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.