Month: October 2020

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.

So Much Love

Ever since my Stage 4 diagnosis earlier this month, I have honestly felt like I have been living in a waking nightmare. How is this real? I cry a lot, and I’m often stricken by fear and anxiety whenever I think about the enormity of having metastatic cancer.

Am I going to make it to 45?

Will I be able to outlive my dogs?

Will I see all my nieces and nephews graduate?

How much time do I have left before I can no longer work?

I try my best not to let the fear overtake me but I do acknowledge that there is nothing wrong with trying to come to terms with my mortality. I have no desire to live in denial. However, I have to remind myself that I cannot afford to live whatever time I have left with one foot in the grave. That’d be the real tragedy of this disease.

Whenever these thoughts and emotions get to be too much, I am doing my best to lean into the love that I have been shown. My goodness, I have been showered with so much love and care that it has made me cry. This time, happy tears though.

To the surprise of absolutely nobody, I was a giant nerd in high school and had maybe 3 or 4 friends. My hair always looked like a frizzy mess, and I wore glasses covering up half of my face. (Why weren’t glasses trendy when I was in school? Whhhhhyyyyyy?) My stepsister, who is my age, was the popular one, and I absolutely resented that if anybody knew who I was, I was known as only her stepsister.

I got bullied a lot, and after awhile, I believed the bad things said about me. I was more inclined to believe the bad and second-guess the good. Sad thing is, I still do it. My instinct whenever I receive a compliment is either to: a.) make a joke, or b.) completely ignore it because acknowledging it makes me so uncomfortable.

If you compliment me or show me affection, IT TRIGGERS SOME SORT OF FIGHT OR FLIGHT RESPONSE IN ME.

This trait of mine might have been quirky before my cancer recurrence, but now I am finally realizing that these lies I have told myself are apparently not true. Who would have thunk? Did it take a metastatic cancer diagnosis to finally snap me out of this “haha, I’m a nerd and nobody notices me” mindset?

Don’t get me wrong – I still do not like attention, and I will not be seeking any spotlight. I don’t desire fame, and this will not change. Once I recover from surgery and adjust to my new normal, my focus will be on researching my own disease and advocating for research.

Friends, loved ones, coworkers have expressed such raw, genuine emotion to my news. Tears have been shed, and I have been on the receiving end of so much love and kindness. I have been drowning in my own fear and sorrow, and I have been reminded dozens of times over that I am loved. Friends and loved ones have shown up to take me to appointments, sent me meals, money, and have contributed to my Huffman Rules fundraiser.

I am so unbelievably grateful, and words cannot adequately express how thankful I have been. All these years where I have believed I have been flying under the radar – turns out, I’ve been popping up on radars here and there. Oh no, my cover is blown!

From the bottom of my icy cold heart, thank you thank you thank you thank you. I, of course, hope that once I heal from the surgery and have been on a steady endocrine therapy, I can get back to some semblance of normal. I want to go back to work. I definitely now want to go on vacations that I have been putting off. I want my siblings’ kids to know without a doubt how much I love them.

I have a lot to do.

Fundraiser

During my radiation appointment, MyChart sent me a notification that I had a new bill. Well, apparently all my bills decided to just gather together, hang out, and then pop up on my doorstep on the same day. When I saw the amount owed, it actually took my breath away.

I’m on short term disability until end of November, so I can’t break out my camera and try and earn extra dough. I’m not allowed to lift anything more than 10 lbs, so my 20-plus-lb camera bag is definitely off limits.

With the help of my friend Nancy, I created my first Bonfire campaign – the Huffman Rules campaign. If you want to help out a cancer patient, here’s your chance.

https://www.bonfire.com/huffman-rules/

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.

10 Years, 10 Days

September 22 marked 10 years since I learned that I had Stage 1b breast cancer. 10 days after that, I found out that my breast cancer has returned, but this time, I am stage 4. I have metastatic breast cancer, which means it’s treatable, not curable. I will be in treatment for the rest of my life, however long that may be.

Let’s back up a couple months. In early August, I tripped and fell during a trail run, and I body-slammed myself into the ground. Not only that, I was wearing a hydration vest with two detachable water bottles located at each boob. One second I was running and the next second, I found myself face first on the ground, feeling like I had the wind knocked out of me times 100.

My boyfriend ended up taking me to the ER, where the doctor ultimately diagnosed me with a chest wall contusion and a concussion. The chest X-ray and spinal X-ray didn’t show anything concerning.

In early September, I had routine bloodwork ordered by my oncologist done. He had been monitoring my rising CA 15-3, which kept slowly rising over the previous year or so. Dr. C didn’t seem concerned about it, but I certainly was. Dr. C knows cancer, but I know Lara. To ease my concern, Dr. C told me that he would normally just re-test the tumor markers in 3 months and see, but he knew I was very concerned. He said that he would order a bone scan and a CT scan to put my worry to rest. (Haha.)

Both scans showed potential metastatic disease in my sternum, and the CT scan showed a potential lesion in my T11. When I learned this, I did not take the news well at all, and why should I? I had the worst panic attack of my adult life and had to take off work for the rest of the afternoon. I went numb in my face, my abdomen, and I lost feeling in my hands. I knew that day this was it.

My loved ones repeatedly said, “No, no, no. These scans are showing the result of your fall.” Fair argument, and at times, I did want to believe it. Ultimately, deep down, I knew this was stage 4 due to the fact my tumor markers were high. I have always known this was going to happen because this is what my body does.

I had a bone biopsy of my sternum, and not going to lie, that was one of the most horrendous procedures I have had done. When the radiologist inserted the needle into my sternum to numb it, I screamed in pain. While screaming, I heard them say, “Be still!” Hahaha, fuck you. I’m doing my best.

Fast forward to present day, it appears that my cancer is contained in the sternum and has not traveled to any other organ. If that is indeed true, then that is a big WIN for me. (I learned a new term – it’s called oligo.) It means we can radiate the cancer in my sternum to high hell, and then I start taking an AI. No need for chemo for bone mets. My other “good” news is that the metastatic breast cancer is estrogen and progesterone receptive and Her2 negative. That means I have a lot of options in AIs. The goal is to get the cancer back to zero and keep it there for as long as possible with AIs.

Am I devastated? Oh God, yes. I am gutted. I cry a lot. This is my literal nightmare come true. My mom was also diagnosed with Stage 4 breast cancer when she was 40, and died before she turned 41. How can this not mess with my head? I am my mother’s daughter.

I have to take all this minute by minute, or hour by hour, or day by day. I have a great support system here to throw me a life preserver when I feel like I am absolutely drowning. My team of doctors does include a psychiatrist to help me deal with the emotional bitch-slapping that stage 4 cancer brings.

I guess this means Get Up Swinging is back. Instead of making one billion phone calls after each update, I just plan on updating this. I need to get back to my introvert ways, and keep my inner circle small. All these phone calls have left me just absolutely drained and exhausted. I understand people who care about me want to check in with me and make sure I’m okay, and I am very appreciative. I also want to eventually transition to an easier way to keep anyone who cares apprised of my health.

Plus, this will be the best way to document how I keep cycling through the 5 stages of grief, and vent about cancer-related topics that piss me off (i.e., inspiration porn, or calling cancer a battle). Also, OF COURSE I WOULD BE DIAGNOSED WITH STAGE 4 BREAST CANCER DURING BREAST CANCER AWARENESS MONTH. Argh. It’s like pouring salt in a large gaping wound.

So… stay tuned?