitting here and writing, it feels good to get it all out. Also, I’ve missed you – yes, YOU, that person reading these very words right now. Have I told you lately how much I appreciate that you take the time to come visit my blog? Well, I do. So thanks for that. You’re a deep bowl of awesome sauce, you are.

Ahem, where was I? Ah yes, avoidance, procrastination and an inability to deal…

To begin with, chemo has been done for a little more than 3 weeks now. I wake up every morning and very closely inspect my scalp, eyebrows and eyelashes for any sort of regrowth. It’s all coming back, I think, but it’s a slow process. Now that I’m feeling so much better – I’m even working out! – I’m impatient to look like Normal Angela instead of Cancer Angela. I want to blend. Yes, that’s probably the first and last time I’ll ever express that sentiment.

(Of course, now I have Marisa Tomei in my head saying “Oh yeah, you blend” to Joe Pesci in My Cousin Vinny.)

One of the main reasons I’ve wanted to hide from this blog is because my friend, Thera, lost her battle with breast cancer on December 5. I am so utterly heartbroken that her life has been cut short and that her husband and teenage daughter are now without her lively, lovely self. And a death like this hits even closer to home when you’re suffering from the same disease. I know my situation is different – I was diagnosed at stage 2 and she was diagnosed at stage 4. Rationally, I know that I’m curable and that I could live a very long, cancer-free life. I could make it to 85 when, according to one of my friends, I’ll certainly die in the arms of my young, Latin lover.

I know this and, yet, Thera’s death has awakened some complicated emotions that I’ve never felt before. For one, I’ve experienced survivor’s guilt. (…which Wikipedia just informed me has been redefined as “a significant symptom of post-traumatic stress disorder.” Well, hmmmm… that’s something to chew on…) The first week after her death I burst into tears at very random moments – particularly when I was enjoying myself. For instance, I was decorating the Christmas tree with the kids when I thought “Oh this is so nice. I love being back in life. I love spending time with my babies.” No sooner had those thoughts formed in my brain and they were quickly followed by, “Ohhhh… this is so unfair. I’m alive and she isn’t. She will never see another Christmas.” And the tears began to flow.

I don’t want to feel this way and I think most people would say it’s useless to feel guilty. I get it and I totally agree with you. I want to celebrate that I’m alive, that I feel good now, that I have my life and will soon be cancer free. (I hope.) But sometimes this perplexing guilt enters unbidden and I imagine it’ll be a long while before I move past it.

To complicate matters even further, I’m also experiencing whopping amounts of fear and disappointment about my upcoming mastectomy. I will lose all the breast tissue in my right breast, including my nipple. Is that TMI? Sorry about that, but you know me. I overshare.

And have I ever told you how much I like my breasts? I really, REALLY like them. (I should… I spent enough money to get them to look like this.) I want to keep them just the way they are. And yet I can’t because one of them is trying to kill me. Yes, I’ll be super-duper happy to get this cancer OUT OF MY BODY but damn it, I’m so scared to be disfigured. It’ll be another half year (at least) before my reconstruction will be complete (more on that later) and so I’m looking at many more months of dealing with the havoc cancer has wreaked on my body. (Not to mention my psyche)

On the plus side, I’m planning to put a bad-ass tattoo on the reconstructed breast to cover the scars. I never thought I’d be the type of woman to get a boob tattoo but there you have it.

PS. Don’t tell my dad. He’s anti-tattoo and has threatened to disown me if I ever get one.

P.P.S I’m planning on getting a tattoo version of The Great Wave off Kanagawa. It’s the image that I’ve used for this blog, for obvious reasons. Also, my son’s name is Kai which, depending on the Kanji in Japanese, means “ocean.” Also, our family name is Tideman which we pronounce tee-duh-mon in Dutch but, if you’re an English speaker, is pretty obviously connected to waves and the sea. Lilia’s name means “lily” in Russian so maybe I’ll ask the tattoo artist to somehow subtly incorporate a lily in the wave so I can honor both of my babies on the breast I used to feed them.

P.P.P.S. I’m sure I could get this tattoo somewhere in Holland but there’s an amazing organization called P.INK (http://p-ink.org/) and I’d love to get connected with a tattoo artist through them in order to support this organization. Also, I like any excuse to travel.

I have more to tell you but, gosh, I’m tired and it’s time to spend some time on other things. (In other words, I want to revert back into cancer-avoidance mode.)

For many of you, it’s the day before Thanksgiving. You’re stuffing turkeys, preparing guest rooms and checking the liquor supply so that all that family time will be more tolerable festive. Not to sound too preachy but I hope you’re also taking a moment to think about all that you’re thankful for. Are you loved? Are you healthy? Do you have a roof over your head and food on your table? Do you have a dog that licks your face or a cat who ignores (but secretly loves) you?

Yes? Wow, you’re very lucky. And rich.

This impending last round of chemo has put me in a contemplative mood. It’s making me think about all that cancer has taught me about myself, my friends and family and about my life. I still have a lot ahead of me – recovery from the ravages of chemo, (at least) two surgeries, the fear of recurrence, checkups, etc, blah blah blah, ad nauseum. But finishing chemo is a major milestone and I want to share with you what I’ve learned:

1)  Obvious one: I will never ever ever ever take my health for granted again. EVER. Ditto for the health of my loved ones.

2)  My ability to tolerate bullshit has been greatly diminished. Honestly, this one is tough for me. Sometimes I put up with very stupid things because I’m afraid of hurting someone’s feelings. But I vow to do better in the future. My time, attention and energy are for me, my kids, my husband and the people who have supported me during the most hellish time of my life.

3)  I’ve learned how to pencil in my eyebrows LIKE A BOSS and nobody can ever take that talent from me again.

4)  I will never think about exercise as something I “need” to do but rather as something I “get” to do. Seriously, folks, I have full-on dreams about taking runs. Last night, I had a long dream about the new gym I joined. I can’t wait to have the energy and strength to use my body again. And I can’t wait to sweat from something other than hot flashes.

5) I will never look at handicapped people or people with chronic illnesses the same way again. It’s emotionally and physically exhausting not to have your body work the way you want it to. Pain, fatigue, medical visits, needles, nausea, limited (or non-existent) sex life… the list goes on and on. If you can go through all of this and still find the good in your life, then my hat’s off to you.

6) There’s nothing like a life-threatening disease to bring out your inner Buddhist. I have finally learned to be mindful. I have today and only today. I will not worry about tomorrow or dwell on yesterday. Hell, I’ve even started meditating. (Though I currently really suck at it because it’s hard to concentra… oh look a squirrel!)

7)  Nurses are AMAZING people. AH-MAZE-ING. Okay, doctors are great too but a good nurse – someone competent, professional AND kind – can make all the difference in how you feel about your treatment. I adore the nurses who’ve been in charge of my care and feel incredibly lucky to have had such a caring team helping me. That being said, I hope to never see them again. (At least not professionally.)

8)      [steps onto soapbox] Basic healthcare is a right, not a privilege. Nobody should go broke if they get sick. Do you know how much I’ve paid for all of this treatment? NOTHING beyond my monthly insurance payment. No co-pays, no extra costs for drugs, NOTHING.

In short, I’ve changed. I’ll never be the same person I was and, honestly, I’m mourning that a bit right now. But I’m also trying to embrace the new post-chemo (and, I hope, soon post-cancer) woman I’m evolving into. And that woman is learning to be thankful for the many things – big and small – that so many of us take for granted every day. Wonderful, little details that often get tsunami-ed away by the crush of daily life, Facebook status updates or petty little grievances that color our moments. So, please indulge me as I trot out the epitome of all clichés: take the time to stop and smell the roses. Or better yet, I’ll quote Ferris Bueller: Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.

Yesterday was chemoday #9 of 12. I’m getting close to being finished with this very, VERY long journey and I can almost taste the end – well, I could if my taste buds were working properly.

However, I’m unsure how this will all end. The chemo part of it, I mean. I know I still have surgeries and possible radiation in my future. (But I’m not allowed to think about that yet. Too far out, right Tamela?) Every time I have chemo and see my oncologist, I’m asked about any side effects I might be experiencing. I think I mentioned before that a big fear is that this current medicine, Taxol, could leave me with permanent nerve damage. So it’s part of my responsibility as a patient to be very clear about how I’m feeling and if I’ve noticed changes in my hands and feet – pain, numbness, etc.

This past week was the first time that I had numbness in my fingers and toes that didn’t dissipate after a few days. It stayed with me all week – in fact, it’s making typing a bit difficult right now – and I relayed this information to my chemo nurse. I said, “I don’t have any pain but there’s a subtle numbness. And it hasn’t gone away.” I didn’t think much of it. Didn’t think it would be a cause for concern quite yet because it wasn’t pronounced. However, Irma (my lovely nurse) immediately called a doctor and the decision was made to stop chemo right away. Boom. Drip off with only 90% of the hedge juice in me. (Taxol is made from the yew tree – hence my nickname for it.)

And that’s when I burst into tears and sobbed hard for a good minute. Because, well, FEAR. If I don’t get all of the medicine, doesn’t that mean my chances of dying go up? What if that one stray cell that broke off from the tumor doesn’t get killed? What if it lodges in my bones and grows?

See those “what if” questions there? I just had a bit of a biology lesson a few days ago and learned from a psychologist at the hospital that those are particularly dangerous questions for a cancer patient to ask herself. (Actually, they don’t do anyone any good.) Every time I ask I ask myself a “what if” question, I’m stimulating an area of my brain called the amygdala. (pronounced ah-MIG-da-la)

The amygdala is the part of the brain that stimulates the flight or fight response in your body. For instance, imagine you were bitten by a dog on the street. The next time you see a dog, your amygdala is stimulated and tells your brain “Uh oh, there’s a dog. We had a bad experience with one of those. Avoid, avoid, avoid!” It’s a very old part of your brain, often considered to be a part of the reptilian brain, and it responds to threats before your rational brain. It’s helped us survive and thrive as a species and kept us out of the paws of sabretooth tigers and such.

Now imagine that the threat to your life isn’t external but rather internal. You’re fighting a beast you can’t see and it resides within your very own body. Yikes. That’s rather scary huh? You betcha. But your rational brain is trying to figure things out so it can avoid the threat. Why did I get breast cancer? Why me? What if I hadn’t drunk so much alcohol? What if I’d eaten better? What if I’d exercised more? What if, what if, WHAT IF?

The psychologist I met said that every time I ask myself those questions, I’m stimulating my amygdalae (there are two) and I’m flooding my body with stress. She said, NO ONE – not my doctors, not researchers, not a well-meaning mom at school who quizzed me on my dietary habits, absolutely NO ONE – knows why one person gets cancer and another doesn’t. So, it does me absolutely no good to ask those questions, now or in the future. In other words, she said, KNOCK THAT SHIT OFF.  Don’t ask those questions. Just be here now. Live now. And completely remove the “what if” questions from my existence.

Pretty good advice for all of us, don’t you think?

We’re entering TMI Territory here, folks. Proceed with extreme caution.

But that title DID get your attention, didn’t it? I thought it might.

In the spirit of openness that I try to embrace with this blog, I want to put some of the nitty gritty details out there on the interwebs of what chemo actually does to a woman’s body. Why? Because I’ll tell ya, it’s very damn hard to find this information when you search Dr. Google. (an activity I’ve SWORN off of, btw). And while the good nurses and docs at your hospital might inform you that chemo, particularly the one I’m currently on (Taxol), will do lovely things like “dry out your mucus membranes” what the heck does that actually mean in reality? It means that if you use it, ahem, your vagina might split open like an over-ripe tomato and then you’ll spend the next week peeing FIRE.

I warned you, didn’t I? T to the M to the I.

First, a biology primer: your mucus membranes are located in spots such as your mouth, eyes, nose, vagina and anus. So in addition to being thrown hard and fast into menopause (also not so beneficial to the ol’ hoo-haw), Taxol can have an extreme drying effect on these areas of your body. That translates to occasional nose bleeds (I can deal), dry mouth (not one I’ve had too much trouble with) but also the skin of your anus and vagina thin out and become VERY sensitive. Let’s put this way – sex is TOTALLY off the table for now and every time I have a bowel movement, it’s like passing glass.

Luckily, my GP hooked me up with some numbing cream and I use it liberally to dampen the pain. But still, it’s not exactly a party down there.

What else does chemo do?

1)      Taste changes – this one is annoying and, quite frankly, can get depressing. Food is life. Eating is a joy. And for someone like me who loves to cook, it makes me sad that I don’t like what I eventually bring to the table. (Uhhhh… that is, when I actually have the energy to bring something to the table.) Also, your caregivers are constantly concerned that you’ll lose weight and that you’ll weaken as a result. IF ONLY. Except for chemo #2 which left me like a shaky, newborn kitten, I haven’t lost a pound.

2)      Nail changes – some unfortunate souls lose their nails. I have not. (yet)

3)      You know about the hair loss on my head but now Taxol is allowing at least a little re-growth there. But what I’m now losing – and which makes me REALLY look like a cancer patient – are my eyebrows and eyelashes. Sad. I think I miss those more than my head hair. Oh and BTW, the head hair is coming in white. Thanks Ramon for confirming that depressing fact yesterday. ;)

4)      Nerve damage, which can become permanent – I’ve had some tingling in my hands and feet but so far, knock on wood, it’s been minimal.

5)      I think I might be having some vision changes. Sometimes it’s hard to focus on smaller words and my eyesight can be a bit blurry. It’s either the chemo or the fact that I’m almost 44. Or BOTH.

6)      Difficulty sleeping – this one is getting worse for me. Thank you, hot flashes.

7)      Sensitivity to noise – I’ve always been hyper-sensitive to noise (don’t get me started on leaf blowers) but it’s quadrupled since starting chemo. If I’m downstairs and the kids are talking loud and goofing off – you know, just normal kid stuff – I often have to flee to my bedroom or risk screaming at everyone like a crazy woman.

8)      Fatigue. Mind-numbing, bone-crushing, curl-into-fetal-position fatigue. I hate hate hate this one SO MUCH. Getting out and walking a bit helps.

9)      Bone pain – Taxol can make your bones and muscles ache. This has been pretty minor for me. I’m just lucky I guess. (Says the woman who had a 1 in 69 chance of getting BC in the first damn place.) Yes, I know, the normal stat you hear is 1 in 8 but that means over a lifetime. A 70 year-old woman has a higher chance of getting it than sprightly, young 43 year-olds like me.  

10)   Chemo brain – until a few years ago, many doctors didn’t acknowledge that your brain function can go on the fritz when you’re getting chemo. Now they know it can. This side effect is also particularly sucky for me. I forget things, can’t think so clearly and generally stumble through my days with what feels like a greatly-reduced IQ. According to my surgeon, it could take me a YEAR to come back from this one. Oh joy of joys.