Because life

Life never goes as planned. Just when we think we have everything figured out another curve ball gets thrown our way.

Megan joined me for another trip to Mayo yesterday. With her the almost 6 hour drive goes by quickly. Car dancing and lunch meat sandwhiches out of my trunk, and enough caffine that we remain wired all day. I've learned to make the best of things. You only live once right?!

I'm the girl that takes heels and a black jacket looking for the perfect location to pull over and snap a few photos. My body is about to change again. After next week my clothes will fit differently, my silhouette will change, and I will have completed another win. The winning location?? The rocks leading to the Mississippi river at the rest stop right before crossing from Minnesota back into Wisconsin. There were unsteady footing, fear stricken wobbles, snakes, and the most glorious view. A view that filled my soul and reminded me how infinite we truly are. If we aren't living, we are dying.

We arrived at Mayo with just enough time to hit up Starbucks. It's become part of our routine.

We enjoyed some time walking around downtown and soaking in its beauty.

Before I knew it, it was time for my chest MRI. They got my iv in, and took me back for a very uncomfortable 40 minute stretch. Laying on my stomach, with a bar going down my sternum separating thing one and thing two as they hung through little windows to be scanned. My sternum is still sore from it. I never wanted the MRI. I felt it was a waste of time, and an unessecary procedure that would reveal multiple necrotic fat cysts.. just as I had been told for the past six months. As directed by both my breast health Dr and my plastic surgeon I agreed to the mri to be safe. They were concerned and said the lumps just didn't fit the criteria of fat cysts.

Before heading home we enjoyed the most delicious dinner on the outside patio of The Half Barrel.

We finally made it back home around 1 am. My bed never felt so good.

I didn't expect the results for a good 48 hours, and I was certain the scans would come back clear so I didn't think much about it. Then I got the phone call. I was at Wal-Mart getting groceries for the family in preparation for next week's surgery. I never expected what happened next. Aside from the large number of cysts, My mri showed a sizable concerning mass on the right side. I was asked to come back to Mayo tomorrow! They want/need to see me to do an ultrasound and biopsy of it before surgery next week. If it is nothing to be concerned of then surgery will remain set for next week. If not, well then we cross that bridge when we get there. I'm exhausted in So many ways, yet have turned my emotions off. I don't have time to feel right now. I don't get to be affriad or play the "what if" game in my head. To me, this is another precautionary step to complete to be ready for surgery. Everything will be ok, because I'm here, and I'm alive. I've got my gas tank filled, a cooler of coconut water energy drinks, and am ready for trip number three. My mom's joining me for this one. I have to leave tonight around 2am, to make my 930am apt in the morning. I don't even know how to feel, so I feel nothing. This mri was supposed to be clear. But life is funny that way. I am doing ok, and I'm taking it all in, one step at a time. Just as I always have.

And so the journey continues

I don't even know how to start this blog. I've tried writting it in my head a million times. I know you have all been patiently waiting, and thank you for giving me the space I needed to wrap my head around the next step. I just don't know where to begin. It's been a long long 4 years. I can't even describe the pain you feel when you have a mastectomy. You say it's not that bad, but you hope like hell the pain meds cloud your memory of it enough that you don't remember much. Once the worst is over, you think you've reached the end of the road, yet you turn the corner and there's another long stretch, and another, and another, and before you know it you've been driving for years, unsure of where you are, or where you're going. It's sort of like that after a mastectomy. It is more than anyone could imagine. It is complex, and unique to every individual. Some have a longer race than others. One thing I know for certain is that a mastectomy is not an end, but the start of many new beginnings. Each better than the last.. but for no reason other than the idea that things will get better after this. So you continue to push, even though part of you doesn't want to.

Often times I feel as if I've been stuck on a carousel, dizzy and unable to climb off. I want to, but I can't. I want to leave this all behind me, but my journey isnt over just yet. You can't run a marathon and quit during the last mile. I never imagined things would be like this. I knew it wouldn't be easy, but I also didn't imagine 8 surgeries. I pretend to be ok, but there have been moments I've been in so much pain I've literally felt insane. It has been so intense and nauseating at times that every part of me hated every part of them, and I wanted so badly to rip these implants from my chest just so I could breathe. My implants are beautifully constructed torture devices!! The weight of them is suffocating. Yet, while I hate them, I also have grown to love them. They have been part of my reflection for two years now.

Fake it until you make it has become my way of life. I've gotten pretty damn good at it too!! But, every so often I can't take the pain anymore. I tell myself it has to get better than this. I swallow my pride and call my Dr for an appointment. I have anxiety every time I walk into her office. Its the same thing every time. She tells me I shouldn't be in so much pain, it doesn't make sense. This last time she upped my gabbapentin and told me that I will never be the same again and at some point I'll have to accept that this is as good as it will ever get. I'm reminded I'm one of the 30% of women that has post mastectomy pain syndrome. This is my life now. She tells me I shouldn't be running, "it's bad for your knees anyway." Running is my passion, I need it back in my life. I've asked about the mass number of lumps developing in my chest and they've been said to be necrotic fat cysts, a side effect from the fat transfers I had. She says the lumps are just part of me now. So I ignore them, and pretend I can't feel the pain, I wear a smile, and refuse to let anything hold me back from the joys of life. This is the only life I have.

A friend and fellow mastectomy warrior reached out to me and encouraged me to see the plastics team at Mayo for another opinion. I contemplated the idea for some time. What did I have to lose?? The idea of being told the same thing as my Dr here has been telling me for the past two years terrified me. I didn't want to waste the time, and resources to travel all that way for nothing. With the love and support of my friends and family I decided to give them a shot. It was at that appointment that my entire world changed.

I LOVED everyone on my plastic surgeons team there at mayo. They were genuine, and had every bit of confidence that this is not my forever. I have a chance at a pain free life!!!! I am nervous about the road ahead of me, but I know, in the long run this is the best decision. I Will be traveling back to Mayo Monday for an MRI on my chest. My Dr there is very concerned by the number of masses I have acquired, and says they do not meet the criteria as being necrotic fat cysts as my Dr here has pushed them off to be. So that's step one. If my mri comes out ok then we continue with the next chapter of my story.

Mayo will become a second home, with a team that will feel like family. The journey will become routine and will be the subject of many car dancing, starbucks drinking, hotel staying adventures. It all starts now. They want to do surgery Sept. 7th, which is coming so insanely quick that I'm freaking out a bit. Never did I expect to hear there is a solution to the chronic pain I've lived with the past two years. The issue is simple. I'm tiny, and currently have giant implants placed UNDER my muscles. Not only are they too big for me in general, but they are too wide for my chest wall to contain. My muscles can't tolerate being constantly stretched over them... it's too much for my body and it's unnatural. Many surgeons don't even use this form of reconstruction anymore.. yet here I am. This is partly why I'm so uncomfortable and why simple daily tasks cause such nauseating pain. Things as simple as washing my hands, or cleaning the counters morph my implants in ways you couldnt believe. I excepted that this is my life. I have been living with a 25lb weight limit, and restrictions where my chest muscles are involved. (I really miss lifting weights and doing pusshups). The idea that I was given such large implants without choice really upset the team at Mayo. They appolgized for my experience and said while this may not eliminate all pain, I need to have the procedure done. These are too wide and too heavy for my small frame and should never have been placed on my body. So the day before surgery we will meet and together, my surgeon and I will pick a smaller more proportionate implant, with the perfect width, shape and projection for my body. I'm currently a large 32ddd. I would love to be a nice 32d again, as I was before this journey began. She will do a total reconstruction of my chest. She will relieve my muscle of it's strain and place it comfortably back against my chest wall, as it should be. My new implants will be wrapped in cadaver tissue and placed above my muscle in a nice new pocket. By going smaller and having to minimize my skin folds, I will lose my nipples...again. and be left with smooth bare skin mounds. I'm a bit torn, I hate them, yet they were my medals. Keeping them would mean a different inscicion and scar, and the risk of them sitting incorrectly once I'm healed. So I've opted to let them go, let my mastectomy scars go, and start fresh. I will be coming home with drains again, and starting another long six week recovery process. An amazingly talented friend of mine will be doing my nipples this time around. He can provide me with something greater than any cosmetic tattoo "artist" ever could. I'm nervous, terrified, excited, not prepared, yet more than ready for this. So here we go... #bulletproofonanotherlevel

If we're not laughing, we're crying

Yesterday my great friend Megan and I hit the road at 3am for the journey to Mayo hospital in Rochester,MN.

We walked around down town, drinking coffee and chatting with strangers. A wise man shared his journey with us, and reminded us that if we arent laughing we're crying. That moment will forever be engraved into my soul. I walked into my appointment, unsure of what to expect. Meeting with the breast health team was a required standard protocol that would earn me a referral to the plastics team if they felt it was a plastics issue. However, when I had spoken to them on the phone, they had expressed concern on my pre breast health, multiple hamartomas and questioned my having them elsewhere. I was nervous of the answers this trip could provide. I hoped they would be able to tell me that they've seen others like me before.I hoped for answers, even though I never wanted this appointment in the first place. It was a long day full of many (tired, over caffeinated) emotions. I left my appointment in tears, trying to get as far away from the hospital before I let them fall. I was a mess, I couldn't breathe and I tried so hard to keep the brewing panic attack at bay. I could feel myself slipping.

My visit with the breast health clinic didn't go as planned. My Dr told me that because hamartomas are so rare, doing any scans to look for them would be too confusing. They don't really know where to look and what to look for. So I will continue to live with whatever disease this is, and be treated when and if new symptoms arise. She wanted me back next week for a mri of my chest wall and at that time I would visit the plastics team. I felt like I couldn't breathe. I felt I made this trip for nothing. I felt lost, and alone as a mystery, just as I always have. I couldn't stop the tears from welling. I wanted to get as far away from the hospital as I could, and never go back. How could I force myself to come back next week?

We got back to our hotel and I took a step back. I walked next to the lake to sit for a while. And. Just. Be. I looked up at the blue sky, and suddenly it all made sense. If we are not laughing we are crying.

In that moment, I was able to catch my breath. I realized my emotions totally took over and I lost sight of what brought me to Mayo in the first place. To see the plastics team for a second opinion. In order to see the plastics team, I had to see someone from the breast clinic to refer me.. to ensure it was a plastics issue. It never mattered how the apt with breast health went. I don't have breasts anymore. There is nothing they can do for me. As for the mri, I'm supposed to have one every 5 years to monitor any damages or changes to my implants or chestwall. At this time, I have decided to opt against the MRI until my 5 year mark. Medically speaking I'm stepping off this carousel. No more needles, no more tests, no more trying to find which .3% of the population I belong to. I am a mosaic. But I am not alone. I don't need a diagnosis to remind me if that. I called the hospital to give my decision and asked if plastics could see me today. They had a cancelation earning me the time to meet with the plastics team this morning at 10. Not with the Dr I had hoped for, but I imagine they are all great. I'm walking in with an open heart and clear mind. It is possible that this pain is my new forever. But I've traveled all this way, the least I can do is see what they have to say. So. Here goes nothing... To be continued.....