Breaking up with tacrolimus….and building a better relationship with my other “immune suppressant” boyfriend :)

Happy Hump Day!

Je suis tres heureux today after I got the official break-up call from the pharmacist.  “Allie, you can go ahead and discontinue tacrolimus.” Music to my ears. As meds come off and immune suppression lowers, I feel closer and closer to the official cure. It was not exactly love at first sight with tacrolimus, as I was gifted a purse with an IV connection to it, 2 days before my brother’s stem cells were released into my bloodstream. Now, I realize this relationship has run its course and I feel confident I have grown from it and can now move forward…… with my other “immunosuppressant boyfriend.  It’s like dating in NYC, you are only as good as your plan B. Ha! #gorillawarfare

Tacky (plan A) did a great job preventing GVHD (transplants very own gorilla warfare) but can cause disrupted sleep as well as tremors, they like to get you off this ASAP…..So, we have weened off it over the past few months and now it is time to move forward with sweet Sirolimus. (Aka plan B) I will stay on sirolimus for a much longer period of time, (about 2 years), it will be a relationship to remember for sure! Ps. This drug is also called rapamune, bring on the “rapa rewards.”

Enough about immunesuppresants as it was a busy and beautiful day at the BMT clinic. In this new life I am really morphing into a true belle française……even showing up 15 minutes to late to my appointment with the simple excuse of, “I do not like rushing, and it was only 15 minutes.” 😉 My favorite tech scolded me for my tardiness but told me I looked pretty (tinted moiaturizer does wonders) and to follow I had a great visit with Uncle Mike and co. He reviewed my lab results with confidence and a touch of cheeky charm and then moved onto more important subjects, like his upcoming trip to France. Followed by a detailed description of the Rhone River cruise. I left feeling jubilant and jalouse! Tout va bien!

That is all for now, hope you laughed a little and remember to always keep my cancer warriors within your thoughts and prayers. I am blessed to be continuing to heal daily and take small steps forward into the future. Here’s to another week of healing and heureusement!

Xoxo

Allie

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Champagne for my forever friends and Empathy for my survivor friends!

Cou Cou Tout le Monde,

Hope everyone had a wonderful week as Fall grows closer and closer, and cozier weather is upon us. (except for those in South Florida, we have at least another 2 more months before we feel any fall “feels”) Good news, I survived and “thrived” at my dear friend’s wedding last weekend in Rhode Island. It was a true celebration of love and for me a coming out party of sorts as I continue to step into my “new” life. Merci Beaucoup to the Mr. and Mrs.

I have struggled with meeting new people and seeing people outside my tight-knit circle as a result of my skin situation (mainly just hyper-pigmentation still slowly fading), as well as “stranger” danger (eek germs!). This weekend thrust me into a group of people I had never met, but also gave me the opportunity to enjoy special moments with some of my forever friends. A true to moment to “thrive.” There was enough Champagne to sink the state of Rhode Island and more love than anyone could possibly imagine, not only between the bride and groom, but their closest family and friends surrounding them.  The 12 piece band played “Don’t Stop Believing,” and I was reminded once again how truly blessed I have been even through this less than ideal journey. (pun intended) My parents were my escorts, as two is always better than one (#twinning). I bustled the bride with her super-sweet sister, sat next to one of my funniest friends and her hubby and across from one of my soul-sisters. (even met and gave my blessing on her new beau, ha). I also reconnected with a my Floral Park, NY favorites and laughed until it hurt. It was as if we had been transported back 5 years in time to the Memorial Day weekend in Mark’s Mother’s backyard where we pretended to be having “petit dej” a Provence. This past weekend was truly Champagne for my forever friends (sparkling perrier for my post-transplant self). Cheers to the Bride and Groom. #domsgotthepower

It was such a breath of fresh air to breathe in the beautiful beaches of Rhode Island (with SPF 50 and my sensational sun hat), but it also had me thinking about some of my fellow survivors. Survivorship sometimes seems to be one of the harder parts of this journey, as not everyone gets to say they are a “survivor,” and are taken from us too soon. After losing Rick two weeks ago, and hearing another” wild wild west” warrior went into early relapse, it breaks my heart a little and makes empathy top of mind. I have learned through this process to finally have empathy, first and foremost for myself. It is necessary for survival and moving forward….but then I ask, how can I have that same empathy for others? Others who’s family’s are left wondering what went wrong and why them? For those still struggling for survival? It is something I am working on everyday.  As a result, I have to ask all of you, when you think about how lucky you are to breathe and wake-up everyday, without the plague of cancer’s past present or future weighing on your mind, to have empathy in EVERY single day for yourself and whatever you are carrying, but also for others. I especially ask for empathy for my survivor friends. Some of you may or may not know, but I was blessed back in Baltimore with a survivor soul sister, Jess. She has guided me even before I relapsed. She epitomizes strength and survivorship. I would not be here without her understanding and empathy. (as well as expertise) She is almost 9 years out of transplant, THRIVING and a true testament of how transplant changes your life for the better. For my local Baltimoreans reading check out her Yoga classes, you will not be disappointed and certainly leave feeling like life is a little bit lighter. Check out the link here for her schedule: http://jessicahensleyyoga.com/

For all of you reading, let’s Make Empathy Great Again….

Until next week, Bon Weekend et Bisous

Allie

 

 

Blessings and Baby Butterfly Wings

IMG_5076

Hello everyone,

Another week has passed and I am continuing to live in gratitude for all the blessings I have been receiving since my rebirth this past April.

One big blessing I am happy to share is that I have been able to FINALLY sleep through the night. My immune suppression dosage continues to come down as I get closer to being 100% Tony, so I was able to move around the time of day I take these meds, as a result, voila, uninterrupted sleep. Praise Be! This is a huge blessing because uninterrupted sleep means my immune system will continue to get stronger even while being on the immune suppressive meds.

My Baby Butterfly wings are continuing to grow everyday, but I am still just about the age of a 4 1/2 month old. Good news is I am smiling and developing quite the new personality, just like a sweet little babe. 😉 This personality is more social than I was at the 3 months mark but still not totally trusting of strangers. Stranger danger is still there sans shots and all. Good news is Baby shots will begin next month and although they will bruise me, they will mark yet another milestone on this journey.

Today I am like the baby in the Bjourn at the Tampa airport, except I am not letting Judy carry me or put me in a stroller! Ha. I am headed to Rhode Island for my sweet soul sister Amy’s nuptials. A day I wouldn’t miss, as we are HS friends and I am one of her 4 ladies in waiting. I was happy my Doctor gave me the “okay,” to fly (versus a 25 drive) as long as I promised to wear a mask, gloves and of course continue to stay off my immune suppressive of choice, ALCOHOL. I will be cheersing to the Cerio’s in true baby form,  sans Champagne. It is not ideal, but the new normal. I am so thankful to even be able to celebrate this special day with some of my favorite people and send A&D on their “marry” way.

Life although unpredictable these past 2 years has been very good to me. I unfortunately received news this past week that one of my fellow warriors had passed, it broke my heart but not my spirit, as I know he would have wanted me to continue doing what I am doing right now: healing and having more memorable moments with my loved ones. Although I am getting glances left and right at the airport, looking a bit peculiar masked and gloved-up, I am alive and truly learning to love life in its purest form.

Thank you to all who continue to read and keep me in your hearts. It means more than words can describe. This week is for Rick and the weeks to come are for all my other warriors, truth is, they carry me and are with me all the way on the journey to theoneandallie.

Xoxo

Allie

 

 

 

syn·chro·nic·i·ty in September

Cou Cou tout le monde!

What a week it has been, sometimes I forget how quickly life passes me by when I am not looking. While Judy and Tony sailed the caribbean seas in Cuba last week I was quite productive around the house and even took sometime to clear out my closet! My closest confidants know this is a seasonal tradition I take on and truly adore every single minute of. Unfortunately, I have less to give away this season, as I spent most of February-June in and out of the hospital rocking my best UA attire. It is these little reminders that the Universe had and continues to have my back. Why else would I be working for a Sport/Athleisure company in my time of need? The Women’s Global team as well as my NAmily kept me cozy and quite outfitted throughout the entire “kicking cancer to the curb,” process. I am of course incredibly grateful and honored to work with such caring and evolved individuals. Had I had taken the job at Balenciaga, I would be neck deep in Alexander Wang bags, (pre Demna takeover for my Fashion groupies) but have no idea what to do with them and most likely not have met as many special someones, like I have at UA.

This my friends is a little thing in the spirit junkie world we call, synchronicity. It is one of my favorite things to talk about and specifically at this time of year, when the seasons are starting to change and fresh adventure is in the air. I feel this for myself right now, as next week I will be taking my first plane ride in over 9 months. It will be with both my parents at my side, but nonetheless, baby steps towards my cancer-free future. My HS best friend is getting married and as one of her lucky loved ones and attendants, I am making the trip North to Rhode Island to share in her special moment, mask and many medicinal prophylactics included. 🙂

I just love September. This morning and this past week I have been reminiscing on the trip I took back to my beloved city of Paris, after my first round with AML. It was one year from right now. It was nothing like any of the other trips I had taken in past. It felt as if my body had been away from my heart for so long that as soon as I returned everything was “in-sync.” It was if I had forgotten through all the fray of cancer and returning to the US, the very special relationship I had built over the years with Paris. It is hard for me to put in words, as it is truly my “happy” place and this last trip, one year ago, solidified that in more ways than one. I continuously go back to Paris in my mind, to that week, to spending time with my French Famille, my French Filles and meeting some of the most interesting and invigorating individuals I have ever met. Le sighhh…. I revel in the less hectic hustle and bustle of the European city life, but I also feel as if I am stepping back in time every moment I breathe in a little Parisian air. The year I spent in Paris studying for my MBA was simply not enough to get my “fix.” I know one day I will be there and it will eventually become my forever home. The synchronicity I share with this special place is too strong and too crucial to my future happiness and health. I remember I kept a map of Paris poster on the door of my hospital room and on my wall at the Hope Lodge as I am a believer in visions. I remained so focused on going back one day, not even VOD could keep me from my dream of one day putting all this pain and suffering behind me and stepping foot on the Parisian streets again and this time saying, “Cou Cou Mon Amour.” (to Paris of course) 😉

Thank you for letting me share this special “souvenir” with all of you this week. It took me back to some of the happiest and special times in my adult life. (so many more to come) I hope those of you reading who have not visited Paris will one day step off the plane at Charles DeGaulle and be as enchanted as I was, it was truly love at first sight.

Bisous Bisous

Allie

 

 

 

Coping with PT(ransplant)SD…with a little help from the 3 Ts…..

Hello everyone!

Happy LDW as we call it in the US of A. Lately it has been quiet around these parts as my parents are sailing somewhere off the coast of Cuba and my twin brother has returned to work. I have had a lot of time to catch-up on all sorts of fun things like: insurance claims, doing my own laundry and taking care of my 13 year old Jack Russell Terrier, Louie. Adulting after transplant is actually quite fun these days. It reminds me once again that I am moving forward past this difficult time in my life and on to brighter, cheerier, cancer-free forever (but for real this time) days.

I still have my days where I feel I am not out of the woods yet. It is mostly triggered by coming in close contact with children (really only at the Grocery store or if I go out to dinner), as kids here are back in school so the germ factory is open for business! It also happens when I wake up at 4 am and lie awake for another 1-2 hours before my mind stops going in circles and when I google chronic GVHD. This my friends is called Post Transplant Stress Disorder. It is real and there is no time like the present to tell the truth to all of you about how it has manifested in my body and three things that help in moving past it.

Actually, a fun(ny) fact for all you fearless followers, I visited with a local OBGYN as told to by my transplant doctor for “add-back” therapy (ie. estrogen), as the hormones that put me before transplant were to protect my ovaries during the very heavy conditioning chemo and they wiped out almost ALL of my estrogen. The Doctor was absolutely lovely and did not agree to “add-back” therapy as I am at high risk for secondary cancers specifically within the first year after transplant. She does not think I have chronic GVHD of the vaginal tissues (yes, I self-diagnose regularly, it is getting better), but in fact I am holding all my PTSD in my bottom. This would explain why I feel like a pre-pubescent teenager, acne included. What is a girl to do when she is holding all of her PTSD in her well, VAGINA? Well, she has to go to rehab. Vagina rehab. 🙂 More to details to come…..

After this diagnosis from my OBGYN, I realized that this is very real and possibly detrimental to my future health overall…… I immediately scheduled 10 more sessions with my Therapist guru Monica Parikh. Therapy would be my first T, of how I would manage and tackle my PTSD. She has coached me since the first battle with leukemia, helping me rid my life of anyone or anything no longer serving me or giving me love. She thoughtfully helped me through many dreadful Doctor appointments at UMD post remission and once I was re-diagnosed, I quickly called her and scheduled bi-weekly sessions. I needed her as an objective voice but also as a spiritual advisor (which is her forte), as I was about to go through the biggest transformation of my life. I did not realize post V.O.D. and post Hope Lodge, how much I still needed her in my life to coach me through the day to day dramas that live on in my head as a result of this transformation, but also to help get me to the other side mentally. There is no one better than her. If interested, check her out at schooloflovenyc.com

As most of you know who follow the blog, I am extremely spiritual. Not only do I believe in Jesus, and as a good Catholic girl once, love myself some Mary, I also love the planets. Astrology, the idea of the I am, and finding your soul first (mainly for me through meditation) in order to heal your body, have all been part of my spiritual transformation over the past 2 years. My second T is for Tarot and it is so fitting because last weekend one of my Tarot reading “soul sisters,” flew down from NYC to drink tea and tarot the nights away. We both gained a thorough interest in Tarot through our healer Ariel Vega, and now have taken it upon ourselves to “ask the cards.” So this past weekend we forced ourselves to dig a little deeper into things that are bothering us and ask the Universe for some spiritual guidance. After this past soul-sister weekend, I feel not only refreshed, but like some of my greatest fears and hardest wounds to heal are fading away. Life is just lighter already….let’s hope my Vagina feels the same on September 27th. 😉

My 3rd and final T is my twin brother Tony. Not only has he saved my life with his healthy stem cells, but he is constantly saving me from myself. He always keeps me positive and is always pushing me to be my best self. We try to get to the gym together at least 3 times a week, as this is a new journey for him too. #bettertogether I cannot express enough how proud I am of how he is handling life back in Bonita and his want and need to continue moving forward towards a healthy and happy life. It is inspiring.

I hope you giggled instead of gagged this week, but once again, this is reality and I am thankful everyday to be able to share it with all of you. To my steadfast survivors reading, this is my journey to the One and Allie and it just keeps getting better! ❤

A plus tard mes amis!

xoxo

Allie

 

Authenticity Only

Hello Everyone,

Lately authenticity seems the only way to be. No more hiding, pretending, co-depending and enabling faux feelings. In fact, it feels unnatural and a bit icky for lack of a better term to even consider not being totally 100% honest with how I am feeling, what I am feeling and who I am nowadays. Authenticité…..it sounds so much better in French! 😉

With that, let’s talk about where my head has been the past 30 days or so. Between the mood swings, hot flashes (which I am happy to report are subsiding slowly but surely), my mind has been in a state of stress. I have been trying to figure out why, while mostly coming up with the hormonal excuse (ha)….Then, something dawned on me the other day as I did a little “deep dive,” to quote my Jones Apparel President, into my mayhem driven mind. A very heavy day was making it way towards me…..deep breaths Allie deep breaths.

Today is the day 2 years ago a very direct Doctor in Maryland told me matter of factly, “You have Leukemia.” I can still remember that moment, like my whole world had come crashing down in 3 words. My Father starting to whimper with tears and my emotionally inept now ex-boyfriend, completely coming unglued. The fearless fellow, who would one day become my friend, coming out of a sea of medical professionals to hold my hand and tell me I was going to be okay, that I had the “good Leukemia.” It was a scene from a movie, but in my state of denial and non-acceptance not MY movie. I could not agree to these terms and I would have no choice but 4 days later begin the what would be a 2 year fight for my life.

Everyday over the last two years has been part of a long, and at sometimes painful journey. A journey which began by myself, in an unfamiliar city, with my family and friends by my side. A journey of biopsy after biopsy, hoping and praying for minimal residual disease to disappear. A journey to relapse, that broke my heart into a million pieces. A journey that then brought fraternal twins together, after four years of being estranged, to form a bond so unbreakable it had to have been written in the stars. A journey that has begun to finally free a young woman from the darkness this disease has brought to her life and a journey that would bring a young woman from fear to faith from this day forward.

Authentically I share this with you because this is the only way I can and will live from this day forward. Sharing my story has saved me as it is the only way for me to give my fellow warriors the spirit to keep fighting forward. To know where I have been, and how with the help of my twin brother, family and friends, I have continued to conquer cancer and crushed it. Everyday brings a new beginning and new blessings. I am just scratching the surface!

Here’s to 2 years of many tears and finally using faith to fight my fears.

This is the journey to The One and Allie.

Bisous Bisous

Allie

Post Cancer Chronicles…What really happens 100+ days post stem cell transplant….(uncensored version)

Hello everyone,

What a whirlwind it has truly been since leaving Moffitt to come back to my parents home in Bonita Springs. Although liberating for the most part, it is adjusting to the new normal that seems to have me “stressing.”

I have to remind myself continuously that I have finally been freed from the black cloud that hung over my head a week or two before monthly visits to the oncologist back in Baltimore. Have a gratitude that I had a sibling, perfect match to donate marrow and do the T reg trial to prevent the most common complication, GVHD. That I overcame acute liver failure and that even in my darkest hours which I have little to no recollection of but remembering to breathe, my soul fought hard to bring my body back to life, to get to this place and the many places I will go from here. I have to remember that there is a bigger purpose in all of this, that this is truly the journey to the “One and Allie.”

BUT…..to say all of this is not “easy” would be a huge understatement. This is not for the weak. Truly. My fellow warriors are INSPIRING, as you have to want to LIVE and fight for your future.

I remember the stress of the leading up to the transplant. It started with choosing where to have transplant, it felt like I remembering thinking, “I am entering the Wild Wild West.” Funny enough, we do manifest our own thoughts, the Moffitt transplant unit is 3 West and 4 West. The 30 days leading up to the transplant were filled with meetings and classes about the could happens, would happen and dos and donts post transplant. (sadly they breezed over Venus Occlusive Disease) All these classes were necessary but certainly daunting when I look back.  However, I would not accept defeat and I knew I would prevail, even if it meant going dark for a few days on Defitelio (the drug used to reverse my VOD).

Those days feel like ages ago, as the truth is, as of late, as my body resets itself and becomes 100% Tony, I have daily struggles. Most recently the forefront of my struggles has been with mood swings as a result of hormone therapy given in high doses to preserve my fertility.  As a woman this was one of the most heart-wrenching conversations to have at the age of 32, but it had to be done prior to the transplant. Unfortunately the aftermath of hormone therapy in high doses can last anywhere from 3-6 months post treatment. We are at month 1.5. My mini-meltdowns over some of the most minute details of daily life are disappointing, as I do not like the feeling of not having control of my emotions. 2019 will bring lots of balance in this department. Salut!

I also at times find myself fighting exhaustion from disrupted sleep. This is most likely as a result of my immune suppression as well as being in the hospital for so many days, only sleeping for maybe 3-4 hours at a time. I have even started skipping my afternoon snooze most days with hopes my nights will have better, more restorative sleep.

My skin, the initial stressor post transplant, has turned into an art project. The bumps have gone away thanks to a dynamite dermatologist down here in Bonita, but I am peeling this beautiful (ha) “Busulfan” tan from one of the chemos still.  At times it is hard to even recognize the person I once was, at a 121 lbs of splotchy skin and bones, the larger than life, loving and always laughing Allie seems a distant memory most days. I know soon enough I will be smiling again more often than I am sad, that I am truly in the cocoon, waiting for my butterfly wings to fully develop, shedding the old skin so I can fly to places much happier than these mood swings, mini-meltdowns and many sleepless nights. I will fly to places where I am free of cancer reminders, free of fear itself, and free of formidable stress.

This too shall pass…..and in this moment I am grateful to share my story and to be here to tell it now and for the many days to come.

Xoxo

Allie