I have spent all my money on skincare and sunscreen only then to have my Dermatologist send me into a tailspin……#allsignspointtoParis

Hello everyone!

I am happy to report that this Holiday season I am cancer free for the first time in a very long time (since I always had minimal residual disease since my diagnosis in 2016, until my remission chemo this past Spring, + my totally perfect plan B cocktail aka bone marrow transplant). I continue to get a little bit of my life back every single day, dis-ease free. Thankful for all of the above and very excited for the New Year and all it will bring. In life, love and the pursuit of a beautiful dis-ease free future! Forever cancer free is the way to be, but certainly there are trade-offs as a lot of my fellow warriors know.

Fortunately, for me, my biggest trade off post-transplant after the liver faux-paus, is having satisfactory skin that I am comfortable in. 😉 Truth is, anything is better than the big C, but this new skin is not only tough for me to look at on a regular basis but also a bit itchy and extra extra sensitive. I am trying to not focus on this for the foreseeable future as I believe with time it will get better and the discoloration and pigmentation will fade. Hormones and all my medications that keep me alive on a daily basis are most likely to blame for a lot of the skin sufferings. However, I went to the dermatologist today and he sent me for a loop. A loop that involved the words “potentially permanent pigmentation,” followed by a long emotional text message while hysterically crying to my love, followed by a missed Trader Joe’s trip (I plan my TJs excursions around when it is not busy) and then a feeling of utter exhaustion from the emotional roller coaster I just took myself on. Le sigh. I had to call on my angels, God and the universe  to set me straight just so I could pull out of the parking lot. Good news, they answered.

Truth is the tears today were tears that I have been holding back for weeks. Partially because of the frequent stares I get from strangers when they see my skin without make-up and also from the draining of my funds. I really try to not let these things get to me, as I cannot even begin to tell you how much money I have spent on healthy, non-toxic skincare products to help fade the hyperpigmentation. But today, it all came crashing down. The products so far have helped a little but reality is, everything worth it, takes time. Especially when you are immune suppressed, in temporary menopause and #stressing about germs at every given second. I am not going to get a chemical peel or try something that could be potentially dangerous, although a quicker fix, so I have to be patient. No longer a “patient,” but practicing patience with my skin. My Puerto Rican and Italian genes are going to love this. 😉 Patience is not a Puerto Rican virtue but here’s to hoping! 🙏🏽

I have also wasted a great deal of emotional energy testing and becoming the lab rat essentially for many “eco-friendly,” and “organic” labeled sunscreens. This absolutely added to my emotional breakdown…….Only to find out that I am allergic to almost ALL sunscreens except Avene products, which funny enough are from France but often currently out of stock in the US. In sunscreen summation: basically all non-toxic entities, including My pre-cancer life, remission romance and my new and improved skincare regime point to France. Life is certainly funny that way!

I update this blog so I can educate my Family and friends on what is going on, to alleviate worry but also let everyone know how I am progressing. But…..I really write this every few weeks for my fellow Warriors. Those still in the war, those in the remission romance, those rebirthing right now, survivors stepping into their new life #100days and most of all in honor of those who were lost in the battle.

Thanks to all who continue to read and continue on this journey with me, remember the best is yet to come!

I am forever grateful to be on the journey to theoneandallie. ❤️

Xoxo

Allie

 

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Survivorship Soliliquoy

Hello friends, family and followers,

What a wonderful last four weeks weeks it’s been post 6 month appointment. I must admit I underestimated how beautiful being a survivor is but also I underestimated the anxiety and other emotions associated with living through this rebirth and remission, while many others facing leukemia are less fortunate.

I had a conversation with my therapist this past week about why Survivorship is the consciously more difficult part of the cancer journey and why I need to give myself time. He said when you were in treatment and anticipating remission, preparing for your new cells, your body was going through a war, and thus your body went into literal “Survivor,” mode. The same type of mode someone would go into if a gun was being held to their head. It is part of our basic instinct and it is a type of fear that actually protects us when our bodies are undergoing trauma and we have no other decision but to let our subconscious survival skills take over!

This was a WOW moment if I ever had one. Meanwhile I have spent the majority of the month of October angsting and being hard on myself for the dark places my mind was going. Thinking and saying to myself, you beat cancer x 2, your liver failed and you are still here, why do you think something catastrophic is going to happen to you again? I realized that I never felt this way during treatment because I was in “survival,” mode, subconsciously. I was without forcing it, letting my subconscious lead…..And my subconscious wanted to win, it wanted to live and so it did just that. It put me in the deepest remission I had ever been in since my diagnosis and it allowed me to accept my new cells, flawlessly, without fail. (Minus the liver fauxpaus #SOS)

Survivor serendipity was all the rage this week as I then spoke to a sweet man, who was a Cuban refugee. He fled Cuba in the 80s, on a boat and 18 days later made it to Miami. Talk about “Survival Skills.” He is a force. I am honored to have met him. He says after his “survivor” experience now he knows he can conquer anything. He went 17 days without food but always held out hope and prayed that one day he would be a citizen of the free world. He has been here ever since, raised 4 beautiful children and has never looked back. He gave me hope and reassurance that one day I will feel the same about my own survivor journey.

This conversation got me thinking and helped me realize right now is a little bit harder emotionally because the conscious mind, unlike our subconscious mind, plays tricks on us. It forces us at times to live in fear, to rethink every noise our bodies make, the list goes on. This is what my therapist calls PTSD. And the truth is, it will go away. Time. It really does heal all wounds along with my meditation practices and living in the present moment. Every. Single. Day. And somedays, the being present struggle is real. But then I think, I am like your trusty 7 year old MAC book pro that you just installed a new hard drive on, I just need time, love and nurturing, patience, as with an entire new system it is going to take time for the computer (and user for that matter) to get used to it. I say MAC Book because MAC’s are quite intuitive, something I learned while an MBA student in Paris, as once they get up and running, they can do just about anything you want them to with finesse and less stress. And friends, that is what our subconscious is, it is our intuition.

So….Here’s to the days ahead where my intuition is thriving and the chattering conscious mind is taking a back seat. It’s all part of my survivorship journey and for that I am forever grateful, to be here and be able to share this long but full of love voyage with all of you! ❤️

This is theoneandallie.

Xoxo

Allie

I’ll have the combo with a call from the past to keep pushing forward……

TGIF!

I just said that out loud to myself and for real, I am incredibly thankful for another Friday in the Florida sun. (And my parents air conditioner) ha! It was a busy and a bit heavy (in a good way) week with appointments, an interview about my cancer journey and my stem-cell savior twin brother, (all the feels), partnered with a bone marrow biopsy and baby vaccines….and we made it and I could not be happier to be moving past this 6 month milestone. I think I am stronger because of it.

Someone asked me the other day how I was feeling…..and I had to finally be honest, I feel physically strong and like I am finally putting this behind me, day by day, but survivorship, although beautiful and the best life has to offer, is a bit “emotionally” bumpy at times. She responded, “So it’s a combo, and you know the combo is always better, because you get the best of both.” She said exactly what I needed to hear and I will be forever grateful and remember that “the combo,” is not just the preferred Portillos order (Only my Chicago followers will get this), but it’s the preferred prescription for moving forward. Cancer free life, I totally love you.

A call from the past came in today, starting with a 410-328, I knew my old Maryland Medicins were calling. It brought back some big emotions but I was quickly calmed by the sound of the Research Attendings voice. His drug, I am convinced was keeping me alive and in remission for the 9 months in 2017. Unfortunately it was not approved so I was pulled off the trial after one year, 3 months later my cancer was quickly making a comeback. The Research required biopsy saved my life by catching and confirming the creeping cancer in January…Thus leading to the more invasive and intricate journey to transplant, a tried and true way to tell cancer to go away for good with twin brother’s stem cells protecting me for the rest of my life. ❤️ The Doctor and I spoke about the journey, he asked about my parents, I told him about my PTSD and he congratulated me on the 6 month milestone. He then ended the conversation with words I will never forget: “Now you can go and live your life, this is in the past and we are very happy to see this happen for you.”

This call from the past was exactly what I needed to perservere through this weekend and for many weekends beyond. Although this journey at times has been darker than I ever imagined, the people I have met along the way have changed and brightened my life in ways I never thought possible and I will carry them with me in gratitude forever.

Here’s to keeping the past in the past, enjoying the present and moving forward into the future!

Xoxo

Allie

All the Good Cs: Courage, Cole’s Parents, Chicago and Camaraderie

Hello Everyone,

Bon Dimanche as my friends and family across the Atlantic say on Sundays. 🙂 I am happy to say that this week was full of many special moments and most importantly all the good Cs. Coming off of the bad C these past 2 years, it is always good to make this letter “good” again!

With that, the first C I am going to talk about is Courage. Everyday I am working towards cultivating Courage versus living in a fear-focused phenomena. It is amazing that today went I put on my Calm app, the daily calm was about Courage. Talk about synchronicity. It is something I reach for everyday as I move forward into my Cancer free life and know that I can handle just about anything when it comes to maintaining my happiness. I also cultivate Courage in order to do things that seemed intuitive in my past life, like getting on an airplane to go see loved ones and experience cooler, crisper temperatures. This takes a lot of Courage, as wearing a mask usually freaks out 75% of travelers, and causes people to stare, and it also forces me to remember that I am in fact immune suppressed. This does not mean I am dying or living a less fulfilled life, but I have to be extra careful when in large groups of people, and most importantly, protect myself. Courage is becoming my best friend, and I have to say, I kind of love it. Every time I have a dark thought, or have a moment where I am frustrated with my skin, feeling insecure about it, (as this saga is still on going and could take up to a year to subside), I remember how courageous I am, along with my fellow survivors. Taking your life back, although seems easy to most, can sometimes be the scariest thing you could have ever imagined. (cue the immunesuppression) But, I also remember that no matter what changes my exterior and interior body are going through, that most people can only see with their eyes, I have chosen to press on and know that this is the “best” of my life and the worst is truly behind me.

Courage is really something, it brought me to see some of my favorite people this past week. Also known as the Kruml’s or Cole’s parents. 🙂 The Kruml’s have been part of our lives since as long as I can really remember. We were football families in the ever-growing and evolving western suburb of Chicago called Naperville. Cole’s parents reside in the City of Chicago, and while we were headed to Naperville to attend my twin’s best friend’s wedding, we made a pit stop in the Windy City first. It was exactly what we needed, crisp, cool air and catching-up included.

Chicago is one of those cities that just makes you feel like you are at home. Nothing like good Midwestern city dwellers to keep that feeling going for as long as you let them. Tony and I love it and are proud to call ourselves “midwesties,” and Chicago suburban babes.

The camaraderie came a day later, when we headed to the burbs to #getbriggywithit. My twin prior to transplant had spent about 7+ years on the West Coast in San Diego, missing many of his closest copains, who he left back in Chicago. It was a beautiful moment seeing my brother step back into “bro,” mode when we arrived at the beautiful Batavia ceremony. He saw not only long lost highschool brothers, but also some of his Montana boys as well as his tride and true galpal, Tiff, that had also made the trip. It was an amazing experience all the way around, and Tony’s friendships, once lost in translation, truly came full circle. I was lucky enough myself to see some of my closest copines from my Rosary days. (the HS I attended) It reminded me how lucky I have been all throughout my life to be constantly surrounded by strong but also incredibly sweet women. Love was seriously in the air.

I left Chicago last night feeling so happy and a bit hyped from all the excitement of the short trip’s events. However, I am happy to be home and finally able to sit down at my computer, to tell you all about the special week I had with old friends, new friends and most importantly forever friends.

Cheers to good times we had this weekend, and the many more to come! So grateful for all the goodness this week provided.

Thanks for continuing to follow along with me on the journey to theoneandallie, the BEST is yet to come, but moments like this keep taking my happiness meter to another level.

xoxo

Allie

 

 

 

Venus in Retrograde throwing emotional Retro-shade…

Hello everyone,

Hopefully so far you are enjoying your Saturday and cooler temps are upon you. Fortunately, the Florida sun has taken a little reprieve this week and it is almost bearable to be outside for more than 2 hours in the morning! I will take these small victories as right now it is Venus retrograde, and she is throwing out some serious retro-shade, and unfortunately it is not the kind of shade I am looking for.

Venus is the LOVE planet, and during this “shady soiree” of sorts, she has many of us reviewing and revisiting past times that may be close to the heart. Currently she is sashaying through Scorpio, which is a VERY intense sign and one that pulls on our deepest emotions and heartstrings. (I am a Scorpio rising, your rising sign is how the world perceives you, I believe most people would say I am “intense,” ha) With that, right now me, it is all about my deepest emotions, even the ones buried deep in the back. This week felt heavier than usual through Wednesday, and as I result I was not able to get my blog out on time. I was as the kids say, “feeling all the feels,” and it was emotionally exhausting.

This all began last Saturday….as my twin brother and I drove to Sarasota to say Aurevoir to a fellow warrior. Rick was truly an inspiration to me at 66 years old. Although I spoke to his wife, more than I spoke to him, I was in awe when he left the hospital 19 days post transplant, a warrior with WILL and force to be reckoned with. He wanted to LIVE and be with his love, leaving leukemia in the dust. Seeing him gone too soon, and the many people’s lives he impacted over his 66 years of life, left me feeling forever grateful for each morning I wake up and get to leave Leuk in the shadows of my pre-transplant life. Each day I live is for people like Rick, a fallen soldier, taken too soon.

The hits kept coming from vehement Venus as I found out my Forever’s Father was about to take his last breaths. It was as if my heart was beating one hundred miles per hour, my mind racing over and over (to some of my darkest moments), as I was trying to find the perfect amount of empathy (the same empathy I have had to have for myself) to express as his family said goodbye to their patriarch. He passed late Wednesday night after a quick one month battle with Lung cancer, and I have to admit, after Wednesday it felt as if another angel was watching over me. And he is. Thanks for making life here, after Leukemia, a little less heavy Claude, and reminding me that I am moving forward, with your protection of course! ❤

I have to say, the memorial and passing  of such a special soul this week was a bit horrible and heavy, however, Venus was not all venom. She did sprinkle in some memories of moments that I will never forget. My Marathon in Argentina was 4 years ago this past week, and it brought back so many happy times to top of mind. I was reminded once again, that you really can do anything you put your mind to. EVEN BEAT CANCER, twice. I remember why I chose to do my Marathon 4 years ago, I was mending a broken heart, and needed purpose, healthy purpose. So I phoned my running friend Faith, and we hit the ground running. My Marathon not only mended my broken heart, but brought me so many memorable moments that have me itching to get back to running and of course, traveling. While I am completing my personal marathon everyday with my new marrow, I also plan on hitting the pavement and building back-up to a marathon in 2019.

Here’s to a weekend of healing and feeling less “heavy.” The Best is Yet to Come.

Xoxo

Allie

 

 

 

 

Going to Quote Gisele…Girl Gets It

Hello everyone!

TGIT. It’s been a busy week in Bonita Springs involving 10+ hours of sleep and a hump day sage fest, when my parents went out to eat. Pretty sure my parents thought I attempted to burn the house down last night, upon returning…ha, nope, just cleansed all the pent-up crazy energy I have been “balancing” ALL week. Good thing Gisele was spilling about her mind-mayhem this week, but I’ll get to that in a second.

I am currently en route with my twin brother to a mini getaway in Miami for the night, as my brother has a friend DJing near Brickell and any excuse I can get for change of scenery, I am taking. I am going to enjoy the cozy hotel room, do my bi-weekly Biologique Reserche mask and go to bed early while he on the other hand is going to get down with the cool kids. This is exactly what I need with the state of my consciousness this week. A change of scenery and reminder I am moving forward. As right now, my mind is at best, maniacle.

Truth is everyday is a battle with my mind. I believe part of it is I was born this way and I believe the other part is as a result of trauma from being a survivor and well, hormones.  It is by no means debilitating, as I do not take anti-depressants or mood stabilizers, as some days I sense it more than others and other days it ceases to exist. I notice that exercise, meditation and good sleep have the ability to silence the crazy, yes, voices inside my head. However, this week she (I only assume she’s female, because her crazy thoughts remind me of my 25 year old self-conscious self), has been firing off the anxious thoughts like she is at target practice. Ca suffit (that’s enough), I have found myself saying more often than not  this past week. I felt like saying, “Give it a rest sister, serenity is all I am asking for!”

Good news is, in the midst of my tirade of thoughts, an interview aired this week with Gisele Bundchen. She opened about her anxiety, her mind, how she used to live off coffee and cigarettes in her prime, she also touched on her relationship with who, a fair majority of women consider the “sexiest man alive,” and then she talked about the elephant in the room for the past 7 years, his ex-girlfriend. I was so charmed by this babe, and to boot she was rocking Under Armour leggings. 🙂 She showed true bravery, elegance and beauty. Inside and out. She left me thinking, I am not completely crazy, I am just me and my “mind is an instrument, and I need to not let it play me.” Even the most beautiful woman in the world has her struggles. I believe we all do, but it is how we move forward and heal our selves holistically that allows us all to live happy fulfilling lives. The chemo and my brother’s cells cured my cancer, but everyday I am healing from the trauma. The trauma of diagnosis, disease, recovery, relapse, the list goes on. Being able to blog about this is one way I move further towards the future, a future without cancer and future with less crazy conscious thoughts.

I am off to turn off my electronics and tune my instrument.

Here’s to another week in the Florida sun (actually the AC, but the sun sounded so much better)

XoXo

Allie

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