Monday, November 8, 2010

I have cancer.

I couldn't think of a better way to convey it. I have cancer. In one moment, everything changed. The way I see myself. The future, maybe without me in it. Terrifying? For some reason, not really. Maybe because I take care of patients with cancer nearly every day. Cancer seems familiar. But, then again, this is ME.

In August, I had the very sudden onset of pain just above my bladder while getting ready to leave work and change to go on a bike ride out to Micanopy and back along US 441 with some friends. I had my road bike in the back of the SUV. I just needed to top off my water bottles and change into my cycling clothes. But, the pain was like no pain I had ever had before. It hurt to stand or to walk. I debated going to the ER, and ended up ditching the bike ride and driving directly home from work instead. A few hours later, the pain in my belly, which had already lessened, changed. It moved, down to my lower right abdomen, where my appendix resides. I hurt with any movement, with coughing, turning, or just touching my abdomen. "Acute abdomen," I kept thinking. If I were at work, I'd had consulted a surgeon. Hmmm...peritonitis? Possible appendicitis?

At around 4 a.m., the pain was no worse, but its characteristics worried me, so off to the ER Andrew and I went. The diagnosis, after a CT: left ovarian cyst. I was discharged with some Vicodin for pain, and instructed to proceed directly to see my GYN for an ultrasound. The ultrasound showed a 2cm cyst. She recommended watchful waiting, with hope that it would go away on its own. Six weeks later, I came back for a repeat ultrasound, and it hadn't. It had grown, doubled in size. The word "cancer" was thrown around, along with "chemo," "possible colon resection," and other colorful and frightening terms involved with the treatment of advanced cancer within the pelvic organs. But, I was not afraid. I am healthy, I eat an almost completely vegetarian diet. I never smoked. I only see my doctor when I'm sick, and I haven't seen him in 7 years. I cycle miles and miles every week. Hell, I can ride my bike 100 miles in a day! I even rode a 200K brevet. I figured it couldn't be anything bad. I know the risk factors for ovarian cancer, and only one of them (never having been pregnant) even applies to me.

At my 6-week followup, during my repeat ultrasound, my GYN looked and looked with the ultrasound probe, from every angle, focused on evaluating the left side of my pelvis, and was silent. She kept on being silent while she tapped the "print" button on the monitor's keyboard repeatedly. Uh-oh, I thought, as pages and pages of images rolled off the printer. Pictures? Pictures is not good. Pictures means there's something. Pictures means someone else is going to be getting a phone call, a referral, a consultation for something BAD that can't be dealt with here.

Sure enough, pages of pictures of the BADNESS finally stopped printing and she looked up and spoke. Because I'm a nurse practitioner, the gravity of her words sank in quickly. Cancer. Surgery. Chemo. Urgent. Next week? Monday??

No, not Monday, I told her. I had a wedding to attend. After the wedding, maybe. A quick phone call consultation, and I suddenly had an appointment the next day to see a surgeon. Surgery? I'd never had surgery before in my life, at least not the kind requiring general anesthesia. Anesthesia...oh, great. Intubation. Lots of medications I've never had before. What if I have an adverse reaction?
I'm so healthy, so strong. I can't be sick. This can't be happening.

Next day, I met the surgeon, who was much calmer, and calming. She reassured me that many other things besides cancer can look like this mass. So now it's a "mass," not a cyst. The ovarian mass. Okay, the mass.
I cling to the truism: nothing is cancer until the pathology says it's cancer. For now, it's still a mass, or a cyst. I am suddenly reminded that, whenever I see a lung mass in a patient's chest x-ray, or read an endoscopy report that describes a fungating esophageal mass, I tend to think to myself: it's cancer until proven otherwise. Instead, now, I tell myself: it's benign until proven otherwise.

About a week and a half later, I have surgery. A 3-hour long procedure. Both ovaries, Fallopian tubes, and my uterus were removed. On my left ovary was the 4cm cyst, but also a tumor. A tumor. If I had been an observer in the OR, I am certain that I would have said, "oh, fuck." A frozen section (preliminary microscopic examination of the tissue) was done while I was still on the table, and was inconclusive, but suspicious for being malignant. Of course, I learned all of this after my surgery, when my surgeon spoke to me the following morning. She informed me that the tumor had penetrated the capsule that covers the outside of the ovary, and that the tumor had also been partially attached to my pelvic wall. I knew what that meant. Growing outside its boundaries, and growing into places where it's not meant to be, are both characteristics of cancer.

Before the surgery, my surgeon and I had talked about what-ifs. If she were to see any signs, any suspicion of cancer, she would take not only my uterus, tubes, and ovaries, but also additional specimens for staging. (Staging means taking lymph nodes and other nearby tissues, and examining the tissues under the microscope in order to determine whether cancer is present, to see whether a cancer has spread, or metastasized, beyond the main tumor). The presence of the tumor prompted her to perform the full staging procedure, and lymph nodes and other tissues and specimens were removed.

The surgery (robotically-assisted laparoscopic) went amazingly well. Six tiny incisions on my belly that completely healed in less than 2 weeks. I had minimal post-op pain, a little swelling, not much else. I was back at work less than 2 weeks later. See? I'm healthy. I'm strong. I have ridden a 200K brevet like it was nothing. I eat healthy. I don't smoke. How could I be sick? How the hell could I have cancer?

But, I do have cancer. Biopsy-proven, as we say. It's real. And, it's me. And, I am floored. The lymph nodes, and other specimens, fortunately were all negative. No evidence of any cancer in any of those tissues. So, only cancer in the ovary itself, the tumor. Together, this makes my cancer a Stage Ic ovarian cancer. I have cancer, and Stage Ic means I will need chemo, because some cancer cells could have escaped and been left behind. Left behind inside the pelvic cavity, they will find a place to implant and grow, as cancer does.

Stage Ic ovarian cancer is very rare. Not that ovarian cancer is rare. Ovarian cancer is not rare at all, it's just that early-stage ovarian cancer is rare. The more advanced (bigger or widespread) a cancer is when it's found, the higher the Stage it is assigned. And, ovarian cancer is most often discovered, in about 80% of cases, late. Late, as in beyond Stage II. At Stage III or IV, a woman's life expectancy is very short even with aggressive treatment: months, not years. It's a very bad, deadly cancer that affects a lot of women, most of whom never stand a chance because they don't know they have it. Its symptoms are vague, often ignored, and often misdiagnosed. So, I am, on the one hand, damned lucky. And, on the other hand, completely screwed because I HAVE OVARIAN CANCER.

Stage Ic ovarian cancer requires chemotherapy, and one thing I know because I take care of people who are on chemo is that chemotherapy sucks. Different chemo drugs suck in different ways. My chemo regimen sucks in a way that scares me because it threatens my future quality of life. It causes peripheral neuropathy (tingling, numbness, and pain in the fingers, hands, and feet), and it's sometimes permanent. There is nothing that can help prevent it, and about 30% of patients who get my chemo regimen will suffer some degree of peripheral neuropathy. But, I need to be able to type, to use a keyboard every day at my job. I am afraid that, if I can't type, I won't be able to work. If I can't feel my fingers and feet, how can I possibly ride my bike? Yeah, I know. If you're on the Titanic, why worry about rearranging the deck chairs? I should be happy that I was diagnosed early, and I am. Of course. But I still do not want numb hands and feet for the rest of my life.

I enjoy knitting, although I'm not very skilled at it. When I first learned that I would need chemo, and that I would lose my hair, I started knitting a simple rolled-brim hat, using soft cornflower blue yarn. I found a very basic pattern and have managed to teach myself how to knit "in the round," using circular needles. I hoped to complete the hat before my hair falls out. I thought I might, since I expected to start my chemo after Thanksgiving. But, after meeting my oncologist, the plan has now changed. After Thanksgiving, he said, would be "too late."

So instead I will start chemo on November 12th, which also happens to be my 48th birthday. Instead, I will use the 3 hours I spend in the chemo clinic to work on my hat. Maybe I'll finish it before my next cycle of chemo 3 weeks later,or before I finish chemo in 16 weeks!

My new oncologist seems okay. He tells me I will do fine. My surgeon told me that, too, and she was right, so I want to believe him. He answers most of my questions before I can ask them, and I like that. The others he answers to my satisfaction. He is sympathetic about my concerns, but honest. The neuropathy? It happens. Mostly, it's not that bad, but, yes, many people (about 30% who get my chemo regimen) do experience it. He seems like someone who wouldn't promise what he couldn't deliver. And, although my own experience tells me that there is no guarantee, he tells me that I will be cured. Yes, he said cured. I want to believe him. I want to be positive, and have hope, because I am, after all, one of the luckiest women ever to get diagnosed with ovarian cancer. I am Stage Ic. Ic, not III or IV. Did I, because I went to the Emergency Room, save my own life?

He listens to my concerns about wanting to avoid PEG-filgrastim (a bone marrow stimulating hormone injection given after every chemo dose, to help increase my white blood cell count), and he quietly tells me why my way (avoiding PEG-filgrastim) is not advisable. Without PEG-filgrastim, my white count will drop precipitously, and I will likely develop neutropenia (dangerously low white blood cell count that can lead to life-threatening infections). I feel ashamed that I have ordered PEG-filgrastim for dozens of my own patients to take after chemo, without much thought about the side effects it caused, the bone pain and aching muscles. I pretty quickly agree to take PEG-filgrastim and deal with it.

We talk a bit about the BRCA-1 and BRCA-2 gene mutations that are present in some women, that make them more likely to develop breast cancer. My oncologist asks whether I would like to be tested, since the BRCA genes are also associated with an increased incidence of ovarian cancer. I say no, I don't want to be tested. I would rather not know. I ask about estrogen replacement (which I was started on, right after my surgery), and he says, no. No? NO?? I'm wearing the damn patch! No. The patch must go. He says, "estrogen in a woman with ovarian cancer is like throwing gasoline on a fire." I get it. I agree to give up the patch. Later, after driving home, I cry at the thought of giving it up. Estrogen replacement was part of the deal when I signed up for this gig. You get my ovaries, I get the patch. No ovaries, no estrogen. No ovaries, and it's instant (surgical) menopause. With the ovaries removed, you go through menopause overnight. I had no idea how my body would react, and I did not really want to tempt fate to see whether I would have hot flashes, night sweats, and everything else that goes along with the abrupt removal of my female hormones. My surgeon was fine with hormone replacement therapy, and I got it. Now the oncologist is taking it away? Great. Not only do I get chemo, I get (maybe) hot flashes, too?

Chemo definitely sucks. No, it's cancer that sucks.
But, at this moment, less than 3 weeks after major surgery, I am back at work. I feel great. Better than great a lot of the time. I feel like me. My surgeon did an excellent, careful job, and removed the cancer from my body. Hopefully, but maybe not. Time will tell. Chemo can only help to kill off any residual cancer cells, after the chemo itself does a number on me, if it is going to do a number on me. Time will tell. At any rate, I now have cancer.
I don't have to be reminded of how lucky I am to be Stage Ic. Incredibly, undeniably lucky. In about 3 weeks, after my internal sutures heal fully, I will be able to ride the tandem again with Andrew. My life expectancy has, since my diagnosis, been discussed in terms of years, not weeks or months. I'm strong. I've been through worse than what chemo will do, and I know I will be okay.


2p said...

Oh My God. I am so sorry, Ally. I had no idea (I guess neither did you). I am glad you are able to listen to the doctors and understand what the hell they're saying, unlike most of us. :) I hope the chemo does its job and not much damage. I'll be thinking of you, and please update the blog so we can follow your recovery in between phone calls. Love you,

Lisa said...

I am so sorry to hear this and that you are having to go through all of this! It is hard on anyone, but "us" in the medical field, just know "too" much sometimes. But, at least you are well informed and can be a part of your treatment! I have several friends going through different types of cancer as we speak. Do you remember Juanesta from telemetry? She is going through the same thing~about a year now. I wish I knew what to say or do. Just know I am here, anytime you want to talk, vent, or talk medicine!! I will being thinking of you daily and sending all the positive vibes I can your way!! Stay strong, you can do this!!!

Anonymous said...

Wow! That was a lot to take in. I wondered when you were so quiet it there wasn't more going on, but I figured in time you would say something if it were. That is a whole lot to deal with in a short time. I do believe in the power of prayer though and you will be in mine (not sure if that will help or hurt you, lol.) You are one of the strongest people I know and I do know that even though this is hard to swallow you will be fine. Knowing to much is a good thing not bad. The hard part of that is the what if syndrome. You are prepared for those even if they never happen which they may not. You are healthy and strong and have done all the right things lifestyle wise. Those are a huge plus. Chemo might be hard, for my mom it wasn't but she had a different type. She did have the neutropenia (she has myelodysplasia) but that didn't seem to cause her much distress and she didn't get sick because of it. She wants to know little to nothing about what she has and I think that is what keeps her going. I truly have faith that you will be just fine.

gz said...

I wondered why your blog had gone quiet...
Thinking of you ((hug))

Think positive. Although with your knowledge that might not be so easy.
However you feel, let it out!

xx gz

jmyoho said...

Hi Ally-

I am sending prayers your way. I have been treating my breast cancer. I took chemo this summer, and it was a bummer! My hair is starting to grow back now, and I am feeling like myself again. Please let me know if you need anything- I am close by.

Judie said...

I feel that anything I say is trite and will not ease your worries. Please know that I am thinking of you. You are very gracious to share your thoughts about your cancer in a blog. Good luck with the chemotherapy.

Gail said...

I just stumbled across your blog and was blown away by your courage. I, too, am a nurse so I know how it must be to hear terms that you have heard applied to patients over the years, suddenly applied to you. Even tho, you don't know me, just know that you will be in my prayers and I will continue to follow your blog so that I can be there when you post the blog that says "I am cured"!! God bless you.