Return of the Roller Coaster

Over three years ago, when I was first diagnosed, I wrote a post about feeling like I was on a roller coaster. My friend Katie gave me that visual, along with the permission to throw my hands up and scream some of the time. Well, I have felt like I've been on a roller coaster more than I'd like these last few years. Sometimes there's a long stretch of easy, winding track, but then the steep inclines and the gut plunging dips come along.

Last week was my routine 6 month check-up.  It's really nice to not have such frequent visits, except that I now usually have a huge list of questions for Dr. Shah. This was no exception.

My lab results were good. 
Platelets holding at 88K
Everything else in the normal range

Unfortunately, I've gained 7 pounds in the last 6 months. I kind of knew this, but it was still depressing to see in my chart. I've been more active this winter than in any winter I can remember, but not as active as I'd been the previous 6 months. I think I need a workout buddy. I'm hoping that volunteering with Team Phoenix 2018 will get me back into a better routine. (I wonder if I can get a copy of this year's plan and follow along on my own to build back up to that awesome strong place that I was last year...)

I'm nearing the two year mark on aromatase inhibitors (first Arimidex, now Femara), so I will need a bone density scan before my next appointment in 6 months. (The aromatase inhibitors decrease estrogen, which frequently results in loss of bone density.) 

While Dr. Shah was examining me, I mentioned that I'd had some trouble swallowing on occasion (usually when I'm drinking water and I kind of choke on it) and that I felt like my neck was a little swollen. She felt my neck and then looked at it, and said, "Oh. And the swelling is uneven." I said that I felt a lump lower, too, on my left clavicle. She said, "let's order an ultrasound to make sure nothing is going on."

And here's where the roller coaster takes off.

My brain thinks all of the following, in this order:

• How nice that Dr. Shah senses my concern and is ordering an ultrasound to put my mind at ease.
• She must have an inkling that something is wrong, or else she wouldn't have ordered the ultrasound.
• (I'm just going to google what a swelling in the neck/throat after cancer could be.)
• Oh yeah, my thyroid is in that area. Thyroid issues cause weight gain, tiredness, numbness or tingling in the hands, hair loss. I have all those things. That might explain why I have all those things.
• Huh. Research shows that there is an increased chance of thyroid cancer if you've had breast cancer.
• Oh. My. God. I have thyroid cancer. I KNEW IT! I can't go through cancer treatment again. I just can't.
• OK, a secondary cancer is actually better than metastasis of the original cancer. There's better outcomes, as long as the secondary cancer isn't Stage IV. I can do this.

Of course my insurance plan has just added a new program called, "CancerCARE," and touted as "helping prevent you from receiving inappropriate or delayed care." Their oncology nurses review every treatment plan so you get "the best care." What it really means is that now every cancer-related treatment must get additional approval from their oncology nurses before the patient is allowed to receive it. So I didn't get the ultrasound for almost a week. Plenty of time for all those crazy thoughts to percolate.

Then I'm in the ultrasound and the tech looks at my thyroid and tells me it looks great. At least 50% of people have benign nodules in their thyroid--usually lots. I have one tiny one. (No thyroid cancer! But then what explains my exhaustion and weight gain?)

She then moves to the left clavicle and it takes awhile to get a good image of the bump on it. It is not, as Dr. Shah thought, just that my clavicles are uneven. It is actually a lymph node that is located in front of my clavicle, and it's somewhat enlarged. A lymph node can be enlarged for any number of reasons, so this is just a wait and watch situation. But at least nothing to worry about now. 

The last thing Dr. Shah had discussed at my appointment last week was something I'd asked her about at my last two appointments: using a bisphosphonate (Zometa or others) to prevent osteoporosis and bone metastasis. The Femara that I am taking (as with any aromatase inhibitor) is known to have a relatively frequent side-effect of osteoporosis. One of the ways to counteract osteoporosis is with use of a bisphosphonate, which acts by inhibiting osteoclasts (which break down bone) and allowing osteoblasts (which build bone) to work more effectively. Research showed that when women were on bisphosponates for bone loss, they had a decreased chance of bone mets developing. As with all research, a single study doesn't prove anything, but three studies back in 2011 gave at least some support to starting bisphosphonates even before bone loss occurs. I'm not sure if Zometa has made it into standard of care, but Dr. Shah actually was the one who brought it up this time. It is an infusion (i.e.: given by IV) that you get every six months for five years. Side effects include a few days of flu-like symptoms, and possibility of osteonecrosis of the jaw, which is much more scary.

And this brings me to even more frustration with CancerCARE. Normally, I'd have left the exam room after my check-up and walked to the infusion bay, gotten my Zometa, and not had time to worry about it. Instead I was not able to get approved and then administered the Zometa for 9 days. 

In the end, it all went well. Greg saw how worried I was (I get PTSD when I have to sit in the chemo bay), and went in late to work so he could make sure all was going well. I got an AWESOME nurse who took her time to find the best possible vein, and got my IV in on the first try. I have had the flu-like symptoms (achy, chilled, tired), but that improves when I take a Tylenol and an Advil. And I don't have to do this again for six months! 

And so I'm back to that nice, cushy straight-away on the track, where it's good to be outside, feeling alive. Where I vow to do my best to appreciate all the good in my life--including my current good health. Where I think that this may actually be the time where I stop worrying about every little thing being a return of cancer. 


For the record, I've never liked roller coasters...

Three Years

Happy Three-year Cancerversary to me!

Counting survivorship can be tricky, as there are many different dates that you can count from--first having symptoms or suspicious mammogram, clinical diagnosis, surgery, end of treatment.  The way I originally had it explained to me, the day where you first have NED (no evidence of disease) is when you start counting. Usually that's after surgery. Any additional treatment (chemo, radiation, targeted therapy) is more prevention than treatment. So I'm going with that.

Survivorship is a strange thing.  It takes a lot of faith that treatment worked, because you really don't know for sure. In addition, unlike with some other cancers (like my mom's lung cancer), with breast cancer there are usually not regular scans or checks for recurrence--unless symptoms appear that cause concern. Five years is one of the traditional measures of survival, but not necessarily for any reason, as it's not like recurrence only happens in the first five years. Depending on where you look, it has been said that recurrence is most likely in the first two years after treatment ends, or between 3-5 years after treatment, or if you make it to five years, recurrence is constant from 5-20 years. Of course, the truth is that statistics are just statistics, and they don't apply to individuals. 

I mention this all because my current "3 years of survivorship" put me right into that gray area, which has me alternating between days/periods of "I've made it past the highest risk!" and "I'm entering the period of highest risk." So basically, nothing new! However, today was a rough day. When I scheduled my mastectomy for my mom's birthday in 2015, all I could think about was that I needed to get this thing cut out of me as soon as possible, and whether that was Christmas day or New Year's Eve, or my mom's birthday, I was going to do it. But now that I've lost my mom, January 8th is a really emotional day. On my drive in to work, I actually considered turning around and taking a mental health day. As much as I love Facebook, today's "On This Day" memories were hard. Starting 10 years ago when Mom had just moved here, and all the great memories, which meld into the tougher memories when recurrences happened for her. Then there were posts about my surgery, and I re-read the posts Greg had made while I was in surgery, and all the comments on all the posts from all my friends who were waiting for updates, and I was an emotional wreck!

To be honest, this stretch of time from Thanksgiving through Valentine's Day is just always going to be a tough stretch, I think. Living in Wisconsin during those dark, cold months makes it tough even without cancerversaries. Knowing and expecting it helps somewhat.


That being said, overall, I am doing remarkably well.  

• Lymphedema is well-managed, as I'm basically ignoring it. I mean, I'm not wearing my sleeve anymore, or doing daily lymphatic drainage.  When I feel as though I'm swelling, I'll do some massage, or drainage, but for the most part, I'm just using my arm as much as I can. I still have stiffness in my right arm and chest, and I've switched from the OT at Columbia-St. Mary's to the PT who is the co-creator of Team Phoenix. On my first appointment, she suggested that some of my pain could be my shoulder and not the lymphedema or scar tissue. Sure enough--it's my rotator cuff. Still cancer treatment-related, but something different to work on. I have exercises and I go to get abuse-massages every two weeks. And my range of motion is awesome and the pain is way better.
• The trigger thumb is still under control (although it's locked up a few times in the last few weeks...hope I haven't jinxed myself)
• Although I'm not exercising as much as I was during triathlon training, I'm keeping up with at least some cardio, some weight-bearing, and lots of stretching. It appears to be "good enough" as my weight is maintaining and the joint pain has not come back.
• I did get results from the neuropsych eval. Basically, I'm not stupid--I'm just distracted and kind of stressed. So he recommended two books: one on improving memory and one on mindfulness. I immediately bought both of them, but haven't made it past Chapter Two in either. 
• My routine check-ups with Dr. Shah have made it to 6 month spacing! (This is an awesome milestone.)

And I've generally had more time to do things--fun things! I'm biking (even in the winter, though not as much as I'd like), and knitting, and spending time with my family. Having all three kids around so much during the holidays was extra nice.

A lot has happened in the last three years, but each year gets easier, and I hope 2018 is no exception.