I started this blog four years ago when I was first diagnosed with breast cancer.  At the time, it was thought to be Stage IIIb, but a year later, it was discovered to be metastatic.  I had transferred from overseas to the US in July of 2012 and my oncologist revised my original diagnosis to Stage IV and the rest is history.

I started this blog under a different name (Victory Shengli) and it was primarily a tool for me to process my thoughts and to keep family and friends informed over my (our) situation.  In late September 2014, I changed the name to "I want more than a pink ribbon" as I delved more into advocacy for research, especially for metastatic disease. 

I've tried to post at least once a week and my posts generally reflect a broad cross section of living with cancer.  I talk about my faith, my family, my pets and my advocacy.  I complain at times and I take lots of pictures!  Good thing I don't post them all.  I write mostly for myself, but I do find I also write for an audience.

I was very pleasantly surprised when I received an email from Healthline yesterday:

"I am happy to inform you that your blog has made Healthline’s list of the Best Metastatic Breast Cancer Blogs of 2015! We understand that living with Stage IV cancer & treatment varies vastly from early-stage cancer, so we created this new list to honor those who write about Metastatic breast cancer. Healthline’s editors carefully selected each winner based on quality, frequency of updates and contribution to the community. You can see the full list here."

I didn't even know such a list was being compiled ... and to be included in such a list of women I hold in such high esteem is humbling.

Many thanks to Healthline and many thanks to you, folks who read my ramblings.

I recently read a post regarding the upcoming Thriving Together 2016 Metastatic Breast Cancer Conference (sponsored by Living Beyond Breast Cancer).  Comments on the post included a woman advising another woman to drink lemon water with baking soda as a way to keep her metastatic disease under control.

I've gotten so much better at not challenging every single wacko claim that crosses my newsfeed, but the "alkalining your blood" (the correct term is "alkalizing") thing is one that manages to hit my hot button.  I challenged the person who made the comment and in the exchange, she accused me of being hateful, mean and angry.

Here are the screen shots.  All names but mine have been blocked out.  Sorry for the repeats, but screen shots are hard to capture and edit without losing their integrity.

What troubles me about this exchange is how people are sucked into "pseudo-science" and assume it to be real.  The reasoning looks and sounds good and it supports the supposition that "natural is better," so some absorb the lies like a sponge absorbs water.

Another issue that troubles me is that when someone follows conventional treatments and adds an alternative "something," yet gives the alternative "something" the credit for their health and well-being.  The conventional treatment has absolutely nothing to do with how well that person is doing ... it's always the alternative. 

In that same line of thinking, the science disproving the claim is completely ignored.  Notice how this person completely discredited not one, but two scientific challenges to the alkaline theory.  It didn't support her belief, therefore, the science was "bullshit."

And the most troubling thing?  Someone who didn't agree with her was angry, scared, mean, ignorant, a hater, etc.  In fact, the original poster provided nothing to support her claims (other than some attempt to link to "the truth about cancer" that linked to a coupon page) and continued on a personal attack to discredit what I said.  She knows absolutely nothing about me ... has never read my blog or my page ... yet felt free to make broad, sweeping accusatory statements about me as a person.

Maybe I shouldn't have engaged in the conversation.  However, I did and I can't change it.  Not quite sure I'm proud of the "kiss off" image I used at the end, either.  

What I am sure of, though:  IT'S IMPOSSIBLE TO CHANGE THE pH OF YOUR BLOOD VIA ANY AMOUNT OF FOOD OR BAKING SODA!!! 

Life doesn't stop because I have metastatic breast cancer.  In fact, I feel like it moves even faster than normal ... perhaps this is because I'm so aware of the passage of time.  Time is limited.

It's been a challenging week.  I help care for my aging in-laws, driving my mother-in-law around for various appointments.  Last week, in addition to a dental appointment, we tackled the department of motor vehicles to get a California handicap placard for her.  The earliest appointment I could get was six weeks out, so we took the plunge and showed up without an appointment, but with a two-hour wait.  Yes, I wanted to sleep as well!  Mission accomplished, though ... she now has the much needed card.

We got a second cat at Christmas time.  We knew this would be stressful for our first cat, but we didn't expect him to break out in what's known as feline acne.  His lower jaw (outside) filled with blackheads and he started to click his jaw.  I took the poor little guy to the vet, only to find out that he has moderate to severe gingivitis and gum disease, with a couple of missing teeth and one loose back tooth!  Wow!  Talk about feeling like a failure.  I LOVE my pets and I was heartbroken that our beloved Jesse has most likely been dealing with this for quite some time, but it only became obvious this past month.  He had to have his chin shaved and he's on antibiotics for two weeks.  I take him back on March 4 for a minimum of a teeth cleaning, if not for some extractions.  The nightly antibiotic administration is a challenge, but he's doing okay.  In fact, he's much perkier and I think he's feeling better.  But still.  Bad mommy moment. 

In between driving my mother-in-law around and driving the cat around, I'm teaching my 15-year-old daughter how to drive.  That's going well and I'm looking forward to her having her license.  I also drive my son around and on Saturday, that included going to a conditioning class for his soccer team.  He has gone to this class several times and nothing was new.

Except for this:

Six hours after his class, he started to break out in hives.  His class is an outdoor class and they spend time in the grass.  Something in the grass has caused an allergic reaction that after 48 hours, is beginning to settle down, but still popping up in random places.  He's responding well to antihistamines and is in school today, but he spent a pretty miserable Sunday trying not to scratch.  (We've had so much rain this year that there are most likely new pollens/allergens.  One of the other boys also had a reaction, so there is a possibility of something used on the grass that could be having an impact as well.)

My husband's job is very demanding and he is having to spend more and more time trying to resolve problems.  He works very hard to provide for his family and I'm very grateful.  He wishes he could spend more free time with us, but the nature of silicon valley often requires work on both evenings and weekends.  He works in research and development for a medical device company and his work gives me special insight on what it means to bring a medical product to market.  I know the thousands and thousands of hours of testing and observation that go into FDA approval.  While not perfect, I'm still willing to "bet" on FDA approved products over the "woo woo" of alternative treatments that are pushed to market with little to no oversight.  (Don't get me started!  I just read a supposed metastatic breast cancer patient promoting the use of a teaspoon of baking soda each day to treat metastatic disease because " cancer can't live in an alkaline environment."  Please, let's just stick to science.)

Life with cancer or life without cancer is life.  There's so much to deal with and I'm glad I'm feeling well enough to do so.  Today I booked tickets to the east coast for April ... and am hoping that I'm still feeling well enough at that time to take this long awaited trip.

Everyday life, everyday joy.  I'll take it.

I saw the oncologist yesterday in what was supposed to be a routine visit.  We check the blood work, check how I'm feeling and she signs off on the next round of treatment.

Only it didn't go that way.  While my red cells are doing fine after last weeks transfusion (I ended up going in on Friday) and while my white cells are holding steady, my platelets are dropping at a somewhat rapid rate.  They are too low for me to start another chemo cycle, in spite of having a week off.  We're waiting another week to see if they rise on their own, otherwise, I may need a platelet transfusion.

In the midst of all this confusing blood stuff, I've actually been feeling better than I have in a while.  I do get tired ... by the end of the day, I'm quite ready to crash and relax ... but overall, I'm feeling more "normal."  I asked the oncologist if the blood issues were cancer related or treatment related and she couldn't give a definitive answer.  We just don't know.

As you know, my cancer is tracked by both scans and tumor markers.  The tumor marker that measures for my cancer detects a protein released by the cancer into the blood stream.  The normal level is below 3.8, although, we'd be pretty happy with anything below ten.  My tumor marker has been rising for months, along with pain levels and general malaise.  I changed treatments from Xeloda to Ibrance/Femara to Aromasin/Afinitor to Doxil, all to no avail.  In fact, my tumor marker tripled from 92 to 275 after one cycle of Doxil and then rapidly rose to 302.8 a few days later. 

I was switched to my current treatment, Abraxane.  After one cycle, I'm feeling much better and my hope was that the tumor marker remained stable, or at least dropped 20 points.  I told the oncologist that I didn't really care what the number was since I was feeling so much better.

The results came in today ... they dropped by almost 2/3 to 116.4.

Wow.  Just, wow.

I spent the holiday weekend (and my 53rd birthday, woo hoo!) in the mountains and I was reminded of this verse:

"I look up to the mountains;  does my strength come from mountains?
No, my strength comes from God, who made heaven, and earth, and mountains."  Psalm 121:1-2 The Message

I still have cancer, but I'm feeling better. I am grateful.  That's good enough for now, although, I'm still very willing to admit that I want more.  I want the cancer to be gone, or to be so minuscule that it has zero impact on my health.  I want my blood to be back to normal. 

The current chemo is fairly easy to tolerate.  I have lost my hair and this time, I actually have a wig.  I've only worn it once as most of the time, I wear hats.  The wig has a bit more gray than my natural hair, but it's pretty hard to find salt and pepper wigs.  I'm pretty satisfied with it.

I'll be honest ... I didn't think I'd live to see this day. My mother, seen in the photo above (holding me in summer 1963), died at age 52, a short 13 months after her diagnosis of breast cancer. She died six months after it was known to be metastatic disease. This was in 1989.

She was only 26 in this photo. She had already lived half her life.

When I was diagnosed with metastatic breast cancer at age 49 (I actually had metastatic disease a year earlier.), was it any wonder that I didn't expect to live long? I had my mother's history staring me in the face. I even asked the oncologist if I was going to die on July 2nd after my 52nd birthday like my mother did. It was a rhetorical question, but it shows how aware I was the passage of time and how fleeting it is.

So here I am - 53 years old, an age my mother never reached. I remember breathing a sigh of relief when my sisters and husband reached that age, as if there was something magical about it that would protect them from harm.

It's a bit different for me. I'm incredibly grateful for the gift of more time, but it's poignant in that I know that each day, each birthday, brings me closer to the time of my death. I know this is true for everyone, but I am acutely aware that this could well be my last birthday on this side of eternity. I'm not breathing a sigh of relief for reaching this age, but I do breathe a sigh of gratitude each day for waking up.

Happy birthday to me! I get to be 53! I am glad.

I have been bald for four days now.  I had my head shaved on Friday because the hair was getting into everything and was becoming a nuisance.  My husband vacuumed the walls of the bathroom as that seems to be where the shedding happened the most.  I'm still picking hairs off my pillow.

I've been living with breast cancer for four years.  The average citizen doesn't know that as I "look so good!"  However, now that I have a bald head, the cat's out of the bag.  (Who put the cat in the bag to begin with?)

On Friday, I was stopped in a grocery store and asked about my turban (see in last week's photo).  On Sunday, I had the following conversation.

Here's the background.  Not only am I the mother of two teenagers, I am a caregiver to my aging in-laws who are in their mid-80s.  They live next door to us and my mother-in-law has increasing short term memory loss.  I've been attending workshops on this topic, as well as reading as much as I can about it in order to be as loving and as kind as I can for her in this stage of life.  

Because of the training I am receiving, I am sensitive to others who are in the same position.  There is an elderly man in my church who has short term memory loss as well, but further along on the scale.  He is the one who approached me on Sunday.  I was wearing the hat in the above photo.
 
"Tell me about your head!"

I was a bit taken aback ... no, "hello," or anything like that, just a rather abrupt command/demand.  But I looked at him and remembered his condition and smiled.

"What would you like to know about my head?"  (I wanted to clarify the information he was looking for.)

"Does your head mean you have cancer?"

"Yes, it does.  I do have cancer."

"Do you know Jane?"   (Not her real name)

"Yes, I do know Jane.  I've gone with her to many of her appointments."

"Jane has cancer, too!  My wife is Jane's husband's sister!"

"Yes, I know.  They are all good friends."

"Are you having chemotherapy?"

"Yes, I'm having chemotherapy."

"Jane is finished with chemotherapy.  We had a party for her when she was finished.  When will you be finished?  Maybe you can have a party, too."

"It's really great that Jane is finished with her chemotherapy.  I was at her party and I'm really happy for her.  However, I have a different kind of cancer than she does and I will never finsh chemotherapy.  I will be on it for the rest of my life." 

"Oh.  I didn't know that could happen."

"I know.  Cancer is different for different people."

And the conversation ended.  I didn't go further in talking about metastatic disease because of my audience.  To be frank, I will probably have this exact same conversation with him again next week ... and the week after ... and the week after.  That's the nature of memory loss ... you don't remember what you forget.

That's kind of how it is in Cancer Land as well.  People are conditioned in their responses to the disease and everyone acts as if we have control over it, when, truth be told, we have no control at all.

However, as an ambassador, it's my "job" to be patient and courteous as I press on throughout my days, fielding questions about why I have a bald head.  It's more of an opportunity than I realized and I'm running with it.

The general public has memory loss when it comes to metastatic disease.  It's only through constant repetition that the facts can break through and become a part of the conversation.

Last week's marathon of scans resulted in a good consult with the oncologist.  In short:

1.  Increased activity in the liver with two larger tumors, the largest being 1.8 cm (.7 inch). There are also many (more than 30) smaller tumors.
2.  Increased activity in ribs and right shoulder blade.  Stable everywhere else.
3.  NO BRAIN METS!  Headaches are most likely a combination of treatment side effects, anemia and aging issues relating to the broken vertebra and radiation I had to my neck three years ago. 
4.  Stable disease throughout the spine with no change since last scan.

I just completed my third week of the new chemotherapy.  My hair is falling out very quickly and I've taken to wearing hats and turbans to avoid hair falling into everything.  I will most likely have my head shaved at some point in the next couple of weeks.

The loss of my hair does NOT indicate that I'm getting worse.  It does reflect a change in treatment, but all early signs are that this treatment is working!  My pain level is nowhere near what it used to be and my liver functions have returned to normal.  I mentioned that I was "cautiously optimistic" and my oncologist replied, "I am cautiously optimistic as well, with more emphasis on optimistic."

While I still get very tired, I am feeling better than I have in months.  

I am grateful for a medical team that doesn''t give up.  I am grateful for the HUGE number of people who love me and support me and who are right here with me at all times, emotionally, mentally and physically.

Mostly, I am grateful for God who remains constant, regardless of my moodiness and lack of understanding.  I don't pretend to grasp any sense of purpose in my having this disease.  I do know that God is not some vending machine or magic genie granting wishes voiced in the form of prayers.  God is God and God is good regardless of my health. 

I still have cancer.  I still have God.  I know which one is greater.  I know which one defines me.  Just in case you don't know, it's not the cancer.

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.