When I scheduled my COVID booster, I didn’t look at the calendar. I always check my calendar—this time, I did not. I checked with my oncologist to see if I could get the vaccine before a PET/CT. You can’t, by the way. So when I scheduled my COVID booster, I didn’t know it was the day before my Faslodex shots. I will never make that mistake again. I historically have a complete immune response that includes high fever, muscle pain, bone pain, chills, and headaches. To add insult to injury, I also had them give me the flu vaccine because why not feel the absolute worst I can possibly feel at one time.
I did try to change my vaccine appointment, but it would have pushed it out to the middle of October. I wasn’t comfortable with that. Onward. As expected, I had all the side effects. I also didn’t sleep because of them. I shivered and sweated while watching my new favorite show: Bones. How did I miss it when it was on? My fever reached 102.5, and I contemplated canceling my Faslodex appointment more than once. Hourly, in fact. When Tuesday morning arrived, I choked down some Tylenol with some very strong coffee and slowly got ready for my appointment.
An Unexpected Surprise
It turns out this wasn’t going to be a normal Faslodex appointment. It was also time to get my Xgeva shot. Xgeva helps keep my bones strong-ish. It’s a small subcutaneous injection but really packs a punch. I get it every three months. Let’s not forget the port draw I wasn’t expecting. Honestly, that is typically the least painful even without numbing cream. We did the Faslodex first. The alcohol they swab your behind with didn’t dry completely. I knew this as soon as they jabbed the needles into me because it burned something awful. The sensation went all the way down my legs. That always makes it feel like the shots last FOR-EVER.
The port draw was next. The nurse jammed the large thumbtack-like needle into my port. She fidgeted with it and told me to turn my head to the left (my port is on the right). She wasn’t getting a blood return. The nurse raised the foot on the reclining chair I was in and released the back, so I was lying down in this chair. Still no blood. The nurse explained she needed to use a medication called Alteplase which would break up the small clot preventing the blood from coming thru my port. I had to sit while the Alteplase did its thing. Thirty minutes later, the nurse could get blood return and draw my labs. Finally, she administered the Xgeva, and I was free to go.
Good news. There were no new metastasis seen and my new friend in my kidney is still too small to be seen. I’m thankful my oncologist agreed to the PET after my previous scans. It makes me nervous to think if she had gone with the June scans, and the inconsistencies, and decided to change my treatment how that would have gone. We agreed to scan again in March.
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It seems as though we are obsessed with slapping a label on things associated with illnesses. These labels, regardless of stage, can be isolating to some extent, even off-putting. Other people closely identify with them.
I will be the first person to tell you that cancer is difficult. One size does not fit all, and living through it can fundamentally change a person. While it makes perfect sense to want to celebrate being done with it all and putting it in the review mirror, is it essential to identify with a specific label that constantly reminds you of that experience? And what happens if cancer returns? Does “survivor” still resonate?
So, when did this start, and why has it changed over the years to incorporate a whole month and a specific day dedicated to survivors & survivorship?
To Be Or Not To Be
The term “cancer survivor” was introduced by a US physician Fitzhugh Mullan which appeared inNew England Journal of Medicine in 1985. He suggested that survivors included people from diagnosis to the end of life. Distinguishing them from others with a worse prognosis.
Margaret I Fitch, RN, Ph.D, Editor in Chief, Canadian Oncology Nursing Journal wrote an article entitled “Take Care When you use the word survivor in 2019. Fitch acknowledges that there are several ways in which to define the word survivor and that none are universally accepted.
“The word itself likely grew out of the declaration of ‘the war on cancer’, and is connected with a notion of ‘winning a battle’
Margaret Fitch, RN, PhD
Additionally, a small study was conducted in the UK focused on 20 young women (between 18 & 44 yrs of age) that were 1 – 10 yrs post diagnosis. The study acknowledges 23 previous studies that explored how individuals who have had cancer view the word survivor.
The conclusion of this particular study was not unlike the others in that
“…not all individuals living beyond cancer identify as survivors and that this language may indeed be alienating and harmful for the well‐being of many”
Let’s Try Something New
It’s clear the term survivor does not resonate with everyone who has had a lived experience with cancer. Even those who are no evidence of disease years after completing successful treatment. So, why is it still used? Why can’t we adopt something new that doesn’t alienate anyone while being truthful to everyoneâ€™s experiences?
I challenge everyone to stop using survivor and instead say: “lived with” or “living with” cancer. Cancer isn’t who we were or what we are. It’s something that, for whatever reason, happened. W are all doing the best we can to live through or with it.
How do you feel about the term survivor? Let me know in the comments.
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At the end of last year, I made the difficult decision to stop all active advocacy in the Metastatic Community. In February, I officially resigned as METUP’s President. I haven’t disappeared completely, I am still available for individuals that need advice or help. I feel I will be more effective that way.
I threw myself into advocacy because I felt it was the right thing to do. My intention was to try to make meaningful change for those that may come after I’m gone. I diversified my activities. If it felt right, I would say yes when asked to take part in something new. I’m not someone who craves attention or wants any recognition. I’ve always preferred to be in the background; part of the scenery if you will. That didn’t always happen. I allowed myself to be out of my comfort zone a few times in group projects and while I am thankful for those experiences, I promise you, I hated every minute of it.
I, unfortunately, allowed my mental health to suffer because of my advocacy. I didn’t want the deaths of the men and women I knew to be in vain. I felt an overwhelming responsibility to keep going while my physical health was reasonably good. Meanwhile, I felt like a fraud. Who’s going to take me seriously when I’m still here after 8 yrs? I certainly don’t look sick, hell I wouldn’t even believe I had cancer so how can expect strangers to? Add a healthy dose of survivor guilt and top it off with a global pandemic that cuts us all off from socialization. I was low. I was unhappy.
Advocacy has changed so much. There is less and less that feeling of: “how are WE going to fix this” and a whole lot more in-fighting, cattiness, and “you’re doing it wrong.” There are these pockets of small groups that want nothing to do with each other for the stupidest reasons. I can only imagine how it looks from the outside but from the inside, it feels like there is this constant unofficial fight to be the top dog of advocacy.
It all changed when Beth Caldwell died. She truly was the matriarch of the community. The sad thing is there is still so much more to be done: pharmaceutical price gouging, restructuring clinical trials, research disparity but the center of attention right now is the systematic discrediting of a fellow MBC patient. I can hear Beth’s voice asking: “Who’s life is that going to save?”
In the past, I have tried to help. I’ve taken it upon myself and tried to be a voice of reason. We are more powerful & effective when we all work together, aren’t we? The fire I once had in my belly was gone. It isn’t empowering to me anymore. I cannot be around people that have these other agendas that have nothing to do with advocacy while boasting how awesome they are. In my experience, if you have to keep repeating your perceived status, it’s not as awesome as you think and no more than what others have/are doing. Any respect you may have had is been decimated by your own words and actions.
I’ve given MBC advocacy all I had. I’m proud of all the things I have done and I don’t regret any of it. I made incredible friendships because of it. Now, it’s time for me to focus on my family and the people I love the most in this world. I am turning my attention to the future. More specifically my Granddaughter: Piper Olivia who will enter this world in January. I am not going to squander this amazing gift the universe has bestowed on our family.
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May was a BUSY month! So many amazing milestones were reached I’m still not sure if they all happened. Every day I look at all the pictures taken over the last month & I thank the universe for allowing me to be a small part of it all.
It all began with double graduations from the University of Rochester for my son & his fiancee. We weren’t sure what would happen thanks to Covid-19 until a few months prior. It wasn’t exactly ideal but what matters was I saw them both in their caps & gowns, heard their names called & what every parent dreams of; watching them both walk the stage to receive their degrees. Well, degree covers. There were five ceremonies in all spread out over three days. The big commencement & two-degree major ceremonies for each of them. All streamed live for parents and loved ones to see.
Immediately after the pomp and circumstances, we switched into wedding mode. They chose to get married in my daughter-in-law’s home state of Oregon. I don’t know how they planned the wedding while attending their last year of college AND working. All the while not even sure it would all happen due to all the restrictions and rules for the pandemic. If it weren’t for her parents, it would have been a nightmare for both of them. When it comes to inlaws, Adam won the lottery.
They had a beautiful day weather-wise. Their ceremony and reception took place outside. Making for an ideal setting. Clear blue skies and warm temperatures all day. Actually, it was damn hot.
If it had been a contest of who cried more, Adam won. Hands down. It filled my heart to see all the emotions he was experiencing. There was no doubt just how much in love he is. The bride was stunning. She glowed with happiness as her father walked her down the aisle.
After the ceremony, there was a lovely dinner, toasts to the bride and groom, something called The Shoe Game that involved all the wedding guests and llamas. Yes, llamas.
When I returned home, I was given the all-important task of babysitting their five cats and dog. That week I was literally a cat herder. No easy task I might add.
The newlywed’s honeymooned at Disney World in Orlando, Florida. They had a fun and relaxing time. I won’t lie, I was a lil bit jealous.
When I began this blog, my biggest goal was to see Adam graduate from high school. If someone had told me I’d be there for that and so much more milestones in his life I would have laughed and laughed. I never let myself hope for anything beyond the one goal I would set for myself. I was too afraid of hoping for things I’d never be part of. Cancer forces one to not look too far into the future no matter how optimistic. I don’t say this to put anyone off or to be a downer. I say it because of how grateful I am. I must acknowledge how incredibly lucky and appreciative I am.
Which brings me to share, with gratitude this last bit…
Just in case anyone doesn’t understand the photo above, these should do the trick!
I’m going to be a *gulp* GRANDMOTHER!!
Truth be told, I’ve known for a while. This has been the HARDEST secret to keep. Those that know me, understand how physically painful this was. I was SWORN to secrecy until other family members were told. Nothing is worse than finding out about important life events than on the internet. So, how long have I known, you ask?
I have a magical new goal!
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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.
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.
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’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.
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.
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When I first learned of my diagnosis, it was essential to my husband and me that we consider a cancer center that would offer cutting-edge research and clinical trials. We wanted to make sure that I would have every treatment option available. That’s why I am also a patient at Memorial Sloan Kettering. At my first meeting with my oncologist there, we discussed clinical trials. I had even asked if there was one I could get into immediately. That’s how important I felt they were. Now, I’m not as confident as I was then.
While I didn’t know a lot about cancer research, I knew that research would be my only hope to keep on living. I counted on whatever clinicians were currently working on would be FDA approved and for my specific pathology before I exhausted my options. In the beginning, doctors told me I might have 2-3 yrs with the current standard of treatment. I wanted longer – a lot longer. I wasn’t going to accept what was “my fate,” and I became a vocal advocate for metastatic research. I was disgusted with how little money was going to metastatic breast cancer research. Large non-profits known for bringing awareness to breast cancer were mainly focused on preventing and treating early-stage disease. That’s great, but where does that leave me and others like me? It left us forgotten and ignored. We were the misfit toys on the island far out at sea.
After all, we are dying, and research typically moves at a snail’s pace. Doctors were treating us and keeping us as comfortable as possible. Another organization bluntly stated that metastatic breast cancer is just too complicated for research to focus on. Prevention was the key to save future generations, and we should accept that because it was too late for us. Whelp, the joke is on them. Shortly after my diagnosis, in 2014/2015, the first CDK4/6 inhibitor was on the market. Ibrance was the game-changer for estrogen-driven breast cancer. Maybe research wasn’t as slow as I thought. Little did I know.
There Is A Process
Over the last eight years, I have had extensive education in all things MBC. If one wants to create change, one must learn all about what needs to be changed. What I learned was disturbing. Clinical trials are a complicated process. There are four main phases each new drug must go through before getting acceptance from the FDA. Here is the cliff notes version for those that aren’t familiar with them.
Phase 1 is for figuring out what dosage is enough without being toxic and whether or not the drug effectively treats cancer in humans.
Phase 2 takes that dosage Phase 1 resulted in and monitors the drug’s safety and possibly pair it with existing drugs.
Phase 3 tests against the current standard of care. Patients are usually randomized, so clinicians can assess patients by which group they are in.
Phase 4 tests drugs that the FDA approves. These people are monitored to get better data on side effects previously seen in earlier phases.
This entire process can take YEARS—five to ten years in some cases.
Before ANY of that can happen, clinicians need people to qualify for the trials. It’s not just a matter of identifying people with a particular kind of illness. If it were, every clinical trial would be full. Patients must meet a laundry list of qualifications & parameters set by drug companies. The number of inclusionary criteria can be (and usually are) in the double digits. There are also exclusionary criteria that can deem you as not acceptable. That list can be just as long or longer, including previous biologic (cytotoxic) chemotherapy, having brain mets, prior radiation, etc. Scans have to be done, forms have to be filled out, and patients must adhere to a washout period. Patients can not have any trace of treatment drugs in their system before starting a trial. However, this “period” can be as long as six weeks or, in some cases, even longer. Think about that for a moment. Do you know how fast metastatic cancer can progress in six weeks? When the cancer is already active, not being on any treatment can make it progress exponentially quicker. Some patients die during this washout period. Next time you hear there aren’t enough people for clinical trials, remember that washout period.
What I find unacceptable is when clinical trial parameters don’t/won’t make reasonable accommodations for patients who have common and real-world contraindications because “it’s how other locations are doing it.” Even something as simple as how the stability of disease is measured can add another layer of anxiety to a patient participating in a clinical trial. Imagine a patient whose PET scans have previously been monitored due to a common iodine allergy to CT dye unable to have contrast in scan required to monitor the patient in the study. The only way they will monitor if the trial drug is working is with a CT WITHOUT contrast. PET scans are not allowed because the other locations/countries involved don’t do PET scans. Having a scan without contrast is similar to being in a room with the lights off and trying to get around. Something is bound to be overlooked. Even things as simple as blood work for the trial can require the patient to travel to the trial’s location weekly, or in some cases even more, JUST to get a basic CBC Blood test that is common enough to be run at home. What could be a local trip now requires commuter patients to potentially drive hours or find a flight to have a basic lab draw. Sure it’s good and convenient for the trial, but it can be utterly prohibitive for the patients, even if it’s their last hope.
The High Cost of Trials
Not all trials are local to where patients live. They often require regular travel, extended stays in the city the clinical trial is in, which means money for food. The clinical trial doesn’t always cover all of these expenses, so there is a component of financial toxicity that can be very overwhelming on top of everything else. Hotels haven’t gotten cheaper during the pandemic. Many of the free or reduced lodging programs through major cancer centers have stopped during the pandemic making it nearly impossible to find free or deeply discounted lodging for the patient. You would think by now we would be in a place where people could participate in a trial from their home base and have doctors communicate with each other.
So, what if you’re in a trial that’s located at a different hospital? Who is responsible for your care above and beyond the clinical trial? If you develop a problem while you’re home, do you go to your doctor? I would assume it to be yes. I found that it’s not that simple. Clinical trials can complicate things. If you need a medication for a separate issue, will it kick you out of the clinical trial? Maybe.
In one situation, a patient currently in a clinical trial has all but been dropped by her local medical team. When she called her oncologist about a new infection that is not a side effect of the trial, her doctor told her to let the people overseeing the clinical trial know or go to urgent care. As far as they are concerned, she’s now under the care of the clinical trial 4 hrs away. The clinical trial folks instruct her to see her regular doctors. Palliative care has all but been stripped from her. Imagine having breathing issues with oxygen levels that don’t even reach in the ’90s, and NO ONE is monitoring you. She’s now in cancer limbo. You’d be OK with that. No, no, you would not.
Now when I hear there’s “not enough people for clinical trials,” I think, no shit. Why would anyone enroll? The burden on us patients is too high a cost -financially, physically, and emotionally. It outweighs the benefits. Becoming a human hot potato tossed back and forth between doctors while they cry “not it” is very unappealing.
It’s not a secret that the clinical trial process is broken. Those involved in advocacy have been trying to make changes with clinical trials – making them more inclusionary, basing the washout period on the most recent drug the patient has been on (they don’t require the same amount of time to leave the body). From my perspective, it’s not only broken; it’s fractured. In order to remedy this, drug companies must make clinical trials easier on the patients they need. After all – the goal is to help extend the lives of people, right? Maybe by allowing for basic accommodations, we can reiterate that the data points in studies all have faces, families, and stories that shouldn’t include extra barriers beyond their diagnosis to survive. The following MUST be part of the clinical trial protocol:
Provide a clear understanding of the financial toxicity in and outside the clinic to participate in the trial and were to apply for grants or assistance if the clinical trial doesn’t help pay these costs.
Make reasonable testing accommodations.
Regular communication between the patient’s medical team to ensure proper care is provided.
Have palliative care continue or be available to those that need it.
Assign a navigator that patients can address questions or concerns.
I still support funding research; howthefuckever, something has to give for the clinical trials themselves. We are people who are sick that want more time. We do not need to be spending the extra time we are gaining, falling into crippling debt, or pushing to have our humanity acknowledged.
We deserve better.
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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.
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.
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.
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.
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.
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.
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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.