pten mutation

Good-bye 2020

Like everyone else in this whole wide world, 2020 was a giant dumpster fire of bad news, cancelled plans, and overwhelming feelings of isolation. A couple of weeks ago, I underwent my first ever brain MRI that my oncologist ordered. I had been experiencing more headaches than normal, and I had episodes of complete forgetfulness which worried me.

First of all, MRIs in general are just anxiety-inducing procedures to begin with. During my MRI, I did not have any option to listen to music. As a result, I spent the 35 minutes in the MRI tube trying not to think about the very enclosed space and cage around my face. I did try to go to my happy place, but the sounds of VMMMM VMMM DUM DUM WHIRRRRR, or a combination thereabouts, prevented me from going to my happy place.

Also, similar to that gut feeling I had when I pushed my oncologist to order the CT and bone scan, I honestly felt like something was there. Guess what? I was right. (Yay me.)

I have a 9 mm (approximately a 1/3 inch) tumor in the back of my brain. When my oncologist told me that news, I just broke down. When I thought I was just dealing with a met to my sternum, it was one thing. Oligometastatic, if you’re going to have stage 4 breast cancer, is the diagnosis you want because the good prognosis and life expectancy odds are in your favor.

However, the idea that I could be also dealing with brain mets not only pulled the rug from underneath me, it beat the shit out of me with a bat. I mean, come the fuck on. This is a lot for anyone to deal with. I knew that even if the brain tumor turned out to be benign, the fact that I had metastatic breast cancer, a brain tumor, plus all the bullshit that comes with Cowden’s Syndrome, felt downright unbearable.

ESPECIALLY IN A FREAKING PANDEMIC. It’s not like I can meet up with my friends for support, or travel down to my parents house for Christmas like I had really wanted to. I spent Christmas by myself (well, my dogs are with me). As a result, I lost it. I cried a lot, and both my anxiety and depression took the wheel, while I stayed in the backseat curled up in a fetal position. I wrote in a notebook how I really and truly don’t want to be anyone’s idea of inspiration or strength. Let me be weak and cry, and for the love of pete, do not put me on any pedestal. I hate that shit.

I’m human, and I’m doing the best that I can. I’m not going to put on a brave face to make anyone feel comfortable.

Finally, after consultations with a neurosurgeon and my radiation oncologist, my team of doctors all agreed that this tumor looked like a typical meningioma, and where it was located in my brain further suggested that it’s a benign tumor. However, since this was the first ever MRI of my brain, the neurologist can’t say with 99.9 percent certainty without a second scan. If this tumor doesn’t appear to have grown in between scans, she can say with almost complete certainty that this is benign and let’s just keep watching it.

If I didn’t have Cowden’s Syndrome, she would have re-scanned me in 3 months and then 6 months, and then so on. Since I have stage 4 breast cancer, they are going to scan me in 4 weeks or so (pending insurance approval), and then every 3 months for a period of time. We will only talk surgery if it looks like it’s growing or I’m symptomatic. I am a-okay with this plan because I have zero desire to have brain surgery unless it’s necessary.

Oh look, there have been research into the frequency of meningiomas in patients with Cowden’s Syndrome: Hidden association of Cowden syndrome, PTEN mutation and meningioma frequency (source). Fun, super duper fun.

I’m not surprised that 2020 ended with one last punch to my emotional well being. This year, I was told that my breast cancer is now stage 4. I missed out on my own planned 40th birthday party, my beloved niece’s high school graduation, and a trip to Maine with my best friend. I spent every holiday at home by myself. Why not add a brain tumor to the list?

In an effort to put a horrible year behind me, I will do my best to recap and focus on the good things that happened (or, in my case, the not so terrible news):

My brain tumor is certainly benign.
My cancer appears to be only in my sternum still, not widespread.
I still have my job, and in fact, I got a promotion!
Management at work has been so wonderful and supportive to me. My boss, and boss’s boss, have been the epitome of caring toward me. I will honestly work for them as long as I can.
Countless friends have helped me and showered me with love in 2020. They sent generous gifts, bought Huffman rules clothes, and sent me money. Because of my loved ones’ generosity, I have been able to save more money and prepare myself for the rainy day that is coming, and it is coming fast.
Last, and certainly not least, my boyfriend has stood by my side, and he makes me feel like the luckiest woman alive. (Never thought you’d hear that coming from someone who definitely did not win the genetic lotter, huh?)

Yeah, 2020 sucked royally, and my life will never be as it was. It’s okay. If my only win this year was that I survived, I’ll take it.

Some Type of Normal

For the first time in almost two months, I went for a run today. Well, it was more like a “jog” than a run based on my effort and time. Still, it does not matter. I put on my running shoes, and I moved this body of mine 3 miles around the Northside of Pittsburgh. I decided to stay in a relatively flat area because I am nowhere in the shape to conquer hills.

I went down the path on River Ave and just focused as much as I could on my form and breathing. When I run, I can clear my head of all my worries and anxiety. This run was different because I wanted to be even in more touch with my form, my breathing, and my general sense of being.

With each step, I made sure to step as light-footed as possible. I don’t want to be hard on my knees, ankles and shins, especially since Aromatase Inhibitors are brutal on bones. By the time I reached around Heinz Field, I began feeling pain in my ankle. Never in my life have I ever had problems with my ankles. If I had to guess, my AI was the cause of that ankle pain.

Since my hysterectomy, I have only managed to walk 2 miles at the most. I ran 3 miles today! My pace was 13:40, which is 2 minutes slower than my pre-MBC time. Honestly, now that I am dealing with metastatic breast cancer, every completed run is a win. Besides this blog post, there will be no more comparison to who I was as a runner before MBC , because that Lara is gone and she ain’t coming back. I won’t waste time mourning something I can no longer change if only I trained hard enough.

I don’t have the time.

This is a new normal, and I’m going to adapt to it. I used to to say I took up running because I wanted to see what my body can accomplish after cancer showed me how my body failed me. I was wrong. I was so wrong. My body didn’t fail back then. It did what it does – it formed cysts and tumors. I see it clearly now, and it came to me during my run today

My body, this ever-involving flawed vessel that carries me around, is amazing and capable of so much. It endured the violent onslaught of early stage cancer treatment. It… I have ran thousands of miles, finishing races that most people don’t even try or can do. My body has been beaten up, both by illness and by my own making, but I endure. I have fucking endurance.

Don’t get me wrong – I don’t think I can beat stage 4 cancer, and this is not where I’m going with this. My goal is to endure for as long as I can, and it is going to be accomplished by one, slow run at a time. I’m going to keep moving and stay upright for as long as I can, and when it’s time to rest, I will know I gave it everything I could. The miles I log will tell my story.

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.

Denial
Anger
Bargaining
Depression
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.

Get Up Swinging, or just get up?

On Friday, I went into the hospital for my complete hysterectomy, which marks my umpteenth surgery. Honest to dog, I have lost count how many surgeries I have had. I know I am in the double digits, but I would have to put pen to paper to figure out just how many times I have had surgery. My friend Amy and I joke about how many times we’ve both had surgeries. I feel like I should have a punch card, and she thinks we should have a hospital wing named after us.

The gyn oncologist was able to complete the surgery laparoscopically, and now I have four new stab, er, surgery wounds. My abdomen honestly looks like an abstract work of art. Instead of brush strokes, it’s just scars, radiation burn, and stretch marks.

What message do you believe the artist is trying to convey?

Hmm, the message I’m receiving is surgery. Just a lot of surgery.

The gyn oncologist didn’t encounter any complications, and I got released after spending one sleepless night in the hospital. I can never ever ever sleep when I’m in the hospital. I ended up texting a friend on the West coast around 1:30 am in the morning, and then watching episodes of American Greed on CNBC.

I am now home recovering. I am not allowed to drive for two weeks, and I cannot lift anything more than 10 lbs for six weeks. My boyfriend has been taking great care of me, even though I know I am driving him crazy. I have a hard time relaxing and asking for help, so I putter around my 1st floor a lot instead of just laying down and relaxing.

I know sooner than later, I am going to start feeling the side effects of this surgery: mood changes, hot flashes, and fogginess. I am grateful I have ability to take time off work to recover from this surgery and adjust to this new normal for me. My managers at work have been absolute freaking fantastic toward me and what I am up against. Their support has taken a giant load off my shoulders, and they have made it crystal clear that my first priority should only be my health and recovery.

This week, I should be completing radiation simulation. What is radiation simulation, you may ask?

Positioning is extremely important in radiation therapy. Your body will be positioned carefully in order to get the best radiation treatment. You will be in the same position during every treatment, and you will have to remain still. To stabilize your position, you will probably be asked to lie in a special “immobilization device” on the treatment table.
There are different kinds of immobilization devices. Some look like a cradle; others look like a foam box that is shaped to your form. You will not be trapped or closed in. You may be asked to lie down in a custom-shaped mold that just touches your back and sides; or your treatment center may use a “breast board” that places your head, arm, and hand in a fixed position. Unfortunately, no padding can be used on the treatment table or positioning devices because that makes your treatment position less precise
https://www.breastcancer.org/treatment/radiation/types/ext/expect/simulation

Also this week, I have an appointment with my medical oncologist to discuss what AIs I will begin taking. Now that I have had my hysterectomy, this should make the discussion on what I can take a little easier. With AIs (aka Aromatase Inhibitors, or endocrine therapy), I am definitely going to experience side effects and this will require an adjustment for me.

None of this is going to be easy, and there will be tears and frustration. I cannot promise I am going to be the same Lara that I was before, but I will reach out for help when I am struggling. I may get angry and mourn the life that I used to have. It’s okay to not know what to say to me or how to act around me. I don’t know what to say or how to act either. This is new territory. I am not going to “beat” this, and I will be in treatment for cancer until the day I die. I am not a cancer survivor. Now, I just want to be a thriver.

I may not get up swinging, but I will do whatever I can just to get up.