Wednesday, June 30, 2010
There is a point to all this, I promise.
For the past few weeks, I have been going thru chemo and cursing at everyone riding a bicycle. I don’t discriminate. I am equally crabby toward the pelotons of riders wearing Campagnolo jersey ensembles and those just out for the casual ride. I promise I haven’t driven anyone off the road, but seeing someone enjoy what I felt I couldn’t do anymore made me “sad and mad” as Sam would say.
I’ve never been a truly dedicated cyclist. I just do it because I enjoy it. I’ve done the MS150 in Minnesota (Duluth to White Bear Lake…”Go Bears”) about five or six times in the past ten years. (See? I am a fair weather cyclist…). I like the challenge and the speed and the workout; the rest stops and the camaraderie; the being outdoors and strangely, I enjoy the solitude, if that’s the right word. I process things when I ride. I solve the problems of the world and the problem of – my favorite joke – what to have for lunch.
About two summers ago, I impulsively bought a mountain bike to go with my tri-bike and my road bike. Don’t ask. It’s what I do. In my old age I have acquired a little bike habit. Any day now, I expect to be invited to be “interviewed” for the show Intervention. I can picture it now: Sam and my Mom and a few friends seated on really bad hotel furniture and telling me: “Denine, If you do not accept help today, I will no longer help you with your addiction to Titanium. Will you accept this gift?” I will be sitting there, gloweringly resistant, saying: “Having three bikes in not a problem. I can handle it!” Eventually, I will cave and they will send me to Shifting Gears By-the-Sea. Of course, I will relapse the minute I get my bonus and see some new TREK that is “too pretty” to pass up.
But I digress. So as I was saying: I bought this mountain bike. Not any mountain bike, but kind of a hunkin-funkin mountain bike (see photo of “The Baby”). I have to laugh because taking this thing on the Luce Line trail is like driving a Hummer on a suburban street. When I first went shopping for it, I told the sales guy at the bike store what I was looking for and where I wanted to ride it. He suggested I try out a few different bikes. The first few he suggested looked like the only accessory I would need was a woven basket on the back where I would put Dorothy’s little kidnapped dog, Toto (see photo).
I wanted to say to him: “Maybe I’ve had a rough day or something, but I’m in my 50’s, not my 80’s.” Anyway, I had done a little bike research before shopping and knew which bikes looked “cool” to me. After I spent the requisite time nodding politely about his Almira Gulch suggestions, I just felt I wasn’t getting through so I went to a different bike store.
That’s where I found The Baby. The minute I got on it, I felt instantly cooler. Hard to explain but it was just exciting to ride. And hey: isn’t that what a new bike is all about? Seriously. Maybe this goes to the heart of my addiction. I truly believe that no matter what age you are, there is just nothing more fun or more exciting than a new bike. (I know. I know. Arrested development.). I got a TREK, dude!
So, after weeks of chemo and weeks of silently cursing cyclists who could actually cycle, I was amazed when I felt strong enough and motivated enough to ride my bike on the Luce Line trail. For good measure, I had to strap on one of those portable Saris bike carriers on my trunk – not for the weak of heart – but as I say I was motivated. The hardest part of the trip was lifting my bike on the carrier (this bike may be aluminum but there’s a lot of it).
It took me a little while to get my confidence back, but I did it. I did five miles out and five miles back for a total of 10 miles which did amazingly good things for me – better than any medicine I can imagine. I wore my do-rag under my helmet – the first time I’ve ever gone out in public without The Hair (see photo opp). It made me feel strangely powerful. And as I was riding along, it suddenly occurred to me that I was riding my bike, with no hair and a major illness, and that made me feel lucky. It just kind of hit me. I think sometimes I spend so much time publicly wearing The Hair and trying to look “normal” that I forget that going on a 10 mile bike ride is probably a pretty lucky thing to be able to do right now.
But more than that, more than anything, I felt like Denine was back. In that one small event, I had taken back, wrested, fought, said “screw you” and otherwise initiated a bloody coup d’etat against my cancer. It made me realize that I can’t let this get me down. I can’t “assume” that I will need to hole-up in my house, stay out of the sun (that’s why they make 100 SPF sunblock, right?) and take an extended intermission from the parts of my life that really bring me joy. And as corny as it sounds, that joy feeds my soul. Very important. (Hey Soul Sista.....)
So if you see me on the Luce Line, I’ll be the one on the hunkin-funkin mountain bike whose Bontragers have never touched a mountain. I’ll probably be wearing my new leopard print Buff on my head with my small, blingy breast cancer ribbon earrings and my much-cooler-than-I-am Rudy Project sunglasses from much faster cycling days gone by. I will be the middle-aged crazy lady with the smile on my face who’s feeding her soul while hogging the trail. Beep, beep!
Tuesday, June 22, 2010
When I blog, I try to look on the bright side of things. It really doesn’t take much effort and as I’ve said before, I really feel that there are so many more “positive” things going on right now for me (oddly enough) than just the cancer. It helps that the side-effects from chemo have been very manageable so far. In five weeks of chemo sessions (three cycles), I have only been absent from work four days – including the vacation time I need to take to attend the chemo appointments. (Vacation. That’s a laugh.)
I’ve had a little dizziness, a little nausea and a little heartburn– but nothing too bad. Mostly, I’ve been able to take a pill and feel better. It’s like magic. When I experience fatigue, I rest – and previously, the ratio of fatigue to rest time seemed to make sense and be in proportion to the crime.
That all changed this week. I’m not sure what happened this week. I had my usual chemo appointment last Wednesday and the usual stress and deadlines of my job (turned down “low” because of the cancer), and the usual restful weekend after chemo. The only thing that seemed different to me this week was that I was flat on my back all day Saturday. I didn’t question this, thinking preventive “rest” was a thoughtful, prudent choice. It was only when I got up to get dressed to take Sam to a movie that I realized how much effort it took. I mean, all I did was get dressed. I transferred my body from bed to a seat in my car, and then to a seat in the movie theatre. Exhausting. Are we at the 20-mile mark yet???
Sunday was pretty much the same. A trip to Barnes and Noble. More transferring of myself from bed to car to chair while Sam used a gift card on several DVDs he wanted. How hard could this be? I could do this before, why not now? I want my life back, I kept thinking. Now.
Monday was more of the same, only worse. I slept most of the day and had a hard time sitting up. (This is not good.) I had this feeling that if I could just find the right type of outlet, I could plug myself in and I’ll be all better. The “outlets” I’ve tried include prescription meds, hydration, types of food, sleep and stupid TV. Unfortunately, none of these seem to be working like they used to. I feel like a chemist: if I can just manipulate the right quantities and verify the data, I’m sure I can get it right. At least I think so.
We’re going to keep hitting you. My oncologist warned me about this. I just didn’t believe her. I was feeling so good during the first few cycles. I was basking in the rosy glow of “I Rock” because I hadn’t experienced too many side effects. But she did patiently and kindly warn me. “Keep in mind”, she said, “that you’ll come in here at 100 percent…and we’ll keep hitting you each week. You’ll go from 100 percent, to 90 to 80 percent…and we’ll keep on hitting you”.
I know that sounds a little cruel, but I know she didn’t mean it that way. She just instinctively knew that given my job and my personality and the fact that I’m a mother – I might be a non-believer. And I’m sure this isn’t the first time she’s seen something like this before.
I’m sure I have all the telltale signs of the non-believer: bouncing into chemo in my little suit with my iPad under one arm and my work laptop under the other. From taking the occasional meeting on my Blackberry “in a single bound” to planning my wardrobe to provide fashionable access to my infusion port, I was way overdue for a big chemo fall. And I got it. All I need now is some sawdust and a few shovels to help cover up the mess.
I’m going to keep expectations high. It’s actually kind of funny when you think about how all this works. I try to save my life by agreeing to have all these terrible chemicals pumped into me. The chemicals are “terrible” because they kill good cells and the bad cells. Along the way, I lose all my hair, have no energy, have to apply for FMLA so I can protect my job right in the middle of all this, and somehow – I have managed to adapt to all this as normal. So “normal”, that I am annoyed when I actually have any debilitating side effects and am inconvenienced by having to take vacation time off in order to stay alive. It reminds me of something my mother’s doctor said to her when she complained about her inability to still be active, ski and run-around at 83. I remember him saying to her: “You have some very high expectations for someone who is 83”. This makes me laugh. I guess it runs in the family.
So here’s the good news. I only have one more cycle of what I call “butt-kicking chemo”, then I switch to an easier form of chemo beating. I’ve done three of the four cycles and if I can just get past the next one, it should get easier. (My doctor told me this, I swear). That’s if I can maintain myself at around 75 to 80 percent while I’m still getting hit. But I suppose it’s true in chemo beatings as it is in life, that perspective is everything. So I’ll try my best to keep a smile on my face during the beatings, knowing that they will continue until the cancer improves or until I finally just accept that if you aren’t at least a little miserable during this process, then you just aren’t paying attention .
Saturday, June 19, 2010
Grace 911: Friends, Family, Maury and Zappos
In the past few months of living with breast cancer, I have discovered a few miracles that were right in front of me all along and which have helped me through the uncertainly of this journey.
Friends. Being the independent sort and the Queen of Caregivers myself, it has always been a bit of a challenge for me to let my guard down enough to let others take care of me. I’m sure I have a lot of built-in excuses for this and I’m sure I could spend years laying on a mid-century sofa in some analyst’s office discussing this topic alone.
That being said, I have been so amazed, grateful, rewarded and downright overwhelmed by the kindness and generosity of my friends and colleagues during this journey. Every day is like the evening of the 1985 Academy Awards when Sally Field blurted out “You like me! You really like me!” It is sometimes overwhelming to take it all in appropriately and to feel so “lucky” in the middle of such an otherwise stressful time. For example:
- I have my Personal Driving Team (a/k/a “Awesome Driving Team”) of former OPG colleagues who have my chemo appointments so well scheduled and calendared that is it a near para-military operation. They set this up all by themselves and monitor my appointment needs in case I feel like slipping back into my old curmudgeonly caregiver ways.
- I have a great group of current AMC colleagues who laugh at my bad jokes and listen to every last “TMI” detail of my treatment. This includes a “Chemo Calendar” (similar to a fund raising barometer) to color in my progress toward finishing my chemo (“30% done!”). Some days we talk a lot about what’s going on; some days a little. But every day, it is a blessing to feel their support.
- Of course, there is the famous “dear friend” who bought me an iPad for my birthday. Every time we get together, he helps me upload more and more apps that help me manage my life, pay my bills, goof off (“Bejeweled 2”) and which make my chemo appointments fly by. He even lets me use my iPad for a little while when he’s done playing with it.
- Also overwhelming is the support, good wishes and general “you can do it’s” I receive from friends on FaceBook. I decided to go public on FB because it started to feel emotionally stifling not to. For weeks before “coming out” I receded into silence (not like me). I just wasn’t ready to go public and wasn’t quite sure how to without seeming too needy (there’s that word...). Then I decided to start a blog as a way to cope – and to effectively but gently broach the subject of my breast cancer diagnosis.
Since then, I have probably brought TMI to a whole new level. But it is so gratifying to receive words of encouragement from people I attended grade school with (you know who you are); colleagues and fellow survivors from my years at The Times; and an entire support team of well-wishers and cheerleaders that I never knew were there for me. I guess I just had to ask. Lesson learned.
I thank you all so much and want you to know how much I appreciate the big things and the little things – the hugs, the love, the sitting with me for three hours of chemo, the pie (!), the cards, the chili, the “hey I love your blog”, the “hey, how can I help?”, the pep talks and the general good vibes -- which are helping me get through this with my head and my wig on straight.
Family. My immediate family, which includes my Mom, my son, and truly, my ex-husband Ben, have been a source of hands-on, unconditional support for me since this all started.
- My Mom, who is 84 and has her own health issues, spends her days worrying that she is not doing enough to help me. Little does she know (although I try to reassure her) that the times when I know I can just pick-up the phone and have an instant nervous break-down with her are, as the commercial says, “priceless”. You can’t do that with just anyone. At least I can’t.
- My son, who is 20 and has special needs, has been such a rock in all this; it is just amazing to me. When I first started my chemo, he was the one I wanted a hug from most. I would just hold onto him and cry like a little baby. He would never cave, and always just hugged me back and said “It’s gonna be alright. You’re gonna be alright.” I have no idea where he got this resolve unless it’s just a child’s innate feeling that nothing really bad can happen to a parent. Maybe I don’t give him enough credit. And yet, early on I sensed that getting a big hug from someone who thinks you’re immortal would be a really helpful thing right now.
On his weekends with me, Sam seems to enjoy the role reversal of tucking me in at night and turning off the TV if I fall asleep with it on (frequently). It’s terribly sweet. I always joke about it with him and repeat the lines from the book I Love You Forever which has the grown son helping his aged Mom to bed and repeating the lines:
I'll love you forever,
I'll like you for always,
As long as I'm living
My Mommy you'll be.
Now that I’m bald, he thinks I’m just the coolest Mom in town. When he first saw my newly svelte head, he laughed and said “I’ve seen everything now!”
In addition to the incredible grace my son’s shows in the face of the sudden changes that he sees in his one-and-only-mother, he still finds the time to blow me away with his love. When I least expect it, walking around the house with a camo-colored Buff “do-rag” on my head, he suddenly looks at me and says: “You are beautiful.” I don’t know where he gets this stuff. But in that moment, I am so proud to have had anything to do with raising such a wonderful young man.
- Since my ex-husband is remarried and is totally averse to any public displays of gratitude, let me just embarrass him by saying that he has been there for my surgeries, for my moral support, my urgent “need a Sam hug” runs and a whole host of other unexpected support team duties which I will never truly be able to adequately thank him for. Or his wife, who has definitely signed up for the American Cancer Society’s “Borrow-An-Ex-Husband” program. (Thanks, Kate).
Maury. Who would’ve ever thought that The Maury Show would provide such an important public service? Where have I been?
My friend Amy happened to have the bad luck to call me after I had just made my appointment to have my hair buzzed. Just one “hello” into the phone and she knew something was going on. She listened sympathetically, and then gave me a great piece of advice: “Just stay home today and make it a Maury Marathon Day. You’ll feel better about yourself in no time.”
I never got around to watching Maury that day, preferring instead to just bump into walls and lament the loss of my hair – which had now morphed in my pre-buzz-cut mind into being the perfect head of hair. (Right!) But I did get around to it last week. Here is the series of text messages I sent Amy:
Text #1: “Hi- Just got home from chemo. Resting and watching Maury: “Send in the Decoys…BUST My Cheating Spouse!” Just what the doctor ordered! Lol!”
Text #2: “Favorite exchange so far:
Wife: “I cheated on you.”
Husband: “With who?”
Wife: “Well, I just don’t know his name.”
Text #3: (I was on a roll…):
“Here’s another fav: “Brittany is getting married in a month and she has to know if her fiancé has been sleeping with her mother.”
YOU were right! I am feeling so much better about my life already!!!
I mean, look at the facts: On count one, I KNOW the name of my baby-daddy, and I even know where he lives and see him often. Check. On count two, I don’t have a fiancé, but I’m sure my 84 year old mother would agree with me when I say that although she has certainly been known to appreciate a nice-looking man, she has other priorities in her life right now. Those priorities would not included cat-fighting with her daughter over a dude.
This is all just very helpful in reminding me that breast cancer is temporary but bad taste is forever.
Zappos. What can I say about a store that understands my need for shoes and my need for immediate shoe gratification? Especially now!
This is so embarrassing but in addition to the “chemo craving” shoes I bought and wrote about (and posted pictures of), I bought four more pairs of shoes in the past three weeks. I also received another pair of the “chemo craving” shoes in bright red for my birthday. This must be some kind of a record. I didn’t get them all from Zappos but I did get the last three pairs from them: by overnight mail, fit perfectly, love them all! Yes, God has a funny way of balancing the scales. (So a big “shout out” to Jesus too.)
Grace. I’m sure this has all been said before, but perhaps not by me. I’m only about half-way through this journey – at least the part I know about and can plan for. And yet, I have learned so much and felt so incongruously grateful as I walk this path. And the miracle to me is that so far I have never had to walk it alone. I thank you all from the bottom of my little Italian heart.
Saturday, June 12, 2010
In some ways today is the final step or the first step in publicly having breast cancer. What a mind blower. I am sitting here watching "The Young Victoria" (she has a lot of hair) with a little turban number on my head. Who would have ever thought?
I had to stay home from work today. I just couldn't stop the waterworks when I realized I had to make an appointment to have my hair buzzed. I mean, I had the new wig and the bag of scarves and the whole deal. Theoretically, I was prepared. But trust me, I'm not sure you can ever be prepared for having handfuls of your hair fall out. It's pretty weird shit. It starts getting all over the place and suddenly you become afraid of your brush. A good friend of mine said, "Being positive is good, but some things just suck." This just sucks.
I had my hair buzzed at a local Aveda salon -- by the same stylist who had done the last cut and color on me (Ashley). I really didn't know what to expect but at least had the presence of mind to ask if they could cut my hair in a more private setting (Ashley's styling station is literally situated next to the floor-to-ceiling windows of the salon entrance. This is really quibbling considering that the entire salon is glass and mirrors surrounded by beautiful 20-year olds with perfect hair). In any case, they assured me that they could accommodate my request for privacy, and Ashley arranged to see me the same day to cut my hair.
Considering my state of mind and how I felt about having my head shaved, I guess I expected that Ashley would drag me into a bathroom and just "go for it". But it was so much more than that. I have to say that everyone --from the appointment scheduler to the guest services people-- were so kind. And Ashley gets to be at the top of that list. They may have been 20 and beautiful, but they totally "got it". When it was time for the big moment, Ashley insisted on giving me the royal treatment: she gave me a shoulder massage, shampooed my hair and took me back to a large, private "styling bathroom" complete with a shower and a tufted, red velvet bench. She asked me to sit on the bench facing away from the mirror because "the electrical outlet is on the other side". If this was a lie, it was one that I appreciated as I really wasn't up to watching the identity I had carried around for 55 years slide down my shoulders strand by strand. I just didn't think I was up to that.
During the hair buzzing "ceremony"Ashley and I made small talk and laughed a lot. I told her that my ex-husband thought I should have some Valium on hand (for hair cutting emergencies like this one), but I suspected that he really just wanted me to get it so he could borrrow some. We also figured out that neither one of us had done this before and I told her that this could mean a new business opportunity for her -- although maybe more of a "long term" opportunity in terms of adding to her clients.
When she was done, she helped me with my wig and styled it. And thankfully, I never had to look in the mirror at myself until I was all put together. This may sound a little psychotic, but honestly -- I was just not ready for that. I knew I would be eventually. But that day, I was just trying to keep all the pieces together. No need for self-actualization or "truth" on that day. No need to see if I look more like the female version of Mr. Clean or Howie Mandel on that day. I guess I figured there's nothing like a little healthy dose of denial if it helps get you through. Besides, I didn't have any Valium. Not yet anyway.
Next: Coping With Bald (and much more information you never wanted to know...)