Monday I start a 10-day regimen of radiation. This will be the 5th time I undergo radiation treatment for metastatic breast cancer (MBC)
In April I shared I was not sure how to “celebrate” being NEAD, or No Evidence of Active Disease. Especially after living with MBC for eleven-plus years. Not to mention the passing of two family members within months, even days (January and April) to other forms of cancer.
I never did “celebrate” the NEAD news.
It didn’t feel appropriate. Honestly, it didn’t even feel real. Living with MBC means you are just waiting for the next scan results.
For me, during these past 12 years (yes, I hit the 12-year mark in October), I have accepted “Stable” as “good news”. However “good news” is not what others might think. “Good news” for me means there is no progression -at the time of the scan – and there is no need to change medication.
The results from my November scans were not “good news”
…but the results were not “bad news” either. It is inevitable there will be progression when you live with MBC. In my case, the scans showed new lesions on my spine and in my ribs.
When I met with my oncologist, I reminded him what he told me in 2010 – as long as we keep it in my bones, we are good – that probably isn’t a direct quote but close enough.
For now, we continue to fight with radiation to stop the lesions from getting any larger (and hopefully manage some of the pain that comes with bone mets). My radiation oncologist and I are optimistic, based on past experiences with radiation, my body will respond well to the 10 days of treatment.
The oral medication I have been taking for three years has managed to keep everything else at bay so the current plan is to increase the dosage if my body can tolerate it, and hopefully, nothing new shows up on the next scans.
Bring on 2023.
May the radiation and new medication dosage continue to bring “good news” for quite a while
P.S. GO FROGS. Super excited to watch the #3 Horned Frogs play Michigan in the Fiesta Bowl on New Year’s Eve.
This week I shared a tweet. I don’t tweet a lot, so I was surprised when I last looked at my notifications and it had over 400 likes.
I mostly use Twitter to follow and interact with other cancer peeps. In fact, one of the main reasons I stayed engaged on Twitter was because of the #BCSM (Breast Cancer Social Media) group chat. Between weekly chats, people sometimes post questions and breast cancer peeps chime in with answers or recommendations.
I enjoy the anonymity of Twitter vs. Facebook. So there are some things I only share on Facebook, to close friends and family. And then I share cancer-related things on Twitter (please don’t judge me on where I share news, sometimes it is just easier to share with people who don’t ask 1,000 questions).
The news I shared this week was actually good news:
Tweeting leaves room for interpretation since there are limited characters. And sarcasm can be lost in translation.
It seemed very tongue in cheek for me to ask if a report says there is no evidence of disease am I still metastatic?
Of course, I am still metastatic.
That is the burden of metastatic breast cancer. I will continue to take drugs (currently Verzenio and Faslodex) as long as the medications work.
In response to my tweet, I had many people respond with “Congratulations!” or “I’m so happy for you!” Others tried to explain what it means to be metastatic – or what NED actually means. Since my question was more tongue in cheek, I just skimmed past most of those.
You may ask why did I not share this good news on Facebook with family and friends.
2022 has had its fill of ups and downs. This is certainly an up, however, the same week I got these results, my father-in-law was diagnosed with cancer and immediately put on hospice.
If you have read any of my previous posts this year, you will also know that my mother-in-law passed away from cancer in January. And then there is the non-cancer-related struggle related to breaking my femur in December when both of my in-laws were in and out of the hospital related to their illnesses.
As the tweet states, this is the first time in 11 years my scans have stated “no evidence of disease (NED)”. It would be hard to still be here 11 years after a diagnosis and not have had good news in the past. But in the past, I used to tell friends “these scans brought to you by the letter S for Stable.”
The change to NED or NEAD (no evidence of active disease) from Stable does not change my life much.
I will continue to get my monthly Faslodex shots and take my daily doses of Verzenio until a future scan shows progression (hopefully, not for a long time, but I still live scan to scan).
Doing a happy dance, as was suggested by Twitter peeps, is all well and good, but seemed ill-timed as we waited on news on my father-in-law. Also, with a broken femur, the snoopy happy dance is a little difficult.
At this point, while I am happy about the news, the person I would most like to celebrate with has been gone for almost 6 years. He is now reunited with his mom and dad in heaven, or the afterworld, or whatever you choose to believe/call it.
And I’m still here scratching my head wondering “what now?”
The book I have been writing off and on for several years is still calling to me. I feel obligated (yes, obligated) to make the most of this extra time that I continue to receive. I have researched some online fiction writing classes to help me finish the book and hopefully figure out how to get it published.
If you have other ideas on how I should be celebrating this news in the midst of everything else, please feel free to share your ideas.
Just a quick word of advice: Don’t break your femur.
Really. It is a long recovery. And frankly, I’m tired of it.
Today I saw my orthopedist again. And while the news really wasn’t bad, I left a little discouraged. I’m ready to put this behind me and move forward. Even if it meant another surgery, I was mentally prepared for that because I have that much trust in my surgeon and I know that I have recovered from worse. If having a small setback (like surgery to replace the hip and knee) in order to get me to where I want to be is what it takes, I was ready to go all in.
But that is not the direction the appointment took today.
Honestly, again, the news wasn’t bad. After looking at the X-rays he said there was some improvement in the bone calcification. We discussed how much weight I was putting on my left leg (we even measured it on the scale in the office) and tested my flexion (he gave me 80 degrees which is better than the 70 last time – so yes, I have been doing my exercises).
Break here for laughter: When the PA asked if that was all, the doctor, sitting on his rolling stool with his legs spread, said he could probably get it to 90 and I looked him dead in the eye and I said “you might be able to but I would probably kick you and you are not in a good position for that.” We all laughed and he rolled his stool back quickly.
When I mentioned the numbness that sometimes wakes me up at night the doctor suggested we get a total bone scan. I mentioned I had one scheduled for the end of April, but we are now pushing that up. And, just for good measure, they are throwing in an MRI to make sure there is nothing else that could be causing the numbness.
After I asked about PT, he somewhat grudgingly (in my opinion) agreed to let me start with strict instructions not to put more than 50 lbs of weight on my leg. Additionally, I asked about using forearm crutches, as the walker is really starting to get old. Short answer: No. Longer answer: Maybe in 2 more months (long answer as in time, not really a long answer)
I’m happy I am finally going to start PT. At least it will feel like I’m doing something towards moving forward. The past 4 months of being a couch potato and not being able to do much has been hard for someone who doesn’t like to just sit around (not having a hip didn’t even slow me down this much – I was working on using a cane in March after a December surgery).
Obviously I’m not going to be running any marathons or even a 5K anytime soon, but honestly, I wasn’t doing that before I broke my femur – but I do miss taking Guin to the lake and walking the trails. And I think she misses the outdoor excursions, too.
I have 2 months before I go back (unless something weird shows up on the bone scan or MRI). Hoping there will be even more bone healing in that time, especially with the weight-bearing and PT.
After 2 surgeries and a few setbacks with cancer, you might think I would be used to this “hurry up and wait” scenario.
However, when you are living every day to stay ahead of metastatic breast cancer, it is tough to not be able to do things like walk the dog.
The past 11 plus years (since I was diagnosed with metastatic breast cancer in 2010) have taught me to expect the unexpected. And, most of the time, I have learned to roll with the punches.
But March sucker punched me.
J.R.’s mom, Betsy, passed away after a very brief (comparatively) illness in late January. Betsy was 84 years old. Before she got sick, she was a very active, vibrant person. She was still active in a family business. I often referred to her as the Energizer Bunny. Her illness surprised all of us.
As mentioned above, I have learned to roll with these punches. Watching her decline was hard, but I’ve been through hard times before, and God knows, I am sure there are still hard days ahead.
But (seriously) March sucker punched me.
As I’m writing this post, I am also listening to a new to me podcast I recently stumbled upon (My Person Died Too) and the episode is titled “Those Griefy Days.”
So much of it rings true. Apparently, John, one of the hosts, lost his wife about five years ago, and the other host, Carolyn, lost her husband about six years ago. Given that J.R. will be gone six years in July, I can honestly relate to so much of what they are saying.
You might think that closing in on six years, the grief may not feel as raw as it did in the beginning. I thought so too, honestly. But I was wrong.
The nerve that grief clings to can be irritated at any time, and transport me back to 2016 like a time machine. I was not expecting March to make me feel like Marty McFly when he stepped out of the Delorean. I felt like I was standing in the middle of the hardest time of the early days of grief. Why has March been so hard?
Our wedding anniversary is March 6th. This year wasn’t a milestone anniversary (next year will be a milestone – 30 years), but it hit hard this year.
As I’m listening to the podcast they talk about having a plan for those griefy days. Especially those expected griefy days. And in the past, I have had a plan for those days. In fact last year, I went sky diving on our anniversary. It was a great celebration. Not because it was something J.R. would have wanted to do, but because I know he would have been very proud of me for doing something outside of my comfort zone and I know that he would have applauded (and called me crazy)
This year I did not have a plan. In fact, instead of coming up with a plan, I wallowed in self-pity. Not because of the anniversary and being without my person, but because of my broken femur and my limited ability to do much of anything.
It wasn’t until a few days later that I realized the self-pity had turned to anger. The raw anger I felt after J.R. died. I was MAD. So mad. At what?
Not what. Who! I was mad at J.R. (and God).
Twenty-nine years ago, J.R. and I stood in front of family and friends and before God pledged to take care of each other in sickness and in health.
[Note: We both took this vow seriously. J.R. took great care of me during my original diagnosis and again when I was diagnosed in 2010. And I would like to think that I took good care of him while he was sick, at least I did the best that I could at the time.]
I was FURIOUS that he was not here. Not only was he not here, but this was not the first time he had let me down – he wasn’t here when I had surgery for an infection in 2017. He wasn’t here when I broke my femur in December. He wasn’t here when his mom passed away.
HE WASN’T HERE! AND I WAS HOPPING MAD (literally since I wasn’t able to put much weight on my leg).
This weekend we will be hosting friends and family at the farm to Celebrate the Life of Betsy. We are celebrating on her birthday at a place she loved. Although Betsy has been passionate about soil biology for the past 20 years (Sustainable Growth and Betsy Ross Grass-Fed Beef), we have been reminded about all of the things she was passionate about over the years.
March has been a sucker punch. Betsy’s illness and death were unexpected. I think we all expected her to outlive all of us. I have cried more in the past two weeks than I have in a very long time. Tears for Betsy, for J.R. for my dad, for all my friends who have died too soon from cancer, and (selfishly) I have cried for me, for all of the unexpected that has become routine and expected in my life. These tears have been unexpected.
Maybe I got too comfortable expecting the unexpected. I am genuinely exhausted from always anticipating the unexpected.
If you follow me on Social Media, you already know I gave up spending my time on those platforms for lent (and yes, I know, the blog shares to my Facebook page and Twitter, I just won’t see any comments there).
Now I’m back to sharing on my blog to the few inquiring minds who want to know about my latest update on my broken femur.
After a few stressful weeks of trying to locate the surgeon who performed my hip surgeries, I finally found him and made an appointment.
Out with the orthopedist who performed the surgery on my femur; who was not covered by my insurance, and did NOT LISTEN when I asked him to reach out to the surgeon who Humpty Dumptied me back together again TWICE!
Buckle up…it wasn’t the kiddie train ride. It was more like Mr. Freeze at Six Flags where they shoot you out of a tunnel at 70 mph straight up a hill, you do some flips and turns and then you do it all again in reverse.
The appointment started with the same question everyone asks after seeing the x-rays: How did you do this?
I wish it was more interesting, but honestly, I fell on my knees in the grass while taking out the recycle. How did I shatter the femur and involve the joint? The doctor described it as “your femur acted like a pile driver” straight down into the joint.
After manually manipulating my knee and measuring the flexion, he pushed back on his rolling stool. Unsatisfied with the flexion there was a brief discussion about needing a possible knee replacement.
But wait… there is a new (for lack of the proper term) “procedure” allowing for a knee replacement and hip replacement all at once.
What? I could have a hip again? How weird would that be?
But this is the doctor who, when people ask about him, I tell them “you can see his mind working.” The rest of us can’t keep up with his thought process.
Concerned about what he saw/didn’t see on the x-rays, he sent me back for more.
This is where we reach the top of Mr. Freeze and start going in reverse. The second set of x-rays offered more clarity and in fact he saw”more calcification” which was a positive sign for all of us.
No actual smoke was seen coming from the doctor’s head, but the wheels were definitely turning.
So where did we leave the discsussion:
We have a 2nd date/appointment set for April 1st
No, there was no referral for Physical Therapy – why? He doesn’t want someone trying to overmanipulate before more healing has occurred.
For the 1st time in 3 months, I am allowed to put weight on my leg (not a lot, between 25-50 lbs)
Work to increase my knee flexion from 70 degrees towards 90 degrees (thankfully, my fabulous oldest daughter gave me exercises to help with this!)
I will check back in with you all after April 1st and let you know how things are progressing. Until then, if you see me out and about, ask me if I have done my flexion exercises for the day.