Wednesday, August 18, 2010
1. Palm Beach, Minnesota. As the weeks of chemo drag on, my skin has become translucent. (I think I saw a movie where this happened to Kevin Bacon. Eventually, he disappeared.) He should have tried his local Palm Beach Tan franchise. About a month ago I got tired of looking at my see-thru skin and jumped into a Mystic spray tanning booth. I figured these chemicals couldn’t hurt me any more than anything else that was going on right now – and these chemicals make my skin feel softer. The color is really impressive and the best thing is it makes me look healthier than I normally feel. It has the effect of positive thinking through skin color. It’s been quite a nice mental boost and helps me redistribute all the money I used on spend on my hair – both the hair on my head and other areas way too TMI to go into --- into a new form of beauty maintenance.
2. Driving Miss Denine. As I mentioned in an earlier blog, I have an amazing group of former colleagues who drive me “to and fro” my chemo appointments each Friday. It’s really just the most wonderful experience, but under the worst of circumstances. I think on every ride, with each “driver” (as they call themselves), we have commented on the fact that it was such a great chance to visit and laugh, but how weird is the occasion? I’ve thought that this would be a great idea for a Broadway play. Each ride is this great connection and an opportunity to share stories and laughs, but underneath, there is this attention to The Moment. To the purpose of the ride. It’s an extraordinary moment in time when you know people are reaching out to you, and in some way, you are reaching out to them too because you are allowing them to help you. It’s an important exchange for everyone.
3. Life After Cancer. I was recently told by a good friend that they have been diagnosed with a long-term, chronic disease. It really made me feel humbled by my own situation. I know it’s not a competition, but it made me stop and think. And although I realize that my condition will be followed for years and there is a chance of reoccurrence, with breast cancer I am largely in an “in and out” mode (at least that is what I tell myself). After surgery, I will not be expected to live with new symptoms or change my life too dramatically. It really made me think about how difficult that would be to accept. And it made me want to give her as much support as she has continued to give me.
4. Pictures of Emily. A few weeks ago, I attended the first birthday party of my dear friend’s daughter. On a lark, I lugged along my good camera to take pictures. I know at parties, I always love to have pictures, but – if it’s my party – I hate to orchestrate taking photos versus enjoying the moment. So it was fun for me to start taking pictures of Emily (who looks exactly like my friend…) and know that her mom and dad would have pictures of the day. Before I knew it, I had taken 86 photos. I’m strictly an amateur photographer, but it just felt nice to focus on this beautiful little girl, the great vibes at her party, and all the people surrounding her with love. It was also highly therapeutic for me: for those moments, I was traveling outside of CancerLand sans passport, doing something I enjoy and in the process, giving back to someone else.
5. Wren Hill Farm Eggs. One of my colleagues is a writer/gentleman farmer (see favorite links). The last time he was in town, he brought me a dozen farm fresh eggs. From his farm to my desk. What is it about eating eggs that haven’t actually been through the Target dairy case that is so intoxicating? It makes me feel like I am one step closer to Michael Pollan and solving the Omnivore’s Dilemma. It also makes me feel like I am doing something so healthy that no illness can touch me. Bring on the farm fresh eggs.
6. IMs From Hadley. I feel bad for everyone who does not have a friend like Hadley. Hadley and I have known each other for years now. We connect by instant messaging more than we do by phone. Some days, we constantly have a conversation going. Other days, not so much. But Hadley is my IM Angel (He’ll kill me for saying that…). I get updates on his life, his workouts, which Louis Vuitton accessories he is currently using, his latest plan for world domination or his thoughts on what would be fun to do next weekend. For my part, I talk about my wig collection, who’s driving me crazy at work, who needs a makeover (me?), who I just broke-up with or got back together with and the latest funny thing Sam just said or did. It’s always a different conversation. Although he has been know to humor me, he will also tell me what he thinks --straight up -- which I really value. The fact that our conversations are so normal keeps me in the moment of my day and away from the drama of how I’m feeling or not feeling and when the next chemo appointment is.
7. Girls Gone Wild Weekends. Last weekend, my Mom and I spent the weekend in Two Harbors, MN (population: 3,277) at a resort on Lake Superior. The trip was strictly of the spontaneous variety, brought on by the feeling of a free weekend coming up and chemo treatments that were suddenly more manageable in the month of August. We first did this trip two summers ago and we entertain ourselves by referring to them as our “Girls Gone Wild” weekends. Our GGW weekends usually consist of imbibing massive amounts of Diet Peach Snapple and unrefrigerated cheese. (We are simply wild!). This trip, I went all out by having an actual cocktail (a Cosmo that had real vodka in it – my first alcoholic drink since May) and getting in a near fist fight with a 65-year old Lutheran man who stole my baggage cart and smiled at me the entire time he was rolling it away.
8. The Calendar. It is August and I am three-quarters of the way through chemo. I can’t believe I started chemo in May. I can’t believe I was diagnosed in March! Because of the impact of chemo on my life and my work, I have come to see the battle against breast cancer as the battle against chemo. I have another surgery scheduled for the end of October, but I barely count that in the timeline. To me, when chemo is over with, so is the most debilitating part of my treatment. I am wildly grateful that I can look back on these months like one of those old movies where the calendar pages are falling to the floor in a fast-forward motion. When all is said and done and surgically processed, I should be as good as new by December. In fact, I should be better than new. Nonetheless, my New Year’s Resolution is to find a new “hobby” for 2011.
Sunday, July 18, 2010
“Our inner lives are eternal, which is to say that our spirits remain as youthful and vigorous as when we were in full bloom."
- Gabriel Garcia MarquezThere are moments of grace and moments of clarity which are all part of the CancerLand journey. Sometimes these moments of grace take the form of people; sometimes they are memories which come roaring back to remind of who I am and what I really want; other times they are simply quiet moments that reassure me that as unlikely as it seems, I will move forward from this experience.
I am already a different person from this experience. But as I live each day, I go through my life as if I'm pushing a shopping cart down the aisles of my life -- making important decisions about what I want in my life and what needs to change. Mentally, I put items in the cart that I know are essential to me – my lovely son, my family, my good friends, writing, being active, being from New York, laughing (“I’ll have a case of laughing, please.”) and many other things which define who I am and who I want to be “ABC” (After Breast Cancer).
I suppose the part of this journey I am still discovering – back to the shopping cart analogy – is finding the aisle in the store labeled: “Future State Essentials: Life, Love, Soul, Being." In some ways, it is the last aisle in the store and the most important one. Something about this aisle makes you feel that your shopping time is precious and limited. And choices are important. At least that's the way it feels to me right now.
I suppose this is not a big surprise. When you are denied some of the basic expectations of your life such as feeling good, being in control of your life, being able to work, and owning your own body and choosing what you want to happen to it, you start to make a mental list of all those things you either want to get back, or want to change when you are strong enough. It goes without saying that you re-evaluate decisions you have made, paths you’ve taken or stumbled onto or maybe you just have more time to think about the personal inertia that got you to certain “locations” in your life.
I am happy to say that I am generally happy with many, many things in my life. But it goes without saying that there are a few choices I’ve made that in hindsight, seem like doozies to me now. I can’t say that I have any real regret in these doozies because they were choices I made at a different point in time with a different set of expectations. But it does make me thankful (in a very odd, ironic way) for the clarity which living with a major illness has provided me.
So here is a random list of things that I want to make room for “ABC”. You will see from the list that some of these are easy, some more complicated, but I see them all as possible if I really want them. Maybe this is my first attempt to kind of “put them out there in the universe” as a way of attracting and committing to things I’ve decided are important to me.
1. I want to find a wonderful man who wants to spend the rest of his life with me. No more well-intentioned but dead-end relationships for this gal. Just like when I was in my 30’s and single and I felt the clock ticking, I feel it ticking in a different way now. Life is short. So much more to do and see and live and experience. If I have a choice, I’d like to do that with a man who feels the same way. Using the “shopping” analogy: No more “relationship clean-up in Aisle Three”. Been there, done that. I want the real thing now.
2. I need to go back to New York City for a “fix” soon. Very soon. I decided some months ago that I was homesick for New York. It started slowly with strange cravings to see the New York City Ballet and culminated in a major heartsickness when I watched the Tony Awards a few weeks back. I haven’t been to New York in about five years. The last time I was there I remember walking down Madison Avenue and looking down and thinking “these are my sidewalks.” I just feel so at home in New York. I love the crazy pace and the crazy mix of people; I take great pride in knowing my way around the city and several of the boroughs. Most of all, I miss Broadway and Lincoln Center. There was something about the great expanse of Lincoln Center and that part of the West Side that always made me feel like it was the center of the universe. As soon as I have recuperated from all this (“ABC”) and I actually have vacation time that I can use for vacation (instead of for having poison pumped through my veins…) I am going to New York for a few days where I plan to hoist a few glasses of champagne with my friends and go see enough plays, ballets and operas to send me into a coma.
3. I want to have another try at running. This being said, I will also need to get in better shape than I am now. However, now that they have reduced the amount of mandatory steroids they give you for chemo, I feel this may be a real option. I’m not sure I have another marathon in me, but I have always wanted to do one of the Disney World running events they hold in January. I’m hoping that maybe one of these days I’ll get there. Hell, even if I do a 5K, it’s worth it to get out of Minnesota in January and end up in Florida. Even if I have to run there.
4. I will do the MS150 next year! Call it “making a comeback” or whatever. I really missed participating this year and now that my company has a team, they can count me in.
5. I want to have a good reason to brush up my Italian. I spent six months on a semester abroad program in Italy when I was in college and I haven’t been back to Europe since. I would love to go back to Italy, but would gladly settle for just about any one of the many countries I have not yet traveled to. Life is short and the list is long.
Maybe if #1 happens, I could travel with The Man of My Dreams to (#2) New York for a few days. We could hop down to Florida for a quick 5K (#3), and then end up doing a bike Tour de Tuscany (#4, #5). A tour through the wine country of France would also work. From my lips to God’s ears. But hey -- I'm open to other adventures I haven't thought of yet as well.
But however it all turns out, these things are on my list. As I begin to get my energy back and I can actually see the light at the end of the aisle, I think of more things for “the shopping list”. Or maybe I should say, I can start to see my life “ABC” – or at least the life I want to create/recreate “ABC”.
I still have a long way to go, but it’s very comforting to me to have dreams, and to focus on the future. One of the things that helps me the most is the knowledge that I’m not pushing the cart toward my dreams alone, and that I am so lucky to have so many friends and family to help me get there.
CAUTION: This blog was written about two weeks ago the night before my last “butt kicking” chemo treatment. It’s not the most uplifting blog, but it does tell it like it is. Since then, I’ve switched over to a less virulent form of chemo and the side effects so far have been much, much less (Score!) By virtue of the fact that I’m posting a “caution” on this post, you can tell that I’m not that comfortable being “Not-So-Optimistic” Denine. But I want to try to be as honest as I can in this journey, for those whom it may help.
When I was young and single and living in New York about a million years ago, my brother got me interested in hockey. He took me to Madison Square Garden, the home of the New York Rangers, and sat me down in one of his two season-ticket holder seats in the red zone. We were close enough to feel like we were practically on the ice and in the game. I loved hockey. It was fast-paced, rough and tumble and in the Ron Duguay years that I remember, the players were very, very easy on the eyes.
One of the things I remember learning from my brother was the unique role of the goalie on the team. “Think about it,” he said. “When a projectile is speeding at your head at 100 mph, your first instinctive reaction is to get the hell away from it. But a goalie’s job is to throw his body in front of it. To attract it, and just take it in the chin.” Or the pads, or the grill, or any other place but in “the crease” or the net. I think this is what he was trying to say:
"Any discussion on hockey goaltenders must begin with the assumption that they are about three sandwiches shy of a picnic. I can prove this. From the moment Primitive Man first lurched erect, he and those who came after him survived on the principle that when something hard and potentially painful comes at you at great velocity, you get the hell out of its path. Goalkeepers throw themselves into its path. I rest my case."
I thought of this wee bit of hockey learning a lot this week because that’s what I’ve felt like: chemo goalie. Exactly a week ago, I had to sit in a leather recliner and take a friggin’ puck in the chest for 3 ½ hours. I dreaded going. I dreaded being there. I cried as the chemo went into me. And I tried to think of any excuse or escape that I could to just not have to go. It was agonizing. Like the goalie who is waiting to get hit, or the stupid teenager in the fifth remake of the horror movie where you know she’s going to end up strapped to the chainsaw table, it’s just so inevitable and awful.
I have to admit that I have a really bad habit of being optimistic, but this week was really a test for me. It still continues to be a test. I am mightily struggling with this journey right now. I am upset by how bad I feel and how much I’ve had to struggle just to get by in the past week. I hate feeling like this. And the truth is, as much as I am trying to take care of myself right now, there just is not enough Prozac in the world to make a difference. It is really a mean kind of endurance that you need to build up in order to survive. It is a take-no-prisoners and get-the-hell-out-of-the-way kind of survival.
In honor of my goaltending status and all the goalies that have gone before me, here are a few thoughts:
• "There is no position in sport as noble as goaltending"
- Vladislav Tretiak, former great Russian goaltender
• "We are the sort of people who make health insurance popular"
- Terry Sawchuk, former Red Wing goaltender
• "In Biblical times, I stoned people to death. Now they are repaying me by hurling pucks at my head"
- Giles Gratton, former netminder
• “Goaltender is a normal job. Sure. How would you like it if at your job, every time you made the slightest mistake a little red light went on over your head and 18,000 people stood up and screamed at you?"
- Jaques Plante, goalie
• "Playing goal is like being shot at"
- Jaques Plante, yet again
I know that my chemo beatings are going to get easier from here on out, but I have NO IDEA how I am going to be able to do this until October 1st. Lately, I have been raging on a daily basis at the idea that I must continue this treatment for 12 more weeks. I must have transitioned from that stage of denial and bargaining to anger and maybe that’s a good thing. I think I will need to use this anger to get really pissed off and keep fighting as hard as I can. That’s about the best thing I can think of or the most positive way I can think of to funnel this anger into something constructive.
Post Script – This past week, I had the good fortune to have an honest talk (e.g., mini-nervous breakdown) with my wonderful doctor and the wonderful nurse who runs the cancer support group. I think this may be a great time to talk to other women going through this and I plan to attend the next support group. The other realization that came out of their great care and good listening skills was the word “commitment” and how much commitment it takes to go through this process and keep coming back for more. (I suppose that’s another thing that cancer patients have in common with goalies.) That stuck with me and it was comforting to think about this in the context of my commitment to my health – even when it clearly sucks to do that – and to just do my best to keep showing up and getting it done. Onward and upward...
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...)
Sunday, May 30, 2010
Anyway, during those four hours I was lucky to have a good friend at my side who was the perfect chemo companion. Although we had never really been through the experience of chemo, either together or individually, we hit a very nice balance between talk and silence, cheering and just being, normalcy and realizing that this was anything but a normal day.
Time passed rather quickly. As each oncology nurse came by to administer another bag of something or other, my friend and I would just nod and recite our new mantra: “One bag at a time”. That is how my life is being measured now: one bag at a time.
The days after Cycle One remind me of the days when I used to run long distances. Every footstep is a confirmation that you're either doing great or it's time to walk a bit; time for a water break, or time to try to take your mind off the pounding your body is taking by talking to the person slogging along next to you. You have miles where you feel fresh, miles where you slog through based on sheer force of will, and miles where you suddenly get a second wind and you know you will reach the finish line. But you never quit. You just keep trying to push through so you can say "I finished". The only difference with chemo is that you have to keep doing this same race over the course of twenty weeks and they have free cookies at the water stops.
As of eleven days ago, I am no longer a chemo-newbie. The acute symptoms and acute fear of those first few days have been logged on my chemo odometer and I’m ready for the next cycle. These are the sweet days of chemo because I am feeling good. Which is to say that I can almost pretend I’m not going through this and life is temporarily back to normal. And strangely, I am happy.
In three days, I go back to the chair, the ice chips and the free cookies and another cycle of hoping that I will get myself back again soon.
Thursday, May 27, 2010
1. I Shall Maintain My Roots. The first cycle of chemo caught me with skunk stripes and badly in need of a haircut. For some reason, I started thinking “it’s just going to fall out anyway”. Wrong! I impulsively went to a new salon last night and got my hair cut and colored. I am a registered hothouse flower and chemically-processed girl. My body needs these chemicals just as much as chemo, maybe more. In other words, as long as I have hair, I’m gonna take care of it.
2. I Shall Not Worry About the Wind in My Hair. Hey, if I still have hair at the end of this I will count my blessings AND roll down my windows. This includes riding around in wind, rain or fog with my sunroof open. Nuff said.
3. I Shall Soak Up Every Ounce of Life that Life Can Offer. A little while ago I finished cleaning my house. I did this after a long, tough day at work and it made me profoundly happy. While I wasn’t skipping around the living room in a French maid’s outfit humming to myself, there was something so honorable about being able to clean my own house and take pleasure in doing so. That I did it after a truly awful day at work helped me add balance to the day. That I was able to do it at all made me feel “in control” – one of the first things to fly out the window when you are diagnosed with breast cancer.
4. I Shall Just “Go With It”. Being diagnosed with breast cancer is a lot like being kidnapped. At first, there is shock and disbelief and denial. You fight and resist and try to get away. You hope that your experience in Breast Cancerland and the decisions you will need to make will be short and sweet. And then it happens: you join the club. You get a lot of things thrown at you quickly and you have to adjust. Just like Stockholm Syndrome bonds a kidnap victim to their captor, breast cancer starts to seem “normal” and you adjust to the ride. Words that were unspeakable weeks before – words like “biopsy”, “port”, “mastectomy”, “reconstruction” slip out of your mouth like nothing. No reaction, just the facts. I told my Mom that sometimes I feel like I’ve become the breast cancer equivalent of Patty Hearst: one day I’m minding my own business living my life and the next day I’m holding a machine gun in a hospital. I’m wearing a beret and the doctors are calling me “Tonya” as I demand a biopsy, several lumpectomies and a power port.
5. I Shall Respect My Chemo Cravings and Indulge Them. Since my first cycle of chemo, I have had some really weird cravings. A friend of mine remarked that the chemo might have disturbed my “cellular memory”. While good cells and bad are being killed by the chemo, the "day after" shot of neulastin creates new baby cells which are still crawling and trying to figure things out. My body is now a mix of ancient cells and new ones. It's like dusting under the bed after 54 years. All my stuff is now free-floating around in there and just trying to figure out what it really wants for lunch. Some of my recent cravings have included:
a. An urge to make oatmeal raisin cookes. I haven’t made cookies since 1985.
b. A sudden impulse to buy wacky-looking-but-sensible shoes (“Wolkys”). Have you seen these? I love mine but every time I wear them I feel the need to say “I like MEN. Really I do.”
c. Drinking V8 juice.
d. See #3, skipping around in French maid’s outfit while I clean my house.
6. I Shall Be a Mother to My Son, Always. About four days after my first chemo cycle, I bought a computer desk for my son. It was your basic $99.99 desk from Target that I had to lug home and put together. Looking back now, I realize that I needed help with every part of getting it from the store to my car to my house. After finally getting it inside, I had to assemble it in stages (I think it was all of six pieces) because it seemed very exhausting at the time. Once I finished, I set it in his room, all ready with his new computer. Every night for a week I would just open the door and look at it, so happy and proud that it was done and complete and ready for him. In retrospect, this behavior seems a little strange to me. But I realize now that no matter how old Sam is (he’s 20 now), I will always be his Mommy. And I can’t think of anything more essential or true or necessary to my life force than to know that I can still take care of him in the middle of all this.
More to come...
7. I Shall Continue to Nurture Others and Let Them Nurture Me
8. I Shall Enjoy My Good Days (and Bear Up Under My Bad Days)
9. I Shall Keep My Sense of Humor
10. I Shall Remember How Lucky I Am, Always
So here’s where I’m at. I have breast cancer. I guess the ins and outs of it don’t really matter. I spend a lot of time talking about ‘my first surgery” and “my second surgery” and what the first surgery was supposed to do that it didn’t – which was why I had the second surgery in the first place. I sometimes think that this maze of health care “dates” keeps me from thinking about the real issue. The real issue is that I have cancer and if I don’t keep making “dates” for surgeries and chemo and radiation, I might die. Honestly, I don’t think about that very much. I just try to keep going and keep “doing” which makes me feel productive. Like I’m trying to chase the cancer away through sheer activity.
The day before my last surgery I got really upset. Breast cancer is a weird thing. You can just go through your normal little life and almost forget you have it. In the early stages, you don’t look different and you don’t feel different. You go from appointment to appointment and you can kind of kid yourself into thinking that you’re OK.
I just wanted my body back. It’s like a game I play with myself sometimes when I try to imagine a different season than the one I’m in. Maybe it’s a fall day, but the sun is shining and it’s just in between warm and crisp and you can almost convince your senses that spring is just beginning. Breast cancer is a lot like that. You try to stay in a your routine (a good thing). Then you realize that you have surgery the next day, and you’ll need a few days of rest and feeling helpless and more than anything, wanting your body back without the drains or ports or steristrips. The way it was before all this happened. And suddenly, you know that fall is here and no way is it spring time. You’ll just have to deal.
I find that as I keep going down this path, things change for me. I am less afraid. The more I am exposed to, the more it becomes normal, part of my routine. Tonight, I am going for a consultation related to a “cranial prosthesis” (a wig). While I can’t even imagine having the courage to be a woman who would be proud to be without hair, I have this strange feeling I will get there. I am already thinking about what-in-the-world that journey will be like and trying to appreciate it.
I told my friend about someone I met at the Humphrey Cancer Center. It was the day I learned that I would, indeed, need chemo. Wouldn’t you know it? I was having a perfect hair day that day. The news shook me. I somehow had held out the hope that I would be different and wouldn’t need chemo. As I sat in the lab giving yet another blood sample, a woman my age came into the lab. She was dressed in casual clothes, shiny bald with a baseball cap. Our eyes met: “Is that your hair?” she said. “So far”, I said. “My hair just fell out this morning so I just went with the baseball cap”. I smiled at her and said “Well, just check back with me in four weeks. We’ll see who has hair then” and we both laughed. Although this seemed to be a horrifying glimpse into what was in store for me, I was so moved by her courage to just be “out there” being herself. I so admire that and hope that I will have the same combination of grace and humor and acceptance that she did in that moment.
I am still amazed by the support of my friends and family. In two months, I have gone from worrying about whether or not I have breast cancer to worrying about whether or not I will need a third surgery after chemo. The very idea that I was so upset about getting an IV port a few weeks ago kind of makes me laugh. I have one now and it seems like nothing. Sometimes I pretend to “infuse” a diet coke through it; sometimes I call it my “room service button”. My friends and family laugh at my bad jokes, support me when I get a dark cloud of worry over my head, and humor me incessantly -- which really is the best medicine of all.
Difficult breasts. Six weeks ago I went and had a routine mammogram. I usually have mammograms every six to eight months or so because -- no lie -- I have been diagnosed with "difficult" breasts. (My surgeon told me this. We laughed. She didn't think they were really that difficult in person. Just on paper...). This time I had waited a little longer than usual -- about 16 months. But I hadn't felt anything unusual. It was just a routine checkup.
Ultrasound, no biggie. When I got called back for an ultrasound, I wasn't too concerned. This happened frequently after mammograms -- although it always felt like I was tempting the gods somewhat. No one wants to fly that close to the sun...
First, I cried. When the doctor clumsily told me that I needed to have a biopsy, I cried a lot. I was terrified. I had to wait 2-3 days for the results. During that time, I made every bargain I could think of with God. I vacillated between being sure I didn't have it and being sure I was a goner.
Then, I was calm. When I finally got the call, I was actually calm. I launched into project manager mode and started to think about my treatment in a "linear" way. If I could just check off the boxes -- surgery then radiation then "I am well" -- I would be fine. I insisted on using the words "early", "small", "non-differentiated" to describe my diagnosis. That kept me going for quite a while.
I had moments of intermittent terror. But the amazing kindness and outreach of friends and family really helped me -- especially through the first few weeks while I tried to get my treatment plan on track, the decisions made, the surgery scheduled. During that time, the cancer rarely made me cry. But the overwhelming kindness and caring words of friends just broke me up.
A few surprises. When I was first diagnosed, I was at Stage I. After my surgery (I had a lumpectomy) on April 6th, I was diagnosed as Stage II because of the size of the lump (2 cm) and the fact that one lymph node was involved. Originally, I thought I would be a "surgery & radiation" patient and now I find that I will most likely need chemo. Chemo doesn't seem bad at all compared to running out of "stage" numbers (there are only four: I, II, III, IV).
It's not a "check box" kind of thing. I am hoping for no more surprises, although my doctor assures me that this is the course of typical treatment: it's not a check box kind of thing. I realize that now and have realized that the ups and downs and mood swings (from uber strength to abject terror) are all part of the journey.
For my next trick. I never wanted to be here, but feel very, very lucky to be in one of CancerLand's best neighborhoods in terms of prognosis. I have gotten through surgery. For my next trick, I will try to get through chemo without being too awfully terrified. Or maybe, I will allow myself to be terrified -- which is truly terrifying.
It's amazing what scares me. It is so amazing to me the things that become clear on this journey, for example: I am more uncomfortable with asking for help from people than I am of chemo; that I am more worried about losing my hair and looking like a dope than I am about dying. It's like that statistic you hear about people being more afraid of public speaking than dying. I guess it's all about what you can actually imagine happening to you and what you can't.
Getting to know you. Tomorrow, I meet my first meeting with a Radiologist. I probably won't have radiation for several weeks/month but this will be a "baseline" visit. Next week, the real fun begins when I have my first meeting with my Oncologist. Again, I am strangely less afraid of the chemo than I am at the idea of having a "port" (for infusions). But as I say that, I realize (logically, that is) how ridiculous that is. Or maybe, as a good friend suggested, my reactions and emotions are a normal response to an abnormal situation.
A thank you to friends and family. It's difficult to truly say thank you enough to friends, family and colleagues for helping me to stay sane and laughing, during the past few weeks. I am so appreciative of the care, concern and just-plain-friendship that has been extended to me. I know it will help me through this, and it already has helped me and Sam get through this "first part".
What I can give back. The most important thing I hope I can give back to friends, male and female, is to ask them to go get a routine breast cancer screening. Make the time and just do it. Hope there is more I can pay forward as I go through this journey but hope this helps even one person...