Previvor Day

Part of HBOC week is Previvor Day, which is today! I would say happy Previvor Day – but that seems a little odd. On the one hand, being a previvor is a happy thing because it means you have a hereditary disposition to cancer but have to been affected by the disease. Although I feel so lucky that the BRCA test exists, that I found out I was BRCA2 positive in 2007, and had my prophylactic mastectomy last month – it is still really hard to take that gamble and have major surgery as a preventative measure.

I had my last expansion on Monday and it was definitely the hardest one so far. The appointment started off with me being told I was done with the expansions, but then my reconstructive surgeon noticed an indentation in the expander so she wanted to add another 100 CCs to my expanders. I really trust my surgeon and know she has amazing aesthetic results, so I decided to get the extra 100 CCs, knowing that I won’t be getting implants this large at my exchange surgery.

The good thing about the pain after my expansion is that part of it is because more sensation is returning, I’m not as numb as I was before. The bad part is that I had pretty bad back spasms the first day and my muscles are pretty sore. I know it will all be worth it in the long run and that this surgery brings my lifetime breast cancer risk from 87% down to about 1%, but it is still a difficult process at times. I start school tomorrow which I am definitely nervous about. I won’t be able to have all my comfy cushions and recliner and will have a long period of time sitting in a classroom chair. We also have a math test on the first day and it’s tough to study and retain information after Monday’s expansion. On the other hand, it’s good to get back to the swing of things. I know that starting school will make the time go by quickly between now and my final exchange surgery in December. I can’t wait for that surgery so I can have nice squishy implants instead of my turtle shell like expanders.

Being a previvor is a whole mix of emotions but I am so glad to be informed and to have taken charge of my health.

Hereditary Breast and Ovarian Cancer Week

Today marks the start of National Hereditary Breast and Ovarian Cancer (HBOC) Week. If you think you may be at risk for HBOC, FORCE has a great FAQ resource page here to help you get started.

As I’ve said before, testing positive for a BRCA mutation does not mean you need to have surgery. It does not mean you will get cancer. It does mean that you can receive annual screenings that will be covered by insurance and could save your life.

Below, check red flags that you may be a BRCA carrier. If these red flags sound familiar to you, please consider speaking with a geneticist about getting a BRCA test. It is a simple saliva swab test and the results can empower you to get the screenings you need to prevent cancer.

8 RED FLAGS THAT INDICATE A POSSIBLE BRCA MUTATION
(via Pink Lotus Breast Center)

1 – 1st, 2nd, or 3rd degree relatives – from maternal or paternal sides – with breast cancer before age 50 or ovarian cancer at any age;
2- Ashkenazi Jewish heritage (Ashkenazis are Eastern European Jewish from Germany, Poland, Lithuania, Ukraine and Russia, as opposed to the Sephardic Jewish population primarily from Spain, parts of France, Italy, and North Africa);
3- Any male relative with breast cancer;
4- Any relative who is a known BRCA mutation carrier (the child of a carrier has a 50% chance of inheriting the mutation);
5- Breast cancer in self prior to age 50;
6- Two breast cancers in self, any age;
7- “Triple negative” breast cancer in self;
8- Two or more family members with breast, ovarian, pancreas, prostate, melanoma, uterine, colon, and stomach cancers (this flag also captures possible non-BRCA inherited genetic mutations associated with breast or ovarian cancer).

Expansion #4

I had my fourth tissue expansion this week and it hit me pretty hard for a few days. It was the first tissue expansion since being able to lift my arms above my shoulders. So, right after being filled with 100 CCs of saline I lifted up my arms to pull on my bra and I felt a sharp pain in my muscles. Afterwards, I took painkillers which helped with the pain. So I spent time with my friend at home, she brought me lunch, and we watched some trashy TV. I felt good until the painkillers wore off and then I felt pretty weak.

I think I did too much – I have to remember that even walking the dog can be too much after an expansion. I feel much better now though. Luckily, I probably only have one more expansion or maybe even none at all. I’ll find that out on Monday so I’ll keep everyone posted!

4 Weeks Tomorrow!

I seriously cannot believe that tomorrow marks one month since my prophylactic mastectomy. As weird as this may sound (since having a prophylactic mastectomy is a pretty big picture decision) – I am normally not that way. Yes, I’m great at planning, but it’s sometimes hard for me to look at big picture things. Luckily Adam is the opposite, which is part of the reason we make such a great team. I am also not the most patient person in the world (once again, luckily Adam is way more patient than me). All of this info is to give you some background on why it is hard for me to step back and look at how far I’ve come in the past month. I’m trying to do more of that, because right now, I can see myself focusing on some of the negative aspects of the surgery rather than how far I’ve come. Maybe it’s because of the loss of my natural breasts and the current uncomfortable nature of the expanders.

So, let’s focus on some milestones. I started showering by myself for the first time last week. That is a huge step for me since it took 3 people to help me shower when my drains were in and 2 people until I could lift my arms above my shoulders. It was really nice to be able to wash my own hair (although my friends and Adam did such a great job before that)! I will no longer take for granted things like being able to shower. Ultimately, I think this whole experience will make me a much better nurse, especially since I want to be an oncology nurse.

Also, I drove for the first time this weekend! I was cleared to street drive at 2 weeks and highway drive at 3 weeks, but I didn’t feel comfortable until this weekend. My pec minor muscle is pretty sore so I was a bit worried, but I did great and even tried u-turning to make sure that felt okay and it did.

I’ve been off prescription painkillers for over 2 weeks! I only take painkillers now on the day of expansions, and next week will probably be my last expansion.

I started physical therapy last week. My range of motion is perfect on the left arm and only 10 degrees off on the right due to some swelling which will go down. My resistance is stronger than it should be at this point thanks to the personal training I did 6 days a week the month before surgery. I also have done 3 mile walks with Adam a few times over the weekend.

Finally, I had my post-op with my breast surgeon last week and from now on, I will see another doctor in her practice, since I am no longer high-risk for breast cancer. She said that as sad as she is to lose me as a patient (even though she is always here for me if I have questions), she is so happy I am now at less than 1% risk of breast cancer instead of up to 87%. I also will have a 6 month check-in with their office for a breast exam and ultrasound, and then only every year after that. No more yearly mammograms and breast MRIs, woo-hoo!! That is what really hit home for me more than anything so far and reminded me why I chose to have this surgery in the first place. Yes, there have been some dark moments in the last 4 weeks, but being in control of my health and being a proactive BRCA previvor is who I am at my core.

Yes, there are some weird things like my rock hard expanders feel super heavy when I lie down, I feel like I have a constant underwire bra on, and I am still not 100% independent, but I have come such a long way. I am medically cleared to start my clinical rotations on time in 3 weeks and to start up with class again next week. Thanks again to my support system, which really helps me to focus on the positive.

PT

I had my first physical therapy session today and it went well. I’m going to go twice a week and we will start working on strength soon. Today was range of motion evaluation and learning some exercises to do at home. I have some scar tissue buildup on the right side near my armpit (where they removed breast tissue – yes, breast tissue is also removed from your axilla aka armpit) so they showed me a massage that could help. Luckily, it’s one Adam can help with and only takes about 2-5 minutes. I also have 3 exercises to do at home and a self massage to hopefully make the expanders more comfortable.

My range of motion is good on the left side and only off by 10 degrees on the right, so things are looking good. I’m really happy I don’t start clinicals again for about a month so I know I will be ready by then thanks to physical therapy and my awesome surgeons and support system.

On Monday, I should find out how many more expansions I have left, which I’m excited about. They aren’t necessarily painful, but there is definitely discomfort that day and the day after – since they are stretching the skin and also the pec major and serratus muscle attached to the alloderm – so I’ll be happy when they are done. I’m also hoping my rock hard expanders feel more comfortable through physical therapy. I also get to look at pictures of boobs and decide on implants on Monday so I’ll be posting about that for sure!

I haven’t driven yet so Adam and I are going to try it out this weekend – I’ll blog about that on Saturday 🙂

3 Week Mark

It’s Rachel again! Back from my Benadryl induced haze. Thanks to Adam for his sweet blog post while I was busy dealing with my skin irritation from the tape. Thankfully, some cortisone, aquaphor, and aloe helped clear it up. I had another expansion on Monday and one of my friends from school was able to come. That was cool, because I think it’s a pretty interesting procedure to see as a nursing student, so I’m glad she got to watch. Plus we went back to my house and watched Bravo afterwards, which is always a plus.

The tissue expanders are rock hard and live up to their reputation of feeling like ski boots. It makes it very difficult to sleep but I’m slowly getting used to them. I should only have 2 more expansions left so I hope they settle in a bit more after that (although I’ve heard they never are truly comfortable). I’ve been reaching out to my community of friends who have had prophylactic mastectomies for advice and that’s helping. My in-laws came to visit this weekend and it was really nice to see them and we went out to dinner. Also, my mom went to multiple Redbox locations to rent The Other Woman for us to watch after my latest expansion, which was a fun distraction. Adam spent about 30 minutes trying to get all the remaining adhesive off me even though he was tired from work, he is such a rock (even more so than my expanders).

Today is the 3 week mark which is very exciting because I can lift my arms above my shoulders and can wear a non velcro bra (woo-hoo). I took an über cab to Nordstrom today and got some new wireless stretchy bras to sleep in.  I can also start light workouts but I’m waiting to see how my physical therapy session goes tomorrow before any cardio. So things are looking up and only 90 days until my outpatient surgery to switch the expanders to the much more comfortable implants (not that I’m counting or anything). There are some good things about waiting until December for my swapout. Most importantly, it will give me the best outcome for the final surgery. Also, I’ll be super busy with school so hopefully time will fly by. Also, Halloween falls into the time when I have my rock hard expanders in so I think I know what my costume will be this year (ps if you’ve never seen Mean Girls, rent it ASAP).

amy

#superhero

Rachel’s almost three weeks out of the mastectomy and she’s almost out of the woods.  Rachel’s pain is about 10 times better than it was this time last week and she’s way more independent (besides having to keep her arms below her shoulders – think arm positioning like John McCain & a t-rex, but in the most rockstar way imaginable).  She (and I) are now getting somewhat full nights of rest. #blessed #hallelujah

It seems like everyday now we’re celebrating new little milestones.  Like when Rachel put on her shirt & seatbelt for the first time since the surgery.  She can also now get settled on our couches and bed without help.  Rachel’s 2 hour excursions have spiced up too.  On Tuesday (less than 2 weeks out from the mastectomy), Rachel went to UCLA School of Nursing to meet with a faculty member.  She wore regular clothes and much to my surprise, put on a blazer for the meeting.  If I was her at this point, I would be a cross between a helpless puppy and Gollum.  Barely able to move out of bed – let alone planning the next academic years work as the Co-President of my graduate student association. And Rachel’s boobs are looking super healthy and, besides a sorta lumpy looking temporary expansion implants, barely look operated on.

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The whole ‘2 steps forward 1 step back’ thing is still holding up unfortunately.  The other night Rachel’s skin started to get really irritated around the tape that’s still on her from the surgery.  The next day it got way itchier and once I got home from work had broken out into full-on hives across her stomach and back.  Immediately after the itchiness started, Rachel began doses of Benadryl, which needed to be upped once the urge to scratch become too much.

What happened then (because Benadryl + other post-surgery meds = sleepy time), was Rachel getting totally zonked out.  Even after the tape came off yesterday at the surgeons office, the itchiness has persisted.  The good news is that the Dr.’s appointment was for her 2nd expansion.  That was super successful and the tape being gone has brought the irritation down, albeit very slowly.  As I write this, the incredible Rachel is now on her 16th hour of sleep out of the last 24 hrs.  Which is why you’re hearing from me again 🙂  Although if you are following FunkyGenes on twitter you’ve seen that she’s still tweeting away in the few hours she’s been up today.

The bottom line is I’m married to a beautiful superhero.  She’s done something remarkably difficult and extremely brave, yet in the most public way possible.  By sharing her story and engaging with a tremendous community of other previvors & survivors, and other storytellers she’s doing all she can for the cause of cancer prevention, education and advocacy. #mywifeismyhero

My Recovery p.4

It’s Rachel! I’m so happy that my mom and Adam were able to guest blog while I was in serious recovery mode. Tomorrow marks 2 weeks from my prophylactic mastectomy and I’ve come a long way. But, my surgeon was totally right when she said this recovery is two steps forward, one step back. Every time I overcome one pain or obstacle it seems a new one comes my way. I’m really excited for a week from tomorrow (the 3 week mark) because I will be able to lift my arms over my shoulders and I can wear a sports bra instead of this weird velcro surgical bra. I’ll also start physical therapy then.

I got the drains out last week which has made things a lot easier and I’m off my narcotic painkillers, just on extra strength Tylenol now. I finally slept in bed for the first time (instead of a recliner or couch) a few nights ago which I thought would be a big relief but has turned out to be quite a challenge. It has been taking a while to get used to how to comfortably lie in bed now that I have the expanders. They feel really heavy on my chest when I’m lying down and I’ve only had one expansion so far so I imagine it will get worse. I’ve also been pretty emotional like crying at things like finding a good incline wedge for bed, my dog watching over me, Adam helping me, and even crying if I laugh too hard because it hurts.

Now onto the good stuff, since I passed the 10 day mark, I am allowed to do short excursions. Last night, Adam and I went to a new theater called iPic and saw Guardians of the Galaxy. One of my friends who had a prophylactic mastectomy recommended this theater because they have reclining seats, pillows, blankets, and they deliver popcorn to you – the staff was so nice and accommodating. Basically the best possible scenario for seeing a movie post-mastectomy.  It was really nice to have a date night and the movie was awesome, as was the whole experience.

Most importantly, a special shout out for all the support I’ve received. So many people have reached out with their support and good wishes. I’ve had so many calls, texts, emails, Facebook messages, cards, flowers, and even edible arrangements. One friend even ordered food for us for 2 weeks from a home delivery service! Adam has been the best caregiver. It has been exhausting for him but he’s been so supportive and such a trooper. Also my mom has come by often and made food and helped out a lot. And my in-laws are visiting me next weekend from San Diego! My whole family has been checking in on me all the time, sending homemade cards and care packages. Adam’s coworkers have been checking in on me too, bringing me juices and even visiting me in the hospital. And so many friends from nursing school helping out with everything from visiting me at the hospital and lifting my spirits, watching bad Lifetime movies with me at home, helping with drains and dressings, and even helping me shower since it took 3 of us when the drains were in. I feel completely humbled and just want to send all my love and thanks.

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look, I’m blogging!

Rachel’s Recovery p.4

Hey everyone – things are going well and Rachel’s been moving steadily forward since our last post. Rachel’s energy is on the rise and she’s getting progressively stronger by the day. She’s been eating from a more eclectic menu, which includes cheese, salami & crackers and jook (Cantonese comfort porridge made by mom, Anna) – as opposed to pudding, apple sauce, toast and more pudding. She’s also sleeping more consistently – for periods of more than two to three hours. The Bravo viewing has remained steadily high and nearly constant (#teamvicky #whatishappeningtome).

We’ve also figured out ways to make the drains a little less painful. I recognize the necessity of these things, appreciate their importance to the healing process, yet hate them with a vengeance. They remain the main obstacle to getting/holding Rachel’s pain level lower than a three, which is currently my main mission in life. To accomplish this we’ve tried to keep to the exact pill schedule set out by Rachel’s doctors. This might seem easy enough in theory: take the pills on time and write it down on a chart. What’s not so easy, as anyone scheduling a bunch of doses for a patient knows is getting the timing right for ~20 pills per day, most of which need to be taken with food. Getting this right from 10pm – 7am is particularly tough for obvious reasons. Organizing all this jazz via Google Docs has super helpful. (If anyone’s interested hit up the contact section and we’ll share the template w/you.)

I’ve been able to grab much needed sleep when Rachel’s nursing friends come over. This is a luxury that I’m grateful for – yet getting less than 3-4 hours of sleep at time has been the norm for the past 2 weeks. Same for Rachel of course. At this point she’s got to wake up even when she’s sleeping comfortably in order to take her pills on time. We’ve played with moving non-antibiotic doses back a few hours – but at this hasn’t been helpful, Rachel just ends up waking up with tons of pain. So for now uninterrupted sleep is going to have to wait – and we’re counting down to the moment when the drains come out. This might come tomorrow, Thursday!

Going through this journey has opened my eyes to the complexities of serious medical recoveries, patients and their caretakers. I now understand that caring for people who have endured serious medical procedures/are very ill is tough, full-time work and can be emotionally jarring if it’s your loved one. Rachel and I spent 9+ months prepping for this procedure. We’re both organizers by nature with access to an amazing/highly skilled community and really supportive families. We recognize that this isn’t always the case and want to help folks on similar journeys as much as we can. With that said, in an effort to make sure all of Rachel’s posts on topics relevant to BRCA Education & Mastectomy Preparation are as accessible as possible, we’ve tagged the pages accordingly. Downline FunkyGenes will also have a section dedicated to providing resources for people facing down a mastectomy and/or a BRCA diagnosis.

One last note, we’re happy to report that Rachel received word from her doctor that her pathology report for the mastectomy came back clear. Even though this procedure was preventative, studies have found that in similar cases a surprisingly high number of pathology come back showing malignancy. Another big reason to be thankful.