Callie, I know what you are going thru and how difficult it is. I am so sorry!!! Please try to calm down. This isnt helpful to you, your husband or your children. Its time to get a game plan going. How about trying out a different cancer center? If your spouse is from PA, there are several there.

Maybe it would be a good idea to make some tapes of your husband with the kids. This way they will always have them to watch.

There are many caregivers who have a hard time dealing with everything their patient goes thru. Many see a therapist and/or take anxiety meds to help take the edge off. I know you have just been given some shocking news and its such a difficult thing to comprehend all at once. It might not be a bad idea to seek out someone to help you. Many cancer centers have counselors who will help the whole family. Please look into it. Everyone needs you to be ok. Please dont forget to take care of yourself too.

(((HUGS)))

Callie,
I have been exactly where you are. In Feb. we were told that the tumour at Kris's Base of tongue was back and extending down into his larynx. Our only option was the total glossectomy and total laryngectomy. I was terrified. I also cried and cried. I took sleeping pills, sometimes 2 in order to sleep. I grieved for both Kris and myself. The thought of never hearing his voice again was devastating. We were told that he would be dead within the year without this surgery. This was his only option.
So 2 weeks later Kris had the surgery and 4 weeks after this he came home. He has gone from strength to strength. It has not been an easy journey for either of us, but I love him to bits and fight for him and encourage him constantly.
He communicates at this stage using an IPad and the speakit app. It is slow but okay.
He has mastered the art of swallowing and drinks all his Fortisip plus other drinks. At this stage he refuses to try anything thicker than thin fluids. We use the PEG for medications only.
We have both learnt and adapted to cope with the permanent trache. Yes it is quite disconcerting to begin with . This is all about adapting to what life has thrown in our path.
You can do this. I am also a believer in strong family love helping Kris to get through..
We were told that this surgery was our only option for life.
Would we take this option again? You bet. I also would recommend you record your husbands voice. He will get another voice eventually as laryngectomees do learn alternative methods of speech, but do record his current voice. I miss Kris's voice.
I suggest you talk to your family Dr and ask for some help to get you through this acute stage. You will get through it. Please email or pm me if you want. I am always here for you. Thinking of you and your family, sending you strength and strong positive thoughts. Don't borrow sorrow from tomorrow.
Tammy

Thank you both! I haven't heard his voice in awhile. He was barely understandable before radiation, but since he hasn't talked. I'm just afraid if we take the time to get an appointment and meet with new doctors it will be to late. I've had to suction his trach and mouth out almost before every hour tonight. He seems so much more weak than he already was. For the past almost two months he has been having hot flashes. Just now he had beads of sweat all over is face and head. I've asked the doctor about thyroid he said they don't check for that til 6 months out of treatment. I just feel like he is giving up already. I told him I would rather have his new self than not at all. I hate seeing him like this! If this stupid mucus would disappear, he would probably have more strength and rest.

Callie

Tammy did Kris's doctors tell you that there was only 25% chance of it NOT coming back? This just doesn't sound right to me...
Callie

Callie, My heart aches for you and your family. I wish I had more help to offer you. I agree with getting a 2nd opinion. Start reaching out by phone if you can to MD Anderson or Hopkins. When my mom was diagnosed with pancreatic cancer we took her to Johns Hopkins in Baltimore, MD. They have an entire cancer center to help the entire family physically, spiritually and emotionally. This totally sucks and I wish there was something I could do to help. I will keep all of you in my prayers. This just sucks! As a caregiver we have to step up and fight for our loved one when they just don't seem to have the strength. Hugs, Wanda

I'm so sorry to hear about you and your husband's struggles. I wish I had some words of wisdom for you. Just know that you have a lot of people here to support you... I will be thinking of you and your family and sending love and positivity your way.

Callie - You will feel better if you can just start taking steps towards a second opinion. If you feel that even making a phone call to another cancer center is so painful, then ask someone to make that phone call for you and for your husband! When my son was first diagnosed, I cried so much I could not be coherent on the phone. I had to ask someone to do it for me when I needed to get an earlier appointment for him. About that "25% chance of the cancer not coming back", seems to me that ANY chance at all at removing the cancer is better than NO chance. Whatever happens with the 2nd opinion or 3rd, if need be, you will be glad you did everything possible to fight this horrible disease! Also please get some help for you so that you will be able to function for your husband. You can do it!

Hi there - everyone here has given you good advice. A second opinion is a good idea at a different ccc, as for choices... I'd definitely do the surgery - its a numbers game but 25% still beats 5%, or 0% - and they can wave numbers at you all they want they don't know. Hugs... I'm sorry about the outcome of the biopsy, hugs and prayers to you!

Callie,
Kris's team did not tell us the odds and we did not ask. They just told us that this was the only way to attempt a cure. So at least his tumour was still curable. They were not talking palliative care. Radiation to the same site was not an option.
In this land of free health care we then opted to have the surgery done privately. There was a 6 week wait in the public system which was unacceptable to us. Honestly Callie , I would get this done ASAP.
Evn at our follow ups post surgery there has been no mention of time frames and survival. Just that this option is only offered to those they think will do well.
Take one day at a time. You will get through this.
Tammy

Callie,

My heart breaks for you, your husband, and your children. It's so hard not to cry in front of them and they probably can't comprehend the extent of what is happening to their Dad. I know you have a lot on your plate...way too much. Maybe you can get help from any family that is nearby or friends to take the kids for a while so you can get things in order and have an all-out screaming-crying-swearing fit if need be. I know you mentioned that Don's family isn't nearby. Has anyone offered to come down to help you out? Call on people for favors. They often want to help, but sometimes need to be given specific tasks to do. Just tell them what you need, no matter how big or small and someone will likely come through.

I wish for you the strength to get through each hour or each day and just do the next right thing...one foot in front of the other. I wish the same for Don, who must be terrified!

Here's to hoping for a cure and getting on the way to a new normal life where you can all live as a loving family. Life is NOT fair and I think that some of us get dealt a really crappy hand. I will never understand it, as many of us won't.

You and your family will be in my thoughts. Please keep us posted as you are able.

Big hugs to you and the kids!
Kerri