PICC

WARNING: NSFW / graphic content below.

PICC lineI 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.

2015_8_19I 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 <3 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.

PICC xray

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:

  1. 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.
  2. 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?

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.

michaelscottnoooI’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?

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

Drain tubeAlthough 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!

2015_7_30

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

IMG_3901I 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

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:

  • MedicationsRecovery aids
  • 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

Yoda fucksI 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).

IMG_3801

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

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.

dinnerOne of tbeBRCAwarehe 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

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.