As we come up on a year

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exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
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As we come up on a year

Postby exaussie » Mon May 07, 2018 6:55 pm

Hello fellow caretakers and all cancer warriors
It will be one year on Sunday that our precious daughter took her life. Her brother (age 26)died in 2014 of colon cancer when she was starting sophomore year in high school
She never really was able to move past this devastating event that took her only big brother. We have found that an adverse reaction to a asthma medication likely caused the trigger for her to not be able to stop the depression demons.
The reason I am writing this is because I wanted to re-iterate that cancer is a FAMILY disease. It affects all in the circle of families which are made up of all loved ones including friends. Please watch and spend time with young ones, care takers-take care of your self when you can-schedule take care of me days. Cancer patients, if you are depressed or anxious and you can't shake it, get help. My daughter who is 19 months older than her sister that passed has been in therapy since last july and has really gotten good tools to help with her ptsd and anxiety/depression.
Don't be embarassed or shamed that you feel you can't get help, it is not a weakness or lack of faith or whatever you thought that stops you from getting help.
You are all loved, needed and are a unique part of this world

Love
Mary
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

some808guy
Posts: 10
Joined: Thu Oct 01, 2015 2:38 am

Re: As we come up on a year

Postby some808guy » Mon May 07, 2018 8:11 pm

exaussie wrote:Hello fellow caretakers and all cancer warriors
It will be one year on Sunday that our precious daughter took her life. Her brother (age 26)died in 2014 of colon cancer when she was starting sophomore year in high school
She never really was able to move past this devastating event that took her only big brother. We have found that an adverse reaction to a asthma medication likely caused the trigger for her to not be able to stop the depression demons.
The reason I am writing this is because I wanted to re-iterate that cancer is a FAMILY disease. It affects all in the circle of families which are made up of all loved ones including friends. Please watch and spend time with young ones, care takers-take care of your self when you can-schedule take care of me days. Cancer patients, if you are depressed or anxious and you can't shake it, get help. My daughter who is 19 months older than her sister that passed has been in therapy since last july and has really gotten good tools to help with her ptsd and anxiety/depression.
Don't be embarassed or shamed that you feel you can't get help, it is not a weakness or lack of faith or whatever you thought that stops you from getting help.
You are all loved, needed and are a unique part of this world

Love
Mary



Thank you for this.

AppleTree
Posts: 224
Joined: Fri Mar 18, 2016 8:16 am

Re: As we come up on a year

Postby AppleTree » Mon May 07, 2018 11:25 pm

I am sorry for your losses. Thank you for this important post. My own son is 14. We tried different therapists and a light anti depressant. He hated both, so I let him stop. I knew I had to keep looking for ways to help him. He has found his happy spot with horses and enjoys Boy Scouts.

His dad survived a 6.6 pound tumor. Then a few years after that serious blood clots. Then I was diagnosed. Cancer has changed everything about our lives and I think he is so brave and strong. But he has higher scan anxiety than I do! I schedule extra horse time for him.

I just finished my 12th round of Folfox and currently am not working. There is another horse farm looking for volunteer groomers so I am going to check that out for him this week. He is going to need it...my sister just entered Hospice care for her cancer.

I guess what I am trying to say, different therapies work for different people. If one thing does not work, try another. I also really try to do my major resting during the school DAY so I am available for Time together after school. I have back up drivers in place who can drive him when I am too sick to drive (or taking meds that say not to drive!). I try to keep his schedule unaffected by my cancer. But let's face it...it affects us all.

With hugs.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

teachpdx
Posts: 612
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: As we come up on a year

Postby teachpdx » Wed May 09, 2018 9:48 pm

Thank you.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

stu
Posts: 849
Joined: Sat Aug 17, 2013 5:46 pm

Re: As we come up on a year

Postby stu » Thu May 10, 2018 1:37 am

Thank you Mary .I think of you often and take on board your advise . Despite my kids being at the upper end of teenage years I make sure I am still available to listen . Also for my nieces too .
My husband’s sister has had difficulty with her mental health and it has made me so aware that we all need backup.
Take care of yourself too and I am so pleased your other daughter is getting suppprt.
Much love ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

MissMolly
Posts: 560
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: As we come up on a year

Postby MissMolly » Thu May 10, 2018 12:49 pm

Exaussie:
You bring up an important point in describing cancer as affecting the entire family. I agree.

My brother was 16 years of age when he was diagnosed with a Grade IV glioblastoma multiforma (the same tumor type that was diagnosed in Senator John McCain). I was 12 years of age. The year was 1984. The many advances of CT scans, MRI imaging and complex understandings of cell mutations were yet to be discovered. My brother had an incomplete resection of the tumor, which was less a solid mass and more like a wispy sider’s web laced through his parietal-temporal lobe. Chemotherapy was not an option as there were no agents that could cross the protective blood-brain barrier. My brother was given a 3-4 month life span.

I internalized much of my brother’s harrowing experience. My parents included me in their discussions and decisions. It was overwhelming for me to process.

The experience left me with significant survivor’s guilt. I was the healthy sibling as my brother languished. I would have gladly traded places with him to take away his pain. I later expressed my internal turmoil as an eating disorder/anorexia. Restricting food helped me to numb my own pain.

My brother survived his grave diagnosis. He is a genuine miracle. He is alive today and lives a life with some residual neurological effects but overall a good life. It is surmised that his immune system identified and eradicated his brain tumor, a living example of the principle of today’s science surrounding immunotherapy.

My brother’s diagnosis had a profound effect on my life. The continual stress left its mark on my health.

Exaussie, my thoughts are with you on this painful anniversary. I appreciate your comments and opening of awareness of cancer’s outreaching effects on the family as a unit. Your care and love for each of your children is obvious and heartfelt. The love of a mother is like no other.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

DarknessEmbraced
Posts: 3128
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: As we come up on a year

Postby DarknessEmbraced » Wed May 16, 2018 9:44 am

I'm so very sorry for the loss of your son and daughter!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

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CRguy
Posts: 9620
Joined: Sun Feb 10, 2008 6:00 pm

Re: As we come up on a year

Postby CRguy » Wed May 16, 2018 11:19 am

exaussie,
Thank you for continuing to be part of this family and helping us remember what is important in life

Sending you
Love Peace and Harmony my friend.
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Lee
Posts: 5681
Joined: Sun Apr 16, 2006 4:09 pm

Re: As we come up on a year

Postby Lee » Wed May 16, 2018 3:02 pm

(((exaussie)))

Thinking of you during this most difficult time.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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