Complaints or gratitude?

I have really been pretty depressed ever since the day I found out radiation on my armpit would continue. I “only” have 8 more sessions, but when you are in pain 24 hours a day, that seems a lot longer than you would think.

I have kind of tried to keep it to myself (how depressed I am) because I feel like facing this entire challenge with gratitude and an upbeat attitude has been one of my strengths and worked to my benefit. But the fact is I AM depressed, and just hiding it isn’t resolving the issue.

There are a number of reasons I am depressed, and my first instinct was to blog about them all, because writing is very soothing for me. But no one wants to listen to someone complain incessantly, so I decided to try to turn each complaint I have around into an expression of gratitude. I know it’s not going to fix my depression, but maybe it will improve my mood, even just for today.

So here goes.

I am grateful that I have a capable doctor with whom I can meet this week to discuss my burns and the pain they’re causing, and I’m grateful my insurance will cover it.

I’m grateful that I can afford a pilates instructor to help strengthen my muscles. I’m grateful I have an amazing friend who is also a massage therapist who helps me manage the pain in my joints. I am grateful my insurance covers an acupuncturist (who’s from Philly!)

I am grateful I have not lost ALL of my eyelashes. I am grateful my eyebrows and hair are growing back in.

I am SO grateful I have a partner who supports me, takes care of me, and has taken on extra duties to ensure I get the rest I need to heal.

I am grateful – I am having a hard time with this one. I am embarrassed, depressed, and angry that chemo sent me into early menopause, and that I don’t know when or if I will come out of it. It is embarrassing to be 38 and in menopause and I don’t – I can’t think of any positive side to it. I am grateful – I am grateful to be alive. I am grateful my body responded to chemo the way it was supposed to, and that I am still here.

I am grateful that I have been able to maintain a social life while undergoing treatment.

I am grateful that I have stayed positive up until now.

I am grateful for the amazing network of people I know in real life and online who have listened to, understood, and supported me throughout this ordeal.

And I am grateful I can write. So grateful for that.

How to Deal

I posted a link on my Twitter earlier, but I thought I’d post it here, too.

How to Deal with Me Having Breast Cancer

If it’s TL;DR for you, here’s my favorite highlights.

“Dissect every page of those celebrity tabloid magazines with me in the waiting room at my oncologist’s office, as if Zooey Deschanel’s red carpet look for the Golden Globes is the most important thing in the world. Distract me while my nurse hooks me up to the chemo pole. Make a stripper pole joke as soon as she’s finished.”

Yes this! But not at chemo. Make a date to come to my house. Let’s lie around on my bed or my couch, because moving around too much makes me nauseated. Let’s laugh and snark and let me feel normal for a minute.

“Try as hard as you can to never, ever Google anything about my diagnosis because I already have doctors who went through years of schooling for that, and I’m pretty sure they’ve got me covered. Accept that no matter what you read when you inevitably Google my diagnosis, chocolate is critical to my recovery.”

and this one goes hand in hand with

“Read all the Internet articles about how someone in an ashram is curing their cancer with kale juice, meditation and magnets. Send me a link to a video of a baby elephant swimming in the ocean for the first time instead.”

Please. This is hard. I didn’t make the decision to undergo my treatments lightly. I didn’t neglect to do research. I’m doing what I think gives me the best chance of survival. I’ve found who I think are the best doctors. And as much as I know you want to see me healthy and happy and cured naturally, I just want to be cured, and alive to see my children grow up.

“Understand that even though I’m aware on some cosmic level that what doesn’t kill me might make me stronger, I’d much rather be a non-cancer-having weakling.”

“Bear with me when I get a little weaker and a little more fed up each day of my treatment. Be patient when I don’t snap back to normal as soon as it’s over. Make peace with the fact that as long as I’m above ground, it’s never totally over. Embrace my new goal of just being okay, because whatever normal is I’ll never be it again.”

So far, a little more extreme than how I am feeling, but it’s definitely sinking in that I HAVE CANCER AND I COULD HAVE IT AGAIN. I might end this chemo and in two months or two years they could find it in my lungs or my brain or my liver or my bones and I will always, always have that hanging over my head. I will always know that my cells can turn on me and that they very well may and I won’t walk away from it.

“Make a list of all the probing medical questions you want to ask me, then ask Jeeves.”

I’d also like to add:

If you don’t know what to say, I don’t care. If you don’t know what to do, I don’t care. Just come be with me and pretend I’m normal because I really need some normal right now.

Thank you for saying I am beautiful bald, though realize I don’t believe it, and I hate being bald.

Text me funny anecdotes. I don’t care what they are. And if I don’t text back, please don’t take it personally – I might be sleeping. Or crying.

So there’s your abbreviated how to deal with KATE having breast cancer.

Hairstory

I was born with a full head of hair. It was long when I was little, and then when I was about 8 or maybe 10, my Mom cut it into this awful mullet style – there is evidence in the form of school pictures. I let it grow back in and then when I was about 13, I cut it in a chin-length bob with a strong desire to look like Breathless Mahoney.

madonna

Note this is probably a wig, so really, I had no chance.

My hair definitely had the curl to support this style but I was never able to achieve the same volume and bounce… probably because I was a 13 year old girl with no idea how to style it or what products to use. I eventually grew it out and got layers.

Those are the only two times in 37 years that my hair has been short. Otherwise, it has always been medium, long, or super long.

In a one-week span I went from long to short to buzzed to balding mangy dog (which I am currently maintaining). People tell you that no matter how prepared you are, the hair loss will be traumatizing, but I have to disagree with the use of that word. I have been through “traumatizing” – I had to get treatment for PTSD after Gregory’s complicated and nearly-fatal-to-both-of-us birth. The word I would use is demoralizing. Part of it is my issue – I am both feminine and vain, and mangy dog is not a hairstyle that is natural to either. I have cried. A lot. I am a naturally insecure and awkward person, and although my hair wasn’t winning me any beauty awards, it was my damned hair – and it was unceremoniously taken from me. I read an article recently about how in the middle ages a punishment for women was to cut off their long hair, and that concept recurs to me nearly every day – I am being punished. Why am I being punished? (Of course I know I am not, but it sure feels that way.)

With that said, I’m not hiding it. If my head is cold, I put on a hat. If it’s not, I don’t. I saw the eyes in the airport as we made our way back to Seattle. Some people study me and look sad. Others look at me and then quickly flick their eyes away, embarrassed, afraid to stare. One kind lady in line for food asked me outright, “How are you doing?” and wished me good luck. Scarves right now make my head itch as the hair is still falling out. I’m not sure if I’ll invest in a wig or not – having done burlesque I know firsthand that they’re often itchy, hot, and unnatural looking. And if I do get hot, it’s not as easy to just whip it off in public as it is with a hat.

At home, it’s more the annoyance of it than anything – my head and neck get cold really easily, and the hair gets everywhere, making me eternally itchy. I scrub my head in the shower to try to get as much hair out as possible, but it never seems to stop shedding. More annoying, what little hair remains is actually GROWING, so I guess I’d better invest in a pair of clippers.

On the bright side, I shaved my armpits three days ago and they’re still soft as a baby’s behind, so there’s a silver lining. Also my eyelashes and eyebrows are hanging in, which I pray they continue to.

For now, just need to get used to my new, weird patchy reality, and pray it goes quickly. Next chemo this Wednesday.

Family

So before the daily update, I just need to say: Family, yo. 

My husband has spent as much time as possible at my bedside. My mother, sister Gretchen, and brother-in-law Matthias have carried the weight of caring for my two toddlers while he does so – all while fighting off the cold virus that brought me here. My sister Kristin got me an amazing art set from the Metropolitan Museum of Art (my fave US museum so far) and some cool coloring books, and my sister Gretchen brought them and some books she picked out for me – including an awesome Calendar of Wisdom book she got me for Xmas – here to me at the hospital. My cousin Crystal has been my biggest cheerleader from afar. My Uncle Mike has repeatedly touched base with me to send me good wishes. My sister-in-law Joanna and brother-in-law Mark have stayed in constant touch with me from England with hopeful words, funny stories, and positive thoughts. And our Araceli – our chosen Seattle family – has texted me nearly every day to check on my condition. Family. Blood. Thank you. You’re my rock.

Anyhow so! Not much sleep last night as my IV machine kept freaking out. No idea why. AIR IN LINE! AIR IN LINE! or MEDICATION COMPLETE! MEDICATION COMPLETE! Long night, but my awesome night nurse Deirdre took my blood before 7 and the results are already back. My ANC has to be over 500 for me to come home and unfortunately that result hasn’t come back yet BUT my overall WBC count went from 2000 yesterday to 11000 today! So that Neupogen shot really did the trick (in addition to making my knees and hips ache like a mother). 

My hair is coming out so much I can’t even describe it, yet I still appear to have a full head of hair. This will not surprise those who know me, but at this point it’s driving me nuts. I had a total mini breakdown over it last night. There is hair EVERYWHERE, and it doesn’t help that I haven’t been allowed to shower (because of my port). I actually hang my head over the garbage can and just pull tufts of hair out and still HAIR REMAINS. The worst part is my entire scalp aches from the follicle inflammation so at this point I just want the hair gone. Gretchen says she will buzz it today but Julian doesn’t want that, which lead to my breakdown. I am complicated in that I don’t feel especially physically beautiful but I put a lot of work into trying to be. I have this 1950s glamorous beauty ideal that I am constantly striving for, and short hair does not figure into that. So right now I try to avoid looking at myself in the mirror, which is fine while I’m trapped in the hospital, but when it’s back to regular life is going to be pretty hard. I’ll be torn between not wanting to see how bad I (perceive that I) look and wanting to make extra effort with my makeup and jewelry to make a silk purse out of a sow’s ear, so to speak. Anyhow that’s enough rambling about vanity.

Cancer sucks. It’s stripping me of all sorts of things I need to be me. I haven’t seen my kids in several days. I sleep alone every night (when I can sleep). I’m not allowed to shower and wash what little hair I have left. I have no physically autonomy. But in the end, I’ll be stronger. Maybe I’ll be a different me. If so, I hope it’s a better me.

A Very Merry Chemomas!

Just by way of update!

My stomach is still a total wreck. I emailed with my doc who told me this concerns him and is NOT normal. He said to take 2 Imodium up to 4 times a day and if that doesn’t fix it, he wants me to schedule an appointment. Well, the Imodium stopped the diarrhea, so that is SUPER. Sadly I am still uncomfortable, crampy, and bloated, but still – huge improvement!

In other news – the hair loss has begun! Not too bad yet, just shedding way more than normal. As mentioned previously, I have a crazy amount of hair, so if it thins uniformly, it won’t be terribly noticeable. If it starts falling out in clumps, though, it’s head shaving time. 

Also I don’t have dry mouth (yet) but my tongue and the roof of my mouth feel like sandpaper. Such a weird and unpleasant sensation.

And finally – Merry Christmas! In spite of the stomach situation, I’ve been having a very nice day with my family and thinking a lot about how lucky I am and how wonderful my friends are. Hope you’re all having a beautiful day, whether it’s Christmas to you or not. ❤