My Journal

January 6, 2005

I go for a "regular" girl doctor's visit expecting the usual embarrassing exam.  I am truly unaware of how "un-regular" my life is about to become.  My doctor's facial expressions become serious and she gives the nurse a list of tests to run.  It becomes quite obvious to me that something's wrong.

January 7, 2005

I go to the local hospital to have a CT scan.  Boy do those things suck!  You would think by now, with all the medical technology doctors have, they would have come up with something better than drinking two bottles of barium.  I mean really!  It's bad enough getting a CT, but having to drink a liquid that is thick enough to hold a straw up....need I say more?

After waiting a few hours we meet with my doctor and she confirms our worst fears-ovarian cancer.  Hearing the words was hard enough, but having to tell the horrific news to our family was excruciating.  I could see the fear and horror in their eyes and it pained me to know that I couldn't make it go away.  I knew it wasn't my fault that I had cancer, and yet I felt an incredible amount of guilt for being "the cause" of their stress and fears. 

January 11, 2005

I have a biopsy at the UVA medical hospital.  My oncologist wants to make sure it is ovarian cancer.  I must have been pretty nervous because as soon as the doctor began to make a mark on my stomach I jumped up and yelled "What are you doing to me!  I'm not ready for this yet!"  I must have scared the poor guy because after that "incident" he explained (in great detail)  everything he was doing.  But come on! The guy had to understand my "irrational" behavior.  He was sticking the largest needle known to man inside my belly.  This isn't the Discovery Channel!  The guy was sticking a HUGE needle into my belly, I repeat, MY BELLY!  The overall procedure wasn't too bad, but I have to admit that the needle did hurt....a lot.  Afterwards, when they asked me what kind of band-aid I wanted I asked if I could have a Virginia Tech Band-Aid.  GO HOKIES!

January 13, 2005

There is something about Thursdays that just hate us.  Last Thursday I found out I have cancer.  This Thursday I find out that not only do I have cancer, but it's an extremely rare cancer.  The going survival rate is 20%...What are the odds?  I ought to be playing the lottery.  The next step for us is to find a doctor who actually has experience with this kind of cancer.  I am definitely worried.  What if we can't find a doctor?  What if we do find a doctor and he's on the other side of the country?  What if they tell me there isn't a cure? What's going to happen to me?  

January 23, 2005

We found a doctor!  (And get this...he's only 1 1/2 hours away)  

After meeting with Dr. Weiss and getting lined up for chemotherapy, I decide to go and cut my hair.  Now, in case you don't know what I looked like before cancer, go back to the main page and look at my picture with LONG hair.  Need I say more?  Yes, it was traumatic, but I cut my hair short because I was tired of cancer taking control of my life.  It had taken enough from me and now I was going to be in charge.  I donated my hair to Locks of Love so that it could be put to good use.  After all, I didn't need it anymore.  I kept telling myself that my new "do" was cute and being bald would be manageable... at least that is what I kept telling myself.  But deep down....it sucked.   I hated cutting off my hair and I truly hated the thought of being bald.  

January 24, 2005

 What a day!  Dr. Weiss called today to say that Dr. Sugarbaker ( a doctor in Washington DC)  was interested in taking on my case.  Obviously I have mixed feelings about this because I had gotten myself ready to start chemo and the this "show on the road".  I have even CUT OFF MY HAIR!  I have an appointment next Monday to meet with Dr. Sugarbaker and  I definitely feel a bit unsure about this.  I'm on my third doctor and patience is NOT my middle name.  I know in my head how important it is to find the right doctor and the right regimen of treatment, but I still feel like we are spinning our wheels .  It seems that Dr. S's approach will be to do surgery, abdominal chemo (5 days) and then regular chemo.  My hospital stay is lengthy (15-21 days) BUT it appears that I will be at an extremely good hospital with some of the best doctors on the east coast.  So, I guess that makes me feel a little better about staying in a hospital that is 4hours away from home.  I still feel quite nervous and scared because I don't know if I'll like this new doctor or if he'll even treat me like a human being.  I'm scared of what he'll say or whether he'll remind me of the "odds".  Dr. W strongly believes that I'm in good hands with Dr. S and I'm just trusting that God knows what is best.  But boy is that hard....trusting.  I truly have little control of the situation and that bothers me incredibly.  I read two verses today that reminded me of God's protection:  

Psalm 91:4  He will cover you with his heathers and under his wings you will find refuge; his faithfulness will be your shield and rampart.

Psalm 91:11  For he will command his angels concerning you to guard you in all of your ways.

Oh yeah, did I mention that I've named the tumor growing in my stomach.  Yup I did!  Dirty Harry.

February 4, 2005

We met with Dr. Sugarbaker and have scheduled my debulking surgery (February 8).  It's hard to be 24 and wonder whether you'll be around to see 30.  It's hard to go from being a healthy, active person to a person who has cancer.  This surgery is going to be a "rough one" and I'm scared beyond words.  After Dr. S discusses the risks of the surgery with us, he then informs us that he can't give me a % chance of survival because the the rarity of the situation.  It's now really starting to sink in that this cancer could kill me.  But I refuse to see myself as a victim; only a survivor.  God has blessed me with an amazing ability to fight and there is a reason he made me such a hard-headed, feisty woman...and that is to survive.

February 22, 2005

Well, I think that we can agree that surgery and recovery has definitely NOT been a walk in the park.  My surgery took approximately 11hrs and during that time all visible tumor was removed.  By the time I went in for surgery, Dirty Harry had his own blood supply and had taken over the majority of my abdomen.  I received a hysterectomy, splenectomy, greater omentectomy, a right colectomy, numerous lymph nodes in the abdomen were removed, gallbladder removed, my diaphram was scraped, and tumor was removed from my liver. That's just to name a few!  I also received 90 minutes of heated chemo to my abdomen as well as lots of blood and plasma.  I woke up from the surgery to find a breathing tube down my throat-now that is something fun to wake up to!  I was in the ICU for about 2 days.  I have been told that during this time (because of the breathing tube) I wrote notes to everyone with language that is not suitable for small children.  But there's no proof!  Besides, pain medication does nasty things to your brain and I'm not responsible for my actions during that time.  Smiles!  I have about seven drain tubes coming out of me and an incision that goes from my boobs to the other end-a real "show and teller".    Have I mentioned my "take-out" bag?  I hate it and for those who don't know what a take-out bag is... it is a colostomy bag.  It sucks, but it isn't permanent.  In about 9 months I can have it reversed so I shouldn't complain too much.  Four days after surgery I started chemotherapy.  I also developed shingles, a bladder infection, and a stubborn high fever.    Overall my stay at Washington Hospital Center was just wonderful.  But before I forget, I do have to take my hat off to the wonderful nurses who were just great!  Thank you!

Wanna read more about my hospital stay?  Click below.

March 16, 2005

I'm HOME!  Finally, after what seemed like ages, I'm allowed to go home.  I am still on TPN, a nutrient bag that is given through an IV, and will have to remain on one for a couple of weeks.  I met with my local oncologist and will resume my chemotherapy next week.  

March 28, 2005

I don't know if being at home is all what it is cracked up to be.  I don't have a call button.  I have to get my own food and if I want some good drugs, there isn't a nurse to come and give it in my IV.  I figured that once I was home I would be able to get back to my "normal life"...HA!  That was a good one because my life is very far from the way it used to be.  I find myself constantly wishing for my old life back, knowing it will never be the same.  I feel horrible that Jeff has to deal with all of this mess and that his life has also been flipped upside down...because of me.  But he is an incredible human being, constantly reminding me of my goals and about WHY I need to get better.  

April 5, 2005

Good News!  Good News!  My cancer marker (CA125) results are in and its good news!  Boy, I could use some good news for a change.  Last week we had a "talk" with my doctor about this marker and he was pretty insistent that the numbers were going to come back high due to lots of "doctor reasons".  Whatever...he doesn't know anything-well...that's what I wanted to tell him...but I didn't.  I figured I would just "show him" when my results came in.  HA!  It was great...I loved being able to give the "I told you so" smile to my doctor.  I'm truly not out to get him...just show him up a bit.  Smiles!  Anyway, the results came back at 100  (30 is normal and I was over 1000 pre-surgery).  

After getting back home and letting the fantastic news sink in, it hit me what God was doing for me.  I feel humbled that he would continuously allow such miracles to come my way.  What makes me so special?  I am just in awe of his healing power and what he has been doing in our lives.  I look back and think about all of the things that I have lost because of this cancer, and yet I have gained so much as well.  I know he has a plan for us....it's just a matter of time before we see it played out.

May 4, 2005

Once again...great news!  I had a CT and it came back all clear!  Yipee!  So maybe I'll have just a few more months and then I'll be done with chemo and in remission.

May 25, 2005

Well, I've caught my first head/chest cold since I've started chemo.  Man does it suck.  Having a cold is bad enough but when you are trying to do chemo to....I may be Wonder Woman...but even Superman had his weakness.  Jeff and I also made a huge decision about next school year.  It has been tremendously hard trying to work as a school teacher with chemo...and I only go in once a week for 4 hours!  So, at the tender age of 24 I am going to retire on disability.  It's a difficult decision because I LOVE my job, but I also know that I need to do what's best for me health wise.  I'm not too sure what I'll do for a year at home, but I'm sure that God will give me some ideas and the girls at work will find me some busy work!  I haven't broken the news to my principal or friends at school.  I feel like I'm letting my team down because my big goal throughout all of this was to get back to school in the fall and its not going to happen.  I'm definitely bummed!

June 17, 2005

It's been another "Thursday".  My doctor thinks the cancer has gotten into my lymph nodes.  I was pretty floored by the news because in my head I had already beaten Dirty Harry.  Words can not begin to describe my shock and disappointment.  I must have been in denial about the growing lump on the side of my neck, but now it is quite obvious that we need a new game plan.I begin to wonder about God and our "deal".  I wonder about my faith and whether I was faithful enough.  What had I done wrong?  I'm starting to wonder whether it is even worth fighting anymore.  Rereading my book A Reason For Hope has given me comfort and reminds me that setbacks do  not mean defeat.  I opened up my bible and found myself reading in Luke 8 about a girl being healed and in Luke 7 about God healing the lepors.   God told them all that their faith had healed them.  That is what I have to remember and hold on to- my faith WILL heal me.  In the back of my journal are my 4 reasons for living and read (and reread) each of them I remind myself that I have so much to fight for.  Here's a good quote for the day.

"When it is obvious that the goal cannot be reached, don't adjust the goals, adjust the action steps."  Confucius (Chinese philosopher)

And that is exactly what we are going to do!

June 28, 2005

Dirty Harry Returns....but not for long!

A lot has happened since I last wrote.  My abdominal CT came back and showed some marginal tumor growth (shading is what the DR called it- there aren't any hard masses in my abdomen).  "Dirty Harry has returned".  Dr. H was very kind about it all and his course of treatment matched the one Jeff had seen online.  Yippeeee!  We will be seeing Dr. W at UVA for a second opinion....just in case.  today I started my new chemo regimen and boy has it wiped me out!  I have 4 straight days of chemo and let me tell you.....it's going to be a blast!  This new chemo is going to make me lose my hair (the last type I was only made my hair thin out).  I'm disappointed at the prospect of loosing my hair but at this point I'm just ready to kick Dirty Harry's butt!  So if that means I go "GI Jane" for a while...that's okay.  Jeff is going to shave me head soon....and we are going to make a mohawk to have a lil' fun. OH! And I did get an incredibly cute wig to wear.  And get this, it's even better than my old hair!  There isn't any blowdrying, curling, or styling.....you just stick it on and go!

July 10, 2005

I RAN today!  Yes, you are reading correctly, I RAN!  (okay...actually it was a "light jog") January was the last time I ran and boy have I missed it.  I can't even begin to describe how good it felt to hear my feet pound the pavement.  I was so elated that I even cried...just a bit...they were happy tears!  I'm sure I'll be really sore tomorrow but I don't care because I ran 6 months after major surgery (and while I'm still on chemo!).  I'm da BOMB!  

July 13, 2005

Yesterday we went to UVA to see Dr. W and get his opinion on the situation.  He agreed with the current course of treatment, but I found out there are 17 rounds of this!  For the Love of Pete!  Have I not had enough chemo?  Mosquitoes won't even bite me b/c I have so much chemo crap in my blood!  I was thinking that we'd do this until February...max!  GRRRRRRRR!  Well to sum it up in a sentence:  I'm pissed and bummed.  Today I also started my web page to kinda bolster my "attitude" and I was surprised at how empowered I felt.  It was like I was taking Dirty Harry by the horns and showing him who's boss.  I really like that kick butt feeling.  And even better....at my last visit with Dr. H, we found that my lymph nodes have begun to shrink!  I liked seeing the shocked look on his face when he felt my neck and said "Oh my...it's gotten smaller!"  Dirty Harry....your time is running out!

July 25, 2005

My lymph nodes are continuing to shrink with each round of chemo.  I'm beyond excited that these drugs appear to be working, but I'm still "blah" about the fact I'll be at this for another 15 hellacious rounds.  My hair is almost gone now and I look like a freak!  Why does loosing hair have to be such a "thing"?  I prepared myself, I shaved it, and even got a wig- and yet when I look in the mirror I just want to cry....I hate looking like a holocaust victim...and then I feel guilty for being so vain.  GRRR!  Life can be so complicated.  

August 16, 2005

Today was my 2nd day of my 4-day chemo adventure.  Yesterday my visit with Dr. H was fantastic!  Yes, I said FANTASTIC!  My hemoglobin is up to 10.4 (12 is normal and I'm usually around a 7).  I now weigh a whopping 113.6lbs and my lung capacity continues to improve (thanks to running).  Oh!  Have I mentioned that I can run a solid MILE now!?  Dirty Harry is now down to 2 cm (he was 3.5)!  Let me tell you,  the doc was impressed.  A few days ago we started a new supplement called IMMPower.  Boy does it seem to work because normally I feel like crap the week I get my 4day treatment and I've been going home and doing housework/walking...you name it!  I published my website today even though it isn't all finished, but I'm getting closer each day!  Though cancer has robbed me of many precious things, it has also made me into this strong, humble, and forgiving woman.  It has made me embrace my feistiness, while allowing me to accept who I am.  A good quote for the day would be from Lance Armstrong's new Tshirts for cancer research..."There are only good days and better days!"

August 30, 2005

Tomorrow is round 4 of chemo and I'm actually pretty excited about going.  No, I'm not insane nor am I losing my mind.  The way that I've been looking at this "chemo thing" is the sooner I get it-the sooner I'm done.  My friend Debbie was telling me about a woman she knows who is in remission from lung cancer.  Every time she went to get her treatment or even talk about chemo she would always say, "Oh!  I just LOOOVVVE chemo!  It makes me feel soooooo good!"  You may think she's crazy, but she's a crazy woman who is in remission!  Well, I'm running 1.25 miles now!  I love being able to go running again-to be able to lace up my shoes and turn up my IPod really loud and just run!  There are truly no words to describe the feeling.  Ever since I've started taking IMMPower I feel absolutely fantastic!  I feel better than I have in a VERY long time (and I'm not talking months....I'm talking over a year!)  I have lots of energy and I'm finally starting to feel good about myself (even without hair).  Life is FINALLY starting to "look up".  I know that there will be more days I feel sick and more times of doubt and fear but our faith has gotten us this far and it will continue to carry us.  The Bible talks about how going through valleys makes you appreciate the hilltops.  Boy was God right about that!  I find myself appreciating so much more and being content with what God has given us.  I love being able to say that I'm happy with my life, and I pray that I will always keep this attitude.

p.s.I have a CT next week....EEEKKK but it's all good b/c Dirty Harry continues to shrink a little bit everyday!  

September 19, 2005

Well, it has definitely been a while since my last entry.  But, I've been a VERY busy girl.  Jeff and I are starting up a business, and I'm the "business manager".  Basically, I'm in charge of it all!  Smiles!  We've bought a duplex to fix up and we'll be closing next month.  Starting a new business is kinda like starting a new life, but for me this business makes me remember to be a survivor and to plan for my VERY LONG future.  You can't be sick and run a business right?  Did I mention Dirty Harry yet?  That B@#tard is a whopping 1.3 cm(MAX)!  HAHA!  The Dr. can barely put his finger on it.  My Dirty Harry's GOing Out of Business party is getting closer and closer.  My last CT showed at least 30% shrinkage of tumor in my lymph nodes and the fluid sack on my lungs is COMPLETELY gone!  YIPEE!!!  God is wonderful isn't he?  Boy do I wish I had a camera for my DRs face when I told him all that I have done over the past two week.  I'm now running 2 miles several times a week and lifting weights.  On September 15 I got back to one of the sweetest joys of my life...horse back riding.  I loved every minute of it.  Sure, throwing a 25 lb saddle on top of a horse is hard but....there are simply no words.  I'm not allowed to do any jumping...as long as I don't tell anyone. Smiles  But I'm just ecstatic to be back riding.  Words simple can not describe!  The next morning when I woke up after riding....I had sore muscles that I didn't even know that I owned...but it was all worth it.  I can't wait to go at it again next week!

September 29, 2005

So What Gave It Away?

Man, people can be so stupid sometimes.  I seriously believe that in order to live in today's world you need to have a "human license."  In order to get or keep your human license you would have to take a basic human decency class.  In this class you would learn what most people would consider common sense, basic interaction knowledge, and human decency.  You know...the "duh" stuff.  If we don't educate the quarter of our population on the "duh" stuff, they will keep breeding and have tons of misdirected conversationalists like the individual (whom I REFUSE to speak of as a human) that "resurfaced" my driveway.  He saw me with a scarf on and after a few minutes of conversation about my driveway he busts out with this Einstein of a question, "So, like, do you have cancer or something?"  (A real original one huh?  This question you would DEFINITELY see on final jeopardy!)   Now, for those who know me, you know that I'm quick on the tongue with witty comebacks.  But this was a proud moment for me and my quest to tame my sharp tongue, because I didn't verbalize the mental slaughter of this prime mate.  I did not rip every piece of his challenged, meagerly composed body with my intellectually resourceful bank of hostile words.  NO in fact, I was nice...at least on the outside.  However on the inside I was thinking...." Oh my goodness!  Is that why my hair is gone you stupid excuse for carbon monoxide production?  I mean really!  Use the peanut God gave you for a brain because it ain't rocket science.  Yes, Ken Jennings, I have cancer.  But tell me, PLEASE, what gave it away?  The scarf?  The BALD HEAD?"  So anyways...I didn't verbally murder the ape.  Instead I politely said, "Yes, I have cancer."  After processing my answer, the Einstein wannabe shot off the most indecent round of questions known to man.  I guess to him "Yes" means "Ask any insensitive question you can think of.  And what ever you do, please don't use any manners."......To think that this man may one day populate the earth with his genetically deformed DNA is just appalling.  But the best part of this entire story is when the intellectually deficient gorilla makes his break through discovery by saying, "Boy, that is just sad."  Once again I'm faced with the challenge of biting my tongue...but I think to myself..."Wow!  Thank you for informing me that having a life threatening illness is sad because you know...that thought never crossed my mind.  I would have never come to that conclusion without your help, especially since I think it is a special treat to get chemo and throw up.  You know....it's like a party in a bag!"  

DUMB....What more can you call it?

October 6, 2005

I read a great quote today and added it to my web site.  "Don't quit- Learn today's lesson so you will have a personal story of God's grace and peace to share with others."  Yes, in most people's eyes (and even mine on some days), I've been handed a pretty raw deal.  Nonetheless, I have a choice to make with my life.  I can either sit on my couch all day and think about my life's dreams lost or I can take my "raw deal" and make it into a barbeque.   How does the saying go..."When life gives you lemons, make lemonade"?  I have chosen to learn from this experience and use it to help others who suffer from rare illnesses.  This has become my therapy.  This weekend I will be traveling to visit a friend who also suffers from a rare type of cancer.   She underwent the same type of surgery that I did back in February and has handled the pressure tremendously well.  Helping her has helped me deal with the indescribable anguish that I have not been able to come to terms with since my diagnosis.  Though she constantly tells me that I have been a blessing to her, the truth is she has been the blessing to me!  We leave tomorrow for the Washington Hospital Center and I'm as nervous as ever.  I don't know whether it's the mere thought of returning to the place that I have very few (if any) fond memories of, or whether I'm nervous to see my friend because I know how much it will remind me of my own suffering.  That door has been locked tight and opening it to help others in their quest for remission has been hard.  It has been easy to just "forget" the rough times, the pain, the misery, and the constant stench of fear.  I had locked it tight in a closet hoping to never open that door, however God had other plans and decided that I needed to use those memories and heart aches to help others.  It is not always easy and sometimes I just don't want to do it.  Revisiting the memories that serve me so much pain is often as hard as fighting cancer itself, but I've never been a quitter...and I'm not going to start now.  I look at other prominent people in our society that have turned their heart ache into a cause, a reason for living and I want to be one of those people.

October 15, 2005

Six rounds down...11 to go and Dirty Harry continues to shrink each time!  Yipee!  According to Dr. H, Dirty Harry is less than 1 cm and chemo didn't go too badly either.  I was a little more tired than normal, but I didn't get the HUGE migraine that I normally do...that's because I decided to be smarter than the headache...and start taking medicine BEFORE it ever got a chance to be a pain in my neck...haha!  Literally.  It's been a few weeks since Jeff and I met our friends from NJ who just had the same surgery I did at the Washington Hospital Center.  I was SOOO nervous that day.  Afterall, the last time Jeff and I drove to DC I had a ten pound tumor in my stomach (just kidding..that was a "Phelpsism"...it wasn't 10 lbs...) and I was actually looking forward to having my stomach cut open!   Anyways, as soon as we pulled onto Irving St (The street the hospital is on) my heart started racing and I kept telling myself, "Marlena, you aren't losing any organs today."  We definitely had some major flashbacks as we walked off the elevator onto the second floor.  Walking by this particular large window, I remembered looking out of it, at the snow covered roof top each time I made a "lap" around the hall (and this was numerous times a day).  This time when I walked by, there wasn't any snow, just a wet rooftop...it was strange how "the scene" was different, but then again...it really wasn't.  We walked by the much loathed nurses station-not because I didn't like the nurses...I just didn't like "it"..maybe the whole shot thing....  Then we make the "Mecca" of all visits down memory lane....my old room.  Wow!  It was definitely emotional, but I was glad to see someone else's things in the room...and not mine.  Just being in the same hall brought back so many memories-some good, but mostly bad.  Remembering the JPs, the Chest Tubes, being stuck all the time, the rose colored puke bucket, and the IV poles....though it was sad and kinda depressing, it also showed me how far we have come.  Well, Jeff and I finally met our friends from NJ!  They are truly incredible people with incredible family and friends.  We were able to visit a while and spent the evening with our "yankee" friends in Baltimore.  (Sorry guys..but you are yankees)  And would you believe that they don't serve sweet tea up there?!!??  I mean..come on...it is only 4 hours away and at times you thought you were in a foreign country!  During dinner I leaned over to Jeff and said (in my best southern belle accent), "Honey, we aint in the south no moe."  With the amazement we drew from their accents and talking really fast-I'm without a doubt they got a good laugh at our slow drawl and terminology.  We LUV our NJ friends!  Though our visit was an emotional one-it was a good one for us as well.  I was able to visit a few old nurses of mine and show them I'm not really a mean person, and that it was all the medicine!!!  That excuse works in court doesn't it?  Smiles!  But I think most of all it reminded me that we aren't alone in this fight against cancer!

October 31, 2005

Happy Halloween!

Dirty Harry is having a liquidation sale.  That bas*?rd of a tumor is getting what he asked for...a kick in his diminutive hind-end!   God is being so good to us and I find myself almost hourly thanking him for his hand of protection over us.  I know that things have been pretty rough this year, but we never hit the bottom of rock bottom.   We came really close....but God held onto us.  Dirty Harry has continued to shrink-even after the "chemo shrinkage" time had passed (usually up to 4 days after chemo).  I guess it would be easy to say that IMMPower (my supplement) is helping it shrink, but I know in my heart that God has a lot to do with Dirty Harry going out of business!  If He's not shrinking DH, He's helping us figure ways to help it shrink, and He's giving us means to pay my increasing medical bills.  It is just amazing to see Him working in our lives.  I was so excited to read my guestbook today b/c one of my FAVORITE nurses from the Washington Hospital Center signed it.  She is the standard of good nurses and I think about her constantly!  She possesses these characteristics that make her more than just your nurse, she becomes your friend!  Thank you Michelle for helping me through a very rough time...and I still have plenty of Jolley Ranchers for ya!  I can't wait to go back up there just so I can have her as a nurse again!  A good friend of mine, during our lunch date, told me to remember when you help others, you are also helping yourself.  That is so TRUE!  When I'm helping my fellow survivors, I forget all about my problems and Dirty Harry.  I received a post card from Locks of Love in the mail today.  Click here to see the card!  I had given them all of my long blond hair (sigh) when I was first diagnosed.  I wonder if they would let me have it back and I can use super glue to put it back on my head!  I am beginning to desperately miss my hair..only the hair on my head...I don't miss shaving my legs!  I miss being able to feel it on the back of my neck and being able to wear ponytails and messy buns.  But I try to keep telling myself that if hair loss is the worst of my problems, I'm doing really well!  I'm off to bed, I've got chemo tomorrow!

November 1, 2005

As of this Friday, 7 rounds down and 10 to go!  Yippeee!  My visit with the doctor went well, I officially weigh 114.8 lbs (that is 2.8 heavier than before!)  It must have been all of those buffalo wings and beer....but lets not tell the doctor about that one.  hahahaha!  I know what you are thinking....you shouldn't be drinking while on chemo...but Dr. H said that I could have a sip here and there, so I think that if I save my "here and there" sips that makes a glass or two of beer!  Right?  I still have 3 more days of treatment and once again it kinda hit me hard.  I've just become a lot more tired that when I first started chemo, but from what I understand that normally happens.  Jeff is now giving me my arensp and neulasta shots at home b/c our insurance company is having us pay 20% of the cost of the shot if we have it given in the office.  Arensp costs $602.40 and Neulasta costs $2087.00.  Yes, you are reading the prices correctly..we pay 20% of each...RIDICULES isn't it.  Especially if I take a written prescription to CVS and only pay $30 for Jeff to give it.  For a guy who usually faints at the sight of blood and needles-he does a great job giving me shots!  I am truly blessed to have such a wonderful husband!  

November 4, 2005

Officially I'm 7 down and 10 to go...pretty soon I'll be in single digits!  Yipee!  Today was definitely a difficult day because it was the last day of my four day treatment and by that time I'm just wiped out.  I had a great friend along with me on my treatment who constantly kept telling me..."Marlena, you are going to beat this thing....I just have a feeling about it."  I think we all need cheerleaders like that, and I'm so blessed to have MANY cheerleaders.  I have also been blessed lately with the finding of several friends who are also battling DSRCT.  Camaraderie can not be explained, only experienced, and since talking to Tarae and Nathan's mother I feel like it's now 3 against Dirty Harry and not just one on one.   

Babies!  Babies!  Babies!  They just seem to be popping out from everywhere, and those that don't currently have a living poop factory have one coming on the way!  I want my own 2-legged poop factory and some days it is just hard to even see that happening.  I pray each night that God will give me peace and patience because I know that if it is in his will for me to change poopy diapers...he'll make it happen.  After all, look at all the blessings God has bestowed upon us this past year-An incredible surgeon, 3 fantastic oncologists, a shrinking CT scan...the list goes on and on.  I guess the hard part for me is just waiting....especially when you have been waiting for something this special for so long.  God, I know you hear me!

November 11, 2005

Fall is finally here and my head is  not so happy about it.  I personally LOVE fall, but I never realized how cold it could be when you don't have hair.  Now don't think I'm an idiot traipsing around without a stocking cap...I'm beginning to make a wardrobe of them...but a stocking cap doesn't cover that 4 inch section between your head and your shoulders...you got it...your neck!  I know what you're thinking...."girl, don't trifle, get a scarf!"  Well, I've got plenty and I really like scarves, but so does my puppy Chance and he REALLY loves to rip them off (especially when they are wrapped around my neck!).  I was chatting with a fellow cancer survivor about making sure we wouldn't have chemo near Christmas.  She had fervently decided that she was taking the month of December off to enjoy the holidays, and had informed her oncologist who was not too pleased with her idea.  Well, that got my wheels turning.  At my current rate, I will be finished with chemo at the beginning of June (this does NOT include stem cell).  Now, most of you know that I'm an athlete and competitor at heart, and when I look at my current chemo schedule I would be finishing on an average pace.  Average is not good enough for me.  It just isn't.  I got back to running before they said I could, I bounce back from each chemo round before they say I should, and I'm drinking beer before they said I should be able to.  My conclusion...I'm going to lessen the time between treatments so that I can be finished with chemo and my stem cell before my 3rd anniversary (June 21).  This means I need to be done with chemo at the beginning of May, so I'm going to inform my oncologist that he will be shortening the time frame between treatments.  I'm not too sure how he'll take this...he'll probably sigh and say, "Marlena, I don't think this is a good idea."  But he says that about EVERYTHING I do!   My next appointment is on the 28th...so I'll let you guys know how it goes!

November 23, 2005

So, I'm walking into Blockbuster to rent some videos for the holiday weekend when this random guy comes up to me and says, "Excuse me ma'am, do you happen to be single?"  I'm dumb-founded, even flabbergasted.  I barely manage to get out the fumbled words, "I'm married, but thank you." when I realize this guy couldn't tell I have cancer.  I always feel like I'm walking around with a huge sign on my back that says "Hello, my name is Cancer.  No, it's not contagious."  But anyways, back to my story.  So here is this guy (who wasn't bad looking) hitting on ME...a girl with plastic BarbieDoll hair and penciled in eyebrows.  Man, I must look good in my wig!  Smiles!   I have to admit- it made my day, mostly because now I know I don't look like a walking cancer freak show.  Jeff is always telling me how beautiful I am, but the poor guy has on rose-colored glasses.  I must have blinded him with my iridescent charm...hahahaha!....cuz this girl don't have NO hair and she has black football player circles under her eyes.  I'm getting off track again...well, to have a complete stranger "come on" to me more or less validated (for the time being) that I look "normal"....whatever that means.  As self-absorbed as this may sound...It was extraordinary to feel "Gisele Bunchen-ish"-even with a 2 foot scar, no hair, and a 3rd boob (my port)!  God is good! SMiles!  Now if Cousin It could just take a hike.....Happy Thanksgiving!

November 26, 2005

Jeff felt the Dirty Harry lymph node on my neck and it has shrunk some more!  Yipee Skippee!  Now I know that my CT scan in January is going to look good and I'm going to continue on my goal of having Dirty Harry "unfeelable" on my neck before Christmas...which leaves two more treatments for the chemo to get it DONE!  I have treatment on Monday.....

  Hope everyone had a great Thanksgiving.  I ate plenty and hope (and pray) that it helped me put on some weight.  I never thought in a million years I would try to gain weight...haha!  But it was also nice to spend time with family and be thankful for the year we've had...I know what some of you are thinking..."Be thankful for the year from h*ll?"  And yes, that is exactly what I'm thankful for...even though it has been difficult beyond words it has also been rewarding.  We've lost a lot, but we've also gained a lot.  We've gained a new appreciation and understanding of life; and we will live fuller lives thanks to cancer because now we truly know what we have to lose.  

December 4, 2005

I'm officially on single digits!  NINE treatments left!  We are getting there...slowly but surely...but we are getting there.  Last chemo round went okay.  It was my one day treatment and it seems as though the short ones are the hardest to recover from.  I had acid indigestion from you know where.  Dirty Harry is almost "unfeelable".  Basically, if you prod around my neck you might feel a little something and it is hard to tell whether or not it is a muscle in my neck or Dirty Harry trying for one last "hurrah".  Jerk.  He's a feisty lil' thing...but I'll get him in the end.  I gained 4 pounds since my last treatment...the Dr. is off my back (FINALLY!) about gaining weight.  So, of course, I decided to push the envelope just a little to see if I could push up my next treatment to miss Christmas...and maybe to do it all the time.  Well, to make a long story short, he wasn't so pleased with the idea.  Dr. H scrunched up his face, sighed and said, "Marlena...I just don't know.  I just don't think it's a good idea."  HA!  What does he know, right?  Basically the jest is that he doesn't think that my white cell count will have enough time to recover from chemo, but he was willing to try it early under the condition that my counts were not low.  In "Marlena Terms" that means that I'm going to have to take it "easy" and not push myself...so I guess jogging is out of the question.  The funny thing is that the first thing Dr. H always (and I do mean ALWAYS) asks is "So, have you been running?".  Like its a crime or something...and of course I say "No, I've been walking like you told me to."  While sitting in the chair getting my poison of choice I get a great idea.  I think I will  make a point this coming week to go jogging, twice, just so I can say "Yes, actually I've been running...how do ya like them apples?" HAHAHAHAHA!   We will see what happens, but it would be pretty sweet to go into the Dr's office a week early for chemo, with great blood counts and running under my belt...don't you think?

December 7, 2005

Chemo Queen went running today.  1.5 miles!  Dr. H sure is going to like those apples!  HA!  And not to fear, I plan on running again before I go back on Monday for chemo.  I've also lifted weights several times this week....I just love to show my doctor up.  Smiles!  (In case no one could tell)

December 19,2005

I will never, ever, EVER ask for chemo early EVER again!  Holy COW!  That had to be the hardest week of chemo I have had since JUNE!  And the weird thing is that my blood counts were just as good if not better then last chemo round.  Man, Dr. H isn't right about much, but he was right about not doing chemo earlier than scheduled.  So for those who are keeping score, point for Dr. H and no points for me.  So it's not often that I use "chemo" as a levy to get what I want/need, but I did use it last week...several times.  My poor favorite father-in-law (click on father-in-law to see photo), anyways, we were in the middle of an ice storm and Dianne needed her car cleaned off before we left to go home (she was with me for treatment that day).  What individual do we know that has the world's most flexible "caring" schedule....good ol' Tom.  So I told Dianne that I would take care of things and I gave my favorite father in law a call.  Yes, I did use the most pathetic, sickly voice I could muster...but it wasn't ALL fake...I was sick...really I was.  I got Tom on the phone and told him how "not so good" I was feeling and that poor Dianne's car was all iced up and we were stuck.  Oh yeah...I did mention that I could use a grilled cheese sandwich from Dairy Queen and that Dianne was hungry too.  Tom, what a team player...."I'm on my way!"  And for those who don't know the end of the story, yes-the car was de-iced and yes-I got a grilled cheese sandwich for lunch from Dairy Queen.  

As of now, I'm nine treatments down and eight to go!  My next treatment, which is the one day treatment, is on January 3 and a CT scan will be scheduled for the following week.  Dirty Harry sure did mess with the wrong girl and I can't wait to hear Dr. H's synopsis of my CT next month, "Well, we don't see anything!"

December 22, 2005

It's official...Dirty Harry is GONE!!!  Jeff checked my neck this evening and could not find the little piece of sh...oops...my potty mouth got away from me.  What a great feeling!  I had it in my head that I wanted him to be "unfeelable" by Christmas or by the time I was half way through my protocol and I did both of them.  Of all the accomplishments to date, I have to say that I'm most proud of destroying Dirty Harry.  Man, I can't wait until New Years!  We have plenty of celebrating to do and getting sh*t faced is on the top of the list....oops...potty mouth again..sorry I'm just so excited...Anyways...the drink of the night is called Dirty Harry goes to H*%l.  It's going to be a jello shooter specially made for the occasion.  I'll post some pics of it after New Years...and for you crazy party animals...I'll even post the recipe. 

Christmas has always been a time of refection for me and I've spent a lot of time just thinking about the year and how truly blessed we've been.  Granted, this year started out REALLY rough, but we are ending it on a high note, because I'm convinced that 2006 is going to be our year of great accomplishments.  I'm so grateful for our family (church family included) that has supported us through it all.  We are so lucky to have family and friends to call on, at a drop of a hat, and know that they are there to listen, to cry with us, and help us with the little things that become quite burdensome during chemo.  We've had people clean our house, bring us food, babysit me, send us cards (and boy do I LOVE to get cards), take me to chemo and visit....these things have meant so much to the both of us and I hope that we have been gracious recipients of everyone's heartfelt generosity and love.  When I look back on 2005 I see a lot of heartache, but I also see a lot of triumph and I see that God has had his hand on us the entire time.  The poem Footprints by Margaret Powers (Thanks Elaine!)sums it all, "'My precious child, love you and will never leave you-never, ever, during your trails and testings.  When you saw only one set of footprints, it was then that I carried you.'"  God carried us through this year, and our family and friends carried us; for that we will be eternally grateful.  Thank you and Merry Christmas!

My Blockbuster Benefactor

I guess one advantage to having chemo is that you get to watch a TON of movies.  As you probably have read, I go to Blockbuster...A LOT.  But what many of you may not know is that I have a Blockbuster Benefactor.  He has been supplying me with these great coupons to get movies and he is a true saint in my book.  I know, you guys are jealous...don't be hating...just make sure you go rent movies from Blockbuster so that we can keep my Benefactor in his job!  (That and I really like the coupons!)

Blockbuster.com

January 1, 2006

Happy New Year!  2006 is going be Jeff and Marlena’s year.  I can just feel it!  Jeff and I just got back from a fantastic trip to Florida to visit my brother and his girlfriend.  The weather was wonderful and we had two incredible tour guides who showed us around.  We did the very touristy thing of visiting the Ron Jon surf shop and walked on Daytona, Cocoa, and Sebastian Inlet beaches.  It was just great to hang out with the two of them.  We met their adopted Florida family who made a seafood feast fit for royalty and I ate my first muscles and clams…and yes they were really good.  I never, ever thought I’d say that.  One of our nights we went to a bar and shot some pool.  I almost beat Jeff at a game…must be all that chemo making me a pool shark!  HAHAHA!

Dirty Harry Shot Recipe

New Years Pics!

January 2, 2006

I started seeing a flash of light in my eye today and within seconds I had self diagnosed myself with metastasized DSRCT of the eyeball.  I’m sure the eye doctor thought I was a looney bin and I felt terrible for Jeff as he had to listen to my off the wall nervous break down from the comfort of his cubicle at work.  Yes that is right, a complete break down over a few flashes of light from my eyeball.  I am constantly amazed at my mental capacity to make almost ANYTHING into metastasized DSRCT.  I hadn’t had an anxiety attack in weeks, but all it took was to hear the receptionist from the optometrist say that the doctor felt it was serious and needed to seem me ASAP.  Needless to say, the flashing light was not cancer related, just an ocular migraine possibly caused by my chemotherapy.  The optometrist was a true gem and calmed my fears without making me feel like a needed a shrink.  However, the whole episode got me thinking…. Will I ever get passed January 6, 2005?  I used to think, “Sure.  No problem.” But after today I’m just not too sure.  It doesn’t take much anymore to send me into a tornado of emotions, flashbacks, and a complete panic.  Every stomach ache and every cramp brings the thought, “Is he back?”  Granted, I’ve tried to maintain the “I’ve beat the shit out of this thing and that is it.  It’s done.  Over!  I WON!”  But there are times in which Mr. Doubt sneaks into my brain and I begin to panic.  I guess the pathetic thing of it all (to me) is that once its all over and the “crisis” has been attributed to something other than Dirty Harry I look back and feel so foolish.  After which I will spend hours scolding myself at my unfounded and absurd obsession-like behavior over the fear of Dirty Harry winning the war.  Am I crazy?  Am I loosing my faith in God that He will lead me across the finish line victorious over DH?  Does every Survivor go through this?  Is this normal?

P.S.  Chemo is tomorrow and CT next week!  Please pray for a clear result!

January 6, 2006

It amazes me how one measly day, one hour, or even one minute can define the rest of your life with the whisper of one word, “cancer”.  January 6, 2005 was a pivotal turning point in my life.  Anyone who has experienced cancer knows the feeling of “that” day down to “that” minute where cancer officially becomes part of your everyday vocabulary.  Lets be real, there is nothing great about cancer.  Sure, I seem to manage to spin the situation into a positive one, but when one gets down to the “real deal”-it sucks.  I wonder sometimes if my mentality of staying positive is a façade of how I truly feel inside.  But then again, if it is a façade who really cares as long as it keeps me sane right?  It amuses me sometimes when I think about my conversations with other people and how I still rarely use the word “cancer”; even a year later.  I sometimes feel like the word “cancer” is one of those potty-mouth words that people become offended by, therefore I often use the phrase “before I got sick”.  So does that make me weak?  Does it make me ashamed of my disease?  I’ve been told that I’m an inspiration to others, yet I still have difficulty using the correct term for my illness.  I still cannot say without hesitation, “I have cancer.” and that simple fact alone makes me question myself as to why am I ashamed?  Yes, I said, ASHAMED.  I didn’t choose cancer, and I don’t know anyone who would.  Am I ashamed because having this illness portrays weakness?  Sure.  I don’t want people to see me weak and afraid.  I certainly don’t want people to see my vulnerability and my fear of the future.  Everyone has vulnerabilities and fears for the future; I guess mine are just a little more obvious to the world. 

As I wrap up Year One as a cancer survivor, yes I said survivor because I will NOT be a victim, I look back at the accomplishments I have made along with making goals for Year Two.  Proud doesn’t begin to describe how I feel about my Year One accomplishments.  I have survived the “Mother of All Surgeries” (FYI: did you know that there is only one other surgery more harrowing than the one I had…the separation of Siamese twins!), got back to running in less time than the doctors thought, and (I can honestly say) I have gotten back my life.  Granted, I have treatments every three weeks, I don’t work, and there are the regular CTs-but when you really get down to it my cancer is my job and as Jeff put it “If we weren’t scheduling things around your treatments, we’d be scheduling them around our jobs.”  When we really thought about it, cancer has not stopped us from doing anything, and that is what I am most proud of! 

So what are my goals? 

1. To successfully finish my treatments (7 to go). 
2. To have “as complication free” as possible stem cell transplant 
3. To get rid of Cousin It (when the timing is right which means I may have to practice the “Patience Lesson” God taught me last year.
4. Complete my book
5. Have conclusively clean CT scans
6. REMISSION

January 12, 2006

Independence...OH! Sweet Independence

I am systematically reminded how much I used to take for granted pre-Dirty Harry.  I used to believe that most things in life-such as independence, love, health and happiness were rights in which every human was entitled to; I no longer believe that is the case.  Anything one receives in life-whether it good health or happiness-is a gift from God.  Well, today God gave me back some of my independence as I took myself to my CT scan today...ALL BY MYSELF!  It was the first time in over a year that I went to a scan without anyone else taking me, and boy am I proud!  I even drank that nasty barium without too much complaining...and NO I didn't drink both bottles...I"m not a lush!  I'm even more proud of the fact that I didn't have my normal anxiety breakdown on the table during the scan.  A lil' anxiety tried to sneak his ugly face in my brain, but I remembered a verse Arthur from Sunday School told me   Matthew 21:22  And whatever things you ask in prayer, believe, you will receive.  So I prayed to God thanking him for a good and hopefully clear CT scan.  After that prayer I felt a calm that I have never felt during a test and after that I had little doubt about the results coming back in our favor.  

Oh yeah...my hair is playing mean tricks on me...I'm now Mrs. Clean.  For those who didn't know, I used to have a nice set of fuzz on my head-but after this last round my scalp is as slick and shiny and Mr. Clean.  Oh well!  Smiles!

January 17, 2006

Well the results are in and I've NEVER seen Dr. H smile about my test results.  It was a REALLY good scan and I'm a measly 3 cm (the size of a half dollar coin) away from being clear.  Here's the breakdown:  All of my lymph nodes, liver, kidney, lungs, and pancreas are NED (no evidence of disease).  On my bladder is a small half-dollar size cyst that has shrunk significantly.  It can't be said for sure that it is cancer nor can it be said for sure that it isn't...we have decided to lean on the side of caution and attack it as though it were Dirty Harry.  I'm definitely excited about my result, but I'd be a liar to say I wasn't initially disappointed by them; mostly because I desperately wanted this CT to be clear.  But in the grand scheme of things this was just a few cm from clear so the next CT will be NED!  I just know it!  Chemo this time is going well, even though we had a lil' scare with some chest pains...the Drs thought it might be a blood clot and they wanted to run some scans.  SO OF COURSE, I automatically diagnose myself with metastasized DSRCT of the blood clots...but not to fear..all the tests came back negative...must have been some gas!  HAHAHA!  Now my big plans are to finish round 11 (6 more to go!) and begin getting my stem cell treatment, doctor, and hospital set up.  I think we are going to go for the gold...Memorial Sloan Kettering in NY, NY!  Jeff will be a Yankee for a month...imagine that.  Any Yankees out there with some "HOw to make a southern boy fit in with Yankees" advice? 

Please continue to pray for all those who are fighting cancer.  Steven has a PET scan coming up and will be doing a stem cell soon.  And Stephanie has had great results from her tumor markers and is hanging in there with her favorite poison of choice this week.  Love ya Steph!

January 24, 2006

Well, I’ve officially started A Feisty Girl’s Guide To Cancer.  I never realized how emotionally difficult it would be to write it.  As I go through old journals, I feel like I’m scratching open sores that were almost healed, and remembering how things were this time last year almost petrifies me with fear.  I guess because I’ve been to “that” point where you have to make the decision to fight for your life.  It’s a decision that most people don’t have to consciously make because their life isn’t openly threatened…make sense?  Anyways, I’m also amazed at how, through this journey, there were always verses from the Bible to give me comfort and hope.  And a lot of my verses came from my extended family (New Beginnings at TUMC), I don’t even want to imagine our lives without them! 

Jeff and I have begun the task of contacting MSKCC (Sloan Kettering) and Dr. Kushner.  I’m waiting for a clinical summary from my oncologist to send to MSKCC and then we will have to wait to see if Dr. K thinks I’ll be a good candidate for a stem-cell transplant or possibly vaccine trials.  He’d really be missing out on a “one of a kind” gal if he were to turn me down…after all…how many chemo patients do you know that go walking 2 miles just TWO days after chemo?  Not many!  Smiles.  I take a lickin’ and keep on tickin’…is that how it goes?  Well we are just leaving it in God’s hands and praying that he will lead us in the right direction as to where to go next in our war against Dirty Harry. 

January 30, 2006

I forgot to mention that I gave myself my Neulasta shot last week....well kinda...let me explain.  First of all I have, like most humans out there, a phobia of needles and after my extended (this word is used loosely) stay at the Washington Hospital Center with blood draws DAILY I think it is easy to say that the mere sight of a needle makes me shake and quite ill.  Now you would think after a year of needles I would be used to it...not a chance!  So just the idea of sticking myself with a shot took literally WEEKS of "courage finding".  Well, Jeff and I get the hair brained idea that I'm going to conquer this fear and give myself my own shot.  After about fifteen minutes of "aiming" at my leg I finally stick myself.  You would think that would be the end right?  That I just pushed the fluid in and that it was a very happy ending?  HA!  That's a good one.  I finally get the needle in and I freaked.  So here's the scene...I'm on the couch with a needle sticking in my leg, panicking for Jeff to finish the shot.  "I can't do it!"  But hey, it was a big step for me just to stick myself with a needle!  

Anyways, this 4 day round (from Jan 17)  wasn't so bad at all.  I've added a new supplement to my ImmPower regimen- Astragulus Root- and I definitely saw a difference in how I felt...especially with the stomach!  We are still waiting by the phones (literally) for MSKCC to call and say "Come to NYC!"...keep those fingers crossed!

February 13, 2006

12 rounds down...5 to go!

It's funny how things don't always turn out the way you thought they would.  Or how you think that this "one thing" is the only path to choose when God actually has a completely different plan.  It's amazing how some things in life can be so difficult to accomplish, yet some paths that He has intended for you-which should be difficult-end up being a breeze.  Jeff and I have had a simple prayer request lately; that our next step be "easily obvious".  That prayer was answer, just not the way we thought it would be.  It's funny how things don't always turn out the way you thought they would, but it's glorious when God shows you the path to go.

We did finally hear from MSKCC, and the phone call was not what we expected.  It was short, to the point, and offered us very little advice.  Even more disappointing was being told NOT to come to NYC.  I can't say that I took the news well, after all I had my sights set on them from day one, but that phone conversation would not be an "end all".  On the side I'd been talking to Duke University about their Transplant program and within a week and 1/2 I had all the information I needed from them, a consult set, medical records sent, and an appointment for my siblings to be HLA typed.  It's funny how things sometimes become just "easily obvious".  

We have a consult with Duke Univ. Pediatric (yes pediatric) bone marrow/stem cell transplant unit on March 3....so some prayers are definitely needed because I am still quite "jaded" from my Sugarbaker Consult from last year.  I wonder sometimes which one has been more difficult to recover from, the Sugarbaker Surgery or the Sugarbaker Consult....  Next week I will have round 13 of chemo, and it is hard to believe that we are almost done.  I will also be getting an MRI done this week for Duke and I'm quite nervous about the results...which I'll get on Monday...hopefully.  Wouldn't it be a great Valentine's Day present to have the cyst gone?  Here's to praying for miracles!

February 28, 2006

FOUR ROUNDS TO GO!!!  Wow that is so hard to believe.  Some days it feels like these rounds just fly by...but then there are days where it seems like each minute is really 10 years in time.  Well Friday is the big day and I'm excited and very nervous.  My biggest fear is the doctor saying, "Marlena, I'm sorry but we can't help you.  Go home.".  I know...it sounds ridiculous....what can I say?  This last chemo round was rough.  For three days after my treatment(4 day treatment) I just stayed on the couch and ate ice cream, cereal, and hotdogs.  I get the weirdest "after-chemo" cravings.  I try my best to eat healthy, but sometimes a girl just has to give into the alluring whims of junk food.  After all, I had lost 4 pounds and I needed to gain those back.    Oh yeah!  Before I forget!  On Valentines Day I had my MRI and I got the results last week.  There is absolutely no sign of Dirty Harry anywhere except for his "luggage" on my bladder which is the cyst and a nodule they are thinking is dead tissue.  And for those who really know me well I was initially disappointed that it wasn't completely clear but I've had time to "assess the situation".  The way I look at it now is that Dirty Harry has left a lil' luggage and we are going to get rid of it.  I talked to Duke about my desire to have the luggage surgically removed and surgery was on the top of my agenda...I'm interested to see what they come up with.  Until then...

March 5, 2006

Well, the consult today went better than I could have dreamed!  Dr. Driscoll has to be the kindest (and smartest) doctor I have ever met and we were thoroughly impressed with all the research he has done for just my case.  It was amazing.  And Danielle, the nurse whose working with me, is the Mother Theresa of nurses!  I truly feel blessed to have them as my doctors.  Everyone at the University was kind and compassionate; they even joked around with me!  SmilesSo I know that you are dieing for the news.  First, I ended up having 2 possible matches out of my six siblings.  It was "hopeful" to find one, a just a plain MIRACLE they found two.  (I know of a family of 13 siblings and they didn't find a match)  Duke will do further testing on these two matches to "double check" the match and to see which one is the better match.  It ended up that the brother I was hoping to be a match was an HLA match as well my sister.  Benjamin and Eleni are the lucky candidates.  I'm glad that Benjamin was on because he is the oldest brother that still lives in town, and I didn't want to have my oldest two brothers to have to come up from Florida to help lil' ol' me out.   Dr. Driscoll is definitely going for the donor stem cell match and will be getting their stem cells through the bone marrow (stem cells are "baby cells" before they become white or red cells.  Stem cells are made in the bone marrow).  As of now it looks like I will have about a 6-8 week stay in the hospital pediatric transplant unit and then an additional 2 month stay in Durham.  That was a bit of a shock knowing that I will be away from home for that long...4 months!!! I'm going to miss everyone sooo much!   We are going to have to rely heavily on family to "babysit" me in order for Jeff to get "breathers" from the hospital as well as being able to go to work.  I have to have someone with me at all times....makes me feel like a child all over again.  But that's what it needs to be in order to finish this.  The best part of the pediatric ward?  They have craft time, bingo time, and you get beads for every so many laps you do around the ward.  The beads go on a shoelace that is attached to your IV pole.  Smiles.  FUN TIMES!  The time line right now looks like I'll be heading for transplant around May/June and will have extensive testing next week and again in May.  The reason for waiting until May is because....get ready this is the best part...Cousin It is getting reversed!  YIPPEEE!   I will have my reversal surgery probably in the next two-three weeks and then I have to have some time to recover and have one chemo round without ol' Cousin It.  (For those who don't know...Cousin It is my iliostomy).  During the surgery they may go "look around" to see if there are any visible tumors.  I will have a PET scan on Tuesday and if the spots on my bladder light up on the scan....they will remove those during this surgery as well.  A lot depends on this PET scan on Tuesday so lots of prayers for NO LIGHT UPS!!!  Well I think that is it....the last mile in my ten-miler is almost here!

March 8, 2006
Well, I think I can speak for both Jeff and myself when I say we are officially OVERWHELMED! My two days of testing went well: On Monday I had a GFR (Kidney test) and on Tuesday I had two heart tests, a lung function test, and a PET/CT scan. This morning I received a call from Duke saying they needed me to come back down on Thursday and Friday for additional testing. On my PET scan they see what they think is a fistula (a small pocket of fluid that connects two organs together, often the result of a BIG surgery) behind my bladder. Whether or not this is the original cyst...we dunno. So on Thursday I go back to Duke for another CT scan and other "invasive" tests (sticking things where things should be ILLEGAL to stick). I also have to have a line in my port (a thing in my chest they use to give me chemo) fixed because one of the lines sits too low...grrr. We will try to keep everyone updated through my website. I apologize for not returning people's emails right now, we are just extremely busy. Between Jeff's new job (which is becoming very demanding lately), the duplex renovation (trying to finish before the transplant), testing at Duke, and then regular chemo....it's just a little crazy. Please pray for some sanity our way! Smiles. Thanks again for all the understanding and support! We'll inform you guys when we know something which probably won't be until Thursday night or Friday.  I did find out that after some careful consideration Cousin It will be staying with me for a little longer.  The doctors felt that there would be too much risk for mucositus to attack the "hook up" area during the time my counts are very low after transplant causing some pretty severe problems...yes I was very disappointed but what can I say right?  OH!  And for those who don't know...they are planning to do an allogenic transplant-which means a transplant using a siblings stem cells taken from their bone marrow.  Also, it has been decided that Jeff will be a granulocyte (white cell) donor during the time that my white cell count hits rock bottom after the transplant.  He will have to have a central line put in his chest (can you imagine?) and be "harvested" twice a week.  I know that Jeff will do fine b/c he seems to have a way with the female nurses....they will do just about anything for him!  Jeff's not too thrilled about a central line b/c he's squeamish about things plus he will be giving himself shots to boost his white count in between harvests....it's just a lot for him all at once...please keep him in your prayers.  Will update tomorrow night or Friday morning when we know more!

March 9, 2006

What a morning!  I had to get up at 3:30 to be down at Duke at 7 am...that's an early wake-up call.  I had the lovely testing done and the radiologist that worked with me was just an angel.  She told me that I now had a personal radiologist-so I'm to let my doctors when I need a test done to have Caroline H do it.  The test itself was pretty embarrassing...nothing like having tubes put in places that are intended as "one way streets".  They were unable to find the fistula, and according to the radiologist that happens in about 50% of the cases.  Had I not had my Sugarbaker surgery or a history of cancer they probably wouldn't have even gone through with the scan they did today.  The radiologist also told me she would strongly suggest to Dr. Driscoll not to do further testing b/c it would not produce any further information.  Now the big question is what to do about the gas in my bladder (caused by the fistula), in most cases they would just leave it be...so we will see.... I also had the lovely opportunity to discuss with the incredibly nice radiologist the "cystic mass" on my bladder.  I wasn't too sure I wanted to hear what she had to say, but she did go over my PET scan and she said that it didn't light up.  So for those who don't know what that means....it means the cyst is NOT cancer!!!!!!  The recommendation to my doctors is not to have it surgically removed and if it posed a possible problem during transplant to have it drained.  YIPPPPEEE!!!  Also, I asked about the nodule that had also been seen on my bladder....her reply was, "What nodule?"  All smiles here!  Will keep everyone updated after I get my call this evening or tomorrow morning.  Thank you for the prayers....it is quite evident they are working...God has been good to us!

March 11, 2006

Finally, I've had a few days off from testing.  Now I know what it's like to be a lab animal-poked and prodded until you're black-n-blue all over.  Definitely not the career field for me.  My nurse coordinator has not gotten back to me, which means no big decisions have been made.  I told her in our last conversation not to worry herself over calling me every few hours for an "update"...just to give me a ring when we have an idea for a PLAN!  So now we just sit and wait....and believe it or not I'm rather calm about it all...scary though I know!  Duke has been good to us and I haven't a single doubt that they are going to figure out the best way to go about everything; and that is a good feeling to trust your doctors that much-b/c that hasn't always been the case for us.  I'm also still in shock from the great news of the cyst not lighting up on the PET scan...I mean can you believe it?  Every time I think about it I get that "funny lil' feeling" in my stomach...the good kind...like butterflies on your first date!  I love that feeling!  

March 14, 2006

Well, it looks like today's chemo may be my last before transplant!  EEEE!!!!!!  Yipeeeee!!!!  In case anyone couldn't tell, I'm just slightly elated about it all!  I heard from Duke yesterday, and after additional testing they confirmed that Eleni and Benjamin are identical matches to me.  Duke was just tickled because the chance for each sibling to be my donor was 25% (per sibling) and due to the fact that my parents didn't know when to say "enough"...the chance of finding one identical match in my family was about 80%, and Duke was not expecting to find two identical matches...so they were quite pleased with the situation.  Benjamin is the "first choice" and Eleni is the "spare".  Ben's just hoping we can plan it around prom and soccer playoffs...what can I say...smiles!  I've also been informed that since Ben's DNA is so smart, he'll be charging for his services and it's not by the ounce...it's by the cell.  I'm just hoping that I'll grow a little taller after getting his bone marrow (he's 6'3 and I'm a measly 5'8..when I stretch really hard).  Today Benjamin, Eleni, and Jeff will have 17 little tubes of blood pulled today so Duke can look for viruses.  For those who don't know, Jeff is my granulocyte donor (white cells)   Check out March 8th entry for more info. 

Well, this will be my last entry from this journal.  I will be continuing my journal on CaringBridge because things are now getting VERY busy with lots of travel back and forth to Duke.  I can update the CaringBridge site from any computer, where I can only update this website from my home computer.  Below is the link and it will also be listed on the main page of my website...but not to fear...nothing will change and as soon as I'm home everything will be put "back to normal".  

CaringBridge Site

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