I'm up early today (before 5:00 a.m.)  ... couldn't sleep ... but overall, I'm feeling rested.  I've pretty much kept my scheduled cleared and I'm simply being who God made me to be.

There are a myriad of words that can be used to describe me, just as there are for you.  However, the most prominent words that seem to come to mind right now is the fact that I'm actively living and dying at the same time.  I am very acutely aware that in spite of the heroic efforts to extend my life, I am going to die of a disease that kills more than 40,000 people each year in the United States alone.

I will, in all likelihood, die of this disease long before an expected lifespan.  As hard as these words are to you ... I am not going to "beat" this.  

Why?  Why are people still dying?  We've had decades of pink ribbons pimped out to us with the extremely positive mantra of "Early detection saves lives!"  It's more accurate to say that "Early detection saves some lives."  Too many of those with "early detection" have their cancer return years later, only to kill them in a very short period of time.  

There's a big word in cancer land that hasn't been mentioned much over the last 50 years.  That word is METASTATIC.  Met-a-sta-tic.  This means the cancer has spread beyond where it started and has spread to distant locations.  Cancerous cells take over healthy cells and the organ dies.  People die of lung failure, liver failure, brain failure and other failures. 

How does a cancer spread?  Why does a cancer spread?  Why are metastatic cancer cells so much more difficult to kill off than primary cancer cells?  What makes a metastatic cancer cell become active again years after a primary diagnosis?

I'm a simple woman with simple questions.  I'm not a scientist.

However, I'm the one being impacted over where funding goes for cancer research.

Today is the day where the Cancer Moonshot Initiative is coming together.  I know, I know ... many of you are skeptical (including me) that this will make a difference of any kind ... but you know what?  WE HAVE TO TRY!  While it's too late for me ... I'm going to die before this initiative gets off the ground ... it's not too late for my children.

Here's the deal.  We cannot keep the research dollars in the "prevention/early detection/treat/cure" bucket.  That's not working.  We MUST have change and YOU can be a part of this change.

Due to social media and more, the metastatic cancer community is using their collective breaths and stories to emphasize the need for research for the type of cancer that kills ... metastatic disease.  And I'm talking about ALL cancers, not just the one that impacts my life.  

People always ask what they can do to help.  You can help by following this suggestions for today.

There are many cross-cancer metastatic specific items that could be transformative for metastatic cancer patients, regardless of their tumor type.
In order to have a unified voice, a bunch of us have bulleted out several issues that can help metastatic patients across most cancers. We are asking that you help us spread the word in social media and beyond to encourage people to do two things.

STEPS TO TAKE TO PARTICIPATE IN THE CANCER MOONSHOT.

1) Copy and paste the items below as a research idea in the ‘Tumor Evolution and Progression’ bucket in this link:

To do this:

a) Register at: https://cancerresearchideas.cancer.gov/a/register

b) Copy the bullets, click on this link:
https://cancerresearchideas.cancer.gov

c) Click on the 'Tumor Evolution and Progression' field,

d) Click on submit an idea

e) Add a title of your choosing

f) Add a summary of your choosing, but feel free to use: The ideas presented in this research idea are aimed better understanding and treating metastatic cancer across all types of cancer.

g) Add information to 'what is the research problem'. Add what you'd like or copy and paste: The vast majority of cancer patients die from metastatic disease. There is a dearth of funding that focuses on met research, as well as general information that could be systematically collected in order to help our understanding of metastasis

h) Copy the bullets below into the 'your proposed solution'

BULLET POINTS: 
1) Add date of metastatic diagnosis to the designated medical record set whether original diagnosis, recurrence, or progression.

2) Implement broad changes to improve clinical trial accrual and outcomes: Better access to trials, release of preclinical data that might inform patients, timely results. More access to trial drugs through compassionate care.

3) Increase metastatic specific funding and more collaboration in research through the NCI


i) Add what you'd like to 'How would your solution make a difference, or use: The ideas proposed here will help generate the data and knowledge that are needed in order to drive better therapies for people with metastatic cancer.

j) Press submit

This isn't necessarily is short little exercise ... you'll need your thinking cap for about 20 minutes.  You are welcome to look at my submission and copy it word for word, if you'd like.  https://cancerresearchideas.cancer.gov/a/ideas/author/campaign-filter/byids/campaigns/17570

But, please.  DO SOMETHING. 

We lament the violence in this world and wring our hands and post temporary profiles and shout that we need change.  People have been screaming at Congress (in the US) about the need for change. 

But when it comes to cancer, it seems people don't scream anymore.  They simply shrug and say, "I'm not a scientist, so there's not much I can do" and move on.

This is your chance!  Don't just move on!  Since the time I've been diagnosed with this disease 4.5 years ago, 180,000 people have died of metastatic breast cancer alone in the United States alone.  Metastatic cancers of all kinds?  The number is 2,250,000!!!!!

WHERE IS THE OUTRAGE?

It's now 6:00 a.m.  Four people have died this past hour due to metastatic breast cancer.  I'm going to shower and drive an hour to receive another dose of whole brain radiation.  During that hour drive there and the hour drive back, another eight people will die.   I'm going to live today.  I just don't know how many days I have left.  Please, be a part of history and be a part of change.  Help direct more research into metastatic disease.

I have completed six of ten whole brain radiation treatments at the University of California San Francisco Parnassus campus.  You can read more about the machine True Beam that is being used here.  The article even includes a picture of the room I'm in each day.

The pictures above show the outline of the external beam as it comes out of the machine and the matching outline on the side of my head.  Each treatment takes approximately only one minute per side.  It's very fast, thus preventing chances of movement during treatment causing damage to healthy tissue.

As far as side effects go, I've had both a combination of fatigue and insomnia.  My sleep patterns are all over the place.  We're starting to wean me off the steroids in order to get the patterns more at night rather than two hour snatches several times a day.

I was caught off guard by increasing weakness in my left leg rather than strengthening in the leg.  However, I was assured that this was somewhat normal and that the strength should return within a couple of weeks or so.  I am careful about going up and down stairs and I give myself plenty of time to get around.

All in all, I'm doing well.  I've cleared my schedule and I do things when they need to be done.  I'm not rushing around and that's probably good for me.

Four to go!

Today was Day 1 of whole brain radiation.  I got there right on time (in spite of traffic snafus) and pretty much fell asleep in the waiting room.  I've been going at top speed for a while and took the time to rest.

They called me back at 2:15.  Today's session took about a half hour due to continued set up, but it was painless.  In spite of the green beam, one does not see the radiation.  Some people can smell the ozone, though.

I then saw the nurse for vitals and the radiation oncologist did a quick check-in and I was finished.  In and out in 1:15.  No complaints on my part.  The remainder of my sessions will be at 7:45 each morning so that I can have my days free.

I've been feeling better than I have in ages, probably due to the steroids I'm on.  I think they have reduced inflammation throughout my body and I'm eating better.  I'm getting things done and overall, sleeping okay.  The heat makes it hard, though, but that will pass.  I do notice some anger trigger points that while I recognize the triggers, I don't necessarily know how to cope with them.  The drugs don't help that one. 

I've almost had a sense of euphoria that we have an optimistic plan in place.  When this is combined with how well I'm feeling, I literally have to remind myself that this is NOT curing the cancer.  It's still everywhere.  That can be sobering.  There's no cure for this so the roller coaster of emotions continues.  Overall, though, it's all good for now.

Actively living while conscientiously dying keeps me in a strange state of awareness of all that is around me, be it good or bad.   

Maybe that's what is meant when it's said to live in the moment. 

First things first ... this is an overwhelmingly positive and encouraging report.  There is lots of "good" news in it, but I need to remind you of perspective.  In spite of the good news and the reasonable hope we have in God working through this plan, I still have terminal breast cancer and it will kill me.  We are trying to push that date back as far as possible. 

Quick summary ... Diagnosed with breast cancer January 2012; definitively known to be metastatic (terminal) 11 months later with spread to multiple bones.  Spread to liver in May 2014.  Spread to more bones in June 2015.  Multiple treatment changes.  Spread to brain May 2016.

Now on to your basic science lesson of the day.

There are two basic kinds of brain tumors resulting from the spread of breast cancer.  One type forms within the brain and grows outward and one type grows on the outside of the brain and grows inward.  The first type is parenchymal brain metastases, PBM and the second type is leptomeningeal metastases, LM.  The disease can spread via the blood stream or the central spinal fluid.  Both are serious and both are life-threatening. 

(Important to note ... I do NOT have brain cancer.  I have breast cancer that has spread to the brain.)

Of the two, LM is considered to be the final stage of disease of a metastatic patient with poor prognosis.  There was confusion regarding the status of the tumors I have, but yesterday, we were definitively told that I have LM ... the very, scary kind.  Thus, the roller coaster ... we felt as if we were upside down, twisting and turning in the wind.  Our emotions were all over the place.

I have eight tumors on the exterior of my brain, with the largest being just under an inch. 

There are two large study reports out on the internet that indicate that I could have less than a year of life left.  However, once again (for now), I'm proving to be an exception.  Both of those studies include a large population of people whose health is quite different than mine.  While I have widespread disease throughout the rest of my body (about 75 tumors), my body is pretty much working the way it should.  I am slower than I used to be, but I am nowhere near incapacitated. 

In spite of having eight tumors on my brain, I have very limited symptoms. I have no brain bleeding, no swelling, no midline shift ... pretty much no nothing!  In fact, the only "true" symptom was my noticing something "different" about my left leg.  It's slightly weaker, harder to bear weight on it while going up and down stairs, but it's nothing in the big picture.  The team of doctors I met with yesterday repeatedly asked me about that because my being in tune with my body is what prompted this scan that discovered these tumors.  They are amazed that something so tiny popped up on my internal radar.  I do currently have some left chin numbness as well, but this is now suspected to be related to chemotherapy and not brain activity as they see absolutely nothing in the brain that could be causing such numbness.

I carried on a full medical conversation with this team yesterday.  Full comprehension and full participation.  Lots of questions and lots of clarifying answers to make sure I had things straight.  At the end of the conversation, the resident said, "I have to ask ... what is your medical background?  You have fully presented your own case study with an amazing grasp of options, treatments, terminology, prognosis, etc.  You have zero cognitive failure that I can detect at all."  I told him that I read a lot and indicated that being a professional patient will do that to you. 

I passed every neurological exam they gave.  According to the team, I have ZERO symptoms of having breast cancer in my brain.

There are many types of radiation that can be used to deal with these tumors.  Because I have so many and because they have popped up since the end of January, we are going for whole brain radiation, WBR.  This is not being used as a curative measure, but neither is it being used as a comfort measure only.  The good news of this is that WBR is being used to destroy, contain and possibly prevent future tumors.  

Once again, whose who receive WBR often have a prognosis of less than a year.  I looked the treating radiation oncologist in the eyes and asked if I was looking at my last year of life.  He echoed my medical oncologist's words:  "Absolutely not."  (Both, though, know they can't say for sure, but they're going by statistics.)

His words were, "There's no way I would even try to put a number on you right now.  You simply do not fit the models that the studies have been based on.  If you came in here and told me you were interested in stopping treatment in order to keep up quality of life, I would do everything in my power to encourage you to continue because I think you have a lot left in you and any talk of stopping treatment is very premature."

We talked further about the actual radiation itself.  I've heard nightmare stories about it.  Scary stories that I don't want happening to me.  However, we reviewed how brutal the radiation treatments to my neck were in 2013 and he said that WBR would be much easier than those.  Okay!  If that's the case, I'm no longer scared.  Those six weeks of neck treatments and recovery was really hard, but I'd do it all over again.  I'm still here and the cancer has never returned to the neck.

I will be fatigued, so that means naps when I need them.  I will lose what little hair I have left (none!) and there is a potential of that being permanent.  I absolutely don't care about that.  I may or may not have short term memory loss and/or some cognitive failure six months down the road, but it doesn't sound like the risk outweighs the benefits, so that's just sitting on the back burner of awareness.  We will monitor progress every two months or so via MRI and we will work in tandem with the medical oncologist to keep the systemic (whole body) treatments going throughout as well.  (Most chemotherapy treatments do not typically cross the blood brain barrier or the central nervous system barrier.  The one for my type of cancer that does cross has already failed; therefore, it cannot be considered for me.)

In short, I am an outstanding candidate for WBR with an optimistic outlook for success.  (Doctor's words, not mine.)

I will have the mapping and simulation appointment tomorrow (where everything is set up) and radiation will begin on Monday.  It will last for two weeks with the weekend off.

I am hopeful.  God has kept me here for this long and he has kept me reasonably well.  In spite of the ups and downs of the day yesterday (one doctor walked in while I wiped a single tear away from my eye), I slept quite well last night. 

Many thanks for all the love that has shown up in many forms.  The texts, emails, phone calls, patience and the meals on Treatment Tuesdays have been soooooo appreciated!  It's always nice to know that I don't have to cook after a 13-hour marathon day in the City.

My husband and I attended a family wedding this weekend and really enjoyed ourselves.  Many of you have seen this photo, but I like it so much, I'm sharing it again.

Last week, I had a brain MRI that revealed eight small superficial tumors on the outside of my brain.  The way the report was written, it was indicated that these tumors were consistent with cancer being in the lining of the brain, which is typically the final stage of life with cancer.  When combined with the fact that I have widespread disease throughout the rest of my body, the report, along with other research documents, made me face the reality that my time left on this earth was relatively short and could possibly be measured in weeks.  I voluntarily took myself out of driving as all documents seemed to indicate a high risk of seizure and I didn't want to hurt or kill someone if I had a seizure while driving.

You've heard me say that a visit to my oncologist is an all-day affair in that she spends time with patients as needed.  Yesterday, I was that patient ... she spent about an hour with me.  She was rather irritated with the wording of the report because there is nothing about the scans that indicates cancer in the lining of the brain.  Yes, I still have eight tumors on my brain, but I do not have cancer in the brain lining.  There's a big difference.  I

I am allowed to drive!  I was told those who have seizures due to brain tumors, typically do so when the tumors first present.  One of these tumors was slightly noticeable back in January (easier to see now on the January scan now that they know it is there) and the others have formed since then.  I was told that if I was going to have a seizure, it would have happened already.  My being able to drive makes life so much easier.

I looked my oncologist in the eye and asked, "Does this mean I'm not in the final weeks of my life?"

"Of course not!  You're not even close."

"Can I cry now?"  She handed me a box of tissue and I wept in gratitude.

The current plan is to continue my systemic chemotherapy as it's controlling the liver and bones rather well and is relatively easily tolerated.  My case goes before the Gamma Knife Review Board on Thursday (It only meets once a week.) and they will make a recommendation on the type of cranial radiotherapy best suited for me.  Radiation will probably be in the next two weeks or so.

I have mild neurological symptoms.  I have mild weakness in my left leg and I struggle to find words at times or slightly mix up sounds/syllables in words.  (For example, yesterday, I was trying to say the words, "wall flower" and it came out as "wild flower."  I caught it right away, but this happens more frequently than is normal.)  Last night, the left side of my chin went numb, as well as some increased tingling/pins/pricks feeling in the triceps of my left arm.  Radiation should eliminate these symptoms quite well.

Here I am.  Another day with another miracle.  I still have cancer ... it's still in my brain ... but as far as well can tell, it's not the end of the line.  We shall see, though.  All I know is that I'm still here today.

That's good enough for now, thanks be to God.

Apparently today is a special day ... National Cancer Survivors Day. In principle, I don't have a problem with the idea of celebrating those who have gone through a horrific disease and are currently free of disease (as far as they know.) The website for the event states: "National Cancer Survivors Day® is a CELEBRATION for those who have survived, an INSPIRATION for those recently diagnosed, a gathering of SUPPORT for families, and an OUTREACH to the community." For those who are newly diagnosed, knowing there are millions of survivors can be especially encouraging.
I have no problem celebrating my friends who are cancer free (as far as they know). What I do struggle with is that, believe it or not, I'm considered to be a survivor as well. According to the National Coalition for Cancer Survivorship, survivorship begins at diagnosis. They go on to say, "A cancer survivor is defined as anyone with a history of cancer, from the time of diagnosis, and for the remained of life, whether that is days or decades."
I struggle with that definition. I am surviving with cancer, but I will never be a survivor. Cancer will never be a part of my history. It will always be a part of my present. I will never stop treatments and I will always live with the very brutal reality that cancer is killing me. Every single day, those cancerous cells are destroying more and more of me until the day comes when they will stop my body from functioning ... and I will die.
I am not a survivor and I never will be.
I don't resent the celebration of those who are. This is what I ask of you, though ... please don't forget those of us who do not fit in that category, regardless of what well-meaning organizations say. Those gentle words, once again, are designed to inspire hope in the newly diagnosed and do not represent the reality of those living (and dying) with/of metastatic disease.
Celebrate today! However, tomorrow, speak up for those of us whose voices are being silenced. There is coming a time when I won't be able to communicate any further (and that time may be sooner than later) and I will need you to pick up my voice and continue to press on for it to be heard. Don't forget those of us who will not survive. 595,690 people are expected to die in the United States alone in 2016. Who will speak for them?
Laurie Becklund of the LA Times wrote in reference to metastic breast cancer:
"The most powerful organization in the breast cancer universe, Susan G. Komen, has raised $2.5 billion over the last 20 years, much more than many corporations will ever earn. Yet Komen channels only a fraction of those funds into research or systems to help those who are already seriously sick. Most of that money continues to go to a breast cancer “awareness” campaign that is now painfully out of date.
"We need people — patients, doctors, scientists, politicians, investors, families — to make a fresh start. We must create a new system of data collection and an open, online, broad-range database about patient histories that will provide information invaluable to those who've been given a death sentence. Patients as well as doctors must contribute." http://www.latimes.com/…/la-oe-becklund-breast-cancer-komen…
A fresh start. If you are a survivor today, please consider making a fresh start tomorrow in how to bring about change. There are too many cancers that are ignored by the public because they aren't cute, pretty, sexy and pink. There are too many cancers who don't make money for corporations; therefore, they garner little attention. There are too many cancers people don't want to talk about.
Most patients with metastatic disease of any kind are not counted in national cancer regristries. This is what Laurie Becklund was referring to when she talked about creating a new system of data collection. How can you track and treat those you don't count?
Celebrate today! Count us tomorrow and be our voice. We're dying and we need you.

Well, actually, it's all over my body, but the new stuff is in my head.

I've been having mild left leg weakness and my leg has buckled on me a few times.  My oncologist ordered a brain MRI, as well as a full spine MRI to look at possible neurological reasons for this weakness and to look at the nerves of my spine that could be causing it as well.  To be honest, I didn't want the scan ... I wanted to wait until the end of July, but my oncologist said that if there was anything happening in my brain, she wanted to be able to respond quickly to it.

We were all surprised to learn that I have eight tumors in the lining of my brain.  These are known as leptomeningeal metastases (lep mets), but are also referred to as brain mets, even though they aren't actually in the brain.

All eight of the tumors are small.  They could explain the leg weakness, as well as a few other things that I never associated as symptoms of brain mets.  I've had difficulty concentrating and excessive sleepiness, but who knows what causes what?

I have been referred to neuro-radiology for consideration for gamma knife radiation treatment.  The gamma knife is specifically designed for brain disorders.  This is what the University of California San Francisco (UCSF) medical center (where I'm being treated) has to say:

"Gamma Knife radiosurgery is a sophisticated radiation therapy technique that precisely delivers a single, finely focused, high dose of radiation to well-defined, small targets in the brain. It is especially effective for treating tumors, epilepsy, trigeminal neuralgia, and arteriovenous malformations. Since UCSF adopted the Gamma Knife in 1991, it has greatly improved the management of patients with these disorders. The procedure entails very little discomfort and patients recuperate within a few hours. UCSF Medical Center and UCSF Children's Hospital were the first Gamma Knife centers in northern California and operate today with the latest model, the Perfexion® Gamma Knife. The UCSF Gamma Knife team has over 20 years of experience with radiosurgery and has treated over 3,600 patients to date. In 2011, we acquired the Extend Frame for the Gamma Knife that enables fractionated treatments for larger lesions or those in more sensitive locations." 

Gamma Knife has minimal side effects and is a single day procedure.  It can be done while systemic (whole body) treatment is happening.  In addition to the Gamma Knife procedure, I'll most likely be switching systemic treatment to avoid new brain tumors from developing.  The options for treatments that cross the blood brain barrier (BBB) are limited.

I will most likely have a flurry of appointments next week to get things lined up.  I must admit a degree of fear ... I've always been afraid of brain mets in that I don't I really don't want to "lose my mind!"  However, all of this is beyond my control.

It reminds me of the Proverb, "Trust in the Lord with all your heart and lean not on your own understanding."  I guess that's one way of saying that I don't have to understand everything. 

As far as the rest of my body is concerned, I still have bony mets in every single vertabra (some with more than one tumor) with lots of bone marrow replacement with disease in the lower spine, tumors in both sides of my hip, a tumor in my left hip socket, a tumor at the top of my right femur, tumors in several ribs, in my sternum, in my right shoulder blade, at the top of my skull and over 30 tumors in my liver.  I have over 75 breast cancer tumors in my body.  (Remember, I do not have bone cancer.  I do not have liver cancer and I do not have brain cancer.  I have metastatic breast cancer.)

As one friend said, it's hard to explain how and why I'm doing as well as I'm doing.  Quite frankly, when one reads the reports, it very obvious that I'm quite sick.  However, I'm not in pain and I'm still known as the "energizer bunny."  I'm very grateful.  I get to live each day and if not completely with joy, than at least with gratitude.

As always, thank you for your love and support.  This isn't over ... just a new chapter in the life of a metastatic breast cancer patient.