#35418 08-01-2007 03:48 AM | Joined: Jul 2007 Posts: 20 Member |  Member
Joined: Jul 2007 Posts: 20 | Christine...I've thought about you so much over the last few days...I'm sorry you're feeling bad...we are having a gorgeous sunny day in the WNC mountains...I so wish I could bottle this up and send it to you!...I'm sure it's hard to keep your spirits up right now, but the old saying, one day at a time, just covers it all...the reality is sinking in faster and faster for me...soon I'll be where you are and hoping to hear from you with good news about your rapid recovery...give me a light at the end of the tunnel like so many are trying to do for you...hang in there, girl and show us your stuff!...many hugs, Katie | | |
#35419 08-01-2007 10:00 AM | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Today was better than yesterday and tomorrow will be even better. PEG tube and port werent quite as easy as I expected, I ended up staying overnight in the hospital cuz of the stomach spasms and pain. Was given hourly morphine shots which helped tremedously. I was released on Tues. morning, my doctor wouldnt let me have the teeth removed due to worrying about infection going into the new port with is reight by my heart. He gave me a special very potent antibiotic to take right befor teeth got pulled. That was today, Had my hearing test, picked up flourdie trays and had 3 teeth removed. One thing I hadnt thought of is a visiting nurse. My insurance covers 30 days of having a visiting nurse come to check on me and help me with the PEG tube. Today she came and for right now it will be once a week. She said I can always get it extended past the 30 days if we both thing its necessary. Tomorrow is Thursday and I cant wait, because I have nothing at all to do, no doctor appointments, phone calls or paperwork. I can rest all I want or even go outside to check out my garden, see how the squash and tomotoes are doing. Katie---you can do this, its life or death, it will be done and must be done. My idea of this whole thing is I cant be sick, I refuse to be sick Im only 44 and have teenagers to raise thats my purpose in life. I know Im going to go thru a few bad months and at times feels so low cuz Im very very scared of having to depend on children, this site helps me tremendously, especially Margaret, she is an angel sent to help everyone while she helps her husband fight his battle. Amy also is a big help she is very knowledgable and to the point. She will tell you what to expect. Everyone on here is here to help when they can. My light is thinking about trying to eat Thanksgiving Dinner. If that isnt possible, the it will be Christmas dinner or Easter dinner. (and Im not cooking this time either  )
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 | | |
#35420 08-01-2007 10:12 AM | Joined: Mar 2007 Posts: 179 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2007 Posts: 179 | Chrisitine, Attitude is 1/2 the battle!! WE are all here for you. Keep posting and we will be praying for you. Its a tough battle but you will get through it. 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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#35421 08-01-2007 11:55 AM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Hi, Christine, why don't you cook a "pre Thanksgiving" dinner before you start radiation- lots of soft mashed potatoes, moist stuffing and gravey. The dark meat from the turkey sould be fairly easy to swallow.Cranberry jelly to help it all go down. You are on your way to recovery! 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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#35422 08-01-2007 01:34 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Christine,
Seems like you are moving along at a quick pace now and that's important.
I'm in Bucks County and although that's not just right around the corner, it's not that far. If there is anything you can think of that I can do to help, I will try my best to get up there.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#35423 08-01-2007 01:35 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Christine,
Seems like you are moving along at a quick pace now and that's important.
I'm in Bucks County and although that's not just right around the corner, it's not that far. If there is anything you can think of that I can do to help, I will try my best to get up there.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#35424 08-01-2007 01:47 PM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Christine,
What great news on the Visiting Nurse front. That will be a big help, especially since you are so remote.
It sounds like you are in good shape to start on Monday. And, I'm glad you have time tomorrow to relax and enjoy the day.
You are going to be happy you got the port in. The past two weeks of chemo, my husband's usually cooperative veins were not very cooperative.
Amidst all of your medical procedures, are you keeping up with getting in loads of calories? Ice cream shakes, mashed potatoes and gravy, really creamy macaroni and cheese...and, all those other things they tell you not to eat in diet magazines? Those are all GREEN LIGHTS now and for as long as you can tolerate them!!!
How did your kids fare while you were in the hospital?
Margaret
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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.
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#35425 08-01-2007 02:31 PM | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | AMY you are the best! Thank you for the Thanksgiving Dinner idea, I love it! Im going to have one at my house on Sunday, I will get one last shot to eat what I can. Anyone is invited from this site who would like to attend, and its very casual. I would love to see the people who are in my area, Nellie, DonnaRose, and Jerry. If anyone elso would like to travel you are also welcome. Mashed potatoes and ham are my specialties. This is exactly what I needed, something to look forward to. THANK YOU EVERYONE!!!!! Let me know if anyone can attend Back to serious matters, Margaret, my children were remarkably fine without me for the night. You only have 2 more treatments to go, its almost over. Then let the recovery begin!!! I loved your website . My daughter stepped up and was responsible and helpful for me. My son has missed work all week transporting me to my appointments, tomorrow he goes back. They are going to do much better than I thought with this. Especially w/ having a nurse come once a week to start, it can be changed up to 5 days a week. The hospital will even send home health aides and therapists for family and personal counseling, all come right to my house all thru my insurance. Now I know w/ this type of support I will be fine to fight this battle and I will succeed. This is exactly what I needed to beat this. Christine
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 | | |
#35426 08-01-2007 06:03 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Christine,
I too have read your stories , and I am sorry for all that you go through . And I myself am a mom of 5 kids under the age of 14 and yes it is hard, while I am not alone ..somtimes my husband isnt the best at dealing with all of this.
Kids are remarkable and they will see you through it in more ways the one !! Websites and Blogs are a great source of venting as well as this site. we are all hear in your corner pulling for you and even more holding you in our hearts. I dont know how far away you are from me in Ny ..how close to you to Binghamton ? I can try to do my best to do what you need. Right now I am working on a Thing for our local fair to raise awareness for this NASTY disease !! ANd trying to plan a reunion for everyone here as they so quickly become a family to us. Please know that we are always here !
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#35427 08-02-2007 01:34 PM | Joined: May 2007 Posts: 24 Member | | Member
Joined: May 2007 Posts: 24 | Hi Christine,
I am a single mother too I had cancer of the tongue and lymphnod. I have a 14 year old son. I was lucky the cancer center was only 5 minutes away from me so I drove to my appts. My mom came for my chemo. I had my parents help with getting food and my son I had to go in for a neck disection in march and my friend came and watched my son for 4 days. Now I wish my son could drive because he could of took me to my throat dilations. My treatments ended last october but I am still on the peg tube and slowly recovering I lost 50pds. I know being a single parent is hard. Did you start treatment yet? I will be praying for you I trust in the lord to bring me through this. My son is a big help. Try to keep eating and swallowing as much as you can through treatment because radiation screws up your throat and your jaw muscles
god bless you
katrina
SCC T3N1 right side tongue DX7/24/06 44 yrs old
Tx 42 IMRT started 9/01/06 Cysplatin & 5fu 2x treatment ended 10/31/06. Partial neck discection 3/07 on right side.
Had tracheostomy 4/08. Had total Laryngectomy 6/09
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