Explanting

As I'd written about earlier, I decided to get a second opinion on potentially taking out my implants. One of my biggest regrets with all of my treatment was the fact that I did not get any second opinions. It wasn’t necessarily mandatory, as I decided early on that I trusted my care team, and needed to spend my energy getting through treatment and all other things. But was a very strange approach for me to take, as I’d done just the opposite for all of my family members’ illnesses—reading up on everything I possibly could. I have since come to realize that it was a necessary self-protection at that time. I don’t really regret any of the treatment that I got, and I don’t think that my care was harmful in any way. But given that I have had such issues with my implants since the beginning, I can say (with 20-20 hindsight) that I wish I’d have gotten a second opinion on plastic surgery. Most of all, I wish I had known that it was possible to reconstruct later and that I didn’t have to rush to work with a plastic surgeon from the start. 

After seeking referrals from several others who had been through different types of breast reconstruction, I decided to see Dr. Kinney, although reviews were also mixed on him.

I am so glad that I chose him. He spoke to me as an educated person and he listened to what I wanted (or thought I wanted) and explained possibilities. Most of all, he repeated that whatever decision I made now did not have to be a permanent decision. If I decided to go flat, I could come back in a year or two or ten and he would be able to construct breasts from either my inner thighs (bonus!) or my butt. (Since Sterkin had already used my stomach for liposuction, that would be a bit iffier, but potentially also possible.) He explained the method of surgery that his office does for reconstruction which, unlike “older” methods, uses fat and the fat’s blood supply and does not touch any muscle. And that he will use implants if someone wants them, but that fat makes a softer, nicer breast, so he seldom uses implants. He acknowledged that Dr. Sterkin is an excellent implant surgeon, which I would agree with. Finally, he told me that he could take out the entire capsule (en bloc) surrounding the implant and wouldn’t have to leave some behind, like Dr. Sterkin said he would have to do. I told him that Dr. Sterkin was concerned about causing a pneumothorax, and while Kinney acknowledged that it was a possibility, he has a technique to minimize that happening, and even if it did happen, it simply meant that the lungs would have to be re-inflated and I’d have a chest tube until it healed. (Not something I’d enjoy, but if it means the full capsule comes out, it’s a worthwhile risk, I think.) He also said that he would remove the dead fat from my other surgery (to put in the implants) and send it to pathology to ensure that it is, truly, only dead fat. After two and a half years of wondering about that, I consider that a welcome bonus. 

So my explant surgery without reconstruction is scheduled for 11:00 am on Tuesday, June 18. It will (hopefully) be an outpatient surgery. I will (hopefully) be out of work for only a week, and off my bike for two weeks (can ride a stationary bike, but not move my arms). And then I’ll have PT (with the amazing Dr. Leslie Waltke) and hopefully the pain and numbness and shoulder issues will be better. And my favorite “perk,” as told by one of the bike salespeople where I bought my new bike (more on that later) is that by going flat I’ll be more aerodynamic on the bike! If I feel the need to have “breasts” that are about as functional as the fake ones I currently carry, Cara has promised to knit me a pair of knitted knockers. (Actually she thinks I should build a collection, all lovingly hand knit by friends.)

One more thing about breast implants:

I had posted before about the increasing link between textured implants and breast implant associated lymphoma (BIAL). There have been hearings recently, in front of the FDA, asking for removing textured implants from the marketplace. Several other countries have already done so. Basically, the US FDA will not be removing textured implants, but will increase the reporting requirements of adverse effects and increase the notification and warning to women before they get implants. One other thing that came up in the FDA hearings is something called “breast implant illness,” a non-specific autoimmune disorder that has been used to describe such varied symptoms as fatigue, skin disorders, intestinal upset, and almost anything else that you can imagine. I must admit that I have brushed it off, as there are so many disorders without scientific basis that are somewhat a product of suggestion (culture-bound syndromes). And most of the symptoms that have been blamed on BII are symptoms that arise from most breast cancer treatments. But the FDA, while not going so far as to acknowledge that BII exists, did agree to include the possibility of immune dysfunction following use of implants, and added that to one of the things that women should be warned about prior to surgery with implants. And while I’m still not 100% convinced, there does seem to be some anecdotal evidence that women with an existing autoimmune disorder have more symptoms after getting implants. I do have an autoimmune disorder (ITP), and I wouldn’t complain if, by removing these implants, my body aches, fuzzy brain, immense fatigue, and any other symptoms disappear!

Since my last post, I have had another 6 month check with Dr. Shah (still NED!) and another round of Zometa infusion. Dr. Shah is pregnant again with another little girl. What a great measure of time moving along, as I was nearing the end of my active treatment when she was pregnant with her first. I had insurance issues with getting the infusion the same time as my Dr. Shah appointment, so I got two appointments instead of just one. It did give me a chance to try out being poked in my lymphedema arm, however. And the phlebotomist got me with her first poke and I didn’t bruise or anything.

Greg surprised me by showing up at my infusion, since it was at the end of the day. And when I got home, he’d bought flowers. Given how hard the infusion hit me the last two times, I decided to pre-medicate with Advil and Tylenol before and through this infusion. I took a total of seven rounds of 1 Advil + 1 Tylenol, and not only was it much less terrible of a process through the infusion, but that many NSAIDs had me pain-free for the first time in ages. I literally was skipping around! I certainly can’t take that many NSAIDs regularly (besides liver and kidney damage, it’s not good for me to take them with ITP), but if I have something big coming up (like, say, riding a Century…), they could be helpful. J

Which brings me to my other big news—which those of you who read my Facebook already know.  Team Phoenix introduced me to biking, which I love. And I started 2019 with a goal of riding 2019 miles this year. I also want to ride a century (100 miles). Which is possible, but would be more difficult, on a hybrid. So all my biking friends have been telling me that I should get a road bike. While I was going to wait until next year's big birthday, I taught a class at UWM as an adjunct, which gave me some extra money that I wasn't expecting. And so I decided to look at bikes. And somehow, after months of comparing online and in stores, I ended up with an amazing, beautiful, fast road bike, who I call Roz. I feel quite spoiled, but she makes me very happy.

(Photo from Trek website)

Surgery in one month from today. I can do this. :)

Surgery #4(?)

Yesterday I met with Dr. Sterkin--my plastic surgeon. Before I launch into details, I will start by saying that Dr. Sterkin is an amazing surgeon and craftsman. I have (in the last 4+ years) seen a lot of surgically altered breasts, reconstructed breasts and the-chest-that-formerly-held-breasts, and I can say that my reconstruction, done by Dr. Sterkin, looks pretty darn good. So if you have him for a surgeon or are considering using him for a surgeon, you're in good hands. (LOL--maybe not the best phrase for a breast surgeon, but you get the meaning, I hope.)

So a bit of background information before I post about the appointment:

The final stage of my reconstruction was about 2 years and 9 months ago. It involved removing the expanders that had been placed under my pectoral muscles and replacing them with shaped, textured ("gummy bear") implants that look like these:

http://www.clarifyclinic.com.au/wp-content/uploads/Blog_gummybearvtraditional.jpg

Because they are "gummy", they hold their shape better and don't ripple like traditional silicone. They are more anatomically shaped, and they have a texture that prevents slippage, as the body basically attaches to the outside of the implant over time.

Unfortunately, shortly after I had my gummy bear implants put in, research began to hit the media that linked breast implants--but especially textured implants like the gummy bear model--to development of a rare type of cancer--breast implant-associated anaplastic large cell lymphoma (BIA-ALCL). Initially (in 2016) the estimates were about 1 case in 30,000 implants, and few deaths. (It is a highly treatable form of lymphoma.) Over time, as knowledge of the link grew, the estimate gradually increased so that the current estimate could be as high as 1 in 3817 women. Still very low, and still very treatable, but add it to the list of "one more thing cancer gives you to worry about."

This was also the time where I became involved with Team Phoenix, and met a LOT more breast cancer survivors, including many who chose not to reconstruct, but to remain flat. When I was first diagnosed in 2014, there were so many decisions to make, and I don't remember much of my conscious decision of what to do--I just know that everyone I knew who had had breast cancer did reconstruction, and when I met with the plastic surgeon, he confidently told me, "you're young--you'll want to reconstruct" and "there's not enough tissue to reconstruct from your stomach or butt, so you'll need implants" and "you are removing your nipples, so you won't be able to do immediate reconstruction." Whatever the reason, I didn't even consider flat to be an option. But now I had what felt like ticking time bombs in my chest, and I was beating myself up about my vanity putting myself at additional risk. Furthermore, my reconstructed breasts have never felt good. I don't even mean that they never felt like real breasts--they have always been uncomfortable, and the right one (cancer/radiation side) has always been painful. I stretch every day, and keep going back to PT when the pain and tightness on the right side are too much to deal with. Recently I developed rotator cuff issues on the right, likely due to my pain and awkward use of the right side. And it regularly goes numb and itches and is just a constant issue. So I joined a Facebook group called "Flat and Fabulous" and read more about the choice to go flat. And knowing that I was coming up on my 3 year implant-aversary, I knew I had to either get an MRI or decide to explant (opposite of implant). I wasn't sure what to do or in what order, so I called Dr. Sterkin's office and they said I needed to see Dr. Sterkin himself, so I made an appointment. The earliest appointment was 6 weeks out. And that was yesterday.

During the immediate time period before and after my mastectomy, I saw Dr. Sterkin a lot. I had check-ups after surgeries, and appointments to add saline to the expanders, and I was in his office about every two weeks. Trying to avoid taking as much time off of work for the appointments, I usually made them for 4:00 or 4:15, and I quickly learned that he often ran late and I might not get in until after 5:00. I would come to appointments prepared, with knitting or a book, and practiced relaxation techniques, viewing the extra waiting time as a gift to make me slow down, and somewhat a penalty for scheduling the last appointment of the day. Knowing this, I decided to take a morning appointment to avoid that delay for my 3 year follow-up.

I arrived a little after 9:00 am and was almost immediately shown back into a room for my 9:30 appointment (was told to be there at 9:15 for paperwork). I saw the MA and changed into a gown and then I waited. And waited. And waited. An hour later the MA came back in and said Dr. Sterkin would be in shortly. An hour and a half later, Dr. Sterkin finally came in.

And here's where my confusion sets in.

Dr. Sterkin (in his tactful way ;)) explains to me that the odds of my aggressive breast cancer coming back and killing me are volumes higher than the chance of my dying from BIA-ALCL. (Scientist that I am, I actually find this comforting.) But he did listen to my complaints of pain on the right. And after a lot of poking and prodding and discussion, he told me that I have a grade 2 or 3 capsular contracture on the right side, and that removing the implant was the only way to fix it. (I knew this and had suspected it might be a contracture due to the pain, but I didn't realize it had actually distorted the position of that reconstructed breast until Dr. Sterkin helpfully pointed it out.) I was relieved that he was on the same page--at least where I was leaning. I was especially encouraged by his explanation that if the implants below the muscle were removed, I wouldn't have the pain I get after biking a long way (uses the pecs and they tighten and hurt a lot).

But then things shifted. He immediately launched into how to "fix" it, and that involves a capsulectomy (removing the implant with the capsule around it) and then laying the pectoral muscle back against the ribs and putting in a new implant in front of the muscle. I tried several times to stop him and explain that if I were having surgery again, it would be the last time and I'd just go flat, but he didn't let me interrupt.

An hour later, I'd picked out non-gummy bear, rounded, smooth-surface implants to insert pre-pectorally when I swapped the sub-pectoral gummy bears. I'm still not sure how that happened. It involved statements like "I almost never have a woman go flat--only when it's an 80 year old woman with ancient implants and she wouldn't reconstruct at that time." and "You're too young to go flat." and "I'll do whatever you choose, but I won't be able to make it look good." and "I've not done this on an irradiated side, but I think with the fat grafting that it should work." and "There is a risk of infection." I questioned my desire to go flat. Since joining the "Flat & Fabulous" group, I've seen a lot of photos of women going flat, and a lot of reconstructed "breasts." And Dr. Sterkin did a really nice job on me. Even with the capsular contraction, I have pretty natural-looking, even "breasts." And my clothes fit pretty well. And I saw photos of how much better the pre-pectoral implants look (they almost give you cleavage!).

But now I'm away from all that and I'm definitely conflicted. I'm also frustrated that I'm even considering a risky, somewhat experimental surgery for vanity. And I don't know exactly what to do. I *think* I need to see another plastic surgeon and see what they say about going flat. And maybe I need to talk more to people who have gone flat to see if I'm ready for it. Maybe I need referrals if you have a plastic surgeon you like who isn't anti-flat? Most of all, I am scared to have another surgery. I could just stay as I am, have the MRI, and deal with the pain. I know that any surgery will take me away from biking for awhile, and that makes me sad. And then I think about my sisters who have recently been diagnosed with recurrences, metastases, or second primary cancers, and I just want to scream a giant FU to cancer--the gift that keeps on giving.

----------

However, I must say that one of the best things I could do to get my mind off this tonight is attend a gallery opening that my dear friend (and Team Phoenix sister) Wendy created.  It is called "Amazing Strength" and it showcases photos of 39 Team Phoenix sisters. (I happen to be one of the 39.) Wendy is so gifted and the exhibit is so moving. It's only there for a week (until March 17), so I encourage you to visit it in Delafield. Information (and digital images of some of the photos) is on Wendy's website: www.WendyAndrewsPhotography.com under the "Team Phoenix" link. One of the quotes written on the paper hiding the photos until the big reveal was "Cancer is life-changing in a BAD way. Team Phoenix is life-changing in a GOOD way." And that's so true. I can do this--whatever I decide.

p.s. in the photo above, I'm raising my "problem" arm high in the air. I credit cancer physical therapist Dr. Leslie Waltke for giving me the range of motion!

Four years

It’s January 8, 2019. And that means it’s my four year cancerversary. Four years ago today I was first considered “no evidence of disease (NED)” when I had a double mastectomy and axillary lymph node dissection.

I woke up (unintentionally) early today and spent time again re-reading the Facebook posts that Greg shared throughout the day while I was in surgery. And I re-read all the comments and messages that people left for me. And I cried a little. Mostly good, warm, positive tears as I felt the love. But a few PTSD kind of tears, too.

Four years brings a mix of emotions. It’s another year closer to that “5 year survival rate” mark, which seems completely arbitrary, but my father-in-law assures me that actuary tables are set up with a strong basis in reality. So that’s a good thing. On the other hand, I have had multiple BC sisters turn metastatic in their fourth year, so that’s also terrifying. When I was first diagnosed, the fear of leaving my children without a mother was overwhelming. Two days ago my youngest child turned 16. The traditional survival rate after a MBC diagnosis is usually said to be two years. So even if I were diagnosed today, I'd likely live long enough to leave only adult children. (Yes, those thoughts are ever present.)

The other thing about January 8 is that it was my mom’s birthday. (Today would have been her 76th birthday; she died in 2016.) When I scheduled my mastectomy for her birthday, I didn’t think anything about that date—I just wanted this horrible tumor out of my body as soon as possible. I wanted to get things started so it would all be over as soon as possible. (Ha ha!) But since losing my mom, her birthday hits me harder. It brings back that awful time when my mom was struggling with end-stage lung cancer with brain mets and I was a new breast cancer patient and I had to focus my energy on me and shift it from her. It was a really, really icky time, compounded by happening in January and February—the most depressing months. 

So I’ve been kind of in a funk today.

However, I also have a work conference this week in beautiful Stevens Point, WI! Several months ago, when I registered for the conference, I asked my brother if he and Amy could meet us (it’s halfway between us). He wasn’t sure if he could, but due to the federal government shut-down, he was able to do it. (Unfortunately Amy could not.)

It was amazing to see him for the first time in over two years.

And Greg was able to come along, too. Two days with my favorite guy makes everything easier. I'm feeling good, maintaining NED, and being thankful for every single day that I get. 

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!)