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update: disease progression

taraHK
Posts: 1961
Joined: Aug 2003

Thanks again to Maureen for 'checking up' on me and to other for kind words. 

My situation is not great -- last few scans have shown disease progression -- and I am running out of options for treatment. I will be having a biopsy tomorrow to harvest some malignant tissue and test whether I might be a good candidate for Temozolomide (TMZ). This is a drug which has been used for many years for brain cancer but is recently being trialled -- with some success (but v. small sample sizes) with "3rd line" colorectal cancer patients. That's me: 3rd line -- when all the traditional chemo treatments have already been tried. Would be very interested to hear if anyone else has tried or heard much about this drug.

One thing I love about this board is all the positive thoughts and wishes. But, sometimes "keep fighting" or "don't give up" are not really appropriate. I have not given up -- but I also feel I am at a different section of my journey. I am turning my attention to matters concerning death and dying -- and living the later part of one's life with fun and joy -- and how to leave with grace and dignity (and minimum pain!). I'm actually feeling pretty great these days: still walking (more slowly!), going out with friends (but often the first to leave), shopping (one hour max), and travelling (no long distance trips). I've just recently gone on sick leave -- not an easy decision for me -- but I want to have more time to do the things I want to do rather than have to do. I'm certainly not at death's door yet -- but I'm starting to prepare. I've read a couple of books: On Death and Dying (old, classic) and also Dying Well by Ira Byock (especially on hospice), which I thought was very good. I'd appreciate it if anyone has any other books to recommend. I'm seeing a therapist, which I'm finding very helpful.

I'm on quite a lot of pain meds -- for bone mets. But, so far they haven't made me too dopey during the day. I'm still able to drive my car, which is good (it's going to be hard when I have to give that up. But, I live in a place with good public transport including cheap taxis so not too terrible).

I have no regrets -- I was diagnosed Stage III rectal cancer about 10.5 years ago -- when Stage III meant 5% chance of surviving 5 years. So I feel I've beat the odds many times over! And I've enjoyed every second of it. I know I write about my sons a lot -- 10 and 12 when I was diagnosed and 20 and 22 now. They have been my beacon and made it all worthwhile -- My eldest graduates college this summer and I hope to make it there -- that is my beacon at the moment.

Tara

 

 

jen2012
Posts: 1255
Joined: Aug 2012

Tara..sorry you have progression....but happy you are living it up and enjoying life. Peace to you...i will keep you in my prayers and best thoughts!

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I really appreciate your realilistc view of where you are at with this crazy cancer. I know that there is a time to really start planning for the end. I keep postponing facing it but I know I shouldn't. I think it's too hard on my family if I bring it up. I have not heard of TMZ butI please keep me informed if you try it. Pray you find something to help you.  Jeff

Trubrit's picture
Trubrit
Posts: 1712
Joined: Jan 2013

I am sorry that your cancer has progressed. We all want to be the ones that survive.  And no matter how old our children get, we never think they are old enought to leave. My boys are 21 & 24, and I can't bare the thought of leaving them. 

It is wise to plan ahead for what is enevitable, death. Of course, that could still be a while down the road, but planning also give us a feeling of peace and of being prepared.

You sound like a down to earth, strong person, altough tiredness seems to be part of this journey. I will pray and send good thoughts your way. 

Thank you for your post. Its humbling.

- SUE -

AveriRN's picture
AveriRN
Posts: 61
Joined: Aug 2004

tara, 

I have anxiously awaited a post from you, checking everyday, multiple times a day to see if you had answered. As I sd, bck when I 1st joined CSN, I followed your post closely as you were a beacon for me! When I signed on this morning and saw your post subject, I was saddened, contemplated a few minutes wondering if I even wanted to read but then I did. I am sooooo glad that I did because even as you move into this next phase of your journey, not giving up, doing things you enjoy and at the same time facing the next step head on with such courage, YOU are STILL a beacon for me and are a shining example of inspiration, strength, courage, grace and hope. 

My thoughts and prayers are with you as you continue this journey. Enjoy that upcoming graduation! 

Sincerely,

Averi

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

Dear Tara

I logged in and your post was the first thing I saw.  The title made me sad...reading it made me even sadder, because I've always looked towards you in how you have fought your cancer and the longevity with which you have fought it with. 

I'm fond of the long-term fighting group...it's not easy making it over 10-years as you have....I'm closing in on the 9-year mark myself, Tara. 

When you got brain mets and overcame that, I was dumbfounded as you were the only one (at that time) to get past that.  My onc told me it wasn't even treatable...and I said I know a gal from HKong:)

And she's kickin' ass...

Brain mets is what I fear the most...and I've watched you closely to see how you did with it...and you have given me hope that if it should befall me, then perhaps I could extend further as well.  I know you were doing what you needed to do to survive...but still, Tara, the way you approached it and still did it...you just have my highest respect. 

It's one thing 'not to know'...and then to do...BUT, it's quite another 'to know'...and then still do...that's the big separator right there.

Anyway, watching you as an 'active cancer fighter' for 10-years has given me strength and courage to fight hard and try to stand on the same hallowed grounds as you have. I think if Tara can do it...I've just got to keep trying as well.  After the brain met deal, I thought she just can't be beat:)

The purity and clarity of your thoughts are very touching this morning...and it's always wonderful when we're invited in to share a persons thoughts and what is going on in their mind...all of us grow from such an encounter.

I just wanted to thank you for that...

Acceptance is a big part of the journey...it's one where I've tried to put myself there...but I find that you could only truly understand WHEN/IF one finds themselves at that point...until then, we rely on the thoughts of others as they face another aspect of their life story. 

Grace and Dignity is what you are handing things with...I could only hope that I would be able to emulate your example...the gift you are giving is priceless.

I'm wishing you whatever it is that you want - you've earned it...10.5x over!

Hugs!

-Craig

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Ah friend and fellow traveller....may peace be with you, now and always.

Across the miles,

Your friend,

Tommycat

PS: Wish I could hug you in person.

 

lesvanb's picture
lesvanb
Posts: 908
Joined: May 2008

I am so glad to have logged in this morning, and also sad to hear of your disease progression. I am always moved by your insights and the attention you give to living your life. That helps me go on too; now nearly 5 years at stage 4, right now NED, riding the long tail of the the right hand curve of the statistical tail (from Steven Jay Gould's "The Median is not the Message"). Lately what I have enjoyed reading is Ram Dass "Still Here", Steven Levine (he's written a number of books including "Who dies?" and "Healing into Life and Death"). Also, as a book that I can just open to read a passgae for contemplation I've been enjoying Mark Nepo's "The Book of Awakening". I'll post the passage I opened up to this morning here (it's a bit long :)

November 6 When We Squint

"And when we squint, we think we see like a tiger, while the truth like the sun spills everywhere but through our slits."

We have all heard the gritty advice that when things get tough, we need to dig in. This often translates to an aggressive, alert stance. We hone our focus and thinking, readying ourselves for anything. Unfortunately, when we steel ourselves for battle, our focus narrows and we can cut out as much as we need as what we fear.

I am not suggesting that we stumble through life without thought or focus. Rather, I'm offering a deeper sense of what it means to be alert. There is a telling difference between the sharp line of a laser ray and the wash of sunlight over a field, between the sharpness of a mind in crisis and the wash and warmth of the open heart. When we need it most, it is nearly impossible to see outrselves with compassion from the slit of a narrowed mind all tensed for battle.

A few months after the tumor vanished from my head, I bumped into a very bright friend in a restaurant who was tenacious in pursuing what I had done to defeat the tumor. I kept telling her of the enormous surrender that had overcome my life and that Ireally didn't know how to account for the miracle. She squinted terribly, as if blocking out the glare of the mystery, and insisted that I was evidence of what the miind could do over matter. As she squinted, I could feel her heart close. It was very sad. We've had little to say to each other since.

I have also found myself from time to time unable to stay in the feeling of a moment because my alertness in crisis, like a periscope shooting up, pulls me out of my heart, and the next thing I know, I am lost in the analysis of problem solving, of calibrating advantages and liabilities. Like my friend, when I squint, insisting solely on my own will to power me in the world, I close myself to the mystery, and I notice I become sad, having little to say to myself.

This has taught me that attention to detail can be mistaken for the act of caring. The truth is that being alert often requires us to widen our focus and to see with what the Sufis call "the heart's eye," for though surprise and crisis can make us squint like a tiger and show our claws, it is the effort to enlarge and stay open that helps us the most.

 

All the best to you Tara,

Leslie

 

 

annalexandria's picture
annalexandria
Posts: 2325
Joined: Oct 2011

for strength, and peace, and time for a little fun, as you walk this part of the path we all are on.  And a few hugs too~Ann Alexandria

smokeyjoe
Posts: 1428
Joined: Feb 2011

Much strength to you Tara.   I really don't know what to say  I've been following your posts and have been inspired by your strong will and determination.   I'm hoping this new treatment option is successful for you,  with minimal side effects.    

thingy45's picture
thingy45
Posts: 589
Joined: Apr 2011

Hi Tara,

 

So sad to hear about the progression. Strength you have we all know that, you have shared it with many of us. Hope is another thing, we all have  hope although we know better but we still keep on  hoping. Prayer, we do and use and people pray for us, all are helpful and make us feel better. But in the end.... it is you and you alone who fights the battle and keep on going, day after day.

Enjoy the life you have at the moment, laugh yourself silly until you cry, be moved by a sunset, a child, a loved one, a friend or an animal. The time you spend on earth does not matter, how you spend the time and with whom counts.

10.5 years of giving other people love, care and hope on this board  is enormous. Thank you, I wish for many more years if possible. You alone know when the time is up and you run out of options. You have shown us strength, given us hope and shown so much dignity. My love and prayers are with you on the path you are walking,

many hugs, Marjan

 

 

 

Chelsea71
Posts: 1170
Joined: Sep 2012

You're a classy individual. You've been and will continue to be a leader and role model to so many here. You represent hope and strength. Best of luck with the TMZ. I hope it works out for you.

Chelsea

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I've only been on here since June 2012, so I don't really know you, but your post should be an inspiration to us all on how to deal with bad news in this fight.  God bless you and your family, and I pray that the TMZ works for you.  I know someday that I will be at the same place you are right now, and hope I have the same courage as you.

Tedd

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

This is the first time I have read a post from you (fairly new). You are amazing!

Judy

Phil64's picture
Phil64
Posts: 520
Joined: Apr 2012

Tara,

 

Thank you for sharing your current challenges with us. You have my thoughts and hopes for peace and strength.

 

Sincerely,

Philip

ron50's picture
ron50
Posts: 1323
Joined: Nov 2001

I think watching your kids go from children to adults is something that was worth living for. It seems unfair to get past ten years and still be facing this. I may be fifteen years plus but it has seemed like thirty. Cancer has left me alone but everything else tries to kill me. I am suffering ectopic heartbeats now,about half my heartbeats are out of time. They are not sure why but it often leads to sudden death. Like you I accept what I have and how long I have had and it is not worth stressing about the inevitible. Enjoy what remains and wishing you peace for the future,Ron.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I sent you a private message. -- Cynthia

geotina's picture
geotina
Posts: 2071
Joined: Oct 2009

I wish I had the words to make your pain and sorrow go away.  You have faced your journey head on no matter what this disease threw at you.  Please don't let the fear of the unknown grip you and take over.  Be fearful yes, that is human, but don't let it consume you. 

For now I wish you peace, comfort and dignity as you face the challenges that lay ahead. 

Hugs - Tina

wolfen's picture
wolfen
Posts: 1214
Joined: Apr 2009

I just can't seem to find the words. You are not giving up, merely resting for the next leg of the journey. May your new beacon shine brightly and lead you to that graduation and beyond.

Luv,

Wolfen

tootsie1's picture
tootsie1
Posts: 5016
Joined: Feb 2008

Praying that you will reach that goal of being at the graduation! And I just want to say that I truly admire you for making it this far. You really have beaten the odds, no matter what happens after this.

 

*hugs*

Gail

janie1
Posts: 753
Joined: Apr 2011

Tara, i read your update over and over. You are so inspiring, kind, helpful, smart.
I hope there is a treatment or even a clinical dial that will give you many more years.
If that isn't the case, you seem to have all bases covered, and that must feel satisfying and peaceful.
Please check-in when you can, enjoy your plans and activities to the fullest.

YoVita's picture
YoVita
Posts: 566
Joined: Mar 2010

for your update and your many years of sharing your story with us.  You sound very grounded.  Good luck with the TMZ.  Best wishes for reaching your next beacon.  

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

I admire your grace and courage as you deal with this. You have been such a trouper. I hope this TMZ will be an option for you. You are amazing and it is good to hear from you. You sound good. I'm sorry about the progression and wish things could be different for you. Thinking of you.

Sandy

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

is book i could not put down.

my prayers.

hugs,

pete

taraHK
Posts: 1961
Joined: Aug 2003

Thank you for the many, many warm comments and words of thanks. Special thanks to LesvanB for the book recommendations (and advice on not squinting!) and to Pete lost-at-sea too for book recommendation.

They weren't able to do the biopsy (elusive little sucker!). I'm going to go ahead with the drug anyway...Will let you know how it goes. 

Meanwhile, making plans to go to Hawaii for Easter holiday!!

steved
Posts: 836
Joined: Apr 2004

Thank you for taking the time to update us all. I agree about your sentiments on 'keeping on fighting' and admire your robust and healthy thoughts about your own sitUation. I have always thought that the battle for acceptance about our plights is one of the hardest but seems to be something you have won. Adapting to having cancer and being incurable is a huge challenge and one I can identify with having been there and being given a timeframe. Accepting one is dying is fighting and winning that battle and certainly isn't giving up. 

Letting go of work is a huge step too but sounds well timed as you move to focus on the quality of the time you have and not the quantity. Having children as we do helps focus your thoughts on what is important in this world and they will remember this time you spend with them. 

I continue to hope for a good response to your new treatment but more than that I hope you continue to keep strong within yourself and eNjoy every day. As another approaching ten years of this illness I know we havetruly won this battle no matter what the final outcome is.

With all respect,

Steve

Sonia32's picture
Sonia32
Posts: 1069
Joined: Mar 2009

I know we do not talk but i have always followed you since i joined in 2009. You were and still are an inspiration to me and others. Sending you prayers and hugs

Kathleen808's picture
Kathleen808
Posts: 2319
Joined: Jan 2009

Tara,

Your post shares the peace you are living in right now.  I love that your boys are now men and that your son will be graduating from college this summer.  My prayer is that you will make it to this beacon.  I'm praying for continued peace.

Aloha,

Kathleen

Moesimo's picture
Moesimo
Posts: 1075
Joined: Jul 2003

Tara,

You are my hero.  I dont post or check like I used too.   Sorry i missed this post. I have been on vacation. 

As you know,  we were diagnosed around the same time.  Yesterday was the 10th anniversary of my diagnosis. 

I am sorry that your disease is progressing.  You have been my hero through off of this.  I would not be where I am if it werent for you.  You helped me through some difficult days in the beginning.  You were always just ahead of me in your treatment. You will never know how thankful I am for all your rallying.

You have carried yourself with such grace and dignity even when you have been dealt such a difficult hand.  I am so happy that you have seen your boys turn into such fine young men.  You have yourself to thank for that.  You have offered such good advice on this board. 

I really dont know what to say.  I am thinking of you and know that you will be ok.  You are such a wonderful woman.

Continue to follow your beacon.  You have been my beacon and my shining star.

My thoughts are with you as you prepare for the next phase of your journey.

Sending hugs and love,

Your soul sister Maureen

 

 

renw's picture
renw
Posts: 282
Joined: Jan 2013

TAS-102 originally out of Japan is running trials currently.
Its another option for third line chemo. Regorafenib also a possibility.

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

thank you for the post. prayers for you

hugs

judy

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