Ok, so now I’m a posterchild for Fox 13?? My friend Hope decided that since I’m the only person she knows with breast cancer, I should talk on camera. Hmmm. It took a while for me to say OK. Not because I don’t think I have a worthy story but I wasn’t sure if I wanted my agent, my ‘outside’ friends, those who don’t know me but will, to know. Cancer is an extremely inconvenient disease. It may not be debilitating at the moment for me but it interrupts my life flow. It turns what was once easy (humming along day to day) into something difficult and it pisses me off. I really don’t want to come across as bitter, angry, spoiled or negative. Hope said I was great. A great interview. Of course I was. Broadcast is my thing. It’s the message I worry about. I guess I’ll just have to wait and see. The piece is set to air before the Cancer Walk on Oct. 9. As for the rest of my life. Peace has resumed. I’m back from San Diego which turned out to be much less of a vacation than I had hoped. Sage was like the fricking Energizer Bunny and I had no one to hand her off to. It was all me. No daycare, no sitter, no friends. My parents just shook their heads and turned away. That doesn’t mean I was disappointed in them. Hell, if I was in a room where a kid was acting like Sage, I would love to walk away. It’s just that I couldn’t and she wore me down. Which in turn stressed me out because damn it I’m supposed to be doing what I can to get better. Stress does the opposite. I also made the terrible error in judgment thinking that it would be fun to share a room with my daughter. Next time, she goes someplace else. At least then I will get enough sleep to handle the stress of the day. I came home to some killer fall Park City weather. It’s 83 outside with a cool breeze and vibrantly blue skies at 5:45 p.m. I lifted today and tomorrow I’ll try to hike or climb. Best to enjoy the weather before it gets rainy and muddy.
In between debugging my turtle of a laptop (thanks, Vista), I find myself constantly combing through stories of celebrity cancers. Are they dead? What did they have? What stage was it? Was it something complicated? Could it be me next? I can’t help myself. It’s like watching a trainwreck; sometimes I’m the trainwreck itself. Last year, it would barely be a blip on my radar. This year it means something.
Patrick Swayze gone. The news stimulates the hunt for answers. If it weren’t for the obnoxious hematoma/bruise left in the crook of my arm by Nurse Ratchett in the Hunstman Infusion Room, I wouldn’t know I have just had my second round of chemo. So I have to keep comparing my ‘story’ with others’.
The only side effects I had from the first round was hurling Chinese food the night after doing Eskimo rolls at the Ogden Paddle Fest; and the runs one day about a week later. Hair, check. Period, check. Energy, check. Pain free, check. Appetite, check. In fact, I’m stronger than I’ve been in months thanks to Patrick, my Huntsman personal trainer twice a week. It was actually pretty fricking cool that I had three weeks of no doctors’ appointments and no tests for the first time in two months. It was almost like the scare was gone. I did the next round of chemo last Friday and suffered even less. I actually sent emails to my oncology doctor wondering if he was dosing me with a placebo or something. I couldn’t believe that I had no dramatic reaction.
Just to prove I wasn’t hallucinating, came Round 2. Talk about “pinch me I must be dreaming.”
The stint in the arctic Utah Olympic Pool the day before sucked the buoyancy out of my veins. Even after warm wraps, three liters of water and a Lorzapan, nothing. They couldn’t find a vein in my right arm anywhere. So they called in the big guns- a grey-haired grandma that yelled “stop it” as she unsympathetically shoved a needle into my arm prompting a terrifying cry to escape my lips. I bit them and the tears developed. The pain didn’t end as she continued to shove. “Don’t”, “Stop it,” she said again sharply and sternly. Apparently screaming as you are tortured like a drug smuggler in Turkey will freak out the other guests of Chateau Chemo. Suzanne Sommers blames the chemo treatment for Patrick Swayze’s death not his pancreatic cancer. Chemo can cause all sorts of nasty side effects like stroke and leukemia.
My T-Cell count was low on the day of chemo. I was sent back to Huntsman for a Neulasta shot on Sunday. That’s to stimulate your long bones like a femur to produce more white cells. Scary. I feel fine but I could still wind up in the hospital with a deadly infection faster than you can whip up a PB&J. They told me that because the count is low to avoid contact with ANYONE- including Sage and Ryan- until I get my shot. And here I am going to a Pig Roast outdoors with a bunch of snot-dripping toddlers who are drinking from Sage’s sippy cup and falling on her in the trampoline. One guy there tried to talk me into a drag on his joint as if his next paycheck depended on it. Of course, I said no. Ryan on the other hand, seized the moment. The next day he complains of achiness all over and chills. So I sleep in my office for the next two nights to avoid catching something. I got the shot that morning on my way to the climbing gym. They warned me of deep bone pain as my marrow regenerated TCells. Never happened. Another placebo?? I did feel quite blah on Monday but chalked it up to PMS and the Park City rain. Today, I’m up at 7 a.m. and off to Legoland or Harbor Days in San Diego.
I know I’m not playing some character in a movie where everything is a prop and I can go home at night to a reality that existed before the diagnosis but I can’t help wondering whether everything I’m going through is really working when I feel fine. Silly, I know. I should be thankful that not a soul can tell I have cancer; not even me. I shouldn’t need to get rushed to the hospital to know I’m taking care of myself. That’s just wrong.
P.S. Anyone who tries to tell you how they would want to be treated if they had cancer is full of shit. You don’t know until you actually have cancer.
Cancer is unlike any injury, illness, tragedy you will ever have in your life. It hasn’t made me a “better person” – I can still be a big bitch – but it’s made me part of a tribe. I have a deeper understanding of what my brethren go through and a huge irritation for those who assume to know.
Thanks to my friends for dropping food at my door and taking Sage for a couple of hours on some days. That truly helps!
It’s midnight and I’m scratching my head. I must have missed something right? I know that movies and the WE Channel often exaggerate but after three hours of chemo at Hunstman today the only thing I feel is relieved and suspicious; also a bit anxious because I know CMF can’t be this innocuous.
That’s what Dr. Ward prescribed. A cocktail of cyclophosphamide, methotrexate and fluorouracil, which is also known as 5FU (my dad said that one used to be used to grow hair!). Ward choose this path because of the less severe side effects- a strong chance of hair thinning but not falling out, no neuropathy (loss of feeling in toes and fingers which can be permanent in some people), less nausea, no bone pain. Like a walk in the park, right? Both Ward and his assistant Rosie reassured me that given my age, physical conditioning and vitals, I was going to be one of the lucky ones who sailed through this pricky business.
I can’t be easily convinced, however, especially not after meeting with 12 women at the Image Reborn cancer retreat who hosted a little show and tell of chemo horror. You would have had to physically walk over and lift my jaw off the floor to get me to shut my mouth. But what can you do? You go in with all of the ‘what ifs’, hope they won’t come true and you jump in. I wanted to get in the race. For three weeks now I’ve had thoughts of ‘treatment’ keeping me up at night. I thought after last week, my labs, my appointment for today, that I was all set…..until I wound up with bronchitis. Sage is sick too and Ryan’s coming down with it.
Of course they would postpone my treatment. No such (bad?) luck! We were still a go. They made the call because I didn’t have a fever or chills and was seemingly on the mend. We’ll see what happens now.
Nausea and anti-nausea prescriptions in one hand, turkey sandwich and fries in the other, I marched down to the infusion room. I couldn’t have asked for a better seat than the forest green leather Lazy Boy, Chair 10. Tucked back in the corner, I was away from the other chemo patients and their small talk, close to the toilet and the snacks with a closeup view of the construction going on outside the hospital (better than having to face the nurses station for three hours).
Nurse KOD (seriously, because there are three Karen’s on deck) gently stroked my right hand and told me how much she was going to like my vein. Interview With a Vampire briefly skipping through my brain. She told it was perfect for the IVs, should go the six session distance (every three weeks) without imploding and safe bet I wouldn’t need a chest port for the infusion. A port is a thin plastic tube which is inserted under the skin into a vein near the collarbone (central line) to feed the drugs straight to your heart. Cancer patients love their ports because there’s less vein poking and pain at each session. But with three weeks in between each dosing I’d rather take the needle than have a baby carrot sized scar on my chest.
At this point, I insisted on an Antivan- anti-anxiety chewable to relieve dizziness a strong possibility for me when I’m jammed with a needle for an extended period of time. After the initial ah ah ah crescendo that turned a few heads, the needle was in and I felt nothing more. First drip the anti-illness drugs; then the 5FU which can cause cotton mouth and cold sores. (I’m directed to suck on ice chips to hibernate my mouth and make it less susceptible.) Next, methotrexate which will turn my pee yellow (how about purple? I ask, that would be more interesting.) I’m told to flush twice after every potty break to keep any of these toxic secretions from jumping onto skin. Even Ryan must wear a condom or wash immediately after sex. He asked me if I minded him visiting a hooker. I also have to be super duper careful about catching even a tiny cold so I told him hookers will have to wait until after chemo.
My white cells will go down and down and down the further into treatment. Not a good time to get sick. I worry about this the most because I get colds easier than catching infield flies.
Cyclophosphamide (Cytoxan) came last. Ths one seems to be the biggest Pac Man of blood cells- good and bad- and the one that leaves you most at risk for leukemia, bladder cancer and menopause. Oh joy. I’m supposed to feel the effects in 7-10 days. This is worse than waiting for BAR results!
The whole process today wasn’t the least bit scary. There were so many nurses and aides talking at me, I never had a moment to fear. Then Ryan popped in after work to sit with me. He also got the crash course on chemo. My mom Skyped in and I showed her around the room, my IV and Ryan waved hello. Two hours later I was done. I walked out, perfectly capable of driving home (but I didn’t have to).
We picked up Sage, went out to dinner then hung out and watched TV- nothing special really. After we got the girl in bed, we talked for a bit about other people, the stock market, needing to clean the house but nothing about today and what we went through. I guess it’s best to internalize for a while. Just take it all in and let it settle. Today was a big deal. On the outside, it didn’t seem anything more than routine and on the inside I don’t feel these drugs killing my little guys yet. But it was a big deal. I’m “in treatment”, I’m “undergoing chemo”, I’m “surviving”. That’s all heavy shit. That’s not what my life is set up to process. Drama yes, heavy shit no. I’m heading off to dream land now before I get weepy but not without nausea meds by the bedside just in case.
At the same time, hurling that 10-pound burrito from Loco Lizard tonight might not be such a bad idea…..
Some of my friends are figuring out ways to handle this too. The one in the earlier blog who ate my food instead of bringing me some decided to distance herself rather than step up. A friend in need is a friend to weed I guess. Ryan’s folks sent a daisy bouquet mixed in with lemons (ie referencing lemonade when life hands you lemons very cute.) Another friend has offered to stuff my freezer with homemade ziti. I’m thinking right around that Day 7 is perfect.
And many many thanks to my ski buddy Louie who rearranged his schedule this morning to drive me to Huntsman. I’m not usually in the habit of asking for big favors that require more than a phone call so I honestly appreciate the effort everyone makes in whatever way they can. Now if I only knew someone who loved to do laundry…..:)
Ok, so now I have a bunch of strangers, checking out my site on an projection screen. Hi, Everyone! It’s part of my journey on Book Passage- a Travel Writer’s Conference. I barely hit my flight yesterday morning and, with heart pounding, I shot down the long, enclosed runway for the puddlejumper to Oakland. Today, I’m rested, fed and my ass’ still sore. But I’m ready to be a better writer. Back to back sessions delve into the travel writing experience and bringing readers along; the plight between travel essays and travel articles; marketing yourself and your website … or not. Stay tuned because after everyone looks at this I can guarantee that it will not be the same in the months to come! No, no, don’t worry. I’m not morphing into a different person, less edgy. less entertaining. I’ll still be irreverent. I’m just updating the site and its use.
At the Image Reborn cancer retreat I attended this weekend in Deer Valley, one of the ladies passed around a sheet and asked us to write down five things that impressed us about our friends and family and five things that didn’t help at all during this time. I flipped to the later section immediately. I couldn’t help it.
After my diagnosis last month, I did have a handful of touching, warm fuzzies:
Right after my diagnosis, my sister sent a beaded bracelet and Green Goddess medallion blessed by the Dalai Lama (?), a t-shirt to wear during recovery and a mantra to chill out with. Some people really surprise you.
But what you remember more are the negative instances. Like Dr. Phil’s quote “It takes a thousand ‘atta boys’ to make up for one ‘you’re no good’; it takes 10 well-placed gestures to make up for one lame one.
When Friends Don’t Show
You’re in the midst of the worst reality you could imagine (unless you or one of your family members has been kidnapped and tortured) and when you call the troops to rally, you expect them to, well, rally. You remember those who don’t. Sad but true.
When I asked my best friend of 10 years for a ride to the hospital for surgery, she picked me up then pulled over minutes after getting on the freeway to ask if I could drive because she was too tired. So technically, I drove myself to the hospital.. in her car. When we got to Huntsman Cancer Hospital she sat with me for 10 minutes then looked at her watch, said she had to go and left.
For the two hours between when my friend left and the parents arrived, I was alone and very anxious in a sterile, uninviting examining room. The nurse entered and asked, “Where are your people?” I don’t think I ever felt so alone. Tears welled up.
The next day, flowers (the only flowers I got from someone other than Ryan) arrived from a old friend in Washington that I hadn’t seen in years. Though we speak every week, by email or phone, I didn’t expect flowers. When Ryan walked into my bedroom carrying the bright blooms, I felt her hand reach out and gently touch my shoulder. “You’ll get through this,” they said. I cried. And it made me even more pissed that my other ‘best’ friend who lives 20 minutes away couldn’t surprise me like that let alone sit with me in the hospital.
I know that everyone has their ‘side’ and their own life drama to tend to but when a friend is dealing with something like cancer…on the day of their surgery, you drink a cup of coffee and put your shit on hold for two hours. On the flipside, my parents cancelled their trip to Canada, got in a car and drove 12 hours to be by my side as they wheeled me off- and then as they wheeled me back. That still brings up tears.
BTW, you think you’re extending the olive branch by saying, “Let me know if there’s anything I can do”? You have to actually do something. Otherwise, it’s cliche like saying “bless you” or “how are you?” We know it’s just something you say, like “Sorry for your loss.”
Drama is Saved For The Sick
Cancer patients aren’t thinking of ways you can help. We’re thinking about not dying, not working, not feeling okay ever again. The heart of the person who asked is well-placed but most patients aren’t going to make much of a generic offer like that. Plus, if we do call later to ask for something, we usually get, “It’s not the right time, we’re really busy, I have to work, the car’s in the shop, I need to sleep or Seinfeld is on, call me next time.”
I can’t tell you how many people I called to see if they could go with me to my first doctor’s consultation before Ryan took the time off work to be there. No one eagerly assumed a position by my side. The “best” friend did go to a consult with one of the surgeons (I saw a total of four doctors in addition to an online panel of medical professionals) but only because it was supposed to be a short one. I was going to go alone but the doctors told me I definitely needed to bring someone because I would be too overwhelmed to think of every question that needed asking or to remember what was said by the doctors. She cried through the whole interview and I felt like I had to take care of her instead of the other way around.
I’m not a victim and I rarely ask for help (primarily because I’m afraid of exactly this kind of thing). I take care of myself. Even Ryan wonders what he can ever do for me. But now I feel like I have an excuse to expect some handholding, cuddling, comfort, flowers, and extra effort. Don’t I?
How It Went Down
The night after my lumpectomy the “best” friend came over with her boyfriend, swept in, exclaimed that they were starving, picked through my refrigerator, made themselves sandwiches, dropped the dirty dishes in the sink and left. I actually thought she was coming to see how I was doing! Didn’t realize I was a convenience store. They gave me a brief hug goodbye and left. No more than 20 minutes. Am I that much of a rock that my friends think this all would be cool with me??
To be fair, it was already a bit chaotic at my house. Another friend of mine had shown up with her daughter for a playdate with Sage. She thought that might help keep Sage entertained while I laid low. it was actually my bad. My friend asked to come visit post knife, and I said, sure, and bring your daughter. We’ll drink some wine, watch a movie, the kids will play…. My parents thought I was nuts but I thought I was strong enough to handle it. it was outpatient surgery afterall.
Her 5yo refused to play with Sage and kept coming into the living room; Sage cried, the daughter fussed, all night long. Not good for a post-op day. Ryan brought food home for everyone and they slept over – less than 24 hours after surgery. Ryan told me later that he wanted to ask her to leave but he was afraid to offend us. I wouldn’t have minded really. But I would have felt horrible too. The whole thing was my idea in the first place. I just didn’t know. I wish she had picked up that we need a break. I spent the entire next day in bed recovering.
I’m sure my friends have no idea I’m disappointed and saddened. They would see their ‘efforts’ as a grand gesture and my criticism as petty. Maybe. I just have a hard time thinking that it’s not all Lifetime Movie warmth for other women when they learn they have cancer. I’m jealous of the support they have.
If friends truly do want to help, here’s my advice: Make specific offers- like scheduling a day to go to a radiation treatment, or take your friend’s child for the hour they’re getting it done or feeling low, or bring them food instead of eating theirs. Force her to go on a hike or climb a couple of routes so they don’t get fat and lazy, take her for a pedicure, read trashy People articles to her. Don’t make her feel like she’s ruining your day- even if it’s your wedding day. Bring a new pillow to prop her up on her weaker days. And, most importantly, if you do make a commitment, don’t blow it off.
How To Step Up When it’s Cancer
Here’s a great example of stepping up: At my Image Reborn retreat some of the ladies said they were in so much pain that the only thing that helped was medicinal marijuana. Yet because they couldn’t bring it on the plane, they didn’t have any. I called an acquaintance. How much? “It’s on us. I’m glad to be able to help,” she said. The collective gratitude from the group was intense. You could tell it was appreciated just by the catcalls as several Rubenesque women ran naked under the full moon at the Deer Valley retreat house.
Share simple pleasures like a chickflick, a cup of coffee, gossip. Don’t talk about medical issues unless she wants to and never, ever talk about other people’s cancer horror stories (we’ve gone over that one).
Your friend is still the same person she was before cancer, she just needs you to be present a little more, both in spirit and body. She needs you to be what friends are supposed to be.
Don’t walk in front of me, I may not follow. Don’t walk behind me, I may not lead. Just walk beside me and be my friend.- Albert Camus
