A Lot Can Happen in a Year

One_year_anniversaryI launched this blog about a year ago hoping to share our news in an efficient and hopefully interesting way.  Last July = 15 blogs posts.  This July = 1.  Life has been a little busy lately.

Samantha and I survived “Setting Sail” at CNU.  The parents learned a ton, mingled and sought out glimpses of their children.  The kids socialized, played games, ate in the dining halls and slept in the dorms.  Samantha stayed on three more days for summer leadership.  Surprisingly, she texted me daily and even called a few times.  It was definitely a period of adjustment as she looked for kindred spirits and joined in “bonding activities” that weren’t necessarily her cup of tea.  Luckily I was armed with all the right phrases to encourage and support her, and by the end of the week, she was very tired but happy to have found the right school and made new friends.  I think August will be a much easier transition for HER.  (I’ll be crying like a baby……)

Dave is scheduled to have his “mapping” procedure done next Tuesday, July 16th.  Assuming that all goes as planned his first dose of SirSpheres will be August 1st.  We had hoped he could do both sides of the liver at once and take advantage of the summer lull to recover.  Unfortunately the interventional radiologist says this isn’t a good option for Dave which is a change-up from when we met with him a few weeks ago.  So the second procedure is currently scheduled for August 27th, but we are trying to get it changed to a week earlier if possible.  Dave has travel plans over the Labor Day weekend and the school year is just starting to get going at that time.  That timing would be tough since Dave can expect “5-7 days of flu-like symptoms”.

We got a sad email today.  One of the people we attended the retreat (https://embracingtherollercoaster.wordpress.com/category/couples-retreat) with last October passed away yesterday.  J was the only female patient and had been struggling with poor scans and treatments that weren’t working.  She leaves behind a kind, loving husband and a smart, energetic preteen daughter.  My heart is feeling very heavy.

We are back in the swing of things here at home.   Lots of swimming, guests coming into town, lunch/dinner dates, oboe lessons, tennis camps.  And a consult with an orthopedic surgeon.  Did I mention that Sam has been told she needs surgery?  This upcoming year is shaping up to be a busy one too.  Stay tuned.

xoxo

Robyn

Remember the Time We Went to That Retreat?

I came across this blog entry.  It was written by a woman who was in charge of filming during the retreat.  The video she is making will be used in the future with patients, caregivers and staff at Johns Hopkins.  Laurie’s husband, died of colon cancer so it is more personal for her, I believe, than just a job making an educational video.

http://our-cancer.blogs.hopkinsmedicine.org/2012/10/10/6-care-givers-in-a-room

You can read my perspective of the retreat here.

https://embracingtherollercoaster.wordpress.com/category/couples-retreat

xoxo

Robyn

The Real World

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There used to be a show on MTV called The Real World.  The tag line was something like “When people stop being polite, and start getting real.”  One of the positive things that happened over the retreat, is that it allowed me to get a little bit real with Dave.  I have kept many of my thoughts and worries to myself because I haven’t wanted to burden him.  But it was good to be able to talk to him and share my perspective and some of what I am thinking and feeling too.  Another positive was that many of the “experts” shared how vital it is to healing to let go of the small stuff and free up your mind.  The session on meditation was actually very valuable for both of us but especially Dave since he has a hard time shutting down all the ideas and worries bouncing around in his head.  Overall, I am glad that we went.  The sessions that I dreaded the most turned out to be relatively anxiety free.  The ones that I didn’t dread at all were the sucker punches to the gut.  Just goes to show that there isn’t much point in worrying because you worry about the wrong stuff anyway.

I never want to do a retreat like that again.

xoxo

Robyn

Victorious

So not everything during the weekend was gut wrenching.  We definitely had some laughter through all the tears.  Saturday night after dinner there was a “Social Gathering”.  This was in the form of the Newlywed Game.  Dave and I represented and brought home a victory for Team Tremaine.  We actually got 12 out of 16 answers correct.  Not bad.

One of the questions was “What will your wife say is the first thing that attracted you to her.”  D. replied, “Her looks.”  His wife was unimpressed with this answer as it obviously wasn’t what she had written down.  So he changed it to “Her McDonald’s bag.”  K. who was the youngest member in our group and recently engaged, leaned over to D. and said, “What are you doing, man?  You should have stuck with her looks!”

Some of the answers we got right were:

What will your wife say is her least favorite piece of your clothing?  Barry Manilow t-shirt

What candy best describes your first encounter?  Hot Tamales

What is your wife’s favorite store?  LOFT

Who is the worst driver?  Dave

Who is stronger?  Dave said me.  And I knew he would say me.

xoxo

Robyn

Broken

I had a hard time getting to sleep on Friday night partly because the bed in our room was tiny, and partly because I was anticipating what we might see and hear over the weekend.  It was kind of like Christmas Eve.  Only not.

At breakfast, the first couple we met was W&A.  They both looked so shell-shocked that we weren’t sure who was the “patient” and who was the “partner”.  We chatted briefly but mostly gave each other space to eat in peace.  Some of the Saturday sessions were whole group and some of them were broken up into patient and partner.  The patient group headed off to their session “Pharmacy” while the partners participated in a session about “Caring for the Caregiver”.  This was an opportunity for us to share our experiences with others who truly understand.  Honestly, I thought I was doing pretty well compared to some of the others.  Some were crying the ugly cry (the one where your face is red and twisted in pain) while others seemed defensively tough as nails.  I inwardly congratulated myself on being so together.

The wheels came off during a later partner session entitled “Insight into a Partner’s Experience.”  This turned out to be a woman named Liz who shared her story with us – from her husband’s initial diagnosis through his death.  I utilized all of my “I’m not going to cry” strategies from biting the inside of my cheek to counting ceiling tiles.  None of them worked.  The truth is that I have not allowed myself to cry very much throughout this experience, but you would have to be made of stone to not crack in this situation.  The only male partner, who was sitting to my left, was sobbing.  I couldn’t look at him.  Liz was crying softly as she shared her story.  I couldn’t look at her either.  When she got to the part in which she described her son standing in the shower in his swim trunks holding his dad up so they could bathe him, I broke.  Her children were basically my children’s ages when he was diagnosed.  This hit devastatingly close to home.

xoxo

Robyn

 

The Couples

ImageI would like to share with you some of the many faces of colon cancer and the families that it effects.  From our small gathering, it was readily apparent that colon cancer does not discriminate along racial, socioeconomic, educational, or gender boundaries.  It certainly doesn’t skip over families that already have “enough on their plates.”

K&F – If you met this couple at a party, you would probably think that they have it all.  They are gorgeous, well spoken, and recently engaged.  Their biggest worry should be how many guests are coming to their wedding.  Instead, K. has been battling colon cancer for 2 1/2 years.

W&A – W. has been through the ringer with his colon cancer since being diagnosed last February.  A. spent most of Saturday in tears.  Partly due to the subject matter but also largely because she just had her first baby a month ago and her hormones are all over the place.  A. shared that they had fertility issues.

J&R – J. was the only female patient in our group.  She has been battling her cancer for 2 1/2 years.  At one point her 18 tumors, were beaten down to 2.  Now, the doctors won’t give her a tumor count.  Her cancer has also spread to her bones.  R. drove home each night to relieve the babysitter and stay with their 12 year old who has autism.

D&D – D. has been battling colon cancer for 8 1/2 years.  He had most of his plumbing removed since his cancer was so widespread.  He has beaten it three times and is now battling for the fourth time.  His wife, D., has recently discovered that she may have breast cancer.

D&E – D. ended up in the emergency room in March where they discovered that he not only had metastatic colon cancer, but he also had kidney cancer.  He had one kidney removed, part of his colon removed and part of his liver removed that night.  His wife battles crippling depression.  They are both on disability now.

With all of these amazing couples, there was not a word of self pity.  There was definitely a fighting optimistic spirit and an openness that was at many times heartbreaking.  On first sight, all of the “patients” look healthy.  You would never know what inner battles they are going through.

xoxo

Robyn

I Did it!

There is SO much to say about the retreat this weekend, but I am far too tired physically and emotionally to give it the proper reflection it deserves.  Sharing the details is important to me, so that will happen in the days to come.

For now, I share some of the basic facts.  There were 6 couples in attendance.  5 of the patients were male.  2 out of 6 were minorities.  4 were in their 40s or younger.  The sole woman was about 50.  All of the stories were so so hard.

The location of the retreat was isolated.  The rooms did not have televisions so at the end of the day there was not that mindless distraction.  The beds were tiny – Dave and I haven’t slept that close together since ever.  And to quote City Slickers, “Food’s brown, hot, and plenty of it.”  But none of that mattered.

For now, I leave you with this advice.  1) If you enter a room and there are chairs set up each with its own box of tissues, fasten your seatbelt because you are in for a hell of a ride.  2) Should you find yourself attending a couples retreat at any point in your life, do not for a minute consider wearing mascara unless you want to channel Tammy Faye Baker.

xoxo,

Robyn