Monday, February 17, 2014

Hospitals and humility

I was discharged Friday after ten days in the hospital. Things finally got sorted out and I got a more appropriate diagnosis and treatment, but it is disheartening to find out just how much advocacy, knowledge and persistence it takes to get proper medical care. Having my father with me was invaluable and I am so grateful for his expertise and diligence. 

I am also grateful for Nu, a longtime friend of my sister-in-law’s who looked after Alder with caring and love during my absence. A neighbor told me her son asked Alder who Nu was and he replied, “She’s a Thai person and she loves me.” With the routine of kindergarten, nurture from Nu, nightly reading with my father, and playtime with local friends and neighbors, Alder continued to thrive while I was in the hospital.   

I was diagnosed with pericarditis, or inflammation of the sac around the heart. I’m not sure why I got it – it was probably something viral and I may be more susceptible to such things due to my cancer treatments – cardiotoxic chemo drugs and/or radiation therapy. I think I was also getting run down. Brian, who provided daily support and love for four months, returned to Juneau in January to work and I lost his protective care. My car died so I was walking a lot – eager to fend off the side effects of Letrozole and fight fatigue – but radiation was taking a cumulative toll. I wrote recently about the front of strength that often masks emotional vulnerability; I think in retrospect the same could be said of my physical  state.

In any case, the pericarditis was most likely exacerbated by the blood thinners I was given for the possible pulmonary embolism that showed up on a scan I half-wish had never been done. Three days of blood thinners was probably the biggest, but not the only, medical mishap that shook my faith in Swedish.  

I finally told my medical oncologist – whom I like and trust, but who isn’t always as available as I’d wish her to be – that I needed her. She really kicked in. She came in on her day off and helped us decide against surgery and for a less invasive procedure to remove pericardial fluid. She corralled one of the best cardiologists for me, and he proved adept, kind and devoted. She tracked down the CT scan and studied it with my father.

I’m glad to be home from the hospital but not exultant. I feel pretty weak; there is still some fluid around my heart and lungs and my blood is low in iron, protein and potassium. I’m on a passel of new drugs. It’s possible my pericardium is damaged, and it’s possible this condition could become chronic. On the other hand, there is no evidence – as several particularly irresponsible doctors blithely suggested – that the cause of the heart issue was metastatic cancer.

There are more funny and depressing hospital stories, like the nutritionist. I was ordering oatmeal and stewed prunes, fresh fruit, almonds and lentil soup from the hospital menu. I wanted protein and fiber but was unwilling to eat meat or dairy products that weren’t organic. The nutritionist was concerned about my protein intake and ordered a high-protein drink for me. Skeptical, I read the ingredients list. It began: water, sugar, corn syrup ... At that point I stopped reading and discarded it.

I found the hospital’s “hospitalist” services equally worthless. The hospitalist who saw me for most of my stay was a physician’s assistant, and all she did was insist I needed blood thinners long past the time the rest of us had determined they were endangering me, and miss the edema caused by five days of continuous intravenous saline administration. I let her listen to my chest and think she was involved in my care, and politely ignored everything she had to say.


I wrote the above earlier today in a bit of a gloomy mood. But today my sister-in-law returned from overseas with laughter and lots of energy for Alder. Tonight my friend Joy showed up bearing a cooler full of edible love from Alaska – caribou, moose, venison, sockeye filets, halibut, smoked salmon, garden chard – along with several cards and small gifts. Earlier, a local friend delivered a delicious pot of soup. It is hard to stay grumpy in the face of such gifts.

I have observed before that the definition of humility is taking more than you will ever be able to give. For me, humility has been a big lesson of the past few years. I continue to receive more help than I can even acknowledge and continue to reckon with my limitations. It is hard to accept that our capacity is limited when we’ve been raised to believe we can do anything.

I try to remember that life is cyclical. Pete Seeger’s adaptation of the Old Testament's Ecclesiastes gives me hope:

To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, a time to reap that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.

This is my season to be weak, to accept help, to experience humility and learn patience. This too shall pass. 

Happy to be reunited with my boy, excited for my girl to visit in two days.

Alder's kindergarten book. ("I like to ride the bus.")

Monday, February 10, 2014

And we were due for some ... complications

Hello friends,

Things have taken a turn for the mysterious with my health so I thought I’d share some facts about the current state of affairs.

I’ve been diagnosed with pericardial effusion, or fluid/inflammation in the sac around the heart. I was admitted to Swedish hospital last Wednesday after several days of severe chest pain. After initial misdiagnosis and treatment, I’m being treated with strong anti-inflammatories and continuous IV saline, and my heart is being monitored 24/7 by EKG.

My follow-up echocardiogram today shows no real change in fluid levels, so we are contemplating the next step. That will probably either be to tap the fluid by ultrasound-guided needle aspiration, or a more invasive surgery to drain the fluid and remove a “window” of my pericardial sac. Surgery brings more risk and more recovery time, but would yield more diagnostic information and might help prevent recurrence.

Some seemingly unrelated complications arose at the same time, including an inconclusive CT finding of a possible pulmonary embolism and – in the middle of all this –  the sudden return to life of my ovaries. Those issues will take some time to sort out but don’t appear to pose an immediate threat to my health.

I have five radiation treatments left, on hold for now.

My dad flew out to help me navigate the medical world, as it was and is a bit of a complex diagnostic and decision-making situation. My father is a longtime internist who is nothing if not a thorough and thoughtful, classically trained diagnostician. My medical oncologist, Dr. Rinn, has also been very involved and supportive, but she works three days a week and has – imagine that – other patients.  

The kids have been doing well. I’m thankful they both have wonderful caring adults with them, and new friends – Alder on Bainbridge Island, Rosie in Arlington, MA – who have embraced them openly.  

Fortunately I have a single room at the corner of the telemetry floor, where I am in a sort of cement turret with three exterior walls. Except for the round-the-clock meds and vitals interruptions, it is blessedly quiet.

I earned this relative peace after my stay on the general floor, where I was lodged in a tight double on the door side. Because my 92-year-old roommate was deemed a fall risk, our door was left open and I got to hear blaring chimes to the tune of “Mary Had a Little Lamb” all night playing from everyone’s rooms. Apparently it plays when one of the “fall risks” (which was pretty much everyone but me) starts to get up, or maybe when they sneeze or flinch. All I know is it played incessantly.

So I was already awake when I heard the nurses come in, scoot past my bed and say to my roommate, “It’s time for your enema, Rachel.”




And then, of course, the enema.

I wasn’t heartbroken when Rachel was moved to some kind of rehabilitation center the next day. But another woman was moved in soon after. By now I was on the window side of the room with the curtain between the beds drawn. It sounded like my new roommate had been smoking a pack a day for 800 years. At one point she took a break from hacking to tell the nurse, “I’ll need a cup for my teeth.” When she started to chat me up through the curtain, responding to what she’d overheard of my medical and personal situation, I feigned sleep.

Later that afternoon a cardiologist finally saved me from the blood thinners that had been mis-prescribed for my case, and in so doing saved me from the eighth floor. About my age, her Romanian name ends in “rescue” and that is what she did.

“You’re getting a better room on the seventh floor,” she said, giving me a sympathetic look. Whatever strings she might have pulled, I am grateful.

Another benefit of my big seventh-floor room is there was space for half of Alaska to visit from an arctic policy symposium at neighboring Seattle University Friday and Saturday. I wish I’d thought to take a picture – it was like a party with Ethan and Mara from Anchorage, Layla from Juneau, Heather and Kirsten from Juneau/Bellingham, and later Mike from Juneau. We solved all the problems of Alaska. And – I love how these things go full-circle – when Kirsten learned of my fish plight (out of AK salmon since Thanksgiving!) she raided the freezer of her brother Ole, who happened to have been my student at JDHS when I student-taught in 1996-7 (and now lives in Seattle), and brought me some of their fishing-family’s stash of smoked salmon. Thank you, Kirsten and Ole!  

I’ll try to keep you apprised of what happens. As I’ve noted in the past, in the midst of uncertainty, questions can be stressful. I do welcome and treasure the support and friendship that’s been offered – I’m so grateful to those who are giving their time and love to Rosie and Alder, taking care of our house and cats, and giving me unflagging support and help in every way.  

Sadly, not many pics because my phone died last weekend, taking my pictures with it. 

Alder with his friend Jerry on Sunday (Thanks, Ines and Bryan, for the pic and for giving Alder a great day.)
Lego fanatics! (Thanks, Tara, for the photo and for bringing the boys to play.)

My sweet boy. I think I bribed him to smile at the camera.

In lieu of Rosie, here is her spectacular animal cell model. (Thanks to my dad for the pic.)