A brief November Update, from mama ashlee

At the risk of repeating myself, I still feel the need to share this little update….. there are common themes from the latest blog post, but maybe a few different details about my Michael’s health…. the ALWAYS common thread, the gratitude for you all, reading this…. 

My dear beautiful, kind, never-can-I-express-my-love-to-you-enough friends and family,

The last month seems to have been as full as the last 2 and a half years. Once in a while the roller coaster slows down and we open our eyes, start to shift in our seats, ready to unbuckle the seat belt and step off, take a break, but then it takes off again! It is not quite the same breakneck speed as last year and the year before at this time, but still so many ups and downs and unexpected turns. I know that is life. Of course. I just seem to feel each and every change in direction so much more than pre-Michael-having-cancer life. I know that “feeling” is good. I believe that with all my heart. Better to “feel” than to be numb, even if that means feeling pain, because our pain continues to be accompanied by beauty.

We have talked so much about balance in the past, strived for balance, reached for it, made it our goal, but this last month we are perhaps finally coming to terms with it. Actually, no, not really balance. Maybe the study of how opposing forces must exist in this life, on this planet. This dimension. I am and have always been an optimist. I think some part of my being thought this would save me from the dark side. I could keep bad things away with my positive attitude and if I stayed cheerful enough, keeping the light in my heart, I would manifest only the best in my life and live on that higher plane of existence. I admit it, I am a romantic. A sucker for  “and they all lived happily ever after”. But this idea brought to the forefront of my mind the question, why have these seemingly really sh#tty things happened to hopeful, positive, enthusiastic me? To innocent Michael? To some of our dearest friends who are absolutely angels on earth?  The passing of two more of these beautiful souls in the last weeks? No answers as to why, but there is a belief, now, more than ever, that the opposing force is real. You cannot have one without the other. Every time we celebrate, we mourn something, or someone, else. Every time we mourn, we seem to find a reason to celebrate. I don’t want to risk boring you, repeating myself over and over, but the truly tragic events always bring up questions and not very many answers. We just do not know. So not only balance, but also acceptance is our common theme now.  And, at least for us, for Michael and this mom, there is always beauty in pain. 

The beauty today, Michael and I are home. On Thanksgiving. It is the first holiday that Michael has not been admitted to the hospital in 3 years. We were there yesterday. We will be there tomorrow, but today, we are home. The gastroparesis (paralyzed GI) will keep Michael from eating the traditional turkey dinner with all those rich, delicious home cooked side dishes. “Cheating” from his diet is not really an option for Michael. Straying from the few foods that he can digest would be self inflicted torture. He would wind up sick and in pain, so why even tempt fate?  It sounds like this goes against one of our life lessons of seizing the day, but there are exceptions to every rule.  Being home, it is enough. It is huge. I was not sure we would ever have a holiday together at home again. So we do not need a big dinner, and we do not need to be told to be thankful. We have gratitude for life in abundance. Overflowing, I would say.

This past month Michael’s liver has improved ever so slightly. Still 4 days a week at the hospital, that is the price right now, but the gift is his life. His AVN (avascular necrosis, death of bone tissue) has somehow gotten worse, even though he is off the dreaded prednisone. The bone in his knee continues to collapse and the AVN in his elbow now keeps him from lifting weights…. The worst part, without replacing his knee and the bone in his arm, he will never surf again. Sadly, the elbow surgery is not practiced in America, but we have hopes for a future trip to Canada, a fun road trip possibly, in a few years, when his ECP treatment is less frequent. We will deal with that at a different time. Not today. For now we know that the ECP for his chronic GVHD will continue for a while. So, it gives us time to evolve more, to become better humans. To share this story of hope and love and connection and gratitude and healing and beauty and on and on…..

As for Michael, some days it seems easy, other days he longs to be a normal kid. But not really. I know this will sound totally crazy, but given the choice, both Michael and I would not have changed this journey. We do not have regrets. There it is, acceptance. Because these 2.5 years have made us who we are. Maybe I really AM boring and repeating myself a thousand times, but these chats I have with you are also for me, of course. Reminding myself of how much I have grown and changed. Hopefully for the better. Reminding myself of how much I do have to be grateful for.

As always I will end with so much love for you all. We would not be here without you. The balance of the hardship has been the true friendships…. you……..

with all of my love

ashlee

3 Comments

  1. Anna Scaini says:

    Thank you Ashlee for being so open and honest with what your feeling. Your positive attitude and energy is a constant reminder for me and how I was perhaps in a dark place and chose to stay there for a long time during Stefano’s cancer treatment. I no longer approach my son’s cancer with anger, pain and confusion. Seeing you and Micheal together on TikTok and hearing your story on podcasts is your gift to everyone who is living with cancer. I for one, am so grateful to have met you both and for shining a bright light of hope in my life. Love u too 💜

    Like

    1. Anna! Oh you are truly too kind…… we are so blessed by a lot of love, we always feel such a strong purpose to give it back, as much as we can…… after speaking with you, I could feel your love and warmth and energy. Cancer is truly such an insane story- and so different for everyone. The common thread that I see, it changes us forever…. I think (hope!) for the better! I know we hardly know each other but I do truly feel bonded with you and love you….. sending you the biggest of hugs

      Like

      1. Anna Scaini says:

        Love u too! Hugs to you and Micheal

        Like

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