We have a date!

February 10th!

We have a surgery date!!

77 days away.

It feels so good to have a date and be able to make plans. I’m stuck in this awkward place of not being happy with the way I look or feel and not really being able to do anything about it. Being able to see the end in sight makes me feel a lot more settled.

I don't like CT scans any better than MRIs

I had to do a couple more medical things to prepare for this surgery. I had my regular breast MRI along with a CT Angiogram to map out the blood vessels in the abdomen and make sure they are in good shape to handle microsurgery. I found out quickly though that I have an reaction to contrast dye. I’ve always had a negative reaction to the MRI dye where it makes me puke and just feel yucky, but for the CT Angiogram they use a different contrast dye that is stronger and push it through the IV at a faster rate. Of course, I immediately felt the warm sensation all over from the back of my throat to my toes which included the feeling like I peed (but I didn’t!). Then the dry heaving came. I was able to hold still and hold my breathe for enough time to get the scan but as soon as that breathe was let go, the puking feeling came right on. I knew that this was likely so the technicians hooked a puke bag on my finger before pushing me in. Thankfully, the scan with the dye is the last scan, so the technician came back in right away and helped me out. As my dry heaving calmed down, I noticed her looking at me funny. She asked, “Did you have a blemish on your forehead when you came in!” I explained that No, I didn’t. She said ok, let’s just take a look at your arms and while she disconnected the IV she said “Ope, there’s another one...yep that one on your head is getting bigger.” I had broken out in hives! She told me to stay lying down and that she was calling the doctor to check me out and get me some Benadryl. The room filled quickly with 6 staff members checking my vitals and asking a million questions about how I was feeling. I was just fine...it was just a little itchy. They made me take Benadryl and stay for observation for another hour. It delayed and changed our family plans that weekend just a bit as being on three times the usual amount of Benadryl makes me a little bit sleepy. Only 1% of patients have a reaction like this and of course, I'm that 1%. However, on top of that, I also developed what my doctor thinks may have been a delayed reaction to the iodinated contrast. Later that week, I developed small red bumps (my hives were very large in comparison) all over the trunk of my body and underarm area. Apparently this happens in even less patients, but I got 2 for 1. It itched like crazy while there (insert more Benadryl), but went away at 2 weeks out. 
I'm really hoping that these are my only complications when it comes to this surgery. Everything last time went so smoothly, but it's like since I've had these implants for reconstruction my body reacts differently than ever before and I cannot predict what it's going to do.

Prepping

This time around I know more of what to expect. I have a few button up or full zip shirts and comfy pants ready. I ordered a drain camisole to hold them all because I remembered loving that thing. I took a few inches off my hair so that it’s easier to deal with. I will do my nesting of making freezer meals before the surgery date comes. I have plenty of sick days accumulated so that missing work is not going to be an issue (other than trying to find someone to cover and the guilt I feel about leaving the office for this amount of time--sorry guys!) I spent most of my day time during my last recovery hanging out in a recliner, but we no longer have that, so I'm still on the hunt for a super comfy one that I can sleep away the recovery days in. I also have heard that a wedge pillow can make sleeping in bed with the drains still in more comfortable. I might invest in one instead of making the nest out of pillows that I did last time. The abdominal scar is going to be a new thing, so I'm not sure how that's going to feel...right now I'm planning on wearing a lot of leggings, but I'm not opposed to trying maternity jeans if it comes down to it. 

As I've started telling a few people at work, they've all asked "What can I do to help?" Really, there's not much. I eat what some have called during lunch "weird foods" because of my wheat allergy, so I don't need a meal train thing or anything like that. I really don't know what to say. I appreciate the offers, but really I think we've got things covered. I guess...keep your eye out on the work trading post for a recliner? Or maybe if you have a pair of those ridiculously soft but strangely patterned lularoe leggings sitting in the back of a drawer that you never wear, pass them my way for my recovery time so that I can pull way up over incisions and tuck my drains inside them? I'm going to miss the kids next home swim meet while recovering. I'm usually there running the computer on the deck, so they'll probably feel me not there...especially since one child believes I'm the only one who can put her cap on securely. Give them a little help if they look lost at the swim meet please. There's a lot of driving back and forth to Madison that has already occurred and will continue for check ups afterward...if you're heading that way for the day, let me know what day and we can see if we can carpool!

What is the next step?

If I wanted to remove my current implants and have them replaced with a safer brand, my plastic surgeon shared that she could move them to above my muscle and all that pain would go away. It would be a quick, easy surgery. She compared it to changing from one shoe to another. However, I’d still be stuck with a foreign object in my body and if breast implant illness is a thing for me, none of these symptoms will really go away.

Because of this, I have eliminated any implants (saline or silicone) as viable options for reconstruction option for here forward. Given my high c-reactive protein, my doctor believes that once I have the implants removed, I will be shocked at how good I feel, that my body has gotten so used to running this way that I don’t recognize how run down I truly am.

My options left are reconstruction with tissue transfer or go flat. Tissue transfer means that the plastic surgeon will take tissue, meaning fat, from a donor site around my body and use it to fill the breast pocket that is left when the implant is removed. The donor site is typically called a “flap.” Options include TRAM flap, which takes abdominal fat but also loses one set of abdominal muscles, Latissimus Dorsi Flap which takes back muscle. However, new technology allows doctors to perform microsurgery to actually reconnect the veins and arteries with a couple other donors sites so that you do not need to lose muscle on the process. This includes DIEP flap using abdominal fat and SGAP flap which uses gluteal fat. These options are now what’s considered the gold standard in breast reconstruction. All of these existed seven years ago when I had mastectomy. They were just not on my radar because I wanted the option with the fastest recovery as the girls were so young at the time.

This time, I will be going with a DIEP flap reconstruction. Because of the microsurgery done to reconnect the veins, this is only done in certain hospitals. UW and Froedtert are the only locations in Wisconsin that due this surgery. Two surgeons work as a team to dissect the abdomen separating the skin, muscle, and fat, then work to reattach it to the blood vessels in the chest. The surgery takes anywhere from 8-12 hours depending upon the conditions they find with the blood vessels when they open up. I can expect to have 6 drains for the first few weeks. I will have a new incision hip to hip across my abdomen, but they will be able to reuse the original incisions in my breasts.

I will be traveling to UW Health Hospital in Madison. Dr. Affifi and Dr. Michelotti will perform it. I will be in the hospital 5 days and then will likely be out of work for 4-6 weeks. I hear I might be under the care in the hospital of a friend who works there and will be on that same floor. Hopefully, he can sneak me extra jello or the good socks.

Because I have already had the mastectomy portion, my recovery maybe different--hopefully better! Doctor says plan for 6 weeks, I say that I heal better than most, so I am planning for 4, with maybe going back half days for week 5 and 6.

The major risks with this surgery are the new flap dying after it's place at its new location. This could happen because it doesn’t get enough blood supply or forms a blood clot where it has been reconnected. Infections are always a concern with any surgery and the large incision needs to be allowed to heal safely avoiding infection and the wound re-opening.

Most women who have this type of reconstruction, end up having another minor revision surgery 3-6 months down the road to repair little things that didn't quite settle correctly. My plan is to combine the revision surgery with step 2b, which originally started me thinking about my BRCA this summer. They usually have to do some revision to the abdominal scar and this will be the perfect time to remove my ovaries and do the preventative hysterectomy at the same time.

Thankfully, I have a support of so many around me throughout this! I have one friend who went with DIEP at around the same that I had my initial mastectomy, and another that reconstructed this way just a year ago. I also have a great community of women through a facebook groups who are all BRCA+ or who've had DIEP. I feel like I know what I'm getting myself into and am ready! I'm just waiting on the scheduler to coordinate the surgery date.

I'm going back in

I’m going back in. I feel like I’m coming in off the bench, coming out of retirement for one last hurrah, or some action movie star diving back into the scene to save one more person. But of course it’s not sports or action scenes for me, it’s back to the BRCA and Breast Cancer related journey that we all thought I was done with.

A couple of major things have occurred in the last few years. First, If you follow cancer in the news like I do, you’ve probably heard that there was a recall of silicone breast implants. The recall happens to be the make but not model of my implants. In the US, the FDA has recalled only several specific models of Allergan implants. These implants are causing Breast Implant Associated Anaplastic Large Cell Lymphoma (BIA-ALCL), which is a unique form of lymphoma that only occurs In those that have breast implants. As of July 2019 there had been 573 women diagnosed with it, including 33 deaths. All of these women had breast implants, but 481 of them had Allergan implants. The FDA requested in July that Allergan recall certain implants, which they voluntarily did. However the FDA recommendation is actually not to remove the implants until you are exhibiting symptoms of lymphoma. Yes, you read that right. No need to remove until you show signs of lymphoma. Seriously the FDA is telling women who have already been through treatment for breast cancer (because silicone implants are only available for those who have been through treatment) to just wait and see if they develop lymphoma!

The French government and 33 other European countries however have recalled additional Allergan implants and banned the sales of ALL implants produced by this company and refused to give them approval for future sales until they prove they are safe and comply with their set standards of proof. This was almost six months before the FDA made their stance known. 

So, are mine recalled? No, they are not in the US recall list, but they are on the European banned list. If you hear me talking to some about what's coming up for me, you'll likely hear me say that my implants have been recalled. It's just easier than explaining everything surrounding the recall and everything else that went into making the decision. 

What else do you mean? I’ve also experienced a couple health things over the last few years that have made me wonder if breast implant illness could be a factor. I referenced some thyroid issues, sudden onset of allergies, random skin rashes, adrenal issues, and alopecia on my yearly posts. I've worked hard with doctors over the years to balance out my hormones so that I can sleep normally as I've had times when I was so tired I could fall deep asleep at 4pm and other bouts of insomnia where I felt as though my brain and body were moving 1000 mph all night long. When I first started seeing a naturopathic nurse practitioner about this, she said right away, "Have you thought about it being related to your implants?" After everything I'd been through with recent surgeries, it was not going to be my implants in my mind. She was able to help me stabilize everything and get off of thyroid medicine, but a mystery liver enzyme consistently came back as high throughout maintenance. Doctors move and insurance changes, so three years later I had to find another doctor and was able to find a great Integrative Medicine specialist. I originally went to her because I was considering step 2b (removal of my ovaries) and after everything I experience after my year of surgeries, I wanted advice on what to do so that I don’t experience all the mess again. When reviewing my medical history her first question was, “Could it be your implants?” New Ob/Gyn visit this year and she also questioned the implants as the cause of what I have been through. The liver enzyme is still high and this doctor likes to check C reactive protein as well. During the appointment to review my lab results, she actually said, “Holy shit that’s high!” Apparently, it’s the highest she has ever seen on a patient. It’s a marker for inflammation within the body. That was finally enough to make me actually google Breast Implant Illness and check, check, check, check so many of the symptoms listed match what I’ve been dealing with!

However breast implant illness is a controversial topic as it is not recognized by all in the medical community because there is currently insufficient data linking the onset of symptoms with breast implants. The thought is that our bodies are rejecting the foreign objects in our bodies and come up with these autoimmune responses as their attempt to get rid of them.

Added to all of this is the general issues that come from breast implants. They are COLD! They are under my muscle, which means whenever I do something that utilizes my chest muscles, I have significant pain as the muscle tries to repair itself. This occurs whether during exercise (in which I already avoid push-up or anything directly chest related) or just life relate like shoveling snow or digging up plants for gardening. They have an expiration date anyway, so at some point they’d have to be replaced. They require annual MRIs to ensure that they are still in one piece and I have lovely reactions to MRIs.

So, I’m just ready to be done with them. I'm officially working with UW Health to figure out when my implants can be explanted and I can try something new with reconstruction!