Hopeful Hearts Ministry

I’m going out of the box here and publishing my thoughts I kept track of for the last three days of this scan/ radiation/ isolation / treatment plan. It’s been more eventful than I ever anticipated so I figured I’d simply share with those that were curious.

**Warning** This is a journal of my thoughts and what happened through the day. It is not meant to be poetic, or award winning literary prose. It is simply me. 🙂

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Journey through Final Thyroid Cancer treatment

 

Day 1

I arrived today at MDA 7:30am …. My nerves were causing my bowels to erupt. I couldn’t eat. It isn’t FEAR that has me. I know I can do this. It is the ANXIETY of not knowing what I am looking to have to do. Just the not knowing. I think that is mostly the case with cancer patients. We’ve resolved to the fact we have cancer…then we get to the fight. Okay, so let’s fight. But it’s a lot of WAITING. And then MORE WAITING.

That’s the frustrating part. Is it working? What is the next step? How LONG will this actually be?

And, for me, who, as of this weekend, was told by a person who has NEVER HAD thyroid cancer – “It’s the ‘best’ cancer to have’… – I sat I the waiting room for my blood tests for an HOUR and thought, ‘This is Cancer.’

THIS – the waiting to get the blood tests. The blood tests. The needles. The scans. The waiting for results. The having to be at a place you don’t want to be but it’s a part of the fight. Packing the patience.

So I waited till I was called at 8:54am for my blood work to be drawn (my appointment was at 8am and remember I was ½ hr early).

At 9:07am I arrived at the Nuclear Medicine floor (4 floors up) and signed in. I was greeted by the same gold toothed (it’s a partial ‘grill’ with a star in the middle) receptionist. “What’s the last name?” “Can I verify the armband? What is your MRN?” and just before she sends me off she whispers deeply “Did you know you have an outstanding balance of $4567.89?”

I laugh, because the way she says it is with such incredulous disbelief. Though, I’m pretty certain there are many others who have much larger outstanding balances. “Yes, I’m aware, I’ve set a payment plan. Until I my money tree grows in the back yard I’m giving you guys $100 a month.”

Her gold-toothed grin got wider. I made her day, which made mine.

I should have told her ‘And I have ANOTHER $4500 hospital bill that LED me to this one so maybe ya’ll can duke it out??’

I sat in the waiting area for about 20 minutes and was called back into a small room and sat in a rather large and deep plush plastic chair. My feet dangled with a whimsical wonder of what was to happen next.

I filled out my consent to treat. Signing off that even though this is the ‘best cancer to have’ that even our treatment can have complications and cause death. Who knew (I say with great sarcasm… it’s not having a thyroid or thyroid replacement meds in the last 3 weeks so forgive the SARCASM)….

Then I had to wait.

WAIT again…because we actually needed that blood work in order to know if I needed a Thyrogen shot before we progressed. My TSH levels (high thyroid levels that show something is amiss with your thyroid) needed to be high in order for the scan to take properly.

I waited for 2 HOURS. Because it is Monday. It’s a busy day for fighting cancer.

It’s okay because I packed my patience (good girl) …but I failed to pack a jacket or snacks. The nurse brought me two warm blankets and I curled my legs up underneath me and read my book.

Finally, the results were in – NO SHOT NEEDED! Yeah me! It’s the only ONLY time I’ll celebrate having a high TSH level. EVER.

So the Radiologist came in and explained what was to happen. I would receive a ‘tracer dose’ of radiation so it could go through my body for 24 hours….so tomorrow I could get the body scan and anything that could possibly be ‘thyroid’ would ‘light up’. And depending on what that was and how much etc my Endocrinologist will determine if I need the Radiation therapy and if so, what dose. The amount is what determines my complete isolation stay.

At this time, the nurse comes in carrying a very thick medicine bottle in gloved hands. She hands me gloves and two glasses of water. I put on the gloves and I’m given 7 pills of radiation in the palm of my hand. It was most likely my imagination but I swear I could feel their warmth. Two by two I took them.

And then I was free to go.

I came to my place of refuge, which is only a few miles from MDA and set up house.

 

Day 2

Headed over to MDA at 8:30am and was immediately brought into Nuclear Medicine where they set me up for the full body scan. I laid in the machine and closed my eyes.

“I need you Lord, oh how I need you. My one defense, my righteousness, oh God how I need you.” This hymn (in the voice of the LIFETEEN choir) played over and over in my mind.

For 40 minutes.

Then they had me drink some water because something was showing up on my esophagus. They wanted me to make sure I drank water to wash anything down (ie Radiation) that maybe hadn’t been flushed down.

Another 20 minutes under.

“I need you Lord, oh how I need you. My one defense, my righteousness, oh God how I need you.” (I couldn’t remember any other lines)

Then it was done, as quickly as I was ushered in I was ushered out.

I looked at my MDA account to figure when and where I was to meet with my Endocrinologist to find out my results. My appointment was in 10 minutes on the other side of campus.

I hopped on the little tram system they have and was off.

Again, sat down only to be called back and before I knew it I had Dr. Habra in front of me.

“Where is your husband?”

“Six feet under in our backyard. Being off the Synthroid really got to me.” 😀

He had a resident in there that I wasn’t quite sure about me….”I’m kidding, I said.”

Dr. Habra laughed. “Well, good news then. I’m putting you back on the Synthroid tomorrow.”

This was good news!!!! That meant that I could be on my way to being ‘me’ again sooner than I thought.

AND I get to get off the LOW IODINE DIET tomorrow!!!

But…..

They found a spot show up on my scan on my throat/esophagus area. So, because of that I am receiving the low dose of 30m(?) radiation. Which means at 2pm today when I receive this radiation I will go into isolation.

However, from what Dr. Habra says I will be able to go to stipulations and be around people by Thursday.

Not so bad.

2pm I headed back to MDA to receive my RADIOACTIVE ISOTOPE PILL. When I checked in with my friend (I’ll call her ‘STAR’ b/c of her awesome dental jewelry) she looked at her screen and said, “Oh GIRL, I haven’t seen someone get this in a few weeks. You ARE special. MmmHmm… yep, they gonna light you up!” (No, I’m NOT exaggerating. J)

When I went back I was checked by two Nuclear Medicine nurses that, in fact, it was me, just to make sure they weren’t giving this to the wrong patient, and then they disappeared to put on some very thick gloves before wheeling in a box with the radioactive sign on it. Inside the box, under a thick type of covering, was a medal cylinder. And inside that cylinder was a gray pill that looked like a Tylenol. They gave me gloves to wear and three glasses of water. They took the pill out with tongs and placed the pill in the palm of my gloved hand. I took the pill.

Over. Like that.

They left the room and I was told to drink all the water and tap on the door when I needed refills. That I needed to go to the bathroom at least 2x before I left. Plus I had to stay in that room for at least 2 hours to make sure nothing major happened.

After about 30 min I became a bit nauseous and then light headed but nothing too major. By 4pm I was ‘released’ to go directly to my car and to my place of isolation, and to avoid people if possible. Being that late barely anyone was still in the waiting rooms so it wasn’t that hard. Which makes me think they did the timing on purpose.

When I go to home I was exhausted emotionally but I had to keep drinking water which made me go to the bathroom every 30 min. And every time I flush (for the next week and a ½ ) I have too flush 3x to keep it from contaminating the area, because my urine and sweat is the number one place the radiation will come out.

Day 3

Sleep evaded me. I got up 4x to use the rest room and my mouth was DRY. Finally I needed to actually ‘get up’. I put on my ‘I AM RADIOACTIVE’ t-shirt and walked the short walk from my place of ‘isolation’ to MDA and my 10am post scan. Even though I’m in isolation I was given the directive to simply keep a 3ft personal space bubble around myself when I encountered others. So I didn’t go on crowded elevators etc.

I said hello to ‘STAR’, my friend, and showed her my shirt, which gave her a great kick. I was ushered into the scan pretty quickly (which wasn’t shocking hence my ‘level’ of radio activeness) and the technician laughed about my shirt as well.

“I have a friend who works at the Nuclear plant where they make the medication we gave you yesterday. He bought a shirt that says “I’m a Nuclear Physicist, if you see me running, FOLLOW ME!’”

I needed that laugh. 🙂

The scan was the same as yesterday. Except today the nifty tune “I’m radioactive, radioactive.” Played over and over in my mind. Nah, I’m not OCD much…

The Dr. who checked the images found something on my chest area and ordered me to receive a 3D Chest scan.

I wasn’t too surprised. I just had a follow-up chest CT a week ago and was told they found some spots on my lungs that we were going to monitor every 6 months.

I was ‘escorted’ the mile underground walk (literally I got to go through corridors only employees go into) to the main building and immediately put onto another machine.

OH, lol, before I was put on the machine I had to take off my bra, but they couldn’t find a gown (b/c only patients from the actual hospital tend to come to that machine, those who are already IN gowns) so I did the ‘whip off my bra without taking your shirt off’ routine that every girl knows. LOL the tech looked at me and shook his head, “Okay young’un.’

This one was like the Taj Mahal of machines. I even had a TV to look up at which was on HGTV …though once the scan started I really couldn’t ‘watch’…I had to only listen.

Two 1.5 hour scans today. FUN

Once the scan was done I was told to talk to my DR about an appointment that the scan wouldn’t be read until this afternoon.

So I went to my Endo’s area (once finding my way out of the wherever I was…by the way, no escort this time so that was interesting) …. And had to literally play ‘dodge-the-people’ to avoid being around a lot of people at one time.

But I had my shirt on so I WAS giving a warning to others!!!

After some waiting, and talking to a few nurses, etc, my Endo met with me and said so far they aren’t seeing anything ‘concerning’….but if something shows up on the 3D scan then I guess they will call me for an appointment.

With that I was told to go eat ‘seafood’ (because it was #1 NO on my diet…but I’d rather have cheese J) and to keep playing dodgepeople on my way home.

I was in the hospital from 9:45am – 1:30pm. This isolation HAS NOT been very ‘relaxing’.

I’m emotionally exhausted.

Besides the havoc this radiation is doing to my bowels. Ugh.

So, here I am, finally, ‘at rest’ and I will head home tomorrow.

In time to see my son’s last choir performance. In time to go shopping for something to wear to his graduation. In time for mother’s day.

But there is one thing ‘off’… There is no ‘YOU ARE FREE OF CANCER’ or ‘ YOU KICKED CANCER’S ASS – RING THE BELL’

Nothing.

I picked up a piece (the ONLY piece they had, I think GOD had it sitting there just for me because HE knows it’s my FAVORITE) of yellow cake w/ chocolate frosting in the cafeteria and ate it just now.

Yeah me. 🙂

My next ‘official’ appointment with this ‘thyroid cancer’ is a follow-up ultrasound and visit with my surgeon in September.

And my Endo said I don’t see him for a year!

And unless this 3D scan says something then I don’t see anyone about that till October for a follow-up CT.

But I do come back to MDA Monday (yes, YES, Monday) for my routine follow-up with dermatology for my Squamish cell carcinoma that I had two years ago.

Otherwise…. Do I dare say I did it?? I’m cancer free?? So anti-climatic.

Regardless, I had the cake, so ‘yeah me’! 🙂