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Orlando Mom’s Blog: https://orlando.citymomsblog.com/?s=Abigail+Johnston+&submit=Search

Wildfire Magazine: you should do yourself a huge favor and just subscribe to Wildfire right now. The online/digital subscription is fine but the physical subscription where you get a magazine chock full of amazing writing by men and women living with Stage IV metastatic breast cancer in a convenient purse sized paper edition. I’ve written several articles that have been published and if you sign up for a years worth subscription, I’m happy to autograph any article of mine you end up with!

Cancer diagnosis story and updates: https://itsabouttimemets.com/mets-stories/abigail1

SurvivingBreastCancer.org: https://www.survivingbreastcancer.org/abigail-johnston

Nancy’s Point: https://nancyspoint.com/storm-cloud-abigail-johnston-metsmonday-featured-post/

Global Girl Community: https://globalgirlcommunity.com/Living-Life-Like-Youre-Dying-When-You-Really-Are/

Living Beyond Breast Cancer: https://www.lbbc.org/blog/my-initiation-new-world

The Floridian: https://floridianpress.com/2019/11/the-unfortunate-lack-of-funding-for-the-fight-against-breast-cancer/

AdvancedBreastCancer.net: https://advancedbreastcancer.net/community-advocates/abigail-johnston/

Medical update, 2nd of 2020, medical mysteries

I had not planned to post yet another medical update, nor do I really like having information to share that constitutes a medical update; however, such is the existence of those of us living with Metastatic Breast Cancer (MBC).

So, here I am.

Last week, as Elliot and I were preparing to head to Orlando on Sunday to assist his father in settling into a new nursing home, I didn’t feel well. It was a migraine, complete with nausea, light and sound sensitivities and generally yuckiness. I tried to go, I really did, but that just didn’t happen.

Sunday afternoon was when I started vomiting. It may be TMI, but that was the beginning of nearly four (4) days of intractable vomiting. That’s literally the medical term for can’t stop vomiting, throwing up everything, misery to the nth degree. Fancy, right?

The reality of it is, it sucks.

Following my doctor’s advice, on Monday we went to urgent care where I got fluids and medication. That worked for about 6 hours. We went back to urgent care the next day, following my doctor’s instructions, where I received fluids and medication, plus they did a urinalysis and bloodwork. Looked like I had a UTI, so this time I left with antibiotics, which I immediately threw up after taking them.

By this time, it was pretty late on Tuesday night. There was a certain amount of desperation that had been building. I had had some body aches, but now it felt as if my entire body was on fire. I couldn’t keep down any pain medication so that didn’t help. I fished out my vape pen from when I’d first been diagnosed that I only use for break through pain and I vaped, A LOT. Once I’d nearly emptied the cartridge (hard to do, but I was DESPERATE to sleep), I was able to sleep for a few hours. As an aside, I’ve never been that high before and it was a glorious feeling for a few hours — my body didn’t hurt and I could finally relax.

My sweet husband was up with me nearly the whole night. It hurt so much to vomit that I would wail and cry each time I did. It was one of those marital moments that you can look back on and say, this, this is how I know he loves me.

When morning came, we decided to head to the ER. We’d had enough.

Once we arrived, we were brought back quickly and I got morphine really fast. Pretty sure they could see how bad I felt. Those 4 mg of morphine changed my life, literally. I could finally get comfortable for more than just a few hours. I got more anti nausea medication too. I could finally relax.

I’ll spare you the various potential diagnosis they tried on for size. Some of them were pretty scary. The cause of all this misery is still unknown for sure, but what we do know is that I showed up to the ER with metabolic acidosis.

Metabolic acidosis is a condition in which there is too much acid in the body fluids. It can also occur when the kidneys are not removing enough acid from the body. There are several types of metabolic acidosis.

Diabetic acidosis develops when acidic substances, known as ketone bodies, build up in the body. This most often occurs with uncontrolled type 1 diabetes. It is also called diabetic ketoacidosis and DKA.

Hyperchloremic acidosis results from excessive loss of sodium bicarbonate from the body. This can occur with severe diarrhea.

Lactic acidosis results from a buildup of lactic acid. It can be caused by:

• Alcohol

• Cancer

• Exercising intensely

• Liver failure

• Medicines, such as salicylates

• Prolonged lack of oxygen from shock, heart failure, or severe anemia

• Seizures

Other causes of metabolic acidosis include:

• Kidney disease (distal renal tubular acidosis and proximal renal tubular acidosis)

• Poisoning by aspirin, ethylene glycol (found in antifreeze), or methanol

• Severe dehydration

Citation: https://medlineplus.gov/ency/article/000335.htm

That pain I had, was literally the acidic blood in my veins affecting my muscles. Crazy, right? I arrived at the emergency room with a white blood cell (wbc) count of 15.3. I was thinking sepsis, I was thinking, maybe this is the end. I was thinking, is my body just failing? I was thinking, I must have brain Mets. I was thinking …. NO, I STILL HAVE TOO MUCH TO ACCOMPLISH!

Throughout the time I was in the hospital, there were questions about whether Piqray, the medication I take to manage the sneaky cancer boogers in my body, was to blame. While I am not diabetic in the traditional sense, Piqray causes hyperglycemia, which means I take Jardiance, a medication diabetics often take to manage their sugar. Jardiance assists with removing the excess glucose before it becomes insulin and that happens through the urine (TMI, again?). So, some of the diabetic complications do apply to me even though I’m not diabetic. Explaining that distinction is sometimes difficult and lots of medical people have argued with me, insisting that I do have diabetes. However, after my doctor consulted with Novartis, the manufacturer of Piqray, and consulted with others, including my new nephrologist, the conclusion is that Piqray is not to blame and I can stay on it. Woo-hoo.

The life of a metastatic breast cancer patient is not easy, but there are some bright spots to focus on if you try to find them.

For instance, my sister spent the first night at the hospital with me and when there was a nurse in training learning how to access ports who began to try to access mine, she got in her face and made her stop. She wasn’t about to let someone learning to stick me after all I’d been through. She’s my younger sister by 18 months and I’m pretty sure that was the first time she went all mama-bear on my behalf. Again, a moment where you can look back and say, this, this is how I know my sister loves me. She also made sure I had my phone charger and plugged my phone in whenever we could–soooooo key!! Amy is also an amazing photographer. She photographs natural beauty products and she brought a bag of stuff for me to hand out to the nurses. Head on over to Instagram and follow her @beautystealsinward for a myriad of ideas and knowledge about companies who are doing right by their employees, their customers and the environment!

I’m so thankful for my family who stepped up in many ways to ensure that my boys got to school, did their homework, ate food, slept, etc. It’s a huge weight off my and Elliot’s shoulders to know they are cared for, loved, and we don’t have to worry, we can focus on my care. My mom, dad and sister went above and beyond for us and we’re forever grateful to them. I’m not always good about asking for help and when you visibly see the love in the actions in others, that’s when you really know you are loved.

I’m also thankful for all the friends who have checked in on me and have offered solutions and comfort and support. Reminders that we are not alone is huge when you are not feeling well. Nataly, in particular, spent much of the day with me one day and gave me these awesome socks with our picture on them!!! The nurses were very complimentary and I’ve given out the place she got them to a lot of people.

I’m thankful for my port and how that saves me from being stuck so often. One of the more experienced nurses gave me some sort of special needle in my port that allowed me to get the contrast for my Brain MRI in my port. Since I’ve lamented for the past two years that I didn’t know to ask for a power port back in 2017 when I got mine, that has made me so happy!! I now know it’s possible, so I’ll be asking for it. Fewer sticks the better!!

Before I end, I want to talk about one of the few panic attacks I’ve had during this whole cancer experience. On Friday, when I was originally supposed to go home, I woke up after a pretty rough night to yet another migraine and vomiting. I also had tingling in my feet and hands. Then, my hands stopped working. I literally couldn’t move my fingers and nearly dropped the bag of vomit all over myself. I think I was crying or maybe wailing, things are a bit blurry. The nurse got me medication quickly and I could relax and my fingers worked again. Since I’ve not been able to keep much of the Effexor I take down because of the vomiting, I’ve wondered if that played a role in how much anxiety I had. I also understand that the seizing up of my hands and the tingling was from a severe potassium deficiency.

Whatever the cause of my panic, I’m reminded of how powerful our minds are and how much control what we think has over our bodies. I’m not saying positive thinking is the cure all, just that what we are thinking or feeling does have an effect. That effect can be positive or negative. In that moment, when I couldn’t stop vomiting, I was in excruciating pain from my head, and my hands didn’t work, all I could say was … “something is wrong.” I kept repeating that over and over, almost like a mantra. The nurse tried to get me to calm down, by saying calm down (hint hint, not the best technique) but I just couldn’t. My rational mind was off line and all I could feel was panic.

Once the morphine hit my system, I was able calm down and my hands worked again. Once the physical symptoms dissipated, the feelings I had about those symptoms became manageable. Many of you who know me know that I’ve spent a lot of time and effort avoiding taking narcotics. I do want to make very very clear that I know there is a place for narcotics, there’s a time when they are appropriate. This was one of those times.

For everyone who stuck with me to the end of my saga, thanks! It was a long week for everyone and I’m so happy to be home.

The Day That They Hear Us

These are the lyrics of the song written by Shannon Curtis to highlight the plight of those of us living with stage IV metastatic breast cancer.

I know today you were too tired

For feet to ever reach the floor

I’m here to tell you it’s alright, I’ve been there before

Today I woke up with a mission

Today my strength will carry you

I’ll tell your story, make them listen, turn try into do

Until the day that they hear us

Until the day that our lives are counted

I will lay down shoulder to shoulder with you

I am determined to save your life

Together our voices won’t die

Until the day that they hear us

We’ve had to let go of so much

We know how it’s dangerous to dream

And this is not some pretty party dressed in pink

So every day I get to wake up

I’ll be a voice demanding change

To you and all those lying here: Our lives mean something

Until the day that they hear us

Until the day that our lives are counted

I will lay down shoulder to shoulder with you

I am determined to save your life

Together our voices won’t die

No this is not some pretty party

A cure won’t come wrapped up in pink

To you and all those lying here: Our lives mean something

Until the day that they hear us

Until the day that our lives are counted

I will lay down shoulder to shoulder with you

I am determined to save your life

Together our voices won’t die

Today’s the day that they hear us”

These words resonate with me so very much since advocating for research dollars to be allocated for MBC can often feel like screaming into the void. Knowing that there are some people listening, some people out there who will carry the torch after those of us living with this terminal disease, helps more than anyone knows.

When will they hear us?

When will they allocate the funds we need to research?

When will my life matter enough?

2019 Metavivor Stampede and METup Die in

This year was the second time that my husband, Elliot, and I went to DC for the Metavivor stampede and the METup Die In. Last year, we were nearly entirely focused on the Die In and I think we didn’t enjoy the time as much. This year, we had a very different experience.

Why?

I think part of it was that we had an idea of what was going to happen, what we were going to do and who we were going to talk to. Definitely a part of it.

I think part of it was that we knew a lot of the people who were there. In fact, it felt a little like a reunion of sorts at times. There were people there I’d met only last year and have stayed in contact via social media since. Definitely a part of it.

I think part of it was that we had another project we spent time on, the reading of the play, IV. The entire cast played double duty during the events in DC, going back and forth between trainings and preparation for the planned advocacy and rehearsals. Definitely a part of it.

I think part of it is that I’ve grown up a bit in my advocacy for MBC, I’ve learned more about living with this disease. I’ve met others who are living with MBC, I’ve heard their stories and, some of them, I’ve had a part in intervening to help them. Definitely a part of it.

Unlike last year, I had met and gotten to know many of the women we lost since the event last year. The names we held up during the Die In to commemorate the ones we lost were a lot more personal this time. I could visualize the faces, remember the stories, the experience of learning about them, hugging them.

That definitely made a difference this year.

Sometimes advocating for research and those living with this insidious disease can feel hopeless. For instance, we were advocating for the passage of some of the same bills we asked to be passed by Congress last year. Doesn’t feel like we’ve made much progress, at least in that example.

And yet, we’re having conversations with people who matter about things that matter. Those conversations happen daily now, for me.

What I do know is that our efforts do not come back void. Conversations are happening. Some people appear to be listening. I hope so. The only thing we can do is continue to raise our voices, continue to bring awareness to our experiences. Is it enough?

I can only hope so.

Elliot came along this year as he did last year and I can’t say enough about how grateful I am to be doing life with this man. He doesn’t complain (much) about all of the crazy adventures I cook up and he not only comes with me, but he jumps in to help. I am very aware of how blessed I am to have a partner who is all in, no matter what, and who honors his wedding vows because he meant every word. I don’t thank him enough.

In May of 2019, I received a message from Laura Kompanik, on the right side in the picture above. She told me that she’d read my blog and wanted to talk to me about writing for advancedbreastcancer.net. I’d not heard of it at that point and when I looked it up, I saw my dear friend, Emily Garnett, in the middle of the picture above, is also writing for them. So, I sent her a message to gauge her experience and the rest is history! I’ve been writing for ABC since May and have found another amazingly supportive community. Laura took a train from where she lives to participate with us in the march and Die In. That’s commitment!! HealthUnion, the owner of ABC, has over 20 other disease specific sites (they call them all chronic, but most of you know how I feel about calling MBC chronic) and they are an amazing company to work with.

So, will I go back to DC in 2020 for a third time? It’s a possibility if the state specific stuff I’m plotting doesn’t pull me away for October. What I do know is that I cherish the time I’ve spent in DC the past two years, the people I’ve met, and the sense of fulfillment I’ve felt while participating.

The Violence of Cancer

I was at the San Antonio Breast Cancer Symposium (SABCS) in early December, 2019, when a tweet was posted by Liza Bernstein referring to the “violence of cancer. ” At first, I thought I would disagree with the characterization and then, when I spent some time pondering the concept, I discovered that it resonates with me in several different ways.

Here’s the tweet …

I wasn’t able to attend the specific event she was at and referred to in this tweet, but I heard a lot about how wonderful and powerful it was.

And it got me thinking, pondering, ruminating about this violence of cancer concept.

First of all, the concept underlines that we human beings are not fairly matched against cancer.  Cancer is capable of doing violence that robs us of our very humanity and it literally does that to each person who becomes its host. This is an excellent time to reiterate that the “fight” language emphasizes the chasm between patients and cancer in a wholly unhealthy way. Those of us who have the rogue cancer cells multiplying without remorse are wholly unequipped to defeat the inexorable march towards domination; all that modern science can do is throw roadblocks in the Cancer’s path and that doesn’t work for long.

Secondly, the concept of violence underlines and highlights the “trauma” of living through the experiences of cancer and the treatment. Each step is traumatic in so many ways and there isn’t sufficient information or understanding of how that ongoing trauma impacts every area of the patient’s life and circle. I’m not just referring to those of us who will be in treatment (aka ongoing recurring trauma), but also to those who have been told that their treatment is over. For men and women enduring the trauma of cancer treatment, the trauma is never over and the resources to deal with said trauma are sorely lacking.

Third, the concept captures the devastation in the aftermath.  When a human being encounters violence or a “trauma,” the effects of said experience reach far beyond the actual trauma.  The concept of Post Traumatic Stress Disorder (PTSD) highlights the brain and chemical changes that occur after a trauma is experienced as well as the ongoing affects. The long lasting effects of trauma has been studied with survivors of a military conflict.  While living with a terminal diagnosis is quite different from surviving bombs and bullets, the actual experience of attempting to live after or during said experience is actually rather similar: nothing is the same and reminders exist everywhere, ready to pop out when least expected to wreak havoc.

Fourth, the concept of violence is illustrative in that the victims of violence are often blamed for experiencing violence by inviting or attracting it, just as cancer patients are often blamed for … what? Not preventing their cancer? Patient shaming is a thing just as victim shaming is a thing. For every person who shows empathy, there is at least one more who silently judges or maybe vocally judges. As an aside, the people who judge, silently or vocally, a cancer patient and assigns blame to the patient deserve to be water boarded or maybe buried alive or some other equally nasty torture such as chemo.

Fifth, just as violence against an individual affects their entire family, the violence of cancer shows no mercy to everyone it touches. Additionally, just as there are few resources and assistance to the family members of a person affected by violence, there are few options and little assistance to the caregivers, the family and the friends of people with cancer. The people who shoulder the vast majority of the burden of caring for their loved one and watching the relentless progressions and affects of the disease and treatment deserve medals and parades and keys to the city and a pile of money so they never have to work again. And yet, the isolation after a loved one passes only magnifies and intensifies the pain of loss.

Sixth, the isolation of those affected by violence is extremely similar to the isolation many with cancer experience. Just as those not exposed to violence are often visibly uncomfortable in the presence of someone who has been affected, so are the healthy people in the presence of someone who is dying of cancer. This response, often visible and usually demonstrated by those who seem least likely to react in this way, is horrific, demoralizing and heartbreaking. Many simply withdraw because this reaction is so painful.

Seventh, those who are affected by violence stereotypically respond in one of two ways: 1) by withdrawing from the world to protect themselves and others; or 2) by exhibiting anger towards themselves or others. These two responses are also quite visible in cancer patients to the outside world; however, the latter is often misunderstood. It’s probably the same for victims of violence as well. Living with this awful weight is difficult, you see. The fact that it is invisible to others only makes it worse. At some point, the frustration builds and builds.

Eighth, the response to those who suffer from PTSD or some other mental health affect of violence or cancer or something else is not to address the issues, but typically to medicate said issues away. The medical provider or layperson who is willing to weigh in and meet the victim of violence or cancer where he or she is at, is extremely rare. Most medical providers consider their job done once a diagnosis is given and treatment is completed. The aftermath is not their concern.

Ninth, violence, like cancer, does not discriminate. Neither violence nor cancer cares about degrees, acknowledges accomplishments, or has any idea what family a victim came from. Old and young, men and women, PhDs and people who didn’t graduate high school, slackers and workaholics … no one is safe.

Tenth and finally, the best resources for victims of violence and cancer patients are those that the people within the community create. Those who have been through the experience know best how to support those that are entering it now. While no two experiences are exactly alike, the ability to say … “I know how you feel, I’ve been there too,” is invaluable. For those of us who notice a gap, we figure out how to fill it.

While cancer and violence may be inextricably linked, cancer truly is the worst club with the best people as my dear friend, Emily Garnett is fond of saying. I’d never wish this experience on anyone; at the same time, I am forever grateful for many of the people I’ve met as a result. People who I likely never would have rubbed elbows with.

Medical Update, first of 2020

It’s 2020 and I’m still marveling that the 90s were so long ago! 2019 ended on a not so great note medically as I’ve been dealing with increasing right leg pain for the last few months. I did not repeat the mistakes I made when I was initially diagnosed and definitely reported my pain, frequently and urgently. While I am grateful to the doctors on my team who listened and responded, I’m extremely disappointed that my experience with a new doctor who was supposed to offer options had to result in me filing a formal complaint against her and her physician assistant who dismissed my pain and acted as if I was making it up.

I do have certain expectations of the people who are paid to assist me with my medical treatment. My visits with these people are not voluntary, I have to go. Their job is clear … to treat my cancer, the symptoms of that cancer along with the symptoms of the medication the doctors prescribe for me, and to look at me as a human being while performing task one and two. To me, the third part becomes extremely important when pain is involved and when any part of this three legged stool is compromised, the entire thing collapses.

So, here’s the chronology and the remaining tasks …

I’ve seen my physical medicine doctor, who was a bit stymied by my symptoms. He attributed the pain to the Mets in my right leg/hip. Some of you may remember that I had a 5 cm tumor in the middle of my right femur when I was diagnosed back in 2017. That femur was about to shatter when an orthopedist inserted a titanium rod inside that femur (along with the one on my left side). My right leg has had a lot of trauma, but this was a new pain and it has increased over the last few months.

After the physical exam, my physical medicine doctor sent me for xrays and an MRI. The X-rays showed that the hardware (one rod and 4 screws in each femur) are still properly placed. Some of you may remember that I developed heterotrophic ossification (HO) in early 2018, which is when microscopic shards of bone are left in the muscles and then it starts to grow. Super painful! The really bad thing is that the protocol is simply to increase muscle mass to deal with it, while dealing with and/or medicating the symptoms. The HO is mostly absorbed on the left side but there’s some still showing up on the right side, which could be part of the reason I’m in so much pain.

I had the MRI on Christmas Eve and had to repeatedly call and follow up to get the results from the orthopedic oncologist who was so terrible. When she finally got on the phone with me (after I told her supervisor I wouldn’t get off the phone unless she told me), she told me that I likely have progression and I should talk to my medical oncologist. Her dismissive and snippy attitude set me off and I had a rather loud conversation with her about how she should talk to patients. Pretty proud of myself that I managed not to curse her out but hopefully made the point that you don’t say stuff like that which raises anxiety exponentially, don’t offer any solutions, and then just get off the phone. I’m also still pretty incensed that she made no effort to talk to the rest of my medical team and basically just wrote me off.

So I met with my medical oncologist, who is amazing and never makes me go for longer than a day without knowing what’s going on, and we discussed the results of the MRI. There is a met in the head of my right femur that is pretty big. I’m not in danger of my bone shattering any longer because of the hardware, but I still have cancer there. Between the two MRIs in May of 2018 and December of 2019, the met grew from 5 cm to 8 cm. However, I’ve had 5 PET scans in that interval as well and the measurement that indicates activity (aka likely growth) has gone down, especially since I’ve started my current treatment. My last PET was in November of 2019, which was after the pain started.

If your head is spinning, just think how I felt!?

Realistically, I could be in the midst of a progression, which means my second line of treatment may have failed me after 6 months or maybe not. That kind of uncertainty is infuriating. Absolutely infuriating. Almost as infuriating as the pain that gets so bad I’ve had to resort to taking the oxycodone that my pain management doctor insists on prescribing to me even though I resist taking it. I hate how narcotics make me feel but just the fact that I’m taking it nearly every day should give some insight into how bad it is.

The plan, for now, is to stay on my current treatment, get a physical therapy consult to see if further exercises would be helpful, and then a PET in February, which would be the usual three month schedule. I’ve not had to change my routine much because I’m literally the most stubborn person about cancer not taking things away. I don’t enjoy being in pain or the side effucks of the medication I have to take to function, but I’m functioning.

Actually, I’m more than functioning …

My kids have had an amazing Christmas break, the connections I’ve made during 2019 means that I’m stepping into 2020 with options and ideas and really cool opportunities, my husband and my boys are healthy, I love connecting people with lawyers to do pro bono work, I love writing this blog and for ABC, which is a division of HealthUnion, a company full of amazing people, I love serving on the PTA Board at my kiddo’s school and volunteering in the library and I cherish the friendships I’ve made over the past two years, inside and outside of the Mets community.

Sometimes all you need to focus on the silver linings is to write them down.

So that’s my update … I’m starting off 2020 with pain but with a full heart and so much gratitude that I’m still here, still functioning, still parenting, still contributing and that’s the way it will be until it changes. I’m looking forward to seeing how my word of 2020, SACRED, is weaved into the fabric of the year and our experiences as a family.

New Year’s Day 2020

2020 is here.  Each new season and calendar change means something very different to me now.  When I was young, I felt the frustration and anticipation of yearning to be older and for time to pass more quickly.  As I’ve gotten older, time seems to move too fast sometimes and not fast enough at other times.

Once I knew that my lifespan will be cut amazingly short, time has taken on a new meaning.  I struggle to remain in the moment at times and other times, I can’t bear to see the moments end.  I sometimes visualize what my boys will look like when they are older, what their children might look like, who they might choose to spend their lives with.  Sometimes that is too hard because I will most likely miss that. When these thoughts become overwhelming, I try to channel those emotions into writing a letter for my boys to open at these key milestones.

If some of most recent studies on lifespans is accurate and my cancer stays in my bones, I can hope for a life expectancy of approximately ten (10) years.  Next March will be my 3 year cancerversary, so that means about 7 years left.  This is better than the 2-3 year median life expectancy of metastatic breast cancer overall, which I will reach in a few months time, but that is still nowhere near enough time.

With these thoughts swirling around in my head, I sat down to think about my word of the year for 2020. My word for 2018 was JOY and that reminded me to find the joy in the every day moments, to look for joy in the moments that did not seem joyful.  I meditated on that word for 2018 and found that if I truly looked for joy, I found it.  I found joy even during the most difficult days.  I read once that what is inside will spill out, so if you are an angry person, when tested anger will come out; that if you are joyful and hopeful, when you are stressed, that’s what will spill out.  I’m still very angry, but I’m working on filling up on good things so that’s what comes out.

For 2019, my word was EMBRACE.   Those of you who know me and my midwestern bubble, all of the embracing and touching expected down here in Miami is such a stretch for me! I’ve gotten used to it so much that when I’m out of Miami, I lean in for the kiss or hug as a habit now. Made for some awkward exchanges when I was in San Antonio for the San Antonio Breast Cancer Symposium, especially with some researchers from other countries.

In 2019, I embraced new adventures that spanned launching my own non profit, taking an official role on the PTA board at my boys’ school, I read poetry in a play highlighting the experiences of those us with stage IV MBC, I linked up with Compassion & Choices as the Miami Action Team Leader, and I was a mentor in the inaugural GRASP program in San Antonio.

2019 was my all in year for terminal cancer advocacy and the first full year of this blog.

For 2020, my word is SACRED. Picking a word of the year is always an adventure. Different words come to me and then I see them everywhere as I begin thinking about choosing one. I firmly believe that God brings to me what I need to be focusing on and He uses whichever word He brings me in ways I don’t anticipate. Whatever it is, I know that it will be an entertaining adventure that will stretch me beyond my wildest dreams!!

Happy New Year!

New Year’s Eve 2019

2017 was a doozy, probably the worst year of my life to date.  2018 and 2019 have been quite different as we continue to recover from 2017 and discover how our lives have changed. Every time I start to think we’ve figured something out, things change. The saying … “the only constant is change” … is something I think about a lot.

So, in no particular order, here are the lessons of 2019 …

  1. We’ve re-discovered in a very different way that living life closely with family can have significant ups and downs.  Having this much close family time for the first time in decades has brought it’s own challenges and navigating those issues as adults is very different from when we were kids. My parents regularly refer to the 6 of us as dragons and when we’re at odds, it’s pretty spectacular in many different ways.
  2. We’ve discovered that as soon as things seem stable and quiet, things change. I experienced my first progression in August of 2019. Progression is when the cancer mutates, figures out how to defeat the cancer medication, and starts spreading again. My progression was “mild” as I only had two new bone Mets, but the fact that the cancer mutated at all was devastating. I am thankful that Ibrance worked for 24 months and I had a good quality of life. Piqray is now my main cancer drug and we’re still working on figuring out how to capture a similar quality of life.
  3. We’ve discovered that being a part of the right community is important for the whole family.  It has taken us a bit of time to find that community, but I think we have found a place where we are all supported and we can be friends with other families.  A “play date” with a bunch of boys is a little different from “play dates” with girls, but we’re figuring out how to make it work for everyone. We attended our first “Friendsmas” this year and have rediscovered the joy of being close to other families and the benefits of being able to lean on others.
  4. My non-profit, Connect IV Legal Services, launched officially in January of 2019 and I’ve been able to connect over 70 families with legal services that they desperately need. It’s hard to describe how meaningful it is to me to be helpful to others, to ease a burden, to provide solutions.
  5. I lost some people I knew in 2018 to cancer but I had no way to know that 2019 would be devastating in the metastatic breast cancer world. The number of young, vibrant women, daughters, mothers, wives, we lost in 2019 has hit me hard. I knew many of them in real life, all of them online, and it’s been one of the hardest things I’ve ever experienced. I am irrevocably changed by the women and men I’ve met and gotten to know who have cancer. They have changed me and I believe I’m better for it.

At the end of the day, family is the most important.  At the end of the day, the boys being healthy, learning to be authentic and growing up with the values we consider important is so key.  If we can help others along the way, then so much better.  Here’s to ringing in 2020 with an even better outlook on life than 365 days ago!