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Joined: Oct 2012
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missyp Offline OP
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I have so many feelings about this part of my husband's journey. The one that keeps me up at night is should I take FMLA now or try to keep working? I'm fortunate enough that I can work from home, but I don't want to miss a minute of being with him and helping him. I don't want to look back and have any regrets. He is now under Hospice care at the urging of his drs. He is at home and can walk around a bit. But his weight had dropped to 107lbs and he has been hospitalized for infections for a week each for the last two months. His parents are coming to visit for a week at the end of this week.


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
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Missy Im so sorry to read of your husbands condition. Im sure it must be terribly difficult for you both.

Are you able to work only part time for a few weeks? Or many take an extra day off every week? That would give you more time with your husband and maybe it can stretch out your leave.


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
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missyp Offline OP
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good ideas...thanks..its been really tough lately


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
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Hello Missy, I don't know what to advise you. Being able to work from home is a great option. I just want you to know that I am thinking of you both.
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!
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I'm very sorry to hear about the worsened condition of your husband. Having hospice is a good source of support so take advantage of all the knowledge they have to help.

Being able to work at home is certainly better than having to be at an office. If you can maintain minimum performance of your job duties with your current situation, keep doing it. You will know when the time comes to devote all your energy to taking care of him. God bless you both. Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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missyp Offline OP
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I'm leaning towards vacation and FMLA...I just don't want to have any regrets...the last couple of days have been rough


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
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Despite how much we deny it - we know when things are going down hill. To be honest, at his weight. I would say you should take the time now. Be with him enjoy your time together as much as possible. I have watched two people die slowly (one of cancer) and it is heart breaking. You don't want regrets hon. I would also call his parents and maybe suggest they come asap. I am not sure of his natural size, but 107 is TINY and my friend was 5 feet,and 70 lbs when she died. Do a comparison. If things are bad, that's a sign that the end is near. Hugs and blessings and I am so sorry you have to go through this.


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
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I don't know if this is common knowledge - you can take "intermittent" FMLA. That way, you can take FMLA in bits and pieces as needed. It can help stretch out your FMLA, especially if you are concerned about using it up too soon. There's no time limit as long as you don't go over your 12 weeks per year (keep track of your hours until they add up to 12 weeks). I found it helped me cope with everything when I could escape into the work world and focus my mind on something else for a bit.

So sorry for what you are going through, big HUGS, tender wishes.


Caregiver to husband with SCC BOT HPV+ T4N2cMO stage 4a
CT scan 7/23/14
Biopsy 8/7/14
PEG tube in 8/15/14, out 4/2015
35 rads, Cisplatin X 3 - finished 10/27/15
cancer free May 2018



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KJB Offline
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Missy, I am so sorry to hear what you are going through. It is a good thing that he can still walk around and he is in the comfort of his own home. My father spent his last 2 weeks in the hospital, couldnt move or eat or say anything much.
Time is so valuable now - spend as much of it as you can with your husband. Give him every meal that he wants. Keep turning on soothing music and keeping his mood lightened. Cheer him on and tell him it's all going to be okay and the journey ahead will be a beautiful one!

Big hugs. And also take care of yourself. Sometimes a caregiver focuses so much on the patient that we end up being unwell physically and emotionally.
Praying for you and your husband and hoping God will give you the strength you require to face the upcoming days.



Father had oral cancer stage 4A. Diagnosed 17th May.
Partial glossectomy and graphing done from hand.
Radiation 30x. Chemo - cisplatin 6 rounds.
Finished chemo and radiation in Aug.
PET - Nov - recurrence and spread to liver and lungs
Chemo started - erbitrux and 5fu.
2 rounds done.
Passed away 12/23/2014 - i believe he is in a much better place now smile
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Oh Missy - I'm so sorry to hear of this sad turn of events and for all that you and your husband have had cope with. It's good that his parents are coming. I'm sure that together you can all help each other to make this sad time a little easier to bear. And do lean on the Hospice people, too - I've heard such good things about them and all that they do. Such good, thoughtful suggestions you've received above. I agree, time is valuable. Perhaps you could try and find out what he likes to do and help him to do it if he can. Sometimes it's the smallest or what seems like the most insignificant things that become important to do. When my ex-husband had been sent home from the hospital, during the last week before he passed, what he wanted most to do was go to Walmart in his truck. And that's what he and his wife did. Be good to yourself, too.


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.)



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missyp Offline OP
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thank you for all of the advice and kind words. His parents are with us for the week and he asked them to stay another week, not sure if they will. My boss has been extremely understanding and has even offered to give me some of his vacation time. So I am truly blessed. Hubby had a good day today and I was able to take him to Publix..our grocery store...it's the little things in life! I will stay home as long as I can and it's good to know I can do intermittent as needed.


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
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"OCF Canuck"
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That's awesome... best of luck!


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
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