Ibrance update

The first three days of Ibrance were full of mild nausea, moderate fatigue, and general ill-feeling. Thankfully by the Monday I felt like myself again. The fatigue has continued, but who doesn't appreciate an afternoon nap? The first two weeks were basically fine.

Today, the beginning of week three, started with more fatigue (i.e., I didn't get out of bed until after 1 PM), and then moved on to diarrhea. So I am still in my pajamas, even though it's lovely outside and I had planned to run errands and do some garden work. Thankfully Dr G gave me great meds to address the diarrhea.

I'll take the Ibrance for one more week (21 days total), then get a week off. Dr G wants me to have labs taken again in two weeks. I'll see him after Passover and hopefully start another Ibrance cycle if my white, red and platelet counts stay high enough.

So I'm taking today off and will nap again in between doing loads of laundry. And that's life on chemo!

I am a blogging queen

Today I received this message:

Nicole.lascurain@healthline.com has left a new comment on your post "There and back again":

Hi Jill, 

I am happy to inform you that your blog has made Healthline’s list of the Best Breast Cancer Blogs of 2015! 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: http://www.healthline.com/health-slideshow/best-breast-cancer-blogs 

We created a badge to help you publicize your achievement: http://www.healthline.com/health/breast-cancer/best-blogs-badge-2015

We encourage you to embed this badge on your site and share your status with your followers. 

Thank you again for providing a great resource to the Breast Cancer community! I’m happy to answer any questions you may have. 

Best,
Nicole 

Nicole Lascurain • Assistant Marketing Manager
p: 415-281-3130 | e: nicole.lascurain@healthline.com
Healthline • The Power of Intelligent Health
660 Third Street, San Francisco, CA 94107
www.healthline.com | @Healthline | @HealthlineCorp
About Us: corp.healthline.com

Here is the Healthline link. I am number two on their slideshow, number one of the best breast cancer blogs of 2015! I am proud to be in the company of my new friend Mandi (Darn Good Lemonade, number 9 on the Healthline blog list)

Thank you Healthline for this recognition.

Taxotere so far

On Monday I had my first dose of Taxotere (docetaxel). The PICC line insertion went smoothly, the infusion went smoothly, and today was my first day off the steroids.

I have slept well the past few nights with the help of my buddies Ambien and Ativan. (Although last night I finally gave in to the famous Decahedron steroid side effect and shopped online. But I only ordered business cards. I have no explanation for the shoes I bought this morning.)

I woke up at a reasonable 10:30 AM today. After checking email etc. and buying aforementioned shoes, I showered, dressed, ate and walked the dogs. Up a hill. So I must feel okay.

I ran errands (library, grocery store), picked up Rik from school, ironed some shirts, and caught up on three old episodes of a favorite TV show. Cooked dinner. And now blogging. So I must feel okay.

I have noticed one new bit of potential neuropathy. The skin where my left thumb bends had been cracked for a few days. The crack has healed, but I do have some small pain there. Is it neuropathy? Who knows.

Tonight I will have my first night's sleep since Sunday without steroids. I will try to manage on my own, but may pay the price of reverse insomnia after three nights with sleep aids.

But I feel okay!

By the way, these are the shoes. Good price, no? I hope they fit, because they are too cute for words!

Pikolinos Gandia 849-8964

What I learned at the LBBC mets conference

Living Beyond Breast Cancer (LBBC) held its annual conference for women with metastatic disease -- one of only two such conferences in the USA that I know of -- and invited me to participate again. This year they added another day for about 30 women with mets to be trained as advocates to increase visibility and support of, and research into, metastatic, stage IV, advanced breast cancers. (Full disclosure: LBBC paid for my travel and hotel expenses.)

What I learned, in a nutshell:

• An analysis of the Metastatic Breast Cancer Alliance Landscape revealed that only 7% of the $15 billion funding all breast cancers supports research into metastatic breast cancers. That seems very low to me.

• 108 Americans die of metastatic breast cancer daily, according to the above document. 40,000 die in one year. You can imagine how big an impact this had on the 300 conference participants. Over the three days of the conference, all of us represented these dead.

• The American Cancer Society (ACS) is often quoted as saying that only 2% of all National Cancer Institute research into ALL cancer supports research into every kind of metastatic cancers, not just metastatic breast cancers. This percentage is even lower. I've asked the ACS to verify.

• We need to increase awareness of metastatic breast cancer in the vernal breast cancer population. Maybe we are the worst nightmare for women with early stage breast cancer, but research shows that about 30% of them will end up with mets. We need to change the message of "fighting" to focus more on "living with" advanced breast cancer.

• They told us "Advocacy is the application of pressure and influence on people and institutions that have the power to give you what you want."

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Here are some good Twitter hashtags on metastatic breast cancer:
#don'tignorestageIV (Beth Fairchild)
#BCSM (Metastatic Breast Cancer Social Media)
#livingwithmets (LBBC)

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METAvivor is the only all-volunteer run nonprofit organization directly supporting research into stage IV breast cancer.

Metastatic Breast Cancer Network funds research, advocacy and provides support for women living with mets. I think we might be able to include Komen here; more on that later.




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For the session on pain, fatigue and insomnia, Dr Don Dizon began by quoting Eleanor Roosevelt: "You must do the thing you cannot."

Cognitive behavioral therapy may help treat neuropathy. I'll ask Dr G about this one.
Ginseng and guarantee may provide some benefit.
Medical marijuana or hash oil may help with pain and insomnia.

Pets contribute to insomnia. If they're taking up the bed, you possibility of poor sleep may increase.

Get out of bed if you can't sleep. Read, go online, watch TV - but get out of bed.

Study relaxation training (i.e., yoga breathing).

Dr D used these last two phrases eloquently.

1. To live a better life, be Practical, Realistic, Optimistic.
2. Optimism is a clinical trial.

If Dr G ever stopped practicing medicine, I would move to Boston for Dr Dizon to treat me. He was the best speaker at the conference.

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Julie Lanford, a cancer dietitian, led the final session. Among many things, she talked about the need to eat more of the following in the form of whole foods, not supplements:

• probiotics (kefir, yogurt, sauerkraut, and sourdough bread)
• prebiotics (beans, oats, Jerusalem artichokes, asparagus, and bananas)
• omega 3 fats (soybeans, walnuts, flax seeds, fatty fish and canola oil)

She encouraged us to have our vitamin D levels checked regularly.

And finally, if you eat a new food three times or more per week, you've created a new food habit.

LBBC "die-in"

I met Jennie Grimes at the recent Living Beyond Breast Cancer conference. She was also asked to join the advocacy group and was instrumental in creating our "die-in." And Jennie and I have in common our work with the HIV/AIDS communities.

Do you remember the sit-ins of the 1960's and earlier? Mahatma Gandhi, India's great leader, created this non-violent form of protest. Encyclopedia Brittanica writes:

Sit-in, a tactic of nonviolent civil disobedience. The demonstrators enter a business or a public place and remain seated until forcibly evicted or until their grievances are answered. Attempts to terminate the essentially passive sit-in often appear brutal, thus arousing sympathy for the demonstrators among moderates and noninvolved individuals. Following Mahatma Gandhi’s teaching, Indians employed the sit-in to great advantage during their struggle for independence from the British. Later, the sit-in was adopted as a major tactic in the civil-rightsstruggle of American blacks; the first prominent sit-in occurred at a Greensboro(North Carolina) lunch counter in 1960. Student activists adopted the tactic later in the decade in demonstrations against the Vietnam War. 

A tactic similar to the sit-in, the sit-down, has been used by unions to occupy plants of companies that were being struck. The sit-down was first used on a large scale in the United States during the United Automobile Workers’ strike against the General Motors Corporation in 1937. See also civil disobedience.

Jennie gave her permission for me to share her blog post about our "die-in." As we arranged ourselves to form two lines, she snuggled in next to me, took my hand, and with my roommate holding my other hand, we, for that moment, represented the 108 Americans who would die of metastatic breast cancer that day and every day.

philadelphia story

13APR

The terrors of the early AIDS epidemic. The unknowing. The limited treatments. Inadequate funding. Living within a limited timeline. Dying before your time. All while watching your friends around you die, from the very disease that you fight. With over 40,000 deaths a year during the height of the AIDS epidemic, these numbers startled the country. Shook us to our core and demanded that we all do more.

Eerily, the same thing is still happening today. At the same rate, with over 40,000 women dying of metastatic breast cancer (stage IV) each year—averaging 108 deaths a day. Again, 108 women, just like me are dying every. single. day.

I was again  reminded of this disheartening statistic by researchers as I attended Living Beyond Breast Cancer (LBBC)’s yearly Metastatic Breast Cancer Conference in Philadelphia this past weekend.  An event that took every bit of my strength, as it is tough to do much of anything only three short days after chemo, let alone fly across the country.  But away I went. Networking with these women, gathering information and just sitting in a room full of women like me- is a connection that is worth any amount of neupogen, face masks and coffee.

And this year was made even more special, as I was invited to be a part of LBBC’s inaugural class of women with MBC for the “Hear My Voice” advocate training. A training that connected me with women across the country, of all ages (ranging from 24-68), and gave more space and voice to African American women with MBC then any other program that I have participated in during my 4 plus years of living with this disease.

Inaugural “Hear My Voice” advcoates

It was magic in that it allowed us to rally, to brainstorm, to tease out the reality of this disease without us needing to make it pretty.  To make it polite.  The training gave us the information, the tools and put it in our hands—I just don’t think they realized how quickly we would move into action. And to be honest, neither did we.

After a grueling day of information and the noticeable absence of women no longer with us, a group of us sat at dinner drained.  A few even unable to eat, as the heaviness of our own journeys collided into the reality of our collective.  It was then that the 108 number came up again.  That 108 of us died today.

That during the course of our three days at the conference, over 325 were estimated to have died, a number that equaled the number of conference attendees.  I realized, “We died.  Over the course of the past three days of the conference, that death toll estimate wiped out the number of people at the conference”.  The shock, the stomach dropping reality moved us into action.

Many of us have likened this journey to the early years of the AIDS epidemic, the limited prognosis and the number of our peers passing away as they speed through limited treatments.

With organizational speakers even sharing the parallel through their own presentations and demanding that we push and suggesting that we find a way to “ACT UP”.  ACT UP (AIDS Coalition to Unleash Power) was developed in the midst of the AIDS crisis to bring about legislation, medical research and treatment and policies to ultimately bring an end to the disease by mitigating loss of health and lives. A diverse, non-partisan group of individuals united in anger and committed to direct action to end the AIDS crisis that led a number of actions to demand more.

I have learned a lot from the AIDS community first hand, as my “pre-cancer career” was spent working with these amazing individuals for over a decade.  I was able to view this level of pushback, advocacy and coordination,  including my own arrest in protest at the White House doing a “die in” to protest abstinence only funding.  A “die in” is similar to a “sit in”, a non-violent form of protest that pushes a bit further to demonstrate the death of the participants.  A striking imagery that screams– WE ARE DYING!

Perhaps we were not at the White House this past weekend nor had the time to make a perfectly organized protest.  But we did have a large group of women with MBC disease (the largest group that meets annually)- some of which would not make it to the next year. That we at least had the capability to lay down and make a visual mark to symbolize the 108 of us that die each day.

So we rallied the troops overnight, with 3 am posts, emails and drafting.  After alerting our LBBC trainers to our plan, we were supported and logistically helped with planning a “die in” for 108 of  (their staff was AMAZING).  Set to happen midway through our last morning of the conference, we even had the inspirational director of the Metastatic Breast Cancer Network Shirley Mertz join us.  And at 10:45 am Sunday, we laid down together.

Hand in hand, a eulogy written by the amazing Beth Caldwell, a young mother with MBC, was read aloud:

“Dearly beloved, we are gathered here to say our goodbyes to the 108 Americans who will die of metastatic breast cancer TODAY, and EVERY day, because there is no cure for our disease. They are our friends, our mothers, our daughters, our sisters, and they deserve better. They deserve a cure, and we honor their memory by DEMANDING IT, not someday, but NOW. And now, let’s have a moment of silence for those 108 women and men who are no longer with us.”

Laying head to head, hand in hand,  I heard the sobs of the women around me. The moment of silence echoing the last breaths of so many of us that have gone before. My Keeley. Jolene. Linda. Tobi. Helen. Jaimie. Carla. Jenn. Darcy. Tracey… and so on…and so on. We collapsed into each others arms afterwards.  The endless hugs and tears of what a moving moment to finally show our reality.

Prior to the event however, I was approached by another woman with Mets, forcefully asking that we not do something so drastic.  That this imagery was not something that should be shared with our kids, our families, or others with MBC.  That there were other ways that we could do this.  Other ways that were not so morbid, so ugly, so unnecessary.

Her concerns followed me on to the plane that afternoon.  Aside from the emotions of the “die in” still lingering and my own exhaustion setting in from the weekend, I felt haunted by this woman’s words during the six hour flight back to LA. Did we go too far?  Was it too much?  To dark, too scary? An unnecessary image? Was this not what the MBC community needs ?

That was until my flight touched down and my phone lit up with the news, that another young woman- the second that I knew this week- had died from MBC.  A 34 year old woman, the same age as me.  And I suddenly had my answer- we have NOT gone far enough.

Sephora died at 34, the same age as me. A Huff Post writer and advocate, she will be missed.

Pamela died from Metastatic Breast Cancer at 29 leaving two small children.

Would I love to happily pose for a “live in” rather than a “die in”? 100%.  But I have tried those tactics, done those walks, shared my blog and I continue to get sicker while  my friends around me continue to die. Harder for our families to see an image of us laying on the ground “pretending to die”, is the fact that we ARE DYING.  That they are actually watching us die. Why have we not rallied harder?  Why have not pushed past the pretty imagery of breast cancer like our leaders in the AIDS epidemic to demand more?   The women that are no longer at the conference each year, the ones missing from my photos, aren’t there because they were cured.  They aren’t there because they died.

I have lost my fertility. My career.  My hair.  My energy.  My hobbies.  A number of women, my friends, to MBC.  The only thing that I have left to lose is my life.  So I am making my demands on cancer and taking back what I can.  Doing what I can to fight like hell for all of us with the time that I have left.

My demands include:

• Changing the funding directed to Metastatic Breast Cancer.
  Of the $15 billion invested in breast cancer research from 2000-2013, only SEVEN percent was spent on stage IV disease. 100% of deaths from breast cancer are due to stage iv. Funding must reflect this. #stageIVdeservesmore
• Adequate epidemiology and statistical counting for women living with MBC Currently, the breast cancer data system (SEER) only counts women at the time of INITIAL diagnosis. This means that those rediagnosed with stage IV (like myself, Tracey, and so many others), are never entered into Federal databases. Impossible to receive adequate funding, for inadequate data. #stageIVdeservesmore

• That as a community we lift our MBC sisters of color and those with limited health care access. The stage of disease at diagnosis is higher in African American women and despite a lower overall incidence, the survival rate for black women diagnosed is 20% lower than white women. #fightingforALLofUs #everyColorofStageIVDeservesMore

• A coordinated alliance with our sisters with early stage breast cancer. As 30% of them will become us (after my own initial diagnosis of stage 2 disease, I know how very true this is), we need your voices, your push, to carry ours on. Especially as we continue to die from this disease, please carry my voice. #MBCally #notMeButCouldBe

How you can help?

• Stay tuned in the coming months for more advocacy, more info, more legislative push to make these changes real.
• Share this post, and others every #MetsMonday. Help us to make the noise that we need to make change.
• Support those in your life living with this disease. Sometimes we need you to fight for us, as this disease can sometimes knock the fight right out of ya.

I’m not asking us to all lay down in protest, I am simply asking that we no longer just lay down in defeat.  I ask that we no longer lose 108 every day.  I AM asking us to “MET UP“.

Power PICC line is in

I am now the proud bearer of a new Power PICC line. The procedure went smoothly once I understood it and the risks vis-a-vis a simple line with the powerful chemo Taxotere.

This is what it looks like.

It can stay in for up to several months, needs weekly flushing, and should last until I am ready for a new port.

The Avastin and Taxotere infusions were also smooth and given that I am bouncing on Decadron, I should have plenty of energy today and tomorrow. We'll see what happens later in the week.

Port Removal Update (Save Your Family)

Last Friday they removed the current (my second!) port-a-cath. The fistula just below it showed signs of a staph infection, so now hopefully the red line on my neck will heal along with any other issues.

Conscious sedation (i.e. Versed and Fentanyl) gives one an odd feeling. I undressed, put on a hospital gown and an extra pair of socks, and a nurse started an IV line in my right arm. They rolled me from the prep area into the interventional radiology surgery area, which featured lots of high tech x-ray etc. equipment and an enormous computer screen for the doc to track his work.

I scooted from the gurney onto the "table" and tilted my head to the left, away from the port site, while Nurse Romeo set up a blue fabric screen with a big hole out the left side, to prevent claustrophobia on my part.

The nurse gave me Fentanyl first (for pain relief) and I almost immediately went into la-la land. Then she gave me the Versed and I was no longer aware of anything.

Versed is funny: you probably can answer questions the staff put to you, but you don't remember what's happening from moment to moment. Rik will have to say if I repeated myself over and over again afterwards, which is the typical side effect.

We went to lunch at Mediterranean Kitchen (oh those farmer's wings!) and then walked back to Swedish for my monthly shot of Faslodex and my every two months' dose of bone-strengthening Aredia.

It ended up a very long day. Rik had to go home to feed the dogs, then came back for me at 5 PM. In the meantime, Dr G walked over to say hi and check in with me before he left for the day.

After we came home, I crashed on the bed for a couple of hours, woke up at 8 PM, had a snack, and took the first dose of Ibrance round 2. I spent the weekend recovering, relaxing in the sunny weather and am ready for today's scans.

On ignoring doctor's advice

I am not going to say doctors are gods or anything, but they did go to school for many years more than I did so I can easily admit that they might know more about medical crap than I, even if their bedside manner really sucks at times.

I also strongly believe that as patients we owe it to ourselves to do our research, listen to our options, and do what we feel will help us best. And if this includes juicing, yoga, fasting, acupuncture, turmeric, coffee cleanses, or whatever, we also owe it to ourselves to listen to the advice of our medical professionals.

It is a real shame that some people die when they choose to ignore medical advice and advancements. New research out of Australia focuses on young cancer patients who are ignoring medical advice to cure their cancer through diet changes and result in unfortunate outcomes. These popular bloggers are not properly trained medical professionals so its not that surprising that these are the results are what they are.

If diet could cure us, we wouldn't need doctors.

We must listen to our doctors advice, and sometimes question it, but heed it for the most part. If we don't listen to our doctors and heed their advice, we can't fully question it and then make our good decisions based on our experience with it.

Why am I so tired?

I am tired. A lot. I need naps. I am sure a doctor will tell me its due to fibromyalgia or rheumatoid arthritis. All I know is I need a nap. I slept almost 12 hours last night and feel that I need a nap later today.

Yes I will talk to my new primary care on Monday but I still will take naps. Its not just that I need naps, I don't have the energy to do a lot of things I want to do, such as see friends.

But I digress. Its been a busy day so far and its not even noon! I'll have to fit in a nap later.

Why do people read my drivel like this? Its awful.

Change

I don't like change. I like my little 'ruts' that keep me doing the same thing over and over again. And I'm usually okay with it.

However, my health requires me to make changes, regularly. I look back on my life in recent years and can recall many things I used to do, for decades, but do not any more because I can't.

For example, if you have read my blog for a while, you may note that I used to go for a daily walk. Every day, rain or shine, I would go out for a walk, usually a fairly substantial walk for an hour. I really enjoyed it. Now the idea of an hour walk has me cringing inside. I can't. Its a combination of all my issues which make it impossible for me to even think about more than a 20 minute walk.

I also used to do more than go for long walks, I would climb mountains, go skiing, ice skate, bike ride, and more. I was an outdoor person. Now I am more of an indoor person. I have watched so many Lifetime movies that I know the plots of some of them by heart. (My husband believes these will rot my brain but I beg to differ on that.) After being out and about for a bit, I need to come home and sit or lie down and relax. Then I turn on the TV or read a book or knit.

As I age*, I am learning to accept change more. Well, okay, sometimes I struggle with change and sometimes I make changes intentionally. Yes I did change my PCP but I think that's enough change for a while.

Unfortunately my health may force more changes that I am not ready to make. Damn.

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*I am not that old. I am still 37. And this article which talks about mental sharpness in older people - defined as over 50 - made me feel old!