There and Back Again

A Cancer Tale

by Amy Cameron

Am I allowed to steal lines from Tolkien?  

or maybe.....

Cancer

the Desolation of Mantle Cell Non-Hodgkin's Lymphoma

nah...too wordy.  I like the first one better.

Anyways....   It's back!!!!

Story time!

I guess I can recap a little of my post chemo and stem cell experience up to this point.  

February, March and April 2017

I couldn't move after about noon each day.  Like physically... I couldn't move.  I was running on batteries that couldn't physically recharge.  My blood cells just couldn't do it.  This was normal and to be expected.  I went to work for the morning and then came home and passed out.  I couldn't eat.  My appetite was still suppressed. So seriously NO ENERGY.  I was still getting really bad and scary debilitating pains as well that would come and go. Boo! That is what was physically going on.  

Mentally I was depressed, confused and frustrated.  I cried a lot.  Often for no reason.  I was illogical in my thought processes.  I kind of just survived day to day.  I'm glad Abby is still here.  I'm not sure how.  I must have fed her enough.  That's a plus.  I am actually super surprised I made it through that part of the whole cancer process.  It was no good it was way worse than going through any of the chemo part of things.   I should have written more down it's all getting pretty vague at this point.  Chemo brain is real.  It was hard to function. 

Summer 2017

 I started my post chemo follow up schedule.  I hadn't heard from Dr. S and when I called to set up my follow up visit the office was a little strange.  Since I was juggled around in the beginning I wasn't really an established patient with Dr. S and the staff didn't quite know what to do with me.  Unfortunately right at this time I had gotten really sick and couldn't breath.  I called them because everything relates back to the cancer.  If I went back to my primary care and told them I wasn't doing they would freak out and call the oncologist anyways so they don't mess up.  Dr. S was out of town that week and they just told me to call LDS.  So long story short I ended up having my first follow up treatment with LDS hosptial Loveland Clinic instead of Dr. S.  Dr Ostranoff called down while I was there and made sure that Dr. S was on board with taking on my follow up care and all was well after that.  It wasn't really him it was his staff getting confused.  Oh well. 

Still feeling sluggish at this point, but not completely drained in the afternoon.  That is progress.  Appetite is getting better.  Brain function is improving, but still feel slow as snot!  I'm no longer completely depressed and my reasoning has come back.  Even looking back a year I was not right in the head.  

I spent a lot more time this summer going places with Abby.  One nice thing about surviving cancer is the I couldn't give a crap about anything attitude.  We went to the pool several times and I could care less that I'm a chubby lady with no hair.  I'm taking my kid to the pool and you can kiss my tiny hiny.  

We went on hikes and went and visited different lakes and streams that I never took the time to go see since we've been here.  It was good.  I think Abby felt like I was dragging her all over kingdom come.  Just a few years earlier and she would have been all over our adventures.  Now she is a pre-teen and disgruntled by everything.  LOL!

October 2017

My appetite is back in full swing.  In fact it has gone too far.  I gained all the weight I lost during cancer plus some.  I mention this to my Dr. at my October appointment.  He just said, "why do you think that is...hmmm?" In his Latvian accent.  I am concerned because I am not the typical cancer patient who starts to loose weight as a sign of problems.  I am a weight gainer.  Having a ravenous appetite plus being complete devoid of any muscle and energy is not a good combo. 

Plus my kidney's aren't happy.  Still my energy levels are getting better just not to what they were before.  At this point I don't even know if that is possible.  

Dec 2017

At my December appointment I find out that my Kidney's are fine but I have elevated liver levels.  Say that ten times fast!  He said there wasn't anything on the scans from October so in March when we do scans again we will see what is going on with the Liver.  At this point.  We only do scans every 6 months.  So every other appointment. 

March 2018

I finally get CT scans in my abdominal region prior to my next appointment and sure enough I get a call the next day from the nurse.  "You have fatty liver".  Diet and exercise.  Man....if I knew how to be skinny I wouldn't have been a chubby girl my whole life. 

I am still not feeling great.  Can't say at this point that surviving cancer is as amazing as they say. Don't get me wrong.  I'm grateful to be alive, but come on.  It was no new lease on life.  I don't feel any better that I did before so I'm just kind of existing in that regard.  

When I finally go to my appointment I have a new concern besides just being fat.  I am getting my headaches again.  One day during a nasty migraine I was rubbing my temples and noticed a huge goose egg on my temple.  What the heck!  I didn't hit my head.   I mentioned this to the Dr and he felt that since I was concerned we should get a CT scan done on my skull.  That got scheduled and this time Dr. S called the next morning and said that it isn't looking good and that Dr. Wood's office will be calling me.

THIS IS EXACTLY WHAT HAPPENED LAST TIME!  I started freaking out at work.  Not so much because of what it might be, but it was total de javu and that was weirding me out!

So just like last time Dr. Wood's office squeezes me in.  He looks at the scans and says, blah blah blah.    I will fill in the gaps from here down later.

It is now later:  

Funny Dr Woods

At his office they have several computers outside of the exam rooms where they look at scans.

Remember the first scans from before wouldn't pull up so I just got some really crude drawings by Dr. Woods.

This time the beautiful scan of my noggin pulled up.  He started looking at all the parts of the skull, zooming in and out.  "oh...look at these sinuses....this scan is REALLY clear.  Oooo and look at that....this will be on the test!"  At that point I finally realize the guy following us around is a "student".  In my mind I didn't think there would be a test.  I turned around to the student and asked if he wanted to get closer to the screen.  I don't want him missing anything on the test.  Ha Ha!

After a bit, in my mind, I was like can we get to the problem at hand.  Where is the creature in my head that needs to come out.  He finally zooms in on it and sure enough sitting right above my left temple is a nice almond sized growth.  It hasn't eroded the skull which was a good thing.  Don't want it getting into my brain!  So it needs to come out.  So I get scheduled for surgery and just like last time.....they are squeezing me in!  {Shall we count how many times that happens.}

Surgery : 5 hour wait for 30 minute surgery

Nothing really happens at the surgery except for the wait time.  Same day surgery is jam packed on any given day so having an ADD ON just take longer.  I can't complain....they are squeezing me in!

I really was there waiting for 5 hours for a 30 minute surgery.

He ended up taking the whole thing out along with the muscle it was attached to.  Post op he came by to tell me what he did and then he stopped mid-sentence and started laughing.  My mess of curly hair was sticking up out of the bandage like a mushroom cap or a chefs hat.  He really is the funniest guy.

Debbie came down and was there to help with Abby and get her to and from school.  She is also the Amy-sitter for 24 hours post surgery.  Cindy gets to wait with me for the whole duration. She's always a champ!

The mass gets sent out to pathology and I get a call later saying that it has markers for lymphoma. I need to get PET scans to see where else in my system this has gone. 

PET SCANS -   I show up to the Huntsman here in Logan and it is under major renovation.  I get to take more witches brew to light up any cancer cells.  Ground shaking.  45 minutes in the tube.  

I was told that they had ordered scans from the top of my head to my thighs so I would be in the tube for a while.  The scanner gets taken all over the place so it is a mobile unit outside.

Notice the machinery right next to the unit.  The ground was shaking so bad.  The team was assured that the vibrations do not cause problems with the machine.  I had to sit still but the machine doesn't!?  LOL  When they got me in the tube they said that DR. S just ordered a head to toe scan so just kidding I will be in there even longer.  I was in the tube 45 minutes.  Two thirds of the way through I had to get out and go in feet first.  The table isn't long enough to do head to toe in one scan.
Good thing I am not claustrophobic!

Later I get a call from Cindy Nordling my LDS Loveland Coordinator.   They are super bummed that I am coming back.  She was shocked by my cheeriness.  I don't know if most people go into total shock and get all down in the dumps.  That would be total normal right.  Why do I just roll with the punches.  She even said, it is okay for you to be sad.  We were commenting on how positive you were during your treatments before.  Maybe I should break down into hysterics for them.  I don't do sad.  I do mad and happy.  That's just me!