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If Carmen San Diego and Where's Waldo ever got together, their offspring would probably just be completely invisible.

About Me

  • Member for 8 years 36 weeks
  • Last online 3 years 6 weeks ago
Tuesday, April 15, 2014

From Cancer Patient to Cancer Survivor

Beauty at the officeIn the weeks since my diagnosis, I have experienced every emotion possible as I grieved the health I thought I knew. I have scared myself thoughtless on Internet support boards designed to give me hope. I have pestered my oncology nurse on speed dial with every fear, hope, and question. I've spent hours on the phone with my aunt talking through next steps, even as her own husband suffered a small heart attack, a car crash, and they lost two baby calves. 

Only last May, I wrote about Angelina Jolie's choice to preemptively remove her breasts to prevent cancer. I said she was brave and smart to extend her life, knowing she carried the BRCA gene mutation that almost always leads to aggressive cancer. I said that no matter what they cut out of her, she was still her.

I didn't think I would be asked to swallow that pill for myself only 10 months later.

Tomorrow I have surgery to remove my early-stage cancer. If things go well and the pathology confirms that the disease has not spread, it should be the only treatment I have. 

While I certainly want this to be true, I know that in some ways, it can never be wholly true. I will be in treatment for this for the rest of my life.

My mind has been affected and there are dark spots in my brain now where I can't shut out the Cancer Thoughts: Will it come back? Will the virus that causes cervical cancer show up elsewhere? What can I do to protect myself?

My lifestyle has changed, and that's not a bad thing: I won't be able to party all the time, drink with abandon, eat whatever I want. Though I was on a holistic health path anyways, now every single thing I put in my mouth, on my skin, in my lungs matters so much more. My pantry becomes my pharmacy.

My immune system will need to be my best friend: While my oncologist treats the cancer cells and their effects, I now see a naturopath to help guide me on strengthening my immune system and my organs. I see a chiropractor to stimulate the nervous system and keep the lymphatic system optimized. I see a massage therapist for movement optimization, stress reduction, and natural pain management. I see a therapist to talk about how I feel, ways to cope, and she helps me tune in to how the feelings manifest in my body. I have seriously never felt healthier, which smacks of irony.Kriss Carr

I read books like Kris Carr's "Crazy Sexy Cancer Tips" to hear about other women throwing off the mantle of shame and desperation, coming out into the light of living. I want to learn how they still have fun — some of them still living with incurable Stage IV disease.

I pull oil, I sleep with a night mask, I meditate every day, I give thanks, I eat well, I walk, I look at everything around me, and I practice mindfulness in small ways every day.

I give better hugs. I pay attention when you talk to me. I seek to understand. I look for beauty.

In my last therapy session I talked about being defined by illness. My entire life I have been fighting back against some malady: scoliosis, Kawasaki disease, pneumonia, strep throat, thyroid and cervical cancer. This ends here. I don't want to be Amy, a Fighter. I want to be Amy, a Survivor.

My therapist said to me, "Look at yourself. You don't present as sick. Are you globally unhealthy? No. There is one small part of you that just needs help right now."

Last weekend I threw myself a party where I invited my Lady Pals to celebrate life, what they are thankful for, and to open up. I was astounded by how candid and frank everyone was, how they all participated, opened up, shared from the heart, and really helped me see what I am thankful for. Over wine, cheese, and albondigas we paid tribute to loss and embraced the future. We joked and we cried a little.

In my last oncology appointment, where I finally signed the surgical order to remove it all, including the ovaries, I asked the doctor, "Given the paperwork and what you see here on the pathology, if everything goes according to plan, what's the chance that this is a cure?"

Without hesitation he said, "98%."

98% chance of a cure. I straightened up my work desk last night, packed up my laptop, lined up my books. And just before I left for the night, not knowing when I will come back, I grabbed a pink post it and left a little note on my desk. What does it say?

<strong>See you soon. :)

A & D

Tagged with: Cervical Cancer
Wednesday, February 12, 2014

Oh wait...nope...we're sorry. It is cancer after all.

Monday was my first day at the new job. Then Monday night, my oncologist called with the results of my biopsy. There's good and bad news associated. 

The Bad:

I do not have pre-cancer. I have stage 1A2 adenocarcinoma of the cervix. The cancerous lesion measures 4 mm across and 4 mm deep. About the size of a standard pencil eraser. A small cancer. This is considered microinvasive. The treatment for stage 1A1 cancer would have been a simple hysterectomy. Instead I will require a radical one, though the surgeon won't be as radical as he would have with a stage 1B cancer. 

The Good:

This is treatable and even curable. The biopsy showed clear, or negative margins, meaning all the cancer was located in a single location. The surrounding vascular tissue and blood vessels are also free from cancer in the sample. I will not require chemotherapy or radiation at this time. There's a chance that MOST, if not ALL, of the cancer has already been removed.

The Ugly:

A case could be made for keeping my ovaries, which is important to quality of life and longevity, though standard practice is to remove them as this glandular cancer has been known to recur in those organs. For adenocarcinoma patients, that is a 5% risk. IF it moves into the ovaries, the outlook is very poor with only an 18% survival rate. Yuck.

That is relatively rare, but still a risk. My oncologist will present my pathology and results to a tumor board at my hospital to see if there's anecdotal evidence suggesting this would be a safe choice. The difference between taking them and leaving them is a matter of 1 mm of invasion. My cancer may not be very wide, but it's deeper than I would have liked to see.

I meet my doctor on Thursday to layout my treatment plan and settle on a surgery date. I need to heal for another 5 weeks from this biopsy so I am thinking April might be the right time.

So that's where I am. Going to attack full steam ahead. I'd like to keep my ovaries, but if losing them is truly the cure, I will do it. Guess I get to add another Cancer Ribbon to my wall.

Ladies, would you opt to keep your ovaries or just have them out? I am curious to see where people stand. I truly don't know the answer to this yet.

Thursday, February 6, 2014

Repeat after me...

Some people use mantras to help them get through tough times. Something like this popular Hawaiian one: "I love you, I’m sorry, Please forgive me, Thank You."  Or "Mediation is allowing what is." Or something as simple and helpful as the Sound of the Universe: "Om."

It's been four days since I had my surgical biopsy at Swedish. Make no mistake, this is just to determine what other surgery I will eventually need to have. Remember that my punch biopsy showed precancerous cells in three locations. 

I won't drag you through the process for a cone biopsy, but if scared ladies want to ask me privately, please reach out in the comments. I will share my story.

At this point, because of the extensive biopsy I had on Monday, I can no longer carry children. And that's OK.

How do I feel? No pain, no complications, no infection. I am a little unsteady on my feet still. My left wrist is sore from the IV. I can't lift anything heavier than 10 pounds. My body temperature is actually a little low. And my mind is spinning -- what will the pathology report show?

Results will be back in a week. Spin spin spin. So last night I called my doctor and he called me back.

He said the biopsy went well, and he wanted to check on me and see how I am doing. Wanted to know if I am still taking pain pills -- I am not, and never did. Wanted to make sure I am healing well. I am doing everything I can to heal well including eating very clean, getting lots of sleep, being mindful, and trying to stay positive. 

"During the biopsy," the doctor told me, "I saw no visible evidence of invasive disease. I did not see cancer."

What will the labs show? We don't know. But for now, as I rock myself to sleep, as I try to make peace in my mind, I chant my own mantra:

No visible evidence of disease.
No visible evidence of disease.
No visible evidence of disease.

And we wait.

Friday, January 31, 2014

The Path Back to Health

The past two weeks have not been easy.

Having gone from total hysterical breakdown prior to seeing the oncologist, to a determined early-stage fighter ready to do battle…

But then you found me at home, unemployed, and with The Internet, a powerful and dark, scary tool. I know that my diagnosis right now is pre-cancer, but on Monday I will have a surgical biopsy at Swedish to determine if there's anything more. With the cells they found, that's the case in about 20% of all patients.


Take that IF, and go to The Internet. Start looking at what can be after the IF and you will make yourself sick with worry. Take it all the way down the long road of what COULD BE and you encounter horrible words like invasive, complications, prolapsed organs, chemotherapy, and the holy mother of all things scary: Pelvic exenteration.

Don't look that up. You'll never sleep again. I'm not sleeping right now because of it.

And in the middle of this Crazy Cancerbrain thinking, what did I do? I went out and secured a dream job working for good people in a tech services firm in my husband's building. I start February 10th. I don't even know how I had the courage or stamina to do that, but I did.

So stress feeds cancer and I am stressed out. New job, unknown future. And according to my chiropractor, sugar feeds cancer. So I can't have sugar in any form (wheat, rice, corn, honey, bananas, liquor, etc.). Now the rigors of this diet adds additional stress.

Oh, and ladies? You want to drop weight quickly? Try the Pre-C Diet! Jesus, I am down almost 10 pounds since January 1st. 

My mother-in-law is going to read this and call me and scream at me. I know it. "Stay positive!" she says. 

Let me tell you right now: That's not easy. 

I know what I have to do. I have to take things one step at a time. I need to make a list of things I enjoy and then ENJOY THE HELL OUT OF THEM. Everything except sugar. Or liquor. Or honey.

My biopsy is on Monday. New job a week later. I am trying to hold on, but please understand if I am sad. I know what the many-branched treatment path looks like and I know I have to walk it. I don't know which trails I am going to need to take, yet.

Just please, hold my hand. 

I am terrified.

Wednesday, January 15, 2014

Hello, I have pre-cancer.

I've never been so scared in my whole life as I was yesterday morning.

Derreck and I met with the oncologist. I asked him to take notes because I couldn't focus. The night before found me alternating between a huddled, crying mess in the shower or pacing the house. I've lost six pounds in four days. I've barely left the house.

I am here to tell you, it's going to be OK in the end.

The oncologist sat us down and took out my biopsy results from January 2nd. Three positive results for Adenocarcinoma in situ. My referring doctor told me this was indicative of cancer. The oncologist explained: "This is not cancer. Not yet. It will become cancer if left untreated, and because it is glandular in nature, it has a higher risk of moving deeper into your reproductive system. So let's treat it."

Then we laid out a plan.

Adenocarcinoma is the more aggressive of the two common reproductive cancers, however "in situ" means it is appears isolated and has not spread. If the doctor were to assign a stage here it is Stage 0. He confirmed this through a microscopic exam. This is good.

The next step is to have a surgical outpatient biopsy in early February. It's scheduled. This will determine if all cells are just pre-cancer or if there is some microscopic invasive cancer inside my organs. Based on what can be seen now, there is no evidence of this, but the deep biopsy will give a better picture. Cancer can hide! Because I am not trying to save my fertility, the doctor will take a very large sample, possibly even removing all suspect cells.

Based on that pathology, there are two treatment paths:

  • All pre-cancer: I will proceed with a normal hysterectomy about six weeks later.
  • Microscopic cancer: I will proceed with a radical hysterectomy. 
  • If tumors are present, I will follow up with radiation and chemo.

In all scenarios the prognosis is good to very good, and I will lose my ability to have children. Adenocarcinoma has a tendency to come back in other reproductive organs, and I am not taking that chance. 

I have many advantages on my side: early detection, youth, strong supporters, and health insurance. I am looking for work, but I have the ability to relax and focus on my health for now. Which is probably smart. 

In the meantime, knowing that a hysterectomy can cause massive changes to a woman's body, I am looking for resources to help me understand what this will do to my skeletal structure, my hormones, my longevity. I need to get strong and stay healthy. Note to self: Take my vitamins.

Yes, my mind is overwhelmed with questions and I alternate between depression and relief, but I have a plan. We have a plan. Even in early invasive cancer stages, this is treatable. Even curable. I have to hold on to that for now.

PS: If you haven't heard Tig Notaro's "Hello, I Have Cancer" standup from LA, please listen to the whole thing. I listened to it twice in one day. It's poignant, raw, and funny in a sad way. She's a genius.

PSS: I didn't know what images to use to illustrate this story, so instead of something topical like a gross picture of a uterus, you get an unsettling picture of Mitt Romney with a tiny face, because, well, it's funny. Laughing is good for us.