Hi, stranger.

It’s been awhile.

I don’t remember where I left off, and now that I have finally started writing, I am loath to stop and go look. So I’ll just give a quick and dirty overview of where I am, health-wise.

So I had cancer, I had chemo, I had radiation. Chemo plunked me directly into menopause, as it is wont to do. I struggled hard with menopausal symptoms for two full years. A short list of such symptoms would be hot flashes (~20 a day, on bad days), night sweats (did not get a full night’s sleep for 2 years), skin thinning (I would bump into something and start to bleed), wrinkles appearing literally overnight, hair thinning, weight gain, breakouts, irritability, mood swings, and depression (even while on medication). I basically made it through the first year clinging to the “knowledge” that chemo after-effects wear off after a year. And I made it through the second year thinking that surely, I must reach that light at the end of the chemo tunnel soon. And as the third year approached and I seriously contemplated suicide, I went to my oncologist and my gyno and said, “I cannot live like this anymore.” The agreed and in spite of the fact that I have hormone-receptor positive cancer, put me on hormone replacement therapy (HRT) – estrogen (a patch applied twice weekly) and progesterone (a pill taken nightly). This went fine, hot flashes disappeared, I finally started sleeping again, and my period came back. Unfortunately you’re not supposed to have a period when on constant progesterone, so I had to go in for an ultrasound and an endometrial biopsy. (Gosh I hope I didn’t blog all this before, but if so, sorry.) The endometrial biopsy sucked ass but turned up nothing bad. The ultrasound actually showed follicles (eggs) in my ovaries, which of course sent me over the MOON – a previous blood test had shown I had no eggs left.

Per the two doctors, I went OFF hormone therapy, because it appeared my body was bouncing back. Oh, not so! All my symptoms came back with a vengeance. I went back on HRT at a lower dose of estrogen (0.05mg to 0.025mg) but the symptoms continued. So I am now back on 0.05. Well, actually not today. But I’m getting there, hang on.

I guess the first thing to note is that my gyno was well aware of the fact that I wanted another child. I discussed it with her in depth on multiple occasions. However, when I called her at one point and asked what to do if I became pregnant while on HRT, she told me, rather coldly, that I should not become pregnant while on progesterone, and that J and I should be using condoms. I told her that seemed counterproductive to me conceiving, and her reaction amounted to a shrug. I then proceeded to switch gynos. (It wasn’t just this – I also could never get ahold of her, and her office once refused to refill my estrogen prescription, stating that their notes showed my oncologist had said I shouldn’t be on it, which was completely – not just incorrect, but an outright lie.) Yesterday I got a letter in the mail stating that she is retiring, and I am not surprised, because I didn’t get the vibe she really cared about me as a person. I don’t think she was loving her job.

When I went to see the fertility doctor in October, she was surprised that gyno had me on a steady dose of progesterone while knowing I wanted to conceive, since PROGESTERONE IS BIRTH CONTROL AND KEEPS YOUR UTERINE LINING THIN. So even if I HAD conceived, I would not have been able to carry the baby because there was nowhere for an egg to attach. 😡 She switched me to – gosh you know I can’t even remember. I think it was supposed to be two weeks on of a double dose of progesterone, then two weeks off. But the double dose of progesterone made my hot flashes come back like whoa, so she cooled it to two weeks on of a single dose of progesterone, then two weeks off. That’s been fine.

Last month, two days before Christmas, I got a period for the first time in four months. Super normal, just like the old days.

This month, on the 21st, I got my period – not even for a full day, for a few hours. A one-tampon period. Then nothing. Honestly, guys, my body has been so jacked up for so long that I didn’t even think anything of it. Just typing that somehow made me want to cry. I guess – here’s the thing, I never thought I’d still be dealing with this shit three years after completing chemo. I thought I’d be, you know, worrying about whether or not I’d have cancer again. Maybe even having cancer again. But not dealing with shitty shitty bullshit fallout related to my treatment. What a load. Anyhow. Four days passed and then it’s like the floodgates opened. I woke and was bleeding again so I put in a super (if any dudes are reading this, that’s the strength) tampon. Four hours later I went to pee and had bled completely through the tampon, through my underwear, and into my pants. I replaced. Four hours later, same deal. THIS WENT ON FOR FIVE DAYS. I was exhausted, demotivated, and had some of the worst cramps of my life for those five days. It’s now day 7 and I am still having slight old blood (brown) discharge.

I conferred with my gyno (new gyno, much better) and have again gone off HRT (as of yesterday). I will remain off for a week and go in Monday to have my blood tested and see where my hormone levels are. Best case (please cross your fingers) scenario – my hormones are returning/have returned to normal and I can stop HRT and go back to having a normal monthly period. I don’t even – I mean I’d still love another kid, but I’m almost 41 now, and after everything I’ve gone through, I’m not even focused on that at this point. All I want is for my body to function in somewhat the same way it did before I had cancer. That’s all.

And here’s the thing. This all sucks so much BUT THIS HAPPENS TO WOMEN ALL OVER THE WORLD ALL THE TIME. Why aren’t we talking about how breast cancer, even when cured, fucks you up for life? Why aren’t we talking about how no one has any answers?!? Like, that is the most stunning and enraging part to me! NO ONE can tell me when/if my body will return to normal. NO ONE can tell me WHY my body is doing the stuff it’s doing. I mean honestly, not even TWO DIFFERENT GYNECOLOGISTS WHO ARE FUCKING TRAINED IN WOMEN’S BODIES UNDERSTAND WHY I KEEP BLEEDING! This is an actual quote from the gynecologist I actually like:

“Interesting that your period comes before you stop your progesterone.”

YEAH IT IS! Everything my body does seems to be “interesting” and “curious.” Could you please tell me why?! I know other women must have gone through this! I don’t believe I am a reproductive freak of nature! I have had ultrasounds and scans and biopsies that indicate everything down there looks perfect and in good working order, so why can’t anyone predict what is going to happen or when or how or WHY?

Sorry I went off the rails there but it is so incredibly frustrating to feel like you know as much as your doctors do about what your body is doing and is going to do, especially when “as much” is essentially nothing.

Also, in conclusion, I am dreading the blood work because I always get my hopes up thinking it is going to be THIS TIME that my blood work comes back normal-ish and it never does. In three years it never has but I know I will still get my hopes up and have them dashed when I find out my damned body is still menopausal at 40 and there is still no one anywhere who can tell me when or if that will change.

That brings everything up to date. I’ll post when I get the blood work back or if anything else happens. And if the post just says “My body still sucks,” you’ll know what that means.

Tell me what to do.

Life is full of decisions. Black shirt or red? This job or that? Eat dessert or not? I’m used to making decisions. I even think I’m pretty good at it.

Cancer was full of decisions too. I read, I consulted, I cried, I researched, and I made every one. And I was confident in every one. But it’s not over. It will never be over.

Because I am cancer’s bitch now. Every day, every minute, every second of my life, I live with the spectre of cancer looming over me. I thought, so naively, that I would get through cancer. That I would move past cancer. But you never do, because you’re never really “cured.” You’re just waiting.

For two years, I have struggled with menopause brought on by chemotherapy. Let me list, just for posterity (a word I just couldn’t remember and had to google because, you know – menopause), some of the symptoms:

• hot flashes
• night sweats
• disorganized thinking
• forgetfulness
• decreased libido
• dry eyes
• dry vagina
• neck cramps
• irritability
• depression
• wrinkles
• thinning hair
• thinning skin

That’s just off the top of my head. My body aged 10 years in three months and this shit came on overnight like a bucket of cold water over the head. But cold water, what a relief that would actually be! I slept through the night last week – something I haven’t done since December, because every single night I wake up numerous times, drenched in sweat, feeling like a fire is burning inside my body. I finally made an appointment with a psychotherapist two weeks ago, one recommended by the survivor outreach nurse at Swedish, because for the first time in years I felt suicidal. I feel trapped inside my own body and the ONLY way out of that would be to ESCAPE THIS BODY.

But that’s not what I want either. In the past, my suicidal thoughts have been linked to brain chemistry, to feeling worthless, useless, a burden. I know I have important jobs now – I’m a mother to two amazing children, I’m a friend, I’m a wife, I’m a sister. I want to watch my children grow up, I want to grow old with my husband, I want to change the world by filling it with kindness every day. So it’s not chemical – it’s situational. And most situations, you can rely on them ending, eventually. But what when the situation is a body that has been fucked up? What when it could be a year or a decade or even longer? What when there is no end in sight and you’re trapped day in and day out in a body that is betraying you? And could ultimately betray you to death?

So I decided to take control. I went to my gyno Tuesday and I laid out my situation and she put me on an estradiol patch and progesterone pills. And suddenly I felt liberated. It’s too soon to know if it’s working – the hot flashes continue, and it could take up to three weeks to know – but I had hope. Hope that things would get better. And more than that, agency – over my own body, over my life, over what cancer took from me.

We talked about it, of course, and I already knew – hormones are verboten for those of us with ER+ PR+ cancer. In fact, if you have been following my blog, you may remember that the actual full treatment for hormone+ cancer includes a drug called Tamoxifen that actually blocks naturally occurring estrogen and progesterone and sends the patient into menopause. I opted out of Tamoxifen, but it turns out I didn’t need it – my body went into menopause on its own. So in brief, hormones bad, make Kate’s cancer grow. But lack of hormones also bad, make Kate want to die.

Where the hell does this leave me? Fucked.

After floating for the last two days, I just got a voicemail from my gyno. She spoke with my onc, with whom I have an appointment tomorrow. He is not happy. She reiterated several times that he understood why I had chosen to go on hormones, but that he was not in support of it because naturally they have no data on what it does to survival rates. But since we know that blocking hormones increases survival rates, I think we can safely guess what increasing hormones does. Or can we? I mean, who the hell really knows?

So tomorrow I go meet with my onc, who you may remember I absolutely adore. I trust and respect him beyond words, so I already know this is going to be a tough appointment. And I don’t even know what to do at this point. I feel like whatever decision I make, I lose. I literally have to choose my mental health and physical comfort OR potentially dying of cancer.

And if it were just me, if I was a single, childless woman, I know what I would choose. I’d do the hormones and just live until I died. So maybe that’s my answer. But it’s just not as simple as that.

So here I am, wedged between a rock and the hardest of places. And standing here, I raise my middle fingers to the sky and say, FUCK YOU CANCER. FUCK. YOU.

Here be dragons.

I am writing this for me. I am writing this because I don’t know what else to do. I’m writing this because sometimes, for me, writing is a form of bloodletting, and I feel weaker but better afterward.

I am writing this but I don’t know where to start. I don’t want sympathy. Empathy, sure, maybe, if someone has been there. It’s a start. But it still won’t change things. Won’t help. I definitely don’t want pity. Good god, not that.

When I get here there’s a phony Kate that I have to push to the front. She smiles. She laughs. She asks questions and does the things she’s supposed to. Maybe she seems normal, but she doesn’t feel it. She feels like a cheap plastic imitation of me. Vacant. Vapid. She’s doing her best, don’t get me wrong. But she’s only covering. This isn’t her full-time job.

I am not sure what is going on. My medication is the same. I am depressed about some situational things, yes. I am depressed because three years ago, my body aged ten years in three months and it has not come back. I am depressed by the constant hot flashes, the night sweats, the muscle tension, the aches and pains, the forgetfulness, the thinning hair, the ache inside of me where I swear there was supposed to be a final child. (And for this last, I feel guilty, embarrassed. I have two beautiful children, what am I complaining about? I cannot explain the feeling that there is someone missing, that the two pregnancies I lost haunt me, that I am certain, somehow, we are meant to be a family of five – but I digress, and please don’t hate me for my greed.) The weather is soul-sucking. My house is a catastrophe. I miss my grandmother. And my Dad. I can’t remember the last time I slept through the night. I’ve had nausea and the jitters for the past two days. Nothing feels good, nothing feels right.

I don’t – if you don’t fight this battle, I’m not sure I can describe it for you. And I know my description will be only mine, because each person fights so differently. But if you can imagine a day when you are down, for no specific reason, just down, and then imagine that there is nothing that can make you feel better – that is a start. “Go shopping,” friends tell me, “get a massage.” “Self-care, meditate – want to go to the movies?” Oh, and my favorite, “Exercise!” When I’m well, there are things I love. Taking photographs, dancing, making mix CDs, organizing, socializing, learning. When I’m here, where I am now, none of that sounds a) appealing or b) worthwhile. There is not one thing I want to do at this minute. Even writing is a struggle – I am forcing myself, but I feel myself rambling and ready to quit at any moment. I’m not illuminating anything. I’m just prattling about nothing. And right now, this is my every day. My everyday.

I feel terrible that my kids are seeing this, this gray mother, not the mother they’re used to, not the mother they deserve. Will they remember these days? Will it ruin them? Motherhood is the only thing I’ve ever been truly good at. I can’t fail at that too.

I’m seeing a therapist tomorrow. A new therapist, he specializes in post-cancer care. It feels pointless, honestly, although I know from past experience it’s absolutely not. Now that I’ve typed this all out I feel no better and just want to delete it but it’s a window. And I know you can’t just see in windows, but also out. Here’s to seeing the sun soon.

Complicated: an addendum

Complikated is what I named this blog, because it’s life, and it’s me. It’s everything, really; nothing is ever simple, or what it seems.

Complicated now perfectly describes my mind’s relationship with my body. Am I strong or weak? Did I survive or surrender? Am I young or old? And does any of it matter?

It seems like this setback is about a miscarriage – although can I even call it that? I was three days attached to an idea, I’m not sure if that even qualifies. But that could just be me selling myself short, as I always do – my births don’t count because they were C-sections, my breast cancer doesn’t count because I only needed a lumpectomy and am now cancer-free. That latter is a topic for another blog, though, so let me return to the topic at hand. This is and isn’t about a lost pregnancy, or the idea of a lost pregnancy. That is what put me here, back inside a dark space, groping for answers that don’t seem to exist. I am grieving, yes, because as stupid as we knew it was, we were making plans. But that’s not the whole of it. Not nearly.

I am living inside a body I no longer feel connected to and that I do not understand. Before cancer, my period came reliably – every 26 days before birth control, every 28 days after. It was the same period every month, light, then heavier, then a day of nothing, then a final day. My skin always broke out the week before. I always thought I looked thinner when it was over. It only disappeared when I was pregnant and came back soon (too soon) after I was not. I knew the cramps. I knew the mood swings. I knew my body and what it was doing.

Then cancer. Why? Who can say. Too much milk as a kid. Years of birth control. Eighteen years of second hand smoke. Adverse Childhood Experiences.  A gene they have yet to identify. Dumb luck. But suddenly my body was a stranger. Some part of me had turned against itself and I didn’t know why or how. And to treat it, I had to abuse myself, first with surgery, then with poison, then with more poison. I had to make decisions based on data, not on what my body was telling me, because I could no longer trust my body. I COULD NO LONGER TRUST MY BODY. This body that has walked me through 39 years, two marriages, three pregnancies, two children, life, love, depression – it had been keeping secrets from me and I could no longer believe what it had to say. I could no longer assume fresh air and plenty of vegetables and walks in the woods were enough. I had to take up arms against my own body, and so I did.

I think I knew all the possible long-term effects. No, that’s not true, I didn’t. I didn’t know about tendinitis and IBS, two issues that now plague me post-chemo. I did know about the fertility issues, but I think I didn’t believe. So reliable, my period. Besides that ruptured tube, my fertility was a given. It was never could we have a third child; no, we were so naive, so oblivious to our privilege – it was would we, as in, did we want to. As though it would happen based upon our whims. As though we could control it. Even before chemo. Even after.

I feel myself growing long-winded and obscure now, so I will just stop meandering and get to the meat of the issue, which is that this is one more indication that my body still operates on a separate plane from my mind, that it is still unreliable and untrustworthy, a cage I now feel trapped in instead of a vehicle my spirit is at one with. Somehow my butterfly of a heart got it into its head that it was free, and in so doing, bashed itself against the walls of its cage until its wings were broken and the cage floor covered in dust. And so it is about the miscarriage, of course, but only because it brought my mind back down to earth, reminded it of who is in charge, that it should expect nothing joyous anymore from this deceptive shell.

I know this is dark, and I feel the need to apologize for that, but as I said, this has cast me back to a dark place. A slap across the face to bring me back to the reality of my situation, which is that I have survived, but only just, and that I cannot count on anything.

One Year Later – Cancerversary Post

September 11th was my one-year cancerversary. (pause for applause)

I don’t really know how I feel. And I don’t even know what I’ve covered before and I don’t feel like going back and looking so I’m just going to start fresh here. Some of the things I say might be repeats – just take it that I still feel the same, as opposed to me repeating myself.

Well, first, I had my first post-treatment mammogram yesterday. When I had my pre-treatment mammogram, it was nbd. I mean it wasn’t something I’d choose to do, it didn’t feel good, but it wasn’t awful.

Yesterday was awful.

I don’t know why and I haven’t yet googled it, but the mammo on my right breast (RB, or Ruby as she came to be known) was excruciating. It didn’t help that it had to be done at three different angles and then twice more with a magnifying lens. If you haven’t had a mammo, you probably only have a vague idea about what it entails. Essentially she took a shot of each breast with me sitting and facing the machine, one boob at a time smashed between a plastic tray and a metal tray, which are pressed together by a machine and then given a final hand crank. I then stood for all of the remaining shots, which also involved smashing. By the final shot, which was the very most painful, I started feeling nauseated. As soon as the shot was over I sat down and put my head between my legs so I didn’t pass out. Then I got all whiny and emotional and why me for a second and started to cry before I glanced at the People magazine I had been reading on the counter, which was open to a blurb about how the remains of an 11-year-old kid who’d been abducted at gun point 27 years ago had finally been found. And suddenly I realized breast cancer is honestly far from the worst thing that could happen to me.

Something I know I haven’t touched on before now is that my period came back that one time, but hasn’t returned since. The hot flashes came back with a vengeance and I definitely experienced some real sadness, verging on depression, as a result of the way my body has been affected. It’s hard because the symptoms I continue to experience aren’t from cancer, but from chemotherapy and/or radiation – I had no symptoms from cancer. So there are times when I think, maybe it would have been better if I hadn’t found it. Maybe I should have just let nature take its course and allowed the cancer to do what it was going to do. Of course that’s absurd, but sometimes the physical remnants of the treatment make me a little absurd.

I do wish they had prepared me better for what to expect after, but I suppose that would probably drastically reduce the number of people who would be willing to go through treatment, thus drastically reducing survivorship. My last chemo was March 30, so my 6-months out date will be September 30th – but if you’re really counting when that chemo was totally finished, probably more like mid-October. Six months is significant because the general consensus is that all chemo-related symptoms should resolve between six months and a year post chemo.

Symptoms I continue to struggle with include sore hips, knees, and back, stiffness after sitting, swollen, painful hands and trigger finger in the morning, hot flashes and loss of fertility, digestive issues (enough said), and of course the aforementioned tender right breast. I also have soreness and scar tissue buildup at my port incision site and also along where the catheter was so that when I stretch my head back it looks like the catheter is actually still in my neck.

All these things may sound trivial on their own, but when combined, they have presented a difficult hurdle for me. I was very strong and (I thought) healthy prior to my diagnosis and treatment, so to go from a mom who could do everything with her kids to a mom who struggles to go from sitting to standing has been a real blow. And funny enough, HAHA, I left loss of mental acuity and ability to plan and organize out in the paragraph above because I thought that was finally resolving, but AS I AM TYPING THIS my therapist just called because I was supposed to be at her office at 2 and it’s now quarter past – I completely forgot. So yeah, safe to say my brain is still being affected.

This has been an incredibly whiny post and for that I apologize. I guess the crux of what I am getting at is this: yeah, it’s over, but it’s not OVER. I have hair and eyelashes again, my mammogram was clear, I’m six months out of chemo, but I’m still affected every day, both physically and mentally. So I guess – just don’t expect rainbows and unending gratitude from breast cancer survivors. Getting the cancer out, getting through treatment, that’s a battle. But I’m still fighting the war, and I think in some ways I will be for the rest of my life. Just because cancer didn’t kill me (yet) doesn’t mean everything is back to normal. This is a longer road than I anticipated.

But I’m walking it, and I’m grateful to be doing so with so many people who love and support me.

Depression makes its sneaky return?

So for the past four nights I’ve found it very difficult to sleep. I have always suffered from insomnia, but usually Trazodone helps take the edge off, and the fatigue from all the treatment has really kept me sleeping. The last few nights I have averaged 5 – 6 hours, and that’s not solid – that’s on and off. That may sound fine to some but as someone who really needs 8, I’ve been struggling.

Additionally, my appetite has suddenly tapered off to nothing, which is VERY unusual. I didn’t even eat a cupcake at Conor’s birthday! Finally, I have been feeling very lackluster – no motivation, no desire, lots of guilt. Couldn’t get a sitter to go a friend’s event last night and felt terribly about it; have a sitter tonight for plans I’ve really been looking forward to, and now have no desire. So now I’m wondering: is my depression returning?

Of course, it could be all the chemicals still in my system, or my hormones readjusting. (More on that later, actually; hard conversation with Dr. K on Wednesday [re hormone treatment] that could be contributing to the blahs). It could also be that I have been battling a cold and am now having GI issues. Or, finally, the insomnia could of course be causing me to feel depressed – it wouldn’t be the first time.

Regardless, I am nervous, and in that curious depression quandary of feeling desperately lonely but not wanting to talk, of wanting company but not wanting to interact. And I’m just trying all the while to act normal in front of the boys because I don’t want them to be children who grow up remembering “When Mom had one of her spells!” I’ll just try to stay aware and if things degrade I’ll talk to a psychiatrist about my meds.

As far as hormone treatment, we met with Dr. K Wednesday and of course he strongly recommended I do the once monthly Lupron shots. I told him no, and he was – I guess probably just concerned, but of course I felt it was disapproving. He asked if I could tell him why, just so he knew, and I started crying as I described the hot flashes, night sweats, wrinkles, roughening of the skin around my jaw, weight gain – all of which happened while I was on Lupron during chemo. I told him I had no problem with growing old, no problem with turning 45, but that I’d like to do it in seven years, when I turn 45. He understood and was supportive, and we agreed to talk about it again down the line. Complicating things for me is the fact that a friend’s mother had breast cancer roughly ten years ago, and she did the full course – chemo, radiation, and hormone therapy – and it has now metastasized. So it’s all a roll of the dice anyhow.

After we left I realized it’s not just the symptoms I don’t want – it’s the daily reminder of those symptoms. That I had cancer, that I can have it again, that it could kill me. I mean it’s always going to be at the back of brain anyhow, but I don’t need to be reminded three times a day when I take the Gabapentin to combat the hot flashes (which by the way I am now off of, yay), as well as every fucking time those hot flashes occur.

The other day I went in to get sugared and it was an aesthetician I hadn’t met before, as mine is out sick. She asked me about my cancer and treatment and when she found out I was through, she remarked, “So you beat cancer.” Which, I am sure she was trying to be nice, but no. No I haven’t and honestly I can’t help but think that I won’t really have “beat cancer” until I die of something else. On the plus side, I told Julian this and it’s led to all sorts of great jokes, like me on my death bed and my last words being, “Suck it, cancer! Heart disease wins again!” (Julian’s: “Yes! Hit by a car! Take that, cancer!”)

Starting Monday, Julian and I are going to try to do a 10-day green smoothie cleanse. I am doing it to get rid of all the poison left in my system and to try to be healthier – I’m hoping it might also help with my joints (which are terrible, and contributing to my depression). He is doing it because he is supportive and amazing. Dr. K gave it the thumbs up so I’m hoping for the best.

This turned out to be a long, rambling post, but I guess I had a lot inside me. Happy Saturday – get out there and live.

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.

Radiation 18/35

Not such a good day.

The radiation is really starting to take its toll on my skin. My right nipple is significantly darker than my left, and my entire breast feels heavy. I am developing a red, spotty rash from above my nipple to into my armpit. Meanwhile, I have vitiligo in my armpit, so the radiation has made it very red and tender, like a sunburn. Unlike a sunburn, the redness and soreness do not go away. In fact, I learned from my tech today that my skin woes are really only just starting – they will get worse, and continue to worsen even after I am through with radiation (June 9). So essentially I am looking at my skin darkening, burning, and possibly (likely) blistering and opening before this is all over, which really won’t be until the end of June.

I am tired. Not fatigue-tired, thankfully – that hasn’t hit me yet, though I am sure it will. I am mentally tired. I am tired of fighting this enemy that I can’t see or feel. I am tired of waging war on my own body to combat something that may or may not even be there. It has been 7 long months since my first surgery, and I have mostly stayed positive, but today, as I lay on the table, holding those fucking pegs, I thought to myself, “What if I just died? If something killed me, then I wouldn’t have to do this anymore.” I don’t mean suicidal, though I have been there – I mean just, I don’t want to do this anymore. I don’t want to face one more day of self-harm for a result I may or may not see. And my friend, her mother went through all this shit – surgery, chemo, radiation – and guess what? She just had a tumor removed from her spine. Metastasis. So is this worth it? I really don’t know.

I want to quit. Just say, fuck this, I have done enough, been through enough. There is only so much the human mind, spirit, and body can handle, and I am at my limit. When you start to think death is a preferable alternative, I think it’s safe to say you’ve used up your reserves and are pretty much at the end of your rope.

But then I talk to my breast surgeon, who tells me he doesn’t ever think I am going to deal with this cancer again. And I talk to my Mom, who offers words of sympathy and encouragement. And I talk to my husband, who makes me dinner and takes the kids up for their bath so I can write it out. And I talk to the ladies in my Facebook cancer group – some of whom have been through this and come out the other side, some of whom are facing it head on right now, just like me – and they offer words of camaraderie and praise. And I realize: this will be all right. I will be all right.

So yeah. Things suck today. But I’ll go back tomorrow, and every damned day until I’m done, and I’ll suffer and have bad days but in the end it will be behind me and if the cancer does come back, at least I know I can say I did everything I could.

Radiation 12/35

I was cruising along so well that I got comfortable and thought maybe I could do this without any majorly ill effects. I was wrong. And I’m not even halfway done – the treatment cycle or the week.

My right breast is swollen and tender. My right nipple has gotten darker and is sore like a bruise – like a terrible sunburn, the kind that turns your skin nearly purple. Maybe I could deal better if I didn’t have – and LOVE – my children climbing all over me all the time, kneeing me in the chest as often as resting their heads on it. The scar in my armpit from my lymph node removal gets pinker and pinker, and the skin looks thin – not what I would expect from scar tissue. I am slightly afraid it will split, as I have read radiation skin can and often does.

I will ask my doctor about it when I see her Friday.

Funny, the side effects from this treatment really are minimal compared to chemo, but somehow it seems worse in some ways. I think the side effects of chemo were immediate and tangible, but the side effects of radiation are cumulative, so there is more anxiety involved.

And speaking of chemo – six weeks out from the last one today, and the joint pain unfortunately continues. Advil helps, but I try to use it sparingly as I don’t need a destroyed liver on top of the joint pain! Have had acupuncture twice and have noticed no effect (other than the hour lost sitting bored with needles in me). I’ll keep trying.

So, blah. Not a great day for me today, BUT – we did get Gregory’s ear tubes yet and he has had an immediate and overwhelming improvement in his hearing that has made us all giddy. So I’m trying to focus on all the beauty and good outside of my own body for the time being.

Post-Chemo Joint Pain

This is another one of those blogs I am writing more for the benefit of others who might go through the same thing than for my friends and family to read. That said, feel free to read on!

On chemos four and five, I found I experienced joint and muscle pain a few days after treatment that would last several days and then subside. I experienced the pain again after my sixth and final chemo… but it has not gone away.

I waited some time to contact my oncologist, expecting the pain would go on its own, that perhaps it was lasting a bit longer simply because the chemo meds had built up in my system. When I did finally contact him, he was stumped and asked me to make an appointment, and said that he’d do some research in the meantime. I did some research of my own (through Google, of course – does that actually count as research?) and discovered a number of people complaining about the same thing but no actual articles by anyone about the cause or how to treat it.

When I saw Dr. K, he told me he’d discovered that post-chemo joint pain is “a very uncommon but very well-documented” side effect, and that I could expect the pain to subside within two months. I wish I had asked more questions – such as what causes it – but I was so relieved that it had an expiration date that I didn’t even think of it.I did ask him how to treat it and he told me to take OTC anti-inflammatories, like Advil.

It’s been a couple weeks since then and I am unfortunately still in crippling (literally) pain. I am fine when I am up and moving, but if I sit for more than a moment, my hips and knees scream in pain when I finally rise. Sitting on the floor – which, with two toddlers, is a HUGE part of my day – is not only terribly painful to get up from, but also embarrassing if I have to do it in front of others. I look like an overweight, weak baby giraffe, trying to get my legs under me. My hips and knees are not the only joints that hurt, however – my feet, hands, and shoulders also ache, and in the morning when I wake up, I have to clench and unclench my hands multiple times just to get them to work properly.

I am really depressed and stressed out by this pain. It is a part of my daily existence and has made pretty much every part of my life either more difficult or more embarrassing – oftentimes both. I asked Dr. K if I could go see an acupuncturist and he said by all means. I booked with an acupuncturist at Swedish, but they can’t see me till the 24th, so I have begun seeing a doctor who is SUPER conveniently located about 4 blocks away. I had my first session yesterday and I have to say quite honestly that so far I have not noticed any difference (he said I should notice an immediate difference) but I have two more sessions scheduled for this week.

I am also going to email the American Cancer Society to see if they have any advice or information about this, which I will add here if I get it.

If you’re going through this too, you’re not alone! And if you’ve been through this and recovered, I’d love to here advice, suggestions, or even just words of encouragement. 🙂