In the final days

Today it is not my mom, Teresa Bell writing but rather is it her daughter Kaitlyn. With all that has happened over the past few weeks, I knew that eventually somebody would have to write a post. I have been trying to figure out the best time to write the post and how to properly word it. That is when I realized that as I sit awake in a quiet house contemplating and reflecting over a coffee that this is exactly when my mom would have pulled out her computer and started typing.

My father was awake at 4am, knocking on my brothers door for his early swim. On any other Tuesday or Thursday I would naturally wake up from the knocking but continue sleeping after they leave the house. Today was different.

Today I had to wake up and go into my parents room. I tried to sleep but it was too difficult. So rather I sit in our kitchen where I can listen closely in case my mom calls out. My mom has a very small voice now.

A few weeks ago my mother gave up treatment, the only other chemo on the list would have been extremely aggressive on her already weak body and the chance of results was so minimal. As a family we agreed that this was the end of my moms fighting. It seems like the minute she agreed that her body can give up now, it did. The tumors grew rapidly and she lost a lot of weight. My mother looked sick with cancer for the first time in all of her 14 years of fighting.

Things progressed much more rapidly than anyone guessed, it just goes to show that my moms will power was stronger than the cancer. The minute she said okay, we got to see what the cancer was really made of. But up until now she said no, and I do believe that if she wanted to keep fighting she could still be with us. She is just that strong.

At this point, my mom is still living with us here on earth. But her journey here is ending rapidly and her journey with God is just beginning. My mom has always had God in her heart, and has stayed true to her faith. She has never doubted Gods plan for her, even with all of the hardships he has given our family.

In the past couple of weeks I have been home, studying for exams in between nurses visits. I have the choice to defer them, but I honestly think my mother would have told me to finish them no matter what. The thought that my schooling would be affected by her would be more hurtful to her than any part of the dying process. So I push through for this reason.

Throughout this process, there are many things that I am thankful for.
- that the process is happening quickly, my mother would not want to live like this for long
- that my family is as close as we are
- that my father has more compassion in his heart than anyone I have ever met
- and finally, that my mother was the most amazing woman I have ever known

If you haven't noticed, in a lot of the blog I talk about my mom in past tense. This is because we try to keep her 'comfortable' meaning that most of the time she is not my mom anymore. And I am glad, because my mom would not want me to see her like this. Nor would she want me taking care of her. So I try to separate my mom from the mom laying in the room next to me. Its easier that way, and I hope that the memories from these past couple of weeks leave me so that I can remember my mom the way she would want to be remembered.

For all those that read my moms blog, I thank you. She has had such an amazing journey, and the impact that she has had on people... it is incredible. I may keep posting on the blog from time to time, I may not want to look at it ever again. But I know I will for sure leave it up for anyone in the future who is looking to relate to someone who has Sarcoma cancer. Even though my moms story doesn't end with a miraculous cure, take comfort that my mom lived a full life. She was just crazy enough to live it in a shorter time span than most.

If you are one of those people that would like to contact my mom, or stop by the house. I ask that you please don't. We have progressed too rapidly for visitors and would like to keep the house a quiet place. When the time has come that we are ready to celebrate my mothers life, I will let you know how we would like you to do so. For now I ask that you put her name in your prayers, and that you live with the fierce grace that my mother has.

These are just a few pictures I found in my mothers computer that made me smile. :)

Why is it important to me? and will you come?

Why is this so important to me? This is the question I have asked myself many times recently. I ask it in regards to our Step and Fetch Sarcoma event.
Its just around the corner, next Sunday Oct 2.

Why do I want to do it?...because like so many things in my life, it just not just affect me.  In fact, by wanting to have the Step and Fetch happen, I ask a lot of people to help me.  I ask others to spend their time, their energy and their money to help me do this.  It's a lot I ask of others.  And I am asking you to come out and join us, to be a part of this day.  Please, please consider coming out Sunday Oct 2, to walk with us.  If you possibly can, please be a part of this because it matters to me more than words can say - that YOU come. So if it matters to me this much, I feel I need to ask myself WHY and hear in all sincerity the answer.  Is it reasonable or fair to ask for all this of others...definitely not.  But I do it anyway, and have been for the past 7 years now.  So I ask myself, why?

I should stop here and explain Step and Fetch just a bit.  This is an event, we have been doing it since 2009 and it began as a wee conversation at JB Print one day.  December 2008 was when I first learned my particular Sarcoma case of Sarcoma cancer was going to be incurable, and I had fought one of my biggest medical battles when told there was not treatment for me and then going to Mexico and paying out of pocket for chemotherapy and radiation. It was at this point in time it fully hit me just how little I knew about my cancer, how very dangerous it was, I was the only one I knew with Sarcoma and it felt pretty hopeless.  When I started trying to learn more about my disease I also started to connect with others, hear their stories.  I was no longer alone and I was learning a lot about what this cancer called Sarcoma does in the lives of others.  I felt compelled to do something, to try to make a difference.

So one day I uttered these words while sitting in the JB Print office...."I wish I could do something to bring more awareness and understanding to the community about Sarcoma".  And the JB Print gang...they said "well, why don't we?" and my family said "we will help".  Before we knew it, a printing company, along with a small band of family and friends, was thinking up a way to educate participants while having fun and being in our community.  Step and Fetch was born.

THE STORIES...

“Facts bring us to knowledge, but stories lead to wisdom.“  Dr. Rachel Naomi Remen

In 2008, when I was desperately seeking to understand the disease within me and searching for treatment options to prolong my life, I started finding others who also had Sarcoma touch their lives.  It began online; websites and chat groups.
I found real people who had walked the same path and learning how they felt, what they did,  where they went for treatment, how they talked to their kids, what their experience was.  Some of the best websites for information were done by people who were honoring a lost loved one.  I found a community, a sarcoma cancer community and it made all the difference in my world.

Walk starting at Quinte West City Hall

The Step and Fetch brings people together and gives them an opportunity to connect with each other. Cancer patients and non-cancer patients, families of cancer patients, health care professionals...we all can benefit from hearing each others stories.  Gathering people together is very powerful, and that is why Step and Fetch is designed to encourage interaction, through the story boards, shared hot meal at the end of the walk and the guest speakers who bravely step up to the mic.  Simply the act of doing the walk together is so powerful...it's the most amazing feeling.

THE FACT CARDS...
When the topic of cancer comes up Sarcoma is not a word many people have heard of.  One of our main goals with Step and Fetch was to change that...one small step at a time.  Awareness and better understanding of Sarcoma is important for a couple of reasons.  The first is many patients are not diagnosed early, simply because the symptoms are overlooked or thought to something else for too long.  There is power in knowledge and the Fact Cards are way to educate while having a good time (collecting cards and winning prizes). There is so much to be done in research for better detection, treatment and prevention of Sarcoma cancer and to be honest, it gets very little research funding.  The general public needs to know how devastating this disease is, especially in the lives of children and young adults, so they will push for better funding through both public fundraising and government supplied funds.  The medical profession also needs to be more aware of Sarcomas, to ensure early detection and referral of patients to Sarcoma centers.

Dr. Faulkson, a Sarcoma Radiation Specialist

and most important, COMING TOGETHER...to celebrate those living with and beyond their disease, to remember those gone from us because of the disease, to build strength through a grass roots community effort.  Together we can and will make a difference.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.  Margaret Mead

I may have skirted around the question I asked myself...why is this so important...to me personally? 

Why do I ask so many to help, to give their time, efforts and dollars?  I often feel I ask too much and yet, every year, I do it again.  And the help is given with smiles and a willingness that goes deep. At the heart of it, it's because I want to help others.  It's just simply that.  It is with much, much gratitude that I thank everyone who helps me to do this.  

Every person counts, every person makes a difference...so please, consider joining me and being a part of this amazing thing we call Step and Fetch.  I hope to see you Sunday Oct 2, 2016. 

Details...you can learn more or register at www.cancer.ca/stepand fetch and see lots of pictures on our facebook page Sarcoma Steps or pop into JB and of course, I always love to hear from you.

With much love, hope and faith,

Teresa

If not us, who? If not now, when?
Kennedy, John F.

See you Oct 2nd

Eribulin, Anxiety and the Bucket List

Do I ever write a blog post in the evening?  Once again, it's 6;30am and I am sitting feeling the morning air coming through the window as I open my keyboard and feel ready to send the thoughts in my head and feelings in my heart down through my fingertips to the keyboard.

This morning is Day 8 of my first cycle of Eribulin.  It's a brand new chemo, freshly approved in clinical trail and by the FDA for Sarcoma and available to me after a lot of advocating on my behalf by doctors for a compassionate grant from the drug maker.  Eribulin is not a new type of treatment, it's just another type of chemo.  Our hope is that it will slow, stop or even shrink the tumor growth.  Since March my tumors have taken on a whole new pace of growth, rapid and unpleasant to be honest.  I pray my body can withstand the treatment.  My biggest concern is my Hemoglobin count (red blood cell) which has been struggling for months now.  My doctors of course have many concerns, infection been high on their list. We will just have to take it one week at a time.  There is definitely possibility that my body handles it just fine and the tumors get the sh*t kicked out of them for a while.  I am grateful to be starting treatment; we have been working towards this for months now and setbacks kept happening, and there is potential (that beautiful thing called hope) for relief from tumor growth.

Being honest with you, a new struggle is anxiety.  Naturally, we all have moments of anxiety, for good and bad reasons.  But the last two months I have felt it a lot more.  The tension in my rib cage, the sweating, racing heart and feeling of being overwhelmed and incapable.  I wake up and realize I must have been dreaming because I am all tense.  Sometimes I wake up and remember what I was dreaming and it's not nice.  I am working on ways to counteract this anxiety - reading books about relaxation techniques, listening to music, reaching out to talk to family and friends.  Yesterday I met with a Social Worker and that is going to be helpful going forward too.  Talking with the social worker yesterday, one point I realized is that over the last two months I have had to be extra vigilant monitoring my body for changes that may indicate reasons to seek medical attention.  This was for good reason, there have been quite a few hurdles with kidney distress, edema and fevers.  However this has also trained me to be super aware of my body, any changes in feelings and many of those changes resulted in going to emergency and hospital admittance.  So now I need to undo a bit of that.  Of course, being aware of my body is still very important and I must continue that.  But I also need to teach myself and practice the art of being aware, mindful, present and ...the big and ... being able to ground myself, relax, and assess the situation with better perspective.  Breath, I must remember to first breath :)  This is not to cause you to panic for me or start sending me tips on relaxation techniques and articles about essential oils and herbal teas :)  I am sharing these feelings because I bet I am not the only one.  Last year I would have told you anxiety never crept up on me, but right now it's a different story.  Just goes to prove nothing stays the same.

The bucket list.  It's talked about a lot in life, especially when you are faced with a crisis or situation that you feel threatened in.  A movie made it famous.  I have always had a bucket list...it has gone by different names through the years...goal list, dreams, thoughts.  It has been written in journals, on scraps of paper, kept private, posted by my bed.  I think it's a wonderful thing and I hope everyone has one of some sort.  People ask me sometimes, even doctors will ask...do you have anything on your bucket list?  Yes, I do.  There is one big item on my bucket list.  It's not a trip, it's not a destination and it's not something money alone can buy.  I am so blessed, so grateful, so appreciative and I feel so loved because my bucket list item is coming to fruition because many people are helping to make it happen.  This grand item is a barn...yes, a physical structure...a barn right there beside our house.  A barn I helped plan.  A barn that already is my happy place.  A barn where I have my horse, a few chickens and some sheep.  The barn has always been my happy place - as a child, as an adult.  The beautiful thing that I see happening right before my eyes this summer is the building of this barn, and it keeps my dreams alive.  I can't build a barn on my own, in fact, I am of very little help in the process.  But no one points that out.  My family just keeps working away at it, and I know it's all done in love.  Much, much love - how did I ever become so blessed?  And it's everyone...some are lifting boards and pounding nails, others go to pick up building supplies, or bring us a snack while we are working, sweep the floor or simply stop by to check on progress.  No one has every said "this is silly, all this work and money on a barn, and really Teresa, how much are you going to use it?".  Nope, they all just keep on building the barn and building my dream.  I wish I could tell you, and the words fail me, just how loved and blessed I feel.  I am one of the luckiest people in the world.  God loves me.  My family loves and supports me in more ways than I can count.  Friends stick with us, check in, come over, lend a hand, send a word or card of support.  Life today is not a life I ever pictured for myself.  Life today is very good, and now I am going to go out to the barn :)

With much love, hope and gratitude,
Teresa

Stopping chemo, kidney distress and nephrostomy tubes

5:30am Tuesday Aug 9, I sit drinking a glass of milk and my fingers are poised over my keyboard.  I am ready to share, to reach out.  It's been a long time coming, this moment of openness.  A lot has changed, a lot has happened.  For starters I am drinking milk instead of coffee :) My sister reminded me yesterday of the importance of writing, any kind of writing, of how good it is for the soul.  I have always loved writing in this blog, feeling as if I am sitting with a good friend, a friend who is listening with an open mind and heart, where I am safe to just let the words flow out.

The events of the last 3 months brought some firsts, this biggest being that for the first time I felt maybe this was the moment I needed to give up fighting, and let this disease run its final leg.  Doctors are honest, for which I am grateful, and this time they were not promising this would all get better. They were saying we would try.  But no promises of success could be given.  I suppose all of life is like that really - no sure odds of anything.  Aside from the physical challenges lately, I have also tread a path of much doubt, and at times much sadness and anger.  I am blessed though as my family stuck tight, supporting me but also having to tread their own paths in this cancer journey...that's it right there, we all have our own path but they are all in the same forest.  They never forced, they just walked beside me.  I now feel the hope burning brighter in me, a gratitude for the moment I am in right now, the peace of knowing who and what I can be now is enough.  There is much love, much grace and that makes it all okay.

I guess I should try to start at the beginning....this is going to be a long blog....get comfortable :)

I left off at trying a new course of chemo combo of Gemcitabine and Docetaxel.  After 2 cycles we did a CT scan and it showed continued progression of disease.  AKA not working, no sense taking it.  So we stopped.  Next step was to continue to fight for approval to use a newly FDA approved drug called Eribulin (also called Haloven) http://www.medscape.com/viewarticle/846261.  This drug is approved for protocol (meaning the hospital will pay for it) but only for breast cancer and not yet for Sarcoma, even though it has the FDA approval.  Applications were made to the drug maker Eisai for a compassionate use grant.  I also applied to Manulife, our work place benefits company, but they were awful - taking 6 weeks to even reply to the request and then stating no they would not cover the drug cost as it was considered "experimental" even though it has been through the required clinical trails, is FDA approved and being used already in countries such as the UK and USA (just a small side rant there).

While my medical team was advocating for the compassionate grant, my body got into some other problems.  I started running fevers (about 38) in the afternoon and the day in July that I realized the house was 85 and I was lying in bed under a down comforter I made a call to my doctors most amazing, awesome secretary Cat and she immediately tracked down a doctor to share my concern with.  The word back was go to emergency.  We have learned there is no sense going to Belleville emergency, they will leave me waiting for a minimum 6 hours without even giving me fluids or pain medication, then I will see a doctor, maybe do a test, they consult Kingston and end up sending me there.  So straight to Kingston emergency Mike and I went, July 5.  At this time I had a fever, felt cold despite the heat and had a lot of back pain.  It was late evening when we arrived, and after a hour in the waiting room (which I thought was pretty fair) I was taken into emergency and a doctor actually followed me into the exam room.  They were excellent.  I was assessed right away, given pain medication for the back pain which honestly was as painful as labour back pain (had me rocking back and forth, doing that low throat moan I do when something really hurts) and made comfortable.  Tests were run, fluids given and everything settled down.  About midnight emerg team said I could go and I was honestly feeling better.  We had an appointment in Ottawa Hospital that day so we left emerg and went on our way, and this seemed all okay.  The trip to Ottawa was fine, although I did keep taking Tylenol 1's for the back pain.  When I got home that evening about 7pm a call came from a doctor in Kingston emerg - my blood culture tests were showing bacteria growth and infection was suspected.  I needed to return to emerg for IV antibiotics, as soon as possible please.  Brenda volunteered to take me and off we went, arriving about 10pm to Kingston emerg, July 6.  After a reasonable wait time we were taking into the emerg treatment area, I got a bed and Brenda got an uncomfortable chair which I am sad to say she spent the entire night in :(  IV antibiotics were started and my pain was brought under control.  The urology team was called to look into my case, a CT scan was done and it was determined my kidneys were swollen and showing signs of acute distress, especially the right kidney.  Tumors are pressing on the ureter, which drains the kidneys to the bladder, so my kidney was basically backing up with waste.  I was admitted to hospital with the intention to have a drain tube put into the kidney - this is called a nephrostomy tube https://en.wikipedia.org/wiki/Nephrostomy.  The procedure went well, I was nervous it would be painful (as the last drain tubes I had were) but it was not difficult (it was quick, and the team in Kingston x-ray were excellent).  I stayed in hospital 2 nights, receiving antibiotics and fluids. I felt ready to go and was discharged.  I was home for about 24 hours before the pain, chills and fever returned.  Once again, back down the road in the evening to Kingston emergency, this time with Mike and Tanner.  Diagnosis - the left kidney was now swollen and in distress.  Treatment - needs a drain, a nephrostomy tube.  Again, admitted to hospital, the procedure done and I returned home the next day.  At this point I was wore out.  I slept a lot, found it very hard to eat and really felt done in.  I was discharged as I was stable in all my stats and really they had done all they could for me.  It was now up to my body to recover to whatever capacity it could.

I spent the next 8 days in recovery mode at home, resting and trying to eat and drink lots of fluids.  But every afternoon I would develop a fever, and I generally did not feel well.  By the weekend, I was getting dizzy and short of breath just trying to walk from the bedroom to bathroom.  I really did not want to return to emerg, but instead waiting til Monday morning so I could talk to the oncology team at KGH.  I called in the morning and by afternoon had been advised to return to oncology for fluids.  I arrived about 4pm, July 18 and actually was weak enough to request a wheelchair instead of walking myself around the hospital.  I had severe low blood pressure and a high heart rate.  Conculsion - I was severely dehydrated showing acute kidney injury.  IV hydration was started immediately and brought relief within an hour.  I was admitted to hospital again and further tests were run to check for any further complications in my abdomen.  I was grateful for the thoroughness of the medical team.  And ultrasound revealed left renal vein thrombus (blood clot in kidney) for which I was started on blood thinners (so now I give myself a needle each evening).   My the next day I was up and walking, feeling stronger and went home July 20.

The next 2 weeks were tough, maybe the toughest I have been through yet I think.  I was not just low energy, I was completely depleted feeling.  I really just spent my time lying down, even holding my head up seemed to hard.  I now have 2 drain tubes in my back, which lead to bags that hold my urine - pretty classy I must say.  Remember I also have an ostomy bag at the front.  It was at this point I started to feel unsure I would get back to anything more than being a lump on the couch.  My family stuck by, remaining patient and compassionate, did everything needed around me and for me, and we let time take it's course.  Besides feeling 100% exhausted I struggled to eat, I think my body struggled to adjust to the tubes in my back, and even a short walk left me breathless and feeling as if I would simple collapse.  I recall now that I read once someone say that in some moments, all you can do is focus on taking the next breath.  I hope I did that.  I hope I held onto the moment I was in, but it's kind of a hazy time now in my mind.

I do have a vivid memory of something that happened in that recovery time though.  It was the weekend, and Paula and Derek came over to make it an afternoon of our family hanging out here at the house.  I was not even able to hold baby Isla - I simply laid on the couch.  But what I saw brought such joy to my heart.  I watched my kids - Paula, Derek, Kaitlyn and Tanner sit together at the kitchen table and spend hours playing games - laughing, chatting and loving each other.  And I watched my husband sit in the rocking chair, a granddaughter in each arm, just basking in the moment.  Oh, such joy in my heart!  It made me feel their lives, all the most important things to me, were in such a good place.  They are a closely connected family, with so much love present.  Joy, peace, happiness were all feelings I soaked in that afternoon.

With time can come healing, and this morning an hour has passed since I started writing and my household will wake up. I can honestly tell you I feel so much different.  I feel strength returning to my body, heart and mind.  Physically I see improvements.  I know I have more time still, that despite all the things going on inside my body I have more time here still.  I am future dreaming again, planning the time when I put my horse in our barn and care for him every day.  I cooked a meal for my family Sunday.  I did the laundry yesterday.  Sure, there are new limits but today I feel I can live well within them.

The drug company has given approval for the compassionate use of Eribulin, and as soon as I feel ready, the doctors are ready to give me treatment.  I feel the time when I say yes to that is approaching soon.  Yes, I am nervous, nervous how my body will react but I also feel it is something I can do.  My sister, who is the person who took the steps needed to get me started on this blog (my sister is the best at pushing me outside my comfort zone) is watching I stick with writing (I do love it and it's amazing therapy for me) I am sure I will be more on time with a blog to let you know how Eribulin goes for me.

I think of the people who read my blog, thing of you as comrades and friends, all of us sharing our journeys.  I appreciate you.  You touch me and lift me up, you help to give this cancer journey purpose and I am grateful.  Thank you for walking with me.

There is a song I just love right now, it inspires me to keep going.  It is Move by Toby Mac.
lyrics can be found at http://www.azlyrics.com/lyrics/tobymac/movekeepwalkin.html
you tube is at https://www.youtube.com/watch?v=MX1G71WK-FA
my favourite part is......

I know your heart been broke again 
I know your prayers ain’t been answered yet 
it ain’t over yet, ain’t over yet so 

Move, keep walkin’ soldier keep movin’ on 
Move, keep walkin’ until the mornin’ comes 
Move, keep walkin’ soldier keep movin’ on 
And lift your head, it ain’t over yet, ain’t over yet..

with much love and Gods grace,
Teresa

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 :)