In my last post, I mentioned my blood pressure was unusually high. Since that post, my breathing has become more labored, and my fatigue has been off the charts. My chest was also beginning to hurt. It’s like a cramping feeling with pressure. My heart was OK. Was something wrong with my lungs?
At my Pulmonary appointment, the NP suggested we walk around the office while she monitored my blood oxygen levels. On starting our second lap, the pain in my chest began to feel worse, and I had a hard time catching my breath. My oxygen level plummeted to 89%. I was on the cusp of reaching the point where they would suggest oxygen.
Instead, I was scheduled to have a CT Angio. I was not in any way anxious about this scan. There’s no way I had a blood clot in my lungs. As I left the radiology office, I half expected to see a notification that test results were ready to view – meaning nothing was wrong.
Lungs, Why Are You Betraying Me?
It wasn’t long after I got home that my phone rang. Still not concerned. It was my Pulmonologist. She called to tell me I had several small blood clots in the left lingular subsegmental pulmonary arteries. I had to start a blood thinner immediately.
Anatomy of Lungs
I was floored. This was not how I expected the day to go. Definitely not that call or those results. BUT – at least there was an actual reason for why I had all these symptoms.
Answers Lead To More Questions
Now all I can think about is, why? What caused this? Both of the medications I take for the cancer have a possible side effect of pleural effusions. Is it a fair assumption that this would happen after seven years on the same meds?
Could the cancer have woken up and become active again? OR is it as simple as I previously had a DVT when I was first diagnosed, and I’m at a higher risk? Regardless, I would like to know why or what caused this, but I may never know.
As for now, scans will be in March. Hoping to have a very UNeventful February.
Oxygen is going UP!
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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.
My angry port.
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.
Scan Results
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.
Dear Cancer, Kiss This!
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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 everyone’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.
Miss Minnie in charge of the gender reveal!
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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.
The Graduates
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.
Rehearsal Dinner
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.
Llamas Anyone?
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.
Epcot
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!
January 2022
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.
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.
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.
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