Mele Kalikimaka

Normally, I post on Christmas Eve after all the preparations for the arrival of our Saviour (and Santa) have been completed and the house has quieted down and I can contemplate the blessings that have been bestowed upon me in the year just passed. However, this year I plan to be spending Christmas Eve enjoying a pina colada under a swaying palm tree by a gorgeous ocean surrounded by most of my equally festively-inclined family. Yep - we're going to Hawaii for Christmas. Don't get me wrong - I still plan on contemplating all those blessings. I'm just going to be doing it in 80 degree temperatures and with tropical drinks!

To say that this has been a difficult year is quite the understatement. I am torn between wanting 2011 to end so badly and yet fearing that 2012 will bring worse. The loss of Bonnie, of Ken, of Gubby, of Uncle Eddy and the realization that my cancer continues to progress took a bit of a toll on my ability to stay positive, to feel optimistic, to want to keep fighting. But then I have a moment when I sit and giggle with Taryn ("Kill, Bang, Marry!"); when Addison dances to "Moves Like Jagger;" when I help Ian choose a gift for his girlfriend; when Warren shouts at the TV during a football game (which he does for my sake - we all know he's not a sports nut); when Emily asks my advice on a work issue; when Bruce makes an unfunny joke that just cracks him up; when Lisa and the boys decide to come to Hawaii with us; when life just keeps happening and happening and happening, well, then really...what's not to feel good about?

We are going to Hawaii both as a chance to celebrate the season and also as a tribute to those that left us this year. My mother, Ken, and Gubby all loved to travel and it seemed fitting to finally take the trip we (Lisa and I) have been talking about for years rather than postponing it one more time. Because when you get right down to it, it's today that matters, it's family that matters, it's faith that matters. Hawaii, for us, is the embodiment of all of that this year.

So Christmas Eve may be happening in a different place for us this year but the reasons we celebrate it won't be different. We will be grateful for the birth of God's only Son. We will eagerly anticipate Christmas morning and the opening of presents. We will enjoy a hearty meal together (pigs and pineapple - yum!). We will share stories and memories and hugs and laughter and tears and joy with those that matter most to us. We will remember those we will always love and hold close in our hearts. And you damn well better believe we will do all of this with our hands firmly around our Bikini Martinis!!

Merry Christmas - Mele Kalikimaka - Blessings and Love to All.

Let's Live For Today

I have done a good job (I think) of staying focused on the present, on enjoying each day as it comes, on not letting the awful truth of my prognosis interfere with my ability to appreciate all I am blessed with, on reminding myself of all that I have been privileged to experience since my diagnosis 17 years ago, on still making plans - even though I know they may change. Now if I can only get everyone else to do the same.

On Thanksgiving, my brother Bruce had an awful breakdown, sobbing uncontrollably in the kitchen while I held him and tried to comfort him. "You have no idea," he kept saying, "how much you mean to me." I could hear the pleading in his voice, the unsaid "Don't leave me," the anguish felt by a man who has already lost one sister, the one NOT his favorite. "I think about it all the time," he cries and I know the "it" is my cancer, my unforgiving and unstoppable cancer that leads to only one destination, one my brother desperately wishes wasn't happening. I try to remind him that there is no telling what kind of time I have left - I have already beaten so many odds that anything may be possible. I urge him to appreciate the time that IS left so that we don't waste time grieving before it is actually time to grieve. I tell him that, at least most of the time, I am happy and at peace and that I'd like him to be too. I hug him tightly and tell him I love him and I ask him to please, please not be sad. At least not right now.

Warren, poor Warren, with whom I just cannot discuss my disease because he's my sanctuary from all that reality, he is lost when it comes to dealing with me because my mood changes constantly depending on my emotions at the moment. As we were putting out our Christmas dishes, he commented that we should increase our service for 8 to a service for 12 so that we can leave each of the kids a set. My reaction - he's already divvying up my stuff and I'm not even dead yet (yeah, yeah, technically it's "our" stuff but really, as the wife, it's all mine right)? I know that's not what he meant. I also know that in part (subconsciously at least) it is what he meant.

And as the other day Taryn watched me dance around the house to "The Little Drummer Boy" (although truth be told, "dance" is a strong word for the weirdly awkward combination of ballet and modern dance that constituted my movements), tears formed in her eyes and even though we didn't talk about it I know she was thinking of a time when she will never see me dance again.

Oh how I wish I could magically erase the fact that I have cancer from their minds. Because I don't know the right words to say it's OK to live, live, live and joyfully so. I don't know how to convince those I love that living for today doesn't mean ignoring the harsh reality of tomorrow - after all, I am guilty sometimes of shoving that tomorrow in their faces. It just means letting go of what tomorrow means when that reality inevitably intrudes so that we never lose sight of the blessings of today.

My brother was crying - but I still got to hug him. My husband was insensitive - but I love him no less. My daughter was tearful - but still got to see me smile. Awesome gifts all. Please - everyone - live for today.

Blessings and Love to All.

Thank You

For Taryn, who lights up my life so brilliantly that even the sun can't compete. For Warren, who continues to patiently tolerate my failings as a wife. For Emily, who makes me proud every day of her strength and perserverance. For Ian, whose humor continues to bring laughter into my life. For Addison, who revives me at the end of the day with her winning smile.

For Bruce, who reminds me daily of what "family" is all about - love and loyalty. For Chris, whose friendship extends far beyond our mutual parenthood. For Lisa, who is my rock (and my roll). For Dave, who loved my sister so. For the family lost to me this year - Bonnie, Ken, Gubby - whose memories keep them alive in my heart. For the family that remains - aunts, uncles, cousins - who continue to celebrate milestones and birthdays, weddings and graduations, christenings and anniversaries.

For my in-laws, who continually find ways to demonstrate their love for me. For my friends, who make me forget the trying times. For my neighbors, who never tire of showing their support for me and each other. For my co-workers, who inspire me daily to conduct myself with integrity. For my congregation, who help me to hold onto my faith when all seems lost.

For this beautiful life filled with love and laughter and grief and tears and grace and compassion and loss and horror and courage and inspiration and sickness and fear and joy and achievement and every one of you as part of it to make it a priceless gift.

For all of this - I thank you God.

Blessings and Love to All.

Cheers (Drink To That)

In a year of many sucky things...there is still this. Fabulous friends that make me forget my troubles and remind me of my good fortune. I'll drink to that! (oh wait, I guess I already did).

And now for something completely different - the saga of the missing medication:

My chemo drugs come from a specialty pharmacy and when my company changed insurance plans, I needed to go through a different pharmacy. The new pharmacy contacted me on a Monday to tell me that they had received the prescription the previous Friday and were working on determining what, if any, Rx benefits I had with the new plan. On Tuesday, they called to tell me that I had not reached my "new" deductible and needed to pay full price for my drugs - $2,200 + for the 2 week supply. Gulp! And...cue the tears of frustration (which did dissipate later on when I was reimbursed for the cost). Nevertheless, I paid up and was told they would be mailed out on Tuesday. I reminded them that I HAD to have the drugs by Wednesday as that is when the new cycle was to start. They "understood." No meds Wednesday. No meds Thursday. I called them Thursday and was told that there was no evidence in the system that the shipment had been set up - but yes, yes it shows that I paid! They would be happy to set it up for me - to be shipped Monday, a full 10 days after they first received the prescription. Did I mention that the old pharmacy had the meds in my hands within 24 hours? Well - I let 'em have it ("Do you people want me TO DIE? This is CANCER medication I need to LIVE!!!") loud and long and with a generous helping of sarcasm. After "consulting" with the pharmacist, the customer service person advised that they would be sending out the medication that evening. No meds Friday. No meds Saturday or Sunday or Monday. Today is Tuesday. No meds. I am now one week past when I should have been beginning my 3rd cycle. Fortunately, I had a scheduled appointment with my oncologist yesterday, who assured me I would be OK starting the next cycle this late and who arranged for some emergency meds (since it is unclear as to whether I will EVER get that prescription filled). The pharmacy's name is Accredo. They are the worst I have ever dealt with in my life. I can't wait to inform any regulatory agency that will listen about the unconscionable way they handled this matter.

Is it any wonder I needed a drink this week?

A shout out to the many folks who helped me deal with this ridiculous incident, including Thea, my mother hen; Patti, the witness to my extended diatribe on Thursday; and Little Jenn, the world's most compassionate and capable dental hygienist (c'mon whose hygienist tracks down within hours all the information needed to seek reimbursement from the drug manufacturer?). Cheers to them.

Blessings and Love to All.

Bittersweet Symphony

A surgical procedure, a wake, a funeral, a baptism, and a football game. Three days of highs and lows, of tears and laughter, of anxiety and relief. So how was YOUR weekend?

My beloved uncle Gubby passed away early in the morning on the 15th of October. I delivered the sad news to his daughter Lisa (aka my cousin and best friend), each of us mourning and comforting each other at the same time. Despite what we knew was a serious illness, I don't think any of us expected so quick a demise (well, MJ did but our hopefulness outweighed her expertise when it came right down to it). Lisa and Mike (her brother) flew in to make arrangements, get Gubby's affairs in order, pack up his apartment, and finally to join with our family and friends in saying good-bye and sharing our memories (good and bad) of a man who lived life on his own terms and was so damn meticulous and organized about his finances that he actually wrote the words "Titty bar" in his check register when he withdrew money for - *ahem* - a night out on the town. We reminisced about his love of women, wine, sports and song; we giggled over pictures like the one above (no mere coincidence, we think, that his nickname was "Bud"); we cried unexpectedly at some photo or memory that came upon us unbidden; we prayed together at his grave site. It was not all sad - my cousins, my brother, Warren and I will likely smile inwardly when we hear words like "Carvel" "penis" and "M-crib" (inside jokes all) and we will be able to say that we made the most of our time together despite the sad circumstances of our coming together. And it was our wonderful and amazing friend Patti who made it possible for us to do so, putting together and setting up a post-funeral feast at my house that allowed us to relax, unwind, and focus on each other. She is nothing short of an angel.

And just a day after the funeral - a joyful christening of my granddaughter Addison, whose mother Emily chose well when she asked Taryn and Ian to be her godparents. Addison was a trouper, sleeping through Pastor's pouring the water over her head at the baptismal font and making nary a peep as he escorted her up and down the church aisle so that all could view God's newest child. I am confident that all those family whom we have lost in the past year (too many!) and years gone by were keeping watch over the proceedings, perhaps even making their presence known in our hearts.

What's a Sunday without a football game? Put together 2 Chargers fans (Lisa and Mike, both raised in San Diego) with a houseful of Jets fans, add in lots of delicious leftovers, mix it with an exciting comeback effort on the part of the Jets and you have the makings of a raucous but relaxing afternoon. My uncle, the consummate sports fan, would have absolutely loved it.

And finally - a deep, deep sigh of relief on my part and on Chris's part. On Friday, Taryn underwent a core needle biopsy of her breast because of a lump that was found late last year. The results came back yesterday and she is fine. I have kept this torturous secret not so much because I expected that they would find cancer (I was 99.99% sure that they wouldn't, despite my history), but because the thought of my 20-year-old daughter having to even CONSIDER the possibility of cancer, the thought of her undergoing this type of procedure at such a young age, the thought that in a worst case scenario that I might not be able to help her heal, the thought that it is I who have brought even the idea of this scourge into her life, just devastated me to the point where I could not even talk about it. Just the remote possibility of breast cancer touching her life horrified me; I needed to share my roiling emotions, my tears of terror, my guilt and my sorrow with only a few close friends and family. It is not over - she will have to be vigilant her whole life (as she was this time, coming to me immediately and doing all the doctor visits and tests that she was told to do). But for now, we take a deep breath and rejoice in the good news.

And so goes the bitter and the sweet. I'm sure my family will gladly join me in saying "Hey 2011! Enough is enough already!"

Blessings and Love to All.

Count On Me

Here we go, dear readers - let the countdowns begin.

I have just completed round one of my chemotherapy; round two began Wednesday. Each day ends with me saying something along the lines of "2 days down, 12 to go until I'm off the pills again." And - surprise, surprise! - 14 days of pills goes REEEAAALLY slowly, while 7 days of no medication just flies by. I'm counting pills, counting days, counting side effects, counting weeks until my next appointment, counting the number of courses until follow up scans are scheduled. And to make matters worse - I am now counting dollars. More on that later.

Let's start with side effects - they continue to be present, but (relatively) mild. I would say that most of the time I have the energy and interest to do not only what needs to be done, but what I would like to do as well. I did, after all, buy myself 2 new pairs of shoes yesterday (and will likely catch hell - deservedly so - from my sweet cousin Susan for NOT getting them at her store). I'm all too aware of the cumulative effects of chemo, so for now I'll just be glad that it's not very debilitating. It does, however, suck that chocolate doesn't taste quite as good as it does when I'm not on chemo. You are indeed a cruel master!

I saw my oncologist yesterday, who sees no need to do follow up scans until 4 or maybe 5 courses of treatment are completed. That would bring us to late December, early January. So it looks like he thinks I'll be alive until at least then (haha)! A brief reprieve, perhaps, from further bad news? Or a torturous wait for good news? I just love the unpredictability of this disease (she said sarcastically)!

Over the 17 years that I've been dealing with this disease, the one thing I never really worried about was how to pay for the enormous costs associated with keeping the devil at bay. I had wonderful insurance that, while it didn't pay for everything (I'm still slowly paying off some of the bills from the jaw reconstruction), did cover a significant portion of the expenses. It was the one thing I didn't have to stress about. No more. My company switched to an awful health insurance plan that not only imposes onerous payment responsibilities on its employees, but also does not include ANY of the doctors or hospitals I currently use to manage my disease. And although there is a "transitional care" option, it's only good for 60 days (and that's if approved, not a given even under these circumstances). I'm pretty sure I'm going to need care beyond that time. I know that I'll figure out a way to deal with this (I bet crying will help, that gets the docs every time), and I'm hopeful my company will do what they say they are going to do and come out with some better plan options in December. It's just disheartening to suddenly have this burden added on top of everything else. I know God doesn't give us more than we can handle, but c'mon man!

And yes, there is yet one more burden, although this one I've at least got a lot of support on. My uncle has end-stage COPD/emphysema and is in the hospital right now, trying to figure out where his health is going to go from here. Talk about unpredictable diseases - one day he is told to get a hold of hospice 'cause the end is near, the next day I'm speaking with a social worker who wants to discuss a plan to get him back home. So almost-daily visits to the hospital have helped to wear me down a little but Warren and Bruce and Lisa have all stepped up to try and both ease his anxiety about his prognosis and to also provide him with the comfort of a loving family. It is a difficult deterioration to watch, and we are all hopeful that he can rally and be with us for awhile longer. 2011 already sucks enough.

I would be quite appreciative if you all could say a prayer for the safe journey (all 39.3 miles) of MJ, Jill, and NYBlueforPink during the Avon Walk for Breast Cancer this weekend. Such an inspirational group of women; such strong and committed fighters; such amazing friends. God Bless you all.

In my prayers and I hope in yours as well: Annie, Gubby, Amanda.

Blessings and Love to All.

Dirty Work

The work of undergoing chemotherapy treatment is unpleasant to say the least. After 2 weeks of pill-popping I find myself mourning the loss of energy and well-being that I enjoyed while on the hormone treatments. Creeping in on little cat feet (like the Sandburg poem) is fatigue and melancholy and queasiness and agitation. I don't know what I will gain by giving up my well-self for this unpredictable existence of "good days" and "bad days." I do know that I am moved to tears of self-pity and loss when I am lying in bed, weak and unable to do much more than flop around seeking a comfortable position, wishing for sleep to take away my sadness, as I was last night.

Like childbirth (another messy but necessary job), I forgot what it would be like and so when the should-have-been-expected side effects started I was taken just a little bit by surprise. So soon, I thought? What about my grace period? Not that it has been completely debilitating so far - I go to work, I have my Grammie time with Addison, I'm going to see Taryn in Maryland this weekend, I fervently root for the Yankees. But I start to wonder - what will I have to give up in the coming months? What will I plan on doing - and then have to unplan? Who will I fail by not being there?

I feel like I am closing in on losing this fight. But is that the chemo talking? Or is that reality finally finishing digging its trench into my brain? How do I talk/write about this out loud without scaring the daylights out of those of you still committed to reading about my journey. I imagine that for some of you, you open up this blog now with fear and trepidation that the latest post title will read "The End." (It won't, by the way. Keep guessing.) It may well be that I don't have many readers left; it's exhausting following my story I think. I know I'm tired.

Fear not, there are still plenty of smiles, the latest of which came in the form of red velvet cupcakes (see above) from my dear friend and neighbor Sandra. I am particularly touched by this exquisitely scrumptious gift because I know the hard work involved and the mess that is made when baking these (as Warren put it - your kitchen looks like a crime scene afterwords, with red dust and paste all over everything). My night last night was difficult - my morning was sunny. Thank you Sandra!

Blessings and Love to All.

Get Together

Three pills in the morning, three pills at night for 14 days, then 7 days off. This is my new chemotherapy regimen, started this morning. I will wait and watch to see what side effects present themselves; I will wait and hope that the scans a few months from now show a disease at bay.

Before deciding on my current treatment, I was faced with having to make a choice whether or not to do a clinical trial with one of two experimental drugs. I reached out to several of you seeking your thoughts, advice, concerns, and recommendations and you responded with a heartfelt but measured analysis. I will never be able to thank you enough for taking on the difficult task of evaluating this opportunity along with me for I know it forced you to confront some undesirable realities. Together you made my decision easier and I am grateful for your guidance. My heros - you know who you are.

Life continues. An amazing group of people gathered in Central Park on September 10th to honor our fallen hero, firefighter Vinnie Kane, who ten years later continues to inspire us all to be better people. When I start to feel sorry for myself I think of Vinnie and remember that I am not so unfortunate after all. I spent last weekend doing all the things with Taryn that I love to do, grateful for the time we have today. And I look forward to celebrating Warren's birthday Friday and a weekend of fun with Lynne, Dom and Laura.

I enjoy my solitude; sometimes I need it - desperately. But a coming together of reliable friends; of kindred souls; of a mother and daughter; of a family; is truly something to be cherished.

Blessings and Love to All.

Take Me In Your Arms

She woke me at 1:00 in the morning and asked me to come into her room. She sat on her bed and, lip quivering and voice shaking, said "Mommy, I just read your blog." So caught off guard was I that the only thing I could say was, "Why?"

Later, after we had talked a bit, we turned out the light and lie down on her little twin bed, her back to me, my arms tightly around her, stroking her hair, brushing away her tears, and sharing in the sadness of that which is soon to be lost. At one point she had trouble breathing and I held her tightly against me and told her "Breathe with me. Follow my breath." Four or five deep yoga breaths later she was calmer. Still sad, still terrified - but calmer.

Who will take care of me, she asks, I don't know how to do anything! (And of course, she knows way more of how to make her way in the world than she realizes) Who will I talk to, she sobs, when I feel like this? (I lose track of all the names I mention that love her and will be there for her) You will be with Grandma and Auntie Bon and GranJulie and Grandpa and I will be all alone, she says sadly. (I tell her that I will ALWAYS be with her, watching over her, and I will not miss a thing in her life) Isn't there any hope that you will be cured, she begs? (There is always hope, I state carefully, but more than likely this disease will take my life sooner than we both want) I am devastated to be having this conversation with my daughter, but I don't hold back from the truths that exist at this moment about the progression of my disease. I make only the promises that I can keep.

An hour later, we are both physically and emotionally exhausted and ready to succumb to the sleep that has eluded us to this point. She turns in bed to look at me and holds my hand and asks hesitatingly, "Do you think things happen for a reason?" I do not immediately respond, thinking that I want to be truthful with her, I want to communicate what it is I really feel on this subject. It is not a question I was expecting, not one I have chosen to give a great deal of thought to, not one that allows for an easy yes or no answer despite its form. And although I start out having trouble saying what it is I want to say to her, I do, eventually, answer her. She sighs lightly, satisfied, and I know she is ready to stop talking.


Blessings and Love to All.

Here I Go Again

You know what? I really hate being unceremoniously jerked out of my blissful state of denial. Thank you Dr. Cohen for getting back to me with those lousy PET scan results SO QUICKLY! (Do I detect a little sarcasm in there? Yes, I do!).

Yes, I must once again face the fact that this cancer is unstoppable. I had my follow up scan done just this morning and a mere six hours later my oncologist informs me that the latest hormone medication is not working and it's time to move on to chemotherapy. The tumors that already existed are growing; new tumors have sprouted in both the bones and the lymph nodes. Time for a new strategy, designed not to cure me but to extend my life. Maybe.

What's funny is that to a certain degree the results aren't a surprise. When my medications were switched 4 1/2 months ago I don't think I had any expectation they would work, so I'm less shocked than annoyed. Annoyed that no matter what I do, no matter what protocol or medication or biopsy or clinical trial this bitch is not going to go away. Annoyed that every twinge in my body has me wondering if it's the beginning of the final deterioration of my health. Annoyed that God is picking off my family members, me included, one by one. Annoyed that I still have to go to work every day when I would rather spend the precious time I have left with my family. Annoyed that no matter how much I try to "Be Here Now" I can't escape thinking about what I will miss when I'm gone. Annoyed that I will have to deal with everyone else's denial ("Oh, you're not going anywhere for a long time!" they chirp and I nod my head and agree because I don't have it in me to shove my mortality in their faces). Annoyed that I'm so tired of all this that I can't even cry.

But of course I must fight. It is what we cancer people do, until we can fight no more. And so I will see my oncologist, and plan a strategy, and endure another biopsy, and ponder enrollment in a clinical trial, and poison my body, and wait for the next set of scans to tell me the same thing this set has told me - that fighting is futile.

I AM sorry for all the negativity - but you all know that is typically a temporary state for me anyhow. Despite the above, I rarely lose complete sight of all my blessings. Yes, I DID have a fabulous visit to Seattle with my cousins Lisa and Bud and their families, showing the sights of my favorite city to Taryn, re-connecting with my college friend Laurie (my Glimmer Twin!), even attending a Mariners game (yeah, yeah, so what they lost...it was fun!). Yes, I DID celebrate my 9th wedding anniversary with Warren. And yes I WILL continue to plan and celebrate and vacation and enjoy this life. For as long as this tumor-ridden body will let me.

Blessings and Love to All.

Hey Baby

Meet my new granddaughter, Addison Jane Tabolt! She was born to my stepdaughter Emily and is already a week old, having been born on July 5th at 5:06 p.m. and weighing 7 lbs. 6 oz. Addison (she is most definitely NOT an "Addie!") has possibly the most expressive face I've seen in an infant this tiny, pursing her lips, raising an eyebrow, wrinkling her nose, all seemingly at will (even though we know it's not). She has a head of dark hair (Emily says that explains her heartburn over the last several months), perfect little fingers and toes, and inky blue eyes. Addison has already captured the hearts of her Aunt Taryn, Uncle Ian, GrammaLee (that's me!) and Gramps (Warren) and has even inspired several nicknames already ("Squink" from me and "Little Honey" from Taryn). We think we'll keep her.

Addison took about 14 hours to come into this world once Emily went into labor so yes, we awoke at 3 a.m. to begin this journey! It was definitely a team effort - I helped her through her toughest contractions, Warren made sure Emily's mother (Leslie, who drove down from Utica) stayed calm and relatively sane, and Taryn was in the delivery room to support Emily AND cut the umbilical cord. Two days later we took Emily and Addison home.

What mixed feelings have arisen as a result of this. On the one hand, I was thrilled to be able to be there for Emily, to see and hold my granddaughter, to share this experience with Warren, to see Taryn be a source of strength for her sister. On the other hand, I can't help but feel sad that in all likelihood it will not be me who comforts Taryn when the pain of labor becomes unbearable, and it will not be me who looks into her child's eyes and remembers my own joy at becoming a mother, it will not be me who tells Taryn afterwards what an amazing job she did. Instead of only the wonderful, Addison's birth brings the bittersweet.

And yet, I would not wish it otherwise, for when I hold her and caress her precious cheek and rock her tiny body into sleepiness and gaze into those already inscrutable eyes I am inevitably reminded of all the blessings I have had, do have, and will continue to have as long as my body and spirit are able. Welcome to the world Addison!

Blessings and Love to All.

Where'd You Go

Nowhere - I'm right here! My apologies for not updating so regularly lately, I've had quite a few folks e-mail me or call wondering where I've been. Never fear - as Monty Python would say (insert British accent here)"What! I'm not dead yet!"

It has just been a really busy 6 weeks and about to get a lot busier once Emily has her baby (due date: July 5th. My money is on the 29th of June). Since I last posted I've had a visit with my oncologist (all good - well, insofar as no physical changes evident can be considered all good); celebrated my 52nd birthday (I know! I don't look a day over 51!); taken on additional responsibilites at work (translation: longer hours); welcomed Taryn and Ian home from college; sent Ian BACK to Delaware to take a summer class; celebrated Emily's college graduation (summa cum laude by the way AND she rocked a 4.0 her last semester); attended a neighborhood baby shower for Emily (thanks to MJ for hosting); traveled to Saratoga for the wedding of the beautiful and amazing Erin Tabolt to the awesome Vince Martyn (and had my dancing shoes on all night); planned (along with her wonderful roommates Selma, Jonia, Tiji, Sumi and Cat) and held Emily's NYC baby shower; and - sadly, sadly - buried my stepfather Ken, who finally succumbed to the liver cancer he had been battling since last July.

So soon after the death of my sister, it was difficult to go through another wake and funeral. Ken had been part of my life for almost 30 years. He was the only "father" I had ever really known. And oh, how he loved my mother! I remember the two of them dancing to "Wake Me Up Before You Go-Go" in that local neighborhood bar around the corner from the first house they lived in in San Remo. I'd stop by their home if I didn't have work or classes (I was going to Stony Brook at the time), we'd take a walk to the pub (if it can even be called that - it was a kind of converted house on a residential block and definitely questionably legal), order a few cocktails, the jukebox would start playing and they'd be off and dancing. In later years, the two of them would go canoeing down (up?) the Nissequogue River with my sister, or traveling to one of the many places my mother had yearned to visit (Ireland was a favorite). After she died, we were so grateful that Ken remained connected to our family and thrilled that in the last year or so he found love again with Dee, who uncomplainingly cared for him throughout his illness and dying. I'd like to think that the three of them - Mommy, Ken and Bonnie - are once again enjoying good times together in Heaven (along with Aunt Pat and Uncle Joey - they're not ones to miss a party!).

One by one, they go away, some as expected, some unexpectedly. Taryn sadly pointed out how empty our Thanksgiving table will be this year, and I know she is scared that someday I will be the one to go away. But not today dear family and dear friends. Not today. Today I am right here.

Blessings and Love to All.

Bargain

I remember thinking 16 ½ years ago, “Dear God, just let me get 5 more years out of this life so that Taryn will remember a little bit of who I was.” I remember thinking 6 ½ years ago, “Dear God, just let me get 4 more years out of this life so that I can see my daughter graduate high school.” I remember thinking 3 years ago, “Dear God, just let me get through another 3 years before having to deal with another recurrence.” I remember thinking last year, “Dear God, just let me get through to the middle of 2011 without any more tumors popping up.” Just yesterday, in the shower, I remember thinking, “Dear God, let me just have another 4 months before having to deal with any more disease progression.” And I realized that my bargaining focus has gotten narrower and narrower as my negotiation tactics appear not to have made the kind of impact I had hoped. I am constantly redefining success (yay, no major organ involvement yet!) in order to keep feeling positive (hey, who doesn’t want to be “#winning?”).

And you thought this post was going to be about shopping! (OK, well knowing me, it was a good guess)

I started this particular journey as a young 35-year-old woman and there are certainly times when I feel like I’ve gotten a “raw deal,” when I feel like I’ve been “gypped,” when I wish I could exchange this existence for another less tiring one. Long gone are the times when I could go days, weeks, months without thinking about cancer. Every day. I think about it every day. I’m not sad every day, I’m not worried every day, I don’t cry every day, I don’t talk about it every day, I’m not scared every day. But I do – think about it every day. Every day.

And you know what? I always end up in the same place. I got to hug my daughter on Mother’s Day. I was not killed on 9/11 like my friend Vinnie, my inspiration to fight on. I will get to lay eyes on my first grandchild sometime in July. I’m not dealing with the devastation of the Alabama and Mississippi tornados, where beloved families have been ripped apart. I am able to enjoy a laugh with my husband, a meal with my stepson, a story with my stepdaughter, a visit with my father, a practical joke with my brother, a walk with my animal companion (not allowed to call them pets anymore you know!) and countless other small wonders. True, I am not likely to see my 60th birthday, but I AM likely to see my 52nd. And today I am living, loving, laughing - and shopping.

Seems I ended up with a bargain after all.

Blessings and Love to All.

Uprising

I debated for awhile about writing this particular post, mostly because it has taken me awhile to process my feelings and sort through them. I'm also somewhat reluctant to share anything but good news because we all have so much to deal with on a daily basis anyhow, without my stuff muddying up your minds. And yet, the whole purpose of this blog is to keep those who remain interested informed of my health - even though it does digress into my everyday musings on love, life, and the Yankees. So I eventually came to the conclusion to write because...well, that's what I do.

As you have probably surmised by now, by most recent PET/CT scan did not come back with good results - there has again been some small progression of my disease, this time to lymph nodes in my chest, and a spot on my left hip (notice it's still working it's way down my body). The existing tumors in the lymph nodes under my left arm and in the scapula of my shoulder are not bigger, but do show brighter on the scan (meaning they are "active"). It was hoped that the hormone medicine I was on would stop the progression, so of course there is now a need to switch medications (to one called Arimidex). The tumor load is still considered "mild to moderate, closer to mild" and I am still asymptomatic for the most part (truly, I can't always tell if what I'm feeling is due to cancer, side effects, or aging). The good news - doesn't there have to be some? - is that there is still no major organ involvement.

I will spend 4 months on the Arimidex and then scans will be done again to assess the effectiveness of this latest attempt to halt those trigger-happy tumor cells from taking over. If it is unsuccessful, then we proceed to chemotherapy.

And here is where my mind starts to unravel, thinking about how that would impact the quality of my life for I am starting to realize that it is not death itself I fear (although I've certainly had moments where it does), it is dying. It is not being able to drive down to Maryland when I want, it is giving up the pursuits I enjoy (like yoga and Spin and teaching Sunday school) because my body is too frail, it is not wanting to eat and losing weight in an unhealthy fashion, it is the slow, painful leaving of Taryn and Warren and Emily and Ian and Bruce and Chris and my yet-to-be born granddaughter. It is trying to figure out whether or not it is worth it to fight to the bitter end. After all, we all say that "quality of life" is more important than quantity - but I'm not so sure that doesn't change when the reality of mortality hits at some point during this process.

It's been a week since I got the news and yes, I have gotten used to the idea of rising tumor counts and yes, in 4 months I expect that I will have rising expectations as to the results. It seems I can't help but hope for a cure for my incurable disease - then again, I have hopes that the Rangers are going to win the Stanley Cup this year too!

I continue to make a conscious effort to "Be. Here. Now." but I also recognize that, while I may not have a "bucket list" (I'm quite content that I've done all or most of what I needed and wanted to do in life), there are SOME small things I do desire to do - and it may be foolish to put those off for too long. Not ALL planning is bad.

I am ever so grateful for all your healing prayers - and please reserve some for my step-dad Ken (who is being treated for liver cancer and whose long-term prognosis is not very good at this point); for my niece Amanda; and for my friend Caralyn.

Blessings and Love to All.

My Bonnie Lies Over the Ocean

She loved hats and she loved cats. She loved camping and fishing and hiking. She loved flowers and gardening, she loved Halloween and Christmas, she loved cooking and crafts, she loved books and jokes, she loved smoking and drinking. She loved Dave, and she loved Bruce, and she loved Taryn and Emily and Ian, and she loved Warren and Gubby and Ken and Danielle. She loved our mother. And she loved me.

My sister Bonnie lived life on her own terms and as we discovered five sad days ago, she also died on her own terms. A lifetime of hard living caught up with her and her body rebelled - her liver sighed "Enough," her organs went on strike, and she drew her last breath asleep in her own bed, a woman only 50 years old. Months of entreaties from all who loved her to see a doctor and take care of her health fell on deaf ears; she did not want to hear what they might have to say.

Mysteries abound. Did she know she was dying? Was she fearful of being "left behind" if Dave, Bruce and I died before her? Was she more depressed over the loss of my mother than any of us realized? Did she really believe that what was happening to her was just a result of menopause or a particularly nasty flu? Did getting suspended from work cause her to lose her will to live? Did she want to live? Did she want to die? Did she know just how many people would be hurting over her loss?

Her husband, Dave, is devastated. He worshipped this kind-hearted soul, this Coast Guard veteran, this generous and spirited woman who could also be unbelievably difficult to deal with sometimes - they rarely spent even a day apart from one another. Our brother, Bruce, and I can't believe we are no longer a party of three - we wonder how we will ever be able to take a holiday photo of just the two of us. Her best friend, Danielle, is heartbroken over the loss of the girl who could always make her laugh. Her cousins (Susan, Freddie, Buddy, Lisa, Andrew, Michael, and Tree) mourn their childhood playmate, gone too soon from their lives. Her co-workers shake their heads in disbelief; friends from her local bar sadly wonder who will bring in the balloons on holidays now that Bonnie is gone.

I knew she lived unhealthily, that she did not "honor her body" (as my cousin Lisa so eloquently put it) - it was hard to miss. I knew she was ill - the signs were obvious. I knew there was nothing I could do or say that would convince her to see a doctor, get a check-up, or change her lifestyle - God knows I tried, as did many others. I know that her choices were her own, fully embraced without regrets on her part. I even know that this may have been exactly what she wanted. And yet I weep, so deeply, so mournfully, so sorrowfully for my sister whose life I couldn't imagine living, but whose life I cherished and gratefully enjoyed (in small doses). Would that there were more memories to be made.

And so in the words of the old Scottish folk song, one my mother sang to my sister when she was young, and one that I hope my sister is hearing now, embraced in my mother's loving arms:

My Bonnie lies over the ocean

My Bonnie lies over the sea

My Bonnie lies over the ocean

Oh, bring back my Bonnie to me

Blessings and Love to All.

Cat's In The Cradle

I am the grateful beneficiary of an awesome family of in-laws. Last weekend Warren and I took a trip upstate to visit his brother Glenn and sister-in-law Sharon; his sister Lynne and her husband Dom also took the trip from their hometown in Boonville (and yes, according to Lynne it is exactly as it sounds); unfortunately, his sister Ellen couldn't make it down. So the six of us enjoyed some lunch and then ventured out for a little cross-country skiing at Saratoga Spa State Park.

Now I haven't cross-country skiied in about 25 years (and Warren had never done so) so I was a little apprehensive, but with a little coaching from Dom (who is, in fact, a high school coach) I picked it up again fairly quickly. I was a little slow, partly due to inexperience and partly due to the fact that any gripping activity (as with ski poles) causes my hands to go numb and so I have to stop and let them regain feeling. Everyone patiently waited when this happened although poor Sharon at first thought my hands were going numb from the cold and kept feeling badly that she'd forgotten the hand warmers! I reassured her that it had nothing to do with the weather, which was actually sunny and quite mild. Warren did very well (he picks up most athletic endeavors pretty easily for someone who isn't really that much into sports) and we all enjoyed an hour or so of the crisp air and beautiful scenery. And...I only fell twice!

Back at the house we opened a couple of bottles of wine, gathered around while Glenn and Sharon started dinner preparations, and the evening's festivities began with several rounds of Tabolt storytelling...with a twist, though, as Lynne (not Warren and not Glenn and not even Dom) was the one regaling us with tales and anecdotes that had us howling with laughter ("Pete Lee!"). Dinner was followed up by a vigorous boys vs. girls game of "Guesstures" which Sharon is amazing at so it's too bad that Lynne and I couldn't keep up (the boys won), then a frantic search for an obscure Neil Young song ("Old King"), then a Glenn-and-Dom showdown of made-up song lyrics related to one of Lynne's more, um, bizarre stories.

Warren and I left after breakfast the next morning (after Sharon wittily provided me with this post's title, which only the six of us will truly understand) and as we drove home a wonderful feeling of love and contentment stayed with me the whole way down. I do believe I am as in love with Warren's family as I am with him, and as I send love and hugs out to Glenn, Sharon, Lynne and Dom one thing we all know for sure is that the cat is definitely NOT in the cradle!!

Blessings and Love to All.

Lucky Man

I did not believe I would ever get married, and I can't say I was particularly interested in doing so. Oh every once in awhile I gave those thoughts a whirl (even got engaged at one point in the late 80's), but didn't really consider that marriage or a husband was in my wheelhouse (gee, that sounds a little dirty doesn't it?). And yet...here I am.

I met Warren at Mary and Frank's wedding. A redhead - who didn't know that I'm a sucker for a redhead? But we didn't really get to know each other until a few weeks later, when we were recruited to help our friends move into their new digs in NYC. We made each other laugh; I admired his muscles and his driving skills; he was impressed by my toughness and strength. Our first date, several weeks later, was up in the charming and historic town of Saugerties, halfway between Utica (where he lived) and Long Island (where I lived) and where my future husband recited creepy poetry to me in a local cemetery (yeah, I've got a thing for cemeteries too).

We both came with baggage as is normally the case when couples meet in their thirties. Who knew his included an emotionally stunted, alcoholic, bi-polar ex-wife with an abusive boyfriend? And mine included a recent bout (my first one) with breast cancer and single motherhood. Both of ours, of course, included young children. Nevertheless, we navigated our way through the murky waters of dating and then living together until 5 years in when Warren decided to upset the old apple cart and asked me to marry him - in quite a romantic way I might add. I unhesitatingly said yes (after our children gave the OK of course).

Our wedding was perfect. Marriage - now that's another story. Truth be told, I'm not much of a wife. I don't like to cook so I don't do it very often. I'm not good at interior design so our house has kind of a barren look. I don't garden, leaving the meager landscaping duties to my brother and sister. I kind of like to be left alone when I first get home from work, so Warren doesn't get his much-desired loving greeting when HE gets home (well, except from the dog). I'm not big on compromise (a marriage must!), I HATE saying "I'm sorry," and I use the word "fuck" a lot (and not in the way my husband might like!). I'm not a fighter, but I also don't really like to "talk stuff out," I like sports WAY more than he does (yeah...we got 'Melo!), and I am not nearly as affectionate as a good wife, nay a good person, needs to be. I don't always appreciate the extraordinary effort my husband puts into trying to provide for our family ("But where are the RESULTS??" cries the long-time manager as she wrings her hands wondering where all this tuition money is going to come from) and I forget to remember that he is scared and lonely and sad when forced to confront my health situation and to consider a life without the woman he loves (that's me - hard to believe after this little confessional, eh?).

Because despite all of my flaws (The above? That's just a start) Warren considers himself "Lucky Man." Seriously, he actually writes that on his Valentine's Day cards to me and says it often, superhero-style ("Da-da-da-da! I am Lucky Man!!"). And while I recognize that I do also have my virtues (again...too many to name), I still...am not the wife I should be. I know it - and I'm quite honestly not likely to change. I am, however, profoundly appreciative of the fact that I am loved whole-heartedly and unequivocally by the man who will be my husband until death truly do us part.

Blessings and Love to All - but mostly to Warren today.

Lido Shuffle

In the car for 5 hours, with nothing but an iPod full of music/potential blog post titles and my thoughts to keep me company while I drive home from a magical and uplifting visit with Taryn in Maryland, it’s inevitable perhaps that those thoughts veer wildly from joyful exuberance to crushing sadness. That “Walking on Sunshine” segues into “If You Leave” and “Shut Up And Drive” gives way to “Oh Very Young” and “Raise Your Glass” slips over to “Love Hurts” (yeah, I know – take the damn thing off “shuffle” and I won’t have this problem!). My feeling of invincibility slowly seeps out of me (as does my voice. I sing - if you can call it that - at the top of my lungs when alone in the car) with every mile driven; my imaginary future fades into a fuzzy memory; and I switch back into reality once again.

It’s a funny thing, the in-between (treatments, doctor visits, tests, side effects – pick an “in between”). Most of the time I am just going about my daily business with little thought of the future, little worry about the progress of my cancer, little fear of what I know is coming. I try to stay ahead of my workload at the office (OK, an impossibility but I’m nothing if not optimistic); I follow up with my stepfather and brother and sister and uncle on their various and sundry health issues; I make plans with Warren or friends or neighbors for evenings out; I eagerly devour the tidbits of academic information offered by Taryn and Emily and Ian. I watch TV (“Raising Hope” – easily one of the funniest shows I’ve ever seen) and go to yoga and Spin (OK fine truth be told I took a little break the last couple of weeks) and update my Facebook status and read my e-books (totally digging the Keith Richards autobiography right now) and search for new apps for my iPad (“Cosmic Top”!!). But every so often, unexpected and unannounced, my everyday existence is impaled by the sorrowful realization that the longevity we all crave is not likely to be available to me. It doesn’t terrify me or horrify me or anger me or irritate me – it just makes me sad. I just cry out loud (as I did in the car on the way home Sunday) “I don’t want to leave! I don’t want to leave!”

And then, fortunately, because I AM surrounded by wonderful, loving, supportive and compassionate humans (and Jill, you deserve a special shout out on this front), I let the negative slide slowly away and once again rejoice in all that I am blessed with. “The End” segues into “This Beat Goes On” and “Cryin’” gives way to “Girls Just Wanna Have Fun” and “Slippin’ Away” slips over to “Love Is All Around Me.” You know - I think I’ll leave the shuffle on for now.

Blessings and Love to All.

Needles and Pins

So yesterday my sweet nurse (I'll call her "J") sticks her needle in my vein to get me ready for my Zometa infusion and I watch as she wriggles it around, a perplexed look on her face, trying to get it to offer up my blood. When it doesn't work, she inserts another needle right next to it ("Don't worry!" she chirps, "I'll take the first one out when I'm done!"), beaming when this one takes and working to stem the slight flow of blood that slowly oozes from the first. I tease her about the mess she is making on my arm, advising that this is a blog-worthy incident and assuring her that all names will be changed to protect the innocent. "J" is unfazed, says she just wants to know when the book comes out so she can read all about it.

As I am infused, I receive an unexpected visitor - my new oncologist. I had an appointment to see him on February 10th, but he came looking for me anyhow. Point in his favor. We started to chat about my case and it was clear he had read the file as he had knowledge of many of the details. Another point in his favor - usually I have to relate the whole sordid tale from its start 16 years ago all the way to the present. I'm starting to like this guy! (Actually, "J" had told me she thought I would.) He looks me in the eye. He listens to me. He accommodates my request to have my follow-up scans done in March instead of February since I continue to be asymptomatic physically and the tumor load is so small. He agrees that I don't have to come back on the 10th unless I think I need to (I don't). I warn him that I've been through 6 oncologists in 6 years and that I expect him to stick around awhile. He nervously agrees.

Most importantly, he put my mind at ease about the side effects I've been experiencing from the Aromasin. Over the past several weeks, what started as mild tingling in my fingertips has developed into major tingling, numbness, and joint pain in my hands and on up to my elbows (on occasion), affecting my ability to sleep through the night, engage in fine motor skills (buttons, arrrgghhhh!), and achieve arm balances in yoga. It actually becomes quite painful at times, not to mention frustrating when I have to stop what I'm doing (blowdrying my hair, signing documents, putting on jewelry, cooking - alright in fairness I don't cook much but wow, hands are like totally important!), wait for the pins and needles to subside and sensation to return before resuming whatever activity I was engaged in. I don't mind making adjustments (I've had to do so much as a result of surgeries and medications over the years) but I was worried that I was doing permanent damage to my nerves.

Reassured by my oncologist that I am not, that this side effect, while uncomfortable, is not dangerous, I resolve to just suck it up, make the changes I need to to deal with it, and recognize that after awhile whatever adjustments I've made will become second nature, just like the other ones have - chewing on one side of my mouth, covering (as best I can) the bald spot on the back of my head, checking for stray drool/food on the part of my chin I can't feel, Spinning instead of running. Still...those damn buttons! Arrrgghhhh!

A quick shout out to some folks that I reconnected with this past weekend. Guys, after 30 years I was a little nervous about seeing you all after so much time had passed, but it took you mere seconds to make me feel loved and welcome again. Your friendship meant a great deal to me back then and now I know why - you are just plain terrific people (who, by the way, are still able to make me laugh long and loudly). Here's to Dave, Joanne, Tricia, Barry, Chris ("Ned"), Kevin and Eric. The memories - old and new - are priceless.

Please say prayers for Fred's speedy recovery everyone and...

Blessings and Love to All.

Rock the Boat

Not sure I need to post another word, given the photo evidence above of the fun time Taryn and I had on our post-Christmas cruise!


What we did was fun – swimming with the dolphins (despite some VERY cold temperatures in and out of the water that day); buying jewelry in Grand Cayman (tanzanite, of course, because there is “ONLY ONE TANZANITE MINE IN AFRICA AND IT’S RUNNING OUT!”); dining on board ship (we found a restaurant that had chicken parmesan, Taryn’s favorite); ATV’ing in Cozumel (yes, I was a bit of a maniac on the quad); drinking margaritas and doing tequila shots at Senor Frog’s (a proud moment as a mother, teaching my daughter how to do a tequila shot – thanks for the lessons Lisa!); losing money in the casino (what, you thought we would win?); shopping for the perfect pink sombrero. So what if the waves were so high the first day that it was hard to stand upright (and hard to hold on to one’s lunch – poor Taryn needed some Dramamine to get through it). And so what if the overcast skies and moderate temperatures spoiled any chance for a tan? It was still vacation – and we enjoyed every minute of it.


Yes, what we did was fun. But what we had, what we enjoyed? A priceless opportunity to share precious time together, memory-making moments in the here and now, laughing with carefree abandon, and loving as only a mother and daughter can.


We stayed in Florida a few days after arriving back in Miami so that Taryn could spend time with Chris. Warren came down so that we could all spend New Year’s Eve together and our friend Danny B. made us all the most magnificent meal that evening. He is a culinary wonder and we were immeasurably spoiled by him. We rang in the new year quietly but happily.


I also got the opportunity I’ve been seeking for 5 years now to visit my cousin Fred in Stuart, FL. That’s a photo of us above. Fred and I pretty much grew up together - our mothers were first cousins and best friends (and ironically, both died of pancreatic cancer within a year of each other); we were born 2 weeks apart from each other, first born in each family; our sisters were born within months of each other, our brothers within weeks of each other (yes, Trish, my mother failed to provide you with a “counterpart cousin”). Next to my cousins Lisa and Bud, I probably spent more time with Fred than anyone else as a child. For many reasons, too numerous and personal to go into here, we lost touch in our early adult years, but reconnected several years ago and vowed to (at some point) get together. Which we (Warren and I) did, the Sunday after New Year’s.


We spent some time at Fred’s house, getting to know each other again and when his daughter, Liz, made mention of her Dad’s “OCD” with respect to where things go in the house Warren just looked at me with a “Wow, that sounds familiar!” expression on his face. And during lunch at a local restaurant right on the waterfront we confirmed what we already suspected - we are more alike than not in a great many areas of our lives (for instance we are both absolutely great-looking for our age AND terribly bright and humorous to boot). Fred and I spent some time reminiscing (not too much – neither of us thought of our childhoods as a magical time!) and looking at old photo albums, some time dishing about our families, but most of the time was spent enjoying the present moments together. And we agreed – it will not be another 20 years before we see each other again.


On a health note, I am officially the George Steinbrenner of cancer patients – about to break in a new oncologist, the 6th one in 6 years. Why do they keep leaving me? Are they pissed because I keep hanging around and hanging around and hanging around long after most in my circumstances expire? Guess it’s exhausting keeping me alive for so long – the latest one is actually leaving the country to go practice medicine abroad (so she says). Any bets on whether or not I outlast this next one?

My wish is that we all get to enjoy 2011 to its absolute fullest. Blessings and Love to All.