| | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | I was reading through Matt's facebook posts and came across this one from a year ago...
"Chemo night from hell last night. Wife would have held my hair out of the puke if I had any. Kept me in pills and held my shivering hands with 102.5 degrees.. kept me hydrated. Now I know what it is to be loved. Love you BabyDoll."
He knew. I did everything I could. This makes me smile and cry at the same time.
The first week and a half after his passing was filled with tasks to be done.
Now that it's all calming down and I have time to think and remember I cry a lot more. I am trying to write things down so I will have them always.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | That is beautiful, Christine. He did know. An so should you. Let the tears fall. They will help to cleanse and heal the hurt. Take the time you need and so deserve just for for you. I'm sure Matt's spirit is close, soothing and holding you in his arms. Write everything down that you can It does help.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Oh my gosh Christine. I am trying to type this through the tears. I'm SOOOOO glad you found that. I wish you had seen it earlier when the struggle was sooo awful, but, yes, he knew. They all know. Maybe they can't express it, but they know. Thank you SOOOOOO much for sharing this.
Think of you often,
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
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Oh, wow, Christine, what message you discovered! Hugs to you!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 |
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Sigh - so happy you found that message. Maybe it was put in your path to remind you how much Matt loved and appreciated you. You were a wonderful caregiver and I wish you happy memories and calmer days.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Loving the happy memories that come back. I hate that it feels like I put them all aside for so long to focus on the "task at hand"
Advice to all of you. Keep the memories fresh and alive through the whole process. Pictures, journals, whatever... just don't let cancer take them away at any part of the journey.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Thanks Christine. How are his daughters doing? I can only imagine how you are doing. I'm sure it's different by the minute. Think of you almost every day and pray that you are in peace.
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
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | The youngest daughter is surrounded by love and faith and family and is doing very well. The oldest daughter is going through a process much like my own. She/and I spend the first week in shock, avoiding anything emotional.
She said last week was quite rough, and I assured her that I am here if she wants to talk.
A grief counselor from hospice came and told me of a support group locally where the kids can talk to their peers about the loss they have experienced. It will be great.
The counselor was confident that I would be just fine, since my overall demeanor was one of happiness.
I just don't see the point in be unpleasant. It's a curse sometimes, but that's just me.
Anyway, I miss you gals/guys and appreciate all of you. Thanks for taking the journey with me.
Christine
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Thanks for checking in, Christine - I think of you so often and it's good to hear you have family and others close by for support and for sharing the happy memories.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | I too am always checking for posts from you. Ive watched your entire story and know how hard things became for you. I still remember you first joining OCF almost 3 years ago. Its been a long hard road and you held it together with compassion and love. Wishing you the very best of everything!
ChristineSCC 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  | | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Glad the youngest is doing well. I guess they say time heals. Hopefully the older daughter will be able to find support within the group. Please keep in touch Christine. We miss you too and love hearing from you!!
Blessings to you and LOVE your happiness attitude. It really is just healthier than the alternative! Glad you can get there!
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
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I think of you every day Christine, wonder how you are doing.... Know you are in our prayers.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Gone but not forgotten, Christine. I love seeing pictures of you and Matt in happier times that you post on Facebook. You have such wonderful memories of him, and your love for him will keep those memories alive.
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 | | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | This Friday is the anniversary of our first date, and our wedding... I am going to my hometown area and going out drinking with my girlfriends to celebrate the man I love. They have karaoke and a live band, and awesome taxi service for after Saturday I am getting my hair done by a dear friend, and Easter Sunday will be spent with my family. Busy weekend ahead and I am looking forward to it. I am finding resources in my community to help with the little things... I am learning to talk to EVERYONE I see and ask for their knowledge about the city. Whether I need the lawn mowed or the car worked on, I am slowly building my contact list. I had the pleasure of stopping by a garage to have my state inspection done on the car. There was a local "old timer" just sitting and talking with the shop owner. It was great to sit and talk with him a while. The shop owner invited me back anytime I needed someone to give me a hard time I can feel the effects of the sun on my arms at the end of each day, and I feel content in a day well lived. I love you all, and am not going away any time soon! PM me anytime if you have questions. Its not too soon, and I am happy to help if I can. Christine
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Dear Christine,
I'm so glad you're taking the time to look back to when Matt was Matt and he knew the depth of your love and devotion...and that he so much appreciated it.
It's so hard to figure out what to do next after the dust has settled. I wish for you that you are able to find some peace and comfort through the tears. Grieving always takes more time than we want. You are in my thoughts.
xoxo,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Christine, you are amazing my dear friend, and I love you and your beautiful spirit. Celebrate life while you are able, I believe in that.
your friend,
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | There is no "like" button here but I have also been following your journey Christine. We love you too and I am sure there are people here who will be appreciative of your help. Just make sure you have taken some time for yourself first but I see you are already aware of looking for those resources within your own family and community Love and Hugs Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Here it is. Anniversary. #9 since our first date, and #2 since our wedding. I woke up. It dawned on me that it was here. I cried.
I am glad I already made plans with friends to get outta the house, otherwise I'd stay in bed all day with a box of tissues.
Off to pack my weekend bag and celebrate my love.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hope you are able to enjoy yourself over the weekend. You were very smart to make lots of plans. Remember the good memories and know that Matt is smiling down on you.
ChristineSCC 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 | | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Happy Anniversary Honey!! Yes, very glad you are getting out with your girlfriends. Relax and have a good time.
Thinking of you daily. Wish we could all have a party night together!
Love,
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
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Love you, girl!
I agree with Wanda. Sometimes when we need them the most, they show up. I was cleaning out my mom's stuff and setting stuff aside for Goodwill. I was so sad. I reached in a coat pocket and found a tissue with a perfect lipstick lip print on it. It was like getting one more kiss from my mom.
Matt loved you tremendously. I am so happy that you have things he wrote and said to reassure you that you were loved and appreciated. Too many people let those words go unsaid and unwritten. That's tragic.
Sending hugs,
Sandy
xoxox
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Friday night I kept very busy, saw an awesome band, drank a LOT and hand fun. Saturday got 4 inches chopped off my hair for the summer. Went for a long peaceful drive through the country and found a CUTE property with 5 acres. It's on a dirt road, but not far from a highway. There is a creek just across the road. A huge garage/shop where my son and I could build a hot rod or start making demo derby cars (we have several fun ideas to keep us busy) Trees are everywhere so lots of rock gardens hammocks and little oasis opportunities to be created.
Would be such a nice place to heal.
When I mentioned it to my brother, he laughed really big and then showed me on a map that the property he wants to buy is about a mile due north across the creek from it. The kids would all certainly love that!
As much as I love the city and all that there is to do, I am just a country girl at heart.
Kathy, I agree, it would be SO nice to meet you all!
Anyway, just touching base.
Love,
Christine
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Christine, thank you for sharing my dear friend. I love reading these updates, you've been on my heart.
Love you lady
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Christine,
our three acres attach us to the earth and the turning of the seasons; I hope you are able to manage your own patch of green (and the fabulous garage). Be sure to budget enough for the equipment to manage your property so it will be a joy and not overwhelming! Love and best wishes.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Christine,
Thank you for continuing to share with us. Buying the land sounds like a really neat idea. I'll bet Matt is smiling down on you right now.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Christine, its nice to read your positive updates. Glad you enjoyed yourself over the weekend. Buying the property would be a good fresh start for your family. Hope it all works out for you.
ChristineSCC 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 | | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Glad you all don't mind the continued updates... I am totally addicted to talking to you all :P
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Your updates are a wonderful inspiration to everyone here. It's great to see that there is a beautiful life possible after coming though the dark tunnel of the big "C".
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Yes, yes. We LOVE hearing from you!!!
What are your further thoughts on the land?
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
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Kathy - I am going to look at the land Friday, along with another property with just under 4 acres and a lovely creek ON the property. The second one isn't finished, but it's priced accordingly and I have contacts there that can get it done.
I got AWESOME news today.
I haven't looked for work or anything yet because widow brain seriously rivals chemo brain and I don't remember shh right now.
Not to mention the random crying spells may not go over well.
Today, I get an email from the guy that owns the company I worked for back in Arkansas. It says "call me"...
He has finally realized that I carried that office and that without me, the so called accounting manager is a desperate failure. He offered me her job today!!!!!!!!!!!!!!!!!!!!!!!
I cannot even begin to tell you how excited I am.
The slight reservation I have is because he offered it to me several years ago but then didn't follow through with firing her. He'd better do it this time!
I already know and love all of the people there and the job is second nature so I can do it through the blonde moments and the tears! YAY!
Plus my son's best friends are there.
I also got my computer back from the shop today where they were combining Matt's hard drives and files onto my PC.
No charge. That man is great, I'll miss the service when I move.
To be fair... I don't sleep at night, I cry my eyes out a LOT and I am lonely as hell... but every now and then the universe smiles on me and I know I will be alright.
Christine
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | That truly is GREAT news. I'm glad you hadn't taken something else!!
The land sounds like heaven! That is what Kevin wants someday. Probably not around here though. I wish we had just looked for that when we moved here from Alaska, but with the kids I wanted to be close to the town hall which has baseball fields, tennis courts, basketball courts, soccer fields and a pool. Everything we do is pretty much done there. If we had moved where there was land I would be driving constantly. With Kevin gone to work 3 weeks at a time it would have been all me and I just didn't want it.
I'm sorry about the nights. I pray with time it will get better. I can't imagine Christine. Have his girls come around at all?
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
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | The oldest, Amanda has been in touch and FINALLY joined facebook. We have made plans to get together this weekend.
I told her about the job offer and she was really excited for me. I know Matt wanted me to be close for her, but I think he underestimated what a strong young woman she is. She's just like her Daddy in so many ways.
I don't think either daughter ever fully realized just how much I love them too. But, they will see over the years that they remain in my heart and on my mind just like their dad will.
The property is very enticing Kathy... My son however chimed in today with a request to live somewhere "not boring" and our definitions of that happen to be opposite! He wants the city close to his friends. I want the country away from it all.
Now, if I can't get decent internet out there... that could be a deal breaker! We will see!
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Feb 2012 Posts: 151 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2012 Posts: 151 | Christine,
Moving and all that goes along with will definietly keep you busy and exhausated, making sleep easier at night.
The land sounds wonderful!! To have a creek is even better. I want to wake up and look at water every morning when we retire. After visiting my son in FL and his condo had water on 3 sides I called my husband and said I was ready to move!!! AZ would never work for me, all that sand (desert) and no water.
The job opportunity sounds just what you need. Glad things are working out for you and happy to see you still posting.
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | I'm confused where do you live Christine? MO or AR? I know they are right next to each other do you live right on the border or are you moving to AR for the job? lol sorry really befuddled but other than that HEY wonderful news!!! I would so love to live out in the country with a creek and creatures! lol Take pics put on FB I'll check em out! If my kids and grandkids and all my family didn't live right here in OH within 40 mins of each other...I'd be gone down to Florida probably, my friend sells homes down there, mostly the ones I can't afford lol but she is so good she will find me something she said if I really decided to move down there. She sells homes without people even coming down to see them personally, she does virtual showings and she is making a killing down there!
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | LOL, Suez I move so damn much I get confused... I am currently in Springfield MO... about two hours south is Springdale, AR where I used to live, and will be moving back to for the job.
It doesn't help me that the darn city names are so similar. I'll be botching that up for months.
I like FL and such to visit, but I don't like the ocean near as much as a river or good mountain stream... the continuity of flowing water soothes the soul. (mine anyway)
I will post pics on FB this weekend, I'll be looking at the properties tomorrow.
My son was humming and singing around the house again yesterday. It's been a looooooooong time since he's done that. I am so happy to see some joy in him again. He used to always walk around humming a song.
God is good my friends. Even when we don't see how it's possible through the darkness. He's with us always.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Amen Christine!!
See, that was our problem too. Darn kids!! Just kidding!! I figured Kevin and I will have our day, now we know every day is a gift and I'm sad we didn't move where he wanted. Oh well, we are here now and here we will stay until the kids all graduate. We just built the addition for my Mom to live here a year and a half ago too, so I think she would kill me if I announced we were moving. Sure sounds awesome though.
How old is your son?
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
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | He will be 14 at the end of June, AND he just made my night by liking a property I found with 30 acres, mostly wooded. It's the farthest out of all I've looked at and THATs the one he likes. Go figure!
My big concern with it is going to be getting internet out there on the mountain!
And the address.... on True Love Rd.
Kinda cheesy, but I like it.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Girl, this is a family. We'd be missing you if you disappeared on us!
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Christine,
I LOVE the name of your new address! I admire you so much. You have shown (and still showing)so much strength and grace through what was probably the toughest time in your life. You are an inspiration to us caregivers. And what Sandy said is right...we are one big family here! You can't leave!!
Love,
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | LOVE it!!! Hope it is something that can work out. How far would it be from work? The new job?
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
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Aww... y'all are makin' me tear up! Thanks Kathy it's about thirty miles from the office. About 1/2 a mile from a dear friend and soon to be again co-worker, so we may carpool if I can get her to sleep in past 5 am! She's always been an early riser and early to work. There are a few level areas where a future dream house could be built on the property. Lots of peace and quiet, and an eastern view over the mountain tops for the sunrise. The existing house is quite liveable in the mean time. With Matt, I'd have already made an offer, but I find myself hesitating. Tonight there are thunderstorms blazing through and I am off to early sleep. Visiting step daughter & granddaughter tomorrow, will need all the strength I can gather.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Too depressed to get out of the house today. Second guessing everything. Taking a big time out.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | So sorry Christine. I guess there will be days like this. I'm sure it's ok to give yourself a day off.
The land sounds just wonderful. Go with your heart. If you think Matt would have loved it, then go for it. Make a special place on the property that is your place to sit and talk to him! By the creek maybe?
No granddaughter visit today, but maybe tomorrow? Call some of those crazy girlfriends!! Wish I was closer!
Love ya'!
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
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Christine � there are certainly down days but there are good ones ahead, too. Take time to give yourself compassion and to heal at your own pace. Tomorrow the sun will shine and warm your heart. There is a really good little book of quotes by people who have suffered losses of one kind or another. It helped me through many �down� days while going through divorce and afterwards. It�s called �How to Survive the Loss of a Love� by McWilliams, Bloomfield and Colgrove. I found myself referring to various pages in the book from time to time and even started my own diary of similar thoughts encouraged by the ones in the book. It�s just a small, inexpensive little book and available at Amazon. I think it would help.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Anne-Marie I have a list of scripture I wrote down in the days following Matt's death that I refer to often. It's great comfort when I remember to do it!
I did go visit my step daughter and grand daughter today. It was SO nice to spend time with them. I feel much better today.
The mood swings sure come on swiftly when grief strikes. I never know what will set it off. I journal daily, sometimes it seems hourly and that helps me a lot.
Several days have felt so incredibly long. I will feel like a week has passed and it's only been two days.
Work will be good for me. Definitely.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | Christine
I wish I could buy that much beautiful property and live up my a river/creek and listen to the water running and watch wildlife hell I'd probably run some kind of dog shelter for Pitbulls!
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 |
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | One journey ended and another one began. Just keep putting one foot in front of the other...even when you don't want to put either one of 'em on the floor in the morning! Believe me, time will pass and you will heal. Be gentle with yourself. And, know that you are loved.
Sandy
xoxox
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Hello everyone! Today, I finally did it. I went in for a doc check up. Mainly because a pesky spider tried to eat my side and I ended up with some sort of staph infection the darn thing transmitted. But... while I was there I DID talk to her about not sleeping and the all that has been going on. 4 scripts later, and I am on my way to feeling like a new woman. Also, on a side note... Jamie here with OCF got Matt's page up.. just in case you want to read what I wrote about him.. here's the link.. http://www.ocfstore.org/Matthew_Moore_s/257.htmThe pic is Matt holding his first born, Amanda.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | wow, been a while.. i didn't take the land i was looking at, the house had more issues than i wanted to take on. i am now renting a house within walking distance to my brother and his family, my son gets to visit them whenever he likes and we are both coping well with the move. i am back to work, half way through week two and i have to say i am glad i decided to go back. the grief process is a huge challenge and with every good day comes the realization that he isn't here to share it with me. bittersweet is the norm for now.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Here for you hon...always...xxxx
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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