October 1^st marks the start of Breast Cancer Awareness month. Get checked, do a self-exam, and know your family history! Take steps for early detection and remind friends/family to do the same.

I am participating in an 80KM fitness challenge and fundraiser on November 6^th benefitting the BrightPink organization. I will be joined by my friends Angelia Liu and Jess Mykytiuk. You can donate to the cause by visiting our team page. Thank you in advance! 🙂

Big thanks to Justin Finkelman for designing the sweet tanks we’ll be wearing during the challenge! (http://www.fitnesswearinc.com)

Being that I seem to start many of these posts with a time frame point of reference from the surgeries, I am now 7.5 months post double mastectomy and 4.5 months post final surgery. I always meant to write something around how the recovery after that surgery was/went, things that stood out, etc. but with being back into the throngs of work and a flurry of weddings, short trips, and (finally) warm temperatures in Chicago I absentmindedly put this off.

The final surgery was pushed up a week as one of my incisions was starting to open (as my sister Liz described in more detail in the last post). In addition to my final implant surgery being moved up a week, the incisions opening early also required the surgeon to remove some of the skin from the “angry” area (the skin around the incision opening) and pull in/tuck under some skin, and suture up the incisions more tightly. There was also some tissue that had built up around the expanders that had to be cut out.

I’ve learned that incisions opening unexpectedly weeks or months post-double mastectomy isn’t unheard of, but definitely is not very common. I got involved with the Bright Pink organization in February—literally filled out the application to become a PinkPal mentor while recuperating on my couch—and was paired with my first “Pal” in early April. [Bright Pink is the only national non-profit organization focused on prevention and early detection of breast and ovarian cancer in young women 18-45.] This young woman also had her incision open unexpectedly and had to go back in for a corrective surgery. Again, I don’t think incisions opening months post-surgery is particularly common, but it does happen.  I happen to have thin or less tissue in that area than average and may have overdone it a bit in terms of getting back into my workouts too aggressively or early (in my defense, they did say I was cleared to do anything).  Still though, whether or not you’re likely to have an incision open post-surgery cannot be predicted.

I feel like I was in far more pain coming out of the 2^nd surgery (implant surgery) than the 1^st, which is likely due to the type of anesthesia used and pain meds, but it subsided much more rapidly. I had one, focused pain-point for a few weeks that the PA explained is the location of a deep and strong stitch that lifts the skin up and in which will ultimately result in a more natural look when I am all healed. I wasn’t allowed to do any form of exercise for six weeks and was also under restrictions as to what I was allowed to carry or lift. In total, I had three appointments with the plastic surgeon following this surgery: post-one week, -six weeks, and -twelve weeks. My next appointment isn’t until April 2017 (whadduppp).

Now I feel great, keeping in mind that my body is still recovering and things aren’t back to how they were before the surgeries, nor will they ever return to that “normal.”  Instead, I just have a new baseline for what constitutes “normal”. (Perspective is everything.) I’m working on my range of motion which isn’t fully there. For example, lying supine I can’t keep my arms straight and move them towards my head beyond shoulder level. I’m running a lot without any issues but can’t do chest exercises (i.e., push-ups). As the PA explained, doing so could move the implants down and towards my back (this resulted in a drastic image in my head, which I’m sure is far more exaggerated than what could realistically happen, but still let’s not mess with that). This directly impacts what fitness classes I go to and modifies my yoga practice (twisting isn’t fun either).

Generally, I don’t have any pain now, although at times when I move a certain way I’ll feel a quick, sharp pain. I still sleep mostly on my back and sometimes on my side but I have to move around a bit to get comfortable. I’m pretty much able to wear whatever clothes I feel like, excluding anything particularly tight that has to be put on / pulled off over my head.  (I got stuck in a shirt once – aggravating as hell at the time, entertaining in retrospect.) Bras are uncomfortable, and I technically don’t “need” to wear one ever again, but I of course do if the clothing material requires it. I’d recommend other women who go through this to stick with underwire-free and front closure bras and most definitely do not get sports bras that are too-tight (again, you don’t actually need to wear one but working out without one just seems weird to me).  The scars look far better than I was expecting. You can slightly see the edge of the one on my right side when in a swimsuit (the side where they had to cut out more tissue) and they will continue to improve over time. If I go for a long run, the skin all along the scars will get pretty red but that’s also progressively getting better. I’m a bit more self-conscious about having the scars than I initially expected I would be, but I’m sure that’s also something that will fade with time.

I have been asked frequently, “Are you still happy you did it?” and the answer is 500 times yes. Through both this blog and volunteering as a PinkPal mentor I have spoken with many women who are either considering the surgery or who have already scheduled it. Some of them are high-risk carriers, like myself, who opt to do the surgery while others have already been diagnosed with breast cancer. Learning about the additional treatments, procedures, fears, lifelong risks, etc. is both eye-opening and heart-wrenching. Thankfully at the time of my surgery I still had options and could essentially take my time making my decision.  Even then, and even knowing that going through with the surgery would reduce my chances from getting breast cancer from 88-92% to ~<2%, it was still a very difficult decision to make.

Once diagnosed, you may have some options but those options are limited and there are time constraints placed on your decision-making.  Worst of all, there’s still a lifelong chance of recurrence. Often times the emotional impact on the diagnosed woman goes well beyond the diagnosed woman’s fear for her own health, and she selflessly worries about the effect on those close to her; every woman that I’ve spoken with who has been diagnosed mentioned not only her own (obvious and understandable) fears but also her worry over the effect on her children, significant other, family, etc. It’s a selfless thought that just adds to the respect I have for these women and how strong they are.

Is the surgery a cakewalk? Hell no. Is the recovery easy? It can be a bitch and absolutely aggravating (for example, getting stuck in your own shirt). Life is short, and I’m sure being diagnosed with any kind of life-threatening disease puts that into perspective, but life really can be freaking LONG…or I at least hope that mine will be and getting this surgery takes one large risk factor off the table. There is no way that I could have made it through the surgery and recovery without all of the love, support (especially my parents – Cheryl/mom in particular who spent 6 weeks in Chicago to take care of me), well wishes, texts, emails, letters, care packages, etc. throughout the process. It was honestly overwhelming and I am incredibly thankful and fortunate to have such amazing people in my life. For anyone considering this surgery or has a family member/friend in a similar situation, I am more than happy to connect and provide any insight or advice (via email).

I know this post may come as a surprise to most people, as T wasn’t scheduled for her final surgery until Friday, February 12th. But she started having some issues earlier this week, and had her surgery yesterday mid morning!

Wednesday morning started out as a normal day. T went to the gym early before work. When she got out of the shower (at the gym), she noticed some blood on her towel, and thought that her nose was bleeding. She checked her nose and realized it wasn’t the source of the bleed, and after a few seconds of checking around, it became apparent that the bleeding was coming from the edge of her right incision. There was a dime size, circular area that had developed, was very red, and was bleeding (see a “zoomed in” look of her incision swelling below).

Unable to take a picture of the area, T nicely asked a random woman in the locker room if she could take it for her. T explained to the woman her situation (prior to asking her to take the pic for her), and it just so happens that this woman’s father was recently diagnosed with breast cancer. T and this woman had a short, but intimate conversation about this, BRCA2, and the Bright Pink Organization (which she encourage T to look into) and I think it is testimony to the saying that everything happens for a reason (as Cheryl would most definitely say!). This nice woman took a picture of the swelling area for T, and she sent it to her nurse immediately.

Upon receiving the picture, and the nurse called and asked T to come in as soon as possible to meet with Dr. Fine. Because Dr. Fine was tied up in surgery, T saw one of his partner’s P.A.s, who immediately wanted one of the docs to see it. They brought in a different physician, who drained 60 cc of saline from the right expander. He covered the incision with 2 steri strips, and then told T that she needed to to push up her surgery to as soon as possible and he would go speak with scheduling and inform Dr. Fine later that morning. The physician was concerned that the incision opening would not make it until her February 12th surgery date (basically that it would continue to open, the expander would become exposed, infection can start/expand). Luckily, Dr. Fine had an opening on Thursday AM and they just need to secure an OR spot and anesthesiologist.

We were all shocked and worried when T sent out a group message to our family (yes, our family has a daily “whatsapp” group message going) to let us know that she would be going in for surgery not next week, but tomorrow (Thursday 2/4/16). I called T to discuss this with her, and I so impressed and proud of her for being so brave. She no longer had another full week to mentally prepare for her surgery – she now had less than 24 hours. I can’t even imagine what would be going through my mind if I were in her shoes. When T is further along in the recovery, I know she will post and she can express her thought process throughout all of this craziness! But from my perspective on the other end of the phone, she was as cool as a cucumber – she got everything taken care of with work and was ready to go! My mom, being the wonderful mom she is, immediately packed her belongings and drove to Chicago on Wednesday night. She arrived to T’s apartment around 8:30 pm.

Her surgery was slotted for 10:30 AM on Thursday morning, February 4th. T and my mom woke up, had breakfast (Cheryl), read the paper, and then headed to the hospital around 8:30 AM. When I spoke to T yesterday morning on the phone, she sounded relaxed and ready for the surgery. If she was scared, I sure couldn’t tell. We chatted for a few minutes – I told her that I felt that even though this surgery was sooner than she expected, the suddenness of everything wouldn’t allow her any extra time to worry or over-analyze her thoughts for another week. She was finally at the last “pit stop” of this journey, and she was so close to the finish!! I respect and look up to T so much for being so brave, so light hearted, and so open minded throughout this whole process. I know that I could not have handled all of this so gracefully!

T’s surgery didn’t actually begin until closer to 11:45 AM. Dr. Fine was held up in a previous surgery, where his patient’s expander edge broke through her skin, which is the concern the doctor had for T’s prior issue which resulted in her getting a second over expansion. Once the surgery began, it lasted for about 2 hours. My mom did a great job keeping us all posted via calls and texts. When T got to the recovery room, her core temperature was only 95 degrees, so they had to use a machine to help increase her body temperature to normal. While it didn’t seem “normal” to T at the time, apparently this does happen quite frequently for these types of surgeries, where the patient is lying for quite some time with their chest cavity open, in a cold surgical room.

After a few hours in the recovery room (and once her body temp was back to normal), T was able to head home with my mom. She got home around 4:30 pm, where she returned to her previous post-surgery spot: the couch!

T was in quite some pain yesterday afternoon/last night upon arriving home. She is taking Norco (q 4 hours) and Tylenol in between as needed. The pain is much greater this go around in comparison to her previous surgery. Last time, she had a local anesthetic pump “built in” that delivered local anesthesia as needed, in addition to her pain medicine regimen. She also had a larger surface area numbed for the last surgery, in comparison to this one, which took longer to wear off. She again has a scopolamine patch behind her ear, which will stay there for three days to help with nausea. T was able to eat some food last night, mainly soup, a few graham crackers, nuts, and an orange. I got to speak with her around 8:45 pm (central time). She expressed that she was in pain, but at the same time she was in good spirits, and very happy to have reached this point in the process.

I know T is in the best of hands (thanks to Cheryl) as she attempts to get a good night’s sleep on night #1 post-surgery. I can’t think of anyone more comforting at a time like this than Cheryl….. #numberonemom.

Sleep tight T!!!! (hopefully!)

It is crazy to think that it has been three months since the initial surgery…and it’s now less than three weeks before my final surgery: 2 weeks and 2 days to be exact. Generally, things have been really good and all things considered I can’t complain. I returned to work on November 30. That was one of the harder adjustments for me as I still didn’t have my normal energy back, was having occasional pain, and was under restrictions. I’m not a person to say “this is too much” when it comes to work; I enjoy a good challenge and take pride in pushing myself beyond my comfort zone. Acknowledging and embracing that it would take time to bounce back to my normal levels of physical fitness, mental endurance, and everyday energy has proven hugely important. This mentality, I think, saved me from large amounts of added frustration.  (Of course, easier said than done. Despite my best efforts, I definitely let my frustrations with the recovery process take control at times. Thank you close friends and family for dealing with my occasional tearful breakdowns.)

I finally went for my first run the week before Christmas when I was back in St. Louis. I’ve never been so happy running the rocky, hilly paths at a local park (even though I had to walk up most of the hills).  Since then, I’ve been able to run, walk, and elipticize fairly regularly with limited pain, although it is a weird feeling at first. The first several times back out were always followed by discomfort and soreness in my chest (andddd my legs and generally entire body having been out of the game for a few months).

Since my first fill appointment on November 10, I’ve been back in six more times (with the fifth being my final “over-fill” and the sixth I was not planning on having). The appointment itself is super quick and painless, as I mentioned earlier. By the third appointment I started to feel tightness almost immediately after the injections. Slowly thereafter, the tightness, pain, and discomfort would increase; even with Benadryl and Tylenol I barely would sleep the night after. I’m still only able to sleep on my back and kind-of of my left side. I worked from home the day following each appointment and laid low for a few days until it all subsided. The duration of pain post-fill seemed to get a bit longer after each subsequent visit. Again, everyone has a different experience.

I have had one issue during the recovery. Since day one, one of the expanders has stuck out of the side of my chest. For lack of a better way to describe it, it literally looks like the edge of a child-size football is sticking out of my side. The doctor described this as being a result of the expander not being “fully expanded” yet. When they insert these during the initial surgery, they roll them up and then with each fill appointment the expander unfurls a bit more. Earlier on, I had bruising and redness on about a 2-inch diameter area of skin. With each appointment, the edge got a bit less “pointed” and the bruised area diminished but the redness got worse and was focused on a smaller area of skin. Upside: I didn’t feel any pain here due to the permanent loss of feeling that comes with getting a double mastectomy. Downside, I assumed that no pain = no issue.

There are a few considerations that accompany this. First, from a purely superficial perspective, I was/am pretty self conscious about how it looks. I have not been without a scarf draped around my neck and over my chest or instead wearing a loose sweater or button-up (to the point that a coworker asked if I was at O’Hare last week as he saw a brunette with a scarf stream past and I’m the only female that he knows of that is always with a scarf…for the record, it was me and I do always walk with a purpose). Second, from a medical perspective, there is a chance of necrosis, which is where the cells in the tissue die (I recommend NOT googling this term). Although it is a very small chance, it’s a pinch alarming to hear your doctor tell you this. After my final overfill appointment, the redness got worse to the point that my mom (who consulted my dad and our family’s dermatologist) sternly told me that I needed to call the doctor. After exchanging some pictures via text with his nurse they had me come back in. The doctor did a second over-expansion in hopes that it would force the expander to further unfurl thus smoothing out the edge and reducing the pressure from that one, focused spot. The tradeoff is that I have a consistent level of discomfort due to the added pressure (and my clothing options have dwindled – more challenging from a work perspective).

Luckily, the final surgery is scheduled for Friday, February 12th. It’s supposed to be a pretty easy surgery that will not require an overnight stay in the hospital: a few hours under for the surgery followed by a few hours recovery in the hospital and then my mom (thanks Cheryl!) can take me home to recover fully. I will be out of it for a few days but am targeting to return to work on the following Monday (albeit, working remote that entire week). It it should be all downhill from there! (And just in time for Valentine’s Day! Totally kidding on that…fully aware that my dad/brothers/uncles may read this, but when someone sent me that it made me laugh so I couldn’t resist).

As mentioned in previous posts, during my surgery the plastic surgeon placed two tissue expanders under my chest muscle to replace the breast tissue removed by the breast surgeon.  In case you don’t know what a tissue expander is (I didn’t), it’s basically just a temporary, inflatable breast implant designed to stretch the skin and muscle to make room for a future, more permanent implant.  (See images below.)  Each of the expanders includes a port through which a saline solution is injected during fill appointments (thereby enlarging the expanders).

This past Thursday–roughly 2 and a half weeks after my surgery–I went in for my first fill appointment.  I wasn’t too nervous as I had done a lot of research on my own and based on conversations with other women who have had this, it really shouldn’t hurt. If anything, I was actually kind of excited as it meant that my body had healed a decent amount and getting the expanders filled would be kind of fun (in my mind).  To begin the appointment, the PA removed the steri-strips from both scars on my chest, which were still pretty raw.  She then took out a magnet to find the location of each expander’s port and marked the location on my skin.  She then inserted a needle through my skin at the marked location and, with a syringe, injected 60 CCs of saline into each expander.  (As mentioned in an earlier post, only a fraction of the total volume is injected during each fill appointment to allow the skin and muscles to slowly stretch.)

Left:  an expander; Right: example of the port’s magnetic properties [Image courtesy of Specialty Surgical Products,  Inc.]

[Image courtesy of breastcancer.org]

A Tissue expander — unfilled
B Port
C Catheter
D Syringe
E Ribs
F Pectoralis major muscle
G Other muscles of the chest wall

Because I now have permanent loss of feeling in the chest area, the injections didn’t hurt at all (a nice perk).  The PA warned me, however, that I may have pain and discomfort later in the day or the next morning.  Unfortunately, she was right.  About three hours after the appointment, I began experiencing moderate pain in my chest which lasted for about a day. It wasn’t debilitating but noticeable enough that I barely slept that night (no longer on narcotics, just rotating Advil/Tylenol) and didn’t want to move much.

The plan is for me to continue with fill appointments on a weekly basis (with the exception of this week – Happy Turkey Day!) until I reach my desired size.  At that point I can schedule my final surgery which will be, at the earliest, early February.  One month before my final surgery, I have an additional fill appointment where the expanders are enlarged beyond my desired size to allow more room for Dr. Fine to work with during the final implant surgery.

One of the first questions I have received from oh, a strong 80% of people that I’ve spoken with about my surgery was, “So you getting bombs?” The quick and short answer is NO; I wouldn’t know what to do with them and would likely topple over (but still an entertaining thought…I think my family would die). After a few laughs and a “but really, just imagine it, hilarious” the question evolves into, “But seriously, what size and how do you decide?”

The doctor can’t tell you that X number of fill appointments will make you a B or C cup (or beyond, get it girl), as it completely varies based on the frame of the individual. What the PA and one of the women I spoke with recommended was to either: (1) buy a bra the size you want to be and continue with the fill appointments until the bra fits correctly or (2) continue the fill appointments until your clothes get to a point that they almost no longer fit. As I was happy with my body and chest size prior to the surgery, I plan to do a combo of 1 and 2. I don’t want to go to a point where I would have to order clothes a size up to fit my chest but then would need to get them tailored down to fit my body.  I also don’t want to look all that different. BUT – the option is always there for any woman that goes through this. I say: if you want it, get it. If you get it, flaunt it.   You’ve put your body through some shit, so if you decide to “go big or go home” then by all means do, who is anyone to judge.

There are a number of breast reconstruction options after undergoing a single or double mastectomy. Some women opt not to get reconstruction and can choose to get a prosthesis. Determining which option is the right choice for an individual is based on numerous factors, including: whether the surgery is prophylactic or due to having breast cancer, if the individual is a candidate for nipple sparing (“subcutaneous”), chest size, and age. The decision will be made based on a discussion with your plastic surgeon who will recommend one (or potentially a few) option(s) based on your unique case.

There are three that my surgeon discussed with me, although he only recommended one. Regardless of which of the below approaches is taken, breast sensation is permanently lost in the mastectomy breast(s).

1. Tissue Expander Implant: This is the “easiest” option of the three, comparatively, and the path that I’m taking. The hospital stay and recovery time is the shortest and there are no additional scars beyond the scar from the mastectomy, but it does take at least two operations. Also, there is flexibility in selecting the final breast size in bilateral cases (more on this below). Additional details can be found here.
2. Latissimus Flap +/- Implant: This involves transplanting an oval flap of skin, fat, muscle, and blood vessels from your upper back to the chest wall which is used to reconstruct the breast. This option requires an additional night or two in the hospital compared to the Tissue Expander Implant and the recovery time is a few weeks longer. There will be additional scars on the patient’s back and a circle on the affected breast(s). A more eloquent explanation of this can be found here.
3. Abdominal Tissue (TRAM, DIEP, SIEA): Essentially this involves transplanting excess flesh/tissue from the abdomen to the chest wall and using that to reconstruct the breast. This is the most involved option with an average hospital stay of three to four days, the longest recovery time, and additional scars on the patient’s lower abdomen and a circle on the affected breast(s). The one upside with this option is that due to the excess flesh/tissue taken from the abdomen, the patient also essentially gets an abdominoplasty (aka, flat abs). Again, a more eloquent explanation of this can be found here.

As mentioned above, I did the Tissue Expander Implant. Based on my physical build, weight, chest size pre-surgery, and because the surgery was prophylactic, the doctors were able to put the expanders in during my initial surgery immediately after Dr. Bethke (the breast surgeon) and his team removed all of the tissue. This is called immediate reconstruction whereas some women have to get this done in two surgeries.

Now that my drains are removed and my body has had about 2.5 weeks to heal, I should be able to start my fill appointments with the plastic surgeon, Dr. Fine. I go in once a week for these fill appointments during which Dr. Fine will inject a small amount of saline solution into each of the expanders. The maximum frequency allowed for these visits is once per week. This approach is taken to allow the skin to stretch a little at a time and even with this small amount there is still pain and discomfort following the appointment. Once I reach the size I want, I stop going in for these appointments. On average, if one goes in weekly, it takes 1 to 1.5 months. These appointments can be spaced out further to every two or three weeks, which some women who are also undergoing chemotherapy during this time may opt to do. Regardless of when I reach my ‘ideal size’, the earliest I can get the final surgery is three months post-op (so sometime early February). My first fill appointment is tomorrow.

There is one other step to the reconstruction which is the nipple reconstruction. Some women are candidates for a nipple sparing mastectomy (or subcutaneous mastectomy), where the nipple is not removed. There are different criteria that the breast surgeon considers, such as chest size pre-surgery and whether or not the woman had/has breast cancer (I know there are exceptions to this). Subcutaneous mastectomies are less common as some tissue is left behind which could later develop breast cancer (although the probability of getting it is < 2 to 3%). For women who have to have the nipple removed (simple or total mastectomy) they have three options for reconstruction.

1. Using Tissue: In a separate surgery, the doctor makes a small incision on the breast, raising the tissue and forming it to mimic a nipple. You can then get the areola tattooed on, if desired.
2. Nipple Tattoo: There are certified medical tattooists who specialize in 3-D nipple tattooing (Vinnie Myers is the most well known, who is also a former Army medic). You can find examples of their work online which I find both fascinating and impressive.
3. No reconstruction

I’m 11 days post-surgery and getting better everyday. I can shower 90% independently, it just takes a really long time. I still need assistance getting dressed and have limited wardrobe options. I’m up and moving more and have bursts of energy where I feel mostly normal other than the obvious (limited arm movements and inability to do certain things), but if you saw me sitting there and didn’t know I had surgery you would have no idea. There is still some pain and tightness but it’s at a very manageable level and I’m diligent with switching off between 650 mg Tylenol and 600 mg Ibuprofen every 3 – 4 hours. I do tire fairly quickly though and after being active or even just talking a lot (which I tend to do) I then completely zonk out.

I’ve been getting out daily for walks with my mom which feels so nice just to be outside. I still struggle with things, such as opening doors and getting coats on/off. For example, we stopped in Water Tower Place and I had to use the restroom. I was able to get into the restroom on my own by putting my back against the door and using my body to move it, but when I tried to leave I got stuck and had to knock and yell for my mom to open it. I kind of feel like an asshole having my mom open doors for me when we’re out, but it is what it is (sorry for the language, Cheryl). It’s also embarrassing needing assistance to get my coat on and off as I stand there with the coat halfway on, flailing my lower arms akin to the scene in Tommy Boy where Chris Farley is swinging around singing, ‘Fat Guy in a Little Coat’ (except I’m far less happy about the situation).

Today is my third day of PT which is going well, although I can’t really tell if I’m making progress. Some of the exercises feel like I’m tearing the scars open and/or muscles and ligaments in my arms and chest, although the PA assured me that there’s no way that would happen. Others are mild and not bad. I definitely recommend taking some pain meds 30 minutes to an hour before doing them. Below is one of them where I stand facing the wall and walk my hands up until I feel a stretch, then walk back down. Repeat 7 times. Pretty boring.

I look like a nut job and could have been cast in The Blair Witch Project or The Ring.

A lot of the swelling has gone down in the chest and there’s limited bruising left.  At times I can truly feel the expanders; it’s an odd feeling of two foreign objects in your body. One of the women said they had the same experience and once I get the final surgery in February where they replace the expanders with the permanent implants, that feeling goes away. I’ll write another time on how that whole process works as it is what I found the most fascinating and what others seem to have the most questions on.

It is eight days post-op and, as I’ve mentioned earlier, I’ve made more progress than I thought I would by this point. After the 12 block walk on Friday I only made it two blocks on Saturday and otherwise was asleep on the couch. Being someone that is used to running a lot and doing yoga / yoga sculpt, it is mentally painful to realize that walking < 1 mi is more draining than running 7 miles pre-surgery. But it still feels great to get out and move a bit and any progress is something.

I’m able to lift my arms almost to the point where my upper arm is parallel to the floor (with my elbows bent – kind of like I’m doing a chest press), although I’ve found that as the day goes on or my meds wear off it’s most definitely less than that. I still can’t move my arms very well straight back or straight up from my sides. My right arm also has a bit better movement than my left as well as less pain than my left side. As a result, I still can only wear loose button-ups / zip-ups and my mom has to help me get dressed.

I had separate appointments with each of my surgeons today and both went really well. They removed all four of the drains…drain free! I was not expecting this when I went in as, on average (from my understanding), you typically get two removed (one per side) ~1.5 weeks post-surgery and then the final drains removed the week after that. The determination for when the drains can be removed is based on the output from each drain. My mom was stripping the drains every six to eight hours, after which she poured the output of each into separate jars which she then measured. Three of them have had about the same output while one of them barely had anything, which is completely normal for them to vary. She tracked all of this in a packet of papers that the plastic surgeon (Dr. Fine) provided us. Once total output for one side (two drains combined) is less than 30 cc’s  (cc = cubic centimeter) in a 24-hour period, then they can be removed. As of yesterday, I was at 16 and 24 cc’s compared to last Wednesday morning when I was at 52 and 74 cc’s.

For anyone who may get this surgery at some point, the drains really are more uncomfortable than painful and it’s an annoyance to have to carry around these things that are sutured into your sides. I feel like I complained about them a lot but it really isn’t anything unbearable, and again everyone has a different experience. Other things that can be painful that surprised me: sneezing, coughing, laughing really hard, blowing my nose, yawning, taking a deep breath, going from lying down to sitting up and then from sitting up to standing.

Getting the drains removed, although incredibly exciting in the end, was not a blast. The PA (Physician Assistant) first removes the adhesive bandage holding the drains securely against your skin and snips the sutures that held them in place. I was told this would hurt like removing a bandaid. False. That adhesive is STRONG. It is a Mark McGwire circa 1998 steroids bandaid (Go Cards). You then take a deep breath in and on your exhale the PA removes one drain and then the other. Or in my case, “Oh, this one feels a little stuck” and it takes a few attempts. Even my mom, nurse Cheryl (she literally used to be a surgical intensive nurse in a university setting), almost asked the PA if she could sit down because she could see the drains snaking through my chest and causing my skin to gather where it was adhered to “something.” It is a weird feeling (you can feel the drain moving) and definitely hurt for me, although it sounds like my experience truly is an outlier based on conversations with others. Also, it was all over in five minutes. I’ll have gauze pads taped over the drain sites for the next 48 hours as additional drainage is common and I now get to start my at-home physical therapy to regain movement of my arms.

I’m continuing to alter between Tylenol and Advil and taking the Hydrocodone and Benadryl only at night. I have noticed that I have more pain and tightness with slightly more limited movement in switching to this but that will get better every day and I want to get off the narcotics.

I need to thank three amazing women–Jessica, Hilary, and Stephanie–for sharing their stories with me.  Their stories (below) helped me make the difficult decision to do the surgery, and also helped me know what to expect during the recovery.  Their willingness to share their entire story and experience–down to the most minute and gruesome detail– has been more beneficial than anything my surgeons and genetic counselors could have prepared me with.  All three are incredibly strong, kind, and positive individuals. You share a special bond having gone through similar procedures and everyone has this willingness and desire to pay it forward.

Stephanie – Breast Cancer Survivor/Bilateral Mastectomy

Stephanie was the first woman I spoke with.  Stephanie is a petite, beautiful, smiley, bad-ass attorney that was diagnosed with breast cancer at the age of 25 and underwent a bilateral mastectomy (she’s 28 now).  Stephanie also went to Wash U and was a year ahead of me.  My best friend from Wash U, Lisa, knew Stephanie and, when I found out I carried the BRCA2 gene, Lisa recommended I reach out to her.  About a year and a half ago I messaged Stephanie and she immediately replied that she’d love to share her experience with me.  We spent a few hours over sushi at Mirai (delicious) where she walked me through her story, starting with when she found out she had cancer all the way through how she was doing now.  She literally covered every detail; nothing was too personal.  It was an incredibly eye-opening and helpful conversation and I distinctly remember her saying something along the lines of “if your biggest fear or thing holding you back from doing the surgery is fear of the surgery itself, then you should do it. I wish I had that option where now I will always have the chance of a recurrence.”  Stephanie had her last chemo treatment EOY 2013 and is still doing great.  She got married this year and is kicking ass and taking names as an associate with a highly reputable law firm here in Chicago. She came over to eat and hang out tonight, and it was great hearing how she’s doing now and how her recovery process is going.

Jessica – BRCA Carrier/Prophylactic Bilateral Mastectomy

The next woman that I spoke with was Jessica, a BRCA carrier who underwent a prophylactic bilateral mastectomy in her 30s.  A good friend of mine from college, Ben, is Jessica’s cousin and put us in touch as he knew that she recently had the procedure and that I had scheduled mine.  Around mid-August of this year, we finally connected on the phone and ended up talking for a few hours.  At this time, Jessica  was exactly five weeks post-surgery and had just been cleared to do laundry and open her refrigerator door (those two facts clearly stuck with me).   Upon learning she was BRCA positive, Jessica knew she would get the surgery at some point and it was more a matter of when. She’s married with two little boys, so finding the right time to be out of commission for weeks had to be incredibly difficult. She also shared her full experience, thoughts, emotions, etc. She is now back and working out almost to her former full ability, although she described some exercises as being just a bit too weird of a feeling so she avoids them (e.g., push-ups), but she is doing great and is very happy she got the surgery.

Hilary – Breast Cancer Survivor/Bilateral Mastectomy

The last woman I spoke to is Hilary, who had low stage breast cancer and underwent a bilateral mastectomy in September 2014.  A good friend of mine from West Point, Sam, put us in touch.  Sam knew about my upcoming surgery, and when he heard that Hilary had undergone a similar procedure a year ago, he asked her if she’d be willing to speak to me. He described her as a “dominantly beautiful woman with an insatiable drive for success. Wife and mother of three who is commonly referred to as the ‘cancer ninja’, as she is a two time cancer survivor.”  We had been texting for awhile and finally synced up on a call about a week and a half before my surgery.  She also shared her full history and any pointers and advice with me in terms of what to expect pre- and post-op. She forwarded me some pictures of what it looked like a week out and then more recently which was incredibly helpful (I ended up texting her a picture earlier this week to see if something was normal and she was able to calm me down by showing how she had the same thing, totally fine). She has a blog as well which is pretty amazing, particularly to learn about her full story.

[Editor’s Note:  At some point in her life, Therese began referring to our parents as “Tom” and “Cheryl” when discussing them with others.  (When directly addressing them, she still uses “Dad” and “Mom,” respectively. 50% of the time.)  To correct this would alter the tone of this entry, so we’re leaving it as is.  Sorry Tom and Cheryl. This is from two days ago.]

This morning was better with more energy, less pain, and less tightness in my chest (as compared to yesterday, on average). Within two hours though I had a bad headache, the pain was back, my energy was down, and the tightness in my chest returned.  I thought the pain would be the worst part of the recovery, but actually I think it’s the tightness in my chest.  It’s hard to explain, but it’s like I can’t get a full breath; it’s pretty unnerving.  But apparently this is normal.

My aunt and uncle happened to be in town and came over to visit, which was really nice of them.  My aunt is a breast cancer survivor and shared aspects of her experience that I had never heard before, which meant a lot to me.  Going through this surgery without cancer was scary enough; I can’t imagine going through this after being diagnosed with cancer.

Highlight of the day: Tom Fox’s arrival.  Now I have a doctor and a nurse taking care of me.    We went out for a short walk (aka shuffle, with me looking like Randy from ‘A Christmas Story’ when his mom bundles him up to walk to school) of about twelve blocks. Once we got home, I started feeling not so hot: pressure, pain, headache. Plus now there’s this weird tingling sensation across the chest area. You know that feeling you get after your foot has fallen asleep and is starting to regain blood flow where it feels like pins and needles are all over your skin? It feels like that. I consulted Dr. Fox (hi Tom) who said that it’s normal as there are still nerve endings in there which were jostled a bit by increased activity.

My mom sent this picture out to a text chain that my family (parents, 5 kids, son & 2 daughters-in-law) has going with the caption, “My Lively Companions”…Cheryl and her jokes

I feel like my recovery has kind of been like a sine graph (nerd alert)…not too shabby then terrible and miserable and I want to go sleep. In general though, I think my recovery has been better than the average. I have pretty decent movement of the arms, even from the shoulders (less T-Rex arms than expected) and I have more ‘not too shabby’ moments than unbearable.  Yesterday I started to wean off the narcotics, switching off every three hours between Hydrocodone and 600 mg of ibuprofen. Every six hours I take an antibiotic  and in the evenings I take benadryl to help me sleep. It’s incredibly important (as stressed to me by everyone) to stay ahead of the pain so my alarm is set for every three hours, even during the night. I also was able to remove this Scopolamine patch from behind my right ear, which the anesthesiologist put on pre-surgery as a way to prevent nausea. I have my first follow-up appointments with both surgeons on Tuesday and am hoping I can get two of the drains removed.