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!

Post-surgery restrictions lifted!

I had my 8 week follow-up appointment with the plastic surgeon today.  He is thrilled with the way the surgery went and how I look (and feel; yes, my appointments do include a groping).  He has, in the past, had to have his memory refreshed on which side I would have/did have radiation on, which I just chalked up to him having way too many patients to remember that kind of stuff.  But today he said it was remarkable that you could not tell by looking which side I had irradiated.  He said I am the first of his patients (and he's been doing this a long time) that didn't have post-radiation skin darkening.  It's especially odd, given that I both freckle and burn so easily.  It wasn't until I left the office that I began to wonder if it was because I slathered on so much aloe vera during radiation (minimum of 3x/day) that I didn't have permanent skin damage...

So anyway, I still have to wear the Spanx for another month, which is kind of annoying, but the weather is getting a bit cooler, and it's only one more month.  I am cleared to reach over my head, to exercise, to sleep on my side, and even to get my breasts tattooed (next month).  Hooray!  

Life has been busy these last few weeks.  We took a mini-vacation Up North to see my mom and my brother and his family.  The older kids moved into their dorms/apartments to start the fall semester.  Mira began her reign as an only child.  

It's been a long journey since finding my lump over 21 months ago.  I'm not completely done with all my treatments,  I'm still experiencing my fair share of side effects, and I know I'll never be able to not think about recurrence.  But I've also come a long way and that's something pretty important to remember. Perhaps it was best summed up by Dr. Sterkin's response when I asked if I could run, bike, do sit-ups...  He said, "You are free to do any of those things.  It's time for you to start living your life normally again and put all of this behind you."  And that's exactly what I plan to do!

Shower = heaven

I saw Dr. Sterkin yesterday for my 10-day follow-up and to get my right side drain out.  Hooray!  That meant I could shower today, and I did.  It was the best shower ever.  :)  Seriously, if you want to feel absolutely amazing, just go 11 days without showering or washing your hair and then shower.  Instant anti-depressant!

I was even able to work two hours yesterday afternoon.  Two hours was almost enough time to get through my emails from missing 8 1/2 days of work.  It felt really good to be back.

The guidelines to recover from this surgery are pretty intense.  And they've made me more than a little cranky.  In addition to not being able to resume exercise for 8 weeks, I can't reach above my head, or sleep on my side, and I have to wear Spanx so that the uneven fat harvested from my belly settles evenly and not in furrows, like it is now.   I also need a firm, supportive bra to insure that my breasts don't end up all lumpy, too. Seriously, I cannot imagine why anyone would choose elective cosmetic surgery like this.  I'm second-guessing my own vain-ness in wanting reconstructed breasts instead of just going with prostheses.  I would have been "done" a long time ago.  I also just learned that there's not anyone in the area who does nipple tattoos (Dr. Sterkin only does them in combination with nipple reconstruction, which I am NOT doing), so if that's what I want (a 3D nipple tattoo like here or here), I'll have to travel.  Probably also have to pay for it, as opposed to having insurance cover it if I did nipple reconstruction, too.  As someone close to me said, "it comes down to how much you want to pay for nipples that I'm assuming only a handful of people will ever see."  Guess it's time to really think about what else I could/should get tattooed there.  And to search for a good tattoo artist...

As for now, I have all my stitches out (just steri-strips left) and I'm packed into Spanx like a sausage.  But I dare say I smell quite a bit better.  :)

No clearance for work yet.

I had my one-week follow-up appointment with the plastic surgeon this afternoon.  It was originally scheduled for 1:15, and my plan was to see him, get cleared to return to work, and then run into work to pick up my computer and work from home at least a few days this week.  His office called and said he was running late due to a surgery, and switched my appointment to 3:30, so I went to work first and picked up my computer.

Then I was terribly annoyed (and disappointed) to learn that I'm not cleared to return to work yet.

The handout that we got after my surgery was one brief page, and the post-op nurse was a bit annoyed that she didn't have any written discharge instructions, so Greg and I are pretty certain that we had NOT been told that I was supposed to barely move my right arm this first week.  In fact, I was making it a point to use that arm (within comfort--never doing anything painful) so that it wouldn't end up cording again like it had after every other procedure I've had on my right side.  Apparently since my implant is textured, every time I move, the tissue rubs on the textured part of the implant, and oozes fluid.  No wonder I'm still putting out so much in my drains.  Sigh.

I know it is a minor thing in the scheme of things.  Healing is most important and everything looks good.  Bruising is decreasing and there's no signs of infection.  But this is a truly sucky way to spend one of my two weeks of vacation from work.  And I have to re-fill my antibiotic (stinky Sulfa drug) prescription since I still have a drain.  And I *swear* I'm an excellent patient and I would remember if he had told me not to move my arm!

Only now did I get the full description of what I cannot do while I'm healing.  Basically, for 8 weeks, I can't do much of anything.  No aerobic exercise, no carrying anything over 5/10/15/20 lbs. (increasing each two weeks), no stretching over my head.  I can walk, though.  That's encouraged, so I'm open for walk buddies. 

It's really all fine--I just want to get back to normal.  :(

Post-op, days 3-6

Friday I woke up at 5:30 am in a lot of pain.  The stitches--especially those under my right breast--were hurting so bad that it was difficult to catch my breath.  I gulped down my antibiotic and fell back asleep.

Somewhere close to 7:00 am I woke back up and Greg wasn't in bed with me.  I thought that was odd, but to be honest, I was too tired to care.  Next thing I heard was the bedroom door opening and I saw (in the dark, without my glasses on) Greg walking toward me.  But in my muddled head he looked like Cara.  He flopped down on the bed next to me and it took me partway through a conversation with him to realize he WAS Cara!  She'd secretly planned a trip home (overnight--leaving the Twin Cities at midnight) to surprise me.  And it worked.  :)

We spent four days walking, shopping, getting pedicures, cooking, eating, playing games, and just hanging out as a family.  It was fabulous and did such a great job of distracting me from the healing process.


One of the cool things I realized was that I don't have to carry these cards with me anymore:

one for the port-a-cath; two for the expanders

They were for if I had to fly, go through a metal detector, or have an MRI.

~~~~~

Anyway, here I am, six days out of surgery, and on the eve of a visit to the plastic surgeon tomorrow.  I fear it won't be a great visit.

My drains are still pulling out a LOT of fluid.  If it's like my last surgery, I have to be under 10 ml in 24 hours to get them pulled.  The one on my right had 38 ml in the last 24 hours.  <sigh>  I have to wait 24 hours after having the drains pulled to shower, and I don't think I want to go to work having not showered in over a week.  So there's that.  

However, over the last four days, the pain has decreased a lot.  And it's shifted, as the first 4 days the pain was mainly in my incisions.  Now the incisions feel fine (except where the drains are pulling), but my bruising from the liposuction has gotten painful.  Still, I haven't had to take Tylenol more than once a day (not at all today!), and I've been able to gradually increase my steps, getting over 10,000 yesterday!  (Today I had a lot of company/visiting and actually didn't have as many steps)

So we'll see what tomorrow's visit with Dr. Sterkin holds.  Maybe I'll be pleasantly surprised. I will say one thing:  after 5 drains, 2 drains are a piece of cake!

Post-op day 2

Finished one book. Started one knitting project (frogged shrug--repurposing yarn). Took only one nap. Walked 4427 steps. Took 2 Tylenol all day. Feel like I was beaten with a baseball bat from my neck to my thighs, but only when I poke myself. :)

Doing soooo much better.  Hoping to leave the house tomorrow.

Reconstruction Surgery (check)

Well, it's done.  :)   

I have to say, to those of you who said what a breeze this surgery would be, that I wouldn't call it a breeze.  But I am feeling better by the hour.  Greg and I just took a walk around the block and that didn't kill me.

Some things were slightly different from the first surgery.  For one, it was only 4 1/2 hours.  And the anesthesiologist (different one) didn't have me use the motion sickness patch.  In the short term, that was a bad decision (I was really queasy after surgery and the ride down to the car in the wheelchair and the ride home were decidedly NOT pleasant).  But in the long term, I think it was good.  I never had the vision problems and the nausea went away sometime last night.

I also told the anesthesiologist about my TMJ issues and how bad they got after my first surgery.  So instead of the regular way they put in the breathing tube (where he basically said they pull apart your jaw--which is what TMJ is), he used a fiber optic guide to get it in.  So I don't feel like my jaw's screwed up, although I do feel like my throat is a lot more banged up.  Maybe I'm just less "out of it" this time so the little things annoy me.

So bit by bit, here's what they did:

I decided to have the port-a-cath taken out during this surgery.  I know it's supposed to be minor, (done in an office) but I'd also heard that it hurt a lot, so I figured I might as well have it done while I was under.  Also, why not have my plastic surgeon stitch it up?  Probably more meticulous, right?  He also made that incision way over near my armpit so it'll be less visible (not that I really care, but if I have to go through all this, I might as well take the little perks!).

Then there's the implants.  Dr. Sterkin had to make new incisions under my breasts for them because the incisions used for my mastectomy weren't big enough.  He had thought he'd have to put in alloderm (cadaver skin) on the irradiated side to make room, but ended up not needing to.  Those incisions don't hurt much at all.  I'm bruised but its pretty obvious surgical bruising and not very deep.  I have two drains in (compared to five last time) and they have smaller drain tubes.  I'm sure they'll irritate me just as much in a few days, but for now they're okay.

The big surprise in terms of both pain and appearance is where he harvested the fat to fill out my breasts.  When he described it, it was, "we'll just take some fat from your belly to round out your breasts" and I was all, "hell, yeah!"  But it was liposuction (duh) and holy crap am I bruised!  I have a belly-binder to hold things in, but the bruising on my belly and down my thighs is crazy.  Even the post-op nurse couldn't help but make a surprised noise.  I'm assuming that at least part of it is due to my platelets.  Although they were at 85K for my pre-op bloodwork, they tested them yesterday and they'd dropped to 64K, so I got a platelet transfusion  (Once again, thank you to anyone who donates blood, but especially platelets, as I know it takes longer for them to take out the blood, grab the platelets, and then put the blood back)

Other than the bruising, I'm doing really well.  I refused to fill the prescription for Oxycodone and so far my pain is managed fine with regular Tylenol.  I hope to avoid all those other unpleasant narcotic side-effects, too.  :)

I have my follow-up appointment scheduled for next Tuesday afternoon.  My hope is that the drains will come out and I'll be cleared to return to work--at least parttime.  I'm still kind of bummed to not be able to do Summerfest this year, and I don't think I'll be going to the fireworks on the 4th.  But all in all, this went very well.  I have no doubt it's because of all the positive thoughts and prayers that you all sent my way.  Reading everything on Facebook brought tears to my eyes.  Thank you all for continuing on this journey with me!

Surgery #3

I realize it's been quite awhile since my last post. Over two months, in fact--by far the longest I've gone since starting this blog. That, in itself, is a sign of how far I've come. :)

I went two months between visits with Dr. Shah (And it'll be 3 months before I see her again. More baby steps.). My repeat hormone tests solidified the fact that I'm in menopause, so I've switched from tamoxifen to Arimidex. So far, so good, though it's only been 11 days. :)  The reason for the switch is better severe potential side effects (tamoxifen --> endometrial cancer; Arimidex only--> osteoporosis), although anecdotally I've heard that the more-likely side effects are much worse with Arimidex (bone aches). What I've noticed so far is that I'm having very different hot flashes. On tamoxifen, I'd turn beet red and my heart would race. With Arimidex I just start sweating like crazy. (Oh, joy--and if you see me and go to hug me, you might want to remember that tidbit ;))

I also had my first booster shots for the clinical trial (which will be every 6 months for 2 years).  They take blood at each appointment, too.  So I got to make good use of my port.  As my friend Katie says, I ran into a vampire.

I'm psyching myself up for my third breast surgery. (If you want to re-live the others, my double mastectomy with ancillary lymph node dissection on 1/8/15 is chronicled here, and my surgical debridement and re-suturing on 2//15 here.)  This third surgery removes my expanders and replaces them with my permanent gel implants.   I decided 18 months ago to go with shaped silicone implants (called "gummy bears"), so that determined the type of expander I got.  If you want to see the difference between the implants I'm getting, regular silicone,  and saline, here's a photo:

I know I posted about it before, but the expanders that I have look like this.

They're uncomfortable not only because I can feel the metal valve used to add saline, but also due to their size.  I feel them under my arms, and they make things like bike riding difficult. 

Therefore this is the surgery I'd been looking forward to for over a year.  However, now that it's here, I'm a bit nervous.  I keep telling myself that I did just fine with a much more invasive, longer surgery and that this is just cosmetic.  But it's still surgery and as I read over my blog posts (and my private journal) from the first surgery, I may have forgotten just how rough it was!  I'm mostly afraid that I'll exacerbate my TMJ, which has gotten so much better after 6 months of wearing splints.  I don't want to un-do that!  

I'm expected to need two weeks to recover.  I'm hoping it won't take that long, but I've stocked up on reading material (our first 3 book club books now that we've re-formed):

And picked a knitting project:

I'm hoping I'll be up to visiting, and be able to resume walking quickly.

At any rate, all of you have been so wonderful with all the other crap I've had to go through. If you have a chance, send me some positive, successful-surgery-without-needing-a-platelet-transfusion thoughts on Tuesday.  Surgery is scheduled to begin at 7:30 am and last 4 hours.  Greg has said he'll post updates on Facebook.

~~~~~

Other good stuff is happening.  I have enough real hair to have something done with it, so I did--got it highlighted and cut and then we had family photos taken, including some fun ones:

Travis turned 18 and graduated from high school. The time goes so fast.  I still wonder how this baby:

Became this accomplished man:

And finally, our remodeling project is done!  Photos (before and after) are on unpinkening.blogspot.com.  

~~~~~

Happy summer, everyone.  Here's to speedy healing so we can still get some Festivals, Bier Garten visits, and beach trips in.

Herceptin (check)

Today I had my final (fingers crossed) Herceptin.  The last time I will be looking out these huge windows while having (life saving) poison pumped into me (fingers crossed).

Trusty infusion pump

Greg and I went out for breakfast and then he came to my appointment with Dr. Shah.

Almost last port access before it's gone

And then I had enough time to finish (and bind off) my bright pink shrug that I started so many months ago, also in the infusion chair.

It definitely needs blocking!

So a bit of catch-up since last time I posted (March 5th):

My MUGA scan came back at a good level.  The MUGA checks if the heart's ventricles are pumping at a correct level.  It's measured in percentages, and a score of 50% or higher is considered normal.  My score this time around was 61%.  The other scores, were 62% (pre-chemo), 56% (post-chemo, but mid-Herceptin), and 68% post-post chemo and mid-Herceptin.  Dr. Shah won't continue to monitor my heart, as she's very pleased with my numbers.

I had an appointment with my new GYN (my former one retired and I hadn't seen one for almost two years--which was when I was diagnosed with Endometriosis and put on birth control pills (which still make me wonder if that kicked my ER+ tumor into high gear, but I digress).  My GYN looked at my hormone levels and was pretty convinced that I am in menopause.  She supports the switch from Tamoxifen to Aromatase Inhibitors, but respects Dr. Shah's desire to re-test before switching me.  I don't have to be watched any more closely by the GYN due to the increased risk of endometrial cancer (unless I have symptoms), so that was nice to know.  Trying to decrease those visits any way I can--current count is 129 appointments related to my breast cancer diagnosis.

I met with my plastic surgeon and got the OK for my final (reconstruction) surgery.  It's scheduled for June 28th at 7:30 am.  It should last about 4 hours, then I'll be in recovery for about 2 hours and be able to go home (hooray!).  I will have surgical drains again (ugh!), but only two this time.  And I'm supposed to take 2 weeks off of work.  When pressured, Dr. Sterkin said maybe I could return earlier, but not until the drains are gone.  I have only (this month) earned sick leave at the rate of one day a month, and I've been withdrawing time for doctor appointments already, so I'm still a little down about having to use vacation time to sit home recovering from surgery.  Adding insult to injury, my surgery is scheduled for the day before Summerfest begins, so my plan to "do Summerfest" is dashed.  <whine, whine, whine>  On the other hand, the cool things about my surgery include not only getting rid of the uncomfortable saline-filled expanders, but also getting rid of my port-a-cath, and having my new breasts "rounded out" with fat lipo-suctioned from my belly!  (silver linings...)  I did check with Dr. Shah today, and while there is a (debatable) risk with procedures done to the arm after lymph nodes are removed, that doesn't apply to the chest.  What does that mean?  I'm clear to get tattoos after my reconstruction!

I spent a lot of time today talking to Dr. Shah about next steps.  In cancer circles, they call this phase "Survivorship."  It's common to experience changes physically, socially and emotionally.  It's common to fall into a depression of sorts when active treatment stops. Given my history of depression, I'm acutely aware of this possibility.  I definitely know that there is a chance of recurrence.  I am trying to decrease my fears of recurrence, and part of that was talking to Dr. Shah about what to do if it does come back.  My follow-up with her will begin in 2 months, including bloodwork and a clinical breast exam.  If all looks good, my appointments will gradually spread out (3 months, 4 months, 6 months...).  My greatest fear has centered around the fact that my tumors were highly Her2+.  That indicates an aggressive tumor with high chance of recurrence.  But if it does come back, I could go back on Herceptin (which I tolerated well), and there are other therapies that are being developed, targeted at Her2+ cancers.  Dr. Shah shared that she has one patient who's on her third year of Herceptin, post recurrence.  So there are options.

When I first sat down with Dr. Shah to discuss my treatment options back in February of 2015, she shared statistics with me about how likely it is to remain alive and cancer-free, depending on which treatments you chose (given my particular characteristics).  I remember barely listening at the time and just being determined to do everything possible to fight, even if it only increased my chances of survival a few percentage points.  I found that chart this last weekend, and then went to the website where (I think) she got the data from.  It's called Cancermath.net.  Now that I've already survived beyond that time of decisions, my numbers have improved!  :)  So for those who like stats, here's my survival curve, using the specifics of my tumor and the treatments I've done:

I like stats, and those are pretty good odds of survival for many years, in my opinion.  It cuts my remaining time approximately in half, but as I remember distinctly getting my diagnosis and not knowing if I had even a year left, these numbers are actually quite comforting.  I am planning to refer to them when I have my inevitable dip into fears of recurrence.

It was kind of sad to say goodbye to the nurses, MAs, and receptionists today.  I know I'll see some of them on and off for many years yet, but I don't plan to sit in the infusion chairs in the chemo bay for a long time (if ever again).  Today, for the first time in all my chemo/infusion appointments, a patient sitting next to me was ill--vomiting throughout his treatment.  It filled me with an overwhelming desire to bolt, but it also made me realize how truly fortunate I have been.  I have had so many visits and treatments and things done to me, and I have had side effects, and likely will always have some of them that remain.  But in the scheme of things, my treatments have been very well tolerated.  My side effects are annoying, and they linger (I'm talking to you, damn neuropathy!), but I've made it through the active treatments and I feel unbelievably lucky.  I've put up with things I never thought I'd be able to do (like a 45 minute MRI), and I've learned a lot.  I've learned about cancer, immunity, the nervous system, heart function, and hormones--and I've learned that I have the most amazing family and friends in the world.  Thank you all for reading, writing, texting, and hugging me.  I could not have done it without you.

Recovery continues

Moving right along...

Today's been a great healing day.  As I've previously complained about (here and here and here and here), I have the never-ending cording issue in my right armpit.  My OT, Audrey, told me last week that I had won the award for most persistent cording she's ever worked with.  Yay, me!    Cording is a build-up of lymphatics that presents as (of course) a cord.  Audrey said that it usually gradually improves, but sometimes she's heard of it just releasing and that it's not painful or dangerous when it releases--it's just a rare occurrence    So I've been doing my stretches and exercises and massages religiously, and it seemed like the cording was getting a little less intense, but it was hard to tell. This morning I was getting ready for work when I reached down and felt/heard a snap.  I instantly felt my right armpit and yay! it appears that the main cord released.  I actually had about four cords in the same area, so it's not 100% better, but it is so very much better that I nearly cried.

This afternoon I had another appointment with the plastic surgeon and he removed the stitches from the repair surgery and said I'm healing wonderfully.  I am clear (as long as my blood counts are fine) to start chemo tomorrow!

~~~~~

Finally, I've had some time to work on the recovery cardigan since I've been home a lot.  There's good and bad news about it.  The good news is that I'm done with ALL the knitting and just need to do some sewing of seams and LOTS of weaving in ends before I can wear it.  The bad news is that the pattern was inaccurate in the amount of yarn needed.  The last thing you knit is the collar, which stretches the entire length of the below-the-knee cardigan. And I ran out of one of the four colors needed for the stripes on the collar.  What's more annoying, I have two entire skeins of other colors that were extra.  I'm not very happy with Lion Brand Yarn right now, because even if I had gone to buy more of that particular color (it's "cilantro" in case anyone is curious), it would not be the same dye lot and would likely look even worse.  So I remedied it by knitting half as many rows of "cilantro" as all the other colors in the collar.  It remains to be seen how it all ends up looking, but I also wrote Lion Brand Yarn an email, explaining my utter disappointment after all the time invested in this project.

Medical appointments--and knitting

I had my one week follow-up with the plastic surgeon and either I misunderstood, he forgot what he'd told me, or the plans changed when my repair surgery became more intensive (think it's the last of these).  So I did NOT get my stitches out and I did not get "embiggened."  :)  BUT I am healing very well and am cleared for starting chemo next week.  So if all goes well when the stitches come out on Tuesday, and my blood counts are high enough on Wednesday, I will start infusions Wednesday around lunchtime.

The other thing is that I'm able to start running again next week.  I can use the elliptical this week if I want (it's NOT my favorite form of exercise), but it takes 6-8 weeks for sufficient integration of my tissue into the AlloDerm following surgery, so to be safe, no running before 8 weeks.  The last time I ran was January 7th, so I'm wondering if I'm going to have to re-do the whole C25K program from the start again.  Of course, given the horribly long stretch of temps not getting above freezing, I may not want to run--at least not outside, even next week.

~~~~~

Finally, it's been awhile since I posted knitting updates.  I've been working on all three projects to a certain extent.  Trav's socks are slow-moving, as they're my totally brainless knit:

I'm really enjoying Hitchhiker.  I waited so long for the plastic surgeon (before my five minute appointment) that I was able to knit three notches worth on it--11 of the 42.  That was also long enough for me to finally memorize the 8 row repeating pattern!  I like the way the yarn (an old Knit Picks sock yarn) is pooling.

And then there's the recovery cardigan.  I'd taken some time off from knitting it, as it's not portable.  But this weekend I had time to knit at home and this pattern has sucked me back in!  Back, both fronts, and about 1 1/3 sleeves are done.