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. 

National Metastatic Breast Cancer Awareness Day

Today, October 13, is National Metastatic Breast Cancer Awareness Day.

I don't do "pink." Many of my breast cancer warrior sisters find comfort in the many pink things that you can find in October. And that's okay!  That's good (for them). I just don't feel anything but uncomfortable about all the pink stuff.

But one day in October is devoted to my metastatic sisters. And that I will recognize.

"Breast cancer" doesn't kill. Metastatic breast cancer kills. There is no cure for MBC. And there is ridiculously low financial investment in MBC research. 

MBC is when the breast cancer appears somewhere outside of the breast. The most common places are bones, brain, liver and lungs. MBC is Stage IV. As I once read, there is no Stage V. There are treatments for MBC, but there are no cures. 5-year survival rates for MBC are 22% (Stage 1 is currently over 99%)

Between 20 and 30% of those initially diagnosed with early stage breast cancer will develop metastatic disease--which can occur 2, 5, 10, 15 or more years after original diagnosis.  In addition, 8% of breast cancer patients are initially diagnosed metastatic.

There are some characteristics that make breast cancer more likely to metastasize, but (as with an original diagnosis), most of it is just bad luck. No matter how hard a woman "fights," she may still get MBC.

An amazing, inspiring, smart friend of mine (who has "fought" harder than anyone I know--see? doesn't correlate) has MBC. Her story is told through her blog: Left Boob Gone Rogue. I know others, as the breast cancer sisterhood is definitely a big one. Their stories are sometimes hard to read, but they deserve to be heard. I encourage you to do so. 

Before my diagnosis, I didn't know the difference between "breast cancer" and "MBC." It is my hope that anyone reading my blog will now understand the difference. 

And if you want to donate to a breast cancer cause, may I suggest Metavivor? 100% of the money donated goes directly to grants for MBC research.

Triathlete

For those of you who follow me on Facebook, you're probably sick and tired of reading all my posts about Team Phoenix. But bear with me while I try to write it all in one post (and I promise to at least minimize the TP posts on FB--if not completely stop them!).

A few years before I was diagnosed with cancer, I had gotten fed up with my physical appearance and my (lack of) physical skills. I'd heard about the Couch to 5K (C25K) program, and so I signed up for the Panther Prowl (UWM's scholarship-funding 5K) as a runner, downloaded the C25K app, and got to it. Although I didn't LOVE running (ok, jogging--I will never be a fast runner), I was amazed at the improvements in my ability to keep running.  When I had started, I was gasping at the end of the 60 second run time, and could barely get out of bed the next morning because my legs hurt too much. In those 8 weeks, I dropped weight, I liked how I could burn so many calories in only a half hour workout, and I didn't need any extra (expensive) equipment. I didn't love it, but I kept it up and kept losing weight (gradually) and building muscle.

And so it was that I was in the best shape of my life, and my lowest weight since high school, when I got my diagnosis.

December, 2014

I was determined to stay fit through treatment and I had some good days. But little by little, I gave it up. Surgery had restrictions on movement, complicated by my low platelets. Chemo exhausted me to the point where I could barely walk, let alone run. Radiation caused burns and pain that made it impossible to swing my arms at my sides. And hormone blocking meds hurt my joints so much that I couldn't pick my feet high enough off the ground to feel safe and assure I wouldn't trip. All my treatment plunged me into menopause and along with feeling crappy (hot flashes-who wants to exercise through that?), I put on almost 40 pounds. Post-treatment I was alive, and I was grateful for that, but I wasn't really living. I pushed through to walk (about all I could manage), and I talked about joining a health club, but certainly never went further than talk. I hated the way I looked in the mirror, and I tried not to be angry about how I felt due to all my treatment side effects. But it was hard. And every night I'd lie in bed and just moan, "I hurt, I hurt, I hurt."

~~~~~


I had heard about the Team Phoenix program marginally. Some local Facebook friends had posted about it, and I thought it was a neat idea--cancer survivor to triathlete! I'd considered joining last year, but a part of me was relieved when I realized that my reconstruction surgery interfered with the training and I wasn't eligible. This year, I saw that the culminating triathlon was the weekend of my 30th class reunion, and I almost didn't sign up for it again. And then I had my 3 month appointment with my oncologist, where I explained that I could barely get out of my chair at the end of the day and she told me, before I gave up and tried switching to the fourth hormone blocker, to give exercise a try. I told her I WAS exercising, but she said that walking wasn't enough. I needed to do cardio and I needed to do it 5 times a week. That seemed impossible and I knew I needed some sort of accountability. And then a friend who had done TP two years ago told me I *had* to do it. So I signed up.

Team Phoenix has a really crappy admission ticket, but there are so many unexpected gifts once you're in.

Yes, I completed a triathlon. I am a triathlete. That's pretty awesome. Someone said to set three goals before the tri--
1. One you're pretty sure you're going to achieve (I wanted to finish).
2. One that is a bit of a reach, but obtainable (I wanted to run the full 5K w/o walking).
3. One that is a stretch (I wanted to do it all under 2 hours).

I made all three goals.

And it wasn't even all that difficult (other than the swim...). Unlike the 5K races I'd done before, there was never a time when I felt like I couldn't do it. 

The adrenaline rush from that morning carried me from a 3:00 am wake-up time to a 9:00 pm bedtime that day. It carried me through sore muscles that afternoon and the next day. It carried me to the JCC (our local fitness center) to join it the day after. And it still makes me smile (and sometimes cry) to remember events on that day.

~~~~~
Team Phoenix kicked my butt into shape and made me stronger than I ever remember being. But it's not just about the exercise. It taught me smart nutrition. I learned how to be a smart and good bicyclist ("biker back," "passing on left"). I learned the importance of being well hydrated. I learned bicycle maintenance (ABC's; how to change a tire). I learned that expensive shoes (when fitted to you) really are worth it. And I re-learned the importance of having your tribe get you through the tough stuff. My tribe was led by my friend Dawn, who I first met through the ABCD mentor training. We ride-shared to most practices, but we shared so much more on those trips, and practices both with and without the whole group.

Dawn & me

My TP sister Wendy shared this quote:

And it explains--much better than anything I can say--the full Team Phoenix experience. The women that I took this journey with are amazing. We are all very different in all but one way--being cancer veterans. But going through this training, with that shared background, has bonded us in a very unique way. The closest thing I can compare it to would be my La Leche League group from when my kids were little. Similarly, we had very different backgrounds and experiences--but we were all breastfeeding our little kids. And for that time of my life, La Leche League was my rock!

Half the fun of TP practices was coming home to see the photographs that other teammates and especially our volunteer team photographer (husband of a TP alum) took. I re-lived each practice viewing those photos (and so I'm sharing a bunch with you).

Throughout the 14 weeks of training, the running whipped me into shape, but I'd run 5K's before. 

Mere meters from the end of a full 5K run

The biking was a lot of fun, although it, too, pushed me (especially those hills). 

My favorite place to be: on Fawkes, my bike

But the swim was really difficult. I started training thinking I'd be able to swim with a little bit of practice. I'd taken lessons as an undergrad, and I figured all I needed was access to a pool and I'd be fine. I did okay in the pool (not great), and I gradually worked up to being able to swim twice as far as I'd need to do on race day.

Me in a pool. Not in love with it, but it was do-able. I swam ALL THE STROKES!

And then we took it to a lake. Growing up where I did, I had no fear of lake swimming (although, as a kid, we didn't "swim" so much as splash and ride floaties). Imagine my complete surprise, then, when on the first day we had practice in a lake, I had a mini panic attack. 

Me, in the lake, being talked down by one of my swim angels

I still can't explain why, but after the first open lake swim, even swimming in a pool became difficult. I was panicky whenever my face went in the water, so I gave up breast stroke and freestyle, and practiced side stroke. I was actually more comfortable doing backstroke, but went all over the place when I couldn't see where I was going, so sidestroke seemed a logical choice.

Then we had our full race distance practice on open water. I'd not been back in open water since my first panicky experience, but again I was sure I'd be okay. I'd become a MUCH stronger swimmer, and I could sidestroke, so wouldn't have to worry about my face in the water. I'd been repeating the mantra that I was a strong swimmer, and I had envisioned myself finishing the swim and feeling triumphant. I had a swim angel by my side again (different one), and I set out.

It was awful. At one point someone passed me and I got water over my face, which entered my nose and I thought I was drowning. That happened two more times. I was scared the entire time, and I kept repeating in my head, "I can't do this. I will have to give up my training because I cannot swim without feeling like I'm dying." Finally my swim angel told me we were almost done, and I reached for the bottom of the lake. I couldn't touch, which threw me into another panic, and I barely made it to shore. I don't even remember getting out of the water. I know I was choking back tears--of both frustration and embarrassment.

And then I got home, shaken, and saw this photo. This is me, coming in near the end of the group, to the noodle rainbow. Teammates cheering and patting me on my back, and raising my arm in victory and smiling. I saw none of it at the time, but I saw this when I came home. And I knew I had to do it. Would do it. COULD do it.

Me, after a near-death experience, surrounded by my TP sisters

I talked to my coaches. Got some pointers (apparently you're not supposed to breathe in through your nose at all when you're swimming), and realized I would need a swim angel for the actual race, and that meant I could do backstroke, as my angel would let me know if I was going off course. I practiced and practiced at the pool, and I watched YouTube videos on perfecting the backstroke. And I made it. There *was* a particularly unpleasant point at the end of the swim during the Tri where the Olympic heat swimmers passed me on one side, sending waves and splashes over my head, while the lily pads attacked from the other side, and it was really, really bad--so bad that I may never swim in open water again--but I still never thought I couldn't. (Thank you to my dear race swim angel for getting me through that!)
~~~~~Finally, though I haven't gushed about them on Facebook, my whole family was amazing and supportive. First of all, they all got up at the crack of dawn (even before coffee shops open) to drive an hour and be at the Tri by 6:00 am, and make awesome posters, and share amazing Facebook posts and Snapchat stories the day of the Tri. 

Cara's Facebook post. I'm told Mira snap-chatted it, but I'm not on snap chat, so have no way to verify that.

Greg, hugging me after placing my medal around my neck at the finish line

Each TP team member got one free purple supporter t-shirt, and could buy additional ones for other supporters. I asked my family if they each wanted one, or if just my "number one supporter" should get one. They decided it should be a competition to see who was proclaimed number one. Lots of events were proposed, but in the end it should be no surprise that they all are my number one supporters. And it wasn't just a one day event. They adjusted their schedules for the 14 weeks of trainings. They took on cooking and cleaning so I could drive up to an hour to practices, work out for 90 minutes, and drive an hour home. They ran and biked with me on my non-team practices. They put up with my endless stories about what I learned at practice that week ("Drop your heels on the bike to go up a hill!" "Carbs are good!" "Turn off your brain, turn on your breath," "Coach Lauren says..."), and so many stories about my new friends.

The whole family, in their supporter tees

I love you guys more than words can say. 

~~~~~

Finally, it should be said that all the wonderful corporate sponsors, and prior benefactors made this program possible for me. Every year it grows, and therefore costs more. If you are so inclined, I do have a fund-raising page (completely optional, but I only raise money for causes I truly believe in), and you may make a donation at my personal page.

~~~~~

One of the things I'm most excited about is becoming an orange shirter! Athletes wear purple TP shirts; coaches wear blue ones; medical staff wear red ones. But previous year alums can volunteer at practices in the future--and they get to wear the orange shirts. I've made so many more new friends who are previous year athletes. And I look forward to wearing an orange shirt next year.

~~~~~
Other photos:


We had professional shots taken in our jerseys where we got to wear makeup and do our hair. These three are mine.

Here's the Team Phoenix 2017 athletes:

And here's the whole group of 2017 athletes and supporters on the day of the triathlon. The photo had to be taken with a drone to fit us all. :)

(And if you've read this far, just so you know--5 days of cardio exercise a week really DOES help with the pain associated with cancer treatment side effects. My joint pain is essentially gone. My neuropathy in my feet is seriously minimized. And I do have more energy--and strength. All that's left now is the weight loss. I have high hopes. And Team Phoenix sisters to support and remind me about the importance of keeping it up!)

Like a Phoenix

Since the last time I posted, I have another one to check off the list: I had my last appointment with the plastic surgeon on April 10th.  That is, unless I decide I want to have him do more liposuction to improve the shape of my breasts (nothankyouverymuch!). Overall everything looks good--Dr. Sterkin is very pleased with the final results.  I told him I was still having pain (feels like bruising) on the right side, but he said that could be all the nerves, which were triggered by the fat transplant. (Sure would have been nice to know that beforehand!) He also said I should not have had the OT do the deep tissue massage in that area, as the type of implants I have (textured) and the way he put them in (sewn to my ribs) could be damaged by massage in that area. It might even be causing lymphedema in my torso! So I stopped the massage, and it actually seems to be getting somewhat better. Less bruised, at least, though still some pain.

I then showed him how I reacted to the dye in the tattoo on my ankle and he said that my reaction, in combination with my low platelets and how thin the skin on my irradiated side is, would make him recommend that I do *not* get my breasts tattooed--at least nothing as major as I'd hoped.  If I wait another year or so, I could try to get nipples (or 3D nipples) tattooed, but probably nothing more major than that. I really saw no reason to get nipple tattoos (not like they'd be functional or something I'd want to show off like a cool design) until I started going to the gym and pool. I guess it would be nice to feel a bit less awkward when changing in public.  I don't know--I'll see what happens in a year.

This week I had my 3 1/2 month follow-up with Dr. Shah. Overall everything seems good.  Bloodwork is all normal except platelets (holding steady at 85K).  She was happy to hear that exercise seems to be helping with the joint pain.  (To be honest, I'm happy and surprised about that, too!) 

I did decide to drop out of the clinical trial I had been doing. I'm feeling some guilt about that.  However, the combination of the effort to get 10 tubes of blood from me at two different times within a week, plus my not wanting to be knocked on my butt for 3 days following the injections (severely impact my triathlon training), and knowing I'm a control and have made it through the majority of the clinical trial (thank you, Biostats, for teaching me about Kaplan-Meier curves so I understand my participation is not completely lost, even after dropping out), helps.

My trigger thumb (side-effect of Femara) seems to be getting worse and is causing me pain, so Dr. Shah recommended getting a cortisone shot. Still need to schedule that--thinking I'll check with the orthopedic doctor my mom used for both her knee replacements and carpal tunnel syndrome surgeries (Dr. Rory Wright). Add another doctor to the mix!

The experiment to wean off the compression garments is having mixed results.  I think it was going well when I wasn't wearing them most days (unless I felt my finger swelling).  But then gardening season started and every time I'd garden, I'd get swollen, so I wore them more for that.  And many doctors and therapists say you have to wear them while exercising. I actually notice more swelling AFTER exercising, and it seems I am always either exercising or it's the day after exercising, so I'm wearing them a lot more again. I did get two new sets, and realized how stretched out the older sets had gotten. I also read a post on how alcohol is bad for lymphedema.  Not that I drink a lot, but that plus the recent article about one drink a day increasing breast cancer recurrence kinda sucks! Nothing like a little guilt about my one drink a month.

Another relatively new side effect I've developed is restless legs--anytime I'm still for awhile, but especially when I'm trying to fall asleep.  Dr. Shah recommended trying a calcium supplement, so I'll give that a shot.

The biggest issue I talked about with Dr. Shah was my brain fogginess. Of all the side-effects I'm having from treatment, it's by far the one that is bothering me the most. The worst part is that I feel like it's getting worse, and not better. I'd chalked it up to chemo-brain, which is supposed to improve following that first year after treatment ends. I find myself really struggling with names and with words in general (I can give you a long description of the word I'm looking for, but can't come up with the word). And recently there's been a LOT of people saying, "remember when..." and I honestly canNOT remember what they ask about. It's annoying and a little scary. Dr. Shah asked about brain exercises/games and I told her I do 7 Little Words every morning and have recently returned to playing Words With Friends (thank you to those who play with me!). She said that was good, but I should add math games--like Sudoku.  I don't like Sudoku, so Greg suggested KenKen, which is kind of fun, but I wish there was a social math game like WWF.  Anyone know of one? The other thing that Dr. Shah recommended was a visit to a Neuropsychologist to determine if my brain fogginess is really chemobrain, or something else. This made so much sense, as I had just read a couple interesting articles that supported the idea of it NOT being chemobrain. My friend Dawn posted an article about breast cancer survivors developing a form of PTSD--usually about a year after treatment ends. And then I found another article about how brain fog after breast cancer treatment might be caused by PTSD and not chemo. So I agreed to a four hour evaluation appointment with a neuropsych next month. On the one hand, the last thing I need is one more appointment, but I am determined to do whatever it takes to maintain as much quality of life as I can. So I'll do it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And finally, the biggest change in my life lately--and the inspiration for the title of this post: Team Phoenix.

I am now 6 weeks into the 14 week training of Team Phoenix.  I will complete my first (sprint) triathlon on July 30, 2017, and any of you are welcome to come meet me at the finish line. It starts with a 1/4 mile swim in open water, then a 15K bike ride, and finally a 5K run (or walk).  I have already ridden 15+ miles on my donated Trek bike; I have done 5K's before and am C25King my way back to that, and I am desperately trying to learn to swim in a more effective manner than I have all my life so I can do that part. 

The exercise plan has resulted in some more muscle aches, but it has done amazing things for my joint aches and flexibility.  I feel STRONG!

Still, the best part of Team Phoenix is that I'm doing this with 56 other female cancer survivors (most breast, but not all). Some of us started w/o knowing how to swim, or not having even ridden a bike for years. Some started as previous triathletes. But we're doing it together, with the most amazing team of coaches possible--including Team Phoenix alums. I cannot put into words what a powerful experience this is, and if you are a cancer survivor in the Milwaukee area, you need to do this next year!

The support for Team Phoenix is amazing and I want to give appreciation to the organizations that donate.

*Wheel & Sprocket loans us brand new Trek hybrid bikes (which we can buy at a discount after the triathlon); I've named mine Fawkes

*Land's End gave us each a swimsuit (the one I got FITS ME as it's a tall one)

*One Step gives us a discount on custom-fit running shoes (I can't believe how much difference it makes to own "good" running shoes that correct for my inward-turned knees)

*The JCC gives us a free membership the duration of training (so I can practice swim, but also could use the treadmills and stationary bikes on rainy days)

We travel all over SE Wisconsin for practice twice a week and to see trails and parks that I didn't know existed. 

It is tiring and very time-consuming, but I'm dragging family into practice with me so I get to see them. If anyone wants to bike or run with me--or help me figure out swimming--let me know.  I'm determined to do this, and to set myself on a path to continue with at least some of the activities. There's a pretty active TP Alum biking group!

And so I am, slowly, rising (like a Phoenix) back to my old self--or maybe, in some ways, a better self. All I have to do is flip back through my blog entries to see how far I've come. Thank you all for supporting me.

Mentorship and healing

I said I'd write a post this week, though I don't have an awful lot to share.  Still, the legacy of chemo-brain is with me, and so I'll write if for no other reason than to refresh my own memory when I try to remember how things were in six months.  

I had my 3 month check this week.  And the good news is that I can start spreading out my check-ups now.  That means my next one will be in 4 months.  Or at least it would be in 4 months if I weren't doing the clinical trial.  Since it takes place every 6 months, I'd have to come in in 3 months for it, and then a month later for my regular check...  So we're going to split the difference and I'll go in in 3 1/2 months.  I'm hoping after that I can push it to 5 1/2 months so I can do both at once again.  Let's see how that works!

The worst part of this visit was the blood draw.  I really miss my port!  As those of you who read Facebook know, this draw did NOT go well.  I know I'm a kinda tough stick, but this was ridiculous.  I have three holes in my arm, but each of them involved multiple in and out, back and forth, up and downs.  I am ridiculously bruised--especially on my wrist!  Who ever heard of taking blood from your wrist?  

That's two days after the appointment. And on the wrist where I wear my FitBit!  Grumble, grumble, grumble.

Other than the blood draw, I had a very good appointment.  

My platelets are stable at 84K.  All other CBC measures were normal--which is unusual for me! My hemoglobin level is in the normal range, so I can stop iron supplements for the first time in over 2 years.  

We talked a lot about Femara and the pains it's causing me.  I'd read up a lot about a study done in the mid 2000's called BIG 1-98, which compared 5 years of tamoxifen to 5 years of Femara.  In addition to a general "Femara is more effective" result, when it's broken out into several groups that I fall into, the results are even better.  For example, women with invasive lobular carcinoma (which I had--much more rare) had even greater effect on Femara than women with invasive ductal carcinoma (the most common invasive BC).  There was also concern that switching young women from tamoxifen (used in pre-menopausal women) to Femara might not be effective since sometimes they were thrown into menopause unnaturally by treatment.  But that is not the case--it's even marginally more effective in "younger" (defined as under-55) women.  So I am convinced that this is the med for me, and I need to learn to manage the side effects.  Dr. Shah says that (at least at this point) research shows there's not sufficient benefit to be on Femara longer than 5 years, so I will be on it for 5 years (as opposed to 10--although I'm sure research can always change that).  I can do this for 5 years!  The side effects that I'm dealing with are mainly three things: joint/bone pain, tiredness/exhaustion, and trigger thumb.

Trigger thumb is annoying--especially first thing in the morning.  If it gets really bad, I can get a cortisone shot, but for now it's doing okay with me just massaging and stretching it.  Luckily it's on my non-dominant (and non-affected) side. I'm considering trying a brace for nighttime, as keeping it straight overnight is supposed to help.  It's worst in the morning--painful as well as annoying.

Dr. Shah isn't convinced that my level of exhaustion is due to the Femara.  She wants me to have my thyroid levels tested (again--had them done about 5 years ago).  More doctor appointments...  But Dr. Shah also said using caffeine is fine.  So I've upped my coffee consumption and just can't do late nights (and by late nights, I mean out after 9:00 pm) or early mornings.

The biggie is the joint pain.  I'm having the worst pain in my right knee, which I know has osteoarthritis.  But the rest of me hurts, too--my back, hips and legs, especially.  I have permission to take Advil and Tylenol if needed, but Dr. Shah says I really need to exercise--and that doesn't mean walking.  She said at least 5 days a week of cardio for 30 minutes.  She promises it will help, but I hate cardio. Still, I can't keep up with this level of pain, and I don't want to stop the Femara, so I'm trying.  I re-started C25K on Wednesday night, was really sore Thursday morning, did 30 minutes of the elliptical Thursday night, and can barely walk this morning.  <sigh> I am, however, going to an informational meeting next week about Team Phoenix--a triathlon training program for breast cancer survivors.  I've heard fantastic things about it, and I hope that belonging to a group like that will make me work at a level I need. Besides that, they have PT's and athletic trainers who have experience with cancer patients and I think that will be super helpful.

The other good thing from my appointment is that I have permission to try to go w/o my compression garments and to "cautiously observe" my hand and arm for lymphedema.  One of the odd side effects of wearing a sleeve is that I wasn't using my right hand/arm (for fear of getting my glove dirty and/or not having grip on that side) and my strength has really gotten poor.  So hopefully now I'll use my right arm more.  It feels very strange!  I'm still wearing the nighttime garment and will for a couple weeks at least to make sure that the lymphedema doesn't return.  If it's okay, I'll try to stop the night one, too.  I'll still always have to wear them for high risk activities (like flying), but it would really be nice to not have to wear one in the summer heat.

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Finally, the other thing that I've been doing cancer-related is mentoring.  

When first diagnosed, I didn't want to tell local people until I knew "everything," including my treatment plan.  But I needed someone to help me figure out what was happening next and what the tests meant and what options existed.  I had an online friend who was my go-to and I couldn't have made it without her guidance and no-nonsense advice.  Since that diagnosis, I've been able to share advice with other long-distance friends.  Though I wish it weren't the case, I'm so glad to be able to pay it forward.

When I let the kids' teachers know about my diagnosis, one of them told me about ABCD (After Breast Cancer Diagnosis), as her mother was a mentor.  I reached out and was paired with two mentors who were wonderful.  I contacted them a lot until word got out locally and I switched much of my dependency to locals. I was trained to be an ABCD Mentor in November and was able to connect with my first mentees this month.  The training was emotional (re-living everything) and yet very good.  I was a bit afraid that mentoring would do the same again.  And to an extent, it did.  But overall it is a really Good Thing.  I am able to think about what I've been through differently, this far out.  And I can say, without a doubt, that treatment sucks, but it's doable. It's awful, and scary, and emotional and really scary and totally doable.

As I said, when word got out, I was surrounded with support from local survivors/veterans.  I connected with women who I'd known, but not shared much more than a passing hello with for years.  (Once you're in "the club," you understand.)  One of these breast cancer veterans and I met for coffee last month, and found out that an employee at the coffee shop is currently going through chemo for breast cancer.  We decided to do a monthly "Cancer Coffee" (we're open to a friendlier name suggestion :)) and if you're a BC veteran and live in the area and want to join us, email or message me and I'll send you details. 

The new friends I've made (and friendships I've strengthened) are yet another silver lining.  I'll take it!

Two years

Facebook reminded me that it's been two years since I started this blog (with this post), but I've been keenly aware of all the two-year "anniversaries" in the last 5 weeks.  It started on Thanksgiving day, which was the two year mark since I first found the lump.  It brought me back to those stressful weeks not knowing, and then, knowing, but not saying anything about it, and not *doing* anything (i.e.: surgery, chemo, etc.).  I remembered all the feels of seeing my primary care doctor, sneakily having my friend Everett cover my classes so I could get the diagnostic mammogram and then the biopsy done (and letting him think that I needed the time for my Mom's medical issues).  I remembered reading and getting more and more scared as I learned the characteristics of my cancer (HR+, HER-2+) and the side effects of the probable treatments.  I remembered worrying how I'd start a new job in the midst of treatment and how I'd get through graduation and Christmas, knowing I had a cancerous tumor inside of me and that I wasn't doing anything about it.  Each memory brought a little more anxiety and I worried about what D-day (diagnosis day--when I actually heard the words "you have cancer") would bring.  And then, to my amazement, it was December 6th and I had completely missed December 5th--D-day.  And I think that, in many ways, that represents the way my whole cancer journey has gone--fear about things that ended up not being that bad.  

Sure, when you look at the whole picture, this really sucks.  Getting cancer at age 44; having ALL THE TREATMENTS with their associated side-effects that I'm still managing, and always will be; all the time and the money spent on trips to medical appointments (I'm up to 171 appointments; no impact on my day-to-day there!); the ever-present fear of recurrence or metastasis...  But on the whole, I handled treatments well, and so far, treatments are working (fingers crossed ;)).

I haven't blogged for three months, and in some ways a lot of medical stuff happened in that time, but in other ways, not much happened at all.

I've continued with my clinical trial, and my suspicion was confirmed.  All along, I've felt that I was in the control group.  Basically, the immunological tests were all showing no response, so I knew that either I had the control or it wasn't working.  This time, after giving the booster, the oncology nurse left behind the bag that the injections were stored in.  It clearly read "Neuvax-CTRL."  So while I "knew" I was getting the control, I didn't really *know* it until last month.  And I still have to go in twice every 6 months to give 8 vials of blood.  It's a little harder to do that, but I know that control groups are also important in clinical research, so I'll do it.

The scariest thing that happened was in late October.  After my final reconstruction, I had to be very careful to not move my implants, so I really didn't touch my new "breasts" for a long time.  But I was having lots of stiffness on my radiated side and I feared that the scars were sticking, so I got permission to begin some gentle massage on the scars.  It was then that I found a lump in the exact same spot that my original main tumor was located (10:00 on my right breast).  I told myself that it was likely lumpiness from the surgery--I even called my oncologist's office, who said it was probably post-surgical changes.  Because they didn't know what my breasts felt like prior to surgery, they wouldn't examine me to be sure that's what it was, though.  I had to see my plastic surgeon--who couldn't get me in for weeks.  Finally, after several appointments and "it's probably nothing" comments, I ended up with an ultrasound that proved that it was, in fact, just necrotic fat that did not vascularize when Dr. Sterkin did the liposuction and injected fat over the implants.  Who would have thought that the phrase "dead fat" would bring such joy?  

I've been faithfully wearing my lymphedema sleeves and gloves day and night, and the lymphedema has not gotten worse.  Unfortunately, it hasn't gotten better, either.  In addition, I was somewhat babying my right side and lost a lot of strength in that arm, and also had a lot of tightness post-surgery, so got referred back to Audrey, the OT.  I'm getting stronger, and have a ton of exercises for strength and stretching, and have been discharged from OT again (after 2 months).  But Audrey has said that I'll likely need to wear a sleeve the rest of my life since the swelling hasn't gone down in 5 months.  

The actual sleeves are a bit more attractive than the makeshift one I originally had.

However, I might have to invest in one of the cool sleeves that LympheDIVAs sell.  Greg thinks I should get the cyborg one:

All in all, things are good.  I'm still vaguely annoyed with how tired I am--though at  least some of that may be due to age!  And while the Femara is not as bad as either Arimidex or Tamoxifen, I do still have joint aches.  I also had a bone scan, which showed no signs of osteoporosis, but some pretty bad arthritis in my right knee.  I've pretty much given up on running, but am trying to walk (at least 10,000 steps per my FitBit) every day.  I'm considering doing some sort of a gym thing--which came to mind when I realized how weak I'd gotten.  Considering yoga, too, although I'm not a huge fan of it yet. Open to suggestions of fun ways to stay fit!

Finally, we had an absolutely magical Christmas.  All five of us spent five days in Puerto Morelos, Mexico.  The sun, green things, warmth (magic for my arthritis!), and family time was perfect.  One of the coolest things was doing yoga in a pagoda in the ocean.  If I could do yoga that way all the time, it would definitely be my exercise of choice!  I mean look:

The trip was one of the many Good Things that cancer brought.  Pre-cancer, there is no way I could have justified spending that much money on a vacation.  And we would have missed out on those five amazing days.  The memories made on our trip far exceed any joy that would have come out of making an extra mortgage payment ;).  

So on this New Year's Day, 2017, I resolve to say "yes" more often, and to make fun a priority.  I would ask all of you to do the same.  Don't wait until it's forced on you.  And if you have something particularly fun in mind, feel free to ask me to join you.  I'll try my best to say yes.