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.")