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Joined: May 2012
Posts: 114
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: May 2012
Posts: 114
Hi All,

I have been on this site many times over the past 9 months, but never officially became a member until today.

My mother passed away of oral cancer on April 22nd. She was first diagnosed with breast cancer at age 39, when I was 12 years old. Thankfully it was caught early enough... chemo, radiation, and surgery cured her for over 25 years. In 2007 it came back stage IV, however due to being hormone receptor positive, she was able to live relatively symptom free for the past 5 years. In August of 2011, she was diagnosed with early stage squamous cell oral cancer when she found a small patch in her mouth. Within 3 weeks it had tripled in size. It was removed through treatment. Surgeons were able to remove all of it, but unfortunately it had already invaded her lymph nodes. After healing from surgery, which included a trach and reconstruction from a graft taken from her arm and leg, my mother started 6 weeks of oral radiation along with 6 treatments of cistplatin (chemo). As radiation ravaged her mouth, she was forced to take a few breaks. She didn't give up though and fought her way through to the end. She finished treatments in mid January. Her doctors said protocol was to wait 12 weeks for her post-treatment pet scan. 6 weeks short of her pet scan appointment she began to feel extreme pain in her side, followed by a tumor on her rib. All downill from there... an ultrasound, chest x-ray, ct scan, and biopsy all led to an ill fate. Her ct scan results were delivered on March 23. Hospice was started 2 weeks later. She passed away on April 22nd. I didn't leave her side for a month. Hardest ordeal of my life. Hoping some of you can help me find my way through this grief and adjusting to a life without her frown


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
Joined: Jan 2012
Posts: 42
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jan 2012
Posts: 42
Aimlee, deepest condolences for your loss, I can only imagine how empty you feel. There are many wonderful folks who can help you grieve. It takes a long time to recover, and the people here will help you as long as it takes.


Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Aimlee, I am terribly sorry to read your story of your mother. Losing a parent is so difficult, as is any immediate family member's loss. Wishing you can remember all the good times, the happier, healthier times you shared together to help ease your pain. May she now rest in peace, free from all the pain.

Welcome to you, thank you for joining OCF. There are many members who have been thru the loss of a close relative to oral cancer who understand what you endured. I have lost both of my parents many years ago. It is so difficult learning to go on without their presence. I know in time you too will find your way.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hi there and welcome - I too lost my mom years ago and miss her still. I totally understwnd - it sounds lik your mom was a fighter. She obviously loved you and your family very much. Sometimes there's no rhyme or reason to OC - it can be highly aggressive.. Hugs to To you particularly with all you've been through - we're here... wink I'm not sure how religious you are but I truly believ your mom is with you still watching over you. Take care!!! smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Aug 2005
Posts: 307
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Aug 2005
Posts: 307
Oh Aimee reading your post was so heartbreaking. I lost my Mom 12 years ago and I still think about her every day. After my Mom died I got some grief counseling and it really helped. For me the first year was the hardest. Sending you lots of hugs...we are all here for you. I believe what Cheryl said, your Mom is your guardian Angel now and will always watch over you.

Take care,

Shelley


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Aimlee, I'd saddened to read about your mom's passing. We're all here to help you in this very tough time. My thoughts are with you.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Sep 2009
Posts: 701
Likes: 1
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 701
Likes: 1
Aimlee,
I am so sorry to read about your Mom. I believe you were a great source of comfort to her as you were with her much of the time. Your gift of yourself, being with your Mom, is beautiful and humbling. There are many here, as you have already met some, who have lost loved ones, too. You are in compassionate company. Please come here often. The support we can offer will help you through this very sad time.


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
Joined: Jun 2009
Posts: 875
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jun 2009
Posts: 875
Hi Aimee: I'm so glad you became a member of this Forum. Please stay with us. Your Mom was an incredible person and with strength too great to describe. You, too, are a strong person, and have gone through so much. There are no words to describe the loss of your Mom, except to say that she is still with you and guarding over you. At times you will feel her closeness, and that will make you smile. I lost my son when he was in his 20s, and at times I can actually feel his presence and "smell" his soap smell from his showers (don't think I'm nuts - just you wait wink. Time will help, but will never heal her loss. Memories will keep the love for her very much alive. Hugs from julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
Joined: May 2012
Posts: 114
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: May 2012
Posts: 114
Thank you all SO much for the incredibly warm welcome and words of support. You are all amazing people.


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
I too am so sorry for your loss. To battle so hard and lose the fight in the end stinks. I don't think there any specific words that could ease your grief, but hopefully it helps to know you have some extended family out here in cyber space!! The caregiver forum is a good place to find a few folks who have recently lost someone. That might be a good place to look at and read.
Thinking of you,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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