Memorial Sloan Kettering

Fifty Years of Gratitude

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Today I am grateful. I’m grateful every day, really, but today I am especially thankful. The people responsible for my gratitude should be acknowledged and adequately thanked, so I dedicate this blog to all of them.

The Early Years

I am grateful for my parents and that romantic night they had (I’m taking some creative liberties here, but you get where I was going) that resulted in me.

I was fortunate to have had a privileged childhood because my father worked his ass off, and my mom ran the house and raised my brother and me. We were monsters.

I am grateful to have had a close relationship with my mother’s parents growing up. I learned an innumerable cornucopia of life lessons that could have only come from them.

I’m grateful I was raised with all of the traditions of my Italian heritage of cooking, holidays, always using my hands when speaking, and swearing.

I’m fortunate to have an older brother. No, I am.
Even though he teased me relentlessly when we were growing up, we did have some fun times, and he’s there when it matters. He and my sister-in-law have given me two nephews I am super proud of.

Nephews – The Early Years

I’m grateful to my dad for bringing a puppy home to us kids knowing full well he was the one that was going to need a dog house. While my mom was none too happy for a long time, Pepper survived four homes, two states, and getting hit by a car. 13 long years in all.

I am grateful to all of the friends I had growing up. I couldn’t tell you where most of them are or what they’re doing, but each one played a part, even a small part in shaping who I am now. I also have some cool memories. I don’t know how I didn’t get arrested with some of them.

I’m grateful for having had piano lessons as a kid. On my ninth birthday, my folks bought me a piano. Remember, I said I had a privileged childhood? I took lessons on and off through high school. I can’t play much now. Sorry, mom & dad, that was an expensive piece of furniture to display framed photos.

I was fortunate to have been afforded the opportunity of a good education. My parents chose private schools for most of our education. They weren’t uppity boarding school private schools (no offense to boarding school alum). I’m talking about Catholic school. Yes, the rumors are true, BUT that doesn’t include me. I was a nerd.

I’m grateful for my parents teaching me that life isn’t a series of handouts. If you want something, you work for it. There were chores to do, then babysitting until I was old enough to get a” real” job. A MALL JOB. Every sixteen-year-olds dream job. Mine was to work at Baskin and Robin; sadly, I ended up at Macy’s.

I didn’t know it at the time, and I sure didn’t feel it; however, I am grateful now that my family and I moved across the country when I was 17. California to NY. It was devastating then, but it had a massive impact on pulling me out of my shell and shaping the course of my life.

 

Adulting

There are no words for the gratitude I have for whatever power or force is responsible for trusting me with the outspoken and stubborn child I have. I mean that in the most loving way, only a mother could. Raising a child on your own is challenging. When that child is (at times) smarter than you (and knows it), make sure you have wine available. The moment I knew I was doing a rockstar job as a mom was when my son shouted those three little words and went stomping into his room,” I hate you!” I Love you too, kiddo.

I am grateful for all of the amazingly fantastic teachers my son had throughout the years. Most memorable to me are Mrs. Moore in PreK, Sr Pat in 3rd Grade, and Mrs. Feller, who taught him four years of Latin. I know there are so many more. I don’t mean to leave anyone out. These three are the teachers I immediately recall; however, I do mean all of you. Except one. Who shall be known as Voldemort. Don’t ask, please. I’m serious.

I am so fortunate to know some outstanding individuals who I keep within my inner circle. I met Jennifer as a senior in my” new” high school in NY. She was spunky, sarcastic, witty, and smart AF. She still is, but imagine all of those qualities the way fine wine will age to perfection, and that’s Jennifer now. One little reason why I adore her so goes back to that August in 2013. The night before my first ever PET scan, I received a call that the machine was down. I had to be rescheduled; they don’t know when. Jennifer wasn’t having any of that. She pulled all the strings she had, made calls, and went straight to the top. The top of what, I have no idea, but it worked. I was the first person in that machine the next morning. I adore Jennifer.

Duran Duran Fans 4 Life

I’m grateful for my pup, Bella. She’s a source of comfort, she’s my snuggle buddy, my secret keeper, snack taster, walking partner, and little spoon to my big spoon every night.

 

I am grateful for my extended family, my in-laws. They are supportive. They call to check on us, are always available at the drop of a hat, and generous to a fault. My step-sons are a trip. They put on a tough exterior, so you don’t see how much they care. Most recently, the youngest wouldn’t book a trip he was looking forward to taking until my scan results came back. He would only go if the news were good. It was, and he went. I LOVE my sister-in-law. She’s my comic relief; every family function is even better.

BREAKING NEWS!!

I am grateful for my FUTURE DAUGHTER IN LAW! That’s right. My son asked, and she said yes!! I am so happy for both of them. She has a generous heart, and she’s hard-working. She loves Adam and makes him happy. I can’t ask for more than that. Bring on 2021!

 

The Hard Stuff

I am grateful beyond words for my Primary Care Physician. Without her keen attention to the results of my tests; the clues she found could have otherwise been overlooked, I certainly would be dead and wouldn’t be writing this blog. While this may seem contradictory considering my current diagnosis, Dr. P saved my life in 2013.

I am grateful to have access to excellent medical care, especially at Memorial Sloan Kettering Cancer Center in NYC. My oncologist there, Dr. Modi, is the best. She listens, she’s calming, she’s honest but not scary. I love seeing her. I shouldn’t because – cancer, but I do.

It’s not always roses and rainbows even in the best of marriages. Throw in a serious illness and you’ve just upped the stress factor by about 100 levels. Anyone who says otherwise is a damn liar. Most of our marriage has been in the shadow of cancer. It’s been trying at times but my hubs has always made sure even after that final diagnosis that the best medical care was available to me. He never complained, in fact, he insisted we travel to Manhatten so I could become a patient at Sloan Kettering. He still found time for us to get away when we could (still does) and he always tried to make me laugh even when I REALLY don’t want to. His sister asks me all the time how I ‘put up with him’ but really he puts up with me most of the time. I am grateful for him every day.

I am thankful for my friends that stayed. The friends that didn’t leave or ghost me after cancer became part of the dialogue. There’s a huge adjustment that happens when you are dealing with a serious illness. An even bigger one when that illness isn’t ever going to go away. No one realizes that until it happens to them or it’s happening around you. Just like marriage or babies- there aren’t “how-to” step by step manuals. “What to Expect When You’re Expecting” does NOT count. That’s crap too. It glosses. I digress. I’m trying to say that I wasn’t the easiest person to be around that first year. Thank you for sticking it out.

36 years of Friendship

I am grateful for the radiation oncologist that treated my bone metastasis. Instead of putting me through a month’s worth of treatments, the plan was five days for each spot after careful mapping and tattoo placement.

I am tremendously grateful to the first oncologist I had locally (I’m on my third one, not by choice) that not only listened to me but also HEARD me when I kept pushing for breast surgery to remove the tumor that was still present. I was not a candidate because I’m Stage 4. Ultimately I met with an angel of a surgeon who understood my logic and worked out a compromise. I had the surgery and am very thankful to Dr. O.

I’m thankful for my Gastroenterologist. Even though every single test came back negative and had no explanation for why I felt so shitty or why I kept losing weight, he referred me to a surgeon who removed my gallbladder. While it appeared normal on all the tests, it was acutely inflamed. That was the problem all along.

I am so grateful to have met and gotten to know so many extraordinary and remarkable people from all over the country and the world. Please understand, I am not now nor will ever be thankful for cancer. I’d give that shit back in a hot minute. I consider the men and women I have met along the way being gifts for the shit hand life forced onto me. They have all changed my life for the better. Far too many to mention by name.

All of the advocacy opportunities have been unlike anything else. It makes me feel like I am doing something to make all of this not so shitty for the next person. Going to conferences, taking part in protests, lobbying, and even organizing a social media blitz – it all makes me feel productive. I am so grateful for that.

 

This is the longest blog ever. Hopefully, you’ve made it this far and not fallen asleep. I’m just about done.

I am the most grateful and overwhelmed that I am celebrating my 50th birthday tomorrow, even though it’s during this pandemic and most things are still closed. My birthday falls on a Thursday this year. I bring up the day of the week because I was born on a Thursday, and I think that my 50th falling on the same day of the week as I was born is pretty neat. I used to have a mug that had the “Mondays Child” Nursery Rhyme on it. I loved that mug. It was then I learned that I was a Thursday’s child, and I had far to go. It’s not so corny anymore.

It’s a little bit poetic when you think about it; I should be dead. I should have died in 2016 according to the statistics. That’s IF you believe statistics. I’m not special. I’m not doing anything different than anyone else has done. It’s 75% luck. The other 25% is because of the treatment plan I’m on that has been working for the last 5 yrs. I wouldn’t be taking these medications if it hadn’t been for the researchers working to find the CDK/4 Inhibitor who then ran the clinical trials that resulted in Ibrance. That 25% is saving my life right now. It shouldn’t be. It should have stopped working, but it’s still saving my life.

Remember gratitude; always be grateful.

I’m leaving this song from Sia “Saved My Life” that inspired this blog below. Sia is and always will be my music God.

 

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

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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 Couch That Love Built

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If you’re a regular reader here, you know I’ve talked about The Cancer Couch, and it’s founder, Rebecca Timlin-Scalara. In case a refresher is needed, Rebecca started a nonprofit as she was recovering from treatments she was receiving for breast cancer. The irony in her choosing the name of her foundation comes from the fact that she, a neuropsychologist, literally went from one side of the couch to the other.

Rebecca initially was told she had Stage 4, metastatic breast cancer, but after having additional scans, it was determined she was Stage 3C. When her doctor told her she had a chance at a cure (being 3C), she decided then and there she had to do something about the fact that MBC is woefully underfunded. She wasn’t going to leave those of us dying behind.

Rebecca and I met and began working together in the summer of 2016. We had a “small world” family connection that Italian families are known for. It wouldn’t surprise me if our “ancestries DNA” held similar leaves on some of the same branches of our family trees too but I digress.

Rebecca could hustle. She formed relationships with just about everyone she met and if there was a way to partner up to raise money for her foundation, which meant MBC research – she made it happen. Fun Fact: There are only two organizations that are focused 100% on MBC research; however, every single donation gets matched, which makes volunteer-run TCCF unique. That’s right – MATCHED – Dollar for Dollar.

Cancer is a sonofabitch. It doesn’t care who you are; it doesn’t discriminate. A sobering statistic I have mentioned here before is that up to 30% of those successfully treated for breast cancer will recur with metastatic disease. It may not happen immediately; it could be up to 15-20 yrs later. When Rebecca found out hers had spread, it didn’t slow her down. As I write this TCCF has funded over 3 Million Dollars for MBC Research.

This incredible woman, this champion for metastatic breast cancer patients, my friend, died on Saturday, December 14th. Please keep Rebecca’s family and friends; especially her husband and children during this unimaginable time.

Below is Rebecca’s obituary, as written by her husband, Tom. As much as I hate that it had to be written, it’s the most magnificent tribute that encompasses the essence of who she was.

Dr. Rebecca M. Timlin Scalera
August 20, 1972 – December 14, 2019

The Radiant:

A Radiant Mother, Wife, Daughter, Sister, Aunt, Friend, Neuropsychologist, Breast Cancer Activist, Division 1 Athlete, Coach, Captain, Comedienne, Traveler and Writer. A True Force of Nature and A Whole-Hearted Lover of Everybody and Everything in this Life.

The Angels:

A beautiful blue-eyed angel was made on December 14, 2019. Dr. Rebecca (Reb) Timlin Scalera was the wife of the incredibly lucky (she wanted me to write that), Tom Scalera, and the loving mother of her amazing children on this earth, Bella and Luca, that are a daily reflection of their Mom’s radiant energy, beauty, and intense love for them. We are all comforted to know that she will now be with our heavenly son, Angel.

The Magical Days:

Reb was born August 20, 1972 and grew up in Windsor Connecticut. But there was even more family magic on that date…33 Years later she birthed her beautiful cosmic twin, Bella, on the very same day and (wait for it)…the same minute. It is a day of miracles in our family and it shows how uniquely and freakishly strong Reb’s connections have always been and will always be to her children. She also continues to have a life-long connection to her special childhood friends from Windsor that have been faithful traveling companions through every stage of life with her.

The Smarty Pants:

Reb was insanely intelligent, that rare combination of IQ and EQ – yes she had it all and she had the lighting-quick processing speed to use it. So not only did Miss Smarty pants get a B.A. in Psychology from Fairfield University, she went on to Fordham University to get her Ph.D. in Counseling Psychology and then added on a Professional Diploma in School Psychology from Fordham University for good measure. She made neuropsychology her career choice and ultimately became a partner at Neuropsychology Consultants in Norwalk, CT because her spirit could not bear to see anyone in pain (store that one for later). Reb was born inside out, her soul was on the outside, you could immediately feel it when you were in her presence. A brutal 4 year war with Breast Cancer ravaged her body, but her Mind and Soul just grew stronger and more magnificent every day. She lived a daily life of passionate enjoyment – to Reb everything was amazing. And while she did not have very much time on this earth in this form, she enjoyed it twice as long and twice as hard as anyone I know.

The FU:

Going back to our beginning, it was at a Fairfield University beach party (just 10 houses away from the dream home we just built), that we first met and fell in love. She said she was hit by a lightning bolt and immediately knew we were soul-mates (remember soul on the outside). Some of her other amazing memories and accomplishments from the Fairfield University days included being named All Scholar Athlete on the Women’s Division 1 Soccer Team, experiencing a life changing semester abroad in Spain, engaging in a decent amount of partying and forging life-long friendships and connections within the amazing Fairfield University Community.

The Couch:

So after a dream vacation in August 2015, Reb was diagnosed with Breast Cancer and the long battle officially started. She, like so many others, thought that all breast cancer is curable, but she quickly learned that it is not. It is not! So she directed her energy, passion and intellect to increase funding for cutting edge research for Metastatic Breast Cancer – the one that ultimately takes 42,000 lives a year in the US alone. So the former psychologist started the 100% volunteer managed Cancer Couch Foundation from her own recovery couch. In just 4 short years, the Cancer Couch has funded over $3 million in research at Dana Farber and Memorial Sloan Kettering. She proudly represented the Foundation on ESPN, the NBC Today Show and countless other news and radio broadcasts. The Foundation also hosted 4 of the best party fundraisers in Fairfield County – Reb made sure that everyone had a crazy blast while combating this deadly disease – that’s how she rolled. While there is much more work still to be done, we are so very thankful to the thousands of supporters of the Couch’s mission all around the world.

The Reb:

Rebecca constantly amazed the many, many people who loved her with her boundless energy, optimism, smarts, and thoughtfulness. She made devoted friends in every stage of life, and kept them, always one to reach out and bring people together with great warmth, humor and enthusiasm. She had many interests and talents that she pursued passionately, often inspiring those around her to pursue them as well. Among her many loves were the sea (she was the Lady S Captain, not me), the beach, traveling, writing, blogging, raising millions, live music, reading, tons of movie popcorn, watching shows and snuggling. She was notoriously the last one to the party and the last one to leave – she never wanted to fun to stop. As exciting and accomplished as she was, there was no one better in the world to do absolutely nothing with.

The Family:

Reb is survived by the incredible Tom and Rosalie Timlin, her three indomitable siblings: Vivian Ciampi, Sean Timlin, Paula Cunningham; her 4 super-cool siblings-in-law: Marc Ciampi, Jim Cunningham and Nicholas Vasquez Scalera and Carolyn Vasquez Scalera. She will remain a constant presence in the lives of her 8 adorable nieces and nephews: Zachary, Carina and Colby Ciampi; James, Makayla, Thomas and Kendall Cunningham; Briana Timlin and Amelie Scalera. The Family would like to thank the countless, nurses, doctors and support staff that lovingly cared for her and often received a personalized rap song as a gift of her appreciation (yes that really happened often). And we’d like to extend a very special thank you to Dr. Andy Seidman, Reb’s Rock-star oncologist and trusted friend and her dream team of researchers at Sloan led by Dr. Sarat Chandarlapaty and at Dana by Dr. Nikhil Wagle. The Family would also like to thank the extensive and highly capable network of family and friends for the countless acts of kindness and love shown to us all in so many ways.

Those wishing to make a donation in her memory to her foundation can click HERE.

Rebecca established an Angel Fund at The Pluta Cancer Center in Rochester, NY (where I go locally) for metastatic breast cancer patients in financial need. Those who would like to make a donation in Rebecca’s memory to that fund can click the link above and scroll to the bottom of the page until you see my photo.

The Good News and Everything Else

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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…..

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

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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.

 

The Numbers Game

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This past Valentine’s Day I spent the entire day at Memorial Sloan Kettering in NYC (my home away from home) and had a battery of tests, scans and doctor appointments. It was my 6 month cancerversary and it was time to see if the hormone therapy I was on was working. My Doctor was pretty sure it was since my labs were looking good and the tumor marker numbers had been consistently been going down. To say it was a high stress day was putting it mildly. I wouldn’t know the results of all the tests and scans until the end of the day and I wanted to know now.

First I had a Mammogram and ultrasound to see if the tumors in my breasts had changed. I was not impressed with my tech. She had zero bedside manner. I understand she sees a lot of women but is it too much to ask that she at least be NICE?? My PET/CT scan was next. I couldn’t help but have flash backs to my first PET. Knowing you have cancer but unsure what kind of where it was coming from was the worst. Those feelings of terror and helplessness came flooding back. I tried to stay positive and concentrate on the fact that my numbers were good. This had to be a good sign.

After the PET/CT we had a break and my husband and I had lunch at the restaurant on the corner. We kept our conversation light and positive knowing that in a few hours we would be meeting with my Oncologist.

Blood work was next and then we were in the room waiting for Dr. Modi. When she finally came in I wanted to jump out of my skin. Part of me didn’t want to know but she had the paperwork in her hand and she began telling us although the final report wasn’t back she had a partial read:  No Evidence of Disease. I immediately broke down in tears. I couldn’t believe the meds worked. My doctor was very pleased and we talked about how the hormone therapy would be what I would stay on for now. My husband was so happy. He told me he wasn’t surprised I had good news but I could see the relief in his face.

After my emotions calmed down the questions began: How long will this medicine work? What happens when it stops working? Will chemo be next? As happy as I was I still felt as though I had a cloud over my head. After all, at some point the cancer will figure out how to get around the meds and will start invading my bones again or worse. It’s like telling someone getting a cast off their leg that they can run and jump again but sooner or later their leg will break again. It’s a strange limbo to be in. My Oncologist explained that they would monitor me by the blood work. If at any point the blood work changed they would move on to scans. So now, it’s all about the numbers.

In April, I began experiencing severe pain in my ribs and chest. I spent 5 days in the Wilmont Cancer Center where they ran test after test to figure out where the pain was coming from. I was on massive doses of dilauded that I pumped every 30 minutes. Their first thought was that I had new metastases but all the tests were normal. I was referred to Palliative care for pain management.

I have my blood drawn every month where I live so my doctors can monitor my numbers and also when I’m in NYC. In May one of the tests came back higher than the previous months. It threw me for a loop. Did my meds stop working already?  Was the cancer coming back? Although I wasn’t out of range yet I was a the tippy top of it. Any higher and I’m outside the normal range.  I’d have to wait another month to know for sure. When I told my Oncologist about the blood work at my next appointment she had me schedule a PET scan for July. Great.

Much to my dismay the pain I had in April returned and it hasn’t gone away. I’m on a different pain med but no matter what I take it’s still there. Monday I go for my monthly blood work. I’m very anxious about it because I’m sure of what the results will show. It’s a gut feeling I wish wasn’t there. Along with the constant pain that fluctuates between manageable and wanting to hurt someone most of the side effects of the hormone drug I’m on are gone. This is another reason I’m sure there is a problem. At least when I had the side effects I knew the meds were working. Now I’m not so sure anymore.

My hope right now is that the numbers aren’t as high as I fear they will be. And when I get back from our family vacation I’ll have the PET scan and find what I’m facing. Until then I’m going to do my best to stay positive, enjoy our upcoming vacation and make as many memories as I can with my family.