Wednesday, December 31, 2014

I Survived 2014!!




I really can't believe this year is already at an end.  As I look back and think of all that has happened during the past 365 days, I find it absolutely amazing that I am where I am today.  December 31, 2014 and I am feeling fantastic!! Nine chemo sessions, losing my hair (twice), two PET scans, excisional biopsy (again), Stem-Cell Harvest (which included Neupogen shots that I had to give myself twice a day), Stem-Cell Transplant (which included 18 chemo infusions and an 18 day hospital stay), placement of a central line, and surgery to remove my port.  WHEW!!

And the emotional roller coaster this year brought to us.  Let us not forget how in February my CT scan showed that I was in remission, which caused much happiness and plans for a No More Cancer Party.  I finished Chemo at the end of April and the party was May 10.  What a great day that was!!!  Such a great party and so many friends and family there to support and congratulate me.  We were the happiest we had been in such a long time!  But alas, the happiness would soon be overcome with fear.  Two weeks after the party, a PET scan confirmed that my cancer was still living and growing inside me.  Talk about going from the highest of highs to the lowest of lows!  Then, on November 7 we finally heard what we had been waiting to hear...NO MORE CANCER!!!!!  So we climbed back up the happy ladder and haven't come back down!!  I love it at the top of the happy ladder!!

I'm currently feeling better than I have felt since October, 2013.  I have started a new 90 Day Challenge (currently on day 24), and I have the strength and energy to push myself through the very challenging workouts.  I'm back to being my goofy, sarcastic self.  I actually find myself wanting to do things besides sit on the couch.  I love it.  Absolutely love where I am in life right now.

This year has taught me so much.
*Happiness comes from within.
*Our circumstances aren't the problem.  It is our response to those circumstances that determines the outcome.  Whether I sit around and throw a pity party because I have cancer or keep living life in spite of cancer is all under my control. 
*During our darkest times, our true friends will reveal themselves.
*I didn't realize how important my family and friends really were, what a true blessing they are in my life.  Because of everything I have had to endure this past year, I now know that without these people in my life things would be so much harder.   We all need love and support, and we find this in our family and friends.  *People want to help, you just have to let them.  Accepting help is a must.
*You may be inspiring people without knowing, and providing hope to some who may be going through hard times themselves.
*The world doesn't stop because we have an illness.  The world doesn't care.  So you have to find a way to keep going.  To keep living.  To keep loving.  To stay positive.  That way is through prayer and faith in Jesus Christ. 

I want to say THANK YOU to all of you who took time out of your lives and supported me and stood by me through everything.  You all have made a huge difference in my life, every one of you.  So many acts of kindness have been shown to me over this last year that I am sincerely humbled.  You have all proven to me that there really is still good in this world. 






































































Tuesday, December 23, 2014

The Blog Must Go On

 
I've been tossing around whether or not to continue this blog or call it quits.  I mean, It's a blog about cancer, Lymphoma specifically, and my journey with everything that having Lymphoma entails.  On November 7 I was told my scan was all clear and that I was in remission.  So, in my mind, my blog was finished.  I was all clear so what else could I possibly write about?  

Last week I was at a training and a fellow Probation Officer came up to me afterwards and encouraged me to continue writing.  I said, "I don't know what I would write about now."  She responded, "ANYTHING!  I love reading your blog!  Just let us know what's going on now!"  Then yesterday I was told by some co-workers that I needed to keep writing.  I went home and thought about this for a bit.  And as I pondered the events of the last year since my diagnosis, of the last five months since my stem-cell transplant, of the last month and a half since I found out I was in remission, I concluded that my journey isn't even close to being over.  Things have happened since my last post that could be related to all my treatment.  And I probably should write about that.  Mentally I still struggle, and I should probably write about that.  Having new life means having new goals, and I should probably write about that.  

Today I will write about my eyes.  Yes, my eyes.  I have had glasses/contacts since college.  Having poor vision is nothing new for me.  But, I started noticing some serious changes in mid-November.  My night vision was suddenly terrible, halo's around lights, dark circles in the center of lights, cars appeared to be coming at me in my lane.  Daytime wasn't any better.  Suddenly I couldn't read the words on my computer screen without getting literally right in front of it.  Double vision, shadow images, everything was really cloudy.  I could see better with my contacts (soft lenses) than with my glasses even though they were the same script.  Long story short, I ended up seeing some specialists in Evansville.  After two and a half days of tests, they finally determined that I have a disease called Keratoconus.  I was told the only way to correct this issue is to wear gas permeable contact lenses, and if it progresses, eventually a cornea transplant.  Ugh.  When the doctor left the room to get some lenses to practice with, the tears started falling.  I was thinking, "Are we serious?  I just went through hell and back and now I might one day have to have a cornea transplant?"  I asked if this could be a side effect of chemo or the stem-cell transplant, but the doctors couldn't answer my question.  They said that this is normally genetic, but just like my cancer no one else in my family has had this.  So, they can't really say why I have it, just that I have it and we have to deal with it and hope it doesn't progress.  They also told me they don't normally see this at my age, that it normally appears in the early 20's.  Well, I missed that deadline by about 15 years.  
 

I have now had my new gas permeable lenses two and a half weeks.  Those first two weeks...OMG!!!!!!  I literally wanted to claw my eyes out.  I couldn't deal.  I was miserable and they made me grouchy (just ask Jeremy.  He'll tell ya all about it).  My eye doctor told me that it would take about two weeks to get used to them and he wasn't exaggerating.  This week I have finally been able to function without constantly thinking that life would be just fine blurry.  Actually, I don't notice that I have the contacts in much at all anymore until the evening.  Then they MUST come out.  

A month ago I was so angry and frustrated over the whole situation.  I felt like I might never see a day where I wasn't in some sort of doctors office having tests run.  I was over it.  Completely over it all.  Today I'm much better and extremely thankful that these ridiculously annoying contacts exist.  Without them I wouldn't be able to see this well, and I would be facing a cornea transplant.  

If there is one thing I am learning, it's patience.  I'm learning that when the doctor tells you it will get better, just give it time, he is right.  I was told the stem-cell transplant side effects would get better, and they did.  I was told I would get used to these contacts, and I did.  I guess my problem isn't the waiting.  It's the crap I have to endure during the waiting process that causes me to freak out a little.  

So, there you have it.  My vision blog.  I can see clearly now.  And for that I'm thankful. 


Friday, November 28, 2014

I'VE BEEN DEPORTED!!

How I feel right now
As of about 10:00am this morning I am officially DONE with stupid cancer!!!  Port removal surgery was this morning and that damn thing is not inside me anymore!!!  It has been a part of me (literally) since November 18, 2013.  Now I can rub my neck without feeling a tube.  I can pick up my niece and when she pushes on my chest to get down (every.single.time) it will no longer hurt.  I can take a shower and wash my chest without feeling a big bump under my skin.  NO MORE NEEDLES IN MY CHEST!!! 
 
This is me so happy to be de-ported!!!
 
 
For me, today marks the official end of cancer treatment.  Yeah, I still have follow up appointments every few months for the next several years.  But I'm done with procedures.  I'm done being poked (which happened three times today:  once for labs and twice for IV line because, as the nurse put it, "Oh dang.  Can't use that.  Must have hit a valve in there or something.  Care if I poke you again?  So sorry that hurt so bad.).  I'm done being cut open (and today, I actually heard the doctor cutting me open.  It was weird.  And a little nauseating).  I'm done being injected.  I'M DONE!!!!!!!!
 
 
I told Jeremy that today I actually finally feel like celebrating.  I really feel like I've made it, I have survived cancer.  Getting that port out has made it real for me that I don't have to do anything else to get rid of stupid cancer.  It is gone and I am finally done with procedures.  FINALLY.  One year later and I can finally start making plans for the future.  One year later and I actually had a conversation with my husband about what's next.  And when he asked me that, without hesitation, I said, "Well, I'm going to register for a Spartan Race in May.  And in January I'm redoing my last challenge and starting Natalie's program again."  It felt so good to have that conversation.  It wasn't "I want to do this or I would like to do that but we have to wait and see "if."  Saying "I'm going to" feels great!  I don't have to wait and see anymore.  I can finally get back to my life.  Get back to being me!!!!
 
 
 
 
 
 

Friday, November 7, 2014

TODAY'S PET SCAN RESULTS

My post stem-cell PET scan happened this morning.  I met with Dr. Stephens and received the results this afternoon. 
 
 
 
In other words,
 
I'M IN COMPLETE REMISSION!!!!
 
IT WORKED!!!  THE TRANSPLANT WORKED!!!! 
 
What a year it has been!!!  But I finally did it!  I WON!!!!!!!!  I've been cut on, injected, poked, stuck, lost my hair (twice), infused with toxic chemicals, had a stem-cell transplant and a blood transfusion.  But I never gave up, even when it felt like I would never reach the finish line.  It took a year to get there, but today I reached that finish line.  Not only did I reach it, I crossed it.  In first place.  I WON!!!!

Wednesday, October 29, 2014

The Magic of Cancer (And The Beautiful Things We Have To Do) Part 2

On my last blog post, I posted video of the stem-cell collection process.  Tonight I finally finished editing the video of the actual stem-cell transplant.  That whole editing process is such a pain!!  I would have loved to just post the video in it's entirety, but I couldn't for two reasons.  Reason one:  The video is really long and really boring.  The whole transplant video is about 30 minutes.  And as you will see, the process isn't very exciting.  At least not as exciting as I thought it would be.  Amazing and mind boggling, yes.  Exciting, no.  Reason two:  I puke.  Multiple times.  I don't feel like anyone would want to see that, so I took it out.
 
I hope you at least try to watch it.  I know it's boring.  But just because it's boring doesn't mean it isn't worth it.  I'm pretty sure you will learn something from watching it.  At least that's my  hope.  That someone learns something.  Even if all you learn is that we (Jeremy and I) don't always know what we are talking about, at least you will have learned something!!  So, here it is.  The highly anticipated Stem-Cell  Transplant video.  Enjoy!
 
 
And I apologize to everyone for having to open the video in another window.  I am clueless and can't get the video to play in the post.  It's actually a tiny miracle that I ever even figured out how to upload it to You Tube and then post a link to it here.  So, take what you can get, even if it is just a link :).

Monday, October 13, 2014

The Magic Of Cancer (And The Beautiful Things We Have To Do) Part 1

 I have some video of the whole Stem Cell harvest/transplant process but until tonight I haven't had time to sit down and figure out how to edit it.  I've been wanting to share the video footage for awhile because I feel like everyone might learn more about the process from seeing it rather than reading about it (at least I seem to learn better that way).  I hope what you are seeing makes sense.  This part (part 1) is of the stem cell harvest process.  Luckily for me this only took two days (one for placement of my central line and one for the actual collection of cells). 
Watching all the videos brought back some stuff I had already forgotten, like how much hair I had!  Haha!  And, I didn't include everything.  The video of me talking all crazy while in recovery didn't make the cut.  I mean, it's funny, but NO.  And I cut out a lot of Jeremy's random video of the room.  Other than those few things what you see is exactly what went down.  Oh, and I apologize for the terrible transitions.  That part of the editing I haven't figured out yet.  Hopefully my editing skills will be up to standard when I edit Part 2.  So, without further adieu, I give you my stem cell harvest video...

Stem Cell Harvest Video
 
 
 

Friday, October 3, 2014

Perspective

Google defines "perspective" as "a particular attitude toward or way of regarding something; a point of view."  Let me tell you something.  Cancer changes your perspective.  On almost everything.

Before I knew I had cancer, I didn't think much about death.  And when I did think about it, it was as if death was something so far off in the future that I couldn't even really understand what it meant.  Now, now I think about death a lot.  And by a lot I mean probably every single day.  And now when I think about it, it's with the perspective of someone who has a disease that can kill you.  Death is certain and final and you come to really understand what that means when you are faced with the reality of it possibly happening sooner than later.  Totally not the same perspective as before cancer.

When your perspective on death changes, so does your perspective on life.  Before I knew I had cancer, I was living what I perceived as a wonderful, fulfilling life.  I had a wonderful husband, two wonderful children, a loving family, incredible friends, and a job that I enjoyed.  I was having fun, no doubt.  But, my new perspective is that I wasn't really living.  I was existing.  And I wonder, why was that? Why wasn't I really living?  The answer is simple:  Because I didn't realize that I was dying.  I didn't realize that with or without cancer, I was dying.  I didn't realize that every 24 hours, every new day, every sunrise I was alive to experience was a blessing because life is not something that is guaranteed.  We don't come with expiration dates.  None of us know when our final sunrise will come.  
So now, now I thank God daily for each day that I am allowed to live.  And I don't take a single moment for granted because I now understand that I will never experience today again.  I understand that really living isn't about getting up, going to work, making dinner, then going to bed and repeating every day.  What living is about is realizing that you may not be here tomorrow.  It is about making other people happy and expecting nothing in return.  It is about loving with your whole heart and not being afraid of not receiving that love in return.  It is about making sure your family knows how much you love them.  It is about not missing your children's activities, not a single one.  It is about laughing and crying with your friends.  It is about giving.  It is about putting off work to spend time with those who are the most important too you.  It is taking time to let those important people in your life know exactly how you feel because you know that tomorrow you may not get the opportunity to tell them.  Living is giving all the glory to God and placing each day in His hands.  
 Life is too short to be unhappy.   So I've decided to do what makes me happy even if others may not approve or understand.  I've decided that I don't want the people in my life to have to question how I feel or what I think.  

 So, thank you cancer for my new perspective.  


Sunday, September 21, 2014

I'm Surrounded By The Greatest People On Earth

Over the past several weeks I have been so humbled by the outpouring of support for my family.  As if everything that has been done for us during my journey to this point hasn't been enough, the support and help keeps coming.  It is such a humbling experience to be the recipient of so much, and I feel like saying "thank you" just isn't enough. 
 
A few weeks ago a great friend organized a tenderloin fundraiser.  Several people stepped up to help and it turned out to be a great success.  So many people have told me that they ordered a loin or that the loin was delicious.  I never really know what to say in response.  First of all, it's still weird to me that this is all happening.  Second of all, I didn't cook them!  So, I just say thank you.  And I feel like that isn't enough.
 
The loin crew




 
 
Today is eight weeks since my last chemo pre-transplant.  Eight weeks.  Two months.   I can't believe how much better I have felt this past week.  It seems like the fatigue is starting to get better every week.  My hair started growing back too.  I've been working full time with no issues.  I really can't complain! 
 
Today was also a second fundraiser for my family.  My sister-in-law planned and organized the whole thing.  And she did an amazing job.  My parents, brother, cousin, and my wonderful friend Courtney and her family helped so much.  It turned out to be a beautiful day and we had a great turnout!  As Cornhole tournaments go, it was very, very successful!
 
 
We had 18 teams!!
My girls working concessions

Thank you Jay, Courtney, and Melody!!
 
 
 
 
 
I really don't know what to say other than "thank you."  Thank you to everyone who helped with both of these fundraisers.  Thank you to everyone who participated by purchasing a loin or coming out to play cornhole.  Thank you to everyone who donated, whether it was monetary or otherwise.  I could never express how much all of this means to me.  Just knowing that when the bills start coming in we will be able to pay them is such a comfort.  And it's a comfort we wouldn't have without such a supportive community, family, and friends.  We are truly blessed!!
 
 
 
 
 
 


 
 

 
    
 
 
 


Tuesday, September 9, 2014

Strangers Aren't Always Bad

This past weekend I was blessed with being able to spend a little time with my stepsister Melodie.  Before she left to return home to Nashville, she handed me a gift from her and her husband Jon.  Also with the gift was a card from one of Melodie's friends, a woman whom I have never met.  She gave me this on Saturday evening, and I waited until this morning to open it.  Don't know why, I just did.  Maybe I waited because it needed to be the right moment for me to read it.  The last week or so I have not felt as good, and have been struggling a little mentally.  So, this card from a perfect stranger is evidently exactly what God knew I needed at exactly the right moment.  

This is the card



I'm not sure if you can read what this card says or not, but the second paragraph talks about how this woman was rooting around in her overgrown garden three weeks ago and came across a plaque.  She didn't sense the plaque was meant for her.  As she was driving in her car praying, she sensed the plaque was meant for me.

This is the plaque.

She proceeds to say that she then asked her daughter to pray, and if she felt lead too, then she should write a poem.  This was the poem...

Relapse
I thought I had conquered
That my battle ended there
I believed I was victorious
But the depths of my heart harbored fear

I lived my days in triumph
My song was free and light
Still the darkness quivered
In the edges of my sight

And then, at once, it all collapsed
It brought me to my knees
I had hoped and prayed
This shouldn't pass
Now my cries of despair shook the trees

"For what?" I choked
Under a sky tauntingly blue
"To what end?" I pleaded
With knees soaked in dew

Not expecting an answer
Wanting only to mourn
For my story cut short
For possibilities shorn

I felt my battered soul return
To a searing place of numb despair
Where spiny cells imprisoned joy
Where cancer held me scared

I had fought and won the battles
I had clawed and scratched through hell
But this micro bio terror
Might still toll my final bell

In the suffocating blackness
In my consuming misery
A voice resounded, clear and low,
"It's time.  Abide in me."

I couldn't breathe to speak
No sound escaped my lips
But I felt my body answer
As my Creator took me in His grip

He gently disentangled me
From the anguish that enveloped
And though its aftermath remained
Something else developed

I felt a warmth, a confidence,
But, more than that, I knew
That God would help me persevere
If His will I would pursue

So, though I don't know how it ends
Or how my life's played out
The breaths I breathe, few or many
come from Judah's Lion's mouth

I know.  I cried too.
It's amazing how God works.  Two women I have never met provided me with a gift that has forever touched my heart.  God knew I needed these strangers to help get me thru and overcome the bad days.  And the poem.  The poem couldn't be more accurate if I had written it myself.  It presents my thoughts and feelings through all of this, as if I had told her in my own words.  

I don't know if these ladies read this blog or not, but if they do...THANK YOU WONDERFUL STRANGERS!!!!  YOU HAVE MADE A DIFFERENCE!!

 

Tuesday, August 26, 2014

I Can See The Top Of The Mountain


Gosh.  I have so much to say today!!  It has been just shy of a month since I received my transplant, and I have been home a little over two weeks now, and things are still progressing!  I am still feeling good.  I have been getting out more, doing more things around the house.  I even cooked dinner the last two nights (I did burn the potatoes, but that's not the point).  The biggest issues I have are with fatigue and that darn nausea.  The phenergan takes care of the nausea, but makes me tired so I have been trying to avoid taking that.  I've been eating more, and food tastes about 90% normal.  The fatigue is there basically all the time.  I have found that forcing myself to get up of the couch and do things helps a lot. 
 
I had an appointment with Dr. Stephens today.  All my levels are in normal range!!!!  ALL OF THEM!!!  White count is still rising, hemoglobin and platelets are normal.  I can't explain how happy it made me to hear that news.  When I sit back and think about everything that my body has been through over the last nine months, I'm so grateful that I have been recovering so quickly after such an aggressive treatment.  Dr. Stephens told me that I am doing "phenomenal" and progressing faster than most.  Considering that just three weeks ago I honestly felt like I was dying (or at least thought that what I was feeling was what it probably felt like to die), this is music to my ears!!! 
 
Dr. Stephens examined me, feeling around on my neck and underarms.  He didn't feel anything weird or abnormal for once.  There is one spot on my neck that we can't tell if it's scar tissue from the biopsy surgery or if it is still a swollen lymph node.  However, he finds it hard to believe that it could still be a lymph node after just having such high doses of chemo.  But, we won't know for sure until my next PET scan, which was scheduled for November 7.  I also had my port flushed today.  We discovered that my port is not flipped as the nurses at IU thought, so that's good.  We are going to leave the port in until after my next scan, just in case.  And, unless I have an issue, I don't have to see Dr. Stephens again until November!! 
This was hanging in Dr. Stephens office today. 
 I've been thinking a lot lately about all of this and just cancer in general.  All of my thoughts come to this:  Cancer is some scary, scary stuff.  Cancer can kill you.  When I was first told I had cancer, it didn't really sink in...I didn't really process what that meant.  Initially, I just went through the motions.  The severity of it all never really sunk in until May when my scan didn't come back clear after having just completed six months and twelve treatments of chemo.  That's when I realized how serious this cancer stuff was.  I mean, after all, I have the "good cancer," and if I have that and the chemo didn't get rid of it what was going to happen to me?  And now, after having completed the stem cell transplant and enduring all that it has to offer, I'm thankful and scared at the same time. Thankful that the treatment exists, that the research and science was there when I needed it.  Scared that it didn't work.  I will be scared probably for the rest of my life, even if it did work. 
 
One thing that helps me stay focused and positive even on the hardest days is my family.  Especially my children.  While I was in Indy, my mom had them make me a memory jar.  The jar contains memories that they have of me, and they created them all on their own.  They gave it to me when I got home, and let me be honest.  I cried like a baby!  I have never received such a meaningful gift.  So when I am having a bad day, I get the memories out of that jar and read them again.  And every time my heart just fills with joy.  I never knew how much of an impact I had on my girls.  I definitely didn't know what activities or things that we have done have meant the most.  But now I do.  And I will do everything I can to make sure they have more memories for that jar. 
Emily made this for the front of the jar.  Words she came up with on her own :)




 
 
 


 
 


Friday, August 15, 2014

Maybe I Really Do Have Superhero Powers...

 
OK.  I just read my last post, and I had to chuckle.  I explained how it would be a few weeks before my white count was in normal range, and how recovery was going to be a long process.  I didn't just make this stuff up.  This is what I was told by every nurse and every doctor I encountered during my transplant.  I was told that upon release I would need to have labs done twice a week, and as my numbers climbed that would be lowered to once per week until eventually I wouldn't have to do it anymore.  I was told recovery would take 2-3 months, and that it would take a number of weeks for the side effects of the chemo to subside.  My first follow-up appointment with Dr. Stephens was scheduled for this past Monday. 
 
So, Monday we went to see Dr. Stephens.  I wore my mask as instructed.  I was told I would need to wear that awful thing anytime I was out in public for about two weeks or so, until my white count went up a bit.  Honestly, I expected my labs to be better, but nothing significant.  After all, it was just Friday that my white count was 1.7 and had been going up about .4 every day prior.  Before the transplant my white count was 10.  Normal range is 4-10.  So, I was expecting a 2.5 result.  Uh.  I was off.  Way off.  Dr. Stephens left the room to go check on my labs.  He comes back in sometime later and says, "Give me that mask."  So I did.  And he threw it in the trash.  He had a huge smile on his face and was kind of at a loss for words.  He looked at us and told us that the reason he was gone so long was because he had the lady in the lab run my results twice, because he couldn't believe what he saw.  When the second run said the same thing as the first, he was shocked.  My white count was 6.0!!!!!  Already in normal range!!  All my other counts were either normal or very close to normal!!  Dr. Stephens told me I didn't need to come back for two weeks.  He told me that given my counts were so good, I should notice a big change in how I was feeling by this weekend, and said my appetite should be back and that I should also expect to be able to taste food normally again within a week.  He said he expected me to still experience fatigue, and to expect periods of energy bursts followed by fatigue.  OK!!  I'll take it!
 
Fast forward to today.  One week at home, four days since I saw Dr. Stephens.  What a difference a week makes!!  Last week I was hallucinating and wondered if how I was feeling was what dying felt like.  Today, I honestly feel really good.  The chemo side effects (mucousitis) are subsiding.  I haven't taken phenegren in two days.  Wednesday I was able to eat lunch for the first time in three weeks.  I actually want to talk to people.  I'm sleeping great at night.  I've been able to get up with the girls and get them ready for school everyday.   I've done dishes the last two nights, and some laundry.  Progress, progress, progress!!!!!   Jeremy told me that he can tell a difference in my skin color, and he says I seem to have more energy than before the transplant.  We are kind of in shock over all this progress.  We were prepared for months of downtime for me. 
 
I really think that I may be back to work part-time within three more weeks.  Seems crazy, and maybe it is, but if I keep getting better at this pace it will happen.  And I couldn't be happier about this progress!!  I told Reagan that they had to collect my cells so they could put Superhero powers in them before they gave them back to me.  Little did I know when I said that that it might just be true!!
 
 
 


Saturday, August 9, 2014

Stem Cell Transplant Day 19: I'm Home!!!!!!!!!!!!

 
I'm home!  I was discharged from the hospital yesterday about noon!!  Was I shocked when the Dr. told me Thursday afternoon that I could go home Friday?  Heck yes I was!!  When I asked when he was going to let me go home, I honestly expected him to say Monday.  So, when he said "tomorrow" I was shocked.  My sister-in-law was sitting with me when he told me, and I think she may have been even more excited than I was!!  I am so glad to be home.  Eighteen days in the hospital is a long, long time. 
  
I feel that I need to enlighten everyone on what happened during my last few days in the hospital.  It was not smooth sailing.  Not even close.  Last Saturday our good friends came up to visit, and when they were there, I was good.  But later in the evening, things went south pretty fast.  Saturday was day +5 (meaning five days post transplant), and 11 days after starting six strait days of high dose chemotherapy, so the crappiness that ensued was to be expected.  That evening I started getting sick, and so did the beginning of extreme abdominal pain.  Sunday was more of the same, only worse.  The mucousitis caused by the chemo was the culprit for all of this sickness and pain.  
Seriously.  This was my television.  And it didn't work half the time. 
 
I can't remember if it was Saturday evening or Sunday morning when they started the pain medication.  In any event, they were giving me dilaudid every four hours and it was helping.  Eventually I was needing it every three hours, so the decision was made to give me a pain pump so I could control the medication.  This was the beginning of craziness that I never, ever, ever, ever, ever want to experience again.  I will spare the details of the dosage amounts, but I am certain I was receiving way more than I should have been.  Then, at some point Monday or Tuesday the decision was made to switch to Fentanyl and to also give me Ativan.  Now, this was a problem for me because I had adamantly requested to not have Ativan.  I don't like the way it makes me feel and I just didn't want to deal with that.  But, the nurse insisted that it would help, and that she would give me half a normal dose and that if it didn't work to my liking I wouldn't have to do it again.  So, I caved.  Boy oh boy do I regret that decision.

What started happening was so scary.  I started hallucinating.  I was talking to people who weren't there.  I was seeing people who weren't there.  I was sending Jeremy strange text messages about our "new friends".  He tells me that at one point I told him to get the nurse and that she was in my bathroom.  He told me she wasn't, and even opened the door to prove it to me, but I insisted I saw here walk in there.  I would close my eyes for a few minutes and then sit up and start making incoherent statements.  I couldn't sleep at all Tuesday night because of the vivid images I was seeing and experiencing when I closed my eyes.  I was terrified.  Wednesday I told them to take me off all the pain meds.  They did and gradually things improved.  Wednesday night I was still seeing vivid images, but not as often.  Thursday was much better.  It was an awful, terrifying experience.  Jeremy tells me after seeing how I reacted that I would never make a good heroin addict.  At least I know that in advance.
 
They determine when to discharge based on a lot of factors, but the main factor is your blood counts, specifically focusing on the white count.  Mine had been gradually going up for a few days after completely bottoming out, exactly as it was supposed too.  My neutrophil count was a few hundred lower than they wanted it to be, but the doctor decided to let me come home anyway.  Thank goodness!! 
Me with my blood board.  Most exciting thing that happened every day was
seeing what numbers would be written on this board!
So, now I just have to be super careful to not get sick.  It will still be a few weeks before my white count is in a good range, so until then there will be lots and lots of handwashing taking place around here.  How do I feel?  Very, very fatigued.  I still have no appetite and food and drinks taste gross.  I still have digestive issues.  I have to be very careful to not get dehydrated, but this is proving tricky since I don't want to drink anything because it tastes so awful.  However, last night is the first solid food I have eaten in almost two weeks.  I didn't eat a lot but I did eat so that was a plus.  I had a shake this morning, couldn't do lunch, but did eat a little dinner tonight.  Every day is going to be a little bit better than the day before.  Hopefully soon I can eat and drink normal.  Until then I will just do what I can, sleep when I need too.  I will do my best to keep you all posted.   
 
Oh.  One more thing.  Just so you know, when they remove your central line, they don't numb it or anything.  They just pull it out.  Yikes!
 
Bald again.  This time, I don't care.  It started coming out in clumps and was everywhere. 
When I woke up and there was  hair all over my pillow, in piles, I was done.  The tech
shaved my head that morning.  It's just hair.  I know first hand it will grow back. 


Sunday, August 3, 2014

Stem Cell Transplant Day 13

Or day +6 as they call it in here


I have been here 13 days so far.  I'm six days out from the transplant.  I really don't know what to say about what this has been like, other than awful.  I told Jeremy the other night that I sure am glad I got the "good cancer."  Can not even imagine what having the "bad cancer" is like.  I've learned that just because a cancer is curable doesn't mean the road to a cure is easy.  At all.  This is by far the hardest thing I have ever done, both physically and mentally. 

As the days go on, the worse I feel.  The more nausea and vomiting I have.  The more stomach cramps that don't ever stop.  The mucositis (yeah, it's terrible) gets worse.  Last night I just couldn't deal anymore so I finally got some dilaudid.  Hallelujah for pain meds!!  It knocks the throat and stomach pain out completely, making this a little more tolerable.  I sleep a lot.  I have never been this fatigued in my life.  It's crazy how just walking to the bathroom leaves me weak.  This will improve as my counts go up, but geez.  My appetite is pretty much non-existent.  I still drink my shake in the morning but that's about all I can manage to get down.  This morning I got sick after I drank it and the nurse said that chemo can cause lactose intolerance so I should probably stop the shake.  They don't have almond or soy milk here so I guess I will have to not drink it.  Jeremy went to the grocery store and bought me some peaches.  Hopefully those work.    

My white count has completely bottomed out, just as it is supposed too.  Today, my hemoglobin is 9.6 and my platelets are 24.  The doctor says he expects that if I will need a blood transfusion that will happen tomorrow or Tuesday as my counts continue to drop.  He told me that the misery that I feel is normal misery and is to be expected.  He said it's good that I feel as bad as I do because that means the chemo is doing its job. 

And my hair.  Today it has decided to fall out.  I already talked to the nurse about shaving it later.  It's coming out in handfuls so I might as well get rid of it.  The first time my hair fell out, I was really freaked out and emotional.  This time I really don't care.  It is what it is.  And I know it will grow back. 

One reason it has taken me so long to update this blog is because I have nothing positive to say.  But, I have been getting a lot of messages asking how its going so I figured I would just put it on here.  Hopefully in the next two to three days things will start getting better.  At least that's what they tell me. 

 


Monday, July 28, 2014

Stem Cell Day!!!!

 
Or Day 0 as they call it in here.
 
I got my cells back this morning!!!  Such an important day for me!!  Many call it a Re-Birthday.  If this works (and I'm confident it will) that's what I will call it too.  July 28th, 2014...my Re-Birthday.  Fingers are crossed that I celebrate two birthdays a year!
 
The process of putting the cells in is not very dramatic at all.  Collecting the cells is way more of a process.  Jeremy took video, and I really want to show it, but it shows me getting sick and I don't want everyone to see that.  So, if we can figure out how to edit some of it out then I will post it later.  Until then, my recollection of events will have to suffice.  They started at 10:04am and were finished exactly 30 minutes later.  I had two bags (They told me that most people have one.  Guess I'm a stem cell overachiever).  They thawed them out in my room.  They pulled them out of a freezer that had smoke coming out of it, so that was pretty cool.  It took about a minute to thaw the bags out, and they crackled as they were thawing.  Then they hook it up to my central line tubing.  They suck the cells into a big syringe, then slowly push the cells in.  When the syringe was empty, they sucked up some more.  It was definitely not how I expected it to happen. 
 
I instantly felt weird right after she pushed the first cells into the line.  I wish I could explain the feeling.  All I know to say is that I felt tingly and just weird.  And I immediately could taste the preservative that they put in the cells before they freeze them.  It was disgusting.  Tasted like a mixture of tomato soup and creamed corn.  They gave me mints to deal with that nasty taste.  I did OK until about halfway through.  Then I knew it was just a matter of minutes before I would get sick.  And I did.  It was pretty bad  They knew it would happen because it always does.  They said it is because of the preservative.  Oh, and the preservative takes a few days to get out of my system.  So that taste I tasted??  Well, I smell like that too.  I can't smell it, but everyone else can.  Jeremy said he is going to start calling me Campbell's (yeah, he has jokes). 
 
After it was all over, I slept for a good while.  As the day has gone one I have felt a lot better.  But, I am afraid it is a false sense of feeling good.  They tell me as my counts continue to drop I will start feeling bad again.  I'm taking advantage of this afternoon though.  I ate.  I haven't eaten since Wednesday.  I have had a shake every morning, and that's it with the exception of the bacon sandwich yesterday.  The metallic taste is back (happened last time I had chemo) and I'm seriously craving chips and salsa.  Hacienda chips and salsa to be exact.  My nurse is going to the grocery store tonight and bringing me back some chips and salsa since she knows I want some.  All the nurses are awesome.  Couldn't ask for better care that is for sure.  Anyway, I ate a pudding cup and some cheese crackers.  Then I had some sunflower seeds.  Then I ordered some French fries with a bunch of ketchup and a salad with a bunch of French dressing (the tomato thing I guess).  I ate all the fries, some of the salad.  I've lost nine pounds since I have been here so I suppose it is time to start trying to put some of that weight back on.
 
My vision is getting pretty blurry, but they say that is a side effect of chemo.  As I type this the words are pretty much not readable.  So I apologize for errors.  I broke out in a pretty crazy itchy rash that went away today.  They think it is the Cipro.  Didn't have it today at all, but they are giving it to me tonight again.  Guess we will see if that's the culprit. 
 
I'm just waiting to be unhooked from my pole so I can take a shower then go to sleep.  I'm still pretty tired but making myself get up and walk.  The tech told me today that the people with positive attitudes and get up and move around the most get out of here sometimes weeks before the others.  And since I want to get out of here, I'm not going to let a little puking and tiredness keep me down.  I really, really, really, really, really, really want to go home!!!!! 
 


Sunday, July 27, 2014

Stem Cell Transplant Day 6

 
I have been here six days now, but it feels like six weeks.  I can't say that I like being here at all.  I already miss everything.  I've been doing ok I suppose.  Tired.  Nausea.  No appetite.  On the bright side, today I completed my 14th chemo treatment in six days.  So chemo is now officially over.  The side effects haven't fully kicked in just yet, but I'm hoping this is as bad as it gets.  I haven't eaten much except drinking a shake for breakfast for the last three days.  This afternoon I did manage to get down a bacon sandwich though.  I'm just not hungry, and that is really odd for me.  I love to eat! 
 
Tomorrow I get my stem cells back.  I'm excited and a little nervous about this.  They tell me that tomorrow I will probably be wiped out all day.  Then after that it will be day to day on how I will feel, because everyone reacts different so they can't tell me how I will do. 
 
That's all I have for now.  Hopefully in the next couple of days I will have more energy to update this blog.  In the mean time, we will just sit here and watch my blood counts and hope they do what they are supposed too.  And fast.  I really want to go home! 

Wednesday, July 23, 2014

Stem Cell Transplant Day 2



Remember last night for dinner I ordered a cheeseburger and fries, right?  And I didn't think they could screw that up?  Well, I wouldn't say they screwed it up as much as they just didn't bring it too me for TWO HOURS.  That's right.  Ordered at 6, received it a little after 8.  Everything was cold.  Couldn't get the bun off the burger because it was literally stuck to the meat.  I ate most of it anyway.  At this point who cares.  Food is food whether it's good or not!  So, this morning for breakfast I made a coffee Vi-Shake.  Delicious.  I have two nurses wanting samples now.  It's that good.  Anyway, about that time the "Classic Cuisine" room service dude walks in to get my breakfast order.  I tell him I already had a shake and that I might just starve to death waiting on him to bring me breakfast, and that even if he did it wouldn't be edible.  He was like, "Huh?"  I said listen, here is what is up with my food lately, and I told him what had happened.  He smiled at me then said, "Well, because I like you I will personally make sure your breakfast is brought to you quickly and that it is warm and edible.  But just for you."  Then he winks and smiles.  I told him he was on the clock and the timer started now.  He smiled and out the door he went.  Twenty minutes later as I'm walking the halls here comes my food guy, carrying my breakfast.  And it was warm and edible as promised! I was happy about that!
 
Last nights chemo was awful.  Just awful.  I have honestly never felt that way ever before.  This particular drug causes immediate side effects such as headache, jaw pain, and other things such as restless leg and I unfortunately suffered from all three pretty quickly.  The headache was what I would call a migraine, temples pounding.  The jaw pain felt like I couldn't open my mouth if I wanted too.  My ankles would not. stop. moving.  At all.  Nothing I could do about it.  They gave me morphine right away.  I had never had morphine before and really didn't want any but that's what the doctor had ordered so that's what I got.  I did learn something though.  I learned that I will never let anyone give me morphine ever again.  It made everything 50 times worse.  I honestly believed my head was going to explode.  I almost passed out and threw up on my way back from the bathroom.  I really thought I was going to hit the floor.  They put my bed alarm on after that.  Just in case.  Finally at 2:30 this morning they gave me Dilaudid and that did the trick.  Thank God!  I told Jeremy I wasn't sure I could do that much longer.  It was the most awful thing ever. 
The pills I have to take everyday before chemo on the left. 
The picture on the right is of the chemo that made me
feel so incredibly awful last night.  Notice it is covered
in a red bag.  That should have been a clue.  The second clue should
be when the nurse puts on a face mask, gloves, and two cover jackets so that
she can still have kids one day.  That's exactly why she told me they do it.  Just
touching this stuff evidently messes you up.  So there's that.
This morning at 10am I started chemo.  Two different drugs today, one of them I receive twice.  My last treatment for the night will begin at 11pm.  Strange time I think but they said they have to be 12 hours apart.  I have felt pretty good today, just a little tired.  I have walked the halls several times today.  It gets boring being in this room all day! 

My meals were much better today.  As you read above breakfast was timely.  Jeremy brought me some bagel bites for lunch.  And, at the advice of my nurse, I pre-ordered my dinner and told them I wanted it at 6.  It arrived at 5:45 and was actually pretty good.  At least that is improving!!

Tomorrow hopefully I will get into a permanent room.  This one isn't so bad, but it doesn't have a shower!!  They tell me they have someone being discharged tomorrow, so after that room is cleaned I can move in to that one.  Something to look forward too.  Otherwise, tomorrow should be a repeat of today.  Three chemo treatments, lots of pills, and hopefully good food.  Three chemo treatments down, eleven to go!
 
My toilet.  Has to be covered with this blue blanket
so that when my nurses flush it they don't get
my toxins.  That's so comforting.