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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.

Book Signing!

It's been so fun hearing reviews from people who've read my book! This was kind of like my 4th child, therapy, and a huge Bucket List accomplishment! I'm so grateful people are liking it. In fact, Amazon seems to have run out of current stock!!!! (It's now saying they will be able to ship again in 1-2 months. I'm taking that as a good sign of people having purchased the books!!!)

The other morning, I went to my co-author's home to sit and sign the books we have in stock, ready for purchase! It's a surreal thing, on one hand, that this accomplishment has actually happened, especially in how it all came to be in such a relatively SHORT time.

I love that people are loving my "baby."

For those who'd like a copy, here are the links:
(You can still get the Kindle version on Amazon, and I'm assuming the real book will be back in stock soon!)

AMAZON

BARNES & NOBLE

Happy Reading!!!

SLEEP!!!!

Hello, XANAX, my old friend.

I've come back to taking you again.

Finally tired of creeping

while everyone else was sleeping,

And the vision that was planted in my brain

Still remains

Within the sound of silence.

It's not a huge surprise that I have NOT been sleeping well for the entire month. Between being truly sick and waking up for meds/restroom/sickness, then the stress and worry, the side effects of steroids, then the habit of my early mornings of accomplishing so much, I finally talked to Dr. Fleener yesterday about enough being enough. Sleep is essential. I needed to get back on track.

Since XANAX helped before, we decided to try it again.

For the first time in almost 4 weeks, I SLEPT THROUGH THE NIGHT LAST NIGHT!!!!!

I feel so ready to take on the day.

Better living through modern science!!!!

MRI Findings---For the Record

I kept meaning to put up the exact findings from my MRI results, for those who are interested in the science-y part of all of it, plus just for the documentation of it.

Date: 2/03/17

FINDINGS:

The diffusion-weighted imagine demonstrates no evidence for acute infarction. The axial gradient school imaging demonstrations no evidence for intracranial hemorrhage.

There are scattered opacified mastoid air cells on the right Paranasal sinuses/mastoid air cells are otherwise unremarkable.

There are numerous enhancing intra-axial lesions throughout bilateral cerebellar hemispheres, as well as scattered throughout the supratentorial brain bilaterally, left greater than right. Posterior fossa intra-axial lesions include a cluster of three lesions in the vermis, each measuring up to 7-8 mm. Within the superior aspect of the left cerebellar hemisphere, there is a mass measuring 2.5 cm in transverse dimension and there re numbers confluent masses within the interior and posterior aspect of bilateral cerebellar hemispheres, left great than right, measuring up to 6.0 x 3.1 cm on there left and up to 2.9 x 1.6 cm on the right. There is associated edema as evidenced by increased T2 and FLAIR signal adjacent to these lesions, especially on the left. This exerts significant mass effect on the fourth ventricle, which is markedly narrowed. There is no transependymal flow of CSF or evidence for vertriculomegaly at this time.

In addition to the metastatic disease within the posterior fossil, there are supratentorial enhancing lesions. This includes a left lateral temporal lobe lesion measuring 1.1 cm, an inferour and lateral left frontal lobe lesion measuring 1.7 can, and a posterolateral left frontal lesion near the vertex measuring up to 1.4 cm. On the right, there is a lesion within the lateral aspect of the temporal lobe measuring 1.6 cm.

There is a lesion within the left occipital lobe measuring 1.1 cam and there is a lesion without the right occipital lobe measuring 1.7 cm. There is also a posteromedial right parietooccipital lesion meaning 1.3 cm.

There is mottled abnormal signal intensity throughout the calvarium including the cloves. There is also mottled abnormal signal intensity within the upper cervical spine, suspicious for osseous metastatic disease. (*Dr. Fleener not concerned about this part for now.)

IMPRESSION:
Widespread intra-axial metastatic disease, including supratentorial and infratentorial lesions. Numberer cerebellar lesions are present with associated posterior fossa edema and mass effect on the fourth ventricle. Signal abnormalities within the osseous striations suggests osseous metastatic disease as well.

THERE YOU HAVE IT!!!!

H&P #19 + Leave it to Fleener

We are back on regularly scheduled appointments with Dr. Fleener and for the once every 3 weeks treatment of Herceptin and Perjeta.

Before my treatment today, I met with Dr. Fleener, who is still optimistic that radiation will melt and shrink the tumors from my brain and put me back in a state of remission. "I don't want to blow smoke at you, but I have that hope, one, because I choose to, and also because so far your cancer has been so sensitive to treatment, that it makes sense that would continue. Plus, you responded so well with your symptoms, so quickly, that gives me great hope, too."

Now, we go back to treating the rest of my body and hoping that I'll be back on the longer end of the time frame.

She told me that she and Dr. Goble presented my case at a conference, along with another one from the area, and that she has also been researching alternative options for future treatment, plus clinical studies. There is an option to have a port in my head and treat the brain directly with Herceptin. Dr. Fleener feels that my having HER2+ can be a good thing, in this case, because these drugs have done so well at keep cancer out in the rest of my body. "Before these drugs, we were having patients die of lung or liver metastasis, but now that H&P have done such wonders on patients, they are seeing more of the cancer show up in the brain, which stimulates studies and clinical trials."

She also wanted to tell me that she's seen my name all around town and how great this community is for rallying around families like mine.

Finally, I asked about my MRI results, which included a small blip about modeling on the cervical spine, which is suspicious for bone mets, but Dr. Fleener thinks it was residual. "Plus, the radiation most likely got that, as the upper spine is within the treatment area.

In leaving, she reminded me how much her staff has been thinking about me, praying for me, and loves that I'm doing better. "I was SO glad and relieved when Dr. Goble told me how much better your symptoms are and how much better you're feeling. That, alone, shows that radiation has worked on some levels. That's in part because of you and your strength, so keep it up!"

As I continue to walk this journey, there are still the pulls to ask, "WHY?" Instead of dwelling on that, I'm one to just ask, "What I can do now?" And, I do something each day to make memories or set up plans--just in case---something happens again quickly. I don't know if I'm meant to become a miracle or simply just to press forward in faith and inspire others to endure their own trials with a happy heart and unbreakable faith.

I came across this quote a few days ago, which may have been an answer to prayers.