Happy three-year cancerversary to me! Three years ago today, I was told I had cancer. There was no paper trail to providing proof, no visible tumors on my skin or on a scan, no “you’ve been diagnosed with cancer certificate” (which I think you should be given), just the doctor’s word.
I was diagnosed with acute myeloid leukemia less than two weeks before Thanksgiving. In one sentence, in one breath, my life changed forever. On this very day three years ago, the bubbly blonde I once knew lost sight of her future, lost sight of who she was, and life’s been a bitch ever since. (Ok, ok, “mostly” a bitch. Is that better?)
What’s A Cancerversary?
Well to a lot of people, it’s the day they finished treatment. And, for others, it is the day of their diagnosis. It may be the day you lost a loved one. It is whatever you make it.
It’s a milestone we–cancer patients and survivors–celebrate, take note of or mark that’s significant through our lives as we navigate as cancer patients, and hopefully, to survivors.
It’s kind of a grim celebration when you think about it, or at least it is when you consider your cancerversary to be the day you learned you had cancer like I do.
That wasn’t exactly a fun day for me. It’s kind of stupid to celebrate quite possibly the worst day of my life.
I suppose if you thought of it as the day you learned you were sick so you could start treatment, beat cancer, and live life a full life–and leave cancer in the dust forever–it could be looked at as a happy celebration.
But I’m not exactly breaking out the balloons and cake just yet. Though, I might opt for some wine or hard alcohol later.
For some reason, as this year’s cancerversary approached, I felt guilty, nervous, and anxious. Guilty because so many friends I made over the past three years never made it this far. Hell, some never even made it to a stem cell transplant.
I think my anxiety stems from the looming month of November; for the past five years (even before cancer), this month has proven that it pretty much hates me.
Remember when Brody had a febrile seizure? Yeah, that was in November.
When Klay cut his thumb opening a present for Brody that sent us to ER, also November.
My first chemo treatment--November.
First sinus surgery and broken tailbone–November.
Learning I had cancer while pregnant with Bex… NO-FREAKING-VEMBER.
The Roughest Pregnancy Ever
It was November 13, 2014, I was 27 years old and lying in a hospital bed waiting to hear from my doctor. I wasn’t in the hospital for anything having to do with cancer or anything concerning it.
In fact, I was 29 weeks pregnant with my second child–our baby boy Beckham–and had experienced severe lower back spasms that lasted for an entire day the day before.
I was already having some other concerns with this pregnancy and was designated as a high-risk pregnancy pretty early on.
I had toxemia while pregnant with Brody (due to my chronic high blood pressure) and I had also learned I had a hormone deficiency in my placenta called PAPP-A.
Apparently, my PAPP-A level was significantly low, which meant as the baby got bigger as I progressed throughout my pregnancy, my placenta could weaken and could impact the baby’s growth. That meant we had to prepare for an early delivery. So, I was already having regular sonos with a high-risk OBGYN to ensure Bex was growing as he should.
And, I also had 23 FULL weeks of morning sickness (which was more like every-time-of-the-day sickness and was on blood pressure meds to keep my BP regulated.
My pregnancy with Bex was a challenging one, to say the least.
Beyond that, I was experiencing extreme exhaustion (and I shouldn’t have been since I was in my second trimester). I would hear my heartbeat in my ears from just standing and walking ten feet; it felt my heart was beating so fast, it felt like I’d just finished running a marathon.
Something was off in my body and I could tell.
So, my OB drew my blood at 24 weeks and said things didn’t look amazing, but she would check it again when I did my glucose test in a month. At 28 weeks, I finished the standard glucose test (drank that fun, sugary drink) YUCK! And, then I waited for the results.
A few days later–on the day of my baby shower–I got a phone call from my OB. It was Sunday, Nov. 9, and Klay, Brody, and I were literally walking out to the car when the phone rang.
The fact she was calling on a Sunday obviously wasn’t a good sign.
My doc told me my blood work came back and looked worse than before and she’d scheduled me an appointment for the next day with a hematologist at Texas Oncology.
She said oncology, I thought.
“Could this be cancer?” I asked immediately.
“Honestly, I don’t know. This is out of my realm of expertise,” she replied. She didn’t say ‘no’ either..
The very next day, my sister and I went to the oncology office and I had my blood drawn and looked at by a hematologist. The results came out fine–no cancer detected–but she wanted to monitor me over the next few weeks.
The night before my diagnosis, my OBGYN had kept me in the hospital; I’d gone into Labor & Delivery at the hospital to be looked over, run tests, get sonos etc. for my lower back spasms.
My cervix was closed so it wasn’t preterm labor, which was great news. Then the nurse in triage told me that my OB wanted me to stay overnight for observation–or so I thought. I’d stayed overnight in the hospital for observation before, so I was thinking she was just doing it as a precaution.
When we (mom, Brody, and I) finally got settled into my room on the high-risk floor, my doc walked in–at 7 at night–to tell me some news.
“I have some concerns I need to share with you, ” she said. “Your blood work has worsened, even from Monday. Reasons for this could be one of three things: the blood pressure meds you were on, but you’ve been off those for more than a week and nothing has changed. It could be the HELPP Syndrome, which is extremely bad toxemia. You would be showing signs of swelling and your BP would be rising and we aren’t seeing any signs of either of those.”
She took a deep breath, “Or it could be leukemia.”
That was the first time I’d heard it officially–that word.
And I knew in my gut, that’s what it was. My body knew it was coming and it was trying to tell me; I should have seen the signs.
They’d sent my blood off to a pathologist to take a look and we were told we should hear some news the next morning.
November 13, 2014 – My Cancerversary
It was a Thursday when I learned I was infected with cancer.
Acute Myeloid Leukemia was a term I’d never heard before; in fact, I had to ask my OBGYN to repeat it a few times because it sounded like a bunch of medical mumbo jumbo at first.
There were a few people in the room–Klay, my friend Patty, and my high-risk nurse Emily.
My mom, sister, and Brody were late to the
party announcement of my diagnosis. They actually had Jack In The Box in hand when they were told I had become the newest cancer patient in the hospital.
My doc informed us as much as she could and said they were assembling a team of experts–the Avengers (ha! I’m kidding)–to figure out our next move.
After my doctor left, we did what most people do when they find out they have cancer; we looked up the survival rate for those with AML via Google.
Honestly, that’s never a good thing to do. Hell, when I look up anything on WebMD, it always tells me I have like three minutes to live. Ok, not really, but it can scare the living shit out of anyone.
Since I had no knowledge of this disease and had much to learn (i.e. like there weren’t stages of AML like other cancers or that this type of cancer was found mostly in elderly people ages 60+), googling survival rates for AML patients confirmed what I already knew–that this disease would kill me.
To be fair, and to be his normal optimistic self, Klay pointed out the fact that I was young and pregnant put me in the super rare column and that most of these statistics were based on people over the age of 60, so the usual survival rates didn’t necessarily apply to my ‘age group’. And he also said they found it early because it wasn’t there on Monday and it now it was Thursday, so we caught it extremely early.
And well, if you have been reading my blog since the beginning you know the rest. If you’re new here, you can click here to go back to the beginning of my ‘cancer story’.
Cancer-Free With Some GVHD
I suppose this three-year mark since my diagnosis I should show some sort of excitement. It’s not that I’m not excited; I just didn’t know life after cancer would be so difficult.
My struggles with graft versus host disease (GVHD) have proven to be the most challenging part of the past three years.
I’ve suffered through the darkest depression and had serious thoughts of killing myself.
I’ve experienced unbearable physical pain through migraines, muscle GVHD, a gallbladder attack and removal, two sinus surgeries, the harshest chemotherapy given, a stem cell transplant, GVHD of the eye, joint and muscle function loss, two blood clots, pneumonia countless times and the list could go on and on.
I suppose we all thought being “cancer-free” would close this chapter of my life; except for having to check the “cancer” box on health forms from here on out.
Unfortunately, we were all very wrong.
Thinking back to that day–November 13–I can still replay the entire scene, see the hospital room, smell the hospital sheet (and Jack In The Box), and remember that I didn’t cry.
I can still feel my heart sinking into my stomach knowing that my fears had just been confirmed. I still see the significant moments I thought I’d miss with my kids flash before my eyes and leaving me with a dark hole that was now my future.
I can still feel the girl inside me that was naive and young that still believed the best of my life was yet to come.
She disappeared that day. She lost hope. She lost faith. She lost herself.
I became angry with the world. I became sad for my husband, Brody, and my unborn son. I felt guilty that I would leave this earth before my parents, my sister, and my grandparents. I’d always prepared to take care of them as they got older, not the other way around.
My body betrayed me. I never did anything to purposefully harm my body. I never smoked–cigs or pot–and while I did drink from time to time, it was rare for me to really drink and get drunk.
I thought I’d been pretty nice to my body for the most part and now it paid me back by mutating cells and pushing leukemic blasts throughout my bloodstream and ultimately trying to kill me.
Fuck you, body! You backstabbing bitch, I thought.
And just like that, in one moment, from one sentence, and with three fucking words, my body and I changed forever.
Celebrating This Cancerversary At The Hospital
It’s ironic like ray-e-yain on your wedding day, it’s a free ride when you’re already late (sorry having an Alanis Morrisette Moment)…
Anyway, let’s try this again; it’s ironic because today, of all days, I’m getting another port put in my chest.
Yep, another port is being put in. And, it’s giving me all the cancer feels I had the day I was diagnosed. It’s forcing me to feel anxious, nervous, and fearful like I was during all of the surgeries, the bone marrow biopsies, and the infusions…
Despite the fact that I do feel better than I have in months, and I have regained some motion back in my arms and shoulders through physical therapy, my oncologist wants to move forward with photopheresis.
Remember that word? Yeah, I was supposed to get a trifusion put in earlier this year and they were unable to put it in because I had a clot in my superior vena cava.
That day I was expecting to start a treatment that would clean my blood–and after several sessions–I’d hopefully start to feel better.
But my life is always a shit show and things never turn out how you think they will. I think God thinks I enjoy plot twists like I do cussing or wine.
No, God. I’ve had enough plot twists for now.
Let’s hope today’s procedure goes like it should and I can start photopheresis treatment TODAY without any hiccups or surprises.
So, here I am, on my three-year cancerversary, and celebrating by getting a port put in. Happy.
And, God when I say FML, I don’t mean it as a request. I should say lets UFML–un-fuck-my-life up this cancerversary.
Let’s just hope for a safe procedure and a propofal-filled morning.
I mean it is my cancerversary and all… so let’s give this cancerversary girl some good sleep to celebrate!
Go Shawty it’s my cancerversary,
PS. What do you consider your cancerversary? I want to know! How do you celebrate it? Or do you even celebrate it?
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