This week I had the “opportunity” to meet another new doctor.
Monday morning I woke up looking like Harry Potter after Hermoine cast a spell on him to disguise him from the snatchers (sorry for any spoiler alerts if you haven’t seen or read any Harry Potter books in the past 15 or so years).
This was the second time in six months I had to call my ophthalmologist after waking up with a red, swollen eye. My tear duct was infected. She prescribed antibiotics but told me I may need to see a specialist.
“Of course”, I thought. Why wouldn’t I need to see another specialist? A specialist I didn’t even know existed until Monday afternoon.
If anyone would have told me I would be meeting with a plastic surgeon, I would have laughed out loud. I have come to accept my scars and my wrinkles, I have earned every one of them. But this was a very special plastic surgeon. An oculoplastic surgeon, a plastic surgeon specializing in the eyes and face.
Amazingly, an appointment with the specialist was open on Thursday morning. If you are like my oldest daughter, you may think, it’s never a good sign when a specialist can see you that quickly. Spoiler alert, it turned out to be a great sign I was able to get an appointment that quickly.
First, my eye was still red and swollen, which made it easy for the doctor to identify my problem instantly.
Second, he immediately pulled out a pad of paper and wrote Acute dacryocystitis below the drawing of the anatomy of an eye. He explained the surgical procedure he could perform to prevent the infection from recurring.
Third, and this one shocked even me (although it really shouldn’t anymore) as we discussed my previous surgeries and history with metastatic breast cancer, he asked me if I had ever received Taxotere in my treatment. I had to pause and think for a moment, as I have had a lot of drugs during my 21 years of living with breast cancer. After going through the mental catalog of drugs I have taken, I finally remembered that Taxotere was one of the drugs I had during my original bout with cancer. When I acknowledged that I had indeed had the drug, he indicated he was testifying next month regarding Taxotere resulting in the side effect of Acute Dacryocystitis.
I left the doctor’s office grateful I had been referred to the practice. Specifically, the doctor with the knowledge to see, diagnose, treat, and identify the potential underlying cause of my recurring infections was the one who had the short-notice availability.
This morning, as I was processing that I would be having another surgery this year, it dawned on me that both of the surgeries are a direct result of side effects from drugs used to treat my breast cancer.
So it begs the question, from the perspective of doctors and caregivers, have I Exceeded Expectations?
In October, I will be starting my 15th year of living with metastatic breast cancer. I would hazard a guess that I have exceeded expectations by some.
If I were to give myself a performance review I would have to include the following as a justification for selecting exceeding expectations:
Cancer took my hip. My hip was rebuilt with 3 prostheses.
An infection 7 years later required the infection/prostheses to be removed
I learned to walk without a hip. Still going strong 7 years later
Currently on my 7th line of treatment (a repeat of a drug that was very successful in the past – wait, yep, it was good for 7 years)
Surgery on my jaw for osteonecrosis – a known side effect of two drugs used in my treatment.
Now, I have an upcoming surgery, also seemingly from a known side effect of drugs used in my treatment over the years.
Too bad the job of living with metastatic breast cancer comes with no opportunity for a salary increase.
I do have some amazing “co-workers” – amazing doctors, nurses, physical therapists, and mostly, the other people I have met who, like me, are trying every day to exceed expectations living with metastatic breast cancer.
I realize it has been a while since my last update. Was it really in November? Yes, I guess it was (I looked back at the date of my last posted update).
Let’s see. What has happened since November? Well a lot really, but some of it is not my story to tell, let me just say it has kept me busy.
As for me, I enjoyed my hiatus from treatment, but as we know, it was just a temporary hiatus.
I had scans in February. They were ambiguous. Which sent me to have a PET scan to determine if the ambiguity was in the reading or if any activity may be better seen and picked up with the PET.
The PET scan also came back ambiguous. [Insert sarcastic shocked face here.]
An unexpected (are they ever really expected, sometimes yes, sometimes no) area lit up on the PET scan which sent me down a crazy ride.
My lower right jaw lit up on the PET scan. I tried to convince the doctor it was just an infected area of bone growth my dentist had noticed. I already had an appointment with an oral surgeon to discuss what was going on.
As most good oncologists do, he wanted me to have it further looked at by an ENT. Just to make sure.
My dentist had referred me to an oral surgeon who believed it was osteonecrosis of the jaw, basically, bone cells that die and poke through your gum – it is amazing the vocabulary you learn when you are a cancer patient. He also suggested I see an ENT.
All roads lead to a visit with an ENT
My ENT appointment didn’t go as planned (yeah, I know, another shocked face emoji). The doctor I saw took one look in my jaw and told me that was not his specialty, but he knew a guy. In fact, the guy was his partner. He told me to wait there, and he would send in his partner to take a look. I ABSOLUTELY love a doctor who admits when something is not their expertise.
More discussion, more open your mouth wide. And then, let’s do surgery and send it off to pathology – you know, just in case.
Oh yeah, in the meantime, after several discussions, my oncologist and I came up with a new treatment plan. We agreed to give Xeloda a try again. If you don’t remember, I was on Xeloda for 7 years previously, but that was three years ago. Some research has shown that drugs can be effective again after a break. He agreed to try it again (maybe someday I will have my picture in a medical journal). So in February, after a short hiatus from medications, I started back on Xeloda.
And now for the rest of the story
After a few false starts, I finally had the surgery to remove the bone in my lower jaw on May 3rd. Due to the type of procedure done, I was on a liquid diet until he could schedule the follow-up surgery (I will spare you the details on that, just know there was no way to chew food).
As my luck would have it, I had my surgery at Ascension Seton in Austin. When I returned to the doctor the following week for my follow-up visit, and to get the results from the biopsy, I learned the Ascension systems had been hijacked. No biopsy results were available, and they weren’t scheduling any follow-up surgeries.
What I originally thought would be a 3-week liquid diet was now a 4-week liquid diet and the follow-up surgery was being performed at a different location (honestly, this second surgery was a breeze with their processes).
It wasn’t until this past Tuesday (June 18th for the record), that I finally got the biopsy results.
Good news! It was not cancer! It was, in fact, osteonecrosis. Thank you to Aredia (unknown number of doses when I was first diagnosed with metastatic breast cancer) and the one dose of Zometa that I had last year which has the unfortunate POTENTIAL side effect of osteonecrosis of the jaw.
So there you have it. I am currently on Xeloda. I had scans again last week and everything is stable. My jaw is healing nicely. Still a few stitches that annoy me but will dissolve soon enough and I can eat solid foods again.
Even with the two surgeries, 2024 is still better than 2023. Hope it continues. Until next time, if you see me out in the wild, say hello. I love to meet and see the people who are reading my story.
Well hello. It’s been a while. I have been busy living life with no chemo 🙂 We do finally have a plan and everything is good right now.
I have started a little project in my spare time and thought I would share a small peek at what I’m working on.
In January, I signed up for a free webinar about writing your memoir. I have been stuck in my writing for a long time and was looking for inspiration. The next day, I was driving and thinking about what I heard in the webinar. And just like that, the title of my memoir hit me.
If you have ever been in a conversation with me, you may have heard me use the phrase “What’s that word?” It is frustrating to be in the middle of a sentence and stop abruptly because I can’t form the next word.
Chemo Brain! Even as I age, I still refer to it as chemo brain because who wants to blame age, when they can blame chemo?
Below is a sample chapter I have been working on. I plan to start each chapter with a word (or phrase), the definition, and a quote with that word. Hopefully, it will be informative, helpful, funny, or maybe just a fun read.
Support Group – a group of people with common experiences and concerns who provide emotional and moral support for one another
“’Tis not enough to help the feeble up, but to support them after.” – William Shakespeare
Opinions. Everyone has one. Sometimes people ask for them. Other times they are forced upon us whether we want them or not. My favorite opinion is the unsolicited one (please hear the sarcasm as intended here).
Whether you want to hear it or not, eighty percent of people around you will share their opinion (that number is not based on science, but just my personal experience).
It may be as inconsequential as what color your next car could be, or if they like shoes you are wearing that day. Sometimes people say things and it comes across as a nice compliment. Such as “The shirt you are wearing really brings out the blue in your eyes. It is lovely on you.”
When that happens, you can smile and say thank you. You may even think about it later and get a little smile again just remembering it. It can turn your whole day into a positive outlook.
When you have a health issue, such as cancer, for some reason everyone is suddenly an expert and offers their opinion about everything. From who the best doctor is, to how you should change your diet, to the best non-toxic cleaning products. Or every non-western medicine, alternative medication/snake oil option out there. Once someone hears cancer, the Bat Signal must go up and everyone is sending you their “tried and true” cure. But that’s another chapter.
Within a few days of receiving my diagnosis, a friend (she was my daughter’s second-grade teacher and a lovely person – none of the following true story is a reflection on her) offered her opinion and suggested a Support Group. She gave me the information about a breast cancer support group hosted at her church. The church was close to my office and they met during the lunch hour.
Since this was someone I admired and thought highly of, I thought I would give it a try. The friend knew some of the women personally and thought it might help. Having had no experience with what a support group should look like, I blindly agreed to go.
Between the last surgery to have the port-a-cath placed and my first scheduled chemotherapy, I was finally back in the office and working. In good faith, I got in my car at lunch on the day of the support group meeting and drove to the church parking lot. As I sat there questioning myself, wondering if I really wanted to do this, I reminded myself I had agreed to give it a try. I got out of my car, opened the door to the church meeting room, and entered the room.
For someone who has always considered themselves an introvert (well, now I think of myself more as an ambivert), going to an unknown place, and meeting unknown people was considerably outside of my comfort zone.
As I expected, all eyes turned to me when I walked in the door. A hush came over the room as the person in charge came to greet me and make sure I was in the right place. After exchanging pleasantries, and ensuring me I was in the right place, she handed me a label to make a name tag. The low murmur of conversations started back up and the leader dragged me around to meet everyone before asking everyone to take a seat.
Just like in every movie or TV scene with a support group in it, there was a circle of chairs in the middle of the room. I let everyone take their preferred spot before sitting in one of the empty chairs. The woman who greeted me at the door had an official-looking clipboard and read the ground rules for participating.
According to the ground rules, no one had to participate if they didn’t want to. And man, did I not want to. I was content just sitting and listening to the others. After all, this was my very first experience with a support group and I wanted to see if it was something I wanted to participate in.
After reading off the checklist, she asked for a volunteer to go first. To this day, I can’t tell you the name of anyone I met that day. I’m pretty sure I have blocked most of it out of my memory. Something I never really want to relive. But here is the best synopsis I can offer.
Honestly, my head was still spinning from the past month’s activities: the mammogram with a suspicious lump, a surgeon who didn’t think it was anything to worry about, surgery to remove the lump, a follow-up surgery for clear margins and lymph node removal and testing, meeting an oncologist, another surgery to insert a port-a-cath so I could start receiving chemotherapy. And a scheduled first day of chemo on November 6. As I mentioned earlier, time speeds up when you have cancer. From the end of September to November 6 is a very short time when your life has been turned upside down.
Most of the women, or more likely all of the women except me, were on the “survivor” side of the coin. I was the only one who was new and about to begin treatment. And nine out of ten (another made-up number because I don’t remember how many women were there that day), were very pleasant and discussed issues they were having with side effects or upcoming appointments for a routine follow-up. I was just sitting there listening, with no intention to add to the discussion.
The spotlight fell on me. I didn’t want to speak, but the leader started asking questions and others joined in: “When were you diagnosed?” “Right side or left?” “Do you have an oncologist?” “Do you know the treatment plan?” “Ductal or Lobular?” “What stage?” “Have you gotten a second opinion?”
The questions seemed to be coming at me rapid-fire. I’m sure I looked like one of those cartoon characters whose head was close to spinning off and their eyes were the size of quarters as they bounced around on springs. I looked left, right, every direction trying to keep up with the questions as they were asked. “Early October” “Right” “Um, yes” “Sort of. I think he said 8 treatments of chemo.” Then shaking my head as I couldn’t keep up anymore. I couldn’t remember if it was ductal or lobular, I didn’t know the stage. I felt so unprepared for the peppering of questions. I had hoped to just sit and listen and not participate. Yet here I was trying to answer questions. Some of them I remember later thinking I don’t even know what they are asking. Unsure where to turn or who was going to ask the next question that I didn’t know the answer to, I tried to look at the lady with the clipboard. But before I could catch her eye, one very brash lady looked directly into my eyes. She was waiting for the answer to her question about a second opinion.
Weakly, I said “No. I haven’t”
Well, that wasn’t good enough for her. As the experienced breast cancer patient in the room, she knew exactly what needed to happen and I was going about it completely wrong.
It felt as if she came and stood directly over me (that probably didn’t happen, but it was 21 years ago). She said “On Tuesday I’m driving you to Dallas to get a second opinion from my oncologist. It sounds like you don’t have all the information you need.”
And yet to me, it sounded like she was going to kidnap me and drag me kicking and screaming to Dallas whether I wanted it or not. She felt entitled to give her opinion without asking if I wanted it or not.
My eyes must have been bulging out of their sockets. The woman in charge finally got Ms In Your Face to sit down and she closed the meeting.
When I tell you I couldn’t get out of that room fast enough… I looked at my watch and told the ladies thank you for letting me sit in, but I need to get back to work. And I ran to my car. I made it back to work somehow, and when my husband asked me about it later, I assured him I had given it a shot, but I was NEVER going back.
If that is what a support group is, then I want no part of one.
I found out the next week the woman usually in charge was not there that day. She called me after hearing from several of the innocent bystanders at the meeting what happened and apologized profusely. It seems she was the only one in the group who could keep Ms In Your Face under control and she had to take care of a family emergency that day. She asked me to come back to another meeting when she would be there. I politely refused. We had a very nice long chat and she understood why I would not be returning.
I did NOT, in fact, go to Dallas with the lady who thought she had the only “right” opinion about me and what I should do with my body.
According to Mr. Shakespeare, that group was supposed to lift me and then support me afterward. Instead, it took me 14 years to ever step foot in an organized support group again.
Let me know what you think! Are there any words that you think would be fun to include? Don’t worry, I have a long list to work on if you don’t have any suggestions.
I’ve lived through hearing the news I wasn’t expecting more than once. If you have followed me for any amount of time, you know that to be true.
This week I heard news again that was unexpected.
This time it was different.
This time it wasn’t bad news.
It wasn’t ” you have cancer.” It wasn’t “your husband has cancer.” It wasn’t your father, or your mother-in-law, or your father-in-law has cancer.
This time the news was good-ish.
I’m still processing the news, so forgive me if I seem confused.
First, let’s go back in time for just a minute. In May, I started Taxol. One of the main side effects we were concerned with was neuropathy.
As time progressed, the neuropathy in my feet was getting worse. Since walking is already challenging enough with a lift, the idea of the neuropathy getting worse, or even developing into drop-foot, was something we were anxious to prevent.
From May through September of this year, I had 19 Taxol treatments.
The last infusion was 9/26/23. Officially, the doctor and I decided together, on 10/18/23, that I would not continue with the Taxol due to the neuropathy.
This past Monday I had an appointment with my oncologist. I went into the appointment with the expectation of discussing “what’s next.”
I am starting my 14th year of riding this same roller coaster.
Sometimes there has been new construction, and new loops or twists have been added, but the roller coaster has had one constant: I was always on some kind of treatment.
Monday the conversation took a new turn.
After discussing the latest scans, which showed everything to be stable, the discussion turned to what’s next. We also recently had blood work done to determine if there are any genetic discrepancies that would suggest a “best option” treatment.
The report came back without any clear-cut suggestions for a new treatment.
Our conversation continued after discussing the results of the scans and the bloodwork. And while we both agreed the most ideal option would have been another pill, there are currently no new pill options available.
After some back and forth, my oncologist finally suggested we don’t do any treatment. For the next couple of months, I will go into the office monthly, get bloodwork, and see either the oncologist or the nurse practitioner.
If something feels off, I am supposed to call the oncologist. But at this point, I am officially off of treatment for the next few months.
I do not know how I feel about this. I have always said, “I will be on treatment until it doesn’t work and then we move to the next one.” This deliberate, no treatment break feels very odd.
While I am grateful. I am also very apprehensive.
The past year has been one of the hardest. Maybe because it is the most recent when I really think about some of the things I’ve gone through in 13 years.
Perhaps this unexpected news is a great opportunity for my body to recover. Perhaps the Taxol will continue to work for months to come.
Hopefully, I can shine and sparkle while I try to hold onto my unicorn status.
For now, I will charge forward. For only time will tell how this plays out.
In 2010 when I was diagnosed with Metastatic Breast Cancer, I was shocked, dismayed, annoyed, angry, stunned, and overwhelmed. Even though in the back of my head I already knew when the oncologist’s office called and said the words “Your cancer has metastasized.” I sat outside of the office building where I was working, called my husband, and cried while I sat and waited for him to drive the 20 minutes to pick me up. I knew the statistics of people (not just women get breast cancer) living beyond five years with metastatic breast cancer was not great. As I sat there crying, I was scared I would not see my kids graduate from high school, much less college.
As many of you know who have followed me on this blog, or who know me in person, after several tests and scans, my doctor told me that it was good news (in the cancer sense) that the metastasis was only in my bones. In other words, since it was not in any organs I was fortunate. There was a chance I would see my kids graduate.
Since October 2010, I have been on six different medications:
Arimidex (10/10 – 12/11)
Faslodex (1/12-4/12)
Xeolda (5/12 -11/19)
Verzenio with a shot of Faslodex (12/19 – 2/23)
Enhertu (3/23 – 4/23)
Taxol (began 5/23 and currently still receiving weekly infusions).
In addition, I also received an infusion of Aredia monthly from 1/11 – 3/13 and then every 6 months for 10 doses. Aredia was used to treat bone damage and reduce excess calcium levels in the blood.
The thing that Arimedex, Xeloda, and Verzenio have in common is they are pils. Other than having to go into the clinic monthly (or sometimes every six weeks) to receive the Faslodex shots when that was part of the regimen, get blood work, and see the doctor, my cancer treatment was a once or twice daily pill(s). There were no outward visible signs that I was receiving treatment for MBC. The side effects of the drugs, while different, were not visible to the general observer.
Each change in medication was a result of progression to my bones, meaning there was more bone that the cancer was attacking. Radiation helps stop the cancer from growing and reduce the pain. Over the years, I have received radiation on my hip, ribs, and spine (more than once, different vertebrae). These drugs have helped keep the metastasis in my bones and I have not had any metastasis to organs, which remains good news.
Why am I recounting all of this?
In all of those years, my cancer has not been what many would consider Visible.
What do I mean by that?
Cancer that has metastasized to the bones is hidden from the outside observer. Unless you know me in person and know my story, the only outward, visible sign of my cancer was that I walked with a limp from my first hip surgery, Then, after my second hip surgery, I used a shoe with a lift and walked with a cane. These outward signs could have (and have been numerous times over the years) been attributed by others to many things besides cancer.
Again, you may ask, why are you recounting all of this?
2023, as Miley Cyrus sings “Came in like a wrecking ball.” Actually, it started in November of 2022, when my scans once again showed there was progression in my spine. Unfortunately, I’m all too familiar with what that means. If you haven’t kept up with the blog (and that’s ok) but want to read more about all that transpired in March/April/May/June you can read more about March, April, May, and May/June
First, radiation. Second, we discuss options for treatment. Since I had been on Verzenio for three years somewhat successfully, my doctor wanted to extend the use after radiation by increasing the dosage. Within the first week, my body was unable to tolerate the higher dosage. This meant another change in medication.
As I mentioned above, for 12 years, my treatment has mostly been in the form of a pill of some kind. Unfortunately, that is no longer an option for me. We have run out of pill options. The options for me now are infusions. Depending on the drug it could be weekly, as it is currently, or every three weeks is another typical time frame. It all depends upon the drug.
Suddenly, to those not aware of the fact that I have been on some kind of treatment for 12 years, my cancer is Visible.
I look more like a cancer patient now as the Taxol has made me lose my hair. The fall I took in late May has caused me to use a walker which (maybe just to me) makes me look more frail.
I didn’t really understand this until my oldest daughter pointed it out. She reminded me that most people do not/have not understood that I have been in treatment for 12 years as there were not any outward Visible signs of cancer. I have a few people in my life who understand this. But, honestly, most do not.
The truth is I am continually explaining to people that Metastatic Breast Cancer is never cured. Just because I didn’t look sick, doesn’t mean I wasn’t still battling the MBC beast that has chosen to attack my body.
October is on the horizon, which has a lot of triggers for me. Both of my diagnoses came on October 8th, 7 years apart.
I ask that if you are still reading this post, first Thank You, and second if you plan to donate to breast cancer research please look at Metavivor.org. 100% of donations go to fund research for metastatic breast cancer, which helps me continue to fight this devastating disease.
If after reading this you have any questions, I am an open book. Please ask. I will do my best to answer any questions you have.