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Joined: Jul 2006
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I haven't been able to post, but I did get a chance to read all of yours. Thank you so much for the support. It means so much to have other family members, caregivers, and especially people with cancer give their support. I don't want to post some of the things that I post, but I have to. I can't imagine how hard it is for others to read some of this. I need for people to know. I need to share all of this because maybe there is information someone can take away with them that can help them or someone they know.
I just got home from Santa Barbara. I spent the night with my dad every night. I sat with him everyday. He smiled and winked when he could. I talked to him and he nodded. I had to stop his tube feedings because it was causing way too many problems. He was swelling. They couldn't lay him down because he might choke on something coming up. He got diabetes. His residule was always high. He wasn't using the food. The doctor explained that he actually didn't need as much food because he is not as active. The food was making him uncomfortable and sick. I still felt like I was starving him, eventhough I saw the swelling go down, saw his stomach go back to normal, saw the numbers go down. It was still very hard. He is still hanging on. He has his oxygen on his trach, he has his patches on, he is on decadron, ativan, some fluids fo hydration(not much), and dilaudid pump. They told me he would probably go on Saturday. It is Wednesday. I couldn't stop kissing him and telling him that I loved him. It is funny when you tell everyone that you are "ready". It is a lie. I am not ready. I wasn't ready when he first told me he had cancer. I AM READY for him to stop being in pain. I tell myself where he is going there is no cancer, no tumors or pain or confusion. It is a better place.
I have become so attached to his doctors and nurses and palitive care team. The hospital was going to move him the other day (I don't know why you would move someone in that condition with hours to live to have them be uncomfotable all over again in a new place????) to a hospice. I understand hospice. I like it a lot. But I couldn't do it. The hospital didn't need a bed or anything. AND he is getting hospice in the hospital. We couldn't be away from our "team". I love them for what they have done for my dad. How they have treated him will stay with me forever. He came out to California for a reason. I think they were waiting for him.
Well, I had to say goodbye. My dads sister and brother are with him, and will stay until he goes. He is in a coma like state. No pain. I am doing the rest of the stuff from home. Funeral agangements, etc.. I'd rather chew on glass.

Oh yeah, some interesting info-
I did find out that my dad has some viruses just from "living his life". You can have a virus panel done. They did one at Issel's Clinic. He tested positive for two different herpes viruses(there are 16! I didn't know that) and Epstein Bar Virus-from mono. Most people get exposed to this by the time they are 18 months of age. No big whoop. Right? Well this virus has been linked to Chronic Fatigue Syndrome. Viruses can cause your cells to mutate. Dr. Kim from Issel's Clinic is writing a paper on viruses and cancer. I'll try to get more info. I don't know if there is great significance here with my dad, but I know that it doesn't help your immune system having these. You can restore your immune system. This is key in the fight against cancer. Creating an environment that cancer is not welcome in and/or doesn't thrive in.
When I'm back to my Google-happy self I have a mission. I hope everyone is well. Love always Karen and (Mr. David Allen Bullard) Dad


karen and dad
Joined: Apr 2007
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Dear Karen,
I admire your strength and pray that you are able to keep it up. My brother was in a coma for three days before he passed, no matter what you expect, how prepared you think you are -you are never quite really ready to say goodbye. I'm so happy that you were able to spend that special time with your dad while he was still awake and aware. I'm certain that it meant a lot to have you with him. My offer still holds, please feel free to call me, anytime. God Bless you all. Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Just love and hugs Karen--you so love your dad--I did mine too and as you say the 'expectation' doesn't help the reality--but 2 years on, can tell you that I treasure the 3 years I looked after him and the times I spent at his bedside and I'm certain he's in a place now where he's no longer suffering.
And well done for your attempts to help others--to take my mind off things, may look up my own 'herpes simplex' which has never gone away, as well as a bad bout of hep A in 1981. Gives me something else to focus on!
Stay strong and be proud of yourself for what you've done and the relationship you had--it will have meant a lot to him smile
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
Joined: Aug 2006
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Karen,

It's hard for me to know what to say to you, other than keep posting here when you need to, as I think it's a way to say things that aren't always easy to talk about... I feel your pain, but you know that you did everything possible to help your Dad through this difficult and sad process. My father also died after a long illness, and I will never forget the times I spent with him, holding his hand, talking to him about wonderful things, and feeling so sad inside... No matter how much you try to prepare for it, you are never ready for that final departure...I pray that your father has a painfree and comfortable last few days.

Ginny


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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Hi Karen,

I have been struggling to find words to respond to your posting, and I am falling short.

I admire your spirit, your strength and your love for your dad.

I will include you, your dad and your family in our prayers.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
Joined: Sep 2006
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Karen,

No words can express my sorrow for you and what you have been through but I'm sure your dad is is resting at peace now and I hope you will emerge through your pain unharmed. Continue to be strong.


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.
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Karen...I hope you are finding strength in the love and concern showered on you and your dad through this site. Please know that our hearts go out to you both, and we hope that you will continue to come here for the strength you'll need in the coming days and weeks.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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Karen,

My thoughts and prayers are with you and Dad. My father was diabetic and passed away 2 years ago from problems from it. It is hard to watch the one Strong man in your life become so weak.

Take care of yourself and know there is help here if needed.

Take care,
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
Joined: Mar 2007
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Karen, my thoughts and prayers are with you and your family. There is never a time to be ready... You have shown strenght and courage through out this ordeal. I noticed you said your dad had the Epstine barr virus. they found that in my husbands tumor on his neck and aked if he had ever been to South east Asia., He was in Vietnam for 14 months during the war. althought they say there is no connection to the cancer. I asked ,then why did you ask!>>> Interesting.... Prayers to you all. LJ>


CG to husband 53,39 rads. 3 rds cisplastin ended 6/2/07 Tonsils removed 1.10.07 11 of 20 nodes positive- lump removed on rt. side of neck 1/26/07 cancer of nasal pharnyx TXN2MX 2nd rd. of chemo- carbo/taxol on 6/11/07
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Dear Karen, please know that many, many caregivers here are sending you the message "A Very Hard Job Well Done"! Going through this with someone you love is a true test of your spirit and strenght. The next months will be difficult for you, so please take care of yourself. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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