A Christmas Carol

Everything was cancelled this weekend, for me anyway. Soccer tournaments (rain); a birthday party (not actually cancelled, I just did not go); basically all of the plans for the weekend that I had as of yesterday afternoon. I have a head cold. nothing with a fever; nothing particularly notable about it, just a head cold. But man, am I sick!

I have been fighting it all week, taking plenty of vitamins, sleeping as much as possible, the usual. And I thought I was getting better, until about 10:00 on Friday morning. When suddenly, I realized that I should be no where near my office.

However, instead of coming home and going to sleep, I began addressing our Christmas cards. Instead of adhering to our couch, I made myself busy with Christmas-type things. Around 4:00, I succumbed to my sickness. As my body relaxed, the cold hit in full force and it sucks.

Sitting here today, though, I am appreciating all that is holiday. I am enjoying our tree. I am proud that we actually mailed our Christmas cards today, hoping people like the poem that I drafted as a meager way to offer our thanks for all of the support we received this year from our friends and family. We talked about how Santa stops time. We watched a movie and a couple of Christmas cartoons. I made my girl hot chocolate and enjoyed some coffee. I drank Gatorade. Lots and lots of Gatorade.

The best part is...this year, I do not have cancer. Last year, I seem to recall that we did all the same things. However, I also recall an underlying code of stress and anxiety unmatched by anything we had known before. Exhaustion at every step. A tear around every corner. But we did it. Life went on. That was the most important gift of last Christmas season. Life went on and Christmas came. Family came. Santa came down the chimney. He traveled through the night spreading Christmas cheer that cancer could not abolish. LIFE WENT ON.

Perhaps, I am forgetting the nausea or my gray skin tone or the implicit fog that plagued my brain on Christmas day.....but looking back, none of that seems important. I am proud that we got it done for our kids.

Looking back at pictures, I am sentimental. And I think about many Christmas seasons from now when chemo will be a distant memory, when I am completely reconstructed and I think about that special Christmas as a blessing. A blessing that taught me to appreciate all Christmas's past and future. My own Christmas Carol and the ghost that was our escort was my own.

How many people get a second chance like that?

So, I am going to sit on my couch and continue to enjoy our tree. I am hoping desperately that my cold goes away very soon because Christmas is coming. Good thing that most my shopping is done.

How Are You?

Home sick for the past couple of days I got to thinking that I have missed some obvious opportunities to compose entries for my blog. I cannot even tell you that I remember what they are, because my memory is not my strong suit these days. However, as I put together my family photo collage that I am hoping to use for our Christmas card this year, I started to think about my supporters, confidants and friends, and my intermittent lack of connection through my blog entries.

So, how are you? This is what really crossed my mind. Lovely people have posted comments to this blog. Some of them that I know and some that I do not. Like the friend you never knew that you had, I came to rely on these comments to help boost my confidence and on those days when I felt a little lonely or lost. They reminded me to stay positive. Even though my writing portrayed my positive outlook, I did not and still do not always feel that way. Comments on my blog were the reassurance I needed to help me through difficult moments.

So, I guess what I am trying to say is THANK YOU!

As far as what is going on with me physically, this weekend I have been sick. A winter cold. I fell ice skating a couple of weeks back and bruised my tailbone, too. I am still nursing that injury. My left breast is ready for reconstructive surgery. Though, surgery has been postponed until March for personal reasons. It is hard as a rock though, full of saline and ready for implant. My husband and I laugh about how it just sort of sits there, not moving or wiggling. (Sorry, if that is too much information!)

I also have discovered lately that I am physically very weak. Combined with the fact that my balance is a bit off, I am being more careful than ever. I recently joined the YMCA and am planning to start rectify this, while my daughter attends gymnastics at the same facility. I think yoga might be good for me as well, so I am working on finding time and a class for that.

My Christmas shopping is nearly complete and I am more organized than I have ever been in this respect. Maybe it is just because I am appreciating the holidays a little more? Not that I never did appreciate them, I am just sayin'.....

My kids are participating in their Christmas programs at their elementary school this week and last. I remember being at those performances this time last year, waiting for my hair to fall out from chemo, wondering if the next person who shuffled behind me to find their seat and bumped the back of my head would make it so. I remember it so clearly. It is so nice to have hair again. And a lot of it.

Anyway, I am truly having a joyful Holiday season. Who better to share it with than you all? Thank you for always being there for me this year. Thank you for reading my blog. I am truly honored.

RIP Elizabeth Edwards

I do not follow the news as I should. I rarely follow politics. Only enough to keep up in conversations and about issues that are important to me around voting time.

So, when following the John Edwards presidential campaign in 2008, I have to admit I did not know a lot about the guy. I thought he was fairly handsome. I thought it was remarkable that he had young children. I vaguely remember hearing of Elizabeth Edward's breast cancer diagnosis. I also vaguely remember her cancer fight seeming minimally affective on her husband's political aspirations. I do not know that I had an opinion one way or another. My memory does not work like that. People's ailments were not something I understood or thought much about until I got sick, selfish as that probably sounds.

Yet, recent news of Ms. Edward's decision to stop treatment followed immediately by her death has affected me greatly. I have read several blog posts. I have heard the news. I have searched for her diagnosis to see if it matches mine. I have searched for the timeline of her treatments. I know the obvious - just because Elizabeth Edwards suffered a cancer re-occurrence does not mean that I will. I hope not.

I just think to myself, "Self, you are so lucky."

Then I think some more. I think of the tears her family must have cried through out their journey - because it was their journey. I think of the fear that must have plagued them for all of the little and big symptoms and side effects that they endured together. I wonder how much her children knew and when they knew it. I think all of these terrible thoughts. I am raw with them, as if they were mine. And I cry for the moments that cancer stole from this family and for the pain it inflicted.

I hope these children find beauty in their mother's fight. I hope they feel her strength encircling them. Her outstretched arms never further away than a warm summer breeze or the quiet reflection of the rain. I bet they do. I bet they find that and so much more. They deserve so much more.

I am inspired by Elizabeth Edwards. Not just by her sensationalized fight against the ravage beast that took her body, but by her spirit. A mother with young children. A fighter, an activist, an intellect and an expert Lego construction helper to her children. I am sad for her family. I am afraid for mine to.

The cancer is something I cannot control. Should it be lying in wait for me, I will go on. Thank you Ms. Edwards. Thank your for leaving your legacy of strength behind. Thank you for reminding me just how fragile we are....and that sometimes, no matter how hard we fight, we do not win. I am awake now. I am a survivor. I plan to keep it that way.

3-Day in San Diego

I wrote the poem below after returning home from watching the finish of the Susan G. Komen 3-Day Walk in San Diego. For those of you that are not local, it rained all weekend. My daughter and I went down to hand out treats for a couple of hours that Saturday morning. All four of us went to the finish on Sunday. What a moving experience! I am so grateful for those who walk year after year and so proud of those who braved the rain this year. What a sisterhood I have joined through being a survivor! I am inspired.....and so, I write.

Rain pouring down,
Feet never stop.
Except to nurse a blister.
A single step, a hop.

Pink all around,
Smiles unaware,
Of scars they are healing,
With passion and flair.

Hope is the wish,
3-days, 60-miles,
They keep going,
Steps constant, single file.

In memory signs,
Posted along the way,
Angels floating,
By will or skyway.

Sisters in hand,
Husbands, sons too,
Bras on the outside,
Tears there too.

Legs soar,
Eyes bright,
Friends wishing,
Encouraging the fight.

Thanksgiving to follow,
This glorious quest,
Blessings abound,
Maybe a seat empty, lest.

We bow heads,
As we say grace,
We remember the rain,
What sisters have faced.

Thankful, I am.
For all listed above.
For every step taken.
Every step full of love.

Anniversary

I love salami sandwiches. To satisfy my craving, I made one this afternoon, even including mozzarella cheese, an additive I usually avoid to save fat grams. The sandwich was made even more delectable when I toasted my favorite wheat bread. Satisfied with my creation, I took the sandwich outside in order to enjoy to sunshine and admire the passing golfers.

Relaxed and content, I glanced to my left and spied my grandma’s, DeeDee’s rose bush. For those who do not know, we purchased my grandma’s house from my parents about 10 years ago and there are certain aspects of the house that will always be DeeDee’s. One of them is this white rosebush. Today, I noticed that the petals on the roses were extraordinarily white, wherein they are usually more of a cream color, were usually brown around the edges and often had pinkish spots on the petals. It was a bright day, but even as I approached, the lily white color reflected the light in a way that I never remember seeing before. I was puzzled. I never care of the rose bush the way I should. Our gardener only trims it back, year after year.

As I returned to my seat on the patio, I had a fleeting thought that the rose, pure and beautiful, reflected my own self. Pure and beautiful. I thought the dots were like my cancer and the not so beautiful cream color with tattered edges that the roses used to be, represented the way my life was prior to cancer. Very symbolic, in my mind. I had a moment.

I was diagnosed with cancer on November 12, 2009. I celebrated my year anniversary of survivorship on Friday. My husband bought me an exquisite bouquet of pink flowers. We celebrated dinner at the Bali Hai Restaurant, where we splurged by ordering hors d’oeuvres and dessert. We talked. We laughed. We reflected on where we have been and where we are going. I shared with him my inner most thoughts about the person I am today. A survivor.

So, the day after this celebration, as I sat and admired this beautiful rose bush. In my yard. At my house, my children inside doing things that kids do. My husband busying himself with chores. All is right in my world. And the image of DeeDee's beautiful white roses will be forever be burned in my brain as a symbol of my past and my future.

Mirror

The post below was first published on the site where I am a regular contributor, Writing, Writer, Writest. Though inspired through a WWW topic, the piece is deeply personal, so I wanted to share it on Nip It as well. Enjoy.

I have mixed feelings about the mirror. Sometimes it glares at me stonily. Sometimes it boosts my confidence. Sometimes it is indifferent, as if I am just one of its many minions for which it does not have time to pass judgment. Always, though, the mirror reveals the ravaged scars on my chest where breasts once perched. Always, it tells me if my wardrobe choices succeeded in hiding said scars. Always, the mirror shows all, tagging me awake, as if to say, “you’re it!”, as it turns and runs away.

Mirrors have been my enemy this year. They were the impoverished newspaper reporter thirsting for a real story who always settled for the scrupulous scandal where truth was subjective and lies breached even the sweetest memories. When I lost my hair and wore my buttery soft sleeping hat for the first time, I did not recognize the person in the mirror. That person was a cancer patient. I cried. I remember the moment clearly. Months later, a steady gaze in the mirror revealed one remaining eyelash on my lower right eyelid. I became practiced at only employing focused glances to check specific features of my appearance.

However, I love clothes. In fact, I am not ashamed to admit that retail shopping is almost guaranteed to change my mood. Putting together a really great outfit will do the same. You need mirrors for that. Sometimes more than one.

My colleague teases me about my extensive wardrobe. Truth be told, she is right. I have a lot of clothes. However, I work in an industry where appearance is crucial, where shoes are shined and shirts are pressed. I feel justified in always having “the right” thing to wear. It feels good. It helps me walk tall.

I have needed that lately. Clothes fit awkwardly and I consistently misjudge necklines I think will completely hide my scars. That said, dressing usually requires time to try on two or more outfits, my discerning eye for fashion not easily satisfied. For example, a typical flip through my closet reveals an article of clothing that I would like to wear. Sometimes it is a shirt, sometimes just a belt. I then go about deciding if my clothing inspiration covers all it should. As the layering of the outfit progresses, I feel like I am donning a costume, the costume that helps my mind go on, even if my body has temporarily lost its will.

Stuffing my bra is another morning ritual, one I usually complete with haste. Seeking perfection has no place right now. It is an odd thing, really, and it’s further complicated by the fact that I have no nerve endings in my chest wall. As my bra and its contents slip around throughout the day, I don’t receive any sensational warning that something is out of place.

Carefully, I spot check throughout the day, still avoiding the mirror.

I think nearly everyone has a love-hate relationship with mirrors at some point in their life. There is a particularly vindictive ceiling-to-floor mirror residing on the wall with the elevators in the building where I work. It is impossible to avoid, unless you plan on tramping up and down the ten flights of stairs leading to the fifth floor. In the sordid moments spent waiting for the elevator each day, this mirror takes pleasure in reminding me that my clothes do not flatter my shape as I thought they did when I put them on in the morning. I think it also conspires with the overhead lights to accentuate the bags under by eyes, usually making my skin look painfully sallow. I make it a practice to hit the elevator button and then stand five feet back and to the side. It’s a little dance I have learned over the years . . . not letting the mirror have a spot on my dance card.

These days, my bathroom mirror is sometimes kind. I enjoy a sprinkling of good hair days, make-up helps to accentuate eyebrows, and my eyelashes have grown back and don mascara. I think I will always have misgivings with every glance in the mirror; I cannot imagine a woman who does not. But one day soon, I know the scars will not be all that I see.

To a Grapefruit

My expander was filled with 100 more cc's of saline yesterday. Or as Steve put it, "It went from the size of an orange to the size of a grapefruit." As I am writing this, it occurs to me that I do not know quite what to call "it". It is not quite a breast in my mind. It is more like a section of skin that is slowly expanding with every visit to the plastic surgeon.

I will say that it makes me happy to have "something" on my chest big enough that matches the size of my prosthetic, which I have resumed wearing. Wearing my prosthetic means I get to wear my pretty bras from Nordstrom's. I know my women friends understand: pretty bras just make you feel more feminine.

So, to the surgery....This week, Dr. Scott officially filed paperwork for my reconstruction. He estimates up to a six month wait, but at the same time, was fairly confident that I would be able to have surgery in March 2011. This is my goal month: far enough away from summer to where I will be fully recovered  for our family vacation yet after State Cup, when Harrison will end his soccer season. Of note, I am making special dispensation for State Cup, as it involves at least one weekend of travel. Since we have never been, I did not want Steve to be in a position to have to go it alone. (Plus, I heard the parents have just as much fun as the kids do....and I do not want to miss out!)

I chose my implant: gel. Also, known as the "gummy bear" type. We talked about my options for surgery again. I am confident. I have one more fill on my expander to go, unless we decide to over fill. It still does not hurt or cause me any discomfort.

Finally, Dr. Scott and I spoke of my plan to run a half marathon in February. He is 110% behind the idea as he feels that people who have been through what I have been through desire a sense of physical accomplishment. That, and he agrees that my training will help prepare me for surgery, which will be my most painful, trying surgery to date.

I can hardly wait for both. Today, I am nursing the start of what could be shin splints. I used to run on the Cross Country team in high school, so I am familiar. They worry me a bit.....but I hear that a lot of stretching will help to curtail their painful affects. I will keep you posted....grapefruit and all........

Strange Week

This morning, I awoke to words raining through my head like a blizzard. Their subtle impressions coaxed me out of bed early for a Saturday.

"I need coffee," I thought.

The stairs leading to the kitchen seemed like a mountain. My body is tired. It has been a busy week and in reflection, a strange week. The news of my immediate supervisor, Chuck Day's resignation from Rady Children's to pursue a much deserved career opportunity had me wearing my emotions on my sleeve all week. My career working for Rady Children's Hospital spans more than 14 years; I have worked and been mentored by this dear man, truly one of the best in his field, for seven.

Through my cancer journey, Chuck had faith in me, in the job I could do; even when my perfectionist self did not. And I am not necessarily talking about the the last year, when I have worked a sporadic schedule. I am talking about the period of time before my diagnosis when I was clearly not working to my full capacity. I knew it. He knew it. We just both hoped it was short-lived. Little did we know that cancer had hijacked my body and slowed my abilities to a stand still.

In addition, while working for Chuck, my writing skills have soared. In fact, when I first started writing in this blog, I like to say that I was "channeling Chuck." I would think to myself, "If Chuck were to edit this, what would he say?"

"Bigger vocabulary" "That is an awfully long sentence, isn't it?" Will is stronger than would." "Use 'over' correctly"(which basically means I use 'more than' a lot). And so much more. Chuck is a relentless editor.

Getting back to my week, I had an appointment with Dr. Sweet on Monday. The appointment was standard follow-up and he did not tell me anything that I did not already know. I am to watch for anything out of the ordinary and report back to him. I laughed nervously when he said, " I do not exactly what that might be." I will see him again in six months.

I also spend a fabulous evening with the Young Survival Coalition, at the SK Sanctuary Spa in La Jolla. Dr. Stephen and Lynn Krant, the spa owners, donated services of the Sanctuary for the evening. I had a luxurious massage and facial. We listened to a great speaker named Stephanie LaRue. Once again, I was reminded that I need to eat right. I was reminded that cancer is an unpredictable animal that pounces when you least expect it. That lurks in the background waiting for its chance to invade. That chemo does not always work. Sometimes, I come away from gatherings with other cancer survivors feeling scared for my future, or lack there of it. Sometimes, I just feel pretty darn lucky. But always, I enjoy being around these incredible women whose personalities light up a room.

So this week has been strange. The highs and lows that I wrote of here were followed by a sequence of other important activities that I will not document but were taxing just the same. Coming into Saturday, I am OK. I would not have changed a thing about this week, outside of maybe my boss leaving. But then again, he deserves more recognition for his numerous, astounding accolades. I am happy that he found just that.

The Game of Life

I just finished a rockin' game of Life with my kids. The Sponge Bob version to be exact. Harrison assigned himself to Mr. Krabs and Madison was Sponge Bob. I got to be the paperclip. (We are missing some game pieces.) Harrison was the banker. Madison was in charge of the game cards for which she sang every word on the card in perfect pitch during the entire game. We worked our way around the board experiencing job changes, pay days and expense cards. We laughed and we bickered. We even danced a little. Mr. Krabs, the cheapskate by character, won. Kind of fitting, I think. As was playing this game on this night after this week.

Today, I was presented with an opportunity to be a part of a research study on nutrition for cancer survivors. However, only survivors diagnosed with cancer in stages I to IIIa qualify to participate. I did not think I was a fit, but I called Steve because I wanted to know for sure. For those of you who have read my past blog entries, you may remember that I never wanted to know my stage. Thus, I don't. I knew it was bad. I knew I had to fight a monster regardless of heavy weight ranking.

Steve knew definitively. "You were stage 3c or 4a, " he said. "The doctors said that it was stage four because it was inoperable but was downgraded to 3c when the chemotherapy worked."

Oh.

"I really defeated a beast, didn't I?" I said.

"Yes, you did, honey. I am proud of you."

I was fighting for my life, after all. This past year, when people used that expression in regard to me, I always thought they were being over dramatic. Hmmm...maybe I was wrong.

Yesterday, I had a doctor's appointment where they filled my expander. The expander now harbors 200/350 cc's of saline, which is gradually being added in order to prepare my skin and muscle to hold the implant. While I waited in the quiet procedure room, I had a moment to reflect on my strategy for living my best life in the short term. I have been in such a rush to complete my journey that I had not thought in depth about the repercussions of having my last surgery immediately after Thanksgiving. I know how strong I am and how much I can handle physically. However, what I had not considered is what I can handle mentally. During this brief sanctuary of quiet reflection, I concluded that I do not want another Christmas season like the one I had last year.

I have a vivid memory of last year's Holiday Sing at the elementary school. Sadly, I do not remember anything about my child's performance. What I do remember is that my hair was falling out in clumps from the chemotherapy. I remember telling myself that my hair falling out was a good sign in that it meant that the chemo was working. However, inside, my heart was breaking. That night, I had clipped my hair up in a style aimed to hide my growing bald spots. I was sitting in the front row of the auditorium and people were filing in to sit in the row behind me. The rows were narrow and some parents inadvertently bumped my head as they squeezed by. I remember thinking that if one more person bumped my head that all of my hair was going to fall to the ground. I was astonished that it did not. That bitter memory is burned in my brain. I want to replace it with new ones.

This year, I want to go to ALL of the holiday parties. Go to my kids' school performances. Go to the December and January soccer tournaments. Bake cookies. Wrap presents. The kids are getting so big, so fast. At ages seven and 10, it will not be too much longer before Christmas loses its bright-eyed wonderment - which to witness is truly one of the best rewards of being a parent. I do not want to miss another moment.

So, playing the game of Life tonight with my kids tied my week's experiences up in a bow, like a gift. A sweet reminder of what could have been or not have been as the case may be. How lucky I am. How blessed I am to have countless more chances to sit around the coffee table in my living room and play a board game. I'll take being that paperclip and any Life expense cards you can throw at me. Mr. Krabs, I want a re-match!

Radiant

"Marsi, you look radiant. I am so happy to see you!", exclaimed my colleague as she offered an affectionate hug upon my arrival at her office.

"Happy to be seen," I said, my standard reply.

This is how my conversation started, yesterday afternoon. This is how many conversations start that I have had since I went back to work. In this instance, my colleague is truly one of the most genuine people I know. Smart too. She has a heart of gold and the success that goes along with a smart person who is generous with her time and gentle in her manner. She is a grant officer for a large foundation. We have spent many lunches together, dining over discussion of children, soccer, vacations and our work.

As usual, we had a wonderful lunch together. We laughed. We talked about her the family cruise she had recently taken. We talked about business. After spending the lunch hour with one of my favorite people, I ventured back to my office satisfied. However, as my thoughts became solely mine and I started to strategize how to attack the work on my desk, my mind wandered through what had been our conversation of the afternoon. I thought to myself, what about me is so radiant? How is it that everyone keeps telling me how good I look? What am I missing?

Looking in the mirror myself, I see the same Marsi that I have seen for the past 39 years. My hair is shorter and curlier than ever before, but for the most part, it is the same Marsi. More than that, I have gained weight. Not anything to worry too much about. Just enough that the smaller clothes that were fitting me last month, are not fitting so well right now. It is almost as if the weight I lost on the top went right to my hips. It hardly seems fair, but then again, what about this disease is fair? Of course, the disease has nothing to do with it. The dark chocolate covered acai berries with blueberry from Costco, had everything to do with it though!!

Not to give anyone the wrong idea here. I am not fishing for compliments nor do I have low self-esteem. When someone tells me how "good" I look or that I am "radiant", I just sometimes feel like saying,  "As opposed to like death warmed over?" I realize that people do not know what exactly to say sometimes and are just trying to be nice. However, like in the case of my colleague, that is not her style. Genuine to the bone, I know she would not tell me how good I look, if she did not think so. So, then what is it?

Like everything else in my life, I tend not to dwell on things too much. Maybe she just liked my shade of lipstick. Either way, I will take it. And if you want to call me radiant too, well then thank you. Goodness knows, all the support in the world has been thrown my way over the course of the last year. And this is just one more show of it and for that, I remain grateful.....and radiant.

When it isn't Cancer - by Ann Gregory

The blog entry below was written by Ann Gregory, a fellow cancer survivor, for her blog, Ann's Fight. I was  touched by her by her words, particularly the last four paragraphs. However, to put them in context, I copied the entire entry. She is a very inspiring woman, a fighter with a positive spirit. Go, Ann! Go!

Upon first being diagnosed with cancer, my world simply stopped for the barest second and I could feel something shift and click in my mind. Every-day Ann traded places with a woman that I'd never relied on and that part of me that is a survivor emerged. My vision in that moment was so intently trained on my doctor's discomfort at delivering a cancer diagnosis to a perfect stranger only a few years younger than himself. I could hear those traitorous cloned white-blood cells rushing past my ears as my heart exploded with every beat. I had cancer.

I don't have cancer anymore. Haven't since achieving second remission in July 2008. Now I must live my life in that moment after cancer. Knowing that the genetic defect that lead to the first cloned white-blood cell may lurk deep within my bones is cold comfort.

I don't have cancer. I am living with the aftermath of treatment. My new immune system still doesn't like the decor of its new vessel and has decided to do a little redecorating. It's been working on my eyes and skin for some time now. Lucky for me, the drugs I've been using to keep Ann 3.0 under control worked up until a few weeks ago. The immune system has decided that my lungs, liver, eyes, skin, mouth, and fascia have got to go. The only way it can do this is to kill them as it would an infection. It hasn't quite keyed into the fact that we're all one and the same.

My breathing became tricky and my lung capacity reduced to 59%. Walking to class felt like running a mile. My liver became swollen and my abdomen became uncomfortable. All of the other nuisances magnified ten fold.

I have missed a lot of school for medical reasons. I had to see THE SPECIALISTS and have a liver and lung biopsy. Post transplant, when you have to see a specialist, you're going to see a doctor who deals with things they don't usually go over in medical school. I had three weighing in along with my transplant specialist. They all cautiously agreed that I had GvHD.

I'm now taking 64mg of methylprednisolone in addition to tacrolimus to try and pull the immune system back into line. My immune system is back in the toilet. I must now take three antibiotics, and antiviral, and an IV anti-fungal.

I was surprised with the news that a new PICC line would be inserted into my arm on Wednesday in order to be able to facilitate infusions. I had a little break-down after it was inserted. It all had to do with being frustrated. Frustrated that I have a tube sewn into my arm; frustrated that the IV nurse who did the procedure wouldn't write orders for dressing kits or heparin unless Chris took the training class to get re-certified. Chris has given me infusions and changed my dressings from the beginning. He's taken the class three times. He wasn't with me because I was just supposed to be having a check-up. There'd been no mention of a catheter insertion. It all coalesced to overwhelm me and I ended up crying in front of my transplant nurse. I don't cry in front of my doctors and nurses. I do cry when I get mad or frustrated. I hate the fact.

My nurse was great as was a former nurse who tracked me down to give me a hug. Chris and I returned to MD Anderson yesterday so he could take the class yet a fourth time. He wasn't able to challenge for a demonstration since the clinic was so short staffed. A local company is delivering heparin and dressing changes, so we should be covered. Chris can do this in his sleep. I can walk you through it step by step, as well. The only reason I can't do it for myself is that the line is in my upper right arm and I am right handed.

It's been a very emotional two weeks. My transplant doctor encouraged me to withdraw from school. The steroids wreak havoc on my body and with my moods and academic ability. I have reached a compromise. I dropped down to two classes. The two professors teaching know exactly what's going on and have shown me a lot of kindness as far as assignments and exams go.
I'm disappointed.

I also continue to learn the lessons that come when it's not cancer.

Just because someone you know has been treated for cancer, it doesn't mean that it's ever over. They are struggling with the life that comes after treatment; as a result of treatment. Don't think your friend/acquaintance is finished and has hit the ground running. Above all else, don't tell them that you had no idea that chemotherapy wouldn't be the end of it.

I have heard all of these things. Most of you have as well. I resist the urge to unleash on the most clueless of my acquaintances who continue to tell me that they had no idea regardless of the number of times I tell them that I'm in this for the rest of my life.

Life doesn't stop, it only takes a different fork in the road. The quality of my life is good. This latest set back will only be a nuisance for me, because I refuse to let it become something more. I will finish out this semester. I will take two classes next semester. I will continue to be available to anyone who wants to talk about cancer and the treatment process. I will hold hands and give out hugs and offer comfort. Because I can.

Hats Day Out

I wrote the following for another blog where I contribute, Writing, Writer, Writest. Enjoy.

Hats. I own a plethora of hats in all shapes and sizes, in all colors and fabrics. Hats that keep my head warm; hats that help me hide from the sun; hats that I sleep in at night; even a striking, red pompadour that I wear when I want to sport a little attitude. One of my very favorites is a modified baseball-style hat in a black and white houndstooth fabric with an embroidered and “bedazzled” breast cancer symbol across the front of the hat and the brim. It was given to me by two of my very favorite girlfriends who found it in a boutique while shopping. The hat feels more like a stylish accessory rather than something worn to cover my mostly bald head.
So, it was no surprise that when my mom took me to Wal-Mart to shop, I wore this hat. I remember the day clearly. It was sunny outside. I had completed a chemotherapy treatment the week before and I was just then feeling well enough to venture out of my house. We wandered through the store, selecting our wares and checking things off my list. We had just made it back to the front of the store and were preparing to check out. It was then that a woman approached.

The woman was small in stature. I remember thinking that she looked like she had just rolled out of bed, though her clothes seemed clean. She had short hair and was middle aged. As she approached, she reminded me of a puppy, looking for some attention, drawn to me like a magnet by the breast cancer symbol on my hat.

She told her breast cancer story in what seemed like five seconds. I was not feeling well and did not want to encourage her, but I was polite. Her conversation was going well, me not saying more than two words, until she took off my hat, unprompted and said, “How long have you been in chemo?”

I was completely bald at that point of my treatment. I was only showing my head at short intervals that usually revolved around some sort of hot flash (another story all together) or shower time. Not only that, but I hated the breeze on my head. It freaked me out a little. Not that I declined to show my head when asked by friends or other appropriate times. I just preferred to do so in a private setting. Not in the middle of Wal-Mart. And certainly not for a stranger.

In her defense, there is a true sisterhood among breast cancer patients. We share stories, we share advice, we share meals and sometimes even share wigs, clothes and bras. In addition, there is something that you lose when you are expected to talk about your breasts all of the time: modesty. Topics that were once viewed as “TMI” are suddenly acceptable dinner conversation. These two phenomenons were an obvious influence in this woman’s need to see my bald head.

Still, as the woman gregariously exposed my head to the fluorescent light of Wal-Mart, I was feeling none of those things. Shock gave way to immediate thoughts of anger and resentment. My hat was my safety net. My hat and this one in particular, is what reminded me that I was still a hip, cool chick. Someone peering underneath it, gave away my disguise and took away a piece of my armor that helped me to keep smiling even when all that I knew to be beautiful about myself was slowly being taken away.

However, I felt the need to appease this woman. Rude as her actions were, I could tell she was lonely. I could tell that the bond of her breast cancer sisters might be her only support system. I thought, “Karma”. Through out my struggle with breast cancer, my golden rule was that my direct and indirect actions played a role in my healing process. I felt that displaying my distaste for this woman’s actions would hurt her feelings, and more specifically, my choosing to not hurt her feelings created positive energy that would ultimately come back to me in some other form.

So, when she removed my hat, I just smiled and answered, “I have been in chemo for four months.” I closed the conversation as quickly as I could and sought the comfort of home. Done and done. Her feelings were spared. I shed a tear and got over mine. She left feeling good about herself. She probably even thought she helped me in some way.
Currently, I am a patient with a “history of breast cancer” and almost a full head of hair. The cancer is gone; the hats are not. They sit in my closet waiting for the day that I will pass them on to another breast cancer survivor. I know that day is coming, but in the interim, in a strange way, I am comforted just to know that they are waiting for me, should I need an extra piece of armor for whatever reason.

Size A, Revisited

At the time of my surgery, my doctor inserted an expander filled with 50 cc's of saline. This week at my post op appointment, Cindy Carson, PA added more. It was a fascinating process. The expander valve is located towards the bottom center of the expander. Cindy used a magnet to find the valve and inserted a small needle. Before she inserted more saline, she pulled blue fluid out of the expander to test that the needle was in the right place. After seeing the blue fluid, she added more saline.

First, I would like to say how much I like Cindy Carson. She is definitely straight forward. But, she also has a kind gentleness about her that I really appreciate.

Second, the procedure did not hurt as much as I thought it might. Similar to my right side, I have very few active nerve endings in the breast area. Cindy recommended that I take Motrin when I got home for the muscle tenderness that could result from the expander's increased size. My muscles were a little more tender for about the first hour. Still, from what others have told me based on their experiences, I expected a lot worse. Maybe so, as the expander increases in size, I guess. For now, even though I still have the residual pain from surgery, I am encouraged that the muscle pain resulting from the expander process will be manageable. I hope this means that we will be able to fill the expander faster.

With the addition of the saline, clothed, I look like I have a breast on my left side. Unclothed, it reminds me of the shape and size of a knee cap, with a nasty scar from being split open across the top. A war wound.

Emotionally, it has been hard to look in the mirror. The skin has been pulled and pressed over the muscle and the muscle stretched over the expander. The result is skin with distinctive puckers, like a tufted chair cushion. I also feel the muscle flex a lot more readily. I assume this is because the muscle is much closer to the surface.

With this recent expander fill, I can see that the tufting is starting to subside. Cindy tells me that if I end up with divots in my skin that they have ways to fix those, using body fat. She also tells me that it looks the way that it is supposed to look, even describing my skin as looking good. I trust her.

Regardless of how it looks behind the curtain, not many women get to revisit their youth in this respect. (I think I was size A in junior high school.) The weight on my chest is much different from the weight of my chest with breasts. And even more different than the weight I carried mentally when my chest was riddled with cancer. I prefer this weight. Size A, revisited.

Shower

The following entry describes my first shower after my second mastectomy. So, if this is too much information, you may want to stop reading here. I was recently inspired by my friend, Meg, who shared something deeply personal in the form of a poem. Since I loved to write poetry in my younger years, I thought I would “go back to my roots” for this one.


Nearly Perfect,
Shower after 12 days of not.
The water hitting my skin,
So steamy and hot.

Undressing carefully,
Recognizing my scar.
Air hitting virgin skin,
Only partially marred.

Breast gone.
Matches right side.
Bravery, not so.
Cancer abide.

Stepping into the water,
Refreshing and scary.
Would it hurt, not sure,
Excusingly sparing.

Routinely lathering,
Not reaching, needing care.
Tender touch to rescue,
Holding hand, tears fair.

Not bothered by scar,
Emotions abound.
Needing that hand,
And the kiss that I found.

Hot water renewing,
Strength coming back.
Cancer is gone,
So different, the track.

Learning so much,
Unrecognizably so.
Needing so much,
OK to let go.

Surgery. Done and done.

I had a mastectomy on my left side and an expander inserted on August 31. Surgery went well. Both pathology reports came back clean! No lymph nodes had to be removed. All good news. I am grateful.

I have felt a range of emotions since this time. Again, grateful for the clean pathology reports; fear when I saw my scar for the first time; disappointment when I could not get my drains out this past Wednesday, as I had planned. The roller coaster was not unexpected. It was my turn to get on it and I have one more ticket to ride for this winter, which will be my last mandatory surgery. Many of my friends have been asking for a timeline, so I will spell it out here.

I am hoping that the drains will come out today. This may be wishful thinking. Regarding next steps, I will know know more specifics after my appointment next week. However, as of right now, it is my understanding that in a couple of weeks, they will start "filling" my expander with saline. As it sits now, the expander is under muscles on my left side. Each saline fill stretches that muscle and skin tissue to hold the implant. They estimate that it will take three months. However, it is all dependent on my pain thresh hold from here.

Once the tissue is expanded enough, through another surgical procedure, they will insert the implant. To avoid having two separate procedures, I will have them reconstruct the right side at the same time. The right side is a completely different process. They will be using my back muscle and skin to construct the breast, as radiated skin cannot be stretched. Supposedly this next surgery will be more painful. As it involves three areas of my body, I can see why. The end result will be two perfect boobs - so mentally, I think I will be in a great place!

As far as timeline, I am eligible for Family Leave Medical Act (FMLA) through my work after November 30. This is pretty much in line with when I would like to have my surgery, anyway. (For those of you who do not know, FMLA is what protects my job.) If I cannot have the surgery in the first week of December, I may postpone the surgery until February. We have an 8-day cruise planned, leaving December 26 and then Harrison has State Cup for soccer (an out of town tournament) mid-January. We are very excited about both!

So, there it is. I have been lucky enough to have loads of support. From dinners to phone calls, cards and flowers and transporting the kids and me places, everyone has just been so wonderful. You cannot know what this means to us. I know I have said this a thousand times, but I will probably say it a thousand times more. You all are the best - thank you!

Surgery Tomorrow

Sorry I have not posted in a while. I have been enjoying my freedom from treatment and need to focus on my breasts (might as well call it what it is). My mom suggested that I write prior to my surgery tomorrow. I was on the fence about writing this entry but also know that this is the best way to keep all informed. So here it goes.

Tomorrow I am having a prophylactic mastectomy on my left side. They are also inserting what is called an expander at the same time that will prepare my chest to house the implant. (At a later surgery, I will receive the implant and they will completely reconstruct my right side.) I have mixed emotions. In the mirror last night, I could not even look at that breast, sitting innocently next to the scar where my cancer resided. I feel guilty for some reason. It occurs to me that maybe it is not as much guilt as it is fear. Now, I know how the left side is going to look, welll sort of. Maybe this is some sort of punishment for being vain. Maybe.

I joke that my left side needs to be removed because my right side tried to kill me, a sentiment borrowed from a fellow blogger. However, I know that it was not really my breasts that tried to killed me; it was a mutated cell that found what it thought to be a nice, nuturing home and grew. And grew. And grew some more. It grew so well, that it had offspring, who found another nuturing home not too far away. It was this cancer that tried to kill me. Not my breasts.

So, how am feeling about my surgery tomorrow? The woman in me is quietly mourning. However, I know that it needs to be done. I do not want to fight this battle again. Removing the left breast helps to ensure that I will never have to. 

Bye, Bye 38!

At last, my birthday weekend is here. I have been awaiting my birthday with dreaded anticipation. I had one heck of a year. So have a lot of my friends. We toasted to the fact that there are better years to come. However, in really thinking about toasting away my 38th year with a "better luck next time" attitude, I thought about what this latter statement infers. The year of my breast cancer journey. I decided that rather than remember the bad, I choose to honor the good. That being said, here is what I have learned and what has inspired me this year:

My kids are strong. My kids have endured seeing their mommy suffer. Their mommy has had a seizure in public. Their mommy has had six rounds of chemo that turned her skin a lovely shade of gray. Their mommy lost her hair and came to their school with no hair and even with tube attached to her body after her mastectomy. Still, they are not embarrassed. They just hug me and remind me every once and a while that they do not want to see my scar. They make me laugh every day. And they have grown so much this year, I am just glad to be a part of it.

I have fantastic friends. I cannot say enough about what my friends mean to me. They all had their part to play. Something they were good at. Something I needed them for. I made new friends and re-discovered old friends too. I learned to lean on my friends. I discovered that my colleagues and Steve's colleagues are truly some of the most special people I know.

I have a wonderful family. My mom and dad are mine and Steve's rocks. Mom was always at chemo with me. Dad was always at the house helping out. I got to see a lot of Darin and Kelly, who visited from Portland whenever possible. Both of them are wonderful sounding boards and also did all of my medical research for me. Steve's family was in constant contact, "checking in". Tom (and Liz) made sure our remodel went smoothly. And I had constant support from, aunts, uncles, cousins and extended family from all over the country, and even from Iraq and Australia.

There are good people in the world. And I am not just talking about nice neighbors. I am talking about new friends who just took a chance to sent me an email. Parents from the kids' school arranging a card tree. I am talking about San Diego United Futbol League arranging dinners for us for months in a row. Another soccer parent arranging meals from her school and Steve's school at the onset of chemo. These dinners were not just any dinners, they were five course meals with special touches, like home-made cookies, cakes and muffins. Cards and notes arrived almost daily from anonymous senders. The neighbors took the kids to school EVERY day. Amazing. All of you.

I am a valuable employee. I know my craft. I know my donors. There is nothing like being out of the office for a while to help you realize how much you like your job and how well you do your job. I have a new found confidence that I hope is going to lead to a great year.

I love to write. Writing in this blog has me hooked.

I know how to be a good friend, now. I know what to say. I know what to do. I want my friends to know that I think of them all of the time.

I love my husband. After this year, I know we can make it through anything. I heard this song today, and it really inspired this blog entry.


I am strong. Enough said.

I want to live. There is no time like the present. Really. No, really, really.

It goes without saying that I did not enjoy all of my 38th year. I DID learn and was reminded of more in this past year than most people learn in a lifetime. I am lucky for that. So, why the dreaded anticipation of my birthday? I am afraid emotion may get the best of me. I do not know that I am ready for that. But, I hope just to keep moving along and deal with it as it comes. Isn't that the only way?

Sisterhood

I was inspired this week. Or maybe I should say I was reminded of the incredible sisterhood that comes with a breast cancer diagnosis. My reminder came from a series happenings that individually were not really a big deal, but collectively, their story tells me how lucky I am.

It all started by the pool at my friend, Laurie's house on Sunday. Just us four girls, floating around in a pool talking about a little and a lot, planning Wendi's birthday celebration (Happy Birthday, Wendi!) and trying out a new hors d'oeurvres that Julann prepared to test for her upcoming Pampered Chef show. It was an awesome afternoon. I needed some time with the girls to help gain my focus for the coming week.

To paint a picture of what my week looked like, on my plate were three grant proposals, two important reports to prominent charities and a number of stewardship projects that were time sensitive. All to be completed on my part time schedule. Because a deadline is a deadline, regardless of my limitations, I snuck in hours of work at odd moments, usually getting my second wind about 10:00 p.m. That was my second problem. My first was that the radiation fatigue had finally taken hold. I fell asleep typing for the first time in my life. Not to say all this to complain. I love making a difference. I am passionate about Rady Children's programs and want them to succeed. It was just unfortunate that radiation fatigue peaked and numerous pending deadlines all occurred in the same week. As I tell my kids though, that's the way the cookie crumbles, sometimes.

By the end of the week, just when I had about had it, the 'sisterhood' kicked into high gear. I received a phone call from my friend Nancy, a breast cancer survivor. While we only communicated through voicemail, just hearing from her made me smile. I also made a new friend through my blog and I am anxious to read hers. I stumbled across another new blog that I really like on the Livestrong website and also rediscovered the Living with Cancer blog, a blog I have been following for a while. I was particularly attracted to the Livestrong Blog Entry, Two and Too because Renee, the author had reconstructive surgery yesterday. Renee had posted quite a few pictures of her cancer journey. The pictures were reminiscent of my own journey and had me wishing that we took a few more. Not that all of the memories were pleasant...I just liked the way Renee presented them.

All in all, in reading, listening and responding to messages and posts discovered this week, I am reminded of the sisterhood that exists among breast cancer survivors. Now that I am through radiation, I want to be more of a part of it. I want to be there to help, lend an ear and/or offer advice. I know I have a lot to give. I also know that I have a long road ahead of me too, as I face two painful surgeries. I am lucky to have my family and friends to support me. And more than that, I know I can lean on the sisterhood, that in a backwards sort of way, I am happy to be a part of. This is the good stuff. This is my reward from suffering through cancer. And it goes without saying that my girlfriends who are not a part of the breast cancer sisterhood are still sisters...they contribute in a different way that is equally as important. Love you all, my friends!

Moving On Up!

So much has happened since I last wrote:

• I completed radiation treatments on July 13;
• My surgery for my left mastectomy and phase one of reconstruction on the left side has been scheduled for August 31; and,
• On July 21, my oncologist, Dr. Sweet, changed my medical record from "oncology patient" to "patient has a HISTORY of cancer".

And this list just represents my treatment and recovery. My family life has been just as exciting:

• Steve's school is back in session. Like last year, his sixth period class is a bit squirrely. He has three blind kids and three kids that suffer from Asperger's syndrome in the same class. He is the most requested teacher, again and is great with troubled students. I am sure that the fire safety demonstration is this week - one of his favorites. Look out science world, Mr. White is in the house!
• We had to buy a new car. Steve's car finely gave up about a week ago. We love his new car though - the Ford Flex. It is so roomy inside and perfect for hauling around the four of us, plus Cooper (our dog) and whomever else would like to join in on the fun.
• My daughter finished golf camp this week. She loves to hit the ball, particularly with her driver. My little half-pint! I guess it is time for me to take up golf, now that both kids have caught the golf bug!
• My son and his best friend, Ian, finished surf camp. Harrison proudly reported that he caught six waves while surfing yesterday; five of which he actually stood up on the board and rode the wave to shore. I will not be taking up surfing, I am afraid. While I love the beach, I am not as sure about my relationship with the ocean and in particular its waves. Madison tells me the same. Maybe both of us will change our minds, in time.
• Harrison played in two soccer tournaments, occurring last weekend and the weekend before that. They won the Albion Cup last weekend, for Boys U11. We were so proud. I have not seen Harrison that excited in a long time. We are really enjoying the team and the parents too. Looking forward to a great season! The next tournaments are August 7,8 and August 14, 15.

My life is full. My cup runneth over. I am one of the lucky ones. I am confident that there is direct correlation between my happiness and my new, official declaration of having a "history of cancer". 

Through a review of Twitter this morning (I just began 'tweeting' last week), I found a great article from Prevention Magazine, 10 Secrets of Happy Women. It is a fantastic reminder of how we should acknowledge special moments that happen every day, find what is best in them and intertwine that happiness, fleeting as though it may seem, into the very fabric of our existence. It is worth it, take it from me! I think this is what got me to this point, and will keep me at this point, for years to come.

Oh, and how am I feeling physically? I am a little tired. Actually, a lot tired. I was feeling fairly faint on Friday and Saturday; and I am guessing it was just from exhaustion. I am resting. My radiation burns are starting to heal. Though, they have been rather painful and itchy this week. However, I have passed the 10-day post radiation treatment mark, so I should feel better and better from this point forward. Yay!

Only two more radiation treatments left.....

Only two more radiation treatments left. As I was thinking about this last night, I was contemplating all that was going on 23 treatments ago. Harrison's baseball championships. School field trips. Work projects. It seems like so long ago. And, I have been back to work for two months now. I can hardly believe it. Five weeks passed with hardly a blink of an eye.

We are a busy family. This past weekend, my brother was visiting from Portland. Also, Harrison's soccer team played in their first of several soccer tournaments. We had a lot of family time, as we tend to have at soccer tournaments and when my brother visits. It was really nice. One thing that has struck me funny over the course of the last week or so, in talking to people at the soccer tournament and such, is the amount of people who have no idea that I am currently undergoing radiation therapy. I guess that is good. Sometimes in my world, it is easy to get wrapped up in the hoopla that has been my family's life for the past nine months. It is usually all about me.

Admittedly, for the last week, I have been too tired to do much else other than sit on the couch, when I am not working or out and about at a family event. I have a bit more energy than I did through chemotherapy treatments, which is good. However, the intense guilt that results from not being able to accomplish what I would like to accomplish is unbearable at times. Still, I try to let others do for the kids, my house, etc. I am just not very good at it. I get frustrated when things are not done in the manner in which I think they should be, or in the time frame that I think they should be. Then, I do them myself. I just hope I am not driving people around me too crazy, ie. my husband. He is a keeper. (And I am probably driving him a lot crazy, though he would never admit it to me.) 

In any case, this phase of my treatment is coming to a close. They did tell me that I can expect my symptoms - which are mainly fatigue and the ugly rash that extends from my collar bone to my breast bone - to intensify after my radiation therapy ends. I am armed and ready.

Hooray for DMV!

The good news....DMV cleared my driver's license this week. I have not received the official piece of paper in the mail, mind you. However, when I completed my behind-the-wheel test, I was told that I was "good to go". Can I tell you how much I loved closing that door? My February seizure added a unwelcome level of stress to my recovery. Yes, cancer hijacked my health for a bit, but my freedom too? That probably bothered me more than losing my eyelashes. I am just saying.

So, radiation week four - check! I have some pretty angry skin, which is sporting an dense series of minuscule, red bumps, reminiscent of a diaper rash. It itches. It is not going to get any better. In fact, I am told it could intensify and my skin could crack and/or blister over the course of the next two-three weeks. Let's hope not. I am currently wearing a foam dressing across part of my chest, about a two-inch strip starting at my collar bone and extending down to my breast bone. The dressing (Mepilex Lite with Safetak technology) allows the skin to heal from the inside. It is pretty cool. I also have prescription for a cream containing hydrocortisone, stronger than the 1% over-the-counter-strength that I was using at the beginning of the week.

I do not mean to sound overly dramatic. Ugly as it is, it does not hurt. It itches a great deal, but the cream should help. In my mind, just like my hair falling out with chemo, my skin's reaction is evidence that the radiation is working. I need it to work; I want it to work. While my cancer is gone (this sounds more awesome every time I say it!), abnormal cells could still be lingering in my chest wall or skin. And it goes without saying that I do not want any abnormal cells floating around and causing problems down the road. It would only take one.

Needless to say, I am very glad the holiday weekend is here. I look forward to reconnecting with friends both and watching my kids eyes light up as they watch the firework shows both tonight and on the 4th. I look forward to hearing their laughter and excitement as they swim and play with friends. I look forward to relaxing on my couch. Mostly, I look forward to a three-day break from radiation treatments. Only six more treatments to go!

Have a happy and safe 4th of July, all!

Radiation, Week Three

Radiation, week three - check! I am tired. Very, very tired. My skin is starting to show some signs of trauma - just really small bumps right underneath my collar bone. At least, the weekend will give my skin a little time to recover. At the beginning of the week, I was trying to go to bed early - like before the kids. Towards the end, I did not fair as well, in that respect.

I am really trying not to let radiation get the best of me. I was sad to miss my friend's birthday party this week and since, vowed not to let the fact that I am tired limit my participation in the important things. However, I recognize that I need rest, so I will not be a cranky mommy and also, in order to be productive at work. It is just a balancing game, like anything else. It is a game that I am winning!

At work yesterday, I had one of my most productive days in a long time, completing one grant, one letter of intent, two signed grant agreements and communicating with two other of my most favorite/prominent donors. I remind myself that a day like that would have made me tired regardles of receiving radiation treatments. It has been a busy work week, but I found that it helped me to not dwell on my physical symptoms.

The best part about this week is the surprise visit from my great friend and college roommate, who contacted me Monday just to see if we were going to be around, should she and her family come to San Diego. Great fun. Today, one of my other college roommates will be in town with her family. A complete coincidence - what an awesome treat for me! Our kids get along famously, which makes it even more special. And the fun continues, culminating with a trip to Legoland this coming Tuesday.

Just as fun as all this though has been watching the World Cup with my son/family. I love the way Harrison gets so excited to watch the games. The US played at 7:00 a.m. this past Wednesday. We woke up at 6:58 and it was like we were late for Disneyland or something, with Harrison rushing to find his US soccer jersey in order to watch the game in our own living room.

And my daugther? She is not as excited about the World Cup. Though she did lose her two front teeth this week. A right of passage, in her mind. She is too cute for words sometimes.

So radiation will ensue on Monday. I am trying to stay positive. This past week, I have had quite a lot of help. Next week, I know I will find another avenue of distraction, whether it be World Cup, Legoland and/or a good book. I am winning the game! July 13, my last day of radiation, is just around the corner. The countdown is on!

Radiation, Week Two

I finished week two of radiation yesterday...week two, less one day (I started on a Tuesday). It has been a hectic week. Nothing too out of the ordinary. Though, the stress of work certainly had me ready for the weekend. I am really trying to take a back seat and let my boss make the decisions in my area of expertise, Foundations and Grants. However, I see things that need to be done and I do them. In the past, he counted on me to make recommendations, consult on department-wide on projects, only consulting him for big decisions and to let him know what projects I was working on. This was all within reason of course. Bottom line, I was accountable to him for all business to do with foundations and grants. Now, he assigns me a list of projects....and I just give him progress updates.

By my own accord, my list of projects is growing, though I am trying to abide by my limitations. I work at the office on Monday, Wednesday and Fridays. I work from home as needed on Tuesday and Thursdays. This past Thursday, I was just too tired to work, even though grant deadlines and other work worries deprived me of sleep the night prior (which may have been why I was too tired to work). The old Marsi would have found a couple hours to work, regardless of how I felt. I did not. I opted to read my book and watch Harrison practice soccer in our backyard. I did good.

So....onto week three of radiation, this week. I am a bit tired. My skin is still doing ok, though I learned the hard way on Thursday how sensitive it is when I inadvertently got sunburned after reading my book outside. Ouch! At least I have the weekend to heal.

I met with my radiation oncologist on Tuesday. She told me that my worst side affects will occur the two weeks after radiation ends. Hmmm.... My last day of radiation is July 13. I am not so excited about dealing with this stuff into August. Steve and I also met with my neurologist on Thursday. Apparently, my EEG shows significant improvement over my previous EEG. Since I am epileptic, as expected, it is still abnormal but improvement? Wow, maybe the chemo had an adverse effect on my epilepsy? Another hmm....

My job for the weekend is to sleep and to make sure that Steve has a great Father's Day. In honor of Father's Day, my friend suggested that we all change our Facebook profile pictures to a picture of our dad. I found a picture that I liked so much that I thought I would share it here too. It was taken at Christmas after my third round of chemo. (By the way, unlike this picture, my hair is coming back in full force....not enough to share a picture here, but hopefully soon!) Included in the picture are myself, my dad and my brother. I love my dad! He is such a great person and my hero, really. Well, both of my parents are my heroes. But this picture is how I always think of him, smiling. Happy Father's Day, Dad. I love you!

Defense

I was devastated as I watched Harrison hug my mom last night, tears running down his face. It was a hard game to watch, especially knowing that to advance in TOC is something that Harrison wanted so badly.

Baseball. It is so much different than soccer. During soccer, kids get the chance to make 100 or more good plays a game. Well, maybe not 100, but sometimes it comes close. In baseball, not so much. In soccer, Harrison plays every position. He loves to play goalie, or "keeper" as I have learned is the preferred phrase. But his speed and dexterity also lend themselves to forward and sweeper. However, I think he is a natural defender. Put him in fullback on the left side (he is left-footed) and not much is going to get past him. He makes impressive defensive plays.

I felt like that is what he was doing yesterday in his baseball game. Defending. The other team was aggressive. They were playing with intensity and spirit. Opportunities to make those great plays come few and far between. Harrison's team needed to make more of them. Though they rallied, in the end, they fell short.

As I previously mentioned in another blog entry, his team was the SCLL Minor League Champions last year too. They did not make it past the first week of TOC play last year - I think this made Harrison even more driven to make it past the first week this year. Harrison laid his heart on the line. He fought hard, but in the end, popped up his last hit and it was caught in the infield, resulting in out three of the sixth inning. Game over. The Mudcats are not advancing. His heart was broken, at that moment. My heart broke for him.

When I was putting him to bed last night, he looked at me and said, "There is still a chance that we play Monday, right?" There is still a slight chance, based on a complicated calculation that I do not know enough about to explain. (Essentially, there is a three way tie for 2nd place and the top two teams advance.)

His hope is my hope. And there is plenty of that to go around.

Reflecting back on my experiences of the week and in particular my radiation therapy, I realize that hope and defense have been an every day practice for me. As the best defense is a good offense, I slather salve on my skin whenever possible. I also started going to bed at 9:00 p.m. This is very early for me....so, it also means that I have been waking up at 4:00 a.m., having already had what my body feels is a good nights sleep. However, if fatigue sets in, I have already implemented a preemptive strike. I am also taking my vitamins. Or trying to remember them anyway. My memory for this kind of stuff is not fantastic.

Interesting thing, I had a skin care session with a nurse this week, who told me that my worst side effects will occur in the two weeks after radiation therapy ends. Ugh. Obviously, I knew that the side effects were cumulative my skin would take a while to heal...but this means that the harsher side effects may last into August.

I am doing well, however. If there is anything I have learned from Harrison, it is that defense and hope are not mutually exclusive. My success will require a balance of the two. I can do that.

Moving forward, watching Harrison play soccer is one of my favorite things to do. He just left for an indoor soccer game this morning, as a matter of fact. (Go United!) I know it will lift his spirits. Baseball is in the past now...and he will focus his ambitions towards the upcoming soccer season. My little defender. My little princess is sitting next to me on the couch, singing. All is right in my world. Only four more weeks of radiation...and counting.

So today is Steve and my 14th wedding anniversary...

So today is Steve and my 14th wedding anniversary. It is also my first day of radiation therapy. A bit ironic, I think.

I was prescribed 25 radiation sessions that will occur five days a week, for five weeks. They are radiating the right side of my chest wall and my remaining lymphnodes, which reside under my collar bone. After having my first radiation therapy session this evening, I do not have much to say about it. It did not hurt, though I did feel something. I would equate it too one of those times where at days end you may say to yourself, "I think I am a little sunburned", but it does not really hurt to move. One of those sunburns that would not classify you as a lobster and is gone the next day. Something like that. However, side effects from radiation are cumulative, just like chemo. I guess it is good thing that I am permanently numb (for the most part) on the right side of my chest.

Anyway, I have decided to treat radiation as if it were just a normal part of my routine. I have a theory that if I make a big deal about it, I have given radiation power and its side effects will intensify. Please know that I appreciate offers to help in any and all capacity - but I am going to try this on my own first, as least the transportation and routine part.

And, if you ask me how radiation is going. I might say, "fine" or "it's going". Not that I am asking you not to ask, I just do not want you to be surprised by my answer. I am trying not to get in the habit of complaining, because I do not think it helps me, or anybody else.

So yes, I may be too tired from time to time. Or I may not be able to go to the beach and sit in the sun. But please ask. I will let you know.

And, happy anniversary to my beautiful husband. It has been a tough year. I know this is not exactly the way he envisioned spending any of his days with me, much less an anniversary. Yet, he has been my champion through it all. If you know Steve, you would expect nothing else. I am truly lucky.

Harrison and the Mudcats

I am so sore this morning. I knew I was tense yesterday at Harrison's championship baseball game, but holy cow!

I write this post this morning, thinking not of my cancer or radiation but about my son. Harrison is 10 years old. He is the light of my life. Madison too. Last night, however, Harrison stole the show. For those of you who know Harrison, you know that Harrison has an inherent, natural athleticism that allows him to hold his own at about any sport he tries. Last night was baseball's turn - championship game for San Carlos Little League's minor division: the Mudcats vs. the Riverdogs.

I cannot say that Harrison made any remarkable plays. I can't say that he hit a home run or made a diving catch. Like in every game though, he hit, he threw, he caught and did his job very well at every position he played. He has the third highest batting average on the team. He has a great arm and is consistent.

Last year, Harrison played for the Durham Bulls and they won the league championship. Last year, Harrison was the pitcher they put in the close the game, with bases loaded and a score of 19-18. We prayed. Harrison did his job, the Bulls defense did their's. The Bulls won. There is no better feeling than that.

So you might imagine how Steve and I were feeling last night. The score was 12-12 and Harrison was the next pitcher in line. But that was not the worst part. All season long, Harrison's team has had a remarkable way of falling apart (sometimes a little, sometimes a lot) for an inning or two and then pulling it together and winning the game. This is not every game, but of course, this is what happened during last night's game. Finally, in the 7th inning, which is overtime in little league play, one of Harrison's teammates stole home and we won the game, 13-12. Us parents started breathing again. Harrison never had to pitch.

I wanted this win so bad for Harrison and the Mudcats, a desire even more intensified by the fact that he was on the winning team last year and would be the only one from the Bulls that achieved this accomplishment this year.

I am so happy for Harrison. He is a champion - two years and a row. Now, we move on to regionals....and Harrison is pitching on Monday night. He needs to pitch the game of his short career. Since he did not have to pitch in regionals last year, this is a new challenge! Count on me and Steve not breathing while he is on the mound.

As I sit here and write this, my family is waking up. My daughter just came downstairs and apologized to my son for being "late". Late for cartoons, I guess. So cute. And even with my sore body and the fact that we have to race off to Harrison's indoor soccer games this morning, I am happy. Cancer be gone and stay that way, please. Yesterday was just a great reminder that life goes on....and so will I.

I visited the radiation machine today....

I visited the radiation machine today. I had a "mock run" of my radiation therapy. They lined me up. They took x-rays. The doctor gave a sign of approval. I stared right into the mouth of the machine where the radiation will emanate. It looked like it had teeth, as it stood ready and waiting to zap its electronic medicine.

Lying there, perfectly still as instructed by the technicians, alone in the room, the moments felt like an hour. I was emotional, fleeting as it was. I made myself take deep breaths. I thought about how I did not want to go back into treatment. I thought about the cancer and how it was gone. I thought about the beach. I thought about Steve and the kids. I thought about my beautiful skin and what I am about put it through.

I know radiation therapy is the right decision for me. Cancer is a beast. Much more ugly than the machine I laid under today. Not at all discriminating. It does not have technicians that line it up in the perfect spot. And in my case, with my type of cancer, if it comes back and metastasizes, outcomes are not good.

So, radiation is definitely the way to go. I just have to get there. And I will. Emotions in check.

Radiation, here I come!

So, I have to get my game face on. Radiation starts June 7 and plain and simple, I do not want to do it. All the tests/studies say that I should...and in my head, I agree. Just the mom, the wife and the girl in me is just done. I am tired.

I went back to work, part time on May 20. I am working three days a week for 24 hours in total. It feels good. I like feeling useful. I like knowing that cancer and chemo did not over run my brain entirely. In the week and a half that I have been back, my muscle memory is returning. I still know how to write at the same caliber as before, and I am comfortable with the grant process. Just like riding a bicycle. I am working on a couple of great projects and thriving.

Today, I have a couple of doctor's appointments unrelated to radiation. I have an EEG at 1 followed by an appointment with my plastic surgeon at 3:30. My EEG will put me one step closer to keeping my driver's license and our meeting with my plastic surgeon will help us verify that the plan for my reconstructive surgery that Steve and I have mapped out in our heads is truly on the right track.

And yes, I said keep my driver's license. I have a driver's behind the wheel test on June 30. Last week, I called DMV due to the fact that the paperwork said, "Your license will be suspended if you do not show up." Turns out, they never suspended my license at all since I had the seizure on February 12. Hmm. This does not change the fact that my neurologist recommended that I do not drive. However, in my mind, it does give me "license" to drive occassionally. Afterall, I do not want to go to my driver's test cold. I had enough trouble with that the first time around.

So, I need to get my game face on. I know my driver's test will be just fine. I know radiation will be just fine. Before chemo, to help get me fired up, us girls all put purple streaks in our hair. I do not have enough hair yet to do that. Although, after leaving Ally's shop after getting her hair cut, Madison told me this weekend that she wants a red streak in her hair. Another hmm. Not sure that I am down with a permanent red streak in my six year old daughter's hair.

Anyway, not sure what it will take to get my mind where it needs to be come Monday...maybe nothing. Maybe just another wonderful date with Steve, like I had this weekend (Thanks, Mom and Dad!). Maybe another good conversation with a good friend, like I had with my friend Barbara yesterday. Maybe Lahaina's. One thing is for sure, I will get there. I have no doubt that on Monday, June 7, I will be ready for my next therapy that will finally kick cancer to the curb for good.

Tomorrow, Work; Thursday, Hair?

I cried. I sat with Steve and cried like I had not cried in a long time. My emotions are usually in check, as I am quick to not give power to negativity that may result otherwise. BUT on Sunday, when I saw the 5 o'clock shadow on my head and felt stubble where there was none just two days before, I cried. My hair is finally starting to grow back. Steve says that my hairline resembles that of Captain Picard, Star Trek, The Next Generation. I am hoping my hair resembles that of G.I. Jane towards the end of this week or next. Either way, I am just happy to have something more than a little stubble on the very top of my head. For a while, I thought it would grow back in the shape of a mohawk because my head was so smooth on both sides. Now, I actually have a hairline that is filling in every day.

My scar is healing nicely. However, if I have spoken with you recently, you know that I am a little "over" having one breast, a six inch scar, no feeling and extra skin across my chest to about half way down my upper arm, no eyelashes on my left eye, a very few on my right, eyebrows that are just barely hanging on and no hair. No matter how great anyone tells me I look, the combination just is wearing on me a bit. That and I am tired of my head and neck being cold. I think this is why I was particularly emotional on Sunday, or maybe it was because I had not had a good cry in a while. Either way, it was a moment I will never forget.

Tomorrow, I will dawn my wig and start working again. I have an early morning appointment at Rady Children's Occupational Health. Assuming they grant me clearance to return to work, I have a 9:00 meeting with my supervisor. We have already briefly spoken about a couple of projects where I will need to focus my energy. I am going to work Monday, Wednesday, Friday for now, full days, which I imagine I will continue through the duration of my radiation treatments. Am I ready? Sure. I know any day I start back will be exhausting for me. I will miss being "around" for my kids and Steve. However, routine is good and I am needed at work. That and I have a new found focus now that I am cancer free. My health and my family are at the forefront, but I have more energy and brain power that I have had in a long time.

On another note, Steve and I meet with my radiation oncologist on Thursday. I am guessing I could start radiation as early as next week. I am not terribly thrilled but in researching my options, I am about 99% sure that having radiation provides the best chance at keeping cancer at bay (more to follow after Thursday's appointment).

In the interim, I am just going to focus on making today the most relaxing day possible. I started a new book last night. I am thinking that reading and pajamas seem to be the order for the day. Hmmmm, I think I need more coffee......

Dance Like No One's Watching

I have been feeling good. Actually feeling really good, until I tried to dig through and lift several boxes today in my garage. I was searching for a scrapbook for my daughter. I used to sell Creative Memories (scrapbooking supplies). After Harrison was born, I could not keep up with my CM customers or even scrapping my own books. That was 10 years ago. I have held on to ALL the materials and am now getting back into it...with Madison in tow. She loves it. She has a knack for it. (Shhh! Harrison does too.) Today, Madison graduated from her "Hello Kitty" kiddie album to a 12x12 scrapbook. If you have seen my garage, you know that my plight to find my CM materials was not an easy one. To the detriment of my right arm, I persevered, though. Thankfully, the swelling has gone down mostly. I guess I just needed the reminder that NO, I am not completely healed.

Still sore, I was determined to take Cooper for a walk, this evening. I was not going to let a little swelling get me down. (My remaining lymph nodes can get over it.) When I got back from my walk, I found a loose piece of paper lying amongst my scrapbooking materials. It is only page "one of two" and I have no way to easily reference its origin. Still, I wanted to share it on my blog. I am sure its title is familiar to to many of you. It is a perspective I share, now more than ever. It is funny to think that I printed it off of the Internet so long ago. Enjoy!

Dance Like No One's Watching

We convince ourselves that life will be better after we get married, have a baby, then another. Then we are frustrated that the kids aren't old enough and we'll be more content when they are. After that, we're frustrated that we have a teenager to deal with, we will certainly be happy when they are out of that stage.

We tell ourselves that our life will be complete when our spouse gets his or her act together, when we get a nicer car, are able to go on a nice vacation, when we retire. The truth is there's no time to be happier than right now. If not now, when?

Your life will always be filled with challenges. It's best to admit this to yourself and decide to be happy now anyway. One of my favorite quotes comes from Alfred D. Souza.

He said, "For a long time it had seemed to me that life was about to begin - real life. But there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life."

This perspective has helped me to see that there is no way to happiness. Happiness is the way, so, treasure every moment that you have. And treasure it more because you shared it with someone special, special enough to spend your time...and remember that time waits for no one.

So stop waiting until you finish school, until you go back to school, until you lose ten pounds, until you gain ten pounds, until you have kids, until your kids leave the house, until you start work, until you retire, until you get married, until you get divorced, until Friday night, until Sunday morning, until your car or home is paid off, until spring, until summer, until fall, until winter, until you are off welfare, until the first or the fifteenth, until your song comes on, until you have had a drink, until you have sobered up, until you die, until you are born again to decide that there is no better time than right now to be happy....Happiness is a journey, not a destination.

I Cleaned My Fire Place Today

I cleaned my fireplace today. I kind of cleaned it anyway. I am no chimney sweep, after all. This is not a task I typically consider completing. In fact, I do not think I have ever considered cleaning it. However, yesterday, I cleared the boxes from the hearth and sitting in my usual spot on the couch this morning, I could not keep my eyes off the dusty grate in the fireplace. So, I cleaned it.

Before yesterday and the result of our remodel, all pictures not in photo boxes or rodent-proof containers were stacked on my fireplace hearth instead of the garage. The unorganized piles were an eyesore. BUT as I tirelessly sorted...oh, the memories I found scattered throughout: precious family memories; evidence of current and past friendships; the birth of both of my children; birthday parties; our wedding; college; vacations; and pictures of people who have left us long ago. All day long, the project kept my mind on happier times and off my impending oncology appointment.

Today, Steve and I visited my oncologist, Dr. Sweet. Much to our dismay, he did not give us a definitive answer on if I should pursue radiation therapy. He did say that my outcomes from my chemo/surgery combo are excellent. We also discussed some of the recent published studies that say cancer patients who suffered from my type of cancer have a better survivor rate if they have radiation. Thanks to Kelly I already knew of these studies. And really, based on what Kelly already told me, I knew that Dr. Sweet would refer me to a radiation therapist. That is exactly what he did.

Dr. Deree (my surgeon) says there is nothing left to radiate. Steve and I are not sure where we stand. Part of me does not want to put my body through any more harsh treatments. I feel like maybe I should take it as a sign that I came through chemo and my modified radical mastectomy strong and that maybe this strategy is not the best idea. I still have another mastectomy and reconstruction to tackle.

Another part of me wants to do whatever I possibly can to keep cancer at bay for as long as possible. However, as cancer is a different sort of animal, whose to say anything really keeps it at bay. I know diet and exercise are a given, but who is to say that radiation is going to kill the only abnormal cell in my body? As Steve said, any cell can mutate at any point.

Either way, I am confident that the radiation therapist will be brilliant and Steve and I will make a very informed decision. I bet I even end up having radiation.

As for an update on my healing process from surgery, my scar looks incredible. It is about six inches long and despite looking a little haggard on each end, it barely looks like anything. I am still bandaged where my drains lived for 10 days. I also still am not using my right side for anything strenuous, but I am walking Cooper, our 80-lb golden retriever, for 15 minutes each day. My pain has subsided substantially.

So what now? Until we decide on radiation, I am going to enjoy my days of leisure at home. I am going to enjoy my newly decorated house. I am going to continue going through pictures and am even going to take up scrapbooking again. Most importantly, I am going to make new memories with Steve, my family, the kids and friends. Isn't that what it is all about?