Monday, November 29, 2010

Today's Appointment

Today I met with my Gynecologist, the one who found and removed the lesion three weeks ago.  I wanted to meet with him as an unbiased advisor now that we have the full results of this cancer.   Although he acknowledged that he isn't as close to this field as he used to be he gave me some very good questions to ask the radiology and medical oncologists.  My questions will stem from his opinions below.
  • He believes they shouldn't begin radiation or chemo until my surgery has healed and that will take 3 more weeks in his mind.  (My oncologist had said we should start the first week of December)
  • He said if this were his wife he would certainly get an second opinion because this type of cancer is so rare, and he believes I should start with seeing another gynecology oncologist.  (He said he'd go to MD Anderson because they've been doing gynecology oncology the longest [along with NY], but that he would trust my oncologist to know the most recent information.  My oncologist said to go to UAMS in Little Rock or OU Cancer Treatment Center in Oklahoma City.)
  • He believes I should not take birth control as glandular cancer is a hormonal cancer.  (My oncologist said better to stay on than risk pregnancy)
  • He thinks chemo with radiation is the best treatment for success because chemo will get any wayward cancer cells that might not have been actively multiplying DNA at the time of the PET scan.  He also said that success rates increased 25-30% with patients when they began doing chemo and radiation together.  (This was my oncologist recommendation.)
  • He also said that after everyone's opinion it often comes down to our intuition on what we believe sounds the best for us and our situation. 
So again, not a lot of certain answers but many more questions.  I still felt good about going and getting his opinion.

Finding Thanksgiving

I share this post for others that may be dealing with something difficult. 

I love Thanksgiving and I really love Christmas, but I'm having a hard time getting in the mood.  I feel as if I'm going through the motions and putting one step in front of the other, but feeling nothing.  I was numb before my last doctor's appointment, which I do believe was God's mercy so that I wasn't full of anxiety as I waited, but this is different.  My heart is usually one that is full to the brim with emotion.  I'm either completely thankful and happy, or sad, or disappointed, or wishful, or dreaming of what's to come.  Very rarely do I not feel the moment in a personal and meaningful way.  Right now I'm sad because Billy, our kids, and I had a wonderful Thanksgiving week-end with family, but my heart felt unengaged in a way that hasn't happened before.  Since my last doctor's appointment so many people have told me how blessed I should feel and in my mind I know this is true.  Deep down though, I don't feel it.  I feel somewhat angry, sad, tired and confused about my next step in this journey. 

When the doctor gave us news that this cancer had not spread it was such an instant relief.  I realized I'd been harboring fearful and unspoken thoughts. 
  • Riding home with my family from church we were talking and laughing with my silly kids and in my mind I felt afraid of what my family would look like without me.  I pictured it and knew my dear husband would do well.  He would rise to the occasion with strength and my children would be okay.
  • I tried to tell myself that I wouldn't feel the pain of Billy remarrying if I didn't make it.
  • I knew my sisters would help Alyssa through puberty and boyfriends and her wedding.  They would help her find balance between being strong  and being gentle.
  • I knew that Isaiah's gentle personality would be protected by many, but he would be encouraged to find confidence and leadership so that he would one day grow into a man after God's own heart.
  • I knew that Billy, our family and friends would help my little children remember me.  What I liked and didn't like, my personality, my quirks.
We left the oncology office and these fears rose unexpectedly and I felt overwhelmed with emotion.  The numbness I'd felt for days before had protected me from my thoughts. 

The hard part is that as soon as the doctor said the cancer hadn't spread he moved into treatment of radiation and chemotherapy and the hardships of that.  He spoke of some lifelong effects of radiation.  He said the success rate of this cancer is not 100%, but that it is high.  Although I was so incredibly glad to hear this news, I still walked away with a shadow over me because of what is still to come.  I've been feeling like this is wrong for me to feel this way as so many others are rejoicing and I'm not yet.

Over the last several days I've felt burdened as we decide where to go for a second opinion, where the treatment will actually be done and if that will be close to home.  I meet with my gynecologist today to ask his unbiased opinion on where to have the radiation and chemo done -  locally or with special equipment called ProCure Proton Therapy in Oklahoma City?  I am hoping to get in for an appointment in Oklahoma City this week to meet with another oncologist and radiologist for their opinion as well.  As mentioned before I have two upcoming appointments with a local radiologist and medical oncologist.

I'm praying for patience as I'm tired of appointment and decisions.  Today I claim these verses.

"I will guide you along the best pathway for your life, I will advise you and watch over you." Psalms 32:8

"I prayed to the Lord and He answered me.  He freed me from all my fears."  Psalms 34:4

Thank you to those of you that walk this journey with me.  I am so grateful for your strength, your tears, your help and your listening ear as I deal with the emotions of this journey.  Please know I never mean to take you for granted.

Wednesday, November 24, 2010

This is the Day

Today I woke up knowing we would get some real clarification from the oncologist.  He would have seen my PET Scan and CAT Scan, reviewed with the other Gynecology Oncologists in his Fellowship and have a treatment plan.  As I stood in my closet looking for something purple to wear (more on the reason for the color later) a verse clearly came to mind. 

"This is the day the Lord hath made; let us rejoice and be glad in it."  Psalms 118:24

I repeated this verse over and over in my mind thinking it was a strange verse for God to give to me for this particular day, but soon my nerves did calm and my heart could smile.  It was time to rock n' roll and go see what we were supposed to be so darn joyful about.

About 5% of vaginal cancers are adenocarcinomas and I am one of these few.  Approximately 40 women will be diagnosed with vaginal adenocarcinoma this year.  (The 3 I mentioned before was an old statistic.) The good news is that I want to be one of these few because it means that this is a primary cancer, not a cancer spreading into this area from somewhere else.  The other good news is that it hasn't spread into other parts of the body, especially the lymph nodes.  The doctor said the lymph nodes are like the river flowing through the body and the lymphatic tissue is like the river bank.  My cancer only spread to the river bank and this is much easier to treat. 

I had surgery 14 days ago removing a large portion of this cancer.  However, based on the scans there is still cancer in the body and it is on my right side and draping over and behind the vagina.  Because there is not enough room in this area to get negative margins (healthy tissue) around the cancer removed they cannot treat this cancer with additional surgery.  The doctor says I will have radiation 5 days per week for 6 weeks and chemotherapy 1 day per week for the same 6 weeks.

Next steps are too get a 2nd opinion, most likely at the OU Cancer Institute, but we are still researching this. I will be with a radiology oncologist on 12/2 (radiation treatment) and a medical oncologist on 12/9 (chemo treatment).  I will have another CAT scan done to determine particulars of treatment at some point as well.

I am rejoicing that we have the best possible news given the situation and we have a plan to move forward.

Monday, November 22, 2010

Beginning the Journey

Growing up in Northwestern Colorado I was blessed to live with beauty all around me.  Beauty in the streams where my mom taught me to dip my toes on a hot summer day.  Beauty in the mountains that surrounded our little hidden treasure of a town.  Beauty in the Aspen trees that would turn so golden in the Fall and allow me to etch my name in their trunk for future generations to see.  Beauty in the river where I could float on an inner tube to the 10th street bridge.  Beauty in the soft cool grass behind our house, where deer would bed down for an late afternoon rest. In my mind I can picture a familiar place, an open field nestled in the mountains; wild flowers scattered here and there and a bright blue sky with fluffy white clouds gently floating above me.  In this place I can find

I am beginning a journey, one which I never would have asked for, but yet have been given.  One week ago today I sat in a Doctor's office for a one week follow-up appointment after the removal of a vaginal lesion.  This lesion was not of huge concern as my body has produced many odd things over the last 12 years.  I've had a dermoid tumor the size of a grapefruit, adhesions, cysts, endometriosis. I've had a paper thin uterus at one point and now a uterus that tilts backward.  All of these things have been "fixable" or without complication so that I could be blessed with two beautiful children and all that life could offer me.  However, this time the doctor came in without words of encouragement; instead words of despair.  This particular lesion came back from pathology showing active glandular cancer cells in the vaginal tissue and lymphatic tissue.  I was gently told that I have a very rare type of vaginal cancer and that the road ahead could be long and hard.  I was told this is "life changing" cancer.

With a pit in my stomach I faced my sweet husband with the news and together we told our family and friends. How hard it is to see the sadness and grief on so many faces, but what an outpouring of love we've seen already.

As surreal as it was, five days ago I sat in an Oncology office hearing that I could be one in three Americans  diagnosed with this type of cancer in a given year. This is true if the removed lesion was the primary location of the cancer, but more tests must be done to prove that the cancer is not coming from anywhere else in my body.  To prove this I've had a PET scan, where they injected me with radioactive sugar water (simple terms) to do the most thorough check from head to knee.  I've had a CAT scan where I was injected with an intravenous contrast material that made my body temperature rise to the point my mouth was too dry to swallow and my contacts were drying on my eyes.  As quickly as the heat came it went away.  As I lay in this machine, my body being scanned for 45 minutes, I can picture myself running barefoot in the green field of grass and flowers feeling peaceful, at rest, carefree. I'm thankful for this image and our big God who created it.

At 9:00 a.m. tomorrow I go to see the oncologist and get the results of the PET Scan and CAT Scan. This is the start of my journey and all those that walk through this journey with me.  My purpose of sharing this story is not only to keep those who know me updated and to document the blessings seen during this time, but also to help others that may be dealing with something hard.

Proverbs 3:24 "You can go to bed without fear; you will lie down and sleep soundly."