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Trying to enjoy the "luck" while we have it.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Cleaning up a random corner of my house this morning (that only happens once in a blue moon, I tell you), I ran across an old notebook.

Inside I found notes I had made back in 2007 concerning my oldest daughter's sleep habits. You might think I'm talking about a baby here, but no.

She was 15 at the time, and had basically stopped sleeping.  For months on end, she slept only a few hours each night.

As you might guess, no sleep for that long pretty much fries your brain.  She essentially went out of her mind.

She thought the spiders in our house were conspiring to kidnap her.

She thought dangerous creatures were living in the heating vents.

My notes say things like "Unable to leave house, day 4.  Too fearful".  and "Slept with me for a few hours.  Paranoid.  Sees shapes moving in the corners."

Those notes go on for a full year.  All the different meds we tried.  The different docs, most of whom were just horrible (you haven't seen medical incompetence until you delve into the world of adolescent psychiatry!).   Our efforts to find homeschooling options for her so she could keep up with her education (although when your kid thinks the spiders are out to get her, algebra really takes a backseat).

We finally got a diagnosis (bipolar disorder), some meds that worked, a decent doctor.

She's been healthy since 2008.  I got cancer in 2009.

After I had a good cry in the shower this morning (and after I recycled the sh*t out of that notebook), I spent some time thinking about how bad things were for my family for a while there.  And you know?  I just never saw that bad luck coming.  We were leading what I considered a charmed life.  My sister had died from cancer, but I thought I was untouchable.  I was so incredibly lucky for a long time, and I didn't really appreciate it.  I just thought it would go on that way forever.  And why not?  I'm a decent person, trying my best to lead a good life.  I deserved to be lucky, dadgummit!

Now, of course, I know better.  We each walk a long and winding road (to borrow a bit from The Beatles), and you can't see what's coming up around the next corner.  I wish I would have appreciated my good fortune when I had it, but I was pretty oblivious.  So I'm trying to be less oblivious now, pay attention and appreciate a little bit more.  Life isn't exactly easy right now, but I have to look for the little sparks of brightness wherever they might be.  The fact that all three of my kids are healthy for the moment should have me up and dancing with joy (even if it does make my joints hurt).

So how about you all?  Any bright sparks that help you to remember that we are "lucky", despite everything?

Lotsa' love~AA

manwithnoname
Posts: 404
Joined: Jun 2012

Once upon the time there was an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit. “Such bad luck,” they said sympathetically.

“Maybe,” the farmer replied.

The next morning the horse returned, bringing with it three other wild horses. “How wonderful,” the neighbors exclaimed you are lucky!

“Maybe,” replied the old man.

The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune, what bad luck they proclaimed.

“Maybe,” answered the farmer.

The day after, military officials came to the village to draft young men into the army. Seeing that the son’s leg was broken, they passed him by. The neighbors congratulated the farmer on how  lucky he was

“Maybe,” said the farmer.

and so on....

Sorry AA....Zen should be banned...

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I don't think you understand what "Zen" is, based on your comment.  Nor do I think you understand the point of this post.  The CSN Colorectal board isn't just for discussion of unusual therapies and treatment.  It's a place for people with COLON AND RECTAL CANCER and those who care for and about them to share their feelings, ideas, and concerns.  But you (who have no connection to crc in any way, shape, or form) are welcome to post a dissenting, if rather pointless, viewpoint.  AA

herdizziness's picture
herdizziness
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Joined: Apr 2010

I couldn't believe he would post such sour grapes on a lovely post, so disappointing to see that inserted in your post.

Winter Marie

annalexandria's picture
annalexandria
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Joined: Oct 2011

of course, he forgets (or just doesn't know) that a lot of people here actually care about Pete, and have had some really good interactions with him, long before TMWNN ever showed up.  It has been upsetting to see how Pete has changed over the last 6 months or so.  Personally, I hope Pete can hear what people were trying to tell him, and rejoin us with a slightly different approach.  Tony, on the other hand, would be better off communicating directly with Pete on his blog or via FB.  There's no reason whatsoever for him to be on this site.

herdizziness's picture
herdizziness
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And got my head handed to me on a plate so kept silent.  Apparently that just gave more encouragemet as more and more became silent too.  I'm glad others have spoke their minds, and even as Pete stepped off the deep end I still wrote him, not about cancer stuff, just things to have hopefully brightened his day ignoring the cancer side of our lives, I do hope Pete stays on, but tones down the insulting remarks.

Winter Marie

manwithnoname
Posts: 404
Joined: Jun 2012

head on a plate? and why? the last thing you have done is kept silent.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

I have to disagree with that about MWNN, Ann.   There are molecular and biological features to cancer that we can have in common, plus situational problems to CAM, that mean we often have common problems and solutions.     Finding an incisive technical discussion that pushes back the unknown, the erroneous and the   is quite difficult - certainly not with average doctors.    So I am glad MWNN is here, he surfaces new facets and sources that I find useful, where I have to "outlearn" my wife's mets.  And that is getting more difficult.   Btw, I lost a parent to colon cancer, way early, and I had polyps pulled out this morning, so I am pretty serious about this.   

herdizziness's picture
herdizziness
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Every single one of us here, caregiver or cancer patient are pretty d@mn serious about this, please don't feel alone in that.  Each one of us wants to live longer, I haven't met anyone that hasn't.

Winter Marie

tanstaafl's picture
tanstaafl
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The difference is someone wanting and doing in the face of uncertainty, doubt and even opposition, with limited time and resources. 

It is one thing to sign a charge card and an insurance form for some shake and bake medical procedure.  Wading through several thousand research papers and a myriad of abstracts to spend 100% self paid cash is something different.  

It is one thing to sign waivers for a doctor doing routine standard of care or even a phase II - III trial,  vs being one of the few, or perhaps the first, to do something really different, even pointedly against standard medical advice.  

MWNN was that rare member with a degree of motivation, research and experience that could extend cancer treatments into new options with an independent technical view most people simply do not have.  Each option is precious.

annalexandria's picture
annalexandria
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I let my emotions get the better of me yesterday and I've apologized to Tony for that.  AA

tanstaafl's picture
tanstaafl
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Joined: Oct 2010

Thanks.

manwithnoname
Posts: 404
Joined: Jun 2012

"There's no reason whatsoever for him to be on this site."

All I've done is tried to help folk here with things I found on my journey, at best it's not appreciated at worst I'm personally attacked.

Adios

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

What a nice way to tell someone to f$$$ off the board. Didn't you flame pete for the same? Tony is one of the most valuable members on this board colorectal or not. Shame you can't see it.

annalexandria's picture
annalexandria
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this is all already resolved.  Tony and I have talked via PM and sorted things out.  You can also read his "OK" post to get further clarification.  AA

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

brain cancer.  I understand he has an MRI coming up.  Wish the best for you all with the results. I bet that the fact that he is with you and your family is safe even though you are in a part of the world that is filled with strife  ... are some wonderful bright sparks in your life.

Best,

Cynthia

jen2012
Posts: 1607
Joined: Aug 2012

Good post Ann.   I have been finding it hard to find the positive lately...but I just saw an interview with Valerie Harper, who was given 3 months to live and she was so positive and sweet that I'm really trying.  She said she finds something positive in each day.

I guess our biggest ray of sunshine right now  is the baby - who is almost 18 mos old and such a funny little guy.   Tough guy too ...he's the perfect youngest child...the one that makes you say "yup, no more kids for us!"  I was making a sandwich today and had my back to him for a few minutes and turned around and he was sitting in the middle of the kitchen table holding a (empty) wine bottle.   He also has a fascination with daddy's keys and has hidden them .... in the trash can.  Another time I woke up in morning to about an inch of snow....looked in the driveway and saw the van - with both sliding doors wide open and snow covering the seats.  Apparently he got to the keys again.  He keeps us hopping and laughing though.   The other kids too - though they are challenging at times are great.  My daughter is very protective - heard me upset on the phone the other day while talking to the insurance company and was very concerned and made sure to step in to help with the baby while i worked things out.   The older boy - 13 - is just a good kid.  He is newly diagnosed with diabetes, he has such a positive attitude about things - says he knows it could be worse and has just jumped into learning about it and taking care of things. 

We are still a family and while life is overwhelming right now ....we are still here together.

annalexandria's picture
annalexandria
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I would never dream of having another child, but he does do a great job of distracting me from all the other stuff I have to worry about!  I'm so sorry to hear that your oldest has diabetes....it's funny (and not in a ha-ha sort of way) how some families seem to get more than their fair share of challenges.

Trubrit's picture
Trubrit
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The older boy - 13 - is just a good kid.  He is newly diagnosed with diabetes, he has such a positive attitude about things - says he knows it could be worse and has just jumped into learning about it and taking care of things. 

What a mature young man. I'm sure your struggle has helped him in his desire to konw all about his disease. Still, I'm sorry he has to take on this challenge at such a young age. 

My boys want to handle my challenge with humour. If they can make me laugh, they feel they are helping. Good lads, and yes, they do make me laugh. 

 

jen2012
Posts: 1607
Joined: Aug 2012

I'm glad you got a diagnosis and they could treat your daughter.  That sounds so scary and overwhelming. 

wawaju04976's picture
wawaju04976
Posts: 316
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My fiance was dx with stage 4 melanoma a week before I was dx with stage 4 colon cancer (mets to liver). After shock, depression, all the "wonderful" feelings that come with this dx, one thing we both decided...we were lucky that his two children and my two children are healthy and happy adults (knock on wood). As we said, WE would rather be going thru this than having one of THEM have to go thru this!!!

Judy

annalexandria's picture
annalexandria
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As bad as it is to have cancer, it would be worse to have to face a child going through this.  A friend of mine lost her 17 year old daughter last year to a lymphoma...it was just horrible.  I keep hoping that my illness will be my family's "allotment" and nobody else will have to ever get sick, but I don't think things work that way, unfortunately!

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

My fiance was dx with stage 4 melanoma a week before I was dx with stage 4 colon cancer (mets to liver). After shock, depression, all the "wonderful" feelings that come with this dx, one thing we both decided...we were lucky that his two children and my two children are healthy and happy adults (knock on wood). As we said, WE would rather be going thru this than having one of THEM have to go thru this!!!

Judy

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I swear I feel lucky I found out I had cancer before it was really,  really too late, and then when my heart decided to fail me and it was the lower left widow maker artery and I'm still here, I felt lucky.

so yes, sometimes luck is with you and you feel it more so when your life was "normal" then something happens to change it.

so glad your daughter is doing well, I can imagine the heartbreak you must have gone through!

Winter Marie

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

when things are going smoothly it's sometimes difficult to appreciate it.  Which is weird to me...but looking back, I can see that's what I did.  Trying not to make that same mistake now...

Trubrit's picture
Trubrit
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Joined: Jan 2013

My word! You certainly have plenty on your plate. 

I am glad that your daughter has been diagnosed, and I pray the meds will keep her stable. And your son with diabetes and handling it so well. Then your struggles, too many. 

You are all in my prayers.

As for luck, I am totally lucky to have a wonderful husband, two wonderful boys, many wonderful friends, and a great church community who have rallied around me. Then I'm in Wal-Mart and start crying, and one of the associates gives me a hug.  Then I find this message board and find so much love and support. 

Oh yes! I am truly lucky (Blessed) and appreciate everything and everyone. 

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

daughter.  I can relate as our adult son has special needs. But even with the all the struggles, yes, there are "little sparks of brightness" ...

last night when I dragged the trash bin through the snow (yes, it snowed yesterday in Michigan) to the roadside I looked up at a sky that was dark, clear, with stars shining like little diamonds ... last night my husband slept almost through the night peacefully ... my mother is getting ready to celebrate her 93rd birthday this weekend and we still talk daily ... our puppy is almost housebroken ... our son is stable right now ... some daffodils are peeking up out of the ground ... my husband's brain tumor radiation procedure is behind us ... we recently reached out to friends when we were really in need and they responded ...

thank you for bringing up this topic and helping me focus on some of these positive thoughts.

Best,

Cynthia

 

annalexandria's picture
annalexandria
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and really sick, I was so down about things that I made a "gratitude" list that I stuck on my fridge.  It had some pretty dumb stuff on it (like "the colors of my walls"...because I was spending so much time looking at them!), but it helped me to see that list and be reminded there were still some things in my life that I should be happy about.  Your little list reminds me of that!  And I have some flowers popping up too...signs that spring is coming are much welcome.  Can't believe you guys got snow!

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steveandnat
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The bright points that I have been able to attend,see with my own eyes and looking for the next bright point. I was dx stage 4 June 2009 and that october I walked my daughter down the aisle. In June 2010 I was here to attend my sons wedding. In 2011 I was here to see the joy of my daughter and her husbands pregnancy. At the one of the brightest things wgrate birth of my first grandbaby! The joy over the past year to see the baby's growth. I fight for these wonderful events and so many other bright stars during this cancer journey. Life is to precious and I pray your journey has many more bright spots.  Jeff

annalexandria's picture
annalexandria
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I'm really glad that you have been able to experience the birth of your grandchild.  There's nothing quite like watching that next generation getting started!

AnnLouise's picture
AnnLouise
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Ann, thank you for your post and sharing...a reminder to emphasize the bright sparks in our lives is so important. A loving husband, five children,two daughter-in-laws and three precious grandchildren are certainly my brights sparks. I actually got to dance with my son at his wedding...I am blessed! I got to see two children graduate from college....how proud! My High School junior won the football state championship, and two boys got new teaching jobs....English and English dept. head. All things I wasn't sure I would be able to share with them. My granddaughter is 18 months old and I have been able to see her walk and talk...How adorable! And the grandsons are my precious boys!  Thing are not always good as my cancer has recently progressed but we are taking each step as a family.  Our daffodils are also coming up through the snow.....can't wait to plant flowers!   ~Ann

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

I feel very lucky. In December, after getting the stage 4 diagnosis, I felt defeated. Since then I feel better than I have in years (having my 8th tx of Folfox this coming Friday). My son just got engaged last weekend, and I intend to be at his wedding next summer (and feeling as good as I do right now). Again, I am thankful my children are healthy, and I can make sure they know to get screened earlier than age 50 for colon cancer. Yes, it's the little things...I look at things very differently now.

Judy

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

I feel very lucky. In December, after getting the stage 4 diagnosis, I felt defeated. Since then I feel better than I have in years (having my 8th tx of Folfox this coming Friday). My son just got engaged last weekend, and I intend to be at his wedding next summer (and feeling as good as I do right now). Again, I am thankful my children are healthy, and I can make sure they know to get screened earlier than age 50 for colon cancer. Yes, it's the little things...I look at things very differently now.

Judy

steved
Posts: 835
Joined: Apr 2004

Thanks for the post and personal story. I can really identify with the fluctuating thoughts we have IN different phases of this journey about how we see our luck and lives. Have done the same move from the 'I'm so unlucky, why me?' thinking to the 'I'm so lucky just to be alive' thinking and can still oscillate between the two on a daily basis. In truth the prior is inevitable but ultimately unhelpful and the latter is a sign of the adaptation in our thinking we need to do to survive and accept this illness.
One thing my family has added to its weekly ritual is a Sunday night 'tablecloth dinner' where we eat together at a set table and start by saying our 'thankfuls' of things from the week past we are grateful for. The kids (5 and 8) really appreciate this and do help us remember that even in the darkest moments we have stuff to be thankful for.

Steve

Maxiecat's picture
Maxiecat
Posts: 544
Joined: Jul 2012

Some of my recent bright spots include are that both kids are really buckling down and helping out.   I put up a chore chart...simple things like feed the cat, was dishes, help me with the laundry, practice your cello, etc. They really have taken responsibility for getting their jobs done every day and it really has helped me manage some of the day to day things that need to be done ion the house so that I can rest when I need to.  Both of them did very well on their report cards this term...i have friends that have arguments with their kids over getting homework done or studying - my kids have been getting it done without any issues.  My husband is doing well at work...he's off to Germany tonight for business this week....I wish I could have gone with him...Paris is only 4 hours away from where he will be.  I am so happy for him that he is finally getting to do something he has always wanted to do...travel.   We talked about it and plan to start saving for a trip for the 2 of us maybe next year....I just need to concentrate on getting some medical bills paid off first.  As for me, I am finally feeling a little better... I am keeping myself busy with project plansaround the house and my needlework ... It feels great to finally finish a few things.

Alex

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

I feel lucky that I'm still here 3 years out to see my son's life turn around in a positive way.  In the three years, he's gone from living with his mother, being my major caretaker as my husband lives out of state, no-future job, no love interest .... to moving out to his own place, great job with great future, and a lovely fiancee.  Wedding is in September in Boulder, Colorado.  I am so very lucky to have survived this long to see these positive changes in my only child.  

Best, Vita

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Thank you for your post Ann.  I know I am lucky because I had flex card money left in my account to make me get my colonsocopy in November.  If I didn't, no telling how worse off I would be.  I am a loving family, friends who care about me and thank God my cancer was caught when it was. 

wolfen's picture
wolfen
Posts: 1320
Joined: Apr 2009

Love your positive post, Ann.

As for bright sparks, around my house I'd be looking for where the fire is burning. LOL  Seriously though, as life has many ups and downs, all you can do is to thrive on the ups and manage to get through the downs. I did like Tony's post. It just shows that for every positive, there is a negative. Is that Zen? I'm afraid I have never looked to see what it is.

I'm not grateful that JBG has cancer, but I'm grateful that her spleenectomy was successful and has given her the ability to add ammunition for the battle. I'm not grateful that my hubby has cancer and was bleeding out around his feeding tube yesterday. I am grateful for the paramedics who arrived and got him to the hospital. I'm not grateful for all of us having to endure the illness and stress. I am grateful that we have the tenacity to fight, absorb the stress and continue on. So, I guess it's all relative.

Is it luck? Is it Karma? Is it now, or has it always been completely out of our hands?

Luv,

Wolfen

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

the house burning down thing.  I've definitely had times where that would have been the case.  I think I needed to have titled this something else, as my use of the word "luck" kind of got everything started.  Actually used those parantheses on purpose, as I wasn't really talking about the concept of luck at all, rather the concept of appreciation for the times when things are going well.  Sigh...that's online communication for ya!  AA

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