Pain update

I spent a long, quiet week filled with discomfort and pain. Sunday's sunshine made it easier to get out, but I had noted the wrong date for my lunch. I ate anyway (I was hungry! steroids....) and then ran into a friend of a friend I hadn't seen in a long while. We had a lovely catch-up.

On Monday The Amazing & Wonderful Nurse Jacque flushed my PICC line (remember my PICC line and the old port-a-cath?). A nurse at the Swedish Wound Healing Center changed the dressing over my old port site. She also taught me how to remove and insert the special stuff they use to promote internal healing. That is really one deep hole but I think it's coming along nicely.

On Tuesday The Amazing & Wonderful Nurse Jacque gave me a shot of Neulasta. Dr G increased my fentanyl from 25 mcg to 50, then to 75, and yesterday to 100 mcg. I felt a bit woozy all day ling until I realized that not only didn't I eat breakfast, I forgot to take my morning meds, including the Cymbalta. That can really mess with you if you miss a dose. Their website says to "take the missed dose as soon as you remember. Skip the missed dose if it is almost time for your next scheduled dose. Do not take extra medicine to make up the missed dose." So I took my morning dose at 2 PM instead of 10 AM. That would surely explain my woozy feeling, on top of 100 mcg fentanyl. I did remember to take today's AM steroids in my taper-down package.

Later today I spoke to the GelClair pharmacy tech. The Amazing & Wonderful Nurse Jacque ordered it for me and the tech called to arrange delivery. They will FedEx it to my hotel in DC. Such wonderful customer service!

On Sunday, when I spoke to both Dr G and on-call oncologist Dr Z, they both seemed to think I might have thrush, so Dr Z prescribed Nystatin, an oral rinse taken four times a day (after each meal and at bedtime). The Amazing & Wonderful Nurse Jacque told me today that's not as likely given my other side effects and recommended I stop the Nystatin now. She also suggested buying some Orajel to apply on the mouth sores with a Q-tip. Rik went to the pharmacy for me and I just tried it. AMAZING! I finally have some relief from pain in my mouth. I don't know how long it will last but this is such an improvement over five minutes ago....

Why am I calling The Amazing & Wonderful Nurse Jacque so AMAZING and WONDERFUL? Because she gave me her direct line, so I could call her if I really needed her. When I didn't understand why I was both hungry and nauseous an hour ago, I called her. She re-affirmed that the steroids made me very hungry. I wasn't eating a lot anyway, because of the painful mouth sores. And that hunger can indeed cause nausea. Then I carefully held the phone away from my head and vomited a small mess of everything I'd eaten during the past hour straight into the sink: ice cream and a cheese stick. The Amazing & Wonderful Nurse Jacque first asked me if I felt better (I did) and then told me not to eat ice cream. Dairy can contribute to nausea. Who knew?

So Jacque is now officially The Amazing & Wonderful Nurse. I tell her this all the time, Now it's official.

Sore skin

After the third of three doses of Abraxane (one cycle) on Monday, the port removal site hurt very seriously and so did my throat. Maybe a six on my personal one to ten scale?

Enough so that I hardly slept that night, even after taking three hydrocodone tabs. I thought maybe Rik had shared a cold with me since my throat felt scratchy. On Tuesday I waited for my afternoon appointments to get Neulasta and to see the wound care nurse. By then it still hurt a lot and with the nurse poking around it hurt even more. I took more hydrocodone after she finished, she called Dr G, and I went to see him.

Dr G ordered an xray to be sure the PICC line was still good, which evidently it is. He decided that all the sore skin, even in my throat, was due to Abraxane. It might be that I've finally had my personal maximum of taxanes. However, he was very excited about news from the American Society of Clinical Oncologists' conference and has a clinical trial in mind for me regarding microsatellite instability and doing a different genetic testing of my cancer. (There will be an article in the New England Journal of Medicine on this but he read an early online version on Monday. ASCO is amazing, Dr G is amazing, and I have no idea how he remembers it all. He didn't even know he would see me on Tuesday!) We also briefly discussed androgen receptor testing.

We've talked about Keytruda and Opdivo, the new drugs given to melanoma and colorectal patients with amazing success. They're related to treating microsatellite instability. It's a whole new world of medicine out there again!

In the meantime I put on a fentanyl patch for the pain, swished some GelClair and tried to gargle to reach the pain in the back of my throat. I didn't ask permission but did 'fess up to The Amazing & Wonderful Nurse Jacque. She can confer with Dr G and tell me to back off but it did hurt SO MUCH and now I feel better.

As Dr G has said from the beginning of our relationship, if I can hold on long enough there will always be something new coming down the road. Luckily for me, my indolent (i.e. lazy, slow-growing) cancer has given me almost thirteen years of life with metastatic disease.

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!

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.

---------------

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“.

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.

Port healing

Today I went to the Wound Healing Center at Swedish Hospital's Cherry Hill campus. I met a new doctor, Dr Myint and nurse Sally, who are caring, compassionate medical professionals. I know this because in addition to their warm personalities and ability to listen, Dr Myint complimented me on my "dream team" (his words) of other doctors. He knows them all: Dr Klein, my primary care doc; Dr G, my oncologist; and Dr Antezana, my dermatologist. He even knows Dr Flugstad, my orthopedist. I told Dr Myint and Sally they were now in excellent company as part of my team.

Sally removed the dressing that was applied last Friday and cleaned up the site. Both of them examined it and Sally took photos. Sally then measured the wound's depth while Dr M effectively distracted me in conversation. They tell me the wound appears to be healing nicely. Sally applied another dressing and I am scheduled to return for a dressing change again next week.

While they were all in the room with me (including a student nurse), I asked them to take a look at my scalp metastasis. This is the one which appeared to double in size during my first round of Ibrance, which Dr A biopsied and I have kept covered with his antibiotic gook. It got nicely pink in the last two weeks and appeared to be healing, but since the start of Ibrance round two, it's been oozing blood. Dr M of course recommended I talk with Dr G about it. He also opined that perhaps the oral antibiotics I've been taking may have had some positive effect. Sally then prepared a small dressing with medical-grade Manuka honey(!). What they use at the Swedish Wound Healing Center comes from New Zealand and is prepared in sterile environments. Although one can purchase Manuka honey for use in the home, as with any treatment, I believe in the involvement of your physician.

On my way out I stopped at the Ambulatory Infusion Center, where I received treatment for several years at the beginning of this dance with cancer. One of my favorite nurses was there and she did a significant double-take when she saw me. We hugged and decided to have a bigger personal reunion soon. It was so lovely to see her!

I have honey on my head, antibiotics in my system, a chance to reconnect with a friend and a port removal area packed with stuff. All appears well with my world!

Scan results

The results of my scans from earlier this week are a mixed bag. The CT of my chest, abdomen and pelvis shows stable disease throughout. The brain MRI shows some progression and four tiny, new mets. I have only taken Ibrance for one cycle (one month).

Dr G decided it would be best to leave Ibrance and get me back onto a taxane. My cancer seems to respond the best to this type of chemo. I've had four separate experiences with Abraxane! He has prescribed Taxotere (docetaxel), related to Abraxane and also a derivative of the Pacific Northwest yew tree. It has similar side effects as Abraxane but is given once every 21 days.

How will I receive this infusion, you ask, if my port has been removed? On Monday the chemo nurses will insert a PICC line:

A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition).

After treatment they can remove the PICC line while my port site heals up and gets ready for a new port-a-cath. If it's not fully healed in three weeks, I can always have a new PICC line started.

Now onto a chemo-free weekend!

Major Taxotere side effects

On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.

I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.

The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)

Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother.

Back to Taxotere side effects.

FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.

Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.

At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.

My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.


SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.

I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.

The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for),  eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!


SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.

It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.


And that Gilda quote I chose?

"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."

Low fever

It's been a week of low fever, constipation, diarrhea and general feeling poorly. I did too much on Tuesday after chemo Monday, which didn't help at all. I cancelled everything for today and barely had the energy to take Tylenol, eat and shower.

I'm off to the sofa to recline for the rest of the afternoon after spending most of the day in bed.

Coming up for air

This past week I've moved from the sofa to the bed with that same low fever and lack of energy. Even taking the dextroamphetamine three days in a row didn't help much. I'd take it at noon, feel better an hour later, try to run my errand, appointment etc., and still find it tough to put one foot in front of the other. I even gave my car a fender-bender in that terrible  Trader Joe's garage on Capital Hill. Then the uppers would kick in and I'd be awake until 2 AM.

Friday afternoon I wondered if I needed a blood transfusion, so we ran to see The Amazing & Wonderful Nurse Jacque for a blood draw. No transfusion needed, just feeling icky, but thanks to our friend T and the interconnectedness of Facebook, we ate a delicious salmon dinner last night. I even had a glass of rose!

Today I actually woke up feeing well-ish. Due to the uppers, I hadn't fallen asleep until two o'clock in the morning, so I stayed in bed until 11 AM, ate something and took my morning meds, sat outside in my pajamas and a blanket in the sun for an hour, then went back to bed until 3 PM. I wish I'd taken a selfie to post. Imagine me wrapped to my chin in a maroon blanket that's covered with dog hair.

D stopped by unexpectedly to visit and we chatted over tea for an hour. That's given me some extra oomph to make pizza for dinner before the TJ pizza dough died. Rik and I will enjoy pizza with mushrooms for dinner, another glass of rose, and have better expectations for Sunday.

Costco anyone?

Healing

I'm pleased I felt healthy enough to travel to Washington DC at the invitation of Susan G. Komen © for a breast cancer bloggers summit this past weekend.

On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.

The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.

The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.

I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.

When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.

My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.

I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.

My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.

And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.

More soon on the Komen © blogger summit later.

Following Holley Kitchen's example. Please share!

Following Holley Kitchen's example. Please share!

The latest treatment idea

I saw Dr G yesterday and we discussed a number of things.

My pneumonia is resolving. Yay! Evidently the pneumonia vaccine I received in 2013 didn't cover this strain, but it's too soon for me to receive another vaccine.

He had my tumor tested for the androgen receptor and the result came back positive. He'll contact Dr Julie Gralow, a local, renowned breast cancer expert, to review the result with her, and if she approves, I'll start bicalutamide (Casodex). Although this drug is usually given to men with prostate cancer, it might be effective for me.

Dr G also had my tumor tested for micro satellite instability. The results showed the tumor is stable, which you would think would be the "right" response. But this means the newest therapies might not work for me and I would not be eligible for such clinical trials. It might be worthwhile to re-test my tumor for ER/PR status. If it's changed to triple negative, which isn't too likely in my opinion, it might change my eligibility for said trials.

If Dr Gralow does not recommend bicalutamide, I will start Taxol in a little over two weeks (or, as Dr G puts it, after Tisha b'Av). I wouldn't say he's exactly superstitious, but it makes a certain kind of sense not to start new chemo during the lead up to a major Jewish fast day.

When cancer organizations get it totally wrong

It's worth reading about how Young Survival Coalition, Stupid Cancer and Fuck Cancer missed the message in their corporate partnership with Spencer.


An Open Letter to Young Survival Coalition

Posted on July 9, 2015 by Beth Caldwell

UPDATE July 10: YSC has taken down the Facebook post about this campaign, but Spencer Gifts is still listed as a sponsor on the YSC website. I haven’t received a response from them to this post yet.

Dear YSC:

I’m an under-40 woman living with metastatic breast cancer. I’m your demographic, the one your programs are designed to help. And you HAVE helped me–I even go to a support group for young metsters organized by a YSC volunteer. Which is why I think I’m the most disappointed in you, even more so than Stupid Cancer or F*ck Cancer, for being involved in this.

 
See what it says at the top of this? That’s right, it says “Boobies make me smile.” And of course it says it twice, because we all have two boobies. I see what you did there! Hahaha, how clever! 

Oh wait, no it’s not. It’s actually horribly offensive.
I don’t have two boobies. I only have one. They cut off the other one because it had an enormous tumor in it. And the most horrible part of that is, I’m STILL going to die of metastatic breast cancer.

There have been plenty of studies done about how the sexualization of breast cancer hurts breast cancer patients. First off, supposedly funny and edgy slogans like “save the tatas” and “boobies make me smile” trivialize a disease that kills 522,000 women and men worldwide every single year. The death toll in the US has been 40,000 per year for decades. How is the thing that kills those women supposed to be funny? How are those of us who will die of this disease supposed to feel about this joke?

Secondly, focusing on our disease originating in our breasts, rather than seeing us as whole people, dehumanizes us. And it makes women feel that if they have a mastectomy, they’re no longer worthwhile, or feminine, or real women. When I lost my breast, it almost broke me emotionally. Almost. This sort of campaign brings me right back to that feeling, and it does the same for many other women who have had their breasts amputated in a desperate attempt to save our lives–because our lives are what matter, not our breasts. 

Campaigns like this do real damage to breast cancer patients. And I know that you know this, because right next to where this image appears on the YSC Facebook page, you’ve got a video about how breast cancer surgery impacts women’s feelings of self-worth. 

I expect this kind of insensitivity from a porn industry executive trying to get some cheap publicity. But not from you, YSC. I expect you not to make women who have had a body part amputated feel worse about themselves. I expect you to know that this type of campaign is absolutely the worst kind of cause marketing. And yet, there is your logo at the bottom of the poster, and there’s this image proudly displayed on your Facebook page.

Speaking of your Facebook page, several of us pointed all of this out to you in comments on that photo there. Let me quote your complete non-apology here:

“We apologize if this post was offensive. We would like to clarify that the “Boobies Make Me Smile” slogan is not a YSC slogan, it is the name of Spencer’s Foundation. Our bracelet is called “Survivor Strength.” We partner with Spencer’s to promote breast health education among their young consumers and over the last 8 years have reached countless young women to empower them to be their own best health advocate. It is always our goal to inform and empower young women with breast cancer, and we’re sincerely sorry if this post was insensitive.”

If?!?! If this post was insensitive? If this post was offensive? It’s your goal to empower young women with breast cancer, while you trivialize their disease and marginalize those of us who have lost a body part to it? Really? And how is the fact that Spencer’s foundation is called “Boobies Make Me Smile” a reason not to be offended? You’re telling me that you actually decided to partner with an organization called “Boobies Make Me Smile?” Are you kidding me? 

I know you need money to support the important programs you run. We all understand that. But you undercut the power of those programs and the support you give to young women with breast cancer when you turn around and partner with an organization whose very name is offensive. How can we take you seriously after this? How can we believe that you really have our backs, when you turn around and throw us under the bus to make a quick buck?

I beg you, before further damage is done, to withdraw from your partnership with Spencer Gifts and give them their dirty money back. If you don’t, I know an awful lot of young women who will no longer be able to support you in good conscience, myself included.

Sincerely,

Beth Caldwell

Also picked up by huffington post.

Update from Dr G

Rik and I saw Dr G last week. He wants to retest my lungs with another CT to make sure my pneumonia has ended. Also I think he wants to me take a blood test for pneumonia markers. We even talked about the possibility of the pneumonia vaccine to prevent another month like this.

As far as treatment goes, we have several options --

• Pembrolizumab trial (If I qualify. Usually they want someone with fewer pre-treatments and bone-only mets.)
• Testing my tumor for micro satellite instability (this is the very newest treatment)
• Choice of chemo: Taxol (paclitaxel, which I had one time, a few years ago), Ixempra (ixabepilone), or Cytoxan (cyclophosphamide, which I had during my original early stage cancer 16 years ago)

He wants to incorporate neuroprotective medicines. I'm not sure which meds he means, but the idea is to prevent further neuropathy in my feet and hands.

Mouth pain

I've posted before about ONJ (osteonecrosis of the jaw), a rotten side effect of taking too many bisphosphonates to strengthen my bones over the years, or in my case, too much Xgeva.

For the past ten days I've experienced annoying pain in my ONJ spot of exposed bone on the roof of my mouth. I saw the dentist, and she wasn't sure what might cause that pain. She doesn't think I need another root canal. The ONJ spot hasn't changed in appearance. So Dr Amy spoke to Dr G and together they decided I should have a CT of my mandible (jaw).

I had the CT and it revealed -- NOTHING. No tumor, no new ONJ, no nothing. But I still have the pain. I changed pain meds from Vicodin to fentanyl patches left from earlier this year. The fentanyl made me woozy and high at first; I didn't really sleep last night. But today I'm not woozy and the pain is gone. I see Dr Amy again next week.

I hate to judge myself on what to take, but since I have the fentanyl on hand and Dr G had prescribed it, I'll take it. And it works!

My AHA moment

A week or so ago, I did a live interview for Mutual of Omaha. They run public service-type announcements on television featuring regular people talking about their "AHA Moment."

MofO seems to want their interviewees to articulate something amazing, challenging, or out of the ordinary that somehow affected our lives in a big way. The employees travel around the USA seeking speakers and also interviewing passers-by. There is one person to interview both random folks and those who are prepared; one person to run the camera; one person as a greeter; and the driver of the van.

I wrote earlier that Gilda's Club Seattle had invited their members to speak, and I said yes. It's a good thing too, because the other person who agreed woke up feeling unwell and Anna Gottlieb, the founder and executive director of GCS, rushed over to the Seattle Center to tell her AHA Moment about deciding to start a Gilda's Club here.

You can view my story here and Anna's here. Remember to turn up the volume!

If you like my little video (I got on my personal hobbyhorse about the government's lack of funding for advanced cancers), please feel free to share it with others.

To paraphrase from Anna, you too can pursue a dream against all odds, and make your dream come true.

Stress + anxiety = anxiety + stress

The past week has been filled with stress and anxiety, no matter how you look at it.

Gilda's Club Seattle asked, and I offered to give an interview when Mutual of Omaha's AHA Moment van was in Seattle on Tuesday. If you've not seen these commercials, check out the site. (I don't know when or if my interview will be broadcast, but will try to post if they tell me.)

At first I thought I'd talk about cancer. Then I thought I'd talk about my cousin E, who died last week at the age of 90+. I asked Rik to quickly email me a photo, since the email reminder said to bring something along. But they meant something to hold in my hand, not a digital image. Then I changed my mind again. Everyone has a loss to share. What would make E's death my AHA Moment more powerful than my living with metastatic cancer?

With Anna Gottlieb, founder and executive director of Gilda's Club Seattle

A gift from Mutual of Omaha - my very own clapboard

In the end I talked about my cancer, how long it had been in my life. Mostly I spoke about how my recent knowledge of the US government's lack of funding of all research into all metastatic cancers via the National Cancer Institute indicates how little the lives of our citizens seem to matter to our government. The interviewer didn't seem to care for this topic much, but I got very passionate about it. It was a bit of a stress-filled morning.

On Tuesday afternoon I saw my specialty dentist about the ache in my jaw and numbness in my chin. She took x-rays but nothing showed up, as nothing had shown up on the recent CT of the right side of my jaw. My anxiety continued to build, as this could mean anything from TMJ to increased activity in the BRONJ spot in my jaw, to more active brain mets. Or anything else. And it hurt to open my mouth and eat.

Thursday brought my weekly support group plus a visit with Dr G. The usual mixed bag of possibilities opened up yet again. Stress. Rik told Dr G he thinks I've been mixing up my conversation recently. I told Dr G about my issues with typos and not being able to think of the proper word in a sentence (I call this "my feeling stupid"). These symptoms, plus the mouth/jaw and chin pain, could indeed mean anything. Combined with the rise in my tumor markers, Dr G decided I should start Taxol within 24-48 hours, and schedule another brain MRI soon. I had a brain MRI on June 10th, which revealed nothing unusual. Dr G also said I should start raloxifine, an estrogen blocker which somehow I'd never had.

The terrible traffic for the stupid Seafair activities in town caused many of the patients scheduled before me to arrive late. Therefore we waited two and a half hours to see Dr G, spent an hour with him, walked over to the hospital to fill the scrip for raloxifine, and didn't get home until almost 7 pm.

More stress, more anxiety.

On Friday the Swedish Cancer Institute squeezed me in for my first dose of Taxol. I felt okay on Friday afternoon, but took a nap anyway. New drug, a nap is in order. I should get the Taxol once a week for three weeks, then take a week off. This lower dose also should be more tolerable.

On Saturday it was so very hot here that I took a five hour nap with the air conditioner. This was definitely the summer for such a purchase. I have a brain MRI scheduled for this week, as approved by my health insurance company. We'll see what that reveals. At least my jaw hurts less

Finally, today my dear friends D and C came over for brunch. While we were catching up with one another, I truly had an AHA moment: I realized that the stress and anxiety of the past week could easily have caused some of the symptoms I was so worried about. The typos, the conversational idiosyncrasies and worries about new pain might have all converged to cause me more worry and nervousness.

I actually have tolerated the Taxol very well so far, with minimal side effects except my naps. I hope this means that my trip to see my family on the east coast will come off as planned. Plus I hope this means less stress now that I have a plan. This who know me, know that I excel at planning.

Happy 13th metsiversary to me!

We were so ridiculously busy on my 13th mets anniversary that I didn't get to blog about it all yet.

I decided to hold a big party, and invited 87 people to attend. I didn't even realize I was that friendly with so many people! About 35 folks showed up, which is a great amount for our backyard to hold.

I strung some lights we normally only use in the sukkah, and put them along the deck railing the way my niece Dana did at my 5th metsiversary. Rik moved the heavy table and chairs off the deck and onto the grass. S and her daughter L pulled out all our folding chairs and gave them a wash and some, a scrub (which they desperately needed). They also pulled all the tomato plants off the plastic table and gave that a wash too. Such excellent helpers!

Rik arranged everything into an arc, put chairs around the tables. Someone moved the Radost bench out of its housing in our garage and put more chairs facing it. I found tablecloths and put out tea lights in holders. Sadly, it was cool and windy that evening and the candles blew out right away. Next time I'll listen to S and ask to borrow the battery-powered ones from Radost.

D brought her longer folding table and many friends squeezed the incredible amount of chocolate desserts which people brought for potluck. Thanks especially to G and D for bringing an enormous
cheese platter which all enjoyed. Yes J, I still have your delicious cheese which those foodies would have devoured in seconds.

There was also ice cream (even some Graeter's, my hometown favorite from Cincinnati, now in QFC stores here); wine; lemonade (in case it got hot - feh); fruit; you name it. Mostly chocolate thought. My friends know me well. And I sent food home with as many people as would take (don't worry R: I saved your cake for me!)

The dogs were wild. At least Bob had the sense to lie down in his crate after he barked at everyone. Boychik tried to eat all the chocolate and was a huge annoyance, but it was better to pat him away from the table than listen to him whine from somewhere in the house. I think.

A true highlight came when D and C said a few words of Torah. I had never thought to bring this part of Judaism to my celebrations before, but given that this was my cancer "bat mitzvah," it seemed appropriate. I had asked them to speak that night, and I've asked them if I may share their words on my blog. Update soon.

I said my thanks to all, to Dr G, and to the universe for giving me so many loving friends and family  and years to spend with them. I go t a little ferklemt (that means teary-eyed) and then I blew my annual Bronx cheer to cancer. Also known as a "raspberry," I had to teach some folks who weren't native New Yorkers. You can imagine the sound we made.

To top things off, we made a toast and G and W, who recently were in a production of Fiddler on the Roof, led us all in the famous song from that show "To Life! To Life! L'chaim!"

I try hard to only blow a Bronx cheer on August 20th. The rest of the year I say to my cancer, you can live with me but you have to behave. It hasn't been very "have" lately (more on that soon), but we're giving it the big meds to quiet things down. So far, so good.

Back to the party: D brought her tambura and K his violin and gave an impromptu concert. When D started to play Evo bank Cigane moj, I thought to myself "I know that song!" Of course I did - D let me sing it in a concert a few years ago, the Passover when I dislocated my left elbow. I just had to sing with them. Thankfully D had brought the words.

So there was music, dancing, and eating, hugging and kissing and laughter. In short, it was a fantastic way to celebrate 13 years of living with mets.

L'chaim to all of us -- until 120 years!  עד מאה ועשרים שנה‎; in Yiddish "Biz Hundret un Tsvantsig"