Ct test Oct 15 - "What do you say in a moment like this?"

I have been writing this post in my head for 6 weeks now but could not settle into it comfortably until now.  There were some missing parts to the story which I didn't know until today.  Today it all clicked and I felt ready to write.

Today's topic is the Ct test results and the result of the results.  A Ct test is a type of imaging where a machine scans you and makes an image of your insides.  It always starts with drinking a clear liquid that tastes weird.  Then you need an iv for the dye injection and you are ready to scan.  Of course you can Google all the medical particulars if you care to.  Here's how it looks.....

Ct test at Hotel Dieu, Kingston, Oct 15, 1012

You don't get results at the test time, you have to go see your doctor.  I find it really, really stressful to sit in my doctor's office and wait for him to come in, open my chart and reveal the findings.  If the results are anything less than perfect I find I can't think then...the blood rushes to my ears and I can't ask any coherent questions...until I leave, have time to process the information and then I have a lot of questions.  My doctor and I have an agreement.  He will let me have my results by fax first, so I can read them in private and have time to think.  I promise him not to jump to conclusions until he and I get to talk.  The fax came on October 30, 2012.  The short form of the results were:  there is a small mass at my bladder, called a low density mass measuring 3.5x1.7x2cm and there is also a concern potentially with my lungs, with small 9mm pleural-based mass and also a tiny 3mm pleural based node, non specific but suspicious for metastatic disease.  Before you continue reading, I want to forewarn you I am going to share how this unfolded with me day by day.  Honestly.  I am nervous because I usually censor who gets to know what, this is my way of protecting the people I love.  But this project is about sharing, sharing it all, so this is how it went inside my world. 

That day I could not speak of it.  Sometimes you need to try it out on someone a little less close to you.  Does that make sense?  When something is going to be very hard to say I "practise" it on someone else first.   So I wrote an email to my cancer friend Janet, who lives in Saskatchewan.  I have never met Janet in person but we have been email friends since 2008 when we found each other on a rare cancer support group online. 

Dear Janet

You are the friend I write to when I don't know what to say to anyone else.  I am so grateful for you.  Yesterday I got the test results we never want to see.  Only three months after surgery there is an other cancer tumor growing in my belly.  But there is more...now it looks like it is metastasis to my lungs.  Not confirmed yet, but there are two suspicious nodes, one in each lung.  I have never had lung spots and with the momentum the cancer seems to be gaining I am pretty darn sure this is the tip of an iceberg.  I am at that disbelief, out of body stage where I am thinking about it but have not taken it inside.  Do you know what I mean.  I am just kind of circling around the information and just touching it with the fingertip of my emotions.  Yesterday I felt very sad.  This morning I find myself thinking about how I will help my family go one without me, what can I give them as tools to cope with the rest of their lives.  Tears are at the edges of my eyes but have not yet fallen.  I think it's because I am still holding this outside of me.  Not yet ready to let it in.  For the moment that is all I can say.

 For the next few days I just let the news sit with me.  I didn't force myself to make any decisions, or even consciously ponder it...I just let it be in me.  Somehow when I do this I start to find peace and then strength to cope.  How does this happen?  It think its grace, God's grace.  I turn my fears over to him, my weakness, my inability to cope and he helps me with it.  Fierce grace.  I noticed that for a couple of days I felt very sad.  Not angry, not depressed, not worried - sad.  I knew my close friends could see something was not right but I was not ready to talk about it yet, so I avoided them.  Didn't let them see me too closely.    About a week into it I knew it was time to talk to Mike.  This is the very hardest part always.  I absolutely hate having to tell Mike something that is going to hurt him.  The cruelest thing about my cancer journey has always been those moments when I see the pain cross Mike's face.  How does one do this?  How does one tell their life partner bad news?  Well, you just start.  I say I have something to talk about.  He glances over and says what?  I say sit down with me, it's important.  Now he gets more serious looking.  I sit close to him, because I need to touch him somehow...usually just with my leg on his leg. Holding hands would be too much.  And I start talking.  I can hear my voice, it's as gently and quiet as possible, trying to soften the words.  I can't remember exactly what he says but he pulls me closer, this I remember because it is exactly what I needed at that moment.  Because he has a choice, he could choose to push me away and protect himself from the hurt.  Even for just a moment.  But he does not.  And in this moment, in this way, he affirms that he will always be there with me.  And that is the best thing anyone can ever do for someone you love.

"When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not

knowing, not curing, not healing, and face with us the reality of our powerlessness, that is a friend who cares."  Henri J.M. Nouwen

I would like to tell the world "I have the best husband in the world" which I say for many reasons.  I just wanted it in writing.

The next hardest step is telling our children.  And my parents.  My sister already had it figured out and bless her, she let me get to talking about it in my own time.  If I could wave a magic wand and make anything magically better it would be this business of having to tell bad news to people you love. 

The next phase might be best shared with my next email to Janet.


I am so sorry I have not written to you since my initial panic filled email.  There has been a lot going on in my life but first of all I want to jump up and down with you with joy to say I feel great today.  Now, to back up a bit....

Cancer stuff - I have seen my doctor in Kingston and he put some perspective on the new growths.  They are slow, very slow growing.  And they are all in very operable locations.  So, his take is that when the time comes, and it could be 6 months to a year, the surgery to take these out will be possible and not too difficult.  This has allowed me to calm down and breathe again.  I have been very sick though.  Happy to say I am better now but I was sick for about 6 weeks and I did wonder if this was my new reality.  What happened is my digestive system got all messed up.  I had all this cramping and pain in my small intestines and bowel, really intense stuff.  Vomiting, inability to eat or even take liquids some days, I was dropping a pound or two a day in weight, I was quickly becoming a shell of myself.  Doctors were not helping much.  They said it was side effect of all the surgery and adhesions that form because of it.    It was up to me to solve the problem.  I found osteopath massage - have you ever heard of it!  wonderful stuff!  massage of the fascia...basically she massaged my insides to break down the adhesions and scar tissue and help my organs get back to where they needed to be.  Lot of enzymes and probiotics too.  I lots 20lbs over it, have gained back 5lbs now and am at a healthy weight.  My energy is back, my body feels strong, and I can eat again so now.  It was rough, scared me I will admit but now I can put it down to yet another learning experience.  

My next step is a second opinion with the doctor in Montreal which I go for this Thursday.

Your friendship means the world to me.  I read your reply to me over and over and gathered so much strength from it.  You knew just what to say.  You are the friend that knows how to just sit with me, hold my hand and feel the pain with me.  God Bless you.

Love
Teresa


My appointment with the doctor in Montreal (still not sure if it is considered correct or incorrect to blog the doctor's real names) helped settle me even further.  He also agrees that these new growths are small and seemingly slow growing.  And there are still good treatment options to consider when the time comes to act;  a radiation technique called stereotactic radiation, second line chemo drugs and surgery.   The plan is to do a Ct scan again in January and reassess the situation then.  I am comfortable with this plan.

I should have been able to blog after this appointment but there was one thing I had not take care of yet and it wasn't until today that I knew it was the missing link.  My dear friend Louise, who not only walks my cancer journey with me, but guides me.  Best explained by sharing the email from today.

Dear Louise

There is much I need to catch you up on.  I have held back sharing with you as I sensed your plate was very full and I was okay to handle things myself.  It's only because of you, and what you have taught me these past years, for which I am so grateful, that I felt okay to go it on my own for a bit.  ...explanation of test result and doctors opinion was here...finishing off with what I heard from the doctor in Montreal... He didn't feel it was a terrible turn of events, he made us very comfortable that my disease was still well under control.  It's a chronic disease he reminded us, one that we are still in control of and I am living a good life with.

Love Teresa

and Louise replied:

Dear Teresa,

The past few months of your 'quietness', regarding your health, gave me the sense that all was not well.

Even so, I told myself that you would let me know when you were ready.  Yesterday morning, after

reading your words, revealed to me that it was I who was not ready.  I had no words.

Sometimes, we hope against hope that all of this was not true.  Not for you, not for your Dad, not

for Bill and, certainly, not true for the little children of Sandy Hook Elementary School.

Life hurts us and makes us cry a thousand tears and then a thousand more.  But, we also know

great joy and sweetness ... sometimes, we just have to look for it.

That you have found your own joy and sweetness, as shown in your writings to me and to others

on ACOR (support group online), goes a long way to give meaning to living a life of 'truth'.

You are brave and an inspiration. I thank you for your choices ... and sharing those choices with 

those who may need to look at them, know them, and borrow them for ourselves.

Love,

Louise

I feel that this chapter of the story is complete and the next chapter is ready to begin.  An ending and a beginning.  More tests will need to be done, more decisions will need to be made.  More lessons have been learned.  Life is fluid, always flowing, like a river.  There are rocks in my river and at times the current is not so strong but it is always in motion.  The river my life is will find a way around (or over, or under) the rocks, it will gather strength, it will be fed more water, it will flow on.  And it is beautiful as it flows.
Fluid motion.  Fierce grace. 

our Owyhee river adventure, 2012, learning the river

Sharing our stories

"When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else." - Iyanla Vanzant

 “Live your life from your heart. Share from your heart. And your story will touch and heal people’s souls.”  -  Melody Beattie

This evening I was given a gift; a reminder of the power of sharing your story and speaking from your heart.  I was asked to speak at an event celebrating International Day of the Volunteer. I have never been a keynote speaker before and to be honest was feeling quite overwhelmed by the responsbility.  However, when I arrived a couple of special ladies made a point of making me feel comfortable and competent.  I decided then and there not to think of it as a speech, but instead as just having a chat with some good friends.  I shared some of my story and as I looked into the eyes of those listening I realized yet again that we are all yearning to connect with each other.  And we connect when we share our stories.  

There is an amazing organization, the Liddy Shriver Foundation, that provides the best support in the way of information, resources and research in the world of Sarcoma cancer.  This organization is encouraging those touched by Sarcoma to share their story on the website.  I would encourage you to spend some time exploring their website www.SarcomaHelp.org  

Here is where my story resides:

 http://sarcomahelp.org/stories/liposarcoma-teresa.html

Stories being shared at Sarcoma Step and Fetch 2012

From the beginning...

My cancer story began well before I knew it was there.  In hindsight, which of course is always 20/20, I can look back at an obstetrical ultrasound done March 5, 2002 and realize we all should have questioned the “ill-defined area” which was my tumor.  But the obstetrician did not question and I had not yet learned that you should always read your own reports.  My son was born October 11, 2002 and I thought all was well in the world.   But a year later I am still struggling to lose the baby tummy.  Despite my attempts to eat well and exercise my tummy just won’t get flatter.  I feel very foolish but finally in November 2003 I visit my family physician who, God bless him, takes me seriously and sends me for an ultrasound.  Things move fast.  The ultrasound shows a large mass and I am referred to the Kingston Cancer Center, suspected of having an ovarian or uterine tumor.  Surgery is booked for Dec 19, 2003.  Life is a whirling around me and before I know it I am heading to the OR room.  It ended up being a retroperitoneal myxoid liposarcoma measuring 25 x 25 x 25 cm.  No clean margins were possible with this type of tumor and no further treatment was suggested.  At the time I am very unaware of the seriousness of liposarcoma and feet I have just had a onetime close call.  I go on with life not really giving cancer a second thought.  

Regular CT scan follow up continued and I really thought nothing of it.  In fact, fall of 2006 I had a requisition in hand and was to book my own scan with Northumberland hospital as it was closer instead of going to Kingston and I hadn’t bothered to do it.  My best friend likely saved my life the day she said “hey, shouldn’t you have gone for a scan?  Give me your requisition and I will book it for you.”  Thank you Brenda!  She booked my scan in January; I went and then left on a holiday.  Upon my return the Dr.’s office was trying to reach me.  Something was suspicious on the scan and they needed to see me.  Long story short again, I was back in the operating room February 21, 2007 where they removed 4 tumors, all recurrent myxoid liposarcoma.  

Between February 2007 and February 2008 I embarked on a personal mission to lose weight, eat well and exercise.  I felt very successful having reached my ideal weight, taking in 2-4 cycling or cardio classes a week and lifting weights.  I felt great, had my stress level under control and was enjoying life with my husband and kids.  If physical fitness could control cancer then I should have never have had a recurrence because I was the model of good health.  

My health initiative did not stop the Feb 7, 2008 CT scan showing a new mass and I was referred for a second opinion to Mount Sinai and Princess Margaret Hospitals in Toronto.  October 31 the sky falls in on my world.  My case was discussed at the tumor board and the decision was my tumor was inoperable, radiation was not recommended and a cure was not possible.  Perhaps chemo (doxorubicin) would slow down the symptoms.  I will never forget that day.  I can’t really believe what I am being told, that this tumor will slowly but surely take over my body.  I begin to fight, fiercely.  I search for other answers.  I simply cannot accept that this is it.  I have heard it described as crazy, courageous, foolish, expensive, miraculous, understandable or even unbelievable and I am not recommending this step to anyone else but what I did next was seek cancer treatment in Mexico.    Under the care of an oncologist I was treated with a low dose course of radiation combined with chemotherapy, which we paid for ourselves.  At this point in time my scans shows I now have 3 tumors; overlying the renal arteries, the vena cave and the pelvis.  I spent the next two months at home, recovering strength and weight.  February 10, 2009 I booked myself a MRI scan at a private pay for use clinic in New York.  This scan showed dramatic shrinkage of the tumors and I am encouraged to seek a surgeon to remove the tumors.  A surgeon with the KRCC is very cautious but after discussing all of the potential risks with both myself and my husband agrees to operate Feb. 17,  2009.  I cannot thank him enough for his skill as a surgeon and his willingness to let me have my chance at living longer.  According to the surgery notes “a long, tedious dissection was undertaken and we were able to get this tumor off of the renal vessels and off of the vena cava and remove it completely…and again excised the pelvic lesion in a similar fashion”.  All tumors were resected, all three were identified as recurrent myxoid liposarcoma.  

Again I wish I could say this was the end of the story, but there is much more.  As you read this it will seem that I keep getting my life waylaid by cancer but when I look back on it that is not how I feel.  I feel I have lived so much life between today and the original diagnosis in 2003.  Events in my life stand out now, like pop-up books and there are so many of them.  I have been blessed by others who have shared their stories, I have learned, loved, grown.  Life is so rich now.  So don’t start to feel sad or discouraged as you read on.  Know that each crisis was a platform from which I was able to spring from, up and onto the next step in life. 

The cancer came back in summer of 2010 and through the help of an online support group called ACOR, I met fellow Canadian, an angel of a woman, who encouraged me to seek a second opinion from the Segal Cancer Center in the Jewish General Hospital in Montreal.  I met an oncologist there in the Young Adult clinic and was impressed with how while being candid about my prognosis he also offered me the hope of treatment options.  The tumors were scattered this time, like a dusting of cancer all over my abdominal wall.  Chemotherapy was suggested and I embarked on a new adventure.  Every 3 weeks I would go to Montreal for a 3 night stay in the hospital to receive chemo infusion by IV.  I became bald which was kind of cool in a twisted way.  I discovered I have a well shaped skull and since I don’t like fussing with my hair, putting on a scarf or hat suited my style just fine.  Chemo also makes you tired, fat, nauseous, irritable and forgetful.  It was a long 7 months and although my family won’t admit it, I bet I was a little unpleasant to be around.  However, it was all worth it! as the cancer was going, going, gone and by April 2011 my scans were showing no evidence of disease.  

Summer 2012 finds me with the cancer back again..this time the scan shows one tumor but its growing fairly quickly.   Surgery is recommended this time and they operate on me at Kingston General on July 19^th.  My incision is always pretty impressive, this one was 29 staples and surprise instead of 1 tumor the surgeon finds 3 of them.  I am appreciative of his skill as a surgeon.  I heal, spend the summer playing with my kids and celebrating life.  

I get scared at times but I have learned how to not worry. I pray, I love, I laugh and when the scary creeps in I respect the feeling, honor it for what is it and then I look at my life with my eyes wide open and see how incredibly wonderful it is, right now at this moment and I can't help but smile and feel blessed. I live soaking up each moment as it comes, rejoicing in the awesomeness of it all. 

photo taken on the Owyhee River trip summer 2012

There have been so many lessons learned through by cancer journey.  I wish there was room to write them all down here but I feel that would be more of a book than a story.  Lessons of love, giving and accepting help, courage, fear, determination and giving in, commitment, friends and family, being honest with your kids and giving them space to grow, reaching out, reaching in, the power of fresh air, good food and knowing that no matter what your husband is there with you.  I am a fortunate woman.

God Bless,

Love Teresa

Some of my diary clips:

Feb 8, 2011, letter to a cancer buddy

I am finding things difficult and it bothers me that I can't get over it. In my mind I know this not reasonable but I don't seem to be able to make my heart know it.  Here is the embarrassing part - my disappointment is because I thought I had wonderfully skipped past the need for surgery.    Yet today when we saw the oncologist not only was surgery back in the plan but he also tossed in 2 more chemo cycles.  Double POW.  Like I said, in my mind I know all the good stuff.  The chemo is working exceptionally well, we are getting better than expected results and I am now a surgical candidate which was not possible 6 months ago.  It's all very, very good.  I can see the disappointment in people around me too.  I guess what happened is for a week we lived without cancer and then we had to take it back.  I am actually really angry at myself for jumping into saying the cancer was gone and no surgery was needed.  I should have read that report more carefully and been my usual questioning self.  I let my guard down there and now it has hurt a lot of people around me. 
It's also making life crazy, last week we were filling up my week with plans and now I am leaving for chemo and all this stuff I was going to be responsible for I cannot be.  It' hard to push all that off of my plate, it makes me sad to not be able to do these things. 
There, that is the ugly truth of it all... Please know I really needed this chance to vent, this is the worst of it and I feel much better for having put it into words.   Just don't hang onto to this message too long, it's like a good cry, once it’s done it done and we can move on.

June 2009, a letter to Bernie

I think of you as one of the cheeriest people I know!  I have always enjoyed talking with you.  Of course it helps that you that you have a really awesome accent!  Cancer changes you forever, but some of the changes are good.  It taught me to enjoy the day that I have in front of me, right now.  I have quit putting off doing things tomorrow.  Today I am going on a school trip with my son.  Last year I would have said no, I was too busy at work and I would have promised him next year I would go.  Not anymore.  I realize it may be 5, 10 or I hope 40 years from now, but there will come a time when I am not here to see him grow and I should be enjoying all I can now.  Live in the moment.  Love the day you have before you. 
You are so right, life is a play.  You never know when the curtain call will come but we can do our best to make our play the best ever no matter what.  Part of that is having good friends.  You are my good friend.  Thank you for being my friend.  I hope I am a good friend to you.
Teresa  

rest in peace my friend (Bernie was a very cool Scottish Kayaker)

Bernie Gray, died of cancer at age 69

Sept 2009, beginning chemo thought

I was out running this past Saturday morning and it was a typical fall
day, breezy and cool.  The leaves were blowing off the trees and
swirling around on the road in front of me.  I felt God was speaking to
me, wrapping around me like the wind.  I heard him say "It's okay, it's
your fall season and all seasons have a reason. Your fall, just like the
trees, is a time to let go of your leaves, to quit growing and focus
your energy into your roots.  It is a time to use your inner strength
and prepare for winter.  Winter will be a time of rest, regeneration and
renewal.  It will be a quiet time, with peace and sleep, a healing time.
Though you won't be able to see it a lot will be happening deep in your
roots as you build strength in preparation for Spring."  When my Spring
arrives I will once again flourish, growing, reaching for the sun,
showing my leaves for all to see.