Upcoming Surgeries – Cyst Excision, Rectocele Repair, Hemorrhoid Removal

The saga of my bizarre and complicated body goes on.

Thursday I will be having a small cyst excised from my scalp. No big deal, I don’t even have to go under and I can drive myself home afterward. Not excited about it, but not too nervous.

Next Friday, the 3rd, I have a dual surgery scheduled and I am writing about it because I can’t find a lot of first-person accounts online and I really wish I could because I AM nervous about it. And also it’s not the type of surgery you bring up in casual conversation, which means I have basically not told anyone about it, but it’s a serious surgery – I have to go under for it. So this will be my introductory blog on the subject and then if you want to know more you can read the follow up blogs on the procedure and recovery.

Ever since I can remember, I have had jacked up digestion. Then during chemo I had c diff not once but TWICE, and since then have had IBS. So my whole digestive system is a mess. Add to that two full-term pregnancies and you just have a real train wreck.

One of the issues is a rectocele. I won’t get into all the specifics of the problems it causes (you have Google), but here’s the brief definition from the Mayo Clinic:

A posterior vaginal prolapse, also known as a rectocele, occurs when the wall of tissue that separates the rectum from the vagina weakens or tears. When this happens, tissues or structures just behind the vaginal wall — in this case, the rectum — can bulge into the vagina.

I would love to indent that to set it off but WordPress has completely changed the way you format blogs since the last time I posted and I can’t figure out how to. Sorry.

Anyhow I have been putting off rectocele repair surgery for a LONG time for a lot of reasons but over the past year I’ve had not one, not two, but THREE thrombosed hemorrhoids and the theory is the rectocele may be contributing to them. Don’t know what a thrombosed hemorrhoid is? You’re so lucky! I had one for my birthday last year. Here’s the good ol’ Mayo Clinic again:

If blood pools in an external hemorrhoid and forms a clot (thrombus), it can result in:

• Severe pain
• Swelling
• Inflammation
• A hard lump near your anus

YAY! I can 100% confirm the severe pain and can also inform you that the first one I had was the worst one and it lasted nearly 2 weeks because I am an overachiever.

So I’m finally getting the rectocele repaired, and at the same time, I am getting extra skin removed and any visible hemorrhoids repaired/cauterized. I don’t know all the details to be honest with you, but I will be finding them out (presumably) at my pre-op consultation on Thursday (right after I get the cyst removed). And then I will be sharing them with you.

All this goes to say that yes, I am continuing my journey toward being bionic. And please keep me in your thoughts over the next two weeks.

Sometimes ya just gotta blog it out.

Well, first of all – still in menopause. Hormones still whack. But a dubious psychic told me Saturday night that I’d have twins in 2 1/2 years. So, you know. Stay tuned for that.

I was scrolling through Facebook today when I came across this outstanding article: A Woman in China Tried to Cure Her Cancer by Swallowing Maggots Oh yeah she did! Because “someone told her” it would work. I read the article, while trying to stop my eyes from rolling out of my head, but here’s the thing – although I’m sure most Americans are like, OH MY GOD THAT IS NASTY WHAT THE HELL WAS SHE THINKING, it is no worse than some of the other wacky, stupid sh*t people have suggested I try to deal with my cancer. Like this bananas “cure.”  Or of course let’s not forget the “doctor” who “blew the whistle on chemotherapy.”

In a twist of fate, mere hours after I read about ol’ Maggot Snacker and mused on all the cancer misinformation there is out there, I saw a post about thermography being the new “gold standard” in breast cancer diagnosis, better than mammograms. I was immediately intrigued, in spite of the web address (Dr. Jockers? Uhhh…) A brief Google search turned up an article by the FDA regarding the fact that thermograms should NOT be used in place of mammograms and an NIH study that indicated they are less effective than mammograms but can be used as adjunctive diagnosis tools. Bummer. Nobody hates a mammogram more than this large knockered lady, believe, but I’d rather have a million mammograms than cancer again. I posted these links to my friends post, and her very kind reply was one I have come to expect, much as I loathe it: that the FDA is not looking out for us, they are following the money, that they have a hidden agenda (I guess they prefer squashing boobs to heat scanning them?), that ethical healthcare practitioners are few and far between, and that in other countries with better healthcare systems than ours, thermography is treated as equal to mammography. I asked how she explained the NIH study, and a friend of hers chimed in with a quote about how studies now are unreliable because they are done only to support (you guessed it) the FDA/the government. I also asked which countries specifically believe thermography is equivalent to mammography but she has not seen my question/not replied yet.

Guys, I don’t trust the government any more than the next guy. I think our healthcare system is jacked. I hate that so many things follow money, and I have a HUGE problem with Big Pharma. But at the same time, there are things that don’t make sense to me. If thermography is so great, why wouldn’t the FDA/other healthcare agencies be investing in that and jacking up the prices? Why wouldn’t insurance be covering it (it doesn’t) at a premium, like they do with everything else? Are we really to believe the government wants us not just sick, but dying of cancer?? That they like the additional (small but real) risk of cancer presented by the X-ray technology in mammograms? I just – I can’t buy into that. I don’t think my oncologist likes me sick. I don’t think my amazing, kind-hearted brother-in-law is becoming a doctor for the express purpose of making money by deliberately keeping people unhealthy. And I have to wonder if the people who believe these things actually personally know any doctors. (And I don’t mean Dr. Jockers – whose house, incidentally, you can apparently get a tour of on YouTube. Cool!)

Whenever people post about or message me with junk science – and make no mistake, this is junk science – with regard to cancer, it both personally offends and outrages me. The spread of this misinformation is so pervasive and SO DAMNED DANGEROUS that I just don’t know what to do or say about it. I pray none of the women in my life are diagnosed with breast cancer in their lifetimes, even as I know that is an impossible wish. I celebrate when there are REAL SCIENTIFIC BREAKTHROUGHS – like the one detailed here by CNN, wherein the big, bad, malicious FDA has approved the first immunotherapy treatment for breast cancer. (I do not know how they will continue to thrive as an organization without all that chemotherapy money, but I guess time will tell.)

I guess my plea is this: Please just research. Ask questions. Ask not just Facebook and Dr. Google, but real doctors, real nurses, friends, colleagues, and survivors. Ask everything and assume nothing. Advocate for yourself, always. Stay on top of your screenings. And don’t spread cancer diagnosis or treatment news or rumors as gospel unless you know they are corroborated and vetted and safe. Because someone is looking at you as an an intelligent advisor – maybe even as an expert – and you don’t want to be the reason they make a decision that could result in their death.

Unless you’re the FDA. Then I guess you want death and discomfort for all.

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.

September

Hi friends.

As I approach my two-year cancerversary, which is Monday, I have some news to share. Don’t worry – I remain cancer free!

As some of you may know, when I was diagnosed in September 2015, Julian and I had been planning to begin trying to expand our family the following summer. I would love to have a girl baby, but would equally love another boy – I just have a gut feeling that our family is not complete yet, that we are supposed to be a quintet.

I, like most other people, was not aware of the effect chemotherapy can have on a woman’s reproductive system, both during and after treatment, until I was diagnosed. That is when I discovered the cold, hard facts about the possible infertility chemotherapy can cause. Still, when my oncologist offered to refer me to a fertility specialist, I declined. Why? Many reasons. Specifically, I already had two beautiful children; I thought “seeing a fertility specialist” meant “freezing my eggs,” which frankly sounded like an awful procedure; and most importantly, I didn’t think infertility would happen to me.

Ridiculous, right? I was diagnosed with cancer at 37; the January before, I learned I’d had gall disease since I was a teenager. Why did I think anything that could happen wouldn’t happen to me? Maybe it’s because of those very things. Like, “Omg I have cancer as a 37 year old vegetarian who managed to bear two kids with only one fallopian tube. Of COURSE I’ll retain my fertility.” In addition, my oncologist put me on Lupron during chemo – a horrid drug that stops your ovaries from working, sending you directly into menopause, but has been shown to “sometimes” prevent infertility. How they determine that, I don’t know, since from what I have heard it’s basically a craps shoot whether you get your period back or not. But that’s not really the point.

Looking back, I wish I’d seen that fertility specialist. I wish I’d gotten all the information available to me. I wish my oncologist – who I love, don’t get me wrong – had said, “If you ever think you ever might possibly want to have another baby, just go see what the specialist has to say.” Because now I know there are other ways of preserving fertility – I read yesterday about a simple procedure where one ovary is removed and frozen, and then the outer layer – where the eggs are stored – is grafted back on to the remaining ovary, restoring fertility. Would I have done that? Yes. If I had a time machine, I’d go back and do it now. But alas, I was in denial. I thought I knew all the risks. I was both right and wrong.

Tired of my oncologist and my gyno both telling me I just had to “wait and see” what my body would do, I finally made an appointment at Seattle Reproductive Medicine (you know, like I should have done two years ago). A trans-vaginal ultrasound revealed my ovaries to be so small they were nearly undetectable. My uterus, while healthy, is a menopausal uterus – small, with a very thin tissue lining. A blood test measuring AMH came back so low that the doctor prefaced the result by telling J and I that it “couldn’t tell you the difference between low egg supply and zero,” but that mine was at the very lowest limit. She went on to tell me that’s not to say I couldn’t ever conceive, but the possibility is “remote.”

Why did “remote” hit me like a bucket of cold water? Low, small, even a percentage number – those I think I could have handled. But “remote” – remote is the snowy woodland where someone freezes to death because she lost her way hiking. Remote is where they used to send the very worst criminals to live and kill each other. Remote is so small it can’t even be quantified. Remote is not impossible, but it’s impossible’s next of kin.

I had previously asked J about adoption – which for some reason, he is not interested in – and between the ultrasound and the blood test I had even had a revelation that perhaps we could get an egg donor and a surrogate and have a baby that is at least a half sibling to our boys. So I had done a small amount of research into that, but even so – even so, I was hoping against hope they’d tell me my egg supply was lowered, but not – not that my chances were “remote.” I’ll be 40 next year – “remote” was already around the corner anyhow.

This was on Tuesday. I cried. A lot. I felt stupid, greedy, uninformed, angry, regretful, ungrateful, lost. For the last two days I have been processing. It’s still not real to me, if you can believe that – somehow, in my stubborn brain, remote is not far enough. I still feel this glimmer of hope. But my logical brain keeps trying to put that glimmer in check. And so I am struggling.

I haven’t told you everything yet, though. And I’m not sure if I should put it down, because we don’t know where we are with it. So take it as that, information, not opinion or decision. Just information we were given from a doctor, information that I will present to my oncologist at my regular appointment on Monday and ask his opinion of.

If they were to give me low levels of estrogen and progesterone – very low, the same my body would be making itself had my period come back – my uterus would rebound and begin working again as though my ovaries had not given up the ghost. Then, if we wanted, we could choose an egg donor, and I could actually carry the baby myself, nurse it myself. Genetically it would not be mine, but who’s to say how much DNA a baby picks up in the womb? Whose blood would be running through its veins? Whose heartbeat would it hear? Whose milk would it drink?

If you are by chance reading this, and you have been diagnosed, and you have not started treatment – even if you have children, even if you think you are done, even if you aren’t sure you ever want them – please go see a fertility specialist. Seeing them will do no harm. Know ALL your options. Regret is a horrible feeling to have after you’ve managed to survive a brush with death.

Missed Conceptions

Last month – May 9th, to be exact – I started spotting. It never got heavy, but it lasted for a full five days.

My oncologist said it was just my hormones trying to normalize. My gynecologist examined me and said there was nothing wrong and it could by my period or just hormonal spotting. Desperate to know if, after a year and a half, my body was finally normalizing, I took a digital ovulation test, which showed that yes, I was ovulating – on Julian’s birthday.

My “period” should have come back on or around the 4th – the 6th. I took several pregnancy tests, which all came back negative. On Conor’s third birthday, I took one that came back positive. Julian and I were both in shock, which, over the course of several days, morphed into excitement and joy.

Because my first pregnancy resulted in a ruptured tube, life-threatening internal bleeding, and emergency surgery, as soon as I discover I am pregnant I have to get two hCG tests two days apart. When a pregnancy is in the uterus, hCG levels roughly double every 48 hours. With ectopic pregnancies, hCG creeps up much more slowly. I had my hCG tested on Tuesday and it was very low, which was expected – I was only very newly pregnant. Yesterday, I inexplicably started getting a sinking feeling that I was not pregnant. Julian thought I was being crazy, but I felt sure there was some error – in spite of the positive home and blood tests – and I was not actually pregnant.

This morning I called to ask if that was possible, and the nurse called me back with my second hCG results. My hCG had stayed stable – not moved at all. She said that indicated that conception had occurred, but that for whatever reason, it had not developed or continued. She said I would get my period as normal, and could try again next month. I asked if there was any possibility that I was actually still menopausal, that perhaps it had been a false positive and I had never been pregnant at all. She said she didn’t think so, that menopause wouldn’t cause hCG to rise, and that very likely my body was ready and I should just keep trying.

I hung up with her and wept.

I have so many thoughts and they’re all jumbled so I’m just going to word vomit them here. I just had a miscarriage. I wonder if I conceived in the ruptured tube and then it traveled down and was not able to get to the uterus. Should we even try again? I’m kind of old. I thought this was a miracle. Is my body actually back to normal? I’m so fucking tired of wondering where I stand. Chemo really fucked me up. Why did we have to get that positive result? I could have just kept going along not knowing. This feels like a cruel prank. At least I can drink when I go visit my sister. Should I bother to ovulation test again? Will my period come again? When? Did I really know I wasn’t pregnant, or was that just fear talking? Being a woman is bloody impossible. Fuck you, cancer. Julian was so happy. I am so disappointed. I feel like a disappointment. I am both devastated and unsurprised. I knew it was too good to be true. I am surprised by how excited and thrilled I was. I am surprised I let myself get so invested so fast. I really don’t know if I can do this again.

Finally: I am strong, and I just need to pick myself up, dust myself off, and keep moving forward.

I’m okay!

Okay first a short bit of clarification.

It’s not like I am desperate to have a baby – that’s not what all the tears were about yesterday. I have two awesome babies – I am luckier than many! But we definitely were seriously considering another baby, and it just sucks to have that choice taken away. When my period came back that one time in June, I honestly thought, “Wait, maybe I don’t want another baby!” I just want to have the choice.

Much of the sadness/anger revolves around not the reproductive side of menopause, but the physical side. I have hot flashes constantly, and they’re miserable. They’re made worse by alcohol, so even a glass of wine can set them off. I have sore hips and a stiff back. My skin breaks out. I’m bloated and irritable. my hands are swollen and stiff every morning. I am forgetful. These are all menopause symptoms. I had hoped my hormone test would come back on the pre-menopausal side, so I could look forward to these annoyances tapering off. Instead, I’m still in the middle of menopause, which means I could be dealing with this stuff for a long time yet to come – years, even.

Anyhow, I talked to Dr. K last night and really there was nothing new – my numbers look bad for my period right now, but he says they can’t predict what will happen over the next four months (end of March is one year from the end of chemo). He says he has 75 year-old women with lower estradiol than mine, so it’s just a question mark right now. In three months he’ll test my blood again and see what the numbers are. Until then, I continue to wait.

But I’m okay. I’m great, actually. I have an amazing family and an awesome life and wonderful, supportive friends. And I’m alive and cancer free, so for now I’m just going to suck it up and deal with the little physical set backs and hope for better days ahead with regard to that!

Hormones and Grief (Video)

A 5-minute video about what’s going on with me. Apologize for the mood and for not just typing it instead – just don’t have it in me to type this up right now. If this doesn’t work, I also uploaded it as unlisted on YouTube: https://youtu.be/Ap5svJsM6V0

I also want to add that it’s not just the baby thing that is upsetting me. It’s all the physical ailments, which are being ascribed to “hormones,” and have no end in sight. It’s going through menopause before my time, before I’m even forty. It’s feeling cheated and old and helpless. It’s everything.

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.

After chemo.

Long time, no blog.

I have hair now. I’m doing well. Physically I am getting there – I have lost the chemo weight, so now just need to lose that additional 30 pounds. 🙂 I feel good although I still have some joint issues including tendonitis, and I might still have C Diff – need to get another kit to be sure (SO awesome).

The main issue now I would say is my brain. Chemo kinda wrecked it.

It’s getting better – I am not losing words as much as I used to. But nor am I pre-chemo Kate. I forget things – dates, appointments, plans. Just this morning Gregory had a 9:30 appointment to get his hearing checked which we barely made because for some reason I thought it was at 10:30. I used to handle everything for our vacations – from flights to rental cars to checking us in to getting us to the airport – and now I am lucky if I handle half of that correctly. I was obsessively early or on time before chemo, and now I am lucky if I remember to be where I need to be before it’s half an hour past the time I was supposed to be there. It’s embarrassing. I have a hundred things to do today and I just sat and stared at my computer trying to think of them and couldn’t. I have a list, of course, but at one time, I could have thought of half a dozen things before even looking at my list.

One of the frustrating things about this mental impairment is that people don’t know. Everyone expects you to be messed up during chemo, but after, everyone thinks you just recover and go back to yourself. And maybe, hopefully, I will. But it hasn’t happened yet.

When you prepare for chemotherapy, you know all the possible side effects. You know how long your treatment is going to last and what to expect while you’re going through it. You know you’ll be sick. You know things will suck. What you – or at least, what I – don’t (didn’t) realize is how long lasting the effects are. I didn’t anticipate joint pain, but I really didn’t anticipate loss of mental acuity. And other people don’t really realize it either. I look healthy, yes – but every day is a challenge.

That said – would I do it differently? No. Because although I am struggling daily with the little details of life, there are two things I am not struggling with: cancer, or the looming feeling that my cancer will return and kill me. I killed it. And I’m paying the price, but I feel like, in the end, it’s a small price to pay for my life and my sanity.

Doctor Blows the Whistle on Chemotherapy

I am here today to express frustration. I have discussed a similar frustration in a previous blog, but I want to touch on it again after seeing the video referenced in the title of this blog.

Some people prefer traditional medicine, and some people prefer naturopathy. I personally prefer integrative medicine, which is a marriage of the two. I saw a naturopath during my cancer treatment and took various natural supplements to help combat effects. I just finished a cleanse to help relieve pain in my joints. At the same time, as a depression sufferer, I know for a fact that chemicals can help me live a healthier, happier life.

I took all my medical decisions very seriously. I researched each one, spoke with multiple medical professionals, and took time to think about what I was doing and why. So it makes me incredibly, incredibly angry when propaganda like this makes it way into my Facebook newsfeed. If you don’t feel like watching it, I will summarize: A “doctor” by the name of Peter Glidden spends five minutes discussing the fact that chemotherapy does not work and is simply a money-generating scam for big pharma and oncologists.

As soon as I saw the title of the video, I was curious. By the time I was halfway through, I was enraged. I couldn’t even finish it, nor did I want to. I took to the web to find out more answers, and sure enough, found a thorough debunking of this doctor’s claims on Snopes. Turns out the good doctor has based all of his research and claims on research published by another doctor in the 1950s who conducted HIS research in the 1930s. If that doesn’t seem THAT long ago to you, I point you to this summary published by the NIH, where – on the first page – you can see that 5-year breast cancer survival has risen from 60% in the early 50s to over 90% in the late 90s. Chemotherapy testing began in the 40s, so draw your own conclusions about what has led to the astounding increase in survival.

All of that background is really beside the point, however. The point is this: When things like that are shared with me, it is equivalent to saying two things. One, I am a stupid and uninformed individual who simply allowed her healthcare decisions to be guided by whatever the doctors suggested, and two, that I just wasted 4 months of my life on something that will probably kill me, or at the very least, will not help me. In fact, based on Dr. Glidden’s assertions, I only have a 3% chance of survival now that I have had chemotherapy. Of course, MY doctor says I have an over 90% chance of survival, but surely he doesn’t have my best interests at heart. He became a doctor simply to make money – not because he cares about women’s health. Thank goodness I have people like Glidden looking out for me – and telling me that now that I’ve had chemo, I am basically almost certainly going to die.

If you think, for a second, that I did not come face to face with my own mortality the instant I heard the word “cancer” over the phone, you are badly mistaken. Likewise, if you think that I do not already know and think about the fact that cancer could come back anytime, anywhere, and kill me, you simply do not understand the psychological impact of cancer. After going through chemotherapy and radiation, being told by some quack, and by whoever chooses to spread his quackery, that I am going to die based on my own INFORMED, RESEARCHED, MEDICALLY SOUND health care decisions is at best insensitive and at worst cruel.

If you truly believe the out of date, fear-mongering information Dr. Glidden is spreading, that is your decision. But understand that cancer and chemotherapy are hard enough without being told you’re making or have made a mistake. And do some research of your own before spreading his misinformation to other people, people who might already be scared as hell as it is.