Category Archives: Complication City

Another one behind me

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!

Healing well

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WARNING: NSFW / graphic content below.

Elephant on chest So far, so good. Things are looking good and healing well after my latest surgery two weeks ago when a tissue expander was placed on my right side. I am not loving the discomfort I have. Feeling no pain, but the tightness is definitely there! It is that elephant-on-your-chest feeling. Not as bad as after original mastectomy, but still very uncomfortable.

I have not been doing my stretching and range of motion exercises on a regular basis, so time to get back to those at least once per day. No lazy days! I am a fan of the Coach Casey Eischen post-mastectomy exercise program. She designed it specifically for women recovering from breast cancer related surgeries after she had her own PBM and noticed a void in this area. Check out FoobieFitness.com for exercise tips, videos, and nutritional information. Here is the video with level 1 & 2 exercises. These helped me a lot after my original surgery two years ago and each one after that.

And here’s my progress pic: two weeks after tissue expander placement on my right side (left in pic).

First expansion: March 4. Exchange surgery: July 23, 2015.

Long road of expansions ahead

So it goes

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It has been two years since I had my prophylactic bilateral mastectomy. January 22, 2013 was the day. At the time, I expected the breast reconstruction process to take somewhere around six months. Well, two years later I am uniboobin’ it once again and it will be at least another six months before I will have my next (last?) exchange surgery.

So it goes.

This process has not been easy. I’ve hit a couple of significant snags, but I still say this: I WOULD DO IT ALL OVER AGAIN. Knowing what would come my way, if I had to go back in time and contemplate moving forward, but not being able to change anything, I would make the same decision and do this all over again. I won’t lie, I have had bad days. They don’t come often, but they do. On those days I choose to take a deep breath and focus on the big picture and the positive. I consider the reason why I made this decision in the first place. I said NOPE to breast cancer and I would do it all over again. I choose to accept and look forward. So it goes.

Attitude

Here’s a recap of my procedures:

01/2013 – Prophylactic bilateral mastectomy with tissue expander placement
09/2013 – Exchange surgery
10/2013 – Infection and left implant removal
04/2014 – Expander placement and revision surgery
09/2014 – Exchange surgery
10/2014 – Right implant removal

In just a few days, on January 27, I will have surgery #7. During this procedure, Dr. M will be placing a tissue expander on my right side. Over the coming months I will again go through the expansion process until I reach 550ccs. My exchange surgery is scheduled for July 23. I feel like I’m a surgery pro at this point. The coordinator from the hospital called today and we very briefly talked about logistics of the day of surgery. She remembered talking to me before and admitted I received the condensed version of the spiel. Fine by me. I know the drill by now. I’m ready to go! Last thing to do is review my handy dandy surgery prep checklist and gather a few items.

Will I have a drain again? Will everything go OK? Will I have any more complications? I hope not, but if I do … so it goes. Shit happens. We deal with it, because we have to. Happiness (or misery) is in the heart, not in the circumstances.

You’re up

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I got the call. Woo hoo! I got the call that made my day. It really made my month. There has been a cancellation and an earlier spot is available on Dr. M’s calendar. I’ve been bugging the Patient Care Coordinator for a few months now and have been at the top of the cancellation list, so the spot is all mine. My next surgery has been moved up to January 27!

That’s only two weeks away! I am ecstatic. Thee months into the six month wait, but I’ll take it!

During this surgery we are going to be placing a tissue expander on the right side, where we had to deconstruct after the last incident in October. I also got the exchange surgery penciled in for July 23. I’m at the top of that cancellation list too and may be up sooner. There is a slight chance that I’ll go right to implant and not need surgery #8, but I’m not holding my breath.

That is all. Just this awesomely good news. 🙂