Too Many Chiefs
I’m getting tired just thinking about explaining all of this, but I know you all wanna hear it.
Last week… no, wait, back up.
Two weeks ago, when I had my last CT scan (and waited FOUR HOURS for the results), Phase I oncologist (we’ll call him Dr. B) said that I should set up an appointment with my medical oncologist, the one who’s overseeing my case (we’ll call her Dr. A) as soon as possible, since she’d probably want me to stop taking the Magical Mystery Drug (the one that was no longer suppressing my lung metastases) and go back on chemo. So, like a good little girl, I ran home and made the appointment.
This Tuesday, when I met with Dr. A, the first words out of her mouth were, “So… what can I do for you?”
I was a little surprised that she wasn’t already aware of what Dr. B had thought, so I said, “Dr. B said that since the trial isn’t keeping down my lung mets, you’d probably want to pull me off it and put me on chemo.”
“Oh… from the email he sent me I thought he wanted you to keep going with the trial?”
::crickets::
“No, he told me you’d want me to do something more aggressive about my lungs.”
After a little back-and-forth, and telling her how crappy I’d been feeling for the previous ten days, she got on board with the chemo idea and came to the conclusion that since I hadn’t done carboplatin for a year, we could do that in combination with Alimta, and start on Tuesday (because I will NOT reschedule another First Descents trip!). Dr. A told me her scheduling coordinator would call me about appointment times for Tuesday, and shook my hand. I left her office pleased to be ending the nasty pills that have started giving me day-long nausea and still taste like dirty ashtrays, ready to switch tactics and get back to the business of kicking cancer’s ass.
Once I got home (of course), I realized I hadn’t asked whether to keep taking the Magical Mystery Drug for the rest of the week until starting chemo on the seventh. I called first thing (at the crack of 9:00) Wednesday, then airily skipped through my day waiting for a callback, without the pills, loving the taste of a glass of water and my freedom from being close to indoor plumbing.
Wednesday night at 8 I discovered a message on my answering machine from about 4:30 in the afternoon that said, “Please keep taking your study drug indefinitely.” Uh, what? I thought I was starting chemo.
Yesterday as I was waiting at school pickup for the boys, I got a phone call from the Phase I nurse practitioner, I’ll call him Angel, who asked how I was doing. I told him I felt lousy, and explained the mixed messages I was getting from the two different departments, and that no one seemed to know quite what the heck was going on with my plan. I told him, “There are too many chiefs here.”
He said, “Well, this little Indian is going to get to the bottom of things and I’ll call you as soon as I know.” Sweetie, you’re the best.
This morning, I left a message for Angel, just to check in and remind him he was working on something for me, since I could totally see the holiday weekend creeping up and not hearing from anyone until I just showed up on Tuesday at the crack of dawn. By the time I got home from the dog park, I had a message from the Phase I trial coordinator with my schedule for Tuesday’s appointments, which sounded a whole lot like my regular trial schedule. Grrrr… I waited for a call back from Angel.
At 12:45 he called and told me that we’ll check my CA-125 on Tuesday morning, and if it’s dramatically higher again (from 74 to 90-something at the last check) they’ll pull me off the trial and start chemo that morning. But if the CA-125 is stable, I’ll stay on the study drug. At least I knew what was going on, and that everyone was now on the same page.
Does anyone else think that with all the money being generated by and donated to The Cancer Factory on an annual basis, they might be able to spare the time for slightly more thorough inter-departmental communication? As opposed to, say, f*cking around with my life and my schedule like government employees?
God, I hate waiting. Have I mentioned that before?
It’s September…How Are Your Ovaries?
I’m reading a book about how making split-second decisions from the gut can be just as effective (and in some cases, more so) as examining copious evidence and making logical, scientific decisions over time.
Wish I’d known that in 2005. Maybe then I would have listened when my body started shouting at me. “Hey! You’re tired! More so than the average mom-of-two-little-boys!” “Yo! Down here! You’re not gaining weight, you’re bloated!” “Run, don’t walk, to the bathroom – bladder pressure overload.” And “No, it’s not the protein bars – your bowels are NOT happy.”
All symptoms of ovarian cancer. Classic symptoms, as a matter of fact. Like, textbook. But I was sure that there were logical explanations for all of the things that were going wrong with my body, including the pelvic pain, which I convinced myself was a functional cyst, since it hurt worse when I was ovulating.
If I’d known more about what the symptoms of ovarian cancer were, if I’d known that HALF the women diagnosed with ovarian cancer are under age 60, I might not have convinced myself that I was too young and healthy to have anything really wrong with me. I might have gone to see my doctor in December, when I first noticed things feeling…different. Nothing I could really put my finger on, but my instincts recognized changes before my rational brain did.
Over 21,000 women will be diagnosed with ovarian cancer in 2010. 13,000 will die from the disease. I’ll fight that second number, but I need your help with the first one. Let’s increase our vigilance about ovarian cancer, even as we lobby for research funding and to get more doctors to take our symptoms seriously.
Let my 20/20 hindsight help you or a woman you love be aware of the symptoms of ovarian cancer, so you (or she) will get checked out by a gynecologist as soon as you experience them, and get treated early enough to get on the 85% five-year survival side of the statistics, instead of the 35% side where I am.
I know I make ovarian cancer look good, but this is one club you do NOT want to join. Tell a friend. Or thirty.
Fresh Horses
Sorry I’ve been so quiet lately. The Magical Mystery Drug has been doing a number on my stomach, and between napping to kill the heartburn and napping to kill the grouchies, I’ve been a little hard to engage in conversation.
Last week’s Monday visit was a bit of a surprise. Although in hindsight, I sorta knew there was some news coming down the pike, seeing as how I waited FOUR AND A HALF HOURS for the results of my CT scan. The news is: lung mets don’t like the Magical Mystery Drug anymore, and they don’t want to play. They’re going to keep on growing the way they want to, and pfphthbpbhpt to anyone who says different. Pelvic tumors are following orders, shrinking and softening and being little Trial’s Pets, but noooooooo, not my lungs.
Thus I’ve spent the past six days waiting for an appointment with my other oncologist, who the Phase I doc said would probably want to take me off the trial and start chemo again (but I should keep taking the nine delicious pills a day just in case she didn’t want me to stop, because once I stop I can’t start again, etc. etc.). Today I met with her, and once we’d worked out that no, Phase I doc didn’t want me to continue the trial even once I’d met with her; he said SHE’d probably want me to stop it and go on chemo (you’d think the inter-office communications over there at that world-class Cancer Factory would be a little clearer), there’s a new plan in place.
Starting next Tuesday, I’ll be hopping back on the chemo train: carboplatin and Alimta. Supposedly not too debilitating, and I’ll get to keep my hair. (Good news/bad news: while I like having hair, mine is really pissing me off, and I miss my perfect, ten-second-toilette wig.) And the schedule will allow for me to still make my First Descents climbing trip on the 19th.
I was pretty discouraged, feeling like, “how many more damn things do I have to throw at this disease?”, but now I realize I have lots of options still open to me. Once chemo has stabilized my lung disease, we can start looking once again at the over 300 clinical trials that are available to platinum-resistant ovarian patients. So many choices… think I can find one in Miami for the winter?
Photo here.
I Got The Fever
Jeez, just when you think life is getting a little predictable.
Week 4 of Cycle 2 snuck up on me. I was pleasantly surprised to discover, at my Monday appointment last week, that it was my week off of the Magical Mystery Drug. Skipping home an hour earlier than expected, with food in my tummy and a song in my heart, I anticipated a light and relatively carefree week of getting back into shape, tasting my food and drinking cool fresh water, spending time with my boys, and a long-anticipated family reunion weekend on the beach full of champagne, good company, and steamed fresh lobster.
Ha ha, said the universe, guess again.
Monday night at around 9:30, I started feeling like I was getting a fever. That’s weird, I thought, I don’t get sick. (Well, apart from the obvious.) Checked with the thermometer: yep, 101. Tylenol PM, bed. Tossed and turned all night, but by morning, it was gone. Felt better Tuesday morning, although not well enough to make it to yoga. No sign of fever, until about 5pm. After checking in with the team, they said if the fever went away that evening with two Advil, I was okay, but if not I should come in to see them Wednesday. Which of course I wanted to avoid like the plague.
Wednesday dawned sunny and fever-free. The boys and the dog and I spent the better part of an hour and a half in the woods hiking, feeling pretty smug. Until I lay down for my nap, and felt the fingers of fever starting to creep up my neck. I ignored them and tried to go to sleep, but I knew it was futile. Called the team and they said, “Come on in.”
Which is always fun with two kids. But they were fed copious amounts of bagged snacks and watched the Cartoon Network while I saw everyone, peed in a cup, gave blood cultures from port and periphery. I stumped everyone with my lack of symptoms, but that night the fever was back again.
And Thursday night. Good news: Mr. W makes dinner and cleans up from it. Bad news: Friday morning I get a call that I have a UTI. A UTI? With no symptoms? Oh, yippee, back on high-grade systemic antibiotics again. And they do nothing to kill the fever.
So I muscled through Friday and Saturday with nightly fevers, the usual fallout from antibiotics, and no energy. It was great to be on the beach and see family members from far and wide, but I wish I’d felt well enough to enjoy it.
And when I’m sick-sick, not just chronic-sick, nothing else gets done. No reading, no exercise, and as you might have noticed, no writing.
Let’s hope this… whatever is gone by tomorrow, so I can deal with a day at the hospital, the fallout from CT contrast, and more Magical Mystery Drug. And write about something a little more interesting than boring crap like my internal temperature.
Lighten Up
Last week we had a mini-vacation and went to stay with friends on Martha’s Vineyard. We slept in, ate too much, had beers with lunch, napped on the beach (my favorite four-word phrase in the English language), went out one night without the kids and finished conversations. Ate s’mores. You get the idea.
I had succeeded in mentally reminding myself for three mornings not to forget to carry with us or administer my delightful meds (which must, you remember, be kept under refrigeration below 46˚). Since there were coolers all around, going to the beach, etc., I was able to dump them in and choke them down in the vacation-short space between breakfast and lunch.
Reluctantly, on Saturday we packed up our bags, double-checking under beds, nearly forgetting swimsuits and towels drying on the deck rail. I loaded my bottle of iced tea and the boys’ water bottles into the freezer to cool down before packing the cooler for the trip home.
The horde of us descended on a fish shack in Vineyard Haven to grab some lunch before catching our 2:30 ferry. As we waited with the hordes of other hungry people for our lunches, though, we realized we wouldn’t have enough time to eat and still make the boat. We grabbed our bag of sandwiches, said goodbye to the wife and kids of the family we stayed with, and the dad drove us the rest of the way to the ferry dock. Hugs all around, double-check the back of the car for our stuff, and bundle ourselves into the growing line of passengers waiting to climb aboard.
Son #2 dropped his Gatorade bottle for the seven-hundred-and-forty-third time, and I told him, “One of these times, that bottle’s going to split open, and then you won’t have anything…to…drink…but…water…until…” ::Crickets::
“Mr. W, did you grab the cooler?”
“No.”
Crap. “Left my damn drugs at the house!”
I turned and started running (wearing a 35-lb backpack, no less) out to the street where I could see our friend had just been waved into heavy Saturday August Vineyard traffic by the cop trying to keep order. Thank heaven his window was open.
“MARK! MARK!” He turned to look at me.
“I LEFT MY DRUGS AT YOUR HOUSE!!!” (In hindsight, not the best sentence to shout across a crowded intersection in front of a policeman.)
Revision: “I left my meds in your fridge!”
He pulled back into the parking lot, and my three gentlemen shuffled over and got back in the Jeep. I started in browbeating myself about my forgetfulness. “Jeez, I can’t believe I forgot it. I’m so sorry to make you have to come back. I can’t believe I didn’t remember that stuff! How many times did I remind myself that I had to get the cooler? What an eejit.”
This went on for about five minutes. Then I stopped for a second, and realized that I was the only one beating me up about it. Not even any teasing (unusual). And in a flash of maturity, I quit. No one seemed to be upset about having to miss the 2:30 but me. And on second thought, what the hell did I care? Why was I getting all jacked up?
We rode back to the restaurant to finish lunch (the best lobster roll I’ve had in years) with our friends. There was another ferry at 3:45, which meant we’d get home to pick up our dog a little later. No harm, no foul – it’s not like we had an appointment or something waiting back on the mainland.
This verbal self-flagellation is a lifetime habit for me, and I suspect for many others. Does it come from my desire to cut on myself before anyone else gets a chance to? Or am I so concerned about inconveniencing others (and possibly having them speak disparagingly about me after I leave) that I am trying to make sure they know I’m not really that inconsiderate? Whatever the reason, it’s stupid, and a waste of energy.
It’s time to adopt the Dr. Seuss quote I heard recently and have come to adore: “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” I’m a good person, my friends know it, and my life is way too short to spend time browbeating myself for mistakes. Everyone makes ‘em, and we’re all doing the best we can. Move on.
Extended Stay
A very dear (and possibly quite intoxicated) friend emailed me this afternoon with a link to Christopher Hitchens’ beautifully worded essay about his cancer diagnosis, saying it reminded him of my writing. While I am highly flattered, and definitely aspire to that level of proficiency (not to mention professional success), the essay did strike a number of chords.
Hitchens speaks of the discovery of his illness as “…a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.” This international one-way trip is the most shocking transition, especially for people (henceforth known as “patients”) who were previously healthy and unencumbered by medical interventions any greater than the occasional Advil. With diagnoses like ovarian cancer, what you think at first will be just a brief visit turns out to be a longer stay, with an extendable visa that might last the rest of your life.
For the past few years, I’ve envisioned myself as I always was: a mom, wife, cook, fashion fiend, friend, sister — exercising, writing, cleaning, driving, living my life — who also happened to have cancer. This summer, however, the paradigm has shifted. Now I feel like I’m a cancer patient who also occasionally writes, walks the dog, folds laundry, and makes dinner. My treatment and attendant side effects have gotten more insistent, more interruptive. I have to have my daily meds, straight from refrigeration or a cooler, at the same time every day. Within three hours, I need to be near indoor plumbing. By mid-afternoon, I need a nap. Water tastes horrible, so I have to bring my own beverages. Comfy shoes. Short walks and a place to sit down. (I’m starting to sound like my grandmother. Who’s 103.) I can no longer be the same person I was in that other country.
A part of me longs for the early stages of my illness again, that optimistic sense of purpose and determination, the adrenaline-charged vigor of the attack. Like a Saturday morning, the future was still hazy but full of potential; the fear of the unknown can be enervating but at least it’s a plan. Hitchens is starting chemo for his esophageal cancer, and I wish him health and strength to get through the journey. I miss the innocence and blind optimism and faith in medicine that carried me through that first summer with cancer. But the wisdom and perspective of the ensuing years I wouldn’t trade for anything.
Okay, maybe a clean CT scan. Or a book deal. Hitchens? Throw me a bone, eh?
Photo credit here.
Cancercoaster
Last night my husband and I were watching that new Tony Robbins series on NBC. The episode featured Tony helping a couple break out of their ruts: at their wedding reception in Mexico, the exuberant groom had dived into the shallow pool to swim over to where his wife and her friends were dancing, and broken his neck. Quadriplegic since that day, they had ceased to be newlywed husband-and-wife, and become nurse-and-patient. During the course of the show, Tony had the excited husband and terrified wife skydiving over Fiji to show them that there’s no limit to what a paraplegic can accomplish but his imagination. (It was a pretty great show, and I’m a cynic. But I dig transformations. Jillian’s my homegal.)
At one point Mr. Wonderful and I were talking about the wife and the role she’d settled into, and how she was paralyzed herself by her fear of losing her husband altogether, her sense of injustice at having to suffer through a life so different than the one she’d imagined. In mid-sentence, Mr. W started to well up, and as I grabbed his hand, he broke down. He said he was remembering the night of my first surgery, and how he’d been feeling all the same things: angry with the doctors; helpless at my illness; terrified of our new future and what it would bring; sad for me and what I would have to go through.
After a long hug, we moved on, but I realized that in addition to cementing our dedication to each other, the moment represented just another stop on the wild ride we’ve been on since 2006. Cancer diagnosis? Down. Find the right oncologist and a plan of attack? Up. IP chemotherapy? Way down. Finish treatment? Up. Nine months of remission and a big thank-you party? WAY up. Recurrence? Doooooown. You get the picture. Cancer patients and those who love them learn an incredible amount in the simple task of waiting: waiting for test results; waiting for scan results; waiting for the surgery date.
I’d love to say that a zen-like patient peacefulness is the result of all of this unpredictable change. But our reactions to the ups and downs have yawed wildly as well. Sometimes I’m able to accept a recurrence notice with resigned determination, while my mother bursts into (prohibited!) tears. Sometimes I come home from a simple office visit and a blood draw and snap at everyone in the house and Mr. Wonderful calms me down and gives me needed space. Other times he rages against his lack of control and we argue about something stupid like taking the last cold Diet Coke out of the fridge (a hanging offense).
I’ve had a busy month in the up-and-down department. From the down of intractable lung mets and decreased physical activity, I sprang back up with the great PET scan results, confirmed by CT last week. But not all the way up, because my left leg swelling kept increasing, and everyone (including me, in tears on Monday) feared it was another blood clot, which would mean blood thinners, which would make me ineligible for the trial that was saving my life (way down). Yesterday I had an ultrasound that showed no trace of a clot, meaning I am cleared to receive lymphedema massage and continue the trial (up Up UP!)
Which brings me back to my post on Friday about good support. By talking openly and honestly, and patiently listening without judgement, Mr. W and I have been able to weather the vagaries of this unpredictable odyssey. It’s definitely been a long learning process, with exemplary moments and embarrassing blow-ups. Often, the patient-listening-without-judgement has had to come in the form of an outside party, namely our therapist, who I maintain is a priceless aid in my recovery. But the result has been the smoothing out of the rough places that used to trip us and send us (and by “us” I mean our whole support team) spiraling off in different directions – now we hold each other up and ride on together.
Certainly the clichéd “fullness of time” has lessened the height of the peaks and the depth of the valleys. I prefer to think of it as a mosaic, or a Seurat painting: up close, each tile or spot of paint seems powerful, distinct; but with distance, the whole image becomes easier to see, the emotional shapes easier to recognize, the cohesion and strength of our family more visible.
I’ve never liked roller coasters. Too fast, too scary, too much stomach-in-the-throat. Since I have to be on this one, I’m glad I have reliable hands to hold onto. Who are yours?
Photo link.
Family Friend Supports Cancer Research; Please Help!
Dorcas Ann Casey, on the right, with her mom.
Hi All:
I have a favor to ask. A good friend of mine, Dan Pike, is competing in the Ironman Lake Placid this weekend (2.4-mile swim, 112-mile bike, 26.2-mile run!) in memory of his cousin Dorcas Ann Casey, who lost her battle with synovial sarcoma, a rare soft tissue cancer, in 2008. Dan is raising $25,000 to support the Dorcas Ann Casey Fund that will benefit synovial cancer research at Memorial Sloan-Kettering Cancer Center.
Dorcas was the source of much comfort to me during the early stages of my cancer fight; she sent care packages with comfy slippers and yummy candles; she sent books of inspiration and letters of support. She and I had a rollicking time the last time I saw her (with my GI-Jane-short hair) laughing at the random ridiculousness of the whole cancer trip. I was so sorry to hear she’d lost her fight.
If you’d like to join me in supporting my dear friend Dan in his heroic task this weekend, please visit the link below which whill take you to his page on Fred’s Team, Memorial Sloan-Kettering’s site for fundraising.
To donate online:
http://mskcc.convio.net/site/TR?px=1771450&fr_id=1370&pg=personal
To contribute by check, please make checks payable to MSKCC, noting “Pike Ironman/Fred’s Team” in the memo line, and mail to:
MSKCC
Attn: Elise Cook, Annual Giving Officer
633 Third Avenue, 28th Floor
New York, NY 10017
Thank you all for your help – let’s keep fighting to get to a place where cancer is just a distant memory. Please feel free to forward this to anyone you know who will help!
Photo courtesy Dan Pike.
Help Me Help You
Over the past couple of days I’ve answered a few cancer babes’ questions about their support teams. These ladies have been relatively new patients, and while dealing with their own fears and worries about their new diagnoses, they are feeling the changes in their relationships with their spouses, significant others, or family members. Reactions have ranged from anger, to cool distance, to hovering, to quiet resignation. They’re all okay, for initial emotions, but the reactions surprised the patients and added another worry to their lists. I’m saddened to hear of the insecurities they’re feeling, right when they need to feel safest and most secure.
In a perfect world, when we are diagnosed with a serious illness, our loved ones would rally to our side, offering support without need for recognition, organizing teams of ride givers, casserole bakers, and garden weeders while maintaining enough distance so we could rest and recuperate without concern. They would have easy and affordable access to support groups that give them the chance to vent their own frustrations and receive advice and affirmation from others who have been down the same path. Their emotions recognized and validated, they could be the supportive, understanding, flexible caregivers their sick ones need most.
Last time I checked, this world was far from perfect (really!), and being the perfect patient or the perfect caregiver may not be possible. But with support, understanding, and strong communication, we can learn to help each other through. I’ve put together a list of tips to help open the lines of communication, and a few resources to go to for advice or help.
- Ask each other how you’re feeling, what you’re scared of, and what you need from each other. Some people think the best way to support a sick loved one is by remaining stoic and swallowing their own fears. It sounds so simple, but sharing what you’re thinking about with your closest allies will not only help them recognize what they are feeling but also understand that you feel the same way. Make sure to see things from their side of the illness; while you’re worried about losing your hair and not being attractive anymore, they may be thinking about losing time at work, feeling like they have no control over the illness, or betrayed by your absence. None of these feelings is “wrong” – it’s only important to identify it and talk about it.
- Try to include your caregiver in decisions about your treatment, to give them a sense of having a little control as well as an opportunity to ask questions of your medical team (with your permission, of course). I know it was helpful, especially in the beginning of my disease when I felt like I’d been run over by a freight train, to have a family member at appointments and treatments with me to ask or answer questions that I had forgotten or spaced on.
- Diversify your list of helpers. I’ve spoken before about the priceless lotsahelpinghands.com – by giving others the chance to do for you you’re also lightening the burden on your chief caregivers. They need to live their own lives in addition to caring for yours.
- Recognize their efforts and make sure they get a break. As a recipient of numerous SpaFinder.com gift certificates, I am a big proponent of the extravagant pampering appointment: it’s customizable; it appeals to both genders, whether your hubs needs some manscaping or just a massage; and it’s something that most people won’t buy for themselves.
- Spend some time with them and don’t mention your illness. It’s so easy, like always discussing the kids with your spouse even on date night, to get pigeonholed into talking about cancer. That’ll just get everyone down. See a movie. Go out for dinner. Spend an afternoon loafing around the local bookstore. You had a relationship with this person BEFORE you got sick – maintain it and it’ll be there AFTER you get well.
While you’re laid up (and there will be plenty of that), spend a little time on the internet looking at resources to help you support your caregivers. Whether they’re joiners and would love to get into an IRL support group, an online forum, or would rather just read some helpful tips to get them through, there are plenty of places to look for more information. Here are some of the best that I’ve found:
- American Cancer Society (www.cancer.org). There’s a whole section for caregivers, with tips for getting through and a section on finding local support.
- American Association of Marriage and Family Therapists (www.aamft.org). Marriage and family therapists not only help couples with their marriages but entire families dealing with crises, traumas, and major illnesses. I chose our therapist from the list on this site based on his experience with young children. (He hasn’t met our kids yet, but knows our family well should I croak it and they need support.) Many therapists will accept medical insurance, and many carriers cover a certain number of sessions per year as adjunct treatment to your illness.
- Ovarian Cancer National Alliance (OCNA) has a great online support community (http://www.inspire.com/groups/ovarian-cancer-national-alliance/). For patients, family members and caregivers, it’s an amazing group of people dealing with and supporting this disease. Post a question, ask for advice, or just kvetch about how crummy you feel – all comers are welcomed and supported with open arms.
- And, for that matter, Inspire.com has online support groups for other cancers, too. Top-notch.
- Gilda’s Club (www.gildasclub.org) has joined forces with The Wellness Community. With Clubhouses in cities all over (although, unfortunately, not mine) and now a thriving online forum, The Living Room, support is available for everyone in the family.
My parting thought? Talk. Talk to each other, about the easy stuff and the tough stuff. Talk about how you feel, what you’re afraid of, how you’d like to be supported. Be open to hear things you might not like; be honest about what’s going through your mind. Talk like it’s the last chance you’ll get. It probably isn’t, but there’s no time like the present. Cancer has certainly taught us all that.
Finally.
For those who aren’t on facebook (I understand, really), you might have missed my jubilant post-blog update on Monday: THE TRIAL DRUGS ARE WORKING. Those nasty little grey capsules that make my mouth taste like a dirty ashtray are actually worth the loss of my taste for chocolate. (Sad but true.)
I climbed out of the PET scanner on Monday and (after a brief trip to the cafeteria for my first food in over twelve hours) went straight to the Phase I doctor’s office. His preliminary read of the scan thirty minutes later showed a “marked decrease” in the metabolism* of the cells in my calcified tumors and lymph nodes, the ones that we had pegged as stable. While he offered no opinion of the new mets in my lungs, and I’ll have to wait for a full radiologist’s report on the scan for that, he was very excited about the “dramatic” change in my tumors. He said that the trial had shown the best results for ovarian patients, and that they were thinking about designing a Phase II trial for ovarian patients based on the good results. Including mine!
I’m beyond thrilled to get some good news for the first time in eighteen months, and REALLY glad that all of this rigamarole that they (Big Pharma) are putting me through for this drug might actually have an impact on other patients of this crappy, insidious, sneaky-ass disease.
Next week: further results of the PET scan; CT scan and results, and a week off the drug. Rash? No rash? Increased energy? We’ll see.
But you can quit mentally divvying up my couture for the near future. Vultures.
*PET scans work by reading the rate that your cells metabolize an injected radioactive sugar solution. Cancer cells metabolize sugar at a much higher rate than healthy cells, so after sitting with the solution in your bloodstream for an hour, they run you through a scanner and read the “hot spots” that have metabolized the most radioactive solution. These are measured by the amount of radioactivity they emit, and the rates are compared from scan to scan.
Photo courtesy images.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
