Blog Entries

Kailey’s Corner

I read every message in my guestbook.  You can tell when I’ve read your message because I always click the little Caring Bridge button at the bottom.  The below note comes directly out of my guestbook. It is from my sister Michelle and is about something that happened in my niece Kailey’s classroom.  If you’re someplace you don’t want to cry, then read Kailey’s Corner a bit later. I’ve got some powerful kindergartners on my side!

Guestbook Entry by Michelle

Rob,

Below is an email I received from Kailey’s kindergarten teacher, Sarah, earlier today. I had it on my list to email the kids’ teachers to let them know what was going on in case either of them mentioned it at school.  Before I had the chance, this took place, in a public school, no less.  I couldn’t have imagined Kailey’s teacher managing what happened any better. I was amazed when I read this and I think you will be too.  Kailey, of course, is girl 1 🙂
Kailey told the class about her uncle. Here’s the email I sent to our staff’s prayer group. Our prayers are with you. 
Sarah

Moved to tears today when this happened in my class:
Girl 1:”My uncle is really sick and they’re going to get the sick out of him so he is going to lose all his hair from his head, legs, armpits, and everywhere. So please pray for him that he’s ok.”
 
Girl 2:”Let’s pray right now! Can we, Miss Brown?”
 
Me: “You sure can.” (Thinking it would be in her head or privately. Though I work in a public school, I will never tell a child s/he can NOT pray.)
 
Girl 2 closes her eyes and bows her head, the rest of the class gets silent without anyone saying anything to prompt them: “Dear Jesus, Thank you for this great day. And please watch over K’s uncle and keep him safe.”
 
Girl 3: “Dear God, Thank you for everything. Please help her uncle get better. Amen.”
 
Girl 1: “Dear Lord, Thank you for all the great things. Please take care of my uncle and make him safe. Please don’t let him die. Amen.”
 
And then they seamlessly moved back to their independent work. So moved by the Holy Spirit. 
 
Now that is God at work!

This Space Intentionally Left Blank

Daddy’s Nose Bleed

Yesterday  I wrote about my nose bleed.  While my nose was bleeding, Lindsey called me via Facetime (for those that don’t know, facetime is an app on the iPhone that allows you to video chat).  As I talked to Sydney and Natalie, I held a wash cloth over my nose to catch the blood.  The girls still aren’t quite used to talking to daddy over the iphone, so it was a short conversation.  Here’s the cute part…after the call was over Sydney walked around the house with her hand over her nose to look like her daddy. Click here to see a picture.
The 3 C’s: Cancer, Chemotherapy and Kicking ALL’s ASS
Some one pointed out to me that I use a lot of C words in my posts.  I imagine part of that is because Cancer, Chemotherapy, and Kicking ALL’s ASS almost all begin with the letter C.  So in honor of the letter C, I offer the following…
Chop-Chop cancer cure, come more quickly. Can’t you C I court your company?  Chemotherapy comforts me crudely.  A cure could comfort completely.  Couldn’t a cure come for Christmas?  If not, I’ll still kick ALL’s ASS.
And the Powerball is:
For you number kind of people, I thought I’d provide some info on my blood counts.  Hopefully you can make more sense of them than I usually do:
WBC: Today 2.4, yesterday 2.5, Saturday 2.3
Hemoglobin: Today 9.1, yesterday 9.9, Saturday 10.3
Platelets: Today 27, yesterday 13, Saturday 15 (I received a transfusion, which is why today’s number is much higher)
If my Hemoglobin gets around 7, then I get a transfusion.  If my platelets get around 10, then I get a transfusion.
An Unfortunate Rainbow
Lindsey visited the gift shop for me today.  I needed a highlighter for my bible.  While she was in the cancer center gift shop, she noticed all the different colored bracelets for different types of cancers. Each bracelet a different color.  Each color representing a type of cancer.  Each type of cancer is a killer that needs to be stopped.  I need to learn which colors go with which cancers.  I’ll probably never look at a rainbow the same way again.
Headline News
So what really happened today?  The answer is not much.  I received my 4th and 5th bag of chemo today. Lindsey and I got to hang out and listen to the Chemo playlist she put together.  It’s made up of a few songs we like and a few songs that have become important since my diagnosis.  I’ve been able to facetime with the kids some today, which has been good.  I stare at their pictures often and can’t wait to see them again.  I got my PICC line dressing changed today. I tried to watch, but I was told I couldn’t breathe on it, so I just turned my head.  Kinda odd to see a little tube just sticking out of your skin anyway.  I stayed regular and ate pretty well.  A pastor from our church stopped by to pray with us.  I also got to see an old friend who I used to work with and has many ties to the cancer center.  All in all a good day.
Freedom!
One other minor victory occurred today.  I am no longer on IV fluids.   This means I am no longer tied to a pole 24/7.  I kinda got used to toting the thing around.  It just became habit.  Anyone want to take bets on if I will forget I’m no longer hooked up to it and automatically take it with me to the bathroom tonight?  Maybe I’ll do it anyway, just for company.  I kinda miss my pole friend already.
Broken Scale
They took my weight today, but darn it if the scale wasn’t broken.  The scale showed that I’ve gained 0.8 kilos since I came here on Friday.  Hopefully they get a scale that works, since an accurate weight is very important.  Guess I’ll stop ordering the apple pie and ice cream for every dessert.
A Duck Dynasty Prayer
Father, thank you for today.  I’ve taken another step on this journey and today it hit me just how long of a journey this will be.  Five years until I am cured.  2.5 years of treatments.  While I feel good today, I can’t stop now.  That would be like celebrating my first few steps as a sign of victory in a marathon.  There are many more steps to go, a number too big for me to conceive.  There is no guarantee that I will finish this race, but I have faith that you will see me through it.  Please let me take each step one at a time and speak to me throughout each motion.  Thank you for another day.  Amen.

A Mid Monday Message

The Power of Praying for Poop

Once again, your prayers have proved effective.  We’ll just say I’ve returned to my “regular” programming.  I think it is safe to stop the post “#2” prayers, as we don’t want to swing too far in the other direction.
From Home to the Hospital: One Man’s Journey
Some have asked how I knew to go to the doctor.  At least one person instructed me to tell it in a funny way.  It’s pretty straight forward and I’m not sure it’s funny, but we’ll see what comes out.
I’ve had the same Primary Care Provider (PCP) since 2003.  This past summer, she left the practice, which left me without a doc.  Lindsey really liked a PCP she had seen previously, so I made a mental note to make an appointment with him.  That mental note stayed tucked away for a few months until Open Enrollment rolled around.  I had to pick a PCP, so I put down Dr. Jeffrey Kons, the one who Lindsey had seen 2 years ago.  Now I had 2 mental notes…1) I needed to make an appointment with him 2) I needed to do it before the end of the year, because starting next year the health plan I chose required me to pay full costs of visits unless it was an annual exam.  I rarely had need to see a doctor, so mental notes 1 and 2 sat a bit longer.
Finally, on somewhat of a whim, I called his office on November 26th to set up an appointment.  My appointment was scheduled and I didn’t give it much thought.  I figured we’d talk about the meds I was taking, get to know eachother a bit, and then I wouldn’t see him for a year or two.
On the night of November 28th, I had an odd sensation under my right rib cage. It wasn’t painful, but it felt like a hand was tucked just under my skin.  Not knowing my anatomy, I asked my good friend Dr. Google what lied beneath my right rib cage and found out it was my liver.  I have a bad habit of leaning into my desk at times.  When I do this, it pushes in the same spot as my liver, so I just figured I wasn’t paying attention that day and leaned into my desk a bit too much.
The next day I could still tell my liver wasn’t happy, but now I also felt a bit queasy.  Still figuring it was nothing big, I paid special attention not to put any pressure on my right side and just be careful of what I did.  That night, a curious thing happened.  I turned into a menopausal woman.  I began getting hot randomly and woke up with my belly covered in sweat.  The rest of me was not sweaty, but my blanket was soaked at my belly.  That silly liver of mine was really not happy with me!
I had a low grade fever of 99.4, and didn’t think too much about it.  I went to work, ate normal, was careful of my liver, and overall felt good.  Over the weekend, I began having pain in my side as well.  The night sweats weren’t severe, but I was definitely more sweaty than normal.  I consulted my good friend Dr. Google again, and while leukemia came up in the search, I didn’t think I had many of the symptoms, because aside from some discomfort and sweating, I felt perfectly fine. Dr. Google thought I might have Gallbladder issues, a kidney stone or diabetes.  Knowing my lifestyle, I was leaning towards diabetes so I was preparing myself for a bit of a lifestyle change.
Monday was a normal day overall, but that night my temp was 100.4.  Tuesday seemed a bit worse, and I was glad I had my appointment that afternoon.  Dr. Kons and I chit chatted about Cerner (Cerner is the computer system I support at the hospital and it is the same one he uses for his practice) and I told him about my symptoms.  He had a urine dip done, which showed blood in my urine, so he thought I might have a kidney stone (as originally diagnosed by my good friend Dr. Google).  He ordered a CBC with Diff and a CMP, just to be sure those came back normal.  If they did, I would have a CT per the kidney stone protocol so we could figure out next steps.  He would call me in the morning.
Wednesday morning came and went without a call.  Then in the mid afternoon Dr. Kons called with my results.  He was very professional and to the point, “We have some things we need to get on top of and get checked out right away.  Your liver enzymes are up, which is concerning, but more concerning is your blood results.  You have blasts in your blood, which is a type of cell that shouldn’t be there.  I want to move quickly on this, so my nurse will be calling you soon.  I need to get you in for a CAT scan today.  My nurse will call you shortly.”  There I sat, not quite sure what just happened to my kidney stone diagnosis and Dr. Google’s sage advice about stones and diabetes.  Dr. Google advised me on what exactly “blasts” were, and they weren’t a good thing.  I had them in my blood and Dr. Google said there shouldn’t be any.
My CT was scheduled quickly, and I had to leave work immediately to make the appointment.  My CT was done at Uni (with apologies to marketing,because I guess it is actually called “Indiana University Health University Hospital”) and to keep a long story short I had some labs drawn outside of the hospital as well  (thank you Linda).  At that point I just knew I had leukemia, even if Dr. Kons couldn’t say it.  So now how do I tell Lindsey without her getting too worried until I know for sure…
We had a normal night and put the kids to bed.  I struggled to find the right moment, and as Lindsey will tell it I was very calm and non chalant.  She was in the dining room, I was laying on the couch.
R: “Dr. Kons called today with my results, I had to get a CT”,
L: “What did he say, is it not a kidney stone?”,
R: “Well my liver enzymes are high and my blood work is abnormal, so he wanted to get a CT”,
L: “Did he say what he thinks it could be?”,
R: “He wants to rule out Leukemia and Lymphoma”
L: “Did he say that, or is that what you found on Google (she knows me too well)”,
R: “He said it”,
L: “Are you worried?”
R: “Not really.  If it’s leukemia, it’s very treatable and we’ll get through it.”
As Lindsey would tell it, at this point she was a little worried, but since I made it sound so benign, she was ok.  Mission accomplished.
With my knowlege that I was most likely spending my last night at home for awhile, I picked up each of my kids as they slept and say goodbye.  I told the girls that daddy will be there to walk them down the aisle and I told Tucker that I’d be there with him to play catch and see him grow into a man.  I laid each one of them down and enjoyed just watching them sleep.
The next morning I went to work as normal and waited for Dr. Kons to call.  A few people knew I thought I had a kidney stone, but I didn’t tell anyone about the additional possibilities.  At around 9:30am I recieved a call from Dr. Kons nurse that he wanted to be proactive and admit me.  She would be in touch with me as soon as a bed was ready at Methodist, which may be 30 minutes or a couple of hours.  Dr. Kons was waiting on one final result, but the CT showed an enlarged spleen and he wanted to be ready to get a bone marrow sample right away.  I went and told my boss Annette a quick synopsis of the situation, and as always, she was very supportive.  She let me go home to prepare and to be with Lindsey.  On the way home I called Lindsey to tell her the full results.  I had her at bone marrow aspiration.  With those words she knew.
I arrived home and hugged Lindsey.  She was finishing up a few things that she had started, and I began to pack a bag.  We waited until the phone call eventually came.  A bed was ready for me at Methodist hospital and my fight with leukemia was about to begin.  We arrived at Methodist, settled into my room, and met my original hematologist.  She did the bone marrow aspiration the afternoon of December 5th and I began my Caring Bridge site that very night that very night.
From Home to the Hospital: An Epilogue
I should take a moment to point out that Lindsey was supposed to be working the day I was admitted.  She was called off due to low patient volume, so she was unexpectedly at home for the day.  Also, since she was supposed to be working, the kids were with our sitter.  Although getting admitted was in no one’s plan for the day, God did it in the exact way that allowed for Lindsey to be off work so we could go to the hospital together with the kids already safely taken care of at the sitter. Thank you God.