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

It's been 27 years since my mother died of metastatic breast cancer.  Unfortunately, times being what they were, her death is recorded as a lung cancer statistic because the coroner didn't understand that breast cancer that spread to the lungs was still breast cancer and not otherwise. 

The number of those who died of metastatic breast cancer in the United States in 1989 was 43,000. 

There are fancy ways of manipulating statistics based on total populations, incidence rates, mortality rates, etc., but when it comes down to brass tacks, we're still losing roughly the same number of people every year in the United States alone. 

The number of those who died of metastatic breast cancer in the United States in 2015 is 40,290.  Neither of these numbers include the men who have died of this disease.

Are these numbers anything to be proud of?  The statistics would say that there has been a significant decrease in deaths, but the hard, real numbers indicate otherwise.

I've lived more than half my life without my mother.  Yes, the pain is gone, but there are places deep within me that truly miss her.  I wish for many things, but I've learned to place wishes in a pretty little jar and to place them on a shelf.

My mother was diagnosed with breast cancer in June 1988.  She died on July 2, 1989.  I don't know much of her disease.  In fact, I know nothing.  One of these days, I will probably try to find her medical records on microfiche, but I have no idea if that's even possible after all this time.

I do know that I thought I knew a lot about breast cancer based on my mother's experience.  I knew nothing.  Absolutely nothing.

I was diagnosed with breast cancer in January 2012.  I'm still here after 4.5 years, whereas my mother had only 13 months.  We do have better treatments available to us, but they are not cures.  Those treatments merely slow down the disease, not stop it.

In July 2012, I returned to the United States from China to continue what we thought would be primary treatment and then be done.  Didn't happen that way.  In January 2013, it was definitively known that I had metastatic disease throughout my spine, hips and rib.  My original diagnosis was revised to Stage IV.

In July 2014, I had progression to my liver which resulted in change of treatments.

In July 2015, I had more progression to more bones which resulted in a long period of changing treatments to find the one the cancer may respond to.  More radiation treatments to prevent a fracture in my left hip took center stage for the summer.

In June 2016, the cancer spread to my brain.  Whole brain radiation, suspension of chemo until after radiation and a wonder about next summer and what it may bring.

I keep reading about the number of outstanding responders and how many of those with metastatic disease are living longer and longer these days.  In some respects, this is true, but the fact remains:

MORE PEOPLE DIE OF METASTATIC DISEASE EACH YEAR THAN THOSE WHO ARE LIVING EXTENDED LIVES WITH THE SAME DISEASE.  WE CANNOT REST ON THE LAURELS OF THOSE WHO LIVE LONGER.

We cannot be content with crumbs.  Yes, I'm grateful for the available treatments that are extending my life.  However, I'd much rather my life be physically saved.  Living from treatment to treatment, from year to year, just doesn't really cut it.  While no one can really say they will be here in the future, I'd like a bit more assurance that I will be at my daughter's high school graduation in 2018 and my son's high school graduation in 2020.  Right now, I have absolutely zero confidence that either date will happen. 

27 years.  A long time.  Way too long without significant research into the mechanics of metastatic disease.  Ribbons didn't save my mother.  Ribbons won't save me.  No more ribbons. 

I want more mothers living long enough to watch their daughters get married and have children.   I want more women living long enough to achieve their dreams.  I want more men to understand this isn't just a women's disease.  I want metastatic patients to sit at the table with researchers to discuss what we really want. 

We want more than treatments to extend our lives.  

We want a cure.