Laundry ~ $2 a Load

September 20, 2020

It has taken me longer to write this post than anticipated.  I wanted to share my experience with the Gynecological Oncologist from Magee’s in Pittsburgh, PA on August 26^th; unfortunately, life got in the way and it has taken me until today to have the time/attitude to write about it. 

Lately, my thoughts and emotions have been all over the board.  Somedays, the inside of my head feels like a washing machine is rotating endlessly on a constant heavy load cycle. The spinning never seems to settle and if I had to put eight quarters in for every load, I would be broke. 

Let’s start with the actual appointment.

It takes close to two hours to get from our home to downtown Pittsburgh.  Thankfully, I have a wonderful driver that isn’t bothered by traffic, weather or the boredom that can sometimes come from being in control behind the wheel.   Jim and I left early in the morning and arrived in plenty of time.

 As I approached the entrance, a cool display caught my eye.  I have included a few pictures….

• I am in no way an artist, but I found these to be beautiful expressions of the journeys women go through when faced with the hard choice of breast reconstruction. 

Checking in at the hospital was easy, as was finding the office for the surgeon.  We were called back to the exam room on time and it didn’t take long for the surgeon to walk through the door.  I think it is worth mentioning here, that due to a weird make up of genetics in general, I have seen more than my fair share of doctors in the last 24 years.  I can say without hesitation, that the surgeon that walked through the door was one of, if not the BEST doctor I have ever had the (dis)pleasure of meeting.  He was not arrogant or intimidating in any way, shape of form.  On the contrary, he was pleasantly confident, politely direct and genuinely compassionate all at once.  He entered the room without a chart or computer on wheels and it was immediately obvious that he had already clearly read and comprehended my chart.  He did not ask any questions (sooooo annoying when the doctor asks the same 20 questions the nurse asked…which also happen to be on the pre-visit questionnaire).  Instead, he verbally confirmed my history and questionnaire answers, then said “I would like to do a quick exam and then, we can discuss options”.  He left the room so I could change and told us he would return in a few minutes to do the exam. 

• I am going to go off the rail here for one second….in case this blog ever finds its way to any doctor, nurse or health care facility out there.
  • I believe it is worth noting that when the nurse came in, she told me that I did not need to immediately change into the paper robe that sat awaiting me on the exam table.
    • The doctor would see me first, then step out so I could undress and slip into the literally paper-thin covering.
      • He would do a quick exam and step out again, so I could change into my regular clothes.
    • Then he would return so we could complete our conversation. 
• I can NOT stress enough how this approach helped me feel at ease and as comfortable as I could hope to feel under the circumstances.  It is completely miserable and uncomfortable to have any kind of stressful conversation when you are sitting practically naked on a table, trying to digest and understand important information of any kind. 
• I wish more physicians would take this approach.  After all, the comfort of the patient should be more important than filling in a schedule as tightly as possible to see the maximum number of patients in a short amount of time.  But hay, that’s simply my opinion. 

Back to appointment –

As promised, the exam was super quick and painless.  The surgeon left the room again and returned once I was dressed and ready to chat. 

After researching information on the BRCA1 mutation and knowing before I already arrived that, at the very least, I was probably looking at an Oophorectomy with a Salpingectomy.  The biggest question was… should I have a hysterectomy as well?  All those fancy words add up to this….should I remove the ovaries and tubes only or take the uterus with it?  As with most things, there is debate and theories aplenty.  Research is now showing that approximately 50% of Ovarian Cancers start in the Fallopian Tubes.  The fact that there is no good screening for Ovarian Cancer, supports the recommendation to take the ovaries AND tubes, however, if the uterus stays in place, there is always going to be pieces of the tubes left behind (since the tubes are also attached to the uterus,  it is impossible to remove 100% of the tube’s tissue .)  In my mind, it doesn’t make sense to leave any of the tissue from the tubes inside my body and therefore, after discussing the pros and cons of taking the uterus, I decided that removing it ALL was the best option.  I had already been leaning this way, but after receiving what I believe to be a raw and honest answer from the doctor after I asked my final question, I believe wholeheartedly that I am doing what is best for me.  The question I asked was the ever popular (and often unanswered) “IF your wife/mother/daughter was sitting here, what would you do?”)  He looked me straight in the face and said, “I do a lot of these surgeries….I have seen a lot and am probably biased, but this mutation scares me….”  I am not 100 % certain how he finished this sentence but, I heard all I needed to hear to finalize my decision.

My total Hysterectomy is scheduled for Tuesday, November 3^rd (Election Day).  Although I really do believe this is the right choice, I can’t lie and say I am not a bundle of nerves over it.  I am sure it is only natural, but here are some of the things that keep spinning around in my head.

• Topping the list of worries is that once they get in there, they will find cancer or early cancer cells.  After all, the threat of this terrifying disease is driving all decisions and I fear that unbeknownst to me, the mutation has started its unseen magic trick of mutated division.  There are no definitive screenings to confirm Ovarian Cancer and it can be pretty far down the road of development before a woman notices symptoms, so I don’t think I will fully rest comfortably until I know the ovaries are removed and I am cancer free.
• Even though menopause is a natural transformation for women and would be occurring for me within the next 10 years, I stress about being thrown into the abyss of negative side effects.
  • Hot flashes – I have experienced some of these on my own already and very much dislike the feeling of cooking from the inside out.
  • Insomnia – I have battled this annoying malady already for years, but have found a couple of fairly successful solutions.  I fear that after surgery, these fixes will not work as well as they do now, and I will once again face the distinct misery lack of sleep brings to my days.
  • Family – I have experienced the unflattering mood swings of women who have travelled this path before me.  I know what it feels like to be on the receiving end of an out of control moment and I worry about exposing my loved ones to my emotional outbursts and not-so-pleasant moments.
    • After writing this, I realize that my friends and family have dealt with my emotions for years, maybe I should release the worry over this one.  I still love the ones who have lashed out at me over the years and am fairly confident that my own will do the same.  – See…..writing really can help the writer.  😊
  • Future surgeries – I know going into this that it is not going to be my only surgery.  I still have not met with the breast oncologist or a plastic surgeon yet, so I do not know for sure if a mastectomy is in my future, but feel quite certain that it is.  One surgery is a lot for anyone, multiple surgeries in a condensed time frame is severely daunting.
    • Will enough time pass between one surgery to the other?
    • Will my body be okay and strong enough to handle multiple surgeries?
    • How is being thrown into menopause going to affect recovery from a mastectomy.  It is A LOT of change in a short time and change is not my favorite thing in the world.
  • Intimacy – This one is big and causes a lot of anxiety.  It is kind of twofold.  With the removal of both ovaries, hormonal imbalances can create all kinds of unsexy side effects.  Tack on the possible removal of both breasts and reconstruction and you get a grown ass woman who has been married for 27+ years freaking out about what the future of physical affection is going to look like.
    • I know, I know…..I have a great guy, we have a fabulous marriage, everything will work out. I KNOW!!!!!!  Yet, I am fearful.  Nothing but time and the experiences ahead will tell how this all plays out.
  • Pandemic – Of all the friggin’ times in history to face these heavy stressors, I am kind of pissed that COVID makes every decision harder by placing one more critical factor to consider.
    • What if I am exposed and get it before surgery in 6.5 weeks.
    • Will Jim be able to go into the hospital with me the morning of surgery and be able to be in recovery when I come to?
    • Will I be able to have any visitors at home after surgery?
    • What if I get it from the hospital or after I return home and am recovering?
    • The “what ifs” are endless and every day I seem to dream up more. 
  • Recovery – If you know me at all, you know that I am not good at sitting still and the possibility of several recoveries being necessary over the next 18 months puts me a bit on edge.
    • Between research and reading the stories of women who have gone through all this before me I realize:
      • Many challenges can occur throughout the recovering process.
      • No matter what, I will have quite a bit of down time as I heal.
      • Most women conquer the recovery and are true warriors.
      • Some women have unforeseen complications that make their recovery take longer than anticipated.
      • No one can tell me with 100% certainty that everything is going to be fine. 
      • This lover of summer is already annoyed that next summer has the potential to be a summer of “healing” for me. 
        • The possibility of not being able to submerge myself in the river next year fills me with dread.  But I keep telling myself one summer of healing is better than no more summers at all.
          • It makes sense in my head, but the heaviness in my heart reminds me that the next year is going to be quite interesting and intense. 

Through my ever-spinning thoughts, I recognize the fact that I am standing at the foot of what (at times) seems to be an insurmountable mountain.   As I continue preparing to take the beginning steps toward “previvorship,” I am fully aware that it is going to take a toll on me physically, emotionally and spiritually.    However, by the time November 3^rd arrives, I plan on being ready, no matter what the path to the top looks like.  But, for now, I am going to focus on trying to get the sometimes-uncontrollable spinning in my brain down to a gentle twirl.

Soooo….until we meet again, be kind to yourself and others.  And ladies……please educate yourselves and find out if any kind of Breast or Ovarian Cancers run in your family.  Knowing your history and your genetics can help you make informed decisions regarding your personal health.

Peace,

G

PS….

I am going to try to attach a song to each post.  Music is both a healer and a motivator for me.  I cannot imagine tackling the months ahead without it.  This particular song helps to remind me to “breathe”, I hope when your own personal journey gets rough, it helps remind you too.  https://www.youtube.com/watch?v=FAlWxZK-ps4