This week I envy people who can cast dreams to the wind and know that one of them is going to blow back their way, maybe. Maybe not. It is the uncertainty…the possibility that one will. Better odds than the lottery, more likely than a random crime striking.
Yesterday was much like many of the days I have experienced since October. I hadn’t realized how long it really was…the reality of how many days just hadn’t occurred to me. It’s been 86 days since my husband called from his hotel room outside of Boston, complaining of not being able to sleep. The beginning weeks of October, I still had dreams of going back to school, finding a better school for our daughter-a school that would recover maybe one of her dreams….no easy task for a non verbal, epileptic, drooling, smiling teenager. What do you think? She just wants to hang out with kids her own age. Boys would be half of that dream. Since October, her dreams have been reality shaved down to having her dad lie down in bed with her and laugh about the lamp that projects stars on the dark ceiling. She’d like to share a meal with him again. Dip french fries in ketchup and stop for slurpees and lotto tickets on Saturdays. Dreams now with uncertain tags attached to them.
We had a 5 year crossover plan….slow his career down and get mine going. All three of us were ready to fill in days, boring as they might be, hitting free museum nights and attending annual celebrations…marking anniversaries and making memories out of the ordinary.
Oh, the ordinary….I don’t even think I noticed when ordinary things became extraordinary. When everytime I perform some housecleaning duty, I think I should sorting and tossing 2/3 of what we have left. I think we should be portable for the next stage that coming. The reality is now a checkpoint that pops up out of the earth. It holds a basket asking for every current task list, hope and dream to be deposited and spits out a new one, complete with ideas I had never considered and emotions that have never been tapped.
Hospital discharge is always a scary thing. When you’ve been inpatient for 5 or so days, you come to surrender to what you are fed, when you are allowed to shower, and when doctors wake you from much needed sleep to discuss very important things. Imagine your boss calling you before your morning alarm goes off and starting a conversation about 10 things that will be drastically different when you show up for work that day. You will nod and blink and retain very little. Doctors rearrange the drug lists….stop taking that , add this….when this happens, call and we’ll change that, too. Here’s your next 15 appointments (which always is not followed through and changes in a day or two). And the reminder to the cancer patient to ‘take care’. Yep, you, too.
Bright and early Monday morning, we swim the stream of cars headed to their work destinations…everyone lacking sleep and doing a poor job of navigating the lanes. “What is wrong with you people”, I ask outloud. I’m confident I have the most fragile passenger on the road. I have a task to fulfill…we have to be in the Amublatory Infusion Clinic in 15 minutes. There is always a stead flow of patients off the elevator. It’s an infusion clinic, everyone on the 7th floor has cancer. There are a lot of masks to guard against either letting a virus out or letting one in. Phones go off. To the North, traffic finds a quicker flow as the sun brightens the mountains in the distance. On a clear day, you can almost see a hiker in the hills in Cave Creek. You can definitely see the coke can the maintenance guy left on the half roof below. If you pay attention, you can solve the reality of how the desert looks so inviting between the towering hospital and the freeway a mile away. The reality is, there are workers out there sawing off branches and raking up weeds. It’s natural, all right. Really.
We are there for laboratory values. Think you’re feeling pretty good? Wondering when that chemo is gonna kick in? When the nurse reappears and tells you your platelets are low, you’ll know. Into a recliner and wait for platelets to come up from the blood bank. The obligatory conversation comes before the bag is hooked up. Like grace at the dinner table in a Norman Rockwell shot, thank you for these platelets, they will allow me to go downstairs to interventional radiology and have my spine infused with chemo that surges up to my brain, searching out lymphoma cells where ever they may hide. Thank you. The reality of being a cancer patient is understanding your body at the cellular level.
Infusion complete and we are visited by the Lymphoma and Leukemia Dr. She’s bright and cheery, and with reason. She wants to share the Stem Cell Transplant process with The Engineer. This has to be told in a certain way. An engineer must know exactly what to expect and there can not be one item left that hold an “if this, then” clause. A few weeks ago, we were thinking about the reality of chemotherapy every 4 weeks, until the end of summer 2015. Then, a large dose of radiation. Then, a few more years of an adapted chemo schedule. Without a stem cell donor, there was too great of a risk for the lymphoma to make a encore on stage. The first time around is workable. The second time is the kind of reality check you just don’t want to understand. There hadn’t been a donor, yet. The whole idea was illogical. How can a caucasian male not have a stem cell match when most of the registered potential donors are seemingly just like him? This day, with platelets dripping down an IV tube, there came a donor. A 21 year old woman in Poland! With the confidence of a Circus Ringmaster, she laid out the method to get those cells from Poland to the patient and transplanted, all in a 48 hour leap. In a few short weeks, he will be admitted (Feb 2) and started on a pretransplant regime of the worst chemo. ever. It will kill of 90% of his cells. He’ll feel really bad, she says. He’ll need IV nutrition. He’ll hurt and have IV pain medicines. We’ll watch him closely. He’ll be in the hospital for about 6 weeks. On the 12th, we’ll transplant the donor cells. That day is day 0.
Zero. A beginning? The beginning? Everything’s coming up roses after that, right? Well, sort of. We’ll look for the 30th day to be a time of signs showing he’s getting better, maybe feeling well enough to sit at a table and eat. Day 60, even better. Day 100 is a whoopin’ and hollerin’ time. The reality that he probably won’t be the same as he was before lymphoma came to visit, and the reality of him maybe not being able to recover his career as a System Engineer.
My job as a caregiver is a reality that can’t be set aside for dreams and wishes. It offers nothing in the way of financial compensation, infact it would seem the rest of the country would rather you did all this work for free, instead of asking for social assistance.
Reality checks in. It sticks around as long as it can. And like a bad dinner party guest, it doesn’t offer to help clean up. Life changes. I am useless with the ‘flow with it’ mantra. No, I have learned to battle gear up when I wake up. The day offers no guarantees of ordinary sameness. I will have to be nimble and able to turn on a dime. Like a dog moving sheep, I will need to be focused and dedicated to the unexpected.
Feeling grateful for all the experiences life has drug me through….our son’s cancer, our daughter’s disability, my mom’s brain cancer. I remember what was important then, it still applies. The world is kinder in many ways. Social media has given us a Fundme page made by our daughter. It has connected us to people in a thousand different ways. It has reminded others what we mean to them and it has reminded us of how others have reached forward in time…how could they have known we would need so much.
My cat has gone to live a lush retirement at my oldest, dearest friend’s house in the hills over Los Angeles. I am ok reducing our household to a manageable amount of things. There will be less to take care of, that’s a good thing. I’m looking for less expensive housing, to meet the financial change we are facing. The uncertainty of income is a very stressful factor. There are as many possibilities as there are problems, the trick I must remember is to pay attention and watch for them to appear. Waiting for possibilities to appear is an art.
This past year, we crossed paths (online, through the hafu community) with a young boy named Baylor. Baylor is half Japanese (mother) and half German (father). He has leukemia. And he needed a stem cell donor. There was never a match found, despite the multiple donor drives all over the SF area. Sweet boy, the suffering was so great and the need to reach out was equally as great. Some local friends got together and made paper cranes. In Japan, it is a tradition to make origami cranes and fold each one with a prayer(wish). The cranes would total a thousand and be strung together in a massive bunch. It’s colorful, full of love and hope. I know, because my cousin, Natsu, sent one for my mom when she was diagnosed with a glioblastoma in 2004. We cut one of the strands and offered a crane to those who attended her funeral service. I kept a yellow one. I sat visible in my kitchen, for that is a place mom and I could ‘hang out’ together. I sent that yellow crane to Baylor…with my best wishes for all good things. All good. Little would I know my husband would come back from his business trip with a massive lymphoma mass in his chest. The karma seemed to have circled back. The connection is a reality. Here’s a snapshot of Baylor https://www.facebook.com/photo.php?fbid=10206028237334571&set=a.3435724621446.2160192.1520371947&type=1&pnref=story.
There, in the lower right corner is the edge of my mom’s yellow crane and my wishes for Bay.
The reality of all it creeps in during the night hours. Much of it makes no sense at all and the wonder of the order of things will just drive me batty. The connectedness, though, sort of gives it form. When you snap on the outer edges, the center of it all feels the ripple, too. In that way, you need the reality in the spaces inbetween. Without it, there’d be no path to and from.