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

This is what it’s really like to get a mastectomy

This Is What It’s Really Like To Get A Mastectomy

After being diagnosed with breast cancer at age 40, Ann Marie Otis, now 44, had, as she says somewhat jarringly, her breasts “amputated.”

It’s not a term most of us would choose to describe a double mastectomy, but she’s not wrong. After all, an amputation is the surgical removal of an extremity; a mastectomy is the surgical removal of a breast. Thinking of the two procedures as one in the same could drastically change our perception of breast cancer treatment.

Read more

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.

Bralooza

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Do you know that most insurance providers (in the US) cover post-mastectomy bras for women who have undergone a mastectomy? There are limitations, deductibles and co-pays still apply, and you might have to jump through some hoops. More info below photos.

I get six bras and six camisoles per year under my current plan. I recently visited a local mastectomy boutique for a fitting and left with four Coobie bras, two Anita bras, and two camisoles (+ third on order). I will return in the spring when Amoena releases new colors and styles to pick up three more camisoles. The experience was relatively hassle-free and since I already met my out-of-pocket maximum for the year, they were all covered at 100%.

How does it work?

I started by calling my insurance provider to check level of coverage and to request a list of providers. Post-mastectomy bras are considered medical devices (the code is L8000), so I got a list of places that sell all kinds of devices, which didn’t really help. Then I contacted a local mastectomy boutique: 1. to ask if they work with my insurance provider, 2. determine what I needed to do before I came in, and 3. to make an appointment. I provided my surgeon’s contact information and my insurance details. The boutique reached out to my plastic surgeon and obtained the required prescription and details. They also contacted my insurance provider and secured pre-authorization. A week later I got a call that all was set. They really made it easy.

Some insurance providers work with stores like Nordstrom (appointment required). Those that don’t may reimburse after the fact. Also, stores carry different stock, so if you want Coobie bras, you may need to call around. Keep looking until you find a place that works for you. There are options. Nordstrom will even remove underwires for free (so I hear).

There are providers out there that post their policy online and you may see caveats such as “covered instead of reconstructive breast surgery” or that a breast cancer diagnosis is required. Don’t give up. You may still get coverage if your surgery was prophylactic and you chose to complete reconstruction. You could be asked to prove medical necessity though. The insurance department at the boutique will help you with this. However, if your provider does cover these, keep in mind that your deductible and co-insurance may still apply. Also, they may only cover “basic” bras, so no bejeweled magic lifting contraptions. 🙂

Reintroduction

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I said NOPE to Breast Cancer I never really worried or thought much about cancer … until my sister was diagnosed with breast cancer at the age of 28. At the time, I was 21 years old, naive, in college, worried about what plans I had for the weekend, and didn’t really grasp what that meant. More than ten years later, my sister is gone, my mom is gone (ovarian cancer), my aunt is in treatment for colorectal cancer, my other sister just had her own scare, and although I am BRCA mutation uninformed negative, I underwent a prophylactic bilateral mastectomy and started the breast reconstruction process on January 22, 2013. I said NOPE to breast cancer.

Making the decision to undergo such a drastic surgery was both very difficult and extremely easy at the same time. It came after 10 years of vigilant screenings, when anxiety gripped me every six months as I prepared for my sonogram, mammogram, or MRI, anticipating the results to be the worst. When a screening discovered suspicious lumps, I knew that the time had come.

The reconstruction process was long, painful, and complicated (documented here on my blog). More than two years and eight surgeries later I can finally say I am done! No regrets. If I had to go through this all over again, knowing what complications were in store, I would make the same decision in a heartbeat.

It is not the right answer for everyone facing breast cancer and one that should not be taken lightly or made without research, consulting with experts/doctors, considering alternative options (screening, chemoprevention, holistic approaches, lifestyle changes), and understanding the consequences.

There are many resources out there that can help. The My Destiny Foundation and its Facebook support group has been there for me for the last three years, since the days I was making surgery prep lists and had lots of unanswered questions about my upcoming procedure and following recovery. The group is a family of strong women from all over the world that support each other, laugh together, cry together, and everything in between. Visit www.mydestiny-us.com to learn more. If you need support, request to join the Facebook support group. See you there!

Beyond Awareness: Working to Improve Outcomes for People Facing Hereditary Cancer – Facing Our Risk of Cancer Empowered

This week we mark National Hereditary Breast and Ovarian Cancer (HBOC) Week, and on Wednesday, National Previvor Day. This awareness campaign acknowledges the over one million people and families i…

Source: Beyond Awareness: Working to Improve Outcomes for People Facing Hereditary Cancer – Facing Our Risk of Cancer Empowered

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 …