Today on the unit we had a conversation with one of the staff who mentioned his disgust about the habits of certain folks who live in their parked cars on city streets near the VA hospital. He lamented the loss of libraries to homeless people with lice, his formerly clean city to one of trash and homeless encampments, and paying property taxes while the aforementioned don’t. What to do. I have had many lively and interesting conversations with him before. He is an educated, white male professional. I like him.
I was irritated and a bit combative – privileged, fragile white people really piss me off these days. Ah, but wait! Am I one too? I dunno it’s demoralizing these days in the land of Trump, oceans of refugees from Syria, elsewhere (yes, some of them are, or will be, extremists) and seeing so many disabled vets at the hospital. A lot of misery.
I told my friend whose here with me in Seattle that I am glad to have left the bubble of Fort Collins where streets are clean, people are mostly educated and white, and the homeless population irritates the hell out of the business owners in Old Town. If I’m honest though, the illusion of safety and familiarity calls at times.
It’s a rough and tumble world at times but my self-imposed separateness is no longer an option for me. I’m no hero I just want to live authentically. To follow, as much as possible, the instruction of the late Stephen Levine, to live each year, day, as if it might be my last.
Yesterday our cab driver brightened our day with music and his lively chit-chat. Later, we wondered if he was high, an unfortunate suspicion that I decided to reject. What if he really was just as he appeared?
He asked what music we would like and went through a list that I joked with him about saying “You’re profiling us!” when he mentioned Don Henley, Tom Petty, etc. Not that I don’t like either of them, it was just funny that maybe he thought two older white ladies would like that type of music.
He played some of his favs, sang, philosophized about what heals us – he said “only time and music” take away pain. I heartily agreed with him! This was also the day the amazing being named David Bowie died. I listened to a Bowie mix much of the day and rediscovered his genius. His death reminded me of our own impermanence once again.
The cabbie said he wanted to be a singer and I suggested he make a video singing while driving his cab and upload it to YouTube. Maybe he’ll be discovered and be able to live while he creates. Artists are essential to life, to freedom, and to fostering our human connections. I’m so grateful for their contributions to our world.
Sometimes I just want someone to ask me how I feel. I know people care about me but I think they forget to ask this question.
So I’ll answer it here. Even though my counts are up and so far no serious side effects, infection, or rejection has occurred, my body has become rather a stranger to me once again. I am chilled most of the time and more so when I drink fluids and receive IV fluids. I think it’s also a function of my suppressed immune system and the medications. So I try to drink only room temperature or warm water and other drinks. I’m always covered in multiple layers and a cap, even inside. The thermostat is set at 75 – I’ve never needed such a high indoor temperature.
What does it feel like? The shivering makes my muscles tense especially in my back and it aches much of the time. I do stretches daily and that helps.
The other side effect are my swollen feet and legs. My whole body is bloated but my swollen feet and legs affect me the most. I am wearing compression hose which help and I elevate my feet a couple times a day but I can’t walk much because my feet get so sore. I bought cheap maryjane shoes with a Velcro strap and they are the only shoes I can wear. I’m clumsy and slow and have to force myself to move about.
The weather has improved some, less rain, a bit more sun. However, the isolation that comes with decreased mobility, frequent meds and endless fliud intake and output, makes it difficult to go anywhere. We don’t have a car so it’s either walking or the hotel shuttle. Add in that I’m restricted from crowds and it is a challenge to keep the four walls from closing in. I feel quite claustrophobic at times and experience anxiety related to this cloistered routine.
I’ll get through it but it’s hard sometimes.
Recently one of our cabbies described himself to us this way. He was a jokester, gospel singer, and mad conversationalist. He said “Ask me anything.” So we did. He was born in Ethiopa but ‘re-born’ as a Christian in England and said he’s actually Irish. His mellow tenor, in both English and his native language, was pleasant to the ear. His driving was pretty good too.
I’m doing really well. My counts are climbing, still a bit of renal insufficiency due to all the meds, cyclosporine being the main culprit. The response is to drink three liters a day. It’s hard to do. My legs and feet are quite swollen which makes it difficult to walk much but I am supplementing my exercise by using the exercise equipment at the hotel. I’m also getting IV fluids daily which we can do at the hotel on our days off. In fact, the doc gave us the whole weekend off which is a good sign of progress. And next week we start going just three days a week. All good news.
One of the workers at the hotel just came out ( I’m sunning out on the front patio bundled up in my hat and coat with my face away from the sun) pushing a laundry cart and singing. Music to my ears, heart and soul. I NEED music!
I have been wanting to write for a bit now but felt pretty crappy since the transplant on December 18th. Mind you, crappy, not horrible – fatigue, slight nausea and minimal GI upset. I was officially neutropenic for only a few days and my AGRAN, a lab that is a combined measurement of different types of white blood cells, is rising daily. I must still avoid crowds and take precautions to avoid contracting infections. Today I feel quite good.
It’s good that our memories, at least mine, are short. The actual transfusion was a bit challenging as I developed severe chills that I likened to the prolonged discomfort of contractions in childbirth. They were very intense and finally relieved by Benadryl. My nurse, Angie, a Chinese-American, was so great. She was tender, efficient, funny, and smart. I loved the sound of her saying “totally” the ubiquitous valley-girl term that will now also be a sweet reminder of her. I think patients tend to bond with their professional care providers especially around difficult treatments. Having Chris there to gently rub my leg and Therese, Zoe, and Shelby in the room was very comforting.
I will likely always associate the gray Seattle winter weather with this experience. It was the second rainiest December on record and pretty relentless. Hard on the spirits. This week is predicted to be sunny but cool and I’m so happy to see the sun.
Today we walked to the Spice King for lunch (don’t tell my doc) and had fantastic Indian food. While waiting for our food a man and his tiny toddler son, whose name we learned is Jack, came in. Jack is my all time favorite boy’s name. We had a sweet exchange and were the recipients of the most glorious smiles from this little blond Hobbitt-boy. There was also a child at a nearby table, East Indian I think, who reminded me of my most precious grandson. Later, I found a tin of Turkish coffee in the attached market and happily purchased it for later use in the ‘cezve’ Colleen gave me when she introduced me to this delight a few years ago.
The interweaving of good days and bad days in this extraordinary and often mundane experience is my current reality. I can’t help but think that but for the hardships of recent years I would not be so excited about grandchildren, feathering a new nest, living in the world more fully, and savoring the inner life I’ve been cultivating.
I’m cleared for takeoff! I’ll start my conditioning treatment – three days of chemo and one dose of radiation – on Monday. Chris arrived bearing gifts from the island. Makiko and Sakura made an incredible hanging mobile of sorts, long strands of cranes, 300 to be exact, with little notes from each of them attached at the top. It is incredibly beautiful and thoughtful – a treasure for sure.
Last week whilst at the VA a man got on the elevator with us and we all noticed that his ear was stitched on with rather wide basting-like stitches. It reminded me of the stitching used to tie up a Thanksgiving turkey after it’s stuffed. Poor guy. There are many, many people we see at the VA everyday with all manner of physical and mostly unseen, mental, infirmities.
Had a sobering informed consent conference with Dr. Wu. It always sets me back a bit. He gave me two good journal articles specific to ALL and the reduced conditioning procedure I’ll have. There is not a lot of research on this rare and formerly deadly disease. It is only in the last 15 years, since the advent of tyrokinase inhibitors (TKIs), that survival rates have drastically improved. Many positives including: I am in my first complete remission (FCR), on a TKI, in good health, and have a 100% matched related donor. So my odds be good. Praise Allah.
I just finished On The Move by Oliver Sacks. He’s the prolific neurologist-writer of Awakenings fame. Usually when I finish a book I have another in waiting so as not to be without a good read. I wanted to savor this one a bit though, a habit I am cultivating generally.
This guy wrote a lot – he couldn’t help himself. I have never been a Writer, nor do I consider myself to be one now. Don wrote, he was a writer of journals, songs, short stories, and his magnum opus “Dean Spreggs.” He only wanted to write, make music, and came to loathe the work-a-day world in which he lived.
Oliver Sacks writes at the intersection between science, i.e., clinical practice, research, and literary narrative. The book was quite engaging and inspires me to read more ‘hard’ science about brain function, a subject I was interested in professionally in what seems like a past life.
During this strange, difficult, and sometimes rich time ‘On Hold’ here in the Pacific Northwest, I get excited about reading, learning, and even (again inspired by Mr. Sacks in On the Move) to learn to play piano. Even as I write that aspiration, I’m doubtful of my ability to set myself to the task.
This time, right now, is both excruciatingly pregnant and intermittently bold and bright. Dim and dull, then shimmering sweet. This is how it feels.
Here it is November 23 a few days before Thanksgiving and no transplant. The BMTU is in isolation mode because there has been a respiratory virus circulating among patients. A virus (parainfluenza) can be serious or even fatal for immunosuppressed folks. I thought I had escaped it but came down with a pretty run-of-the-mill cold last week. It has mostly passed and I am feeling well.
I am inclined to record these events, to write, but there is a part of me that wonders why. I mean, I guess there doesn’t have to be a reason. I am self-conscious about producing another ‘cancer story.’ This doesn’t mean I haven’t benefited greatly from others sharing their stories or even that I don’t feel I have anything ‘significant’ to say. It’s just that many, many people live and die with cancer and I resist indulging in an ego based exercise that feels inauthentic and well, cheesy. That’s just me.
So what do I have to say? I am truly, surprisingly, grateful for the way my life is unfolding. I claim many of the benefits others report: being much more grateful for the small stuff, slowing down, making good friends – such a joy – and rolling along with the pain and sometimes bitterness of the inevitable disappoints in life.
In recent weeks I have been struck by an awareness of losing, sort of shedding, my sense of ‘self’ as separate from the world and it’s inhabitants. No huge epiphany or revelations just a deeper, but lighter, sense of being. Loosening up I spose. Mostly I feel great tenderness and massive love for my two kids, grandson, and sister Therese. Other friends and family are so dear to me it kinda breaks my heart. I am profoundly indebted to all the teachers in my life, especially my Buddhist influences, Pema Chodron, Tara Brach and many others.
Non-selfing is where it’s at dude.
The mere mention of the word “fire” creates panic. Well, guess who triggered the smoke alarm in the 4th floor unit here at the hotel today? Yeah, me, burnin’ a stick of incense. A few minutes earlier I’d thought “I better make sure this doesn’t trigger the smoke alarm.” Duh. Loud screeching alarm, fire trucks, (luckily they are only a few blocks away) and me, totally embarrassed. I apologized all over the place and then walked to Wal-Mart. It’s the only retail store within walking distance.
Still chagrined, I trudge back from shopping with a full back-pack and heavy sack full of bottled water. But mostly I think “oh well, stuff happens,” and I am proud of myself for walking to the store and handling my business. It has been tempting, but only briefly, to fall prey to “learned helplessness” the last few years as I’ve sustained one loss, then another. One of my credos ‘we teach people how to treat us” – for better or worse – often comes to mind.
Nonetheless, horrifying to witness your husband disintegrate psychologically and complete suicide on his fifth attempt, then get cancer and almost die yourself. “Jaw-dropping” as my daughter once described it. A series of dreadful traumas from which I am recovering and which force a reconstruction of both my memories of my life and the trajectory of its future. I often reflect that millions of my brethren here on the planet have and will sustain incomprehensible pain and suffering and mine is no more and less than theirs. So no, I don’t spend a lot of time in “why me?” although the raw heartache and reverberation of my husband’s shattered life linger coming up on the second anniversary of his death.
Sometimes it feels like it’s not real, people often say that right? So what else do you do but keep walking; sometimes to Wal-mart, sometimes down a sun-dappled, aspen covered mountain trail, sometimes down a rain-soaked street in a city you’ve never been to before, and sometimes down hospital corridors where the VA proclaims on signs “The price of freedom is seen here.”
Dental exam and cleaning by the gentlest dentist I’ve ever had. Blood draws, antibiotics to prevent infection due to the dental work, then my first ’rounds’ with the full transplant team led by yes, “Dr. Grimm.” No go date yet, likely mid-November. Piece of cake.
Not so fast. Vicodin , lorazepam, and lidocaine barely touch the intense pressure and pain I experience from the bone marrow biopsy. I breathe, gasp, writhe, and call out, some tears escape. Fuck, it hurts. I’m feeling pretty alone and sorry for myself. Nauseous and light headed from the meds, I doze for over an hour then have to head to my next appointment. I perform pulmonary function tests feeling like I’m gonna barf any minute.
I wobble home and Chris helps me with some tea and toast and a bit of solid food. I sure am glad he was here. He leaves tomorrow evening just in time to be home with his kids for Halloween.
The inscription on the card I got in my comfort bag says “Strength does not come from physical capacity, it comes from indomitable will.” Another pearl I came across today while waitin in the cramped family room on the unit was this sweet poem tacked on the wall, author unknown to me: