don’t ignore stage 4

5 Stages of Grief

It has only been one month since my oncologist told me that I had metastatic breast cancer, and it’s only been a little over three weeks since my hysterectomy. Honest to dog, it feels like a couple months since all this began, as if I am in a suspended state. Between Covid-19 and my medical leave of absence, I have no concept of time anymore.

During this period of time, I have definitely cycled through the different stages of grief, which I imagine is quite common.

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

If you are like me and need a refresher as to what constitutes the 5 Stages of Grief, refer to this article on Psycom.net (link), which discusses the Kubler-Ross Model.

DENIAL – Avoidance, Confusion, Elation, Shock, Fear

I previously believed that denial involved only avoidance, and even thought at one point, “Well, at least I never visited the denial phase.” Boy, I was wrong.

During September, I had both a bone scan and a CT scan of my neck down to my special area. When the bone scan posted to MyChart stated that my sternum presented as potential metastatic disease, I had a delayed mental breakdown. I had an important meeting that morning, which I had to lead. I told myself that I could break down later. When it was safe, I ended up taking a half day from work because I went to a bad place.

Quite simply, I went into shock. 

I swear, I knew that very day I was going to be stage 4 and that my cancer was back. I was already back in the chemo chair in my mind. I rocked back and forth in a corner in my bedroom, whispering, “I can’t do this” over and over again. My face went numb. My arms went numb and eventually, my hands went numb. I couldn’t

My loved ones who knew I was having a panic attack about this told me, “Oh this could be the result of your trip and fall.” I wanted to believe them and go along with their theory, and I eventually agreed it could be a possibility. I never really believed it fully, but I wanted to.

The fear that I felt that day will stay with me for a very long time. It’s the type of fear that consumes you and changes you. It definitely changed me.

ANGER – Frustration, Irritation, Anxiety

Oh, I have visited this stage and camped out here for a spell. Heck, I think I have bought a house in this stage, renovated it, and redecorated. I know this phase so well. I have felt angry, and why not? I’m allowed.

I did everything I was supposed to do to ensure that I didn’t suffer the same fate as my mother. I started getting yearly mammograms at the age of 25, and sometimes, I had to go twice a year. With every mammogram, I had an ultrasound done due to having dense breast tissue (aka fibrocystic breast tissue). I had multiple fiboradenomas, and multiple biopsies.

At the age of 30, doctors found my breast cancer at stage 1b. I “caught it early.” I went through absolute hell and back for almost 2 years – a lumpectomy, chemotherapy (including anaphylactic shock), radiation, double mastectomy, and reconstruction. Still, to this day, I experience legit flashbacks if I ever get lightheaded and dizzy because that’s the sensation I felt before anaphylactic shock.

I. Did. It. All.

My oncologist threw everything but the sink at me, and I came out of that period of my life scarred and shell shocked. I even had my oncologist repeatedly tell me that the odds of it coming back were so small because of the early stage and aggressive treatment. I did everything I could to prevent this, to not end up like my mother, and it still fucking happened. This should make me angry, and it’s okay to be angry. I’m not going to pretend to be someone or something I am not.

BARGAINING – Struggling to Find Meaning, Reaching Out to Others, Telling One’s Story

Man, if I thought I could bargain my way out of this, I absolutely would. For real, if I had something I could offer in order to not have this disease, then I would do it. “Lara, you will no longer have stage 4 cancer anymore if you give up coff-” “DONE.”

In all seriousness, I don’t consider myself all that religious, so I don’t typically hold conversations with God. I didn’t, nor will I ever, ask God why this has happened to me because why not? Me having stage 4 cancer is not some horrible tragedy. It’s genetics.

It might also be that I don’t believe that God gave me cancer, or that I have been set on some journey. (Whenever I read ‘cancer journey,’ I cringe. It’s a disease, not a trek in the woods.)

While I haven’t had any “WHY GOD WHY” conversations with a higher being, I have been struggling to find meaning in all of this. One of the reasons why I love(d) running so much is that it allowed me to be someone other than a cancer patient. I got to be a runner, an athlete. I wanted to test my physical capabilities, especially after my body betrayed and failed me.

Life as a cancer mutant with a rare genetic condition means I live a different life. I have had a black and white view of what this body of mine does, and this diagnosis has me wondering if it just all grey. Maybe my body didn’t fail me? Maybe my body did what it just does, and I just have to navigate these setbacks and accomplishments more graciously?

DEPRESSION – Overwhelmed, Helplessness, Hostility, Flight

According to the American Cancer Society, 1 in 4 people with cancer suffer from major or clinical depression (source). I have made absolutely no secret that I have dealt with depression before. After treatment for my early stage breast cancer ended, I suffered and I struggled with my life. I had to reach out for help when it got really bad for me in my early 30s.

An October 2, 2013 article on MD Anderson’s website provides the following symptoms of depression:

  • Feeling sad most of the time
  • Loss of pleasure and interest in activities you used to enjoy
  • Changes in eating and sleeping habits
  • Nervousness
  • Slow physical and mental responses
  • Unexplained tiredness
  • Feeling worthless
  • Feeling guilt for no reason
  • Decreased concentration ability
  • Thoughts of death or suicide

In addition to medication, MD Anderson recommended the following activities to manage symptoms of depression: psychotherapy exercise, and stick to routine. The article explained, “Following a routine can help you maintain a feeling of accomplishment and a sense of control, both of which can be negatively affected by cancer and depression. A routine can also help push an individual to engage in activities they wouldn’t necessarily be motivated to complete.”

I did end up doing all of those suggestions, and it worked for me! Once I got help, started running and dumped a horrible boyfriend, I got my depression and anxiety under control. I really did climb out of the fog of depression and learned to really enjoy my life.

Now… *waves around* this.

I am struggling with the enormity of this disease, and what it’s taken from me. When I read the symptoms of depression listed above, I can say that I can check off six of those items. What I have feared for so long has come to be. For so long, I have been absolutely frightened that I was going to end up just like my mother, and now that it has happened, I’m just a scared 40 year old who wishes she had her Mom.

Be rest assured that I do have a good network of support to assist me as I come to terms with my new normal. If I can get back to running, even if at a much slower pace, then that will help me manage my depression. I also think being off work right now is playing a part in my mood. I enjoy a schedule and routine, and I also appreciated the ability to not think about cancer for 8 hours a day.   

ACCEPTANCE – Exploring Options, New Plan in Place, Moving On

What does it meant to achieve acceptance with a stage 4 diagnosis? I know and understand that my life is going to regularly consist of doctor’s visits, blood draws, scans, and sometimes surgeries. None of this will be easy, and I likely will regress back to the earlier phases more often than not. I truly believe that this phase will involve layers upon layers of events and truths that I need to accept, until I get to the final layer, the core: inner peace.

I have accepted that I have stage 4 breast cancer. It’s not like I have a choice, and I can somehow opt out of this. If I could, I fucking would. (Way too many people say that “cancer is a gift” and if that was true, I’d keep my receipt and return this.) This is my life now, and I can either fight my circumstances or do whatever I can to accept all of this and adapt. It’s not an act of bravery to accept my stage 4 diagnosis. It’s a necessity.

When I dig deeper, there are some hard truths that require reflection and acceptance. I accept the fact that I will die from this disease. I also accept that there is a possibility that I may not see my 50s or my 60s. I have to accept the fact that I may not even see 45, although I do hope that is not the case. This could all be out of my control.

As noted above, I want to achieve inner peace. This disease has forced me to rethink about what my priorities are and what they should be. I, for sure, want to figure out my new plan. I’m not going to figure it all out now. I can’t plan this out. I just have to let go.

This, I promise

Understandably, I have been thinking a lot about my priorities since my oncologist told me my cancer is Stage 4. What do I want to do with whatever time I have left. Don’t get me wrong – my oncologist at no point has told me to start getting my affairs in order and preparing for death.

However, the thing about metastatic cancer is that you have no way of knowing if you’re going to be one that responds well to treatment or poorly to treatment. Right now, as far as we know, the cancer is only in my bones: confirmed in my sternum and possibly in my spine. Cancer is smarter than all of us, and I have no doubt it’s already thinking of where it wants to go next.

As I recover from my surgery, I have been thinking about what I really want to focus on and try to achieve, and what time-sucking activities should I just let go. I hope and I pray that the side effects from the upcoming endocrine therapy will not be so bad so that I can go back to work.

I want to go back to work, I really do. I thrive in a structured environment, and I enjoy having a purpose and teaching others what I know. I’m an internal auditor, which I get isn’t like making scientific breakthroughs or saving lives. I contend that even in the normal, every day jobs, you can always make a difference in someone’s life by small acts. Maybe my enthusiasm for research and dogged determination to figure out the answer will rub off on a fellow coworker?

I also work for a company and a team that know about my stage 4 diagnosis. I truly believe that this company, if possible, will want to help fight against metastatic disease and the criminal underfunding of metastatic breast cancer research. I still have zero desire to be, what I call, cancer famous. If I have to put myself out there, though, to put a face to metastatic breast cancer and the importance of research, I will do it.

This, I promise, is my solemn vow: I am not going to go quietly. Please don’t mistake this statement as some declaration of mine that I’m going to “fight” cancer and win. Cancer is not a battle or a fight, and I’m not going to “beat it” or “win.” It is a deadly disease that will eventually kill me just like it killed my mother (hmm, maybe I shouldn’t be a motivational speaker, eh?).

Two generations of Metastatic Breast Cancer

I intend to make as much noise as I can for as long as I can about the importance of metastatic cancer research and the insidious PTEN mutation that caused my cancer. When I was considered to be an early stager, I was often described as outspoken or very vocal. Well, guess the fuck what… that’s just a preview of what’s to come. Ideas are brewing.

Metastatic breast cancer killed my mother, and I was told I had stage 4 metastatic breast cancer at the same age she was when she died. I was maybe 3 years old when my mother was first diagnosed, so this disease has been a part of my life for more than 3 decades, almost 4. I’ve never wanted to be defined by cancer, but we don’t always get what we want.

I’m not going to go quietly. I plan to do something about this, and it’s not always going to be positivity and rainbows. If I’m angry, I’ll be angry. Same goes for sad, depressed, happy, or hopeful. I’m going to feel all the feelings, and when the time comes for me to meet my mother again, I hope she knows I gave it my all.

Mets Monday: Sharon

For this week’s Mets Monday story, please meet Sharon. Before her diagnosis of metastatic breast cancer, she already had non-Hodgkin’s lymphoma. She reached out to me after my friends Carolyn and Susanne posted messages on their Twitters and Facebook asking others for more Mets Monday stories.

What was your age and diagnosis (er+, etc.)? How was it discovered?

I went for my yearly mammogram on October 22, 2013. The tech asked me why my left breast was hard. I told her I’d noticed it too and thought I pulled something at the gym. The radiologist looked at the films and saw a “shadow.” They scheduled me for a diagnostic mammogram with the teeny-tiny paddle and LOTS of pressure and an ultrasound on October 28, 2013. I was told it looked like something was pulling my breast tissue and they wanted to do a core biopsy to be safe, but were sure it was “nothing to worry about.” On November 14, 2013, an ultrasound guided core biopsy was performed. On November 6, 2013, my primary care doctor called and told me the biopsy showed infiltrating lobular carcinoma. She wanted me to see a breast surgeon to discuss the results further and plan the next steps. The breast surgeon told me the tumor was er/pr+, her2-, grade 3. She then scheduled me for a breast MRI on November 10, 2013 and gave me the name of the one and only plastic surgeon that worked with the hospital so I could set up a consultation. She also told me she’d like to work with my old oncologist to discuss treatment options. I told her I was not keen on seeing her since I had been seeing her every three months for follow-up for my lymphoma and she totally missed this, as well as ignoring my complaints of increased fatigue and bone pain in my lumbar and cervical spine. She told me the fatigue was a lasting side effect of chemo and that I was getting old and the pains were just arthritis. She also did a thorough exam of my breasts and abdomen every time I saw her. I didn’t do well on the MRI. The machine was malfunctioning and was very hot and my chest was killing me pressed against the plastic stand with holes for my breasts. The heat and pain was so bad, I asked them to stop the MRI because I was going to be ill. They told me no. I said, OK, you can clean the vomit out of the machine. They shot me out of there like a cannon and ran in with a pan which I proceeded to fill. End of MRI. By this time, I’m noticing that my left nipple is starting to invert. I’m thinking, “This is not good.” The breast surgeon schedules me for yet another core biopsy – same results. I’m thinking about the definition of insanity that I learned long ago. Meanwhile, I’m waiting for my previous oncologist’s office to call me for consultation. The breast surgeon called her after the MRI and I was discussed on a “tumor” board. It took a full two weeks for the oncologists office to call (on November 25, 2013) and they wanted me to wait another week and go to see her in an office not where I work, but 120 miles round trip from my home. I had a bad feeling about the progression I was seeing, I could now feel a large mass in my breast. I also did a self exam in front of the mirror (all my self exams were done in the shower like I’d been taught). When I lifted my left arm the entire outside of the left breast caved in. I called Cancer Treatment Centers of America. My first contact wanted to wait a couple of weeks to get me in for a second opinion so they would have time to get all the tissue and reports from the breast as well as the lymphoma. I told him I was certain it was in my best interests to see someone sooner rather than later. My husband and I saw the intake oncologist on November 29, 2013, the Friday after Thanksgiving. The rest of the appointments were not scheduled until Monday and Tuesday. He asked why they had put me through two biopsies when it was evident that the tumor was aggressive. I told him is guess was as good as mine. He told us he wanted us to have a PET scan the next day. My husband and I had intended to go home and stay overnight on Sunday, we had no clothes. He agreed to schedule the PET scan for Sunday. On Monday, I got the results. Stage IV infiltrating lobular carcinoma with “innumerable” mets to the cervical, thoracic and lumbar spine and “a few” mets to the sternum. I was 54 years old, post menopausal due to early onset menopause from chemo in 2009.
 Sharon

 

What is life like a metser?

At first, it was overwhelming and way too much to process. The person at CTCA who gave me the diagnosis was a surgeon, not a medical oncologist and he did everything CTCA doesn’t stand for. He showed no respect or compassion and was very blunt. I almost left in search of another breast center, but my hubby prevailed and asked me to give the medical oncologist a chance. I’m glad I did, I couldn’t have a better oncologist. But, I was so upset I vomited through all my appointments on Monday and cancelled the Tuesday appointments. I didn’t stop until Wednesday. While I was there, the MO gave me a shot of Xgeva, and a prescription for Anastrozole. The naturopath recommended supplements and gave written instructions to my husband. I scheduled an appointment for March. Now I’m living with a chronic disease. I don’t know how long I’ll be here, but I do know women are starting to survive 10 years or more. I’m hoping to be one of them. The Anastrozole is taking a toll on me, but it’s also kicking the cancer’s butt. At diagnosis, my breast tumor measured 8 centimeters. In March, 2014, it was 1 centimeter. I had a PET scan in July and NONE of the mets were active. My December PET showed one “hot spot” – L4, where I also have some of my arthritis. I do what many of us do: work to educate myself, to be my own advocate, find others who have shared experiences and seek their counsel, give support and hugs when I can and learn to accept them back. I have the standard “Mom” bucket list…I have one son and I want to see him with someone he loves with all his heart who loves him back. Checked that off, he’s marrying a wonderful person in November of this year. Now I want to see my first grandchild. Who knows, if people start spending money on research, I may see that grandchild grow.

Before your diagnosis, would you say you knew anything about breast cancer?

I have dense breasts, so this wasn’t my first rodeo with a biopsy. I had a stereotactic biopsy of my right breast when I was 40. It was pre-cancer (hyperplasia) and has never progressed. I got mammograms every year, did self exams every month. I wish I would have known to hunt for lumps in the shower but look for dimples in front of the mirror. After diagnosis, I did a little experiment. I asked close friends with large breasts if a) they did monthly breast exams (they did), and b) if they ever stood in front of a mirror and held up their arm and looked at the corresponding breast (they did not, but you bet they do now!). The only person that might have seen this sooner was my oncologist. My arms were over my head every three months, I complained about increased fatigue and pain in my cervical and lumbar spine, but she never connected anything. I broke two ribs doing nothing, the oncologist said I fell I just didn’t remember (I didn’t). My primary care doctor took me at my word and sent me for a bone scan (lymphoma loves bone marrow), but it only showed the broken ribs. I remember my oncology nurse well. She told me at the first infusion when I had an allergic reaction to one of the chemo drugs that if I had to have cancer, large B cell non-hodgkins lymphoma was the one to get. Fast growing, so chemo is perfect for it, but not too aggressive so there is no time to put it in check. She then said, “At least you don’t have breast cancer. You are never cured of that.” How prophetic. So I still have my breasts, I will probably never have chemo and I’ll just run through the list of Aromatise inhibitors until they no longer work, hopefully far into my future. So no, nothing prepared me for this, but nothing will stop me from fighting it as long as I have the strength either.

What do you wish other people knew about metastatic breast cancer?

Women with metastatic breast cancer are some of the strongest, most giving people I know. Breast cancer, especially lobular, is very sneaky. One minute you’re fine or “cured” when actually you may be one circulating tumor cell away from a death sentence. Breast cancer is serious stuff, it’s not all pink ribbons. Being permanently disfigured and devastated by side effects doesn’t give you a pass either. What does “prevention” and early detection do? How many lives does it truly save? I watched 60 Minutes last night. One of the segments was about clinical trials to treat neuroblastoma by injecting modified polio virus into the center of the tumor. Where are the trials to CURE stage IV breast cancer? They have made great strides in palliative treatment, that’s a long way from a cure.

What makes you happy?

My family, including my dogs, and the courageous women I’ve gotten to know. I joined a closed Facebook breast cancer group before realizing that most of the women were just starting the fight. I did however meet a couple of women who were where I am or further along in the struggle. When I went to visit a friend in Jacksonville, Fla., we drove down to Cocoa Beach so I could meet one of the women I met in the group. She has rods in her spine and femur and a smile on her face and a big hug and an amazing kinship with other woman, I felt like I knew her forever. We will always be connected.

What advice would you give to someone who really wants to help those with metastatic breast cancer? (This either be for a friend, stranger or someone who had early stage breast cancer.)

Don’t write us off, we’re not done yet. We don’t know our expiration date, but neither do you. Don’t define us by our diagnosis, we’re the same people we always were, but maybe a little better…stronger, more compassionate, more hopeful, more contemplative. Don’t throw pink ribbons and butterflies in our face, there but for the grace of God go you. Fight for a cure, not “awareness” or “early diagnosis” — the life saved by that cure may be your own.

Mets Monday: Susanne

For today’s Mets Monday, let me introduce you to Susanne.  This is her Facebook page and her GoFundMe page.

When were you diagnosed (initially and then at stage 4, that is, if you were not stage 4 off the bat) and at what age?  What type of breast cancer (i.e., er+ or triple neg)?

I got the call that the biopsy came back positive for cancer on November 19, 2013. A couple weeks later, a PET scan and a second biopsy confirmed it was already metastatic to the liver. I’m ER/PR+, Her2-, invasive ductal carcinoma.

I was 39 years old.

What is life like as a metser? 

Not easy. Coping with this for me is a weird dichotomy of knowing I’m going to die, and hoping I’m going to live. I wrote a blog post a while back comparing it to a Hail Mary pass in a football game. You’ve got four seconds left on the clock, and you know you’re going to lose the game, but you still keep your butt parked on the bleachers because those Hail Mary passes can and do sometimes happen in those last few seconds.

I spend time getting things ready for my funeral, arranging a pre-pay insurance, writing the obituary, figuring out what hospice I want to use, that sort of thing. It feels like the more I plan and get out of the way, the freer I am to live my life and not worry about the details. I plan for my death so I can live.

I don’t want to die. Last night I had a sobbing, screaming panic about reality. I don’t want to die. I want to be able to stay here forever, I want to grow old with my wife, I want to see the first humans on Mars, I want to be a little old lady in a nursing home someday weirding out the CNAs and decorating my room with print outs of cat macros. I don’t want to die. It’s not fair. I have so much I wanted to do, so much I still want to do. It’s not fair.


Would you say the general public as a whole knows a lot about breast cancer?

No. They know it exists, but not much beyond that. There is awareness, but pink has normalized breast cancer to the extent that we no longer think of the dying. People are aware that breast cancer is a thing that happens, but nothing more. It’s assumed that people don’t die from breast cancer anymore, that there’s a cure now, it’s just an easy rite of passage of womanhood and it’s nothing to worry about anymore.

It’s not even a chronic, treatable disease. It’s killing us and it’s not slowed down in decades. It’s not a pink, pretty, sexy, easy disease with a free boob job. We’re dying. And the general public doesn’t really know nor care.

 What does “breast cancer awareness” mean to you?

It means making the public aware that pink ribbons don’t save lives, early detection doesn’t “cure” breast cancer, and that if you have breast cancer, you’re at a risk of metastasis, period. It’s not a disease that strikes older women; young women can get it too. It’s not even a woman’s disease, men get breast cancer, and the general public isn’t aware of this. There’s awareness of a generic concept of breast cancer, what we need now is awareness of the reality of this disease. That’s seriously lacking.


What type of misconceptions about breast cancer have you encountered?  Has anyone ever said something ignorant to you, obviously not knowing what stage 4 breast cancer is?

I’ve been told that breast cancer is a ‘rite of passage’. Someone expressed relief when they found out I had breast cancer, because it’s one of the “good ones”. I was told “your hair’s growing back, though. That’s good, right?” when I was trying to explain that I was never going to be out of treatment for metastatic breast cancer.

What makes you happy?

My wife, primarily. This has been incredibly hard on her, and we have so many regrets and fears and anger about having our years together robbed by this. She is everything to me. I fight so hard against this disease because I want to stay with her forever.

SusanneJennEngagement03

What advice would you give someone who truly does want to help the breast cancer community, especially those with metastatic breast cancer?

Pay attention to where the money goes. Don’t assume that because it’s a pink ribbon, it helps anyone. There’s a multi-million dollar merchandising industry being built on the backs of the dead and the dying. Be aware of how little goes to metastatic research. Be aware that you’re not “in the clear” at any magical point. A cure for metastasis is a cure for you too. Be aware that breast cancer is being normalized and sexualized and turned into a profit machine. You are worth more than your breasts. Be aware that mammograms are not perfect. For younger women, they’re often ineffectual due to the density of breast tissue. Even for older women, they might not always show up on scans.

We deserve more, we deserve better treatment, better awareness, better research into a valid, viable cure which will benefit all stages. The death rate from metastasis has not changed over the last 40 years. Early detection isn’t saving lives. We need funding into research, and we need people to be more aware of what their dollars support.

But perhaps the most important thing is to let us have our voice. Don’t hush us up or put us in the corner and give us bare bones acknowledgment because we’re your worst nightmare. We’re dying. Don’t begrudge us our remaining time to have a voice to speak out against this disease. Don’t tell us we’re wrong when we point out the stats and the funding. Don’t defend those who want us to be quiet. You might find yourself walking in our shoes. If you don’t want to be where we are, let us try to make history and give us enough awareness for a shot at finding a cure.

We’ll be quiet enough when we’re dead.

Please visit METAvivor and Live from Stage IV for more information.