Author Archives: michaelandmomtalkcancer

Michael and Mom Talk Purpose: Episode 41, Purpose Can Change and Evolve

Join Michael and mom, ashlee, as they chat about a recent Instagram comment from someone looking for purpose. Purpose is sometimes obvious, sometimes not. Sometimes BIG, sometimes simple. It changes and evolves…. Both Michael and ashlee share how purpose gets them out of bed, passion gives them meaning, helping others gives them even more love. #cancer #BMT #love #GVHD #purpose

A Very Late April Update, Raw Reminders, Mental Health, Magic and Miracles

Hello my dear, beautiful, I-am-out-of-adjectives-for-how-amazing-you-are friends and family,

I’m a bit behind in filling you in on our month of April. We are nearly at the end of May and I am still struggling to find all the words. The right words. I am not looking for pity or sympathy as I write this, everyone has their anniversaries of rock bottom moments. The dates that changed us forever. For us, it has been exactly 8 years since my husband Patrice, dad to my 3 babies, took his last breath. I know it sounds crazy after so much time and so many life-altering events with Michael have passed, but nevertheless, when all the notable dates and anniversaries from 2016 come up, crammed into a 25 day period every mid-April to early May, I am stunned and shattered all over again. It starts April 18th with Patrice’s birthday. I can vividly remember being in the hospital for his last ever bite of my homemade chocolaty chocolate cake, then 2 weeks later the final, incredibly heart-wrenching visit with the oncologist who gently sent us home because there was nothing more to do. The following day in May, signing papers for home hospice, including the DNR, and lastly, May 12th. The day he died. Never forgetting the precise moment just before school on Thursday morning. It’s 4 weeks straight of significant time stamps, date stamps, remembrances. The anniversaries are raw reminders. They still bring hot tears and heart aches. But of course, those very same poignant reminders are also prompts and cues to be grateful for life. Every day. Perspective of how precious our moments are. Especially with family. With my kids. With Michael. Love more. Do more. Take a risk. Be kind. Hug. Give. Connect. And back to Love. Patrice died, but he also lived. I have learned infinitely from both. Things I wish I knew, that I wish I embodied before he passed. And somehow, some way, by some circumstance of magic and miracles, Michael is still here. Who knows the why? So, every year, that period from 4/18 to 5/12 seems to open up our floodgates of emotions and reflections. I think since Michael’s diagnosis I feel it all the more. Wishing Patrice were here to help me navigate this long rollercoaster, this unrehearsed, not so choreographed chacha. A partner to look me in the eyes and tell me it will all be ok. Weep with me or try to cheer me up. Agree with me, stand by me for medical decisions, or disagree and open my mind to fresh thoughts. Or just hug me silently. And this year, for some reason, Michael felt those significant dates more, too. As he looks at his own life. The cancer treatments, so like his dad. The outcome, so different. 

Michael continues to face daily challenges, but he keeps getting up every time he is knocked down. The knee replacement has been a bigger hurdle than we ever anticipated. On the other hand, he has a NEW knee. That in itself is magical. We do have to remind each other, almost daily, that healing is NOT linear. Life is not linear. Maybe it is our biggest cliche. One day he seems to be doing better, the next he is limping in agony. Not linear, not straightforward. Our infamous chacha. His liver is stable. Not improving, but not worse. So abracadabra we count that as a victory. A coup. His GI has been a bit complicated recently. He has lost a little more weight. We thought it stemmed from the knee surgery, but who knows? We have tried most of the tricks in the book, but his stomach is not into hocus pocus. We have found those few foods that agree with him consistently and we lean in to those ingredients wholeheartedly. A bit boring to a sophisticated palate, perhaps, but nourishment this healthy mama believes in. Vegetables. Rice. Chicken. Homemade stuff. Whole, healthy foods. Sometimes I try to push the envelope and get creative in the kitchen but I usually end up paying for any complicated cuisine with unfinished meals in my refrigerator. But, he CAN eat. A blessing. We know others who cannot. Cancer taught us that. Appreciate the things we all take for granted. Like eating. So even bland cuisine has become a simple pleasure that we have learned to treasure. He is back to PT at the hospital and for that we are ever so grateful. We had a lapse in insurance, still lapsing, still lagging, but I’m working on resourceful solutions. Also working on myself, trying not to get stressed about the things I cannot control, cannot change, but doing all I can to advocate and change what I can. It is a whole new job title: “momcologist” and self-proclaimed insurance master. Maya Angelou says: “If you don’t like something, change it. If you can’t change it, change your attitude. Don’t complain.” I love this and strive to live by it. So I do what I can to be an active representative, and when I do not succeed in “changing it”, I try NOT to grumble. Truthfully, how can I complain when we have been gifted so many miracles? So much magic. So many second chances. So much support. So much love. Infinite love. 

May is also all about mental health awareness. It is not just a social media thing. It’s real. These last weeks have been tough mentally for Michael, as he really begins to take it all in. His dad’s death. His own survival. Coming to realize all he has been through. Understanding that we still go to the hospital every week, almost 4 years later. It is still our second home. Not really an end in sight, cancer and survivorship has become our life. It is our passion, too. Our heartfelt purpose. We go to the hospital constantly for ECP treatments for chronic GVHD of course, but also for frequent follow ups. Blood draws. Pulmonary function tests. EKGs. Therapies. Exams. He lives not only with chronic GVHD, not only avascular necrosis (AVN), not only the threat of future complications and side effects, plus the many daily medications and immunosuppressants, but also the constant reminders of risk for relapse. Or secondary cancers. So many in our cancer community have relapsed recently. But we focus on the now and in the present moment, we both wake up every day ready to change the world. Make it better. Realizing waking up is its own gift.

We are seeing the liver specialist next week. The following week is GI. Tomorrow we have an appointment with the orthopedic surgeon who gave Michael his new knee and specializes in Michael’s condition of AVN. A few days ago we had a dermatology visit, following up for skin cancers and skin GVHD. Michael was bestowed with a surprise skin biopsy of one of the large discolored patches on his back. His skin GVHD seems to be flaring up, we are not sure the cause. The camouflage spots all over his back and chest have deepened in color, and his thin skin seems to react more to the slightest touch. It makes him all the more beautiful to this mama. He is not the typical dreamboat hunk that he once was, but his shining eyes are full of depth and experience. His smile is genuine and real. He speaks from the heart and his words are so full of wisdom and light. His body has been through so much and he is still standing. Not the athletic, muscular body that the gym workouts gave him, but that inner strength, that core of his, is oh-so-strong.

So we keep going. Our social media, podcast, speaking, volunteer work, advocacy and support groups have all become a way to share inspiration. We believe that if we, Michael and this humbled mama, can make it through these seemingly never-ending life challenges, so can you. Shining the light for others has been the way to light our own path. And our path truly is so bright. Not straightforward. Not laid out perfectly. Not always lined with flowers, but so rich with perspective.

I love you. I am grateful for you. And as you have been there for us I am here for you….

Love and so much magic,

ashee

A March Update: new knee, new rap, chronic GVHD, fertility, and more lessons…..

March, 2024

I am a little behind for a “March” update, it is already mid-April….. Our days seem to be both busy and quiet, full but contained, continuing to move forward, even as we sometimes falter and struggle with the feeling of being stuck, or suspended in time. March picked up where February left off, mostly homebound due to Michael’s new knee, or hospital bound due to not-so-new GVHD, but ever so slowly getting back to walking on the beaches, recording more podcasts, and of course, continuing the social media posts and virtual support groups that keep us connected, even from our well-worn couch in our humble living room. We were inspired to make yet another “rap” (this is number 9!) about the knee replacement and recovery. It gave Michael and I a lot of laughter together, as we find relief in poking a little fun at all of our crazy oncology, BMT, graft versus host disease, avascular necrosis, and too-many-complications-to-name adventures. Humor helps, as does being creative. When we make music, even in the form of a tongue-in-cheek rap, we get to do both. 

Month number two post total knee replacement surgery was definitely an improvement over February, but nevertheless, more painful and ever so much longer than we expected. By now, we should know better, expect the unexpected. That was probably lesson number one, about 45 months ago. Who could have predicted any of this when Michael went to see his pediatrician for a routine blood test just because he was feeling tired?

Of course, lesson one was followed by a million more. We preach that healing is not linear. We even put that one on a t-shirt. Sometimes you teach what you need to learn the most. That and “comparison is the thief of joy”, “your outsides do not define your insides”, “be kind, you never know”, “adapt”, “bounce forward, not back”, “there is no why”, and our ever so popular, especially recently, “this pain will not last forever”. Our struggles really ARE the gifts. The beauty in the pain guides us, to who we are trying to become. I know I am repeating myself right now, forgive me, but here is the thing, the more I learn these lessons, the more I realize that I have to actually practice them every day. Repeat them to myself. Like working out. Like brushing your teeth. I think we have to keep reiterating and applying. Daily. For me, March was a month full of recurring lessons. 

ECP continues. Going back in February was tough. Michael lying immobile in bed with his knee swollen and stiff, still on pain meds at that point, and then those gigantic needles being stuck into his chest, connecting him to the phersis machine, taking out blood, doing the ECP magic to keep his GVHD in check. It was difficult for this mama to sit by and not be able to do anything. Except try to make him smile. Share a funny cat meme. Hold his hand. Or give him space to cry or vent. Use my mad massage skills to try to alleviate some of the leg pain. The last few weeks though, ECP has become routine again. Easier. Familiar. I see it in Michael’s eyes, the way he teases and jokes with the nurses once again. We banter back and forth not only to pass the time, but also because we genuinely care for each other. We are, through circumstance, bonded with these health care angels for life. Recently I said to a cancer caregiver, another mama with a beautiful daughter going through cancer, remission, relapse and a BMT, that it all becomes normal. She very gently corrected me and said no, this is not normal. She is right. There is not a whole lot about this life and these treatments that are “normal”. But we do get used to it. For better or worse.

In March, we also saw Michael’s very kind pulmonologist. She never seems rushed. She has a gift of actually “seeing” her patients. Every 6 months we meet with her, check in. Lucky Michael gets to do a PFT (pulmonary function test), which is not fun. If you have ever done one, you know. No matter how many times he has to sit in the enclosed, glass box, put his lips around a not so comfortable plastic mouthpiece, clip his nostrils shut, breathe, exhale, inhale, HOLD!, on command, it’s a challenge. His lung function has been low since bone marrow transplant, although stable. This month it went down, not a lot, but enough to notice. We hope it is simply from surgery, not intensifying GVHD. We do know the reality of how GVHD attacks the major organs. So far for Michael it’s been: GI, liver, skin, and mouth. The lungs were possible, but this was the first time we heard the words: “yes, lung GVHD”. Knowing and hearing are two different things. I felt Michael deflate just a little. Or a lot. A knock down. But, as usual, he inhaled, with those mostly functioning lungs, and got back up.This kid is determined to do all he can to improve the next PFT, or at the very least, keep it from getting worse. Even though he never completely stopped working out after surgery, never stayed in bed other than the first few days in the hospital, he has obviously been held back by his knee. But lately we are back to gently gaining intensity with our workouts together. He is limited by his knee, by AVN, by GVHD, by treatments that leave him exhausted, but he is constantly pushing his limit. I know I’m his mama, but he really is a pretty motivational human.

March had more news. We found out for sure that Michael is infertile. We pretty much assumed as much. Radiation and chemo are a deadly combo when it comes to fertility, but until he did the test, who really knew? Knowing he is alive is all that matters, but this was an itsy bitsy teeny tiny disappointment. Sort of. He is not sure he WANTS to pass on his genetics. So, we take the information and move forward.

Loss happened this month, too. A man we have never met. Cared for by a woman who has become one of my closest friends, a kindred spirit, soul sister, although we have never met, either. Not in person, anyway. The gift of social media and virtual support groups is that we can connect to people all over. This dear cancer caregiver wife, mama of 6, artist, homeschool educator, human, had a husband given the same diagnosis as Michael. “Given” is maybe not the best word. Like Michael, he had a slim chance of surviving much more than 8 months. He made it almost 2 years. Another reminder that every day Michael wakes up is a kind of miracle. First, I am bound to this woman because her husband and Michael shared the same rare cancer. Then bonded so tightly through my weekly support group. Now we are forever linked because we are both widows, our husbands taken from us, from our children, too soon. Before we were ready. We have become single mamas, raising children, praying we are enough.

And so, Michael and I try not to have bad days. Bad moments, yes. But a whole day? No. Life is too short. We try to find the joy, the hope, the optimism, the peace, in pockets. The small pockets that with practice can become deep pockets. Longer pockets. And the really rough moments, the really difficult mental thoughts, we look them in the eye, recognize them, which is what they really want from us, say hello, and then do our best to keep going forward. The longer we are in this cancer community, this rare disease domain, this chronic GVHD kingdom, the more we realize that we are not alone. And the more we are compelled to be there for others going through it. Or something else. We all have our stuff. The magic is in the purpose, the connections, the vulnerability, I think. Sharing it. It has been our best medicine. That and love.

I love you

February 2024, Groundhog Day for Michael…..

Update February, 2024

In the past few months I have often wondered if I should perhaps stop writing these updates, if my monthly communication may be an extra burden for you to bear, if it seems that I am complaining or rattling on and on….. (and on…..) Our journey with cancer, BMT, complications has been a much longer detour than we expected, and I keep bringing you along on our unpredictable ride. But then I have tiny revelations of reassurance. Like the day I bumped into a mama at the grocery store. A beautiful, kind human with two children that I taught so many lifetimes ago, perhaps a million years in my past…..The children are now grown and while she has hardly aged (there is a Miami Beach miraculous mama gene for looking gorgeous at any age!) her babies are almost unrecognizable to me. This lovely soul from my past told me she continues to read the monthly mini novellas that I write. She still prays and thinks of us and holds Michael and I in her heart. It blew my mind, but also gave me the courage to continue to write today. And if you get only one thing out of this message, I hope you grasp that you are appreciated far beyond what my words can express. You are still such an integral part of our lives, our healing, our motivation, our story…. Thank you.

As for recent happenings… January was dynamic and exciting with our continued chacha, dancing back and forth, moving up and down, going from hospital appointment to appointment, preparing for the long-anticipated knee surgery, feeling full of so many mixed emotions including fear, excitement, expectation and high hopes, terrified of the risks, embracing the possibilities. But in February the music stopped. Instead of dancing back and forth, we were confined to sitting on a hard bench. Outside the dancehall. Waiting. First hot and sticky, then cold and numb. Unable to find a comfortable position. Sitting out as the world continued to prance and twirl in front of us. Watching. Kind of like what cancer does, come to think of it. Life racing forward while you stop and get off. Or maybe this is the wrong metaphor. Maybe February was more like an old fashioned record with a scratch, skipping and repeating the same phrase again and again. For Michael, it was his equivalent of the movie “Groundhog Day”. Living the same day over and over, feeling a bit suspended in time. Sleep has been so difficult with his knee, we are not sure where the days end, where they begin again. 

Our first days of February went something like this:

Michael attempts to get out of bed with a lot of mama help. Nope. Too much pain to put the foot on the floor. Lie down again. Take a pain med. Try again. Slowly, slowly, ever-so-slowly, stand. Somehow make it to the couch. Try to eat, although appetite is non-existent. Take GVHD medications. Ice the knee. With mama help again, manage to get off the couch. Using the walker and wheelchair, do tedious exercises to re-learn how to stand on two feet, learn to walk again. Collapse on the couch. More ice. Try to eat again. Is there anything at all that is appetizing? Do something, a video, a podcast, some writing, a zoom call, anything to feel productive. Take afternoon medications. A massage from this mama to help ease the pain, move the circulation, keep the knee from getting stuck in one position. Slowly, carefully, stand again and with the help of the walker and wheelchair go outside to get fresh air. Collapse on the couch again. More pain meds. More ice. Get a lot of help to make it to the bathroom and take a shower. Try to eat one final time. Still not hungry, now nauseous. Go to bed. Cannot sleep, so talk to this mama, question if the surgery was the right thing after all, cry, laugh, share memes and pet our kitty cats who really do not understand why Michael is just not nearly as nimble as they thought, and remember it will not be like this forever. Remind each other that pain is temporary. Healing is not linear. It WILL get better. Finally we doze off, for at least a few hours…..  the sun comes up…. and we start again…. 

Some days Michael has PT (physical therapy or physical torture?). The first day the home PT, “Rolo”, came to work with Michael, we both cried. Visible tears. Me watching Michael moan and suffer, and Michael trying to comply with Rolo’s directions, but in so much physical agony, I could see his frustration and defeat. But not for long. Rolo, who has become another one of our heroes, another part of our miraculous medical team, pushes Michael to that place where he cannot go any further, then he pushes him one more inch. And Michael, having the mindset he has, pushes HIMSELF yet another inch after that. And there it is. The tears turn to sweat, the moans of agony to grunts of effort. Effort resulting in progress. Slow, turtle paced progress, and no, it is not linear, but as early February became late February, there was no denying how much more Michael could do. The pain, still unrelenting, but it was not stopping him. He could walk. He could get out of bed and shower alone. We were back at the hospital, Michael receiving ECP treatment for his GVHD. Maybe the record had stopped skipping and was playing the next part of the song. Maybe we were finally getting off the hard bench. Maybe we could start to dance again….. a very gentle, slow dance. Maybe our Ground Hog Day was coming to an end…

I am not complaining. We knew it was going to be a rough recovery, but even after everything, after almost 4 years of really, really almost impossibly hard things that Michael has been through, this may be the worst physical pain that he has experienced. There is a huge difference from past pain, of course. THIS is a pain that will get better. It is the pain of healing. This is not the torment of his body giving up and being overtaken by cancer, GVHD, necrosis and more. This is the agony of his body being put back together with new, shiny pieces that do not quite fit. Yet. Titanium and glue adapting to his body. Like the new bone marrow. I joke that this has been KNEE versus host disease. KVHD in addition to GVHD. He has so many bonus parts, parts that have been removed, and a totally different DNA, but he is still my Michael. The same loving soul who ever so courageously shares his story, our story, hoping we can both help someone out there. Turning our continued struggle and pain into meaning and purpose.

We continue to make our inspirational videos together (almost) every day. We have recorded more podcasts to share not only our adventures, but to highlight other beautiful humans going through tough stuff. We had our first review in a health magazine, recommending the podcast to its readers and I think Michael and I were both floored. We made up a new rap about the knee, coming soon! We keep doing all we can to speak, advocate, spread awareness, love, understanding, perspective, support. We are not always enlightened, but we are trying to share what has helped us. The biggest thing, you. Connection. Love. Hope. And again, you. 

I love you…….

The Chacha after the Knee Replacement

Update January, 2024

To my dear, beautiful, friends and family who I appreciate, cherish and cannot imagine what I would do without your unending-love-and-support,

It is time to fill you in yet again, those of you who are still reading these messages…..January was another month of our chacha, another month of forward and back, dancing with progress and pain, continuing to focus on the forward movement, while not denying the past. Feeling the peace that comes with living in the present moment, but also allowing our heart aches to be part of who we are, who we have become. We try not to dwell on what Michael, this mama, and our little family of 4, have been through these last few years, but it lives inside of us. There are also the imprints that show on the outside. For Michael, in the form of scars and marks, for me, it is more subtle, the tired eyes, the new gray hair, deeper lines on my face. PTSD is real, it appears unannounced, jumps out from behind the shadows, surprises us just when we start to relax, to think we are ok. The truth is, at moments we are overwhelmed with the life we have been living, the life we lost, but for the most part, 99.99 percent of the time, we are amazed at how far we have come, how much we have gained, how much we now possess and can give back, how much we continue to laugh, how we keep getting back up, and how fulfilling life is. Even after cancer. Even after a BMT. Even while living with a chronic disease caused by treatment. Eckhart Tolle is one of my favorites right now. I have been leaning into his advice. He says so beautifully, “The primary cause of unhappiness is never the situation but your thoughts about it.” So very true. Similar to our staple philosophy: It is not what happens to you, but how you react. But of course, intrusive thoughts pop up. Uninvited. We acknowledge them, and (try to) move on. Cry to make space for joy. This month we cried. And we were joyful. 

The facts: January was a month of hospital appointments galore. As usual, Michael is continuing the bi-weekly ECP treatments for his chronic GVHD. At one time it was a bit traumatic to see the huge needles, to stay attached to the apheresis machine for hours, to see his blood flow out, get treated, and then return to his body, but it is now part of our normal routine. The nurses have made it not exactly “fun”, but honestly enjoyable to be there, sharing time and healing with them. Added to ECP this month was the total knee replacement surgery, scheduled for January 30th. That date led to the countless pre-op consultations for the surgery in the form of cardiologist, pulmonologist, PCP, GVHD doctor, CT scans, and seemingly endless labs. Not to mention meetings with the anesthesiologist, the orthopedic surgeon himself, and his nurse practitioner. Then the actual surgery, January 30th. I think a part of me was in denial, and did not quite believe Michael would make it past all the hurdles in the shape of the many doctor’s signing off on the surgery. But one by one, all the boxes were checked and he was cleared to have his left knee replaced the last Tuesday of January. We went to bed on the night of January 29th feeling like we were living someone else’s destiny. A knee replacement. Caused by AVN. A result of cancer and GVHD treatment. But this was not a life threatening surgery. It was intended to improve quality of life. The surgeon told us that Michael will never run or play basketball again, but maybe one day he will straighten his leg all the way. Bend it without grimacing. Surf. Of course it will not change the chronic GVHD, but it does add a few options for range of motion that he has not experienced in over 2 and a half years. 

On paper, a knee replacement is most often outpatient. We were told that because of Michael’s  health issues we would probably stay overnight in the hospital. Healing with chronic GVHD is a little slower, a little more complicated. And it has been slow and complex. Maybe it is not even the GVHD making this more challenging. Maybe his body has just been through so much, it was not quite prepared for this new trauma. Either way, the one night stay at the hospital turned into a four day admission. But we are home. We knew it would be a painful surgery, but I am not sure we were quite prepared for this level of constant agony. Michael says his pain tolerance must be low. I think his body is just tired. His mind, too. Not complaining, but the fact is, in 3.5 years he has suffered so much physical pain. So much emotional injury. My heart breaks. The surgery was a success from the standpoint of the surgeon. Michael had so much necrosis in his femur and tibia that they had to shave a lot of bone, then fill it with titanium. The surgeon was able to save the knee cap, which was welcome news. The resident explained that it was as if Michael had his femur and tibia broken, cracked open, sandpapered down, stuffed full of titanium, then glued back together. We keep hearing, now that the surgery is over, that knee replacements are up there with the most painful of recoveries. We agree. But then, as always, the beauty is there, too. The gold in the cracks. In his recent social media posts Michael has stressed that it is not how many times you fall down, but how many times you get back up. I think he is reminding himself not to give up or give in. He is sharing the lesson he needs right now. Getting back up, even when it feels impossible. Pain is temporary. But the beauty is everlasting.

January also brought this mama a few knockdowns. Insurance refusals. Pharmaceutical denials. Searches for solutions to prior authorizations for medications. Loss of Michael’s secondary insurance. But again, Eckhart Tolle is reminding me that right now, we are ok. Alive. Continuing our support groups. Expanding our reach to embrace even more who need hope. Expressing our love and perspective on social media. And so, at this moment, all is well. Writing on my computer. Listening to Michael figure out how to play the guitar with one leg propped up and wrapped in ice. Sharing my inner thoughts with you. The humans I cherish and love. We are grateful for “now”.