The only checkpoint of fame that I know of was Checkpoint Charlie, so I looked up the meaning before naming this blog entry.
a barrier or manned entrance, typically at a border, where travelers are subject to security checks;
a place along the route of a long-distance race where the time for each competitor is recorded.
a location whose exact position can be verified visually or electronically, used by pilots to aid navigation.
Somehow Checkpoint SCCA seems symbolically perfect for last week’s adventure. It marks the border of leaving cancer, the route where my long distance race is recorded, informing the chart that is me when I am at SCCA. From this chart the doctors, (pilots) verify the presence or absence of leukemia, GVHD, CMV, and the health of renal and liver function in my body.
It took a week to go down to Seattle and do the tests, one after the other, another week to process the experience before I could talk about it. Perhaps it’s aging … or increased sensitivity … but I’ve noticed the pattern of trauma, especially subtle trauma, looks like this: Powering through the event. Taking the shocked self home. Repairing and nurturing the inner body back to wholeness.
By 11:30 AM Monday, I had already had the critical in-depth blood draws, and a bone density scan, important since prednisone can have long lasting effects on bone health. My skin really got the scrutiny on the first consultation, as they looked for GVHD like rescue dogs searching out an important scent.
Then came the biopsy. I had asked for sedation, envisioning an effect much like the colonoscopy. You know: mid-sentence . . . konk out. Wake up when it’s done. No such luck. There are many wonderful things about the SCCA. Pain management isn’t one of them. Apparently there’s a cap on how much sedation you can have—which perhaps typically is just below the threshold of truly sedating the person. You might guess the result—still hurt like hell.
Afterwards, I walked around Green Lake, gulping in breaths of normalcy and fighting back the waves of memories as I drove around familiar neighborhoods. A feeling of loneliness filled the car, of a time when Isolation was the operative description; when it wasn’t safe to be out, and there was no energy or desire for it anyway . . . . so many hours spent in seclusion. Thankfulness followed the lonesome songs playing in my heart, for all the bighearted time given to me by each member of my family.
On Tuesday, I went in for a routine mammogram. We all know what this is, right? This is where the technician grabs your bare breast, yanks it under the mashing plates, then squeezes them together tight while you hold your breath and try to stand still. Millions of women do this. Hardly ever hear a complaint. It’s amazing.
My week in Seattle mixed the funny intense “shopping opportunities” of an islander suddenly presented with the limitless choices of the big city, together with the shudder and satisfaction of negotiating city traffic. Despite the waves of immense loneliness in the thick of so much humanity and activity, I was able to let go and enter the river, finding pleasure in being part of the human parade at Greenlake, the waiting rooms of SCCA and UW Hospital, even at REI and the Mall. When I needed them, the islands of warmth and hominess appeared, a welcoming word from a barista, a salesperson who wanted me to find the best hiking shoes for my escapades, an ER Nurse who used a warm pack make an IV injection nearly painless. Each evening after ups and downs of being in Seattle again I needed sanctuary, and received just that from generous friends.
I made three visits to the Apple Store to get my I-tunes and I-photo straightened out. Love/hate that place. It is an extreme immersion into a technology that threatens to overtake our lives but also makes it more enjoyable. I am not a Luddite. I kind of love my cell phone. Please don’t judge me by that. At least I admit it. It used to be if you were over twenty and walked in to get help on your computer, the young male techies would treat you like a doddering fool they could hardly stand to be around. What I saw in the Apple Store wasn’t like that. It gave me a needed diversion from the SCCA.
On Wednesday, first up was a consultation with Infectious disease how to deal with CMV. This reactivated virus has had its way with me. After all of this time dealing with it, it still hovers around me like a dark shadow. They decided to take me off the CMV medication to see what happens. It was a sobering visit, but so far so good: the virus is detectable in my system but not threatening.
Next up was Pulmonary function. I hate this test and found I was in good company. The technician told me that people have told her they hate it more than the bone marrow biopsy. I can’t say that but it gives you an idea of the general aversion for it. The test mostly consists of blowing into a tube with nose clips on, holding breath, letting go, then deep breath—all of this accompanied with the technician’s expressive conducting. “Now breathe in! All the way all the all the way . . . EE EEE! And now let it out further further further deeper deeper!” This was made a bit easier by the creative animation of bowling balls—hey, when you are blowing and holding and inhaling, trying to get the pins down by an elongated breath at least distracts in a good way.
On the digital chart in front of us, she confirmed my details. “And your ethnicity?” She drew a line down the possible options. I felt my jaw set. “Is there a place for ‘other’”? I asked. There wasn’t. “Well, can you write in Mexican Scottish?” Without any hint of irony, she did. Every time I was finished huffing and puffing my digital chart would come up. And every time “Mexican Scottish” made me smile. My father Robert Bruce Weston and grandparents Marian Cathro and Roy Weston would not have recognized being Hispanic, whatever that is. I could have asked for Scottish-Irish-English and Spanish-Native American-French. I just can’t lump these nationalities in one easy package. I am reminded again about phenotypes and genotypes. Phenotypes are what you look like. Genotypes are what you really are. Those of us who look predominately more like one parent than the other must fight to keep the invisible parent in their heritage. I know how Obama must feel.
By Thursday, Steve had arrived to make a visit of his own, to the Seattle Arthritis Clinic. We went together to visit our first oncologist, Dr. Walter. He was the attending when I first arrived at UW Hospital. It was my lucky fortune to have him arbitrarily assigned to me back in those dark days. I don’t know if it’s cause he’s Swiss or wears bow ties or that he is never ever pompous, not even a little, but we both really wanted to see him again, and just get his read on it all. We learned that the drug Dasatinib will be in my life for as long as my insurance will pay for it. The tests go two years out. After that, it’s unknown, and I will continue to be the human guinea pig for finding out.
With the stem cell transplant, I lost the protection from all my childhood vaccinations. My one-year anniversary was the time to get the immunizations once again. Within the space of five minutes, I got 8 shots, given in arms, thighs, and hips. two different types of flu shots, Hepatitis A and B, meningitis, polio, pneumonia, and “Tdap” (tetanus, diphtheria, pertussis). Ouch. I was sore for many days after.
Finally, it was time for my final consultation. Drum Roll. “9 out of 10 positive news”. The bone marrow biopsy and specialized blood work shows no sign of leukemia. It’s 100% donor origin. My immune system is 100% Mariya’s. There’s no Graft vs. Host disease. The lethal Philadelphia Chromosome was no where to be found. Celebration! Daughter Elena asked me if I was a miracle. No, I said–I was tough. I had amazing support. And it was the right time and the right place. That was the miracle.
And . . . the bad news… ? Of course, like a report card, you linger more on the one “C” than the “A+”. The old foe, CMV. Once re-activated, it just won’t go easily back into the stable. Most people with healthy immune systems spend 70% of its energy keeping CMV down. So, we are still watching to see what we have to do. And my kidneys have been spilling a significant amount protein into urine. Protein is the holder for fluids in the body, amongst other things. Protein spills like that lead to things like heart effusions. “Probably from medications” or “Maybe from the diabetes” brought on by the prednisone. This is unsettling news. But there is nothing to be done other than to live a kidney-healthy life. And hope that I can stay away from harsh medicines.
Every year the Fred Hutchinson Cancer Research Center sends out a questionnaire as part of their Long Term Follow-Up Program. They then send out the Thoughts and Comments for each year. It is rather astonishing to read about other people’s experience with stem cell transplants. Some go through the hard times and come out healthy and sunny. Many don’t. It is, in fact, a sobering document. Since my records preceded and followed me everywhere I went, I had comments from providers like “oh! You look better than I thought you would, after reading your chart.” I had a long hard march, but in the scheme of things, I just feel lucky, lucky, lucky. It could have been so much worse. It was so much worse for many.
I’ll end with my favorite quote from that document, from a transplant survivor the same age as me.
“Being diagnosed with cancer of the blood was not in my life plan, and to be honest, it stinks being a cancer patient. Being a cancer survivor is something else altogether. Like Dr. Seuss said, “oh the places you’ll go and the people you’ll meet.”
Now that’s something I am looking forward to.
And from Enya, the music that accompanied my Seattle driving.
Who can say where the road goes
Where the day flows, only time
And who can say if your love grows
As your heart chose, only time
Who can say why your heart sighs
As your love flies, only time
And who can say why your heart cries
When your love lies, only time…