H&P#21

It's been a rough week.

What was supposed to be a leisurely weekend in San Antonio turned into me unable to walk or talk or remember anything----an emergency ride back to College Station and a following hospital stay.  I had aseptic meningitis, which caused encephalitis, and I basically skipped over three days of my life.  I cannot remember much of Friday through Monday.  It was scary and a terrible 40th birthday for Stephen.  I was released yesterday, and I'm back at treatment today.
The good news is all the tests showed that my brain lesions have shrunk even further and everything else seems to be well.  I'm just super tired and weak from being in bed for so long and am trying to take it slow.  This whole thing also solidified what an amazing husband I have, how much he loves me, that my boys have been trained well, and that my in-laws are priceless, going above and beyond. We are only making it work between their help and service from friends.

Lately, I won't deny that I have asked, "Why?" quite a bit.  What else do I need to endure to learn what I need to learn?  What more? My family needs me! I want to be here for them and with them!

I found this small answer in scripture:

Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you:
But rejoice, inasmuch as ye are partakers of Christ?s sufferings; that, when his glory shall be revealed, ye may be glad also with exceeding joy. (1 Peter 4:12-13)

First, I know I am God's "Beloved."  He knows me and loves me.

Next, trials are not unusual; we all have them, and they will help prove that we are on Christ's side and seeking to learn the things He would have us learn.

Who knows how much more I'll be called to endure, but for now, I'm hoping to endure it well.  (Minus that little episode when I didn't know what I was saying and yelled at my kids, "I WANNA EAT MAXO!  I WANNA EAT MAXO!!!  Maxo was Grandma's dog, and apparently I was trying to say I wanted Mexican food for dinner!  I'm sure we'll laugh about that for years to come!)

For now, I'm back in remission!

And, Mexican food doesn't sound too bad!

Goble This Cancer

I had my follow-up appointment with Dr. Goble today, to go over the MRI results and put a plan in place going forward.  Stephen was able to go with me, too!

He walked into the room with a smile and asked if we had seen the MRI.  Since we hadn't, he invited us to his office to have a comparison.  

"As you can see, it is markedly improved!  There are only a few tiny spots, and who knows? If we wait a few more months, they might go away, as the radiation could still have some effect."  

Back in the office, he asked me about all other symptoms, checked my strength, breathing, reflexes, etc.  Things look pretty good.  I have swelling and a fat, round face from the steroids, but I'm off them now.  

Moving forward, we will schedule an MRI every 3 months.  My cancer is like a weed....really aggressive and grows quickly, but it dies back easily when treated.  If there happen to be a few spots that start to grow back, there might be possible radio-surgical options, where Dr. G and a neurosurgeon would work together to tackle those spots.  Also, if the whole-brain scan happens to keep the cancer at bay for over a year or more before it comes back, we might look at whole-brain again.  "There have been occasions where whole brain radiation is repeated, but we need to know that it will have a durable response."

Dr. G hesitates to give me any kind of time frame.  He doesn't think I'm still on the 6-12 months, but he can't promise 10 years, either.  We are just taking one day at a time---really 3 months at a time by his monitoring.  

3 weeks at a time at Dr. Fleener's office.  Scanned every 3 months.  I can live season-to-season.  Just the fact that I feel like I can LIVE is enough for this week!!

 

MRI + Leave it to Fleener

Today was a big day.  A BIG day.....one we've been waiting on since I finished my whole-brain radiation.  

Today was MRI day....the follow-up MRI, which would should IF and how well the treatment worked to get me back to the land of the living, to extend my life span from the 6-12 month timeline and closer to the remission track.  

The MRI went smoothly.  No problems with needles or machines or time frame.  It was easy in, easy out.  

Then, I got to have lunch with Stephen, since he was off early!!  This also meant he could go to my appointment with Dr. Fleener!

We already had the phone call about GREAT PET results, but we got the official report:

"No abnormal areas of tracer localization are seen in the neck, chest, abdomen, pelvis, or the skeleton.  No hypermetabolic cervical, axillary, intrathroacic, abdominal, or pelvic lymph nodes, liver, adrenal, or skeletal lesions are seen.  

NO EVIDENCE OF FDG AVID METASTATIC DISEASE.  STABLE EXAM SINCE 1/31/17!!!!!"

Dr. Fleener also was able to call and bet the reports EARLY from my MRI!!!!  There's no official report or images yet, but........

SHE CAME INTO THE ROOM WITH A SMILE AND A HAPPY DANCE!!!!!!  

The radiologist said that the tumors have decreased so much that he "had to squint to see any evidence."  

She knew it was improved.  She wanted to know a number---HOW MUCH HAVE THEY IMPROVED???

"99%"

Let me repeat that.....NINETY-NINE PERCENT!!!!!  

Like, there really is no other result that could have been better!!  The tumors have almost been erased from existence!!!

The tumors in my brain are basically battled back.  My symptoms are under control.  There is no evidence of disease anywhere else in my body.  

MIRACLES ARE STILL HAPPENING.  

Our plan moving forward:

Dr. Fleener feels like we should do something.  She's not sure how much will change or if doing a little something will make a huge difference, but she feels better doing something rather than nothing.  

So, we are going to go forward with the hormone (estrogen) therapy drug, Zoladex, which is a shot I'll receive every 4 weeks.  It will cause me to move into menopause with possible side effects: hot flashes, insomnia, feeling achey, lower sex drive, vaginal, and emotional changes.  There is no guarantee that this will prevent cancer from coming back, BUT---if there's a chance that some of my tumors might be fed by estrogen, it's worth a shot.  (ha!)

I'll also start receiving Zometa, a bone-building agent, with my regular maintenance drugs, which will help prevent osteoporosis.  

THERE WERE NO TEARS TODAY!!!  We were all smiles!!!  It's a little hard to believe that we actually have the miracle we've all been praying for.  Who knows how long it will last, but we are soaking it all in.  

From here, we will continue to scan every 4 months, or so.  There is always the looming cloud that cancer will come back, but we don't know where.  However, I have the best people watching me and constantly on the battle front.  

Today was a good day.  

PET scan

Happy April Fool's to me......PET scan time.

Dr. Fleener ordered another PET to go along with my MRI for next week, just to rule out cancer anywhere else in my body.....since I had that first MRI AFTER my regularly scheduled PET.  This will help us know where to go from here, after the results from the MRI come in.

Of course on this April Fool's Day, Stephen has a class, all three boys have soccer games, and my PET was set for the same time.  Thanks to a co-worker whose son is on Kyle's team for taking him, a friend for taking the others, and me for having the first scan of the day to get done early enough to be finished before the first soccer game was over!

Also, there were no hassles with the needle needed to inject me with radioactive material!!!

Easiest scan yet!

Now, let's hope for good results and a path forward that includes LOTs of time!

Leave it to Fleener

At 9:30 last night, Stephen's generic cell phone ring went off.
"Oh, great.  That's the worst ring tone because I never know what I'm going to get."

Dr. Fleener was calling us, apologizing for the lateness, but sounding excited about something.

At my treatment earlier in the day, I dropped of her signed copy of my book and she had been reading  ahead, to the point in my treatment when I switched over to her practice.  Reading on, she commented on cancer coming back so quickly after that and me lamenting, "I did everything I was supposed to do!  I even took Tamoxifen when I didn't really want to!"

At that point, Dr. F's mind started zooming back to the pathology reports from the biopsy of that returned cancer.  She looked up in my charts and realized that they didn't have those reports, for some reason, which is why she called.  Did I have them?  NO.

She couldn't remember the percentages of estrogen in the mix, but started wondering if it would be worth it to add some hormonal treatment to what we're currently doing.

She would contact Dr. Naqvi the next day and get back to me.


That she did!  Dr. Fleener was able to get the reports and actually wanted me to come in for an appointment this afternoon.


So.....my estrogen is 30% and HER2 is still high.  All of this makes sense, as I'm still in a remissive state in the rest of my body, and HER2 skipped past what doesn't treat pass the blood-brain barrier.  If cancer would've returned in my liver or lungs, instead of the brain, Dr. F. would've biopsed the cancer to make sure the percentages were the same, but it's difficult in the brain.  She can only guess that it's the same pathology as before.

On one hand, it makes sense not to make any changes to my treatment plan, as I wasn't treating anything hormonally and it still came back in the brain PLUS, it's ONLY in the brain and not anywhere else.  However, she said she's thinking about my case A LOT, and coming up with plans to add, if that's the course I choose.

(Side note:  There is another patient of hers with a very similar story.  We have both given Dr. F. permission to share info with each other.  This patient hasn't had full brain radiation, only partial, as her brain tumors are more localized and she could have surgery as well.  In the last few months, there has been growth in her brain.  She has been to both the Mayo Clinic as well as MD Anderson.  AND>.........drum roll........they BOTH gave second opinions that Dr. Fleener's suggestions would be exactly the treatment they would follow.  This for me is HUGE!!!  I basically have a second-hand second/third opinion, without having to make a trip!)


Here's the list of things on the docket so far:
Estrogen treatment: I can receive a shot mostly/once every three months which would shut down my ovaries and stop estrogen.  Then, I would take a stronger pill, too.  This would cause me to go into menopause, which is something to consider, as I'm still young and might not want to go through that yet.  We would also need to remove my IUD, which potentially could present some problems.  Also, if the no estrogen symptoms are too much to handle, we would simply stop the shots/pills and my body would go back to "normal."  Another thing to consider is that there is not a lot of info on the interaction between this shot/pill and Perjeta---only with Herceptin. I'd be a little bit of a guinea pig!

There are also 2 types of chemo being used in cases like mine which DO pass through the blood brain barrier.  Dr. Fleener isn't talking about doing that anytime soon, she just brought it up as something potentially on the horizon, should cancer decide to come back quickly.

Finally, she reviewed the idea of placing a small port in my brain to directly administer Herceptin straight inside.



Here's where we go from here:

I'm doing another PET scan on April 1.  Insurance sometimes doesn't approve one so soon, but because I had my "normal" PET a week BEFORE finding cancer back in my brain, she could justify another one, just to make sure the rest of my body is still clear.
Then, I have my MRI on April 5.  I'll meet with Fleener on the 5th to review the PET ("Or, I can just call you if you can't come in!") and I'll meet with Goble on the 7th to review the MRI.
After that, we'll go over options and decide about the hormonal therapy.

Dr. Fleener stressed that she doesn't want to blow false hope around or even heavily suggest that we need to change our treatment at this point.  She just thinks about my case a lot---maybe because of my book and the fundraiser event and seeing my name all around.


To think, just having her read my book got this excitement going!!!!


Once again, I know I'm in good hands with Fleener.  We keep putting one foot in front of the other and who knows how far we'll go!

H&P #20

 I'm back in the saddle again!  Another round of the drugs that have been keeping cancer at bay until one or two cells squeaked past the goalie into my head.  Things have been going well after I finished radiation:  no headaches, no nausea, no dizziness.  I feel almost like myself again.  Part of the difficulty in the last few weeks has come from dealing with a terrible cough, ear infection, and upper respiratory junk.  A Zpack didn't help, so I had to go back for stronger antibiotics and cough meds, and I think we are FINALLY over the worst of it.  The cough lingers, but they tend to do that.  If I push things too hard or am up on my feet too much, I get really tired, and sometimes my body feels slow and heavy.  However, I will take the vast improvement in all areas of my life.  I feel a million times better than before radiation.

Right now I still get questions about what's next or if there's any news.  And, right now, unfortunately, we are in the waiting place---waiting until the next MRI.  We don't know anything until we see the evidence in scan, but I know that there has been healing, simply from my symptoms decreasing, improving.   I also know much of that is blessings and answers to prayers from all my many prayer warriors, those I know as well as countless strangers who simply want to send their love and faith my way.

It can become frustrating to stay in the waiting stage, not knowing, but hoping that things are improving and that there is more time than we were given at the beginning.  Instead of fear and grief, I've decided to simply keep on keeping on.  One day at a time, living purposefully and joyfully, can help me celebrate and honor the gift of life.  We no longer have the luxury of wasting days away, but cancer can become a great motivator to get things done.  As a quote from Beaches, one of my favorite movies, reminds me, "You're not dead yet: so stop living as if you are!"  I chose to live in the joy!

We take it day to day, keeping on fighting and praying for healing.  And, there are SO many areas where healing is needed.  Physical, emotional, spiritual---each requires time to work its way out and return to a healthy balance.

I came across this quote today:

It speaks to my love of the ocean, which is steady and constant, but can also rise up and become unpredictable.  Healing is a bit like that.  My story has been one of hope and fight, going above and beyond in treatments, only to have cancer crash back at me again and again, much earlier than I was "promised."  However, taking a day at a time to focus on staying healthy and in healing more than just the cancer cells in my body has helped me see the good, to have a positive perspective on these terrible chapters that have taken over my life story.  That outlook each day helps with the healing.  

 Cancer Kicks (in honor of spring!!)

My hair is in what I call "the Gollum".  When I first saved the mohawk, it was pretty cool.  

Now, it's almost all gone and the tiny, side hairs are coming out, too.  Time will tell if it will grow back.  I'm a living science experiment!!!

Until next time!!!

Dance in the Rain Benefit

Last night, the Sprit of Aggieland was on full force!  Amazing people in this community came together to support our little family, and we were BLOWN AWAY and humbled.  

The same local restaurant owner, Wade Beckman, who sponsored a fund raiser for us back in October at his sister restaurant, was involved in planning this night, and it all came together through the love and support of some of Stephen's co-workers who happened to be out to eat and chatting with him one night.  They were brainstorming how to help and wanting to be a part of something, and Wade offered his restaurant.  Numerous silent auction items came in, t-shirts were designed, tickets were sold, and people came and came and came. 

Dr. Fleener was there.  Countless co-workers were there.  We were in awe of the support our little story could mean to people!  It was touching, and we felt so loved.  The doctors even told the story about a big meeting at the hospital, scheduled for the same time as the event.  That wouldn't do, so they insisted it be moved up.  As 5:30 approached, many were on their phones, urging the meeting to wrap up.  By 5:45, almost everyone was ready.   Dr. Fleener told me, "they were all talking about this 'CRNA event' they needed to attend, and I kept thinking, 'is this Melodee's event because that's where I need to be!'" This BIG-little town never ceases to amaze me.

There was another BIG surprise of the night for me.  I NEVER get surprised.  Not because I don't love it, but because someone always seems to accidentally drop a little hint, and that little hint is usually enough for me to figure everything out.  

Not yesterday.  

As I was about to start getting ready for the event last night, my doorbell rang.  Kyle ran to answer it, and I thought I heard Grama Sue's voice.  And then I SAW Grama Sue.  AND MICHELE!!!  

These two amazing ladies surprised me by flying in from Midland for the night to be a part of my event.  Happy birthday to Grama Sue and happy happy day to Michele!  Love these two so much!!!

We had some book sales at the night, and I got to personalize a few.  

And, on top of all the happy feelings and fun times with friends, co-workers, community members, family, and fellow survivors, we raised money.  Over $16,000.  I. am. in. shock.  

Nobody thought it was funny when I said, "Well, that should cover my funeral costs." (never one to shy away from the dark humor, after all.)  They were much happier when I said, "OR....and DISNEY CRUISE!!!"

Stephen was also excited about his raffle win--another gift--a YETI COOLER!!!  

(I was gifted a facial, a gorgeous frame, & Kendra Scott earrings!)

There are really no other words to say but Thank you.  Thank you to all who planned, participated, came to support us, and made this one of the best night's of the year!!!  Love to all.