Four treatments done, one to go and how am I?

Covered in soft set cement. {lethargic - tired} Nauseous. Head hurts.

Why? Me + radiation.

Me = GH deficient causes fatigue. Thyroid deficient causes same and weeks before medication will help.

A radiation side effect is- can you guess? Yes, fatigue. Triple whammy. Also radiation works over time so the fatigue is supposed to peak weeks after I'm done.

Nausea - A radiation side effect or my poor working pituitary reacting to the stress of undergoing radiation.

Head hurts from being tightly held in place during the treatments.  However some pain in exchange for the certainty I don't move so the radiation is delivered to the proper place is fine. I'm protective of certain things like my optic nerves and brain.

My last treatment is Monday Jan. 3rd, as anxious as I am to have this over, I'm glad to have a few days rest. I cannot imagine how hard it must be to do the five days a week for six weeks schedule, even though the radiation dose is lower, it has to be grueling.

How will thyroid replacement help?

Hoping energy increases, moodiness decreases, no dry skin and to stop feeling cold all the time.

Have I noticed any change?  No. However doctor said it would be four to six weeks before I would. Plus right now the radiation therapy is overshadowing all else.

Will I lose weight?  Wouldn't that be nice. One magic pill, hormone, and I'm like our eldest boy. Reality maybe a couple pounds. Over time, increased energy means more activity so, as always, it's up to me.

Will dose remain the same? Unknown. I'm on lowest dose. Radiation can further lower my function. In February I'll be tested again to see how I'm doing. Adjustments are likely.

First treatment

Had my first dose today.  Took longer to run the set up scans.  Surprised when they said I was done.  I drove most of the way up with Chris sleeping in the passenger seat (he works night shift) then he took over at a rest area about 20 miles out.  He got some rest in the car while I was treated, drove for a while to make sure I was okay, tolerated my treatment all right (and we picked up younger boys from our eldest's place where they'd spent the night) then I drove us the rest of the way.  I felt wiped by the time we reached home.

I worry about my hubby, his sleep so broken up.  He's coming with me each time, worried about how tired I am and may become,  to make certain I'm good to drive.  Wish there was high speed rail from here to OHSU or Star Trek beaming technology :) 

It's going to be a long week.

Time frame for the radiation

5 treatments, every day for 5 days.  Yeah that blew me away too.  I asked if the appointment I was given for my first treatment still held and it stands. A little intimidating but appeals to my rip the band aid off let's get it done mentality.  Excited that I may get it all done before the end of the year.  I'd be wonderful to have the big, scary, nasty stuff behind me and have a fresh start with the new year. 

All but one result is in

IGF-1 which basically measures growth hormone takes about a week to process but really it doesn't matter. I can't regain hormone function once it's lost. My basic blood work (glucose, sodium, etc.) is okay. My cortisol dropped some from last time but is still fine and functioning. My thyroid isn't. Doctor ordered medication, Levothyroxine starting tomorrow morning.

Another day another OHSU appoinment

I know it's been four days but sometimes it feels like I was just there.  Not going to complain though my reality could've easily been driving there daily for weeks on end.  I'll just smile and be grateful.

Tomorrow is my post surgery full pituitary hormonal testing.  Sounds intense huh.  It's not.  A couple minute chat with NP, a blood draw, medicine injected, a 30-45 minutes wait then another blood draw and I go home to wait.   Hopefully I'll learn the results before Christmas.

After my previous surgeries I anxiously awaited this appointment, hoping I retained function.  This time I know it's just a snapshot in time.  Radiation will soon alter my pituitary function.

Number of Radiation treatments

I would've loved to have the one time single dose and be done but Dr. Fuss gave me almost as good of news. After reviewing my MRI, he says I'll need 5 treatments, my favorite number :)

As yet I don't know the schedule, he said they will finalize my plan this week. When I know I'll post it.

Vision test results

I'm good.  No damage from the tumor or the surgery.  Some months after radiation I'll have another visual field test and I hope for the same result :)  

The Simulation & MRI

The simulation was fast.  I lay on the table.  The therapist put the warm plastic over my face, small hole for nose and fastened it down on either side   It molded to my features, not unpleasant but odd.  I could feel my blood pumping hard across my cheeks.  For some reason I thought of Han Solo being flash frozen. 

The therapist ran a quick CT scan, 5 minutes maybe - table is attached, slid me in and out.  He marked on the mask then freed me.  My mask went into a cupboard.  I get to take it home after I'm done with radiation.  Paintball anyone?

Next I had an intensive MRI.  Usually my MRIs take about 30 minutes but not this time.  Dr. Fuss must be very precise.  Two hours was a very long time to be in a small loud tube. 

I had contrast with both the CT & MRI so they're having me drink tons to flush it out of my system, my kidneys.  I feel worn out and my head is killing me.

The therapist gave me my first radiation appointment as I was leaving.  12/27/10 at 12:30.  We still don't know the number of treatments.  The doctor was reviewing my scans Thursday night and said he'd get email me, probably Friday, to let me know.  After waiting all day, my dear hubby doing his best to keep me from going batty - movies - brownies -  he's cute - the doctor never did email. 

Now on one hand I know from painful experience if there was something horrid or needing immediate attention I'd have been contacted so that's good.  However that's small comfort.  So soon after surgery I'm not worried that the tumor has grown again.  I'm sure that the good doctor was merely busy with other patients who have life threatening conditions.

BUT selfishly I want to know the number so we can try to make a plan.  The 5 days a week for 5 to 6 weeks treatment plan seems daunting.  I don't know how we'll handle that.  I try not to think about it too much.  We'll cross that bridge only if we must.

The waiting is hard because there's nothing I can do to effect the result.  They weren't tests I could have practised or studied for, it made no difference if I rested or not, exercised or not, ate junk or healthy, lost or gained weight, argued my point of view or plead my case - the results are what they are. 

My hope, my Christmas wish, my prayer, is Dr. Delashaw reduced the tumor enough so it's safe for me to do the single high dose.

4 1/2 weeks post surgery

How am I?

Mostly recovered from the surgery. Headaches have lessened. I've had days without one but on average I start the day without one and end the day with one, usually slight now though. It's impossible to know if that's from recovering,  a poorly functioning pituitary or eye strain since my glasses don't help as they should.

Light still bothers my eyes and leads to a headache if I don't manage it. Doctor doesn't know why but doesn't think it's dangerous or a sign of something horrid wrong.

I tire easy, often lethargic. Causes: recovering from surgery, lack of GH and/or it's probable that I've other hormonal deficiencies now. Whatever the cause the result is familiar and annoying. I can not express how tired I am of being tired.

I'm cold, wearing layers of clothing, a hoodie or sweatshirt, long johns and a hat often inside. That's hormonal. Until radiation is complete, and I can go back on GH, it's something I'll have to live with.

I've a hard time concentrating, brain foggy and forgetful. Hormonal.

I've varying degrees of nausea daily. Doctor thinks it's hormonal - shocking I know - it could just go away eventually as the pituitary heals or the tests on the 21st will show something low and they'll put me on replacement. It's only the growth hormone replacement that must wait until after I'm radiated.

My nose is back to normal. I can sneeze without crying. Cold air doesn't make me cringe. If my head hurts I only need a couple ibuprofen which is a huge improvement.

I'm doing okay, holding my own. I'm impatient though. I want testing and the radiation done, my hormones balanced and my life back.

Visual Field

Tomorrow I've visual field exam. I had my last one April 2009 two months post surgery. I'll learn how my vision compares to last time, how well or damaged it is now. Always nice to know :) but necessary before radiation. If my nerve/s are already damaged, it makes them more susceptible to damage from the radiation and Dr. Fuss has to adjust for that to protect my vision.

Although currently my vision is a little blurry even with my glasses, I can't do an exam and get a new prescription, a new pair yet. The radiation can effect my vision. I have to wait until some time after my treatment is complete. Waiting is hard.

Simulation

During this visit they plan the best way to send radiation to the tumor. A radiation therapist will have me lie on an examination table and stay as still as possible then she'll help move my body into the best position for treatment. I'll need to stay in that position while the medical team plans the best way to give me radiation. They'll then create a special mask for me to use during treatment in order to keep my head in the exact position for however many treatments I'll need.

The therapist may need to make some temporary marks on my skin and/or place a few small, permanent tattoo marks to show where the radiation should go. (Wow a tattoo I'd like a phoenix please.) These tattoos are about the size of a freckle. (bummer) They may also take some X-rays.

As soon as Dr. Fuss reviews the test results and makes my treatment plan, I'll learn what option I get and a appointment/s.

What we learned

Treatment options are:
28 daily doses = 5 days a week for 5 1/2 weeks - lowest single doses so lowest risk
5 doses - rarely done - he'd have to check my situation against some research
1 dose - very rarely done because the tumor must be at least 5mm from the optic nerve for him to consider the one shot radiation - high single dose = higher threat.

Dr. Fuss is most concerned with protecting my vision while radiating the tumor. It's possible although I can see either the tumor re growing or the surgery has damaged the optic nerve/s. Damage would make it more vulnerable to radiation. I must have a visual field exam to assess my current status before any radiation. My eye doctor might be able to work me in tomorrow.

Risks are as expected. My risk of losing all pituitary function is high because before surgery it wasn't great, growth damages, surgery damages and radiation damages. Also despite all care I may lose vision in one or both eyes. That risk is low.

Side effects - fatigue so I'll go from feeling like a snail to a sloth and if its the long treatment then I could have some hair loss and skin irritation.

My next visit, the simulation, is on Dec. 16th. I'll have a CT and MRI that day. They overlay the test results to get an absolute accurate picture of where and how large the tumor target is. He'll know from those tests which option I'll have to do but warned us that it usually takes him a week to write up the treatment plan.

The first radiation therapy visit is called

the consultation visit. We'll get to watch a video, meet Dr. Fuss and learn how radiation therapy applies to my tumor.  He'll explain my treatment options, the possible side effects of radiation and how they can be managed.

Surgery alters the size and placement of the tumor but it'll be at least a few more weeks before the surgical swelling is gone so they can do an accurate MRI.  However since the pituitary hangs out beneath the brain it's helpful :) to be accurate with targeting.

The surgical team scheduled an MRI in February but this doctor will likely alter the time frame to best suit my treatment.  I'm hoping for as soon as possible. 

I'll need further appointments to get ready for radiation, the next one is called the Simulation visit.

Radiation therapy

I confused my pituitary office manager when I called today about still waiting for an appointment with the "radiologist". A radiologist is the doctor who reviews MRI's and x-rays :) OOPS!

Once I explained what I meant she understood and transferred me to the radiation oncology department(still haven't a clue what's the proper reference to these kind of doctors).  Moving right along I'll see Dr. Fuss  click here for the radiation doctor's information on Dec. 9th at OHSU. 

This is an initial visit.  An MRI isn't scheduled at same time so few answers are likely but it's a start.

Still waiting

For my question about my cortisol stimulation results to be answered. "sigh"

And to hear from the radiologist's office about scheduling an office visit, a post op. MRI and hearing his recommendation as to what type of radiation I should go with.  "heavy sigh"

Waiting isn't my strong suit.