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.

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.

Short but sweet!

37 when diagnosed and started chemo, 38 when completed chemo, told my chemopause could be permanent, would probably take at least 6 months to know –

My period came back today. 🙂 Weird thing to write about, I guess, but since we really felt robbed of making our own decision whether or not we wanted to try for another baby, this was a super important thing to both Julian and me. Additionally, it makes me feel really positive – my body is becoming mine again, and if I could recover so quickly from chemo, I must be pretty healthy! Other than this stupid cold I am now battling, which came hot on the heels of the stomach bug from last week. In spite of those, feeling pretty good – and this also explains last week’s depression.

Hurrah!

2nd to last! Come at me, bro!

So. Let’s see. Where to start.

First the bad: Pretty trivial, but I’m starting to get serious muscle soreness/fatigue. Started after I took Georgie for a long walk. The next day my muscles were quite sore, which I didn’t think much of… but they never stopped being sore. So for about a week and a half I’ve had post-workout muscle soreness. On top of that, things I normally do – charging up two flights of stairs, plopping down on the floor and jumping back up – have become very difficult for me. Essentially I feel like I am in the worst shape of my life – it’s given me a ton of empathy for people who are actually in bad shape, and a lot of gratitude for how I normally feel!

  
Now, the good: Second to last chemo, baby! I’ve made it through 4, five and six to go. So glad to be able to see the light at the end of the tunnel. After 6 I get a three-week break, then six weeks of radiation, five days a week. Not looking forward to that, but Dr. K says for about 2/3 of it I’ll feel pretty good – fatigue won’t hit till near the end. 

Today I asked him about having another baby, assuming I am fertile when this all ends. He said the good news is there will be no danger to me or the baby, and there is no evidence to suggest pregnancy or breastfeeding will cause the cancer to recur. I’ll also be getting checked very often – every 3 months for the first year or two years, I can’t remember, then less and less often. Mammograms only once a year – the three-month checkups will be just physicals and blood work. They can detect breast cancer in blood now! Not with 100% accuracy, but he thinks within the next 5 years things will be even farther along. When people talk about how breast cancer research has not brought about changes, I assume they must not know about amazing advances like this.

The bad news is he also told me he still strongly recommends hormone therapy. Aagagaggahhhhh I DON’T WANT HORMONE THERAPY. I told him I can’t do the Tamoxifen because of my antidepressants, and he said I could stay on Lupron – the drug that has been making me fat, bloated, and giving me new wrinkles and hot flashes/night sweats. Cue the tears and me saying, “I don’t want to be old before my time!” to which he immediately replied that this was MY choice, he will work with me on whatever I choose, and that the difference in survival rate numbers is only a few percentage points given my specific situation. He said let’s quit the Lupron after the next admin, see what happens with my period, get me through radiation, and then see how I’m feeling about it. This is why I have the most awesome oncologist in the world. I love this man like a relative. Seriously, Team Kaplan for the win.

So I cheered up and we came down for the chemo. Last week the place was so full and we waited SO long. This week we waited maybe five minutes and have an awesome chemo nurse, Lauren, whom I love.

Swedish (Hospital) chemo is not like other chemos, from what I have heard. We don’t have the chemo circle here – you’re always in a private cubicle (curtained off) or, less often, in a private room. I think prior to this we have had a private room once or twice. They’re way preferable because you can close the door, talk about whatever you want, watch TV or a movie without worrying about disturbing your neighbors, etc., but they are often filled up quickly for this very reason. 

Today, Lauren asked if we wanted a room and we said HECK YES! Turns out there were three rooms available and we got to choose so did we pick the one with the chair, the bed, and the ensuite bathroom??? YOU BET WE DID!

  
  

So, on a bad news/good news day, the good (as usual) is totally trumping the bad. Had a dream about my Dad last night and he was looking after me again. Grateful for everything, but especially for the support of all my awesome friends (like Mari, who will be joining us here in a bit) and my Mom (who gets here tomorrow night, WOO!!!)
Happy Wednesday!

UPDATE: I have found the fault with this room.

  
Someone has installed the toilet paper roll incorrectly, and I cannot fix it.