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.

WP_20160516_15_23_58_Pro

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.

WP_20160516_18_33_36_Pro (2)

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.

WP_20160511_10_27_48_Pro (2)

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. 🙂