Hello Steroids, my old friend

Dear Steroids,

How can words even begin to express how much I hate you.  It starts with just eating you...uggh, the bitter taste that literally nothing can mask.  No amount of the horrible applesauce I try to hide you in takes away the taste.  I try to let the sharp bubbles of the diet pop, or some spicy bite of food alleviate some of the initial sting. And then so many...why can't they just make the you in the exact dosage amounts, instead of just 5,10, and 50?!? At least I only have to eat antacids with you this time, instead of all the chemo and antibiotics from treatments.

And I can't just pop you in like a normal pill. You'll upset the stomach you've already unsettled if I don't eat you with a large meal. Which brings me to my next point: the hunger. Man, try as I might, there is little else I can think of. Food, food, and more food! I could literally eat a 3-course meal, any time of night or day, I'm so hungry! I have so many cravings, and usually not for lettuce. And of course you push my sugar numbers up, so I can't even just eat what I want, when I want, without having to shoot insulin.  And all the shots have made my legs so sore and tender, not to mention a bruised mess. I hate thinking about food so much.  I feel like an animal-all I care about is what I'm going to eat for the next meal or snack. I've always loved food, but you make me obsess about it.  So much so that sometimes I just want to hate the food, but I can't cuz it's like I'm possessed by it.

And all that food doesn't come without a price.  Ten pounds literally overnight. Sure, there's a lot of water retention weight, but it still hurts.  Remember last Sunday, when the accumulated effect suddenly sprung? Woke up, and "Hello, Moonface!". On the plus side, my even chubbier cheeks look bright red and rosy!  And my skin is glowing! At least on my face.  Forget my arms, and legs, and stomach, with all their stupid stretch marks from last time.  My skin looks worse than my mom's ,who is double my age and had seven kids!  You stupid stuff, my legs are all swollen.  And my stomach. And my arms. And that sudden weight gain? Killing my joints. My ankles and elbows and knees-so. much. pain. I can barely walk they hurt so bad; let's forget about any other physical exertion. For all your strength, you've sapped mine.  You know how much I hate taking pain killers, yet I jacked up on ibuprofen just to attend a friend's wedding! You don't let me sleep from the pain. You don't let anything give me relief. I hate you so much. I'm so tired of this. Of facing the pain and side effects every. single. day.

I'm tired of feeling tired.  Of no concentration and a shortened attention span.   I couldn't even watch a 23-minute TV show without zoning out! I wasn't going to let you not let me finish this semester. With God's help and the prayers of His people I did. almost. Let me finish up this calculus this week and it'll be a wrap. Just please, please let me start and finish the summer session.  My one request.

And I'm tired of this new me. I hate lashing out at my siblings. I try not to scream every time they slam a door or yell across the room, but it doesn't always work. The noises are magnified in my head, and I can't take it. I feel like a horrible person. I hate spontaneously crying for everything.  You know what a stoic person I used to be. Why do you have to do this to me? I feel like I'm being ripped apart in every direction, all the time.

I've turned into the abominable snowman. New favorite orange dress I had to tie really tight during spring break? Just barely can zip it up. Lovely black and gold dress, that makes me look and feel really fancy? Barely bend over in it. Fun summer dress, with a BELT?! Wow, I loved that belt.  Looks like I'm six months pregnant in it. You not only broke my body, you broke my spirit when I realized I couldn't wear these clothes any more.  Don't worry, I still have the shapeless, baggy things I used to wear when I took you on treatment. The clothes that won't let the creepy crawly sensations you bring affect me too much. The loose waistbands so that my hurting stomach is somewhat comfortable. The lightweight clothes that don't look too nice, that I can afford to have drenched in sweat from the hot flashes you bring on.

I was thinking of giving that half of my closet away.  Literally was going to give it away this week! Good thing I didn't, I guess. I've been slowly working on what I like, and want to wear.  Pretty dresses in colors I like.  Different fun fabrics. Cute prints and cuts. Accessories. I know it's what's on the inside that matters, and all that, but it still feels good to look good.  I'd been working at loosing all the weight you horrible thing has made me gain over the last three years.  I'd accomplished it too! I felt good about myself.  I'd rewarded myself once I met my goal, with those nice dresses.  I was so excited about wearing them this summer. And all my t-shirts. I have quite a collection, and finally didn't look like I was a stuffed barrel in them. They actually fit! It was fun to wear them! But Good-bye. I'll leave you right where you are. Good-bye beautiful dresses.  I've worn some of you twice, I think. Probably won't get to wear you again for another year, at least if I'm lucky.

Hope you're happy steroids. Mission accomplished. 
To end on a happy note, which I really don't feel like doing right now, but I probably should.  June 23rd.  The last day of you horrible and bitter pills. Forty four more days. Then I'll be done with you for a season.  Forever, I wish. For now, I hope. 

Rainbow Nurses Make the Difference!

Hello Friends!
I know it's been quite a while since I posted ! Thank you to the many of you who continue to pray for me. I'm back in college, and am quite busy with classes.

I wanted to share a video that was done by Rainbow Babies & Children's Hospital, where I was treated, based on my earlier blog post about nurses. Hope you enjoy viewing this!!

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! 

T + 100 Days!

So today is my T +100 day milestone!! 100 days from the day I got my cells back! This is kinda the first and last of the BMT milestones.  It's amazing to think that I'm there.  It seems just  a few weeks ago that I was so sick and in the hospital.  But it has been a while since I've been out, 69 days to be exact.

I'm so grateful to be with my family and having a wonderful summer. I've thoroughly enjoyed our family vacation, going to a friend's wedding, making many new friends, and so much more!

So here's what is going on medically at 100 days.  I had several scans that needed to be done, and I'm in the process of getting to those:

• Echocardiogram -ECG: tests the heart function, especially since some of my chemo meds are known to greatly affect heart function. Thankfully I haven't yet seen any heart damage!
• Pulmonary Function Test -PFT: tests lung function.  My earlier PFT showed slight damage that the doctors attributed to radiation.  But my last PFT showed more damage, so I will be seeing the pulmonologist soon.  
• Infectious Disease -ID: I'm seeing them today to determine the plan of action! 
• CT and PET- I will have these scans on July 5th; please pray for good results.  
• Restrictions: I'll be able to eat fresh stuff again! I can go out a bit more, but with my lungs I still have to be careful of catching colds.  

Ruth, Rachel and I dressed up for the wedding!

Sharing bubble tea with new friends Kenzie and Rachel!
I'm really blessed to have made a  lot of new friends this summer!!

McDonald's with Ruth, Stacey, Rachel, Audrey and Abbey!
In hindsight, if only I had switched spots with Abbey we would have looked like a triple stack oreo! 

Rachel and I with Dr. Doug Osheroff, who we met on vacation.  

Daniel and I on vacation

With my wonderful parents

I"m so grateful that God has given me more time on this earth.  I want to make sure I use this second extension on life to honor and serve Him.
This song beautifully captures what I want God to always be to me...
You Are My All in All
You are my strength when I am weak
You are the treasure that I seek
You are my all in all
I'm seeking You like a precious jewel
Lord, to give up I'd be a fool
You are my all in all

Taking my cross my sin my shame
Rising again I praise Your name
You are my all in all
When I fall down You pick me up
When I run dry You fill my cup
You are my all in all

You are my strength when I am weak
You are the treasure that I seek
You are my all in all
When I fall down You pick me up
When I run dry You fill my cup
You are my all in all

Jesus, Lamb of God
Holy is Your name
Jesus, Lamb of God
Holy is Your name

Ports and Procedures!

One of the things about cancer treatments is that there is a great need for IVs.  The chemotherapy medicines, because of their extreme toxicity, need to be given as close to the heart as possible, in order to dilute them in the blood, as fast as possible.  There is the need for numerous blood tests, to check hemoglobin, white blood , chemistry, and piles of other counts (which for me are taken daily!)!  I have really bad veins; before one of my surgeries, it took four tries to find a vein to anesthetize me- my veins, if they could find them, would collapse quickly, or blow- not to mention that it hurts like crazy!!

The Mediport
So I think one of the most marvelous inventions of all times is the Mediport.  I have had one installed for each of my cancers, and it has been a tremendous blessing! It is a surgical procedure, performed under general anesthesia   While the port itself is usually placed in the chest, they make an incision in the neck, to guide the main catheter line as they thread it.  Usually, my neck is soooo much more sore than the incision!  The port is a small reservoir (described like a metal Coke bottle cap) that is placed beneath the skin.  A catheter attached to the port empties into a major vein, in my case the superior vena cava. The port is surgically implanted, and is completely underneath the skin.  At the hospital, my port is "accessed", so that it is usable.  It is an idea like a snap button- one side is inside my skin, the other is outside.  The nurse will "snap" a needle into the center of my port (which you can feel); the port can now be used to draw blood or deliver medications.  It is a guaranteed access each time, eliminating the need for needle IVs!!

My Mediport incision.  The circle is the approximate location of the port- it's about the size of a quarter.  The arrow points to the dressing of my tri-fusion catheter.  

The Tri-fusion Catheter

For my BMT, I needed more than one vein accessed; I have had, at times, four different lines accessed with medications!  So I received a tri-fusion catheter, similar to a Broviac.  My catheter has 3 lumens, for three different accesses.  This procedure was done by Interventional Radiology   I was only under a "twilight sedation", which is basically la-la-land.  Interestingly, I heard the doctor explaining the entire procedure to a resident!
The tri-fusion sticks out of my body, which means that it needs flushed (so that blood doesn't clot in the lines) daily.  When I was at home, I flushed the tri-fusion myself each evening.  Also, there is a large dressing that covers it at all times, which means I cannot get it wet (because of risk of infection).  If the dressing peels or opens, it is necessary to clean and redress it, as there is another risk of infection (a sterile procedure which my parents and I also did at home!).  The tri-fusion is temporary, unlike the Mediport, which can remain in a person for a year!  I will be getting my tri-fusion removed before I go home!

My Tri-fusion catheter dressing
White arrow- where the tri-fusion is placed
Orange outline- a Stat-loc, which keeps the line taped in place on me
Black arrow- the outline of the three access lines

The three access lines; they are three different colors so that you know which ones you have used.  The arrow points to the lumen, or opening of the catheter lines

Endoscopy

I have also had one other anesthetized procedure- an endoscopy.  The doctors wanted to examine my stomach, to determine the extent that my body had healed.  This procedure was also carried out by regular surgery, under a general anesthesia.  The basic idea is that a long tube, with a camera on the end, is stuck down your throat, to take pictures.  Also, they gathered a few biopsy samples from my stomach and intestines.

Ready for my endoscopy with Daffodil and Chuckles!  

My port and tri-fusion have convinced me of the need for new and improved medical devices.  These two medical devices have helped make my treatments so much more comfortable.  There is little we can do about the chemotherapy medicines or their side effects- they are necessary to kill cancer cells.  However, the field of medical devices holds so much potential to help make the lives of oncology patients so much more comfortable!

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 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.  

The Dog Days of BMT

So since my last post was on dogs, this post is on the dog days!  Credit for this term goes to this week's attending oncologist- Dr. Agne Petrosiute.  It certainly describes these last few days perfectly,as they have been really rough !

All my blood counts have bottomed out, so there is only one direction to go now- up!! Now I'm waiting for engraftment day-when my  blood counts double for three days in a row;  when that happens is different for each person.  On average, it takes about 2-3 weeks for engraftment.  Today is my one-week mark!!
So far I've been experiencing a lot of  pain, puking and diarrhea- all of which makes me extremely tired!  The chemo destroyed the mucus lining of my GI tract, causing what is called mucositis.  Because there is no lining, my throat/esophagus is extremely raw.  As a result, I pretty much can't swallow.  Since the lining in my stomach is gone, almost everything I do manage to get down comes right back up.  It's amazing how much I can bring up, cuz there are times I'm sure there is nothing left in my stomach, but somehow stuff does come up....
I'm getting my daily calories from TPN, or IV food.  The nurses always tease me about my "steak and potato" bags!  The taste in my mouth is also altered.  So pretty much everything has a weird, flat, chalky taste.  
I have some pain in my throat, but also a sensation like heartburn in my esophagus.  For the pain, I am now on a PCA pump-Personally Controlled Anesthesia.  The pump gives a constant dose of pain medicine (in my case Dilaudid).  However, I also have a button I can press up to every 10 minutes, to receive a bolus of pain medicine.  This has really helped me with my pain.

Praises
My counts have reached 0, so now they can only go up!
The nausea is becoming somewhat manageable!
No fevers so far!!

Prayers
Counts to quickly engraft
Vomiting and diarrhea to stop completely
Pain to diminish
No fevers or other infections

Here is Pole 2.0- bigger 'n' better.  I had no idea what a hit it was!

The black line is my PCA.  The yellow is my 'steak' and the white my 'potatoes'.  There are three different modules, running a maximum of 9 different bags (nausea and pain medication, antibiotics, TPN, fluids, and more!)  .    

 Today I was strong enough to go to the craft room and make some jewelery.  Notice the ever prominent puke bowl :)

Some people will do anything for a laugh...(they both are usually dignified nurses)

How they walked the entire floor is still a mystery to me. I wish I could have followed them with a camera...Thank you ladies for making my day!  (I was laughing so hard I started choking- but as they say -Laughter is the Best Medicine! )

My Birthday: T-0!

Birthdays, what fun!  We celebrate with our loved ones, the gift of life we have been given.  I'm one of the privileged people to have three different birthdays to celebrate.  My first birthday, my natural birth, is one each human has in common.  I was born on August 12, 1994, a special birthday I celebrate annually.  However, I also have a born-again birthday- March 3rd, 1999.  That was the day I accepted Christ as my Savior  and received the gift of eternal life.
Today, April 18th, 2012, I celebrated what will hopefully be my last birthday- a second chance at life- my bone marrow transplant birthday.  This morning, around 11a.m., I received my own stem cells, that had been harvested about two weeks ago.  Surrounded by my family, nurses, physician's assistant and five syringes of stem cells, more than half a dozen pukes, Morphine, Ativan, and Tylenol and Benadryl later, I'm doing OK!  The whole experience was VERY unique.  The cells are frozen in something that smells like creamed corn (or some say garlic).  However, even the tasty smells of summer couldn't settle my stomach.   As the kids got kinda antsy, Angela took them for a walk, to let them burn of a little energy.  However, Rachel stuck it out, and got the whole thing on video,!  Now we're expecting my blood counts to completely bottom out within the next few days, before they engraft themselves back into my bone marrow.

With Linda, the Physician's Assistant, and Krista, the Bone Marrow Nurse Practitioner

P.S. Notice prominent puke dishes, and sweet lotions :) 

Getting my cells back, one syringe at a time...

With my parents, following my new birthday!  

Krista, Linda, and Margie, my nurse 
Thanks guys- All done with transplant!!!!

Angela entertaining the masked bandits, or vise versa :)

A few prayers and praises...
Praise God that I have received my cells, with minimal complications
Praise God for the wonderful friends who visit, pray, email/text/write me.  I appreciate your thoughts and gestures!
Pray that my sugars numbers would come to normal levels
Pray that my severe nausea and sickness would abate quickly!
Pray that the stem cells would quickly engraft

T-5; T-4; T-3 and counting!

My good intentions of daily blogging have quickly fallen by the wayside.  The past few days have been spent in bed...trying to keep food down!  Currently I'm on a winning streak of keep one meal a day down! Half of the anti-emetic (i.e. anti-puking) medications make me super drowsy, so I almost immediately fall asleep after I receive it...which means I've been doing a whole lot of la-la-land. I've slept through two sets of visitors, and two different movies! I've also been put on 24-hr insulin, with a bolus insulin shot before meals.  

Please pray that my nausea and vomiting would come under control, and that my sugars would stabilize.  

Just 2 days left until our countdown to T-0, on Monday!  Well, I hope you all have a wonderful weekend!