Sunday, December 6, 2015

Today I turn 35

As I write this I have one full hour until it is my birthday.  My 35th birthday.  That birthday.  I think we all must have that age and that birthday that throws us for a loop.  That age we reach that we never thought would really come. That age where we would feel this way or be that person or have that thing.  35 is that age for me because that is the age where my life will change forever.  Things are about to get real, real serious. I am working on a blog post called My BRCA Journey (My BRCA Journey Part One  I should be done with it in the next week.  But in short, I am BRCA positive, and am having the recommended by age 35 prophylactic surgery in the next couple of weeks.  This will change my life, forever.  I have made this decision over and over for 8 years, but somehow now that I am here it seems as though the years have flown by and all of the sudden we are here.  In this moment. 

For this moment, where I am still 34 and things are still the same, I will take a moment.  This year of being 34 has been one of survival. I have done very little growing.  But my roots have grown deep and I feel the earth surround me.  I have become grounded in so many ways.  I emerge from this year feeling comfortable in who I am,  and what I am.  I strive for more, take every opportunity to reach for growth, and ponder on areas for opportunity. But if all I can do is survive, I'm OK with that.  I am OK with me.

In my new year I look for peace and grace within myself.  Grace to not hold myself to an unattainable or unrealistic set of standards.  To have goals but also to  allow time for freedom.   To allow space for life to unfold, perfectly unplanned.  I pray for a continuation of faith and eyes wide open see and experience blessings and miracles. I wish for patients and unending streams of gratefulness.  Happy 35th Birthday ... Relish it!!

Wednesday, December 2, 2015

My BRCA Journey Part One

As a women I have come to understand we are verbal processors.  We need to talk, think and write through things.  I have been on a path through this journey for many years, and am coming to a critical turn in the road.  I am choosing to use this vehicle, this blog, which has helped me process through so much the past few years, process through this next journey. 
My BRCA journey started 24 years ago, when I was 11 years old.  At 46 years old my Mom was diagnosed with breast cancer.  My Mom was great, brave and incredibly strong, as I have very few memories from this time because for me life continued to be pretty normal.  A lumpectomy, emergency surgery for a hematoma, chemo, radiation, my mom had it all. She worked the entire way through it and continued to be the greatest mom to me and my sister who is 3 years older. It wasn't until years later that I realized how much she must have gone through during that time. 14 years later, on the cusp of my matrimonial bliss to my best friend, my mom was diagnosed with stage 3 ovarian cancer. This time, I was a full adult, and was able to walk hand in hand with her through it all. That time includes some of my best and worst memories in life, but it made me who I am today. I was engaged in December, my mom had surgery in January, and as she recovered in the hospital from a complete hysterectomy, I filled out my nursing school application. Somehow that diagnosis pushed me from thinking about it to having no doubt nursing what I was meant to do.  As my mom begin chemo treatments, I learned that I had been accepted. The monthly visits to get chemo were some of the most scary but fun times. As we sat through the infusions, we planned a large part of my wedding. Many of the oncology nurses wade in on this decision or that.  As she and my father walked me down the isle on my wedding day, although beautiful in her off white suit and perfectly styled wig, she was completely bald.
During that time one of the physicians suggested that both my sister and I get tested for the BRCA genetic mutations. For some of you who have not heard of this, it is a irregularity in your genes which causes a great increase in risk of getting breast and ovarian cancer. Both my sister and I were tested, and of 50/50 odds, we both tested positive.  My wonderful husband knew when he married me that this was a possibility, and has walked every day with me hand in hand since this diagnosis.  We have talked many times about all the risks, complications, and possibilities that lay ahead. There are two routes to take upon getting this diagnosis. There is high surveillance, and there is prophylactic surgery. I knew from the moment that I was diagnosed, even before I got my results, what I would do if I came back positive. I hate the feeling of knowing that my time is coming. Every weird pain, cramp, weird skin lesion, common symptom, leave a question in my brain whether today is my day for cancer. I have known for eight years that I would have prophylactic surgery at some point. Now that that time has come, it is scary as hell! Since my diagnosis, I have been under high surveillance. In between children and breastfeeding I have been poked and prodded, scanned and ultrasounded, and been to the doctor for more time than I would like to admit. It is never far from my mind about what the results of any of these tests could be. I believe that once my surgeries are done, I will exhale for the first time since I was diagnosed.
The prophylactic surgeries include a total mastectomy and a bilateral Salpingo oophorectomy. I have researched both of these surgeries in great detail and have come to a decision that at this time in our lives, only the bilateral salpingo-oophorectomy is the right choice for me. With my husband in full-time school, my income is the only source for our family, and the nature of my work, I have some serious concerns about the intensity of a total mastectomy. There is a lot of healing time, risk of infection, and a lot of follow-up care if I choose reconstruction. I don't feel comfortable taking that leap knowing that if there was a complication, it would mess up our time line and frame for our life plan. I choose a minimally invasive, robotic, laproscopic, outpatient surgery. If everything goes according to plan I should be back to work in 4 weeks. Having the surgery in of itself reduces my risk of breast breast cancer at this time by 50%. I feel very comfortable with the screening techniques for breast cancer and if something were to mutate prior to a complete mastectomy, that it would be caught early and in a curable stage. There is no good test for ovarian cancer, and frequently when it is found, it is in a late and hard to cure stages. That scares the crap out of me. Because I'm choosing to only take my ovaries and fallopian tubes and leaving my breasts at this time, I am not a good candidate for hormone replacement therapy. That means from the moment I wake up from surgery, I will be in full blown menopause. Every woman has a different experience with menopause, but I am bracing for the worst. That way I will be pleasantly surprised when it when it's nothing like I imagined! There are some options for people in my situation to lessen the side effects of menopause. Hot flashes, night sweats, insomnia, mood disturbances, and a decreased sex drive are just some of the fun experiences I am looking forward to! Working with my primary physician I am going to be starting an anti depressant / anti anxiety medication called venlafaxine, and an anti seizure medication called gabapentin. Both of these medications have shown to have a beneficial side effect of decreasing hot flashes and mood disturbances and improving sleep quality of menopausal women. It has been suggested to me at different time periods of my life that an antidepressant would be a benefit to me, and I've always been very resistant. I always felt as though my anxiety and mood disturbances were situational and never a true chemical imbalance. With as much life that sits on my plate at this time, I want to give myself the best chance for success in the coming years. I need to be functional in my everyday life as a mother, and night shift worker, a nurse and a wife. Whatever I can do to help lessen the severe effects that I will have coming out of surgery, the better! I'm hoping that these medications are not a lifetime commitment, but time will have to tell. My primary physician says that so many people feel so good on these medications that they often do not want to come back off.
Sometime late this summer it struck me that I would be turning 35 this year. 35 has seemed to be this far distant age number that I would never reach. I was told when I was 24 years old, that prophylactic surgery would be recommended by the age of 35! I had a lot of life to live!  In eleven years I got married, had children, made sure we were done having kids. Logan ensured that fact in both our hearts and minds. The idea for surgery went from "oh yeah someday I will get to that" to "Oh man I better start researching that". I started having some consultation appointments, looking at my benefits, figuring out a time frame and read whatever I could get my hands on. After meeting with a wonderful breast surgeon, I took a step back. I wondered what was my rush? Yes all the research showed that 35 was a good age to start having prophylactic surgery, but nothing said waiting until I was 40 was going to double or quadruple my risk. I had a wonderful phone consultation with my genetic counselor, and came came out with a lot of food for thought. I digested all the information that she said over the next couple months. Basically my curve for probability of cancer did not suddenly start a huge upswing once I turned 35. That was the beginning years were they saw some early onset breast and ovarian cancer. There was nothing to say that waiting a few years, and until Heath was done with school, in a stable job, and my kids were a bit older, would be a dangerous decision. The more I sat with this, and the concerns I had about completing a mastectomy, I begin to tease out the fact they were two different surgeries. It is a major major downside that since I'm not taking my breasts at the same time that I cannot be on hormone replacement therapy.  But it takes my pot off the front burner and moves it to the back burner, in my mind, for a couple years. I have thought about this decision for a while now and feel comfortable both with considering how it fits into my life now, and my risk.
I met with two fantastic surgeons that came very highly recommended. Fortunately, I loved both of them! I prayed that the decision on which one to go with would be very clear, and all the parts and pieces would fall together. That is exactly what happened.  She had an opening in the time frame that I was looking for and all of my health records are in the same health system.  It fit together like a nice compact puzzle. I will be having a bilateral salpingo-oophorectomy on December 22nd, 2015 at the University of Colorado Hospital with Dr. Jamie Arudda. She is a oncologist gynecologic surgeon, specializes in BRCA patients. She is very experienced with people and my situation, and is specially trained to be able to do the least invasive surgery necessary.  I have been reading a book that has huge sections on synchronicities in life. I used to belong to a woman's group which commemorated multiple parts of the year with honoring seasons and ritualizing Solstice's.  I find it very funny that I will be entering the winter of my life the day after the winter solstice. Talk about the synchronicities in this lifetime. So as I prepare for this change in my life I am doing a lot of soul searching, and preparation for feeling different in my body and about my body. Thank you for being on this journey with me and caring to read my feelings on the subject. Part 2 will begin post surgery and I'm sure we'll have many interesting insight as to what menopause feels like at the ripe age of 35!