Author Archives: michaelandmomtalkcancer

To my dear, beautiful forever friends and family,

Today, starting with gratitude is truly the only place I can start, because that is where we left off. The words are trite, cliche, ordinary, but oh so heartfelt and genuine, thank you, thank you, thank you, thank you……. I am, we are, so humbled by your incredible support and love. May was the month that you lifted me up yet again. My heart, my soul, my entire being. 

May is also a month of reminders….. Seven years ago, May 12, 2016, I lost my husband and my children lost their father to cancer. I had to become mom and dad. Nurturing parent and unshakeable provider. I was fun vs. discipline. No more good cop and bad cop. I was both. I had to be tough AND understanding. The voice of reason and the heart of passion. Like “BOGO” at Publix. Two for the price of one. Or maybe one for the price of two? Sometimes it has been overwhelming and so lonely, sometimes an excuse to just laugh and let some things slide. When Michael was diagnosed with cancer, there was an even more pronounced juxtaposition, though. Was Patrice’s 17 month cancer journey a gift or curse? It had taught us so much, prepared us, it gave us insight and knowledge we would not have had otherwise. There was a feeling of Michael (and this mama right here) doing this for Patrice, for dad. Making it right. Fixing the mistake of Patrice passing away too young. It felt like a tragic blessing to have already experienced cancer. A heartbreaking gift. The flip side, not having Patrice beside me, not having a husband, a father, a partner, being alone going through Michael’s diagnosis and complications, has been an underlying pain and sorrow. I have so many doubts in my decisions. I question if I am doing the right thing. Too much? Too little?  I wonder if one, singular parent can give enough not only to Michael, but his 2 siblings, Jennifer and Steven, as well. How can I do this? It is so heavy. But then, out of the blue, you, all of you reading this, arrive in super hero capes and swoop in to my rescue. Even though you cannot be my husband, or my children’s father, you take away an enormous burden. An added stress that I am not sure I could handle without you. I am not alone. Again, I can only offer my sincere deeper-and-wider-than-you-can-ever-imagine, thank you. 

For Michael, the month of May was a reminder that our “chacha” is not over, and the whole “life is not linear” theme we are living by, is not just a passing concept, but our truth. Michael said it recently in an interview: he is living with chronic GVHD. Chronic is not the word that struck me. “Living” is the word that touched and moved my heart. As we have said so many times, we cannot go back to who we were before. But I think hearing him say those words so clearly and without pause, without any tremor in his voice, with no hesitation or doubt, I really saw that acceptance was not just about the cancer diagnosis, the BMT, the hospital admissions, the medications, the pain, the setbacks, facing mortality over and over again. No, the acceptance is about accepting that he is still alive. Changed. Full of purpose. Not the life we expected. Not linear. Not straightforward. But deep. Wide. And still here, whatever that means within the constraints of a chronological timeline.

May was also the month of Michael’s birthday. May 19th. He turned 22. We fondly call him 22 plus 90 (the number of ECP treatments completed by his birthday), so actually, 112 years mentally, spiritually, and considering everything his body has been through, probably 112 years is close to accurate physically, as well. It’s a joke, but the glimmer of truth is there. The nurses in the pheresis unit at Sylvester, where Michael still does ECP twice a week, see his date of birth on his chart. They have confirmed it over 90 times. They knew it was coming. This is not Nicklaus Children’s Hospital I am talking about, this is Sylvester. The adult hospital that treats a LOT of oncology patients on a daily basis. I know Michael is amazing and wise and wonderful. He is inspirational and motivational. He is beautiful and so willing to help other cancer survivors. I see it. I talk about it. But I live with him. So you know, sometimes we don’t MISS the forest for the trees, but we have hung out in the forest pretty much 24/7 for almost 3 years so we forget to TELL the forest how unique and special it actually is. Surviving in the desert. Surviving against all odds. Not only surviving but making the world more beautiful. Then, we get reminded. About one week before Michael’s birthday the head of ECP called me aside and asked if it would be ok if they put up balloons and maybe bought some vegan, non-dairy cupcakes for Michael on his birthday. He was scheduled to have ECP treatment that day and they wanted to celebrate his birthday with us. But here is the thing, it was not just the gesture of them using their own money to buy balloons and cupcakes, come in early to decorate, take the time to make a handwritten card that ALL the nurses in the unit signed. Nope. It was when Vera, the pheresis manager, asked me about Michael’s birthday, she said, You know, Michael is special to us. What he is doing is so hard. ECP is so hard. Cancer. BMT. GVHD. Chronic GVHD. But he comes in and he smiles and talks to us. The needles are huge and they hurt, but he doesn’t complain. ECP is exhausting but he does not back down. GVHD is unpredictable and dangerous and has almost taken his life more than once, but he keeps standing up. He is a young adult hanging out with his mom and somehow having fun. Making a difference. Even in the midst of everything he is going through. Your son is special to us. Boom. It was a good reminder for me. Yes, he has blown me away with who he has become, but it is really eye-opening to hear it from someone on the outside. Maybe I take for granted that we still smile and laugh and dance and make podcasts and rap videos and tiktoks and get excited about speaking and our support groups. We love making videos and sharing our experience and reaching out to other survivors and caregivers. It happened so organically, it feels natural. But maybe it IS the road less taken. The forest really is miraculous. The forest that I live with.

And his birthday was lovely and celebratory and oh so special.

Unfortunately, the week following his birthday, he got sick. Fever, chills, no appetite. As some of you know, when you have a port, a central line, any fever means going to the hospital. So 5 days after Michael turned 22, we were in the ER at Nicklaus. Ironically, as usual, we (sort of) had fun. We spent time with nurses we love. We saw our BMT team. Smiling doctors. The pharmacists. Security guards. Etc. A kind of homecoming, except that Michael felt like crap. If he had not been sick, it could have been a social outing. The good news, we are home. He is a million times better. Simple influenza, nothing more. But, when you are immunosuppressed, the flu becomes a bit more complex. Cough and congestion linger, but today, he was strong enough to get back to ECP. 

ECP still continues twice a week for now. It is a little unheard of to continue so long at this level, but Michael has certainly been atypical. He is going to start another immunotherapy infusion at Nicklaus. Once a week for 4 weeks and then let’s see how it goes. Still in PT at the hospital twice a week, when we can squeeze it in between other doctor’s appointments. In June we hope to set dates for his knee replacements. We are also speaking, advocating, sharing, connecting, as much as we can. Trying to make the world better. Trying to make even one person feel less alone on their journey. Trying to give back a little of all we have received. Especially from you. You have done so much for us. Been there for us non-stop.

I love you more than words can ever express.

Hello my beautiful, kind, generous, love-filled angels,

When I first started writing these updates, there was no real schedule. No timeline to my bulletins. Whenever it felt right, I just poured out the latest news about Michael from our Nicklaus Children’s Hospital oncology/BMT world. It felt temporary. A glitch in our life. Hoping that by the time the next news flash came around, it would be to let you know it was the final episode, for good reason. Michael was healed. Thank you with all my heart for the love, thank you for the incredible support, we would not be here without you, but this is mom signing off because we would now be heading back to our life BC (before cancer). 

Unless this is your first time reading an update from me, you know this is not how it’s played out. Not even close. The glitch became a chapter. The chapter became a short story. The short story has turned into a novel. I apologize if my analogies have been inconsistent. I have gone from cha cha dances to roller coasters to curvy paths and bumpy roads. I have talked about airplanes, oxygen masks, butterfly wings. I have compared Michael to a superhero and a wise old grandpa, and our care team, including YOU, to angels, magicians, and Santa Claus. So many mixed metaphors. Chemo brain does that. And yes, second hand chemo is a real thing. Ask any oncology parent. But the chapter-turned-to-novel-thing does seem to be a comparison that resonates with me these days. The last 33 months have been enough for a full-fledged, hardcover book. With lots of chapters. Maybe a movie or mini series. Yet we are still here. And that is also miraculous. Magical. The novel has pages that are still being written. We have been part of far too many stories that haven’t had enough chapters. Stories that ended too soon. So, we are grateful that Michael’s book has more pages coming. To be continued, as it were……

We are strangely adapting to life and the list of complications that have been so much more challenging and lengthy than we ever anticipated or believed possible. Michael is still immunosuppressed, which makes some things tricky to navigate. The lines are often blurry, so we go with our gut. Sometimes I am overprotective, sometimes I wonder if we both are too lenient. The lines shift and life is short. We are in this together but he is figuring out his own limitations. At 21 years old, he has lived a lifetime already, and wise beyond those years. The rare chronic graft versus host disease is hanging around, not going anywhere, but it’s stable, as long as he is in this immunocompromised state. So how can we complain? Actually, scratch that, how can I complain? Michael definitely can because being in the hospital for ECP (extracorporeal photopheresis) twice a week every single week IS exhausting, physically and mentally. Some things in life get easier the more you do them, but some things just get heavier and heavier the longer you have to hold them. I am in the chair next to him and I see the effects, even though his chin stays lifted. One of the “OG” nurses, who has been doing ECP longer than anyone we know, told us each ECP treatment is like running a marathon. So far, Michael has run more than 85 marathons in a year and a half. Maybe this puts it into perspective. BUT, the time we spend in the hospital is somehow fun and social, the nurses who share laughter and inside jokes with us, the secretaries who greet us and recognize me by the scent of my essential oils, the committed staff who make it a point to come by, say hello and comment on Michael’s hair, which is a topic of conversation that never gets old. When people visit us in the hospital, they usually don’t want to leave. The human relationship part of this book is proving to be more powerful than chemos and medications and blood treatments. Michael’s labs are still a bit up and down, certain liver labs won’t budge this past month, so let’s see what happens when we talk to his BMT doctor next week and the GVHD specialist the following week. He has lost a few pounds, not a lot, but he is a bit disappointed as he is struggling to gain and maintain weight. He continues PT at the hospital, also twice a week. No news on the dates for his two knee replacements, in the meantime, shoulders and elbows are keeping him from lifting even light weights. Simple movements like putting on a t-shirt or sitting in certain positions hurt, and he gets undefined shooting pains in his back and ribs, but it comes and goes, so we don’t waste time worrying about it. He has found that he can pick up a guitar, and there is no way to express how much joy it brings me to hear him play music when we are at home. If you can’t get the endorphin release from physical activity, music is a pretty good alternative. I know his dad is somewhere watching and sooooo happy that Michael is not only passionately listening to music, but learning to play an instrument. Every week seems to bring additional visits with different specialists, so the schedule is full, but in between the hospital and home, we have kept our focus laser sharp: Purpose. Advocacy. Change. Hope. Love. (You knew “love” was coming.) 

We recently interviewed Andy Shepperd from Project Outrun. We asked him why he created his supercool foundation for pediatric oncology patients and he answered, “I led with my heart, not my head.” In this chapter, I think Michael and I are trying to listen to that lesson from Andy and follow our hearts. And our hearts are leading us to be more open and vulnerable. We have been asked to do interviews, surveys, studies, videos, speeches, to share our insight and knowledge with different groups, in particular teens and young adults, as well as caregivers. Of course. These are now our people. The exclusive club we belong to. Yes, spreading love, but also honesty and truth. We have learned so much, understand so much, and been given so many incredible lessons, the hope is to make it a little better for someone else. Or a little less lonely. As a caregiver I want so much to take away all the pain. That is not realistic and not possible. But making the world a little better, that IS possible… if I follow my heart. 

So here we are writing the next chapter, hoping it can inspire someone. 

YOU inspire me and motivate me every single day to continue…..

I love you

Hello my beautiful friends and forever family that I love and perpetually feel the oh-so-strong desire to thank, hug, hold, and bring into our continued story of hope,

Forgive me for starting with words that are not my own, but I can’t get this Joseph Campbell quote out of my head: We must be willing to let go of the life we planned so as to have the life that is waiting for us. There is another version of the same quote that says to “accept” the life that is waiting for us. I am not sure which one is accurate, but they both work for me. Maybe Joseph said it two ways. And acceptance is one of our BIG themes. Especially lately. One year ago this month, March 2022, marks the moment that we did not give in, we did not give up, we did not “lose a battle”, but we did truly accept and surrender to our new life. Letting go of the “life we had planned” in order to “have the life that is waiting for us.” I did not imagine my future as a cheerleader caregiver, not only for my son but for other caregivers out there. I did not think I would be writing a book revolving around cancer. Hosting a podcast with Michael about our journey together. And possibly legally changing my name to “mom” (just kidding!). And certainly Michael never thought he would be an advocate and such an inspiring motivation for cancer survivors, teens, adults, pretty much anyone who hears him speak, in person or through social media. This kind of goes along with another lesson I have been learning about: dharma. You can not be anything you want, but you CAN be everything you are. That is way deeper when you let it sink in. We really are trying to embrace who we are. At this moment. And it has changed. We have different strengths, different limitations, different knowledge than we did before hepatosplenic t-cell lymphoma turned our world upside down and all around. As much as I loved every moment of my beautiful career and as much as Michael loved his college/surfer/social life, we cannot go back. Even if we wanted to. Instead, we are working to be everything we are right now. We have so much passion for connecting, speaking, sharing, lifting up as many as we can through this story. Our energy has been going in that direction and maybe, just maybe, the butterfly effect is real. And the flutter of our small wings, does make a tiny difference in the world. Maybe we can make the world a little better. 

In the last update, we were doing our best to live in the present, practice mindfulness, while anxiously looking forward to the 3 month check in with the GVHD/BMT specialist, more pulmonary function tests, and new MRI’s of Michael’s knees before meeting the orthopedic surgeon again. It was a lot to wait for. And we are human. Not butterflies. February was the month of love, March was the month of trying not to freak out. I am sort of joking, but not completely. First on the itinerary was the meeting with the GVHD (graft versus host disease) doctor. We love this doctor. He is young, smart, funny, and like Michael, he has great hair. But, he kind of makes Michael nervous, too. Not because he is scary, but because he holds the keys to Michael’s schedule of ECP, of how immunosuppressed he is, of do’s and don’ts, can’s and cannot’s. We had been tentatively, cautiously, quietly excited, because in January, this same doctor had reduced the bi-weekly blood treatment, ECP, to twice a week every OTHER week. It meant a short break for Michael’s body. A little rest between treatments for his constantly irritated port. A moment of respite away from the hospital. Time to breathe. The time also meant Michael could get in the ocean every once in a while. A few of you saw videos of him surfing small waves one day. A kind of miracle, or at least a huge blessing. It went on for a few weeks at this pace, but then, as we watched his labs, his liver enzymes started to creep up. Not quite in the danger zone, but getting there. Before things could go from not ideal to bad, in early March the ECP was put back to twice a week every week. It hurt Michael’s feelings a little bit, I can’t lie. That day we went home and he cried a good cry. I held him tightly and I could feel my heart in my throat. As much as I am there with him at every turn, as much pain as a mama can endure watching her child suffer, as much as I try to understand, how can I? I am not the one getting stuck with giant needles twice a week. And everything else. You know the long list by now. But the tears helped. The bright side, since ECP is back to twice a week every week, his liver is responding, cooling off. The lesson, his new bone marrow is still working on accepting his body and his organs. At least it is reassuring to know that ECP is working. Not just a futile punishment. A non-toxic solution, although time consuming and not always so comfortable. The recent pulmonary tests show lung restriction, it is not great, but not worse than his previous tests since the GVHD first started. We will take it with a smile and even a sigh of relief. The MRI’s of the knees were not as cheerful. The avascular necrosis is pretty much everywhere, and in his knees it’s a perfect stage 4, meaning the only solution is double knee replacement surgery. The surgeon wants to wait a little longer, maybe 6-8 months. Try to strengthen his leg muscles with PT as much as possible, while being careful not to make the collapse worse. It is a fine line, but thankfully he has knowledgeable physical therapists at Sylvester (UM) who understand his limitations and his abilities. We are grateful he is back to PT twice a week. It is a full work week schedule, but we love our nurses, doctors, therapists.

Our goals right now, speaking more. Leading our support groups. The podcast. Writing. Connecting. Sharing. Serving who we can. Especially in the cancer community. So many are too isolated and alone. Especially AYA’s (adolescents and young adults with cancer) and caregivers. They need a little extra love. I believe the reason we feel this need to help others is because we have been so supported by you and our incredible doctors and nurses that are more like family than a medical team. It is so hard to understand if you are not living it, but at the very least, we have not felt alone. And when we did, when we do, we know we have this huge flock of humans loving us. You. Ready to lift us up. Even from a distance.

I swear that I try not to bore you completely with repetitive content. But every time I start to write one of these updates, my heart seems to just open up with so much vulnerability and honesty. I want to pull you all in, those of you who are still here, still reading these messages, tell you how I am continually blown away. Again. I know it is what I always say. But, it has not gotten stale. Not for me, at least. I can never ever take you for granted. As time marches forward in this chapter that turned into a short story that is gradually becoming a novel with a manual on the side, I feel like I am taking you along on the journey with me. With us. You are integral to every success, every inspiration, every lesson. As long as you keep reading, I will keep sharing.

I love you so much.

February, 2023

To my unwavering family that I simply appreciate more and more and more and more (and more……), as time passes and our journey continues,

February is the month of love. It is impossible to avoid the hearts everywhere we go, in stores, in the hospital, even the filters on our social media. Call me naive, yet I just can’t believe that this is a ”bad” thing or something to criticize society or Hallmark for creating. Maybe it IS true, it is a commercial holiday, manufactured to make money. But by now you all know me and I just can’t be cynical, I love LOVE. So, does it really matter, as long as we are reminded to spread that 4 letter word, l-o-v-e? I think sometimes you must be so tired of my eternal lessons, from balance to our cha cha, to acceptance, beauty in pain, body image and perspective, and my last update, reminding us all to be grateful. No matter what. Even when it seems like why? Why should we be grateful for cancer? But we are. Because of the love. And somehow, in some way, every update always circles back to love.

This week I went to a celebration. A colorful, music-filled, humorous, tragic, beautiful party for India Rose Carolina. Some of you were there. India took her last breath in her 5 year old body on January 18, 2023. Anyone who knows this family, cannot help but to feel sad, devastated, cheated that we will not see India’s smile and feel her energy, or in our case, overhear her making loud noises in the 6T (the 6th tower oncology/hematology floor at Nicklaus) room next to ours, wondering if she was laughing, dancing, shouting, or being stubborn, “pulling an India”, as her mama calls it. But we also cannot help but to feel so grateful, blessed, honored to have experienced the passion, life, laughter, and LOVE that she exuded. The whole family exudes. In 5 years she LIVED so much. And her family loved so deeply. Our brains are a bit linear. We want more time, but maybe time is actually deep and wide, not such a straight line. India did not live so many chronological-measured-in-a-direct-kind-of-way days or years, but she lived so deeply. So widely. Such a huge lesson to the 54 year old writing this.  One more reason to say f*#k cancer for taking yet another innocent life, but still, I appreciate with my whole heart and soul the savvy club that we now belong to. The deep and wide club. 

For me and for Michael, the 21 year old kiddo who is my greatest teacher, the deep and wide way of living and loving has become a mantra for us. Not that we achieve it 24/7. But we do get there as often as we can. We try. The past month has been focused even more on giving back to others, knowing it is the best way to lift ourselves. Another one of our mantras. It’s on my refrigerator: “The best way to help yourself, help others”.  In a recent podcast we interviewed Matt Ode, an extraordinary cancer survivor, an energetic beautiful soul, a man spending his life with a mission of serving, especially the cancer community. He has a really cool acronym that he shared with us. No, it is not one of those medical acronyms that make you feel ignorant or that you need a degree to understand like GVHD, AVN, CBC, NPO, TPN, TMA, ECP, etc…. Matt’s favorite acronym: H.O.P.E. Help. One. Person. Every day. It’s a good one. We stand by this, too, feet planted firmly. Well, sometimes we sit with it. Or lie in the hospital bed at Sylvester or Nicklaus. But our chins are up and we believe in hope. Because 31 months after diagnosis, 28 months post bone marrow transplant, Michael is still alive, granted, still in treatment. Mostly ECP, his blood treatment (I know, another acronym, extracorporeal photopheresis). Still living with immunosuppression and medications, with the avascular necrosis, gastroparesis, and chronic GVHD. The orthopedic surgeon ordered another set of MRI’s on both of Michael’s knees next week. From there we see if surgery might be an option. He is so young for knee replacement surgery. It is usually an option reserved for older patients because knee replacements have a short life span, only 15 years or so, not ideal for a typical 21 year old. But Michael is anything but typical. If it can offer a better quality of life, even short term, we are all in. Deeply and widely in. Physical therapy was on hold for a while, Michael had hit a wall and PT did not seem to be helping, according to his therapists. But the orthopedic doctor wants to challenge those thin (I did NOT say skinny!) legs of his, even with the painful necrotic knees and elbows. He needs to build a little more muscle before any surgeries, so Michael will be returning to PT at UM twice a week in March. It is time consuming but it is worth another shot. He has follow ups with the pulmonologist coming up in March, as well. Another pulmonary function test. Keeping an eye on his lungs and also keeping the other eye on the gastroparesis and his off and on appetite. His weight is stable, not gaining weight, much to his chagrin, but at least he is not losing. His mama thinks he looks like the member of a cool rock band, with his skinny jeans that tend to fall off at the hips. His skin is covered in patches and scars, but the more he shares his story, the more he connects with cancer survivors and anyone needing a little inspiration, the more vulnerable he is, which means the braver he is, that discolored skin transforms and becomes like badges of courage and honor. Like some kind of stylish model setting a new trend. And have you seen his hair???? Next week we see the GVHD specialist, too. That one always makes us lose a little sleep the night before. Scratch that, the week before. Michael’s latest labs have shown a slight liver flare up, but we try not to think too much, not worry, keep going and keep our hope. And while we keep going we DO as much H.O.P.E. as possible. The helping one person every day. At least one. Hopefully more.

Our support groups and our podcast seem to be touching lives, so we have become even more committed. We have spoken out to pharmaceutical companies recently for Rare Disease Day, sharing our experiences with the two rare diseases Michael has faced: Hepatosplenic T-cell Lymphoma and Chronic Graft Versus Host Disease. The more vocal we are, the more open and honest, the more vulnerable, the more vocal, open, honest and vulnerable we want to be. It is a good kind of cycle and we are in full blast. Although Michael is still immunosuppressed, we are taking steps to speak publicly, in person, there is nothing like that human energy!  And we BOTH love to talk! Have you noticed? We will be on the Rachael Ray show on March 2nd. They decided to air the segment with us again, I think they liked this inspiring story 🙂

As always, I spoke more about my soul searches than actual health updates. Michael is already a miracle, and now, we try to take the magic and spread it out as far and wide, or maybe deep and wide, as possible…… 

Thank you for being there for me, for us, for each other. I have said it so many times, but I believe it more and more, people are good. YOU reading this, you are not only good, you are angels.

I love you

To my beautiful, beautiful, dear friends,

I think that every update tends to have a kind of thread or theme. Not really on purpose, but it just kind of happens, depending on what we are going through. Since Christmas, our recurring theme seems to be gratitude. Gratitude and love. Both have always been there, but I feel these words resonate in my heart so much lately. And I hear these words out loud in Michael’s vocabulary more and more. Maybe because we are doing more interviews. More podcasts. Talking to more people. Tiktoking and youtubing more. Really trying to connect emotionally and verbally, even if in-person is not always an option. As a mama, a parent, an educator, I have tried to spread love and teach appreciation and perspective, but life is a much better teacher. Way better. Especially a life that has been through so much, that is so fragile and vulnerable, but all that vulnerability resulting in so much strength and power. And love. Always love.

Last month we were given the hard news that Michael’s avascular necrosis has deteriorated his bones even more. We can thank those life-saving, life-changing steroids. In February we will meet with the orthopedic surgeon and look for some future options. Hopefully, not-so-distant-future-options.  It has been hard for this athletic kid, who did his best to exercise his body throughout chemo, radiation, transplant, surgeries, hospitalizations, and more. I have videos of him in a wheelchair lifting 3 pound weights. That is Michael. So the AVN makes this piece of the healing puzzle a bit more complicated. He can no longer lift weights, no longer bike, but we walk. We hit the beach in the evening when the sun is setting, to keep his skin safe from the rays that will aggravate his skin GVHD, and bad knees and all, we plow through the sand, trying to get his heart rate up. Work his lungs, his leg muscles, his heart, his soul. My soul, too. We are so incredibly grateful that we live close to the beach. Grateful that we live in Miami. Grateful that he CAN walk. Only 8 months ago just getting his feet into the sand was a challenge. So right now, those evening strolls are the best for him, physically and mentally. Swimming in the pool is going to be added to the routine, on the days when his port has healed enough after having been accessed for ECP. Every once in a while, we squeeze in another form of healing, submerging into the ocean. Vitamin Sea. The best therapy, although the bacteria keeps us out most of the time. But quality of life must win sometimes too. And we need the ocean for our souls. And if you know me, you know we continue to dance. On the daily. Whatever that entails. It is not always pretty, but it sure is the best endorphin release ever.

Last week we met the oncology/GVHD pulmonologist at Sylvester who quietly surprised us with her kind, lovely manner. She was a positively bright human who took time, listened to his lungs, but listened to his words, as well. She asked the right questions, and gave so much hope for options, if Michael’s lung restriction were to worsen. As of now, his lungs are restricted, but no labels. We know after so much cancer treatment, after all he has been through, his lungs, just like all the other organs, have been a bit beat up. A bit hammered. Abused through no fault of their own. Chemotherapy is not the targeted treatment we wish it could be and that we have hopes it will become. Neither are steroids. Again, the balance of survival vs. side effects. Survival has won and survival has become “living”. Not only “living”, but having purpose and meaning every day. We are grateful to share this message of hope and love. Pain, yes. Body pains and emotional pains. But beauty, hope, love, gratitude, too. 

So January has been a month to concentrate on Michael’s continued GVHD treatments, look for new solutions for the avascular necrosis and gastroparesis, and the biggest focus has been on touching the lives of other cancer survivors, families, caregivers. We are constantly busy, constantly occupied, as we are either in the hospital for treatments and doctor appointments, or holding out our hands to others who need some understanding. Often we are doing both at the same time. We started sharing this story and our “lessons” so organically and it seems to be driving us to a brand new purpose. We have embraced our new roles as guides for others going through similar cancer journeys, similar struggles, or simply life. Because cancer has taught us so much about life. Not just facing a disease, not just navigating oncology struggles, but how to live. We were so blessed to be guests on the Rachael Ray Show in early January and it was inspiring to see the impact of one 21 year old kid and his mom. Because of course, the truth is, it has never been just about us, it has always been about you and how you have been there for us without fail. Without exception. Whatever we have been going through. Sharing our experience has been like sharing a love story. Sometimes heart-breaking, sometimes humorous, sometimes dramatic, always real, always relevant. 

Thank you and we love you. I love you. As long as you are there, I will keep sending you these messages, because you and our connection with you, are the reason we are still here and why we can continue to rise up and do good in this world. Our goal.

Love and so many magical hugs,

ashlee