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.

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.

Tomorrow: Chemo

Tomorrow is the big day – chemo session number one. I have been seeing my BC sisters struggling through chemo, being hospitalized, feeling defeated, vulnerable, and it has prepared me for the worst. Still, I keep hoping for the best – a friend told me his Dad had chemo and was never sick nor did he have any side effects. It happens to some people. Why not me? Keep sending me those warm, fuzzy vibes.

As a refresher, tomorrow I will be getting TC (taxotere/cytoxan) chemo for 3 1/2 hours, beginning at 8am (although I think the actual chemo part doesn’t start till 9ish – check in and blood tests first). I will be getting it through my portacath, which incidentally is still sore. I will also be getting Lupron, which shuts down my ovaries. Studies have shown this helps preserve fertility in pre-menopausal women. Additionally I believe this will also block estrogen from reaching any of those little ER+ cancer cells that might be hanging out anywhere. Down side: I’ll basically be menopausal, with all the awesome symptoms of that, for the duration of the chemo.

I talked to my doctor and we have opted to go cycle one with no Neulasta or daily shots. I am young and healthy, so he says he will check my WBC count before the next cycle. If numbers are good, we can avoid the side effects of those meds. If not, he says he will “have to encourage” me to get them.

Right now the biggest issue for us is everything is the unknown. Will I get sick? How sick? When? Will I lose my hair? All of it? Some of it? My eyebrows? Will I get fat? Lose weight? Be nauseated? Constipated? Have diarrhea? Anything is possible. Nothing is possible. Which makes it all rather impossible.

I am scared.

I am scared I am scared I am scared I am scared I am so damned scared.

I don’t know why I just – I am having like a fear panic attack. I am supposed to be going out with a friend tonight and my hands are shaking and I am nauseated. I assume it’s because I will be seeing the doctor tomorrow and finding out my treatment schedule, but I don’t know why that should scare me any more than what I already know. Still.

I am so scared.

I’ve never known fear

I hate this. I HATE this.

So here I am. I feel great, my wounds are healing. They cut out the cancer. It’s gone. …right?

I’m being a mom, I’m being a wife, I’m getting ready for the holidays, I’m organizing, bill paying, cleaning, dog walking, I’m living my life the way I always have. I’m a firecracker.

And they tell me, “Do this, just in case.” And, “Also do this.” And the thing is, I feel great, and those things will make me feel horrible. Each one has not only side effects during treatment that make life less livable, less enjoyable, but also potential long-term effects. Cosmetic effects – shrinking and firming of the breast, permanent hair loss, skin discoloration – and scarier, more devastating internal effects – more cancer (it’s called cyTOXan for a reason), loss of fertility, permanent menopause.

So I feel great, I think the cancer’s gone… but just in case. Just in case, I should risk my mental, emotional, and physical health for a possible positive outcome. The doctors say, the statistics say, the people who love me say – do it, just in case.

Would I rather regret something I did, or something I didn’t do? What if there end up being no regrets at all? Or what if the treatments take away my sparkle?

Waiting and changing

So the reason I haven’t posted anything cancer-related lately is there has been nothing to post. We met with that medical oncologist who made me really unhappy and he sent away for the Oncotype DX test, and there was an insurance snafu, so the results are not back.

In the meantime I made appointments with two other medical oncologists, both recommended by other women who have been through the breast cancer wringer. We met with one today and I cannot even begin to explain the difference. I left the last appointment feeling defeated, worried, unhappy, helpless, and judged. I left this appointment feeling supported, understood, heard, hopeful, healthy, and capable. Where the other doctor basically presented us with statistics and a one-size-fits-all treatment plan, this doctor (also a male) was flexible, agreed that the treatment should be my choice and fit with my life, and cited numerous examples not just of women delaying taking Tamoxifen but also of using a totally different drug, Lupron. He also noted my history of depression and stated that these drugs are contraindicated for depression – something the other doctor didn’t notice/mention – and said that would be a concern and something we’d have to keep a close eye on.

This doctor has mannerisms and phrasing that were so familiar and reminded me so much of my Dad that I finally asked him where he was from. He told me New York City, and when I told him I was from Philadelphia, he said, “Oh you’re not a Phillies and Eagles fan are you?” and snarled disparagingly. LOVE.

Several times during our meeting he touched my hands or my shoulder gently and reassuringly. Everything about him was the polar opposite of what I experienced with the other doctor and I actually cried during this appointment as well – from relief.

I have been walking around for the past two weeks with a gray cloud over my head, feeling fearful and depressed about the future, uncertain how my life was going to play out at the hands of medical professionals. After meeting with this doctor I feel in charge of my treatment, the hows, whats, and whys, and like I have a partner in my care plan, instead of someone who will dictate what I should do and show disapproval if I do not agree.

Could not be more grateful. Really looking forward to moving through this now instead of dreading it.

Stupid DST

I know people always talk about getting rid of DST but seriously, can we do it already? I’ve been lying awake in bed since 5:40am just thinking, and that’s not good for anyone.

So basically yesterday was scary as hell. Because when they talk about recurrence, you think (or at least I think) of it as a repeat of this time: you have a lump, we’ll now remove it, you’ll recover. But the thing I have to be constantly reminded of is that my current case is a best case scenario. If I have a recurrence, it COULD be: you have a lump, the cancer has gone to your lymph nodes, it’s in your bones now, you’re going to die. In the end, when choosing whether or not to follow the recommended treatment plan, the question is: are you feeling lucky, punk? And right now, I do. But is that enough?

I have really been thinking a lot about the baby we were talking about having – I mean, prior to yesterday. I’d say it’s been on my mind daily. Will it be a boy or a girl? If it’s a girl, what clothes of the boys will she be able to wear? How different  will s/he be from the two I have? Will s/he nurse as well as Connie or be a breast refuser like Gregory? I think about it so often it’s almost like I’m already pregnant instead of more than six months out from even starting to try again. I know this all sounds so Sally Homemaker which really isn’t my character but as I said, I really feel like I found my calling in becoming a mother. Yes I have two gorgeous boys but I’d probably have another three if circumstances permitted (they do not – if we do get to have another, it would be our last). Anyhow I’m blathering but maybe this sheds some light on why I’m so resistant to treatment at the onset – I have been basically dreaming of another baby on a daily basis and assuming (stupidly) that if my reproductive system cooperates it’s in the cards, and yesterday was just like a slap in the face.

We are having the Oncotype DX test done. I don’t really understand it fully but I guess it’s a measure of how aggressive a cancer is and how likely it is to recur. If I’m at the low end, I have more freedom with choosing my treatment plan. If I’m medium, they strongly recommend the treatments I have mentioned and possibly chemo. And if I’m at the high end, well, it’s essentially “Have all three treatments or die.” So yes, we’re waiting for yet another test result.

I’m just so sad and angry. I don’t know where to put all this – garbage. I feel completely at a loss, restless and helpless. Such a nose dive from all the good news of the biopsy.

Chocolate and tears

What do you do when, after loads of great news, you get a whole face full of shit?

You sit down and eat an entire chocolate bar, that’s what.

I went to see the radiation and medical oncologists today. I have been dreading it because I knew I didn’t want radiation or endocrine therapy (Tamoxifen) and I knew they would tell me that’s what I had to do. I was not disappointed in my expectations.

I can’t even get into all the stats and details because frankly my head is swimming and so were my eyes. Radiation takes your chances of relapse from 30% down to 3%, or something like that. So I grudgingly agreed. I go in on 12/14 to get prepped and tattooed (37 years without a fucking tattoo and now I have to get one and it’s not even a black cat). I’ll be starting off my new year with radiation, so so far, 2016 is not looking much better for me than 2015.

Then off to the medical oncologist for more devastating news: chemo is not actually out of the question, and no matter what, they strongly recommend I do the endocrine therapy. As previously mentioned, this is five years of medication that stops your breasts from receiving estrogen and basically gives you five glorious years of menopause like symptoms. Given that I am 37, that means essentially I’d have five years of menopause before going into actual menopause. Additionally, Julian and I have been seriously discussing trying for a third and final baby, starting the process this summer, and you should not (and by should not I mean cannot for health and safety reasons) get pregnant and/or nurse on Tamoxifen. He started talking to us about seeing a fertility expert, harvesting eggs, etc, and I just got SO fucking angry. First of all because I hate the fact that it’s a foregone conclusion that they recommend Tamoxifen so therefore I will take Tamoxifen and it doesn’t matter what else I have planned in my life or what I want to do. Second, I hated being told that by a man because what the hell does he know? Has he been through menopause? Has he had breast cancer? Has HE taken five years of Tamoxifen?

Finally after years of feeling like I can do most anything adequately but nothing excellently, I found out what I am really good at: being a mom. I love it, I enjoy it, I am confident in it, and I make awesome little people. And now that I am hitting my stride and ready for the final installment in our fantastic family, BAM. God says eff you, no more kids. Instead you get five years of hot flashes and possible uterine cancer, and guess what? You might still get breast cancer that goes systemic and kills you. HAHA GOOD ONE RIGHT?!?

I am sad and angry. I know I need to see some other doctors and get second opinions but right now I just want to say screw it and pretend like I never had cancer and do nothing. And if it happens again and kills me well at least I will have gotten to live what remains of my life in the way I want to, doing the things I want to do, instead of burning the hell out of my boobs and ingesting copious amounts of chemicals.

I just keep repeating again and again, “I am not taking that drug. I’m not. I won’t do it.” But I’m afraid too, that if the breast cancer returns I will blame myself like crazy.

We’ll be out of town next week so I guess I will use that sort of down time to research doctors and make appointments for second opinions before rushing ahead with anything. But this all sucks and really has me down.

And oh yeah, someone broke two windows on my car on Saturday so they could steal the kids’ diaper bag, which Araceli left in the car. Fuck you, 2015. No seriously. Fuck you.

Tomorrow

Scared, sad, anxious, I have a feeling sleep will be hard to hold on to tonight. I’m most dreading the first glimpse of poor Right Boob after it’s all done. Second biggest worry is what treatments they’re going to suggest after, the research I’m going to have to do, the medical professionals I’m going to have to talk to, the decisions I’m going to have to make.

Wish me luck, less than 13 hours to go.