Friday, June 29, 2007
I had my first migraine aura 27 years ago, in the month before I got married. My husband-to-be was a young doctor. He’d never run across a complaint of flashing lights taking over a person’s peripheral vision, so he ignored his own good medical advice (“When you hear hoof beats, don’t assume it’s a zebra.”) and secretly feared it was a brain tumor. He sent me to a neurologist to prove himself wrong.
And fortunately for me, he was wrong. Migraine auras are common, many times followed by a migraine headache. In my case, the auras are never followed by headaches, and in fact, I’ve been thankfully free of the migraine headaches I experienced as a young woman.
My auras tend to last about a half hour, gradually increasing in scope until they take over my entire field of vision. I reach a point where it’s hard to see anything through the flashing lights, and minutes later it’s over. These episodes are infrequent, typically showing up in times of stress.
Not surprisingly, I’ve had several in the past few weeks, most recently this morning. As far as I know, this is just another reaction to the stress that’s settled into every crack in my life. But I’ll report it to my doctor when I see her Monday. Headaches are also a known side effect of the anti-nausea drug I’m on, a generic form of Zofran, which means this form of migraine may qualify.
But in case the logic has escaped any in the medical community, stress is an undeniable side effect of cancer.
If you’re looking at the picture and thinking: “So, when are you going to show us the wig?” Well, that’s exactly what I was aiming for.
Julie is the person at Devachan who specializes in wigs, extensions, and the like. She commented on how much hair the wig makers always put in.
“They probably put in too much to make sure they give you enough,” I said.
“But no-one needs that much,” she said as she thinned mine to remove the heavy look it started with. The more she worked with it, the more she appreciated its quality: well made, with really good hair. I left wearing it, wanting to give it a trial run in the real world.
This was a pretty good day. I got to visit my beloved Devachan Salon, and I was able to have lunch with my brother who works nearby. Although I carry my cancer around with me all the time, like an elephant on a leash, it remained sidelined while I enjoyed the activities of the day.
I got a few blocks from the salon and noticed in a window reflection that the wig had slid back slightly behind my hairline. Now, trust me, this slight slippage isn’t something you would notice, and certainly not someone passing me on the street. They’d be more likely to notice me tugging and pulling it back into place. But my perception hit me hard. Today I have hair of course, but next week or next month… who knows?
It was as if my attention took a momentary misstep, and in that moment I unwittingly walked headlong into the shop window!
What amazes me most is how suddenly this can happen. Mood swings from sixty-to-zero in nothing flat.
The elephant ran me over.
Thursday, June 28, 2007
I saw an ad on the subway this morning: a young woman reclining, a sensual, romantic look on her face. The caption: I’m in control of myself and my future. I use condoms.
I wanted to whip out a crayon and write: You wear condoms?!
What a false sense of security! How much control can she possibly have if she needs to rely on someone else’s compliance? And how dumb is it to expect one “catch-all” to protect against all problems? Is she more concerned about pregnancy or disease? And what about unemployment and depression and failing grades? Will condoms guard against those?
Maybe I take things too literally.
But at least the fever has broken for the time being, and I've regained my sense of irony.
Wednesday, June 27, 2007
I just had the most disorienting experience!
I was feverish much of the day, starting around 11 AM. Fever spikes can occur any time during the seven days of Genasense infusion, and mine went from 101.3, when I first noticed it, to 102.9 a half hour later. I graduated from Tylenol to Advil to get it under control, and it hovered around 100° for the rest of the day.
At 5 PM, wiped out from fever in combination with the heat and humidity of the day, I took some more Advil and lay down in my clothes for a nap. Next thing I knew it was 7 o’clock.
I had slept fourteen hours, and I had missed my nightly Temodar chemotherapy pill!
I put in an off-hours call to my doctor and raced around getting ready for my 9 AM office appointment to draw blood. My doctor, and the nurse who monitors my participation in the program, are both out of town at a conference, so I called and spoke with a covering doctor who isn’t as familiar with the protocol for this trial. He looked into it and determined I should wait until tonight for the next dose. Three days into the program and already I’d flaked out!
I babbled on about sleeping fourteen hours and told him I’d be in the office later today for labs.
“You mean tomorrow,” he said.
“No, today, Thursday,” I said.
I stared at my “Drug Diary”, still thinking it was morning, and simply could not figure out how I’d stuffed all those hours into the wrong day. I’d written notes about what side effects I had and what drugs I took, but had I made Wednesday up?
Finally I looked out the window and noticed the sun was going down, not up.
Phew... I didn’t miss my dose after all.
Some years ago I watched as a friend’s wife died. I didn’t know her; he was my friend. I stood by for years in relative silence and witnessed the crushing effect her illness had on him and their family.
She was furious. She couldn’t stand that it was happening to her. She found every occasion she could to remind him that she was dying, he was not, and she hated him for it. She rebuffed every attempt he made to reach out to her. What could he possibly know about it? It was her problem and she only wanted for it to go away. If he couldn't do that for her, why would she want to talk about the monster she didn’t want to face? What would be unleashed if she admitted to herself the full horror of her condition? She saw the situation as hers alone, and seemed to think that letting him love and help her would give free rein to her deepest, darkest, most devastating feelings.
I understand a little better now what drove her to those conclusions and fueled her behavior, but at the time I couldn’t imagine how she could shut her family out so completely. Conversations about her always ended in a quizzical “But…”.
And at the time I thought I could certainly do it better.
But really, I wasn’t asking for a chance to prove it.
I woke up with a headache yesterday and again this morning. The nurse assigned to oversee my participation in the clinical trial shrugs it off as a side effect of the anti-nausea drug I take before my Temodar chemo pill. She says it’s important to continue taking Tylenol every six hours, and that does help. But I don’t wake myself to take it, so by morning the headache has crept in.
That’s one theory.
In fact, it’s not unusual at all for me to wake up with a headache. Life is stressful, after all. Particularly so when billed activity is light, which it was for some time before this new problem landed in my lap. Now that I have an elephant in the room, following me around morning to night, it’s even more difficult to concentrate on client problems. Billings suffer, I worry, and I wake up with headaches.
Every day's an adventure.
Tuesday, June 26, 2007
I've been getting really good feedback about this blog. Although, truth be known, I don't suppose anyone would tell me if they found it tacky, tasteless, and over-the-top TMI!
(Wikipedia definition for TMI: “Too Much Information," a slang expression indicating that someone has divulged too much personal information and made the listener uncomfortable.)
A couple of people have called it "inspiring", which comes as kind-of a surprise. Mainly I want to connect with people I know and who I know are worried for me. We all have busy lives, and it's just not feasible to be on the phone all the time.
It's also helping me maintain some distance from the problem so I can look at it a little dispassionately.
Soon after I wrote that last line to my nephew, I got on the exercise machine and heard these words in The History Boys, the movie I was watching at the time: “There’s no better way of forgetting something than by commemorating it.” The character said this in reference to a memorial for WWII soldiers, speaking about the unfathomable horror of that war.
This I know: I can manage the terror a little more effectively if I keep the monster in front of me where I can examine its details. To some degree I have to do that to keep my mind from drifting to the bigger issues.
Monday, June 25, 2007
I was pretty bummed this morning anticipating my first day of chemotherapy. But the physical effects so far are minimal and for now, it's mostly a matter of getting to know the details and working it into a routine. The doctor said I might have fever tonight, so I've been taking Tylenol proactively every six hours, and so far, nothing.
The complete treatment cycle takes eight weeks; six weeks of drugs followed by two weeks of rest. During the two weeks off, I’ll have another total-body PET scan. I’m not sure what they’ll be looking for to determine whether to continue or not, but based on their measurements, we’ll repeat the treatment cycle up to a total of four times.
The six weeks of drugs is actually two three-week mini-cycles. I started today with the experimental drug, Genasense. A nurse inserted a special needle through my skin and into the cap of the mediport. A long tube runs from the needle through an electronic pump, into an IV bag. The pump is a 4x5 inch brick that sits with the medicine bag in a fanny pack that I wear around my waist or as a shoulder purse. The pump constantly monitors and times and dispenses the proper amount of drug. I don’t feel it flowing or anything, but every once in a while I hear a low sound, like a camera lens going into focus.
I’ll be hooked up to this pump for seven days. Next Monday, when the IV bag empties, I’ll be back in the doctor’s office to remove it, and to get an infusion of another drug, Abraxane. That’s it for IV drugs until the fourth week, when I start back on the Genasense pump. During the entire six weeks of drugs, I’ll take one Temodar capsule per day.
Those are the treatment details. Boring as they may be, with names that are hard to remember, it’s comforting for me to have it spelled out into a plan of action. It’s a pattern and a rhythm I can follow. My visits to the doctor’s office will become routine.
There’s a special floor for the IV treatments where I sit in a private “room”. They call it a room, but it’s only three walls and a curtain. Still, it’s private enough, with a reclining chair, a phone, and a TV that I didn’t watch. I brought my computer and hacked into their network to get my email. It was actually kind of a relaxing day, apart from all the needle sticks.
Now I have to figure out how to share my life with this package of medical electronics I’m carrying around for the next week. "Get creative," the nurse said.
The tube is long enough to leave the pack outside the shower while I'm inside, and I can thread the tube under my clothes pretty successfully. But it's going to make sleeping a little tricky. I'm mainly afraid I'm going to somehow tangle in it and pull the needle out! And there's the issue of what to do if or when I start beeping, which can happen if the tube gets kinked. So far it hasn't happened, but I imagine it can be embarrassing. You know, like a cell phone going off in a quiet lecture hall.
Sunday, June 24, 2007
I’m a foodie. I love sharing an excellent meal and a good bottle of wine with friends. Set us in a fine restaurant, where none of us is burdened by hours of preparation and cleanup, and that’s my idea of heaven. I’ve always enjoyed reading restaurant reviews and collecting recipes, and for much of my life I also enjoyed cooking, although that’s lost its luster now that I mostly eat alone.
The dark side of my relationship with food is how I use it to stifle anxiety. I tend to greet stress with a pint of ice cream. Combine that with many hours each day sitting in front of a computer and you can appreciate that my waistline suffers.
I started a new exercise regimen about two months ago. Exercise is nothing new to me. I’ve always found ways to keep fit, and enjoyed doing so. Unfortunately though, that hasn’t stopped the slow progression of higher numbers on the bathroom scale. This new program involves short intervals of high exertion alternating with slow cooldown periods to regain a resting heart rate, the premise being that this ultimately burns more body fat than a single long, continuous session of moderate effort.
It may be too early to tell for sure, but this new exercise plan seemed to have a positive effect: about a pound a week for six or seven weeks.
Then came the diagnosis.
I’ve continued to exercise these past two weeks, but of significance is what’s happened to my appetite. I keep forgetting to eat! My insides are in such turmoil and sometimes I choke on thoughts of food.
My first course of chemotherapy starts tomorrow and I don’t know what’s going to happen once I'm taking strong drugs into my system. I've heard chemo can have cumulative effects, so I may not know my reaction for a while. My doctor has said this treatment shouldn't make me sick, so I'm trying not to speculate.
For now I'll just welcome the opportunity I've already been given to kick my metabolism into a higher gear.
I’m a bit of a hermit. I’ve become more so over the years. My life was somewhat more social when I was younger, but the last few years have more and more focused on work and supporting myself. The problems of remaining an independent consultant consumed me to where I haven’t always felt there was time left over for fun. And that attitude plays well with my tendency to believe deep down that I probably don’t deserve fun anyway.
Yes, I’ve struggled with depression. But when I feel weighted down like that, I don’t want to share myself with others. Asking for help proves nearly impossible. I dig into the place in me that dictates I do everything myself and for the most part, remain alone.
Since my diagnosis, many people have reached out to me. I’m so touched by all the warmth, generosity of spirit, and genuine caring. My friend Althea says people are grateful to find any way they can to be helpful and show support. I'm not used to being a center of attention, and this is yet another way I’m pulled outside my comfort zone.
My sister called early yesterday to invite me to share babysitting duties with her on Long Island. This wasn't to be a chore; it's time she cherishes with her three young granddaughters. I drove out there and shared precious moments with all of them.
In the evening, I drove back to Westchester, where I’d been invited to a live concert in a local theater. Music has comforted me through some especially rough periods in my life. I love live music and have spent many nights attending shows in nearby clubs, restaurants, and small theaters.
Richard Thompson is a fantastic guitar player. 1952 Vincent Black Lightning is one of his best known songs; it's certainly my favorite. He makes technical excellence appear effortless, while infusing his music with a quality I like to call “emotional texture”.
Last night’s show was terrific and terrifically enjoyable. In all, a wonderful day.
I’m truly touched.
Saturday, June 23, 2007
I had my mediport placed yesterday. As explained to me, a mediport is a small titanium reservoir embedded under the skin between my shoulder and neck, near the collarbone. Its rubber covering allows access via a special needle, and at the other end, a tube attached to the reservoir empties into a nearby vein. They choose a larger vein to minimize irritation from the chemotherapy drugs that are going to flow through it. The doctor explained that a lot of the sickness chemo patients experience comes from running the drugs through small veins.
I was sedated for the procedure. Good thing too, as this was essentially minor surgery. I didn’t feel any pain while it was going on, and was able to walk from the hospital to the train station shortly afterward. But the experience and sedation knocked me out. I fell asleep soon after I got home and slept for twelve hours.
The doctor who performed this surgery is the same one who did my pulmonary biopsy. “Do you have any questions for me?” he asked.
In fact, I did have a question that others who know me may have wondered also. “Are there different types of cells for different cancers? They found cancer cells in my lungs. Why is my diagnosis melanoma and not lung cancer?”
He explained that pathologists do in fact have ways of distinguishing among various forms of cancers. They use a number of different stains to clarify and identify characteristics. There was a pathologist with a microscope in the room with us during the biopsy, so they were able to look at my aspirated cells right away. He remembers that they appeared dark, indicating the presence of melanin, the pigment-producing skin element where melanoma grows.
This begs the question: Is it better or worse to have metastasized melanoma or lung cancer? In fact, every case is different, but that may be more of a philosophical issue than medical.
Thursday, June 21, 2007
In an attempt to be proactive, I went online to gather information about wig salons and, to my surprise, found a store not far from where I live that works hand-in-hand with insurance companies. Tiffany Wigs claims to be “the only in-network insurance provider in the Tri-State area.” I called and arranged to come right in for a consultation.
The store owner is a tough, spirited, cancer survivor who was given three months to live… fourteen years ago. We had a lot to talk about while I tried on wigs. She helped me pick out a really nice curly style very close to my own color and length. It’s top drawer, human hair, expensive.
But Phyllis insists that all she needs is a prescription and diagnosis code from my oncologist to get the whole bill paid by my insurance company. Her contract with the insurer means they’ll pay her directly without anything out of pocket from me. She says there's a one wig per lifetime benefit, so might as well make it a really good one.
I hope it works out the way she says.
Wednesday, June 20, 2007
Two years ago, my friend Susan introduced me to a salon that specializes in curly hair. At the time, I was getting haircuts in a local salon near my house that specializes in mostly unimaginative styling. My hair had changed over the years and I'd given up on ever having curls again. I whined about missing my curls and wanting to let it grow, but somehow, I always walked out of there with the same short, blow-dried-straight, middle-aged-suburban do I saw in every chair around me. I wondered whose head it was anyway!
The first time I went to Devachan, Susan was getting her hair cut there. Whereas every salon I've ever been in washed hair first before cutting it, Rosie cut Susan's hair dry. She stared intently as she trimmed and placed each curl in its proper place on Susan's head. She was an artist finding the balance that perfectly set off Susan's face.
Rose looked up from Susan's hair long enough to comment on my nice curly hair. She won me over. I made the soonest appointment I could, and I've spent the past two years growing and nurturing the curls Rosie managed to unleash.
This evening I went to Devachan again for an impromptu consultation. My doctor says I'm going to lose my hair from the chemo. I went to the place I'm so fond of for advice about buying and caring for a wig. I got the information I need to go shopping this weekend. Then I'll take the wig back there for styling so I'll be ready to put it on when I lose my hair. I just don't fancy the thought of appearing in public bald.
I'm a pretty private person. I don’t normally volunteer a lot of personal details, and I find lots of ways to avoid feeling exposed. This blog is a huge departure from that.
“That’s not my way,” my ex commented when I told him I’d started one. But I suppose this is a way for me to throw rocks at the enemy. Get in the first shot and hurl something – even if it’s just words – with intensity. Keep it from getting so dark around me I can’t notice something creeping up to grab me.
Besides, my experience tells me the most devastating fears are reactions to the unknown. I easily get paralyzed when I don’t know what’s coming or from which direction. The panic I’ve witnessed in myself and others has all radiated from the question: “What’s going to happen to me?” Simply asking that question implies passiveness and lack of control that adds fuel to the burning fear.
For my peace of mind, I’m trying to keep lights shining on the issues. Huge floodlights. Get enough information to make decisions and plans and keep my priorities straight.
But I’m way outside my comfort zone.
Monday, June 18, 2007
It’s Monday night and I’m breathing a huge sigh of relief. I’ve got a course of action, a positive direction. My life holds promise again!
My 2 o’clock appointment with the oncologist stretched out to nearly 6pm. Followed by a celebratory dinner with my sister.
First came results of yesterday’s PET scan indicating confinement of malignant cells to my lungs. There are about ten tiny bilateral nodules, consistent with the findings of last month’s pulmonary biopsy. Surgery is not an option in this case. The target is too small and too scattered. Apart from the invasive nature of surgery, there’d be no guarantee of getting them all, or that more wouldn’t replace them.
What options are there then? There’s chemotherapy. The rate of improvement for a course of standard chemo may not be much to write home about. But we can aim higher. My doctor runs clinical trials that mix chemo with experimental drugs that act as a kind of booster, where experimental means a drug not yet approved by the FDA.
The trial she recommends combines two traditional anti-cancer drugs (Temodar and Abraxane) with Genasense, an experimental one with exciting possibilities. It has already achieved eleven of the twelve FDA requirements and it has my doctor’s team lobbying for its acceptance. She’s been invited to Spain in a few months to present her findings in conference there.
So I’ve signed up to start this trial next week. My doctor’s enthusiasm is contagious. Her findings so far indicate that patients who respond to this treatment respond “completely”. She’s achieved a high rate of total remission where other treatments had limited success. Even more striking than overall statistics is the success rate achieved in patients with normal levels of blood enzyme LDH. She’s excited about the potential in my case where I am healthy and have excellent blood numbers. There are potential side effects, but for the most part patients are not sickened as they typically are with chemo.
I’m sure I’ll have plenty of mood swings over the course of the next many months. This course of treatment runs in eight week segments: six weeks on medication and two weeks off during which they run more CT scans. It can be repeated up to a total of four cycles. Most of the treatment is administered at home via pills and by pumping the experimental drug through an IV device embedded under my skin near the collarbone.
Right now I’m studying the materials my doctor has given me, anticipating placement of the “mediport” IV device on Friday, preparing for the eventuality of losing my hair, and thinking about the client work I need to get done now that I have some of my mind back.
More updates to come….
I don’t go to many parties. By choice. On occasions when I do end up at them, I frequently find myself helping out in the kitchen, hanging out by the bar, making small talk when I catch myself in the presence of others equally awkward at socializing, and more often than not, just wandering around observing people and smiling when they notice me.
I don’t mean to make myself out to be a wallflower. I actually love interacting with people I know and care about. And I think I have a knack for putting others at ease.
It’s more that I’m self-conscious. I’ve never liked being onstage and I’m a terribly bumbling performer. I’ve always preferred to promote other people’s exhibitionism rather than risk the embarrassment of my own clumsy attempts.
On the other hand, I hate to miss out on anything. So at those parties I do end up attending, I’m usually one of the last ones out the door! It’s ironic I suppose, but only when the crowd starts thinning out do I start feeling less guarded. There’s a growing awareness that the event is coming to an end, and I want to capture whatever my holding back may have caused me to miss. This feeling goes way back to childhood when I always wanted to stay up later than my parents thought I should. Just a few more minutes… to see how things play out.
Okay, obvious metaphor: I haven’t lived my life completely. Maybe I’m a slow starter, hesitant to jump in, but I’m not ready for it to be over yet.
I had occasion to talk with my ex. He expressed concern for how I'm doing, how I'm feeling.
Truth is, my churning stomach wakes me early every morning. I told him how worried I am about what's going to happen to me. How will I take care of myself? What if I can't work and continue to pay the bills? Will I lose my hair?
"Don't get too far ahead of yourself," he said.
Ironic, coming from the King of What-If, but sage advice nonetheless. I do have to keep reminding myself....
Sunday, June 17, 2007
A phone call from one brother informed that he’d spoken with his institutionalized twin and given him my phone number. A few minutes later the other phone rang. It was the brother completely devoid of social skills.
“I just heard you have cancer. I wanted to call since I don’t know how much longer I can.”
True, there can’t be many lives more empty or bleak than his; wheelchair bound, alone, rarely venturing out even onto the hospital grounds for sun and fresh air. Still, his complete lack of empathy was more than I could stand. “I’m not dead yet,” I bristled, and ended the call as quickly as I could.
“He’s limited,” my nephew points out.
Limited is a good word for it. He’s frozen in his limitedness, and I suppose it’s futile to expect anything from him at all.
But it wasn’t always so. He was a boy with limitations, but also with humor and spirit and some desire to participate. Where did that get lost? Why did he give in so completely to his victim status? Was there a key point when he could have turned back from blame and bitterness and taken some interest in his future? I’ve got my ideas about what external forces undermined his sense of self and responsibility, but I can’t help but feel he dropped the ball and gave up on his own life.
I’ve long felt he takes perverse pleasure in doing and being nothing. It’s as if he’s saying, “See, I told you, I really couldn’t get past this.” For him it was literally “all” or “nothing”. It’s the ultimate form of stubbornness. In holding up his failure for all to see, he’s robbed himself of any good feelings he might experience from struggling to come up with something he could do.
Saturday, June 16, 2007
I'm waiting to get scheduled for that next test, a PET scan. It's a CT scan in conjunction with an injection of radioactive glucose. "Hot" cells absorb the glucose more readily than regular cells and light up from the radiation, so the docs can see where else the disease has migrated. My doctor needs the results to recommend a course of treatment.
The insurance company is haggling over whether to allow the test. They think they know better than my doctor just what constitutes valid treatment.
“Is there some way I can put pressure on the insurance company to help this situation along”, I ask the office admin. She tells me no. They haven’t denied the procedure. She’s faxed over all supporting documents and they are reviewing it. Unfortunately, she has to deal with this kind of shit all the time. If she gets the approval today, she can schedule the scan for the weekend.
And in fact she did!
Rosie’s an angel. She sees patients’ anxiety firsthand, and sees the unconcerned way the bureaucrats toy with their fates. My doctor friends are continually frustrated by those pencil pushing drones. But she does know how to get things done. Thank you, Rosie.
I have a Sunday afternoon appointment for the PET scan, and will see my oncologist the next day. I feel better already just knowing I can start to schedule other parts of my life.
Thursday, June 14, 2007
Beyond the small core of people I needed to tell immediately, there’s a much larger group of family members and friends I want to contact to let them all know what's going on with me, but so far I haven’t been able to do that. I'm in such a state of confusion and limbo. In my head I go through the motions of making the calls and I get stumped when it comes to what to say. The information just isn’t there.
I envision making a host of emotionally charged calls, only to have to go through the process all over again when I find out something more concrete. So I haven't yet. But there are people who know, and they are telling others. I’m grateful that they’re willing to share the burden of spreading my terrible news, but now I’m worried that the news will reach some I wanted to reach first.
For those of you I haven’t spoken with yet, I apologize. I’m not sure how much talking and second-guessing I can stand before I make myself crazy. Or make you crazy. I will use this venue as a place to post the facts as and when I know them.
And I’ll include what I can of my thoughts and feelings so we can individually decide how and when and whether to get in touch. In some cases that decision won’t be any much easier for you than it is for me. Cancer makes everyone uncomfortable and if my condition stirs fears in you that keep us apart, you’ll still have this space to find updates when you want them.
Wednesday, June 13, 2007
I woke up crying. Today’s the day I’m supposed to go to the bank to arrange funding for my new business.
Two months ago I found a business venture I want to pursue. I met a man at a trade show whose company helps individuals set up their own businesses providing coffee service. The product they sell is high-end, high-tech machines that grind coffee fresh for each cup of espresso, cappuccino, or American coffee they brew. The coffee coming out of those machines is superb. The machines are flexible in a lot of respects, and equally flexible is the manner in which each “operator” runs his business and interfaces with client sites.
I like it. It’s simple. The time and effort commitments are clearly defined and the outcome promises cash flow, profit, growth, and fun. In all, so different from the brain-draining computer work I’ve been involved in for nearly forty years.
At this point though, I simply don’t know what to expect. I have no idea how to factor “start a new business” into my current situation and mix of emotions. I won’t see my doctor until next week, when I’ll learn what treatment options are available. I don’t know if I’ll need surgery, or some course of treatment that will consume my time and sap my energy. How do I evaluate what it means to fund a new venture, to co-borrow money at this time, to commit myself to service I may not be able to fulfill?
I live alone. My friends and family are scattered and I have no business partner. This venture has to go on hold for the time being, but I’m really bummed about it!
Tuesday, June 12, 2007
The first sign of something amiss came in April, five years after my initial encounter with melanoma.
In 2002 there was surgery to remove that awful invasion of my skin. Pathology tests of the lesion and sentinel lymph nodes revealed no signs of lingering cancer at that time. The oncologist who’s been following my case ever since has prescribed annual follow-up CT scans of head, chest, abdomen, and pelvis. For four years, my appointments with her have bordered on giddy. She’s been thrilled to see me remain cancer-free, and I’ve been secretly delighted to know myself as the healthiest patient in the Cancer Center.
Until year five.
“We have to talk about your scans,” she said soberly. “There’s something in your lungs that wasn’t there last year. It could be nothing, but we can’t ignore it.”
She sent me for a pulmonary biopsy to get more information about a condition I convinced myself was nothing. I was cancer-free, after all. I had a serious bronchitis about three years ago, and seasonal allergy-type symptoms ever since. The lung crud must be related to that. Maybe it was asthma, or TB. I’d worry about what it might be when I got the news it wasn’t cancer.
Instead I got the devastating report from my oncologist this evening. The results were a long time coming. The pathologist had sent my cells out for “additional staining”, clearer delineation. It was nearly three weeks before they came back with a verdict.
“They say it’s melanoma,” she said.
“You’re kidding,” I said, disbelieving.
What a stupid thing to say! What doctor would call and joke that her patient has cancer? Where is my head?! I feel myself sliding into numbness.
Monday, June 11, 2007
In a recent New York Magazine interview, Tina Brown, former Vanity Fair editor, characterizes them as having “too much voice”. Precisely my feelings: more personal interjection than necessary or relevant. Why would I want to involve myself in the most personal details of some stranger’s life? And by extension, who would be interested in the ickiness of mine? What sort of morbid curiosity drives a person to even show up and look? (Although admittedly, I’ve peeked where I wasn’t invited on occasion…) How could I share the most intimate parts of me with an unknown audience, the parts of me I might not want to look at myself? Is this a way to force me to own up? Is this what writers go through in getting their musings into hardcopy?
I’ve been writing in my head for years. Maybe blogging is a way to organize and make sense and yes, share with others. There are people who care about me; I know that. Maybe they want to know and don’t know how to ask. Maybe I want them to know but don’t want to endure endless repetition. Can I share my news without dissolving into emotionality? Will my terror terrify, make others want to run from me? Will my dispassionate moments prove even scarier for those who wonder why I’m not falling apart?
Can I keep straight who I told what and when? Can I control how they interpret my words… or lack of them? Is there discomfort for the listener hearing the same thing more than once? And what if I forget to tell a crucial point to a crucial person? They’re then left with their own speculations and worries and wonderings.
And to top it all off, there’s the confusion. I just don’t know enough about what’s happening to provide an accurate description. There’s a big dark cloud in the space where I’m supposed to have a plan of action.
Maybe posting will provide a way to communicate. And some uniformity to what gets said. It’s not a substitute for real contact, but could be a jumping off point to just that.
I’m sure there are others out there too who I’ve never met who may never have heard of me but might find their way to these pages. There are undoubtedly people going through similar ordeals looking for outside confirmation about their own thoughts. People who want to know what they can expect when or if they find themselves facing these issues. There are caregivers and patients, devoted friends and family members, estranged parties who simply don’t know how to integrate the bad news or re-establish contact, people with various degrees of involvement who want to know how much or how little to intrude or to help.
So maybe this is a good time to start blogging, to get the dialog started.
I just found out, my cancer has returned.