INTRODUCTION – WELCOME!
This is the personal blog of author Emily Ford’s experience as a BRCA1 mutation carrier (MUTANT) and the choices she has made of how to handle it. She does not have cancer and has decided to take preventative measures. She had a prophylactic double mastectomy on April 28, 2015 and started her “immediate delayed” reconstruction with tissue expanders, or as she likes to call it “Redecoration.” Her final surgery was on August 25, 2015. She is 36 and inherited the mutation from her father. Without preventative intervention, her lifetime risk of breast cancer is estimated at 87% and ovarian cancer 49%. On her father’s side of the family, there have been 3 cases of breast cancer in women due to the BRCA1 mutation (one fatal).
It’s important to know that YES, fathers can pass on this mutation to both their sons and daughters. Each child of a mutation carrier has a 50/50 chance of inheriting it. Also, men that carry the mutation are at an increased risk of male breast cancer, prostate and colon cancers, although the numbers aren’t as staggeringly high as the breast and ovarian cancer risks in women with the mutation.
You may recall Angelina Jolie Pitt revealing in 2013 that she has the same mutation, and that she underwent risk reducing surgery. You can read Angelina’s announcement here. March 24, 2015 Update : Angelina has another preventative surgery.
Emily welcomes direct communication from you! You are invited to send her an e-mail: firstname.lastname@example.org
What is a BRCA Mutation?
BRCA1 & BRCA2 Facts by the National Cancer Institute
Genetic Testing for BRCA1 & BRCA2 mutations by Susan G. Komen Website
A great website with info on hereditary breast cancer is FORCE: Facing Our Risk of Cancer Empowered
Article on Prophylactic Mastectomy by Breastcancer.org
Article About Prophylactic Mastectomy by FORCE
Article on Double Mastectomy for women with breast cancer by Medscape
Article on Risk-Reducing Surgery for Breast Cancer by the National Cancer Institute
Article on Prophylactic Oophorectomy (removal of ovaries) by the National Institute of Health
Article on Prophylactic Oophorectomy by FORCE
Article on the Risk/Benefit Equation of Prophylactic Oophorectomy
Article on Prophylactic Oophorectomy by the Mayo Clinic
Article on the Long Term Health Risks of Oophorectomy
New ovarian cancer screening technique could double detection rates
Clinical Trials Cancer.gov
Article: Exercise Fights Cancer Tumors Directly
Post-Mastectomy Exercise Videos (Range of Motion) by MSKCC: Reconstruction with body tissue Reconstruction with tissue expanders Mastectomy without reconstruction
MY HEALTHCARE TEAM
I’ve had EXTREMELY POSITIVE experiences with all the members of my Tucson, Arizona healthcare team and I’d like to give them proper recognition here!
Breast Surgeon: Dr. Whitacre, Breast Center of Southern Arizona
Plastic Surgeon: Dr. Hurst, Hurst Plastic Surgery
Gynecologic Oncologist/Surgeon: Dr. Hallum, Arizona Oncology
Hospital: Tucson Medical Center
Imaging & Testing: Radiology Ltd.
My Healthcare Provider that helped me set everything in motion: Katy Hoeft PA, Desert Bloom
On December 30, 2014, I received word from my doctor that I tested positive for a BRCA1 mutation. I was 34 at the time. I’m publicly sharing my experience because I believe someone out there needs to see that this isn’t the end of the world, of life, of health, or of happiness. There are complex decisions to be made, but this is only a part of our life, not all of it. And, you’re not alone. Please feel free to read and share my blog. Don’t be surprised if you find yourself laughing, ’cause I’m pretty funny.
BRCA blog Entry: April 28, 2016
It’s been exactly 1 year since my first surgery! The double mastectomy was performed on April 28, 2015, at which time reconstruction was also started. The next 365 days would bring a second surgery to complete the reconstruction (August 25, 2015) and a debilitating illness (viral meningitis) from which I’m still not 100% recovered, but slowly getting there! Do I think the illness is related to the surgeries? No, I don’t have anything to suggest that (I mention this because there is still some controversy over the safety of silicone breast implants). The good thing about this past year is that I can rest easier knowing I’ve slashed my risk of breast cancer from 87% to below 5%. And, since beginning birth control therapy to lower my risk of ovarian cancer, and getting the CA-125 blood test and ultrasounds every 6 months, I feel I’m making the best choices for myself in terms of preventing cancer. This brings me to my current thoughts on being positive for the BRCA1 mutation: how will it affect my health in the coming years, if at all? This mutation elevates my risk of other cancers, although not as staggeringly high as breast and ovarian cancer. But what of the other kinds? My focus now shifts to general cancer prevention by way of a clean diet, ample exercise and sleep, and doing my best to reduce stress in my life. I have plenty of work to do in these areas, but I endeavor to meet these goals of reaching and maintaining optimal levels of health. And, as part of my journey, I have plans to become a resource for others that share this genetic condition. More on that soon!
BRCA blog Entry: January 9, 2016
Happy New Year! I’m a bit shocked that it’s been over 2 months since I last posted. So, let’s catch up! First, on the cancer prevention home front, my latest round of 6 month screenings for ovarian cancer comes with a good CA-125 blood test result (same number as last time, 13) and an all-clear ultrasound test. YAY! ALWAYS CELEBRATE GOOD TEST RESULTS! It’s just something good to do :0)
In other news, 7 weeks ago TODAY I came down with a sudden raging fever with violent shakes and chills. I suspected it was the flu, but what happened next was worse. The fever lasted 3 days. When it stopped, I was left with ALL of these: vertigo and dizziness, whole body shaking, stiff, painful neck, hand tremors, relentless headache, extreme fatigue, muscle weakness, anxiety attacks, and the worst things of all: I couldn’t sit for more than a few seconds, or walk more than a few feet, without the chilling sensation that I was going to lose consciousness. After a trip to Urgent Care, the Emergency Room, and a new doctor, the diagnosis was suspected viral meningitis. Folks, this illness is no joke. I did a lot of research on my symptoms as I experienced them. When I finally started researching viral meningitis, I found that many articles seem to say that viral meningitis is “no big deal” in comparison with bacterial meningitis. While that may be partly true, viral meningitis is nothing like having the flu or a cold. You’ll feel better after days of those — progress in healing from meningitis is measured in weeks. For example – It was around week 3 that I was able to sit up straight and not feel like passing out, and was able to walk small distances. And now, at week 7, I’ve almost got all the strength back in my legs — almost — and still have a bit of vertigo and neck pain that remain. A phenomena called viral syndrome can happen after this viral attack in which phantom symptoms remain despite the initial infection being over. There are numerous blogs where people share their experience of still having ghostly symptoms weeks to months to years after the initial infection.
SO to keep things brief, the healing continues but I’ve been feeling mostly normal — still got a little way to go. ANYHOW – the lesson here is take good care of yourself and when you DO get sick, don’t be a JERK to yourself and try to tough things out. Let yourself get enough rest and proper nutrition — and social support if you need it. I was really worried about missing work because I could not have physically done it if I had tried. So what did I do? I missed work and rested at home, and hoped for the best: I hoped for my health to return and I hoped to still have a job when it did. If you lose a job due to health reasons, you will find another one. BUT if you lose your health — ain’t nothin’ can replace that, so take good care of yourself!!!
BRCA blog Entry: October 27, 2015
Easing into my new strength training program with 7 pound dumbells, I tried almost every exercise I could think of that works the arms and chest. Prior to my surgeries, 7 pounds wouldn’t do a darn thing for me, but after so long hardly using my arms at all, I’m already feeling the 7 pounds! My arms are like noodles now — a sure sign of a great workout. I felt a little pulling at my sides near the incision sites when I raised the dumbells over my head, but otherwise everything felt great! Because scar tissue can continue to form for 1-2 years after a surgery, keeping things moving will help prevent that. Movement is WD-40 for the body, keeping joints and muscles pliable and strong!
The road to recovery can seem long, but it is ever progressive. Keep going. One foot after another. Take that step, no matter how small, and celebrate each step as the true victory it is!
BRCA blog Entry: October 25, 2015
It’s exactly two months after the second surgery. Now that I am in the clear to resume all physical activities, today I decided to test out how running feels, after being away from it for 6 months. In a word, it was pure freedom.
Freedom. To return to a body that is healed and ready to move again. To be able to get back to improving my physical conditioning again. To be free from dysfunction, pain, and restriction. There is so much freedom in movement, and we don’t always realize this until our movement becomes restricted — either by an illness, an injury, a surgery, or simply the brutal effect of every day life as we sit too long at our desks, slouch out of exhaustion, or deny our bodies the exercise and conditioning we truly need to be strong and healthy.
In experiencing the temporary yet sometimes severe restriction of movement that accompanies a mastectomy and reconstruction, my eyes are wide open to the needs of those that go through anything that robs them of the physical freedom of movement. This experience has awakened me to a calling that I’ve always had, but didn’t know how to focus it until now. I’ve always been drawn to the field of fitness and health, but never had a clear vision of what I should do about it. Now, the calling is undeniable, and incredibly simple: to help people heal by way of the physical body. Ideas are developing in my mind, accompanied by a surge of passion that will some day be used to reach people in need of healing.
How you choose to see something makes all the difference in the quality of your life — that’s what I truly believe, because I’ve seen happen in my life and in lives around me. If you choose to see a challenge in your life in a positive light, you can use the challenge to experience growth and to improve the quality of your life. You can likewise see a challenge as the worst thing ever — and you’ll be right, it will be. Why not decide to look for the positive aspect of the challenge? Your life will be all the better for it. That doesn’t mean things won’t be at times difficult, and it doesn’t mean you won’t experience negative emotions. You will. But I believe if you remember to look for what’s good in any situation, you’ll find it.
BRCA blog Entry: October 21, 2015
With October being Breast Cancer Awareness Month, I wanted to provide this link as a reminder to all women how to “be aware.” Click this link for a good to-the-point article.
On my home front, today I had my 8 week post-operative appointment. The doc says things are healing well, and I’ve been cleared to begin strength training the arms and chest again. YAY! While I celebrate good news, I must also express my sincere gratitude to God and family for carrying me through this experience. I am so grateful that I had the chance to take steps to prevent the hereditary breast cancer that has struck several women in my family. SO grateful. I am also aware that so many women won’t have that chance, and so many are currently facing the disease. To those women and their families, I wish you sustained strength and fortitude to get through the difficult times, faith and positivity to get you through the REALLY difficult moments, and may the Spirit of Peace be your constant companion.
BRCA blog Entry: October 16, 2015
Wow, has it been a month since my last post? Yes. My, how quickly time passes when “life” is happening. It’s been a bit of a whirlwind working the new job as I await the major healing milestones to come and go – the 6 week “all clear to run again” and the 2 month “all clear to start strength training again.” Actually, the 6 week mark passed last week. Busyness with work and a mean cold knocked me down and I was oblivious to the milestone happening. That’s okay, because now I am reminded of the long-awaited 2 month mark coming NEXT WEEK! I’m hoping for the best possible outcome as I make plans to ease back into a regular workout routine. I think the key to getting back into any exercise program – after surgery or just a long time off – is to ease into it! Plan things out, start off gently, and don’t put too much pressure on yourself to go from zero to sixty too fast! Experiencing this process of getting back to “real” exercise after these surgeries will give me excellent insight into what others may go through in similar situations. Hopefully, that will make me a better trainer one of these days in the not too distant future!
BRCA blog Entry: September 13, 2015
I’m getting antsy-antsy-antsy to get back into a full-force exercise and strength training routine. I’m barely 3 weeks post-op, and I’m feeling so good that I just want to GO GO GO! But I can’t yet — got to let my body heal first. So for now, I’ll be walking and starting back into my lower body exercises — that means SQUATS, people! Hehe. I’m really curious to see how things will go when I do start with the upper body again — will strength training be comfortable? Will it be as effective since my chest muscles have been cut and re-positioned? Hopefully everything will be fine, but I’m ANTSY to find out! That’s all for now — just wanted to give an update on my exercise status. Today I did a walk and some range of motion exercises, I’ve noticed some extra tightness in the chest muscles from sitting down during my work days on the new job. No problemo – I’ll need to compensate by adding more stretching and moving around more.
Today I leave off with a quote by Marcus Aurelius: “Very little is needed to make a happy life; it is all within yourself in your way of thinking.” Even in times of turmoil, you can emanate positivity by changing the tape playing in your head to say good things, positive things. Have the expectation that everything is going to work out for the best, for your benefit, and you can have happiness anywhere you go, no matter what is happening around you! You can do it!
BRCA blog Entry: September 10, 2015
So the blues didn’t last long at all. I think it was just a momentary fallout after the final surgery. The new job is going very well, and despite being a little tired as I’m still getting used to the new schedule, I feel great. I’m sleeping very well — and comfortably! Rolling around like it’s nobody’s business, so I’m very pleased with how things are healing. I’ll have a 4 week post-op appointment this month, and I expect to present my doctor with a report of FEELIN’ FINE!
Meanwhile, I’m still formulating my plan to become a trainer for women that have had this procedure — and I may take it farther and create something that I could train people dealing with cancer too. I’ll continue to think on it and develop things as I go, really looking forward to making something happen out of this. The goal would be to give people access to the healing and quality of life-enhancing properties of the right kinds of exercise/physical therapy, and nutrition.
BRCA blog Entry: September 2, 2015
Today I had my 1 week post-op appointment. My doctor basically said things are looking good, healing well, and I’m to go back in 3 weeks for another check-in. Everything is great! So why am I experiencing a sudden wave of downtrodden feelings?
This entire surgical “adventure” I’ve been on since deciding to get the preventative mastectomy & reconstruction is over now. It’s been about 9 months if I include testing positive for the BRCA1 mutation, plus the momentary him-hawing over what to do, the decision to do it, and now, 1 week post-op it’s all done. In these 9 months I’ve needed to pump all the positive energy I could muster into my every day life to cope with it all, and to face things that were scary with a smile and faith that everything was going to turn out great. Which it did. I’ve kept the positive, high energy gas pedal floored all this time, so to speak, and it got me through to the other side. What now? Where do I put this energy?
Another way to describe this feeling is that I’ve been in Fight or Flight mode all this time — with Fight mode being predominant. Flight mode may have reared its ugly head a couple of times when I emotionally “faceplanted” and broke down crying like a baby. But the coping mechanism took up such a large piece of internal real estate. The emotional preparedness. The physical preparedness. The intellectual preparedness. All geared to Fight for one common goal — and now, goal achieved, the Fight is over and I must relax and move on.
I find it a bit odd and a bit funny that I’m feeling the loss of something that was such a big deal for a concentrated amount of time. It’s kind of like I’m standing around scratching my head, going “Huh? It’s over? Are you sure?” Time flies with all things, and this was no exception.
I started a new job this week. I wasn’t sure if it was wise to start it the week after surgery, but given the facts about this second surgery being a much “lighter” one than the first, I figured I’d be okay. Once again, I was right, and everything worked out perfect. The new job brings some stress, as most new jobs do, but I’ll adjust, like with anything else. Perhaps the new job will take some of the “Huh, what?” out of things and give me something new to focus on. It certainly does during the day. But when I get home, I’m kind of scratching my head again. I’m not complaining that the surgical process is over — not only over, but has gone more perfectly than I could have imagined — but with its finale comes the required shift of energy and focus.
I’m also feeling the urge to bring together my experience in a way that will help other women in the same boat as me. So I’m really thinking on that. Perhaps that will be the natural progression of my experience — it will bring me to a position of being able to give back and help others in need of it. Because after all, I created this blog to not only be a catharsis for myself, but to provide others a window into one BRCA1 mutation-positive woman’s life choices regarding the issue. I’ll continue to think on this, where I can take this and in what ways I can return God’s favor on me to others, for giving me the most amazingly positive experience and perfect results for this serious health issue.
BRCA blog Entry: August 28, 2015
I am floored. Floored! Wow. Wow. Wow! The more I look at my “final results” the more amazed I am. To achieve such a natural result after everything that’s been done to the breasts is basically amazing. I’m stunned. And very, very happy with them! They’re about the same size-wise as I was naturally, but a bit fuller which is nice. They’re nice and soft — SO much softer and more comfy than the tissue expanders. You don’t realize how hard the expanders feel until you get them taken out! Hehe. And I don’t feel the nerve pain that I was having on one side anymore. So comfy. I’m already off the Tylenol – in fact I don’t think I took any yesterday. I have just a little bit of muscle soreness but that’s it. I’m moving around like it’s nobody’s business – hehe so I have to remind myself to still use caution with certain things because I still need to heal from this surgery. I’m really happy with this. The surgical adventure is over, moving on!! HAPPILY!! I will continue to post updates on my recovery. What I’m most looking forward to is getting back into a good exercise routine that will include strength training the upper body – arms, chest. It will be interesting to see if the mechanics of my body are different as a result of having my chest muscles cut and repositioned. We shall see, but I think everything is going to work out great!!
BRCA blog Entry: August 26, 2015
Yesterday’s surgery was a complete success. I couldn’t ask for a better experience. I was pretty nervous once I checked in, but listening to my music, breathing deep, and yes praying kept me sane. Although it was delayed by about an hour and a half due to the previous surgery running longer than expected, it was still the ideal experience. Excellent, friendly staff all around the Tucson Medical Center. The quality of care was top notch. I enjoyed the friendly conversation with my Anesthesiologist and O.R. Nurse when I told them I was there for new boobs, and a new liver. The new liver being a joke of course!
I already feel more comfortable having the soft implants in and the tissue expanders out. The only real problem I had with the expanders was on one side where either the expander or scar tissue (or both, who knows!) was hitting a nerve that made it difficult to sleep lying down flat. I don’t feel that nerve pain now, so I’m hoping the surgery did the job! Soreness-wise, I’m sore like I lifted heavy weights yesterday, mostly under the armpits! I don’t have feeling in the skin of the breasts, so I can’t even feel the incision sites – fine by me! I’m taking Tylenol as needed, no narcotics just as I was able to avoid them with the previous surgery too.
Waking up from surgery this time seemed easier too, and I was able to dress myself and hold a minor conversation with the recovery room nurse as opposed to the first surgery when I couldn’t keep my eyes open hehe. Felt a bit nauseous on the ride home, but it went away quickly. Today my sister took me to breakfast and then we got some groceries at the store, so I did plenty of walking! Home now and feeling a bit sleepy so I’ll take it easy the rest of the day. I can tell this is already a much easier surgery to recover from, and I am so thankful for that and for the fact that it went well and I’m on the road to recovery. My surgical journey to prevent the hereditary breast cancer that runs in my family is over and I look forward to healing and meeting the rest of my life with health and vitality!
One more thing – I have to keep my bandages on until tomorrow night, then I can remove them and also take a shower. SOOOO I’m really curious to see what the final result looks like!!! I was actually really pleased with how they looked with the hard round tissue expanders, so I KNOW they’re going to be awesome…hehe! I ended up with two 440cc silicone implants – the “gummy bear” type which, yes, feel like big gummy bears, and are supposed to create a very aesthetically pleasing result with the type of reconstruction I had. Also they are supposed to collect less scar tissue because they don’t have a smooth surface to them, more like they have a textured surface that helps things stay in place and keeps the scar tissue from forming. Scooby Dooby Gummy Bears!
BRCA blog Entry: August 24, 2015
Tomorrow is the final implant surgery! The tissue expanders will be removed and soft, silicone “gummy bear” implants will go in. It is said that this will be a much faster, less painful surgery and recovery than the first, and that the silicone implants will be much more comfortable than the tissue expanders. I fully expect this to be an excellent finale to this very fast 4 month process! I’m looking forward to seeing the final results too – hehe.
I haven’t been nearly as nervous about this surgery as the first. I know what to expect, and it is the conclusion of the process. It helps that I got to spend the past week with family I hadn’t seen in too long, and that helped keep my mind off things. I started getting a bit nervous yesterday, but I feel better today because I know getting surgery tomorrow is a very positive thing for me. Ready to close the book on this part of my health prevention strategy. I’m so grateful that I’ve had this chance to prevent breast cancer and stay healthy. Ready to rock and roll!
BRCA blog Entry: August 2, 2015
Let’s talk scar tissue. Scar tissue is part of the healing process, and the body makes it to replace and repair injured skin. It’s made of collagen, and it can cause different kinds of symptoms/side effects including: nerve pain, numbness, stiffness, pain, lumpiness, and even changes in the skin’s appearance. With mastectomy (with or without reconstruction) these are all possible.
There are ways to manage scar tissue issues, including massage, physical therapy, and sometimes surgery. I read where scar tissue can continue to form at surgery sites 1-2 years after the surgery.
So here’s my experience with scar tissue thus far: after my third and final saline expansion, I started experiencing increasing pain in different areas of both breasts. I thought it was from the expansion and that it would go away after things stretched out a bit: some of the pain did, but much of it lingered, and actually made it difficult for me to sleep on my back and sides again. I had to start sleeping propped up again, just like after the surgery. I was a bit perturbed, but then I researched scar tissue and believe that was the issue. SO I took to implementing my own physical therapy – and Scooby Doo, it’s worked like a charm.
In addition to starting back in with the range of motion exercises that I did after surgery, I kicked up the intensity of my regular exercise routine. (I now believe I should not have stopped doing the range of motion exercises, because the movement could have prevented the scar tissue from forming). I started exercising harder, using more of my body, and even threw in 30-60 second spurts of light jogging during my walks. The result has been astounding: the increased exercising and range of motion exercises have significantly reduced the pain I’ve been having from the scar tissue, and I’m back to sleeping almost normal. Almost, hehe. It’s progressing in the right direction, so I’m happy with it. When I go in for my second surgery, the doc will remove any scar tissue he sees, so that should take away any remaining paining hehe. I plan to hit the exercises consistently after the second surgery to prevent the formation of more scar tissue.
Physical therapy works! I am so amazed and thankful that something I love to do — exercise like a maniac — has actually helped me regain movement and function fast and furious! (NOTE: You don’t have to “workout like a maniac” to get excellent results from therapeutic exercises!) I highly recommend the physical therapy route to anyone that has had, or is having, this surgery. Move it, move it, move it and you’ll be amazed at the miracle of exercise’s healing effects on our bodies!
BRCA blog Entry: July 22, 2015
The results of my 6 month pelvic ultrasound screening are fantastic: no cysts on either ovary, and it’s a 100% completely normal exam. Huzzah! I think this calls for a SECOND Happy Dancing Kitty! I’m very happy with this. There’s always a moment of dread when getting these screening tests done — that fleeting thought of “What if they find something bad?” Perhaps as time goes on and I get used to these tests, I won’t keep having these sneaky thoughts. This was only my second round of preventative screening (for ovarian cancer that is) so hopefully it gets better with time. I will certainly find out! So thankful for clear test results. And, my final breast surgery will be on August 25, to get the tissue expanders taken out and the soft implants put in. Looking forward to that! It will have been a fast 4 month process from start to finish, and it’s gone darn well. All in the name of prevention, of which I’m so thankful I had the opportunity to take preventative steps to keep myself healthy. Thankful, thankful, thankful!
BRCA blog Entry: July 9, 2015
I had my 6 month checkup this week: pelvic exam and blood test for CA-125 levels. The results are great! Normal range for CA-125 levels is said to be 0-35. 6 months ago, my level was 27. Now it is 13. The biggest difference between now and then? I hadn’t started preventative birth control 6 months ago. Hmmmm! Could it be that keeping a lid on the ovaries and keeping them quiet makes for happy CA-125 levels? Well, that’s precisely why I’m taking birth control as a prevention strategy. Next week I go in for the pelvic ultrasound and I have a theory: I’m betting that my ovarian cysts have shrunk in these 6 months due to the birth control…. let’s see if I’m right — will report with the results after next week! Hehehe.
BRCA blog Entry: July 6, 2015
Captain’s Log, star date 07062015. 4 days ago I noticed a pretty large red spot on one of my incision sites. I had also been experiencing some moderate pain on that side when lying down. RED ALERT? I called my doctor Friday morning and he started me on antibiotics, and asked me to come in today so he could see it. Friday night I started feeling feverish, but by Saturday I was feeling better as the meds kicked in. I admit, I was filled with dread for a few days, worried that I’d have to have this tissue expander removed so the infection could heal before proceeding to the final implant surgery. But, according to the doc’s evaluation, I shouldn’t have to as long as the infection clears up with the antibiotics. He’s still arranging for my final surgery date.
Whew! I felt very relieved leaving that appointment. In addition to cheering on the antibiotics – they’re already doing their job because the pain is less and overall I’m feeling better – I’m calling in all the spiritual help there is and thanking God that he will restore me to health. I believe – truly – that I will be, and I will heal with no further complications. In fact, I’ve felt so good this evening that I started cleaning and straightening some things up. In this endeavor, I put on my tunes – hehe – specifically I’ve been replaying Michael Jackson’s “Wanna Be Startin’ Somethin'” which has an amazing uplifting effect! Oh, and if you have pets that like to dance — they’ll love goof dancing around with you to this music! My sister’s doggies all got involved in the tomfoolery that was our victorious singing and dancing while we cleaned in the kitchen!
The next time you’re feeling down, defeated, depressed: put this song on and pay attention to the final lyrics that convey triumph over opposition and true love and acceptance for yourself – as referenced here:
Lift Your Head Up High
And Scream Out To The World
I Know I Am Someone
And Let The Truth Unfurl
No One Can Hurt You Now
Because You Know What’s True
Yes, I Believe In Me
So You Believe In You
BOOM! Thanks Mike!
BRCA blog Entry: June 25, 2015
Just passed the 8 week post-surgery date. Yesterday I went to the doc for my third and final saline expansion injection. I’m very happy with the size and shape result, so I told my Doc that I’m ready to schedule the second surgery, which could be in 3-4 weeks – that’s when the tissue expanders will be replaced with the soft silicon implants. Looking forward to getting that done so I can move forward from the surgeries and Doc appointments from this year!
BRCA blog Entry: June 11, 2015
6 weeks (and 2 days) post surgery. This week I noticed more mobility in the lateral movement of my chest – meaning I can cross my arms over my chest and allow it to “fold in” with greater ease. This also translates in being able to lay on my sides! I’m a side sleeper and it hasn’t been comfortable to sleep on my sides since surgery – but the discomfort is nearly gone and I find myself automatically rolling onto my sides when I sleep. Ah, finally! Meanwhile, I continue walking and doing leg exercises to maintain fitness. My legs are coming out stronger than ever from this!
I believe one more expansion will get me to where I want to be, it is scheduled for June 24. After that, if I’m happy with the size I’ll be able to schedule the exchange surgery. OH and the Jurassic World picture is because my super cool sister and bro-in-law may be taking me to see it this weekend. RAWR!
BRCA blog Entry: June 2, 2015
5 weeks post surgery. Today I had the second saline injection for the expansion process. I have a noticeable amount of muscle soreness from it, which should go away tomorrow or so. My doctor cleared me to resume running!! Still no weights or strength training of the chest area though. I’m cool with that – gotta be safe and make sure things heal as they should. I go back in another 2 weeks for the third expansion — I’m thinking 1 or 2 more of these and I’ll be ready for the second surgery, which should be in July or August. Cool! As for the running, I may give it a go this week, depending on how it feels.
BRCA blog Entry: May 31, 2015
If someone told me I’d be ballroom dancing 4 weeks after surgery – hehe – I’m pretty sure I would have raised several eyebrows. This weekend I had the chance to attend and Author/Reader event in Phoenix. Since the event is mostly centered around Romance writers, the event always has a “Man of our Dreams” pageant. About half a dozen nice young gentlemen run in the pageant. So, somehow this weekend I managed to talk to one of them – a ballroom dance instructor – and we struck a deal that if part of the pageant was a talent show, I’d be his volunteer to demonstrate the dancing. I was excited, never having done that before, and having pipe dreams of being on Dancing with the Stars. It didn’t even dawn on me that I’d be moving around – arms moving above the head, etc. – until after I talked to him. My stomach caught as I was thinking about it later: can I even do this? Is my range of motion even good enough? Would it be painful? Is this a safe idea? WELL… turns out, there was no need to worry about anything other than how bad I must have looked in front of the 75 or so people in the room. It was fun – VERY FUN – and there were no complications — again, except my unfortunate lack of skills hehe.
SO the moral of the story: yes, life continues after surgery, the body heals, the spirit rages on.
BRCA blog Entry: May 26, 2015
Today marks 4 weeks post-surgery. This past week I wanted to start some leg exercises, so I found a good video that I’ve done twice now. I highly recommend it! The only differences are, in the video they use dumbbells and at the end there’s a jumping squat. I can follow the exercises in the video and modify them by not using weights and not letting my feet leave the ground (NO JUMPING!). Click here for a link to the video – it’s online and free!
The state of the union otherwise: the tightness is way down, I think the range of motion exercise video I’ve been doing every day is responsible for that. I can now reach up to the top shelf of cabinets and get stuff down. I’d say range of motion is restored to about 80%. I still move my arms slowly when reaching for things, and I haven’t lifted anything heavier than the recommended 5 pounds. Don’t plan to either, until I hit 6 weeks post surgery. Even then, I’m not going to train my chest muscles with weights since I’m still waiting on a second surgery. I go for 30 minute walks almost every day. The range of motion video has loosed up my chest enough to allow me to walk normally now – before, the tightness kept me from being loose and freely mobile. Lots of progress in these 4 weeks.
BRCA blog Entry: May 21, 2015
I discovered some excellent videos on range of motion exercises to do post-surgery. All are from MSKCC in New York. I posted these in the Links above too. Click here for exercises after mastectomy with tissue expanders. Click here for exercises after mastectomy WITHOUT reconstruction. Click here for exercises after mastectomy with reconstruction with body tissue.
I find the video extremely helpful (I do the one for mastectomy with tissue expanders). Nothing hurts, at times I feel tightness or pulling, but the video tells you how to manage that – and this video is improving things very quickly!
BRCA blog Entry: May 20, 2015
Today I got the first saline injection into the tissue expanders. I was a bit apprehensive about this because I didn’t know exactly what it would feel like. So I was pleased when it turned out to be a benign experience. So how this works is, the Doc (or trained medical staff) uses a magnet to find the injection area of the tissue expander. Then they put a small needle through your skin into the tissue expander site and begin filling it up with saline. I didn’t feel the needle on one side, and felt it just a little on the other. As the expander began to fill up, I felt it in terms of a tightening sensation. Not painful, not uncomfortable. And we stopped when the tightness began. We do a little at a time to keep this process pain-free. I’ll go back in 2 weeks for the second injection, and so on until I’m happy with the size, then we’ll schedule the second surgery for the implants.
I admit I felt a bit like a science experiment today, probably because this was the first time having the injection. Next time I’ll know what to expect. Piece of cake. Oh, and IT’S ALIVE! IT’S ALIIIIIVE!
BRCA blog Entry: May 19, 2015
3 weeks post-surgery. The tightness from the tissue expanders lessens every day. I noticed quite a “give” in my chest muscles beginning last week, which tells me the expanders are doing their job: expanding things! You may want to know what it’s like to have the tissue expanders in: it depends on what I’m doing. Sometimes I don’t feel them. Other times it feels like wearing a tight bra. I’m still being very careful about what activities I’ll do. Nothing jarring, not much twisting of my upper body, no chest stretches, and no over-stretching of my arms especially above shoulder level. AND I’m not lifting anything heavier than my laptop. I’ve been sticking to walking and range of motion exercises for now.
The incisions are healing well and most of the bruising is gone. I can already tell that my “final results” are going to be great!
Tomorrow I go in for the first injection of saline to start filling up the tissue expanders. Will report on that.
BRCA blog Entry: May 11, 2015
Almost 2 weeks post-surgery. Feeling good! I’m planning to do 2 mile daily walks with appropriate range of motion exercises for my arms/shoulders. Later this week I’ll see how some lower body exercises feel. I’m also back on my multi-vitamin and probiotics, which I take (in addition to eating yogurt!) to help mitigate the effects of taking the antibiotic for the surgery. You know what they say about a healthy “gut” – ’tis a good thing HAHA!
Today I have words of gratitude for my family and their support. My sister (with whom I currently reside) had the job of being my caretaker and has done excellent. I know from experience it’s not easy taking care of an adult when ill or otherwise physically compromised, so good job sister! And I think they all can relax now that we have almost 2 weeks behind us and my family sees that I’m doing well. My parents live in different states so I know it’s been hard on them worrying about me from a distance. So, thank you everyone for your support and encouragement. Onward, everyone!
BRCA blog Entry: May 10, 2015
12 days after surgery, and I just got back from a 2 mile walk. Huzzah! I’m posting this because I think it’s important for you to know – if you are considering or just had surgery – that there IS life after surgery, and you WILL get back to feeling good! Take it slow – trust the healing process. Our bodies are amazing in how well they do self-repairs! It also helps to look at points beyond surgery if you’re thinking about having it and are anxious or scared about it. Yes surgery is a big deal – but it doesn’t have to be “The Big Bad Wolf.” Keep your thoughts positive, make plans for before, during, and after your surgery, and relax and give things time to heal.
BRCA blog Entry: May 7, 2015
Had my first followup visit with my breast surgeon today, in which I was given a report of my surgical pathology: all clear! During surgery, they send off a biopsy of the tissue to be checked for cancer, an excellent precaution to be extra sure there weren’t any cancer cells lurking around. So my results are all clear. ODE TO JOY, it’s playing again! Tell me you can hear it! Hehe.
I celebrate being breast cancer free. We – me and my doctors and healthcare team – WE successfully prevented breast cancer. This is monumental. This is why genetic testing exists and this is a textbook example of effective cancer prevention.
I am reminded that many people won’t get a report as good as mine. Many will cross into the realm of “I have cancer.” To those people and their families: you have my heart. You have the strength and courage to fight this foe and come out victorious! Years ago I was engaged to a young man that, before I met him, had been diagnosed with a rare genetic cancer. He initially received 6 months to live, but ended up living 10 years with it. During the final 4 years of his life, I was a witness to his unwavering determination and strength as he battled cancer. His message was this: NEVER give up. NEVER stop fighting, and most importantly CHOOSE TO HOPE over all else.
I want to put more words of gratitude out there for my dad. He got himself tested for the BRCA1 mutation last year, so we could use his results to determine if I needed to get tested. When his came back positive, he began a campaign with me to make sure I got tested. He even paid for it. He was persistent up until the day I finally scheduled it. Thanks to his persistence, thanks to how much he loves his daughter, I was able to take evasive action against breast cancer so we don’t have to worry about it anymore. So, once again: Thank You Dad!
I’ll leave off with an interesting article on a possible advancement in ovarian cancer screening. This is the next thing I will need to decide on: do I have my ovaries removed? I’m much more conflicted over this, due to my questions of long-term quality of life and safety of removing ovaries at my age. If doing so opens me up to increased risks of heart, bone, and brain disease, I would much prefer to take birth control (believed to reduce risk of ovarian cancer by 40-60%) and be screened for ovarian cancer over having them removed. Hopefully we’re getting closer to effective screening methods: New ovarian cancer screening technique could double detection rates
BRCA blog Entry: May 6, 2015 (PM)
Can you hear it? The Ode to Joy is playing! OH okay, maybe it’s only in my head. My doctor removed the drainage tubes today! YAY! He said everything is looking good. What did it feel like when the tubes came out? I didn’t feel anything on the left side. On the right side, I felt minor discomfort and slight sting on the skin because it was a bit sore from having the tube hanging there since the surgery last week. No problemo, piece of cake!
A note on the drainage tube removal: it’s normal if you have some “leakage” when they came out. I had a little from one side and a lot from the other – but within an hour or two it was done. So you may feel like the bucket on the left at first – no worries! You’ll be the bucket on the right in no time.
When I got home from my appointment, I had lunch (to include cotton candy ice cream) and lay down on my bed FLAT on my back – ahhh, relief! It felt great. It’s amazing how valuable our natural state of health is – when we are pain-free and condition-free, we cruise along like it’s nobody’s business. But when we find ourselves on the “other side” of health – my, oh my – what we wouldn’t do to return to a pain-free unencumbered physical existence. Funny how that works. (I just googled how to spell unencumbered – turns out, I got it wrong the first time HAHA!)
In 2 weeks I’ll go back in for the first saline injection to start filling up the tissue expanders. Tomorrow I meet with my oncological breast surgeon that did the first part of my surgery as a followup.
8 days after surgery I’m feeling great and full of hope. I have minor tightness from the tissue expanders and at the incision sites, but all is well. I’m happy.
BRCA blog Entry: May 6, 2015 (AM)
Here’s a picture of a Borg in case you don’t know what I’m talking about. I liken the experience of being hooked to drainage tubes and a pain ball to being a Borg — all the tubes and so forth. It fits, eh? In surgery, you go to sleep a normal human, and wake up like this rather unpleasant fellow here. HAHAHA!
Dr. appointment in 2 hours – will they remove the drainage tubes? Will I become human again? If not, so be it. Resistance is futile anyway. Star Trek humor – hiyo!
BRCA blog Entry: May 5, 2015
It’s been a week since the surgery. Nothing new to report today. I eagerly await my doc appointment tomorrow because hopefully the drains are ready to come out! The fluid in them meets requirements for removal so I am guessing they will. They leak a little at night when I lay too flat. I can’t wait for them to be out so I can lay flat again and move about more freely! It ain’t easy being a Borg HAHA!
BRCA blog Entry: May 3, 2015
Monkey feet. Yes! It’s kinda been funny to use my feet to pick things up from the ground – a piece of clothing, a dog bowl, and I even used my monkey feet to unstop the drain in the shower (requires 2 monkey feet in a standing position, use caution!). I’ve also done my fair share of carefully squatting down to get things on the floor, so that works too!
The glue from the tape that had been on my stomach and sides to hold the pain ball tubes and drain tubes in place started giving me a rash, so I removed the remainder of the glue today, it’s helped a lot. The tape on the drain tubes wasn’t totally holding them to my body — they’re actually stitched in place! And since I know there are probably 2 miles of drain tubing on the inside I don’t worry about them getting pulled out on accident. They are cumbersome and annoying, but necessary to expedite the healing process. I go to my followup appointment with the plastic surgeon Wednesday and hopefully he’ll remove them.
Another thing I didn’t mention before: about 2 days post-surgery I started getting burning eye attacks! All of a sudden my eyes would start burning like someone threw gasoline in them. It lasted less than a minute, then everything was fine. I drowned them in saline which only helped a little, and used some protective eye drops – those things didn’t prevent the attacks though. And my nose would start dripping – like it was some sort of wicked allergy attack. I’m guessing the burning may have had something to do with the ointment put in my eyes during surgery? I can’t really know – the important thing is, I’m pretty sure it has stopped now! Thank goodness.
Haven’t taken any Tylenol since yesterday around noon, feeling good pain-wise, basically none. There is some tightness along the incisions and where the tissue expanders are, but it’s not painful. The soreness in my neck and back are markedly decreased today, I credit this to doing the range of motion exercises and walking. Today I increased my distance which felt great, even got a little sweaty in the hot Arizona sun – but it was an easy, slow walk, I’m not doing anything to compromise proper healing.
On the other side of pain, discomfort, and other aspects of the compromised body lies healing, relief, and pleasure. I’m headed straight there! Health is true wealth.
BRCA blog Entry: May 2, 2015
Feeling less Borgish this morning after unhooking the pain ball! It wasn’t painful but it also wasn’t pleasant (OK none of this is hehe). I pulled out about 6 inches of tubing from each side of my chest. The tubing was really small so I barely felt it. Then, I took a shower for the first time since Tuesday – boy did I stink! And ohhhh did the shower feel wonderful! I was cautious as to how I washed my hair, pretty much bent over to do it. But the warm water and soapy soaps felt great.
My neck and shoulders are pretty stiff this morning, from awkward sleeping position. Had some leaking from the left drainage tube where it enters the skin – seems to be doing that at night when I sleep. Will run it by the Dr. on Monday. Onward.
BRCA blog Entry: May 1, 2015
I have very little pain today. Surgery was Tuesday afternoon. Wednesday I was really sore. Thursday the soreness was cut in half. Today is Friday and I hardly have any pain. Actually more sore in my back and neck from sleeping on an incline.I did take off my bandages today as instructed. It looks like World War 3 happened on my chest – the situation is quite a situation! But I expected that – bruising, the incisions, leftover yellow-orange coloring from the surgery. Plus with 2 drainage tubes coming out from my sides and the skinny tubes attached to the pain ball coming out from my chest – maybe I look more like a Borg from Star Trek or a human hooked up to life support in the Matrix movies. Yeah it’s a little disheartening to see myself in such condition – but I remind myself that this is temporary. When I’m all healed and have the permanent implants in place, things are going to look wonderful.
I’m moving around more but still being careful not to use my chest muscles yet – not while the drains are still in place. I want things to heal up fast so I can get them out hopefully next week — for the love of Keanu Reeves, I want the drains out! They’re annoying and OK sightly disturbing HAHA! First thing’s first: tomorrow I should be able to remove the little tubes from the pain ball myself, so that’ll be one less thing to be hooked to me.
Since I didn’t take any narcotic pain medicine or muscle relaxers my brain is fairly clear, but it’s not 100%. And I’m still napping quite a lot. So I’m taking it easy and not really doing much with the brain – hehe- except minor things like writing this blog and making the difficult decisions as to what movie to watch next. That’s my kind of predicament!
This afternoon I did some light range of motion exercises that really loosened up my neck and shoulders – quite a relief. Then took a circular stroll in the hot sun in the back yard – hey, it’s a start! It felt great – made me want to take off running… but I must wait a bit for that! Less napping today than yesterday. Tomorrow I’ll take out the little tubes from the pain ball and detach it – looking forward to being less Borg!
BRCA blog Entry: April 29, 2015
The surgery went well! My doctors were able to successfully spare the outer skin. They checked the inside ducts of the nipples for cancer and found none. They still sent the rest of the tissue off for biopsy just to be sure nothing was hiding from the mammogram and MRI – as is standard practice in this case.
The entire process at the hospital went perfectly. My sister was there to wait on me and take me home. I fell asleep just as I scooted onto the operating table and woke up when the nurses were dressing me to leave! I thought, aren’t I supposed to be awake first? The only snag was I got really nauseous and got the dry-heaves, they gave me a heaving container to use just in case something came up – and it eventually did (yech). Hehe – but I was REALLY groggy and kept nodding off to sleep while they got me to my sister’s car. She talked to me on the way home but I didn’t hear any of it, I was out of it! So I came home sleepy and attached to some things: first, I have 2 surgery drains in (yech!) to help prevent infection and reduce swelling, They’ll stay in until the “drainage” meets the required amount. Also – I have a pain ball! It’s literally a ball filled with non-narcotic pain medicine that automatically dispenses into me through some method I can’t figure out yet – and I’m not willing to look at my bandaged area yet — hehe so somehow this pain ball dispenses medicine.
I’ve been eating light foods today – white rice, crackers, and some fruit, and drinking water and 7Up. My pain level isn’t unbearable – it’s like being sore from lifting heavy weights for the first time. I’m taking Tylenol in addition to the pain ball and hopefully this regimen will suffice because I don’t want to take the narcotic pain meds — I want my brain to be clear! It’s still a bit foggy though from the surgery but that’s okay, I know it’ll pass.
I am SO relieved the surgery is over and now I can begin the healing process! Next week I have followup appointments with both of my lovely surgeons. Then I’ll start getting the saline injections to begin the reconstruction process. I expect it will take anywhere between 2-4 months for this to be complete and to get the final implants in. I’m relieved that I don’t have to worry about getting breast cancer now.
Getting into and out of bed has been challenging because normally I’d use my arms and chest muscles to do so — but I did this several times this morning and it caused a lot of drainage so I figured out a better way: to get OUT of bed, I tuck my legs in and roll to the side and throw my legs over. That uses a lot less chest muscle than using my arms. To get IN bed I actually step up onto my bed and walk to the spot I want to sit, then I sit right down! This uses NO chest muscles and works pretty well!
So glad I had this done. And I can’t wait to see the final results in a few months too, I have faith that it’s going to be wonderful!
BRCA blog Entry: April 28, 2015
BRCA blog Entry: April 27, 2015
T’was the day before surgery, and all through the house, a creature was stirring – a dog, not a mouse. HAHA!
Today I picked up my prescription for *DRAMATIC MUSIC* some sort of narcotic pain med. GASP! I’m actually planning NOT to use this at all. I’ll stick with Tylenol so long as things permit, consarn it! (that’s an old word for dang it).
OH and the guided meditation music that I found and put into my iPhone is WONDERFUL. It’s relaxing, positive, and is geared specifically towards pre and post surgery mental preparation. Absolutely great at lowering my anxiety levels.
So I’m ready for tomorrow. Got my bedroom stocked with Dvd’s, herbal supplements, prescriptions, and pillows. Finishing laundry today since I’m not supposed to do that kind of stuff for a while afterwards. My anxiety level is lower today than it was this time last week. I think listening to the guided meditation has helped, plus I’ve resolved my emotions to work for me instead of against me: I do this by having faith in this process, seeing it as a positive thing because I’m actively preventing cancer, and feeling grateful for the chance to protect my health.
I know my family members are probably really anxious about this. I feel a bit sheepish that I am the source of angst for them — but that’s what happens when you love people, we worry and concern about each other. So for my family, just know that I am going to be okay, I am not suffering from any of this, it’s just an inconvenience that will pass. I have complete faith in all of this, and I’m using it as a springboard to follow my dreams with even more energy and passion. Calm seas never a seasoned sailor make — or something like that! I’m grateful to have family that loves me no matter what. My family is a group of angels that have enriched, saved, and inspired my life and I couldn’t ask for anything better!
BRCA blog Entry: April 22, 2015
Met with my plastic surgeon’s office today to go over post-surgery items and sign some paperwork. Basically, I’ll wake up from surgery with several drains in, which will help reduce swelling and risk of infection. Drains are supposed to help facilitate healing too. It won’t be fun, but it’s important. Got my first followup appointments scheduled for May 6 & 7 with each doctor.
I had a LOT of anxiety today – even more so AFTER my appointment. I’ve not had the ability to focus on work this week – funny because I had planned to get some hardcore writing done! But I decided to take it easy on myself — my mental faculties are focused on preparing for next week, so I’ll let them be. I managed to work on some other things that didn’t require as much focus or strategic thinking!
To help with my anxiety today, I went for a nice run in the sun. Afterwards, as I expected, I felt LEVELS better! And still do tonight as I write this before bed. Such a nice feature to exercise is that it can act as an instant and lasting mood-booster – and anti-anxiety/depression remedy with GREAT side effects instead of harmful ones. Super cool.
My project tomorrow will be to hunt down some guided meditation audio files, or meditative relaxation music, to put on my iPhone to help me relax now and after surgery. Cool!
BRCA blog Entry: April 21, 2015
So I’m experiencing some pre-surgery anxiety — but it’s not what you might think. It’s not the surgery itself – I do not fear it or the recovery period! I expect there to be some degree of discomfort and pain especially at first. That’s okay, it will be dealt with as it comes. Piece of cake. But I’ve spent most of today really sitting with this feeling of anxiety to figure out where it’s coming from. After a bit of reflection, I’ve pinpointed the source.
The source is this: I’m concerned about the impact this will have when I decide to date again. **DRAMATIC MUSIC!** Yeah – I’m “worried” about what “his” reaction will be and I haven’t even met him yet. Aren’t our brains silly sometimes! After determining that this is the cause of my anxiety, I’ve been quick to remind myself that I am happy, whole, and confident on my own. YAY! However, some day I’ll want to add another dimension to my life in the form of a relationship, and that’s where I’ve “inserted worry” regarding this surgery and its aftereffects.
Much of the research I’ve done on this has shown me that the results of the type of reconstruction I’m having turns out beautifully. And I truly believe it will – I have faith it’s going to be great. Not only do I prevent breast cancer, but I expect to have beautiful results as well. I truly believe this. I just need to quell that worrisome voice, the one saying “what if we get rejected because of our scars, or because of what we chose to do?”
I retreated into my room today to meditate on this, and to pray. I pray and talk with God daily, and my faith is stronger than ever. I trust God with my life. I hear from him and I’m guided by him. So when I feel myself slipping into emotional turmoil I make it a point to stop what I’m doing and turn inward, and turn to him. Today I am reminded of my faith in him and his plan for me. YEAH I want to meet my Superman one day. The real Superman isn’t going to be bothered by this. If he’s meant for me, it won’t matter. Until then, I will remember my faith and relax in God’s hand, knowing he has me safe and secure.
So there. Pre-surgical anxiety explained: it’s not the surgery itself, it’s my fear of being rejected because of it. Fear, worry, and doubt don’t belong in my mind, therefore I release them knowing everything is going to be okay.
I’m going to assume many women share this fear of rejection, and/or body image issues regarding mastectomy. Maybe you are already in a relationship, or you’re married, and you’re worried this surgery is going to turn your partner off or they will reject you when it’s done. Or you’re single like me and still want to “relationship” some day. So I would like to encourage you to carry on with your decision(s) on how to best manage your health. Do what’s best for YOU first, and have faith that everything else is going to work out as it is meant to. Be strong, my friend. It’s going to be okay!
Tomorrow I go to the plastic surgeon to go over things, will report on the appointment. Until then!
BRCA blog Entry: April 20, 2015
1 week + 1 day out from surgery date (April 28). Starting today, I’m stopping my multi-vitamins and other supplements. I’ve read that the extra vitamins can have a blood thinning effect and it’s a good idea to stop taking them a week out. I also found something that suggests eating lean red meat this week will help prevent excess bleeding in surgery – since red meat has coagulating effect (probably why it’s not very healthy to eat it so frequently!) Also stopping the use of Ibuprofin (I don’t take Aspirin) and today was my last consumption of caffeine until post-surgery. Let’s see, what else! OH yeah, today is my last day consuming added sugar too – due to its inflammatory effect, I won’t be consuming any added sugars in preparation for the surgery.
I’m keeping my exercise routine going, running 3 days and strength training 3 days. Strong going in = strong coming out!
I read a cool article that suggests “training” for a surgery like you would a sporting event – meaning, eat the right foods, get the right exercise, heed warnings about what medicines not to take, etc. so that your body and mind are prepared for it. I’m no stranger to training for things so this fits right in with my way of preparing.
Wednesday of this week I go in to the surgeon’s office to go over everything for next week. I want to ask again how long the surgery should take and when the heck I can start doing my squats and lower body exercises afterwards! Hehe.
BRCA blog Entry: April 13, 2015
2 weeks out from surgery date (April 28). The increase in exercise and anti-inflammatory foods is having a NICE effect – my fitness level is already improving with NO extra soreness. HUZZAH! This 6 day exercise schedule totally behooves me, so I’m going to make it my new standard from here on out. After the necessary healing time post-surgery, I’ll be working my way up to 3 days weight training, 3 days running. Also seeing another nice side effect of this new schedule: it’s whittling my waist. Scooby-Doo!
Thoughts on the 4-6 weeks post-surgery when I won’t be able to exercise my upper body: I’m gonna do squats and lower body exercises, something I don’t do much of now. BUT this will be the perfect opportunity to focus on the legs and the bum!
About the upcoming surgery: I am completely relaxed about it. I do not fear it. I actually welcome it because it means I won’t have to worry about getting breast cancer. That is a GREAT thing!! I have my post-surgery eating and activities scheduled to maximize healing. Another good thing: I’ll have the down time to do some hardcore writing!
BRCA blog Entry: April 6, 2015
I’m about 3 weeks away from my surgery date (April 28) so I’m making some changes in my diet and exercise plan in preparation for it. First, I’m increasing my exercise. I normally run 2-3 days a week and strength train 1-2 days a week. For the next 3 weeks I’m going to be sure I hit 3 days of running and 3 days of strength training. Research suggests that going into a surgery strong will help me come out of it strong. My body will be able to better handle the stress of surgery if it’s strong and nourished. As for the diet, I’m cutting down on inflammatory foods, which I had already been doing. I’ll increase my protein – from sources like fish, eggs, poultry, and nuts. I’ll also increase my intake of good fats, fruits, and veggies. I’m a believer in the benefits of whole grains so I’ll continue to get my grains each day too. Protein will help my tissue heal faster, and an anti-inflammatory diet will only benefit recovery as well. Strong! Committed!
BRCA blog Entry: March 29, 2015
Houston, we have a surgery date! Tuesday, April 28 is the big day. On this day, the breast tissue will be removed and the tissue expanders (balloons!) will be placed beneath my chest muscles. Then, over the next few weeks, the expanders will be gradually filled to my desired size, after which I’ll have the second surgery to receive the permanent implants. Cool! I’m really glad to have the date scheduled, it’ll give me the ability to plan my work and activity schedule. I’m going to miss being able to run and strength train during the healing period, but I’ll give my body the time it needs. Gonna do this right!
BRCA blog Entry: March 24, 2015
Today I want to make a post about Angelina Jolie Pitt’s announcement in the New York Times that she had the prophylactic oophorectomy. I am so thankful to her for sharing these private details of her life, including how she arrived at her decision. Angelina is using her position as a very public figure to help women – like me! – navigate this process. How amazing that is! I can say with certainty that I draw strength from her.
To Angelina: thank you, thank you, thank you! And, way to go! Here’s to your -our – good health, peace, and happiness! :0)
BRCA blog Entry: March 23, 2015
Today I met with the plastic surgeon in charge of my breast reconstruction process. As with the rest of the medical professionals in Tucson, I very much liked him and appreciated his kindness and professionalism. So here’s the plan: I’m choosing the “immediate delayed breast reconstruction.” Now you say, “Humminy-wha?” Ok this is what that means: the first step of the surgery will be the oncologist breast surgeon removing all breast tissue. Then, during the same surgery, the plastic surgeon will place a tissue expander — basically a balloon! – and fill it partially with saline. Then they’ll sew me up and surgery will be done for that day. Then, over the course of several weeks to a few months, I’ll visit the plastic surgeon’s office where he will inject more saline into the balloon until we reach a size that I like. At that time, I’ll go in for another surgery to have the balloon removed and the permanent implants put in place.
You may be asking the same question I was asking: why can’t I just have implants put in at the same time the breast tissue is removed? The answer lies in the skin and tissue health of the nipple. I said it – NIPPLE! Basically, with my surgery I’ll be keeping my outer breast skin and nipples (this is technically called skin and nipple-sparing surgery). The oncologist will basically hollow out the inside of my breasts. This leaves a pocked of space. It also removes the direct blood supply line going to the nipple. So, my body will have to adjust and start sending blood to the nipples in a round about way. If we shove an implant that’s the same size or larger right in there, it could interfere with my body’s ability to properly heal and learn to send blood to the nipple, and there’s a risk that the nipple and skin around it could die. So, that’s why this tissue expander method is the best method for me. Also, It should be less painful than having full sized implants put in immediately during the first surgery because the skin and muscled won’t have to stretch beyond their means all at once. Also, I shouldn’t have to spend the night in the hospital with this type of surgery, which is always a plus.
For about 6 weeks after my first surgery, I’ll need to scale back on my exercise and activity. That’s ok, I know the time will pass quickly and I’ll be back to exercising soon enough, and I want to give my body all the time it needs to heal and adjust to our new way of life. Most likely, when it comes time for the permanent implants, I’ll go with a gel-type implant. I’ll blog more about that when the time comes.
What now? Well, my plastic surgeon and my breast surgeon will coordinate dates so we can all come up with a day that works for everyone. I would like to have the first surgery done during the last 2 weeks of April. I maintain a very positive outlook on this. I am very happy that I have the chance to take these surgical steps to prevent breast cancer. I will post an update when I get my surgery date scheduled.
I love my life. I have never been happier, and this experience, while significant, is just a part of who I am. I see this process as an indication that I am taking life by the horns and making sure my body stays healthy so I will be able to energetically participate in this amazing journey of existence!!
BRCA blog Entry: March 13, 2015
Today I got the results of my breast MRI: All Clear! Whew. I did not have a reason to suspect there would be anything, but I found myself experiencing a moment of terror just before getting the results. That little voice saying “What if they find something?” decided to start wreaking havoc in my mind. So I tried to remind myself to stay calm, I can handle anything it is, but most likely it will be fine. And it was.
But it really got me thinking about those of you that get a different result. It got me thinking about the people who actually have to hear “we found something.” That cannot ever be easy to hear, and I can only imagine how it makes them feel. So I take this moment to thank God for my clear test result and to anyone that gets a different result: I am sorry for your pain, but stay positive, and know that I and so many others stand behind you as your strength. Together we can get through anything. To your good and improving health!
BRCA blog Entry: March 11, 2015
My appointment with the plastic surgeon is set for March 23. There we will discuss the reconstruction process. I am interested in immediate reconstruction with implants. Based on the research I’ve done, this seems like the best option for me.
I feel very fortunate that I have the chance to take steps to prevent cancer and maintain my health. The whole point in getting tested for this genetic mutation is to have the option to do things like have preventative surgery in order to prevent cancer. I DO NOT want cancer. I’ve watched cancer end people’s lives. I’ve buried people that had it. So yeah, if I have the chance to prevent it, I’ll do it. I am still unsure as to the overall safety of having the prophylactic oophorectomy done at my age, and I continue to research the subject. But the only option (currently) to significantly reduce my risk of breast cancer is to have the mastectomy. So I’m all in on this one.
As far as my life goes, and the issue of feeling conflicted about having children: I’ve never been one to say “Oh, I can’t wait to have kids!” That was never me. Granted, I tried when I was married but due to “unexplained infertility” nothing happened. I felt a sense of loss from that, but I often wonder if I wasn’t just reacting to my biological clock and other societal expectations that when women reach a certain age, they’re supposed to have kids. At this point, I really don’t see getting pregnant as something I want to do. It’s not due to being single either – it’s just not something I am planning for. For the first time in my life, I have clear-cut goals and dreams related to my career, and I am SO excited to be working on some amazing projects. In the future, if I were to get involved with a man with children, I would love them as my own. I am also open to the possibility of adoption! But to go through the pregnancy process? It’s just not on my to-do list. That brings me to this BRCA deal: I think I would make the decision to have the oophorectomy but only if my overall health doesn’t suffer for it. The research is all over the place from what I can see, on this issue. So I don’t think it’s time for this surgery yet — there’s more to be learned first.
Since I know there are women that still want to get pregnant and have children, let’s talk about that. So you’re a confirmed carrier of the BRCA mutation, and you want to do everything you can to prevent ovarian cancer, yet you still want to have children. You’re going to need your ovaries for that! The options in your case include waiting until you’re done planning your family/pregnancies to go on birth control or to have your ovaries removed, or having your eggs frozen until you’re ready to attempt pregnancy via in vitro, meanwhile going on birth control as a risk-reduction method. Freezing your eggs will run you at least $10k, and the in vitro process I believe costs about the same. So you’re looking at some expense there. Are you dealing with infertility? I know that can only make things feel harder. Take heart, and be sure to discuss all your options with your doctor. Remember that the kind of doctor you choose really does make a difference with your experience. Doctors can disagree on major issues, so finding one in alignment with your life goals and dreams will work to your advantage. Their bottom line is to do what is best for your physical health, but your emotional and psychological health are just as important, so keep that in mind when making decisions about what is best for your life.
These are big decisions and they are very personal. Each individual must come to their own conclusion about what choices are best for them. What can you live with? What are your life plans? What is important to you? Tough stuff, so take your time and really think things like this through. And remember – this is not your whole life, it’s simply one part of it. Do your best to manage this issue just as you manage other kinds of life issues, and don’t forget to keep living and following your dreams!
BRCA blog Entry: March 9, 2015
I successfully navigated the process that is the MRI test, and I must say – what an experience! The imaging place I’ve been going to for these tests is remarkable, for one. The staff there are amazing, experts at their jobs and at patient care. So, to the Radiology Ltd. crew in Tucson, AZ, I say Huzzah and thank you!
The MRI process: change into gown. It opens in the back. (Oh man, is it drafty in here?) Sit down at the IV chair (you can always tell a chair by its needles…!) get the IV in the arm, with a quick and painless saline vein flush (“Ah, refreshing,” said my vein!) Go into MRI room, spot large tunnel and hope there’s also a ball pit to swim around in (after crawling through the tunnel… that’s what tunnels are for, right?) Lay on stomach, on human tray disguised as a massage table (put face here, arms there, and let the boobs hang out and enjoy the breeze (snicker, snicker). MRI tech puts headphones on me with music (yay!) then retreats to the safety of her observation room. She says through my headphones “Here we go, are you ready?” to which I reply “Yep!” I feel the human tray slide into the tunnel (oh this is kind of fun, like a really short amusement park ride!) The MRI tech tells me how long each picture will be, mostly between 2 and 5 minutes each, for a total test time of about 20 minutes. “Hold still, here we go!” The machine is pretty loud, but the music in my ears helps drown it out. This reminds me of a really messed up massage session. I’m on the table waiting for the relaxing massage, but instead the table moves around a bit and the machine makes loud red-alert sounds akin to “Danger! Danger, Will Robinson!” Seriously, some of the horns or whatever they are, sound like the government just raised the country’s terror alert to HOLY CRAP! And finally, at the end, the banging noises came along with some shimmying of the bed. I giggle at that, well no – I imagine giggling, I’m not supposed to move! – because it’s like FINALLY, I was waiting for the massage action to start! Alas, it wasn’t that kind of massage, just the machine jumpin’ around as the test ended. I can see how some people feel like freaking out during a test like that. But if you tell yourself to relax and be curious about the entire experience, I think that will help you through. And going to your mental “happy place” will only ease any discomfort you’re feeling. My happy place consisted of thoughts of all the films I’m going to make, all the people I’m going to meet, and all the amazing things I’ll experience in the near future. Oh, and yes I talked to Jesus and thanked him for giving me his peace. As they say, through Christ I can do anything. For me, that is an absolute truth.
So while I await my Gadolinium-induced super powers to manifest, I feel pretty good after the test. A bit tired, but I don’t notice any side effects. That’s good, I mean, becoming a superhero doesn’t require pain, right?
Next steps: meet with plastic surgeon. As long as the MRI results are good, I expect to be able to schedule a surgery date. Moving forward!
BRCA blog Entry: March 5, 2015
MRI is scheduled for Monday March 9. Get an IV with Gadolinium contrast. If I’m lucky, lightning will strike during the MRI. It will activate the properties of the Gadolinium and voila: I will be a radioactive superhero! Like, maybe I could be Gadolinium Girl? Yeah! Okay, and what would my superhero power be? Let’s think logically about this: Gadolinium is a silvery-white, malleable, ductile rare-earth metal found in combination with salt. This can only mean one thing: my superpower will be the ability to fly, appearing as a silver streak, while leaving a trail of salt behind me. Sweet! Sign me up! Now, let’s talk about what kind of super villain this will create. Everyone knows that with the creation of a superhero, there is an equal and opposite creation of a super villain. Water dissolves salt. Silver conducts electricity while glass and quartz do not. This means Hydraglass Man is my new arch nemesis. Oh, what a tricky villain indeed! Okay, I must sign off now, lots of planning to do on how to defeat this new enemy. Hydraglass Man is seething with evilness, I must stop him.
BRCA blog Entry: March 2, 2015
Today’s meeting with the oncologist breast surgeon was quick. This part of the surgery is a bit simpler than the reconstruction phase. I am to get an MRI and then meet with plastic surgeon next. The MRI is to make double sure there’s no cancer, even though the mammogram already showed all clear. It’s good to be thorough, so I’ll be glad to have the MRI.
Today’s doctor asked me about the part of my plans concerning the ovaries and having children. I told him I probably wouldn’t have kids. His opinion was that I shouldn’t forgo having kids out of fear of passing on this genetic mutation. He believes the progress that’s being made in terms of preventative measures is advancing so quickly, we may nip this thing in the bud even in my generation.
Wow. The most surprising part of today’s visit was how the doctor’s opinion made me feel. I felt warmed by it, and even a bit relieved. I had been coming to the conclusion that I have a moral obligation NOT to pass on this genetic mutation and therefore shouldn’t even try to have kids in the future. I admit I’m still very conflicted about the whole kids thing. As a single woman now focusing on my career and not relationships, I’ve been leaning towards just closing that door all together. But the way I felt when the doctor said that tells me that because I’m still greatly conflicted about it, I shouldn’t do anything to permanently close that door just yet.
I’m going through with the breast surgery no matter what, and I want it done soon (like this month if possible!) so I can move on and put this part of it behind me. But other than using birth control as a chemo-preventative measure for ovarian cancer, I don’t think I’m ready to make any final decisions on that stuff yet.
BRCA blog Entry: February 27, 2015
I promised transparency, so here it is. What good does it do only to tell you about the facts, my appointments, and my final decisions in this process while leaving out the thoughts and emotions that are going on behind the scenes? No, if you’re facing similar decisions (or know someone who is) I want you to know that the swinging of your emotions are normal. You may swing from feeling positive to feeling devastated, and yeah, it can be difficult to deal with, but you’ll get through it because things like this take time for us to process.
Today I’m really angry. I’m so angry that I have a genetic defect that predisposes me to cancer. And I’m angry that it scares me. Some days I feel like my life is under constant threat and I worry that my time on earth will be shorter than it should be. I hate this. Overall, I feel that I’m coping well with things. But some days the anger surfaces and I could spit fire. That’s saying a lot for me, because hardly anything makes me angry.
I hate that if I want to do everything I can to prevent cancer, I have to amputate parts of my body. That sucks. I hate that I am worried about how I will look after I get the mastectomy. Will I have health problems afterwards? Will I still be able to run and do push ups and strength train like I do now? Will I even be attractive “in that area”? Will I face rejection from men because I’ve had the surgery? Will my genetic state of affairs deter a potential future suitor? Yeah, I said it. I’m angry that this whole thing could negatively impact my “lovability.” My fingers shoot angry fire as I write this, oh I’m typin’ the bejeezers outta this keyboard. I’ve never known true love and it’s something I want to find. It just hurts me to think this stupid genetic thing could get in the way of that end. I inject here, that I am aware of and in alignment with the fact that confidence comes from within, and it’s something I have no matter what other people think of me. But it doesn’t mean I don’t think about the impact this whole thing will have on the different aspects of my life.
Yeah I’m afraid and angry, and I really just needed to vent. I happen to enjoy a very close relationship with God (yeah, I said it, deal with it!) and I trust him with my life. I am overall very positive about my life in every aspect. But I wanted to share some of these darker things with you so that you will know you’re normal and not alone if you feel them too. We ain’t supposed to feel like sunshine and rainbows all the time – it’s okay to feel anger and sadness and fear. Just remember you’ll work through it all and the pendulum will always return to the positive side of life, there’s too much beauty and love and amazement in this life for it not to.
Thanks for the vent session. I meet with breast surgeon on March 2 to discuss the mastectomy and reconstruction, I’ll post an update after that.
BRCA blog Entry: February 11, 2015
Today I met with an oncologist as a followup to my ultrasound. He explained that my test appears normal to him, nothing to make him think the small cyst-like item on the left ovary would be cancerous. Whew! I am very much celebrating being all clear on the health front!
So, what’s to do now? Next comes a meeting with surgeons about the preventative mastectomy. I still need to schedule it, but my primary care doc wanted me to address the ovary issue first. Time to schedule the appointment.
Now, about the ovaries again. I’ve already begun birth control as a method of ovarian cancer risk reduction. The oncologist said today that it can reduce my risk up to 40%. That’s pretty good. Having just the tubes removed would also reduce the risk, this would allow me to keep the ovaries for the benefit of their natural estrogen in my body, for now. He said they believe many ovarian cancers begin in the tubes, therefore removing them is a step in the direction of prevention. However, such a move would prevent me from being able to have children without in vitro (IVF). I did receive some information today that conflicts with other things I’ve read about having the ovaries removed especially for someone at my age (34) and supplementing with HRT afterwards. So for now, the information remains conflicting until I get some clarification.
The point of cancer prevention is to take steps to prevent it – while you’re healthy and disease-free. That’s why I’m having the mastectomy. If I weren’t dealing with conflicting info about hormones and general safety of removing the ovaries at my age, I might be ready to schedule that surgery too. The issue of children remains – I have none, and a history of infertility. So even if I decided to hold off on removing tubes/ovaries for that reason, there’s no guarantee I’d even conceive, and we have the issue of “advanced maternal age” where egg quality declines at 35 and higher. But an overlying fact here is: I don’t have any plans to “work” on this issue in the near future. I don’t have a mate, don’t even want one right now. And do I even want to get pregnant? I’d be open to adopting, or to meeting someone with kids, so it’s not like I’ll never have the chance to have a child in my life if I choose to. Soooo, in all honesty, that leaves me leaning towards having a preventative surgery either on the tubes or the ovaries, or both. I’m not at a decision yet, so I have more thinking and researching to do.
The purpose of this blog is to share my thought process and feelings on the issue, just in case you or someone you know/love are going through this too. It’s complicated, the decisions are difficult, and there is a lot of weighing the pro’s and con’s of it all. I’m wading through the information, confident I’ll arrive at the best decisions for myself. The whole point of being tested for this mutation was so that I could take steps to prevent getting cancer, that doesn’t mean it’s easy, but it’s a chance to set myself up for the healthiest life possible.
BRCA blog Entry: February 3, 2015
So I’ve had the first round of preventative screenings done. I had the “smashogram” (mammogram) done, the results were ALL CLEAR. Woohoo! I also had the blood test for CA-125, which checks for the cancer antigen CA-125. Elevated levels are associated with ovarian cancer (sometimes!). My blood test was all clear. I then had the pelvic ultrasound done. It picked up something on one of my ovaries measuring 1.1 x 1.6 cm that is “semi-solid,” therefore to be safe, my doctor has referred me to an oncologist to further investigate. It could be benign, or not-benign, so we need to get it checked out. Hmm, I never dreamed I’d be talking about my ovaries. But, hey – the purpose of this is to share my experience with being a BRCA Mutant, so that I can be of assistance or support to anyone else in the same boat!
The options for reducing my risk for cancer are pretty extreme. Due to my mutation, (and for most women with the BRCA1 mutation) the medical community estimates that I have up to an 87% risk of getting breast cancer by the time I’m 70 years old, and up to a 49% risk of getting ovarian cancer also by the time I’m 70. For me, these numbers are too high. I’ve had the thought, and while it was only a fleeting one, that to do nothing to reduce my risk feels like playing Russian Roulette with a gun that is 87% loaded. That’s not a very comfortable feeling! So I’ve decided to adhere to the risk-reducing options that I have now, even though they’re pretty extreme, because it’s the only concrete information there is for me to base my decision on. I’ll soon be consulting with surgeons about having the “prophylactic double mastectomy” done, or the complete removal of breast tissue, followed by “reconstruction.”
These are pretty ugly words. But do you know what’s an uglier word? Cancer. Look, cancer survival rates are great these days, for most types, and keep improving. But if it can be avoided, or if steps can be taken to prevent it, my opinion – this is just me talking – is that the best choice for me is to take those steps to prevent it. Years ago, I cared for my then-fiancee as he was dying of an inherited type of cancer of the spine that he couldn’t do anything about. I think of him saying, if only he could have cut something out to keep the cancer from getting him, he would have. But there was no option of cutting out the spine, and when the chemo and radiation finally failed, that was it.
Of all the research available to us, there’s nothing to support how much a healthy lifestyle mitigates the risks for those of us with this mutation. The only lifestyle factor that seems to be supported with research is that smoking really increases the odds of developing cancer. So, we do not have numbers on how lifestyle factors (diet, exercise, etc) influence the cancer risk. BUT that doesn’t mean they don’t have an impact, for better or worse, it simply means the medical community has yet to focus on those.
As for the risk of ovarian cancer, the largest risk reduction option lies in having the ovaries removed with a “prophylactic oophorectomy.” However, this procedure isn’t without risk because removing the natural source of estrogen from a woman’s body, especially women under 50, (I am 34) carries increased risk of heart, bone, and brain disease. WTF?! Not to mention the fact that such a surgery eliminates the possibility of having children. I do not have children, however I want to keep that door open for now, therefore removing the ovaries is not my first option. Instead, taking birth control has been shown to have a reduction in the risk of ovarian cancer by up to 60%, and that is my chosen risk reducing method for now. It’s important to note that the medical community agrees that if you are a woman under 50 and choose to have your ovaries removed, using hormone replacement therapy is important in helping to stave off the risks of heart, bone, and brain disease — however, I sure would love to see some numbers on exactly how much HRT decreases the risk of those issues!
I go to the ovary doctor on February 11 to see how they want to proceed with further checking out the tiny and presumably (I’m willing it to be!) benign speck found on the ultrasound. After that, as I am in full confidence that it’ll turn out to “be nothing,” I’ll begin the surgical process as mentioned above. I have high hopes, and blooming optimism, that my choices will ensure that I stay healthy so that I can vivaciously enjoy my life!
#brca #brca1 #brca2 #breastcancer #ovariancancer #hereditarycancer #angelinajolie #theangelinajolieeffect #mastectomy #preventativemastectomy