Tag Archives: Previvor

Saying NOPE to Ovarian Cancer too

What’s next?

Over the coming days/months/years I will continue to visit my gynecologic oncologist for regular exams. We will work together to plan for the future and adjust as needed. And of course: eat healthy, exercise and meditate regularly, live clean, wear sunblock, and lay off the booze! At this point, I have some peace-of-mind in taking another step towards reducing my risk of the gynecological cancers that have affected my family. I’m doing what I can to say NOPE to breast and ovarian cancer!

The good old days

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WARNING: NSFW / graphic content below.

It has been over four months since my most recent surgery (March 1, 2016) and three and a half years since I had my prophylactic bilateral mastectomy. As I’ve said before, I have no regrets and am glad that I made the decision to undertake this journey. The last few years have not been easy, but it has all been worth it! hood

Things look great! I would even dare to say they are perfect (see photo below). Of course, there are little things here and there; we are our own worst critic. For example: I lost part of my nipple to necrosis, which resulted in loss of pigment, so I’ve been considering a 3D nipple tattoo to fill that in. In all honesty though, after the complications I’ve dealt with and how long this has taken, I am ecstatic about the outcome!

I’m in a great place in all aspects of my life:

This is all finally behind me and I’m happy to say I’ve had nothing but love and support from my husband, family, and all those around me (including you!).
On a personal level: hub and I are about to celebrate 10 years of marriage and 20 years together, we’ve traveled a bit this year and will be going to Ireland as well as the motherland to see my family in September AND the FORCE conference in Orlando in October, I chopped off some of my long hair and am slowly making my way to blonde (I love it!), and I lost the 15 pounds I gained over the last three+ years.
On the work front: I love my job, which allows me to work from home, and I’m about to dive into a really exciting business opportunity (more details later).

It’s easy to say things are great when they really are great, but if you’ve been reading my blog for a bit, you may know that I’m a firm believer that your attitude really is everything. My anthem has been These Are The Good Old Days by Pink. Even when they were shit days, they were still good days. I had the chance to say NOPE to breast cancer.

Throughout this process, I’ve remained positive and never lost sight of my “why” for doing all this, which was to greatly reduce my risk of developing breast cancer. Although we are BRCA mutation uninformed negative, cancer has been plaguing our family. My sister was just 29 when she died from the disease (I’m 35). My mother was diagnosed with ovarian cancer and died just a little over a year later. My aunt is in remission from colorectal cancer. I’ve been discussing a salpingectomy with my oncologist and will most likely have that procedure before 40 (stay tuned) followed by an oophorectomy after 50. At the end of the day, I am glad I made the decision to be proactive. I will continue to closely monitor my health and make decisions that best address and mitigate my personal risk.

Because “these are the good old days and I think I’d like to stay” – Pink.

The results

Another one behind me

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It has been over three years since I started this process. On January 22, 2013 I underwent a prophylactic bilateral mastectomy to greatly reduce my risk of developing breast cancer and started breast reconstruction. Since then, I had a few complications, due to which the process took much longer than planned.

On March 1, 2016 I had my 9th surgery. Fun stuff!

Honestly, at this point, I’m tired of talking about it (and feel like my friends and family are tired of hearing about it too). I figured I should at least tell you boys and girls, since it is part of my process and well, this is what the blog is for: to document my journey.

What I thought was my last procedure was in July 2015, when we swapped the expander on my right with an implant. After that surgery, I received IV antibiotics for a month (see post: PICC life). Things cleared up and three months out I went on vacay to Mexico, where I finally was able to wear a bikini without an expander! I enjoyed being done and was very much relieved.

Shortly after, I noticed a bit of a divot above my right side. At the time I thought: no biggie, things take time to settle and it wasn’t really that bad. Over the next couple of months, the divot got deeper and the implant dropped lower. By January I knew that the implant had bottomed out and surgery was the only way to fix it. After consulting with my plastic surgeon, I scheduled the procedure. Over the next two months I went back and forth on whether I would actually have it. On one hand, I was displeased with the outcome and did not like seeing it in the mirror; on the other, I have experienced multiple complications and was afraid of the possibility of more issues. I had it. The PS did a pocket revision; easy surgery and super easy recovery.

465t377 Although the tone of this post may not be entirely positive, I am in a good place. I feel great and still have no regrets about having the PBM. Somebody told me that it wouldn’t be easy and they were right. Totally worth it, though. However, I won’t say I’m done, because I’ve already declared that a couple of times and was wrong. We shall see where this goes. So far everything looks good.

PICC life

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nofuncity Greetings from NO FUN City

It has been four weeks since I got the PICC (peripherally inserted catheter). That’s how long I have now been on IV vancomycin. I have been cranky and frustrated.

Why?

Following my most recent surgery two months ago, I developed a spot of redness. The cause was a mystery. No fever, swelling, discharge, or open wound. An ultrasound didn’t tell us much.

Suspecting an infection, my doctor and I agreed that antibiotics were the way to go. Two different oral types didn’t help, so we moved to the big gun, vancomycin, which is a broad spectrum antibiotic often used to treat staph. I was willing to try anything to avoid another surgery and potential implant removal. Been there, don’t want to do that again!

How?

The vanco would be delivered intravenously, so I visited the hospital’s intervention radiology department and had a PICC inserted into my upper arm. I was told I would not need to be hospitalized for this treatment and sent on my way. Later that day I had a delivery of supplies and meds (holy moly, it was a lot of stuff). In the late evening a nurse came to hook me up to my new best friend. I chose to have an electronic pump deliver the meds on a programmed schedule, rather than administering the doses myself. This meant I would be lugging it all around with me 24/7.

My fridge was full of meds and my dining room table became the supply station and the place where every couple of days I sat with nurses that visited me to draw blood and change dressings. Over the course of four weeks I had 79 infusions and 13 visits by 7 different nurses. For showers, I had to plastic wrap my arm and bathe using only the other one.

PICClife

Initially this was a two week gig, but when the progress wasn’t satisfactory, we extended the treatment for another week, and then one more. Throughout I kept my doc updated via emails and photos. There were a few office visits in there too. My insurance covered all this at 100%.

Now what?

Although initially we saw improvement in the redness, a new spot developed in another area, and some days it was angry red and others not. Right now the spots are faint, but still there. After four weeks of treatment, we did a status check and weighed the options:

Continue treatment
Stop treatment and keep a close eye on it
Go in there to get a tissue sample and send for cultures

At this point, I am not confident that what we are doing now is really helping, so we are going with #2. It is possible this isn’t an infection. We discussed this at the very beginning, but then it seemed like the best explanation. Since I had no open wound, we weren’t able to get swabs for cultures and I was not a fan of going in there as mentioned above. If this was an infection, the vanco would’ve nixed it by now. What exactly is going on, we don’t know for sure. It may be happening due to the physical stress on the tissue or some other thing we haven’t thought of. My body is weird … the various complications from the last three years are proof.

But for now, I am free of the pump and bag! To celebrate, I had lunch with friends and went bathing suit shopping for an upcoming trip to Punta Mita, Mexico. I can’t wait to lay on the beach and think about my next margarita instead of my next infusion. Fingers crossed that this will resolve over the coming days/weeks. It’s the last hurdle before I cross the finish line.

PICC

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WARNING: NSFW / graphic content below.

I wish that PICC stood for something fun like Party In a Cool Club or Pretty In the Color Chartreuse (I like green; I’m also not very creative). Unfortunately in this instance, it means Peripherally Inserted Central Catheter. That is what I am now sporting.

How did I get here?

One month ago I had my latest surgery: an exchange of right tissue expander to implant. Two weeks later I noticed a red spot below the incision and was put back on an oral antibiotic: Bactrim. During my follow up appointment a week later we did an ultrasound and the only thing we got out of it was that the skin layer in the area that is red is thinner than in the areas that are not red. There isn’t a mass or anything like it and it doesn’t look like there’s fluid build up either, but that doesn’t rule out an infection. We added a second antibiotic to the mix: Rifampin. After another week, this thing seems to be getting worse, not better, which tells me the oral antibiotics are not helping.

I consulted with my PS via email (including daily photos; this one is from Wednesday evening), as I was on a business trip and wasn’t able to see him in person. Based on a similar experience of a woman in the Facebook Prophylactic Mastectomy group (I ❤ this group!), I asked my doctor about IV Vancomycin. This is the big gun in antibiotic-land. He agreed that this was an appropriate next step.

Yesterday I hightailed it to the hospital’s radiology department to get a PICC put in for the Vanco infusions. As mentioned above, this is a peripherally inserted central catheter that is used over a prolonged period of time to deliver extended antibiotic therapy. I have never had one of these before and was nervous about it. The process is pretty quick and mostly painless. The nurse did a great job explaining exactly what was going to happen. We also chatted about BRCA, family history, and concerns about testing and a positive result. I shared my thoughts and experience as well as contact info and our upcoming local FORCE support group meeting details. She was right, the worst part was the local numbing injection that burned for about 10 seconds. After that the PICC was inserted into my upper arm’s basilic vein and threaded all the way to my heart. That part was painless.

I am set up to receive home care versus being hospitalized and this is all covered 100% by my insurance provider, because I have already met my deductible and out-of-pocket max for the year. However, one of the requirements is that I am home-bound while I receive this form of therapy. Not really an issue, since I work from home and have a hubby that can run errands. There are two ways I could receive the infusions:

IV bag and electronic pump: this option is managed by the nurse and automatically pumps the meds every 12 hours, but I am attached to the bag and pump.
Elastomeric pump (aka ball or grenade): this option would leave me free of attachments except for an hour or so when the pump is needed to push the meds, but I do the work.

Since I am very new to this and am not 100% comfortable with being in charge of administering the meds, hooking things up, and flushing lines, I chose option 1. I took delivery of all the supplies and six days worth of meds later in the day and had my first visit with the home care nurse in the evening. She explained how everything works, hooked me up to the bag and pump, and sat with me for the whole infusion to make sure I didn’t have any adverse side effects. All went well. She also explained that I am able to switch to option 2, but not until I have gone through the six day supply of meds that were already delivered in the larger bags (no returns). A nurse will visit me every two days to change the bag and dressings.

So far not seeing much of a change in redness, but I’m not expecting to at this point. The vanco makes my scalp and palms a bit itchy, but that is a common side effect. I experienced same before each surgery. Before my second infusion this morning I took a Benadryl, which helped. Next nurse visit will be on Sunday.

Srsly?

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At this point, I don’t really know what to expect. Is this ever going to end? I have already lost an implant twice: one year apart, one per side, both a month out from exchange surgery, but for different reasons. I am 3.5 weeks post-op and worried.

michaelscottnooo I’m paranoid at this point, so I check things over a couple of times per day. Two weeks after my exchange surgery, I noticed a new spot on my right breast, the one we just exchanged. Part of it was hidden underneath the hypafix tape that was still hanging on, so I removed that to investigate what was going on underneath it. It was below (but not including) my incision, about an inch in diameter, and red. #FML #WTF #SRSLY. Please, not again! That familiar feeling of dread washed over me. I sent photos to my plastic surgeon looking for some feedback and reassurance. The response began with:

“I doubt this is anything serious, but with you, one never knows. …”

We emailed a bit more and a Bacrtim (antibiotic) prescription was called in to my pharmacy. Fast forward a week: the spot is still there! Some days it is darker and wider than others and I’ve been keeping my PS updated by email. I am now seeing a hint of blue, which is not a good sign. This is really deflating, but I am really trying to keep my shit together and take it one day at a time. This sums things up nicely:

“Your breasts do not make sense. I remain hopeful and a little concerned. …”

I completely agree: this does not make sense! It popped up 2 weeks after surgery, I have not been using any products on the skin, I am not wearing bras or tight clothing, there are no other areas that look like this. Is it an infection? I’m back on Bactrim for over a week, why isn’t it going away? Do we need to switch to something else? Or do I just sit and wait? I go in to see the PS on Monday.

On top of that, I discovered a lump in the same breast at about 11 o’clock. We are both puzzled by it and can’t explain what it is. It was not there before surgery and Dr. M didn’t note any lumps while he was in there during surgery. Maybe it’s another stitch knot, not yet dissolved (one of these little assholes cost me an implant last time). He suggested that it may be a surgical staple, but not 100% sure if those were used; there’s nothing about them in my post-op report. My immediate concern is the suspicious red spot that won’t go away. To be continued …

Happy ending?

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WARNING: NSFW / graphic content below.

One week after exchange surgery, during which my right tissue expander was replaced with an implant, I am feeling fantastic! My recovery has been going very well and I like what I see. The surgery took a few hours; I was home by 2pm. I left the hospital in a bra and with a drain exiting my right armpit. I suspected I would have one, so while still a big bummer, it was not a surprise. The pain level was low overall (maybe a 3). The following days were uneventful. I spent the weekend home alone, mostly reading and sleeping.

Pain Scale

Although my level of activity was low, drain output was 80mL for the first couple of days, so it had to stay in a bit longer. During my second follow up appointment, on Monday, the drain was removed. About a foot of tubing, which was placed in the pocket around the implant, was pulled out (see pic on right: from the black stitch just under the hand, all the way down!). This is usually not painful, just weird. Good riddance! Feeling so much better with that thing out of me. Dr. M declared that things were looking good and ordered a follow up a week later.

So, how are things looking? You tell me!

Mentor round, smooth, high profile, silicone in 450ccs. Left in pic: 1 week, right: 10 months.

I am still swollen and bruised (Arnica helped), but the result is pretty darn good, considering the circumstances. I’m hesitant to celebrate, however. With my history, I have a few more weeks to go until I can breathe a little easier. The issues I experienced after my last two exchange surgeries (see: Houston, we have a problem and Déjà vu) both happened about a month out. So, fingers crossed that this is my happy ending! I can’t wait to move on with my life.

T-minus

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WARNING: NSFW / graphic content below.

The final countdown has begun. T minus seven days until my exchange surgery! That’s right, just one week left. This will be surgery #8 in the mastectomy and breast reconstruction process, which started January 22, 2013. The goal is to replace the tissue expander on my right with a squishy implant. On one hand, I am very excited about this surgery, as it should be my last one. However, I am also incredibly anxious. This process was supposed to take about eight months and two surgeries. Here we are 2.5 years later with #8 on the horizon. I’ve experienced a few complications that have drawn it out and caused me a lot of grief. In any case, this time next week I will be home and it will be behind me. I can focus on healing and moving on with my life!

Surgery prep

As I prepare for next week, I think about what supplies I need to gather. I’m dusting off the good ol’ Checklist that has helped me get my stuff together each time. I’ll be using the abbreviated version from my Box o’ recovery crap post, which lists the things I keep on the night stand:

Medications
Lanyard (I will very likely have a drain)
Measuring cup
Rubber gloves
Alcohol swabs
Scissors
Tape
Digital thermometer
Back scratcher
Tiara (of course!)
Tissues
Chap stick
Cough drops
Water
Snacks
Hand sanitizer
Lotion
Note pad and pen (to track meds and temperature)
Camera
Kindle
Phone and charger

That should do it.

Status update

I haven’t posted a photo since the tissue expander placement, six months ago. Slacker! My expansions went OK. That side is a different shape and size than my implant, of course, but not too bad. We stopped expansions at 450ccs, which is the volume of the implant on my left. There are a few things off at this point, like my nipples not being “level” and some weird divot in my cleavage, but honestly, at this point, I’m almost all out of fucks to give about these details.

So here I am, On the left in photo I am sporting a tissue expander in 450ccs. On the right I have a Mentor round, smooth, high profile, silicone implant in 450ccs (10 months after exchange).

A few months after surgery I’ll evaluate the state of things and decide how much the details are bothering me and if there is anything else to be done. Maybe that divot will fill out (it’s OK in a bra) and the nipple-level thing won’t be as bad. Things will be different with an implant and maybe they’ll be symmetrical and just right.

One thing I know will definitely follow is a tattoo by Amy Black. I still haven’t decided if it will be just a 3D nipple fill or something artsy fartsy and covering more of my chest wall. We shall see!

FORCE Conference, BSO, HRT, and more

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This past weekend, I attended the 9th Annual Joining FORCEs Against Hereditary Breast and Ovarian Cancer Conference in Philadelphia. This is the only event of its kind; created by and for the members of the HBOC community. To say that this event was awesome is a gross understatement. It was an amazing weekend packed with relevant content and activities.

Leading researchers and experts in related fields presented on latest research. I learned about newest options for cancer screening and prevention. Most interesting to me were the sessions related to ovarian cancer, since I am currently considering a risk-reducing bilateral salpingo-oophorectomy (BSO).

My personal takeaways on the topic of Ovarian Cancer: Early Detection and Prevention, presented by Dr. Beth Karlan, Cedars-Sinai (slides):

Taking tubes only (salpingectomy) and sparing the ovaries is a reasonable intermediate step for younger women (I’m 34). It is still recommended to remove the ovaries in natural menopausal age (early 50s).
Taking one ovary does not change age of menopause.
In general, there is no need to remove uterus at time of BSO or salpingectomy alone, based on current info and this varies by individual.

The tube-only and one ovary option is very attractive to me at this point. However, if I choose the BSO, surgical menopause will very shortly follow, so I also attended a session about Managing Menopause Without Hormones by Dr. Ann Steiner, Penn (slides) and Dr. Diljeet Singh, Permanente (slides). If you’ve been reading my blog for a bit, you may have noticed that I maintain a plant-based lifestyle and stay away from processed or synthetic products. When it comes to managing menopause symptoms with hormone replacement therapy (HRT), I am hesitant. I understand there are bio-identical hormones available and Premarin is an option, but I am uncomfortable with the idea of any HRT, because essentially I will be introducing something my body didn’t produce itself naturally/synthetic. After this great session about other options for managing symptoms, I stuck around to ask each of these experts their opinion on HRT for someone like me, who will need to be on it for 10+ years. Would they recommend HRT to manage long-term issues (osteoporosis, heart disease, loss of cognitive function, etc.) or can these symptoms be successfully managed without HRT? I didn’t get a clear answer and the advice was conflicting, so the jury is still out. If I choose to spare an ovary or both, this will be a non-issue, but nonetheless it was great to learn about the non-HRT options.

I will be discussing this topic again with my gyn onc in October, when it is time for my bi-annual screening (TVU and CA-125). At this time, I know I will be having some risk-reducing surgery in the future, but have not yet decided which type and when.

dinner One of t beBRCAware he other awesome things about the conference is that many other women (and men) from our relatively small HBOC community attend (650 this year), so it’s an opportunity to finally meet in-person some individuals I’ve been chatting with online. Also, got a chance to catch up with those that were there last year. Loved spending time with my FORCE buds!

And lastly, THANK YOU FOR YOUR SUPPORT to all those that came to visit nope2BC and bought jewelry. All the proceeds are donated to FORCE and with your help, we raised a lot of money! Hope you enjoy your pieces.

Will you join us next year? The 10th Annual Joining FORCEs Against Hereditary Breast and Ovarian Cancer Conference will take place in Orlando, FL, October 6-8, 2016. I’ll be there!

FORCEconferenceOrlando

Angelina Jolie Pitt: Diary of a Surgery

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Once again, the HBOC community is buzzing. If you haven’t already seen, Angelina Jolie Pitt has published another NY Times Op-Ed. This time about her choice and reasons for undergoing a bilateral salpingo-oophorectomy (removal of fallopian tubes and ovaries). She explains that she has been planning to have this procedure for some time, but recent test results pushed her to go through with it to reduce her risk.

She is careful to point out that this choice is her own and right for her after carefully considering options, but may not be for others. Surgery is not the only option.

I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

I am again so thankful that she chose to share with the world her genetic status and decisions related to her health. She is bringing global awareness to hereditary breast and ovarian cancer, what many organizations have been striving to do for years. Also empowering women and families facing hereditary cancer to discuss and seek out options available to them.

As I read and react to her piece, I think of my own family history and my health. I lost my mother to ovarian cancer a little over a year ago (29 year old sister to breast, great grandmother to ovarian, and have an aunt undergoing treatment for colorectal). We do not carry any of the known genetic mutations that increase risk of cancer (we are uninformed negative; read old post on the topic), however, my doctors and genetic counselor are convinced something is there, just hasn’t yet been identified. I am managing my healthcare assuming same. In just a few days I will be meeting with my oncologist for the regular bi-annual appointment, which will include the same blood test Jolie Pitt mentions as well as an ultrasound. I know that just like her, the moment those results are abnormal, my surgery will be scheduled. I have also done lots of research and considered other options, but already know this surgery is the right answer for me personally. It will greatly reduce the risk of ovarian cancer, just as the prophylactic mastectomy does for breast cancer. When is the question. I dread the aftermath, which includes surgical menopause, and have thus far been putting it off. Cross your fingers for me.

For more information about genetic mutations, hereditary breast and ovarian cancer syndrome, screening and prevention options, local support group finder, and much more, visit the FORCE: Facing Our Risk of Cancer Empowered website. Talk to your doctor about your family history and whether genetic testing is right for you. To find a genetic counselor in your area, check the National Society of Genetic Counselors website.