Wouldn't a support group be great....

June 11, 2016  8am

Just home from the Sarcoma Symposium in Toronto yesterday.  An amazing day of information and meeting new people.  At the Patient Forum, after we all shared a bit of our story in the circle, I noticed so many people astounded at how good it felt to connect and also health care professionals touched by hearing, seeing, feeling how their patients felt when they were honestly and openly talking to each other about their cancer journeys.  It was a good feeling in the room at that time J.  Immediately after people start talking about how to keep it up – email list, forming a facebook group, etc.  All wonderful and needed but I want to suggest that this probably is actually already available to all of us.

So how do you not feel alone?  How do you talk to someone who understands you?  How do you reach out?  We all want to connect in the way we are comfortable with and this varies…this might be the first thing we need to recognize.  That just because the person next to us gets a lot out of connecting with others on facebook, that might not be for us.  Maybe we really want to read a book written by someone we feel we are connecting with.  And at different parts of your journey how you want to connect will change perhaps.  But I do think we all need to connect.  It’s one of our basic needs and as much as we would like it to be handed to us like a prescription it does not come that easy.  We have to be the ones who do this for ourselves.  And that I think is the thing we the patient need to most recognize…that not feeling alone in this big mess of cancer is a choice we get to make, each and every day.  Is it all on our shoulders?  I am not saying that because yes, our health care team can help…they can offer ideas when we look like we are lost, or when we ask.  They can make things more easily available when we do choose to seek.  And yes, those of us who are in the cancer journey can make ourselves a bit more available to others.  But ultimately, we need to take responsibility for our own health…and that has many facets to it…one being making sure we emotionally are not alone, that we are getting support both emotionally and in learning from others experiences, to help ourselves.

Looking back over the last over the last 13 years of cancer in my life, I recall these are some of my ways of reaching out: …

-          Reading books written by other cancer survivors.  I have a pretty big collection of books now, and they range from books that inspire, books that teach, books that make me laugh and books that help me cry.  Reading books was probably the first way I sought support from others.  I keep them on a shelf in my room and they are honestly like having friends with me, because I think when someone writes a book they are putting their heart into it and when we read it, it does become a way of feeling you are with a friend.

-          Internet chat groups.  I recall a phase when I felt very much like I was the only one with my particular diagnosis and I started looking up rare cancer sites, and signing onto their chat groups.  Sadly, a lot of websites are no longer active (this is a warning bell that always goes off in my head when someone says let’s start a online chat group) because the persons who started it are no longer monitoring it.  But it’s like fishing, you put a lot of lines out and sometimes you get a bite.  On one of these ‘rare cancer’ sites I got a response back from someone who also lives in Canada, but in another province.  Her and I emailed each other for years and provided each other with a tremendous amount of support.  We don’t chat now, that season has passed but I still call her my friend and get a warm feeling in my heart when I think of her. 

-          Facebook groups.  Again, it’s like fishing.  You have to join quite a few and find the one that feels right for you.  Things like the frequency of posting by group members, the moderator (side note – I do think it’s important to join a group that has rules of conduct and a moderator for your own safety), and where the members come from geographically may affect if it’s a good group for you. 

 Use a reliable cancer support organization – something well established, reliable and accountable such as The Canadian Cancer Society or disease specifics groups like in my case The Sarcoma Cancer Foundation of Canada, The Liddy ShriverFoundation, Young Adult Cancer Canada, Sarcoma Alliance America.  Find what fits with your situation but do your homework and ensure the group is reliable, trustworthy (and not selling anything!).  These type of organizations often offer patient to patient chat groups, peer support services, conferences, small group get togethers and stories from cancer survivors you can just read on your own.

  

-          Tell others how you are feeling and that you are looking to talk to someone who understands – people want to help but you have to tell them what you need.  More than once someone has called or emailed me to say “I have a friend who _______ and I wondered if you would talk with them?”.  I and many other cancer survivors are happy to do this.  So ask, or ask for your friend. 

I am run out of thoughts now (aka tired) but I come back around to how I felt at the circle time yesterday.  We all need to connect in some way at some time.  So please, go a little bit out of your comfort zone, push a little bit past what your energy says you feel like, go out on a limb just a little bit – please choose to do this for yourself when you need it.

With much love,

Teresa

ps - one of the best things I ever did for myself was go on a Survive and Thrive Expedition.  Words cannot described how good it was for me...not just fun but truly healing and learning and empowering.  Please, please - if you are a cancer survivor between 18 and 40ish - give yourself a gift and go on an expedition.  Don't over think it, just go!  And if finances are a challenge, contact Fight Back Crew Young Adult Cancer Support as they can help.

pps - as I was looking for pictures to add to this blog post, I was reminded that often people we connect with are in our life just for a bit...perhaps even just one time.  I had a hard time with this because I felt I needed to continue the connection.  Sometimes you don't.  Sometimes you connect with someone for one reason or just one season of your life.  And it's okay that they move out of your life and you let them go.  I think the critical thing is to be grateful for the connection at the time, and ever after.  Gratitude will keep the memory and the good feelings in your heart.  Gratitude is how you pay them back for what they gave you.  Gratitude is what will encourage you to help someone else.

pps - I was praying on my way home from the symposium - Lord, I am so confused right now, much of what I have heard at this function has left me with more questions than answers.  What was the sense in me going?  Why was I there?  It seems I now even more more mixed up about the things I was seeking answers to (I was seeking answers about my own personal cancer journey).  This morning I woke up with this blog on my heart.  I sat down with a coffee and the words poured out of me.  God is Good !!! 

ok...here are some of my fav pics of moments when I was connecting with others over our shared cancer stories....my heart is full of gratitude for those who have walked alongside me, and allowed me to walk with them.  I could have added a thousand more, I have been so blessed.  So much love.

A few from Survive and Thrive Owhyee River Expedition 2012....

And Survive and Thrive Grand Canyon Expedition 2013

Choosing chemo treatment again - same gig, new tune.

Earlier this year I had made the decision to be ok with choosing no treatment, knowing I still had tumors and these tumors would continue to show progression each scan.  The rationale was that the tumors grew slowly, no pain or symptoms, quality of life was good and treatment was not going to 100% eradicate the disease from my body.  So it was a good option and I was happy with it.  And then.....

The first of March I felt a lump; hard, round and the size of about a walnut, close to the surface of my skin, low in my pelvis, almost in the groin area.  I have never had tumor that could be seen or felt at the surface so I was not sure.  It could be something else.  I watched it for a few weeks - it grew and started to make walking hurt.  A CT scan was already booked for March 17, so I called my oncologist in Kingston, Dr. Gregg, and expressed my concern.  He booked me an appointment to see him the same day I went for the scan.  Awesome care.  Dr. Gregg waited for the report of the CT, then we talked.  Yes, it was my current tumor situation but different now is it had grown through the abdominal wall and was forming a tumor between the skin and muscle layer.  And the growth was such that he was recommending I consider a treatment option.

In my typical fashion, I wanted to explore my options.  I discussed radiation with Dr. Faulkson in Kingston Cancer Centre.  I explored clinical trials by consulting Dr. Razak at Princess Margaret. I also talked with other medical professionals by email.  Dr. Gregg presented my case at the tumor board and reported back that radiation was ruled out as too much risk to my organs, a newly FDA approved saracoma chemo drug called Eribulin (Haloven) was too toxic compared to the potential and it is not yet approved for funding in Sarcoma (only breast cancer) and the combined expert opinion was my best option was an older chemo regime known as Gemcitabine and Docetaxel combined.  Here is a 2007 study link on this drug.  It is normally a 3 week cycle, but we are going to give me 4 weeks to be a bit easier on my system.

April 14 was my first treatment - Gemcitabine only.  This was done at the Kingston Cancer Center (at KGH) and I was impressed by the system, nurses and facility and all went smoothly.

April 22 was the second part of the first cycle - Gemcitabine first followed by Docetaxel  The Docetaxel is more toxic and included a few surprises...the worst being ice gloves and ice socks!  Seriously, I wore them for 90 minutes! The ice is to protect my nail beds so I wore them, even though I hate cold feet, as the thoughts of losing my nails and getting infections was even worse. As well I need to take steriods (Dexamethasone) for a 3 days. It was a longer day as we had arrived at 12 noon but by 5pm we were on our way home.  24 hours after the Docetaxel I am to give myself a Neulasta injection.  I am familiar with this, as I did the same when I was taking the MAID chemo regime in Montreal back in 2010.  Or at least I thought I was familiar with it...but the day after the shot the side effects started and there came the surprise.

Side effects...the big factor in is treatment worth it?  The first part, the Gemcitabine, was easy to manage.  I was more fatigued for a few days after, and my skin became more sensitive to sun but all in all very manageable.  However, the combination of Docetaxel and Neulasta was a different story.  Sunday evening everything started to hurt in my bones and muscles and by Wednesday the soreness had manifested into a pretty severe headache and back pain.  Thursday the pain hit it's high point, and it was pretty bad.  But then Friday morning all was better, by afternoon the last of the headache was gone, and I was feeling much more like myself again.

May 11 it's back to Kingston Hospital to meet with the oncologist and discuss the next cycle of chemo.  Some adjustments need to be made...a burn developed on my arm, a result of some chemo leaking under the skin at the injection site so we have opted to go with a PICC line now.  The pain it seems was a side effect of both the Docetaxel and the Neulasta, so I am going to double the steroids (watch out family, no sleep for momma and the Roid-rage is going to get worse, I am sorry) to help reduce inflammation and improve recovery time.  And I will get some Tylenol with codeine for better pain control when needed.  My blood counts are acceptable so Cycle 2 can begin tomorrow.

HAIR TODAY, GONE TOMORROW
I hope my tumor responds as quickly to the chemo as my hair has!  Quickly moving towards not needing my hairbrush any more.  Hello hats this summer :)

Hair thinning out

Bald spot appearing

Molting chicken look

Ick! keep that out of the drain

Hat On :)

Being a Mom with Cancer

I think one of the biggest impacts cancer has had on me was to change me as a parent.  A parent who loves the small moments...strives to spend time but even more than that...I relish watching them grow up...just to be present as they move though the ages and stages of growing up is so incredibly special to me.  

When I first felt the pressure of my cancer diagnosis I thought of all the things I wanted to teach them, tell them, impress upon them.  But with time, that changed.  They will develop into adults just fine with or without me.  Now I want to share the real me with them...who I really am, with all my faults and quirks. 

Earlier in my cancer journey I thought thought about all the things I needed to teach my children.  I worried had not taught them enough about cooking, or growing food, or budgeting.  I had not taken them to church enough, read bedtime bible stories.  I had not told them enough of their family history.  How could I make up for all this in the time I had left? I worried about the things I might not be here to help them through; schooling, weddings, babies, first homes, job loss, fights with their spouse, illness...oh the list went on and on in my head.  How could I make up for this?  And then God put in the lives of my daughter friends whom had lost their mothers and I could see that although they miss their moms, all these things I was worrying about he had taken care of in other ways.  And then a read a book by a mom with terminal cancer and she spoke so wisely of the community of women that she knew would surround her children when she was gone.  And not just for a week or a month, but women who would walk alongside her children through all stages of life.  Aunts, sisters, grandmas, cousins, mother-in-laws, friends, co-workers - they will be there along the way. It will be okay.  God has this.  He knows what to do.  

Once I let go of all these anxieties, I was able to uncover the true sadness I felt about living with cancer.  Here it is - I am sad about the things I will miss.  I cry a little inside every time I say it to myself.  But, here is the big thing - all my stress and anxieties were blocking this truth and the beauty of this knowing this truth is that over this I have control and choice.  So I made a choice and I strive to remind myself to live by this choice everyday.  

This is what I choose:  I will delight in the moments of my children's lives.  I will delight in being here to see them become their own unique selves.  I will delight in being able to comfort them, or at least sit beside them, in the hard moments.  I will delight in celebrating their accomplishments with them.  I am grateful for the simple gift of being present in their lives.

..."moments of being", those times when life becomes so concentrated that an individual moment seems to exist forever. ~ Virginia Woolf, Giving Voice to Sorrow  

"When I fully enter time's swift current, enter into the current moment with the weight of all my attention, I slow the torrent with the weight of me all here." ~ Ann Voskamp, One Thousand Gifts

Giving in is not the same as giving up

“Giving in is not the same as giving up.  Giving in is not weakness, in fact it takes a lot of strength.”  Teresa Bell Facebook post Jan 2106

There was a time many years ago that I remember writing in my journal “I will not accept walls in my life.  I will crash them down, climb over them or dig under them.  Whatever it takes.”  At the time I was in the hospital for a week of IV antibiotics treating a system infection brought on by my PICC.

I would no longer write this of myself.  So where am I now?  Somewhere different but it’s a good place. 

Since 2003 I have seen a lot of cancer doctors, been to a lot of hospitals, had a lot of chemo and related drugs, surgery, radiation, have logged a lot of miles for medical care, and spent a lot of time, energy and money in the pursuit of control of my cancer.  The ripples of this have been felt far and wide among my family, friends and work.  Has it been worth it? ABSOLUTELY. My life has been so rich; full of wonderfulness, love and joy and I am grateful for every moment of it. 

The doctors tell me there currently is no other treatment options for me, nothing that in their opinion will be of benefit.  I have heard this before but the difference is that at this time I concur.  I don’t want to have surgery or take a drug just for the sake of “doing something”.  I am okay with just letting things be for now.  In fact, I am looking forward to some time without a calendar full of medical appointments, side effects, not devoting time and energy to cancer.  I tried two clinical trials in 2015, and at present there does not seem to be anything else available in Canada that I qualify for.  At one time I had thought of going to the US for clinical trials.  But now I feel the toll it would take on myself and my family, along with the risks, is not worth it.  So instead of banging down medical walls, I am going enjoy the view from this side.  This view includes more time at home and with family, more time for the things I enjoy, simplicity, quietness, more predictability and choice.  
It’s not giving up; it’s choosing to enjoy the moment I am in.  

Holly's first ice-cream cone

Ice cream is fun at all ages when you eat it together

Mike and  I on date night 

out with my young man Tanner

Fam time building house

Fam time building barn

the power of a woman with a new vacuum

Being in the light, before I can see the sun

It's Jan 8, 2016 and I am sitting in the darkness of the early morning, (on a beach in Mexico to be exact).  I have been abundantly blessed with a week of vacation with Mike, Paula, Derek, little miss Holly, Kaitlyn and Tanner.

I got up early this morning as I wanted to watch the sun rise over the ocean.  At 6:30 am it is still dark.  I sit quietly; listening to the waves, listening to my heart, seeking my Lord's presence.  Striving to be in the moment, not reviewing the past, not planning the future, just sitting in the here and now.

This is what I wrote:

I sat in the dark.  I could not make the light come.  I could only wait, staying aware.  There were steps. At first looking out over the ocean I could only see darkness.  In time I realized I could see where the beach sand met the ocean water.  Some definition.  Then more clouds became available to my sight and a sliver of moon.  They had been there all the time.  It's not that they just arrived, but my ability to see them changed as the light arrived.  And yet, I could not tell where the light came from.  It just was.  Now it is fully light and yet, still, I don't see the sun.  But I do see it's effects in the view in front of me.

In time, a glorious red ball of sun rose up over the horizon and into the sky.  It was just as beautiful as I had anticipated.  And yet, it is the lesson of the light that I think was the reason I was on the beach that morning.

feeling such abundant grace, love and gentleness around me,
with peace and hope,
God Bless,
Teresa

Being honest about a tough time

 I continue to write this blog because of what I learned on a Survive and Thrive Expedition spending 8 days with an amazing group of people who shared the common experience of cancer.  I learned that when we share our story in an open and honest way we can help someone else in their journey.  And we also can help ourselves. I wrote this blog three months ago,but did not post it.  It is like opening my heart red raw and bare and I am afraid, but I feel strongly compelled to share it now.  It is a part of my journey, and if it's a part of my journey it may also be a part of yours.  And maybe God wants me to tell you it's okay.  

This blog is never to give advice, it is only to share my journey so that you may take from it what is good for you.  Do not fear for me.  I have healed a lot since I wrote this.  A few days after I wrote this I shared it with someone close to me, someone I trusted and felt could bear hearing my words.  And I sought professional counselling.  And I gave myself time and gentleness.  

"When you come to the end of yourself, that's where something else can begin."  Kara Tippetts

I wrote this Oct 15, 2015.  I no longer feel bent so low but I want you to know it has turned out to be an amazing place to go from.  It constantly amazes me how the complex paths in life can open our eyes to the amazing and wonderful.  It's like light that was always there but we did not realize it. 

so here goes......direct copy and paste from my journal...

I need to talk about what I’ve been going thru but it’s hard, it’s more personal than anything I have shared out loud before ever.  Much has happened and I want to catch up my blogging.  The short story is I became very sick over the summer, spent the month of July in the hospital, and then August and September recovering at home.  I am still in recovery mode I recognize now, but it’s a complex recovery, not just muscle and skin.  I will write about the summer hospital experience in another blog, with lots of medical details to share.  But today, today I must write about my heart and mind and this place I have never been before.  It’s hard, because it’s things I have kept so deep within myself.  Some who know me well and love me strongly have seen a glimpse of it in my eyes I think.  And I am only writing of it now because through this I struggled to feel God, I felt I could not hear him and I was lost.  But his grace broke through my barriers, he found me and loved me.  And now I should share because the telling of my story may help someone else.

I’ve lost my place in the world.  I used to feel confident in my positions…wife, mom, business partner, volunteer…I contributed, I did things, I moved ahead, accomplished, and people counted on me.  I now feel inadequate.  It’s a short sentence and just one word, but to just speak it in my head brings tears to my eyes.  Inadequate.  Feeling inadequate has pulled the foundation out from under me. 

Yes, part of it is not being able to perform as I used to.  I am not a powerhouse at work anymore, I don’t think I could pull off even a family dinner or if I did it would take me a whole week to do it.  Things don’t rapid fire in my brain anymore.  Women do this…we are like zing zing all over our brains with thoughts and I don’t have that now.  I think, but of one thing at a time and often I lose the thought before I can bring it up.  My world is lists and reminders of what I want to get done or else I would simply forget day to day.  Physically things are different, and I don’t understand my body.  Sometimes it feels strong and able.  Often I am short of breath, lacking muscle strength and worst of all just plain tired.  Sleep eludes me. 

But the real struggle is deeper than muscles and brain cells.  At times a sadness just wells up in me, like a bubble that starts at the base of my ribcage, forces it way up the center of my chest, into my throat and finally the pressure leaks from my eyes and exhales thru my mouth.  I hang my head and question “what, what do I do now?”  And there is no answer.  Just a hollowness.  What is this?

What is this?  It could be stress, my way of processing the trauma my body went through over the summer.  It could be change; that my life is changing and I am not good with change that I don’t direct.  It could be that I am not sure of my direction in life, that this will take time to sort out. 

I’ve lost connection with people.  Some very close to me and this hurts the very most.  It’s a deep knife in the gut when I think on it.  How do I find the connection again; feel close and comfortable, with purpose, bringing something to the relationship?  How do I not feel inadequate? 

I have been given so much through these past 4 months.  Given so much love, care, thoughts and prayers from those around me.  And yet, I don’t know what I have to give back.  It’s not enough to just be present in their world…for me it’s not enough…how do I find my way back to fullness?

What am I missing in my seeking?  Is it time and patience?  Is it something more than that?  Am I seeking the wrong things?  Am I letting life stuff (work, bills, houses, etc) take over who I am?

There are days that feel very deep…sinking deep into something that I can’t pull out of.  I know it’s a place that is wrong for me. 

But this week, after one of the hardest days, a vivid rainbow appeared in the sky, and later I saw one of the most brilliant sunsets ever.   And I felt God again.  I felt that his love has always been there, I just lost my ability to accept it.

There is a massive lesson in all of this that I am in the process of learning.  I’m at the awful part, where I don’t have a clue.  I’ve just assembled the parts of the problem, and maybe not even that is done yet.  Usually I write once I have sorted it out, but this time I am sharing at this stage (sorry, not true, I did not share til now that I have moved on from this place in my journey, this written today Jan 16).   It’s not pretty.  It’s not uplifting nor inspiring.  It’s just honest. 

Do not fear for me.  Do not feel you need to lift my spirits or cheer me up.  Just walk alongside me.  Be honest.  Be real.  Most of all be kind to each other. 

much love,

Teresa

Clinical Trial try #2 - MG1 Maraba/MAGE-A3

Trial - as a verb means "test"

In September I learned there was another Clinical Trial being offered in Canada that I would qualify for.  It was the Maraba Virus and you can read the official details at https://clinicaltrials.gov/ct2/show/NCT02285816

The Maraba virus used in this trial is a rhabdovirus and has this bullet-like shape. It was discovered in sandflies around the Maraba region of Brazil, and has been engineered to seek out cancer cells and do two things. As an oncolytic virus, it replicates inside the cancer cell and destroys it, while also triggering an immune response that recognizes the cancer as a threat. 

Read more on the CTV news article http://www.ctvnews.ca/health/canadian-study-to-use-two-cancer-fighting-viruses-in-world-first-1.2463322

I decided I wanted to try it.  And yes, I was nervous after what had happened with the last clinical trial. 

I was approved for the trial and the schedule was set out as follows:

• Tues 27 Oct, for signing of consent, blood tests, urine sample and ECG. 

• Wed 28 Oct, CT scan (here I will tell you that for the first time ever I vomited during the CT scan!  it was awful!  I get nauseous often when the contrast dye is injected and chewing gum has always been enough to get through it.  Not this time.  All of a sudden, while lying flat on my back in the CT machine, I vomited straight up in the air - all over the machine and then the vomit came right back down into my eyes and all over the place.  Horrifying.  The technician was so kind.  First he said, "OK, that happened but now we have to do the test" so I lay still, held my breath and got scanned.  Then he handed me some towels, helped me get up, again assured me this happens as if it was just another everyday occurrence, and gave me a clean gown to wear home.)

• Thurs 29 Oct, biopsy will be done in the ultrasound department. Expect to stay with us for 4 to 4 1/2 hours in total. Tumor samples were needed before starting the treatment.

• Tues 3rd Nov, virus treatment day 1.  Arrive at 8am and expect to stay until around 5pm.  So here's what happened....the virus was injected by IV into my arm.  4 hours later the side effects started, as expected. I had chills, oh so cold and was shaking quite violently.  My heart rate was very high.  The nurses kept piling warm blankets on me and giving me medications to help offset these effects.  This went on longer that expected and I didn't leave the hospital til later in the evening.  My poor husband go the job of playing nurse as we were to stay in Ottawa that night so we would be close to the hospital if anything went wrong.  I admit I did not feel well at all.  It was like having the worst flu ever.

• Wed 4th Nov, this day we were supposed to just hang out in Ottawa (originally my thought was we might do some shopping, ha!) but I felt rough so we returned to the hospital.  My head hurt really badly.  They put me in bed, with more warm blankets and pretty strong pain medication was needed but by 5pm it was over and I just felt tired.  To the Rotel for another night, with Mike again playing nurse. 

• Thurs 5 Nov, biopsy #2 will be done in the ultrasound department. Expect to stay with us for 4 to 4 1/2 hours in total.  These tumor samples will determine if the Maraba virus reached my tumor.

• Fri 6 Nov, virus treatment day. Expect to stay until around 5pm.  This treatment went much easier and we left at 5pm to go home.  

• Tues 10 Nov, Day 8 blood test in Pharmacology Ottawa

• Tues 17 Nov, Day 15 blood test in Pharmacology Ottawa

• Tues 01 Dec, Day 29 blood test in Pharmacology Ottawa

• Tues 15 Dec, Day 43 blood test in Pharmacology Ottawa

• Mon 21 Dec, Day 49 CT scan - to determine effectiveness of treatment.

Unfortunately this treatment did not have any positive effect on my tumors.  The doctor was kind and emailed me as the day of my appointment there was an ice storm.  His words were, "I did the measurements for the 2 target tumors.  The cancer is 19.8% bigger which is technically stable disease.  20% would make it “progression”.  Overall  looking at the other spots as well, my impression is stable to minor growth.   I sorry this didn’t work better for you."

What did happen is I tried something, I met some amazing doctors and nurses and I contributed to research. 
All things I feel good about.

I feel quite well at present and plan to spend some time now simply enjoying life; living in the goodness of it all and feeling gratitude for all I am blessed with.  

much love, Teresa