We are home. And all that means…. from ashlee

The last few weeks have been like yet another new beginning.  I know that sounds cliche.  The words are commonplace, perhaps, but the events feel so much bigger.  After 5 months of fundamentally living in the hospital, at long last, 3 weeks ago, we came home.  It seems like coming home should be returning to the comfortable.  Easier.  After all, when we say “home”, it does not mean a place, because places change.  Cozy cottages are exchanged for bigger ones and sometimes roomy houses are given up for more affordable apartments. No, home is not where you live, but instead it is a state of mind. A state of heart. A state of soul.  Home is the familiar. Home is safe. And the phrase “coming home” is like rays of sun shining through the clouds. Hopeful.  Warm. Comforting. Family.  I write these words because that is how I view home… how I viewed home.  But this homecoming was different.  It was not like coming home after the multiple 5-day chemo admissions.  Not like coming home after the 7-day “he’s-got-a-fever” admissions.  Different from the home coming after the 6-week Bone Marrow Transplant admission.  Different from all the other times we spent days and nights in the 6th tower and returned home.  This time coming home was foreign.  Almost alien.  And very intimidating.  We had been through so much. We were too changed. I think part of it was the amount of time we had spent in the hospital.  We used to say that the outpatient, infusion unit at Nicklaus was our home away from home. Then, last year the 6th tower became our 2nd home.  We said this fondly and with so much love!  The doctors, nurses, residents, employees, the humans that work at Nicklaus are family. We have spent more time with them than many families spend together. But even so, at the end of the day (or at the end of a shift) they leave their jobs, the jobs that they love, and they go home to their own people. They go to their safe, comfortable place where they do not clock in or out.  Whatever that is for them.  And we would stay another day, another shift.  And during those days and weeks and months, Michael went through so many evolutions.  He scared most of the doctors and residents into thinking he might not make it. More than once.  I denied it, but sometimes, very, very, very late at night, when no one was looking, when I was wide awake, NOT from a nurse taking vitals on my son, my pillow would suddenly be very wet with my own hot tears of fear.  The fears I did not want to share with my family, the hospital staff, my children, especially Michael.  The fears that could manifest into something I did not want on my shoulders.  In those months Michael went through new medications, old medications, higher doses of past medications, costly infusions, tubes inserted into his gallbladder, liver, abdomen. Surgery. He had PT to help him walk, IV fluids to keep him hydrated, NG tubes to help him eat, drugs to help him sleep. We were, he was, dependent on the 6th tower for survival. It was a complicated 5 months, full of our forward and back “cha-cha” steps. Lots of backwards steps. And at one point, the backwards was too far.  Too far for Michael.  For the first time in this cancer/bmt/gvhd journey, he could not quite get his footing.  And he lost hope. It was so dark and my singing, dancing, holding, hugging, talking, silence, love, love, and limitless mother love could not bring light to his eyes. But then we had a kind of revelation.  And made decisions about that overused expression: Quality of Life.  And Michael found hope again.  And that is what coming home has been.  Hope for life. Not coming home because he is healed, although he is so much better.  But coming home to FIND home. To figure out how we can be at home, how we can have a life with quality, after everything this 20 year old man/child has been through, has experienced, has had nightmares about, has survived.  Home to heal and find hope.  We still have to balance on that tightrope every day to make it through the most simple tasks, things most of us take for granted.  Things like walking. Sleeping. Eating. Relaxing. The eating part has certainly been difficult.  Food is tied to everything!  Not only pleasure, because food is social and food is comfort. But for energy, for survival, you need to eat.  To heal, you need to eat. To sleep better, to recover, to rebuild muscle, to focus, to calm, it goes on and on, food and nutrition are key. I was raised in a family with quite a famous health expert as the matriarch.  So we understand nutrition and we do our best. But GI is complex and eating has not been the fun family event we remember from days gone by. We try not to think too much about my 6’1 son weighing 118 lbs. The doctors are happy he is not still losing weight.  We joked when we were discharged from Nicklaus that it was the hospital food making him so skinny.  Hmmmm.  I think I take that back.  Part of our “quality-of-life-pact” was to eat more of what he loves…. So far, his stomach is not on board.  Too many of the foods he loves (and yes, they are healthy choices!) are not loved by his digestive system. But we know, we are told over and over, it will take time. Oh right, patience.  The favorite word of every cancer/bmt patient (said none of them ever!).  But yes, we are exercising patience, going with what he can handle, packing in the nutrients where we can. Wanting to break some rules, wanting to ENJOY food, but well, not quite yet.  Another big piece to our pursuit of quality of life has been returning to the beach.  For my surfer kid, getting his toes in the sand, his hair blowing in the ocean breeze, his body wet in the salt water, hearing the waves crash, watching the clouds change color as the sun sets, these were, and are, part of life and living.  We thought we would go home and say f*#k it!  Let’s go jump in the ocean!  But it is not that simple, either.  His legs and knees are so fragile from past steroids, from AVN, from being in bed, from losing so much weight, that just walking from the car to the beach is an all-consuming effort. Trudging through the sand is a full on work out. Avoiding the peak of the UV rays from the sun, which can still cause a flare up of skin GVHD, we go in the early evening. And little by little, day by day, we have made it closer and closer to where the sand and ocean collide, and finally, even as far as getting our knees splashed at the seashore. Full body immersion, not quite yet.  As Michael gets stronger, he will have the force to stand in the moving tide and shifting sand, and soon, I know he will swim in the salty water.  But it is a slow process.  Not what we expected.  And then there is the simple anxiety of all he has been through kind of hitting him now. Realizing all that he has survived.  All that he has suffered.  It is like when you go, go, go, go for so long, then as soon as you stop and relax, you get a cold, or catch the flu.  Your body waited until you let your guard down, then it caught you and infected you!  It’s similar to the mental process.  He has been so strong for so long. When it was fight or flight, he fought. But now that he is at peace, trying to heal, to recover, his mind is processing the last, almost 2 years, of non-stop, unrelenting, battle to survive. And that is a lot to grasp. For me. For the family. For Michael. But we are home. Challenging, beautiful, difficult, enlightening.  Making us want to be better and making us want not only to survive, but to inspire. To evolve.  To be here for a reason.  Even with everything that has happened since his cancer diagnosis, we are still grateful.  Still alive.  Still able to smile, to dance, to rap! So now we aspire to be here for a purpose. Thank you for being our purpose.  For not abandoning us when it was so dark.  We see a little light right now and we share it with you. Those rays of sunshine coming through the clouds.like home. Comfort. Family.  Life.  We love you and are forever grateful.