Déjà Vu: How to Self-Quarantine

Today I wore something I haven’t used in nine years and never expected to use again: my full-face respirator mask from my 2011 bone marrow transplant. I wore it today to go to the store to buy groceries. 

In just a week, our world, at least here in California and the rest of the United States, has changed dramatically. Last week I was mindlessly browsing Costco, chuckling about people over-stocking up on toilet paper and bottled water. Now my school district is implementing distance learning and teachers, parents, and students alike are scrambling to make it work.

The truth is, the world at large is now experiencing some version of the self-quarantine/home isolation that I experienced from 2011-2012. The difference is that I wasn’t allowed to go outside except after sundown (because sunlight counteracted with some of my medication), wearing my full-face respirator mask. Also, I was extremely susceptible to infection, so fungal spores in the air posed just as much a threat to me as did proximity to other people. I know that the immune-compromised among us are facing a similar challenge, especially those in medical care facilities who can’t receive visitors during this time. I feel a deep compassion for their situation and am praying daily for treatments to be developed and supplies restocked to help the people most at risk from the COVID-19 virus. 

The purpose of this post is to share a few things I learned during my self-quarantine that may be helpful to people who have never experienced anything like this. I totally realize they are much easier to do if you don’t have kids at home, but are all possible regardless! 

1. Be grateful: 

I write this first because it has a significant impact on our thoughts, attitudes, and motivation. I am not an expert at this. After you go through something like a bone marrow transplant, you would hope and expect that you’d live every day with a sense of gratitude and wonder. In my experience, that sense of gratitude is short-lived and takes effort to sustain! Now might be the time to build some time for gratitude into your routine (e.g., every morning or before bed, record a few things you are grateful for), or you might create an ongoing list that you add to each day. 

2. Exercise: 

We all know exercise releases endorphins, which help us to feel happy. In the words of Elle Woods from Legally Blonde, "Exercise gives you endorphins. Endorphins make you happy. Happy people just don't shoot their husbands, they just don't." Fair point, Elle.

But just as important a reason to exercise is that moving our body reminds us we are alive. When I was in the hospital for the transplant, I had about one week in which I could leave my hospital room, after which I was confined to my room for about 4 weeks. During that week of freedom, I walked “laps” around the U-shaped bone marrow unit every day. Once I was confined to my room, I requested a “desk cycle which allowed me to simulate riding a bicycle while being seated in a chair. I brought my Wii Fit and 3 lb weights into my room so I could do some movement every day. Don’t take the ability to move for granted, especially when we can still get outdoors. Find some dance, kickboxing, or yoga classes on Youtube, go for a walk or hike, ride your bike. Do it with your kids, spouse, roommates, or on your own. It will help! 

3. Reflect: 

Now is a unique and important time for self-reflection. As a child, I filled notebooks with the stories I wrote and kept a diary, but I fell out of the habit once middle school hit. I had never blogged before my bone marrow transplant, but feeling the need to process my thoughts and experiences and connect with others pushed me into it. Blogging brought me much encouragement and helped me connect with people during my times of sickness and hospital or home isolation. My decision to write in this blog again after 7 years resulted from a friend reminding me of how helpful it was for me to blog during and post-transplant.  

If you’re like me, the busyness of life can feel more urgent than the need to check in with yourself, take note of your thoughts, identify your needs and concerns, and center yourself on your values and faith. But right now you are likely facing a situation where you have more flexible time and are more isolated than usual. Take some time to journal, pray, or write about what you’re thinking and how you’re doing. 

4. Connect:

After you reflect, connect! Didn’t mean for that to rhyme, but it did, so I’m going with it. Don’t just keep all those thoughts and feelings to yourself; share them with loved ones and ask them how they are doing! Going for walks while talking to a friend on the phone is the best because you’re getting fresh air and exercise while connecting with people, too. Though we can’t see each other closer than 6 feet apart, we don’t have to be emotionally and socially isolated. We can help each other manage the strain. 

5. Explore:

Find some new things to do during this time. What is something you’ve wanted to do or learn about or accomplish but haven’t felt you had the time? It’s a little tough to get supplies right now (e.g., instrument, knitting needles, etc.), but there are tons of online options and things to do, fix, or rearrange around the house. Have you heard of the subscription website Masterclass? Zack just showed it to me last night. You can learn a series of lessons from experts in their craft, from basketball to negotiation! Pretty amazing.

While I was self-quarantined after my transplant, I started this blog ;), finished some knitting projects, created a couple of scrapbooks, organized every room of the house, sharpened my cooking skills, and read constantly. Once I was allowed outside more often, I began going for walks every morning and  came back so refreshed for the day! When possible, use the extra time at home to do those things you typically can’t do. 

6. Schedule:

The lack of routine and structure, rather than simply being home, is a source of stress and anxiety. One thing I found to be helpful during my year of being home-bound was creating a schedule for each day, either with times or just a list of activities in priority order. It’s something I still do on weekends or when I have a day off. To make it easy, you can have a general schedule for every day that you tweak slightly. I recommend creating or revising this schedule each night before you go to sleep, so it’s all set for the next day. You can find tons of sample schedules online for both you and your children! Don’t get overwhelmed; just pick one that you like and tweak it as you go.

God is Faithful

Zack and I shared at church on Sunday about God's faithfulness shown through our story of the past 3 years. Here is what I shared:
In January of 2010, right after our 1 year anniversary, I started feeling a little sick. That weekend, while friends were over making dinner, I developed pain so severe they had to carry me to the car so we could go to the ER. That day was the beginning of a 6 week hospital stay during which my organs were failing and my body was filling with fluid. After 5 weeks of scans, tests, spinal taps, bone marrow biopsies, and multiple teams of doctors visiting me daily, I was diagnosed with HLH, a rare and aggressive immune disorder with a high mortality rate.

My mom and Zack made me promise not to look up my disease online because of its frightening statistics. I only told a few people the actual name of my disorder because I didn’t want them to look it up and treat me like someone who was dying.

I began intensive treatment that caused side effects like suicidal thoughts, intense insomnia, dangerously high blood pressure, anxiety, and depression. My weight dropped to 85 pounds and I had to be fed through an IV. When I tried to go back to work as a teacher, I couldn’t. In the middle of teaching a lesson one day, I had to leave and collapsed outside from high blood pressure and anxiety. I felt like my entire world and self had fallen apart. I didn’t know who I was, who God was, or what he wanted for my life anymore. Every day brought fear and pain.

Yet during all of this, I was surrounded by relationships: Zack stayed with me every night in the hospital and even slept on the floor beside me at home when I couldn’t sleep. My parents came over every day bringing food, talking to my doctors, and staying with me late into the night. Zack’s parents, our relatives, our friends, and even my doctors and nurses were a constant source of support. So many of you brought us meals, visited us in the hospital, stayed with me at home, and faithfully prayed for us. Even though many of our prayers for my health weren’t yet answered, we could see God’s faithfulness to us through all the people he brought into our lives.

Four months after my diagnosis, I relapsed and became even sicker than before, with another month-long hospital stay and kidney dialysis. I remember that each time I had dialysis, I felt like I was dying. My depression and apathy grew, to the point that I considered suicide. I questioned and hated God. Yet even in our darkest hour, God was with us. I was released from the hospital still on dialysis, and my doctors expected me to continue it for four months. Instead, my kidneys recovered within 2 weeks, which astounded the doctors.

I began the next stage of treatment, which was chemotherapy. My hair fell out and I had to stop working at my school because of the risk of getting sick from the children. Even with chemotherapy, my doctors were afraid that I would relapse again unless I had a bone marrow transplant. I knew what a transplant entailed and I was terrified. Another 6 week hospital stay with pain and nausea, isolation for 3 months, and avoiding all public places for a year. This was a turning point in my relationship with God, because finally I turned to him with all my heart. I prayed every day that God would make it clear what path to take and that I would only have a transplant if it was a cure. When we met with the transplant team at Lucile Packard, we found out that they had just added to their team a doctor who had trained with the leading world expert on HLH. She was familiar with administering the type of transplant I would need for HLH, which had never before been done at Lucile Packard. We were again amazed by God’s faithfulness. I knew God was telling me that even though I was about to go through another intense trial, he would be by my side, taking care of me.

 

Proverbs 24:16

The godly may trip seven times, but they will get up again.
    But one disaster is enough to overthrow the wicked.

Many times throughout the past 3 years I felt like I had just fallen seven times in a row: For example, I had 12 hospital stays the year after my transplant. During the same year, I developed a bone condition from my steroid treatments that meant I would need both knees and both hips replaced before the age of 30. 

In the world, this would ruin most people’s lives. But with faith in God, you can recover from anything. There is always hope, because you know that not only will God never leave you, but he will develop your character and bring good out of your suffering.

Before HLH, I had a lot of dreams. Dreams to be a teacher, run marathons, and change the lives of young people. Joseph in the Bible also had a lot of dreams, but he went through a lot of suffering as well. As God brought him through a near-death experience, abandonment by his brothers, and undeserved prison time, he was developing Joseph into an incredible leader who would save the lives of his entire family and their descendants.

Genesis 41:50-52 MSG

^50-52 Joseph had two sons born to him before the years of famine came... Joseph named the firstborn Manasseh (Forget), saying, “God made me forget all my hardships and my parental home.” He named his second son Ephraim (Double Prosperity), saying, “God has prospered me in the land of my sorrow.”

God fulfilled Joseph’s dreams, but in a completely different way than Joseph ever would have imagined. Instead of growing bitter because of all his suffering, Joseph remained faithful to God and kept believing in God’s goodness.

When you believe God is faithful, you don’t grow bitter because you’re looking forward to the rewards that will come from your suffering.

God has brought so much good out of our suffering. Some of the greatest things are that my sister became a Christian in Seattle and is now marrying a Christian next month. And recently, I worked with several psychiatrists at Lucile Packard Children’s Hospital, who I met during my bone marrow transplant, to start a leadership and support group for teenagers and young adults with serious illness. We’ve had two meetings so far and over 15 people in attendance at each meeting. You can see people’s faces light up in the meeting because they finally don’t feel alone, and they are gaining hope that they can overcome the challenges in their lives.

God has brought us through so many hardships in the past 3 years, and we are better and stronger for it. He has been faithful to us, and we are determined to be faithful to him.

Back to Work

Today was my first day back to work since my hip surgery over two months ago, and it was a good day. I was greeted by calls of “Welcome back, Mrs. Mariscal!” and my heart was seriously warmed when one student announced, “Mrs. Mariscal’s back!” to every student who walked down the hallway before school started. Trying to be proactive, I had gone to my classroom after school yesterday to do some last minute lesson planning, unintentionally ruining the surprise of the huge sign that read “WELCOME BACK MRS. MARISCAL!” along the wall. So as I walked through the classroom door this morning, I had to pretend to be surprised yet again, making sure to let out several “oohs” and “aahs” to express my amazement.

After greeting me, my students immediately began to interrogate me about how I spent my time off from work. Since our school is year-round, perhaps they simply can’t fathom the idea of having 2 ½ months of no school. They were shocked that I didn’t play video games in my time off and assumed I therefore must have been extremely bored. I assured them that I was not, since boredom is a condition restricted to childhood, but I thanked them for their concern. :)

Constipation and Drug Hookups: The True Story of Rehab

For part 2 of my hip recovery saga, here is a list of some noteworthy moments in rehab.

1) On my first day at rehab, I looked around and found that I was one of three patients in the entire facility under retirement age. 
2) For the first few days in rehab, I was bedridden without someone helping to lift my legs off the bed, putting my bathroom needs at the mercy of my nursing assistants. One nursing assistant liked to wait 20 minutes to answer my call button and then severely chastise me for trying to get out of bed on my own.
3) Though the occupational therapist and I spent about 20 minutes covering my bandages before my shower, our efforts proved to be in vain when I discovered huge wet spots covering the butt of my pants during a group therapy session. What made matters worse is my nurse almost had a heart attack because she thought the wet spots were drainage from my wounds.  
4) During a therapy session, I noticed that the clock on the wall was noticeably crooked. As I walked over and adjusted it, another therapist noticed and asked, “You’re anal, aren’t you?” Considering almost everyone in the facility was on heavy narcotics and experiencing the well-known bathroom side effects, I didn’t think “anal” was the best choice of words...
5) There was nothing quite like waking up in the middle of the night to the sound of the woman throwing up in the room across from me. Perhaps more disturbing was the nurse asking the woman, “Are you ok?” Wouldn’t “How can I help?” be a more appropriate question?
6) The faulty automatic hand sanitizer dispenser mounted on my wall kept releasing a stream of sanitizer every time I walked by. I worried the entire visit about falling flat on my newly operated hips after slipping on a pile of sanitized goop.
7) I’m convinced that physical therapists learn a secret language before they are certified and then use the language to make everyone else feel inferior (not really). Here is the encrypted message the PT wrote on my whiteboard under “Today’s Plan”:

-ModIc FWW in unit

-13 LE WBAT

How can I follow the instructions if I can’t even read them?
8) After only a few hours in rehab, I soon compiled a list of essential devices after hip surgery. #1 is a “scratching stick,” which in my case happened to be a $2 back scratcher from Walgreens that served the much greater purpose of scratching those hard-to-reach areas, which is pretty much everywhere after you’ve had hip surgery.
9) During one physical therapy group session, we played a ball game in which we were supposed to call out a group member’s name and then bounce the ball to him or her. The game ended up being more like a round of dodgeball: 2 people didn’t call out names, 1 kept calling out the wrong name and hitting whomever he threw the ball to, and others threw like they were trying to make a covert pass. One man kept nodding off during the exercises, prompting the physical therapist to loudly call out his name, and another man had bad hearing so you had to shout his name or risk smacking him in the face with the ball. The funniest person was an old Asian woman who never called out anyone’s name and laughed whenever she hit someone. Fortunately for her, she was too cute for anyone to get mad. Including me, 9 out of 10 of the people in the group couldn’t bend down, so unless the ball came directly to us, we just stared at the ball on the floor until the therapist came to pick it up.
10) On one of my last nights in rehab, I dreamed I incorrectly spelled my last name “Mastical” and couldn’t remember how to spell it correctly because of my pain meds. I woke up in a scared sweat.
11) Before getting discharged, the doctor discussed my drugs with me and we made a list of the ones I would need to pick up. I was a little taken aback when the doctor asked me if I had a “good place to get drugs,” and my shock increased when he proceeded to lean in and tell me he had “a place.” Images of Ponzi schemes and backdoor drug hookups flashed through my mind, and I was glad my friend was there to witness that I refused the hookup in case this ever went to court. I had to hold back my laughter when he named the hookup: Costco.

I hope this all helps to prove a very important lesson: if you’re ever in need of a good laugh, go to rehab.

Rehab Redefined

I don’t know if anyone else is like me, but I had never heard of “rehab” until about a year ago, when my grandma went to rehab after suffering a nasty fall. I thought rehab was a euphemism for a temporary nursing home, since my grandma is in her early 80s. So when my UCSF care manager encouraged me to consider going to rehab rather than straight home from the hospital, I was kind of insulted. I can’t explain why I changed my mind, except to say that God intervened because once again, he knew what was best for me far more than I did. Little did I know that going to rehab would be the best thing I could do to advance my recovery.

If you, too, are unfamiliar with rehab, let me clear things up for you. Rehab bears little resemblance to a hospital, let alone to a nursing home. All rehab facilities and nursing homes provide a different experience for the patient depending on the level of support needed, so I received much less help than others at my rehab facility, and I’m sure that some people receive less help at nursing homes as well. But at my rehab facility, we walk to and from the gym for 6-7 daily sessions of intense physical and occupational therapy, walk to all meals at the dining hall, bathe ourselves daily, and ask for help rather than expect it. My experience of spending 5 days in rehab strengthened me and made me ready for home.

Without rehab, I could have survived at home while struggling to perform daily tasks, but the constant difficulties would have taken away the enjoyment of being home. With rehab, I was prepared for these challenges and could focus on gaining strength and being with family rather than struggling to dress myself and use the bathroom. I’m already planning to go to the same facility after my bilateral knee replacement, which will be sometime within the next couple years.

Now that I’ve extolled the benefits of rehab, I feel free to take the next few posts to expose its strange moments and quirky staff :).

Pros, Cons, and Outrageous Moments at UCSF

I have been chomping at the bit to write a blog post these past 11 days since my surgery. There’s nothing like a hospital stay to provide me with plenty of new material, since the truth is, I lack both the time and energy to explain to my friends and even family all that goes on in just one day at the hospital. To help me keep track of the most important, appalling, or comedic events, I wrote notes in a journal kept beside my bed. Many of these notes were written during the middle of the night under heavy sedation, so more than once I flipped through my notebook in the morning with no idea what the symbols scribbled on the page were supposed to mean. Despite that setback, I was able to gather enough anecdotes to form several cohesive blogs, so here is #1: Pros, Cons, and Outrageous Moments at UCSF.

As a result of being on oral Dilaudid and Oxycodone every 2 hours in addition to intravenous Dilaudid every 10 minutes, my memory of UCSF, which includes the first 4.5 days of my hospital experience, is quite hazy. Good thing I have my notes!

Pros:
1) Towels: rather than use these to sand down a refinished table, as I would with other hospital towels, I would use these in my bathroom at home!
2) Food: though I barely ate it, Zack preferred the content of my food trays over the food others offered to bring him from local restaurants! When I mentioned that I didn’t have much of an appetite, one of my nurses offered to make me a milkshake!
3) Dry shampoo: I don’t understand how it doesn’t weigh your hair down since you don’t wash it out, but it doesn’t! I kind of want to use it after recovery...

Cons:
1) HUGE wait-time after pushing the call button: by the time a nurse answered my call, I frequently forgot why I called, especially when I was taking Valium.
2) As a secondary downside to this wait-time, I couldn’t go to the bathroom until they came to the room. They would give me 2 Liters of fluid and then expect me to hold it for 10 minutes! Not possible.
3) Lack of communication among staff: the first thing I was told by my doctors and nurses after surgery was that I have 3 hip precautions for the next 3 months: 1) Don’t cross your legs, 2) Don’t turn your feet inward, and 3) Don’t bend your hip beyond a 90 degree angle. Three days after my hip surgery, as the X-ray tech was arranging my legs, she told me to cross my right leg over my left while sliding in my left knee and bending up to reach it at a 45 degree angle. What?!?

Outrageous (and/or funny):
1) The first night, I asked for my scheduled dose of Actigall, a medicine necessary to help my hurting liver. My nurse informed me that I was not ordered for Actigall, and when I questioned this, believing it to be a mistake since I talked to the doctor about it earlier, the nurse said, “Well if the doctor didn’t order it, you must not need it.” Right, because doctors never make mistakes.
2) After I got back from the horrible X-ray, I needed pain medicine but wasn’t due for it yet. Since they offered me no options, I inquired about a massage therapy department. The nurse looked at me inquisitively and repeated, “Massage therapy? What’s that?” Hiding my disbelief and desire to demand if I was really at UCSF, I explained that massage therapy is a department of massage therapists who can provide massage to relieve pain. She responded, “Oh, that would be in the volunteer department.” Really?? Do you want a volunteer rubbing their hands all over you?
3) The day of my surgery, after we got back to my room, I asked Zack to bend down as I held up my finger. Hesitantly, he agreed and lowered down. I held up my finger, wrapped in the oxygen saturation monitor and giving off a red glow, to his nose and announced, “You’re Rudolph.” I have no memory of this incident.

The Bionic Woman

I haven’t written on this blog for quite awhile, and there’s far too much to catch up on, so I’ll just start with what’s going on now. I’m a mess. Over the past 6 months, I’ve discovered that I have osteonecrosis, a disease causing bone to collapse, in both my knees, my right wrist, AND both my hips, and the pain in my hips has progressed to the point that I am having bilateral (i.e. both) hip replacement next week. Yes, at only 27 years old, I will be the bionic woman.

Yesterday, we were watching Raising Hope, and Burt was describing to Virginia why he fell in love with her in high school even when she was in a back brace.
Burt: “I knew you were out of my league.”
Virginia: “I was not, I was in a back brace!”
Burt: “That was a bonus! It was like you were hot and bionic!”

Zack and I turned to each other, and I gave him a smirk and was like, “Ohhh yeahhhh.” Raising Hope may now be my favorite show.

And that's not the only positive reference to bionic women in today's media. Ever wondered what inspired the popular song "Titanium" by David Guetta? Take a look at some of the lyrics:

"You shoot me down, but I won't fall
I am titanium"

"I am titanium"? Seriously? What else could this line be referring to but my new hips?

I appreciate finding the humor in my situation, but the truth is that the path to becoming the bionic woman has its downsides. Last month my doctor put a cast on my right wrist to ease the pain, and I started using a walker to get around at home and at work. After school, while using my walker to get outside to wait for my students’ parents to pick them up, I had two parents come up to me and ask about my car accident. I had no idea what they were talking about until one of them cast a sheepish glance at my cast and walker.

Though the pain is constant and at times, mind-numbing, the amazing thing is the love people have shown me through this experience. Parents at my school have brought me meals because it’s hard for me to shop and cook. Friends have arranged plans around my limitations so I can be involved. The valet in front of my doctor’s office yesterday ran to get a wheelchair for me when he saw I was having a hard time getting out of my car. In all these expressions of kindness and compassion, I see God’s love for me.

1 John 4:12 NCV
12 No one has ever seen God, but if we love each other, God lives in us, and his love is made perfect in us.