#18592 09-13-2005 03:45 AM | Joined: Jul 2005 Posts: 2 Member | OP  Member
Joined: Jul 2005 Posts: 2 | Hi everyone,I am new here and want to introduce myself.My name is Deborah and I am married {21 years] and have a 10yr.old son.We found out my husband has cancer stage IV.Right tonsil primary with lymph node involvement in both sides.He is getting radiation and chemo at the Cleveland Clinic.He just finished his last chemo and has 9 more radiation treatments.Right now he is in the hospital and very sick.He has not had any thing to eat or drink in weeks.They are giving him fluids thru IV now.They have tried to put in a Core pak but he vomits it out and they say they can't put in a Peg right now because his white blood cell count is very low from the chemo.He can't talk because his throat and mouth hurts so much and he chokes on the excessive mucus.He is so weak....My son and I are so scared.We both cry a lot because we are so worried we will lose him.It breaks my heart to see him like this and not be able to do anything to help him.Can he beat this? The doctors will not let him come home until his cell count goes up and they get a Peg put in and this makes him crazy.I am so scared I am going to lose him.My whole life feels like a bad dream right now and I feel like I am in a fog.Tears are always right under the surface and I try to keep myself together for my son's sake.The hospital is 50 miles away from our home and that makes everything even harder.Thank you all for listening and God Bless all of you that are going thru this or have gone thru it. | | |
#18593 09-13-2005 05:22 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Deborah,
Welcome to this forum -- I'm glad you found it, but I'm very sorry to hear what you're going through now. It sounds as though your husband really does need the constant (in-hospital) monitoring of his nutrition and hydration, given how he's reacting to the treatment.
He is at that point where the cumulative effects of radiation and chemo can be pretty horrific. There are plenty of people here who have been through the pain, the nausea, the relentless fatigue, and everything else that goes with it, and can share their experiences with you (as well as their experiences with recovery).
Feel free to post your questions here, and also explore the rest of the site, which contains a ton of very helpful information.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#18594 09-13-2005 05:30 AM | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Deborah,
I'm so sorry to hear your family is going through all of this. My husband Ron wound up in the hospital too during treatment, and like you, I was so scared I was going to lose him. But I'm relieved to say he is 10 months post treatment and doing good. Going through this treatment is tough, but it will get better, trust me. Hang in there. As Cathy said, there is so much help and support here. Best of luck. You will be in my prayers.
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.
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#18595 09-13-2005 05:37 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Deborah, I am so sorry to hear how difficult things are in your life right now. Welcome to the neighborhood, though. You have found the most incredible spot on the planet to rest your weary soul. Many of us have been exactly where you, your son or your husband is right now in life. The journey is rough but many have traveled ahead of you to help walk with you. I know this may sound crazy but try very hard to not think about what might happen down the road but rather make each and every moment all you can possibly make it. A wise man once said that every second spent worrying is one that you will never get back. Do not waste even one second on worry. Or at least, I think I am a wise man  ! I sat in the hospital in a daze many times towards the end of treatment, wondering if it would be easier to just give up. Yet, somehow, some way, thinking about all the love around me and those that meant the most to me kept me fighting. I met a very young gentleman in the waiting room that grabbed me by the shoulders and said no matter what, you fight with all you have for those boys that love you so. He told my wife and me of the seemingly unbearable journey had been on with lymphoma. Yet, I could feel the spirit and the love as he talked. Take the time right now to make the memories. Each and every day you will find small things now that will stay in your mind forever. Cherish everything in life as it is...because it is life. I was feed TPN (IV) feedings for several months so I know what your husband is going through. It was no picnic but through the support of many of my friends here, I made it through one day at a time; literally minute by minute at times. We are all here for you, no matter what your need is at the time. Hang in there, I know it is rough. It may not get better in the near future but it will improve. Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#18596 09-13-2005 07:57 AM | Joined: Jul 2005 Posts: 2 Member | | OP Member
Joined: Jul 2005 Posts: 2 | Hi, Thank you all for your kind words I sure needed some today!! My son is having a real hard time today,crying etc.It is good to not feel so alone.Thank you for your prayers too,I know prayer helps.I will try to cherish the good things in my life right now.The precious moments spent with my husband and son when we are all together.God Bless you all for your kindness. | | |
#18597 09-13-2005 09:00 AM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jul 2005 Posts: 150 | Deborah-My dad had tonsil cancer-he finished his treatment today. I can completely relate to your crippling fear. Here's some tips. Bring stuff from home to make the hospital room homey. I suggest a little lamp, his own pillows and blankets. You see, they overdosed my father on narcotics-they almost killed him. He was hospitalized too on a couple of occasions. I felt so numb, so scared. I was convinced that the medical intervention that was created to save him would kill him before the cancer. He looked like a freakin' skeleton. We prayed and prayed and prayed. The hospital did infact turn him around though (under my VERY watchful eye.) Your hubby is in a good spot there where he is. He needs the fluids and care. Pray for strength, you will receive. I promise. There will be a positive end-there will.
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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#18598 09-13-2005 01:47 PM | Joined: Aug 2005 Posts: 22 Member | | Member
Joined: Aug 2005 Posts: 22 | Hi Deborah,
Sorry so rough. My husband had surgery in April and it was awful. I read some of the posts where people are doing so well and back to work, etc., but it is not that way for everyone. My husband had and has a very rough time also. He is also fairly young (44) and we have a 6 year old son. It really will get better though or maybe we just get better at dealing with it. When my husband came home he was so sick and a full time job to care for, and I am an R.N. I try to be positive, but I think it is ok to be scared-I think we can't help it. It is terrifying to see them suffer and to think of losing your husband and your child's father. Not to mention all they would miss. These are the realities. But, you you will get through it, for him and your son. I really do know how you feel and hope ypu dind some peace in the near future.
Doreen
Stage IV scc base of tongue/larynx
Total glossectomy/partial laryngectomy/radical neck dissection 4/05 followed by chemo and rad. Tonsillar Non-Hodgkin's lymphoma 1996(cured and not related)
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#18599 09-13-2005 02:20 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Welcomr to the Oral Cancer Foundation Deborah,
Sounds like everything that can go wrong is. He is going thru the roughest part of treatment right now. At times it feels like it will last foreever, it doesn't!!! There is light at the end of the tunnel, you may not see it yet but you will soon.
Being a caregiver is almost as diffucult as being the patiant. Hang in there knowing you can post any question you can think of here. Someone with similer treatment will respond.
The effects from radiation usually continue for a few weeks after treatment ends. That is common. The rule of thumb is one month of recovery for each week of treatment.
Many of us have been through what he is going thru and survived, He can to!!!
Please keep us posted as you both travel down this rocky road.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#18600 09-13-2005 02:52 PM | Joined: Jul 2005 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2005 Posts: 54 | Hi Deborah,
Just wanted to let you know you and your family will be in my thoughts and prayers. My husband has 8 more treatments to go and this does seem to be the hardest time for him so far - his white blood cell is low too and he is very tired and lots of mucus and coughing. I'm from Cleveland myself - we're getting treated at the Clinic's Moll Center by Fairview Hospital. You might want to ask a nurse/MD/social worker about supports for you and your son. It might be good for him to have someone to talk to about what is happening. Sometimes I think anxiety is the worst part of this and that we have to trust that the treatment will be over at some point and our lives will go on. What do we do with all this suffering though? It sounds like you are a loving family sticking this out together.
Peace and all good things,
Janet
Caregiver, Husband diagnosed 7/6/05 SCC left tonsil, T2N2bM0, Concurrent chemo/radiation begun 8/2/05 (Cisplatin). Received 2 cycles cisplatin, 38 radiation treatments. Completed course 9/27/05.
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#18601 09-13-2005 03:29 PM | 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,Deborah, just want to add our best wishes and prayers for your family. You all are experiencing the worst right now, but the worst can be faced and a hopefully a better day will be around the corner. It's really tough for you because you have to be strong for 3 people.Please Don't be reluctant to get your feelings out here. There are 1000 hugs waiting for you. Amy
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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