Update on my journey with fibromatosis

Yes, it is Fibromatosis as the biopsies suspected.  And yes, it is a journey.  I had my lumpectomy surgery on October 29, and I thought that was going to be the end of it.  Unfortunately, it's not.

Considering this isn't technically a form of cancer depending on who you talk to, it certainly acts like a cancer.  My pathology report and surgeon told me that I don't have clear margins, which I'm pretty sure she knew when she was doing the lumpectomy.  It had already grown way too big.  She took out three different pieces of tissue, one measuring 9 x 2 x 2 cm.  And the margins still weren't clear.  It's still in me and needs to come out.

My whole breast needs to come out.  I found out a few days ago that I'll need to have a mastectomy.  I already suspected that when my surgeon told me that I would need to have more surgery, because she mentioned having me talk to a plastic surgeon.  So when I heard that word in the doctor's office, it didn't shock me as much as it did my mom.  I guess this is one of the times that my "jump to conclusions and expect the worst" nature was actually helpful.  The only thing I didn't expect was that my nipple won't be spared.  (I figure since you all already know I'll be losing my breast, might as well say the whole truth.)  That part was really sad to me at first, but I'm feeling a little better about it and about this whole thing.  I am so incredibly blessed to have people in my life who have been supportive and understanding.  I am very lucky to have a wonderful community of online breast cancer survivors to talk to about all this and get advice from.  And, as unfortunate of a coincidence as this is, one of my neighbors who I have known my whole life (I was good friends with one of her sons when we were younger, and my brother with his brother) recently had a mastectomy by my same breast surgeon and reconstruction by my plastic surgeon.  She has been a great resource to me and I'm sure she will continue to be, helping me along this journey with advice and encouragement and complete understanding.  I also really like my breast surgeon and my plastic surgeon.  Both are very kind and caring people, and I am hopeful that at the end of all this I will feel almost whole even though I'll only have one real breast.

Since I won't have a nipple, I've been weighing my options - try to have it reconstructed out of skin/tissue, have it tattooed on, or go without one.  I hadn't even considered the idea of having an artistic tattoo done to cover the scar until my neighbor told me that that's what she was thinking of doing.  I LOVE that idea!  I keep looking at pictures online of tattoos covering mastectomy/reconstruction scars, and I really like some of them.  I know that whole part of this journey isn't until months down the road (at least), but you know me, I love to plan ahead.  I've already been thinking of what I'd want my tattoo to look like.  I'm not sure if that's what I'll end up doing, but I like the idea for now.

My mastectomy is scheduled for December 27.  Just in time for new years!  Haha.  So much for my new years plans.  At least I'll be able to celebrate Christmas like a normal person - I'll just have to celebrate new years a little early this year.  While I'm still under from the mastectomy, my plastic surgeon is going to come in and place the tissue expander in with a small amount of fluid.  So I won't be completely flat when I wake up, just mostly flat.  After that I'll have to stay a night in the hospital; unless I feel like a "rock star," then my plastic surgeon said I can go home that day.  But I'm thinking I'll have to stay overnight and I'll be able to go home the next day.  The recovery time for this surgery will be longer than my lumpectomy, it will take about a month before I can go back to mostly normal activity.  The first two weeks I won't be able to do much of anything.  I'm glad the new Kindle HD that I want will be out by then, since I'll have a LOT of downtime.

Then, gradually over the next 3 or 4 months, I'll have my expander filled with saline.  They have to do this over time because there won't be much tissue to work with after the mastectomy.  Once that process is done, I'll have my exchange surgery and the expander will be replaced with a "permanent" implant.  It's not really permanent since I'll have to have it replaced every ten years or so.  Then once I'm all recovered and healed from that, I can figure out what I'm gonna do about nipple reconstruction or tattooing or whatever.

All this fun stuff going on has been really bad timing with my just getting hired back at the racquet club a couple weeks ago.  It's just been too stressful with all the appointments I've been going to, researching, talking to genetics counselors (since fibromatosis can be linked to Gardner's syndrome, I might have to have some tests done to make sure I don't have that), and planning surgeries.  I gave my two-weeks notice.  It feels weird since I just started there, but I really need this time to focus on me, my family, and my school.  [Side note: I've been taking classes at CRC because I've decided to pursue my old dream of nursing.  Especially since my experience with so many nurses from this whole ordeal, it's just made me want to do that even more.  I love the idea of being able to help people the way they have helped me.  I know that's a bit of a step from my Aquatic Biology degree, but it's not too far from it with all the biology classes I took in college.]  And once my classes are over in December, it will be nice not to have to worry about work at all while I'm preparing for and recovering from surgeries.  My boss was very kind and sympathetic.  She told me they were going to miss me there and that once this is all over, they'll be right there waiting for me to come back.  It is comforting to know that I'll still have a job there if I want it after I'm healed.  I am glad that we ended on good terms and that this might not be the end, depending on what's going on in my life in 6 months.

I'll try to keep this updated throughout this process.  I know this is a really rare and unique situation for me to be in, but breast cancer isn't as rare and it can happen to anyone.  I will stress again to everyone: pay attention to your bodies!  And check your breasts monthly!  Even if you're young like me, it is important to be aware of any changes in your body.