Cancer: The Sequel

This blog is a summary of events from the last few months.  I did not initially blog because I was struggling to deal with some difficult news and really didn’t want to share my thoughts immediately.  I actually missed blogging, and in hindsight probably should have done so.  I forgot how therapeutic it can be.

So, all is well on the lymphoma front.  I had my check-in with my oncologist over the summer and as part of my check-in he sent me for a CT scan which is routine post-cancer care.  When he reviewed the results of the scan he mentioned that my uterus and one of my ovaries looked enlarged and that I should probably check-in with my gynecologist.  But that I was all clear with regards to lymphoma!

I was already overdue to see the gynecologist anyways because the person I was seeing left the practice, and I was having horrific menstrual cycles so I actually followed his advice and got an appointment set up with a new gynecologist. 

The visit with the new gynecologist was like unleashing the Kraken.  We spent a month getting to the bottom of various issues.  First issue resolved:  hypothyroidism.  The radiation for the lymphoma probably damaged my thyroid.  That was the easy fix though – a pill.  I had the beloved Pap smear and that came back normal (at least something did!).  Next we did a pelvic ultrasound which showed a cyst on my ovary and a thick endometrial lining.  She gave me medication to hopefully help, but also wanted to do an endometrial biopsy.  Because I’ve always had wacky periods, I was not really thinking cancer.  I figured it was hormone irregularities which were potentially made worse by the chemotherapy I had for the lymphoma.

Imagine my surprise a week later when she called to tell me that the biopsy showed uterine/ endometrial cancer.  I was devastated.  It is very unfair to have fought and beat one type of cancer only to get a completely different type of cancer.  The last time I heard “you have cancer” I felt a lot of fear because I didn’t understand what it meant and how to deal with it.  This time I felt a lot more anger about the situation. 

She set me up the next day with an oncologist in Charlotte that specializes in gynecological cancers.  He was very reassuring and scheduled me for a hysterectomy.  He felt that surgically we could remove all of the cancer.  I was relieved to have such a positive prognosis.  Both times that I’ve had cancer, I was told “if you are going to get cancer, this is the one to get.”  Yeah, that always helps to hear.

I went into the hospital on October 22^nd for the hysterectomy.   They were going to attempt to do it laproscopically which is less invasive.  But the surgeon told me going in that it may not work out that way and they may do a full incision which ended up being the case.  The surgery lasted about 3-4 hours.  The first two days of recovery were pretty rough.  Every time I would move around I could barely breathe, my pulse would race, and my blood oxygen level would plummet.  They finally did a CT scan and identified that I had a pulmonary embolism (clot that had moved to my lungs).  They started me on medication to resolve the clot.

I was able to go home after four nights in the hospital.  After two weeks they removed 50+ staples from the incision sites.  Because they started laproscopically, I have a total of four different incisions in my stomach.  Three weeks after the surgery, I went to see the surgeon for post-operative follow up and to discuss pathology results.  The good news is that the doctor believes that all of the cancer was removed.  The margins in a few areas were not ideal though, and because of that he recommended that I follow-up with radiation therapy to ensure that there is not spread or recurrence.  He also wanted me to have a PET Scan to verify that no other cancer showed up in the scan.

And that brings me to this week.  On Monday, I went for my PET Scan and today I met with the radiation oncologist.  The best news yet – the PET Scan looked good.  No cancer is showing up – nothing in the lymphnodes.  But even with such good news, they are still recommending five weeks of radiation.   I will admit this news is a bit devastating.  Radiation is a huge commitment.  It is every single day, five days a week.  Something about getting cancer treatment everyday messes with your head.  You can’t get away from the thought of cancer.  And the fact that you are being treated with something so fierce that no one will be in the same room with you while you receive treatment is a little unsettling.

I am a “look on the brightside” kind of girl.  I am telling myself  all of the positive things and there are a lot of positives.  No chemotherapy.   We are not trying to get rid of significant cancer – we’re trying to prevent cancer and ensure I live a long and happy life.  Radiation is less than 30 minutes a day.   But even with all the positives, a good attitude isn’t coming easy for me today.

I have said this before, but can’t say it enough – cancer creeps into your life in ways that aren’t just physical.  It negatively impacts everything and everyone in your life.  Robbie has had to take on the bulk of things at home because of my recovery from surgery.  My workplace has had to cover my workload for a second time.  I felt guilty the first time, and this time I feel downright awful about it.  I know that none of this is my fault, but that doesn’t help. 

I am tired of being at home.  I am tired of feeling tired and of thinking about all of this.  I am tired of hearing everyone say “You’ll get through this!  You can do this!”  I am just so tired of it all.  And I know this is not a fighting “kick cancer’s ass” attitude; but it just happens to be how I’m feeling on this particular day.  I will beat this and I will be awesome, but I will be awesome tomorrow.

 Stay tuned as I bring you five weeks of disturbing stories from the radiation room…

Bananarama

Once you’ve been treated for Non-Hodgkins Lymphoma you are subsequently monitored for recurrence over the next five years.  The monitoring includes check-ins with the oncologist, as well as bloodwork and scans.  It’s been well over a year since my last scan of any kind – in fact I think the last one may have been late summer of 2012.

So a few weeks ago, I received in the mail appointments for bloodwork, a CT Scan, and a visit with the oncologist.  I went and had the bloodwork done on Monday and this morning I went for the Scan.  My previous scans have all been combo PET/CT scans.  They use a nuclear contrast and it’s a bit of a different process from just a CT (often referred to as “Cat” Scan).  Today I had to go for a C/P/A CT Scan.  When I got the appointment, I didn’t understand all the acronyms, but I have since learned that I was going for a pretty comprehensive CT Scan that included my chest/neck, pelvis, and abdomen. 

My appointment was for 8 AM and I thought I’d be out of there by 9 AM at the latest.  I was so very wrong.  First, I had to argue over insurance.  I have a pretty common brand of insurance, but my policy is out of California, not North Carolina (NC).  Because I live in NC though, it seems all the systems are set up for the local insurance so there is frequently back-and-forth about what is and isn’t covered.  The woman I had to meet with to check-in for my diagnostic was quite insistent that my procedures were only 80% covered and that the costs were also subject to the deductible.  I had actually called my insurance company yesterday to verify and I am certain it is covered 100% and that the deductible is waived.  But after much back-and-forth and no wavering on her part, I reluctantly paid the estimate so I could go ahead and get the scans.  I was already dreading the appointment and knew that if I put my foot down and rescheduled, I would drag my feet and not do what I know is important.

She then informed me that someone would be bringing me a smoothie that I needed to drink.  The smoothie helps make my insides show up better on the scan.  A barium banana smoothie.  Yum.  I headed back to the waiting room, and as promised out came a technician with a cold smoothie and a cup.  She poured half in the cup and told me to drink it.  And told me to drink the other half twenty minutes later.  I took one sip and began to gag.  I was already cranky and frustrated which put me in no mood to conquer the barium banana smoothie.  I closed my eyes and took a couple of deep breaths.  I whispered to myself “I can do this.”  Nothing like trying to find your Zen in a waiting room at a medical facility.  I began to drink one swallow at a time.  I could not chug, but if I did one swallow at a time I could suppress the gag reflex.  I finally got through the first cup and by the second round was able to do it without gagging at all. 

By this time I had been there almost two hours, hadn’t had a bit of coffee, and needed to pee desperately.  Except I didn’t know if I was allowed to pee – being full of barium banana smoothie and all.  Finally someone retrieved me from the lobby and as we were walking back asked if I needed to use the restroom.  I was SO HAPPY to pee.  It’s the little things.

I wore my scan outfit (gym pants and T-shirt) so I didn’t have to put on a gown.  If you ever have a medical crisis, buy a good scan outfit!  Once in the scan room, I found out that not only did I have to drink the horrid banana barium smoothie, but that they would also be injecting some contrast for the non-abdominal parts.  Because it was actually multiple scans, I had two contrast injections and multiple passes of the scanner.  Finally, around 11 AM (THREE HOURS!) I was released to go home. 

I would like to say that after all I’ve been through that this process would not instill fear.  I have fought cancer and won.  I’ve had some minor scares (i.e., the tonsils!), but for the most part it’s been smooth sailing.  But the check-ins always makes me feel unsettled.  There are days, maybe even weeks when I don’t even think about cancer anymore.  And even then, it’s just a quick thought – not an all-consuming obsession. 

But today it was like running into someone you’ve been avoiding.  You try not to make eye contact and you try to pretend it’s no big deal and may even mutter something polite, but your heart is racing and you want to run away as fast as you can except you can’t because that isn’t the grown up thing to do.

For now I’ll try very hard to not think about it.  I’ll enjoy the weekend and spend time with the hubbie and the beagles.  And I’ll picture my oncologist saying those words I love to hear “Scans look fine.”  And I will avoid all things banana.    

 

Simple Gifts

As another year comes to a close, it is human nature to take a moment and reflect.  Since the cancer diagnosis and treatment, each year that goes by is viewed as a gift.  Each day and all the moments are the extra, the icing on the cake – the things that may not have been if the cancer had won. 

With each passing day and month and year, I find it harder and harder to live each day with a feeling of gratitude.  I was so overcome with that feeling when Kelly 2.0 emerged from beating cancer.  But now, the worries of daily life sometimes cloud my ability to see past those things that aren’t important.

But stopping to reflect helps me re-center and to focus on the right things.  The things that matter.  The things that make humanity awe-inspiring.

Moments worth remembering were plentiful this year.  Many days were spent in the sunshine enjoying laugher with friends.  It was a year in which we made new friends.  I gazed upon the Golden Gate Bridge in wonderment.  I loved watching the joy that making a great batch of wine brought my husband.  There were many beautiful sunrises and sunsets.  I stood at the top of NC watching the clouds roll in and feeling totally alive.  There was much creating – whether with words or ideas or with my hands.    

And yes, there was sadness at times.  Losses.  Struggles.  Unspeakable and unexplainable things that happened.  But all the darkness only emphasizes the need to focus on the light.

I will make it my goal this year and every year that I am given to live a life of gratitude and of joy.  To not just enjoy great moments, but to find ways to create them for myself and others.  And I ask you to do the same.  Together we can make the world a better place – one moment at a time.

Haunted by Somebody I Used to Know

Thanksgiving is right around the corner.  For the most part, I could not be more excited.  I love the holiday season, and I can’t wait for the weeks of festivities.

I find myself preoccupied by events that took place in the fall of 2010.  I can’t help but to try to mentally walk through the many firsts that happened – all between Mid-November and Christmas.  It was this very week that I had the critical ultrasound and biopsy.  Two days before Thanksgiving I received my cancer diagnosis.  My first meeting with the oncologist and PET scan occurred the following week.  My first chemotherapy happened the very next week.

I am grateful that I kept a blog.  I can remember the big moments – some as if they are in slow motion. But a lot of the detail of that time has now faded.   But having captured it in writing, I am able to read and trigger my memory.  It is a peculiar sensation though, because I feel like I’m reading someone else’s story.  And in reading that story, I am so very proud of the humorous and strong heroine.

Glumly, I am haunted by her.  She is an impossible role model.  She got out of bed everyday with a kick-ass attitude.  She was able to beat cancer!   And even in illness, she was so full of life and so grateful for the people in her life and for all the moments that we take for granted.

It’s hard to live up to her.   She conquered the Big C!  If I’m lucky, I might conquer the Starbucks drive-thru.  She woke up grateful to be alive each day.  I wake up wishing I could sleep another hour.  The small stuff meant nothing to the mighty heroine.  I am sometimes so buried in the small stuff I forget to notice the sunshine peeking through.  She knew her mission and never detoured from it.  I’m no longer sure what my mission is. 

I need to consult with the heroine.  She must be around somewhere. Surely she can give me some advice on how to be more like her.   Strong.  Grateful.  Focused.  I want to be more like this somebody I used to know.

Coming Out

In August I had my routine post-cancer PET Scan and then went to see my oncologist for a follow-up visit to receive the results.  It was not the news I wanted to hear.  My tonsils and adenoids had "lit up" on my scan and they recommended a follow-up visit with an ear-nose-throat (ENT) specialist.  Keep in mind, a PET Scan is not a "cancer" scan.  A PET just shows any area of metabolic activity which can include inflammation, pain, infections, etc.

I went to see the ENT and she recommended removal of the tonsils and adenoids.  She said that it could be nothing, but that in order to really check it out the most comprehensive course of action would be complete removal.  Her logic was that if did end up being cancer related, we could not only diagnose it, but also go ahead and potentially get rid of the problem in one procedure.

And as much as I didn't want to be a 40-year old woman getting her tonsils taken out, I agreed that it was the best plan and we scheduled it.  I had outpatient surgery the Tuesday after labor day.  This was my first real surgery and it went very well.  I was home by lunch time and well-medicated.

Adult tonsil removal is painful and the recovery process is slow.  The first two days weren't so bad because I was still on the many drugs they gave me during surgery.  But as those have worn off, the discomfort has increased.  In fact, the last two days have been the worst thus far.  Additionally, the adenoid removal has caused some sinus issues that make laying down to sleep pretty much impossible.  So between hydrocodone, nearly no sleep, and very little food in my stomach I'm a joy to be around.

I went for a follow up with the ENT today and the good news is that the PET Scan blip was nothing more than that - a blip!  No cancer. My tonsils were apparently just inflammed.  I wish I could drink a glass of champagne to celebrate!  But that would really really hurt.

I can't wait to get this "blip" over with and get back to hot coffee and sleep!

Restore Life - The Way It Should Be.

So, it’s been a while.  I am happy that I haven’t felt the need to talk about “It”.  I’ve been very busy in my pursuit of being a card-carrying member of society again.  Busy working and playing.  Busy trying to forget about the days in which I was a girl interrupted.  And I go for long periods of time without giving cancer a thought!  I knew these glory days would come and they were well worth the wait.

Over the last month though, cancer has crept into my head.  I can name a half-a-dozen people that have passed away from cancer.  No one I know directly, but relatives of friends and co-workers.  Some of these losses are as young as I am.  And although I offer appropriate condolence, in my head I grieve greatly for each of them and their families.  I grieve because cancer sucks and it can hit anyone at anytime.  And we don’t understand who will get it or why.  And I hear about these people who leave children and loved ones behind and the question of “Why me?” rattles around in my head.  Not why did I get cancer, but why did I get to survive when someone else who had a bigger role in humanity was not so fortunate.  I am so grateful that I am alive, but disturbed by the lack of rhyme or reason to the world.

Yesterday I received my appointment for my annual PET scan.  It’s been a year since my last PET scan and about 16 months since I had my first clean scan.  I feel great and I am hopeful for an all-clear, but I would be lying if I said I am not feeling a little bit of “scanxiety”.   Nothing like I felt a year ago, but definitely a little tension in my neck that I can attribute to the anticipation of it.

Enough talk about the thoughts that exist in the shadows of my mind.  Let’s do a dramatic change of topic and talk about my 40^th Birthday.  I am THRILLED to be turning 40 in less than two weeks.  After thinking I might be robbed of another decade of life, I welcome it with open arms.  I am looking forward to celebrating it with my family and friends.  This Leo wants to be the center of attention!  Now if I can just find an appropriate tiara for the occasion…

Living the Dream in the Valley

I’ve been writing bits and pieces of this post since we returned from California nearly two weeks ago.  It’s been so busy since we’ve gotten back that it has been nearly impossible to sit and capture my thoughts.

Vacation was blissful.  It was filled with the best life has to offer – quality time with my husband, remarkable food and wine, breath-taking scenery, and wonderful people.  It was the perfect time to celebrate life and to put cancer a little further in the past.

One of the things I enjoyed most were the stories shared by the people we encountered.  As I get older and as anyone who has had cancer or a similar experience will tell you, life is about being in the moment.  Furthermore, enjoying life is about recognizing those moments and appreciating them before they have passed you by.  I am grateful that I during my vacation I was able to recognize these wonderful moments as they were happening and fully experience the joy!

A highlight of our trip was a private Napa tour we took with Dave from the Napa Wine Project.  Dave and I corresponded prior to our trip, and I told him that I wanted to have an “off-the-beaten path” experience.  Robbie, being an amateur winemaker, loves to talk to other winemakers about the craft and I knew that he would enjoy this type of tour immensely.  Dave did not dissapoint.

The first place we went during the tour was Sciandri Family Vineyards where we met with Ron.  They have a beautiful 20-acre state and currently produce an estate cabernet sauvignon.  I loved sitting on his back porch eating cheese and drinking their estate cabernet while Ron talked about their family heritage and how they got started in the wine making business.  We listened as he showed us a small row of grapes smuggled from Italy that he had planted for the enjoyment of his grandchildren. 

Next he took us to meet Emil Tedeschi from Tedeschi Winery.  We ate lunch at a picnic table outside of his winery, while he told stories about how he started a winery in Maui of all places.  Robbie’s favorite moment of our vacation was when Emil pulled out his grafting knife and literally showed him how to graft a grapevine.  Emil was one of those salt-of-the-earth types and I loved that he spoke as a farmer that works hard to produce great wine.    

The last place Dave took us that day was to meet with Heather Brakesman at Summit Lake Vineyards on Howell Mountain.  Her parents started the winery before she was born, and she grew up in the Napa Valley.  We spent time enjoying a spectacular view, drinking wine, and playing ball with a relentless labrador.    She told us about how all she longed to do while growing up was to get out of the valley.  Now she is back, and listening to her kids talk about how there is nothing to do in the valley.  Her language was colorful and she had a great laugh.  I could have sat there all day.

Even without Dave as our ambassador, we stumbled onto some great people all on our own.  Our week started with George Hendry’s two hour tour of his winery.  He was a straight shooter who had obviously done some hard work during his time, as shown by the wear of his shoes, the roughness of his hands, and the aged skin that had spent many long hours in the sun.  But I loved his cantankerous demeanor and hearing him talk about wine with great passion and a suprising level of understanding.

I think this is one of the first vacations in which I was content to sit for hours and just listen to stories.  I took photos to remember rather than be able to show the amazing places I had been.  The wine was great, but not nearly as great as sitting on a deck listening to music while we listened to someone’s story.

If you ever make it to Napa, I highly recommend veering off the beaten path and looking for the hidden gems.  The big name wineries are great and we did spend some time hitting a few of those.  But those are definitely not the stops that are still resonating with me after I've gotten home.