Oh, Baby, the Places you’ll go!

Oh, Baby, the Places you’ll go! This is the title of the tiniest book; it measures less than a photograph; yet it's the biggest book you can imagine. Inside Dr. Seuss has woven a plan for all the places you and your baby will go...places like Sala-ma-Sond and McElligot's Pool. Places that only an expectant mom can dream about. When I was pregnant with my son, it seemed the world was at my feet. Our little family would travel the world with our boy, and experience EVERYTHING....we read this tiny book full of big promises to him every night while he rolled in my belly. But, just three weeks after he was born we received the devastating news that I would battle Multiple Sclerosis for the rest of my life. My feet were to be stilled by this horrible disease. I'd be lucky to experience anything at all with my frozen, incompetent feet. The tasks that seem 'ordinary' for most families seemed now beyond reach. Everything from hosting friends and family to play-dates and small park outings needed to be meticulously planned. Our wanderlust to explore the world quickly morphed into a blueprint for the barest survival plan. By the time our small family moved to Phoenix my family had dispersed to the furthest corners of the continent, Philadelphia, Florida and Arizona. And, my MS had flared to the point that the top Neurologist in the country exclaimed "I just can't get in front of this thing!" I mourned the imminent loss of mobility and along with it pieces of my pride. Yesterday, my certified dog and I completed the hiking loop at Slide Rock in the pouring rain. Our triumph was huge as I beamed at my husband. Once again the world has opened up to all the places we might go because with my dog at my side I can go anywhere and experience anything with my family. I no longer have to sit on the sidelines watching the world go by. Having my dog by my side not only gives me the ability to participate, but also the confidence to do so. I have a far diminished fear of falling in front of my child and a far increased confidence that I can once again experience the world. We will visit the Jungle of Nool and McGrew Zoo! My family refuses to accept that I "need" a service animal. Just wait until they see me climb the highest rocky peak with my dog by my side or hike the graveled pathways of a forested hidden castle with confidence and a broad grin on my face! I would love to visit Florida once more and with my extended family walk the daunting curves of Disneyland. I'd love to conquer that beast! So Fort Lauderdale, Florida we come...Oh, Baby, the Places You'll Go!

Every day I thrive is a victory in the face of terrorism. Every smile on my children' face, every beat of their hearts. Every time I triumph over the smallest challenge I give the proverbial 'finger' to the terrorists that tried both in '93 and on 9/11/01 to eliminate my future. 10 years later, if I close my eyes, I can still feel the ash on my face that looked like innocent snow. On that day I kissed innocence away that allowed me to believe for one second that it was pilot error. The day that took a nation and forever changed the balance between privacy and safety. Thank you to those who continue to fight for our freedom and our safety. And, to those who survived through that terrible day, I recognize your soul as being partly lost to that horrible act. For no one can ever recover fully in the face of such naked evil. To move past it will never be enough. To thrive is the only option. In a sudden rush, if I let myself, I can recall with stunning clarity the tragedy of a world that changed forever. If I let it, each heartbeat of fear, is one 'they' win...that pumps blood black with fear and anger for what we lost that day. For a nation of lost innocence. For a nation of penetrable borders. For a vulnerable USA. We can never forget. We can never stop...but also, we can never move on.

Scars

I have a new friend from all this old cancer...we didn't even know each other. But, the day I was diagnosed she and her husband Wai dropped everything and arrived at my door to support me in any and every way. They sat at my kitchen counter and told me to be afraid, but to move through the fear. You see, Erin is a two time Breast Cancer Survivor. She understands the disease all too well. But, no amount of preparedness can ward away the cancer demon when it comes knocking on your door. Emma, her four year old daughter was diagnosed yesterday with a Liver Sarcoma. Now, you don't need to be a parent to know that as one you would do everything possible to block the pain from your child...to have it for them. To fight and conquer. As a parent it seems like your fight is double than it would ever be for yourself.

I went to visit the hospital today. Emma was having a scan, and she wasn't in the room, but the emotional pain was so evident on Erin and Wai's face that the pain became a physical entity. A monster that could swallow you whole if you weren't watching.

We began to talk about Emma's recent surgery. Her scar that she'd have almost entirely across her belly. And, of course, Erin said to me "I don't care how many scars she has, just so that she comes back to me" Of course we agree.

And as I was reading today a passage jumped out at me and I had to write it...in a way that a writer catalogues inspiration that might vanish into thin air. It goes like this "On the girl's legs were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived." -Chris Cleave, Little Bee

To Test or not to Test?

I am constantly guessing and reguessing this process. To Test or not to Test? That is the question! If I had let the Dr.'s convice me that given my particular set of circumstances, that there was NO WAY that I could have cancer...then I'd probably be much much worse off and not have found the cancer(s) as early as I did. On the other hand, ignorance being bliss, maybe not knowing anything at all would have been fabulous and I could have just lived life until...well, until. In any case, the protocall is that I get tested once every 6 months. But, because there are various tests available, through different Dr.s I have the 'ability' to be tested almost any month of the year. MRI, mammo, ultrasound, CT upper and lower and so forth. But, with the constant re-assurance that indeed there is nothing there comes the almost unbearable stress that indeed there might be something. Take this last exam for example. A CT of the Thorax, Abdomen and pelvis with contrast. During the exam I noted to the technician that I was feeling an ache in my right side when I fully inflate my lung. Now, I've had this sine the end of radiation and thought is might be some collateral damage form the treatment. But, I think because I mentioned it, they took a close look. Now, let me interject that I have told every doctor who would listed about this ache. I even had my radio oncologist look at the last ct for himself for assurance, but, there it is in black and white..."there is a focal cortical lucency of the right 3rd rib in the anterior axillary line that is stable since 10/15/09 CT without adjacent soft tissue mass. This is nonspecific and would not exclude neoplastic or prior posttraumatic lesion. Consider bone scan if needed." Now, let's review my history...there's something there...there's something there...there's something not right right HERE! Three years of insisting that they should look harder for whatever it is that was in there...so, my experience is that unless I am hypervigilant, they wont find 'it'. Whatever 'it' is...I feel like if I don't find it then they won't look hard enough either. That's a lot of pressure on a non-doctor regular old person. Too much. So, of course I made literally 6 phone calls...one to the radiologist reading the exam, on the the oncologist, and one to the radio oncologist. Then, just to be extra sure...one to the nurse practitioners of all those doctors too. I'm exhausted...not just from fighting this fight, but also from having to be my own advocate and fight so hard for someone to pay attention. Undoubtedly the standard response tot his test will be that because there is no change in this 'lesion' that it is 'nothing', but I want to be really SURE that it's nothing, not something...so I am the loudest patient in Phoenix right now...and hopefully all this will be for 'nothing' and I can sleep well tonight. Perhaps if I did no testing and just went about the living part, I would not be as tourtured by worry, but then perhaps I'd be shorting the living part ever so much hastening me to the potentially dying part. So, to test I go...

Transformation

I've had something of a writer's block. I don't have an explanation...I just haven't felt like writing. A lot's been going on though...

On April 6th I went in for a total hysterectomy, oopharectomy and abdominalplasty. I was the beginning of the end, and for once during this long road, I am thrilled! I have had no complications form the missing 'lady parts'. Not a single hot flash, cramp or dot of blood. Just one day it was there, the next it was gone. Good riddance...

But my tummy...OMG, my tummy is soooo amazing. It looks like someone 'faux painted' a tiny flat belly onto the canvas of my skin. I have an occasional thought, be it awake or asleep, that my belly will come back somehow. That it will unfurl like a giant slinky onto my lap. That I will yawn and all the internal stitches will pop one at a time like pearl buttons on a tight dress. The surgeon assures me that the work is permanent. I feel like I have big belly post traumatic stress disorder. It's real people!

The greatest thing, has been the biggest surprise of the month. I hadn't realized what the 'toll' had been for my survivorship. First there was infertility, then 9/11, then 2 pregnancies, 2 c-sections hundreds of pounds gained and shed, Multiple Sclerosis and of course Bladder and Breast Cancer. I hadn't realized what a price I had paid for survivorship of each of these events. I didn't know that life had chipped away at my femininity, to the point that I didn't really feel beautiful even when told I was. My new tummy brought me back my groove. I always knew that genetically my belly was going to have an uphill battle. My grandmother didn't know that she was pregnant with my Aunt Arlene until she went to the Doctor thinking she was dying from cancer because she was bleeding. His exclamation "You're going to have a baby!" was followed shortly by the birth of Aunt Arlene. She had a big round belly, and I can only speculate...thought she had gas??? So, when I had jelly belly I knew nothing short of a tummy tuck would help. I have been thin and still had a gi-nourmous gut. Finally, the presence of a large fatty lipoma and the hysterectomy recommendation laid opportunity squarely in my lap.

When I look at myself now I barely recognize who I am. Blond, short hair. Medium height and weight, flat belly...who is that?

It's a girl...a real girl...!

The begining...again!

I went for my Herceptin infusion today and there, much to my surprise was an order for the new medication...Zometa. Here I was getting the chance to start the tacked on three years of extra meds early. In my mind, my sentences ran concurrently and I would have to complete one treatment before getting another. Not true....cycle 1 complete of the 3 years worth of 6 month treatments checked off. These are the stats: Most breast cancer, if it returns, returns in the bones...this drug makes that happen one third less by strengthening the bones...Bring it on...

Also, there was a lady there that was beginning her first chemo after a double mastectomy. She looked terrific, and it looked like she felt well too. Her husband, however, looked like she was being put in front of a firing squad. He just look upset. Period. In all the many times I had been to treatment I had never seen anyone begin. I also saw an ending today...someone 'graduated' from treatment. They sang her a song and threw confetti. I'm not altogether sure which is more frightening...that there were no beginnings or no graduations...

Thank you dear friend Marci for going with me again to treatment...again, I wish it was shopping!

'toxic' positive thinking

Through-out my treatment one of the things people would say to me would be about perspective, or attitude. Now, don't get me wrong, this is a perfectly fine thing to be saying to someone, especially when theirs' is good. In my case, I do have a good attitude, though not necessarily about my cancer. I don't believe in my mind that I will never see this disease again, and that this is my one and only time to conquer cancer. Rather, I have a 'wait and see' attitude. More cautious then optimistic. I was speaking with my friend, who also had breast cancer about this very thing and imploring her to find the 'reason' or life lesson that we learned through this experience. Her comment was "Why are you putting such pressure on your cancer??? Maybe there's no lesson...maybe it just happened." Another said to me 'Imagine if every time that you had a cold or a flu or something else you expected that experience to 'teach' you a lesson. You'd always be disappointed!' Good point. I may never know. And, to that end I must also circle back to my original thought about positive thinking. I know that there are plenty of people out there with a surly, negative, and grouchy nature that just sail through cancer and treatment and never look back again. I also know that there are plenty of positive, laughing cancer victims. I've decided that my thoughts can't change my destiny, but I sure am going to try to have as much fun as I can on my way.

I remember being very little and riding in my cousin's car. They were a few years older than me. They were talking about a girl that they had just waved to on the corner. I even think I remember her name..."Alyssa". Anyway, they were telling each other that Alyssa's complexion was horrible...just riddled with pimples...but, that they never noticed because she was always smiling and had such a beautiful smile. That experience somehow imprinted upon me and throughout the dehumanizing side effects of chemo I remembered to smile. I'm sure that this is what people saw as my 'positive' outlook. I know that for me, remembering how to have fun and move forward past the indignities of baldness and weight gain and orange circled eyes I always had my smile. That never went away. And the pressure of trying to find a life lesson or 'think myself well'...sure...whatever (I say while smiling)...