The Quiet Time

Most mornings, I am the first one awake. I like that. I have a routine that I follow. I go into the kitchen, turn on the Keurig, put hazelnut creamer in my coffee mug, and while the coffee is brewing, I prepare Bella’s breakfast. The first of her several small meals throughout the day. I grab my coffee, my meds, an “after breakfast” cookie for Bella, and head for the couch. While I check my phone to see what I missed overnight, Bella & her full belly snuggles up next to me & falls asleep.

Morning puggle snuggles

This quiet time is my favorite time of the day. The only sounds that I hear are the clock’s ticking on the dining room wall, the soft whooshing of the traffic below us & Bella snoring. It’s peaceful & relaxing. My Twitter feed is full of tweets about what’s going on in the world & updates from friends sprinkled in between them.

It’s ironic how the brain triggers the memory of events that happened in the past. Songs, smells, places, reading a book, or specific dates. It happens even when we don’t mean to or even want to, depending on the memory it triggers. That happened to me this morning. Not just one memory, but two.

These memories are both exceptional, each in its own way. They are separated by fifteen years. I can recall every last detail of each memory. When I think of them, it’s as if I am back in that moment again. I hear the sounds, what was happening around me, and who was there with me. I even experience the feeling as if it’s happening for the first time. I don’t always remember them in the order in which they occurred. However, one always triggers the other. It’s like being in a time machine but without the “Back to the Future” Delorean. Does this happen to everyone?

This morning it happened backward. My memory placed me back in one of the many waiting rooms at Memorial Sloan Kettering in Manhattan. I was waiting for the nurse to call me for the first of four scans I was having. I was sitting in an armless chair; the bright sun came through the windows on my left. Above me, in the corner of the room, the TV was on. Good Morning America was on. A couple won a contest to be married, live on their show. The hook was that John Legend would also be there to serenade them with his wildly popular love song: “All of Me.” Later that afternoon, I would be in the exam room sitting next to my Oncologist and, on the other, my husband. She read the results of my PET scan. It was the first one I had after I started treatment and the first time I heard: No Evidence of Disease. I was confused. My doctor put her hand on mine, looked me dead in the eyes, and said, “The cancer is not detectable. The Aromatase Inhibitor is working. This is the best possible news.” It took a minute to sink in. I cried & laughed at the same time. That was seven years ago.

GMA 2014, Courtesy of ABC News

I will always be grateful for that memory. It’s probably the only positive, happy experience I’ve had living with cancer. I had hope again. Hope that cancer had taken from me. That feeling is what triggers my next significant memory. It was a snowy day in 1999. I had the ultrasound that every expectant parent looks forward to. I saw my son, for the first time, cramped in my belly. He looked so chill. The tech pointed out his tiny little finger buds, his spine, his legs. She was reassuring that all was well. Did I want her to tell me the sex? she asked me, YES, I wanted to know. She moved the wand back and forth over my stomach. “There it is,” she said. “You’re having a boy” The rest of the story can be read Here

As I sit here remembering these two events, I think about what’s to come this month. My son & future daughter-in-law are graduating from college. They will have commencement ceremonies this year. While the No Visitor policy is still in place, I’ll be watching the live feeds. The following week I will have fully realize a dream I never imagined I would have the honor to attend; my son’s wedding. I am so looking forward to watching his bride walk down the aisle to exchange their vows.

I adore these two

I’m still trying to wrap my brain around all of this. When did he grow up? Most parents who get to this point in their children’s lives want to turn back time to when their kids were little. I honestly don’t. I cherish this time right now as he builds his life with his soon-to-be wife. They both have accomplished a lot in the last four years. I couldn’t have imagined a better future for my little pup.

My lil pup

At the last minute, I chose to have my PET scan last Friday. I wasn’t going to do any significant medical stuff this month as I didn’t want anything to put a cloud over these monuments occasions, but in the end, I knowledge is power. I didn’t post anything about it or the “look at me; I’m having a scan” picture on social media. Many of my friends are dealing with their health that it just didn’t feel right. I realize it shouldn’t stop me from talking about what’s happening with my own health. It’s separate, but I guess I’m becoming more empathetic now that I’m in my 50’s. Is this what happened to the Grinch?

May 2021 will be the most fantastic month. I am going to take in every second & enjoy it to the fullest. I feel so, so fortunate, and I thank the universe for keeping me No Evidence of Disease for now.

It’s 2020 and the Whole World is on House Arrest

Like so many, I had high hopes for 2020. Super high hopes actually and not just because of the obvious this upcoming November. Hubs and I have birthday’s six months apart with mine being the first. A fact he is quite happy to remind me of every . chance . he . gets. There were plans in the works for an epic vacation. But I’ll come back to this in a bit.

Last month, was my PET/CT. It was scheduled at Sloan Kettering. The days leading up to when we had to leave, I kept in contact with the hospital. It was still early on but NYC had already been given ‘stay at home’ orders. Restaurants and non-essential businesses were closed. There was some chatter about closing the city completely. That never happened of course so we were good to go. I’m not going to lie, the drive to the city was a little creepy. Any other time it would be an absolute miracle as the usual traffic and back-ups on the bridges was nonexistent. The hotel was a ghost town. I am pretty sure we were the only guests staying on the property. There was no going out to dinner or walking around the city. It was TV and room service. The streets were noticeably absent of the normal crowds of people as we drove to Sloan the next day. I had the scan and we drove home.

 

I am very happy to report that I am good for another 6 months as my results were stable – again.

Soon after, we all started hearing phrases like ‘social distancing,’ and ‘flatten the curve’ and we were all told to stay home.  We were quarantined at home for 14 days because we had been in NYC. Neither of us had symptoms or were sick at all but we stayed inside in case we were asymptomatic. I have only gone out into the world one other time – for treatment. Otherwise, I have been home, watching the news, looking outside, keeping in touch with friends and family online or by phone. As much as I like to be home and I do like to be home; I want to runway like a prisoner planning a prison break and never come back. Seriously, as soon as the world opens up again and I can go where I want, I may disappear forever. There is something about being told you have to stay put that all of a sudden makes you want to do ANYTHING but that. Even my pup Bella is completely fed up. She’s beginning to look at me funny; almost like she’s plotting something sinister for some night when I am sleeping.

It feels like we are all living in a real-life version of the movie thriller Pandemic. Except it’s a lot less exciting and a whole lot more annoying. It makes me long for 2019 a little bit.

Back to the trip that never was. This year we both turn the big 5-0 and we’ve been planning on taking an epic trip for the last year. A destination that has been on both of our bucket lists – Rome. (Yes, I know) So, OF COURSE, days, before we were going to book the trip the entire country of Italy, became locked down. (Thank you novel virus)

I am making a prediction that we will still be on lockdown by the time my birthday rolls around next month. That completely bums me out. I hope I’m not right. I don’t normally make a big deal about birthdays but I admit that I was looking forward to being quite annoying about it. Balloons, streamers, a big over the top cake. I was going to cash in on all the years I was all – ‘Meh’ about it. I am trying to focus on the bright side of turning 50 during a pandemic – I have additional time to plan an even BIGGER epic extravaganza!

On a related note, I am now a proud member of AARP! Yup, that’s right, I said it. I used to get annoyed when an unsolicited email would find it’s way into my inbox, however the other day, I went to their site (on my own) and became a card-carrying member. I have to admit that it’s not at all what I imagined it was going to be. I won’t officially be able to take part in their benefits until my actual birthday but I already have my eye on a few things I plan on taking advantage of. I am gifting myself Vision Insurance for my birthday! SO EXCITED. It’s the little things, isn’t it?

Aside from becoming a missing person once the world opens back up, the very first thing I plan on doing is going to the salon. I may be turning 50 but I sure as hell will NOT be keeping these gray hairs and LOOK older than I am. Also, I have been making a complete disaster out of my bangs. Every pair of scissors should be hidden from me until this whole thing is over. I am not even kidding.

Wash your hands, Stay inside and above all Stay healthy.

 

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The Good News and Everything Else

The last few months have been busy. Lots of traveling in-between medical appointments and tests.

All the gallbladder testing and imaging did not turn out as expected, which in this case, is good news. There are no plans to remove it. It appears to be working just fine. Unfortunately, not much else has changed, so my GI doc (Dr. D) has put plan B into place. I’ll get into that in a bit.

Last month, I spent a few days in N. Carolina to take part in an advocacy project for METAvivor called The Serenity Project. It has two parts – an interview and an artistic part. The ‘artistic’ involved being in and underwater which was challenging. I sure no one wanted me to drown, but there were some times I was wondering….I’m JOKING. The entire project includes 10 Metastatic patients in all and will be debuted in December at the largest breast cancer conferences of the year, The San Antonio Breast Cancer Symposium (SABCS).

In addition to the “work” of the project, there were some fun things that had been planned, like yoga on horseback – yes, I did yoga on a horse. I also learned how to groom a horse too! Having never been on a horse before or even around them, I was excited to do this. Of course, the horse I ended up with was ‘hangry’ and wanted to do nothing but graze. She finally calmed down after she ate a bit of grass.

Shortly after coming home, I was back on the road to NYC. It was time for my 6 month PET/CT scan and check-up with my Oncologist. More good news, scan still showed no new evidence of disease.

Once my appointment wrapped up, hubs and I were back on the road to take a much-needed break in Florida. There is nothing better than morning walks on the beach, feeling the sand in your toes and finding shells along the way. If there is something better, I don’t want to know about it.

Now, for the ‘other’ or that Plan B I mentioned earlier.

The main issues are that I can’t stop losing weight and I have significant pain every time I eat. I must have another ultrasound of my abdomen and an upper GI with barium (yum). Dr. D also put me back on Omeprazole to make sure it’s not GERD, something my Oncologist at Sloan brought up mainly because I’ve had that issue before.

If all of that is negative, exploratory surgery is next. In anticipation of that happening, I have a consultation with a surgeon. If it were up to me, I would skip the tests, jump right to surgery and get to the bottom of this crap.

Then he hit me with this….sigh…I have about 10lbs wiggle room but that’s about it. If I continue to lose weight and get to or below that 10lbs, we will have to have conversations about a feeding tube or a PICC line for nutrition. (Link included to explain what all that is). That’s a hard pass. Nope. No thanks.

So that’s what’s happening and where things stand.

As for where my travels are taking me next, I’ll just leave this here…..

It’s All Very Bittersweet

It’s been six days since I traveled to New York to have my most recent PET/CT to see if the treatment I’m on is still working.

Six Days.

Six days are an incredibly long time to wait to get results for any scan but especially a PET scan. Waiting for the results of any scan that will tell you if the cancer is active and taking up residence in new parts of your body is just as  anxiety inducing, if not worse, as the time leading up to and the day of the actual scan.

I called Sloan last Friday to see if the report came back but was told that my Oncologist didn’t have it yet and that she would call me as soon as she had it. Great. I had to wait over the weekend.

I couldn’t help but think of my friends who are dealing with progression and treatment changes right now, like Susanne and April.

We all know that this is all part of it but when it does happen it still hits us like a punch in the gut. Each time we know one of us is going for a scan I think we all hold our collective breath  until we hear the news trickle through the interwebs and our circle of friends. It’s like we are all going through it together. We all feel that gut punch when there is shitty news and we all celebrate and throw fist bumps in air when good news is shared.

Then my thoughts go to the friends that are no longer here.

This year has been full of loss. Big loss. For me, it’s a messy combination of sadness, grief, anger and a whole lot of guilt. It may not make sense to some but I do feel guilty for still being somewhat OK. Survivor’s guilt they call it. Believe me, it’s real and it’s no joke. There are day’s that I would trade places Beth or Alexis or Mandi or Jennifer in a heartbeat.

But for now, according to my doctor, I will keep on the current treatment plan I’ve been on for the last (almost) 2 yrs. It appears to be working. Despite the pain in my back. Despite a rising tumor marker. There are no new metastasis that were picked up by last week’s scan.

I made my doctor tell me again. I didn’t believe her.

Then she handed me the report.

“NO SUSPICIOUS MALIGNANCIES”

My shocked, I’m oh, so happy….but it’s very bittersweet.

 

~Happy Thanksgiving Everyone~

I Did A Little Math – The Eve Of My 12th PET Scan

Tomorrow morning I head to Memorial Sloan Kettering for my 12th PET/CT Scan.

Twelve. That number seems low to me.

I actually went thru my online charts and counted all my scans since I was diagnosed. I’ll be having my 12th PET/CT in 4 yrs. While it didn’t actually work out like this over the last 4 yrs, it averages out to be a scan every 3 months. (Thank God for easy elementary school math!). However, if I were to include all the MRI’s, CT’s and other tests, I shudder to think what the average would look like then.

Recently, I met with a filmmaker that’s working with the Compassion & Choices NY Aid in Dying Campaign. The opportunity also afforded me to see the lovely Amanda Cavanaugh, Outreach Coordinator for C & C. We spent some time in a few locations around Rochester. During the filming I shared why I’m in support of Aid in Dying Laws in New York State and why this is issue should be a bipartisan, non-religious, HUMAN issue between the patient and his/her doctor.  One of the locations happened to be The University of Rochester, where my Son is a freshman this year. It was very surreal. I couldn’t help but acknowledging how ironic it all was. Here I was talking about Aid in Dying at the University my son attends shortly before I find out if my treatment has failed. How’s that for tempting fate???

The anxiety hasn’t kicked in yet. But it will. It always does. Eventually.

Everyone has a different way of dealing with an upcoming scan. There is no right or wrong way to handle the anxiety and PTSD that comes with scans like these. Coping mechanisms may even change over time. What worked for us in the beginning may not always work for us every time.

Here’s mine….because I’m a realist.

I always set myself up to expect bad news. I do this because I never want to be caught off guard by bad news ever again. I will never forget how it felt to hear my doctor tell me I had cancer as that conversation came out of left field. It sucked all the air out of me and I never want that feeling again. I would rather be completely relieved by good news than be kicked in the gut by a bad report.  I also don’t ever want to be cocky enough to assume that I won’t get bad news; because sooner or later I will. It’s inevitable. This time I even prepared Adam.  I would like to come home and tell him that I dodged another bullet, but until I hear those words myself, I’ll be mentally preparing myself for the “I’m sorry’ look in my Oncologist eyes or that tone in her voice if I get “THE” call as she gives me the news.

I’ll have my answers soon enough.