Solumedrol and Salmon

Life certainly has its share of ups and downs. One week prior to my expected summer vacation departure to Alaska, I am hospitalized for metapneumovirus (MPV), a common cold virus that can wreak havoc on the immune systems of lung transplant recipients. I merely had cold symptoms (runny nose, sneezing) yet a diagnosis of MPV or its cousins, respiratory syncitial virus (RSV) or parainfluenza requires a mandatory hospital stay of 5 days for inhalation of an antiviral teratogenic and mutagenic drug called riboviran for 6 hours a day. In addition, to prevent rejection, we are given high dose IV steroids to crush our immune system, called solumedrol. This happened to me right before the July 4th weekend, just two days after Isa was discharged for the exact same thing. That really confused some nurses! I had no contact with her for over a week, so it perplexed me that I would catch it. Could it have been from our common gym? Or maybe Rupie, our dog, since I did dogsit while she was in the hospital? Or is MPV just floating around the environment and I caught it when I went indoor skydiving with friends a few days earlier? A summer cold is no fun, but when it has the risk of causing rejection of my beloved lungs, I will do anything required to treat it. So into the hospital I went, putting up with my 3rd hospital stay of the year and my 11th since my second transplant.

Same bullshit , different hospital stay. As usual, my meds were not ordered correctly (new trainees start in July – beware), the nurses only listen to the orders in the computer, so it began a five day battle to get my medications and my insulin properly administered amongst hospital protocols, regulations and six hours a day of antiviral teratogenic inhalations where no healthcare provider is allowed in my room. I’ve come to the conclusion that there are two things that happen in the hospital- you wait for help or you get interrupted constantly. Don’t get me wrong- Stanford is an awesome hospital with excellent care, and bullshit happens anywhere regardless of the hospital. I am grateful for my access to excellent care, but it also entails putting up with certain institutional bulllshit, like the new mandatory butt check for bedsores, or twice daily heparin (blood thinner) shots to prevent blood clots from being in bed. WTF. (I repeatedly told the nurses I am far from a blood clot risk since I walked at least an hour a day, escaping far into Stanford campus and shopping center until nurses called me on my cell phone).

In addition, it is clear that my complex medical history of lung transplant, diabetes and CF related intestinal problems is too much to bear for the average healthcare provider and computer system. Ironically, never have my meds been delivered so off in timing, dose and amount than in the hospital. To avoid total battling and stress, I decided just to request the most crucial meds- the immunosuppressives and the anti-infectives (prophylactic antibiotics, anti-virals and anti-fungals) and forego the rest because it was too much of a hassle to complain, page the doctor, change the order, wait for the pharmacy, have the nurse administer them hours later when I was doing riboviran. Giving medication in the hospital, especially insulin, became quite a circus act, with a song and dance of protocols that took up to 30 minutes to administer. There were days I would get certain meds and days where the meds would be totally forgotten. At home, I administer my meds within 5 minutes, with the right dose, timing and amount and I never miss a pill. Because I had developed a severe CMV (cytomegalovirus) infection in 2010 following the administration of high dose steroids, I was given only half the normal “high” dose, with 250 mg of solumedrol per day for three days. So by day 4, I felt the usual side effects of high dose steroids like muscle wasting, insomnia, hunger, high blood sugars and a short emotional fuse. My friend calls it “Roid Rage” – how fitting. Add that to being in the hospital with frustrating care and by day 5 I was about to scream. Most of the nurses were wonderful in putting up with my assertiveness, my correcting of them, my control freakishness and they trusted that I knew my medical regimen better than they did. At one point, the computer order stated that I should get only 1 unit of insulin for dinner, a negligible amount. I asserted that this is incorrect, it won’t be enough and my blood sugars would sky rocket. The nurse stated that only 1 unit was ordered with meals and that is all she could give. I frankly told her “That’s fine. You are here to follow orders, I am here to stay alive. So you give me that 1 unit and then I’ll just take my own.” Rule of thumb, ALWAYS b.y.o. meds to the hospital and HIDE them for these kind of bullshit emergencies. Don’t tell anyone because they will confiscate them. The nurse was amazingly understanding and let me do my own thing. Being in the hospital is a constant battle to not be harmed further by medical mistakes. I am there to get better, and will do what I have to do to do so. My greatest fear is the likelihood that I will be killed if I ever lose consciousness and can’t advocate for myself in the hospital.
Anyway, for five days of incarceration, thank God for the 14 hours a day of Power of Two related email that kept me highly distracted, emotionally distant and focused and productive during this sleep deprivation time. I requested to do my inhalation treatments from 6pm- midnight and it requires administration in a plastic tent that sits around a chair, so I had to sit for six hours straight behind plastic. Some people do the treatment while sleeping but I feel this is not effective since you don’t take deep breaths during sleep and probably are not getting much of the medication. So I chose to be a conscious active participant in the treatment by sitting up and breathing deeply in my tent, obsessively doing email to pass the time. Anyone coming into the room at any time had to wear a gown, masks and gloves. Anyone coming into the room DURING the treatment had to wear even more special protection and usually looked like an astronaut. After the treatment, it was required to shower, change all linens, and have housekeeping clean the room due to the toxicity of the drug, but at 1:00 AM I usually refused this disruption and just wanted to eat my dinner and go to bed. I actually did some research on riboviran at work and found it a class C teratogen which is not so bad. So most of these excessive precautions were due to hospital occupation health standard protocols. Sometimes the treatments and post-protocols would land me sleeping as late as 3 AM , only to be awoken by nurses at 8 AM for the blood sugar-insulin circus act.

The most painful part of this was the huge environmental cost of this endeavor. A nurse would put on all the gear, then forget a pill, take everything off, throw it in the trash, go get the pill, and then put a whole new set of gown , gloves, masks on and this would repeat over and over every day for each visitor – dietary, respiratory therapy, doctors, nurses, etc. Not to mention the $100,000 bill for the antiviral drug, and immunoglobulin that gets administered. By the end of the 5 day stay, I felt incredibly guilty that I made a carbon footprint the size of a dinosaur just for a meezly head cold. That my friends, Is exactly why I have to be such a germ freak. Nonetheless, I asserted my need to leave by noon on Thursday, and thankfully the HCPs cooperated; I showered, changed into my work outfit that I had packed , dropped my stuff off at the car, and went straight to work since my vacation/sick time off is so limited with all the Power of Two time off that is coming up.

Ok enough complaining. After two days of work, I was off to Alaska. Nothing would stop me! I still felt weak and agitated from Roid Rage and sleep deprivation, but packed my arsenal of meds and headed to Anchorage within 48 hours of discharge. The greatest irony was the contrast of the completely artificial sustainability of the hospital (and my life for that matter), to the pristine natural environment of the great last frontier.

Trent and I went as a second honeymoon to celebrate our 1 year wedding anniversary; it was a dream of both of us to go. As always, I went in honor of my deceased lung transplant friends, Barb, who LOVED Alaska, and for Lara, who loved nature. The last conversation I had with Barb last year, I told her I’d go to Alaska for her and she was so touched she cried. So again, nothing was going to stop me.
For our first portion of the trip, I went into Stenzel travel mode which is a mix of frugality and OCD “see all- do all” energizer bunny franticness. Poor Trent had to put up with that all week. I did marry my opposite- a type B slowpoke who loves to relax so that challenged my patience on more than one occasion. At one point, I thought , “Dude, do you want some prednisone? Maybe that would speed you up.”

Our first full day brought us to a Prince William Sound cruise where we enjoyed shore birds, otters (did you know that they have the thickest fir in the world?) , Dall dolphins, salmon, eagles, and most impressive- GLACIERS. That was incredible to go right up to these walls of ancient blue ice and hear the cracking and breaking of the ice, amongst the incredible peace of the calm waters of Prince Williams Sound. A day later we headed south to Seward and took a 7.5 hour cruise of the Kenai Fjords National Park, where we saw killer whales, humpback whales, eagles, dolphins, jellyfish, seals, jellyfish, shorebirds, puffins, and even mountain Dall sheep up in the hills, as well as more glaciers. It was an incredible maritime adventure but poor Trent got totally seasick and was miserable with his eyes closed half the time before the five Dramamine kicked in. I, on the other hand, am spared by this genetic misfortune, and sat at the front of the ship with the wind blowing on my face looking out like a hawk for hours on end. I wore six layers of clothing including a down jacket as I am a wimpy California who does not think that 50 degrees is a nice warm summer day. It was as cold as 33 degrees in front of the glaciers!

Our adventures took us to quaint bed and breakfasts, cozy log cabins in the woods and private B&B’s in Girdwood, Seward, Denali and Anchorage, where we were treated by friendly wonderful Alaskans who made us the most delectable breakfasts with local berries, organic eggs and birch syrup (it takes 100 birch trees to make 1 gallon of birch syrup!). For lunch we would pack a sandwich (I brought foil pouch tuna with me, Stenzel style) to save money and interruption of the day , and only splurged for dinner, enjoying Alaskan delicacies such as wild salmon, halibut, king crab, crab cakes, and seafood chowder. I even tried reindeer sausage. Amazingly my intestine cooperated, reminding me that probably most of my constipation problems are due to stress and sedentary life back at home.

Mid week I celebrated the fourth anniversary of my second lung transplant and couldn’t imagine a more fitting place to be truly enjoying life. The scenery was breathtaking, often leaving me speechless and close to tears thinking about Lara or Barb and how they would have enjoyed this so very much. I could almost imagine that I was hiking with Lara, and we would stop at a lookout point and enjoy snacks, laughter and good conversation. I truly felt her presence. I was slower and had more difficulty on our hikes than in the past, as I feel my age and the 11 years of chemotherapy under my belt wearing on my body. But nonetheless, I itched to hike and took every opportunity I could despite driving over 1000 miles. We hiked right up to Exit Glacier in the Kenai Fjords National Park, we hiked just outside the Kenai River in a small town of Coopers Landing to a lake called Russian Lake, we hiked up a ridge in Denali (1400 foot elevation gain in 1.1. miles- short but kicked my sorry ass), and we hiked again in Denali at the Savage River and Horseshoe lake. On the last day, I had the urge to hike just outside Anchorage just before our flight took off but we ran out of time (guess why) and I was deprived, becoming grumpy just like my dad when he can’t hike. Der apfel fallt nicht weit vom baum (the apple doesn’t fall far from the tree).

After our time in Seward, we headed north, stopping for a hike and rafting trip on the Kenai River in Coopers Landing. As we floated down river, the sun came out, making a mild day with beautiful scenery of bald eagles in the sky and a few early salmon starting to make their way upstream. Cottonwood seeds floated in the air like snowflakes as the sun reflected on the water below. As our rafting bus drove us back up river, I saw a mother grizzly and two cubs near the road, and enjoyed the truly natural visibility of these great animals from a distance. We spent 3 days in Denali National Park, which has been on my bucket list for years. There is something magical about going to ANY national park, but when it is as vast and wild as Denali (6.2 million acres) my heart jumped more than once. Merely a week after my artificially sustained, unnatural hospital stay, I was alone on a mountain peak looking in the distance at the tallest mountain in North America, Denali Peak (aka Mount McKinley) which shows her snowcapped peaks of 20,320 feet through clouds only to 1/3 of the lucky visitors. God was truly with us. From the peak we climbed, I paid tribute to Katrina, my dear friend who died in June waiting for a lung transplant, by spreading a pinch of her ashes as we looked at Denali in the distance (sorry, I know it is not allowed). A few minutes later, a lone caribou came out of nowhere and walked close to us. Could that be her spirit? From the national park bus tour, we saw rams, grizzly bears, moose, marmot, a red fox, and native birds like ptarmigan and grouse. The colors of the valleys, hills, glacial rivers, mountains changed into various shades of green, yellow, brown, and even reds with the changing angle of the sun and clouds. One moment we were in sunshine , the other it was raining. We got off the park bus at Toklat River and walked about six miles on the only road in Denali; for long durations, we were the only ones on the road and the mix between desolation, isolation and anticipation of wildlife viewings made me feel insignificant and vulnerable. During our walk we enjoyed colorful wildflowers of fireweed, forget-me-nots, wild rose and many others of a rainbow of colors. In the summer in Alaska, the sun never sets, so the plants grow frantically. Everywhere we looked there were colors of nature in bloom, like a happy spring day. I was determined to keep walking in the road until we saw wildlife; however after 2 hours of walking in the rain, my diabetic feet were killing me and I surrendered to the next bus that came by.
We stayed outside the national park, in a town called Healy, at a bed and breakfast that was a homemade cabin of a Healy resident. The cabin was huge, and the refrigerator was stocked with all of our breakfast needs. It was quaint, private and supported local residents. It is my belief that bed and breakfasts are the way to go.

On day 3 with my heart kicking and screaming, we headed out of Denali after some frantic souvenir shopping, to head to the small town of Talkeetna, which lies half way between Denali and Anchorage. We had made a reservation for the ultimate splurge- a bear viewing flight seeing trip. I am of mind that everything I do is a once-in-a-lifetime experience and that what happened to Lara and Barb could happen to me at any time so I better do and see what I want NOW regardless of cost. After a wonderful lunch of salmon pizza (Trent’s favorite), and a visit to Talkeetna’s charming gift shops and local artists market, we headed to our flightseeing tour. Unfortunately, upon arrival we learned that weather conditions to go down to the Katmai peninsula for bear viewing were not good and it would be unsafe. So with much disappointment but understanding of God’s will, we settled for an hour flight tour of the region. We boarded an old rocky float plant piloted by a quiet guy named Albert and off we went from the lake. It was my first time in a Cessna-like plane and I admit I said a prayer before we took off. There is too much going on with Power of Two to die now. We flew over the Susitna, Chiltna and Talkeetna rivers, into the Matsunuska-Susitna agricultural Valley and north towards Mt. McKinley. With a rainstorm coming, it was covered in clouds but we could still see nearby Ruth Glacier and the numerous rivers and lakes below. We even were able to land the plane on a remote lake called Spink Lake, where people spend weeks in a cabin without electricity or running water to fish and camp.

On two occasions, we stopped to visit sled dogs- once in Wasillla at the Iditarod headquarters and once in Denali National Park. The dogs are mixed breeds of Alaskan huskies which have some German and Australian sheppard, lab, and other mixes. They are large, slender dogs about 80-90 pounds in mixed colors of white, grey, black , and even yellow, and are trained for running long distances on ice in subzero temperatures. The history of the sled dogs as the primary means of transportation in the winter for hundreds of years was fascinating. We were even able to hold some month old husky puppies, which made my heart melt. That is the only time my maternal instinct comes out, I have to admit….

On our last day in Anchorage, we rushed to see the Alaska Native Heritage Museum prior to our plane’s departure. For 3 hours we were immersed in exhibits and demonstrations of Alaska’s numerous native peoples- from the Yupiks and Inupiaqs of the far North, to the coastal Unangax and Alutiiq people who live off the sea, to the inland Athabascan people who hunt and fish in a more nomadic way of life. Of course the usual native history of white-settler takeover and destruction of their traditional way of life was disheartening, but it was beautiful to see how many aspects of the culture remain, including a demonstration of native sports that are still practiced today as the Native Arctic Olympics. As usual in my visitation to the museum, I was asked what tribe I was from ; ).

Off we went to rush to the airport; no time for lunch, or further hiking. I had to stop thinking of what I didn’t see and focus on what I did. In 9 days we had the time of our lives- amazing sights, breathtaking views, seeing almost every species of animal that Alaska offers except wolf, polar bears and wolverines, and eating delectable seafood among the company of my often ignored-at-home dear husband, Trent.

Life is good and I am truly fortunate. It was a true vacation- no Power of two, no medical crises, just us and Mother Earth. I need that for my soul now and then. Don’ t you?

Thank you for reading this long blog. I hope you have the opportunity to visit Alaska someday and to appreciate the divine beauty of untouched nature.

ANA

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