The Great Lesson of My Life

When I was a kid one of the best places in the world was my parent’s bed, especially when it was early in the morning and still warm from their body heat and the pillows still smelled of them- it felt like the safest place in the world. I think about being a kid a lot lately and how different it is now to be an adult. . . an adult who wants kids of her own. The urge to be a mom is strong in me and it rises up in my throat all the time. I try to swallow it down and wait.

Wait. Wait & see.

Yesterday I had my first pap smear appointment since my cancer surgeries this past summer. I had put off thinking about what it all meant up until this week when the anxiety set in. I mean, I was thinking about it but in that back-of-the-mind sort of way. I was a bundle of nerves walking into the doctor’s office and as I checked in at the desk I overheard the receptionist explain to another patient that my, apparently our, doctor was going to be on maternity leave. I tried to shake off my feelings. It’s not that I don’t like pregnant women- quite the contrary! I’m just so incredibly envious. And to face my visibly pregnant doctor who eradicated the cervical cancer growing inside of me and who just might deliver the news that we may or may not have the chance to have our own child was a bit much for me that morning when I was all jumbled up with my emotions. But she’s lovely and kind and we shared congratulations- her to me on my marriage, me to her on her pregnancy.

See? This is fine. It’s manageable. I can do this.

After the exam where she said everything looked good, we talked about what’s next. Within a week’s time we’ll have the results of the pap. We are hoping for normal test results to the pap and the HPV test. Apparently the surgeries could have rid me of HPV which I didn’t know was possible. If both tests come back normal we’ll likely get the go ahead to try to conceive. If one or both of the tests comes back abnormal, I’ll have to go back in for another colposcopy (where they look at the cells of my cervix with a microscope & swab anything suspicious) and we’ll see what they find.

All there is to do now is wait some more. Wait and worry. Wait and hope. Wait and wonder. I have never been more acutely aware that the great lesson of my life is patience. To lean into the waiting and the wanting and the wondering. To trust the process and let hope buoy me when I feel myself spiraling into what ifs and worry.

It’s such a strange experiences, to take a test that will direct the next move you make. That so much can weigh on what amounts to a small plastic cup filled with a modicum of your bodily fluid. For now I’m moving through the feelings, talking out our options with Mr. Darcy, researching OBGYN doctors, and taking my basal temperature. . . just in cases.

Maybe we’ll have a Christmas miracle?

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I have things to say and so I vlogged.

It’s Gynecological Cancer Awareness Month and I have a lot of things to say about that, as well as health care insurance, preventative care, HPV, and cervical cancer.

I say “pap” a lot in this video.

Thanks for watching.

I am Sizzle and I approve of this message.

(Apologies for the dark lighting and poor sound on this. I’m new to vlogging.)

(Also, gynecological is a hard word to say sometimes.)

The Doctor Called

On Friday I was convinced my doctor was going to call me with news from my surgery but Friday came and went with no call. And so I went into the weekend wondering about clear margins and my once intuitive gut being on the fritz.

But then Monday came and it was time for me to return to work. It was around lunchtime and the office was quiet as most were off eating in the sunshine. I was at my desk when the unknown number rang through. I answered it as I walked quickly to a vacant office, my heart in my throat.

My doctor was on the line with news of my fate.

She told me she had tried to call me Friday but she only had Mr. Darcy’s number on hand and didn’t feel she should leave a message on that line when he didn’t pick up the phone. (So my gut was right!) “I wanted to give you good news to go into your weekend,” she said. Good news??

I have clear margins. Wide, clear margins.

It’s what we were hoping for and yet it comes with its own complications. Yes, they did not find cancer in this biopsy. Instead this time they found spots of adenocarcinoma in situ (pre-cancer) which is what I had originally after my colposcopy. Then I had the first cold-knife conization and they found adenocarcinoma (actual cancer). Then I had this last surgery, the second cold-knife conization, and they found the pre-cancer again. Cancer is a tricky bitch.

So what does this mean? It means we’ve bought some time and the possibility that we could conceive our own child is back in the mix. I have to go back in a month for a post-op check up then have a pap smear in 3 months to make sure it’s clear. If it is not abnormal, I will get the go-ahead to try to get pregnant. I’m not sure how I can have a normal pap after all this and with the news that there is still pre-cancer in my cervix. But apparently that’s what we’re hoping for. . .

I’m sorry. I know I should be rejoicing but I’m too pragmatic to ignore the hurdles ahead. I’ve had two surgeries on my cervix which will make conceiving more difficult and giving birth even harder. I’ve been tensely holding my breath for months now, living amidst the cancer chaos, and hearing “clear margins” isn’t actually releasing my anxiety. I know this is good news in long line of bad news and I’ll take what I can get. But even if we do get to have a kid, I’ll still have to have a hysterectomy. The only cure for cervical cancer is to cut out all the lady parts. What clear margins gives me is a greater opportunity, a chance to try to have a baby with Mr. Darcy, and a bit of breathing room until the inevitable (hysterectomy).

This was not what we had planned. I didn’t think we’d get engaged, buy a house, move, Mr. Darcy would start a new job, I would get cervical cancer, we’d get married, and we’d try to get pregnant all in one year.  I LIKE TO BE EFFICIENT BUT THIS IS KIND OF RIDICULOUS.

I am tired, friends. These past few months have aged us. I see the gray hair accumulating on Mr. Darcy’s head. I see how the worry has set up camp in my eyes. But we will take this good news and rest in it while focusing on our upcoming wedding. I have been confronted with so many lessons in all of this, many I am still unraveling. I know, without a doubt, that I have a sea of love carrying me. That I am not alone. That I am blessed beyond my wildest dreams with love and support and kindness. (Thank you.)

Now We Wait Some More

For those of you who don’t follow me on Twitter or Facebook, I’m alive! I made it through the second surgery and am at home taking it easy, eating too many donuts, reading trashy magazines, and napping.

As for the surgery – most of the pre-op was the same except that I was on a different floor and everything seemed more chaotic. The check in nurse was a bit scattered. The woman who came from the lab to draw my blood was terrible at her job (as evidenced by her first draw attempt spewing blood and her second try leaving me with a very dark purple half-dollar sized bruise). Instead of having me sit in a recliner chair as they got my IV prepped, they had me lie down on a gurney under this blow up warm blanket. It was the strangest thing- hooked up to a vent that blew hot air into this inflatable “blanket” made of some sort of plastic. It was warm, for sure, but it also was kind of strange.

I only cried once or twice mostly when someone would learn we were planning our upcoming wedding and would say something nice about it. I just so much want to be past all this cancer and subsequent infertility business so I can focus on marrying Mr. Darcy. But this is our current reality and we’re facing it hand in hand. I am very, very lucky to have him with me every step of the way.

I met with my gyno-oncologist who at first glance reminded me so much of my previous doctor that I had to do a double take. Both of my gynecologists are thin, direct-talking, redheads. She sat with us and we went over everything. She was cautiously optimistic given the CT results. The anesthesiologist came over and was very kind and totally on board with the positive thinking/talk in the operating room. The nurse came by to wheel me int the cold operating room and they quickly got me settled. As the anesthesiologist gave me the drugs, she told me to focus on the positive thoughts and good outcomes and as I did, I went under. Next thing I knew I was waking up surrounded by new nurses who gave me ice chips. I probably woke up about 10-15 minutes after my surgery was over.

They wheeled me to the post-op recovery area where a new nurse met me. She had the same name as what Mr. Darcy and I would name a daughter if we were lucky enough to have one. A sign? Maybe. Depends on if you believe in that sort of thing I guess. After eating a little something and drinking some juice in the post-op area, they let me go home. After getting some donuts (required for recovery), we were home around 11am. I’m feeling mild discomfort- sore back and cramping, dry throat, very tired- but for the most part it is just like a bad period (which I was suffering from the 3 days before surgery so it’s sort of like more of the same).

I asked my doctor to call me if she gets the results earlier than next Thursday (a week from today) when we have a post-op check up scheduled. “Whether they are bad or good?” she asked. “Yes,” I replied. Because I want to know either way. Regardless of the outcome, I’ll face it with Mr. Darcy and all my friends and family standing beside me.

But please oh please oh please, let it be clear margins.

Surgery, Take 2

Tomorrow at this time I will be knocked out in the operating room while my doctor performs a second cold-knife conization on my cervix.

I’ll have woken up at 4:30am to take a shower and attempt to meditate while Mr. Darcy takes a shower to wake up . By 5:15 we will be out the door and on our way to the hospital where they will ask me my name and date of birth over and over, I’ll put on a fancy blue gown, and try not to pass out when they put the IV in my wrist. I’ll wait in a room with other patients, holding Mr. Darcy’s hand until the moment they tell me it’s time to let go.

I am not feeling the extreme anxiety I felt before the last surgery. So much was new and unknown six weeks ago. When I walked into that operating room, I didn’t think I’d later hear they found cancer. Now I know there is cancer and I’m hoping later I’ll hear they cut all the cancer out (clear margins!). If these past few months have reminded me of anything, it’s that even when you think you know, you don’t. I’ve been trying to make my peace with that as well as let myself feel hope.

Even though I’m not as afraid as last time, I’ve still got plenty of anxiety, worry, and fear. Mostly I’ve distracted myself these past few weeks with work, house, and wedding stuff. I could tell I was not really present, not really letting myself feel the feelings associated with the cancer. I’d joke about it. Make other people feel okay when they heard about it. Refer to it as “a little bit of cancer” and around the office we nicknamed my cervix since she’s the topic of many conversations. I haven’t meditated nearly as much as I should have even though my room is all set up for it. I think I have been too afraid to feel all the feelings because then I’d crumble.

I am scared about tomorrow but not in a debilitating way. I’m going to the same hospital which helps me feel more at ease. They give excellent care. I can’t say I am looking forward to the surgery but rather, getting through it so that then I can heal and prepare myself to hear the news from the biopsy. I’d much rather none of this was happening so I could focus on being a carefree bride or maybe obsess over my weight some more (which is one of the things I’ve let go of in all this cancer stuff- it was reprioritized to “not a priority”). There are so many things I’d rather be giving my attention to than the pesky cancer in my cervix. But this is my reality and I’ve got to be in it. Everything is always shifting.

You guys have already been so wonderful with all your sweet support. Thank you! If you think of it tomorrow, could send me good vibes, thoughts, prayers? That would be much appreciated. I’ll be in surgery around 7:40am -8:40am, then in recovery for a bit before Mr. Darcy takes me home.

Here’s to love, light, and clear margins, my friends.

“You cannot find peace by avoiding life.” – Virginia Woolf, “The Hours”

Trying Hope & Worthiness On For Size

Sometimes I forget I have cancer. Like, hours will go by and I didn’t think about it. Those hours are a liberating while they exist but when I remember, I feel a metaphoric gut punch.

So that’s probably why I’ve been operating in a closed off mindset this past week. I’m not really allowing myself to feel anything about my cancer or my upcoming surgery. I’m on auto-pilot. It’s almost like I’ve settled into this new normal in which I am a person who has cancer. It’s still weird to say, “I have cancer.” It feels a little like cheating because I’m not sick outwardly. I don’t feel like I deserve to go around claiming it when there are people hooked up to chemo, losing their hair, battling fatigue and puking and not being able to work or play with their kids. I know I said we shouldn’t compare our worst things and here I am doing just that. I never said I wasn’t a hypocrite.

The surgery next Wednesday isn’t scaring me like last time probably because it’s a known thing to me now. I know where to go, what to expect, trust the hospital to deliver great care, and understand the process. I wouldn’t say I am looking forward to it but more that I want to move through this next part of surgery and recovery to get to the results part. As much as I am terrified of what the results will be, I have to face it.

But still, I’m having trouble really feeling hopeful. I feel like saying that out loud is a total jinx but it’s my current truth. I learned growing up that hoping just got you hurt. I’m trying to learn that you can hope and still get disappointing news and that doesn’t mean the hoping was hopeless. Does that make sense? Hope is a powerful tool to keep ones spirits afloat. It gives lightness to a heavy thing. It’s important to have, especially when shitty things are happening but the hardest to grasp when you’re in the muck of all the shit. I’m working on this daily though I don’t know if I’ll ever be “good” at it.

Another thing I’m not sure I’ll ever be “good” at is fully grasping that I matter to people just by being me. Take a look at this:

Cards of love and encouragement.

These cards that hang in my meditation room are a constant reminder that people care about me. Each one lifts my spirits and makes me pause to consider how I’ve been living under false assumptions.

In therapy, I work a lot on my sense of self-worth. I’ve operated under the notion that I had to do certain things or behave in particular ways, and hell, even look certain ways (thin) to be worthwhile. I’ve struggle with feeling worthy of love pretty much my entire life. And then the doctor finds some cancer in my cervix and WHAM! I’m flooded with love from friends near and far, friends that I only known through the internet, old friends I haven’t spoken to since elementary or high school who somehow remember me so clearly and so fondly – all which forces me to look at myself in a new way.

Sometimes I feel like Stuart Smalley with my “gosh darn it people like me!” realization. Other times I joke that this must be what attending your own funeral is like. I know it’s morbid but seriously, when else do you get to receive this kind of outpouring of love? It’s bigger and deeper than any birthday celebration.

I’m trying to digest all this. That I do impact people in a positive way. That I do matter to people (some of whom I’ve never met in person). That I am important in this world just by being little old me. I hate that I had to get cervical cancer to learn some of these important life lessons but I’m grateful nonetheless to be able to see myself and the world with new eyes and a more open heart.

I will always have fears, but I need not be my fear, for I have other places within myself from which to speak and act. -Parker J. Palmer

Letting the Light In

There is a crack in everything/That’s how the light gets in.

– “Anthem” by Leonard Cohen

I had a CT scan last Wednesday. I’d never had anything like it before but it turned out to be not that bad. You basically get into terrible hospital garments and sit in this chair with an IV (that’s not hooked up to fluids) while chugging a thick milk-like drink. When I sat down, I asked the tech, “Oh is this milk?” to which he replied with a chuckle, “Oh no, honey.” I took a sip and didn’t think it was that bad. But it was a BIG cup and despite trying to convince myself it was a milkshake, I did have to gag it down by the last few sips. The more you drink, the better your scan will be. I certainly didn’t want to jeopardize the scan so I drank every last gross drop.

After about 20 minutes of sitting there flipping through trashy magazines they took me into a room with the donut. That’s what I was calling it (the CT machine) because it looks just like a donut and referring to it as a donut made the whole procedure light-hearted for me. I’m going through the donut! Wheeee!

The machine tells you to hold your breath and let it out intermittently as it moves you on this conveyor belt contraption in and out of the donut. When the tech hooked my IV up to the dye he told me I’d feel warmth spreading through my body, like a wetness,  and it’d feel like I’d peed myself but I wouldn’t actually have. The sensation should only last a minute. Right as he was telling me it was going to feel wet, the connection at my IV site spewed out onto my head and arm. For a second I was like “wow this really feels wet” until I realized it was ACTUAL wetness. A comedy of errors follows me wherever I go.

I was in and out of there within 45 minutes. Afterwards, I treated myself to a donut, obviously. My nervousness kicked in after the scan was over because I knew I’d have to wait to get the results. More waiting! When I didn’t hear on Thursday I called my doctor’s nurse to see if they’d gotten the scan. She told me that they did have them but that the doctor might not be free to call me until Monday. More waiting! But not two hours later I got a call from my doctor (on her day off!) who told me she had reviewed the scan and it was good news: there was no evidence of the cancer spreading.

HALLELUJAH!

I seriously smiled the biggest smile and hugged any co-worker near me after that call. When I called Mr. Darcy to tell him, I could hear the relief in his voice. Finally! A little lightness! After I tweeted and Facebooked about it, my phone was blowing up with gleeful responses. You guys seriously are the best cheering squad ever. (Thank you!)

A lot of folks have asked what does this mean. While this is good news just like the fact that the cancer is not in my lymph nodes and isn’t presenting in my uterus, I still have to have surgery on the 5th because there still is cancer in my cervix. The clear scan means it’s probably isolated to that area. The best case scenario is this surgery will cut the rest of the cancer out. We really won’t know until after the surgery when the results come back which could take over a week. But what’s more waiting? I’m getting better with the waiting. I still don’t like it but I can endure it.

For now I’m letting myself bask in a glimmer of lightness for the first time in weeks. To some of you this is old news if you follow me on Twitter or Facebook but I wanted to document this important juncture in the cancer journey and also let anyone who might be needing a CT that they aren’t that bad, especially if you call it “a donut” and treat yourself to one afterwards. Trying to convince yourself the viscous drink is a milkshake will probably not work though.

An honest answer to the question, “How are you?”

“Please remember, it is what you are that heals, not what you know.” -Carl Jung

Most days I’m wearing my brave face. I’ll banter and laugh, listen to your stories, go to work, and when someone asks me how I am I’ll respond with “hanging in there.” And for the most part I am keeping it together because what else is there for me to do? Life goes on for me and everyone else around me. It’s difficult most days to walk around in the world knowing that something as terrible as cancer is inside me. In small pockets, I forget and it’s a jolt when I remember- “oh yeah, I have cancer!”

I’m sick but I’m not sick. I was just going about my usual life, getting my annual pap smear, when wham! the doctor found cancer. I didn’t and don’t feel sick. I had and haven’t had any symptoms attributed to cervical cancer. It’s terrifying to realize you can be walking around thinking you’re all healthy with your paleo diet, your yoga and dancing, your vitamins, and your therapy. . . and you’re not. I’m struggling with not letting this little bit of cancer change my view of myself in a negative way. I’m having a very difficult time not giving into hopelessness and fear. If I didn’t even know I had cancer before and now I do, how can I know that there isn’t more cancer? How can I not wonder if every pang or sensation is cancer spreading through my body?

I know. I know. That kind of blown-out-of-proportion type of thinking will only get me panic attacks, acne, and bags under my eyes. For all my brave facing, there are nights when it all crumbles and I lose myself to despair and fear and sorrow. I cry and get mad. I want to just be a bride! Not a bride worried about stupid cancer! It’s not fair, I wail. This sucks, I bemoan. I wish this wasn’t happening, I cry. I’m forced to be vulnerable and cracked open and raw. I don’t like it but I’m getting more accustomed to it even if I find it utterly exhausting.

This is not the worst thing that could happen to a person. Worse things are happening to wonderful people all over the world right this minute. It’s just that this is my worst thing. It’s the scariest, shittiest thing that’s ever happened to me in my life. It rivals my father’s death when I was 19 which, twenty years later, I’m just finding some peace with.

When things like this happen to you, you don’t come out unscathed or unchanged. The world does not look the same to me already and I’m only at the start of the journey. There is a blessing in all of this, I know. Many blessings. But as much as I like to be positive, I’m also a realist. And this shit sucks you guys. That’s it in a poignant nutshell.

Next Steps, More Hope

We walked into the gyno oncologist’s office yesterday and Ray LaMontagne’s “Trouble” was playing. I passed over my new patient forms and insurance card. While I paid my co-pay, “Let It Be” started playing.

Really Universe? Okay.

The doctor reviewed the pathology report in depth. We spent over an hour with her asking all our questions, jotting down notes, going through different scenarios.

It basically boils down to this:

There is more cancer inside of me. We know this because there were no clear margins from the tissue removed during the cold-knife conization surgery. Clear margins means there is like a ring around the sample that shows no cancer or pre-cancer. Kind of like if my cancer was a castle the clear margins would be a moat. My sample had cancer all the way up to the edge. The cancerous part measures about 2 millimeters. We don’t know how much more is in there so we have to do another conization surgery. This time the doctor will cut up into my cervix in a more narrow, pointed cone shape since that’s where the cancer is showing up.

Good news: no cancer presents in my lymph nodes or my uterus, what they found is small (2 millimeters), and it was caught early.

Best case scenario is that after I have the second cone, the results will show clear margins meaning they cut the cancer out of me. This type of cancer I have, adenocarcinoma, is less common and so they don’t know much about how it operates unfortunately. It’s pretty disturbing that I could have only 2 abnormal paps and that the colposcopy didn’t show any cancer but that it took a conization for it to show up.

I’ll tell you this much: “clear margins” is my new mantra.

(Please, please, please let me get what I want this time.)

The option between the cone and the hysterectomy would be a trachelectomy (where they remove my cervix only). Very few doctors do this surgery but this doctor’s colleague does which makes me feel better. I’d rather have someone within reach if it comes to that.

Mr. Darcy and I feel . . . better. I certainly left there feeling like I could breathe a little easier than I had the past few weeks. I do better with a plan. And it helped to hear that it was caught early and it’s small even if I was told that originally. In this past week of fear and worry, I’ve lost sight of it. While I would much rather not have cancer at all, I’m grateful I have a fighting chance. There’s a glimmer of hope that this could be the last surgery I’d need and if that’s the case, maybe we might be able to conceive. I can tell you this much- no patient should be told she has cancer and then have to wait a week to talk to someone who can actually explain what was found. It is pure torture!

We have scheduled my second surgery for September 5th. I can’t have it any earlier because I have to wait 6 weeks from my last cone so that my cervix can heal. After that surgery we’ll wait a week for the results just like last time. Between now and then, I’m just going to focus on hopeful, happy thoughts like all the love in my life, my amazing fiance, my awesome network of support, my wonderful family, and my fantastic friends. Because if this cancer has shown me anything so far it’s that I am blessed. So very blessed.

So there is more fight to fight, more road to travel, but we’re readying ourselves for what lies ahead. Thank you for being along on the journey with us. Your support has buoyed us in this time of trouble.

 

Facing The Lion

“Plans are useless, but planning is invaluable.” -Winston Churchill

As someone who has made her living out of planning every last detail, in the past few weeks I’ve never been more aware of how little is within my ability to control in this life. It seems that shouting, “I have a plan!” is just the cue the Universe needs to pull the rug out from under you. I’m swallowing the fact that there is no way to plan yourself into safety. I’ve always feared the unknown but now I’m forced to make friends with it.

In my plan for my life right now I’d be working on the details of our October wedding not calling doctors offices to get appointments or answers. On Sunday we went to pick out tuxes for Mr. Darcy and Finn. I struggled to be in the moment and feel happy as we discussed what color bow ties to choose. And since we went with the dark teal and the vest which were Mr. Darcy’s choices, I think I acquiesce easier nowadays. (Mr. Darcy might beg to differ.) Later, I stood in my wedding dress for an hour and a half  during my alterations appointment trying to think about our wedding day and not my upcoming gyno oncologist appointment (or about passing out because, damn, it was hot in there).

I go to work, albeit, not always on time and sometimes when a doctor’s office calls I have to run around the office looking for a room with a door so I can talk privately about my cervix, viscosity of blood, the cancer. People seem surprised I’m working. What else would I do? Sitting around alone at home is not good for me. Life continues on and fuck if I am going to hide from it.

Friends worry about burdening me with their own troubles. I say BRING IT because I need to think of something other than this stupid cancer and what looms ahead. I need to support you too and show you I love you back with my caring. Besides, my cancer does not trump someone else’s sorrows or worries. We all have our troubles and heartaches. You tell me yours; I’ll tell you mine. This is not a contest of woes. If it is, for the first time in my life, I want to lose something.

Today at 1pm I have my first gyno oncologist appointment. Mr. Darcy is going with me and I’m bringing along my notebook of questions. I have no idea what the doctor will tell us. Right now when I picture it, it feels like standing in front of a loaded gun. (I need better imagery.) My hope is that the appointment gives us some options for next steps and some clarity about my condition. I’ve always been the type of person who would rather know the whole, hard truth than have potentially hurtful things glossed over for the sake of protecting me. I am tired of sitting idle with my fears. I am a person who takes action and all this sitting around just waiting is pissing me off.

As much as I can, I’m readying myself for the new information. I am prepared leave my armor at the door and to walk further into the unknown.