Third Time's the Charm

My grandparents are here for another week visiting from Connecticut, and I’ve definitely been enjoying “chillaxing” with them, as my Grandma would say. Ha! If you fell for that, you must have a pretty funny grandmother :). But anyway, my grandmother and I decided quite seriously that one of the requirements of our time together was her teaching me to knit. Having attempted to learn the art of knitting twice before and leaving two half-finished scarves in my wake, I was determined that this time, it would stick. A few months ago a friend tried to teach me, but the next day when the stitches slipped off my needle, I found that I had already forgotten how to cast on. I spent an hour studying a picture in a knitting book before tearing out my (nonexistent) hair in frustration. When it comes to knitting, I am definitely a kinesthetic learner.

I’m happy to report that my third (and hopefully final) attempt at learning to knit has so far been a success! Let me clarify: I’ve finished one 4” x 4” square, but in this case, the key word is “finished”! My grandma is an incredibly patient and adept teacher, constantly encouraging me while also quickly catching and correcting my mistakes. Her supervision is invaluable in preventing me from reaching “the point of no return,” where the only thing left to do is undo all your stitches and cry and/or burn all your knitting supplies in a frenzied rage, neither of which I’m hoping to do in the near future.

I was fascinated to find out how my grandmother learned to knit. At twelve years old, during World War II but before the United States had entered the conflict, she joined a group headed by a local woman in her community called Bundles for Britain. They learned to knit small squares of yarn that were sewn together to make blankets. The blankets were then "bundled" together and sent to convalescing British soldiers, who were often housed in old castles in Britain. As you can imagine, central heating was lacking, causing these castles to be quite drafty!

As committed as my grandma and I have been to this knitting business, my grandpa is the one who’s taken it the most seriously. The past few days, every time we’ve been watching a movie or doing some other activity that can involve multi-tasking and I’ve not been knitting, he’s sternly caught my attention and made a knitting motion with his hands. If I’m icing my hands by the end of this week, you’ll know why :).

Update on the hugging situation

First of all, I know it’s been 6 days since I’ve posted, but in this case no news is good news! I’ve been home since Sunday (already broke my record), and it’s awesome, though incredibly overwhelming. Let’s just say I have a daily to-do list that’s an entire page long, and that’s just medical stuff. I feel like I could run a pharmacy out of our apartment...actually, that might make quite the lucrative side business while I’m stuck at home!

So here is the hugging update. After meeting with my doctor yesterday, I would like to officially reverse the TLC reference in one of my early posts (“I don’t want no hugs”), though “I DO want hugs” doesn’t have quite the same ring to it. I am now medically cleared to hug HEALTHY people, meaning that if you have a cough, runny nose, body aches, or germ of any kind (haha, okay not that last one), stay away! But if you’re feeling good, I’m happy to hug you :). This means I no longer need to wave to my parents and friends with a goofy smile on my face from 5 feet away, which is what I’ve been doing. When dropping off some bags the other day, my dad literally held his breath, dropped the bags, and practically ran down my stairs, probably because he had sneezed earlier in the day. It was actually pretty cute :).

My grandparents just arrived from Connecticut, and my dad told them quite seriously that they are only allowed to hug me if I “instigate” it. Instigate a hug? I pictured myself shoving my grandpa against the wall, demanding a hug, or else. While trying in vain to keep a straight face, I said, “Grandpa, I think he meant ‘initiate.’” Ahhh...the things we grammar nerds find amusing :).

Home Sweet Home

Just got home from the hospital for the second time this week! To say it's good to be home would be a drastic understatement.

Someone asked me what the most exciting thing was that I did after getting home earlier this week. First of all, what I consider “exciting” at the moment are things like not having to pee into a plastic container. Second of all, how many “exciting” things can you do when you aren’t allowed to leave your house or eat take-out? After some deliberation, I finally answered that it was getting caught up on some of the episodes of Top Chef All-Stars I missed while in the hospital (can you believe they don’t have Bravo??). I haven’t seen the last two episodes, so please don’t ruin it! :)

Here are some other “exciting” things about being home:

• Sleeping in my own bed next to Zack
• Laying on the couch
• Not having to measure how much I drink (to the milliliter)
• Eating homemade food
• Not being hooked up to a pole (a tube in a small backpack, yes, but it’s infinitely better than a pole)
• Having more than one room to walk around in (my walking area has quadrupled)
• A change in scenery (family portraits and candles on the wall instead of whiteboards and fake wood cabinets)
• Sitting on our balcony (haven’t had the chance yet, but I will asap considering it’s the only place I can go outside the apartment besides the hospital!)
• Making Zack his lunch for work every day :)
• Having more clothing options
• Watching Netflix instant movies without them re-buffering every 10 minutes
• The smell of my own sheets
• Everything about my bathroom
• No beeping!!!

To give you some perspective, those are just the ideas that came to me in the first 5 minutes of writing this post :).

Disappointment and renewed hope

Some of you know that, after being discharged on Tuesday, March 15, I had to get readmitted on Thursday, March 16 for some GI issues. One thing I’m rapidly learning is how low the threshold is for getting readmitted as a BMT patient, especially this soon after transplant. It’s like, “Oh, you have a cough? Pack a bag. You’ll probably need a week of IV antibiotics!” :(

Not gonna lie: having only spent two days and two nights at home, I was pretty upset (translation: cried several times throughout that day and almost screamed when I had to get hooked up to the new RP). For those first few hours after they told me to come in, every part of me wanted to just give up. I know, I know, better safe than sorry and all that fluffy stuff, but after being in the hospital for over 5 weeks and only home for 2 days, to get readmitted felt like such a failure. I didn’t want to hope because I felt like my hopes would just keep getting crushed over and over again, so better to not hope at all, right? I can picture some of you nodding your heads right now in agreement, so I better clarify: that was sarcasm. It IS better to hope than not, even if you experience disappointment. It’s incredibly difficult, but I know that regardless of the outcome of my hopes, I am WAY more unhappy living without hope than with.

Romans 5:3-5 NLT describes why there’s always reason for hope:
“We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.”

I’ve been doing much better since getting readmitted, so the plan is for me to get discharged tomorrow morning. Please pray that the discharge will go quickly and that I will stay home! Let’s go for a record and get at least 3 days this time ;).

Things I WILL miss about the hospital

Yes, you read the title correctly. I'm beyond homesick at this point, but I found out that I'll be going home Monday! :) It was admittedly much more difficult to create this list than the previous one, but here are a few of the things I will miss about the hospital:

“Free” food: With a mom who raised me to never buy anything without a coupon and a father who we call “the human garbage disposal,” I’m not one to waste food. There have been few items on the LPCH menu that I have been able to eat without pain over the past few weeks, so instead of wasting perfectly good food, I order items my friends enjoy and send them in bags with Zack to give them. I now have enough saltine crackers to last a lifetime. Applesauce or Diet Pepsi, anyone?
Massages: If you read my blog post on hospital massages, you know how good the massage therapists are here. To say that going from paying nothing for twice a week massages to getting no massages (my immune system will be too low for me to go to public places for at least several months) will be a difficult transition would be a drastic understatement :(. Even when I am able to have them again, I’ll be paying at least $60/hour for a massage, since Zack will be hard-pressed to let me go back to questionable $20/hour massages in East Side San Jose!
Child Life: To quote myself in an earlier post, these are the people who “keep you from being bored out of your mind” while in the hospital. One of the women who works for Child Life has been stopping by a few times a week to see if I need anything and has so far provided me with beautiful floral wall decals, stickers, scrapbook supplies (I know all the guys reading this are extremely jealous at this point), a CD player, and Big Brain Academy for my Wii. Every time she comes, she asks if she can bring me anything else! How spoiled am I??
Having my sheets changed and room cleaned daily: Let’s face it; some of us (ahem, some of my former roommates...) go extreme lengths of time without changing their sheets. Even I, who in a strange way enjoy cleaning, don’t enjoy this task. Having someone do it for me, especially the particularly kind and competent house-keeping staff who work here, is something I will greatly miss.
The nurses and doctors: Most of the nurses and doctors on the stem cell unit are not only experts in their field, but are some of the kindest and most compassionate I have ever met. When you’ve had the lengthy and complex medical history that I have, that’s saying a lot. I almost cried when saying goodbye to one of the residents this week!
Unlimited supply of all your toiletry needs: Vaseline, toilet paper, cleansing wipes, toothbrushes, toothpaste, soap. What more could a girl want?
Walking my doctor’s dog: Twice since I’ve been here, Zack’s been able to walk one of my doctor’s Labrador puppy. Since I love animals and can’t play with them for months, in addition to the fact that I’ve felt like a prisoner in my room, he took the puppy up to my window to say hi through the glass! I think he likes me...:)

Things I WON'T miss about the hospital

It's official: I'm homesick. As I prepare to hopefully go home on Sunday, here are a few of the things I'm looking forward to saying not-so-fond farewells to:

RP: I joke with people that RP and I are not on speaking terms at the moment. He and I have one of those love/hate relationships that Zack described in his earlier post. RP has been good to me, but I will NOT miss unplugging him and wheeling his big butt across the room to get a fork, let alone go to the bathroom in the middle of the night.
Beeping: As I mentioned in my post “I’m beeping,” the machines on RP beep countless times throughout the day, and you can only silence them for 10-20 seconds at a time. To make life even more exciting, some of the alarms aren’t able to be silenced. I’d like to have a word with the genius who came up with that fantastic idea.
Having to measure my daily input and output: Input is the amount and type of fluids you drink. If you don’t know what output is, it would be a little too awkward to explain it here.
Being woken up several times a night to have my temperature, oxygen saturation level, and blood pressure checked and my blood drawn: Enough said.
Funky smells: the antibacterial hand rinse, the antimicrobial soap, the bleach used to disinfect the counters, the food trays, and even the towels start to offend your nostrils after the first couple weeks of being here. These are smells that even our Glade Warm Vanilla air freshener can’t overcome (though we’ve been told repeatedly that our room is the best-smelling room on the unit, a fact which I’m quite proud of).
Sleeping in a hospital bed: the mattress is hard, the pillows are lumpy, and the bed is a twin, which means Zack has to sleep on the couch across from me. I have to get a massage just to work out the kinks in my back.
Being confined to a 20’ by 20’ space: Our one-bedroom apartment is a castle compared to my hospital room.
Wearing a mask whenever I leave the room: It’s not only annoying and uncomfortable, but makes conversation nearly impossible. I have to shout to be understood by anyone, and talking creates a humidity inside the mask which causes a line of sweat to form above my top lip. Highly attractive, I know. As I take it off, I always imagine the sound Darth Vader’s mask makes as he removes it, like gas escaping from a valve. Hssssss....
Processed food and hospital food: With the exception of BBQ pizza and Shanghai noodles, hospital food can never beat a good home-cooked meal. Yes, even the French fries and chicken tenders lose their appeal after awhile, and Easy Mac DEFINITELY gets old when you eat it every day for two weeks.
Sandpaper towels: You would think the new ones would at least be soft at first, but I’m starting to think the hospital just buys them scratchy to begin with because, with daily washings in bleach and who knows what other chemicals, they probably figure, “They’re going to lose their softness in a day anyway! Let’s save some money!” You know it’s bad when you start using hospital blankets to dry off after a shower rather than towels.

Flushing the toilet: the flush on the toilets in these bathrooms sounds like a tornado is tearing through the unit. The sound of a toilet flushing three times in a row at 5 am this morning woke me out a deep and peaceful sleep. Why someone would flush a toilet three times in a row is a separate issue.

Coming soon...“Things I WILL miss about the hospital.” :)

Going home soon!

It’s Day +13 post-transplant (Day 0 is transplant day) and I’m doing amazingly well considering all that my body has been through the past several weeks! Though I’ve been working hard to eat what I can and exercise when possible, God and everyone’s prayers are definitely the reason I’ve been recovering so much faster than even the doctors thought possible. My doctors have used words like “amazing,” “incredible,” and “wow” in the past couple days when discussing my progress.

At the risk of totally oversimplifying and botching the process of recovering from a BMT, I’ll attempt to describe it here. Basically my immune system starts from scratch on Day 0 and has to completely rebuild itself. For my type of transplant, they usually don’t see evidence of this process until at least Day 14, but in my case they started seeing my white blood cells and other functions of my immune system recover on Day 9. Today, 13 days post transplant, they’re planning on me going home this Sunday, March 13!

With all this good news, I can easily get ahead of myself, as I did yesterday when we asked when I could walk around outside the BMT unit. The doctor reminded me that I was 12 days post transplant and therefore like a 12 day-old newborn. He said that everyone should treat me with the precautions they would a newborn, though if he caught Zack or my mom trying to burp me, he would have some concerns.

Please pray for me to go home next Sunday. Though there’s a very high risk of me having to get re-admitted within the first couple months for viruses or infections, which we pray and hope doesn’t happen, going home for any period of time would be a huge encouragement. Sorry RP, but it’s time to say good-bye :).

It's the little things

As I mentioned in my previous post, when I’m not constantly thinking about what I don’t have, I can appreciate the “little things.” Here are just a few of the little things I’ve had fun with recently:

S2H wristband: I’m letting you in on a big secret here, because this thing is really cool and I kind of want to be the only person who has one. But I’ll tell you anyway: I read about this wristband in a magazine a couple months ago that monitors your activity level. For every hour of activity you do (most kinds of cardio; has to include continuous arm movement), you earn a code that you can upload to s2h.com. The codes give you points which can be redeemed for gift cards at places like Amazon, iTunes, Sports Authority, Best Buy, etc. It basically motivates you to exercise, which is especially helpful when you’re recovering from a BMT and therefore periodically feel like you've been run over by a train.

Big Brain Academy: This is an awesome game for the Wii that I requested from Child Life (a.k.a. the people who keep you from being bored out of your mind during your hospital stay). As the title implies, it’s a series of mind/logic games and puzzles that test and improve your cognitive functioning. When offered a choice of any Wii game on the market, who requests one to improve her brain function? You don’t have to say it; I already know. I’m a nerd :).

Stickers: Using my mom’s coupon organizer, I started a sticker collection in second grade broken down into categories such as “!Things to do with a house!”; “!Miscellaneous!”; and “!Holidays!” No, those weren’t typos; I actually wrote the exclamation points on either side of each word, because as a seven year-old, I was cool like that. As the years passed, I slowly lost my sticker obsession and moved on to more “mature” hobbies like reading, playing sports, or collecting Beanie Babies (don’t judge). But as I’ve started scrapbooking these past couple months, I’ve rediscovered the joy of stickers. Lately I’ve been using them in my “Marathon book,” a guestbook which I’m having all the hospital staff and my visitors sign, and the stickers make the book so much more colorful and fun. My mom, a much wiser woman than I, never lost her love of stickers and has always used them on her students’ papers :).

What are the “little things” that bring you happiness? I’d love to hear...

The secret of being content

Philippians 4:11-13 New Century Version (NCV)
“I have learned to be satisfied with the things I have and with everything that happens. I know how to live when I am poor, and I know how to live when I have plenty. I have learned the secret of being happy at any time in everything that happens, when I have enough to eat and when I go hungry, when I have more than I need and when I do not have enough. I can do all things through Christ, because he gives me strength.”

My mom and I were talking yesterday about how most of the time we live thinking that if we only had (fill in the blank), our lives would be perfect. For me, I get tricked into thinking that if I only had good health, I would always be happy and never have a care in the world. Yet there are so many people who are completely healthy and completely miserable at the same time, or people who die having accumulated wealth but no relationships. The scripture above says that the secret of being happy no matter what is not my health, money, career, accomplishments, looks, etc., but it’s the strength and encouragement I get from my relationship with God.

Another scripture that supports this idea is Mark 8:36-37 in the New Living Translation:
“And what do you benefit if you gain the whole world but lose your own soul? Is anything worth more than your soul?”

I do hope and believe I will have much improved health as a result of this transplant, but no matter what may come, I know contentment is possible :).

Love/hate relationships

Being in the hospital causes you to develop a love/hate relationship with a lot of things. You love all the medications that ultimately will help you, but hate the effects of them later.

So I thought I would list some things that I love and hate:

1) I love how modern medicine has enabled Becky to receive her new marrow. I hate how it makes her feel.

2) I love how the nurses and doctors have been very caring and empathetic while we've been here. I hate being woken at 2 a.m. by the nurse who is trying to take Becky's vitals.

3) I love the machines that help distribute medication to Becky. I hate the beeping sound that goes on during the day and at night. Would someone please tell the companies that make these machines to soften the beep?

4) I love how Becky gets meals that are geared to help her maintain a healthy diet. I hate how on the Step 1 diet nothing has any taste, especially when I have to eat it.

5) I love how large of a room Becky has to stay in. I hate walking 45 yards to the bathroom.

The list goes on and on. Trust me, Becky has way more to write on this topic than me.

We appreciate all of your kind thoughts and prayers. Becky and I see the light at the end of the tunnel and hope to end our love/hate relationship with the hospital soon :)

Can you give me a number?

There’s nothing like someone asking you at 4 a.m. to rate your pain on a scale of 1 to 10. This question is a favorite among the LPCH nurses and a pet peeve among the patients. Actually, most of the nurses know how annoying this question is and usually ask apologetically, but you still get sick of it pretty quickly when you’re asked 3 times a day. What’s funny is that for the little kids who can’t understand the question enough to answer, they show them a list of faces and ask them to point to the face that shows how they feel. As soon as you start reporting pain above a 1 or 2, you get asked twice as often. You don’t even want to know how often they ask you once you start saying a 6 or 7, which is what I’ve been at for a couple weeks now due to leg, mouth, and throat pain from the chemo :/. I know I'm 26, but can I please point to a face?

After you’ve been here a while (I like to think of myself as a seasoned veteran), the nurses shorten the question to, “Can you give me a number?” To the casual observer, this may seem like an easy enough question, but it’s far more complicated than it seems. They tell you that 1 is no pain and 10 is the worst pain you’ve ever experienced. Does anyone else see the problem here? This system is flawed because all pain is relative. The worst pain I’ve ever experienced will be far different than someone else’s worst pain. I’ve had numerous surgeries, procedures, and rounds of chemotherapy, not to mention liver and kidney failure, so me giving them a 10 would probably require me getting hit by a car while being set on fire. Sorry if that image is too graphic...as you can imagine, I don’t get queasy very easily :).

As I type these words, my nurse literally just walked in the room and asked me to rate my pain. She's looking at me a little funny because I'm giggling :). I guess a giggle isn't the typical response to that question...? One time, just for kicks, I should say with a straight face, “Well, it was a 4. But since you asked me that question for the 7th time in the last hour, it’s now jumped to an 8.”

*Side note: Just want to be clear that the nurses here are awesome. Even though I get annoyed by the question, I can’t blame them for doing their job!

Me? Bored?

Many people, upon hearing that I’m stuck in my hospital room 24 hours a day for several weeks, assume that I’m bored most of the time. I’m always surprised by this assumption because I find that the opposite is true! Whenever I have periods of “free time” (i.e. whenever doctors, nurses, physical therapy, occupational therapy, the pain team, recreational therapy, the dietician, psychiatry, or one of the many other teams isn’t in the room, which is rare), I’m usually faced with too many options of what to do with myself! I sheepishly admit that I make to-do lists for these periods of free time so I’ll be the most productive ;). One of my nurses asked me what my plans were for today and I started running through the list I had made this morning, which included balancing the checkbook, getting a massage (hopefully), writing a few emails, exercising, making a couple phone calls, looking through the Sunday coupons and ads, and working on my mom’s yearbook pages. She burst out laughing because apparently her question was asked half-jokingly ;). But just because I’m stuck in here doesn’t mean I have to waste away in a bed, losing brain cells by the minute!

As a person with quite a bit of experience with staying in the hospital, I have found that when you lie in bed all day, the time passes so much more slowly than when you’re finding things to do, even if those things are the most simple and basic, such as taking a shower or reading a magazine. It may not make sense if you haven’t stayed in the hospital for a long period of time, but it’s very tempting to do nothing while you’re here, partly because you probably feel pretty sick and partly because, let’s face it, the hospital can be a rather depressing place. But the more you push yourself to do “normal” things, the more normal and therefore happy and even healthy you’ll feel.

Zack actually made me promise to “rest” today. You may think that’s funny, though if you know me well you aren’t surprised! But since writing requires a fair amount of thought, I should probably end this post. My mission: get bored.

Creative Solutions to the Dreaded Step 1 Diet

Since transplant day (7 days ago...woo hoo!), I’ve been on what’s called the Step 1 SCT (stem cell transplant) diet. As opposed to a gluten-free or dairy-free (or as Zack would say, joy-free) diet, this one is rather random and less intuitive because it’s antimicrobial to protect my immune system. Though the randomness of the Step 1 diet is nothing compared to that of the renal diet, which is what I was on for a couple months last year due to kidney failure. I could eat donuts and candy to my heart’s content but not tomatoes, nuts, avocado, or beans, to name a few. Go figure.

But I digress. The hardest parts of the Step 1 diet are cutting out dairy and fresh fruits and vegetables, and consuming all food within 2 hours of it being opened and/or cooked, which is way more challenging than it first seemed! If I open a jar of salsa or a bag of chips, I can only eat from it once, because I can’t refrigerate or reheat any leftovers, whether perishable or non-perishable, after the 2 hour time limit. After my immune system starts to recover somewhat, I’ll progress to the Step 2 diet, which is infinitely more exciting because I can have frozen pizza AND real ice cream :). Still no fresh fruits and veggies though :(, with the exception of oranges and bananas because they have the thickest skins.

With all these food restrictions, I’ve been unable to eat many things I could normally eat, such as spinach dip. Foods that once seemed unexciting transform into decadent delicacies as soon as you can’t have them! A few days ago, I developed an extreme craving for spinach dip but was quickly faced with its many obstacles to my Step 1 diet. One, I can’t eat the fresh bread with which I would normally eat the dip; all of my bread needs to be frozen or individually packaged by the hospital. Two, I can’t have the yogurt or sour cream that comprises one-half of the spinach dip recipe. And three, once prepared, I can only eat the dip within a 2 hour time frame. But as my GFCF friends can attest to, one of my hidden talents is finding a way around their (and now my) food restrictions :).

Here was my master plan to address each obstacle:
One: the bread. My mom found individually frozen French bread rolls that she could bake a few at a time. Go Mom.
Two: the yogurt. My dad went to Whole Foods and found an awesome non-dairy sour cream made by Tofutti. Go Dad.
Three: consuming the dip within 2 hours. No, I didn’t eat the whole thing, though I was tempted to. But I got to enjoy a good amount of it and send the rest home with a friend who loves spinach dip possibly even more than me, so that made it worth it :).

Other cravings that I’ve found creative solutions for:
Donuts: buy the individual serving pack of powdered mini-donuts...dairy-free and oh so delicious!
Dark chocolate: the mucositis has damaged my taste buds, so I can’t taste many things, including peanut butter and chocolate! So sad. BUT I had the idea that since dark chocolate has a stronger flavor than milk chocolate, I might be able to taste it. Thanks to Caroline who got me some from Trader Joes, I discovered I was right!
Top Ramen: with all this painful mucositis, the only foods that haven’t hurt too much to eat are really soft and slippery foods, such as noodles. I’ve been craving Top Ramen, but there’s no stove here for us to cook them in and any spices I eat have to be cooked, not added afterwards like you normally do with Top Ramen. However, in a moment of pure genius :), it dawned on me to try cooking them in the microwave! Sure enough, heat the water until boiling, add the noodles and spices, then heat some more and presto! Tasty Top Ramen.

So if you have a food dilemma you’d like me to solve, let me know. I specialize in providing creative solutions to your greatest food cravings.*

*for a small fee of course :)