Bad Right Breast

I've Always Hated My Right Breast!

BONE TREATMENT – injection vs infusion May 29, 2020

Filed under: cancer,Hormone Therapy,stage 4 Metastatic — Bad Right Breast @ 5:51 pm

Good news first! My metastasis is not anywhere else in the spine. My chest scan on Tuesday is all clear, and only shows the areas as seen before (T8-10, & T12). The next scan is pushed to 3-4 months to give the current targeted therapy (Abemaciclib) as much time as possible to work. More waiting….

Now onto the not so good news. At my last monthly injection of Lupron (aggressive hormone therapy to combat my estrogen receptive cancer, which is how it progresses in my body), my doctor admitted that she wanted me to also receive a monthly injection of Denosumab, to help strengthen my bones (to prevent bone loss and fractures). However, my insurance company denied it.

For the past month, she battled with them. But still 4 weeks later, they denied. However, they did approve another drug, Zometa. However, it can only be given through an IV, aka infusion. And tests have to be run each and every time prior to ensure that my kidneys are in order.

So an appointment that I thought was only going to be 30 minutes tops turned out to be nearly 3 hours. First, check of all vitals (temp checked a total of four times thus far due to COVID. An update with the doc and nurse practitioner. Then the blood draw – five large vials. One of which we wait on my kidney results. (Another was guaranteed to be a liver check, most likely for cancer but I really know it’s for my doc to keep track of my drinking – listed as LOTS on my chart).

After my kidneys were given the all clear, the Zometa infusion commenced. What is Zometa? Well, according to drugs.com (cause that’s where I get all of my drug info), it slows bone loss and prevents fractures, and used to treat bone cancer that spread from somewhere else in the body. So, it’s like it’s made for me!

Once the infusion was complete, I got my Lupron injection in my bum. And then I was out. So I ask you, how is it that the insurance company is ok with a nearly 3 hour infusion, using 4x the materials, occupying twice as many staff resources, an additional blood test needed with immediate results – how is all of that cheaper and better than a 2 minute injection?

Not to mention the PTSD involved with sitting in the chair for hours.

Good job CIGNA.

 

My First Mother’s Day & I Can’t Indulge May 9, 2020

Filed under: cancer,radiation — Bad Right Breast @ 8:07 pm

For the past 11 years, I have managed one of the largest annual events in Central Park – Japan Day. It’s a single day event celebrating the culture of Japan, that gathers on average 50k+ people. My staff of 30+ would work nearly 36-48 hours straight to load in, operate and strike the event (over 30 tents, generators, sound system, LED screens, food & activity tents, signage, and so much more).

Every year, the event falls on Mother’s Day, so every year I miss the chance to indulge with my family, even though seeing the handmade cards displayed at 4am and their faces for a fleeting a moment through the massive crowds have always been a delight. I even worked through it following my treatment 8 years ago, as my 30 radiation treatments ended on April 17th. What with the pandemic canceling the event this year (which was bound to be stellar given the 2020 Tokyo Olympics), I was looking forward to the moment I’ve always craved – homemade eggs benedict (which Graham has mastered).

But starting last Saturday, the day after my last radiation treatment, I started experiencing extreme acid reflux, which my oncologist through tele-medicine diagnosed as mucositis, and can take 2-8 weeks to subside. The effect? Extreme pain any time I eat or drink anything.

This has turned my diet to watermelon, yogurt, pedialyte or Recoup (see http://www.recoupbeverage.com) and Coke – thank you Katherine Marks! So while I’m losing weight, down 8lbs so far, my stomach growls so much that it can almost be heard over zoom meetings. I sleep until about 3-5am and then have to move to the couch to continue sleeping upright.

Meanwhile, my med intake, which before all of this was only one pill a day, has now turned into 5-6. And I’m starting to feel hot flashes, but with the nervousness about the virus, I’m checking my temp 2-3 times a day (still 97.6). I’m hoping to get an appointment next week to see if I have the antibody.

So my indulging tomorrow will be more time at our garden, which is what’s been helping me stay sane through all of this, just as it did eight years ago when Jenny saw my bald head and gave me a plot.

But since May is the month of Mom (my birthday is on the 30th!), I’m hoping to indulge on those eggs Benedict then. In the meantime, I’ll be working on my killer bod, keeping busy with my work from home and finding zen once again in the garden. All in all, it’s still a pretty wonderful time.

Happy Mother’s Day to all moms of all kinds out there. As I feel all caregivers at this time should be celebrated, so please indulge if you can.

 

Day 10 – done, now what? May 1, 2020

Filed under: cancer — Bad Right Breast @ 11:09 pm

The mixed feelings of adrenaline and exhaustion are, well, exhausting. I woke up this morning knowing that in a couple of hours I will have gotten through radiation, but then starting my next steps.

Once it was all done, I got my certificate and rang that bell (or tried to), and I was overwhelmed. Overwhelmed that it was over, but then also knowing that I was heading into the area that led me into the deepest depression eight years ago. The waiting. I always say that the waiting is worst than finding out you have cancer.

So I rang it and left and walked across the street to my oncologist’s office. After I once again got my temperature checked, for the second time, I chatted with the nursing staff (handed out donated masks from my army of friends), and was then led to get my vitals – blood pressure, pulse ox, temperature (#3), and weight – this happens each and every time I go to my oncologist.

I was led to the ever fearful infusion suite. Except I wasn’t getting chemo, I was getting my Lupron injection, along with Anastrozole, will be my hormone therapy for possibly life. I got comfortable and waited for my Dr. Oncologist. It was good to see her, the first time since my initial meeting in early March that started all of this.

She asked about my pain from radiation, which I admitted to her. She then called me out. “Did Graham tell you to call me?” (hang head in shame) “Yes.” She then said matter-of-factly with her staff present, “Next time, you need to listen to him, because we could have given you a simple steroid injection that would have relieved it all.” Ok, lesson learned.

She gave me the instructions for my targeted therapy to start on Monday, and once again mentioned that the moment I suffer any side effects that I must call her. Apparently, I have a habit of dealing with crap on my own.

She then said that now that since we have the mid to lower torso taken care of, she’d like to do a scan of my upper torso and chest, and possibly a bone density test. She was concerned about how I felt coming to the hospital. I said as long as it was a sunny day I had no problem biking in!

She traveled to her next patient as a nurse came to once again check my temp, and draw my blood – 4 vials. After another 5 minutes, another nurse came to give me my injection, right in my bottom.

The issues at hand are waiting for the insurance company to approve things – a monthly injection (same time as my Lupron) to build up my bones, the chest scan and then the bone density. As of catching any cancer early is more costly than when it becomes deadly.

So that’s where we are. More waiting. But spring is here, and I’ve got plants to put in the ground. I’ve got planning to do for work for the multiple scenarios we have to plan for given the pandemic, and so much more. So I’ll keep myself busy and out of my head. And work on my podcast….that’s right.

So while I wait, for two months, I have a test for you. Thanks to the incredible staff at Mount Sinai West, I got approved to record my last radiation treatment, the fastest one to date. Find a spot and get comfortable, before you press play. For almost 8 minutes, you can’t move, whatsoever. Just sit there, listen to the drones of the machine, the zap of the radiation. All the while the little box on the ceiling above you, a few feet away from your face reads: CAUTION – AVOID EXPOSURE. LASER RADIATION IS EMITTED FROM THIS APERTURE. How comforting, right?

 

Day 9 – one to go April 30, 2020

Filed under: cancer,radiation,stage 4 Metastatic — Bad Right Breast @ 10:56 pm

When you start, this day feels so far away. Whether it was 10 treatments or 30 treatments. To know that I’ll go to sleep tonight and wake up to go to my last treatment, it’s bitter sweet.

Eight years ago, I really got to know the staff. I’m already a bit of an extrovert, so seeing the same people, Monday through Friday for 6 weeks, it was easy to get attached. But I remember the feeling when it was over. Bitter sweet, to say the least.

This time around, I knew that I could get through 10 treatments. That wasn’t the problem. I didn’t want it to become normal. But it’s hard not to. From start to finish, I pass through a minimum of five people, sometimes more. But for these people, those in healthcare, I can’t imagine.

To say thank you, isn’t nearly enough. All we can do is give them the little signs of gratitude – donated masks, daily cheers, butterflies on the wall. And hope, just hope that they know how much we appreciate each of them.

 

Day 8 – 2 to go! April 29, 2020

Filed under: cancer — Bad Right Breast @ 10:25 pm

Overcast day and birds abound! Loon flying overhead, and a small flock of geese are protecting their new goslings.

Everything was like clockwork. I got there early despite the casual bike ride. They brought me in early, and 11.5 minutes later I was out.

I relished in the fact that I was in and out so easily today, knowing that the next two days are full of scans, follow-ups, injection and starting the next phase.

So for now, here are the goslings.

 

Day 7 – why I write April 28, 2020

Filed under: cancer — Bad Right Breast @ 9:31 pm

Nine years ago (when the shit was hitting the fan the first time around), telling my parents was one of the hardest things I ever had to do. I instantly felt a sense of shame overwhelm me, as if I had done something wrong. I knew even in the moment that it was ridiculous, but the feelings were real.

I also knew that I didn’t want them to deal with any of the questioning. You know – small town, people talk. I didn’t want them to hear, “Laurie is dying of cancer up in New York City.” I didn’t want there to be any question about what was happening to me and also I didn’t want them to have to tell my story.

Little did I know, that writing my story for them actually became therapy for me. It became a way for me to get out of my head, a way to re-enforce the fact that it wasn’t just happening to me. That there were many women before, during and that would sadly come after.

A few months ago, during an open discussion session on breast cancer I led once in which I talked through my diagnosis, treatment and recovery, I was asked, “Does talking about your cancer help give you the positive attitude you have?”

It’s not the first time I’ve been asked this. But maybe the answer is yes. Writing about, talking about it – it’s all therapy for me. Writing down the words, talking about the truth. Almost as if once I put the words out there, it’s confirmed that it’s happening. It’s confirmed that it’s so incredibly shitty, ridiculous, unfair.

Then there’s the dirty truth of it all. Each and every step, never quite what anyone warns you about.

So that’s why I write.

But I bike to actually stay in my head, for just a bit. To slowly stroll up and down the massive river called the Hudson. A river that just a couple of miles further opens up to the Atlantic Ocean. I know how fortunate I am. To end my round trip journey at a place that saved me from the same mind game trauma I’m about to be set upon yet again. I may only have three more treatments to go, but the next two months will be the most challenging ahead. The waiting…

PS – a loon was gliding over the water. Enjoying the sun’s raise and had no time for Peek-a-Boo.

 

Day 4 – #tbt April 24, 2020

Filed under: cancer — Bad Right Breast @ 7:44 am

What is radiation? I’ll write in detail later but for now, here’s a throwback to 8 years ago. 15/30 treatments in…

https://badrightbreast.wordpress.com/2012/03/28/halfway-thru-radiation/

 

DAY 3 – celebrate the Earth April 22, 2020

Filed under: cancer — Bad Right Breast @ 9:22 pm

Just another day of radiation. A windy bike ride, with two loons flying overhead that got lost in the clouds.

But today marks four years since our beloved Victor died of brain cancer. So instead of a new post, I send you back 4 years ago to remember a great man, and his mangoes.

https://badrightbreast.wordpress.com/2016/04/25/no-more-mangoes/

 

DAY TWO – Radiation Radio April 21, 2020

Filed under: cancer,radiation,stage 4 Metastatic — Bad Right Breast @ 8:26 pm

Let’s take a little turn. There’s enough doom and gloom in our lives, even on a good day. So in case you were wondering what I am listening to during my bike rides to and from the hospital… More specifically, what do you listen to when you’re a Murderino who’s listened to just about every true crime series? Here are my current choices:

DAILY in the AM – just in time for my 9am bike ride south, I start off with the 10k Daily. Since 3/16, Alison and Lulu (both isolating in Florida) have been publishing daily 10 minute podcasts, cracking me up every morning. Separate from their weekly Wednesday and Sunday casts (equally hysterical – I will never hear Crested Butte the same again), the daily gives you some insight to what you can do, watch, build and more during our shelter in place, while laughing at the same time. Subscribe to 10k Dollar Day.

11:30am or soon afterwards- Governor Cuomo ‘s Daily Briefing

DAILY in the PM – with her regular podcast, Family Secrets (equally as thrilling) on hiatus til August, Dani Shapiro has started a daily called The Way We Love Now. In each episode she interviews someone different – restaurant owner, a retired physician, actress Jamie Lee Curtis, a New Orleans musician, Senator Chris Murphy, a therapist and grief counselor – all describing the world they’re living in now. Eye Opener!

WEEKLY: Terrible, Thanks For Asking – in a normal week, it’s already crazily refreshing hearing tales of life that people have persevered. But now that everyone IN THE WORLD has joined the Terrible Club, what next? Today’s episode with her kids killed me.

GO BACK AND LISTEN to Phoebe Judge’s This is Love, and then to get your true crime fix that’s more refreshing than gory, Criminal.

AND IF YOU WANT TO LAUGH AT NOTHING: Do You Need a Ride? Two comedians who give comedians a ride to/from LAX airport for gigs, but what do they do now? When laughing at nothing is what you need, listen to this.

And today? Even tho my trip took place in the AM rather than the afternoon like yesterday, a loon was still around to greet me.

 

DAY 1 & DONE April 20, 2020

Filed under: cancer — Bad Right Breast @ 5:27 pm

It was as good as it could be given all of the circumstances. I have a lot to contemplate regarding the new medication, side effects, how I should adjust my diet and the best way to keep alcohol in my daily allowance.

Really, I’m just tired. A lot leads up to your first day. First day of school, first day on the job, first day in a new home. Today, like all other first days, I’m tired from mostly the adrenaline. I’ve come down only to know that I have to get back up.

In talking to a lot of friends, one mentioned that the first time around, with cancer, was like a marathon. I did it. I pushed through. I got to the end. And now? They’re making me run it all over again. It’s a great analogy for going through cancer another time around. But to be honest, I can’t see myself running a marathon. Better yet, I have no interest in running a marathon. So, I guess I’ll take it.

Just so you know, I witnessed at least 5 individuals in there 80’s at least, kicking ass out there, running and biking. I was barely keeping up. So yes I’m taking it easy, no I didn’t try to beat them (although I did two), and I didn’t have any road rage. – writing this all specifically in case my Oncologist reads this.

Glad to have Day 1 over and done. As I rode back home, I was followed by a couple of loons along the Hudson that reminded me of something we all need to keep repeating right now. We are not alone.