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
Michael and Mom Talk Cancer 