| | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | I'm new to posting here, so first I want to say hello everyone. With all the support that we give at home, to be able to come together somewhere to support each other is a beautiful thing. It shows how much we are all capable of.
On a personal note... My husb. Matt is going in tomorrow for a lobectomy of his lower left lung. He's told me that he will tell the docs dnr, no additional measures, etc. if his heart stops during surgery... that's it. he's done.
I can respect that on some level. We've had a hell of a time the past two years.
It began in his tonsil, family doc kept prescribing antibiotics thinking it was strep or whatever. When his right tonsil took up most of his throat space, he finally got an ENT referral. Cancer diagnosed in June 2009. PET scan showed it was already in his lungs. He refused neck dissection partially out of vanity. He didn't want to lose that much of "himself". All teeth pulled on right side of mouth. Lung tumor biopsy then resection July 2009, along with PEG inserted. Rad+chemo lasted until Oct 2009, with pauses for two hospital stays for collapsed lung and infected PEG site.
Dec 2009 - Clear PET.
April 2009 - Two lung tumors pop up... one in each lung.
Unsuccessful and brutal chemo attempt.
They decide to biopsy right lung. Same cancer, another thorachotomy is done in August 2010. Left lung... not in good place to biopsy, they decide that it doesn't "act" like the other so it's not going to be the focus.
Oct PET, left lung tumor grown to 6cm now, that's almost double from Aug. scan, plus a new growth on his pelvic bone that will need radiation asap after he's recovered from lobectomy.
I'm stressed.. VERY. I work full time to keep insurance, and all day today i've been shaky and having anxiety attacks.
I just needed to vent.
So, thank you for being here, and for reading my story.
Christine
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Christine, I'm so sorry to read about your husband. All caregivers have such amazing compassion and strength. I admire you all so much. You sound like you need some help yourself, have you been to see a doctor about your stress and anxiety? Please do and look after yourself. You are in my thoughts and I hope surgery goes well tomorrow.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | 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, Im so sorry to read about what you both have gone thru. Being a caregiver takes a very special person. Its not unheard of for caregivers to get burned out and some also need anxiety meds. Please dont forget to take a few minutes every day for yourself. Best of luck with the surgery tomorrow. I will keep you and your husband in my prayers for a successful outcome. ((((HUGS)))) from one Christine to another 
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: Jun 2010 Posts: 87 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 87 | Christine-
What a lot you have been through! Praying for peace of mind for you and rest for your body!
Susan
Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland.
10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck.
T1N0M0. IMRT started 11/22.
Never smoked, light social drinker
Also happen to be ICU RN
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | So sorry, Christine for what you and Matt are having to go through. You really do need to take care of yourself. Hope things go well with the surgery tomorrow. Keep in touch and let us know how things are with both of you.
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 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | Ahhhh Xanex. A life saver for sure! Or sanity saver/anxiety relaxer. I only take a half of what I am prescribed and I'm fine. Get to doc and get something. And God Bless you and your husband.
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: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Dear Christine,
So sorry to hear about what you and your husband Matt have been through. I'll be praying the surgery goes well today.
Hugs,
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: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | The lobectomy is complete, and just in time, the cancer had branched out to touch his diaphragm and pericardium. Thank GOD it had not invaded his heart. The surgeon also found and removed two additional wedges from the upper left lobe and sent them to lab for confirmation that they were cancer as well.
He's in ICU for a couple days, but was sitting up and talking when I left.
I'm so thankful that this surgery is over, but the frequency of the malignancies make me feel like we are trying to climb an icy hill in roller skates.
And people ask me prognosis??? Hell if I know. No one is telling us. | | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Tough to realize how close the cancer was to his heart. Tough to have it hit home so hard that he was almost gone. Harder still knowing that they found more cancer that didnt show in the PET and that this battle isn't one we can really win.
Yes, I will see my doc tomorrow. I need help.
Last edited by CMMoore; 10-28-2010 06:04 PM.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | I am so sorry that you and Matt are having such a difficult time. It is overwhelming. Good thing you recognize you need some help. As to people asking about prognosis, jeez that is so very insensitive. People say some stupid things and ask inappropriate questions. Steal yourself. When I was confronted with comments or questions that made me uncomfortable, I replied with "how can you (ask, say) that to me at a time like this?"
Another good one is, "Why do you need to know?"
I wish you and Matt comfort as you more forward.
All my best�
Anita
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
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