H&P #23

This one hit me hard.  Whether in a combination of overdoing it over the holiday weekend, poor food choices, or just "fun" side effects from the meds, it was a hard day.  I was supposed to have a conference call and was so knocked out I slept through my alarm!!!

It really isn't easy to NEVER be done with all of this.  Demoralizing, actually.  No end in sight, and my body slowly breaks down.  It's like Russian Roulette, waiting and guessing when/where/if cancer will return and how badly.  I try to stay positive and "keep fighting," but this 4-year-long war has already taken its toll--on me, on my family, on those who have given their time and talents to help us.    But, what am I going to do?  Give up?  Not a chance!  So, forward we march, onward, ever onward!

I'm reminded of the words to this hymn:

Called to serve Him, heav'nly King of glory,

Chosen e'er to witness for his name,

Far and wide we tell the Father's story,

Far and wide his love proclaim.

Called to know the richness of his blessing--

Sons and daughters, children of a King--

Glad of heart, his holy name confessing,

Praises unto him we bring.

Chorus

Onward, ever onward, as we glory in his name;

Onward, ever onward, as we glory in his name;

Forward, pressing forward, as a triumph song we sing.

God our strength will be; press forward ever,

Called to serve our King.

Words: Grace Gordon, alt.

Music: Adam Geibel, 1855-1933

Throughout this journey, I've had a few experiences that have led me to believe that there is purpose in trial, that it's important to trust God and serve Him, in good times and bad.  I have been chosen to be a witness of miracles, so I can testify of God's glory.  At times, it seems He could make his point in much simpler ways, but perhaps there are specific individuals who need to hear my experiences in order to find faith for their own trials.  As long as there is something I can do to press forward, being Called to Serve, I will.

I wasn't in much of a butt-kicking mood, so the slippers felt more appropriate.  

H&P #22

I'm back to my normal chemo schedule.

It's actually been a weirdly eventful 3 weeks in between the last treatment.  Believe it or not, that time frame involved ANOTHER MRI to investigate the suspicion of.....you guessed it....MORE CANCER!!!!

This time, it was my knee that gave cause for concern.  The last Thursday in April, I woke up, got out of bed, and felt pain in my left knee (the one which had surgery last October), and collapsed under my own weight.  I couldn't really think of a logically reason for this "injury."  Thankfully, I still had a brace to wrap around my knee as well as my crutches from the surgery.

Stephen was more concerned about this being more than a simple injury.  He was at work, but he happens to work AT A HOSPITAL.  He found Dr. V, my orthopedic surgeon, and explained what was going to.  The doctor wanted me to call his nurse and get a Monday appointment, even though he was "booked."

Over the weekend, the pain got better, and the leg got stronger.  Even so, Stephen insisted I make the appointment.  When we talked with Dr. V, he seems a little perplexed about my symptoms vs. my pain, description of the injury.  We did an x-ray, and there showed a tibia fracture, but, more concerning, what looked like......you guessed it.....CANCER.

We scheduled an MRI the next day.

Dr. V called on Wednesday with results:  Thankfully, it's not cancer.  It is, however kind of serious.  You had bone infarction, which had caused that are of your bones to not receive blood supply and die.   That part of bone will never grow back, so you just have to strengthen around it.  But, you have to take it easy for 3 months, maybe as long as 6.  No exercising on it, and take it easy.


Well, that was a weird--and actually quite rare--thing to happen.  It's not cancer, so I'll keep being thankful for the little things.  And, I am determined to take it easy, for if I don't, I'll need a total knee replacement.  Leave it to me to injure myself in weird ways!!!

There have been several times in the last few weeks when I have felt alone.  Whether physically alone or feeling emotionally empty and without hope.  I've asked "why?" I keep having all these extra problems, "why?" I have to go through any of this?, or "how long" is this going to keep plaguing our lives?  

As long as I let myself become weighted down by that line of thinking, I need to turn to scriptures like these: 

When we try to take courage in trials, the Lord will do so much more to make up the difference.  He will strengthen our hearts, helping our hope.  He will hold us by the hand and help us.  He will be on our right and left sides, with his Spirit in our hearts, sending angels to bear us up.  We can do hard things because we are never alone!  We are getting strength from God.  Sometimes, all we can give is courage and hope, and God will do the rest.  And, there are times when our hope and prayers for this life are not answered in the way we want, but we can continue to hold tightly to the hope and courage in the Lord to seek for the hope of the next life.  For He will always be in our hearts, as long as we let Him in.  

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!