Monday, November 22, 2010

Giving thanks. Goodbye, hair.



Our Thanksgiving was a very good one. Andrew and I visited my sister on the east coast of Florida, and had a cozy dinner with her family. I was delighted to be able to taste most of what I ate, since altered taste sensation is one of the more annoying side effects of my chemo regimen. For about one week, I was unable to taste salt. Not even V-8 juice or dill pickles tasted salty. At the same time, sugary foods tasted super-sweet. Fortunately, that effect had mostly resolved by Turkey Day. We had an abundance of food: shrimp cocktail and baked brie to start, followed by the full turkey dinner with sweet potato casserole, pole beans cooked just right, and corn pudding that we brought. Mmm, corn pudding. Well, it was all good.Between us, we compiled at least 6 different desserts. We finished dinner, sat around chatting while we let our food digest, and then went for a cruise on their pontoon boat to see Mosquito Lagoon and the beautiful sunset.


Relaxation, good food, and the company, love, and support of my husband and family. Talk about thankful.


And, thankfully, by Thanksgiving a lot of the chemo unpleasantness had passed. There were 2 days where I had absolutely no appetite, and found it hard even to drink water just to stay hydrated. My appetite improved, but the altered sense of taste made some foods unappealing. But, other foods, like oatmeal, yogurt, grapefruit and fresh pineapple always tasted good. Then there was the chemo fog. The chemo fog lasted about the first 8 days. How to describe the fog? I can't really describe it except to say it was a funk, almost an out-of-body feeling. The fog hung around, even when other symptoms were not bad. As for the neuropathy, whatever symptoms I had (tingling in my fingers, heaviness in my feet, and, once, a shooting electrical pain across my face that lasted for about 2 hours) were transient, and are now all gone. Weird! I had exactly 2 episodes of nausea. I never threw up. Not bad for somebody who hates to throw up. I took my anti-nausea medications, and that went away, too. Aches and pains came and went. I gobbled ibuprofen round-the-clock some days. The pegfilgrastim injection 3 days after chemo gave me those dreaded "flu-like symptoms," as expected, but even that was manageable with more ibuprofen. I was able to work every day. Not a day missed, except for the day of my infusion. Incredible. Bottom line is: the chemo made me feel pretty lousy some days, but not so lousy that I wouldn't do it again. One cycle down, 5 to go.


I did have one minor chemo-related complication, a skin infection called cellulitis. A few days after my first chemo, I noticed a painful dime-sized abrasion on my elbow. Only I had not injured myself. I ignored it, and just put some Neosporin and a Band-Aid on it. After 2 days, it had not gotten any better. By 3 days, it was getting worse, and seemed to be spreading outward in an expanding circle. I was concerned, but didn't seek my doctor's advice. The last straw was coming home from work one day, with my elbow aching, and peeling off the bandage to reveal a black crater surrounded by angry red infected skin. Oh, crap. Cellulitis. Of course, this revelation occurred at 6 p.m. By then, I didn't think it would be wise to wait until morning, at which point I imagined needing to come to the Emergency Room to be admitted to the hospital for IV antibiotics. So, I call my oncologist's office, left a message with the answering service, and got a call back. My regular oncologist was out of town, but his partner was great. My chemo home pharmacy includes a supply of "as-needed" antibiotic (ciprofloxacin) to be used in case of a chemo-related fever or infection. We both agreed that Cipro isn't the best antibiotic choice for what was probably a Staph infection. I took one, anyway. Next morning, I saw him at his office, and a more effective antibiotic, a sulfa drug, was prescribed. It's been about 6 days on the new antibiotic, and my elbow looks much better. Lesson learned: don't ignore bad stuff from now on. I knew better. I know better. It won't happen again.


The weekend after Thanksgiving, we hiked 8.5 miles at the Goethe State Forest. This was important to me, since I haven't been cycling since my surgery, due to activity restrictions aimed at allowing internal sutures to heal. My 6 week post-op recheck is tomorrow, and I'm expecting to be given the okay to go back to doing anything I want.


We saw the biggest living Bald Cypress tree in Florida, the Goethe Giant. Andrew is looking up at it. All 105 feet of it. It's about 10 feet in diameter, and around 900 years old! I was tired after the long hike, but being outdoors and the gorgeous day were just perfect.




The oncologist told me that I would lose my hair "3 weeks, almost exactly to the day" after my first chemo. Only, he was wrong. Unless, of course, what he meant was that I would finish losing all of my hair at about Day 21. Because, today is only Day 18, and this morning my hair started to fall out! I knew this would happen, but seeing 6, 7, 8 strands of hair come out in my hand with each pass still came as a shock. I had actually gotten my already short hair cut even shorter on Saturday. It's now a pixie-like and very cute 'do. Not wanting to shed everywhere, I wore a pretty scarf over my hair at work today, to prevent fallout. People at the hospital who know about my cancer smiled and nodded. Those who don't yet know looked at me curiously. Thanks to wonderful friends, I have soft, cuddly blankets to snuggle up with in my chemo chair or at home. And, I have a growing collection of stylish hats and scarves. Thankful? Oh, yeah.

Saturday, November 13, 2010

First cycle of chemo is behind me, and we visit the bison on Paynes Prairie.



Yesterday, I had my first cycle of chemo. Carboplatin and taxotere. My first time ever being the one sitting in the chemo chair, rather than addressing someone else who was sitting in it. For some reason, it took 3 sticks to get my IV started. Strange, because I think of myself as having what nurses refer to as "good veins." Three sticks and 2 nurses later, the IV was in. But, it was just a tiny 22-gauge catheter, and my nurse was not able to pull back enough blood with her syringe to successfully draw my labs. I shrugged. It happens. I pointed her to a vein in my left antecubital space (inner elbow) that she didn't seem to see. Bingo! Labs drawn.


I had wanted to, and still want to, avoid having an Infusaport (a small diaphragm-like device that is implanted under the skin of the chest wall, attached to a catheter whose tip lies in a large vein, the superior vena cava, just above the heart. A special needle is used to puncture the diaphragm, to allow blood to be drawn and medications to be administered, all with one needle stick). Infusaports are great in many cases, especially for patients who need good, long-term venous access for their ongoing care, but they also can easily get infected, or clotted. From the beginning, I preferred not to have one, instead preferring to take my chances on getting stuck repeatedly for IV catheters and lab draws. My GYN thought I would have to have one. The surgeon did, too, and offered to implant it herself. So, I was pleasantly surprised that, at my first visit with him, my oncologist concurred with me. Like me, he prefers to avoid Infusaports if possible!

I figure, with 6 cycles of chemo, I have, at most, 25 needle sticks to endure, if things go as they did yesterday. I make a mental note to remember to drink more fluids before my next chemo appointment, to plump up my veins.


Once the labs were back, and I was settled in with my book, I was given a series of pre-medications: dexamethasone, Pepcid, and Benadryl, to prevent allergic reaction, and Aloxi, a drug to prevent nausea. The dexamethasone also helps prevent nausea, as does one other oral drug, aprepitant, that I took just before the chemo started. Apparently, taxotere, the first of my 2 chemo drugs I was given, is known to be prone to induce allergic reactions, even anaphylaxis. Three mini-bags of premeds went in pretty quickly, and my nurse then started the taxotere.


Within 3 minutes, I felt a warm, heavy sensation in my chest, just under my sternum, and up to my collarbone. Not painful, just warm and heavy. Well, she had warned me to let her know if anything seemed wrong, especially if I had flushing, itching, hives, or a feeling that my throat or lips were swelling. Since I did not have any of that, I kept quiet. The warm feeling passed in a few short minutes. Gone. Nothing else happened after that, so I was glad I had kept quiet. I have seen and treated anaphylaxis related to chemo drugs. I know what it looks like and, although I have never experienced it myself, I felt pretty sure that I wasn't having an anaphylactic reaction. It took an hour for the taxotere to be finished. Next, carboplatin was given over 45 minutes, with no problems, after which my IV was removed and I was allowed to leave.


The chemo room was pretty busy. During my 3 hours there, I was surrounded by other cancer patients, to the right of me, to the left, and across, all in comfy, reclining chemo chairs just like mine. We were all offered warm blankets. I took one, since I am always cold indoors where the air conditioning is cranked way up, and it was heavenly. The blanket warming cabinet has a plaque on it, stating that it was donated by the friends of a man who had, evidently, died of cancer. His friends, I suppose, felt the blanket warmer would be a nice way of offering comfort to other cancer patients. How sad and sweet.


Cancer patients came and went. One woman who sat beside me introduced herself and informed me that she also has ovarian cancer. My guess would be that she is in her mid-50s, and she is very slim and muscular, with short-cropped gray hair. She is obviously very physically fit and active, and she told me she works full-time when she can, and goes part-time when she needs to, and also teaches aerobic 4 nights a week. Her ovarian cancer was diagnosed when she had unexplained abdominal bloating. She told me she was diagnosed as Stage IV, in 2006. She told me that she was sent for a CT after 2 visits to her doctor for the same complaint of bloating. She waved her hands over her abdomen, demonstrating the extent of the swelling. "You already had ascites when you got diagnosed," I asked? "Yes, they drew gallons and gallons out of me," she replied.


Ascites is the accumulation of fluid within the abdominal cavity; in ovarian cancer patients, the fluid is secreted by the tumor itself. Ascites is considered a late sign of cancer within the abdomen or pelvis, since it takes a lot of tumor to make that much fluid. The swelling from worsening ascites becomes uncomfortable when clothes don't fit, the belly feels tight, or when so much fluid builds up that lying down causes difficulty breathing due to the upward pressure on the diaphragm.

She is now on her third regimen. (A third regimen means that she has already undergone 2 prior chemo cocktails and had recurrence after each). She was very matter-of-fact about what she has been through. I admit that I felt astonished that she is even still alive, having been diagnosed as Stage IV in 2006. Her third regimen consists of taxotere, like me, plus one other oral chemo drug that is used to treat some types of lung cancer, and which is not FDA-approved for ovarian cancer. As a side note, insurance companies generally do not pay for off-label drugs (drugs that are FDA approved for one disease, but considered experimental for other condition), and such new drugs are generally very expensive. I immediately wonder how much that must be costing her, whether her insurance covers it, whether my insurance would.


So, she knew all about carboplatin/taxotere, since that was her first round of treatment (as it is for nearly all ovarian cancer patients, I have learned) back in 2006. And so, she spilled everything she knew about my chemo's side effects. She made sure that I knew that I would lose my hair. (Of course, I already knew that). Without any prompting, she gave me her best estimate regarding when I would "crash," experiencing the inevitable fatique and wiped-out feeling that happens shortly after chemo is administered (her prediction: tomorrow). I took her name, email address and phone number, anyway. She was nice, and a health nut, like me. She might be a good source of helpful info, though maybe too much info. I realized that I have maybe now have joined the cancer TMI club, too.


Back home for over 24 hours now, I feel just fine. I have no inkling of the predicted "crash" coming on, though I have no doubt that it will come. That's chemo for you. But, maybe I owe my smooth sailing to the dexamethasone that I'm still taking, in tablet form, since it induces euphoria and insomnia. Nevertheless, today was a gorgeous day, and I felt so good that I wanted to get out and get some exercise, so Andrew and I went for a nice hike on Paynes Prairie, a few miles from our home.


Here is a video of 3 beautiful young bison who marched along the grassy trail right past us, with little regard! I was thrilled. The bison of Paynes Prairie have always eluded me until today, and then I got to be almost close enough to touch them! What a great day.

video

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.