Author Archives: michaelandmomtalkcancer

To my dear, beautiful, tenacious, steadfast, patient, kind friends and forever family,

I am overdue for my November update. The last couple of weeks have been full, a little off of our expected plans and path, and we can hear the faint but distinct music of our chacha…..back and forward and back again. The distant beat of the chacha is not bad news, maybe just a little more choreography than we envisioned. Before you become concerned, all is good. I mean, “good” in our sense of the word. “Good” in the oncology/hematology/living-with-a-rare-disease-and-long-term-side-effects world we live in for the undetermined future. Perspective is everything. Physically, today, Michael is stable. Labs are stable. Not better, but not worse. We know the high risk he has for relapse, other cancers, complications, etc. His very feisty GVHD is hanging in there but no “new” ailments. For us, that means life is miraculous and even magical. Like the twinkly lights and holiday music and wrapped presents that are everywhere right about now. Mentally, it is not quite as crystal clear and festive. The ups and downs of reality and truly coming to terms with the last 3.5 years. All we have lived, all we are living, all that is still to come, seems to have caught up with us, with Michael, in recent days. No doubt, life has been incredibly motivational and inspirational most of the time. Cancer makes for profound purpose, deep connections, honest relationships, intense realizations, passionate social media posts. But sometimes it also makes for heartfelt, emotional moments of gasping for air. Comprehending that this is not over and will never be behind us. It means we bounce forward, not back, as I constantly remind myself AND Michael. Maybe one of my greatest lessons. But my 22 year old does have moments of longing to be Michael Cramer, Pre-cancer. Michael Cramer, Surfer. 99.99% of the time he is full of hope and love. Content, peaceful, grateful with where he is. Wise beyond his years. He has become such an incredible human. A role model helping so many inside and outside the cancer community. The purpose we both have gained gives us more fulfillment than we could ever have imagined. But that 0.01% hurts. PTSD is real. And it is not over. He still gets those enormous needles poked into him twice a week. It is normal, but definitely not normal. Our normal. 

We started November with sparks and enthusiasm, making educational videos for WebMD about chronic graft versus host disease, and participating in other video content through various foundations to share our story of hope and advocacy (and did I say love?). We were guests at a beautiful gala to raise money for cancer research, where we saw other kindred spirits who understand and get it, no questions asked. The first 10 days of November we felt like we were on fire, non-stop cancer influencers, making a difference in the world, accomplishing all this between hospital treatments and doctor appointments of course. But it caught up with Michael. Too much, too soon. I mentioned that his labs are stable, but stable for him still means a weakened immune system, low hemoglobin, high liver enzymes. By mid-November he ended up in bed with a fever and some unknown virus. Nothing to fuss over, but with that lower immunity his body takes it hard and recovery is slow. We were reminded that plans must be flexible. We were supposed to speak at the University of Florida in Gainesville, the week before Thanksgiving for an educational session about cancer in young adults, to tell our story, raise awareness, share a real life example. We had been planning our speech for over a month. But given Michael’s health, the trip became impossible. The organizers were creative and managed to zoom us in to a huge screen and the audience got a taste of a very energetic mom and a Michael who sounded congested but managed to summon enough force to be his incredible, inspirational self. We would have preferred to be in person, but this was a pretty amazing compromise. The following week was Thanksgiving and because we had a few days off from the hospital, Michael and I were hoping to make the 3 ½ hour drive north to St. Petersburg to visit my older son Steven. We would finally see his apartment for the first time, meet his friends, stop by where he works, and most importantly, have part of our tiny family united for the holiday. Alas, nope. Michael was still too sick, although not in the hospital. Not inpatient. Stuck at home. Or actually, lucky to be at home, depending on your perspective. In the last few years, we seem to have been blessed with a lot of quality time, just the two of us, Michael and mom, that’s for sure! Of course, we are beyond grateful he was at home, not admitted, but it was a bit of a blow and reality check, I might add, that his health is still fragile, that plans are still tricky. Life is not linear. Healing is not linear. Maybe just another good reminder to be grateful every day. And we are. Every Day. 99.99% of the time.

On the medical front, we finally saw the sought after hepatologist who was thrilled that after various exams and scans, she determined the fibrosis in Michael’s liver is only stage 2. We were worried it may have been worse, much worse, after the relentless beating his liver has taken from 3 years of GVHD and near liver failure. For us, this was like Thanksgiving, Christmas and New Years rolled into one.

He has lost some weight again, so this Friday he has a gastric emptying test. It is a long 5 hour test/scan that we hope will give a little insight into how his digestive tract is functioning. Yes, I promise, we have a holistic dietician and a wonderful team of GI doctors. But as much as we focus on nutrition, diet, healthy supplementation, and doing as much exercise as his joints and muscles can handle, his stomachI is still an issue, many foods are just so hard to tolerate and appetite in general is not what it is for most of the population, let alone a 22 year old. It could be so much worse, though. He CAN eat. Especially my creatively healthy, home cooked recipes. So again, celebrating THAT victory. 

AND, we are now preparing for his first, full knee replacement in January. We have been waiting so long. It is hard to believe it is finally happening. Hoping it helps with mobility and movement, meaning a big boost psychologically, as well. We know it will be a long recovery, but it is also very magical that we are talking about knees, not only chronic GVHD and his battered liver.

Michael is still taking over a dozen medications (and this is after eliminating all but the extremely necessary). His bi-weekly hospital treatments (ECP) are exhausting, and so is the chronic graft versus host disease. The PTSD is always there, lingering. Sometimes PTSD, sometimes anxiety for future issues. But please know we are NOT complaining. Not at all. We KNOW that being alive, every single day he is here, is a gift. A bonus. Whatever that entails. 99.99% of the time. So we will continue to make videos. Share updates. Advocate and tell our story. Find the beauty in the pain. Support anyone who needs it. We are here….. And loving you, reading this…..

To my dear beautiful, loving, lovely, kind friends and family,

It has been just over a month since the last update and as usual, life has definitely not been boring nor conventional, certainly not linear and never quite what we expect. We do have a routine for the dozens of medications Michael still takes on a daily basis. That is the regimen we follow religiously, no matter what else is going on. And we have been working on a fitness formula that seems to keep Michael’s spirits up, even though he is limited by his avascular necrosis. Preparing physically and mentally for the first knee replacement coming up in January. But our modus operandi is flexible. Ever changing. Always adapting. When I close my eyes, I can hear the faint music of our perpetual chacha, the back and forth, the dance that is our life, and while our technique is not even close to perfect, our passionate interpretation makes up for the flaws… at least to this empathetic mama.

October. Significant in that we recognized it has been exactly three years since Michael received his bone marrow transplant. October 27th, 2020. No fanfare. No party. No cake. Not even any special, another-year-has-passed doctor visits or scans. Maybe because we are still at the hospital constantly. So, of course, we were at the hospital that day. 10/27. Hanging out with our amazing nurses during ECP. Extracorporeal photopheresis for the continued chronic graft versus host disease. Our own little commemoration was just a simple Michael and mom video we posted on instagram. A video to remember the BMT. Remember the 6 weeks that Michael spent in so much physical pain, PCA pumps for morphine, the TPN to keep him nourished, the vomiting, the hallucinations, the fear, but the most incredible family/healthcare team ever, at Nicklaus and in our community. You who kept us always in your thoughts, prayers, hearts. Michael and I grew even closer during those 42 days, but I cannot deny wondering at times if we would go home together. It was not the only time I had that thought, but it was the first. Our short instagram video was also to say thank you to YOU, to say we are filled with gratitude for life, love, perspective, and even the really hard stuff. Especially the hard stuff. The BMT saved him from his cancer, but also brought on the chronic GVHD that he lives with. The internal struggle of his blood battling his body. Maybe symbolic for the world right now. A world with so much heartbreak.

I know that Michael and I are but two small people on this planet, but, as always, we continue to share. We feel compelled to try to touch even one life. To do good. To focus on the good. The love. It is not a cure, not a solution, but it gives purpose and maybe it is simplistic and naive, but in my heart, I know it is the reason I am here. Speaking up for what I know to be true. We are humbled by all that goes on around us in the world, but it does not dim our fire or our light.

We feel kind of like connoisseurs on this cancer/bmt/gvhd life we are living. We are not doctors, not oncologists or radiologists. Not GVHD specialists or geniuses or wizards. We are not masters or authorities, but we have been through a lot. And I think the more we have shared, the more we understand. The more we speak about our experiences, the more we hear back from others, and the more we learn. It is a reciprocal life we lead. A life of connections. And it does not seem to be limited to cancer or GVHD. It is a human thing. A heart thing.

Hospital treatments, doctor visits, scans and blood work are still our full-time efforts. In October Michael and I saw a new GI specialist. He simply confirmed the chronic GI GVHD. No surprise. Michael eats such a healthy, albeit limited, diet. He is already doing the right things from the holistic perspective. The doctor did suggest a medication to help increase his appetite and we are exploring very low doses of medical cannabis tinctures. There is so much research behind the benefits. Let’s see. We also met with his BMT/GVHD doctor at Sylvester. Dr. Wang. He started out as such an intimidating figure, after our warm pediatric doctors at Nicklaus. He holds so much scary knowledge about chronic GVHD. There is so much power in his decisions about ECP, medications, other specialists he is constantly bringing in to consult with us. But he has now become part of our inner circle of humans we trust. He knows us. He has seen the raps and heard the podcast. He makes us laugh with his dry, adult humor and sarcasm. Michael and I go right back at him, bantering with ultimate respect, but we have found a way to smile with this adult doctor. We are comfortable enough to feel safe, as we ask any and every question. I think that has become a skill I want to pass on to other patients and caregivers. Ask. Tell. Explain. Question. Be brave and vulnerable. I remember feeling like my husband’s doctors had all the control. What could I know or contribute? I felt small. But with Michael, it is definitely a team and group effort. Equals. As it should be. The Chronic GVHD is hanging in there, affecting Michael’s liver, GI, skin, and mouth, but it is stable. Doesn’t seem to be getting worse. Dr. Wang is going to keep the ECP going, those huge needles and big hearted nurses…… he does want to possibly add one more immunosuppressant, see if it can help get those liver enzymes down, but we will wait until after Michael’s first knee surgery. More immunosuppression means more prone to infections, which is not a great idea before/during/after surgery.

And finally, yesterday, after months of waiting for an appointment, we saw the hepatologist/liver specialist at UM. She spent over an hour sitting with us, talking, going over every detail. She was so incredibly generous with her time, so patient and clear with her responses. It was like a dream come true for a caregiver and her survivor son. Human and personal and not rushed. She wants some follow up scans to “see” the scars, the fibrosis, the liver GVHD has inflicted upon Michael’s insides. We know what the scars look like on his body, but now we will see what the inner ones look like. She was not happy that Michael’s liver enzymes have been elevated for so long, almost 3 years now, but she was elated at how much Michael has recovered from when she saw him last and we were worried about total liver failure. Body failure. For some reason Michael’s chacha really is a dynamic, special cha cha. Backwards steps, yes, but so far, followed by these graceful, powerful forward moves that no one quite expects. I am lucky to be by his side. There must be a reason we are here.

In October we traveled as “Honored Heroes” for the Leukemia and Lymphoma Society all the way to California. It gave both Michael and I a little anxiety to be so far from home. So far from his doctors and the hospitals that know him so well. A 5 hour flight away. It was only a weekend, but since his diagnosis, we have not been in a different time zone. It was beautiful. And it reaffirmed our goals. Advocate. Speak. Connect. Help. Keep doing what we are doing.

Next on our agenda, follow up scans for the hepatologist and continue the same regimen of ECP and immunosuppressants. And spreading love. Of course.

If you are still reading, still here, please know how much I love you. How much I appreciate you and all you have given to us. Every prayer, every thought, every word, comment, emoji, message, energy, love. Nothing goes unnoticed. Gratitude is a key to happiness. I think I must be the happiest girl on the planet, I am that grateful for you.

I love you so much

To my dear, unselfish, kind friends and family that I love beyond measure,

It has been almost a month since my last update and as usual, I probably have too much to share, too much to say…. starting with the symbolism of September. Sometimes in our world we have so many national days for this and awareness months for that. Did you know there is a National Lazy Moms Day? This past Tuesday was National Shamu the Whale Day. And today America is wrapping up “Sourdough September” month. OK. Not that I do not appreciate a lazy mom or love whales. And sourdough bread is great. However, in the plethora of publicized celebrations, sometimes the deeper ones can get a little drowned out. September has a couple of biggies that tug at my heart: Childhood Cancer Awareness month and Blood Cancer Awareness Month. I guess I am biased because both of these cancers have changed my life. The life of my family. Rocked our world. Stopped everything. Turned it upside down. Changed any and every path we thought we would follow. My husband died from blood cancer. My son Michael, as you know, was diagnosed at 19 with a completely unrelated blood cancer and although it was not considered a “pediatric” cancer, he was a pediatric patient. So, both blood cancers and childhood cancers are close to my heart. Too many have died. Some are still here, but facing all the after effects. It is not just the rock hitting the water. It is the ripple, too. It is not only the diagnosis. Not solely the treatment. Not merely the physical effects of chemo and radiation and immunotherapies and drugs and transplants. Not simply the bodily pain and suffering and side effects. Not just the secondary cancers and long term effects, if you do survive. It is also the mental anguish that I can say with almost certainty, does not go away. Not to be a downer or depressing! If you are reading this, you probably know me. I am an eternal optimist. I love people. I love love. I don’t deny the agony. I am not always positive, but I don’t hang out in the space of heartbreak, either. Even when my heart is broken. And yes, in the last few years, it has been  broken over and over and over again. There is the dream of hope and there is the reality of living with cancer, and chronic illness, longterm. We are so grateful Michael is here. It is a daily celebration. A daily gratitude. We appreciate life so much. But it is not easy…..

We spent September at our full time job in treatment and appointments with doctors at the hospital, and also at our other full time job, supporting, speaking out, advocating any way we can. The two seem equally important right now.

At the hospital Michael is continuing ECP. Things are so stable, it is hard to change what is working really well. Michael did lose a little weight, and the latest endoscopy showed, drum roll, chronic graft versus host disease of his GI. Not a real surprise. It does not change so much for our day to day, but he did start a new, very benign medication to help his appetite a bit. Skinny is not so bad, but losing weight was starting to affect his energy. He is eating a bit more now and as only the male species can do, he is celebrating every ounce he has gained in the last 2 weeks. We met with an ENT who specializes in mouth GVHD, and she is closely following the scars and marks that are concealed inside his mouth. Michael lives with the prominent external scars of cancer treatment and skin GVHD on his back and chest, and those hidden scars, inside, too. A bit symbolic of the cancer journey, if you ask me. Mouth cancer is a real threat after such prolonged inflammation, but if it does pop up, this thoughtful, wise doctor is ready. We had the same kind of preemptive visit with pulmonology, keeping the close, watchful eye. There were some improvements in lung function, other deterioration, but it balanced the scale, so we call it a win. In the coming weeks we will have the same sort of visits with GI and a liver specialist, too. Proactive. Or just active. Both. 

Michael’s first knee replacement was scheduled for next month, but has been put on hold until the end of January, 2024. As a boost to help Michael’s GVHD he had been receiving immunotherapy infusions this summer. Turns out those infusions are not compatible with healing from surgery, so we just have to wait a little longer, let those drugs get out of his system. It also gives me a teeny bit of fear, of course. The immunotherapy was helpful, so hopefully this long moment without will not cause any extra hiccups. 

It is good to have these follow ups, to have so many incredible specialists on Michael’s team. He (we) feels so cared for. He feels seen. Heard. Taken seriously. But it is also a constant reality check. Michael had a cancer that does not like to retreat. The only people who have survived, went through some pretty aggressive chemo and a bone marrow transplant. Like Michael. The other option was not an option for us. So now we worry about secondary cancers, the after effects of chemo and radiation, and how to live with a long-term chronic illness. Some days it is definitely tough, but I would not trade these past 3 years. Michael is ALIVE. 

I had a heart-tugging out of body (mind) moment yesterday when Mchael said to me with so much joy and passion, “I hope I live a few more years, so I can get good at guitar. And so I can get really good at public speaking. I have so much I need to do.”  He said it so frankly. Matter-of-factly. “A few more years”…….. Of course, I love that he wants to live every day and has purpose! But because we know so many young adults and children who have passed away, if not from their disease, from a secondary one, early death is kind of like a given. It becomes just part of our mindset, which is a bit strange, especially for a 22 year old. That whole perspective thing of “living life every day” is so cliche, and I have said it too many times, but the more the after effects and secondary cancer screenings are part of the conversation, the more we are in that reality of yes, day by day. Really and truly, day by day. 

We are so fortunate that we have somehow, organically, become advocates and speakers. We have taken this random cancer, this arbitrary diagnosis, and made it personal. Made it our purpose and our focus. Not to complain. Not for people to feel sorry for us. But to take action. I am reading the new Oprah book, written with Arthur Brooks. It is about happiness, but more about love, I think. Arthur Brooks was on a podcast recently talking about how he asked his kids, at a pretty young age, 2 vital questions. Why are you here? As in, why are you alive, why are you on this planet. And number 2, what would you die for. I guess it comes down to purpose. But having an answer to those 2 questions seems to be one of the keys to happiness. I thought I had a purpose before, but maybe now it has expanded. Exponentially. I think I know why I am here. And I am so grateful to live it. I know what I die for, too….. Forgiveness is pretty big, too. No holding grudges against fate or chemo or big pharma or cancer for this mama. It stinks, but these challenges are also my greatest teachers. So, they are gifts. And family and friends. That is YOU. I would not be here, not be smiling, sharing, living, loving, without you. You reading this. 

I wrote too much, I have more to say….. But I will keep raising my voice, as long as anyone will listen.

I love you so much. With every ounce of my heart.

ashlee