retired warrior

Today my status changed from warrior to survivor as my last visit to the radiation table was at 8:15 this morning. Ironically I was not as elated as the last day of chemo, maybe because I feel like I've been wielding a katana for 9 long months slaying dragons on my daisy path. I can't lie, I'm exhausted. There will be the burden of keeping vigil for rogue cancer that I suspect will never truly leave my life, I'll keep a watchful eye on long solitary walks on my path because I understand the danger and the statistics as well.

 I currently have fresh wounds from surgery and my radiation burns are a bright festive red that are expected to peak on Monday before starting to heal. I don't feel like celebrating with a night out on the town but its important to mark it as indelibly as the moment I was told I have cancer. I was having such a lovely life and I want desperately to think that this day will mark the beginning to an equally wonderful life. Unfortunately it's not that simple and I'm not quite the same so there is much healing to be done to my psyche as well as my body.

When I close my eyes I imagine my loved ones that are gone cheering for me especially my parents who would be so happy that I fought so hard to stay here with my children. I've picked them daisies when I felt closer to there than here and in my minds eye my mother is holding them in one hand and stretching the out to touch me with the other. 

With all that cancer has taken of my flesh it took nothing from my spirit - For that I am the most grateful for and I suppose that is the thing I should celebrate. 

Our spirit is intact even when our bodies are so broken- I never really knew that until I took my first step onto my daisy path. And although this is a path you can neither retreat from or jump off of-  it's purposeful loveliness will transcend from this world to the next.

Its time to tend to my daisies here amongst the living, without war raging on around them they will have a chance to look tall and strong by spring...

what would you do with one hand on your head?

Its been quite a while since I've had the energy to share my thoughts. So much has been going on both physically and emotionally that I don't know where to start so like I always tell my kids, "start anywhere and all the pieces will come to mind and make sense." so here goes

I'm 24 of my 33 daily radiation treatments completed, its has been grueling as you know for so many months between surgeries, poisonous chemo and now burning radiation. 

We leave for my appointments early in the morning during rush hour which reminds me of my life pre stroke when I had a fulfilling career. It seems like a lifetime ago but on November 7th we marked the 3rd anniversary of Alans passing. That in itself is such a difficult day. Also I believe it was the day that started my tumble down this rocky mountainside - with the stroke at his funeral and everything thus far. Every day when I make this drive to St Lukes I have my coffee in a travel mug and I remember that productive life and I grieve it, I drive into a neighborhood that I lived in when I was young and had my whole life ahead of me. Its a cruel twist of fate that the road to my healing is down a path of youthful memories. Perhaps God is trying to heal me through those thoughts.

In the middle of what's been a fatigue laden treatment of radiation I decided to visit my brother in San Diego. I felt compelled to go, I hadn't seen him for 6 years. We've had a strained relationship but my love for him is as big as when we were 5 and held hands for our christmas picture. So I got the ok from my oncology radiologist to miss a couple of days of treatment and the five of us made the flight from Kansas City to San Diego.  Yes I over did it and probably shouldn't have gone. I was able to see and hug some of my dearest friends that I literally hadn't seen for over two decades... I cant think of better medicine. Life is too short and our relationships are the true gift while we are here on this earth.

A few days after returning from our trip my first radiation burn reared its ugly head. Wow. These things are no joke. For me It was situated under my arm and across my chest. There is no escaping this discomfort. My arm held up causes me pain due to the complication of the cording from my surgery my arm down feels like an acid burn. The most insidious feature of radiation burning is that it gets worse as the days go by, unlike a sunburn that improves. 

Cancer has sucked for nearly 9 months - yes it has honed my patience, my tolerance for pain and my ability to keep my head above depression but I need to be done with this life lesson Lord. Please.

I had the BRCA genetics test and I came back positive. Which after a lengthy consult with my cancer team I made the decision to have a hysterectomy. BRCA 1+ like I am raises my chance of developing ovarian cancer by 85%,  uterine cancer by 40%.   Oh hell no! Im not doing this over again if I can help it, if they say your chances of getting cancer of the right foot are up by 85% I'd say take that too! Surgery is scheduled for this Friday Dec 2. Monday I continue with my radiation treatments. 

Thanksgiving was a success, with one hand on my head. I couldn't have wished for a lovelier time with my family. Therefore I have decided...

Christmas will not be postponed!

year 12

The last couple of weeks have been infused with too much emotion. I'm talking about the real life of being a mom to my beautiful kids and a cancer patient has finally converged and I think some days it's going to make my heart and soul catch on fire for being on overdrive.

Joe and Sophie are seniors. Need I say more? I really don't want this to happen- I've been joking with them for years but the reality is I never wanted our time together in my home to end and here we are on the final stretch. Them in a sprint laughing and nervous but ultimately excited for their life to begin. And me (now hobbled) trying to keep up  with them on their this final school year saying "don't go too fast you'll miss this so much some day". On the good days when I feel up to it  I go up to their rooms and make their beds and do some laundry. Like a junkie trying to get a last hit before going to rehab. Most days I haven't been able to keep up with our own laundry and they have been doing theirs for several years anyways. But right now it brings me back to a moment in time when it was part of my day and folding Joes jeans could be done sitting down...

Jack is going to suffer just like me I'm afraid. His sense of loss is heightened because of having  witnessed his fathers death when he was four. The four of us have never been separated and Joe and Sophie were like his mini mom and dad in my absence. He will grieve losing their constant company especially at bedtime when that floor in this big house will be empty except for him.

Yesterday was my first radiation treatment and regardless of my physical or emotional reaction to it we had Sophies Golf Banquet last night  which was paramount. So I found myself taking a much needed nap of several hours so I could truly take it all in... which I did.  She is so talented and well liked yet understated. Her quirky side comes out in subtle ways though- her team photo and her individual one was awesome- I'll have to try and scan one in later she never disappoints me with that sense of humor that makes me chuckle yet proud to claim her! She lettered twice! Go Sophie! One strong young lady almost ready to go out and conquer the world.

Joe Pat has his senior recognition for band at the football game tonight. I am really looking forward to that as well. As part of evening we were asked to make a poster board representing our band member that will hang at the school stadium. I made it. There I was in my closet (remember its huge) laughing by myself as I put the pictures together and added funny captions. I made it with so much love -- with a right hand that only works at 70% and all my fingertips numb from chemo I was like a 3 year old with the scissors! But no matter I had fun and I know that he will know that my love was in it and our inside jokes will remind him always of the relationship we have.

So here I am writing a scattered note to all of you today. I have 2 radiation treatments down and 31 to go. I was hoping this was going to be easier but after so many months fighting cancer my stamina is failing me... stayed tuned I'll get my thoughts gathered and update everyone when I pull it together.  For right now I'm riding on a dangerous mix of chemo, radiation, months of exhaustive thoughts and sadness over losing my oldest to two to the world.  I think love and my hope for their future will win over all of the other thinking.. 

When you let a positive emotion pull you there is so much more momentum in that movement than in the passive one of letting the negative slide you down. 

Heave Ho- everyone is going to have to pull!

ringing the bell

It was like a movie in slow motion all the way from the moment I walked into Panera Tuesday morning and started ordering pastries for the nurses in the infusion room, Dr B's office and the reception office. I felt elated inside... still not coming through to my face just yet.  

Sophie my heart, wanted to go with me since she was the only one that had not accompanied me to the infusion room  in all of these months, so with her in tow she was my walking streamer, balloon and noise maker all in one - SHE was excited for both of us. I am pretty even keeled even on my most joyous of occasions- thats just how life has molded me -- not Sophie she shines through my cautious demeanor every time and soon we are both skipping in her happy parade.

I have been at St Lukes Cancer Institute nearly every week for almost 6 months, everyone knows me and I know them. I know when they call me in that I walk over to get my weight checked, I pick a  chair-- I like the big plushy leather ones that are built for 250 lb. men. I sink right into them. When they aren't available I get stuck with the ones for petite patients like me and they feel hard and remind me I'm small and there for treatment and not to watch a football game at someone's dads house. 

It was different on Tuesday - as I seemed to notice the slightest details that normally wash out  when I go in there. 

I rarely look at anyone else that is there for treatment, giving them the privacy that I long for myself. I am not chatty - those of you that know me in person know that about me. But as I wasn't trying to soak up the images from my last visit to this 'healing' room something inside told me it was crucial to document it in my memory. 

I prepared a lovely card for Dr. B and set the words against the image of the tattoo that Sophie designed and we are all getting. I told the story of how the image came to be and how much we appreciated his staff. Doc was genuinely touched by it - but mostly he was pleased to see me walking out of his office against the odds of my triple negative diagnosis. I may or may not find myself back there again but he has used chemotherapy in its most aggressive way to combat the cancer within me and he was happy for me. I got a hug.

Soph asking a million questions and in my answering I looked around and noticed everything in living color in a place I go to normally with my eyes wide shut. 

The first thing you notice when you walk in is the 1000 cranes hanging in the center of the room...  the idea comes from an ancient Japanese legend which promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as a long life or recovery from illness. Sophie popped up and took a picture of them.... how many times had I stared at them and thought of the beautiful significance of it as I felt the poison pumped into my chest - and wondered if I could feel all of my fingers if I shouldn't try to fold a 1000 for myself and quickly remembered that I'm catholic...

The infusion room always seamed silent to me but reflecting on it now I understand that I shut all of the noise out to help myself cope. On this last day when I was purposefully  present it was loud and busy and there were people with no hair on their head like me walking around. It was surreal... But still it was a backdrop to the sounds and emotions I brought from home my daughters voice resonated loudly and the rest was a background chatter. 

Part of the ritual of the last day of treatment is that you get to ring a bell--- so as Soph finished reading her home work book about fallen angels to me, this chemical angel got her wings and we skipped out of there!

I was in and out of conciseness the rest of the day- lets not forget that I did just have chemo and for all my celebrating I was about to get my ass kicked...

I'm not absorbing it all yet- the panic from the free falling without having chemo fighting any rogue cancer cells left hasn't hit me yet. Maybe it won't. During six months I really feel as if I was a trapped animal in a barbed wire fence and when I relaxed and stopped fighting my body slipped out of the barbs. I have made peace that Gods will trumps mine. I will know when its time to go- this was not my time. The radiation will be one last insurance policy before I put this painful chapter to rest.

I rang the damn bell, I did not make any cranes, I never walked around bald in the infusion room because it was too cold in there, and in the end when my kids were in the room, they were all that I could see. Yup I am ok I am still me, still have all my priorities straight. I have a lot of living to do. Life is to short to put things off or not forgive. 

Go Live!

Frannie a Brave Dog from GA - reprise

(wrote this after my last transport- before cancer)

I transported Frannie the senior chow mix that was saved last week from Heard County GA from half way across Kansas to Denver yesterday. It was an outstanding feeling to be able to help her tired old soul.

What I didn't realize would happen is how her presence in my car would make me reflect so much on my own state of mind. And of course I thought I'd share this with you.

To better understand me I'll tell you all this - I lost my North Star (mom) when I was just a kid - so much sadness, grief, struggle and loss has plagued my life.  If I were to use just one word to describe me to someone it would be Survivor.  I think that is why I have such a soft spot for the mistreated abandoned dog that still wags his tail because it shows tangible proof that a soul no matter how beaten down can still shine bright enough to warm another.  These dogs warm my soul all of the time.

That is what I saw in Frannie yesterday.  At the hand-off she was shy yet gentle standing there in the windy Kansas field her fur was so gorgeous and it was blowing around where you can see the subtle variations of the blackness in the sunshine.  Her face, a little scarred reminds me of a little black bear cub.  The most heartbreaking thing I noticed was the way her eyes would not light up, it was like for all of the disappointment and pain she has suffered she was cautious and she would stand proudly and take whatever was about to come at her- Good or Bad. Her eyes, although not shining, were not dim either. There was something lurking behind them. Frannies courage in the face of the unknown made me cry for her and respect her.  In fact I cried for a good 50 miles before I regained my composure.

I am like Frannie, never wanting to be too excited for anything because I am cautious with my fragile spirit.  But I don't flee because I have experienced many surprising twists that led me to better places in spite of it all.  I will take life's beatings without flinching although inside I'm writhing in pain but I do not give up, because I know hope. I have choices and that understanding brings me hope and this is the fundamental difference -   this dog has never had choices or therefore hope.  I can't imagine the strength you'd have to have to endure so much knowing that you do not have options and what you are dealt; you must endure or die of... wait that sounds like my cancer journey.

Damn

I have overcome most of my experiences and found myself back to sunny fields many times; I find myself taking in stride the change life is just about to bring me – just like Frannie.

Frannies new mom met me at the Conoco parking lot in Denver.  I had Frannie on a lead and Jack in my other hand.  He was petting her head and explaining to her that she was not lost anymore, her new mom was on her way to take her home.  Then this kind woman in a Jeep pulled up…..jumped out and the first thing she said to this dog was "I've been waiting for you for so long"  And those eyes that had been missing their sparkle started shining instantly and Frannie not only wagged her tail, her whole body wiggled! 

It was inspriring

To a passerby it looked like a dog being returned to a loving owner that had lost her.  Who would know that this dog captured the heart of a lady in Colorado on the internet from pictures taken in the pound? That this dog had suffered so much neglect and loneliness half way across the country?  Who would know that Frannie traveled 1600 miles from deaths door to this woman who right then was as excited as someone being handed their newborn for the first time?

A beautiful odyssey 

When someone asks us how we can bear to see so much loss with dogs that don't make it out of shelters alive - we always tell the star fish story, and no one gets it…except for other people who have witness reunions of kindred spirits like this.

Frannie is not lost anymore 

Many of us with difficult memories of hard lives gravitate towards animals because perhaps humans have not been the kindest us either- lets learn from our wonderful canine friends- to not be afraid to stand proudly with courage and accept into our lives even the most unlikely scenarios- and when that moment comes that what you get is a positive outcome celebrate by wiggling your whole body! 

I'm off to one of my last three chemos and will remember Frannie standing in the sun waiting without fear... I will be that brave dog today!

brown eyed susans reprise

There used to be a big field where a couple cows roamed freely near where I lived It wasa strange little island of the country on that city block, completely out of place and unexpected.  I remember always thinking about how tranquil it was to turn and look at it for a moment before pulling out onto the busy street and losing the tranquility to traffic.  I was surprised the day I realized that it was covered in wild flowers... brown eyed Susans.   My favorites are the weeds... daisies, sunflowers and these yellow and brown flowers of late summer.

Have you ever tried to pick one? Tried to snap it at the bottom? It’s very hard, they are strong as nylon rope and they grow without any assistance from us. That is a flower worth admiring.  Self sufficient and adapting to what nature throws at it  then finding a way to bloom joyously just about anywhere it can find a tiny patch of earth.

  

My dad knew my favorite flower was the daisy and next to that this wild yellow one- they grow everywhere here in late summer and into the fall. For many years he filled my home up with the color of a sleepy summer  afternoon. For as long as he lived near me he carried a pair of small garden pruners in his glove box.  So that from August through late September my house was full of those roadside blooms - he would stop and cut me a bunch every chance he got  as he noticed them while he was driving.   He knew they were tough and never arrogantly tried  to break them off at the stem. Thus the shears that lived in his van, he was always prepared.  He’d carefully snip them like they were fine roses.  Never underestimate the value of a simple kind gesture.

Now, many years  after his passing I continue to pay the kindness back in the same way. He’s buried at the Veterans Cemetery in Leavenworth Kansas where the rows and rows of white headstones line the hills stoically.  It's always made me sad that so few of them ever have flowers. 

So I bring him daisies to his grave as often as I can and when the wild yellow started to bloom, I am ready. I carry the same pruners in my glove box and end up with so many flowers by the time I get up there that I make sure to share my gift with everyone else buried on his row. 

I haven't been up to see him as often since I've been sick, in fact yesterday I saw many many brown eyed susans on my way back from my failed chemo appt. It hit me harder than usual to think about him- I missed him so much at that moment and the memory of him with his arms full of flowers coming to my front door. It made me reflect on how much things change and how much things stay the same.  

My dad passed away in 2003, yet he had been bringing me flowers for so many years before that. Now many years after, the blooms still pop up at the same time each year. I often wonder if God took him when he did because all of this would have broken his heart to see; my being widowed, the stroke and now the cancer. I prefer to imagine him as my angel not here grieving for my troubles. 

We can choose to bring in a couple of weeds from the roadside and treat them with care as if they were expensive roses or ignore them until our cars have splashed mud and muted the yellow out of them. If we bring them in they will bring color, brightness  and joy to our life.

Regardless they will be back with as much perserverence and happiness as the first time you noticed them. Year after year. Lets learn from the weeds in our fields by relentlessly coming back and trying time and time again 

Thats what I'm doing next week when I go back to chemo...

Sounds of the past... can we go back? should we?

For well over 25 years my touchstone has been Kansas City, its where all the best and worst choices of my life have been made, its where my children where brought into this world and where my father left it.

My favorite house I owned is here in this city, a cape cod built in the 1940’s.  It was a few blocks from my dads house in an old neighborhood with 60 ft oak trees towering over all of the little houses in Waldo (South KC).  

I remember the feel of those smooth old wood floors under my feet, even now, oak floors still make me feel at home and the view from the window over the kitchen sink- looked over the big back yard and the white porch swing that my dad hung from the giant tree next to the flagstone patio that we laid. 

He and I would take drinks and sit and swing while the kids ran around catching fireflies in the summer.  It was a beautiful time for me regardless of all the other junk that went on during that time period. I will always cherish those days as some of the best in my life. Grateful that some of these memories were spared after the stroke.

It took three years of hard work to get that house to the condition it was in by the time we could finally sit and just enjoy it.  Stripping the wallpaper, endless layers over the plaster walls had to be removed painstakingly room by room after work every night, after toddlers had gone to bed listening to zydeco music...   It was a busy time with a demanding job but worth the many sleepness nights.  

I was thinking about this house because I heard it might be for sale again.

Can we really go back and reclaim our past? Will it reject us? My neighbors have all gone, so there wont be the shared margaritas on the front stoop or fireworks out front with our families... and no dad to walk over from his yellow house down the street. would it really be the same?

I can close my eyes and hear the laughter of my kids and cicadas chirping like it was yesterday... Yet I can close my eyes and feel my long dark hair cascading down my back too which is also gone. 

I guess somethings are meant to be part of our foundation, some memories are strong enough to be those blocks.  For now I'll leave them right there... I've got a lot to do in my life right in the present-2 seniors to get graduated and off to their next step, a 2nd grader to keep on track to be a linebacker for the San Diego Chargers and 5 more Taxol treatments, radiation and Plastic Surgery. Plus Alice reminded me that she has not had a proper coronation.

Glad I am grounded in reality. ;) Cancer hasn't taken my sense of humor away... 

Let go of the anger...

Some time ago I forgave, I mean I really forgave some very hurtful soul destroying things that were done to me. By people and by a universe with a very sick sense of humor. There was nothing I actively did to get past the emotion - the anger left when I stopped feeding it and its place a calm enveloped me. I guess if you believe that there is a master plan to all of this, life was preparing me for all that it was going to fling at me.

Some people that know me ask me why I’m not more angry. Of course I have gotten sad during the events of the last few years but I’m not angry or bitter about them - that is astonishing. I cant seem to catch a break... I should be pretty pissed off about now but I’m not. Who would I aim my anger at? my body? God? the universe? lawyers? the system? its different for everything that has happened. I'm ok with not pointing fingers.

So I started thinking about writing this blog yesterday for a dear friend who is having a hard time. I was going over in my mind what to say to her and all I could think is that I honestly don’t see a purpose in anger. Especially about things that I have no control over. I figure I’m already going to have to contend with unpleasantness why would I first distract myself with rage or revenge or obsessively setting scenarios of what ifs. Instead I aim my energy at getting through it, I am going to need focus and stamina. I see other people around me who are filled with anger and frustration which spills into every aspect of their lives. They walk around exhausted by the turmoil in their hearts.

What if we use anger as a catalyst, something to create momentum to survive the bad in our lives? Wouldn’t life be different? We wouldn’t waste such a powerful force... not even on the tragic losses like deaths, divorce or other of lifes betrayals- let alone the insignificant irritants like traffic, long lines or people not returning calls. Life will continue to happen with or without our blessings on the outcome.  If we only stop being angry with fate and roll into it we will suffer less and enjoy the good so much more...  Come with me and try it- the calm I’m swimming in is the perfect temperature.

Deconstruction

I have been feeling so much better on the taxol, amazingly I have had equally challenging emotions as I've been getting stronger and coming out of the chemo fog. I look around and realize that we have been floating along alone for the most part on the stormy sea and it both scares and makes me proud of me and the kids.  We are strong and united.  I thank God for not wasting a moment of opportunity for self growth on this journey I continue to learn so much about human nature, as well as about my own strength and forgiveness.

My energy has rebounded to something I only vaguely remember from my pre diagnosis days so I feel like superman when in fact I am just cresting on a day with a bad cold. But ever so grateful for it. Gratitude. another thing I thought I had nothing left to learn about yet there is an endless sea of lessons for that as well. I hope and pray for each one of you that you feel gratitude deep in your hearts for something unexpected-a person or small act of kindness today- it is so rare and exquisite because we hesitate to tune out the noise to feel that level of detail in our lives. I highly recommend it.

So how am I looking? Well, there is so much work to be done to truly get ready for a day out now. I have lost my hair, more than 80% of my eyebrows and lashes and of course my body has changed. I am thin like in high school and have these smaller permanent perky boobs that my plastic surgeon has not finished working on yet. Which means they change in size... It's like I'm an interchangeable doll. I have to contend with make-up namely eye-brows- something I never did before and lashes something I still fight now... and hair on a record breaking summer of triple digit heat. give me a dew rag and bare face and its all good for me. But apparently this is not good for my self esteem so I take the time do do the work and then the time to rest from it. 

I dont mean to sound negative on anything here. I have mourned the losses as they've come. The temporary ones, the possible ones, the friends and family who failed us, the time lost and my sense of security that my body wont betray me anymore. I have come to terms with all of it. Occasionally  I still shed a few tears but at least I know why. Its all been a part of deconstructing my old self.

I love that my chemo is working which is what the strange bald face looking back at me in the mirror signifies. I love that Dr. D is working on my chest and that no matter what, in the end I will end up with cancer free breasts. You'd think it would be a given that my size 0/2 body would give me joy automatically but I've grown to love it for the fresh start that it is to only feed myself and my family healthy beautiful foods...yes a fresh start.

So deconstruction has been brutal but necessary and unmercifully slow. I am almost to that point in a remodel when you stop making your house look worse and you can really begin to enjoy the process of putting it back in order, making things lovely again.

Thank you friends for always being here...

teddy bears and beans

It's going to be another hot day... We are in the midst of the dog days of summer here in Parkville. I keep thinking that I mourned all I could during the four months I've been swimming in cancer.

I continue to change physically my lashes are almost gone and my eyebrows are faint but still there.  I am expecting them to make their final exit in the next couple weeks. 

There are tough days when the sorrow for my old self overcomes me, it's only normal to spend a lifetime with one person staring back at you in the mirror and suddenly that face and body is so altered it could be someone else.  I was having a bit of a crying jag yesterday when I got into some old folders on the computer and saw me as a strong vibrant mother of three kids carrying jack in a kelty backpack and flanked by Joe and Soph we never missed a beat. I took them on many business trips we had some spectacular times. 

... Now, I haven't been able to lift jack onto his bed to give him a hug before bed since March. 

So I was having this pity party and resting my arm on Teddy which Jack so graciously loaned me until the cancer is gone. Teddy is jacks bear that he has had as his constant companion since he was four. Joe had Bruno the dog, Sophie had Tiny the bear, my brother had Moopie the rabbit and I had Neepee the kitty.

All loved and all retired now living in a leather suitcase in my closet. They all had their transformations during their lifetimes.  By the time they retired the were no longer fluffy and cute but like the velveteen rabbit they where real because they were loved.

I remember the night sophies Tiny which I always thought of as British became a tad tex-mex. Tiny was sophies bear, she had grabbed him out of a stack of good will junk to be picked up from a house we were looking at to buy, she was two at the time - her little hand went right around his belly, she never put him down.

 After a couple of years his arms developed a small leak.  He appeared to be stuffed with little white beads like potpourri balls. I promised her that I would repair him and he would feel better by morning.

I had no idea where to get these white balls, I wanted to make sure that he was the same for her. Then I realized he just needed to be soft.

Beans! I refilled him with beans and stitched him up.. With yellow thread.

Tiny had foreign filling and scars but there was never more love then Sophie when she saw him in the morning. She didn't care about the changes to his thread or his filling. Yes he was a little different and now had some scars but to my daughter his life had been saved.

I am having one of those years, although I hope they arent stuffing me with beans. I am morphing daily as I go through this journey. I lose some  they reattach some.

In the end- It will be me just with reinforced seams. My family will be able to love on me for a long time before I lovingly go into some big leather suitcase.

I made it to the summit!

I've been afflicted with awful side affects from chemo as most of you know. For the most part my full time job has  been to survive the treatment that is being given to save my life.  I take that seriously. While its it's  depressing at times to miss out on so much, the long term vision is to not miss out the rest of my life.

I am fortunate that the important loves of my life reside with me... all my other friends and family are welcome to visit me... I miss them - I don't judge that they haven't I am a constant reminder of their own mortality I guess. 

When I woke up this morning I thanked god that I have another day on his beautiful earth and moved Claire out of my way to take my first steps. I wondered if the mind numbing pain would be there when I stood up ... and no! legs ok. One by one I have checked my afflictions and I have officially turned the corner. I did it! I survived that shit that I have been taking! I am so happy I want to run through my field of daisies but they only exist in the painting tacked up on my wall, lovingly painted by Sophie. Surely painted on a day when she didn't know what to do to ease my suffering. Today I can enjoy it, not just escape to it.

I have more 12 weeks and the chemicals at least will be done. Radiation and the next step of reconstruction will round off the year...

But for today, for this moment and with my loves who have never left my side here online. I share this triumph with a tall glass of milk and Krispy Kreme donut. I feel nothing but gratitude and renewal for my life and my future as long or as short as its meant to be- I know I can climb the highest mountain and even when gasping for breath I can say without hesitation "Its a wonderful life, I'm glad I was here!"

Salud!

Diving off the high dive...

I always wanted to do a swan dive off the high dive.

My brother and I both have been strong swimmers since birth, we both swam on the swim team and ... Oh yes... HE would dive off of anything.  Every summer I would vow to myself that this would be the one I would do it- dive from the high dive. I would stand in the hot summer sun with copper tone surrounding me in the long line of kids waiting my turn. Each year I got a little less apprehensive about the height but still struggled when I was at the top with the idea of going head first. The pressure of the line of kids below, the knowledge of the pain of the water on my body every time I chickened out and jumped instead, unprepared I slammed my skinny tan body.

I could envision what I wanted my body to do but I never had the really believed enough to just dive head first arms outstretched into the coolness of the pool water.

Until today.... Kind of.

Today I walked into the infusion room at the cancer institute that is treating me and I took
that swan dive. I walked up each one of those wet concrete steps from my faded memory and
marked the last the of the first half of my chemo and from what I understand most toxic half.
It was a huge milestone! Unfortunately I won't feel the warmth of the edge of that pool for 6
or 7 days as even now I'm struggling to write because the headache and nausea. But I will make
it without a doubt.

Celebrate with me and do something you've always wanted but were afraid to. I may not have
been as graceful as in my minds eye but I went head first off a scary precipice and lived to
tell about it.

We all can do so much that seems impossible if we just believe in ourselves... I'm off to taxol for 12 weeks- I can do that too- bring it on!

Water

This was the toughest week so far. I can't say it will be the hardest, there are way too many treatments left.



It's Friday afternoon, I essentially lost 4 days fully conscience watching the clock waiting for the hell to pass. I can't even begin to explain it, somewhere between being poisoned and starved to death, writhing in pain in my spine, femurs, sternum and scull. Nausea nausea nausea. I could taste metal and chemicals on my tongue.



My family rotated in and out of the room some sitting with me trying to distract me with stories others sharing you tube videos... My little one watching cartoons with me. I felt like a corpse at times my eyes half open.



Dr B is on top of making me comfortable through this process but you can only do so much of that before there is not much you can do but wait it out in your bunker. Stronger meds means more side effects more side effects is what we are trying to combat...you get the picture.



By last nite I was weak from not eating, but understanding that this is my fight, this is my war and even on the longest darkest nite I can muster up more strength because I know I am still winning.



I am well enough today to get up and around the first floor, write a little bit and look back at the past few days with a strange fascination that "I did it"....



One more round of this brutal  Adriamycin/Cytoxan



I've got to restock my mental and spiritual supplies this week nearly wiped them out and due to the nature of this regimen the next one is expected to be the hardest.



Am I afraid? Hell yes! This is no picnic, it worries me when drinking water becomes a challenge. But I have my eye on the prize, more time on this beautiful earth with my kids, friends and furries. What better motivation could I have.



Tonight I will enjoy a simple thing that I had taken for granted before... a drink of water. Maybe we have to be dismantled to our most basic before we can truly feel blessed from the smallest gift life has to give us?

Nails

Nails

I had quite the melt down today. Bigger and badder than after my surgery or after days of pulling my hair out until there was none left and seeing myself bald for the first time.



I hit some sort of invisible brick wall emotionally, it was shocking and I felt battered and embarrassed by it as I steadied myself after it happened in front of my loved ones I nearly hyperventilated.



What happened to my nerves of steel?



Today I just couldn't contain myself and it was the least of my tragic moments thus far on my cancer journey. I noticed that my nails are turning black a few days ago but today I started to look at the nail beds under my nail polish and could see the darkness seeping through the candy apple red... As my heart started to race I also noticed my toe nails were sore and the whole thing overwhelmed me.



I'm losing my nails...



There was no preparing for this hit, this wasn't supposed to happen until the taxol in July... Now what will I have to sacrifice to the cancer when it finds out that there are no nails to take then?! I've given all that it's asked for so far without question like a blackmailer with big goods on me it comes and demands what it will and I given it without question. My flesh? Ok. My hair? Take it all. Any sense of well being? You got it. My nails... Wait... I promised those for later...



My life? No!! I still say no. I'm tougher than this. Even with all I given I'm am tough as nails.



Just not today...

Normal

Today I went to my second chemo today. My good friend Barb accompanied me and it was such a strange yet comforting feeling... A bizarre girls day out.

We walk in, I weigh in - I cringe, where normally I would take any piece of clothing off to make the number smaller I found myself doing the opposite today. Jean jacket on, shoes on, hell I would have kept the purse on my shoulder if I could have gotten away with it. Number smaller than I've seen it in 20 years. Cancer the best diet... who wants to market that one?

Next blood drawn from my cyborg port...

On to see the doctor, which I really like. You'd think I'd have a strong aversion to a man who routinely sticks me in the chest with poison but I not Dr B he is truly a healer and I thank God that I believe in him. 

He looks at my blood count and says, "the nuelasta shots are doing their job your numbers look normal. So far so good."

Barb from the corner says, "yay! You got a plaid lunchbox" I got a good belly laugh.

Plaid lunchbox?

When I was growing up I was the only child at school with long black curly hair and the only bilingual one. But I wanted to be blond with straight hair and carry a plaid lunch box. Obviously that was one thing that I could ask for so I did. My dad, always thinking that unique was best came home and handed me a pink vinyl lunch box that was oval and had a black poodle on it.  At the time I thought it was a major "fail"!  Of course we know how that story went... I grew up to be a risk taker and a strong woman in business and in my personal life so I thank him for teaching me to be proud of taking roads less followed - I have tried to pass that on to my kids.

But every now in then it sure is nice to get that plain lunch box I wanted.

I've got my nuelasta shot tomorrow and then probably bed bound until the weekend.  Thanks for keeping up with my journey on this daisy path! 

Oak trees and daisies

My feelings on getting breast cancer are so complex, they have been brewing since my own mom was diagnosed decades ago. Over the years as I was raised around this disease my outlook on faith, fate and future grew a bit crooked like a tender sapling without support. Talking was not something that was done, communication meant something very different then it does now.

When I was very young I lived life like there was no tomorrow because of having grown up around breast cancer and multiple recurrences... My number was next in my mind. Always knowing that I too would fall victim to this disease but unlike my mother I would not hang on straining an entire families resources only to end up breaking our hearts. In the end collectively we hurt and sobbed and yet could not will her breaths to keep them coming. Slowly they stopped and just as slowly we let go of that time which had been in suspended animation and walked into the world and tried to live our lives.

I kept her busy as my guardian angel tempting fate at every turn, after all I had already looked through the crystal ball of time and seen my death.

The years went on and my children came, with them my healthy life affirming attitude did to. I developed a natural fear of death for the first time... I had I purpose for my existence and I would not leave these gifts from God, so I made peace with with Him.

Life seems to have kicked me at every chance, good thing that I have had extra strong shins. But honestly I thought losing a husband and having a stroke was penance for anything I might yet owe. But we don't set the penance or the fines life charges... We just comply.

Well here I am betrayed by my body with a cancer I inherited before I was born. Yet I'm straining my brain to recall the moment when I earned it... I struggle because the images I have are of my moms experience which was so long ago and painful yet some are as if they happened yesterday. I can hear my father breaking the news of the first tumor my mom had to my brother and me when we where just small kids. Then the three of us kneeled by the window and prayed that the lumps in her body would go away. I prayed hard, closed my eyes and believed.

My dad always said that a sapling without support will grow crooked and may not be as strong. True. But dad this tree grew in spite of that. While my parents were waging war on cancer I blew in the wind and got twisted up in spots but my will to reach the sky was strong.

My will is stronger than ever...

And my kids? I have constant vigil on staking their still growing impressionable minds firmly to solid ground. This might be a short storm or a long one but they will be held down firmly. They will never sway unwatched...

This week is chemo free, my next treatment is one week from tomorrow. This process is cumulative so if last week kept me down for 6 days next time may be more brutal send prayers or good wishes - you know God turns them into daisies by the road...

Thank you for all the daisies so far, I hear they're coming up everywhere!

Daisies...

This day is the first of two important ones regarding my prognosis. I have an appointment with my breast surgeon this afternoon to discuss the final pathology report from the surgery. We got a pretty complete picture from the info I've already posted but it isn't complete. We will hear the rest today. Plus we get to ask questions on how I'm healing, pain management which has been a big issue and physical therapy for the arm whose nodes where removed. Currently mobility in that arm is a little less than shoulder height and then it feels like my nerves are sewn too tight to reach any higher. The vibrant purple and reds and blues of last week have given way to a more muted palette of greens, yellows and eggplant Across my chest... 

Yesterday I had the last of many scans order by my oncologist such as my abdomen, lungs, liver, pelvis and the grandaddy of torture the MUGA scan of the heart. Which is basically an ultra scan of the different chambers of my heart since one of the chemos I will be on may cause congestive heart failure... This gem of a test consisted of a tech pushing (hard) on my exact spot of the surgical area for an hour. I was so grateful to be done with that before passing out I just imagined fields of daisies... That's my happy place I go to when I can't bare what's happening.

I've been walking through lots and lots of fields of daisies lately.

Joes NYC trip was everything we hoped it would be for him, so glad he got to enjoy it with out much worry. I was able to see his last concert of the school year it was an effort but I didn't go to the daisies not even once... I was too busy being the proudest mom there listening to every note.

Sophie, my heart, buzzed her hair off last weekend. She looks gorgeous- seriously stunning. And her reason for doing it to support me makes it beautiful inside and out. I couldn't be more proud!

My tiny Jack was happy to have my drain tubes all removed so he can give me proper hugs again even if they have to be gentle. Poor guy, he is home today with a fever :(  I dread the chemo days when I won't be the one to take care of him if he gets sick because my immune system will be compromised. But today... I can still baby my baby the best I can!

It's my Aunt Lourdes' birthday today! She has come here to help us and has gotten up with me at all hours to give my husband a break Give me my 2 am pain meds, ice packs, cook for my small army and give us general cheer... As she never comes down to have her coffee without looking like a million bucks. I keep hoping this trait will rub off on me but it's still "basic and too big" is the style of the day for me.

And Kirk, what can I say about such a great partner, husband and truest friend I have ever had. He has seen me at my most vulnerable, allowed me to speak of my death when I needed to and that first 10 days helped bathe me, change my dressings, carried me, let me cry and let my darkest of wit be my sword against the pain. He knows the location of the field of daisies that I go to and like my most loyal soldier will always protect me when I am there because he knows he cannot protect me from what is happening to me here.

Oh and we can't forget mentioning that today is the anniversary of my father in laws miracle last year. It has been one year exactly since his heart stopped and first responders revived him and his wonderful medical staff where guided by a higher power to wake him up and let him come home to us! We shouldn't forget to say thank you for gifts given to us even if time has passed... Those count the most.

I'll let everyone know how today and Monday go. Hopeful there will be nothing but positive news!

Thank you all for everything you have shared with my family!

My mothers daughter

This morning I had my final appointment with my Plastic Surgeon before my surgery next Tuesday. His office is a bright place and I wish that my spirits were higher and i could enjoy the perkiness a bit more.

It was a pre-op meeting- the nurse gave me a handful of prescriptions for after i get home ( antibiotics, anti-nausea, pain, muscle relaxers), and went over wound care. I was trying to stay focused even though both my aunt and Kirk were there and I was sure that between my half mind their full attention and the oodles of handouts we could probably suture someone ourselves after that meeting.

But my mind kept wandering back to the year my mom was first diagnosed in the mid 70's. They didn't do the beautiful reconstruction surgeries directly after mastectomies that they do now. They surely didn't offer such surgeries let alone require by law that insurance cover them. Her mastectomy scars were diagonal and around 10 inches, one for each side. Back then they took everything, I mean e v e r y thing, down to  the ribs. Very barbaric and while I don't recall the series of tests leading to her surgery I do know the times where sorely lacking in diagnostic tools. With the first breast she was told that they would biopsy the tumor while
she was under and if it was benign she would have a handful of stitches if not radical
mastectomy. It would be the first of 10 long hard fought years against a recurring beast in
her body that finally took her my 17th year...

My wandering mind was well concealed I think no one noticed.  Soon it was time to leave and it was only until I was trying to buy supplies at Walgreens and couldn't remember anything that
it became apparent to me how long  I had checked out to relive the beginning of what is now my own nightmare.

I am the daughter and also the grand daughter of breast cancer victims. My grandmother died a
painful death without hope, my mother a long marathon fight and tried everything. I
will not let their valiant efforts be in vain or the many, many others who have suffered from
this horrible disease since then.

These are my thoughts today on the women that had the early surgergies and experienced chemo in its infancy and they will continue to be what moves my arms and legs to do what needs to be done each and every scary step though this...  

Nightmare or reality?

Yesterdays appointment with my oncologist was like a nightmare that is so real that the line between reality and dreaming is blurred.

It was my first meeting with this doctor and fortunately he was everything that i would want in this situation; caring and patient and he gave off an aura of knowledge. Perhaps it was his thick white hair or the way he took the time to draw a rudimentary graph on how my treatment is supposed to work that reminded me of my fathers patience with me when I began to look puzzled at his explanation. In any case I kept it together, I took notes and eventually headed back to my car with confidence in this man and swimming in information.

He talked about the sub-type of cancer that i have- triple negative. This is and will continue being the biggest fear factor of my oddessy. I have read numerous articles much information on this and felt well prepared for this meeting. Yet I was floating above myself watching as he spoke
to me and I fiddled with the corners of my shirt. He said 40 to 50% recurrence rate... Lungs... Bones... Spine... and my ears started to ring I felt nauseated for a moment like I might pass out. It wasn't that I hadnt seen those numbers before but I was listening to them being spoken to me for the first time. It was a bit shocking to say the least and it sucked all of the oxygen out of the room.

Depending on my recovery from surgery my first chemo should be mid May. I will be doing 8 weeks of dose dense which means less recovery for the cancer to grow between treatments and unfortunately less recovery for my body too. This, followed by 12 weeks of a more standard dosing regimen. I have 20 weeks to slay this monster within me.

I scarcely remember the two hours following the appointment. I can tell you that if you allow it your mind it will grab ahold of you and rape your spirit like a stranger in an alley. The next thing I knew I was laying in bed thinking of my funeral. Wow. Never again! I will stay in well lit areas or with someone at vulnerable times like that.

Cancer has my body held hostage at the moment I AM NOT HANDING OVER MY SPIRIT TOO.

Fighting for a passing grade

I was really looking forward to a beautiful spring in our new house, a trip to New York for our first anniversary and then summer with the kids by the pool...Then on March 7th, 2011 I woke up early and something told me that there was a reason to check my breast, I didn't have any pain- I had just had my yearly exam a month earlier but it's like someone whispered in my ear "check it." I did, and promptly woke Kirk up. There was a lump the size of a cherry in my left breast! So undeniable, so startling that even my tough husband had a tear in his eye in the soft light of dawn. We knew. I called my doctor that day.

On March 21 we received the call that would confirm our darkest fears. I had been diagnosed with Invasive Ductal Carcinoma, it is a grade II and triple negative for hormone receptors. I will need double mastectomy and have decided to have immediate reconstruction so I will be in the operating room roughly 6 hours.

Many tears later, many silent moments and sleepless nights- weeks have gone by and we have by necessity have been thrown into a sort of information overload as if our final thesis is due an yet we had never heard of the material before.

Kirk and I had a very poignant talk about what what "fighting against cancer" looks like.

It's not always positive cheerleader behavior. No, more often than not it's quiet tears of pain or fear but sure from your gut resolve telling any number of health professionals that they may proceed with a test or a procedure in spite of the discomforts or scars. It's knowing that what you are agreeing to will change you but may very well save you, that to me is fighting for your life. So without fanfare, without a pink boa around my neck (although I may get one!) I spent the morning making many calls to my now growing number of doctors.

My new surgery date is April 19th

I have my first oncology appt is this Fri which is now more important than ever since the type of cancer (triple negative) is less common, more aggressive, not treatable with hormone medications and has twice the recurrence rate as other types. They have to hit it with the nastiest chemo... And that's where this conversation started. I have been profoundly sad because of this latest news...
so my husband seeing me so beaten down said," we are just getting started you have to fight"

I am fighting! even though sometimes it will be sadly it will be boldly too! maybe quietly but in my heart I am roaring with my will to survive this. I have no doubt that while I have been given not only cancer but a particularly challenging one...It has no idea who it's up against.

Plan a-z...

Plan A-Z came unexpectedly, improvised when I needed something to help the kids make sense of things beyond their control.
 
When Joe and Sophie were very little and I was going through divorce my kids had a tough time with my ex's inability to follow through or keep promises. There were missed visitations and missed calls and the kids needed help coping.  On their fathers birthday they dressed up and had cards for him.  He never showed up. He flew to Las Vegas with his new girlfriend.  I was heartbroken for my 6 and 7 year old children who could not wrap their minds or hearts around such a thing.  I found myself scrambling to ease this for them….that is the day Plan A through Z was born.

 I explained Plan A-Z like this:

The best thing to do in life is to have several plans made, in the order you will try them but to avoid disappointment….remember one is not better than the other they are just different from each other.

 The kids adapted to this way of thinking and it eased them right away…my children saw the whole world and every activity as a plan a-z opportunity.

I needed that more than they did but didn't know it at that moment. I grew up thinking there was a right way and a wrong way.  Every time I fell short of the plan I made for myself I knew that I'd missed the mark and therefore I had failed.

Most of us live that way, and when we do make contingent plans we view them as sublevel to the original so failure is what we feel. We live with a lot of disappointment this way.


A couple of years ago I was struggling with an aspect of my life that caused me great frustration.  I remember crying  in my room when my oldest son came in and found me upset and sitting alone.  I always tried not to let them see me meltdown because it might frighten them.  But it was too late he came in and sat next to me and said "mom, I think you have to let go of plan A and go on to Plan B.

It was so clear. I had been teaching my kids about that for years but had never really lived it myself. But soon I realized that it was a way of life, a way to teach stress management to them, a way to keep their mind open.


We spend too much time entrenched in our original vision of what life should be.  What we will be, who we will marry, if we will have kids, and what age all of those things will happen….we're programmed to think in that scarcity mentality. Have you ever noticed how 'disappointed' someone gets if a movie is sold out?

Who knew that as my life went on I would come to need this theory of Plan A through Z to survive!  A few short years later I was widowed as well as had a subsequent stroke that left me unable to work.  I had been so blessed with success in my career and found true peace in moving on to plan B.  I don't look back and mourn  I look forward and rally for the next opportunity in line.  I'll tell you a secret, I may omit plan A from now on it just doesn't have much staying power. How would you ever know the beauty of Plan D or G or I if you got stuck on A?


Yesterday I woke up to a severe migraine- the kind that makes you unable to sit upright and causes you to puke  unceremoniously every time you even smell coffee.  Yes it was my birthday and although it was pretty crummy to feel so ill I was not going to die - it would pass in a few hours and I wasn't saddened by it 'ruining my day'

I received many well wishes from my friends and a family that I have been so fortunate in finding once again! I'm pretty damn lucky with living in such a spectacular house with kids who are clean and sober and doing well in school.   Life is so good, why would I be bummed about a migraine on my birthday? Plan A didn't work out will move on to B. I am pleased with the clarity in my life, the people here to share it with and the chance to enjoy the time with them.

 I am older yes but newly born into a better life. Today I am 1 and I have the whole rest of my life to look forward to... and although my birthday was yesterday - its just as special today to read your kind words and not to have my headache.