Debbie's Life-is-bigger-than-Cancer Blog

Identity Crisis

2012-01-09T11:31:00.000-08:00

Lately I have been suffering through an identity crisis. At least that is what I am calling it. Lots of anxiety and discomfort, emotional ups and downs, and the occasional tear or two.

Some of this is due to the more superficial, but none the less weighty, issue of appearance. I look at my aging face and gray hair in the mirror and am not sure who is looking back at me. I feel the need to wear make-up more and more. I feel the need to go back to coloring my hair. I question my choices in clothing and sometimes, when I really choose the wrong clothes, I look like a dude. An old dude. It is either my Grandmother staring back at me or some old dude, this is unsettling.

Then there is work. I am very lucky to work from home and co-own a successful business with my husband. I have lots of flexibility in my schedule. I can run downstairs and make tea at any time. I can show-up for the first part of the day in my pajamas. It is all pretty great. But....the name of the business is my husband's name. He is the photographer. He is the business minded person. I am important, I know that, and he knows that, and tells me that often. We are a very small company so we are both crucial to the operation. But many days it doesn't feel like it is 'mine'. I feel like I am on someone else's journey. Maybe this is just the way I am looking at it right now though. I mean, I am the one who decides what my journey is going to be. I can just as easily decide that this IS my journey as despair that it might not be.

Then there is Motherhood. Once again I am very lucky. I have a daughter. She is healthy, smart, funny, sweet, caring ....and a teenager. I have a degree in early childhood education, I am a smart, compassionate person. But relating to a teenager is one of the hardest things I have ever done, and one I am not doing well on many days. There is nothing that makes me feel more incompetent than trying to do the right thing as a parent to a teen. I don't know how else to say it. I feel like I fail at a daily, sometimes hourly, rate.

And, just to top it all off, a bit of a cancer survivor identity crisis that I didn't see coming. It happened to me before, but I didn't expect it to happen again. When I finished with chemo and radiation after my first diagnosis is when it first happened. It is that time when you (and everyone around you) think you should be ecstatic, so happy and ready to move on. But all of a sudden you feel depression like you never knew existed and confusion and at a loss to know who you are, what to do next and how to move on.

It isn't as bad as it was the first time. But recently I have been finding myself in that similar space. Back in May 2011 I was on top of the world and had a great appointment with my Oncologist. I was 2 years NED and ready for a new state of health and beginning that phase of less scans, less treatments and fewer doctor's appointments. In retrospect I don't know why I didn't see it coming. I think it was masked in that first bit if joy, something I didn't ever feel the first time. But here I am finding myself in that similar place, wondering what I do now. My identity as a survivor is changing, I am moving on. But moving on means letting go and we all know how hard letting go can be, even of something that isn't very pleasant.

So I continue the task of living this life. Of figuring out, finding my way. I'll try to start with just today, just this moment. I can let go, breathe and be who I am, whomever that may be.

The First 5 Year Mark

2011-12-18T06:15:00.000-08:00

Today, December 18th, it is 5 years since I was first officially diagnosed with breast cancer. I am not celebrating, just remembering and telling. I remember the day clearly. I got the call as I had just gotten out of the shower. Tears mixed with the water still on my face as I stood in the bathroom wrapped in a towel. Then I dried myself off, got dressed and went to help out with the Daisy Girl Scout meeting for my daughter after school.

One year later I was thoroughly depressed. Sunk up to my neck in a cancer quicksand pit. I found my way to a therapist and started climbing, scratching, clawing my way out.

Two years later I was experiencing some pain in my left shoulder area. I brought it up to my surgeon and we decided on some scans. My cancer had recurred in one vertebra.

Three years later I was NED (No Evidence of Disease) and taking Femara, shots of Lupron and infusions of Zometa and getting frequent PET scans. Counseling was saving me once again.

Four years later and I was still NED, that was a great thing! Half way through the year I had the best check-up of the past 4 years and was reduced to once a year PET scans. I had also decided to get my ovaries removed, a step towards furthering my wellness and taking some control over my treatments.

Five years later I am still NED. I am taking Femara daily but no more Lupron shots (due to ovary removal) and no more Zometa (due to I had enough for now).

The thing that I have been thinking about is how for the past 5 years I have basically been fighting non stop. It still feels surreal to me sometimes, hard to believe. Or maybe it just became such a way of life for me that it didn't seem out of the ordinary. When I see the scars in the mirror of course I can't deny it happened or that it is in any way ordinary. But I have been lucky enough to be able to focus my attention more and more on my life instead of the disease that was trying to stop my life. There are even people in my life now who don't know I am a cancer survivor until I tell them. My life, and my self... we are about so much more now.

So I remember and I tell, that is important for me to do. But also important...not to dwell. Today I am ready to move on.

Attitude of Gratitude

2011-11-22T10:57:00.000-08:00

If you know me then you know that I have been writing about Gratitude for a while. You also know that on Facebook and on Twitter I start a 'Gratitude Alphabet' on the first day of November. Each day I write about something that I am grateful for that starts with the letter of the day. Obviously you can make a Gratitude list in any fashion and using the alphabet may seem a bit contrived but it gives me focus and helps me think more in depth in some strange way considering that it lends a certain predictability to the list.

What you may not know is that most nights I also write a list of 5 things I am grateful for, for that day, in my journal. Usually I do this right before bed time. When I am 'out-of-whack' and struggling with a variety of emotions from a variety of situations, this simple practice of focusing on gratitude can usually set me right in a matter of days.

Some days, when I am really down-and-out, it can feel hard to come up with 5 things I am grateful for. Just two nights ago I struggled, not so much cause I was 'down-and-out' but because I was so NOT in the moment that day. So when I went to write my 5 grateful things I realized I was struggling, and then I realized why. And I realized I had wasted a day. It could have been a good day but I wasted it being absent, crabby, complaining and what-not.

On good days I could write a zillion things I am grateful for. And as I write those things I feel like the luckiest girl in the world. And I pat myself on the back and think about how self-actualized I am and isn't it great to be me. Then I come back down to earth from my little "I am so amazingly focused and in-the-moment and a little buddha" fantasy with another 'down-and-out' day. The reality is that some days it all flows and other days it all gets dammed up and most days are somewhere in between.

So the things that make my list most often? My husband and daughter are there frequently, almost every night. My bed is also on the list almost every night, especially in winter. Time with a friend or family member that I might have seen that day, or talked with on the phone or online will often make the list. My morning run is also often there, sometimes I mention a friend I ran with, or an amazing sunrise I saw, or a beautiful starry sky and bright moon, or the prayers I chanted when I ran alone. I frequently am thankful for good food that I can afford to buy and enjoy. In the Fall I am often thankful for coaching and the girls on my team. In summer I say thanks for the long days and beautiful waves at the beach. In winter I am grateful for the wood-stove. Lately I have been grateful for all the work we have, work is a good thing.

Giving thanks is such a healing practice for me. I can look back on the day and remember all that I have and all that is beautiful in my life. It doesn't mean I am never sad or angry or frustrated or scared. It just means that I can take some time to get some perspective. To remember that I have so much to be thankful for.

Healthy?

2011-10-19T11:14:00.000-07:00

I was feeling really healthy back in early June. Strange to say seeing as I am a two-time cancer survivor and have often felt over the past 4 years that I may never write or utter those words again. Regardless I was feeling that way. And when I went in for some pre-op testing in late June I was told by the nurse that I was..."officially the healthiest person I've seen today". It was a source of pride for me to be told that. Really, since my last check-up with my oncologist when I reached the 2 year cancer-free mark, was released from further Zometa infusions, was extended to once-a-year PET scans, and decided to have my ovaries removed as a step for further optimal health, I had been feeling great. Notice the HAD in the previous sentence.

Then I got my ovaries surgically removed and that sent me spiraling down a bit as I wrote about in a previous post. It took more out of me physically than I had imagined or hoped it would, and it took way more out of me emotionally than I was prepared for. Yet, slowly but surely I climbed my way back out of that hole and even felt good enough to try something new and exciting.

In my attempt to get back to some sense of 'normalcy' and move forward with my new feelings of health I finally went to see a 'regular' doctor. I had not had any physicals or been established with a PCP for 4 years so I thought now was the time to get that going. I wasn't looking for any trouble, wasn't dealing with any symptoms, not trying to change anything, just wanting to be like a regular person and see a regular doc, check my cholesterol, go there if I have a sore throat, etc.. Of course, getting back to normalcy would have some bumps in the road otherwise it wouldn't be normal, right? One week after my physical I get a call saying my TSH level is high and I have Hypothyroidism and I need to start taking meds. I'm like, "WHAT!!??"

I do a little research online, cause isn't that what we all do these days? But just a little as I don't want to get all worked up and start imagining that I have all the symptoms. But I do find that radiation to the neck can lead to hypothyroidism. And guess what....I had radiation to the neck. But no one ever told me that this might happen, probably would happen, at some point in the future. That sort of made me mad, just a little heads-up would have been good. But I also can see that if doctors told you about all the things that 'might' happen due to cancer treatments then lots of people may never get treated or lots of people will be looking for all these things to happen. I don't like to go looking for symptoms because I seem to be able to convince myself that I am experiencing them when the day before I was just living my life as if I was healthy.

So, after a second visit with my new PCP to talk about my thyroid and another blood test to be sure the first reading was right, I decided to start the medication, or as my doc likes to look at it, my supplement. She said really I am just putting back into my body something that is supposed to be there for optimal functioning. I like this 're-framing' as my therapist calls it. Sometimes it is just how we look at things that makes us feel one way or the other towards it. I was actually a little excited to start the supplement because I had been feeling sort of tired, sluggish, cranky and gained a little weight. So maybe this supplement is going to help with all that. Or maybe writing in my journal, meditating, going to bed earlier and not burning the candle at both ends will help with that.

Whatever the case I am trying to move forward once again. Get out of the stuck position that my emotions can put me in and consider all the options and possibilities. And along the way I hope to find a new 'healthy' that feels 'normal' and feels like me.

Cancer Redirected my Mid-Life Crisis

2011-09-10T13:25:00.000-07:00

Lately I have been thinking about how my cancer crisis redirected my mid-life crisis. I was first diagnosed with breast cancer a couple months before my 42nd birthday. I remember that when I turned 40 I did feel the need to make some changes, even though I don't think 40 is chronologically mid-life. Neither do I think 40 is physically, mentally or emotionally mid-life, nevertheless those feelings were there. My feelings presented themselves in the desire to cut my hair, and ride around Europe on a Harley. I did cut my hair, but the other part didn't happen.....yet.

After my cancer diagnosis I had some new priorities in my life, like staying alive through treatment and after. When my cancer metastasized to one vertebra 2 years after my initial diagnosis this mission was extended to longer than I had anticipated and gave me a pretty singular focus in the midst of trying to be a wife, mother, business owner and friend. I have written about and talked with other survivors about that feeling like cancer is a wake-up call, like you have to live every moment to the fullest, like now is the time to do all the things you want to do cause life is too short, etc... That can be a whole lot of pressure and I used to feel like a loser if I got mad at my husband or daughter over split milk or if I didn't climb Mt Everest every weekend.

And I sort of feel like the 'mid-life crisis feeling' is a mild version of the wake-up call to go do those things you want to do and be sure you are living the life you want to be living. And no matter what version of a wake-up call you might experience I feel that BALANCE is the key. I have been trying to achieve some sort of balance for quite a while now with varying degrees of success. The balance of living the life I want combined with living the life I have created with my husband, daughter, family and friends. The balance of living in the real world where there are societal expectations and responsibilities combined with the desire to be on permanent vacation. The balance of living with a life-threatening disease and just living.

I don't like the term 'bucket-list'. That is just my personal issue. I do like to think about new experiences that sound like fun and something I might like to try. I like to think about things I want to do and rate them in importance to all the other things happening in my life. I like to give things some thought but not so much thought that I never actually do them. But the term 'bucket-list' just makes me sad. And I also can not bring myself to read or buy the book entitled '1000 Places to See Before you Die'. I mean I just hate the title, but I want someone to read the book and tell me their top 10. So instead I read travel magazines and books, because travel is something I want to do and think about doing, and now I just need to DO it. I guess 'bucket-lists' and 'before I die' feels like too much pressure to me.

Before you think that I am just being stopped in my tracks by too much thinking and too much pressure let me tell you what I have done that is new and exciting (to me anyway) in trying to live a more authentic life and have some fun. I run. And I am now a coach for youth sports, something I get a complete and total charge out of doing. I am in my second year of coaching middle school softball and high school field hockey. I started skiing, thanks to Linda and can't wait to go again this winter! And now I am a surfer too! Well, I took 2 lessons, but I did catch my own waves on the second lesson, small waves, but waves none the less. And I can't wait to do more and more of that, talk about a total rush!

I think that one of the things about the surfing that has been so empowering for me is overcoming fear. I have a bit of a fear, or at least a healthy sense of respect for the power of the ocean. It scares me. But surfing has enabled me to face that fear and become more at ease in the ocean and therefore more at ease with myself. To be a part of the wave and ride it out feels like I am riding out the storm instead of raging against it or getting swallowed by it. And of course I get tossed by some waves and I go under sometimes, but I keep getting back on that surfboard and trying again. I paddle out against the incoming tide, then I turn around and go with the flow. It really is a 'feel' thing, just like this thing called life.

Derailed

2011-08-05T17:47:00.000-07:00

Six weeks ago today I was derailed. I had been wandering around feeling quite full of myself and on quite a 'high'. In May I had a fantastic appointment with my oncologist as I wrote about a few posts ago. Two years out from my recurrence, cancer free and looking forward to a new phase of wellness. I was also looking forward to getting my ovaries removed and continuing on my path of moving forward.

So when I got my surgery scheduled for June 24 I was ready to go and didn't ask too many questions, had the basic info and said 'Let's do this'. I had that moment of fear just before heading into surgery and asked my doc if I was doing the right thing. But that little moment of doubt was nothing compared to the panic attacks that hit me the days after surgery as I thought to myself, "What the hell have I done!?" Six weeks out I know it was the right thing to do, but those first few days, with my belly distended and suffering from intense gas pains that somehow manage to reach many parts of my body, I had my doubts.

The combination of recovering physically from surgery along with emotionally struggling with PTSD was a one-two punch that I was not prepared for. I was at such a point of feeling great physically right before the surgery and now I could barely walk around my house. And I also dealt with digestion issues during the second week of recovery which made me weak, tired and frustrated. All of the physical distress reminded me so much of past treatment and reminded me that I am not in control and my emotions took a dive.

Derailed, sent off track and trying to right myself, little things seem big. I look for meaning, try to follow the bread crumbs and read the signs. But in the search I sometimes try too hard. Sometimes a bee sting is just a bee sting and sometimes a feather is just a feather. A spilled drink is just something to clean up, a missed exit is just a little detour. Maybe the meaning in all of this is that sometimes there is no meaning, sometimes things just are. I need to be open, trusting and know that things will reveal themselves, if there is indeed anything to be revealed. In the meantime, breathe, run, smile, laugh, love, live.

My Running Life

2011-06-27T13:03:00.000-07:00

Static laden music emanates from the clock/radio next to my bed. The red numbers show 5:42am. I quickly turn it off so as not to wake Nick. I tumble out of bed and shuffle to the bathroom. For many months I am doing this in the dark, feeling my way along the hall. As soon as I get to the bathroom I plug in the space heater and throw my clothes in a heap in front of it. After I use the toilet and take a swig of water I transfer out of my cozy flannel jammies and into my sweat wicking running tights, bra and shirt as quickly as possible while half asleep.

I tiptoe downstairs and grab my hat, cell phone and a key, lace up my running shoes and head out the door. Many times I am also adorned with enough blinking lights that someone might mistake me for a school crossing guard who lost a fight with a Christmas Tree. My reflective vest, blinking lights attached to the vest and my headlamp are doing their job and that's really all I care about.

The stars shine brightly and on good days the moon is helping my headlamp do it's job. I make as much noise with my feet as I can and sometimes clap my hands together a few times just to let any wayward wandering creatures of the night know it is morning and I am near and if they would stay away I would appreciate it. I say my morning prayer in a whisper as I walk down the street and sweep the glow from my headlamp from side to side.

Soon I see another distant glow heading towards me, two trains on a collision course. We are so happy to see each other in the darkness and we continue our shuffle up the street as our bodies adjust to the cold and to what we are about to ask them to do for us. We begin slowly, small, waddling steps. The frigid air making it's way into our lungs and coming back out in puffs of white. Our muscles slowly releasing to the demands to move a bit quicker, climb up that hill, keep us moving forward.

We chat about our day ahead and whatever we may have left behind. We tell our stories to each other, sometimes in the darkness it is like a catholic confessional, we run side-by-side and spill out our fears, hurts, desires, happiness and joy. We catch our breath as we round the corner and the color of the sun rising in the sky stops us in our tracks. It is like someone was trying to wash a rainbow away but all they managed to do was smear and smudge it further across the sky. We are travelers, adventurers on a magical trip. Every morning holds the promise of seeing some part of the world that we would not see if we were still in bed.

We fall into our familiar rhythm in our proper places, I always run on the inside. We pass the familiar sights of our neighborhoods made more serene by the darkness and the quiet of the early morning. We see fellow travelers on foot, bike, car and we wave a morning greeting. As we finish our run more of the world has come to life. We become more of who we will be all day long, mothers, wives, employees, sisters, friends. We made our escape and now we must return as if nothing has happened and await our next chance to run.

I feel free when I run. And I feel like I am moving forward, and sometimes like I am running away.

A New Phase of Wellness; ( Or, Why getting my ovaries removed is a GREAT thing)

2011-05-21T11:34:00.000-07:00

This week I had the good fortune of having my best doctor visit in a long time. It was time for my 6 month PET scan and I was feeling confident. I know sometimes in the past I have felt too afraid to feel confident. Too overshadowed by this dreaded disease that tries to take over not just our bodies but our minds, emotions, lives. And when I say too "afraid to admit to feeling confident" I also mean that I didn't want to 'jinx' anything and then fall even further when things aren't as wonderful as I am expecting them to be. But I have decided that expecting things to be amazing is ok. And expecting that I am going to be great is ok. I may be pleasantly surprised, as I was this week, to have life go according to my wildest dreams.

I am 2 years cancer free now, from my second diagnosis of cancer. The diagnosis that said my cancer had metastasized to one vertebra. The diagnosis that put my disease into a new and very scary category. But this week things are changing and taking on a new direction. I have reached a new phase of wellness and am ready to keep moving in this new direction. I have graduated to once a year PET Scans! I have graduated to no more Zometa! I have graduated to 6 month doctor visits! I have graduated to mammograms!I have graduated to getting my ovaries removed! Yes, I said that with enthusiasm!

So let me explain a little. I was diagnosed with metastatic disease. Once that happened there was a shift in treatment and priorities, as I see it, in my case. It meant that breast and ovaries were the least of my worries. It meant that bones, brain, lungs, liver were the new priorities. It meant let's just hope we can keep it (cancer) at bay for as long as possible. So I had PET scans but no mammograms, and the ovaries were last on the list. Why get the ovaries removed, let's just see how long we can keep you alive. It was never said that way of course, but inferred by me, perhaps partly due to overwhelming fear.

So now that I have been cancer free for 2 years I have entered this new phase of treatment. (This is the longest I have been cancer free - post treatment - since the beginning). It feels a little more like this IS TREATABLE and maybe it is, dare I say it, gone for good. At the very least it means, hey, I'm doing great, right here, right now, so isn't that awesome!

There, of course, is a little part of my brain that says, "Oh crap, that's too long between check-ups and PET scans, what if something happens and we miss it." Or it also says, "If it ain't broke don't fix it." Meaning, let's keep doing everything exactly the same so we can be sure it keeps going well. I mean, it can be scary to STOP treatment or change treatment. But right now I am so ready for this change!

I also think about this and realize, well, it's not like I'm out of the woods. I will still see my doc every 6 months and have PET scans every year for the next 3 years at least. But that is such a huge step for me and I am so happy that I can feel happy about it! This is a new step in the right direction for me. And being able to feel confident and happy and keep moving forward is such a relief and something I have been striving towards since this whole circus began about 4 and 1/2 years ago.

Breathing in I know today is a gift, and I have to be HERE to live it.

Nourishing Healthy Seeds

2011-04-02T13:39:00.000-07:00

"Every time we practice mindful living, we plant healthy seeds and strengthen the healthy seeds already in us. Healthy seeds function similarly to antibodies. When a virus enters our bloodstream, our body reacts and antibodies come and surround it, take care of it, and transform it. This is true with our psychological seeds as well. If we plant wholesome, healing, refreshing seeds, they will take care of the negative seeds, even without our asking them. To succeed, we need to cultivate a good reserve of refreshing seeds." - Peace is Every Step - Thich Nhat Hanh

It is finally feeling like Springtime here in New Hampshire. Today the sun is shinning, the snow is melting and the crocuses are popping out of the ground (at least in one yard that I saw on my run today). Spring automatically brings to my mind the idea of planting seeds. Soon I know I will be in the garden with Martha digging in the gorgeous dirt and planting the peas, first thing to go in the garden up here. My garden time with Martha definitely also counts as planting and nourishing healthy psychological seeds in me.

Reading the above section from the book "Peace is Every Step" by Thich Nhat Hanh, really made me think. It was shortly after my wonderful ski trip with Linda that I read this section. Thich Nhat Hanh goes on to describe how one might use these healthy seeds and call on them in difficult times. He says, "If you have a friend who is very close to you, who understands you, if you know that when you sit close to her, even without saying anything, you will feel better, then you can invite her image up into your consciousness, and the 'two' of you can 'breathe together'. Doing just this may be a big help in difficult moments."

The ski trip was a strange mixture of sadness and hyper-awareness of the moment. My last post was about Zachary. Linda and I learned of Zachary's death the first night of our trip. This brought us much sadness and grief. And it also brought for me a hyper-awareness of how blessed I am and how lucky I was to be on the mountain with Linda. Each ride up the chairlift with my friend was more meaningful. Each run down the mountain was a gift. Each story we shared, and even each quite space was filling me up and helping me to cope with a loss that I didn't understand.

These moments are still helping me. I can call on an image from that trip and use it to nourish me when I am feeling sad, or sorry for myself or stressed-out. I am learning from this to call on past experiences and try to stay more present day to day and to see that any special moment could be a seed I use later to nourish my soul.

I feel lucky that I have a wealth of family and friends around me to help me plant these beautiful, healthy and strong seeds.

What feeds you? What nourishes your soul? What do you call to mind to help you through?

Zachary

2011-03-14T15:27:00.000-07:00

When I first met Zachary he was 2 years old (I was 42 years old), he was bald (so was I), he had a port in his chest for chemo (so did I). He was climbing around on the brightly colored gear in the waiting room of the Jimmy Fund Clinic. I had just come from a radiation session in the basement of the Dana Farber building. We both had our hospital bracelets on. Zachary was fighting acute lymphoblastic leukemia (ALL). He apparently had a very resistant strain. I was fighting Stage IIB invasive breast cancer. My friend Linda, who accompanies me on many of my trips to Dana Farber is good friends with Zachary's parents and has known them since before Zachary was born. So we stopped in to see Zachary and his Mom.

The second time I met Zachary he was 5 years old and he and his Mom were basically living on Dana 6. He was getting lots of chemo to take his counts to as low as you can get them in preparation for a bone marrow transplant. He was bald (I was not), his little body was bruised (mine was not). I was receiving some meds for treatment of Stage IV breast cancer that had shown up in one vertebra so I did have my hospital bracelet on again.

Zachary had an amazing presence considering what his body was going through. He had a smile that lit up the room, even the tiny hospital room he and his Mom were living in (her with a bed in the window sill). He had lots of energy and was happy to show me and Linda how he could zoom through the halls on his push car, going surprisingly fast, much to the dismay of the nurses who feared he would injure his fragile body. He took me down the hall to show me the play room full of many brightly colored toys, books, a video game and much more. For these few minutes his Mom was able to talk with Linda and take a breath, but it was only for a few minutes.

I will not have the chance to meet Zachary again, at least not on earth. Last week, at the tender age of 6, after battling ALL for 4 years, Zachary died. His family is heartbroken. His Mom, Dad and little brother have a huge hole in their life.

I feel lucky to have know Zachary in the small way that I did. My life will forever be touched by his. He reminds me that each day is a gift. I try to honor his life and his family's loss by treasuring and showing gratitude for my life and my loved ones.

It's Not All About Me

2011-02-28T17:30:00.000-08:00

Sometimes I get overwhelmed with talking about my cancer. So why am I writing about it here today? While it is overwhelming and feels like I am hyper-focused on myself some days it is still helpful for me to get some things down on paper (or computer screen). My personality type does better with written expressions rather than spoken so this blogging thing works well for me.

Hyper-focused on my health would be an understatement of my day last Thursday. I had my 3 month visit to Dana Farber for my blood work, Lupron and Zometa. Luckily my friend Linda was able to drive me so that makes it better. And we got to navigate the new Yawkey Cancer Care Center which just opened next to Dana Farber. This was my first trip to the new building although I have been watching it be built for the past 2 years. My name is also painted on a beam of this building (see my much earlier post entitled Name on the Beams, http://debbiescancerblog.blogspot.com/2009/06/name-on-beams.html). One very cool thing about the new building is that it is very light and there is lots of exterior glass, which has also allowed them to keep the painted names visible from the outside! I was not able to see mine this visit but will check for it in 3 months and get another picture if I can. Beyond there being a few delays everything went fine. Well, as fine as things can go when you are getting treatment for cancer.

What I really wanted to say is that all this makes me want to do something for someone else's cancer. Is that weird? I want to go run the Vermont City Marathon on a relay team for my friend Nancy's partner who died of a Brain Tumor. I want to start a fundraiser for a 6 year old boy named Zach and his family. They have been fighting his very resistant strain of ALL for 4 years now and are back to the beginning with a new experimental drug and hopes of a second bone marrow transplant. I want to help anyone and talk about anything OTHER THAN breast cancer. That is my real problem with the pink ribbons and the commercials and the events and the awareness month. I mean I know it is helping so many people INCLUDING ME. But sometimes I want to scream and run in the other direction. It is probably fear and a bit of the ostrich wanting to stick her head in the sand that makes me feel that way. But I am so much more than a woman who is battling breast cancer. At least I am trying to be so much more.....

Happy Birthday To Me

2011-02-15T13:47:00.000-08:00

Four years ago today I was one week out of my first chemo treatment and had just shopped for a fake breast and mastectomy bra. I was in shock, yet aware that it was very good to be celebrating my 42nd birthday.

Two years ago I had just recovered physically from my second CT guided biopsy of my vertebra and was preparing mentally and emotionally for a new course of treatment. I was still in shock from being diagnosed with Metastatic Cancer. Yet once again, on some level, I knew that celebrating a birthday was good.

To be celebrating meant I was still here. I was still moving forward. Time was moving forward and I was getting through another day, another week, another month, another year. I must be doing something right, I must be fighting well cause I was still here.

Next week I will head to Dana Farber for my 3 month visit. I will get a shot of Lupron, an infusion of Zometa and some blood work. It is always a bit odd to make that trip and go through those motions that remind me of where I have been over the past 4 years. Today I am less in shock, but I wouldn't say that the strange feeling of surprise or disbelief that I have really gone through everything I have gone through over the past 4 years has gone away, it sneaks up on me at times.

But today as I turn 46 I will be celebrating again, with more awareness than ever of how great it is to be celebrating my birthday.

I am in the midst of creating a new life for myself. I am finding myself on the new path, this new journey. I know that the expression 'finding yourself' may get a bad rap but that is a pretty exact way to express what I feel I am going through. I am getting to the real me, the truth. I am open to the possibilities. I am grateful to be where I am right now. I am grateful that there is much more to my journey ahead.

Blessed instead of Depressed

2011-01-29T12:54:00.000-08:00

I have been battling that demon Depression again. Ever since I was diagnosed it hounds me, sneaking up and overwhelming me. I am learning how to deal with it, I get better and better. But sometimes it seems to react like those viruses that become resistant to antibiotics and then you have to keep trying new or stronger ones. I am learning how to beat the depression and then it learns a new trick and I have to change up my game plan.

What generally does work for me over and over is Gratitude. I just have to remember to use it. Right now I am pretty deep in the throws of some PTSD. It is 2 years since my recurrence diagnosis. And the winter I was diagnosed was much like this one with a heavy snow storm every couple days. I was shoveling all the paths, stairs, deck, etc constantly. I had a pain in my back that kept getting aggravated, which latter turned out to be a symptom of the cancer in my vertebra. So it is dejavu in a very bad way for me right now.

And even though in my last post I did say that pie and cowbell have been proven to eliminate PTSD symptoms, and I do believe it to be true, I can't eat pie every few minutes of my life without exploding:) So when my mind and my heart turn to sadness and fear I have to empty those things out and fill myself back up with gratitude and hope. Today I left a comment on my Facebook friend Luann's wall. She is a breast cancer survivor who has had an amazing outlook, full of positivity and spirituality. I told her I was needing a shot in the arm from her and she posted a wonderful essay on her blog about what has been going on for her. (http://lchevalier.blogspot.com/)

Luann inspired me to write a blog I had been forming in my mind. A blog about all my blessings, especially over the past year. When I think about everything I did and how amazingly blessed by gifts from God I was last year it is hard to be discouraged. So let me tell you, besides being blessed by my amazing husband, daughter and family and friends I have had these blessings in 2010:

1- Feb 2010 - 6 months after my treatment ended and my doctor said it was okay for me to start running again I ran my first ever half-marathon. The gift of running was amazing, but even better was the gift of my running partner Danielle.

2- March 2010 - I go on a ski week getaway with my dear friend Linda. The weather is amazing, the mountain is amazing and Linda and I have the best time skiing, playing cribbage, soaking in the hot tub and watching American Idol.

3 - April 2010 - I get an email from my daughter's middle school saying they are looking for a softball coach. I had been thinking about getting into coaching as I love sports and wanted to try something new. I asked my friend Martha if she would do it with me, she is an experienced coach. She said yes and my first coaching job happened. I loved it!

4- June 2010- I hear about a Freshman Field Hockey Coaching position open at the local high school (I hear this through Martha). I think I can't do it, but then God tells me I can. I apply for the job. Martha writes me an amazing letter of recommendation. I go for an interview. I get the job!

5 - August - October 2010 - I coach Freshman Field Hockey at WHS. My team is amazing, we have an undefeated season, 11-0. I have truly found my passion! I am asked to be a part of the Varsity post-season. I get to witness and support the team as they win the State Championships.

6- June 2010-December 2010 - I have lost 25 pounds. I eat right, exercise and feel great. My running is better than ever before.

Beyond these amazing gifts I am open to new possibilities, I took a writing class and have begun learning Taoist Tai Chi. I am thinking about going back to school and becoming a Physical Education teacher.

Lastly, I have been reading, listening and watching a lot of Joel Osteen and he says "Stop telling God about your problems and start telling your problems about your God." He constantly reminds me that we have to speak faith into our lives. And I find when I can remember to speak faith and express my gratitude for all my blessings I start to feel better.

So I say, in the name of Jesus...
Cancer, GET OUT OF MY BODY
Anxiety, GET OUT OF MY HEAD
Fear, GET OUT OF MY HEART
Panic, GET OUT OF MY GUT
Despair, GET OUT OF MY SOUL
Self-pity, GET OUT OF MY SPIRIT

Instead
HEALTH and HEALING, FILL MY BODY
PEACE, FILL MY HEAD
HOPE and LOVE, FILL MY HEART
QUITE CALM, FILL MY GUT
FAITH, FILL MY SOUL
GRATITUDE, FILL MY SPIRIT

How have you been blessed this year? What are you grateful for?

Remember - "If the only prayer you ever say in your entire life is "Thank You", it will be enough." - Meister Eckehart

Many thanks to all of you, and many blessing too.

New Study about Pie and Cowbell and PTSD

2011-01-21T12:19:00.000-08:00

This post is dedicated to and inspired by the amazing woman who introduced me to Pie and Cowbell - Jody Schoger!

A new study (and by study I mean something I created in my head while I took a shower this morning) based on many participants (and by many I mean more like a handful, or as many twitter names as you can fit in 140 characters) in a variety of social networking forums (and by variety I mean Twitter with a side order of Facebook) has shown (and by shown I mean I inferred) that Pie and Cowbell (and by pie and cowbell I actually mean real pie and real cowbell) can reduce cancer-related PTSD symptoms (you all know what that means right?) by a statistically high number (and by that I mean a number I made up like 99.99999%).

Okay, this is what really happened. There was this article in the NY Times about a woman who is living with Metastatic Breast Cancer. I saw it posted and I went and read it. So did some other women on Twitter. Then we shared it with anyone who hadn't read it yet. Then we all started tweeting. We are all cancer survivors, some with mets and some without.

At first the conversation was understandably a little deep because we are talking about having a disease that is life threatening. But after we got through the deep waters, with lots of love and support to buoy us, we started tweeting about pie and cowbell. This made us all feel a lot better. I know you might not understand how tweeting about pie and cowbell could make anyone feel better, in fact you might not understand how tweeting can make anyone feel better, but for me and a few other people it seems to work. All the tensions that the article brought up started to dissipate.

Now in my mind cancer is as individual as people and so is PTSD. So what works for a handful of amazing women on Twitter may not work for you. But here are a few other idea to help with PTSD: Running, chocolate, sewing, quilting, cycling, swimming, taking a walk, petting your dog, calling a friend, drinking some tea, writing, blogging, singing, dancing, skiing, knitting, reading, watching a movie, drawing, painting, playing music, listening to music, playing with your kids, playing with your neighbors kids, playing with your grandkids, being no where near kids, shopping, scrapbooking, tai chi, yoga....Do you get the idea, the list goes on and on. Find what works for you and do it! I would love to hear what works for you cause it might work for me too, but even if it doesn't I am glad you found something. Who knows, maybe they'll do a study about you too:)

To find and read about the amazing women who inspired this post you can look at my blog-roll listed here. They are Jody, Marie, Lani, Anna, Katie, Stacey, Nancy, and Alicia, among others!

And to those wonderful women I say, come to my house anytime. I'll be serving pie and starting the Cowbell Choir!

New Year Revelations

2011-01-09T16:53:00.000-08:00

I am finally finding time to write about my New Year Revelations. Yes, I know it is usually time for Resolutions but this year I am realizing some Revelations. As I mentioned in my last post, December brings my Cancerversary and may I also mention that January also brings my Cancerversary - Part II. So needless to say this time of year brings with it many emotions beyond those involved with the Holidays and the beginning of a New Year. Add up all that is going on and this year I found myself feeling rather Existential - but not in a great way. Basically I was in that place of "Why are we here?", "What is the point?", "What am I supposed to do with my life?", etc...

Having survived cancer 2 times has lead to many of these existential moments over the past 4 years. Each time I go through this place I learn something new about myself and what I consider my journey in this life. I learn by talking with my family and friends. I learn by going to my therapist and writing in my journal. I learn by reading the blogs of other survivors or people on their own journey. I learn by reading books and trying new things.

A couple of blogs posted by my dear friends this New Year have helped me a bit in my Revelations. First is the wonderful Jody Schoger and her post entitled "More Cowbell" on her fantastic blog 'Women With Cancer'. (http://womenwcancer.blogspot.com/2011/01/to-2011-more-cowbell.html) This is a post from a woman who knows where she is and where she has been and best of all, she knows the things that matter to her most in the moment. (And if you don't know that reference - "More Cowbell!" then go to YouTube and look it up.) Another post that helped me think about my journey and how to start to plot the next points on my map was the post by the fantastic Marie Ennis O'Connor on her blog 'Journeying Beyond Breast Cancer'. The post is entitled "A Special New Year’s Wish". (http://beyondbreastcancer.wordpress.com/2010/12/31/a-special-new-years-wish/)This post reminds us that change is inevitable and that the more we can do to accept change rather than fight against it, the better we will be able to move forward on our journey.

I have also been reading a few books that have helped me think in new ways and see the journey of life in a new light. 'The Alchemist' by Paul Coelho is a fabulous story about taking our own journey to find our own 'personal legend'. This story is chock-full of insight and one that especially hit home to me was when the Alchemist tells the boy, "Tell your heart that the fear of suffering is worse than the suffering itself. And that no heart has ever suffered when it goes in search of its dreams, because every second of the search is a second's encounter with God and with eternity." I have also been reading 'A Life at Work' by Thomas Moore. It has been very fascinatingly to read these two volumes at the same time as there is much information that overlaps but told in very different ways. Thomas Moore writes, "The point is not merely to succeed but to become a deeper, more complex, more mature person through your struggle. You allow the alchemy of your challenging journey to etch itself into your character, making you into a rich personality. Then whatever work you do will have the quality of your experience and your capacity to be ripened by it."

And over the last year I read 'Simple Abundance' by Sarah Ban Breathnach which has daily readings that start off with a variety of very meaningful quotes. At the end of December she included the poem 'Ithaka' by Constatine Peter Cavafy. The poem begins with this line, "Pray that your journey be long..." A simple and straightforward sentiment that really hit me like a ton of bricks. Of course you would want your journey to be long, right? But sometimes it gets so overwhelming and exhausting it feels like actually asking for a long journey is just crazy or too much for me to handle. But I quickly realized that I would be the luckiest person in the world if I had a very long journey, full of all the ups and downs that the journey may bring.

One more quote from 'A Life at Work' by Thomas Moore really spoke to me where I am right now and where I need to move towards. "You have a soul if you are breathing and show signs of life. But you also need to breathe in a less literal way, taking life in and breathing it out: winning and losing, being happy and being sad, beginning a project and ending it, entering relationships and leaving them. This is the bittersweet rhythm of an engaged life, and it is a sign that you have a soul." I guess this quote helped me realize that I am most certainly living an engaged life, full of many different types of breaths. I don't always like the breaths that are coming in and out, but I am trying to accept them, accept the breaths, accept the cancer and then move forward, accept the coaching job and then move forward. I realized recently that once I had coached field hockey this fall with such joy and success that I sort of felt like, okay that was great, that was a blessing, that was amazing. Let's just stop there, then I don't have to worry about failing or losing or wondering if I am blessed or wondering what to do next. Like, let's freeze time, the journey, my life right there. But then it wouldn't be a life, it wouldn't be a journey, it would be stuck, stagnant, the end, it would be a soulless existence.

We have to keep growing, learning, moving forward, riding the roller coaster. If we want a long life, a long journey then we have to accept the ups and downs. We have to come to terms with the fact that we can have our cake and eat it too, but sometimes the cake might make us sick to our stomach, but that doesn't mean every cake will make me sick, or that I will never eat any more cake, I just love cake too much to stop eating it forever.

I want 'More Cowbell" and I want to learn how to accept change, even welcome it like a best friend. I want to be open to all the possibilities and willing to try new things. I want to realize that fear will be part of my journey but also realize that the fear of the thing is worse than the thing itself. I want to remember that joy, fun, passion, love and hope will also be part of my journey, especially when anxiety, depression and fear have climbed into my backpack. I have room for all of it in my backpack, some of it is lighter and easier to carry, other things weigh me down. But as Merci reminded me, I can put my backpack down for a while. I can take a break, look around, enjoy the view, search ahead for the next steps that will take me along the ridge to the next mountaintop, I don't always have to travel down into the valley.

I pray that my journey is long and I pray that your journey is long too.

4 Years

2010-12-14T13:51:00.000-08:00

Last night in bed I was thinking about how it has been almost 4 years since I was officially told I had cancer (the first time). It was one week before Christmas when I got the word and began on that slippery slope into cancer hell. A crappy time of year to get that kind of news, but then again, is there ever a good time to get that kind of news? NO.

Cancer doesn't care about the when, or the how, what or who, and we all know it most certainly does not care about the WHY? I cared about the why, in fact sometimes I still do, I just can't help it. Of course I thought "why me" when I was told. And eventually of course I thought, "Well, why not me?" I mean it happens to so many people.

And since I dealt with the cancer metastasizing 2 years ago I have continued to ask, on-and-off, "why me?" And although I am Disease-Free today I still fall back into a state of shock if I think too long or hard about what I have been through. I try not to feel sorry for myself because I know that doesn't help anyone, most of all me. But that whole PTSD thing is hard to break free from and when stress rears it's ugly head I find myself fighting many similar feelings that have haunted me for the past 4 years.

Lately I have been thinking that it could have been useful to have had someone video tape me during the months of my treatments. I don't mean to sound weird or sadistic here but seriously, sometimes I can't believe this has really happened to me, the only evidence of it is my screwed up mind, my scattered emotions, the scars left on my body and the missing chunk of time in my life.

I have done some wonderful and amazing things since I was diagnosed 4 years ago. I am sorry to sound like I am pissing and moaning here, it is really just my current state of mind leaking through to the screen. I am now in better shape physically than I have ever been, I have found a new passion to pursue and I do relish most moments in my life. The mountain tops have been so very wonderful, better that I would have expected after hearing the news 4 years ago. And with those great highs I guess the lowest lows must come, sucky but true. Time for me to suck it up and move on. Thanks for letting me vent.

One

2010-09-09T11:28:00.000-07:00

So today I went to Dana-Farber for my 3 month visit. This trip included blood work, an infusion of Zometa and a shot of Lupron (in my posterior). I was experiencing less "pre-visit anxiety" than usual, probably due to the fact that I have been incredibly busy (and Blessed) with lots of work to do, a new job that I love, and getting my daughter ready for 7th grade and for her 13th birthday.

Things have been great, although hectic, and I am luckily still in that place of gratitude, thankfulness for God giving me so many gifts and remembering that each day is "this day". So that is a good frame of mind to be in when you have to visit a place like Dana-Farber and be reminded of all the hurt around you and all the hell you went through. I must say that for me Dana-Farber is a wonderful place, with lots of many helpful, caring and sensitive people. But still it is a cancer hospital and still you see many people walk, or get wheeled into the doors who are in lots of pain. And today was especially busy. Some days just are. The waiting room was jam packed on the 9th floor, women's cancers.

While I waited I wrote notes about yesterday's field hockey game. I am now coaching the Freshman Field Hockey team for the local high school, and I LOVE IT! We had our second win but there was lots of room for improvement, so I was writing down all the things I want to say to the girls today and drawing play diagrams out on paper. A young, turbaned woman sat next to me and asked if I coached soccer. I said no, field hockey. She said she coached soccer for the past 5 years, and she teaches high school English and loves it. I told her I am new to coaching but after my first diagnosis with cancer I decided to start running and got into fitness and now have found coaching. She looked at me with a glimmer of hope in her eyes. She said, so after diagnosis you started running? I said about 6 months after all my treatments ended I started gradually. She sniffled, not from sadness but that chemo, I-have-no-nose-hairs-so-my-nose-runs-all-the-time sniffle. She said she has 2 young kids but can't wait to get back to coaching, I said she will get there again, for sure.

So after the nurse called me in and put in an IV and took some blood I had to go sit and wait again for the blood work to be sure I could go ahead with the Zometa. While I was sitting more and more women came through, young, too young, older, still too young, etc.. One woman was in a wheelchair and by herself. After the nurse took her vitals and brought her back to the waiting area the woman asked for coffee. Dana-Farber has many food and drink stations about the waiting areas for patients and family/friends. So the nurse tried to get her coffee but the nearest station was empty. As I mentioned the place was particularly busy today so the nurse apologized, said she had to get to the next patient and would see if she could get someone to help the woman. So I got up, asked the woman what kind of coffee she wanted and cream or sugar. She said both and I went in search of the nearest coffee station (around the corner) and got this woman what she needed, some coffee and a little kindness:)She was very appreciative.

Then while I was back in the nurses station to get my infusion and shot a woman was nearby behind a curtain with another nurse who was taking her vitals. The woman asked for a tissue and said she needed to cry. She said it was just so busy and she couldn't stand it, it made her sad and it made her think,"What is going on?" She wasn't really crying for herself, (although when the nurse asked if she was having any pain she said yes, about a 4 or 5) she was crying for everyone else. The woman kept apologizing and the nurse said not to worry, they see lots of tears, and then the nurse also said, "I get in my car everyday and cry when I am driving home."

Then when I was driving home I was listening to the song "One" originally sung by U2. And suddenly all these women and all the other people I saw today and all the people I know and don't know and all the people I love came into my head and my heart and it made me cry. Not a going into the depths of despair cry, just a tear or two about life, and love and how hard it can be and how everyone seems to be trying to do what they can.

These are the last words of the song, written by Paul Hewson, Dave Evans, Adam Clayton, and Larry Mullen, Jr.

One life
With each other
Sisters
Brothers

One life
But we're not the same
We get to
Carry each other
Carry each other

One

I hope you can carry someone today, or let someone carry you. We can all take turns.

This Is The Day

2010-08-01T13:15:00.000-07:00

It is a bible verse many of us are aware of, have heard before, in passing if not in Church, whether or not we are religious. I am speaking of Psalm 118:24, "This is the day the Lord has made; let us rejoice and be glad in it." You may know a slightly different version, but all have the same basic meaning for me: We have today, make the most of it, be happy, find joy, make the choice.

My latest attempt at reconciling my life post-cancer lies in this bible verse. I try to wake up every day and say to myself, "This Is The Day". I have written about how at times that has felt like pressure to me. I often feel like it means I have to do something amazing and earth-shattering today, some thing that will change the world and positively impact at the very least me and my family and friends. There are many similar ideas along the lines of "This Is The Day" such as "living in the moment" or "living each day as if it were your last" or "living your life to the fullest". They all seem to conjure up that same pressure and anxiety in me, like, I'm wasting my time here, I need to do something else, something big and do it now, but I don't know what that thing is. My mind says, "Well it can't possibly be laundry, dishes and scooping dog poop in the back yard." I mean how can this day be great if I am hounding my daughter to clean the guinea pig cage or get her chores done? How can it be a great day if I am cleaning the toilets or weeding the flower beds?

I have decided that it can still be a great day if I make the choice to feel that way about it. Doing all those daily chores and more can be part of a great day. I am taking care of my home, my family and myself. Chores, yes, even scooping dog poop, can be part of the equation. It is about balance, something that often feels very elusive to me, especially post-cancer. Also there is the much needed attitude adjustment. Instead of throwing myself a daily "pity-party" I can realize how great my life is, how lucky I am and be grateful. I am lucky I have a daughter who has a guinea pig that she loves and cares for, even if she needs some prodding. I am lucky to spend time with my daughter each day, even if I have to share our time with the guinea pig, if it is important to her that is what matters.

I get to choose how I respond to the things that happen moment to moment in my life. And by making a choice about my reaction to life I can help control my life, at least those few things we have control over. I DO have control over how I react and relate. I CAN decide to look at the glass half-full. I CAN decide not to fall in the same emotional holes in the sidewalk of my life. It takes work, it takes hard work, but what are the options? Being stuck, feeling angry and sad and letting those negative emotions control me? Of course I get angry and sad and anxious. A full range of emotions is important in my opinion.

But I can try my best to help myself out of the negative emotions. I can remind myself that "This Is The Day". I have this day, it is a gift, I can do with it what I want. I have some limitations, some parameters. I live with other people whom I love and therefore they come into the equation of what I will do with my gift of this day. I may make plans for the future but I can not live for the future. But I can also decide to not live frivolously without thought. It is the balancing act. What do I want? How do my loved ones fit in? Who needs my help? How do I help myself? What can I do that makes me feel good, brings me peace and joy? Do the work and take the time and make the choice and forgive yourself when you make a mistake. We are only human and we are doing our best.

Life Goes On

2010-06-28T15:24:00.000-07:00

It seems that even though there are times we can't imagine how it happens, life does go on. I find it hard to believe sometimes that it has been 3 and 1/2 years since my original diagnosis. How have I managed to get through that many days? How have I continued to put one foot in front of the other? And how do other people do it?

My sister-in-law is an 8 year Breast Cancer Survivor. She was a huge help to me when I was diagnosed. She has 2 boys ages 10 and 12 years. She is married to my younger brother. She was just diagnosed with a Sarcomatoid Carcinoma in her other breast. How does life go on? This weekend my brother and the 2 boys went to visit my Mom and I took my daughter over too so we could all be together. In the midst of this was the graduation of my older brother's daughter. Also my first visit with my great niece who is 6 months old. To say there was a lot going on in my head and my heart is to put it mildly.

But on we all went. The cousins played and had fun. We spent too much money and time at the local amusement park, but the kids really had a great time. We did mini-golf and drove go-carts. We went to the drive-in movies and ate M&M's and popcorn. We had a Graduation party and went swimming and the kids caught fish in nets off the dock. I held my great niece and got her to laugh, not that hard to do since she is perhaps the happiest baby I've ever met. A product of a young unmarried couple who are happy together and surrounded by a large extended family that adore this baby, and it shows. That baby is always being held by someone who loves her and I am fortunate to be one of those people.

I went to church with my brother and his oldest son. I was overwhelmed after communion with a sense of what, I don't know. I watched my brother as he frequently excused himself discreetly to text, or call, or email his wife. I prayed and hoped and tried to believe for the best every night. I went for a couple runs with my brother (or I'll say I tried to keep up with him while he ran) and listened, letting him lead the conversation to talk about cancer or not. I tried to just be there. And it's harder than you might think. Especially when it seems at times impossible to separate my own feelings about myself from his feelings about his situation.

The good news that I heard tonight is that a bone scan and CT scan showed no other disease in my sister-in-law's body. Thank God for that. She will have a mastectomy on Thursday. Then we will see what happens from there. But regardless of what happens medically there are some things I know will happen. She will go to work and walk the dog and make the meals and go to the pool with her sons and sit on the patio with her husband. They will go to church and mow the lawn and have cook-outs and ride their bikes. They will carry on as we all do. What other choice is there? Life does go on.

Yesterday

2010-05-30T17:42:00.000-07:00

This roller coaster ride of cancer diagnosis, treatment and recovery just keeps rolling along. As many of you who read my blog know, I have had my ups and downs on this journey and the past few weeks have been no exception.

This is where I was at yesterday: Why is it that fighting for my life has made me feel like I don't know how to live anymore?

There are so many pieces to that question and so many possible answers. One thing I have thought about recently, and written about a bit, is the pressure I feel to think, act, be a certain way to make sure that the cancer doesn't come back. I'm not just talking about eating right and getting enough exercise (although those both can feel like pressure sometimes too). I'm talking about praying, saying mantras, using the 'mind-body' connection to it's fullest ability, etc...What this boils down to is a feeling of guilt, a feeling that it is my fault I got cancer the first time and the second time and now how do I make sure it doesn't happen again. And if it does happen again it must surely be my fault once more. So how do I control it? Of course there is the rational part of my brain that knows I can't control it. But that part of my brain does not win the argument very often lately.

So maybe you can imagine the need I feel to maintain some sort of constant vigilance, that really turns into a constant worry somewhere in the recesses of my mind and my heart. I must maintain my guard at all times, I mean cancer snuck up on me twice already, who knows when it will try to do it again. It is a very tenuous, volatile sort of life to try and maintain. Because while all of this is going on under the surface there is the daily things of life that are calling me and that I must do to maintain the appearance of a rational, 'normal' person. In a word it is exhausting.

But I have found of course that 'living' with my guard up, with constant fear and worry, with pressure and anxiety is not really living at all. And that is where I often find myself these days. And in an attempt to push it away I practice the "fake it till you make it" model of living. I get up every morning, I sometimes go for a run, I eat my breakfast, bring my daughter to school, get some work done with Nick, walk the dog at lunch, make dinner, do the housework, talk to family and friends. Some days I fake it all the way, other days I seem to make it.

I know that cancer is a wake-up call to many people, and it has been that to me as well. Although I have woken-up in many ways I don't know what to do now that I am awake. I am more aware than ever before of the moments passing but I don't seem to be able to make the most of them. And this of course means more pressure on me. How do I make the most of my moments, of my life, of my dreams. I think that some people who fight for their life continue on that fighting path. They become advocates and fight for others. They change their lives and help others to make changes. They go after their dreams with gusto making their "bucket list" the new "to-do" list. I find that I am stuck in some sort of limbo watching the moments go by and not knowing what to do.

Am I just paralyzed by fear and self-pity? Or has my world been shaken so strongly that I don't recognize it anymore? That I don't recognize myself anymore?

Turning the Trench into a Valley

2010-05-09T14:50:00.000-07:00

It has been a while since I have written here. I have been pacing back and forth in that trench I wrote about last month. Every once in a while I see some light coming through the opening at the top. Evey once in a while I start to climb out, every once in a while I slip back down. I have to say I am thankful to God, my family, friends, therapist and the people who have read and commented on my blog. All the support has helped me begin to build a ladder to climb out of the trench.

My thoughts these days have turned to how to make each moment better. And how to not make it feel like a burden or pressure to live that way. To me, it is similar to the pressure of positive thinking that my friend Marie wrote about recently. The pressure to think positive and stay uplifted in times of trouble and illness in order to 'heal' yourself can be overwhelming to me. And although I do value the power of positive thinking and put it into practice as much as I can it will never completely banish the fear. That is just the way it is sometimes. Sometimes there is so much fear that it catches you by surprise and you can't beat yourself up for the fear existing.

Similarly I feel lots of pressure to live in the moment, make each moment count, find joy in the ordinary and do something meaningful with my life. While the wake-up call of serious illness like cancer can be a gift it can also be a curse. Now the ordinary doesn't seem so ordinary, but not in a miraculous, dreamy way. Sometimes it is in a scary, how long will this last, how long do I have way. And each moment I let slip by feels like a failure. And realizing that much of this pressure comes from within also feels like a failure sometimes. Knowing the thing that is hurting you but not finding a way to change it is so frustrating.

But recently I was listening to a sermon by Joel Osteen about not just living from one great moment to the next, and how important it is to enjoy the journey in between the great moments. Joel Osteen called the great moments 'mountain tops'. This sermon combined with a post again by my friend Marie (Journeying Beyond Breast Cancer) about living in the moment made me think about my life during and after cancer. And it made me think about a way to think of the ordinary moments. It made me think of the valley's in between the mountain tops. And how the view from the mountain top is so amazing and beautiful and powerful and large. But that valley's can be beautiful too. They can be lush and green and full of little wonders. We may have to look harder in the valley. We may have to look at each step in front of us. There may be logs, and rocks to trip us up. There may be rivers to cross. But if we pay attention we can find our way. If we look closer we may find many more wonders than we knew existed. We can find the wonder right before our very eyes, right under our noses. We must give value to it the way we give value to the panoramic views of the mountain top. If we can find a way to make each step in the valley count, and each step up the mountain precious then I think the view from the top will be even sweeter. And we must know that we will climb down the other side. And we will cross another valley, and another. That is the way life is. There will be cliffs, ravines and trenches that will scare us and test us. But there will also be wonders, beauty and adventures that will lift us up and remind us of all we are grateful for. It is ours to choose. To try every day to make the valleys as important as the mountain tops.

In The Trench

2010-03-29T17:31:00.000-07:00

So two weeks ago I wrote about how I was feeling stuck. And then last week I wrote about getting un-stuck due to some awareness. But this week I realized that awareness does not mean un-stuck. It means awareness, a glimpse at what you were missing, a piece of the puzzle. Trying to do something with this awareness is the key. I became aware that I was judging my feelings, my experiences, my feelings about my experiences and judging myself.

When I wrote about being stuck I said that it felt like I was watching my life as if it were a Merry-Go-Round spinning in front of me and I was paralyzed with uncertainty and could not get on the ride. When I wrote about getting un-stuck I said that it felt like I could imagine jumping on the Merry-Go-Round, or at least finding a place I might like to try to jump on.

But this week I had to go to Dana Farber for my Lupron shot, infusion of Zometa and blood work. This one little trip filled with the reality of my cancer fight sent me reeling. Instead of jumping on the Merry-Go-Round and moving forward I stepped away from it. And in doing so I have fallen backwards into a trench. A dark, muddy, wet, slippery trench. It is a different kind of stuck now. It is a depressed, despairing, self-pitying stuck. It is the kind of stuck in the mud that sucks you down and takes so much work to try and climb out of that you get tired just thinking about it. So instead of trying to climb or even trying to think you become numb. You become blank.

I am fighting against this right now. This weekend I fought the inertia. I cleaned my closet, went for a bike ride, walked the dog, raked in the garden with a good grounding friend and went for a run. But when I stopped I fell deeper into the trench. It is hard then, trying to figure out what to do, how to help yourself. I tried exercise, it made me tired. I tried time with a friend which helped until the minute I left that friend. I try to think about what my therapist would say to me if I was sitting in her office. I try to pray and I try to be grateful.

I finally decided to stop trying so hard. It is difficult to stop trying, because I feel like if I stop trying then I will really get into a bad spot. But I finally decided to try to stop judging my depression and stop judging myself for feeling depressed and tired. Once again it is about letting go. And I can begin to feel a little of the weight start to lift. I can begin to see a light at the top of the trench.

Getting Un-Stuck

2010-03-20T12:10:00.000-07:00

I was somewhat surprised to see how much my post about being 'stuck' resonated with so many other people. I don't know why I was surprised except that sometimes we feel like we are the only ones who are feeling the way we are feeling. Particularly if those feelings are the more negative or 'taboo' feelings of depression, despair or anxiety and frustration. So first I must say thank you to all who commented here and on Facebook because your comments helped me to begin to process my feelings and start moving forward.

For example, as I was responding to comments on Facebook I realized that for me the act of Acceptance is ultimately an act of faith - faith that I can acknowledge my current reality without fear because I know the universe or God (or whatever you might believe in) has better things in store for me, I must just keep moving forward, take the next step. Acts of faith give us great power to relax a little, stop trying too hard and let go.

I also had a session with my therapist and as I talked to her about my previous 2 weeks which included fighting with myself over my half-marathon performance and fighting with myself about how I felt post-amazing-vacation she looked at me and said, "It sounds like you are doing a lot of judging." And a little light bulb went off in my head! Judging is exactly what I was doing! I was judging my feelings and I was judging my experiences and I was giving myself a very hard time.

It is so amazing when that light bulb of awareness goes off in your head because all of a sudden the stuck part of your brain begins to dissolve a little bit. Now I had some light streaming in to the fuzzy gray cloud that was fogging up my mind. (My therapist helped me realize where I felt stuck and what the stuck looked like and how I could try to change the stuck and this was a great exercise.)All of a sudden I could look at the Merry-Go-Round that was spinning in front of me and see a place to jump on. Or at least see a place to think about jumping on. Maybe even a few places I might like to try jumping on and see what happens when I do.

I think we allow ourselves to stay stuck for many different reasons. As my friend Somnath put it in his comment, sometimes we do it..."to avoid what we instinctively consider dangerous, perilous and burdensome." And I think this was happening for me. My automatic post-traumatic-stress-disorder response had kicked in right after (or during) my half-marathon, probably in some attempt by my psyche to protect me from any experience similar to cancer diagnosis or treatment. And once this kicks in it is hard to disengage from. But disengage we must. Although moving forward may sometimes feel "dangerous, perilous and burdensome" we must strive to do it anyway. We instinctively know that the road can be harder sometimes, there are emotions we don't want to deal with, there are experiences we don't want to face, there are realities we don't want to accept. But the real danger is staying where we are. Never growing, never learning about ourselves and our true potential, never finding out that we can make it through the un-imaginable and come out stronger than before.

Stuck

2010-03-14T14:09:00.000-07:00

I have been feeling a bit stuck for the past couple weeks. As I have written in previous posts I made an attempt at a half-marathon run and it provoked some PTSD feelings in me. These feelings have been so hard to get around, even with an amazing ski trip in the middle of it all. I guess one answer to the situation appears in the previous sentence; trying to "get around" the feelings. I know that getting around the feelings won't do me any good. I need to get THROUGH them. Since I wrote about Gratitude and Choice back in January I have been riding a nice wave of good feelings and these past few weeks have been the first true test of my new attitude adjustment. And I sort of feel like I'm not passing the test.

I mean I have been feeling lost, floundering, confused, lacking direction and completely unaware of all the choices I have. And in the wake of my over-the-top vacation I am feeling some let-down. How is it that you can have this fantastic, better-than-you-hoped-for experience and then feel like crap a day later? It feels a bit like a failure to feel bad after such a lucky and wonderful time. Sort of like how it felt like a failure to have to walk the last 3 miles of the half-marathon. Sort of like how it felt like a failure to get a recurrence of cancer.

I started to write about Acceptance a few posts ago and I am stuck there I believe. How many times can one person say to themselves, "It is what it is"? I know that saying it isn't enough. Believing it, knowing it, and then moving forward is the key. But I seem to be going around in circles saying, "It is what it is" and then not moving forward to the next moment. At least not moving forward in any specific, non-automatic way. Of course I am getting up every day and eating breakfast, working (though barely it seems), eating lunch, working a little bit more, making dinner, reading and going to bed. I am on auto-pilot and it sucks. How is it you can be aware of your problems and not be able to change them? You can be sitting in the middle of your life watching it seeming to go on around you and passing you by and trying to jump on board but hesitating. Scared, not sure when to jump or at what juncture, in what direction to jump. I feel like I am watching the Merry-Go-Round turning in front of me and I need to get on while it's moving, but round and round it goes and I stand by paralyzed.

So today as I write this I am hoping it helps me work through my feelings and I begin to make the choices that help me move forward, that help me jump in. I am grateful for my family and friends who support me through my ups and downs.

Of Friendship and Skiing

2010-03-07T13:48:00.000-08:00

Once upon a time there were two girls. Back in the Fall of 1983 The Admissions and Housing Gods at UMaine Orono decided to make them Freshman Roommates. One of these girls was a quiet, pudgy, jock (Me). The other was a talkative, skinny, Valley-Girl (Linda). And even thought their first impressions might have sent some alarm bells off in their 18 year old brains, the reality is that they were more alike then they realized. Somehow these two girls hit it off and spent the next 5 years living together and growing up while at college. I am so very grateful to the hand that placed us together way back then.

This past week I got to spend 4 days skiing and hanging out with Linda. It was such a gift! We haven't spent that much time together, just the two of us, since way back in our college days. And if I needed any reminder of how blessed my life is I certainly got it this past week. Expectations were high for me and Linda. We had been planning a ski trip for 3 years and due to various interruptions (mainly my cancer diagnosis and recurrence and treatments) we hadn't been able to pull it off. But it finally did happen and all our highest expectations were met and exceeded.

The weather was amazing, 2 days with sunshine and bright blue skies, and all 4 days with low wind and warm temps. The Mountain was regal by day and night. The snow on the slopes was just right, no ice. The crowds mostly stayed away so there were no lift lines and very few people coming down the slopes with you, at times I was on a trail all by myself or with Linda and the beauty and quiet was enthralling. The hot tub was warm and inviting under the stars and we could watch the grooming machines on the mountain prepping the snow for the next day.

And best of all the company was so energizing. I felt we fell into our old ways, but better. We have been through a lot, both individually and together. And we were so comfortable together. We laughed and drank and ate and played cribbage. We discussed spirituality, blogging, skiing, motherhood, politics, sex, families, friends, and who we thought was going to win American Idol. We created an experience to feed our souls for a long time to come.

More Lessons from a Half-Marathon

2010-03-01T14:12:00.000-08:00

I have been spending much of the past week recovering from my half-marathon attempt. Yes I still call it an attempt despite all your convictions that I did a great job and I should be proud and I am amazing and I did finish after all.

During my recovery I was amazed to find myself in Post-Traumatic Stress Disorder mode. Sunday I was basically on the sofa with a headache and aching legs that wouldn't go away no matter what. I seemed to be doing okay come Monday but on Monday night I was dealing with some sort of lactic acid overload and felt as if I had been plugged into a socket. This feeling scared me and unfortunately reminded me very much of how my body felt on the night or two after I got my chemo treatments. All those toxic chemicals coursing through my veins would have me buzzing and it was hard to sleep. Once I got past this lactic acid overdose I then had this oddly familiar nausea and strange taste in my mouth that also reminded me of chemo. I am wondering if my body was just reliving it's worst times due to post-traumatic stress or if the lactic acid and the real physical stress on my body just created those same symptoms. Regardless it was not a fun time. Any reminder of those experiences puts me into a bit of a depression. And when I start to feel physically fragile I start to feel anxious, I just hate that feeling. By Friday I had realized all that was going on and was able to look at it more squarely. And this helped me to move forward.

The other thing I have been thinking about recently is the idea of acceptance. I have been reading the book, "Simple Abundance: A Daybook of Comfort and Joy" by Sarah Ban Breathnach which my friend Marie recommended to me. Sara talks about accepting our current circumstances or reality as a way to begin the process of change. As I read her words about acceptance I realized I did not accept the reality of that half-marathon. More precisely I did not accept that it wasn't going exactly as I had planned. And I did not accept that I was not some amazing runner who suddenly was going to break some age-group record through the sheer force of will and amazing physical strength and endurance that would come miraculously from somewhere as I sprinted to the end in a glow of glory. And by not accepting that I am a slow runner who has only run 10 miles once and who just started running again in August of 2009 and who has been through 2 rounds of cancer treatments and realistically it was okay for me to walk the last 3 miles I made things harder for myself. And all the crying, praying and cursing was not going to make it easier. But accepting it as my current reality might have helped. It might have taken the pressure off and made me realize that this was just the beginning and from here I can do anything I want to do. If only I could have said to myself, "It is what it is. I ran 10 miles, I'll walk the rest. That's my reality for today, it's not my reality forever." Just saying it now feels like a relief and a bit of a joy too.

Now can I say that about bigger things in my life? And smaller things? I hope so. As Sarah says in her book, "Acceptance illuminates reality so that we're better able to see the next step." Today I choose to make acceptance a part of my life, just like choice and gratitude. This doe not mean giving in or giving up. It means accepting this moment and moving forward. Without the acceptance you can get stuck and I am done with getting stuck. I am grateful for the experience of the half-marathon and all it continues to teach me.

Half Marathon

2010-02-21T17:40:00.000-08:00

This is going to be a hard one. My first (well technically second) post about choice and gratitude and I am feeling not so great. You see I ran my first ever half-marathon today, and it was the hardest elective thing I have ever done. But I made the choice to do it. I made the choice about 10 weeks ago. I was delusional when I made this choice. A few rational people tried to warn me not to push too hard too fast. I mean when I think about it, a year ago I was heading into 5 weeks of radiation and all new meds and my body being thrown into menopause. And I couldn't run. In fact I started walking again in July 2009 and then slowly stared running, and ran right into a choice that may not have been the best for me. But I am competitive and stubborn, and I wanted to once again show cancer who was boss. None of this waiting around, recovering, just get up and get going..hard! In hindsight maybe not the best choice I have ever made, but it was my choice to make, I was taking some control.

So today when I was running and I hit the wall at 10 miles and had to start walking I was so disappointed. I cried. This was not the way it was supposed to be. It felt like failure to me. And then I wanted to quit because it hurt so bad, even to walk. And I tried to remember everything I have gone through with my cancer treatment and how difficult that was. And maybe that helped me not quit. I mean quitting was never really an option but it definitely crossed my mind more than once in those last 3 miles. So I continued to walk and occasionally jog and cry, pray and curse.

While I was walking, crying, praying and cursing I began to think about this post and what I would say I was grateful for. I struggled with that for a while and then cried some more. But then I began to think about Mark and Bob who we met at around mile 5 and ran with until mile 9. And it was a beautiful day, the sun was shinning and we ran along the coast with a gorgeous view of the ocean at the start and the end. And the people who organized the race did such a great job. And my husband and daughter who came to cheer me on at the end. And my running partner's family who followed us around in their car a bit and cheered us on.

The thing I am most grateful for is a wonderful new friendship with my running partner Danielle. I am so grateful that back in the summer she offered twice to walk with me as I was recovering from treatment and waiting to start running again. And I am so grateful that my husband and my therapist encouraged me to take her up on her offer. And I am so grateful that I eventually did. Danielle was running but enjoyed walking on her off days. Eventually we started running together and I was able to do more than I ever would have on my own. And as we ran we told each other about ourselves, our families and our funny stories. And in the last 10 weeks we have not missed a day of running together (three or four days a week). We motivate each other and we are each others reason to wake up at 5 am and go out into the cold, dark early morning to run.

Happy Birthday To Me

2010-02-15T15:49:00.000-08:00

Today is my 45th Birthday and I am so grateful! Yes I am happy to be 45 years old! Birthday's are something to be cherished these days. And so much has changed for me in the last three years that 40 actually feels like another lifetime.

Three years ago I was shopping for hats, scarves, mastectomy bras and a fake left breast. One year ago I was recovering from my second CAT Scan-guided needle biopsy on my First Thoracic Vertebra to diagnose metastatic breast cancer. I was awaiting meeting with my oncologist to discuss treatment of this metastases. I had stopped running due to pain caused by this recurrence. I was living in what I thought was my worst nightmare - my cancer had returned in very short order.

What I have found over the last year is that I can make it through my worst nightmare and come out the other side stronger. I am stronger physically, mentally, psychically, and spiritually. In fact in 6 days I am going to run my first ever half-marathon! A year and a half ago the most I had ever run was 3.1 miles. I had to take 6 months off from running due to my recurrence. But now the longest I have run is 10 miles and soon I can say 13.1 miles!

I owe the great change in my life to friends, family, God, choice and gratitude. I am so grateful for so many things. And this new attitude of gratitude and realizing that I have choice, that I can choose how to deal with the big and little things that come my way, have brought so much peace and joy to my life. I still have my down times and there are many moments of fear, anxiety, depression and despair. But I am managing to focus on the good things and when those dark times appear I remember choice and gratitude.

This has done so much for my way of life and my recovery that I have decided to focus on a year of Choice and Gratitude. I am challenging myself to write at least once a week on this blog about choices I make and moments of gratitude. Both the big and the small. I hope it will not be too self-indulgent. I have realized how important gratitude is to me and hope that I can share that with you.

Tonight I am grateful to enjoy time with my family and all the special Birthday wishes from my friends. Thank you all so much. I am grateful for you!

Choosing Gratitude

2010-01-10T13:02:00.000-08:00

I had an epiphany of sorts. It wasn’t something that happened in an instant but rather an awareness that slowly grew and started with the word “Choice” and ended with Gratitude.

For those of you who have been reading my blog you know I have been on an emotional rollercoaster over the past several months. And in reality I have been on a search for the past 3 years. A search for meaning in a time when nothing makes sense. A search for hope when it feels all is lost. A search for myself when it seems I had disappeared. Three years is a long time to search.

I have been fortunate to have family, friends, doctors, nurses, and a therapist who have stood by me during this search. I imagine it is a painful thing to watch and I know for my family it sometimes took over in a way that was unpleasant to say the least. But here I am on the cusp of a new beginning and very hopeful for the first time in a long time!

As I said above, it all began with the word “CHOICE”. My therapist gave me this word. A simple concept in theory but not always an easy concept to carry out in life. My interpretation of that session was that I have a choice, not only in the things I may or may not do everyday or the way I treat my cancer or the pair of socks I put on in the morning. But in the way I deal with every moment of the day. I have a choice to react with anxiety, fear, anger and despair, or to choose to react from a different place. And this simple idea gave me peace in a way I hadn’t experienced before. I could CHOOSE to react with calmness, quietness, love, faith or hope. Simple no? But powerful to me!

So little by little I started to change. I noticed the times I remembered that I had a choice. I noticed that things were better when I exercised this choice. Sometimes I forgot and my days would slowly spin out of my control. But sometimes I remembered and my days would become peaceful.

Then it was time for the Holidays, and a thread started on Facebook about being Thankful and commenting on what we are thankful for over the month of November. This got me thinking about all the little and big things I am thankful for. Another slight shift in my thinking piled on top of ‘choice’. The holidays tend to be times that are stressful and this year was no different. It is my cancerversary time, crazy with Holiday preparations, and work was especially busy during December. Anxiety and fear were starting to pile on. But I fought it back as much as I could with ‘choice’ and ‘thankfulness’. And having the time to be with family and friends was a great reminder of so many things I am thankful for.

Directly in the midst of Christmas and New Years I had a quarterly PET Scan scheduled. This is generally a very high anxiety and fear time for me. And I was anxious, as my friend Jody can attest to when she talked with me the night before the results. But I was not as overwhelmed with the feelings as I usually am. Here again I had the benefit of ‘choice’ and ‘thankfulness’ and I had been reading a wonderful book entitled "Living Life as a Thank You ; The Transformative Power of Daily Gratitude" by Nina Lesowitz and Mary Beth Sammons.

The quote that starts off the first chapter is “Don’t be concerned about being disloyal to your pain by being joyous” by Pir Vilayat Inayat Khan. Now this may not mean anything to many of you and others will get it right away. For me it was like a light bulb went of in my head. I was holding on to my pain and fear. I was afraid that if I didn’t stay in the fear then I would get devastatingly hurt again by life as I had twice already. I was also afraid I would jinx things by being happy or expecting the best as life had already showed me it can dish out the worst with one crushing blow. And finally I did not want to let go of the pain because if I showed happiness and joy then people might not know how truly horrible this cancer experience has been. All things made up in my mind by the enemy, fear, anger, despair. And as my friend Alison Popky said when I told her this, “Letting go is scary…even if what you are holding sucks.”

So I decided to let go. I let go as much as I could. There is still some anxiety, fear and sadness of course but I am ‘choosing’ not to focus on them. I am ‘choosing’ to take my life back from cancer and the negative emotions that come with it. I have given up 3 years of my life and that has to stop now. I will be okay no matter what. And I will have fun and be joyous. I will do the things I want to do and not ‘wait to get the results’.

So here I am today. I started with “choice” traveled through some thankfulness, the Holidays, a Pet Scan, letting go and have landed in Gratitude. For me the power of gratitude is just starting to work its magic in my life. Being grateful does not mean pretending that everything is honky-dory. To me living with gratitude means knowing that things will most definitely not always be honky-dory but choosing to focus on the things that are good and hopeful. Choosing to focus on the things that make me happy and have brought richness and meaning to my life. The big and the small things. Some days it is hard and other days it is easy. But each day I will strive to focus on gratitude. It makes me happy, it makes me feel good.

Does this mean that I am grateful for cancer because it has brought me to this point? HELL NO. But I can’t help but be grateful for some of the things that have happened in the wake of cancer. And I choose not to go crazy thinking about whether or not I would have gotten here without cancer. It is what it is. I choose to move forward from here. I choose to find happiness and live a full and joyous life. I am stronger than ever before and I choose gratitude!

3 Year Cancerversary

2009-12-18T09:04:00.000-08:00

This term ‘Cancerversary’ is used by many in the Cancer Community and generally defines the time when your life changed due to cancer. The exact date of a ‘cancerversary’ for any survivor is a personal, individual moment on the timeline of their life. Some use the date of diagnosis, surgery, the start or end of chemo or the end of all treatment. I consider my Cancerversary to be the day I had my official diagnosis from my Surgeon, which happens to be December 18th, one week before Christmas.

So today I observe my 3 year Cancerversary. I was going to write ‘celebrate’ but realized it doesn’t exactly feel like a celebration, at least not yet. I mean maybe someday down the road it will feel more like a time to party and feel glad that I am so far away from that one moment in time. But I am not there yet. I am still too close to it all.

And when I think about how to mark time related to my cancer it gets confusing. There really are so many dates. The day I found the lump, which was November 27th 2006. I saw my OB/GYN doc on December 1st who orders a mammogram and ultrasound. These tests were done on December 8th. I saw a surgeon about a needle biopsy on December 14th. I go back that same day for the biopsy as the surgeon thinks it is important and now I know things are bad, but still hold out some hope.

And then on Monday, December 18th as I am about to go help out with my daughter’s Brownie Troop after school I get the call from the surgeon, and my life has changed for sure.

After that there are many more significant dates stamped on my timeline. Mastectomy Surgery on January 8th; First AC chemo on February 6th; Taxol and Herceptin started on April 3rd; Last Taxol chemo on May 15th; Radiation went from early June to mid July, 61/2 weeks. I continued Herceptin until March and got my port-a-cath removed on April 1st. There are many other somewhat less significant dates along the way. As I was saying to my friend the other day, from November 27th 2006 to April 1st 2008, I went no more than 3 weeks without seeing a doctor or having a test or getting a shot or doing something related to my cancer.

And shall we begin the second timeline? October 2008 I start feeling some pain in left shoulder blade but expect it is due to activity like running, lifting weights, yoga and shoveling snow. It comes and goes. Blood work from my October oncology visit is fine. On December 30th 2008 I see my Radiation Oncologist for a final check-up, it has been a year and a half since I finished radiation. He says I look great and I don’t need to see him anymore! I happen to be seeing my surgeon for a 3 month check-up a week later in January 2009. It is 2 years since my surgery. I mention the shoulder blade pain to her and she suggests a bone scan and chest x-ray, she is thorough and likes to be sure things are fine. She is about to give me the okay to start 6 month check-ups. I go for the bone scan and they see something they want to check further so I am scheduled for a PET Scan. This comes back with a spot on my First Thoracic Vertebra and the circus has come to town again. Begin the treatment treadmill. I go for a CT guided needle biopsy on January 29th. It totally sucks (read my blog post called ‘Biopsies-R-Us’) and it is inconclusive. So on Friday, February 13th (yes that’s right Friday the 13th and it is 2 days before my 44th birthday!) I go for another biopsy, at a different place, which goes much smoother and is conclusive; the breast cancer has spread to this one spot. So I go through more Radiation, through the month of March 2009. I started on shots of Lupron and pills of Femara and infusions of Zometa. These treatments continue. I get PET Scans every 3 months, the next one is December 29th.

So many dates fill my head. I am a walking calendar. I feel like the circus has not stopped since that day back in December when my doctor called me with the news. Three years of the circus is quite enough. I am done now. I would like to join the monastery instead. I am hoping that I will land somewhere in between the 2, between the circus and the monastery. Just a normal life with different dates filling my head. Like a date night out with my husband.The date of my daughter’s next concert.The date of our next family get-together. The date of my next trip to a new land. The date of my next lunch with a friend. The date of my next chat with my online friends. The date of the next road race I will run. These are the dates I want to fill my head and my life. These are the moments I want to celebrate.

So for me, my Cancerversary will be a day to honor the struggle, remind the cancer I have won, and celebrate LIFE and all the truly important dates still to come.

Thankful

2009-11-14T10:17:00.000-08:00

As Thanksgiving draws near there has been much talk on FaceBook about what we are thankful for and trying every day of November to post these thoughts. It has made me think about all the people in my life who I am thankful for especially those who made/are making my experience with cancer much more manageable. These are my supporters and Co-Survivors. They say it takes a Village to raise a Child. I think it takes a Village to Survive Cancer. So this is a big ‘Thank You’ note to my Village!

The Village consists of so many people in so many different capacities, just like a real village. There are the many families in town who I know to varying degrees that cooked us meals, walked the dog, and sent care packages with everything from peppermint candies and magazines to jammies and socks. There were phone calls and emails and letters. There were flowers and fruit baskets. And there were donations to foundations in my name. There were trips to appointments as far away as Boston. My daughter’s school supported us as well. Teachers, counselors, the librarian and many others were aware of her potential needs and always ready to help. And of course the multitude of medical staff who cared for me, my nurses, doctors, technicians, administrative staff and even the valet car parkers at Dana Farber who smiled at me every day when I arrived for radiation. And currently my Village has some new members from the world of Twitter and FaceBook. I have been fortunate to ‘meet’ many people who are always ready to support and encourage me, to laugh and cry with me.

When it was time for surgery I called my good friend Linda. Linda has a husband, 3 kids, dogs, cats, chickens and some other creatures to care for, but without hesitation she jumped on board and started taking care of me too. She stayed overnight in the hospital with me after my mastectomy. She accompanied me on 5 of my 8 chemos, driving 40 minutes to my house to pick me up and take me another 45 minutes to the hospital, spending anywhere from 5 to 8 hours with me hooked up to toxic chemicals, playing Cribbage while I was spaced out on Benadryl and watching Ellen, The View and other more dubious day time TV shows in the chemo room. She also took me on many of my trips to Boston for radiation, PET Scans, and visits with my doctors. She makes me laugh and treats me like I am the same person I have always been. That is the beauty of 25 years of loving someone I guess.

And of course there is my family. My extended family helped with visits from Virginia, many talks on the phone, trips to appointments, and humor. My Dad gave us a trip to Florida to visit him, rest and recover. My In-laws were also a huge help bringing us food and taking extra special care of Sophia. And during my first radiation treatments my Father-in-law drove me almost every day to Boston and back while my mother-in-law took care of Sophia because it was summer-time and she was out of school.

My Mom came to stay with us for my surgery and spent a week taking care of us every month for 4 months while I had chemo. She also came to help out during radiation, often driving me to Boston. She cleaned my house and made all our meals and did our laundry and generally made life so easy for us during such a difficult time. Knowing she was here allowed me to relax and know everything would be taken care of even if I didn’t lift a finger. My daughter Sophia continues to be a huge source of inspiration and motivation. It was so hard going through this with her, but without her I don’t know how I could have done it. And watching her mature and grow during my 3 years fighting cancer has been so amazing! And last but certainly not least is my husband Nick. He has struggled with my cancer in a way only your truest, loving-est life partner ever can. And he has remained and always will remain my strongest source of comfort and support. He does it in a quiet way. He sat by the bed and watched me as I slept. He took care of the business and the house and the daughter and the dog for the many months I was unable to. He came to realize in a more profound way all I am to him and now reminds me of it daily with a hug or a kiss or just holding my hand.

I am so thankful for all of these people. The list is long, and I am so grateful for that. I am one of the lucky ones. It is hard to see that in the midst of all the badness. But knowing how hard others have it because they don’t have a village to support them has made me realize how fortunate I am. Thanks so much to everyone who has supported me and continues to support me. And if anyone ever needs to start a Village for themselves please let me know, I’ll be there!

Post-Treatment Stress Disorder: Healing and Dealing

2009-10-27T17:24:00.000-07:00

So you’re done with treatment, you’ve had your last chemo, your last radiation appointment and you don’t have to go see any more doctors, nurses or hospitals for at least 3 months….now what do you do? I think that the majority of people would assume, “WOOT! WOOT! I am free and I can get back to my life now! Yea!” But I am here to tell you the reality is a bit different, at least for me. Yes there is some of that relief and excitement of being over a MAJOR hurdle. But there is also fear and anxiety, which post-treatment have been much more prevalent for me than the joy. In fact, since I was diagnosed with breast cancer almost 3 years ago I have not experienced much joy in my life, but I have experienced many days and nights and weeks filled with fear, anxiety and depression.

When I was going through treatment I have to say that I lived very much in the moment. I was focused very much on the present and getting through each day, each treatment, each appointment, one at a time. I did not look at the big picture, at least not after that initial shock of being diagnosed and jumping to a bleak future in my mind. And by staying in the present I was able to get myself through. If I could just make it one more day and then one more day eventually I would be through to the other side of this hell. And what I found in that present was that I was good at fighting cancer. And I was good at being a patient. I was strong and I had a good attitude. And people kept telling me what a good job I was doing and what an inspiration I was. My Radiation Oncologist said to me “You are and A+ patient!” And like the story goes, cancer even made me better looking because since I’ve had cancer everyone tells me how good I look, which they never told me before!

Then treatment ends. And the constant attention from your doctors and nurses and your family and friends slowly subsides. But inside you are not ready for that. My immediate reaction to “So, we’ll see you in 3 months” was “Oh crap! That’s too long!” Because even though your body is ready for a break, your mind is just getting started. Now you don’t know what to do with all this time on your hands and extra time is just what your mind starts to feed on. Every ache, twinge, soreness, pimple becomes a source of obsession and worry. You are so scared that left unattended the cancer is sure to come back. No one is watching guard anymore, except for you and your overworked mind.

As friend and Breast Cancer Survivor Marie Ennis O’Connor put it, “My days were my own again, but I was unsettled and lost. My emotional and psychological landscape had changed dramatically and I needed to find a new way to be in the world. While the battle for survival ended, a new challenge was beginning – how to make sense of the experience of cancer and integrate it into my new normal. Now the time for real healing begins.”

Friend and Breast Cancer Survivor Jody Schoger put it this way, “…I think the challenge of cancer actually begins once treatment is done, and you must adjust to a new body, an altered mind, and a sense of betrayal about the nature of life itself.”

So I am on the road to healing and dealing with life after cancer. I have lived through a diagnosis and treatment and then even through my worst nightmare…a recurrence, the words ‘metastatic disease” and more treatment. I am grappling with carrying on and fighting depression that is sometimes worse than the cancer ever was. I stand in the shower for much too long swaying back and forth under the hot water not wanting to leave the sanctuary of that tiny warm space. I want to curl up in a ball and hide. I want to lay in my bed with the covers pulled over my head and rest in the darkness. I want to wall myself off from the world and everyone in it. This is truly how it feels many days. And I am writing this to let people know that it is a reality many people face. And everyday I fight against the forces of evil. I get out of bed and go for a run. I call a friend and have lunch. I drive my daughter to school. I work with my husband. I walk the dog. I go through the motions every day. I “fake it till I make it”. Some days are easier than others of course and there are good times. But it is constant vigilance right now. I stand guard. I have hope that as time goes by the depression and anxiety and fear will diminish. And hope is a powerful thing. It is with hope, faith and love that I get through to the next day, and the next. And thankfully my family and friends are here to give me their hope, faith and love too.

To read more from Marie please visit “Journeying Beyond Breast Cancer” by clicking on the link at the right side of this page.

To read more from Jody please visit “Jody’s LiveStrong Challenge” by clicking on the link at the right side of this page.

Sick and Tired of Feeling Sick and Tired

2009-10-13T09:52:00.000-07:00

Sometimes having cancer seems like the ultimate insult from my own body. I mean when did my body decide to have a mind of its own?? When did it let in the enemy?? I am guessing from what I have read that the enemy has been with me for years, unbeknown to me. And perhaps I can’t blame it entirely on my body as I know it had some accomplices. My guess would be that pollution, processed food, chemicals sprayed on food, toxins in the ground water, toxins in my health and beauty products, toxins in our cleaning supplies and who knows what else, have contributed to my cancer.

One could go crazy trying to take control over all the accomplices to cancer. I have gone to all natural soaps, shampoo, and lotions. I use natural dish soap and detergents around my house. I try to buy organic foods and eat very little to almost no processed foods. I happen to live in the tailpipe of the country however, so air pollutants are hard to avoid. But we can control these variables only so much, and keep our sanity at the same time!

So with all these attempts to control the outer forces of evil in place, I then turn again to my body. How could it betray me like this?? I remember that once I was diagnosed with breast cancer I couldn’t wait to get the cancer surgically removed. Now that doesn’t mean I was excited about surgery, far from it, but what it means is that each day that I walked around with cancer in my body I felt a certain despair and disgust. I would look at the offending breast with disdain. And after quickly weighing all the treatment options I went ahead with a left side mastectomy. It felt good to have the cancer gone.

After treatment for a recurrence I find myself again in a position where I feel betrayed by my body. I feel fragile and vulnerable. I feel like my life is not my own…. and I hate that. Just last weekend I was completely depleted and had to sleep late and rest a lot and take a day off from exercise. Now I don’t mind sleeping late and resting. Those of you who know me know that I love to wake up at 11am on a Saturday morning and that the Olympic napping gene runs in my family. But I like to do these things on MY TERMS not my body’s terms, and certainly not cancer’s terms. And I realize that this isn’t just my body’s fault. It has been through a lot. It has been run through the rigors of chemo, radiation twice, and various other meds and procedures. My poor body was aged instantly and thrown into menopause. And I am here to tell you that instant menopause sucks. There is the weight gain, and the mood swings, and the hot flashes. It is all true! My eyes had trouble after chemo and my knees would get a bit achy and I would be stiff or sore. And occasionally a doctor would say, “Well you are getting older!” And I thought “Hell, this can’t all be because I am in my 40’s now!”

I know there is a fine line between kicking cancer’s butt and allowing yourself to recover. But that line is hard for me to walk down. I want to work hard and live my life and prove to cancer that I am in control. But sometimes my body, and honestly my mind too, can’t hack it. And that is when frustration sets in. And frustration doesn’t help anyone but that is where I find myself, the line between kicking butt and recovering is painted with frustration. Each day I work to erase that line. And I know some of this frustration comes from feeling like I’ve served my time and now I deserve a “Get Out of Jail Free” card. Like I should never have another ache or pain or sickness in my life. But that is not the way things work. I guess instead of being upset with my body I need to work with it. Team up and fight together against this nasty intruder. I need to use my mind, body and soul to get my life back to where I want it. Right now it feels like constant vigilance is required. Here’s hoping that the further I get from cancer the closer I get to me.

Twisters

2009-09-27T11:19:00.006-07:00

No, this is not a story about tornadoes. Although the Twisters I am writing about can bring on a huge storm of support, caring and healing when times are bad…or good.

I am a social networking addict. There, I’ve said it. That is part of the recovery right? First you have to admit there is a problem and then you can move on to fixing the problem. But I’m not really that bad. I only use Facebook and Twitter. I have 50 ‘friends’ on Facebook. Yes, that’s all, just 50 friends. A very small number for a self-proclaimed social networking addict. On Twitter I have 150 followers and I follow 180 people. This may sound like a lot but these really are very small numbers, and some of my ‘followers’ are phonies. And while I do need to figure out a way to control my time spent on Facebook and Twitter I am here to explain that social networking has its good points.

I am a cancer survivor who is still in treatment and getting frequent scans to be sure that the cancer is not coming back. This is a very stressful time for me and there are only so many ways to deal with this stress. I jog, take walks on the beach with my family, and listen to meditation and affirmation recordings. These are all great and very useful but they are not very interactive.

That’s where Twitter and Facebook come into play. But there is a dilemma. Do I post about my upcoming cancer tests or not? I debated this issue for a while in my mind. I really wasn’t sure what to do. It seems like a very private thing to post on such a seemingly public forum. And I sometimes worry that posting it on Facebook or Twitter looks like a desperate plea for attention. It feels a bit like airing your dirty laundry in public, like showing up on the Maury Povich show to reveal some dirty little secret. I guess this is how cancer wants us to feel. It wants us to stay isolated so it can beat us. I guess this is why there is a stigma associated with cancer, because sometimes it does feel like a dirty little secret.

But my experience with the men and women I know on Facebook and Twitter is unique and invaluable. In fact I have coined a phrase with the women I know on Twitter. They are my Twitter Sisters or as I now call them…my Twisters.

My Twisters give me unending support, encouragement, and positive energy. They post songs that make me want to sing along. They light candles for me in tiny, beautiful churches in Ireland and post pictures of these churches. They post links to very funny You-Tube videos that make me laugh. They remind me of how strong I am and how strong I can remain. They tell me things I want to hear. They make me feel better, it actually works. I came home on Tuesday, after my most recent PET Scan (which was all clear!), to Twitter and Facebook and all sorts of positive comments from my Twisters. And it helped me feel so much more positive, so much less stressed. I felt so much more like things were going to be okay, no matter what, but mostly I just felt a sigh of relief, contentment, a belonging. My Twisters were rallying around me, they were circling the wagons. I was being cradled in their supportive cyber-arms from all around the world and it felt so good. So say what you will about the evils of technology and social networking, but I am sticking with my Twisters. They know how to make a girl feel wanted, needed, supported and loved, all through a blinking computer screen. Power to the Twisters!

Cancer is a Full-Time Job

2009-09-18T17:53:00.000-07:00

I have said many times that Cancer diagnosis, treatment and recovery is a full-time job for patients and caregivers. So I tried to imagine what the write up in the newspaper would look like.

Job Description: Cancer: seeking people of all ages to participate in long-term full-time job opportunity.

Tasks and Responsibilities:
Will be required to change your life course instantly to begin the job.
Will be required to communicate with physicians, nurses and insurance providers on a daily basis.
Will be responsible for orienting and mentoring new staff members.

Applicant Qualifications:
Must be willing to change your appearance as needed for the job - for example; lose your hair, lose weight, gain weight, body parts removed, body parts adjusted, body parts rebuilt.
Must be capable of translating foreign languages such as medical jargon, insurance codes and bureaucratic paperwork.
Must be willing to travel on a daily basis and attend meetings frequently.
Must have good organizational skills including; filling out and handling medical history forms, making frequent calls to various medical staff and medical institutions and scheduling appointments without overbooking.
Must be a hard worker, willing to put in overtime.
Must be of sound mental, emotional and physical abilities as all will be severely tested.
Must be tough as nails.
Must be made of Fortitude, Courage and have an Indomitable Spirit.

Caregiver Applicants must also have the following qualifications:
Chauffeur, Cook, Babysitter, Counselor, Dog Walker and Back Scratcher.

Benefits:
No Pay, No Vacation time, You MUST show up when you are sick.

Benefits for Caregiver Position same as above but also include:
Unending Love and Gratitude

Experience is helpful but not necessary; there will be plenty of on-the-job training.

Cancer is an Equal Opportunity Employer. Cancer does not discriminate based on age, sex, race or social status.

Please address your resumes to Hell, Attention Satan.

I did not apply for this job but was drafted against my will. I was wishing there was a trial period and the boss would decide to fire me, but apparently I am really good at this job, so they promoted me to Stage 4. I guess the boss figures I can handle the really tough customers. So now my job is to tell cancer where it can go if it wants to make a return. Our company policy is no returns!

Twitter Breaks the Silence

2009-08-28T14:57:00.000-07:00

Twitter has become my own personal private secret cancer fighting support group. It is like this entirely separate thing that is happening in my life. I feel like I’m on the lamb or bootlegging or something else very lawless. But it is wonderful. So please keep it a secret for me.

It is wonderful because I have found all these people who know how bad it sucks to have cancer so you don’t even have to go there with them, but it is okay if you do because they totally get it. We share information and ideas. We share moments of triumph and sorrow. We share the latest medical news and the latest grassroots efforts to fight the disease. We share support and hope and strength. We come from all walks of life and live all over the world but we manage to come together on Twitter. And perhaps the anonymity helps too. I can put my soul out there in a way I might not with someone face to face. Or maybe it’s just the writing. Ideas spread and you get swept up in it and you feel like you are a part of something much bigger than yourself. Like my name on a beam at Dana-Farber that will be covered with metal and no one will see but I know it is there and I am a part of something tall and strong and powerful.

But really it has been much easier to talk to people on twitter about cancer than almost anyone else. I mean I can talk to my husband, my dear friend Linda and to my therapist. There is my sister-in-law who is a breast cancer survivor and some women in town who are also cancer survivors. So really I am lucky, I have a handful of people who can help me out when I need it. But beyond that you can’t really talk about it with just anyone.

Perhaps it is related to that whole stigma and silence thing addressed in the video I watched recently from LiveSTRONG that I found through one of my new Twitter Friends, who happens to be featured in the documentary. (Go to You Tube and type in Stigma and Silence) There is a stigma that comes with a cancer diagnosis. People equate cancer with death. And no one wants to face death in any way, shape or form. Even if it is in the form of a friend who is suffering. Some people are just too scared, because it brings up their own mortality. And lets face it…it’s awkward to talk about death. It’s awkward to stand in the line waiting to pick up your kid from school and look death in the face and talk about baking cookies for the class Valentine Party.

And I can’t put all the blame on others for the silence because it was hard for me to talk about too. I remember when I was trying to figure out how to tell people I had breast cancer how uncomfortable I felt. I mean how do you say it?? I mean you are talking with some other moms in town about the usual, your kids, the next PTO meeting, good dinner recipes to swap, and the carpool schedule when you all of a sudden interject, ”Oh, by the way, did I tell you I have breast cancer?” I mean there is never a good way to say it and there is never a good time. So sometimes you just have to come out and get it over with. Luckily, in a small town news travels fast so telling one or two people meant the whole town knew quickly…my problem solved.

Sometimes when I talk to people I feel I am wearing a flashing neon sign across my chest that says “Caution: Cancer” with a skull and cross bones. And I feel them looking at that sign instead of me and then I see the wheels turning in their minds as they try to figure out what to say and what not to say and how to show they care but not to get too personal and how to get away before the “C” word enters the conversation. And sometimes I want to wear a different sign that says “Amazing Cancer Warrior Princess”. I want people to know. I want them to look at me and know I have been through hell and back but here I stand. I want them to know so I can help them or someone they know. I want them to know so they can be like, “Wow, you are so strong and rad dude!” But mostly I just want us to talk like there is no sign. We are just normal people on a normal day doing normal things.

I have been very fortunate. I live in a community where people really help each other. Many people did so much for me and my family and I am so grateful for that. Trying to get through cancer diagnosis and treatment is so unbelievably hard, and every kindness feels like a lifeline being gently tossed your way on the turbulent sea. Even a card or email, some flowers or a call can mean so much. If you know someone who is dealing with cancer don’t let them suffer in silence. Reach out to them in any way you can. Even if it is in 140 characters or less. Tweet!

Help

2009-08-17T18:25:00.000-07:00

I was talking with my sister-in-law recently (who is a 7 year Breast Cancer Survivor) about someone she knows who recently was diagnosed with breast cancer. This person was looking for some help and advice and support. It is one of the first things I did after my initial shock wore off.

I was lucky enough to have my sister-in-law to talk with. (Lucky in an unfortunate way, for both of us, if you know what I mean) I remember before my mastectomy I was very scared. I had mistakenly started to read about mastectomies in Dr Susan Love’s Breast Book. This book is called “the bible” for breast cancer patients and I understand why. It is a great book and I mean nothing negative when I tell you that it just isn’t the right book for me. There is so much information in the book that you can find the answers to all your questions. But I quickly realized that I am the kind of person who doesn’t need absolutely every detail of certain situations. I began to read about the procedure for a mastectomy and got no farther than the beginning of the description for anesthesia and getting a tube down my throat when I found that I was getting dizzy, short of breath and thought I might faint. Nick gently encouraged me to close the book and breathe. The next day I called Sue and spoke with her about her experience and she put me at ease. She didn’t say it would be easy or anything, she just told me how it was for her and that she knew I would be okay. I guess it was perhaps her calm manner that encouraged me to be calm.

And then before chemo started I was even more scared so I called Sue again and once more she helped calm me down. She made me laugh about things you might not really find funny but are so absurd that you have no choice but to laugh. Like when she told me about her chemo nurse coming toward her wearing heavy duty, clean-your-bathroom-type rubber gloves and a full face mask, carrying a bag full of meds that was going into Sue’s body. On the bag were all sorts of toxic warning labels that if this gets on your skin they take you to the “haz-mat” room and hose you down with special solutions and keep you quarantined for 5 days (not really but something like that). And it made me laugh and I knew I would be scared but I would be okay too.

I also, like many other people, turned to the Internet where there is so much information it can easily be overwhelming. Even though I know that there is such a thing for me as "too-much-info" I sometimes couldn't help myself. I remember when I was first diagnosed and looked on the internet for some info. I was completely sucked in to the search. And not all the info out there is helpful or reliable or factual. I would sit in front of the computer and get dizzy, short of breath and feel like I might faint and Nick would come and gently suggest that I turn off the computer and remember to breathe. I often went to the computer to look up info about the chemo drugs I would be taking, or side effects of the other meds I was given. And I would look for other people who were going through the same thing as me. But no one is going through the same thing as me. There are many of us who suffer with life-threatening illness but we all have our own story to tell. There may be similarities but just as no two people are exactly alike neither are our illnesses, treatments, or reactions to treatments.

I found the Internet to be a place where my deepest fears could be realized in someone else’s horror stories. I had to remind myself that it wasn’t necessarily going to be that way for me. I’m not saying the Internet is terrible or that you should never look for info there, I’m just saying READ WITH CAUTION! And use a timer that beeps really loudly so you don’t spend more than 30 minutes at a time online! I would also suggest just hitting the most reputable sites; such as breastcancer.org or the Dana Farber website or debbiescancerblog.blogspot.com.

Finding the right kind of support in trying times is important. Don’t give up. Try the big places like the American Cancer Society or Komen for the Cure and ask your Doctor for help and suggestions. Read if that works for you but remember to take everything with a grain of salt. Try support groups if you want but be sure you are getting what you need and not getting in deeper. Go to a good therapist. Talk to your family and friends. And if you think I can help then please contact me. I will try my best to be calm, intelligent and funny and not tell any horror stories.

People Along The Way

2009-07-26T09:41:00.000-07:00

I remember lots of things connected to my cancer diagnosis and treatment, some good and some not so good. The people I have met during treatment are some of the good memories and will not be forgotten. This is about the fellow patients, mostly women due to the nature of my cancer, who have fought beside me in chemo or radiation.

I remember my first chemo treatment. I was scared *#@*less so Nick went with me to try and help me feel better. Once I got going and realized I wasn’t going to die instantly from the poison they were putting in my veins I relaxed a little bit. Across from me was a lady in an attractive head scarf. She was in her 70’s and had lung cancer. She was very matter of fact about the whole thing saying she was old and had a good life. She talked about her son shaving her head for her a few days ago, and shaving his own also in support of her. We talked only a little on and off because I was so nervous and still waiting for something terrible to happen. (Note to self, something terrible already did happen and now we were trying to fix it).Then there was Pat who was thin everywhere but her belly, due to cancer. Pat was always ready to deal with whatever was coming her way and was planning a trip to Georgia with her grown daughter to visit her sister. Carmen was younger than me and looked so scared that first day, I remember her well. I wanted to reach out to her and say it will be okay, it sucks but don’t worry, if I can do it then you can too. We came to know each other through our chemo treatments and I was happy I could see her on her last session and give her a hug and wish her all the best of everything.

There was the woman who had drawings her daughter had made for her to help her feel better during treatment. There was the man who had an iPod shuffle clipped on him that he wasn’t sure how it worked but was thankful that his daughter gave it to him with lots of music on it for his lengthy chemo sessions. There was the tiny older lady getting chemo that looked at the older man getting chemo next to her and said with a fire and spirit beyond her size, “We are going to beat this” and then gave all of us in the room a wink. All of us feeling like crap but none of us complaining. We were doing what we had to do.

Then there was Radiation…twice. Sitting in a waiting room, waiting to get zapped, you meet all sorts of interesting people. At Dana Farber the women all have one waiting room and the men have another, so I met women. All sorts of women, from all walks of life. And we go through this very emotional, personal, intimate experience together so we bond quickly and in a way that feels so important, though we rarely see each other ever again.

Maria, had lung cancer. She grew up in Italy but came to the US as a child with her family. She was getting chemo and radiation at the same time. I saw her go from strong and vibrant to weak, bald and frail, but she never stopped fighting. There was the woman who came in so excited she got a hair cut… that she actually had enough long strands on top of her head to go and get them cut. There was the “Talker”; so dubbed because she could talk to anyone about anything for a long time and did almost every day. There was Bev, strong and tough and helpful. She would help you with directions around Boston, advice on meditation tapes, and share her remedy for radiation burned skin. She was the one who had laughing fits in radiation; they would have to wait for her to settle down before they could start. (No moving during radiation, don’t want to zap the wrong thing!) There were the 2 women from Bermuda, staying in Boston for 7 weeks to get the best care. There was the young professional single mom who arrived every day in her wig and dressed for success, heading back to work as soon as her session was done. There were so many strong and amazing women, some with family or friends, some on their own; all doing what they had to do to fight this disease. We would chat about all sorts of things, share horror and success stories, cheer each other on, count down the days till we were done, and wish each other the best of luck.

These people showed me that we are more alike than we are different. We are all trying to survive, get to the next day and then the next and then the next. And we will make the best of each day that we get. To all those women and men who are fighting I give them my caring and encouragement and remind them “Move forward, I will be with you”.

Making Lemonade

2009-07-09T15:34:00.000-07:00

You know the saying when life gives you lemons you make lemonade. Well I got handed bushels, truckloads of lemons a few years ago when I was diagnosed with breast cancer. And by lemons I mean the variety of nasty stuff that comes along with cancer and its treatment. But I made lemonade out of as many of those lemons as I could.

Before I had my mastectomy I went to see a plastic surgeon to explore the possibility of having immediate reconstruction. The procedure we were discussing was called a TRAM Flap which involves a sort of tummy tuck as they take your ab muscle and move it up into where your breast was. (Yea, like I’m gonna do that!) As I stood there in my undies, socks and a paper Johnny open in the front, the doctor checked me out. Then he grabbed my belly fat in his hand and said it was perfect! In combination with having a small remaining breast I was the ideal candidate for the TRAM Flap procedure. Who knew that small breasts and belly fat could be so wonderful! I never did have reconstruction; but in the mornings when I stare in the mirror at my minuscule right breast and protruding belly I am content in the knowledge that they are perfect.

The next lemon to consider would be the loss of hair from chemotherapy. Now going bald rather quickly at the age of 42 was not a wonderful experience. Unlike babies, grandpas and Mr. Clean, women of any age do not look “cute” when bald. They make look heroic, strong, or European, but not particularly “cute”. To add to my misery Britney shaved her head, like the next day and made it look like she did it first and I was just getting in on the newest trend for hot, young (crazy) starlets. I differed from Britney in that I let my hairdresser shave my head rather than trying to do it myself and get my picture splashed across the pages of the Hampton Union (local mom goes crazy after witnessing Britney attempt to parent). My hairdresser started by cutting my hair short, but I said please just go for it, as it was falling out in huge clumps on my pillowcase, in the shower and in my hairbrush. What I found was that I have a beautifully shaped head with no strange bumps or divots and I never would have known this had I not gone through chemo. Also, losing my hair allowed me to stop getting it colored and just let the gray grow back in (saving me a bit of money too). And having no hair saved lots of time showering and post-shower, no hair to shampoo, condition, dry or style.

Now, during chemo I lost all the hair on my body….yes…ALL THE HAIR ON MY BODY. So this meant even more time saved in the shower with no shaving of the legs or armpits or any other body area. (A Brazilian bikini wax without the pain, cost or embarrassment for a prude like me!)

Next lemon…exhaustion. During chemo you get very, very tired. So with this tiredness came a free license to nap; anytime, anywhere, for however long I wanted. I think a free license to nap is only an option in our culture when you are under age 3 or over age 85, and is definitely thought of as decadent for a 40 something mom and wife. But napping became a requirement, part of the treatment, and I was an excellent napper! I could easily nap for 2 hours a day, and often did, and occasionally still do. The napping license never expires for cancer survivors!

Chemo also makes you feel sick lots of the time. My desire to eat was constantly in flux with the variables being how much I could eat, when I wanted to eat and what type of foods I craved or could tolerate. At the beginning of chemo I craved protein, and was known to pull into any fast food drive thru at any time of day or night for a double cheeseburger or an egg McMuffin. This phase only lasted for a week or two. Then it became harder and harder for me to eat and I could only tolerate certain foods. The good news was that I still wanted to eat chocolate and ice cream and my body tolerated them well (good body!) and the doctor said to eat whatever I wanted and not worry about cholesterol or fat or anything like that. So there were many nights in a row that ice cream was on the menu!

Along with napping and eating lots of ice cream another batch of lemonade was whipped up as I was allowed to say “No” to many things. Sometimes we are all trying to keep up appearances, keep up with our kids and keep up with what society says we “should” be doing. So that often means over-extending ourselves…you know who you are! But now I could say no to field trips and class parties and attending functions and volunteering at school events and baking cookies for the fundraiser and on and on. And I could do it without guilt or fear that someone might say I wasn’t doing my part.

The flip side of this was that I also got to say “Yes” to many things. Like people offering to cook my family dinners and muffins and cookies. I got to say yes to rides to Boston and baskets of flowers and offers to walk the dog. I got to say yes to so many wonderful people as they offered anything and everything to help me through. And I got to say yes without feeling guilty or feeling like I was a burden. Because I realized I would make lemonade for all these people too.

Name on the Beams

2009-06-26T15:01:00.000-07:00

Back in 1996 the Smith Research Laboratories were being built next to Dana Farber. As the building was being constructed of steel beams the children at the Jimmy Fund Clinic at Dana Farber would watch out the windows as the steel workers arranged the beams and the building grew. The kids would wave and the steel workers would wave back. Soon messages were sent back and forth with signs painted by the kids and hung in the windows, answered by signs painted on the beams by the workers. Soon well wishes and kids names adorned all the steel beams of the new building. A wonderful bond developed and hope and happiness was brought to the kids, their families and the steel workers. You can see a video about this experience at www.jimmyfund.org/movie.

Now a new building is being erected next to the Smith Labs and Dana Farber, it is the 14 story Yawkey Center for Cancer Care. And shortly after the beams went up names started being painted on them. There is a glass enclosed bridge between Dana Farber and the Smith Building that starts at the Jimmy Fund Clinic. This bridge gives one vantage point to see the building grow. Every day Jimmy Fund children and their families would fill the bridge and tape up papers with their names written on them, the way to request that your name be painted on the beams of this new building. Whenever I was at Dana Farber I would marvel at the new beams and all the brightly spay painted names. Then I heard that they were painting the names of adult cancer patients as well. So my new mission was to get my name up there. At this time (March 2009) I was going to Dana Farber every day for Radiation and found out that one of the women who was there every day waiting for her radiation treatments had got her name on a beam. I had to give it a try.

That very day Linda was with me and she helped me do it, I probably wouldn’t have been able to do it with out her as it was a bit emotional in a weird “I have cancer” sort of way. We went to the bridge and saw a few names taped up. Linda found a piece of paper and wrote my name in block letters and we filled them in to make them stand out so they could be seen from a distance. Then Linda found some old tape still stuck to the glass wall and we used it to tape up the paper. It took a few days before I could go back and check to see if my name was up yet. The next time I went to the bridge I saw my paper was gone. I looked up and way at the very top was "DEBBIE", written backwards and upside down in hot pink! I couldn’t stop staring or smiling.

So my new mission was to get a picture of it. One day Stacy took me to Boston and we tried to find a good angle and a place high enough. First we went to the 9th floor of the Dana building and looked out one waiting room window but we couldn’t see the side that my name was painted on. So a lady in that waiting room said go next door to the Smith building so that’s what we did. We decided to try the 9th floor there. Now this building is made up of lots of little labs. So we walked in a circle around the 9th floor until some very nice research people let us into their room and I took a few pictures out the window but it still wasn’t a great angle and it was dark and rainy that day. Then I discovered that there was another waiting room in Dana on the 9th floor that had a pretty good view so I got some decent pictures.

I was at Dana Farber two times this week and I can still see my name, I look every time I go. I just have to. I look when I have to go to the 9th floor. Thursday I got to show it to Nick. I look as I am driving away; if you look straight up when you take a right out of Dana Farber you can see my name, way up high. I smile every time I see my hot pink name up there. It makes me feel happy first and then honored and then a little sad. But mostly it makes me feel like I am a part of something much bigger than myself.

One of these days soon my beam will be covered with more steel and glass and whatever else, but I will always know it is there. I will even be able to go to that building, walk inside it, know that I am a part of it in so many ways. I am a part of the struggles that many will continue to go through there. I am a part of the care that will happen there. I am a part of the healing that will happen there. And by being a part of this thing that is so much bigger than me I am healed too.

To see stories about the Names on the Beams just google “names on the beams at Dana Farber”.

Angelica - Warrior Princess

2009-06-12T05:19:00.000-07:00

I’d like to introduce you to Angelica. She was my protector and fellow warrior during my most recent radiation treatments. But when I first met her it was a different story.

When you have to get radiation one of the first things you do is go get “mapped”. Yes, they make a map on the part of your body that is getting the treatment. With the first treatment for cancer to my left side of my chest they made little, tiny tattoo dots. These dots help the technicians line you up so the radiation machine radiates the correct and precise part of your body that needs it. They are hardly noticeable, they look like freckles. Only I notice them because I know what they are. I have since thought about connecting the dots into some totally cool tattoo, but haven’t gotten there yet!

My second round of radiation was targeted on my neck and back, trying to hit the First Thoracic Vertebra. I went in for my mapping, with the same guy who did my mapping just less than 2 years before. The good news was they weren’t going to tattoo me this time. The bad news was I had to have a “mask” made to keep me immobilized during my daily sessions. The mask starts out as a flat piece pf plastic with some diamond shaped holes in it. As the technician told me, they would wet the flat mask, which would make it malleable, and then pull it like taffy over my head and shoulders. Then they would clamp it to the table. It had to fit very snug and I had to lie still for a while as the mask hardened. I really had to focus my mind and imagine I was having some wonderful spa treatment. Some amazing, unusual, expensive, “only-at-the-best-European-spas” spa treatment. It was a struggle. I tried not to think of my nose itching and then it would itch. I tried not to think about coughing and then I would feel the overwhelming urge to cough. I tried to regulate my breathing as if I was the best trained yogi in the world and then it would feel like I couldn’t breathe at all. And then finally it was done and they were removing the mask.

The next day I started my radiation treatments and had to get clamped down to the table under my mask. These sessions didn’t last nearly as long as when the mask was made, but still it was uncomfortable. It felt a bit like some ancient torture device and that I was being clamped on to some sacrificial table. It was a constant reminder that I wasn’t at the tanning salon, I was getting radiation for metastatic breast cancer. I had to get radiation 5 days a week for 5 weeks. Somewhere in the middle I showed the picture of the mask to my therapist. She looked and thought and then said something that totally changed the way I looked at my mask. She suggested I think of “her” (the mask) as protecting me during my treatments and that I name her. I let this sink in for a while and even though I didn’t name her right away I did imagine that the mask was a woman and she was made up of all the strong women I knew in my life; My Mom, my daughter, Grandmothers, Mother-in Law, friends who had been through cancer, friends who had supported me, friends who had been through their own struggles, my sisters-in-law, my therapist, all the women sitting in the radiation waiting room, the women I had met in chemo, doctors, nurses. So many women that suddenly were all wrapping themselves around me and protecting me, lending me their strength, their love. Suddenly the mask was okay, my new friend, my fellow cancer warrior.

The next time I showed the picture of my mask to my therapist she noticed on the sheet next to the mask was the word “Angelica”. Now this must have been the name of the company that supplied the sheets to Dana Farber, but it seemed prophetic to me. It all made sense; this was the perfect name for my new friend. Angelica had managed to get me through 5 weeks of radiation and out to the other side. She was way more than an immobilization mask, she was my Radiation Guardian Angel.

Better Living through Chemistry?

2009-05-17T09:55:00.000-07:00

I am a person who does not like to take medicine. To me a couple Motrin is the cure for everything and as powerful as I get when it comes to taking drugs. But having cancer has changed all that. Of course there is the required medicine in the form of chemotherapy. Chemo was a necessary evil in my mind, scared the shit out of me but I knew I had to do it, what other option was there?

But chemo was just the tip of the medicine iceberg. Let’s start with the mastectomy. Of course there is the anesthesia, absolutely necessary, no argument there! But it left me slightly stoned and I would startle awake every couple hours throughout the night. I found out that Tylenol with Codeine does the same thing to me so I stopped taking that. I was given Oxycodon as a pain reliever after surgery, which I used only once or twice because I was still a wimp about medications, the stronger the scarier as far as I was concerned.

Then there was chemo, and all the medications that came with it. First they put a whole bunch of stuff through my IV like anti-nausea meds and steroids and who knows what else. After a treatment I would have so much stuff coursing through my veins I felt like I was plugged into and electrical socket, my whole body would be buzzing. On the day after chemo I would get a shot to boost my white blood cell production so I would be ready for chemo again in 2 weeks. The side effect of this “booster” shot was that for 24 hours a hand on my shoulder felt like someone was punching me and just laying in bed was painful. Sometimes I would also get a shot for anemia. This shot was relatively side effect free except that my urine smelled like I had eaten a casserole full of asparagus. Now with all these meds in my body other things started to happen that required more medicine. Sometimes I couldn’t go to the bathroom so they gave me stuff to make me go. Other times I was going to the bathroom all the time so they gave me stuff to make me stop.

They offered me other meds, like to sleep or to deal with anxiety but I said no thanks, still in that anti-chemistry phase. Then I had my recurrence, and I went through a tough biopsy (see Biopsies-R-Us) and was told I needed another biopsy. My anti-chemistry phase was instantly over. Bring on the drugs!! I asked for sleeping meds and anti-anxiety drugs and began taking them immediately.

The recurrence in my first thoracic vertebra led to a new round of medications. First some shots of Lupron to put me into menopause. Then a daily pill to help keep the estrogen in check. Also an IV drug called Zometa to help strengthen and protect my bones from further metastases. But it was the radiation that led to the bursting of my medicine cabinet doors. I had to write a schedule for all the medication I needed to take and when to take it. The location of the radiation led to a really, really, really bad sore throat. So I took Motrin 4 times a day religiously.I took an antacid every morning. I had 2 liquid medications. One to numb my throat before I ate that I took at least 3 times a day. Another to heal the wounds to my throat; which I would swish and swallow 3-4 times a day, after which I could not eat or drink for 1 hour. And then I developed Thrush which required another liquid medicine that I had to swish, gargle and drink 4 times a day, and if possible not eat or drink for a little while after.

This medication routine lasted for a month, so by the end of it I felt like there had never been an anti-medicine phase in my life. But I made it through. I was uncertain at times but I made it and without the medicine I wouldn’t have. I know many people who believe in and practice better living through chemistry. While I will never be a heavy drug user and get a chance to appear on Dr Drew’s Celebrity Rehab, I have developed a new appreciation for the fine art of medicating oneself when needed. Don’t fight it; sometimes we all need a little help to make it through, and sometimes chemistry is the best medicine.

Biopsies-R-Us

2009-05-10T14:04:00.000-07:00

So my oncologist tells me I have to get a CAT Scan guided needle biopsy for the recurrence found in my First Thoracic Vertebra, just to be sure it is breast cancer that has metastasized rather than some new, different cancer. I say okay, sign me up. I want to get started on getting rid of this new intruder as soon as possible and this will help. It will tell us how to fight.

So my sister-in-law takes me to the place for the procedure. We now call this place Biopsies-R-Us located in what we jokingly call the “strip mall” in Salem. Looking back on it I can sort of laugh, I have to, what else can I do. But when it all happened it was not a laughing matter.

The place seemed alright. Clean, professional, well lit, other people in the waiting room. Things seemed okay. Then we got called into the next waiting room. This was even better. Private, comfortable, good furniture, nice mood music. We were attended to by a nice technician who told me I would NOT need and injection for the Cat Scan, this was looking great so far. I answered some questions and then put on a Johnny and went in for the Cat Scan. This was an informational scan. Now usually I am freezing in these exam rooms but it was toasty warm in there, which at the time I didn’t mind, even liked it, even though I had on my sweat pants and UGGS under the johnny. They did the scan and then something that has never happened to me before happened, the doctor brought me in to the other side of the scan room where all the computers were and showed me my scan. He showed me where the suspected cancer was in the vertebra and how it differed from the “normal” vertebrae. He also showed me scar tissue on my left lung from previous radiation for breast cancer. At this point I started to have a funny feeling. It was just a little, tiny funny feeling somewhere in the back of my head.

Then the Doctor told me they could do this but it was going to be a little difficult because of the location. So now the little funny feeling is getting a little bigger. Then I have to lie face down on the scan table with my head to one side and my arms pinned under my body and legs (because the table is so thin). I lay in this uncomfortable position for at least one hour as they proceed to stick a needle into my back and work it down to my vertebra and through the bone, taking scans every few minutes to be sure they are on target. Now that little funny feeling is screaming and pounding in my head. And the once “cozy” warmth of the room begins to get uncomfortable. And the occasional pain from the needle that makes me jump and the Novocain that feels like it is squirting through my neck are starting to worry me. And they keep telling me what a good job I am doing and the more they say it the more I want to tell them where they can stick their needle. And they keep saying just a couple more minutes and then just a couple more minutes and it feels like hours. And then finally it is done and I can’t tell you how relieved I am. So happy I want to jump up and run out of there.

So I try to move my head and neck, which is a little painful from being in an uncomfortable position for who knows how long. And then I sit up on the scan table and try to get my bearings. And I don’t know if I should take more time or not but I want to get out so I stand up and am heading out of the room. Then for the second time something strange happens. The doctor invites me back in the other room to see the procedure on the computer. And I see the needle in my back and going into the bone and all of a sudden I don’t feel so good. I feel like I’m going to faint and throw up at the same time. And all these men standing around me like I’m the guest at some bizarre party where they are all excited because they just tried something they’ve never done before, pick me up as I pass out and carry me back to the scan room. Then instantly I have my feet up, a cold pack on my head, a cold towel on my neck and oxygen in my nose. Next they bring me water and juice and a nurse from up front. They stabilize me and bring me to a “recovery” room and bring my sister-in-law in to see me. I eat a snack because you can’t eat before this procedure and they were late getting to me so who knows how long it has been since I have eaten.

I start to feel better and I joke that the oxygen bar in Las Vegas was way more fun than the oxygen at biopsies-r-us. And the junior doc, who did the entire procedure while the senior doc watched, says “Oh, I just got back from Vegas yesterday!” And I look at my sister-in-law with wide eyes. That was the last thing I wanted to hear said by someone who just stuck a needle through my back towards my neck and into one of my vertebrae! Now I really want to go home and that is what I do.

Luckily I was not hurt during this procedure. It was traumatizing and I think I was in shock for about 24 hours after, but I was okay, and it was done. Until my oncologist called and said they didn’t get anything and they had to do it over…..@#*%&$#@*!!

Of course I never went back there. I went to Brigham and Women’s where the only similarity between the two biopsies was that they both involved a cat scan and a needle.

So for future reference, when needing any procedure involving needles and cat scans, do not go to the drive through joint at the strip mall, head straight to your nearest world class hospital and don’t stop until you get there.

Mastectomy Bras

2009-05-03T07:35:00.000-07:00

Mastectomy bras, or the “Granny Bra” as we refer to it around the house, matches well with granny panties and my skin tone, besides that there isn’t much else good about them. Of course they are great for all of us women who are missing a boob and need a bra to hold a gel or foam shape similar to a boob to make it look as if we still have both our boobs as originally intended by God and Mother Nature. They make it so easy for me to pretend I have both my breasts that I fool everyone around me (well not everyone but lots of people). Even people who know I had breast cancer aren’t really sure if I have 2 boobs or not. So I guess the bra (and the prosthesis) is doing its job.

But couldn’t it do its job in a more stylish, hip, modern, fun and low profile way?? I’m not particularly any of those things, except maybe low-profile, but I still want my bra to be. I am 43 and I like to wear VS panties and my new mastectomy bras most certainly DO NOT go with those undies. I am not ready to switch to granny panties yet, in fact up until a few years ago I wore the VS type of granny panty and my husband convinced me there were other options, like bikinis, thongs, boy shorts, etc.. I told him where he could put his thongs, exactly where they go on us ladies. But the bikini and boy short underwear were a good idea, and so I switched over in an attempt to be fashionable, hip, modern and perhaps even a little bit sexy. Now I don’t want to switch back! I need all the help I can being sexy or any of those other things and at least I can walk around with the knowledge that my undergarments are cool even if nothing else about me is, and even if no one other than me, my husband, my daughter, and the dog get to see this “side” of me.

But I digress. Let me explain a bit about the problem with mastectomy bras as I see it. First, they are all boring in color (and when I say all I mean at least 95% of them). They are mostly beige, black or white with the occasional pink or maroon thrown in. Have you seen VS and other bras, they come in amazing colors, patterns, etc. I am a small one breast woman. In fact the breast I have left (which is my right breast) was the smaller of the 2. I would say I am an A ½ (not quite a B). And if you saw the mastectomy bra I wear, it looks like something one of my size DD friends would wear! Very wide PADDED straps over the shoulders, wide sides that go under your underarms, at least a 3 clasp if not 4 or 5, and cups that look way bigger than an A. Now why is this so?? I just don’t understand. I know there needs to be enough coverage to make you look “even” when you have one real breast and one fake one (and by fake here I mean prosthesis, not a rebuilt breast). And enough support to hold up the fake one, but really my little gel triangle is very light weight. So why??

Luckily my Mom is very handy with needle, thread and sewing machine. And I found these bra inserts on the American Cancer Society’s website. These inserts are fabric shapes that can be sewn into your own bras, swimsuits and maybe a camisole or nightie even. So I took my VS bras that I like to wear and that are low cut enough that I can wear something somewhat low-cut without my bra showing, and my mom sewed in these inserts. And now I get to wear my regular bra and feel much more like a normal person, even with one breast missing.