I was embarrassed to look at the date of my last post. I totally deserted those who were following me through my blog.
I apologize. I let myself use the “I’ve been too busy to blog” excuse and ignoring the good therapy I was gaining from articulating this experience.
I don’t mean that to make it sound “all about me.” It’s more that this is therapeutic and I should consider it part of my therapy instead of something extra that I make time for (or not obviously)!
So I will bring you up to date.
We say the breast cancer journey never ends. It’s no lie. You never run out of shoes that can drop.
It seems like I’m navigating a road with many potholes. Some large – like they would swallow you up if you hit them. Some are small – and just irritating.
Some big ones even leave a mark.
Well mine did. And the mark makes my journey very active. (with doctors’ visits and all sorts of scans, injections and pills anyway…)
Let me frame this for you.
We (Dennis and I) were preparing for a trip to Prague, Vienna and Salzburg with the our choir. We were so excited because my really active treatment seemed to be completed and working successfully. I was feeling good, getting back in shape by running again and ready to climb the hills in Salzburg in Julie Andrews’ footsteps (LOL)…
About 15 days before our departure date, I had some pains in my stomach that felt like the beginning of constipation (which is something that you are accustomed to during the chemo and especially the radiation cycle). I did all the usual things but the symptoms persisted and then worsened.
I had been told when I had my required colonoscopy that I had diverticulosis and the propensity for diverticulitis but never had trouble with flare ups.
Long story short – this WAS a flare up and one of the most painful conditions I’ve ever experienced. During the process of diagnosing this, my GP recommended a CT scan. The diagnosis was confirmed and so was something else. It looked like three lesions on bones. Potholes in my future were more CT scans, bone biopsy, diagnosis, treatment plan, and treatment…
Things happen fast when this sort of thing arises. You are given a view of all the potholes on your road.
And then there is the trip to Europe that we need to keep from falling into one of these potholes…
So – on the Friday before we left on our trip, the CT scans were checked off the list. (A pothole that didn’t seem bad at first)
My oncologist had results back by afternoon. When those kinds of things happen, you understand what serious is. She made her initial diagnosis but needed to confirm that with a bone biopsy.
Initial diagnosis: Metastatic Breast Cancer (MBC) – metastasized to bone. Three lesions (femur, pelvis, spine)
No matter what, there is no part of that that sounds good. Pretty big pothole. But I wasn’t going to let it be a pothole that swallowed me up. But it WAS going to leave a mark.
“But we leave for Prague on Monday!”
My bone biopsy would have to be done when I returned from my trip. So diagnosis would not be confirmed. I COULD hold on to the possibility that everything just LOOKED like cancer and it was something else. Or that it would be a different/new cancer instead of MBC – which would mean different things for my treatment.
But I didn’t. I was being a realist about this. I believed my oncologist statement that the indicators point to MBC.
I have to say that my oncologist is amazing. In the midst of all this she managed to help me relax and face our trip with positivity.
I left the office – knowing my biopsy date – but focusing on an exciting 10 days across the pond.
Limit information flow.
We decided the best way to enjoy the trip – and to keep the focus on the purpose of the trip – was to keep my news and impending diagnosis to ourselves. My parents knew – but that was it.
The trip was like 10 days of the most wonderful therapy possible. But on the return trip in an uncomfortable and crowded airplane, I had laser beam focus on my situation. I prayed a lot and just “thought” a lot.
Biopsy day was a little unnerving. I just wanted it to be over with. I wanted to know what was ahead and get to it.
The biopsy pothole was actually an easy one. Pretty quick procedure. Not much pain. Just had to wait on the results, of course. Yeah. Just wait.
Finally the word was in. My oncologist was accurate (there was no reason to think otherwise, really…)
Pothole? Yes. Big one. MBC, bone lesions with active disease (or as they say it, I light up the bone scan…and will have to have treatment till I don’t and even after that … to make as sure as we can.)
But this pothole isn’t going to swallow me up either.
This is manageable. This was detected early. I’m having NO symptoms If not for the diverticulitis, I would have known nothing and they wouldn’t have known to check for anything – and it would be likely that we would have only uncovered this after it was beyond treating with drugs instead of radiation.
Symptoms: pain, tiredness, lethargy
The person in the commercial.
I would start (immediately) Ibrance (targeted therapy known as a CDK 4/6 inhibitor-not a traditional chemotherapy) and Fasolodex (hormore inhibitor) as well as Exgeva (bone booster). There are side effects and I could basically feel terrible all the time. I am now the person in the Ibrance commercial…
This is not a pothole that I was willing to just allow myself to hit be consumed by. Always feeling bad didn’t seem like the way I would handle this – and it wasn’t.
I began the treatment in August and I have had minimal side effects. Little digestive and gastrointestinal disruption, little change in the arthritic nature of my hands/fingers and the neuropathy in my feet, little change in hot flashes, little change in sleep disruption. What I’m saying is that I still have all of these side effects but the Ibrance isn’t making them worse.
The bone trauma of treatment inspired a few things:
-Dental work…. Anything that needs attention needed to be done. I would have to interrupt the Ibrance doses to get the work done (NO! This wasn’t going to be pretty.) So the 3 crowns I had been putting off suddenly had to be done – as quickly as possible.
-Stop the running for now – because of the lesions on my femur and the impact that running causes on legs, I was to find alternative exercise for the running…. I’ve been running since high school. This was a little traumatic. I didn’t react well. I used my monthly medical activities and work as excuses to just skip the exercise – well except for walking the puppy…. And that wasn’t the good choice.
I have small potholes: frequent visits to the same infusion lab and unit as I visited during my original chemo treatment and with my oncologist. 3-month cycles of CT and bone scans. But is this really a pothole to see the wonderful people again who did such as awesome job treating me when I went through chemo infusions?
And so life goes.
Like the Ibrance commercial says: It’s my new normal.”
And what I’ve learned about THIS pothole is that it IS manageable. That isn’t a bunch of flowery bull. I’m being realistic.
It has changed my life because I always have “the” worry that symptoms will start or cancer will rear its ugly head in another organ system. It was like that before but now my possibility for cancer’s return is higher.
Pothole. Deal with it.
Faith. Support of family and friends, Amazing doctors and medical care, Resources those who have been fortunate enough to avoid cancer can’t imagine…
In those ways, I can call myself lucky. Pothole navigated.
My 3-month scan was good news! The Ibrance is working. No active disease showed up ANYWHERE. Even in the places on bone where it was appearing. The lesions are still there but they are scars.
Huge pothole navigated.
My 6-month scan showed the same (amazing) results. No active disease! (Cartwheel in doctor’s office!!)
It’s business as usual. Now that I know the meds are working, I don’t mind that daily pill or 3 monthly injections. In fact, I look forward to them. They are my baseball bat that I’m using on cancer.
I also walk more. As much as I can. And we just joined the JCC (Jewish Community Center). What a facility! Several friends (who happen to also be choir peers) are members there and 1 teaches classes. I have never been a big group class exercise person but my first few classes have been great!
We sort of have a handle on it right now. Watch out for potholes and figure out (quickly) how to minimize their impact to our lives.