I had a marathon week of scans and testing last week.  My white cell count was too low for chemo on Tuesday, so it was put off til Thursday.  My other blood work is holding its own.  No tumor marker test for another two weeks.

I had a CT scan on Tuesday.  I get copies of my scans as soon as they are done and I can recognize tumors in my liver.  I have quite a few more than my last scan in September.  Not surprised.  We knew the treatments I've been getting haven't been working. 

After chemo on Thursday, I got a bone scan.  Yes, it's very obvious to me that I have an increased number of tumors in my lower back and in my ribs.  It's not so easy for me to read the rest of the bone scan.

I had a brain and full spine MRI on Friday.  I have increased pain in my spine (every vertebra has tumors) and I have constant headaches.  I didn't pick up copies of the MRIs as it was too late for them to be burned and besides, I have no experience in looking at a brain MRI since this is my first one.  No sense scaring myself to pieces.

And now I have to wait.  My follow-up appointment is Wednesday.  I imagine if something awful showed up that I would receive a call before then to keep me from driving.  I hate the thought of losing my driving and if that is necessary, our entire family will have to make some serious changes.  I not only drive my children around, I also drive my mother-in-law around. 

The main purpose of these scans is to give us a baseline for the new treatment.  Another purpose is to see if there is any tumor that could be targeted with radiation to reduce pain.  I am now on narcotics at night, which do help quite a bit in the pain management department as it allows me to sleep well.

My hair has started to fall out.  It's not quite like the photo ... that's from four years ago when I lost my hair the first time, but the fall is beginning.  I'm hoping it sticks around for another couple of weeks.  While I've always said that "it's only hair," I do like having it.

Scan, treat, wait, repeat.  Sigh.

I first "met" Paul Kalanithi two years ago today when his essay, "How Long Have I Got Left?" appeared in the NY Times on January 24, 2014.  It struck a chord with me, as it did with thousands of readers around the globe.

Two paragraphs stuck with me in that essay:

Dr. Kalanithi lived in my backyard, Chief Resident of Neurosurgery at the world famous Stanford Hospital.  I followed his story as best I could, enamored with his writing and with his approach to living with a terminal diagnosis.  He published two more essays, the second of which was in the Stanford Medicine Magazine in Spring 2015.  By this time, he and his wife, Lucy, had had a daughter.  Entitled, "Before I Go," Dr. Kalanithi poignantly captures the essence of time for the dying:

Paul Kalanithi died March 9, 2015, shortly after his "Before I Go" essay was published.  He was working on his book, "When Breath Becomes Air" up to his death and his wife wrote the final chapter.  This book is the first book I have ever preordered prior to publication. 

It's a short book, both easy to read, yet hard to finish because you know what's coming.  There was a particular paragraph in the book that made me exclaim, "Yes!  Exactly that!" as he put into words something that has been puzzling me about myself.

Not only have I heard of most of the pieces he mentions above, I have read many of them.  Additionally, I have a personal library on death and dying.  I've read countless books on death and dying that I've checked out from the library.  I've always known I didn't read those books from a sense of morbidity, but for something else and Dr. Kalanithi expressed what I've been hard pressed to express for myself.

As he so aptly wrote, I'm searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and I need words to go forward.  I will forever be grateful for these words that have opened a world of understanding for me. 

Dr. Kalanithi's wife, a medical doctor herself, closes the book with this:

Deep down, I think that's what we are all looking for ... purpose and meaning in our every day lives.  Living with a terminal diagnosis casts a shadow over what that purpose may be ... especially if the purpose seems to shift and change each and every day. 

Dying teaches me about the importance of life.  It challenges me in ways that I never imagined.  I do not like the process of dying ... I do like the process of living ... and I wish to be fully alive even though I am outwardly decaying.  Encouragement to embrace the life within is important to me.  I really don't want to hear about overcoming cancer or beating cancer, because beyond a divine intervention, that just isn't going to happen.  However, I do not want my dying to get in the way of my living a life of love.  I wish to be satisfied with today's joy, not always longing for more and more.

My words are inadequate and I fear they sound sappy.  So I'll stop now and trust that you understand what my heart is trying to say.

I attended the first conference of its kind this past weekend ... the American Society of Clinical Oncology (ASCO)'s Cancer Survivorship Symposium.  This meeting was a collaboration between oncologists and primary care physicians in addressing the myriad of needs of a cancer survivor.  There were close to 1,000 people attending the conference, the bulk being in the medical profession.

I've been asked ... why would you attend such a meeting?  You are not a "survivor."  You are going to die of this disease.

To be honest, I've long struggled with the use of the word "survivor" as it does indicate that an event that is survived is in the past.  Many with cancer also struggle with the word as well.  As an teacher of English as a second/foreign language, I wonder about how much time should be spent on the semantics of the concept, but then my tired brain pulled an Elsa and I just "let it go."

The National Coalition for Cancer Survivorship (NCCS) defines a cancer survivor as anyone with a history of cancer, from the time of diagnosis and for the remainder of life, whether that is days or decades."  This is the definition that was used throughout the conference. 

There is much talk in the metastatic breast cancer community to push metastatic breast cancer into the "chronic disease" classification.  Once again, I have struggled with that concept, but after this conference, I better understand what that means.

If metastatic breast cancer is to be considered a chronic condition, then, just as it's important to understand the impact that a primary cancer has on someone for the rest of their lives, it is also important to understand the myriad of conditions that accompany a metastatic diagnosis.

Emphasis was made on how other conditions already classified as chronic have the appropriate follow-up care plans in place and that re-invention wasn't necessary, but that using those conditions as models would expedite the process.  The general consensus is that every cancer patient should receive a Cancer Survivorship Plan upon completion of their treatment and that this plan should not be dependent upon the patient pulling it together.

Two of the saddest statements made at the conference were:

"Early detection of recurrence does not make sense when no effective therapy is available." and "Not everyone in this country can afford to have cancer."

These are volatile statements.  I understand the premise of not testing for recurring disease when there are no symptoms, but if a disease can be controlled for a longer period of time using less toxic therapies, then the earlier that recurrent disease can be found seems better.  Doctors feel challenged to know what type of follow-up is needed, especially for those survivors of childhood cancers.  The general consensus was that scans or blood tumor markers should not be used unless the patient presents with symptoms

This question came up over and over ... who is going to pay for all this followup needed for a cancer patient?  There was never a satisfactory answer from anyone.

EVERYONE wants better follow-up and care.  However, given the current condition of health care provision in the United States, this can be difficult to finance.  It's not enough to have a moonshot cure for cancer if there isn't an infrastructure in place to support all those cured people.  The "cure" can come with a high cost at the physical, psychological and financial levels.

There were many talks and presentation on the value of physical movement and proper nutrition for risk reduction.  Those who called these two "whole patient" approaches as preventive measures were consistently challenged.  Risk reduction is not the same thing as prevention and risk reduction is not a guarantee.

I was able to ask questions in two of the sessions, thus getting metastatic disease into the discussion.  While metastatic disease was not the focus of this symposium, it is important that if we are going to push metastatic disease into the chronic category, then the needs and concerns of metastatic patients need to be addressed as well.  

Both of my questions were well received and applauded.  My first question was regarding the use of "risk reduction vs prevention" and the presenting doctor apologized and corrected her terminology.  My second question was more of a comment in the need for more effective treatments that didn't cause such devastating side effects, whether immediate of late-term in treating cancer.  I said that we should not accept it as "normal" that someone who survived a childhood cancer should not have to deal with the aftermath of the disease and treatment decades later.

One of the most appalling things that happened, though, was when a PhD (and co-author of a best selling nutrition book) gave me three referrals to alternative practitioners to handle my metastatic disease.  She even used the term "cure your disease" when talking about one of them because he cured someone else's Stage III disease.  I told her that there was no cure for metastatic disease and that anyone who claimed such a thing was a fraud.  She corrected herself and talked about his helping me live a long time with the disease.

Sigh.  I accepted the three names and I immediately looked them up.  I'm always wanting to know who is following whom and why.

This is what is appalling.  One of her referrals was arrested in July 2015 for practicing without a license, giving expired medications and giving a bag of dirt as a treatment protocol for a woman with metastatic breast cancer.  There are no records of his having any education of any kind beyond high school, yet he is touting himself as a chemist and doctor ... and as the one who has the cure for cancer.

If you are going to take the time to seek someone out to give a referral, it would be good to know everything about that referral and whether or not you want your name to be associated with that referral.  Needless to say, I'm not interested in any of the referrals.  I am not interested in anything she has to say.  She has lost all credibility with me. 

I am interested in evidenced based protocol, not woo-woo wishful thinking. 

I learned a lot.  I'm still processing.  I have a long way to go.  I networked like crazy, gained access to a lot of resources, talked to a lot of people involved in both advocacy and research and I came home absolutely exhausted. 

There's so much we know, yet so much we don't know.

I've been going to my treatment center in San Francisco since July 2012.  (Treatment prior to that was in Hong Kong.)  There's a lot of turnover in the oncology department when it comes to nurse practitioners (They rotate to different positions in a number of locations throughout San Francisco), but the support nurses and infusion nurses remain fairly constant.

Same goes for the phlebotomists.  The same three women have been drawing my blood for these three plus years and they not only know my name, they know my children's names and my husband's name.  I know their names and their children's names.  We are genuinely interested in each others' lives.

However, they hate drawing my blood.  Sometimes, it can be easy, but other times, it's quite difficult.  Even though I now have a port, it's much quicker for me to get a venipuncture draw in the lab for quicker processing of the blood rather than going to the infusion center, accessing the port, waiting for results, etc.

Tatiana and Betty tried four times today and Tatiana was in tears.  She kept apologizing and said, "If we don't get this on the next try, we're going to have to send you upstairs."  I reassured them that it was all good and that I understood it wasn't their fault.  They were able to access the next time and the processing began.

Before that, though, Tatiana noticed how pale I was.  I told her I was getting a transfusion today and that I was very tired.  Tatiana, originally from the Ukraine, told me that when she felt tired, she ate caviar and that it never failed to give her energy.

In spite of working in a medical setting, she wants an easy fix for me.  She has seen me do well most of the time she's known me and I know she forgets that I'm not coming in for maintenance checks, but for treatment.  She genuinely cares for me.

The cashier in the cafeteria cares for me, too.  While I don't know her name (and she doesn't know mine), we do talk each time I buy my Coke Zero there.  She may think I work at the clinic and may not know I'm a patient.  When we exchanged greetings and in response to the "How are you, today?" question, I replied, "I've had better days."

"Oh, I'm sorry to hear that.  You really need to be positive.  If you focus only on how you are feeling sick, you will never get better and you will remain sick."

I could get frustrated over these comments.  Caviar and thinking positive has zero impact on anemia and cancer, but you know what? I understood what was being said.

As a second language speaker (Mandarin Chinese), I understand how easy it is to say the wrong thing by using incorrect words or wrong grammar, etc.  However, as a second language teacher, I also understand how important it is to look at the big picture context of what is being said and to understand the meaning without nitpicking each and every word.

I took these comments for exactly what they were intended to be. 

"I am so sorry you are getting worse and it hurts me to see you this way.  I want you to get better and maybe these suggestions will help.  I love you."

I felt the love.  Maybe later today, I'll try some caviar.  I've never had it before!

Remember this video?  While the link above shows over 100,000 views, it was actually seen over FIFTY MILLION TIMES!  Holley Kitchen became an overnight sensation when she, without saying a single word, brought metastatic breast cancer into the living rooms of millions around the world.

She made this video seven months ago ... and her disease was stable.  She was interviewed multiple times and featured in October in Pfizer's "Story Half Told."  By all appearances, she was the picture of health and to the casual observer, had years left in her.  Those of us who live the metastatic life suspected, or knew otherwise.

She died this morning. Age 42, mother of an almost-five-year-old and a seven-year-old.  Wife of a devoted husband.  Member of a huge village of those who love her.

I'm screaming both inside and out.  The world will lament her loss and there will be talk about being taken too soon, but what is being done to stop breast cancer in its tracks?  There will be wringing of hands and gnashing of teeth, but is that enough?

At times I feel such a sense of desperation. I don't want to talk about scarf tying tricks.  I don't want to talk about whether a support group should meet every week for two hours or twice a month for 1.5 hours. I don't want to talk about nipple tattoos.  I don't want to talk about pink ribbons.

Enough talk, already!

I WANT TO BE ABOUT SAVING LIVES! 

It's time to get to the real work of ending breast cancer. 

Fran Visco, president of the National Breast Cancer Coalition wrote a fantastic article outlining steps you can take to be a part of action and not just words.  The end of breast cancer will not come as a result of hashtags and social media feeds, but as a result of hard work in the areas where change can be real.

There are many steps you can take to be a part of this real work.  Take the first action and learn how you can help the National Breast Cancer Coalition reach their goal of ending breast cancer by 2020 by signing up for their National Action Network. You will receive regular updates on their progress, calls to action when they need the Network to mobilize around a particular issue and materials to help dispel myths and spread the message of what is needed to end breast cancer. You can decide how little or how much you want to engage as part of the network.

Go to the article above and see how you can engage with your federal elected officials.  Sign up to attend the Annual Advocate Leadership Summit. 

If you want to become an advocate educated in the science of breast cancer who can hold their own with scientists, government and industry officials, you should apply for the National Breast Cancer Coalition's world-renowned Project LEAD science training program.

Can't leave your home?  Check out NBCC's Online Center for Advocacy Training.  

We let Holly down.  We let Liz down.  We let Connie down.  Three women known to me, all of whom have died in the last twenty days. 

This shouldn't be.

Stop the talk and walk the walk.  Get involved in one way, shape, form or another.

Feel free to contact me if you want to engage more. I want more than a pink ribbon.

I remember when I was whining about someone's response to my situation and a good friend asked me, "What would you rather they do?"

(Side note:  I really should get a grip and stop the whining.  I need to heed my own advice and see the beauty in my world and to give more credit to that beauty.  I am lovingly and willingly supported by a core group of people who are there at every turn.  I have no lack of people who will drop everything to be with me and/or my family and these people rock my world.  They are incredible ... and I can't imagine going through this without them.)

However, as someone once said, I could have 999 people say positive things to me and one person say negative things and it will be the one negative that will stand out in my mind.  When I had a "negative" reaction to my situation (or, worse yet (in my mind), an apathetic reaction), and complained about it, my friend posing such an interesting question gave me pause to think and I've been pondering this ever since.  I think it's been about three or four months since she asked me this.

What exactly do I want people to do in response to the disease invading my body?

After months of mulling over this, I think I have come up with an answer.  I'd like people to be in my present moment and not in the moment they wish I was in.  I want people to accept my reality without projecting their denial into my present moment.

Case in point.  I received a phone call last week in which the caller said, "I hear your treatments are going really well!"

My reply to her was, "I don't know who you've been speaking to, but I've had significant disease progression over the last six months resulting in an emergency room visit, a blood transfusion and three treatment changes.  I'm not doing so well."

"I don't understand how you can say that!  You do so much and you don't look sick at all!"

"That's the nature of this disease.  It really doesn't matter how you look on the outside.  What matters is what's happening on the inside and the impact cancer is having on my body."

"But you're doing okay right now, right?"

"Not really.  I've just started a new treatment and it's too soon to know if it will stabilize things.  We have to wait a few weeks first. However,  I'm dealing with more pain and fatigue and things are more challenging right now."

"Well, I'm just going to believe that everything is going to be okay and not worry about it at all." 

How am I supposed to respond to that?  That's classic evidence of someone not entering my present moment and someone who made a conscious choice to not engage in my reality.

I get it.  It's hard.  I KNOW it's hard.  I have to live with this reality every single day.  I don't get a vacation from this and I don't get to spend any time in denial. 

What happens with denial, though, is that reality ends up coming up and slapping you in the face.  Just this week, I've read these words from others with this insidious disease:

"Well.... today happened. My oncologist came to me and told me- I am feeling serious effects of cancer. She has left it in my hands whether we try another chemo or just terminate chemo and try to enjoy the last days. 5 weeks from today my baby turns 5....... there is my new goal." (Holly, age 42, originally diagnosed Stage III in July 2012, metastatic in July 2013) 

******************

"I win. I have BINGO. I have [breast] cancer in my brain, lungs, liver and bones. No one is handing out prizes and all of those studies that they complain they can’t get enough people to enroll, all turn a cold shoulder to me. I am breast cancer trash, dying too soon to be worth a test. Which leaves me with one option.

"Chemo.

"The kind that makes your hair fall out on your pillow. The kind that makes getting out of bed hard in the morning. The kind that makes you lose the ability to feel your toes. The kind that erases your memories and makes you think slow. The kind that requires you to take energy meds. The kind that makes it so everyone in the world knows that you do… in fact… have cancer.

"People will ask me when will I be done? The answer is never. Treatment never ends when you have stage IV breast cancer. Some win and can beat it back, but since November cancer has been giving me a royal wallop that I keep falling down and am not sure if I can keep standing back up.

"After a long talk of who knows what the heck to do, my oncologist wanted to go back to Taxotere. It worked miracles last year, maybe it will again. This time without Herceptin and Perjeta to nudge it along.

"The question posed was:

"Do I want to see the cancer shrink? Do I want to have a good quality of life? or am I ready to throw in the cancer towel, hang up my hat and join the land of hospice.

"Today I want the cancer to shrink. I want it to go away."  (Mandi, age 35, originally diagnosed Stage II December 2010, metastatic October 2014)

********************

There is no amount of denial that changes these women's reality.  They are both up against the wall of running out of options.  Unlike what one person wrote to me, writing and talking about cancer does not keep our cells "in cancer mode."  To suggest such a thing, once again, blames the patient for not getting better.

I know ... quite frankly, it will be easier to deal with my illness after I'm dead.  I know that sounds harsh, but it's the truth.  It's a much lighter load to wear someone's name and/or picture on a shirt, than to be a part of their every day pain.  It takes a lot to set aside the cult of optimism that Americans are known for and to embrace someone's suffering, especially when that suffering doesn't have a happy ending.  There is no getting better for me ... I am only going to get worse until the point in which I die.  Who would willingly walk into that story?

This doesn't mean that I talk about cancer all the time.  However, it's hard for me to see the lighter side of things and my mind almost immediately goes to the deepest depths when asked simple questions like, "What makes you jealous?"

While I understand the intent behind the question (jealousy is NOT a good emotion), how many people respond with "I'm so incredibly jealous of those have no evidence of cancer in their bodies and I'm so jealous of those who are out of treatment."  Being jealous doesn't stop me from celebrating their joy, but oh, I want that for myself as well.  I want it for Holly and I want it for Mandi.  I want it for all of us living with this mess every day.

It's not all about me.  I'm well aware of that.  I do my best to meet others in their present moments as well.  However, if you ask me how I'm doing, please don't dismiss my answer with "Well, I'm just going to believe that everything is going to be okay and not worry about it at all."  That just doesn't work.  The best response at the moment is a simple "I'm so sorry."

My social media feed was filled this morning with the news of the death of David Bowie.  I'm completely disengaged from his story and outside of the passing of a pop culture icon, it has zero impact on me.  I couldn't tell you a single thing about him other than he had crazy hair and wore makeup. 

However, I also received devastating news this morning of an unexpected death of a teenager taking her own life. I immediately put down my phone (I was reading emails) and I started to shake.  I couldn't read past the sentence telling me that she was gone.  I had to wait for my husband to return from the gym so that we could read the email together. 

I don't know how to say this more bluntly.  Be present in your people's present moment, no matter how pleasant or unpleasant that moment may be.  Mental anguish and physical pain are so very real and they cannot be brushed away by "not worrying about it."

May God have mercy on us all.

When I was first diagnosed with breast cancer, I was almost immediately introduced to Christina.  Christina was already known to have metastatic breast cancer, but she welcomed me into her world and we frequently chatted online.

I sent her a package from Hong Kong for her 39th birthday.  She fully embraced the color pink and the sense of camaraderie it gave her, so I picked out some beautiful pink items ... pashmina scarves, bracelets and the like. 

Christina was almost exactly ten years younger than me in life, but so much older than me in life experience.  Her four children ranged in age (at that time) from 11 - 19, while my two children were 11 and 12.

We continued our friendship when I returned to the United States.  I was troubled by the fact that more and more treatments were failing Christina and it was clear that she was slipping further and further away.  

She was hospitalized in December 2012 with obvious signs of liver failure.  I called her for the first time while she was in the hospital and I asked if I had called at a bad time.  Of course, I meant in relation to hospital activities, but as I now well know, a casual question such as that is never just a casual question to someone staring mortality dead on.

"There's never going to be a good time, is there?"

"No, I guess there isn't.  I'm so sorry."

"It's so hard knowing someone else is going to raise my children."

"I know.  I'm so sorry." 

And we cried.

When I found out shortly thereafter that I was metastatic as well, I never told her.  I know part of her story was being comforted by a friend upon her metastatic diagnosis with the friend dying two days later.  I just didn't want Christina to think that was going to happen to her.  

Christina was able to be home for Christmas, but her body was shutting down.  

Today is Christina's Remembrance Day.  She died three years ago and there is still an ache in my heart over the helplessness of it all.  Her story is my story and it's very real and very important.

Christina lived two states away from me and we never met in person.  I've never met her family.  I've stayed quietly in the background, checking in on them from afar, but never intruding.

However, yesterday, Christina's oldest daughter wrote a very poignant post in her blog.  Ashleigh is married now and expecting her first child (who is a few days overdue!) and Ashleigh shared her thoughts about her mother's last night.  She gave me permission to share it here.

  "One thing I wanted to talk about is the fact that today is January 6th. Tomorrow is January 7th. My mom passed away 3 years ago tomorrow morning. Three years ago tonight, I was taking her to the bathroom when she collapsed and some pretty scarring things happened. I wish that wasn't my last image of her, but I am grateful that I had the opportunity to watch her and take care of her when my dad and hospice were not around. She had to get everywhere with a walker and with someone holding her upright and encouraging steps. She could not really move by herself, and that night she couldn't talk. She only communicated in groans. The only reason I knew she had to use the bathroom was that she was groaning and clutching her stomach. Instead of thinking back on the horrific events of that night and becoming emotional and depressed by them (they are why I have PTSD) I have learned from counseling to look at that night in a more positive perspective, to change the way I perceive those memories. It's a tool that my counselor taught me in order to cope with my PTSD.

  "I look at that night now, January 6th, and realize how blessed and how lucky I was to be able to help my mom the way I was. She was in effect helpless like an infant. She laid in a hospital bed that was set up in our living room. My dad and hospice were the main ones who were with her, and of course my siblings helped a little. But my mom wanted them to stay kids and be kids, so she would often ask my dad, hospice or me to do things like take her to the bathroom or clean up after her so that the kids didn't have to experience that. Anyway, as I said, she was like an infant on January 6th. I was in the room with her, even though she may not have recognized that we were spending quality time together I know we were. We were watching one of her favorite shows. I don't remember if it was friends or big bang theory. But it was one we both loved that made us laugh. Any time with my mom was sweet and precious to me. I felt closer to and happier with her than I had for a while, and it seemed like we resolved our issues toward the end, which still brings me a lot of peace. I am grateful I was there to take care of her that night. Grateful that after all the years of her taking care of me, I was able to reciprocate that back to her. That's not something everyone gets to do for their parents. I feel incredibly blessed that I got that opportunity. When she started to collapse, I texted my dad (I think he was outside or at the store or something) when he didn't respond, I held my mom upright and looked up to the ceiling and as the tears started to come and I started to shake, I just said "please Heavenly Father" and a few seconds later my dad came through the door. I was so grateful that he was there, I wouldn't have gotten through it, in fact I was so scattered and scared that all I could do was hand my dad a phone to call 911 and hospice and gather the siblings who were home and take them into my parent's bedroom so they didn't see what was going on. I felt a lot of love for my brother and sister that night too. I didn't have the best relationship with my sister Ema, but in that moment I knew our relationship was going to turn around soon (which it did while I was on my mission) and Ben and I have an awesome relationship. We're the only sibling pair that hasn't ever had huge blowout fights. We've always been close and I'm grateful for that.

  "Just thinking on that today. I loved being able to show compassion for and help my mom to do things that I was able to do for her. Soon I will be able to do the same things for my son. It will be interesting to see if he is born tonight or tomorrow. I don't know if that will happen, but I know if it does it's because my mom is up there coaching my son to wait until these two days so that some happiness can be brought on the day my family and her friends dread each year. It just fits so well with my mom's personality. She never liked being in the limelight, especially for cancer or illness. She never wanted people to deeply grieve over her, in fact she told me that she wanted me to keep on going in life in happiness. It just makes a lot of sense. Of course, the grief is felt over the course of the first couple weeks of January the most for me. So any day in the next week or so would make this thought true for me. I hope he is born tomorrow for many reasons, but it would be a comfort and a little sign from my mom and would bring me even greater joy.

  "So come on little bear!"

So many times we don't really hear the words of those left behind.  Ashleigh's post gives us a very tiny glimpse into the world of an "adult child" (she was only 19!) in witnessing traumatic events that no child should have to see.  

Researching more into metastatic breast cancer goes far beyond patient treatment.  It goes into so much more.  It goes into the heart of life ... loving our friends and family and being there for them at important points in their lives.

Christina should be here today to welcome her first grandson.  She should be here for so much more.

Written in honor and memory of Christina, 5/21/73 - 1/7/13.  Dedicated to her husband, her four children, and to all those who love her and who carry her banner. 

As you can tell from the notes, I had cancer in almost every single vertebra of my spine.  A later scan revealed some lesions in my pelvic bone and in one rib.  My original diagnosis was revised to be Stage IV because, in the words of my oncologist, "This is not recurring disease.  There's too much of it.  This is existing disease that couldn't be seen on the scans at the start of diagnosis."

I scrambled.  It was determined that my neck was too fragile for surgery of any kind and radiation was recommended.  I met with two different radiation oncologists and chose the one closest to my home.  The radiation to my neck has been the most difficult part of my treatment to date due to collateral damage to my throat and digestive tracts.

I had to be pinned to the table for radiation treatments.  I finally threw the mask away last year ... not a keepsake I wanted!

I was fitted for this neck brace and wore it for five months.  The only time I took it off was to shower and for those 20 radiation sessions.  I still have the neck brace, but it's been moved to a shelf in the garage.

The recommended treatment worked!  The radiation killed off the tumors and I have close to full mobility in my neck.  Surgery was never needed and my science-based oncologist refers to me as one of her miracle patients. 

It's been three years since I received that phone call on January 3, 2013.  Ever since then, I've been taking daily steps to live with this disease.  I've been on oral treatments ... swallowing pills of one form (or quantity) or another on quite the regular basis.  Daily, two weeks on, one week off, one week on, one week off, daily again, three weeks on, one week off, etc.  Always some kind of schedule to follow.  Throw in a few shots that were given on a monthly basis and you have the story of my life for the past three years.

I have had anxiety dreams during these three years ... anxiety generated by the fear of forgetting to take my medication.  I have awakened more times than I can count with the thought, "I was supposed to take/do something at xyz time and since I didn't do it, I'm going to die!"

I settled into an uneasy alliance with these dreams ... accepted them for what they were ... and moved on.

Last month, the last oral option available to me failed.  It just didn't work and I was switched over to IV chemotherapy.  This is the first time I've been on IV chemo since August 2, 2012 and after all these years, I've finally gotten a port.  

The bruise is healing and I'm getting used to how it feels.  I think it's higher than most ports are placed, but I'm not going to complain.  It is what it is.

However, something that struck me is the fact that I'm no longer taking daily "action" against this disease in my body.  I take a few vitamins and minerals, but it's not a big deal if I miss a day or two of doing so.  I had said one reluctance to go on IV chemo was the idea of being tied to a schedule ... and yet, not following a daily routine of pill swallowing is a bit disconcerting.

You see, living with cancer is a daily affair.  Taking those pills were a daily reminder of what I was up against and now I have to adjust to a different way of thinking about it.  Will it be easier to do something that requires a once a month (it may be shortened to once every three weeks) trip to the clinic and that's it?  Or will it be more difficult to not be doing something every day?

Time will tell.