Drain free, baby!

With all three of my bigger surgeries, the worst part of recovery has been the surgical drains. This surgery was no different. Up until this morning, I was afraid I might have to keep at least one drain in longer than a week (the left side would not stop producing), but last night's measurements were slightly lower and this morning's even lower. Dr. Kinney obliged. Hooray!

I really thought I'd written about the surgical drains before, but can't find a post. So forgive me if this is a repeat. With each major surgery (bilateral mastectomy, implant placement, explant) I've had Jackson Pratt (JP) surgical drains placed in my chest to remove the build-up of fluid (blood and lymph, mainly) that can impede healing. They look like this:

That flexible end is wound around the area where the surgery was done, and then the clear tube feeds out of the skin, where it's secured by being sewn in and taped, and the grenade-shaped bulb has a cap that can be opened to create or release pressure. Two or three times a day you need to "milk" the tube from where it exits the body to force the fluid down into the bulb. Then pressure is released, the bulb is emptied into a measuring cup, and the volume of fluid is recorded before it's flushed. Finally, the bulb gets compressed, the cap is closed, the bulb is secured to clothing (or a lanyard) and the negative pressure continues to suck out that excess fluid.

I didn't feel the tube inside of me--except when it was being pulled out (squick...). But the stitches and adhesive where it exits the skin alternate between pinchy and itchy--especially as my body was healing and the wound started to dry up. In addition, my drains all ran out the side of my body, so they were near the ribs and would prevent me from turning on my side in bed or otherwise. Mostly they just impede movement in general, and that is why it's so amazing to have them pulled! Now I just have gauze taped over the wounds to absorb any extra leakage. Hopefully they'll heal up in a day or two.

In addition to removing the drains, Dr. Kinney said nothing bad showed up in pathology (YAY!), and he showed me photos of the full capsules and intact implants that he removed. (If anyone wants to see the photos, I'm happy to share, but don't think I should put them up on a public blog in case people are grossed out by that kind of stuff.) The capsule (which is the scar tissue that forms around an implant) on my right (cancerous) side was a mess. The alloderm (cadaver tissue) that Dr. Sterkin used to make a big enough pocket to hold my implant on that side, since it had radiation, and the grafted fat did not take as they should, which is likely what led to the capsular contracture and extreme pain on that side. Seeing the mess of dead fat and alloderm taken out on that side made it pretty obvious why my chest is not flat but concave. It's essentially skin and scar tissue on top of muscle. Dr. Kinney also verified that the implants pressed in on my ribcage and that is responsible for the concavity and is not reparable (unless I did a flap surgery in the future). If I only knew then what I knew now...

In the week since surgery, I think the concavity has lessened somewhat. Either that or I have just gotten used to it. I'm able to start doing some gentle stretching to keep my shoulders loose, and in a few weeks I'll return to PT to see what I can do about releasing some of that scar tissue. I continue to be able to take big, deep breaths, which I didn't know I'd missed until I was able to do it again.

Finally, I asked about when I could return to biking. Dr. Kinney said that the biggest risk to me post-surgery is too much motion of my arms and chest area, which would increase fluid build-up and possibly require manual drainage. But biking doesn't use much arm motion (unless you're mountain biking, which I will refrain from for at least a little while), so he said I could bike whenever as long as I watched for any fluid build-up. Guess what I'm doing tonight... :)

After my appointment, Greg and I went to Bel Air for Taco Tuesdays. Tomorrow I return to work. I'm so glad I asked around for second opinions on surgery, and went ahead with the implant removal. It's not perfect, but I have confidence that it will be much better. And I'm pretty excited to only miss a week of biking. I don't think I'll be riding with the fast group for a few weeks, but I'm excited to get back on my bikes.

Thank you to friends who brought me delicious protein-heavy snacks, sent me beautiful flowers, kept me company on walks or chats, and who checked up on me by texting or messaging. You've helped heal my body as well as my mind. Now there's nothing holding me back. Onward and upward!

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Explant done! And hopefully my last breast-related surgery.

When I first started researching implant removal, I joined a Facebook group called "Flat & Fabulous." Unfortunately I look neither flat nor fabulous right now. I look like someone took a giant melon baller to my chest and left me with a double bowl for serving dip.

About that uneven, too

I'm a little embarrassed to say that I teared up when I first saw how I looked. I'm not sure what I expected, but I guess I was hoping for some miraculous outcome. Unfortunately my previous surgeries resulted in scar tissue and skin sticking to the muscle, and (I think) 4 1/2 years of having expanders and implants pushing on my ribs may have also pushed them in. My mom used to tease my dad about having a "chicken chest" because his sternum stuck out so far. I guess I'm more like my dad than I thought.

But it's done, and I'm happy--I really am. If you read online about "breast implant illness," you'll read all sorts of testimonials from women whose symptoms of every sort of malady all disappeared the minute their implants were removed. As Greg, Cara and I were waiting for me to be wheeled into surgery, we started making a list of all the things that would result from having my implants removed.
1. No more feeling that I had a stack of books on my chest
2. No more extreme tightness in my shoulders
3. A disappearance of the bruised feeling from my neck to my belly button and down my arm
4. Ability to run again as I'd no longer have joint aches
5. Feeling that I was smart again as the brain fog lifted
6. Shiny, thick and lustrous hair
7. Perfect vision with no need for glasses
8. Promotion at work
9. Winning the lottery
etc...

The first one came true, so I'm just waiting for the others.

Waiting for surgery; using the "Bair Hugger" to amuse Cara

About the surgery:
Unlike my first surgery (7 hours) or my third surgery (4 1/2 hours), this one was only two hours long. In addition, I learned what worked and didn't work from my previous surgeries. And the anesthesiology team was awesome, for the most part.

My stupid veins required FOUR pokes before they got a good IV. So I'm pretty bruised from that. I explained my vomit-phobia and how when I got a nausea patch it helped with the nausea but then I couldn't focus my eyes for three days, but then when I didn't have a patch, I was nauseous all day. So they used fewer narcotics during the surgery, and some extra anti-nausea meds. Although I was insanely sleepy (kept dozing off and hard to wake up from anesthesia), I was NOT at all queasy--which I consider a small miracle.

I had asked to not have my jaw cranked open with the breathing tube like with surgery #1 that resulted in TMJ and a mouth guard for a year, and the anesthesiologist mentioned some form of non-invasive "breathing assist," but Dr. Kinney wanted me intubated. It doesn't seem to have messed up my jaw this time, but my throat is super scratchy and painful (although already better today than yesterday). It's a good excuse to eat soup and ice cream shakes!

Dr. Kinney does several things differently than Dr. Sterkin. Perhaps the best is that he uses Tegaderm over the place where the drains go in, so I was already able to shower today! He prefers not to use a foley catheter (YAY!) and doesn't routinely prescribe oral antibiotics, only putting them in the IV during surgery, so no stinky sulfa drugs! And at least for this surgery, I don't have to wear the horrible, binding, rash-inducing compression garment! Additionally, I've learned since my previous surgeries to use a lanyard to clip my drains to (instead of pinning to my shirt) and that's much more comfortable, too. I can honestly say that I feel much better on Day 2 this time around than I have after any other surgery (except maybe my local anesthesia revision).

Pain has been almost non-existent. There were obviously meds in my IV, but I didn't even take a pain med prescription from Dr. Kinney (That's another difference between him and Sterkin. Dr. Sterkin asked me if I needed more Percocet every visit for the first 3 months. When I told Dr. Kinney that I didn't want to take them and only used Tylenol last surgery, he said that was great and he liked when his patients didn't need stronger meds.)  I took two Tylenol last night before bed, but haven't needed anything since. The only thing causing me pain is my right arm. When I woke up in recovery, that was what I complained about. I think it must have been cranked back during surgery and I have a history of rotator cuff pain. I didn't think to mention it since it hadn't been bothering me. But it was all I could think about when I could stay awake--distractingly painful. And it woke me up in the middle of the night, too. :(  I'd like to be able to loosen it up, but I'm not sure how much I can move my shoulder, as I'm not supposed to move my arms much for healing.

Greg, rubbing my sore right arm as I complained about it after surgery

So there's my update. Thank you to everyone who texted, send messages or comments on Facebook, snail mailed me, and thought about me. I am constantly uplifted by what an amazing tribe I have. This week Cara and Greg and Ash are tag-teaming taking care of me--cooking, shopping, driving, helping me get shirts on, reaching high things. I'll be off work until next Wednesday (the drains come out next Tuesday, fingers crossed). I'm encouraged to walk, so if anyone wants to take walks in the next week, I'll probably be home and up for it.

I'm relieved to have made it to this stage in my journey and would be glad to talk to anyone making decisions about their own surgery and reconstruction. I'm happy to share photos, too, but don't want to put them out in public. Hopefully as I heal, things will appear less drastic. If not, I have some time this week to whip out some knitted knockers, and I can always moonlight as a chip & dip dish. :)

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.

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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.