Saturday, March 25, 2017

Processing Vulval Intraepithelial Neoplasia 3 (VIN 3)


Having a precancerous condition (VIN 3)on my vulva is a strange phenomena. It's a rare so most people aren't aware of it, I certainly wasn't. And let's face it, people rarely talk about women's anatomy such as clitoris, vulva, labia, etc. We focus on breasts and vaginas, usually with odd nicknames rather than actual labels. My personal preference for vagina is "hoo-hah." It's cute with a punch of power and why can't my vagina be cute and powerful? It may not be cute after surgery but I can still pretend.

A handful of family and friends, and YOU, know about my condition. I've been wondering, do I talk about it? Do I wait until I schedule my surgery (the scheduler wasn't in yesterday due to the blizzard on her side of town), after the surgery and my results are in? Or do I keep it to myself and those who already know?  At first I thought if this was breast cancer that would be an easy answer but I don't think that is true either. I imagine that with any illness or disease one faces those same questions. You don't want to burden anyone, you don't want to worry anyone, but you do want support. You also don't want to keep it hidden in case it's worse than they initially thought.

I'm not sure how I feel or what to do. I'm in this odd place of near-disbelief. Part of me is relieved. This is related to the HPV virus. This means that it's not hereditary (except the piece that says, I likely have an underlying autoimmune issue that allowed the HPV to develop) which is great!  It's not like something within me was unleashed and I got cancer. It's that I caught a virus and got the beginnings of cancer. It also means my girls don't need to worry about it (thank goodness for the HPV vaccine!).

Yet, I am afraid that there might be real cancer. The affected area is larger than they first thought. The surgeon said he didn't think there would be actual cancer in the rest of the area but they will send it to the lab to be sure. If there is then we'll go back in to remove more tissue and my lymph nodes and see if there needs to be radiation or chemo. On one hand I want to believe him. On the other hand, I previously heard "I'm sure it's nothing but we'll go ahead and biopsy it."

When Valerie was a baby with some monumentally stubborn jaundice, he doctor said, "I'm sure tomorrow's test will be better" and "It never gets this high" until she was readmitted. Before the next to last blood test she said "I'm not telling you, it won't be worse. Let's just wait and see." Thankfully, at the scare point her levels started coming down. I worry more when told not to worry. I guess, I have some trust issues.

Through this rambling, I've decided to talk about it. All the readings say it's becoming more prevalent so people need to be aware. Sex should NOT be painful--if it is, go to the doctor. For quite some time,  I've had an area in which would often become irritated during sex. I didn't think anything of it. It wasn't the kind of pain that made me cry or stop having sex, but it did make things uncomfortable. That wasn't normal. Apparently, itching is a symptom as well. Thankfully, I didn't have the kind of itching I've read about but there was some a few months ago. I had a sore spot that went from being sore during/after sex to being sore all the time. I finally took a look (used my cell to take a picture and prayed that I didn't accidentally upload it to Facebook!) and discovered a purplish brown spot on my labia near my sore area, that is what they biopsied. The OB/GYN thought it was simply a varicose vein (gross!) on my labia but biopsied it anyway. I was prepared to ask and push if she wasn't going to suggest it. Don't worry about looking like a nut job, you have to advocate and take care of yourself.

I'm scared of being a hypochondriac so I often second guess myself.  I definitely need to stop doing that. Several years ago I was having heart palpitations and assumed it was related to anxiety because it was during midterms. Luckily, I went to the doctor for a sinus infection and they didn't let me leave until I had a Holter monitor. I then went through lots of testing and they put me on meds to help. I now avoid an abundance of caffeine and my heart is healthy. My doctor told me that if it had been an anxiety attack I would have thought I was dying. Because I wasn't freaking out was a good indication, it wasn't anxiety.

Anyway...here's a diagram of what they'll be removing

I appreciate having this place to write and process. I question myself why I choose to do it online in a public forum. I think it's because maybe there will be someone else who stumbles to my blog and wants to talk, wants to process with me. Thanks for "listening."

Monday, March 13, 2017

Pre-C

It started with a sore, a lesion, in the most unpleasant of places. I finally called the ob/gyn for an appointment.

At the appointment, she told me it wasn't anything to worry about. She was sure it was a varicose vein. Gross!  Who knew you could get varicose veins in your vaginal area? Certainly not I!  All the same I was relieved. She took the biopsy just in case. I left my appointment gently chastising myself for being a hypochondriac and going to the worst case scenario of the big C.

About two weeks ago she called with my results. I had just gotten out of court and was checking messages. I got a little nervous when she wanted me to call her but then I realized that if it was major they'd have me come in. So I sat in my car and called.

"They found precancerous cells, we're going to refer you to Dr. X. He'll cut until there are clean margins. His office will call you in a few days."
"Oh, okay."
"Do you have any questions?"
"Not right now."

In my brain the "pre" dropped off. All I heard was cancer. I had been relieved to be wrong the week earlier. And now it was precancerous.

I've had a bit more time to process so I'm feeling pretty good. I've gotten to the place where I don't think about it every day. It helped when my pap smear came back clear.  It also helped to learn the actual name of my condition, vulvar intraepithelial neoplasia or VIN III. I've laughed quite a bit about finding one of the most obscure conditions to get--leave it to me!  See, I am special!

I see the gynecologic oncologist next week. I am nervous about it. I'm scared it will be multi-focal (more than one spot). I'm scared of the pain. I'm scared they will find the big C in other places. But I'm also hopeful. I'm hopeful it will just be one small spot. I'm hopeful that all will be well. I'm hopeful that he'll take more time to explain the process and what's going on. I'm hopeful my ears will be listening and my brain will connect the sound waves. Thankfully, Joel is going with me as well, so I will have a second set of ears and a second brain to help make sense of it all.

Wednesday, March 8, 2017

The strangest dream

"Last night I had the strangest dream..." is something my husband hears a lot. "Can I share it with  you?" is next. Depending on his mood and where he is in his stage of getting ready he may say yes or no.

Since I'd really prefer to process this strangest dream then the question is really for you. If your answer is yes then by all means keep reading! If no, then move along but I hope you will come back another day!


The dream was much like an alternate universe. In this dream my eldest daughter was 3 or 4. Her biological donor (sorry, father won't come out) came back into her life. (I was actually thrilled, him being healthy and actually being a father has been something I wanted for her for a very long time--she's now 21 and I don't see it happening. Alas, I digress.) She was spending the weekend with her Auntie (his sister) and I was having a strange church thing. We had discovered that Subway created a machine that would hold a person, magically adjusting to each new person, give them delightful nourishment, and then kill them so that their organs could be harvested and shared. It was a beautiful sacrifice for those who were facing extreme illnesses.

We borrowed 3 of these machines and offered it to the congregation.  Suddenly everyone wanted to die and give their sacrifice in the name of God and love. I think 2 or 3 people had gone through this and it was my turn to sit in the machine and then sacrifice myself. But while I sat there, I realized that this was not quite what I thought. I realized that God wanted us to live...to really live!  That that was our sacrifice to be made. After feeling torn for my congregation and what they would think, I got out and tried to explain myself and explain how God wants us to live when my sister-in-law burst in with my child. She was appalled and going to call child welfare on me and have my daughter taken away. She ran out the door. Her husband stayed and taunted me and my congregation. During the chaos, 2 or 3 more people ran into the Subway machines and killed themselves. I was a nervous wreck. I had somehow been duped into confusing death for hope and life and led my congregation down this awful trap. I had to fix it!  I also had to keep my child safe. I began to worry about the families of the people who had died in the machines, and how would I do so many funerals and when? Wouldn't it be disrespectful to do one big funeral? Would I get sued? Omg!  I was going to be blamed for all of this! And then a foster child of my sister in law, jumped into one of the machines and died!  My life was ruined!  I was a failure!

At this point the right wing group that was sharing our church building came in and started singing and singing that I was from the devil and leading people to hell. I tried to explain what had happened and how wrong I was. I started smashing the machines, taking apart the awful decor of the church which had turned red and black. As I smashed the stuff to bits they turned white but there was something off still. In the destruction, I noticed there was no love and without love, it was not a part of God. I realized that I was not completely forsaken but God had not given up on me!  God was still within me but needed me to wake up and fully understand love (in the dream not in real life) and that this right wing pastor was really the devil. So I began to cast him out with prayers of love, arms raised and hands open to him. As the actual devil was getting cast out the room brightened with the love of God and turned sparkling white and then whenever doubt came back in or someone else screamed at me, then it would darken and turn to red and black again. The singing, dancing, destruction, and redemption went on for some time like a bad high school musical with the intensity of a evangelistic mega church altar call.

I think I was so exhausted in the dream that I woke myself up.

I woke up to the realization and beautiful feeling that I was not lost, I would never be lost to God, and that no one, no matter what they've done is lost to the redemptive power of God's love.

I was also grateful, this was just a damned weird dream!

Wednesday, March 1, 2017

Hope, Beauty, and Kindness

This morning as I was scrolling through Facebook,  my friend Terri posted beautiful pictures of her with some folks from her congregation ceremoniously burning ashes for Lent. I asked her to share her liturgy and she did. As I read through the beautiful and poignant liturgy my heart swelled with excitement and joy. I realized that it is completely within the realm of possibility that next Lenten season I could be ceremoniously burning ashes with my congregation using her liturgy!

My first Lent as a full-time pastor in the UMC, I knew I wanted to burn my own ashes. I took the palms from the year before (thankfully the previous pastor had kept a stash), took them outside of the church with a bucket of water (safety first!) and big metal bowl to burn them in. I sat down crossed legged with the bowl in front of me, said a prayer, put the palms in the bowl and lit them on fire. They smoked....they smoked a lot. I started coughing and fanning the smoke away as I worked to stand up. Once I had stood up, the Sheriff pulled into the parking lot. Thankfully, he was one of my congregants and was curious about what I was doing. I explained to him and we joked about it being quite a site to see. The smell didn't help matters either.

He shared a story with me about a previous pastor who had burned their own ashes but whatever liquid they  mix it with ended up stinging and burning those who received the ashes. I made sure to research how to properly mix the ashes. I wish I would have researched how to properly burn the ashes! Each Lent I remember this little tale and it makes me smile, it brings a dose of joy to my heart.

This Lenten season there is a lot wrong with the world (imho); perhaps no more than previous years but it is especially difficult for me at this time. My only response, my only good thought is that in order not to be brought down by despair I must actively seeks out hope and beauty. I must intentionally act in kindness towards others and myself.  It does my rebellious soul good.

I hope to post pictures of the beauty I find. My intention is that I will do this often, they may be pictures with or without words.

This is the beauty I was struck by yesterday on my way to work. I had to stop and pull over so I could get a picture. It doesn't do justice to what my actual eyes witnessed but it comes close enough. I am truly lucky to live in the midst of such grand beauty.


 May your day be lifted up by hope, surrounded in beauty, and your actions be rooted in kindness.