| | Joined: Oct 2012 Posts: 12 Member | OP  Member
Joined: Oct 2012 Posts: 12 | Sorry its been so long between postings. The last couple of weeks have been rough. A colonoscopy and upper gi showed that jims cancer spread to colon, stomach, and intestines. he has internal bleeding in his colon and kidneys that cant be controlled. he was getting weekly blood transfusions to control his blood levels until wednesday when the pain became to much. his kidneys and liver are failing. jims skin and whites of his eyes are turning yellow and we cant get his hemoglobin level above 9 and it drops within days to around 5 when he gets another transfusion. his quality of life is no longer what he wants for himself so the doctors had a very honest talk with us and told us there was really nothing more that they could do. jims cancer was very aggressive and has spread to virtually every organ. his liver and kidneys are failing, we cant control his blood and they suggested hospice. we chose to do hospice in our home and started that on wednesday. jims pain is now being controlled with a morphine pump, there will be no more blood transfusions or any cancer treatments. the doctors think that sometime between christmas and new years jims blood levels will drop so low that it wont be able to sustain his heart and it will just stop. hospice is going to keep him medicated and comfortable until the end. they have promised me that when his blood pressure drops they will increase the morphine to put him in a deep sleep so his lungs dont start acting up in the coughing spasms that he has that drops his heartrate. it is a very heartbreaking but yet heartwarming time right now. all our children came home to spend the remaining time with jim. we put a hospital bed in the living room so he wont feel trapped in a bedroom. we have family and friends visiting everyday and saying their goodbyes. we are able to discuss jims wishes and we even planned his funeral together. although i was hoping that jim didnt leave us over the holidays we appreciate the time we have with him now and are trying to enjoy every minute before his blood levels drop and he doesnt wake up again. it could happen in a matter of days so we are spending our time talking, crying, laughing and remembering wonderful times together we have shared over the years. jims death is going to devastate me and many others but i know there is a better place with no cancer and suffering. he earned his right to be there and i know that someday we will be together again. i pray now that this transition goes as pain free and comforting as possible and that my kids and i can find the strength to get through our lives without him here. ill update when my amazing husband is finally released from his pain and goes home. thank you all for your continued prayers and support. my husband fought an impossible battle with courage, strength and dignity. i couldnt be more proud of him and will always remember him as he was before he got sick. i will not allow cancer to take that memory from me.
Age 44.Tonsil HPV stage 4. Radiation/Cistplatin/peg tube. Spread lungs,stage 4. Lung wedge removal 12/5/2011. Carboplation, erbitux, 5fu until 5/2012. Clinical trial Anixinib.Disease progession in lungs,brain,colon,stomach,intestines. Hospice started 12/20/2012, passed away 1/3/2013
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Wendy, what a loving, caring wife you are. Your love for Jim stands out strongly. You have been and are a wonderful caregiver and advocate for Jim. Your strength amazes me.
I wish you, Jim and your family much love, joy and peace as you travel this final journey.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Wendy, you and Jim are in my thoughts. Special prayers for you both.
Gloria
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | 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 | Thinking of you and Jim and all of your wonderful family. I read your post with tears in my eyes while at the same time being so proud of you both. Strength, dignity peace, courage..you have both demonstrated each to us all. Many Hugs
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | So so sorry but I'm glad you had time to spend with him at home.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | I am so sorry to read this, Wendy. You've really got something to be proud of by your loving and caring of Jim. I pray that he doesn't suffer and gets peace soon.  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: 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 | Wendy, thank you for coming back and sharing Jims update with us. My heart goes out to you , Jim and the rest of your family during this difficult time. Im sure its a very emotional time for everyone full of ups and downs.
Enjoy the precious moments you share together. You will always remember every detail of these meaningful times. Wendy, you have been a top notch caregiver to Jim. He has been very fortunate to have you take care of him.
Best wishes with everything!!!
((HUGS))
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: 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 | Hugs and prayers to you both.
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Wendy, I'm so, so sorry. Prayers of peace for both of you. Jim is really lucky to have you as his loving wife and caregiver. Hugs.
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: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Wendy, my thoughts and best love to both of 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
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