As many of you know, my worst fears were realized on September 21st. My leukemia is back and I need a bone marrow or stem cell transplant to have a chance at living through the next year. After just over a year of remission, I received that life altering phone call and well, here we go again.
Remission always haunted me because you have something to lose. Being in active treatment, my brain recognizes it as being the cornered animal when the only choice you have is to fight like heck or die. And perhaps mentally I thrive with having nothing to lose (well, everything to lose but also everything to gain) versus sitting around praying something sticks.
From that phone call to hospital admission I had about 72 hours to process my emotions, tell our family and tell our kids. To plan backup help from friends and neighbors, squeeze in a high and low filled family day and pack for a 4-6 week stay at UCSD La Jolla for another induction chemotherapy in the hopes of remission.
If remission is achieved the next step is another 4-6 week stay for heavy chemo from which my bone marrow would never recover and a stem cell transplant. A process that resulted in the quick death of my father in law at City of Hope a few years back, so you can imagine the amount of trauma and fear surrounding this for both Craig and I.
After a week of chemo, I waited for the bottom to fall out like last time. For neuotropenic fevers, for infections, for feeling like death in which the days fly by as you barely live through what feels like the worst flu ever, but even worse. Except, it didn’t go that way this time around. Thank goodness.
After two days of feeling tired I resumed my “normal” routine of walking miles around the hallways, getting lost in books and indulging in far too much reality TV. As the news spread amongst our friends and my followers the sweet messages came pouring in. What can we do? How can we help? What can we send? And aside from our family and close neighbors who are actively helping take care of our children, our dog and our home, I found myself telling everyone we needed nothing.
But once again, it stands true that this same state of being doesn’t apply to everyone in my situation. Or actually most in my situation. Our family is in the minority here. And that makes my heart ache. It’s hard enough to go through this with an amazing support system like Craig and I are so lucky to have.
To go through it with little to no support or constant financial worry is a stress that I cannot fathom but recognize is a reality for many. Too many of the people I have come to consider “my people” these last couple of years.So as I sadly cancelled work projects that had been in the making for months, I knew I needed something more. A purpose. To not just sit here and try not to die (although not dying is without question my top goal!) but to actually live and make the most of the uncertain amount of time I’ve been granted here.
It only took me a few hours to realize that I could spend my time taking the overwhelming, lovely support our family was receiving and figure out how to more equally distribute it to others. To my people of the bone marrow transplant floor otherwise known as the BMT floor here at UCSD. A floor known for amazing care but often grim diagnoses and the toughest of treatments in this hospital. While many of us have differing opinions about distributions of monetary wealth, I think most of us can agree that humanity tends to benefit from a wide distribution of kindness, love and caring.
After consulting some of the nurses who had kept me alive, taught me how to play defense with my health and shown me how selfless they can be, we had a plan. We had a list they compiled of the very basics patients needed to feel more comfortable and at home during their often very long stays.
Naturally, I had my own list to add. I wanted to do better than just the essentials. If you have to go through things like this, you deserve more than the minimum. You deserve to be doted on, motivated and empowered. You deserve to know that people both within and beyond these walls care for and are invested in you. Because for me, that might just be part of the reason I am still here, humanity. Unconditional caring and kindness from near and far. There is no question that this factors into patient survival.
I added items I thought would keep patients comfortable and mentally active, even if they were bedridden. I spent more time than I want to admit searching for items to help parents and grandparents still feel like they could be parents and grandparents to the little people in their lives. I searched for games patient families could play together that could be wiped down to avoid spread of infection. There is no place more paranoid about germs than this place. I looked for toys and activities to keep visiting children comforted and busy.
And then, we built a list. An easy Amazon wishlist. Where anyone from anywhere in the world could send something that spoke to them to those who had so much to gain from it. I asked one of the nurses if we were prepared to receive donations. Where would they go? She said let’s create a problem and figure out how to solve it. And at those words my still remaining eyebrows raised and my ears perked up. Challenge accepted.
I explained what we were doing and shared this list in my Instagram Stories. To say my Instagram family sprung to action is the understatement of the century. I didn’t sleep much that first night as things disappeared off the list, snapped up like televisions on Black Friday. It was unquestionably a holiday miracle for the BMT. There were warm blankets to keep patients cozy at night. Ear plugs and eye masks to help with sleep, a rare resource in hospital life. Beanies for the moment hair loss inevitably strikes. Adult coloring books, Sudoku and crossword puzzles to keep minds sharp or find a distraction from a diagnosis.
Mess free coloring, stickers, LEGOS and a ton of stuffed animals for kids. Games galore for families young and old. Toy doctors kits to let young visitors be their parent or grandparent’s doctor in training.
A day or two later I explained to my Facebook community what had transpired over the last couple of weeks and briefly filled them in on our BMT kindness project. My blogger friends and even perfect strangers went out of their way to share my story and this mission. I started receiving messages that the list was down to next to nothing and could I please refill it? Shock. Tears of joy. Tears of restored faith in the kindness of humanity at a time when we often question where the world is going.
Then we crashed the Amazon wishlist and Amazon didn’t know how to fix it. For real. So a new list was made. The packages started showing up en masse. Hundreds of packages. So many that delivery drivers started leaving industrial bins on our doorstep rather than 89 loose packages at a time. I know because I opened every single one myself in this hospital room while donning a mask and gloves. Poor Craig knows because he transported all of them there.
I read every single note that came in those packages and saved them. They filled a bucket, literally and figuratively. I expected a pile of things and receipts. But I did not expect a pile of heartfelt notes, encouraging words and expressions of thanks. Thanks for being able to do something. Thanks for allowing them to help others. I couldn’t believe it. They were the ones deserving the thanks, not me!
A friend recently asked me how I get through these things. I’ve had several long hospitalizations and have spent the last two years of my life mostly fighting a ridiculously aggressive form of cancer. I think my answer is this. One, you have no choice, right? You either give up and die or deal with it. Two, no matter what is happening in your life, no matter how bad it is, there are ALWAYS others not too far from you going through worse with less resources. The best and most empowering medicine is figuring out what you can do for them.
