I keep telling myself not to count on anything. A delayed marrow transplant date, room changes in the hospital, the unexpected BK virus, not to mention my pre-hospital life experiences – a leukemia diagnosis, a surprise pregnancy that became twins, a daughter with a genetic disorder. One would think I would be used to surprises by now or at least have low expectations to protect me from repeated disappointments. Strangely, it is not so.
A social worker who met me during my induction chemotherapy called me “the best reframer” she had ever met. In her line of work a “reframer” is a person who can look at a situation that generally seems negative and “reframe” the scenario to seem less negative. Social workers are trained in reframing to help their patients look on the bright-side. “Most people have trouble reframing,” she told me. “But I have heard you reframe at least twenty times since I came in the room. You’re doing my job!” Perhaps I missed my calling. I could have earned the “Social Work Reframer of the Year” award.
In my classic reframing style, I foolishly had my heart set on some big plans for this weekend. Every time I discussed my plans with anyone I was careful to add the disclaimer: Of course this all depends on everyone in my family being well. Its quite likely none of this will happen at all. But the truth was I didn’t believe my disclaimer. I believed everyone would be well. I actually believed I would visit my home for my daughter’s seventh birthday dinner and two days later my husband would come see me at The Cottage for a private one-night date. I truly believed this scenario was possible even though there has only been one week during the last twelve where all four of my children and my husband have simultaneously been not-sick. I guess irrational faith is the beauty of being an optimist.
As early as last week, things were not looking good for my plans. My daughter Summer came down with a fever, runny nose and cough on Monday. Her twin sister Faith followed suite on Wednesday. My son Reef came home from school on Thursday with a fever and a headache. It’s not likely I will be able to go, I told my friends and family. But in my head I thought, Cali’s birthday is more than a week away. Everyone will probably get better by then. And if I can’t visit the house, at least Mike can come visit me. The inner voice of a true optimist can be hidden, but not erased.
Over the beautiful warm weekend, pictures sent to me on my phone of my kids playing at the beach convinced me I was right. Everyone is getting better! I thought. And I imagined my homecoming. I would have the kids change their shirts into clean ones so I could give them hugs. I would bring my own frozen dinner so Mike wouldn’t have to worry about cooking anti-microbially. Instead of mailing valentines to my family, I superstitiously held on to the cards to I could award them in person.
Then on Monday, Mike called for my advice about Summer. “She has a fever again,” he said. Is she still coughing? I asked. With a fever and a cough, Mike took her to see the doctor. Although her lungs sounded strong the doctor did find she had a minor ear infection, but nothing contagious to me. We’re in the clear! I thought again. On Wednesday morning, Mike called again. “Summer has a diaper rash and it’s spreading to her knees, elbows and mouth.” Once again, they went to the doctor. She had hand-foot-and-mouth disease and the doctor predicted Faith would acquire the disease next. Despite its foreboding name, this highly contagious viral illness is common among preschoolers and fairly harmless for young children. While the blisters from the rash can be somewhat painful, they usually don’t last much longer than a few days. The immune systems of older children often fight the virus quite easily, and adults usually show no symptoms at all. However, I was not sure of the implications for a immunocompromised person. I suspected they were not so good.
Meanwhile, I was developing a rash of my own. On Monday, my legs were slightly itchy and a little red. “Just put Lidex (steroid cream) on the red patches twice a day and hopefully the topical application will be sufficient,” the doctors advised. However by Thursday, the rash had progressed to a more angry burning and raised texture on both my upper and lower legs and forearms. Additionally, the rash was starting to interfere with my sleep as the itching and heat generated by the affected skin kept me awake at night. When I went to the ITA the next morning, the doctors definitively diagnosed my rash as a moderate graft-versus-host reaction and decided to start oral steroids. (Strangely the steroids have the unpleasant side-effect of keeping me more awake.) “If we let the rash progress too far, the reaction can become too powerful to stop. We will start you on a heavy dose of prednisone, and then back off the dosage as the rash starts to go away. However, the steroids will act as an immunosupressent, further impairing your immune system.”
I knew better than to ask her if now would be a good time to purposely expose myself to hand-foot-and-mouth disease by going home to my germ-infested house for my daughter’s seventh birthday. Instead I asked how long she thought the toddlers would be contagious and if would be okay for my husband to visit me by himself. The optimist in me still thought there was a chance I might be seeing some of my family this weekend. “If he is the one caring for the toddlers,” the doctor said apologetically, “he should wait for at least a week from their last incidence of open blisters to see you. Hand-foot-and-mouth disease could be very problematic for you right now.” She said she would research how long I should wait to see the babies. Tears came to my eyes, but I fought them back, telling myself I had expected not to go home, it was no big deal. Yet sometimes it feels like I will never go home; will I be stuck indefinitely in the limbo world of going-home-soon?
But surprises are not always bad. When we got back to the cottage, a group of neighbors was congregated at the corners of the nearest cross street, Seale, named for the original turn-of-the-century developer of our historic Old Palo Alto neighborhood. Police blocked the streets and a tent had been erected a few houses down, less than a block from my cottage. For days, police signs had lined the adjacent streets proclaiming no parking on Thursday morning without any indication of why. I had automatically assumed road work, but this did not look like road work. I questioned a man standing on the corner dressed in a slick white suit holding three slim cell phones, What is all the excitement about? It turns out President Obama – yes, THE OFFICIAL PRESIDENT OF THE UNITED STATES – was at a private democratic fundraiser at the tented house earlier this morning! We missed seeing his motorcade by minutes. What a different kind of surprise! Somehow it didn’t matter that we physically missed his procession. The president of the United States passed several feet from my house! I don’t know why, but the thought lifted my spirits. The president of the United States! I must be important! I must really be somebody to be living less the a block from a house where the president goes! I wore a smile the rest of my walk. The excitement in the air was contagious. The proximity of the president felt like a good omen.
SO… here I go again. Optimism is not easily leached from my system. Here are my top ten optimistic thoughts of the week:
The near-sighting of President Obama was a good omen.
- President Obama is a fan of my blog and actually came to Old Palo Alto to meet me. When he found out I was busy at the ITA, he hit up the nearby $33,000 per head Democratic fundraiser as the next best attraction.
- Every time I play Scrabble with Krissy, there is a chance I might win. (Never mind that I have never beat her, and she usually wins by a minimum margin of 75 points.)
- I will be cleared to visit my family by next weekend. Required disclaimer: I realize this is unlikely.
- I will actually drink 3 liters of water today and everyday henceforth.
My new neighbor Mrs. Jobs (widow of Steve Jobs) will see my hepa-mask when I walk by her house and be interested in my cancer story. I will express my condolences for her husband (who I shamefully know little about) and subsequently she will invite me in for tea, which I will pretend I can actually drink through my mask. And then…I will get to see the inside of her historic 1933 Medieval Revival gnome-home designed and built by master architect and artist Carr Jones! Carr Jones, a Watsonville native, was the original “green builder” using surplus materials from the building of the golden gate bridge, second-hand brick and tile, and other salvaged materials to create works of art. (Read all about it at http://www.pastheritage.org/Articles/2101WaverleyMF.html.) So far I’ve only encountered Mrs. Jobs’ security guard (I think?), but I walk by every day because I believe our meeting is imminent.
- Reef will come on an overnight to see me and bring his skateboard, and while we are skating down the sidewalk, my other new neighbor Larry Page (co-founder of Google) will invite us to use his state-of-the-art skate ramp, since it is obviously vastly underutilized; I’ve yet to see anyone skating. (Alright, it’s true, it has been raining…)
- My graft-versus-host reaction will be gone by the beginning of next week if I practice yoga religiously every day for the next four days.
- Taking a mellow walk twice a day will prepare me for the incredible energy I will need when I get home to take care of four kids.
And this last one is not optimism, it is just the all-out plain and necessary truth:
10. I will be in the 2/3rds group for whom AML disease never comes back again!!
The nurses all say feeling positive about your recovery and prognosis has a huge effect on your actual success, and I am lucky to be naturally positively inclined. Are you glass-half-full or glass-half-empty? You can take the glass away, but you can’t change the way us optimists see the world. We can’t help it. We were just born that way.