Stephany,

I am not as strong as I sound. Honestly, I cry at the drop of a pin, but never in front of him. I do things that are not really good for me sometimes. I have tried numerous avenues to dull the pain and some work and some don't and let's just hope that none of them ever get me arrested :-).

The reality in my life is that I have had to learn when to back off myself. I am the proud caregiver when I am busy doing the giving. The busier I am the better off I am but when he stretches his wings and flies, I flop and hit the ground hard most of the time.

He says that he can do things himself so I go over to a friends for a chat. He swears he called my cellphone 20 times but I only heard it ring once and I answered it right away. When I got home I was in big trouble. He didn't know when to take his medication, how much, under what circumstances etc. and he wouldn't ask me on the phone for some reason.

It is weird because he wants to do this and that but he doesn't want me to leave the house. It is frustrating at the least and I am still learning how to cope with all of this.

Everyday there is some new surprise. For example,

Yesterday I had to go to the wake of a friends husband. He is dead because he had been having heart problems and when he was in the hospital a couple of weeks ago he checked himself out AMA. I watched my friend as she choked back her tears and I kept thinking about how angry she must be with him for leaving her behind. She is a strong woman but she was also very dependant on him and now... she is alone. This is why I raise hell because I don't know if I could live after something like that.

As for my husband today..... We begin week 3 today. He will have his 10/35 rad tx. He has had the side effects fast and furious from the beginning. He has 3 more chemo txs to go through and 25 more radiation. We are really just getting started. I told my husband just before the txs started that I could deal with his death if that is what happens so long as I know he fought to live with every amount of everything he had but that I do not think I could go on if he gave up. He promised that he would fight and that is what I hang onto.

We found a lump first. By the time he had the CAT scan there were 2. Finally the docs located the primary tumor on the base of his tongue on the left side. I have watched over the last 3 months the lumps grow. In the beginning I could only feel one and now they are both very pronounced. I can even see them from accross the room. Hopefully soon I will not be able to see them or feel them at all.

He is in constant pain and I call doctors all of the time. He has had fever for 7 days but the docs say his count is good.

Gary, I have been cursed at, blamed, etc. by him. I love him all the same. But when things get that tough I call my daughters or friends and tell them they have to come over because I have to leave for a while. In a way it is not fair because we always used to be able to fight before and I could yell back and say what I felt. Now I cannot do that anymore, so go to my friends and bitch at them for a while. They are really good about just letting me get it off of my chest. Then I move on to the next challenge.

I do not think that one role in this is harder than the other, I just believe that we each have our demons to struggle with and I am certain that emotional pain can be equally as severe as the physical pain. The biggest difference is that the only pain medications for emotional pain are not something that does any good and can actually complicate things more. I know I have tried and I have paid dearly for the experience.

The bulk of my strength comes from my friends and family. The people who are always there when I get frustrated and angry and sad and hopeless. I love my husband more than life and I know somewhere in me I can make it through this the same as I know that he can so long as we do this thing together. But do not think that I am not full of doubt because it is the biggest demon I have to fight and it is constant.

Stephany, you might also try reading these posts to your mother. I read them to my husband because he doesn't go on this site himself. I try to get him to but he won't so I read it to him. I am not sure if he is always listening but it makes me feel better to know that I at least gave him the information and that the words he hears are not mine.

You know your mother better than anyone, you have known her all of your life. You must always do what you think is best, but do not give up if you feel in your heart that it is right. Like I said, there will come a day when it will be easy to recognize and admit those things that cannot be seen now.

I still remember the radiation doctor telling my husband that this is very curable "If" he survives the treatments. It was not what we wanted to hear but I am understanding it more and more each day.

I do not know what is going to happen but I do my best to take things one day at a time.

We have 2 sons that are 8 and 10 and I go to Law School. My husband comes with me to school each day and lays down in the car while I go to class and then we go to the hospital for his txs. I know he is not comfortable in the car but he does it for me because he doesn't want me to have to quit school. So I know that he loves me and I am grateful for his sacrifices and I can only do the best I can to make his life as comfortable as possible. Hopefully, in the end, the light at the end of our tunnel will be blinding.

Good Luck to you!!
Cindy

CIndy,

I sent you a private message. I will write more here later. I have to run to my office. Im late :-(

Stephany

Cindy,
I think what the doctor meant by his remark is that statistically speaking, patients who complete the entire treatment protocol have a much better chance of survival - at least that's what my oncologist told me. Since I am an "insider" he had serious doubts that I would make it through treatment but I surprised him (myself too, a little bit, but I was bound and determined).

My wife actually got to the point of having discussions with a divorce attorney. We are stronger and closer than ever now, being gifted with the "miracle of reconciliation".

It's good that you have places to vent. Find more if you can. Don't put too much burden in one place - spread it out. Talk to your hospital social worker for additional support groups and resources. Ask for respite care from friends and family so you can have time for yourself. I had several drivers to take me the 60 miles to RT each day and that helped my wife a lot. And we're here too! He will probably get even more miserable later on as he's gets more beat up from the treatment. Roll with it as best you can - it will pass and hopefully he too be making amends to you for the next several years.

Gary, I am so happy to hear that you have worked out your problems with your wife. That really makes me happy. You are so kind and caring to so many people in here with your support that is nice to know you still have your wife's love and support.

I actually called Wellness Support today and was told they will call me for an interview. what is that all about? You have to be approved to attend the wellness support groups. I am willing to try anything to get through this. I really want my mom to go for support, but she said no and my dad said no as well.

Cindy, Keep up the good work in law school. I sent you a Private message about that. That is so wonderful that your husband is supportive of you finishing school with all that he is going through. That is truly unselfish and caring.

Hang in there Cindy and I am happy for you Gary regarding your wife.

God Bless
Stephany

Going to be out of touch for a couple of days. Harry went to the hospital last night. Some kind of infection. I am on my way back to the hospital now. Now I am truly scared.

Talk to you soon.

Cindy

Hi Stephany,
After my surgery and during the toughest days of radiation, I had trouble being a patient. I have always been the caretaker for my family and to lose that esteemed role was very painful for me, I felt like I was letting them down and that they would never think of me the same again. It made me feel like a burden to my family. My older girls (at the time 19, 21 and 22) had to deal with it and they did it very matter of factly. They took control and let me know that they were taking control. All out of love and the true desire to make it easier for me. They forced me to do the right thing, just as I had done with them many times while they were growing up. It allowed me to get healthier quicker and for my husband to be free to tend to our younger ones that needed that day to day care. I fought it at first and resented being babied, but they left me no choice. I was not happy with them at first but now have such respect for them and their strength to do what was right, even if it meant standing up against the allmighty mom! I realize now that it was selfish of me to worry about my control issues when it was hurting my children so much to see me hurting and suffering with the treatments. Once I let go and gave up that control, the difference in my children was wonderful, life became relatively normal again if that makes any sense at all.
In your situation and knowing what I know now, I would be willing to stand up to my mother and tell her that her way of doing things is affecting everyone around her also. Not to mention that it's affecting her healing process. Be blunt with her and tell her how it makes you feel, it may help. You're in my prayers.
Minnie

Stephany, I am not a doctor, but in my opinion, it is well past time for it to be "necessary" for your Mom to have a peg inserted. The procedure is not a big deal and it will give her the needed nutrition and hydration. I had mine put in just prior to my second chemo and 16th. rad treatment. I kept it 5 months after treatment ended and used it for food and meds. It was a very important part of my treatment. If your mother won't listen to you, ask the doctor to insist she have it done. This should already be happening. My doctors told me that they would force me to have it installed if my weight continued to go down. I had it put in and was much happier from that point on. Also, removal is no big deal. They took it out before I even knew it was gone. So there should be no fear element involved. Your mom is hurting her own recovery.

Also, the "magic mouthwash" was mentioned. It is a concoction used to deaden oral pain. I used it sometimes before I ate, when I was first starting back on solid foods. It worked well for me. It might help your mom.

I don't remember where your mom is being treated. Is she at a major cancer center? If not, she should get an opinion at a cancer center. They have a lot of experience in treating this disease. Hope all goes well for you and your family.

Stepheny, I totally agree with Kirk Georgia that your mom is doing damage to her body with such a tremendous drop in weight. I wonder why her doctors didn't do something to stop the situation from getting worse. When I lost over 10 pounds, my doctor already suggested putting a feeding tube. When I refused, he said he would give me two days more and see if I could eat or not. If not, he would order the feeding tube, whether I agreed or not. I ended up with no tube because I managed to drink and eat to the satisfaction of my doctor. Sometimes, when the moment is critical, the patient should not be given the freedom of choice. In your mom's case, I think she has no choice but to get the feeding tube asap.

Karen.

CIndy, How is your husband doing? So sorry to hear he went in the hospital.

Minnie, Thank you again for the advice. I just got home and it is late and I will write more tomorrow but wanted to briefly respond. Thank you for encouraging me to stand up to my mom and for sharing your story. Wow, you must be busy with all your children over there! ;-) How many kids do you have? I am happy to hear things worked out for you. My mom is similar to you in that she was the caretaker and always in control. I imagine it is hard for her to let go of that, and I wont ask her to.

Kirk Georgia, thank you also for the response. What is the "magic mouthwash"??? I will suggest that to my mom. My mom is being treated now (as of a week ago) By a pain management medical oncologist that sees twice a week, and she sees her surgeon once a month. Thats all. No, she is not at a major cancer center. I will suggest that to my family. Thank you for the advice.
My mom is stubborn about the feeding tube. My goodness, she lost more than half her body weight and she still wont do it. I will try to suggest it again. Thanks. I am glad it worked for you.

I will continue my prayers for all of you. I really do appreciate your support.
Love
Stephany

Hi Stephany,

He has neutropenia. Neutrophil count down to 44 and fever to 102. He is very sick and the doctors are trying to find out what bug has gotten hold of him. The cultures should tell us today.

Remember earlier when we talk about crying and such? Well that seems to be all I do now. Not in front of him, of course, but when I leave the hospital and when I am alone.

Sort of like now. Yesterday I kept having memories of every good moment we have ever had. Places we have gone etc. And I kept praying that we will still get a chance to go to the places we have always wanted to go.

I have to go now.

Cindy