Lucky 13

 I did it again. 

Exhaustion from my two hours of sleep last night overwhelmed me as I scrolled through the Lufthansa movie selection, marking the ones I wanted for the flight. Zootopia 2 has been at the top of my list, so I happily watched that before a spot of lunch and a nap. I walked around a flight packed with my coworkers before returning and selecting another one from my bookmarked list, Audrey's Children. The name niggled in my brain as something I had heard of before and noted wanting to watch. The description stated it was about a doctor and the children she wanted to help, and the open scene stated it was based on a true story. I settled in to begin. 

And just per my luck, it was about cancer. Two days until my 13th bone marrow transplant birthday, so I decided why the heck not, could be therapeutic, and continued watching the movie. And cried I think almost the entire two hours of the movie. There's the usual heaviness that accompanies me leading up to BMT birthday, and I had the typical triggers of hearing the chemo names. And so, sitting in my airport seat, I sobbed and sobbed, oblivious to my seat mate, or colleague behind me. The tears I don't allow myself to cry in my house were bottled up, and seemed to explode as a never ending fountain. 

But there was something new today.

A sense of gratitude like I haven't had ever before. For doctors like Dr Evans who pushed the status quo to find a better way and increase the survival rates for children like me. The movie glimpses into the weight oncologists carry, and I'm crying with gratitude at my many doctors. Dr Peter's with his funny ties. Dr Ahuja telling me what’s my hurry to go to college. Dr Picone with her contagious smiles and laugh. Dr Hackney following me in survivorship. Dr Letterio with his kindness and push for research and better outcomes for us. And dang it I know I'm forgetting so many- many with shaved heads in solidarity with the children they serve. The Fowler family, for ensuring we didn't have to sit in the drab and menacingly cold hospital walls, but could enjoy a colorful space suited for our age. My beautiful nurse Ceci who was my lifeline every moment of cancer, and afterwards. A beacon of hope and kindness in hell.

I saw the children in the movie and cried for the ones who aren’t with me. The little toddlers taking their first steps in the corridor, the nurses and I cheering them on as they held the IV poles. My little Spanish friend, doing our nails together and rubbing each others bald heads. The little kid in the seat in front of me is poking his head to look at me and play with the windows shade. I hope so hard that when he's my age the survival rates are even higher and that he will never know the devastation of loosing his friends.

I see the staging system in the movie, and follow along with it. Nodular sclerosis, Stage 4b. The most advanced staging of Hodgkin's lymphoma. Two weeks to live. I see the parents in the movie. Lately, I've been thinking a lot more about mine. How do you deal with the news that your oldest daughter has two weeks to live? I will never have a biological kid, and I hope never to know the pain they went through. How to care for their other children, how to afford treatments, how to make decisions. Some decisions have affected the rest of my life, and sometimes its hard to grapple with. I remember my dad bringing his sheaves of PubMed study articles and arguing protocols with the hapless resident who drew the short straw of dealing with the Anands. But I'd like to believe that my dad's challenges made them think, and muse on if they were actually fighting the hardest to be the best damm oncologist they could be. I've seen changes in protocols since I was diagnosed, some that I've been privileged to be part off directly and I'm sure my dad indirectly as well, but all of which will have a positive impact on the next round of cancer patients. A small beacon of worth for what we went through.

The movie follows Dr Evans at CHOP, Children's Hospital of Philadelphia. A scene cut to her looking at 4 Eagles players and my throat caught, as I remembered why I had heard the movie title before. The very first Ronald McDonald House (RMH) began in Philly, with the Eagles support.  The closing credits listed some of the facts of RMH, and my heart is overflowing with the gratitude of every single person who made it possible. It played a huge role in my families life, and I can't imagine how I would have survived without the hot meals my mom or sister would walk from there when I refused to eat. Or the times my oldest brothers could walk over to watch TV together. Or the fact that I knew my dad could have a place to cook and share his love of food and my mom could have someone to talk too and my siblings could paint Easter eggs and play with dogs and practice their piano. I am an oldest child of Asian immigrants, and the weight of what I was putting my family through did and continues to hang heavy on me. RMH eased those burdens.

Last night I walked home with a friend, who I'm going on a weekend adventure with soon. I mentioned how a member of our party didn’t know my medical history, with the intent of not sharing with her as I don’t feel safe with her yet. Few on this plane know my past. My dress does reveal the Mediport scar on my chest, and some of my coworkers have celebrated my BMT birthday with me before. But others know me only for my work in Europe now. I was proudly introduced to others from their offices, or excitedly greeted by nervous ones happy to see a familiar face. My friends in Luxembourg have never seen me bald, or throwing up, or unable to walk. One has seen me lying on the floor in pain, and a few others recently saw me shutting down when my sugar dropped. But they see an active, thriving, living Jen.

I have a life now. Yes, I'm tethered to an insulin pump and will be the rest of my life. Yes, my lungs have been screaming to cooperate in the cold of the recent weeks. The 10 inch mass that once lived there having left its indelible mark on my life. But I'm alive. Due to the work of the researchers who didn't give up despite the obstacles. Due to a medical team and parents who forged a treatment path. Due to my family and friends who surrounded and supported me. Due to the Lord's incredible kindness and sovereignty.

Lucky 13. This week, I get to see coworkers from around the world, and my past roles. I'll get to see Megs and Ruth and John. I'll get to out my feet in the ocean and I'll eat taco bell and corn dogs. And I will be drinking a Shamrock Shake in support of Ronald McDonald Houses everywhere. 

A Day in the Life of a BMT Patient

I always enjoy a Day in the Life stories.  It's so much fun, and so informative, to follow what different people/occupations/countries do for 24 hours.  I've been trying to do 24 hours in my life, to give people a glimpse of what my life is like, and finally (when I woke up at midnight) I had the chance. To top it off, it was one action packed day! This day happened on March 27th, in the midst of the "Dog Days of BMT".

A few things before we begin: while I chronicled everything that happened in one 24 hr period, some entries are daily occurrences   These entries are noted with a double asterisk.  Also, I broke it up into three separate posts, so it's a bit shorter!  Just start reading with this post, and move on to the next two!

Things you'll need to know:
Vitals-Blood pressure, temperature, and pulse-ox measurements.  Scheduled to be taken every 3 hours;  when you are receiving transfusions, taken every 15 minutes.

Pole- there are three different units on Pole, which works out to nine different infusion pumps.  They beep for many reasons...
a) Syringe empty
b) Infusion complete
c) Pain medication nearly empty (2 hours left)
d) Air-in-line (extremely temperamental, can go off in 2 minute intervals)
e) Occluded line
f) Low battery on one of the 3 units
Except for the last one, a nurse has to come and fix it.  The beeps are loud and sharp, and sometimes can be a real nuisance to both patient and nurse. Nurses should get an award for dealing with beeping IV pumps.  Go Nurses!!

Emesis-I haven't recorded every single bout of diarrhea or vomitting, just the major ones.  Something comes out one way or the other usually every 45 minutes.  I know it's kinda gross, and I  didn't want to include it, but my sister said that then I wouldn't be presenting an accurate picture.  She's right, I guess.

A Day in the Life of an Autologous Bone Marrow Transplant Patient

**1AM-Wake up to find I had a bout of diarrhea.  Wash/clean up.  Nurse comes and gets vitals and blood sugar reading.  Exhausted collapse back into bed.
The high doses of steroids I received on chemo have made me temporarily diabetic.  I'm on a constant insulin drip, so I test my blood sugar every 4 hours.  

Half-asleep with a temperature probe under my tongue

**4AM-Wake up to find I had a bout of diarrhea.  Wash/clean up.  Nurse comes and gets vitals and blood sugar reading, which is kinda low.  Forced to drink some juice, which tastes disgusting. Exhausted collapse back into bed.
The chemo has coated my mouth, so that my taste is greatly altered.  For instance, apple juice and yogurt taste spoiled to me, and fish crackers tasted like cardboard.  It's really difficult to eat when everything tastes so weird.  

Checking my sugar- by now I can do while mostly asleep

Even the tastiest of treats can taste bad with chemo

**5AM-Wake up to find I had a bout of diarrhea.  Wash/clean up.  Nurse comes and gets vitals, along with weight.  Exhausted collapse back into bed.  Two minutes later, say hello to the juice from 4AM.
The past few days I've only been puking about 4-5 times a day!  Which is an improvement from earlier this week, when I was puking every other hour.  My throat is really raw, which makes throwing up really painful.  Also, because I don't eat anything, there is practically nothing to bring up, which triggers painful stomach cramps.  

6AM- Wake up to find nurse accessing my Mediport, because I have a fever. Start two new antibiotics for the fever.
So far, they've only been using my tri-fusion catheter.  Protocol demands that the Mediport be accessed  when you have a fever.  Blood cultures are drawn, to make sure the fever is not the result of an infection, but broad-spectrum antibiotics are started as a precaution.  You are confined to your room until you have been fever free for 24 hours.  

**7AM-Wake up to find Doc Brown making his daily visit.  Answer his questions and show him my mouth, all while still half-asleep.
Dr. James Brown is the pediatric resident assigned to me, and he is a very caring doctor.  He finds out about what went on in the night, and if there are any new issues or complaints that I have. On rounds, he will present my case to the oncologist.  

Doc Brown, Mr. Smiley, and me

9:15 -Make it to the bathroom this time!! Wash up, wipe down, and get fresh clothes for the day!
I brought a suitcase full of my own clothes, including shirts, skirts, hoodies and cardigans, scarves and socks, and night clothes.   I didn't bring any t-shirts, only button-down tops, because it makes accessing my tri-fusion catheter and Mediport so much easier.  I find that being in 'normal' clothes (versus hospital gowns) makes me feel much better, not to mention hospital gowns are usually too small for me :) It's important to me to change each day, to feel fresh and ready to face the day.  There are laundry facilities in the ward, and my family washes my clothes periodically.  I also brought some of my own blankets and pillows, to make it feel like my own.  

**9:45- Join my medical team for rounds.
"Rounds" happen every day, including weekends, and each patient is visited.  The attending oncologist and fellow, nurse practitioner, resident, social worker, and various other medical professionals are all present.  The assigned resident presents the patient's current physical condition.  Any issues, complaints, or concerns are addressed;  blood work and medications are reviewed. It is a chance to present everything to everyone at once, and generally make sure everything is in order.    

On Rounds...notice how packed the hallway is! 

Dr. Brown presenting my case to Dr. Petrosiute

10AM- Come back from the bathroom, and collapse on the bed with a racing heart while feeling dizzy.  Within minutes, I'm surrounded by 2 nurses, 3 doctors, a physician assistant, nurse practitioner and my mother, all extremely worried.  My blood pressure is dangerously low, my limbs are swollen, and my hands are tingling. After several minutes, my heart rate begins to slow, and I fall into a deep sleep, surrounded by my amazing medical team.

10:45- Because of what happened earlier, the doctor has ordered an EKG.  The tech arrives and I get one done, while still in my bed.

**11:30- The cleaning lady arrives.  She comes every day, and cleans the whole room.  I love a clean room!

The Journey Begins

My graduation picture taken the week I heard about my diagnosis

Hi!  I am Jennifer Anand.  I am a college freshman at University of Akron, the oldest of 7 children, and fighting my second battle with cancer.  Rather than try to write about my previous cancer, and introduce you to my family, I’ve included the letter my dad sent to family and friends, for the New Year 2013.  Enjoy!

 “Did you take your coffee? How about your backpack? And the keys? How about some money?” Almost the same questions that I was asked by my 1st daughter Jennifer, several years ago. Here I am, sending her off to her freshmen classes, and asking her the same questions and making sure that she ate her breakfast. What a joy it has been to see her driving off to college, with confidence and excitement, learning new things and making new friends. It has been a blessing to see our 1st homeschooled graduate, pursuing Polymer Engineering with a full scholarship at the University of Akron - Honors College.

Sure, it has been a tumultuous year with Jen’s diagnosis of Hodgkin’s lymphoma on January 2012, followed by chemotherapy and radiation treatments for 8 months. And now during her Christmas break from classes, the news of the recurrence of cancer, with more chemo and stem cell transplant treatment for the next 5 months, is not exactly news that makes us jump with joy, but the months in between were really good. Looking back, the 18 years, from holding her as a baby in the operating room, to this Sunday when I tucked her for a nap, have been really great. I have taken the time to enjoy her childhood and walk with her into adulthood. No regrets.

Family picture at church, a week after recurrence, Dec 2012

It is with delight that we see our 16 year old Rachel, who has quickly matured and taken over a lot of the domestic responsibilities from her sister, applying herself as a junior in high school for college admissions and scholarships next year. Diligence and hard work paves her path in everything that she does and her love for the little ones makes her a favorite amongst children everywhere.

Joseph at 14, is maturing physically as a young man, with wit and charm, and tenderness in his heart for his big sister’s trials. He is a good leader to his brothers and sisters, as well as a great helper for mom & dad. He is making strides in his Civil AirPatrol unit, intent on pursuing a career with the US Air Force.

Conscientious Daniel at 12, almost as tall as his brother, plods his way through 7th grade and is applying his mechanical mind to many different projects, his latest being a modified vacuum cleaner attachment to catch small metal debris. He is also an avid birder and naturalist, earning the nickname “Daniel Boone”.

Petite and persistent Ruth at 9, just moved in with her big sisters into one bedroom, but is still our little princess. She is picking up skills from her big sisters in baking and crocheting and drawing, and is enjoying her 4th grade.

Outdoorsman David at 7 is a sharp shooter with his BB gun, and would rather identify birds and bugs and spend time with them outside than sitting down and reading a book about them inside.

Our 6 year old “baby” John will get offended if he knows the adjective being used, declared one day that he passed his piano lesson the first day because he is “talented”!! He does have a big mouth with the sweetest smile, and basks in the pamperings from all of us.

We look back to the summer of 1993 when Ammu and I realized that God’s Word from Psalm 27: 3 “Lo, children are an heritage of the LORD: and the fruit of the womb is his reward” is a promise to us. We have enjoyed all the years of all of our children, from the diaper changes to the driving lessons, along with the trials and treasures of child rearing. Children truly reflect the pinnacle of God’s creation, and our dependence upon Him to accomplish this monumental task of raising them. We realize they belong to God and we are stewards of these blessings from Him.

We are looking forward to a wonderful New Year, and looking to God again in 2 Corinthians 12:9, “My grace is sufficient for thee: for my strength is made perfect in weakness” and remembering to “Rejoice in the Lord!!”

We wish you and your family a Very Happy and Blessed New Year 2013.

Vijay & Ammu Anand (Our Home page)