9 Rounds down!

Happy Tuesday Everyone!

This is a full week of radiation appointments.  Every day  I go in and get my neck and back targeted.

My days are pretty good.  I “function” pretty well.  I can’t drive because of my episodes so I sort of have to be “babysat” all the time.

The worst thing about this time around is having these “episodes.”

It usually happens as I stand up.  My head fills up and starts to throb.  I can also feel the blood start to rush out of my arms and legs.  Then I get disoriented.  If I don’t sit back down or lean on something to steady myself, I will fall to the ground.

Sunday night I fell.  Falling really sucks.  I really hate it.  I don’t like not having the control of my life.  I do hope that once we finish the radiation that the episodes will end.  We are thinking that there is an artery being pressed on and that is causing the issue.  Once the radiation is over, the cancer cells should be gone and hopefully this will end.

If not, I just don’t know what to do about it.

Everything else is moving exactly as it should be.  I have radiation this week and Monday, Tuesday, Wednesday of next week.  Then I will be finished.

Fingers crossed that the episodes stop!!!

This entry was posted on December 3, 2014. 1 Comment

Monday

Hello my friends,

Let’s fill in a few days!!!

I have one third of my radiation treatments complete!!!  5 down – 10 to go!

I have a pain med that does give me some relief from the pain I have been feeling since March — with side effects that do not require ER visits or time vomiting!!!

I still have these episodes that include “losing the floor.”

When  I stand up, I seem to have about one minute before my world starts changing.  There is a pulsing in my head, sometimes I feel the blood drain down through my arms/legs and then I had better find something stable!

When it’s happening, I don’t feel dizzy.  I feel disoriented.  I don’t lose control of my muscles or anything like that.  I can move.  It just seems like my brain says “Um, there is no where to go.  We cannot locate the floor so you had better stop and get down.”

So I lose the floor.

This morning I got out of bed about 6 am to make a bathroom run.  I had no problems.  I was returning to bed (it was dark) and the next thing I knew, I was on the floor.

I don’t just fall over like a tall tree – timber/crash.  I know it’s coming, I ease myself down.

On Facebook this morning I did ask for some GO FIGHT WIN cheers from everyone — which was greatly needed today.

I had a meeting today with one of the Radiation Oncologists.  He really didn’t offer much in terms of dealing with this falling thing.  He isn’t my regular doc so I wasn’t expecting much.  His suggestion?  “Be like an 80 year old woman.  When you need to stand up, you sit on the edge of your seat and wait 5 minutes.  Then you stand up and wait 5 more minutes to get your bearings.”

That’s the solution.  SIGH.

In other news –

I do NOT need a Spinal Tap!!!!  Oncologist Dr. H doesn’t think cancer cells have gotten into my spinal fluid based on results of tests I have had.  This is GREAT news!!!  One less procedure AND one less piece of BAD news!!!!

This week…

Meet with Oncologist Dr. H tomorrow

Radiation through Wednesday

On Wednesday I have to have the biopsy of my hip.  It will be at Edward.  This biopsy will ensure that the cancer cells are the same as before.  We are confident they are, but this will make sure.

As always, I am so thankful for everyone’s help and kindness and thoughts and prayers.

Sammy is being so incredible!!!  He drives me EVERYWHERE because I don’t know when I might lose the floor.  He has single-handedly taken over being in charge of EVERYTHING…. Mom, Dad, Provider, Driver, Cook, Laundry, Homework, Real Work….I don’t know how he is keeping it together, but he is and I do NOT know how I would be doing this without him!

This entry was posted on November 25, 2014. 3 Comments

Glitches happen

I am having issues with pain meds.  I never really have before, but for now, it’s annoying.

Last week I was using Hydrocodone and I couldn’t keep food down.  I lost 5 pounds over the weekend and have sworn off that one!

On Tuesday, Radiation Oncologist Dr. L suggested another pain med.

FYI – I’m in pain pretty much 24 hours a day.  My neck is really sore and I have lousy range of motion because of it.  My lower back is also sore.  Let’s not even toss in the hip pain from my surgery AND cancer that is munching on the bones.  There’s a lot of pain happening.

Last night I take one of these new pain meds — hydromorphone.  2 mg.  TINY little pill.  About an hour later I turn to hubby and say “I feel like I have Frankenstein bolts coming out of the side of my head.”

er3

He looked at me and agreed that my neck/face was swelling up.  We called in to the oncologist who said to get right to the ER in case further swelling caused any airway problems.

Now it’s like 9 pm so we get the kids up and bundled and make a family trip to Edward ER!!!!

I had great care from Nurses and Doctors.  Mega thanks to In laws for coming out to grab the kiddos to bring them home to get to bed!

 

er1

 

I was also able to receive a cocktail of drugs – benadryl, tordol and something else — with an IV!!!!!!!!!

er2

I’m telling you, I look like a heroin addict with all the holes in my right arm!!!

I got sent home with some more drug scripts – we are going to try Percaset now.  I’m going to be honest, I’m NOT too excited to try something else.  I mean, my face is still a little tender and swollen from last night.  Maybe just dealing with it and taking Tylenol is just supposed to be my lot right now.

I’m also upping my steroid “dex”  That one we have been playing with so we shall see how that affects things.

We got home around midnight maybe and I just crashed out.

I had to be back for more radiation Thursday morning at 9.

I got in and set for round 2 in the mask.  I am happy that it is a short scan because the mask is really tight on my face.  It actually leaves a little bump on my nose.  I keep my cool because I don’t rock any boats, but phew…. it is pretty confining and I am glad when it comes off.

As I was leaving, I noticed a voice mail from my oncologist on my phone.  He called while I was in the machine.

He heard about the ER visit, saw my spine MRI and wants to know where we are on the biopsy schedule.  Since I am in the building, I just jump on the hospital phone and call on up.

  • Looking at the spine MRI, there seems to be a concerning spot on L1.  He and radiation oncologist talked and thinks that while we are hitting the cervical spine, let’s hit this one too.

spine1

So remember -

In my neck we are hitting C2, C5, C6

 

 

 

 

Now we will be adding L1 to the list

 

on

 

 

 

  • As for the biopsy.  I told him I hadn’t heard anything yet.  “You will get a call today.”

So I got to go BACK into radiation to get marked up for Spine Radiation.  I put on a half gown and hung out for a bit while they got things ready.  I also got a treat!!!  I had a warm blanket to wrap around my legs and a scrumptious piece of chocolate from Le Chocolat downtown Naperville that someone had brought in.  YUM!!!!

Once they were ready for me, I headed in.  I lay down on the table and Becky started getting everything lined up.  This setup involves having my tummy exposed.  It’s not exactly swim suit season!!!

I’ve got some Sharpie marks and tabs on my midsection right now.  I have to keep them on until tomorrow when they finish the process.

Tomorrow I go in at noon to get everything done.

I got the call for the biopsy too.  I will be at Edward next Wednesday at 10 am for a 10:45 procedure.  They are going to take some cells from my hip to check.  It will take a few days because of the process.  The results should show us the characteristics of these cancer cells to make sure we are killing them the right way!!!

Finally, I will be back to visit Oncologist Dr. H on Wednesday as well for a check in — hopefully no craziness between now and then, though I make no promises!!!!

 

ROUND 1 – FIGHT!!!

round one

 

I meant to have a quiet day at the house today.

I got a call from Radiology asking if I could run in today at 3:30 and start radiation.

SURE – why not?

So I run over and into the plastic maiden.  It was a little tighter than yesterday!!

They had some settings and adjustments to make.  Dr. L had to authorize the views to make sure everything was fine.  They had the machine do its thing on each side of my head and then I was done.

I also got my full schedule –

Wednesday, Thursday, Friday this week

Sunday, Monday, Tuesday, Wednesday next week

Monday through Friday the first week of December

Monday, Tuesday and Wednesday the following week and I will be done!

So I will be back again tomorrow morning!!

This entry was posted on November 20, 2014. 1 Comment

Let’s get ready to radiate!!!

I met with Radiation Oncologist Dr. L.  She is a breath of fresh air and full of important information!!

neck 1

See these pink cervical vertebrae?  These are the MOST affected areas of my body right now.  The cancer is eating away at C2, C5 and C6.   We are going to use the radiation to destroy the cancer cells at these locations.

I had the set up on Tuesday afternoon.  This is WEIRD!!!

neck 4I laid down on the table.  Check out the feet in this photo.  Do you see how her feet are pressing on that board?  OK — the there are ropes coming out from the board.  This person is pulling on those ropes.  It didn’t totally go like that for me.  I had the board and the ropes —- but then it got different.

My situation involved having my wrists strapped in so the ropes would pull my shoulders down.

During radiation of any kind, it’s crucial that you are always in the exact same place every time for consistency.  There are all kinds of ways to ensure that consistency.  For MY case, I have to keep my shoulders lowered.

Then there is the mask.

neckThis started as a flat piece of plastic.  It was placed on my head/shoulders in a warm and wet state.  It was clipped onto the tray I was lying on.  The techs then pressed the mold into place onto my head/shoulders.  It felt weird.  I could sort of see out and I could breathe.  There are lots of holes — but really small so everything looks blurry.

Once that was done, they wrote on the mask places to track whatever they need to remember!

Then I got to run upstairs to get s shot in my stomach — oh yay!!!  You know I love shots….

Have you seen theses ads on TV?

boniva

It’s a shot you get every 6 months for women with osteoperosis.  This shot that I will be getting MONTHLY is a super charged bone growing shot.  It stings!!!!!  But it is going to help my bones start growing back the holes cancer has made in my bones.

When the radiation destroys the cancer cells, there will be some gaps in my bones which need to be filled in.  My body can do this.  The shot will kick my body into gear to really get going rebuilding my bones.

I had to also get the MRI for my spine that night.  It was REALLY long – I had one hour to lay there, then get a shot for contrast and lay there another 30 minutes.  We didn’t get home until almost 10 pm.  UGH.

Quiet day scheduled for Wednesday.

 

 

I should update you

HI.

It’s been a long couple of days.

Thursday – I had an appointment with Dr. H Oncologist at 11.  We get in the car and head out.  We go through a few things.

He then wants some blood.  Now, I HATE needles and usually have to prepare for blood draws.  Food and Water are important.  I hadn’t had time to prep.  It wasn’t good — let’s just say there was a loss of consciousness.  Then we moved into a treatment room and ran some fluids through me for a bit.

I got home and had to prep for my PET scan.  This scan requires that I have NO carbs of any kind past 5:00 pm that night until after the test.  I also had to fast 6 hours before the test.  The test was at noon.

I had the PET scan and then headed home.  It was rather uneventful.  I had a glucose test finger prick first.  Then I had to get an IV to get the injection.  Then I sat for a while and waited for it to get through my body.

Then I got on the table and spent 30 minutes for the painless scan.

Later that evening, Dr. H Oncologist called with results:

NO ORGAN INVOLVEMENT!!!!!

There is bone involvement.  There are cancer cells in….

  • my neck at C2, C5, C6
  • my lower back (to be determined by an MRI on Tuesday)
  • my hips

What do we do now?

Tomorrow, I have an appointment with Dr. L Radiation Oncologist.  We should be able to get a plan of action to start something.

I need one more MRI to finish up the affected areas.  I have one of my brain and of my neck.  We do need one more of the spine because of my lower back pain.

The weekend was spent feeling yucky and trying to get food back in my and enough liquid in me to function!!!  I’m finally feeling that way today and got some things done!

I should have some news to report tomorrow about treatment!!!

Thank you all for following along.  I hate that I have to start writing this again.  I hate that my family has to go through this again — whatever this is.  I was ready for normal.  I was ready to just have a life that was healthy.  Not gonna happen yet.

This past week I was NOT in “Go Fight Win” mode.  I was in a dark place.  I was places I never went the first time around.  I’m getting revved up now.  I’m feeling better and getting ready to fight this – again and again and again.  Because I have a lot to do.  I have so much to do.

This entry was posted on November 18, 2014. 9 Comments

Wrapping my brain around — well, my brain

I’ve been having some weird issues over the past three months.

My friend J says I’m good at listening to my body and paying attention to what is going on.  Sadly, I think I’m reacting later than I should have.

Late August – I started having some neck pain and some episodes.  My head would feel “full” and would throb.  A few minutes later, it would pass and everything would be fine. I figured it was sinuses or an ear infection.

I hate hip surgery October 1, so that took precedence over some little head thing.  I was on crutches and seeing physical therapy three days a week and trying to keep everything together!  But the episodes continued and were starting to get worse.

When I would stand up, I suddenly would feel unsteady — not dizzy.  I just felt like I couldn’t walk straight or keep balance.  So I would sit back down or work through it if I was out somewhere.  That is NOT easy to do.  Because along with that came double vision.  I was walking through the grocery store last week without the ability to feel sure of my footing and everything looking like twice what it was.  UGH.

It is imperative in my public life that I look like I have my shit together.  Always.  If you saw me that day at Meijer, I would have put on quite the show for you.  You’d never know that all I wanted to do was curl up in my bed with my eyes closed until it passed.  But I stuck it through because that’s me.

Back to the story — Let’s look at the timeline now.

  • September – episodes of throbbing in the head and occasional unsteadiness upon standing
  • October – same episodes but now with double vision and constant pain in my lower back and neck
  • Late October – go see my General Practitioner Dr. K.  We try amoxicillan though probably not it
  • 10 days later, Dr. K says go see an Ear, Nose and Throat.  He says – you don’t have any issues with me, see a neurologist.
  • November – meet Dr. M the neurologist who orders two MRIs – one of my brain and one of my neck.  To see what is going on.  The brain is a secondary scan because sometimes there are lesions due to cancer.
  • November 5 and 7th – MRI are done
  • November 8 Dr. M the neurologist calls.

Let’s talk about that phone call:

Dr. M “I have your results and I would like to see you to discuss them.”

J “OK, but you can tell me something now.”

Dr. M “No, I really need to see you to discuss.  I have an opening Tuesday at 3″

(It’s Saturday at 1:00 when we are talking.)

J “Yeah, I don’t work like that.  Tell you what, give me your top three ideas.”

Dr. M “You really want to hear something over the phone?”

J “Yes.  I need something.  I cannot wait until Tuesday and come in cold.  I like to have questions prepared.”

Dr. M “Ok.  There are lesions on your brain.  So I will see you Tuesday.”

So there it was.  Brain lesions.  What is a brain lesion?  Why was it there? How did it get there?  What do you do?

I know — lots of questions, and not a lot of information.  And so I spent my weekend waiting.  I also contacted Sue Ward.

Sue doesn’t work for the American Cancer Society anymore.  She works for the American Brain Tumor Association now.  How perfect is that????

Sue got me hooked up with some great information.  Excellent resources.

And I’m going to leave you in this state.  Unknowing…..Wondering…..

This entry was posted on November 12, 2014. 7 Comments