A slave to the numbers

I missed posting yesterday on the one week anniversary of my diagnosis (I'm kind of big with those kind of milestones--tomorrow will be the 5 year D-day/official diagnosis of my breast cancer). Man, the holiday season seems to suck for this kind of stuff.

Anyway, I've been settling into a sort of pattern. Everyone here is wonderful, but the fact of the matter is that there is a lot of interruption that must occur in the hospital, and especially on the oncology wing. The good news is that, as I've gotten more sleep-deprived, the hospital bed is less uncomfortable and I'm actually sleeping some. The weaning of the steroids has undoubtedly helped as well (I only got those before the three doses of Idarubicin).

I have always tracked my lab counts ad nauseam and one of the nurses here told me a few days ago which numbers I really need to track, and also said that she can get the results before they appear on my medical record that I can access myself. So they keep giving me my counts. I hope I'm understanding and correctly sharing the meaning of each, but I may have to edit.
Here's what they're following:

Total white blood cell count
Normal is 4.2-11.0
If below 1, it's a greatly-increased risk of infection
We want to see this go down, as it shows that the chemo is majorly messing up the bone marrow and keeping it from making white blood cells (infection fighters) which are what caused this overgrowth in the first place

Hemoglobin
Normal is 12-15.5
They will do a whole blood transfusion if it drops below 7.0
Hemoglobin is a protein that is responsible for making red blood cells carry oxygen to the cells (as all cells need oxygen). Low hemoglobin results in anemia. This will undoubtedly go down, so there will be transfusions in my future. I've never had one, but apparently they do make you feel better when you get one.

Platelets
Normal is 140K-450K, but mine have never been that high
They will do a platelet transfusion if it drops below 10K
Platelets are responsible for clotting of the blood, and so it's important to have enough to clot if anything internal or external causes a bleed. As I get more exhausted, falling is more likely (ie: could bleed internally) and I have so many things connected to my skin that external bleeds are also more likely. I did need one platelet transfusion after my mastectomy, and I guess I handled it fine.

Absolute neutrophils
Normal is 1.8-7.7
They call it neutropenic if I drop below 1.5, and exercise additional precautions, including putting me on a prophylactic antibiotic.
Neutrophils are the first line of defense in an infection, so something that would normally be fought off by a healthy person (ie: ear infection) can almost immediately become septic. It may be an overabundance of caution, but I've chosen, with my team's support, to require everyone to mask up now that my levels are low even if they don't have symptoms. It's just not worth the risk.

Blast percentage
Normal is 1-5% in bone marrow, but none in blood
Blasts are partially-differentiated hematopoietic stem cells that populate the white blood cell (infection-fighting) line. In leukemia, they divide uncontrolled (cancer thing) and fill up the bone marrow, preventing effective blood cells of all types to be formed. In leukemia they also spill out into the blood and can be viewed and measured that way. That's how my initial diagnosis at Dr. Shah's office was made. There should be under 5% blasts at any time, and more than 20% are sufficient to diagnose that some sort of leukemia is happening. Mine were 30% in Dr. Shah's office.

So I've been tracking my numbers and while my blasts were trending downward, yesterday they took an uptick, which completely freaked me out. Being mostly stuck in a hospital bed with only your own thoughts (and the internet) is not a great way to be reasonable. Suffice to say that my blasts had gotten down to 2% and then yesterday shot up to 14% (thus the panic) but are heading back down, being 12% today. And that's what we want because it means that the chemo is working. If you want to visualize or vibe or pray, feel free to work on dropping those blasts!

But Dr. Thompson was happy that the other blood counts are all about where they should be. He said an increase in WBC would not be good now, and they are definitely trending down. Neither my hemoglobin nor platelets were low enough for transfusions today--although it's always possible tomorrow. Slow and steady.

I had been able to sleep significantly more last night, and had a hard time waking up this morning. Then late this morning I could barely keep my eyes open. It's got to be the cell counts, and the absence of steroids. I had some people who were going to visit and I had to turn them away. My eyes were rolling back in my head I was so sleepy.

And as I was napping, I felt like I was running a fever. I have always had chills and body aches with low grade fevers since I was a kid. I wasn't sure whether to say or do anything because I was already getting antibiotic in my IV since my neutrophils had fallen so low. At routine vitals, it was found that I had a temperature over 100. It was explained that they'd watch, but if my temp got to 101.5, then the big guns/protections would be pulled in. I'd need blood cultures--from the port but also peripheral. I'd need a urinalysis. And then a chest X-ray--all to insure that the fever was from the chemo but not an infection. I was shivering and the nurses turned up the heat in the room and I put on some fuzzy socks and more blankets. I stopped shivering, but my temp eased up to 101.3. And an hour later, it was at 101.4. The nurse put in a call to the doctor to get things going. :( And then I pried myself out of bed and Greg walked me around the floor. It was tough to keep moving and I just wanted nothing more than to crawl into bed and sleep, but it worked. My temp went back down to 100.8 and just now it was 100.0. I have to remember there's a such thing as too warm!

Not much else to report. I feel like my brain is quite foggy and it's hard to hold a conversation, so if you do come visit, know that I may not make sense. I'm glad I started this blog post awhile before I crashed. I still don't know if I was correct in all that I wrote, but I hope it made a little sense.

Oh, the other big thing that happened today is that I was able to trash the Tele (EKG telemetry). Everyone has to be monitored for a little while, and I'd been doing pretty well but then I think I actually moved in a strange way and caused an irregular heartbeat (v-tach) and so I was kept on the Tele. I did create a game with it where I walk around the floor and whenever there is a display, I seek out my name and measurement and try to get it to settle down and have a normal pattern. After that, I started playing the 87 game--I'd breathe slowly and steadily to try to bring my heart rate down to 87 (because Class of 87 rules...). It broke up my walks.

but it also meant that I had six electrodes stuck to my chest and a heavy transponder to carry around with me. I was pretty happy to say goodbye to the Tele.

And I am almost 5 days into the 7 day chemo regimen. I know it'll be a little longer and it's possible it'll be a LOT longer, but I'm moving forward. Here's hoping those numbers stay/move where they are supposed to be, and I rebound at least a little bit in energy. For now, I think I'm going to take a 7:00 pm nap...

The bullet train

When I was still figuring out my breast cancer diagnosis five years ago, my survivor friend Dawn told me to jump on the breast cancer train, as one thing (a lump) leads to another (a mammogram) and another (an ultrasound) and another (a biopsy), etc. and that if it was really cancer, it would build to a bullet train. I love Dawn and her analogy, but in retrospect, that was not a bullet train. There was plenty of time to stop, think, worry, have sleepless nights, etc. But the leukemia train? That is a freaking bullet train.

Tuesday at my 6 month checkup, Dr. Shah handed me a slip of paper with a referral, because her hospital system does not have any leukemia oncologists. She told me they would be expecting my call and to make sure my phone was charged and on "ring" and that I needed to go see the referral doctor TOMORROW MORNING and be ready to be admitted. The only problem is that this doctor belongs to a hospital system that our insurance does not cover. When I told Dr. Shah this, she said that there is no other specialist in the area and that I should talk to my insurance company to figure out how to make it work. So while waiting for Greg to arrive, I'm on one phone with the specialist who is not covered, trying to find out if I can get an out-of-network exception pushed through by their hospital, and another phone trying to explain to my insurance company that I have to be seen OON because there is no other specialist in the area. Neither of these calls went well.

Fast forward to a few hours later when my Team Phoenix sister Barb came to the rescue, called everyone she could within the Aurora network and got me the names for the most highly recommended doctors in the Aurora system (in network) who DO treat leukemia patients. I shared their names with Dr. Shah, she called and transferred records, and told me that I needed to go right away to St. Luke's emergency department which would be the "easiest" way to get me into the hospital where I needed to be. And she told me to pack as if I'd be staying a long time.

The St. Luke's emergency department was, of course, full of germy kids, people coughing, moaning, etc. And I had just found out that I was pretty severely immunocompromised. I grabbed a mask.

After 8 hours in the emergency department, a whole lot of blood draws--some successful, others not so much, and exposure to some interesting patients, I had a room on the oncology floor. I sent Greg home around 11:00 pm and got all my admission stuff done. And then I tried (unsuccessfully) to sleep.

Wednesday was a whirlwind of provider visits and pre-admission tests. The hospitalist, the hematological oncologist on duty, the cardiac oncology department, the infectious disease specialist, associated Nurse Practitioners, and nurses and nursing assistants and phlebotomists and on and on. And Meredith came to visit:

She sat with Greg while I had my bone marrow biopsy, my echocardiogram, and my chest x-ray. And then, because my blood counts weren't frighteningly low and because I was put on a protective antibiotic, I was able to go home and sleep in my own bed for two days, have thanksgiving with my extended family, and love on all three of my kids, including putting up the Christmas tree.

Friday we went to the outpatient clinic for labs and an appointment at noon. I got my definitive diagnosis of treatment-related acute myeloid leukemia (t-AML). They do genetic testing on the bone marrow that takes longer and it can tell what kind of mutations caused the leukemia. However, the fact that this is treatment-related already escalates it to a more severe case. I was told to walk across the skywalk and be admitted to in-patient at St. Luke's. I was packed and better prepared this time.

I got a slightly different room with a slightly less desirable view, but my luck continues with excellent staff all around. I've been hospitalized before and I spent a lot of time with my mom during her hospitalizations and there is often some staff member (usually a night nurse) who is not the most agreeable person. I have not found one difficult staff member yet here at St. Luke's. They are amazing and positive and friendly and willing to answer my millions of questions at the level I can comprehend. And they repeat things when I forget or need clarification. I feel very confident that I'm where I should be.

So now the treatment plan, which is, of course subject to change along the way. It seems to follow pretty closely the treatment guidelines that the ACS spells out.

1. Chemo to induce remission: I got in the hospital Friday afternoon, had my picc line inserted, and started chemo that night.  It wasn't until I was reading later that I understood the urgency. Apparently survival of untreated AML is "measured in days or weeks." 

   

   so much better than being poked over and over

2. Regimen includes:
1. Three Idarubacin infusions of 15 minutes apiece over three days. This is an anthracycline similar to Adriamycin (the red devil) which I received for breast cancer treatment. It's reddish orange and kind of scary looking. I have completed two of the three. 

   

   My best friend, the IV pole

    2. Continuous (24 hours) infusion of Cytarabine for seven days straight. 

These will hopefully knock out my defective bone marrow completely over those seven days. I will then stay in the hospital another 1-3 weeks while getting blood (if Hb < 7) and platelet (if <10K) transfusions and be monitored for infection and all the other fun medical stuff that can happen when you have no immune system. After one week, I'll have another bone marrow biopsy to see if the chemo actually knocked everything out (we hope that it did--I'll be asking for all your positive thoughts at that point). If it did NOT, I'll need more chemo to attempt to knock it all out. Either way, I will follow the intense period with

 3. Consolidation: I will come back to the hospital four more times, once every four weeks, to get more high-dose infusions with Cytarabine. This will hopefully knock out any remaining leukemic cells that made it through the initial intense phase.

For some low risk cases of AML, this is all the treatment that is needed, and a person's immune system essentially gets jump-started back to normal. But given that this is t-AML (and we don't yet know the genetic markers), it's treated as higher risk, and the next step is:

4. Bone marrow transplant: I'm not a candidate for autologous stem cell transplant (from yourself), so this will be an allogenic (donor) transplant. Siblings are the best chance for a match, but they're only about a 50% chance. I have high hopes that my brother is more like me than he thinks. :) If he's not a match, I'm not sure if they look to other relatives first or just open it to an anonymous donor. That won't happen until spring/summer, so I haven't focused too much on it.

----------------------------

Whew! That's a lot. I cannot believe I've only known about this less than five days and am already this deep in. Truly a bullet train. In many ways it's been easier than with my breast cancer diagnosis because there's been no time to think--just to act. But it's also scarier--both because I've done something like this before, so I know how crappy it's going to be; but also because this is a bigger deal. And I only know one person who has done this, so I don't have as many people to draw on their experiences. I don't like uncertainty!

I do have some positives going for me. I'm “young” (defined as under 60). I’m in pretty good physical shape (thank you, Team Phoenix, Cadence, and my Fat Biking buddies!). My heart function tests apparently came back really good, despite being on two cardiotoxic drugs with my BC treatment. All my other tests (kidney and liver function, electrolytes, x-ray, communicable disease, etc.) are great. My blood pressure, EKG, pulse ox, etc. all look great. My appetite has returned (hello, steroid pre-meds) and they encourage walking the hall (have to stay on the oncology floor) and have exercise bikes out for patient use. I'll be doing my best to stay as fit as can be so I can be back on a real bike as soon as I have enough platelets to do so!

-----------------------------

As people have found out about this, they've all been so supportive with positive thoughts and offers to help. At this point, I don't think we need anything in terms of help with meals or anything like that. I'll be in the hospital, being taken care of, and only Greg and Ash are home. They'll have two cars so able to get themselves around. And they're both in and out, busy with so many things. I'm sure there will be a lot of frozen pizza or other quick/take-out meals, and that's fine. Cara will be back from grad school in two weeks and she's excited to cook in a real kitchen and generally take care of us all. Travis will probably be home a week after that. And Ash has always been immensely independent and able to cook and clean and help with everything. I made some awesome kids and chose a fantastic life partner.

I will try to keep up with this blog to send out bigger updates (or just to entertain myself with all my hospital time). I'll put little updates on Facebook. My dear Team Phoenix sister Meredith has offered to organize visits if it comes to that. At this point I am free to have company, and after today I'll have less family company, so happy to have visitors, especially during week days--as long as you're not sick and haven't been around someone sick. I'd ask that you text me before coming in case I'm particularly exhausted or if like five people want to come at once. And I may reserve the right to send you to Meredith to organize. :) I cannot have any plants or flowers (germs). I have to be careful with foods brought in. So no gifts--just company and emails or texts or messages. As with the breast cancer journey, I know it's my friends and their positive energy that got me through as well as I did. I'm hoping for the same this time.

And if you really want to DO something, please donate blood or platelets. I'll be drawing a LOT from the stores that currently exist. I'd feel better if they weren't depleted. And if you do, let me know. I'll thank you profusely.

May I also suggest that sign up for "Be the match"? If you are between the ages of 18 and 44, your bone marrow is more effective in a transplant. You don't have to donate anything (other than a cheek swab, I think) unless you're matched with someone. You could literally save a life.

OK, let's do this thing!

And I almost made it...

In the cancer world, one of the most frequent metrics is 5-year survival rate, or DFS (disease-free survival). Although we all know people who have had recurrences both before and after the 5 year mark, my father-in-law told me that actuaries, who determine things like when a cancer survivor can again buy life insurance, must be onto something or they wouldn't use that 5 year marker. So it's a pretty big milestone.

Since my surgery was January 8, 2015, I count that as my cancer-free day, or my cancerversary. This January would not only be 5 years since my double mastectomy, but also the month of my 50th birthday. I was vacillating between how I wanted to celebrate these two milestones. Did I want to throw a big party with all my friends? Or did I want to do a getaway somewhere warm and sunny with just Greg?

This Tuesday was my routine 6 month check-up (and Zometa infusion) with Dr. Shah. When I met with her and we went through the symptom checklist, I told her how I'd been more sick this fall than I can remember ever being. She asked some other questions (fevers? chills? more tired than usual? headaches?) and decided that, although she didn't think it would show anything, she was going to have me get scans (brain MRI and abdominal CT) and would run blood tests for tumor markers just to put us both at ease.

The beautiful view of the Lake out of the infusion bay window at Ascension

And then my blood tests (CBC) came back. My counts were off. My red blood cells, hemoglobin and hematocrit were all low. My platelets, normally low, were frighteningly low (20K). I told Dr. Shah that the nurse had had trouble getting blood and that it's possible the blood clotted in the tube. She looked relieved and had them draw another tube. Unfortunately, it, too, showed extremely low RBC and platelets. She said she wanted to have the hospital lab examine a smear, and could I wait? Was my husband available?

The smear came back showing blasts and consistent with acute leukemia.

Of the long list of things that could happen post-cancer, this was (is) not something on my radar--at least not once I got a year out of treatment. Two of the chemos that I had for my breast cancer treatment (adriamycin and cytoxan) carry a very small (~0.5%) chance of causing leukemia in the ten years following administration. Lucky me. A whole new series of challenges and treatments.

I was so close.  So damn close...

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!

55378008

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.

----------

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!