Hilltop Girl

Originally wrote: July 2007
by Jesse Richardson
Inspired by someone I once knew: 

Hilltop Girl

Locals knew her as Hilltop girl, I knew her as a friend.

Quiet, sweet, shy, and strong.

So many things I wanted to tell her, too afraid.

I missed her since her departure to the hills, never to be seen again.

I strolled along the road hoping to see her behind her window.

Her blonde hair soft as cotton, precious as gold, free as a butterfly.

Memories of a weekend I won't forget, memories fallen away.

A smile so bright, to shine a city.

Kindness that warms a room with happiness.

I stopped to glance at the hilltop, a fortress of wonder.
Loneliness we shared, she never knew.

Wonder if she was ever told that she was special?

A piece of her was lost, lost into the clouds to never return.

A sister to never be seen, heard, or spoken to again.

A friend she needed.

Surrounded by trees, surrounded by an illness.

As I looked at her home, I wondered about her.

Wish I could have told her things were going to be fine, I'm here.

Wish I could have stepped back a bit, let her come to me.
Being too nice is a downfall.

Looking at the hilltop, she wasn't coming to me.

Teardrop of salt hit the ground.
Just a wish I had wished for.

To see her again, to make things right, to make them better.

Niceness can be a deadly weapon, to make others drift away.

Drift away as Hilltop girl has done.

As I walked around, mist from the clouds spoke.

I could hear her voice without being spoken to.

Never to be seen, never spoken to.
I wished. . . one last time.

To hug her, to say hi, to never say goodbye.

To do it all over again, I would change a few things.

Birds flew past her window as if to signal I was there.
A smile I saw through the window.
A gleam, a glow, a face.
A precious face I saw.

With a tear drop on my pillow, I woke up.
A dream.

That was all.
A hope.
That was all.

To see her again, a dream I had hoped for.

She was somebody that I us to know.

2 Years In Remission: Stage 4 Non Hodgkin's Lymphoma

April 2011: 31 Years Old- After 3rd Chemotherapy Treatment

2 Years: Submission To Remission, Cancer Taps Out

Telling my transplant team, cancer team , the CF Team, and my lung transplant support group at the University Of Michigan Medical Center (UofM) the following after 6 months of intense RCHOP (Rituxan, Cyclophosphamide, Hydroxydaunorubicin, Oncovin, and Prednisone) Chemotherapy treatment.


"Cystic Fibrosis (CF) is 100 times worse than having stage 4 cancer large B-Cell Non Hodgkin's Lymphoma, at least for me and my personal experience.  I'd take having cancer any day over having CF in my lungs again.  With cancer, there are medications to help, people can beat cancer.  With CF, it's a progressive disease from the day you're born. There are no IV drugs to 'cure' CF or stop it.  With cancer, you feel like crap one day, and are leaping out of bed feeling awesome the next, or the next few after your chemotherapy (chemo) course is done and over with.  With CF, you feel like crap one day, feel like you're dieing the next, and are actually dead the next.  If you can't breathe, you can't stand.  If you can't breathe, you can't fight.  Bring on round 2 if it ever occurs."

The looks on the doctors and support group people's faces were priceless when I told them this.  A lot of it has to do with our media, putting fear into everyone.  I'd like our news media to spend 1 year with people with CF and people with end stage CF as well.

Lets just say when I was diagnosed with cancer, I was relieved.  Finally, an answer to my chronic stomach pain that I dealt with for a month.

Usually I don't make a big deal out of stuff like this, I figured what's the harm in posting my 2 year remission from having stage 4 non-Hodgkin's Lymphoma?  Also, I don't want to sound like chemotherapy and having cancer was a breeze, because it wasn't.  But. . age plays a huge factor as well.  Luck, determination, and will power always helps.



Award Of All Awards
The award below is the most important award that I've ever received, and I've received a lot through my school years, especially in high school. I didn't know I was receiving this until after my chemo was complete and I was about to leave.  This was a 6 month battle that included no grades, no attendance records, or nothing else. Just pure 120% determination and fight.

July 5th 2011 was my last chemo treatment. I had my last Positron emission tomography (PET) scan after my 5th chemo treatment and everything was in the clear, but they wanted to do a 6th chemo course treatment to be on the safe side, which usually (not everyone) receives 6 courses of chemo.  I was on RCHOP (IV chemo treatment meds above), which is a very intense chemo treatment, usually they use RCHOP for Non-Hodgkin's Lymphoma (other types of Lymphoma) and Breast Cancer patients.  It's pretty intense.



Living on Bread, Crackers, and Water
So how was I diagnosed with Non-Hodgkin's Lymphoma?  4 months after my double lung transplant (due to CF) I started getting extreme cramping to where I was sweating, and having to rock myself back and forth in a chair or in my bed for 3-4 hours to get the pain to go away.  I had the symptoms in December 2010 and after three days of stomach pain (most notable after eating/drinking juice) I called my CF doctor and told her what was going on, then I called my transplant nurse and told her what was going on.  Both decided to put me on a stool softener (MiraLAX), thinking this was a CF problem, not related to transplant.  I too thought the same thing. A lot of CFers have bowel obstructions/blockages, which I've never had in my 34 years of having CF.  I had a small obstruction in 1997 that GoLYTELY took care of.  Luckily, I've never had bowel problems since, besides this time.

So after 5 days of doing the stool softener, I got a little bit of relief, but I still was having stomach pain, especially after I ate.  My pain was still a 9/10, 10 being having to go to the ER, but I'm a CFer, a fighter, and not one that goes to the ER unless it's an 'emergency', which I've only had to go to the ER once prior to transplant.  I think coughing up four 8 oz cup fulls of blood is an emergency.  :)

At this point I was only able to eat, bread, water, and crackers.  It had been a week and I dreaded having to eat.  So my transplant nurse set up an appointment for me to see a Gastrologist (GI) doctor at UofM Medical Center to see what was going on.  So I described to the doctor what was going on, so he took me off one of my transplant meds (with my transplant doctors approval), because the medication that I was on can cause constipation, which was what I was having.  He told me if nothing changes in 3 days to give them a call back.  Well, three days came and gone and my pain was still a 9/10.  Like I mentioned above, the pain mostly occurred after I ate.  If I rocked myself back and forth for 3-4 hours, it went away.

So I headed back to the GI doctor and they performed a Endoscopy, where they stuck a tube down my throat and looked inside my stomach, and sure enough, 10 ulcers were found and one was cancer.  My transplant doctor (Dr. Kevin Chan) actually called my house at 6:00 PM (from his house) to tell me personally the news of my endoscopy, which we knew something was up, because the doctor who performed the endoscopy said the way it looked, one ulcer was cancer., but the final report hadn't come back yet.

So my transplant doctor talked to my Mom, than myself.  He told me I had Post Transplant Lymphoproliferative Disease.  Where was the cancer at besides my stomach?  They had no clue, that's why they set up an appointment for me to see an Oncologist (Cancer specialist) at the University Of Michigan Comprehensive Cancer Center (next to UofM Medical Center). 



The Plan
I saw the Oncologist and she wanted to do a PET scan to see where the cancer was at and how it should be treated, and she wanted me to do a Bone Marrow Test (BOTH SIDES) of my spine. THAT HURT LIKE A SON OF A GUN.  Who knew a needle going into your bone not once, but twice, could hurt so much.  I had never been in that much pain before (they only knock out kids, not adults, at least that's what I was told, because I asked)  They double numbed me.  I don't think I could ever do that again unless I was heavily medicated.  It hurt worse than my transplant.  50x worse.  I said a few choice words out loud (not at the nurses) but because it hurt so much.  The nurse was so kind she gave me a back massage.  HA HA!

Gosh did that hurt.  Getting hit in the face with a hockey puck would have felt like a warm kiss from Jennifer Lawrence compared to a double bone marrow test.  Seriously.  But it had to be done, and I knew that.

So my tests came back as stage 4 Large B-Cell Non-Hodgkin's Lymphoma, and the PET scan lit up like a Christmas tree, which wasn't good.  I had the cancer in all my lymph nodes (including forearms), both lower and upper diaphragm, stomach, colon, and bowel.  As I looked at my PET scan on my oncologists computer, my jaw dropped.  I basically had it everywhere, besides one place.  My transplanted lungs, which is actually where most doctors find it, which is kind of strange.  I had one thing going for me, it wasn't in our lungs (mine and Gretchen's), who was my donor.  If I could breathe, I knew I could beat this.

My parents were worried, but me?  Not at all.  As I said, I was relieved. I remember telling them that this was just cancer, not CF.  NOTHING that I've been through can be worse than having Cystic Fibrosis.  Just wait, you guys will see.  Trust me on this one.  To say I had my game face on, was an understatement.  This wasn't just another hockey game I was playing in, but the game of life.  There is no win or lose, win you must.

So the next week I started my first chemotherapy course.  Yeah, I was a bit nervous about how I would react to the chemotherapy, which I did have a bronchospasm (hard to breathe) from the Rituxan so they quickly injected me with a high dose of steroids, which didn't work.  I quickly asked.

"Do you guys have an albuterol inhaler on hand, that should do the trick and open up my bronchial tubes."

Dr. Richardson was correct-o and within 30 seconds I could breathe easier.  Within 1-2 minutes I was back to normal.  They continued my first dose of chemo and I was ready to go after 4 hours. See, those o'l CF tricks do work with new lungs.  After my first session, I had no other problems.

After my first course of chemo, my stomach pain went away within a day.  I was told that RCHOP works very well for PTLD patients and the doctors were right.  I would like to add that Chemo (RCHOP) is tougher on older patients, thus a reason for concern.  We've lost 3 post transplant patients in our support group from the same thing I had.  Being blessed is an understatement.

So for the next 6 months I knew I had entered uncharted territory.  I continued to go to my pulmonary rehab maintenance class (I can go anytime, even at 6 AM- HA!) and continued to exercise, which helped.  I did miss some days because I was too tired to go or in the hospital. Out of the 6 months of chemo, I can count on both hands how many days I missed.  Before my chemo, I did lose 10 lbs, which wasn't bad, because for nearly a month I was just eating bread, crackers, and drinking water.  It was all I could have without getting chronic stomach pain.

Also, this had nothing to do with my CF.  This was transplant related, since it was caused from my anti-rejection meds, which they quickly (I mean very quickly) changed me to another medication.

I really had no major issues during my chemotherapy, but my white blood cell count went very low.  The lowest was 0.1 and a normal white blood cell count is roughly between 4.0-10, and now mine ranges from 4.0-6.0 due to my anti-rejection meds.  During chemo, I basically had no immune system, and never got a cold or anything like that.  I was very lucky.  So through my chemo treatments I was put on Neupogen shots (inject them into your stomach yourself at home), which in return caused me to have Neupogen fevers, thus I had to be admitted to get my fevers back down.  The shots do burn, but if you do it super slow, it's not that bad.


Thank You UofM & UofM Comprehensive cancer center nurses:  
6C Pulmonary/General Medicine Wing (including Amanda Gramling) 

          Amanda Gramling

Anytime I had to go into the hospital due to high fevers from my Neupogen shots to get my white blood cell count back up, I was always admitted to 6C wing at UofM Medical Center, because I was a post transplant patient.  If I just had cancer (and no transplant) I would have been admitted into the comprehensive cancer center, but all the nurses were so wonderful there.

During my hospital visits, I got to meet the entire UofM transplant team (all the doctors) and also all the CF doctors as well, besides two.  So I pretty much got to know everyone on a daily basis, as they always would stop in and say hi, which was nice of them to do.

I remember a nurse by the name of Amanda Gramling (pictured left), who I had as my nurse on 6C so many times, including right after my transplant.  She was so nice and wonderful and actually gave me my first blood transfusion that I remember.  I had one when I was a baby and of course during my transplant, which I don't recall since I was on the operating table.  I really can't say enough about the nurses on 6C and over at the cancer center.  What wonderful, awesome, and nice people.  These nurses work so hard at what they do and thanks to Amanda and everyone else for making my stay(s) a breeze.
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So this award does mean a lot to me.  To many it's not a big deal, but to me it is.

And you want to know the strange thing about all this?  I remember about after a week of having this chronic stomach pain, I said to myself.

"I wonder if this could be cancer related to the transplant anti-rejection meds?  Nawww.  Not this soon."

Thankfully both my transplant doctor and surgeon told me (before my transplant) that there was a chance I could develop cancer down the line, we just didn't know it would be 4 months.  After doing research, it (PTLD) can develop 30 days post transplant.

Here's to 2 years of being in remission.




One of my all time favorite movies, Iron Eagle (1986) 

'Road Of The Gypsy'
1986
Iron Eagle Motion Picture Soundtrack