I went in to the clinic on Tuesday (as usual) and I received the results from my brain and spine MRIs.

1.  THE BRAIN MRI REFLECTS GOOD TREATMENT RESPONSE WITH A TINY RESIDUAL FOCUS LEFT BEHIND!!!!!  Everyone is very pleased with this result.

2.  The spine MRI reflects almost every other scan I've had done in the past two years.  There was nothing alarming about the report in that there was nothing new.  Lots of metastatic disease with complete bone marrow replacement in the lumbar and lower thoracic spine.

So why did it take so long to write about this?

I gained ten pounds in one week.  I had called in about this over the weekend, but the on-call doctor brushed my concerns off, saying that with cancer, it was to be expected.  When I got to the clinic on Tuesday, we found that he didn't leave any notes that I had called in.  The answering service had records, but nothing from the doctor himself.

I did not receive chemo due to the weight/water gain.  An emergency ultrasound was scheduled so that fluid could be drained.  Unfortunately, it was a rush and wait kind of day and by the time I had an ultrasound done, no one in interventional radiology was available to read it.  I was requested to come back on Wednesday.

On Wednesday, about halfway through my drive, I started to experience severe pain in my back.  I've felt the pain a couple of times before, but this was building in intensity.  I even cried while driving as the pain was quite bad.

I started the day with an appointment to get fluid drained from my abdomen.  With the ten pound weight gain, we expected a lot of fluid to be extracted, but believe it or not, there was none.  We were rather stunned.  I do have a lot of swelling in my legs, that probably explains a lot of things.

By the time I arrived at the infusion room, I was doubled over in pain.  It started in the back and moved to the front.  The back pain was more muscular and the front pain was more nerve related (a perfect horseshoe from front to back).  The nurse practitioner said that in all the years I've been going there that she's never seen me complain of pain and that she was sending me to the emergency room.  She moved me to a room with a bed, hoping I'd find relief laying down, but it wasn't to be so.  I tried to lay down on my side and an electrical bolt of nerve pain shot through my body so intensely that I screamed ... probably loud enough for the entire floor to hear me.  I was beside myself with pain.

I called Art and told him I would be unable to drive home.  While we were waiting for him to come up, they started giving me morphine every 30 minutes.  I responded well enough to sit upright, but I was still being sent to the ER for pain management and for a CT scan and MRI.  There was obviously something different happening in my body since Friday's scans.

A first for me ... an ambulance drove me to the ER.  This meant an immediate admittance and probably cut an hour off the wait time.

I got the CT scan, but with great difficulty as it was so painful to lay down.  The poor technician couldn't understand why I could remain flat for two minutes while we waiting for the nurse to come, but it was physically impossible for me to do so.  I had to stand beside the table until she got there, and then had to grit my teeth through the very fast CT scan.

Next up was the MRI.  A spine MRI takes an hour and I could not remain flat for that amount of time.  They kept giving me narcotics and they were not making a dent in the pain.  I either stood or walked the entire time I was waiting for the drugs to kick in.  When 9:00 rolled around, the decision was made to stop the drugs and admit me to the hospital.  I asked them if I could go home instead because I knew I'd possibly get more sleep at home than in a hospital.  They agreed, as long as I promised I would call in and come in the next day.

By the time I got home, all the drugs finally kicked in and I was able to sleep.  I actually slept about eight hours, which is always a good thing.  However, waking up was quite the painful ordeal.  This time, it was my legs that were in excruciating pain, with severe aches and with lots of buckling.  This is most likely due to all the walking and standing I did the day before.

A pain management plan had been put in place with my taking narcotics twice a day rather than just once.  That was already taking effect and my pain levels were much lower.

However, as promised, I called in and gave a report and the team requested that I come in right away. They were fearful of a fracture.  I wasn't  in the same pain I had the day before, so the trip was easier.  Art and I were immediately settled into a room and the MRI was ordered.  I was instantly started on some drugs and I fell asleep right away. I had the MRI and returned to the room to wait for the results.

The results are confusing.  There is no fracture and there is no spinal cord infringement.  There are no real answers, either.  In short, my spine is riddled with cancer and that cancer is triggering something resulting in extreme pain.

The current plan is to continue the pain management and go from there.  I can't drive for a while as I need to adjust to the heavy drugs.  I'm hoping that mid-week will be the magic point.  I have to wait until I can make it through a day without falling asleep without notice.

Thanks for the ongoing support and for being patient waiting for news.  It's not been an easy week at all, but hopefully, it will continue to improve.  My next appointments are on Tuesday.

On a side note ... I wrote an article that was published on Monday.  You can find it here: It's About Time MBC.

Please consider these organizations as recipients for your donations.  While they are primarily located in the San Francisco/San Jose area, two of them are national research groups and one is a teaching hospital in San Francisco who specializes in metastatic breast cancer.  Dr. Hope Rugo is my treating oncologist and she is one of the leading oncologists in the US.  She is highly sought after and her research is often ground-breaking.

The pink month of October is upon us. THINK BEFORE YOU PINK!!! When you consider buying a product with that ubiquitous pink ribbon, ask yourself the following questions:

1. Does any money from this purchase go to support breast cancer programs? How much?

2. What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?

3. Is there a “cap” on the amount the company will donate? Has this maximum donation already been met? Can you tell?

4. Does this purchase put you or someone you love at risk for exposure to toxins linked to breast cancer? What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

5. Is the product merely being sold to make money off of breast cancer? Anyone can slap a ribbon on an item and claim it's for "breast cancer awareness. Anyone can make a product pink and sell it in the name of "breast cancer." Don't fall for it. Do not buy a pink product just to "support" someone who has had or currently has breast cancer. Do not allow corporations to make money off the disease that is killing me.

If you cannot get the answers to these questions based on information on the product label, then walk away from it until you can find out.

 As American as apple pie, the rites and lights of Friday night high school football games reign supreme.  All across the nation, students of all ages and talents gather for this ritual.  Football players, cheer leaders, band members, parents, fans, friends ... the list goes on and on.  There's both joy and laughter to be found everywhere.  There are fundraisers that are held for various athletic booster clubs and most of those causes are carefully vetted.

Until October.  October brings on the pink socks, pink pom poms, pink towels, pink shoelaces, pink stripes and tons and tons of pink ribbons.  Breast cancer awareness month (BCAM) has invaded a sacred tower, but without the necessary scrutiny as to why all the pink is worn.

My daughter is a cheerleader at her high school and she has been a very vocal advocate against the use of pink in October.  Her constant question is:  "What good does it do?  What action do you want people to take?  How does wearing pink help people like my mother?"  She did put together a small program for last year, but unfortunately, the adults involved did not follow through.  This year, there are no home games in October, so no pink is involved anywhere.

One of her fellow cheerleaders expressed great dismay.  She really wanted to wear pink as she felt it was for a very good cause.  Rachel (my daughter), pressed the question to her again ... "Why?"

"Because it's a nice thing to do."

And, deep down, it is.  Symbolism is even stronger than Friday night lights.  I know that I will long be remembered as the "more than a ribbon lady" and I will be remembered for dying of breast cancer.  But I'd like to be remembered for far more than that.  Right now, I think my strongest symbolism is The Tree of Life.  Rooted in life, blooming in life, providing shelter and shade, The Tree of Life is a part of almost every culture on earth.  It is so much more meaningful than a little pink ribbon.

Explaining this to high schoolers (or even adults) is hard to do.  For the past thirty years, the pink ribbon has been tacked on to products as a "nice thing to do."  Shopping, wearing pink and walking races has made people feel as if they are actually doing something to help those with breast cancer.

But then, October comes and goes and the pink is put away for another year.

Something has happened this year, though.  October has come early.  It's mid-September and pink has taken over several teams (probably due to schedules) and BCAM has become front and center stage for some. 

In this particular case, this past Friday night was to honor a teacher who had just finished treatment for breast cancer and the principal and staff were celebrating her survivorship.  The teacher bears a "cancer look" with loss of hair and a Friday night lights in September took on new meaning.

My daughter's high school played against that high school.  One of our friends is the mascot for his school.  He's a very active part of the cheer squad and is well loved by all around him.  He is an integral part of Friday night lights.

Jeremy has Down Syndrome but doesn't let that slow him down.  Like any other high schooler, he struggles with time management because he wants to do it all.  Like all parents, our friends guide him and direct him just as my husband and I guide and direct our children.

On Friday night, Jeremy's cheer squad was bedecked in pink.  They were very excited to be wearing pink and to make announcements honoring the teacher who has breast cancer.  My daughter listened to these announcements and rolled her eyes.  She asked herself, "What good does this do?"

Jeremy's mother was not mentioned. She, too, has cancer, but she's not sure if many at the high school know it.  She doesn't have a "cancer look."  You can't tell she is undergoing treatment.  She doesn't have breast cancer.  She has advanced ovarian cancer ... and she even had chemotherapy on Friday before the game.

Jeremy couldn't understand why his mother's name wasn't being honored.   It's not that his mother wanted her name mentioned, but it was that a member of the sponsoring school's cheer leaders couldn't see past the pink to recognize that there are other cancers as well.  (September recognizes childhood cancers and ovarian cancer.  One of the very cancers for the month was right in front of these impressionable young women, but since the marketing machine hadn't made ovarian cancer a money-making behemoth, it was ignored.)

I saw Jeremy the next day.  I was wearing one of my "I want more than a pink ribbon" buttons on my jacket (It's always there.) and Jeremy told me about how his school had "cancer night" the night before but that his mother's name wasn't mentioned.  He feels that her honor is just as important as anyone else's.  (He really doesn't understand that his mom and I have two different cancers.)

But he's right.  Her honor and her symbolism is important.  She shouldn't be left out simply because her cancer didn't start in the "perky boobs" of making money.

This isn't to say that the school was wrong to support their teacher.  It's just to ask is pink necessary to do so?  Is not a simple announcement indicating their support enough?  How much money got spent on the socks, towels, and pom poms to show that support?  How many other parents/teachers/friends are not publicly acknowledged because their cancer is not "pretty in pink?"  It's all so very complicated.

Yes, all cancers are "equal" ... but someone forgot to tell the world.

"You shouldn't have commented or liked my last status. Hahaha! Now you have to pick from one of the below and post it as your status. This is the 2016 Breast Cancer Awareness game. Don't be a spoil sport. Pick your poison from one of these and post it as your status."

1 Diarrhea again?
2 Just used my boobs to get out of a speeding ticket
3 How do you get rid of foot fungus?
4 No toilet paper, goodbye socks
5 I think I'm in love with someone?
6 I've decided to stop wearing underwear
7 It's confirmed I'm going to be a mummy/daddy
8 Just won £900 on a scratchy
9 I've been accepted on master chef
10 I'm getting married
"Post with no explanations.
"Sorry, I fell for it too. Looking forward to your post. Ahhh don't ruin it. (Don't let the secret out). And remember it's all for the 2016 Breast Cancer Awareness....Be a good sport ok?...😂"
*************
Vickie here: This is the latest on the "Breast Cancer Awareness Games" that are sweeping Facebook. Here are some questions:
1. How does this raise "awareness" if everything is "secret?" Look at all those "Don't tell anyone what you're doing," "Don't ruin it," "Don't be a spoil sport." Secret activities do not raise awareness of any kind.
2. What is the call to action other than to laugh and keep a secret?
3. Many women with breast cancer have no breasts. How can they use them to get out of a speeding ticket?
4. Many women with breast cancer have chemo induced menopause and are unable to conceive. To use a statement of "confirmed in going to be a mummy " is both insensitive and cruel and shows an absolute lack of knowledge over what breast cancer can do to the human body.
5. Would these "games" be "funny" if they were about childhood cancer? Would anyone even dare to venture into that territory with these statements? Why are they good for breast cancer, but not for other cancers?
Real awareness goes far beyond knowing that breast cancer exists. Research into understanding why/how breast cancer spreads beyond the breast and kills is what's needed. Funding that research should not be based on buying a product that may or may not make a meaningful donation to real research (And not just a pretty pink ribbon of "awareness.").
Keep an eye on this space as I update where your dollars will make a difference. It's not in secret little games that infuriate those living and dying of this disease.

Drip, drip, drip
The IV continues to drip. 
Year in, year out, the life extending medicines enter my body in one form or another.
I am grateful.

But I just want to be home.

As time goes on, each treatment becomes a bit more harsh.
They take more time.
There are more "emergencies" that delay treatments.

The disease marches on.

I just want to be home.

My current infusions take about six hours.  There are lots of reasons for this and I understand them all. 

I just want to be home.

Yesterday I hit a mental wall.  I cried in the last half hour of treatment because I just wanted to be home. 

Yet, another 30 minutes of drip, drip, drip.

The man in the chair across from me had a severe, phlemy cough that scared me due to my own current breathing issues.

I just want to be home.

I want to be with my family and friends.  I want to sit with them in my nest and laugh with them.  I want to share a meal with them. I want to sit with my cat beside me.  I want to just simply be.

I just want to be home.

But when I got home, I was so uncomfortable and so agitated that I couldn't do any of that. 

I could only toss back and forth, trying to get comfortable.  Too hot, too cold, too full, starving yet unable to eat, bloated, stuck on the toilet, hidden away from my family. 

I just want to be home.

I don't know what all this means.  I did get a good night's sleep and I'm feeling much better.

Heavy drugs can mess with you.  Reactions are unpredictable.  Literally ... feeling well to feeling awful can happen very rapidly for me.  I called into the clinic to explain what was happening and they were glad I was home.

Me, too.  I'm glad to be home.

I typically plan a full day when I head up to San Francisco for treatments.  There are so many factors that can slow things down, especially if the day includes seeing the oncologist.  I know she takes time with each of her patients, so she is often late.  However, the wait is always worth it.

As you know, this has been a difficult summer.  Whole brain radiation took a lot out of me and the side effects just keep on coming.  Additionally, I have side effects from chemotherapy and side effects from support drugs.  I've lost weight in spite of eating and I'm struggling to keep my protein levels up and my glucose levels down.

Within the past two weeks, I've developed a cough that makes it hard to breathe.  I had an emergency CT scan today as it was suspected the cancer had moved to my lungs.  Fortunately, that wasn't the case and my lungs remain cancer free.  I am grateful.

However, there's definitely something happening and we don't know what it is.  There appears to be compression on lymph nodes that could impact breathing.  This could be a minor case of bronchitis.  This could be the beginning of pneumocystitis, an infection that hits folks with compromised immune systems.  I am now on a low dose antibiotic (one pill three times a week), as well as increased steroids to reduce inflammation.

The CT scan revealed progression in the liver and my liver is slightly more enlarged now (bloated).  I have random bouts of vomiting (happened this morning at the clinic with about 30 seconds warning!) because the liver is pressing on my stomach.  My chin is completely numb from neuropathy, as well as three fingers on each hand and both big toes.  The "dead" chin was enough for my oncologist to take me off my current chemotherapy.

I will return to San Francisco tomorrow for the new chemo.  For those who are counting, this is my tenth treatment regime in 4.5 years.  There's some degree of trepidation for me in this because historically speaking, one tends to be on treatments for less and less time as the routine goes on.  But then again there are many examples of good responses, even late in the game like this.  I am familiar with the new chemo (gemcitibine and cisplatin) and have heard good things about it.

One of the key people on my treatment team is Em.  She is the schedular and in spite of all the changes that happened today, she literally was right on top of them and got that CT scan on the books, lined up the radiologist to get the scan read and let the infusion center know that things were switching up.  Almost as soon as my oncologist said, "No chemo today, new chemo ASAP," Em had a new schedule going.  Additionally, she looked ahead through September to keep my original schedule as close to what we had in order to accommodate my family needs.  She is truly an amazing professional who has made it a point to come out from the back office to meet me.  She has even taken her break time to visit with me while I'm getting chemo!

I still have a month before we do a brain MRI.  I have mild symptoms that could be cancer activity or just side effects, so I'm trying not to second guess anything.

I'd say the biggest physical things I'm dealing with are breathing, fatigue and food.  I'm really hoping that the antibiotics and steroids kick in soon to help with the breathing.

Part of the food issue is the fact that everything tastes terrible.  Side effect of chemo!  I'm trying to listen to my body with the fatigue ... when it says, "sleep," then that's what I do ... I sleep.  When I have trouble sleeping, I do quiet activities.  I've gotten used to sleeping two or three hours at a time, regardless of what time of day it is.

The kids are in their third week of high school. Both are settling in well.  Rachel has a heavy class load, but balances that with one fewer class than most of her classmates.  She still enjoys her cheerleading.

Michael enjoys his classes as much as a 9th grader can and likes the flexibility of his classes.  I know he and Rachel enjoy walking to school together.  They are pretty amazing and are becoming quite independent.  Michael is now a part of a premier soccer league (something he's always dreamed of) and has a renewed interest in the sport.

Art continues to work hard to provide for us, but is also making time to spend with us at dinner and on weekends.  He and I continue to try to have a date night each weekend.

Writing is very painful for me due to nueropathy in my hands.  I'm unable to work on my Bible Writing Project for any length of time.  I'm reading along, though, where my writing left off ... a chapter of 1 Kings and a chapter of Psalms.  I used to hate the Psalms (I considered them to be quite whiney), but now that I'm in them, I can so very clearly see myself.  I think that's a true reflections of 2 Corinthians 4:16

"That is why we never give up. Though our bodies are dying, our inner strength in the Lord is growing every day."

Thank you for all you do.  I wish I could write thank you notes to everyone (My Southern roots are appalled that I haven't done so!), but I just don't have the energy.  Thank you for the meals, the gifts, the phone calls, the texts, the emails, the cards, but most of all, thank you for the love.  Thank you for showing up.

When you've lived with metastatic cancer for as long as I have, you tend to hear it all.  I've heard so many "miracle" cures that very little surprises me anymore.  Generally, I don't get emotionally invested ... to each their own ... but at at times, a story that breaks my heart crosses my feed.  This is such a story.

Don't get me wrong ... conventional treatments are not easy.  They have rotten side effects and can easily steal weeks of your already shortened life.  However, I will always stand by the fact that these treatments are the best we have for now and that we've come a long way from even 20 years ago.  We still have a long ways to go.

The beauty of conventional medicine is that it's been stared at, examined, analyzed and inspected for FAILURE long before its success is identified.  Researchers want to know what can go wrong with a treatment in order for it to be considered for use in the human body.  Clinical trials consist of three phases (all of which have different components to them) and the idea that a cure is being hidden due to money made by treatments is just ridiculous.  It is incredibly expensive to bring a treatment to general use and it takes a long time for a company to regain even the slightest profits on these drugs.

This article goes into ten reasons why it would be impossible to hide a cure like many conspiracy theorists postulate.  You can find an older article here. It's written from a researcher's point of view.

Proponents of "alternative" treatments often say buzz words like "all natural," "no side effects," "secret cure the government doesn't want you to know about," etc, etc.  This is why the story I referenced above simply appalled me on every level.

This is pretty much a laundry list of the most common "alternative" treatments available ... in Mexico ... because none of them have withstood the test of FAILURE.  There's tons of testimonials about successes, but no trials, not longevity of study and certainly, no scientific evidence to solidly back up these claims.  (A few people may have had success, but the vast majority have not.)  It's almost the equivalent of giving over a dozen "treatments" at once.

The whole idea of coffee enemas ... five a day?  Isn't that eliminating the supposed "benefit" of 13 juices a day?  Why put juice in only to remove it right away?  Our colons are NOT designed to have so many enemas and the damage will soon be seen.

When conventional treatments are recommended, the medical team is usually careful to go over side effects and benefits.  I know I've asked to see the studies and statistics for all my treatments and because they are so detailed, I'm generally pretty confident that I can trust the information provided.  I know there are exceptions, but generally speaking, there is truth in what my team tells me.

The disclaimer above?  (I won't advertise for this clinic.) It does nothing of the kind.  In fact, it pretty much says, "We don't guarantee anything, and we only go by word of mouth."  (Testimonials are NOT the same thing as clinical trials.)

On July 5, I read this update:

I gasped aloud when I read this.  I literally said, "She is dying now.  They are killing her." I've had parasites before from living in the Far East ... they do not take a year to show up.  Dying cancer cells do not cause anemia or low platelets.  Living cancer cells do. This woman was blatantly lied to by the "board certified team of doctors under the leadership three brilliant and passionate Americans who have all taken cancer treatment to another level, and are changing the medical industry and the world."  THESE doctors are the ones who should be challenged in what they are doing in the name of making money.

I don't know this woman or her family.  I do know she is the second patient I had read of going to this clinic within a month's time frame.  The first woman died with a week of returning home and this woman died the night of July 5, the same day this above post was written.  There will be no testimonial on her behalf.

Nothing could have saved them. (Both women had metastatic breast cancer, same as me.)  They were dying anyway and conventional treatment failed them.  We need so much more.  My heart breaks though, that they chose to die thousands of miles away from home without a full support network in place.  They both chose to be away from their children.  Their families both continue to say this was the right medical choice for them (Note, no medicine involved.) and that if they had done this from the beginning, their loved ones would still be with them. 

Therein lies the fraud.  Clinics such as these ARE truly about the money and they take heartless advantage of people literally gasping for their last breath.  Tens of thousands of dollars are needed for these clinics (who can't even maintain clean water) and when someone dies, more tens of thousands of dollars are needed to transport bodies home.

I'm angry and I'm bitter.  I know that what we have isn't enough.  However, snakeoil is not the answer.

It's not the same as hanging out on the beach in Hawaii, but it will do.

I just got back on Saturday night from a delightful week's vacation in Maui.  I had Sunday off, but then spent two days at the cancer center.  One day was for scans of the chest/abdomen/pelvis and the second day was for results, blood work and chemo.  Treatment cannot proceed until the oncologist reviews everything and signs off on the plan. 

First things first ... my scans show no new cancer in my liver and stability in the bones.  I am tolerating this chemo (Abraxane) well and we will continue this treatment.

There were many things discussed, but I won't go into all the details here.  However, one of the things that came up is the fact that I've lost 25 pounds since starting this chemo.  I haven't been trying to lose weight ... overall, I think I eat a lot, but then again, food doesn't taste that good, so maybe I don't eat as much as I think I do.  My doctor suggested that I eat more calorie dense foods (peanut butter on crackers as snacks or a bowl of ice cream before bed).  I don't think she imagined I would come home after a very long day and simply eat a big bowl of radish and cucumber salad with homemade dressing, along with two ears of corn on the cob.  I was craving these foods and they made me happy.  They just aren't calorie rich.

I'm having difficulty with styes on both eyes but hopefully, they will clear up soon.  Same goes for the reduced hearing in one ear.

I am still recovering from side effects of whole brain radiation.  I will wean off the steroids (I'm on a low dose anyway) which may help out with those as well.  I get tired easily and need to take naps, but I've always said, "Sleep is good!"

I will have a brain MRI towards the end of September to review what's happening there.  God willing, I will be a good responder and all eight of the tumors will be gone.  Long time to wait, though!

It was a long day today, but not a bad one.  In fact, I'm rather satisfied with the gift of no progression and I will enjoy it again tomorrow.

Thanks for being with me.

#TreatmentTuesday #ResearchNotRibbons #iwantmorethanapinkribbon