September 18, 2017

Surgery today!!

Journal entry by Abigail Johnston — 

Hysterectomy is at 10 am today and we have to be at the hospital by 7. Bloodwork on Friday showed low white blood cells, so I had a shot on Friday and Saturday to boost those. They’ll check again this morning to make sure that the surgery can go forward. The weekend was pretty miserable from the bone pain associated with the the shots (stimulating my marrow to create more white blood cells is painful!!) and the bowel prep (more than a weeks worth of laxatives).

Thank you to everyone who has checked in on me and who will be praying this morning!!

Day #3, San Antonio Breast Cancer Symposium, 2018

New Friends, new information, new goals, new experiences.  On this my third and last day of the 2018 San Antonio Breast Cancer Symposium, I am thankful and exhausted.  For this introvert, being up and personable for all that time can be difficult!  But, it was all worth it.  I had the most lovely time sharing a room with my new best friend, Elaine.

Throughout the three days  have spent in San Antonio, I met amazing people.  Survivors, thrivers, doctors, researchers, and a few drug company reps (just a few–like insurance companies, I’m still not comfortable with Pharma).  I learned so much–there are two trials I am going to talk to my medical oncologist about when I get back.  They might not be a good fit for me now, but the medication in development just might be significant for me and others with my breast cancer subtype.  There is a particular medication that might, just might “close the door” on my cancer’s ability to mutate, a near surety for those of us with hormone positive cancer.

There has been progress of a sort.  I am still in awe of all the men and women who work every day, knowing that they will lose the battle most of the time.  I am in awe of those men and women who put their lives on the line to participate in trials so that the rest of us would benefit.

Is that progress enough?

I don’t think that anyone would in this arena would say yes. Everyone I talked to acknowledged that we have so much more work to do, that there is so much that we don’t know, that the mortality rate is still too high.  No one is more invested in this process than those of us who will die soon without more medication.

It’s hard to be so dependent on people I don’t know and will likely never really meet.

And I think that’s the biggest cause of angst for me. The lack of control.  The lack of knowledge.  The lack of ability to make any discernible difference. The lack of something to “do” to fix what is wrong with my cells.  The lack of a culprit or target.

The loss of dreams.  The loss of purpose. The loss of a future.

I’m not trying to be dramatic about this.  Finding out that you will die soon, but not now and who knows when is a rock your world kind of moment.  For those of us who are type “A” and used to doing something, solving problems, being a force of change, it is agonizing.

Do I feel better after finding out more of the process and meeting the people I met this weekend?  Marginally.  I can see and identify the places where I might be able to fit into the puzzle that could possibly make up the solutions that could save my life.  There is a push to bring patient advocates into the conversation, to listen to us about our experiences and address the quality of life issues we are bringing to the table.  I am thankful for that push, for all the advocates who work so hard to bring these issues to the attention of the people who make decisions.

For today, I am happy to be traveling home to my husband and kiddos.  I’ll get to love on my nieces this weekend and keep on living the life we’ve made for ourselves.  Next week, it’s back to work and back to advocacy and back to doing the best I can.

Day #2, San Antonio Breast Cancer Symposium, 2018

I’m still attempting to process all of the information I learned today.  The day started early at 7:00 a.m. and I am just finishing up for the night as I type, nearly 8:00 p.m.  It’s CST here in San Antonio, so that’s probably messing with my biological clock a bit.  I’m also feeling my “introverted-ness” after all of the networking and socializing all day.

There are some extremely bright and amazing people working on so very many aspects of breast cancer.  So much of today has astonished and impacted me as I sat through hours of presentations.  I had the opportunity to talk to a really empathetic woman whose job is to liaise between patients and FDA employees.  I met researchers who have spent their entire careers focused on breast cancer research; their entire careers, failing more than they have succeeded and yet getting up every day to work on it again.

A moment that affected me far more than I expected was when a researcher was presenting her findings and talked about how her study was a success because it improved the survival rate by ten (10) months.  TEN MONTHS.  While I do get that that is statistically significant, all I could think about was that it is not enough.   I had a moment where I was aghast that this person thought this was a success.  And then I set aside my emotions, reminded myself who her audience is and I calmed down.

The topic of needing more time was one of the subjects of our METup demonstration today–we want years, decades, not months.  In many of the pictures posted on the METup facebook page, I was talking, so the picture pinned to this blog post might be one of the only ones where I was doing what I was supposed to.

I unexpectedly ran into my own medical oncologist today.  Dr. Grace Wang at the Miami Cancer Institute is the very definition of a life-long learner.  She knows her stuff and she never stops researching and looking for solutions.  I’m sure she’s not always happy about the information I bombard her with regularly, but she tolerates my enthusiasm with graciousness that I likely don’t deserve.  She told me today that she spoke with some drug companies about trials that she thinks might be relevant for me. I honestly can’t wait to see her next to discuss specifics.  One, in particular, looks pretty amazing to me and was described by the researcher as “closing the door” on the possibility of the subtype of cancer that I have becoming resistant to the medication that is supposed to be killing it.  (https://www.deciphera.com/pipeline/rebastinib/).

My list of questions is growing and I know that I will be following up with many of the patient advocates and researchers I met today.  I met several other women who have young children and are dealing with metastatic disease.  This “tribe” of women I have been initiated into is varied and diverse and haunting and poignant.  I’ve never experienced the kinship created from a shared experience quite like this before.

Day #1, San Antonio Breast Cancer Symposium, 2018

Two planes and a time change; four (4) different people to help with me with my bag; at least a mile walked in three different airports, and I landed in San Antonio, Texas Tuesday afternoon.  The high is in the high 50s/low 60s and that’s COLD for this Florida girl.  This is is my first foray into the technical world of breast cancer research and my head is reeling from all the details and specifics.  I am thankful for a basic working knowledge of biology and chemistry, but let’s face it, that was more than 20 years ago.

The main point I left the day with is that our bodies are amazing.  As the Pslamist said “I am fearfully and wonderfully made” (Ps. 139:14).  There are so many amazing things about our bodies that doctors are learning but there is still so much more to learn.  Everything in our bodies is in such a delicate equilibrium that to change one thing can be catastrophic or a salvation.

Will cancer be cured by 2020? or by any year for that matter?

Based on what I’ve learned today, there are many promising ideas, but I had no idea how many promising ideas turn out to be therapeutically unworkable.  For instance, there is a class of drugs that work amazingly well in mice to address the PIKC3A mutation (one of mine) but in human trials, the toxicity is intense and causes all kinds of issues.  One group of women developed diabetes.

Those women are heros in my book.

Anyone who takes a chance on a clinical trial is a hero.

The research process is so highly technical and precise and specific that so many different projects are needed to investigate so many individual questions.  Research builds on other research and researchers collaborate over many different things.  This is good, but wow, does it progress slowly.

There are breakthroughs–for instance, the drug I’m taking now (Ibrance) was only approved by the FDA in 2015.  That class of drugs, called CDK4/6 inhibitors, are still the best treatment for many women right now.

BUT

The death toll in the US for stage IV metastatic breast cancer is actually rising.  113 a day in 2017 and 114 per day in 2018.

Maybe part of that is because the rate of reoccurance in early stage breast cancer patients is holding steady at 30%.  The infographic attached to this post is startling and sad.  So many women who think that the nightmare is over, that they had cancer and beat it face the significant risk of reoccurance and no one is talking about it.

It’s scary, yes, but it is the reality.

So, after one day of cramming my head full of knowledge and filling pages and pages of notes that I can barely read, I don’t know that I am smarter, but I am more appreciative of the men and women who work hard every day to figure out the complex puzzle that is cancer. The amount of failures and defeats these researchers face daily is daunting, yet they don’t give up.

I’m thankful for that.

From September 11, 2017

Wind rain and lightning!!

Journal entry by Abigail Johnston — 

Irma was quite the storm and despite traveling over land for many miles before it reached us, it was still around a category one at our house. Glad it hit at night so the kiddos slept through it. Thankful we live in a newer neighborhood where the power lines are buried — we didn’t lose power!! A good reminder that there are other concerns in the world outside of my medical treatment.

Surgery has been rescheduled for next Monday, the 18th, so will be prepping all over again this week. Nothing much on the calendar since this week was supposed to be recovery from surgery so plenty of time to get the house back to normal after the storm. Boys will probably be out of school for a few days so we’ll be enjoying family time too.

Love to all you Floridians weathering the storm aftermath. We have AC if you need a cool spot as well as wifi.

From August 31, 2017

Hysterectomy oophorectomy hysterectomy

Journal entry by Abigail Johnston — 

I went to my preop appointment today with the gyn oncology surgeon and plans have changed yet again!! I respect his process but he keeps changing his mind … as far as I understand it, since I did test positive for the ATM genetic mutation, he now definitely wants to do a full hysterectomy. Means longer recovery time but ironically less invasive. Weird. I’m all for removing body parts that are more likely to develop cancer and told him so in the first appointment. Those parts did their job and housed and fed my two boys for the appropriate gestational period and setting them loose is fine by me. There was a bit of a kerfuffel about the medication I’m currently on because it reduces white blood cells. The doctors conferred and I’ll be temporarily stopping the Ibrance for the week before surgery. Then they sent me to the outpatient lab to do a chest X-ray and ekg. The hour or so I planned for the appointment turned into around 4 because of all the waiting in various places. Everything looks good so far for the surgery to happen on 9/11. It is currently set for 7:05 am.

In other news, today was the last day of the lease for the firm and we’re officially done with that space. I spent some time grieving that ending today in the midst of all the medical stuff. That office has seen so much … there are still marks on the back of my office door where Liam forgot that markers are only for paper. There’s a spot on the floor where a drink the boys brought in spilled all over my desk and floor — pretty sure they were fighting over it when it exploded. There are marks on the wall where family pictures and diplomas and certificates hung in my office and others. So many memories. So many clients and employees. So many colleagues and friends. Some bad memories. Betrayal and hurt. It’s such a mixed bag and I know I’ll be processing for a while. But, for now, the mess that’s in my house of the things we could not give or throw away will occupy my attention for a while. I’m still amazed at the amount of stuff we collected over the last 5 years and that doesn’t take into account the many bags of shredding I filled over the last few weeks.

Lots of prep for the surgery next week. Bloodwork and the PET scan and some downtime. I’ve been cleared for massages and will start some acupuncture. Doing whatever I can to keep my body working. Holding onto the good news from the orthopedic doctor this week that the medicine is working and my bones are filling in the holes left by the dead cancer cells.

From August 28, 2017

Discharged

Journal entry by Abigail Johnston — 

From ongoing care with my Orthopaedic surgeon. Great news is that the right femur bone where there was the 5 cm tumor is showing remodeling (meaning the bone is replacing the cancer). Weird to see the hardware inside my bones and the screws securing the rods but thankful that with the rods I can walk and am not worried about a fracture.