Our Health Care System is Broken

I understood this from an objective perspective prior to my terminal diagnosis with Stage IV metastatic breast cancer. I have fought with insurance companies for decades as a lawyer and hearing that the system needs to be fixed in some or a lot of ways is not entirely unknown to me as a concept. There is, however, a large discrepancy between knowing something and experiencing it. In other words, fighting on behalf of a client is far different from self-advocacy.

Case on point, my newest prescription, Piqray.

Some of you may remember that I had a PET scan on August 2nd. On Monday, August 5th, I learned from my medical oncologist that I was experiencing progression. She labeled the progression as mild since I “only” have two new lesions in my bones and there is still no organ involvement. We decided, during that appointment that I would start Piqray and Faslodex as soon as possible. She submitted the prescriptions electronically while my husband and I sat in front of her.

It is difficult to describe the amount of anxiety that follows the news that cancer is growing unchecked, that the medication is no longer working.

It is extremely difficult to describe the amount of anxiety that follows the news that you must start a new medication, with new side effects.

I waited a few days before following up. My insurance company didn’t have the prescription for consideration, but I was trying very hard to be patient, which is decidedly not in my wheelhouse. When I called and emailed my doctor on Friday, the 9th, I was finally told that the prescription never made it to the pharmacy. My medical oncologist is in the same building as the pharmacy and they use the same computer system. I’d thought that would help. Nope.

Despite the fact that my medical oncologist’s office knew that the pharmacy didn’t have the prescription, no one walked the prescription to the pharmacy (a distant journey on the same floor of about 2 minutes) until Monday morning, the 12th. When I called to find out the status, I asked for the required internal review to be expedited.

I called the following day, I was told it was processing and there was still no communication to my insurance company.

Wednesday, I had finally run out of patience. When the first person to answer the phone at the pharmacy had a snarky attitude, I insisted on being transferred to the person actually in charge of getting medication approved. There, I found out that not only was the internal review not expedited, they then called the wrong insurance company.

Um, what?!

I literally was bouncing back between my insurance company and the pharmacy all day. The people in the call center that kept answering my calls started saying that they recognized my voice. When the pharmacy finally got everything sent to the right place, I sat on the phone with the review team at my insurance company while they approved the medication. It took 5 minutes, if that, once they had everything from my doctor.

At the end of the day, my medication was ready for pickup on Thursday, the 15th, and I was ready to start when I received my chemo training, but I literally spent approximately 5 hours on the phone Wednesday (that doesn’t count all the calls and emails in other days) to make it happen.

5 hours at my hourly rate while I was working most recently as a lawyer comes out to $1,875.00. Think they would pay if I sent a bill?!

As a patient, I do not think that is ok. As a patient, the amount of stress and anxiety this caused is unconscionable. We are told over and over to reduce stress, that cancer is fed by stress and the byproducts of its affect on the body. And yet, the very people who are assisting me with fighting the cancer cause extra stress.

Oh, but it does get better …

On Friday, I had my scheduled chemo education and the first Faslodex shots. I spent nearly the entire day at the cancer center and learned literally nothing new. A nurse practitioner literally read the drug insert to me and when I asked knowledgeable questions because I’ve been doing A LOT of research, she either gave us answers we knew to be wrong or she didn’t know. For instance, diet is a huge issue with my new drug and she said to simply avoid processed sugar. I spent hours and my insurance company paid hundreds of dollars for that. Then, I learned that the modus operandi at the infusion center is to de-thaw the Faslodex shots (which takes 30-45 minutes) only after one physically checks in at the infusion center. I’d been in the building for hours and checked in when I arrived but didn’t go all the way up to the infusion center. If they’d taken the shots out when I arrived, I wouldn’t have had. I’m working on a solution for this, but as I explained to anyone who would listen, if I have an appointment at a certain time, I actually expect that I will be seen at that time. Crazy, I know, but I do have other things to do and wasting that much time three times this month!? Oh, hell no.

The health care system in our country is broken. I have private insurance, so everyone working with me has to appease a for profit company, a company that is looking to deny claims in order to turn more profit. My insurance company has only had the temerity to deny one thing last year (this is one thing denied in the two years since my initial diagnosis). They’ve not attempted to deny anything else, but that is always something to be concerned about, to be ready for.

Why?

Why should anyone struggling with a terminal illness have to deal with that? Why should anyone have to worry or budget for medical bills that should be covered by insurance?

Why?

Yes, I’m going to get my medicine. Yes, we are hopeful that this medicine will give me more time. Yes, alls well that ends well.

No, it should not have come to this. No, patients should not bear the burden of fighting with the very people who are supposed to care for us.

Our health care system is broken and it needs to be fixed, before it kills those of us it is supposed to be helping.

On the Night Before School Starts, 2019

My boys go back to school tomorrow, returning to the same elementary school they attended last school year. My eldest, he’s 6, is in first grade. He will be, for the first time, in a gifted classroom. My younger son, he’s 4, returns as a role model in the LEAP classroom at the same elementary school. My younger son has the same teacher but my older son will have a new teacher.

When I was a kid, since we were homeschooled, there was not as much of a build up. We spent all day at home during the summer too, outside of other activities, so not as much changed when we started the new school year. By high school and beyond, the start of school was more about the new work to me and was less about excitement.

I do have to note my obsession for and love of school supplies. The smell of freshly sharpened pencils, clean new notebooks, flags, highlighters …. I’ve been doing better with my hoarding tendencies since we have smaller space, but it’s so easy to justify expenses when they can be used all year. 😉

Watching the boys get ready for school and assisting as part of the PTA on the teacher/adult side, is a really fun new experience. Their excitement to see friends and to get back into a familiar routine is contagious. The adults are also looking forward to the kiddos having a routine as well.

We did a pretty good job, I think, of keeping them busy and also keeping them interested all summer. They did swim camp, science camp and rounded out the summer at Zaniac’s, the elder in Minecraft camp, which he said he would now like to attend year round, and beginning coding for the little guy–by the end of the week, he was doing pretty amazing things.

I have so many hopes and dreams for these boys and for this school year. We love their school and the community we’ve found there. We love the friends the boys have made and the families that we have connected with.

It’s gonna be a spectacular school year!!

Twas the Night Before School Started

Twas the night before school started
when all through the town
the parents were cheering
it was a riotous sound.

By eight the kids were washed
and tucked into bed
when memories of homework
filled them with dread.

New pencils, new folders, new notebooks too,
new teachers, new friends, the anxiety grew.
The parents just giggled when they heard of this fright
and shouted upstairs-GO TO BED-IT’S A SCHOOL NIGHT! 

 Author: unknown

Book Review: And it was Beautiful

I recently discovered the books written by Kara Tippetts, a metster like me, who passed away in March of 2015. Like many of us, she began blogging while writing one of her other books (there are three) and her last book, “And it was Beautiful”, is a compilation of her blog posts while going through treatment for stage IV metastatic breast cancer. She was a wife, a mother, and she worked through her feelings on dying young, on leaving her children motherless and her husband a widower in her posts.

Kara takes the mundane, the routine, the detritus of parenting and life activities and finds the grace, finds the beautiful and celebrates time with her family. As a mother who has gone before me in this struggle to integrate life and faith and living while dying, her book feels like she was talking directly to me. Since I know that’s not logically possible, this is perhaps the genius in her writing, that her thoughts and feelings resonate across time and distance. Kara is, after all, simply recording the cries of her heart and soul.

She also called the machines that we regularly see for MRIs, PET scans, CT scans, etc., “scary snorts.” I love this so much that I am going to start using this terminology going forward. This will be my homage to her.

Knowing the outcome of Kara’s treatment and that her words are being received posthumously gives a certain weight and poignance to her efforts. Maybe that’s part of the resonance of her books. She was here, she made her mark, and left behind a husband and children and a community that learned from her life. I count myself as part of her community now, who grieves with those who lost her and who looks to her example. She wasn’t perfect, but she was courageous enough to leave her words, the words written from her heart, to guide the rest of us.

I count myself lucky to have stumbled upon her writing.

Finding your TRIBE

We’ve all heard the saying “it takes a village” when applied to child-rearing.  I would submit that this same idea applies to life and, particularly, dealing with a terminal illness.  Now, as an introvert, I subscribe to the onion theory of relationships, i.e., the closer anyone gets in a relationship to me, the smaller the circle.  When I was diagnosed, I had that onion pretty well established, but I realized very quickly that I needed to create a new category.  Reaching out for support to strangers creates a great deal of anxiety internally for me, so that was not easy.

One thing I’ve learned over and over in the two years I’ve been living with Stage IV metastatic breast cancer is that having a group of supportive metastatic men and women to turn to is not just a helpful thing, it’s a necessity.  When I encountered issues with women diagnosed with early stage breast cancer, it was the ladies in my metastatic group that helped me sort through how I was feeling.  When I run into barriers to seeking medical care or when I’m researching something new or novel, I turn to those metastatic patient advocates that I know and trust.

Finding a supportive group of people hasn’t always been easy.   I’m online a lot now and I’ve found that online support groups fit the best into my schedule.  Having two little boys means that traditional support groups that meet in the evening just doesn’t work for me right now.  Plus going to a meeting to talk about such personal stuff gives me the willies.  I can write posts online or lurk in a group until I figure out the lay of the land; that fits my personality better.

Yet, there are so many online groups and not all of them are productive for everyone.  For instance, I’m a person of faith, but since that’s always been more of a private part of my life, it is a turn off for me when there are people who are posting lengthy religious comments.  Personal quirk of mine.  Another example is that I integrate both Western and Eastern medicine in my care.  I’m pretty open to try a lot of things, but I pull what makes sense for me from both camps.  It seems that most people are in one camp or the other and feel that their way is right.  I get that, but I still have to do what makes sense for me.  There is no one size fits all with cancer treatment or the cancer experience, yet some people want to make it so.  It’s just not.

With all of my quirks and what makes me me, it hasn’t always been easy to find my place and sometimes that place changes, but I think I’ve started to find my tribe, to find the group of men and women who are supportive and get me.   What I really do know for sure is that everyone needs that village, everyone needs that tribe.  Doing life with a terminal illness is not for the faint of heart and we all need support.

11 years, Together and Still Counting

Eleven (11) years ago, on August 9, 2008, Elliot and I got married.  We’d known each other for approximately two (2) years when we got married, so we’ve known one another for about thirteen (13) years.  Sometimes that feels like yesterday and sometimes it feels like we’ve known each other forever.

When Elliot and I got married, we were both established in our careers and many of the people we celebrated with were colleagues. We were married in the church where we were then members, First United Methodist Church of Downtown Orlando (FUMCO). When we began dating, finding a church where we were both comfortable was a big deal given our differing backgrounds. We found a home at FUMCO, even though the one precious elderly man who shouted “Amen” at various intervals along with the infrequent clapping was unnerving for Elliot at times. He was wont to whisper to me regularly, “there’s no clapping in church.” The pastor who married us, Britt Gilmore, also went on to baptize both of our boys despite the fact that he and his family moved to Ireland to be missionaries soon after we got married. Amazingly, they had visits scheduled during the scheduled baptisms, both of them, years apart.

After the ceremony at FUMCO on our wedding day, and taking some pictures, we joined our guests at the end of cocktail hour at the Ballroom at Church Street Station after a horse drawn carriage ride. That ride was one of the only surprises for Elliot that I was able to carry off! It was August in Orlando, so not the most comfortable, but we made do.

Going through some of the pictures from our wedding is truly bittersweet. We have changed jobs and lost touch with many of the people who came to our wedding. For instance, I had three living grandparents when we got married.

Both of my paternal grandparents (to the left of me in the picture) have passed away and now my boys only have one great grandparent, their maternal grandmother, who is standing next to Elliot in the picture above. Waiting to have children does have unintended consequences, sadly, but I am grateful for the time we had with them. Neither of my grandfathers met my boys and I do wish they had had that chance. Their legacy of commitment and loyalty to family lives on and we take the opportunity to tell the boys about them whenever we can.

The picture above is one of my favorite pictures of my family. Yes, there are a lot of us and I’m the shortest of them all.

Every event (and particularly weddings) amongst us has been an adventure. So many details and egos and expectations and someone is usually upset with someone else for something. The joys of a big family with lots of strong personalities. It can be a challenge, but the love and care and concern between the 6 of us is passing down to the next generation.

Thinking about the past is often safer than looking too far into the future right now. This anniversary lands during a time of uncertainty with a recent progression and adjusting medication. I look at my dear sweet husband of 11 years and my sweet boys and I ache with the knowledge that my illness and death will be devastating. It is an excruciatingly difficult task at times to stay in the moment, to be present.

Despite the murky details of the future, what I know today, on this, the 11th anniversary of arguably the most important decision I made, is that I’d do it all again in a heartbeat. Being married to Elliot and all that comes with that, has been the best thing that ever happened to me.

Happy anniversary, my love. Together and Still Counting. 😘❤️

So long Ibrance, two years was a good run

Progression was not the news we were hoping for this week, but then the unexpected paths that life has brought us has been par for the course over the last few years. Expecting the unexpected is a difficult adjustment to make and clearly I’m not quite there yet. Two (2) years of stability after the initial shock of the diagnosis had, in many ways, lulled me into expecting that status quo to last.

Last Friday was my sixth PET scan.

We heard nothing over the weekend, which was not a good sign since my medical oncologist has been extremely consistent about calling me over the weekend after a scan to give me the results.

Monday afternoon, I met with my medical oncologist, Dr. Grace Wang, at the Miami Cancer Institute. She delivered the news with a matter of fact compassion that we’ve grown to expect from her. Not only did we discuss the “mild progression” that the PET scan showed, but also her plan. She’d been busy, consulting with other doctors and reviewing the details of my genomic and genetic markers and mutations, yet she started the conversation by asking what I wanted to do, if there was a trial I wanted to pursue. She’d also presented my case to a molecular tumor board, gleaning more perspectives.

Bottom line, I have two new lesions, one in my spine and one in my pelvis. The rest of my bone mets are still inactive and dead or still dying. It is definitely a noted silver lining that instead of dealing with hundreds and hundreds of mets all throughout my skeleton, we are only dealing with two (2).

Yet, those two are two too many.

I’ve learned well over the last two years that medical oncology is both science and art. Yes, the medication is based on science and research. Understanding the body, its processes and the cells, the cancer cells and otherwise, is important. However, there is still so much that we don’t yet know. So, when the cancer figures out how to get around medication that was designed to keep it in check, then the scientist must also embrace the art of anticipating the next move the cancer cells might take.

My medical oncologist is both scientist and artist.

I’m so thankful for that. Truly.

Even though the progression is mild, the fact that my tumor markers have been rising over the last few months, communicates that the mild progression we are seeing right now is likely the harbinger of a major progression. In light of this development, we are in the process of changing my medication from Ibrance and Letrozole to Piqray and Faslodex. We’d already completed the testing and paperwork necessary to confirm that I have the mutation (Pik3ca) that Piqray targets.

I am thankful for the research that makes the medication I will be taking possible. I am thankful for a medical oncologist who cares. I am grateful for the support I’ve been offered over the last few days.

I’m also really fucking angry.

I’ve been living with this disease for 2 years and while it hasn’t been easy, we’d hit a plateau where I finally felt as though we’d adjusted, we’d relaxed. Probably too much. The reminder of the fact that cancer will take my life, that this disease is definitely not chronic, that there is no cure, that the best medication science can offer right now will only work for a glimpse of time, sucks big time.

I’m thankful for the time with my family that the current medication gives me. At the same time, I’m so angry that I’ll miss out on so much. I’m so angry that the cancer is able to get around the best we have, that allowing the doctors to inject me with poison for more than two years, resulting in hospitalizations and blood transfusions and many many sleepless nights, hasn’t been enough. All of the alternative therapies and everything I’ve done to literally turn my life upside down, hasn’t been enough.

I’ll get back to a semblance of equilibrium, I’m sure. For now, everything is upside down again.

Nancy’s Point 2019 Summer Blogging Challenge

I’ve never participated in a blog hop before and I look to Nancy Stordahl of Nancy’s Point as a bit of a trailblazer in the cancer blogging world. I read some of the responses to her blogging challenge last summer, but I didn’t really start blogging until this year. Blogging is, by definition, a mostly solitary endeavor, but I have to say that I’ve really enjoyed engaging with other bloggers, especially those of us who talk about breast cancer or other health challenges.I’ve had so many “ME TOO” moments and have used the musings of others as a spring board to talk about issues/ideas.

So, without further ado, here are my answers to the questions posed by Nancy on her challenge:

1.  Who are you? If applicable, share anything you want about your cancer (type, stage, when diagnosed, whatever.) Share something about yourself such as where you live, the name of your blog and it’s “mission” (no links here, though, or you might end up in spam), a challenge you have faced or are facing now, or whatever you want.

My name is Abigail Johnston (née Schroeder) and I’m a daughter, sister, wife and mother living with Stage IV metastatic breast cancer. I was diagnosed approximately two (2) years ago at the age of 38 and my life irrevocably changed. I’ve shared a great deal on my blog about my diagnosis and my efforts to adjust to the new challenges I and my family are facing on a daily basis. As I write and publish this blog post for the blog hop, I am gearing up for my newest PET scan, which will tell us for sure whether my cancer is behaving itself. I’m still on my first targeted therapy and am hoping and praying for a good long run. My husband puts up with so much and has supported me as we walk together through the worse experiences of our lives. My boys (now 6 and 4), don’t understand but often serve as the barometer for the emotional winds in our household.

2.  Have you ever participated in a blog hop before?

No! I’m a relatively new blogger (I started my blog in late 2018) so I’m still trying to figure all of this out! What has been super amazing about fellow bloggers is how supportive everyone has been. Even people who have a blog completely different from mine have followed and commented and engaged with me. I learn so much from other more experienced bloggers.

3.  What’s your favorite sort of blog post to write and/or read – personal story, informational, how to, controversial, political, opinion, rant or other?

I like reading posts that have a personal element/anecdote that also has a clear purpose or call to action. I do try to write this type of posts since I do think they are the most well received.

4.  Describe yourself in three words. Yes, just three!

Passionate Loyal Advocate

5.  Name three of your favorite books from your youth (whatever age that means to you.) that had an impact on you.

  1. A Wrinkle in Time by Madeline L’Engel
  2. Little Women by Louisa May Alcott
  3. Pilgrim’s Progress by John Bunyan

6.  What are you reading right now, or what’s on your to-read list for when you have time?

The Quantum Series by Douglas Phillips. I set a reading challenged in Goodreads for 2019 to read a book each day and I’m ahead of schedule! Most of the books I’ve read this week have been science fiction, which is a perfect escape when things get hard.

7.  What’s your favorite dessert of all time?

German Chocolate cake!

8.  Tell us about a special pet you have, had, or would like to have. (Never wanted a pet, that’s okay too.)

I love cats and have had one or two or three of them since law school. Maya is our current fur baby. She’s just turned 1 and is so much fun!

9.  What’s something people don’t know about you and might be surprised to learn?

I’ve pretty much been an open book on my blog and recently shared about the tattoos I’ve gotten since my cancer diagnosis to repurpose the areas of my body disfigured by scarring from my surgeries and procedures.

10.  Do you believe healthcare is a privilege or a right?

I am conflicted about this. On the one hand, I do think that the government has responsibility to care for its citizens. I believe it is often the lack of regulation/oversight and certainty in the marketplace that drives up the cost of healthcare. I believe the government has fallen down on its job here. I also think that people have some responsibility to stay healthy and to plan for health challenges. So, I guess my answer is “it depends” and “a hybrid”. I’ve also participated in the foster care system as it underwent privatization and while there were some bright spots, I believe the care of children in foster care took a major negative hit when for profit companies got involved. Overall, I think for profit companies have no place in health care.

11.  What’s your favorite thing about blogging and/or reading blogs?

Getting to know other people in their own words. For me, I blog as catharsis for dealing with the realities of terminal cancer and to leave a very clear record for my kids. That this endeavor has struck a nerve with others has been a bonus.

12.  What’s something you really suck at?

Holding space for others. My initial gut reaction is to jump into fix it mode. I’ve learned by experiencing this how difficult it can be when others jump into wanting to fix something or offering fixes. I’m trying to do better.

13.  What’s something you’re pretty good at?

I’m a good problem solver in a practical way. I know my legal background helps a great deal here and the fact that I’ve always been a but out of step with the “mainstream” in one way or another my whole life. I see things differently and I see different possibilities.

14.  How do you escape from cancer (or life in general) worries?

Reading. I love books that are very different from my life, like science fiction. I also enjoy reading thrillers (legal or otherwise) and I devour anything by Jodi Picoult and Diana Gabaldon just to name a few of my favorites. Check out my list of books on Goodreads!

Can’t wait to complete the blog hop and get to know other bloggers. Happy #MetsMonday!

Powered by Linky Tools

Click here to enter your link and view this Linky Tools list…