The Best is Yet to Come!

I know it’s been quite a while since I posted; Thank you to the many people who pray and encourage me, and I know I owe you an update. Also, this is like the fourth time I've come to edit this post, so I guess it’s time to just post it. So here it is.

Physical

As far as the cancer goes, I am now approaching 2-years since my BMT (March 18th, 2013)! While I'm so grateful to be cancer free, there are many other issues that I'm currently dealing with. This summer my sugars, which tended to be high when I was on steroids, suddenly skyrocketed. I'm currently on insulin and medication to hopefully bring those numbers down. Also, I've been having some breathing troubles, which are definitely NOT helped by the record setting cold temperatures here in Cleveland as of late. The breathing issues definitely make me much more tired, which just makes school harder.

In February, I was in the hospital for 2 days, due to numbness in my hand; the doctors originally were worried about it being a seizure or stroke, but thankfully it was probably just a pinched nerve. About a week later, I went to the ER with severe abdominal pain. The current thought is that it is liver/gallbladder issues, post-chemo.

Upcoming appointments during my spring break:

• 2-yr post-cancer scans!
• 3rd round of vaccines
• GI doctors, for liver/gallbladder issues
• Endocrine for sugars

Academic

In school I'm currently starting my 5th of 10 semesters, so nearly half-way through! This has been my hardest class load ever, as I'm hitting the hard core engineering classes. Sometimes it gets discouraging to not see my grades as high as I'd like them, but I know this is where I'm supposed to be. This past fall semester was extremely tough, but this spring has been going much better! I'm excited for the friends I've made in classes. Please pray that I'll be able to get good grades this semester.  I'll also be taking classes this summer, and fall, as well as spring 2016, going for a total of 5 semesters back-to-back, so I'd greatly appreciate your prayers.

Other stuff...
Written on a rough day early this semester. Thought I'd just include it.
In other words...
2014 was a really tough year. Sometimes I thought it tougher than fighting cancer. With cancer, there was a definite, attainable goal in sight: beat it. I knew what I had to do, each day, every day. People were there for me. I felt supported and strong, and knew what I had to do.

This past year was really, really different. I had a fantastic spring semester. And then I started my 2nd summer internship with Swagelok; again, another great time. But through the summer different health issues came up. I thought that I was done with cancer. Great! I'm done with all treatments and medications! Not true. My sugars started acting up, my skin was scarily dry, my stomach started being weird. So many different things that were stark reminders that I wasn't the healthy person I thought I was.

The fall semester was incredibly tough. It was a difficult course load, but also done without my awesome friends. It was rough not knowing ANYONE in the class. I didn't really have the confidence I used to have to make friends. All the kids were there in their freshman cliques, and I didn't fit in. One girl even went so far as to ask me "aren't you older than the rest of us?” It hurt to see other kids making friends with random people, exchanging phone numbers, forming study groups, while I was all alone.
Continuing on to finish the story from earlier...I wasn't looking forward to 2015. The last year that I made a concrete set of New Year's resolutions, and was fully committed to fulfilling each one, was in 2012. I was initially diagnosed 10 days later. Again in 2013, I had my 2nd diagnosis to look forward to. In 2014, I was super sick all of Christmas break, so just being able to go to school was accomplishment enough. This year, I was just too discouraged to even think about making resolutions or setting any goals for myself.

In January, on my 3-yr diagnosis anniversary, I attended The U, a monthly gathering for young adults. The message that night was that "this is God's year to act (Luke 4:18)". Pastor Josh Pancher said "you either approach the year with faith or fear. Faith approaches the possibility. Fear approaches the problem." I realized that I was approaching 2015 with fear. Fear of not doing well in classes, fear of getting cancer again, fear of all the side effects, fear of not making friends, fear of so. many. different. things. Pastor Josh went on to say "for every problem, find a promise." I've gone back to the promise God gave me when I ended my first cancer's treatments, from Jeremiah 29:11. For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. I realized that God's promise to prosper me, and to give me "hope and a future" were still true-the best is yet to come. That message ended with 5 things to do.

• Encourage often
• Honor always
• Give generously
• Serve faithfully
• Live boldly

While I could think of things that I were doing in most of the categories, I realized I wasn't living boldly. I was cowering under the weight of what might happen, not living boldly in the promises of all the good that God has allowed to have happened.

Just to list out a few things God has allowed to have happened in this New Year...

• Made an awesome new friend, who is in a lot of my classes- Annie <3
• Made wonderful friends through the U on Campus Bible Study
• Been able to share my testimony at Standpoint, the college group at Parkside Church, which has also led to new friends...
• New friends, and prayer partners through the Cancer Support Group at Parkside Church
• A warm and loving church family
• Been able to again be involved with BEST Medicine Science and Engineering Fair
• My hospital stays have not had anything major come up
• Been able to manage in my classes
• Got a dog :)
• Will celebrate 2-years from my BMT on 3/18/15!
• A scholarship to attend CancerCon, a conference for young adult cancer survivors!

A verse that's been encouraging me, and the one from earlier...

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ²¹ to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen-Ephesians 3:20-21

And as always, to close with a song; this one has been running through my head almost daily since I heard it at a conference...

You stood before creation
Eternity within Your hand
You spoke the earth into motion
My soul now to stand

You stood before my failure
Carried the Cross for my shame
My sin weighed upon Your shoulders
My soul now to stand

So Ill stand with arms high and heart abandoned,
In awe of the One who gave it all
So Ill stand, my soul Lord to You surrendered
All I am is Yours
~ Hillsong

Hello All!

I haven't blogged in a while because life has been rather busy, but I wanted to give everyone a quick update on what's been happening! I am back in school and greatly enjoying it.  I do get pretty tired, and the work is intense, but I wouldn't be anywhere else.  My professors are wonderful, and very gracious when it comes to accommodating my oncology (and pulmonology, and endocrinology, and all the others...) appointments.
I was also able to join the UA Symphony Orchestra, as a violinist, and I'm really enjoying it! Music played such a therapeutic role in both my cancers, and I'm so blessed to be able to be involved again. I'm also excited to be playing with my first orchestra ever!
I've also enjoyed being with all my wonderful friends again, and enjoying all the new friends I've made.  From going to events and getting free stuff, to helping each other with physics homework, to playing in the orchestra, to trying to figure out calculus problems at 10:30 p.m., to planning service events, to encouraging and teasing each other...I'm so glad to be back with all of them!
So far (medically) my counts seem to be doing alright.  However, since I'm just finishing up the final medications from my pneumonitis situation, my October counts will be the accurate set we can go by.  I just had a CT of my lungs today, and next week I'll be getting a Pulmonary Function Test (PFT) and seeing my pulmonologist again.

Thank you for your continued prayers!

Blessings

Hello All!! It's been a while since we updated, and a lot has happened since!!

So here's a quick update beginning from my admissions to the PICU.  I was coughing and couldn't breathe, which led to chest x-ray and eventually admitted to the PICU. While there were many theories as to why I was having trouble breathing, the final consensus led to chemo induced pneumonitis.  Certain chemo meds, which I was on for my BMT, can lead to pneumonia like symptoms.
I am on a treatment regime which consists of taking Bactrim (a pneumonia preventing antibiotic) every 6 hours for three weeks.  I'm also on steroids, and just finished a broad spectrum antibiotic.
Moving forward healthwise...I am seeing a pulmonologist this Tuesday.  I will also be following up with my oncology team on the 9th.  I still have greatly reduced lung function and support, and get tired rather quickly.

Thank you all so much for your prayers, notes, and acts of kindness.  It was nothing short of a miracle from God that I was able to leave the ICU when I did, and return home that quickly.

I ask for your continued prayers as I started college this past week.  It is a bit of a challenge to juggle the work with my health and doctor appointments across town, but I know that this is where God wants me. I have been incredibly blessed with understand professors who are being helpful to accomodate my needs. These verses from Isaiah 40 reflect what I've felt these past two weeks:

Hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary?  He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Here is a song that was an incredible blessing to me in the ICU, as it accurately summed up what I often felt.

"Blessings" 

We pray for blessings, we pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

And all the while, You hear each spoken need

Yet love us way too much to give us lesser things

We pray for wisdom, Your voice to hear

We cry in anger when we cannot feel You near

We doubt your goodness, we doubt your love

As if every promise from Your word is not enough

And all the while, You hear each desperate plea

And long that we'd have faith to believe

When friends betray us

When darkness seems to win

We know that pain reminds this heart

That this is not,

This is not our home

It's not our home

What if my greatest disappointments or the aching of this life

Is the revealing of a greater thirst this world can't satisfy

What if trials of this life

The rain, the storms, the hardest nights

Are your mercies in disguise

'Cause what if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near

What if trials of this life are Your mercies in disguise

Here are some pictures from the past few weeks!

ICU rooms aren't designed for mobile patients...hence the closeted toilet which swivels out! 

Attached to an IV pole...again

When did they take that?!

What can I say?

So the band around my chest was connected to a machine which vigorously shook me for 20 minutes every four hours.  The idea behind it was to loosen any particles in my lungs.  Everyone thought it was hilarious.

The mask shown in the previous picture is what I was constantly on.  It's called a CPAP.  It forces air into your lungs, which can be really uncomfortable and pushes down on your face.  The padding shown in this picture was to relive some of the pressure of the mask.  

Finally well enough to walk again! Going around the unit with Child Life Lisa! 

This is in the oncology ward, the day I was released.  It is customary to sign your handprint when you are done with your treatments and leave oncology.  However, when I ended my treatments, I was released from Seidman Cancer Center, due to the water trouble issues.  As a result, I never got to sign my handprint then, but I did now.  Hopefully I will never again have to be admitted to that ward.  Mine is the purple hand on the right! 

Biopsy Results

All the biopsy results came back cancer-free!! They took out my entire thymus gland, and a piece of tissue behind it, which looked suspicious.  However, both came back cancer free!!
Next, I will be looking at a date to get my Mediport removed, normally a fairly routine operation.  And I think my next set of scans will be in October!

Thank you all for your prayers, encouragement and support.  We are truly blessed to have friends like you!

Science Lesson for Today- The Thymus
"The thymus is a specialized organ of the immune system. The thymus "educates" T-lymphocytes (T cells), which are critical cells of the immune system, which includes the lymphatic system.  The thymus is composed of two identical lobes and is located anatomically in front of the heart and behind the sternum ."

Update on Jen- 16-July

I came home from the hospital Monday evening; however, we are still waiting on the biopsy results.  We hope to have them on Wednesday.  Thank you for your continued prayers!

Surgery Update

I will be having surgery for my biopsy at 11:45 today.  Please pray that everything would go on time and as scheduled.  I may be staying overnight at Rainbow Babies & Childrens.

Updated Test Results

So that harmless, we-are-not-worried spot in my chest has turned into a not-so-harmless spot!

After some further consultation, my oncologist have decided that a biopsy of the area would be a good idea.  As a result, I will be having surgery  to get it biopsied on Friday.
At this point I'm not sure of the type of biopsy, or time of surgery, but I do know it will be done by our good friend and faithful Christian surgeon, Dr. Barksdale.

We would greatly appreciate prayers on our behalf.  Please pray that the result of this biopsy will not be cancerous, or anything to cause worry.  We are thankful for the knowledge God has given the doctors, and that they are deciding to act on this quickly.

I'll try to post more details as I receive them!

Test Results

So I had my 100 days/3 months from transplant PET and CT scan on July 5th.  I know many of you have asked about the results, and assured me of your prayers and support.  Thank you so much.  At my only other post-treatment scans, the day after Thanksgiving 2012, my cancer recurrence was found. So you can understand the trepidation with which I had these scans.   The days leading up to these scans were wrought with nervous energy in my family, as we awaited the outcome of these scans.

This afternoon I had an appointment with my oncologist regarding the result of those scans and...they showed no cancer! The CT scan did show a new spot in my lungs, but because it didn't light up in the PET (which would have meant a fast-growing cell group) the doctors are reasonably certain that it is not malignant.  I will have a follow up CT in 2 months to compare with today's results.  Also, this means that we are starting to look at taking out my Mediport! My Mediport will come out after the follow-up CT, so possibly sometime in early September.
Thank you all so much for your prayers and kind words of encouragement.  I know God is the only one to give healing, and I appreciate all your petitions on my behalf.
whom shall i fear
I'd like to include this song that I heard on the way to the hospital today.  It was a comforting reminder to me that whatever the test results, "The God of angel armies is always by my side."

Whom Shall I Fear

You hear me when I call
You are my morning song
Though darkness fills the night
It cannot hide the light
You crush the enemy
Underneath my feet
You are my sword and shield
Though troubles linger still
My strength is in Your name
For You alone can save
You will deliver me
Yours is the victory

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

Matching yet converse bald heads with Anne! 

Update on Jen

I know it's been a while since I've posted, but life has gotten pretty busy!  I'm gaining strength, and now there are so many more things I can do! I've been able to bake a little bit, and enjoy the outdoors a great deal!
I still have weekly appointments in the pediatric Hematology/Oncology at University Hospitals.  My white cell, hemoglobin, platelets and other blood counts have recovered nicely!
I am still immunocompromised though, and so continue to be careful with my exposure and diet.

My milestone will be T+100; 100 days from my bone marrow transplant.  That date falls the first week of July.  The first 100 days are the most critical days of a BMT.  At that marker I will need a PET and CT scan (to determine if there is any heightened cell activity, indicating cancer), an echocardiogram (to determine heart function), and a PFT (pulmonary function test, to determine lung function).  My PET and CT scans are currently scheduled for July 5th.  Please pray that those scans will come out clean.

Thank you all for your continued prayers and support!

Our family on Memorial Day! 

Finally Home!

I'm finally home!  It is so wonderful to be back with my amazing family in my lovely home.  It was kinda a whirlwind (and sudden) discharge;  on Wednesday morning I was cleared to leave, as soon as my tri-fusion catheter was removed.  There was an opening in the schedule, so out it came Wednesday afternoon! AND, I got to keep it, which I think is really cool! Thursday morning I was discharged, and after doing some major packing home I was!

With Mrs. Webster, just before my tri-fusion came out.  Both my parents were at our home, and because the surgery was scheduled so suddenly, neither had time to come to the hospital.... and I was a little nervous! God sent Mrs. Webster at the exact instant that I was being taken; two minutes later and I would have been gone!  It was so comforting to have such a dear and loving friend with me for the procedure; it was also a reminder of God's love to me, that He prompted her to come that day at that time! 

Ready to leave!

Goodbye!

Because I'm still severely immunocompromised, our entire house had to be thoroughly cleaned before I could come home; this was much more than your average house clean- everything had to be wiped down with sanitizers, to be as dust and germ free as possible!
Though I'm home, there are still several restrictions I have to follow. For instance, I can't eat fruits or vegetables that aren't cooked, unless they can be peeled, and no fast food.  I can't be in crowds, including church or shopping stores.  I need to limit my visitors to people without colds/coughs/fevers or that have family that is sick.  My family also has to be careful not to interact with those that are sick; please pray that we all would stay healthy and infection free as I recover!

My last night at the hospital, two different friends asked me what was the first thing I was going to do when I got home, which of course I hadn't thought about!  So I decided to list 10 things that I've really enjoyed these past few days, roughly organized in the order I enjoyed them.  

1. Sit OUTSIDE!  Mom said nature was celebrating my discharge, as it was nearly 80 degrees that day- no small feat for Cleveland, where two days later it is snowing!  It was lovely to feel the wind blowing, soak up the sun's warm rays, and just smell the great outdoors!  
2. Walk on carpet- and barefoot! No more hospital flooring! 
3. Cook my own dinner and have my own food! I love to be in the kitchen, so I really missed it.  I made myself mac 'n' cheese shells for dinner. Also, I hate hospital food, and haven't eaten any of it for the last four weeks of my stay. It's so nice to have so many edible choices available at any time.
4. Play a real PIANO!! I greatly enjoy my piano and violin, and have missed them immensely  While I had a keyboard at the hospital, there is nothing like a real piano (not to mention it is my piano) to play on; also, I had all my music to select from!  My sister was afraid I was going to overtire myself from playing and valiantly tried to get me to stop... 
5. My own bed and bedding! No more standardized sheets or blankets, or the plastic mattress or pillows (which can get unbearably hot). 
6. See Duino! -Our (my) cat, who our music teacher has graciously been hosting for the last several weeks.  It is wonderful to have her home again! 
7. Eat good food! I haven't eaten so much in months! My dad made my favorite Indian dishes that I've been enjoying...well I've been enjoying all the food.
8. Sprawl on the furniture...I'm no longer limited to a hospital bed or chair! And no medical staff to interrupt our family times.
9. Wear t-shirts or anything I want again! Because of my tri-fusion and Mediport access and IV lines, I only was able to wear button down tops.  I also only wore certain no-frills clothes to make it easier to adapt to the multiple IV lines and other inconveniences of the hospital.   Not to mention I couldn't/didn't take my entire closet with me.  It's really nice to only have to consider the weather when I choose my clothes.   
10. And most importantly, being with my family!! I've missed them so much...It is absolutely incredible to be back together again.  I love hearing the many sounds of a busy household- both indoors and out- and just being able to do things with them  whenever I want.  

A family again

The beauty of God's creation

A beautiful filled chocolate "Welcome Home" cake from our dear neighbors!

I feel like a released prisoner, enjoying the tastes of freedom once again.  Thank you all for your prayers, supporting words, visits, and outpourings of love.  While this has been an incredibly long and rough road, which isn't over yet, I'm so grateful that God has brought me and my family through this time.  His grace has always has been and always will be sufficient for what we need.  The day I was discharged, I heard a song that has often comforted me, as it reminds me of God's amazing power.  

You Are I AM

I've been the one to shake with fear

And wonder if You're even here

I've been the one to doubt Your love

I've told myself You're not enough

I've been the one to try and say

I'll overcome by my own strength

I've been the one to fall apart

And to start to question who You are

You're the one who conquers giants

You're the one who calls out kings

You shut the mouths of lions

You tell the dead to breathe

You're the one who walks through fire

You take the orphan's hand

You are the one Messiah

You are I AM

Discharge Day!

Just a really quick post to tell everyone that I'm currently on track to be discharged this afternoon!  I just wanted to let everyone know, so that no one was planning on visiting or mailing anything :)
I'll update this post later!

Pictures for Today

Thank you to all who have been praying for me.  Here are a few pictures I thought you would enjoy as I progress on my BMT journey! 

From this Christmas tree...

To this- nothing! I'm free!

The Masked Bandits- John and Chuckles

The gang visiting-I think there were three different games going! 

The daytime view from my room- Severance Hall, the newer buildings of University Hospitals, and much of the campus of Case Western.  The night view is harder to capture, because of the street lights.  

The Healing Garden at the Seidman Cancer Center.  There is a beautiful  labryinth in the center of the conch shaped garden, with fountainsand benches.  At night, the outline of the garden is lit up in different colors! 

Visiting with family...

And friends! 

T- +30

Monday marked my fifth week in the hospital.  While it has been sooooo long, things are starting to move along!  I've been taken of the TPN, and have been able to keep solid food down for a few days now.  I've also been switched back to oral antibiotics and anti-nausea medicines, in preparation for going home!

Right now, the doctors are trying to schedule surgery for tomorrow, to take out my tri-fusion catheter line.  So currently, it looks like it might be able to go home by the weekend!!
 
Please pray that I would be able to take ALL my many pills (which usually runs around 2 dozen pills!!), that I would keep being able to eat, and that the surgery would go smoothly!

My many cards from friends, my siblings, and the University of Akron's Women in Engineering Group! Thank you everybody! I can see all the cards from almost anywhere in the room, and they are a HUGE encouragement to me!!

Blessings from a Doctor

One special incident that happened on one of my lowest points...this past Wednesday evening Dr. Cooke, the attending oncologist, stopped by.  Unlike other doctors, he held in his hand not a stethoscope  but the ultimate textbook of healing-the Bible.    He shared with me verses ending 2 Corinthians 12, which talks about St. Paul's "thorn in the flesh".  Three times the apostle pleaded that God remove them;  Dr, Cooke likened that to three extreme situations in my life-2 cancers and a BMT.  God didn't answer the Apostle Paul with a straightforward yes/no answer, He only replied- My [God's] grace is sufficient for you, my power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me.  This was such a comforting reminder to me, that God's grace will always be enough to meet my needs.  

Dr. Cooke with his Bible

He also shared with me his daily devotional, which was on the life of Joseph. The main point was that through the dark times in our life we see the light of God's power, love, and might best.  Sometimes we need dark times in our lives so that we rely upon God more; too often I know, in my life, I've relied upon myself when things are easy in my life, only calling out to God when I face trials.  Dr. Cooke mentioned how important it is to be dependent on God through both the hard and easy times in our lives.  
Each day he shares an encouraging thought or verse from the Bible.  I'm so blessed to have him!  

On a side note, the initial results of my endoscopy have returned.  There is still some irritation in my stomach (which is too be expected) but thankfully not as much as was expected.  However, at one point in my stomach/intestinal meet the bile is going up, instead of down.  I've been put on a some medications that hopefully will help resolve this matter.  Other than that, please pray that I could eat and take my oral pills, so I can go home!!!!!

A Twist in the Story

So in the course of going through the BMT, I met a cancer patient's worst enemy- the mighty fever!  While low-grade fevers are expected in the course of chemo treatments, I had almost continuous high fevers, for about 4-5 days.  It was a matter of teeth-chattering bone-chilling chills, only to receive tylenol, and come out from the fever awash in a clammy sweat, with damp sheets and a hot head! Thankfully, the fevers have since subsided.
However, the last week has been very trying, as I've struggled with not recovering as fast as I had anticipated.  I've been having awful stomach pains and severe nausea, which has hindered me from eating.  While everything is staying in...I would feel so much better if it just came out!  The new attending doctor, Dr. Cooke, has ordered an endoscopy, to see if there is any other causes for my stomach problems.   Actually, I'm going for my endoscopy very soon this morning!This is one of the main hindrances from getting me home!

The past few days have been really discouraging....but God has been faithful to provide me with many to encourage my days...from a visit from my pastor and his family, to my adopted grandparents, to the palliative care nurse, to Dr. Cooke himself, God has blessed each of my days by reminding me of His love.

Praises:
The fevers have stopped
I have a wonderful Christian doctor, who is helping heal both my body and soul
I've been weaned off the pain medication

Prayers:
The stomach pains and nausea to subside
The endoscopy to provide the necessary information
That I would be able to eat
That I could go home very soon!

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!

A Day in the Life...Noon to 5PM

12:30- My blood pressure, which they're now taking every hour, is still extremely low, and everyone is worried.

1:15- Doctors order a blood transfusion, because my hemoglobin is only 8.4
Normal hemoglobin (or the level of oxygen in the blood) is around 13-15.  Oncology patients typically have a hgb of 10-12 (which can quickly drop), and 8-9 automatically means you will receive a blood transfusion.  Low hemoglobin results in dizziness or fainting, feeling really cold, looking pale, and extreme fatigue, among other things.  Teenagers are the most sensitive to changes in their hemoglobin, and don't do well with a drop in their levels.  

A bag of blood I'll receive

**1:30- Facetime with my awesome fam!!
One of the awesomest things about technology is being able to Facetime or Skype my family, sometimes multiple times a day!  It helps me get to see them daily, and share in their lives for a few minutes.

**2:30- First bag of blood arrives, and I start transfusion;  I drain the juice from a fruit cup.
My blood type is B+, so whenever I get transfused I always remember to be B+! Also, most days I receive platelet transfusions, because of extremely low platelet counts, which is an elevated risk of bleeding.  

2:50- Start IV Kytril, my main nausea med.  Turn on the Food Network, and pull out a little hair while I watch TV.
I've been on so many different nausea meds, it's ridiculous. But what my nurses find hilarious is that basically the only TV I ever watch is the Food Network, even though I can't eat anything!! I enjoy imagining the tastes and smells of the beautiful food I can see;  I also love to cook and bake, so with shows like Chopped I imagine what dishes I would make!  

3:00- Jen, with Smiles with Style arrives with her cart.  I get a lovely tiara, to cement my princess status, and cutesy little flower nail stickers.  I feel beautiful!
Like I blogged earlier, the love shown me is amazing.  Jen brought a cart full of "beauty supplies", and went to each room to spread a little joy, whether it be dress up supplies, lip gloss, or nail arts.  Thank you wonderful volunteers!! 

One Jen holding a mirror for the other Jen!  

What a wonderful idea! Thank you for making me feel special! 

 3:20- Dr. Petrosiute and Kristen, the BMT nurse practioner arrive, because my blood pressure readings are really worrying them.

**3:40- The second bag of blood begins transfusing.
Normally I receive multiple units of blood or platelets. 

4:00- Dr. Matloub and Linda Wakefield, arrive;  They notify us of an airborne water bacteria outbreak.
There was an unexpected outbreak of Legionella bacteria.  However, the bacteria was quickly caught, and drastic measures were implemented to help ensure the everyone's safety.  

4:10- Dr. Bhaskaran, the oncology fellow manually takes my blood pressure.  Still low :(
Because my blood pressures have been so low, I get my pressure taken manually, since that gives a more accurate reading.  

Dr. Bhaskaran with the flashlight, and Dr. Petrosiute smiling in the back!  

4:40- All the blood transfusions finished!

A Day in the Life... 5PM to Midnight

5:00- The doctors are working on a game plan regarding my low blood pressures.  The fellow and residents each come in and talk to us.  If my pressure readings don't go up soon, I will be transferred to the PICU.
It is not uncommon for BMT patients to spend a few days in the Pediatric Intensive Care Unit (PICU);  the PICU has the advantage of a nurse in your room at all times, and much closer watch over vitals, or other special needs.  The oncology ward will even save your oncology room for you, so you don't have to transfer all your things.  Thankfully, I haven't had to go there so far.    

6:15- Anand and Catherine visit.
It is always a blessing to see Anand and Catherine, who lead Lighted Candles World Impact Ministries.  Anand brought an encouraging message from the Bible- by Christ's stripes, I am healed.  After the tumultuous day, it was a comfort to be reminded that God has promised to heal me, and is going to fully restore me.  Also, it was a blessing to be reminded of all the people praying for me!  

**6:25- New bags of lipids and TPN are hung- my steak and potatoes!
New bags are hung every evening.  The problem is, the new bags will set the Pole alarm of every 3-4 minutes, which means a nurse has to come, clear the line, and hope the beeping will stop!  

6:35 - Dr. Petrosiute confirms the plan to potentially move me to the PICU;  the PICU has been notified I might be coming.
It's always good to have a game plan, so that if there is an emergency, everyone knows exactly what to do!  

6:55- Dr. Matloub and Linda come back, and lay out the protocol regarding the bacteria- there is to be absolutely no water usage.  No one can open any tap, flush the toilet, or shower.  We get bottled water to drink, and Purell to clean our hands.
Wow!! You never know the worth of water until the well is dry.  

7:30- I receive my daily dose of Lasix
I"m on a 24 hr. saline fluid drip, to help my organs flush out the chemo.  However, my body retains too much of the fluid, which increases my weight, and causes fluid-retention in my hands and feet.  As a result, I'm weighed twice a day, and my weight is closely monitored.  If my weight is up, I receive Lasix, which helps flush out the excess fluid in my body.  The problem is...I potty-trot every 10 minutes, for 3 hours, after receiving Lasix.  

**8:00- Sheilka arrives, bearing idlis.
Sheilka is an Indian lady who befriended Mom and Dad when they first came to the USA; she and her husband are our adopted Indian grandparents.  They live minutes from the hospital, and visits several times a week.  Both times I've had cancer, Sheilka made different amazing Indian dishes that I requested, so that the spices masked the chemo taste in my mouth.  This time she brought idlis, steamed rice and lentil cakes.  They are plain, soft, and very gentle on the stomach.  I ate one, the first solid food in over 3 days!  She also brought a delicious red velvet cake, for me to share with the nurses!     

Sheilka and I

**8:45- Dad and Rachel arrive, and Mom leaves
Someone from my family tries to always be with me.  Either Dad, Mother, or Rachel (or a combination) spends the night with me.  They switch out every day, and there have been only one 24 hour period when one of my family was not with me.  It's a huge blessing to have someone with me 24/7.  They basically act like my slaves, running to fulfill my every whim and fancy, fetch food to satisfy my cravings, bring me encouraging notes, or help me when I'm puking or sick, among other things!  Thanks guys!!

One tired guy, in the middle of one tiring night

9PM- I force down two Tylenol pills, since I'm running a fever.
My throat is raw, so it's extremely difficult to swallow.  

I alternate drinking the sickeningly sweet medicine with water

Taking the pills; I think my face says it all

**9:30- Sheilka leaves;  I receive my Actigall
The original 12+ pills I was on daily were slowly switched to IV, as I was unable to swallow.  However, there is one pill I still have to eat every day- Actigall; it helps and supports the liver, and is very important.  It's a struggle, but I'm proud to say that I eat one everyday!! 

**10PM- Turn Food Network back on, while I wait for the Lasix to finish working.
Lasix works for a minimum of 3 hours, so even though I'm tired, I can't go to sleep!  I turn on the TV, because at this late hour there isn't really any noise- I miss the noise of the family; the TV is a poor substitute.  

**10:15- Prepare for bed.  Text Mrs. Libassi and Christina.
Their son/brother Sam just had an auto BMT 2 weeks before me! It was so nice to be able to know what to expect from him.  Check out his blog at 

**11 PM -Go to sleep

My sister took this picture of me and my can't-sleep-without-it -dish 

**11:15- Wake up and puke.

I didn't know if I should include this picture...but hey, it's reality! 

**11:20- Back to sleep.  Until I a) have diarrhea b) puke c) Pole beeps d) the nurse needs vitals
Good night.

A Quick Update...

I just wanted to post a brief update.  My ANC (Absolute Neutrophil Count, a white blood cell count) has been over a thousand 2 days in a row!  Tomorrow, if it remains over a thousand, will be my engraftment day!  Also, most of my other blood counts are slowly coming up, which is awesome!

I've also been taken of the TPN and insulin, in the hopes that I will start eating more.  I'm working on this, but my throat is still pretty raw and the mucositis makes digestion extremely painful; also the sudden drop in calories has left me quite tired...
My fluids have been cut in half, and my pain medication reduced by 10%.  I now have 2 units on Pole, instead of 3!

The many prayers offered on my behalf is the main reason I'm getting better.  Thank you, and please keep praying, especially for my family to be well so I can go home to them!

A lovely bouquet of cookies sent by good friends.  The middle cookies says To Brighten Your Day, which these gorgeous flowers certainly did!  Thank You!   

A Bad Hair Day

Everyone has had a "bad-hair" day.  Since yesterday, however, I'm having a no-hair day!    While people have been shocked that most of my hair has stayed in tact so far, little bits of hair have been falling out over the last several weeks.  Last night, however, my hair decided it was through with me!  Just running my fingers through my hair produced thick black strands, which I dropped into piles on the floor and on my bed.  Now, I'm down to a "baby ostrich" phase/look.

I think one of the biggest physical signs we associate with cancer is baldness.  Chemo attacks the fast growing cells in our bodies, which includes our hair and nail cells.  Last time I had cancer, my hair hung on for quite a while, and I never went completely smooth, just all the way down to a few wisps, tactically redistributed!  Since the majority of my hair stayed this far into transplant, I had settled into a pleasant anticipation of keeping my hair (a few BMT patients have kept all their hair!)

As a girl, I always enjoyed trying new hairstyles, finding new accessories, or even simply washing my hair.  So it is incredibly tough to go bald.  While I can't say that I experience any raw emotions, I know that there is a very subtle, yet intense inner emotional component that gnaws at me.  For instance, the inner pain compounded into a major meltdown at 2AM  last night!  Every time I see a pile of hair, my hair, I feel a sharp twinge of emotion.  Sometimes I just feel really sad that I'm going bald; other times I feel stabs of loneliness of being in the 'exclusive' bald club.  But one of the hardest elements overall is watching my parents watch me. Their faces convolute with incredible emotions, including sadness and helplessness.  I have a therapeutic habit of pulling  gently taking my hair out (which my parents beg me not to do).  There is something weirdly comforting to feel the coarse strands of dead hair;  it's kinda like I'm saying goodbye to my hair.

A bit of the hand-picked deluge...more pictures in the next few days!

When I entered college last fall, my head was completely shaved. It was extremely difficult at first, as I saw hair color, style, and lengths of all sorts.  One of my biggest coping methods was wearing loud or big earrings that made a statement. I figured that since I didn't have the privilege of choosing different hairstyles, earrings were as close as I could get; they also filled the feminine gap I felt. Sometimes I hid under a colorful scarf.  As the semester progressed,  my hair started to grow.  Understanding and supportive friends complemented me on the baby hair bows, glittery headbands, and teeny barrettes I started putting in my hair;  thank you college friends, for supporting me and helping me regain some of the self-esteem and confidence my hair stole from me.

 Half-way gone...

A little help to hasten the departure...Joseph and Daniel pulling my hair when no one else was around to stop them :)

Last time I faced the bald challenge with the help of handmade crocheted hats from a dear friend, a bear hat from my dad's coworker, and other whimsical hats.  All in all, I think I'm ready to face this new "bald battle" again!  I know I'll get through this with the help of my dear family, wonderful friends, and "ever present comfort in time of trouble" the Lord.
For the hairs of your head are numbered [by God]...Matthew 10:30 He cares enough to count them, and so He will take care of me!!

 Starting to see my scalp...

I've gone 'smooth' in the back! 

P.S. This post feels really awkward and disconnected to me, and I'm sorry.  I just wanted to write something down now, before the sharp pain dims to a dull ache.  I feel this is just a diary of a few of the thoughts that have been swimming in my head today.