I hesitate to share my physical side effects of this whole journey "in depth" for no two bodies, circumstances or journey are ever a like. I've tried to find the balance between the facts and my own personal experiences with out implying the same will happen to you if given the same situation, however, I've come to realize that it might be beneficial to share more about the physical side effects of this process. I know before I booked my surgery date I asked other 'BRCA- Prophylactic Double Mastectomy with Reconstruction' woman about their experiences and although I appreciated their honesty, I wanted to hear a little more about how they felt right after their surgery. It's no different then doing research about a state or country you may be moving to before you move, or finding out details about a company you may want to work for before a big interview. We "arm" our self with knowledge based on other peoples experiences, we sift through it and ultimately go through it our self creating another perspective to pass on. So I am passing on a few details that might help someone who is going to have this surgery, thinking about it or knows someone who is going to have it done. Again, this was my experience in which I found was different then anyone else I asked yet I believe still common enough had more people shared their post operative experience.
Here it is:
Having a double mastectomy with reconstruction hurts and it is hard, like f*cking hard and it's OK to say that even though I "chose" to take this preventative measure AND in no way regret my decision. It's hard but manageable and with every day I was healing, I knew I just took my risk of having breast cancer down from 87% to around 5%.
I woke up after the surgery, tightly wrapped and feeling like I could hardly breathe. I welcomed the oxygen tube blowing through my nose and tried not to move unless necessary. Unfortunately, I had to move. The IV that was keeping me well hydrated also made me have to pee, often. After trying to find the buttons that would move the hospital bed and then cursing the fact it was moving and with the help of my husband who never left my side, I got out of bed and ever so so slowly walked. At that moment my healing began. I was in the hospital for 3 full days and 2 nights. That's 3 days of shots in my stomach to keep blood clots away, breathing exercises through a special gage that kept fluid out of my lungs which was not fun since it hurt to take deep breaths and 3 days of hospital food that consisted pretty much of broth since I was vomiting. I was having problems with nausea from the anesthesia and vomited a bit. This continued after I left the hospital so a prescription was called in for anti nausea medicine which did the trick. I recommend asking for a prescription before you leave the hospital if you have a sensitivity to pain killers and anesthesia. I also had severe constipation from the morphine, and all the medicine that was being put into my body. I should have been taking stuff all along to help me "go" but the hospital staff some how missed that. I started on medicine for constipation a little late so I had HORRIBLE pain in my intestines for 6 hours, cramping and contractions that reminded me of labor contractions. So... anticipate constipation and take stool softeners with something that helps you "go" before the problem starts. I share these thoughts because I believe that with a little insight you can avoid some unnecessary pain, nausea and discomfort and ease your mind knowing what to possibly expect. You don't want to be dealing with these issues along with the double mastectomy.
Eventually weeks to months down the road, I could do most things I was doing before, driving again, walking faster and even exercising. Sleeping was tricky for me pretty much the whole time I had my expanders in. I had to lay either on my back or when on my side use a pillow or just make sure my arm did not rest across the side of my breast. They have pillows you can purchase that allows you to comfortably sleep on your belly and even get massages.
Overall I did well and never felt it was too much to handle. A month after surgery I was at my daughter's gymnastic class when someone over heard me talking to another mom about how my surgery went. The woman came up to me and said she was going to have the same surgery in a few weeks after finding out she was positive for the BRCA mutation and having already gone through breast cancer a year ago or so. I shared with her how well I was doing and gave her my blog. I ran into her a few months later after her surgery. She said seeing me 4 weeks after my surgery and how well I was doing and reading my blog gave her strength and perspective.
I may not be reaching 1000's of people right now but even a few makes it all worth it.
Share your heart, come from a place of love and be kind.
XO
Two weeks ago I found myself in line at the security check at LAX in route to Massachusetts to visit my family. Standing in my socks holding my airline ticket in one hand and a note from my doctor explaining why my boobs will set off the metal detector in my other hand, I took a breathe and walked through the scan. Yahoo- no beeps! Why may you ask am I sometimes setting off metal detectors? Welcome to my love/ hate relationship with my tissue expanders.
(There are different ways to reconstruct breasts after a double mastectomy. The process I'm about to explain was best for me and my body type.)
After my surgeon removed my breast tissue, a plastic surgeon came in and placed tissue expanders under my pectoral muscles. Tissue expanders are silicone bags with a port and a small magnet in the front of them that slowly get filled over time. This procedure is done to create a space for the final implants by slowly stretching the skin and chest muscles. Normally when woman go in for breast augmentation the implants are placed under the breast tissue but in the case of mastectomies, a pocket must be created. This is done by going under the chest muscles and also using a Acellular Dermal Matrix which is a skin tissue that comes from either a cadaver or a pig. My surgeon will be using Strattice which is the brand name for the pig tissue-no pig jokes please ;-)-oink oink .
About 2 weeks after my surgery in April, I went in for my first expansion. This is done right in the doctors office. He first finds the port by using a devise that detects the magnet then he makes a mark. Once the port is located, he inserts a needle into the port. He first extracts some of the blue saline that was put in the expanders during surgery to make sure he is in the right place, then he injects about 50cc's of saline in each expander. Besides feeling the needle going in and some pressure, the procedure isn't painful. For the next two days I feel achy and just took ibuprofen for the pain.
Overall, tissue expanders are just uncomfortable, ask anyone who has had them. I can't lay on my belly or collapse my arms to one side while laying on my side. Jumping jacks, jogging and even hugging feels a little uncomfortable. The top halves are as hard as steal making me feel like RoboCop Mom. While reading books to Teagan and Jordan they each sit in the nook of my arms and either bounce their heads around trying to get comfortable or push on the top of them laughing and saying, "Mom, can you feel this? - Can you feel this?" I take it all in stride and have laughed A LOT during this whole journey. Don't get me wrong, I am grateful for what will give me a pretty good end result considering I had both breasts removed but with that said I am jumping for joy knowing they are coming out this Thursday. My doctor wanted to keep them in for 6 months after my final expansion which would have meant having them in for 8 months but after my last appointment he noticed I rotated one. He has never seen that before and even tried to rotate it back (ouch) without success. So because the rotation will effect the "pocket" shape, they come out early.
As with any surgery I am a little anxious but my excitement to finally get my implants is overriding that emotion. The recovery I am told is about 2 weeks and a little longer before I start running and jumping again. I will let you all know how it goes as this part of my journey is almost completed. XO
In early May a Face Book friend privately asked me about how I got tested for the BRCA gene mutation, if I got a second opinion and if Myriad was the only company testing for it. He was taking a class that required him to listen to a New York Public radio show in which the Company Myriad Genetics was part of the topic of conversation. I was more than happy to reply which included, "no- this is the only company that does this test- so no I couldn't get a second opinion." I personally wasn't concerned about the second opinion since my family had been tested and were getting positive results as well but it did make me question why this was the only company testing for the BRCA 1 and 2 gene mutation. Myriad Genetics, a private biotechnology company based in Utah, controlled the patents on these genes. I found this strange because how can someone patent a human gene, they didn't invent it, it's part of the human body. Apparently nearly 20% of human genes are patented. It gives "rights to the inventors for their inventions in order to reward and encourage human ingenuity", says the American Civil Liberties Union. What I found to be interesting is that many researchers around the world were involved in identifying the BRCA1 and BRCA2 genes; most of them did not seek patents or did not enforce any patents obtained by their universities because they wanted research and testing to continue openly without exclusive monopoly rights.
This topic of conversation went all the way to the U.S. Supreme Court. Just two weeks ago on June 13th the U.S. Supreme Court unanimously ruled that the Myriad Genetics patent in the BRCA1 and 2 genes were invalid. The court stated "in this case...Myriad did not create anything. To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention."
What this means is that other companies can now test for the mutation. This will not only lower costs for the test but give people the option to have a second opinion and will possibly even give faster test results which in return saves lives.
Thank you to the people that made their voice heard and fought for this small human rights issue. It can be intimidating going up against "the big fish in the pond" especially if it is the unpopular vote in the room. Sometimes its about asking the right questions to spark the conversation to make a change. I myself am trying to be more aware of when to question and speak up and when to just let the current take me down the river for a nice ride.
I woke up to texts, emails and phone messages from friends and family last week telling me about how Angelina Jolie had a prophylactic mastectomy three months ago because of having a faulty BRCA 1 gene. At first I was surprised, then I felt excited about how her sharing this publicly will start to educate people about it and possibly inspire woman that have a high percentage of breast and/or ovarian cancer in their family to get tested. I just watched from the side lines, having just gone through it myself, the opinions from people on the radio, talk shows, news papers, and magazines- amazed at how quickly people now know what the BRCA gene is. One particular show that I watched I had personally written to months before trying to inspire them to do a show on genetic cancers but never got a response (go figure) so I am happy to see that Angelina inspired them to actually do it. Her sharing her story will not only help the people that may need to get tested but for the woman that already know they have the gene mutation. Before my surgery, when I was having routine mammograms, ultra sounds and MRI's, the technician's would first tell me that I was too early for my screening, that I just had one six months ago and that I didn't need to be there. I would then explain to them about the BRCA gene and what happens when it is faulty and how my doctor ordered the mammogram. Most times there was a bit of a language barrier but in the end they always understood "double mastectomy"and didn't even try to hide the look of horror on their face. Maybe now with such a public figure coming forward, more technicians will know about the gene and not tell them to go home.(hahaha)
When stars come forward with health issues and become an advocate for a cause I sometimes feel that information gets lost in the dramatics of it. In this case I heard people worrying about how they can get tested and if their insurance would pay for it. If you have a family history of breast and ovarian cancer, especially if they were under the age of 50 years old when they got it, then you have a "reason" to get tested therefore in most cases your insurance will pay for it. To put things in perspective- less than 1% of people in the U.S. have this mutation and only 10% of breast cancers stem from inherited genetic defeats so it is not a test that is necessary for everyone.
I do love that the media has made a point to emphasize that it was "Her Choice". If you are tested positive for the BRCA mutation it does not mean you have to have a double mastectomy. Like I always go back to, everyone has a different journey or "story" and at the end of the day you have to make choices that are best for yourself and your family. I'm glad Angelina shared her story and although I'm not famous I will continue to share mine- at least for now.
I wanted to give a quick update since it has been just over 2 weeks since I got out of the hospital. I am happy to say my breast tissue and lymph nodes they biopsied came back clear with no traces of cancer. Three days before my surgery date an MRI confirmed a very small lump on my right breast. I had the choice to put off my surgery (again) and get it biopsied or during the mastectomy I could have a sentinel lymph node biopsy where they remove 1 or 2 lymph nodes and check them for cancer cells. I chose not to put off my surgery and went ahead to have my lymph nodes checked. I am a little more sore and stiff on that side and do realize there could be complications from taking lymph nodes but in the end I felt like it was the best decision for me.
So.... I won't be getting breast cancer! I'm still processing that I think. Most of my energy has been about being in the moment with my healing- which is going well. I'm reminded each morning when I wake up that it's going to take time to heal from the inside out from such a big surgery. So I don't lift much, I rest a lot, take my pain meds and have had so much help- (which I am eternally grateful for. ) This part of my journey has felt more like climbing steep hills and reaching plateaus. I may have a few more hills to climb before I reach the end of this journey but thats ok because I feel strong and I can always rest on those plateaus. I have prepared myself so well like an athlete trains for a race or competition. My mind has been processing this idea then turned descision now for 2 years and I've kept my heart and lungs strong for years with cardio and strength training. When my surgeon came in to check my incisions, she was so pleased. I looked down through the bandages with her as she held them open to peak. I was surprised how clean and relatively small my incisions were and thanked her for that. She looked at me and said- that isn't me, that's you taking such good care of yourself for 41 years. And at that moment even though I had just lost my breasts, was in pain and was hooked up to many tubes and drains and "stuff", I smiled and new I was going to be ok.
It is the eve of my surgery. Tomorrow I will be having a double mastectomy with reconstruction. It's been an interesting journey since I found out about being positive for the brca mutation. So much research, processing, and reflection. Many tests, doctor appointments, finding the right surgeons and methods-so many details and decisions. And then there is the preparation for post operation-it certainly takes a whole village. So here I am only 7 hours before I have to be at the hospital and I'm feeling strangely calm. Maybe it's all the prayers and good vibes being sent my way or maybe its being so mentally prepared and sure of my decision. It's probably a bit a both...
Sigh...I'm good, feeling strong and ready. Let's do this! Tata Tata's!
A few weeks ago I went to a support group for people with the BRCA mutation or a family history of cancer. It was put on by a great national non-profit organization called 'Force'. I don't know why I have been resistant to support groups up until now. The thought of going although seemed like an ok idea, in the end used to make me shake my head and say, "No-that's not for me, I'm not the 'talk it out in group' type personality." I'm not sure why I am like this but it seems to be a strong personality trait I have had since I was little. I am happy to say I got over myself. I went to a meeting and was surprised with how the experience effected me in a positive way. I was surrounded by a group of woman of all ages, with this invisible common ground that was effecting us each in different ways and stages. It was both an informative and a compassionate meeting. I was left with information about doctors, what to expect after a double mastectomy, reconstruction options, made new friends and really just took in each and every one's story. Although it was a lot to take in, I didn't realize until now how thirsty I was for a group just like this. I don't know when I will be going to the next meeting but I do take comfort in knowing it is out there for me when I need it.
The next 'Force' meeting in Southern California is February 17th. You can go to the website for more information. www.facingourrisk.org
If you find yourself resisting something that you know will be good for you, like I was doing, then ask yourself why. Is it because stepping out of that comfortable box you are in makes you feel uncomfortable? If so then I say embrace it and step out. One small action can possibly be just what you need to get the ball rolling in your life for the positive. You never know how it will effect you or how you could be the inspiration that another may be looking for.
Force is FORCE is the only national nonprofit organization devoted to hereditary breast and ovarian cancer. Our mission includes support, education, advocacy, awareness, and research specific to hereditary breast and ovarian cancer. Our programs serve anyone with a BRCA mutation or a family history of cancer.
