Adult Candy

I used to laugh at people who take handfuls and handfuls of pills. Those who need day of the week pill containers and seek out drug store deals and coupons.

But not anymore.

When we went to Europe last year I couldn’t even find a pill manager large enough to accommodate all of the ones that I take now.

Jokes on me, huh?

It’s not all prescriptions (although if you have good insurance, that would be easier on the purse) but endless lists of ‘supplements’ that are not covered, will kill you – even if you get Walgreen’s Buy One Get one deals or order from a website or continuously scour the shelves for the cheapest deals for the right meds.

How bad is it? I had a great celebration the other week because my plastic surgeon TOOK ME OFF of the medication that was helping my ‘pocket’ more happily accept the implant. 😊

Now there is a reason to pour a glass of wine.

I realize that there are LOTS of people who take more meds that me. But I was that person who had never been on any sort of long-term prescription except birth control pills and rarely visited the doctor and had never had any surgery except oral surgery (removal of wisdom teeth) prior to my mastectomy at age 55.

So many of us older people seem to ‘collect’ prescribed and recommended meds as we’ve aged and the assortment often looks like jelly beans or some sort of hard candy mix – hence the Adult Candy headline. I’ll bet we could take quite a picture if we all (our immediate social circle) displayed our drug caches!  I used to get a chuckle out of the fact that my parents each have shoe boxes for storing and transporting their medications. Now I see the logistics of it.

It’s just that when one of your prescription doses is 9 pills (3 3xday) the quantity starts to pile up! So – all this has been a shock to me.

Of course taking a pill is better than 16 4-hour chemo infusions or 33 rounds of radiation, but there are still side effects – physical and mental.

The physical side effects are anything from dry mouth (actually dry everything) to sleep disruption to digestive chaos. But mentally, I just think I feel differently about the me who has to tote around a backpack full of meds everywhere she goes, pop medication from purse pill case in the midst of meeting or business lunches and plan food and water intake around monitoring temperature after taking meds.

In fact, I thought Customs would surely stop me since I had to take 90 little white pills, 30 large white pills and 10 of all of the others. Thank goodness I had not yet started on the collagen* I’m on now or I would have had 60 of those with me. I joked that I looked like a pack mule for a drug lord.

Anyway – it makes it perfectly clear that I can’t say that I’m a healthy person like I did for the entire 55 year period before my diagnosis.

Now I’m ‘healthy’ with that big qualifier – for my condition.

*The collagen is accompanied by Biotin. These two drugs support hair and nail health – since Ibrance does have the potential for causing hair loss. Hopefully, these supplements will keep that from happening. I still have my wigs but I wouldn’t choose going down that path again.

Stubborn Got Me Into This. Can Stubborn Get Me Through It?

If you know me, you know that stubborn describes me.

You can be nice and call it:

• head strong
• persistent
• driven
• determined
• tenacious
• unyielding

Or you could be a little less complimentary and say:

• inflexible
• pig-headed
• uncooperative
• mulish
• cantankerous
• contrary
• difficult

Or get fancy and/or archaic and call me:

• recalcitrant
• obdurate
• contumacious
• froward

If it gets me through this, call me whatever you’d like.

It seems that, thus far, taking the ‘this disease will not win’ attitude has had some value.

I just can’t accept sitting and wondering if side effects or symptoms are going to show up, irritate me or devastate me. I have to keep trying to live my ‘normal’ life (whatever the heck that is now) and do the things that I want and need to do.

With this more long-term version of the ‘c’ disease, I’ve learned that I may have to alter the way that I do things, but I suppose getting the intended result it what is most important.

It’s funny that this trait is a very positive attribute when called some things, but negative when called others. It’s all in the way you look at it, I suppose. Just like cancer and all its related treatments, symptoms and side effects. The way you respond depends on how you look at it.

I’ve seen the way it looks to give up, give into it, curling up in a ball and throwing a big pity party. That isn’t me. That isn’t the stubborn, determined, pig-headed, froward me. And considering how ‘well’ I’m responding to and tolerating treatment, you can say that is getting me through it.

But how did stubbornness get me into it?

When you’re young (I mean in my 40s – young is all relative…) I got clear mammograms and thought to myself ‘why should I go through that on a regular basis if there is no problem?’

Right. Maintain that attitude and it will get you exactly where I am or worse.

Mammograms aren’t a one and done thing. Duh. You have to go back – keep checking and keep checking and keep checking. A few bad cells could show up in the 2 weeks after your last mammogram. And the older you get, the more often you go back.

I ignored the reminders for mammograms. I threw every one of them away. And I was throwing away my potential for catching my early instances of cancer.

I also thought there was ‘nothing to check’ because my self exams didn’t uncover anything. And of course, there was no way I was missing anything or breast cancer could manifest without a tumor.

Now I laugh at the foolishness. But don’t. Take care of your girls.

If you want to you can justify it by saying that lobular invasive cancer is rarely caught in very early stages because it isn’t a tumor that you see easily. So early mammograms would uncover nothing. And dense breast tissue masks the lobular type as well. But I can just about guarantee that – if I hadn’t made excuses for myself and justified my stubbornness in having regular mammograms, my breast cancer would not have been detected as late – in its advanced stage. Don’t play breast cancer roulette.

That’s how stubbornness got me into it.

Now I have lots of scars, an implant on 1 side, inflexibility in my treatment shoulder and an arm that requires special care to combat lymphedema.

I would stand topless on a corner if it would make everyone realize that monitoring their girls is critical.

I little squeezing (or even a lot of squeezing) now and then is worth it if it means you can mitigate your potential for taking the breast cancer journey.

Navigating Potholes

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.