My Health & These Damn Boobs | chapter I

~ In a world where death is the hunter, my friend, there is no time for regrets or doubts. There is only time for decisions" ~ 

-Carlos Castaneda-

Before I really get into why I am writing this post, I want to remind you - my lovely reader - why it is that I started my little verbal outlet. I named this blog Just Faking It because we are all faking it. None of us know what the hell we are doing. None of us know what kind of curve ball life is just waiting to lob at us when we are distracted and paying attention to something else. There is no manual on how to adult. We simply don't know when, or how, our lives will evolve or change. Like it or not, we are all just along for the ride and really don't have control over a whole hell of a lot in this life, save for how we react to it. It is in the reaction, we have a choice. Buckle up kids.. this is going to be a long one.

My health has always been one of my biggest practices in patience, impermanence and non-attachment. I have, throughout my life, been dealt confusing hands when it comes to my overall health and well being. In my mind, I like to think I have handled it all pretty well; in truth - and in clear reflection - I have not coped with anything, I have tucked it all away in my mind palace. Hoarding my emotions, not talking about my experiences, making a choice to just keep on moving forward. One foot in front of the other. But this time is different. I am older, wiser <insert laughter> and generally more open to evolving and growing into the healthiest strongest person I can be. In that vain, I am sharing my current chapter.

A brief back story... My body likes to make tumors. So far, I have been very lucky in that none of them have come back as malignant. The first masses were removed when I was 18, one week before my 19th birthday. Back then I was told the masses were pre-cancerous and needed to be removed to make sure they didn't grow into something nefarious. Turns out, science later proved that the type of mass will not turn into cancer, but the lumps were already gone and the scars on each breast already healed. My 20's and 30's have been marked by the standard ups and down but also peppered with, "we need to biopsy this mass"and then seasoned with "this mass needs to be removed". I honestly could not tell you the exact number of biopsies I have had performed on my breasts up to this point, but I know it is more than 15.

After moving back to Colorado in 2013 I got very sick. The doctors were confused (as they often are with me and my health) and at first thought it was chronic altitude sickness, that my body wasn't making enough red blood cells to adapt back to the Colorado altitude. After 6 months of fainting and imaging they discovered an orange sized mass in my uterus and one on an ovary. The gave me a choice on how to deal with what they had found... scary ass drugs with side effects that would shock you or a hysterectomy. I chose the hysterectomy. Around this time my medical mantra became "solutions not treatment of symptoms". The surgery and healing was about what I expected. However, the mental healing is still an on-going project. I learned a very valuable lesson through this, I suck at reaching out and asking for help. I also learned that most woman that go through similar issues never, ever, talk about it. We endure, one foot in front of the other.

So when this new round of nonsense started I fell back into my old patterns. Remember... we are all just faking it and sometimes life is a practice.

At the end of May I went in for a yearly physical. I had blown off my regular screening last year because I was enjoying life and figured I was fine. I felt fine. Hell,  I had backpacked from one rim of the Grand Canyon to the other. It had been two years since I had been screened. During the physical my GP asked me if I had anything I was concerned about, so I casually mentioned the lump I had been feeling in my right breast for a few months. I knew the drill, mammogram and then ultrasound. Always the same. I got scheduled for the following week for the mammo. That was June 6th. I went in and chatted up the nurses and radiologists, honestly not taking much seriously at this point. It wasn't until the 4th time I was called back into the mammo screening room (during this first appointment) that I felt like something might be up. That something might be different this time.They sent me over to the ultrasound room because they needed to do that now too. Immediately. Again, not surprised but my intuition was definitely working overtime.

The nurse got me set and the Radiologist came in. She did the screening, grabbed a chair, rolled to me and grabbed my hand. "Jen, this doesn't look good and you should prepare yourself". Well, shit. Then, "are you available tomorrow at 1pm for a biopsy". I was, and got scheduled. After that first biopsy of this round, the Doctor decided I also needed an MRI to get some very clear imaging while we waited for the biopsy results to come back. The MRI was done Friday (of the same week). Again, totally 'routine' feeling. Went and had the images taken and went back to work. I received a call 5 hours after informing me that they found 5 more masses. 6 total now, 3 in each breast. I guess anything worth doing.. am I right?? <-- humor...

Through the following weeks I went through a total of 8 biopsies, 3 MRI's and honestly lost count of all the imaging. The results came back either a type of fibroid or as a complex sclerosing lesion. But no cancer. I am sure you can guess the mental toll this is all taking. I limited the people that knew about what was going on, looping in a few friends, my parents & my partner. It was just too hard to talk about, yet it was all consuming. From the 6th to the 26th my boobs took a beating. They looked like they had lost a knife fight.

After I finally got through all the 'diagnostic' I was set up to meet with the Breast Surgeon. He is the same one that operated on me in 2015 when the last lumps were removed. He is wonderful, and we had a very long appointment talking about my situation and options. In the appointment he told me that he didn't know how I found the mass that started this whole adventure because of the density of my tissue. He shared that with my health history to date that he had no idea what the 'right' plan would be and asked my permission to have my case presented to the breast cancer board at the hospital where everything would be discussed, and they would come up with treatment plans. I both felt relieved and really, really worried. The doctors on the panel, many of whom had seen me during June diagnostics, came back with a recommendation for me to test for BRCA mutations and schedule to remove the two most concerning masses. One of which they were pretty sure was a complex sclerosing lesion, and while it is not cancerous, it can hide cancer cells. The other they were not sure what it was. Then regroup and make a new plan when the pathology comes back.

Now we are into July. I had surgery to remove the two masses. Immediately following the surgery the Doc went out and spoke to my partner to let him know how things went. He shared that he had to cut through many cysts and fibroids to even get to the stuff he was trying to take out. Once he got in there he wanted to help me by cleaning it up but couldn't because of how much he would have to take out to make it "clean" in there.

It took a week to get results. I physically heal quickly, I don't use chemical pain medication and swear by cannabis for pain and inflammation. My body rebounded. My mind.. not so much. Waiting a week is bad, bad, bad stuff for a creative mind. The results came back that they were both complex sclerosing lesions and no cancer found. Relieved and so frustrated. At the advice of the board - whom I refer to as the meeting of the 'ologists' - I went and had the BRCA test done. My results were negative. Relieved but frustrated. I just want answers, a plan and some peace when it comes to my health. I wanted, needed, something to do battle against. Not the ghost I was fighting. 

The board met again to review my case now that we had all the testing, imaging, biopsying, pathology (etc.) reports. At the beginning of August I got the phone call from the care coordinator that they had met and came up with my choices and a statement. The statement: "you are high risk and un-screenable"... the choices: I can have an MRI and mammogram every 6 months from now until the last breath I take or I can move ahead with "additional surgery" that they deem as preventative treatment (medicine).

In that moment I had only one thought, if I have no uterus or ovaries and then have a bilateral mastectomy will I still be a woman? Even typing those words here, now, it makes me cry. Even thinking those words makes me cry. The wonderful care coordinator suggested that I scheduled with the plastic surgeon so I could get all the information I would need to make a choice. 

So I did what everyone does to start their research, I started Googling. Leading up to the appointment I searched every key word I could think of that related to my situation - no BRCA, no Cancer but high risk & un-screenable - as well as the actual surgery. I found stories of people that were sorta the same, or at least had some similarities. But nothing that was the same as me. When I would watch videos about mastectomy and reconstruction they would use the word cancer 20 or 30 times. But that wasn't me. They would talk about BRCA diagnosis or their mother or sister dying. That wasn't me either. While I do have a family history, its not a first degree one. I wanted to be educated enough that when I met with the surgeon I could ask questions to help me in deciding. Problem was, the more I researched the more questions I have and the less I felt sure of what the right choice would be. If there even was a 'right' choice.

After meeting with my rockstar surgeon, both my partner and I felt much more comfortable with what now seemed inevitable.  So I scheduled it. My boobs have been voted off the island. While I am fully aware that nothing in life is a certainty,  I have a profound hope that this will give me my best shot at longevity and health. 

On 10/4 I will be checking into the hospital for the first of two surgeries to remove my breast tissue and then reconstruction them into boobs 2.0. (I thought it was pretty funny that I kept wanting a sign that I was making the right choice and got scheduled on 10/4.. the universe must be saying, yes, right?) Even when I am rolling into the operating room I don't know that I will be 100% that I am making the 'right' decision, but it is the decision that will hopefully provide me with the most peace and the greatest shot at health. The first surgery will be hard, recovery the first 3 months even harder. But nothing good came without a bit of work to earn it.

So if you have made it this far let me bring you into the current, present, moment. I am writing this today because I wanted a way to share with my extended friends and family what has been going on, without having to have the same conversation over and over and over again. I am writing this so it is Google-able, so that others going through this might have a shot of finding it and knowing that they are not alone, that just because it isn't cancer doesn't make it awesome, or easy, or any less scary when your body turns on you. That you can be really pissed off about your situation and that it is ok. I am writing this because while I am healing I am going to need a whole lot of help.

For the first 2 weeks I will not be able to use my arms at all until the drains are removed. I will be needing help with literally everything. From weeks 2 until 6-8 I will have t-rex arms to do a small amount of things but not cooking or anything that requires use of the upper body. Driving will be out for 4 to 6 weeks. Maybe longer. My partner and parents will be taking on a lot and I am putting it out there here and now that I am accepting any help offered. Whether sitting with me and binge watching something (also taking advice on things to occupy my eyes), going for walks once I can be up and moving around, help driving me, grocery store runs, meals, walking Jax... pretty much, you name it and I will need a spotter. My Mom is organizing Meal Train to help too. This asking for help thing is probably one of the hardest parts of this whole shit show adventure I am finding myself on. But, its all a practice right..? And, we are all just faking it anyway.

I plan on blogging my way through this and have the hope that someone out there will find it and it will help them. If you are reading this and you want to talk or ask me questions please feel free to reach out. No matter how many years after this is published.

There is a lot of good to be found while going through this experience. I am very, very, very - I really can't say it enough - very lucky and grateful for the amazing nurses, doctors, schedulers, care coordinators, friends, family, employer and random strangers that have been such a support through all this. They are all amazing and without their support (and humor) I am sure I would be much more of a mess.

So here I am, a few weeks out from a year of upheaval and change, and some really hard-core faking it... here we go...