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BeckyP
Posts: 1
Joined: Aug 2013

My mom was first diagnosed with adenoid cystic carcinoma in 1990. I was 6. I had no idea what was going on. I don't even have any memories of it, aside from one of my teacher asking after Mom. She had surgery to remove most of her palate, had some radiation, and came home. I wasn't actually even aware that she had had cancer till I was embarrassingly far into my teens. My parents aren't great at sharing.

In 2004, I think it was, the cancer was back. Several small tumors in the lungs and one on her optic nerve. Lung tumors were of little concern, apparently. So treatment was "delayed" till science got better. Optic nerve tumor was attacked with CyberKnife. But she has since lost complete use of that eye. Her face has been deteriorating - both the nerves and the bone - for the past few years and she looks nothing like herself. She has a very hard time speaking and eating because of slackness in her face and because her breath cannot be directed the same way due to the surgery. But she has been very healthy. All the way till last September. She developed what turned out to be an infection in her brain (so much bone has been eaten by tumor that there is very little barrier between sinus and brain). After aggressive IV treatment, we brought her home, set up hospice, and expected the worst. But she recovered. About 80%. She spent several months on decadron (to treat the swelling caused by the infection and then weaning slowly because it is not a fun process), which left her fairly weak. But she and my dad were planning a walking tour in England, and they were taking long walks several times a week. and then BANG she was back in the hospital. This time, pretty sure, based on MRIs, it is the tumor growth. She was suddenly paralyzed on the right side and could not empty her bladder. She had a catheter put in. She and my dad talked about it and decided no treatment, just hospice. So she is home again. She came back in an ambulance on July 11, hospice brought a hospital bed, commode, wheelchair, etc. We expected the end to come within weeks, maybe a couple of months. And then, again, she began to get stronger. She has regained a degree of control over both her arm and her leg that were paralyzed.The catheter was removed and she can empty her bladder and bowels (yay for lifting from bed to commode and back again). She even walked around the house once today, leaning heavily on my dad. She slept in her bed with my dad last night for the first time since coming home, and that went well. But she has been taking some more oxycodone. She claims not to feel pain, but she will grip her head sometimes. And she had been having spasms in the paralyzed leg that the opiates control. So I have no idea if she is really improving or just retraining some nerves or what.

My family has never been affectionate. My parents were always supportive and I have not been neglected in any real sense. But I am an emotionally-driven person, so it's been tough for me to have parents who are not outwardly loving. I keep telling my mom I love her (when I say goodnight, leave to go home for a night, etc.), hoping and praying that I will get to hear at least once before she is gone forever that she loves me. But nothing yet.

I don't really know how to handle any of this. I have a fantastically supportive husband, a tight-knit group of friends, a strong church community, and a deep faith in God. So I am coping. But I hate not knowing how or when this will end.

This post seems to have lost anything resembling cohesion. No real sense or purpose to it. But now you know my story. So this is me. Hi!

Ladylacy
Posts: 457
Joined: Apr 2012

So sorry to hear about your mother.  I know how hard it is to watch someone you love with cancer.  My husband has terminal cancer because he elected after 35 rounds of radiation, chemo and surgery for laryngeal cancer and then another 35 rounds of radiation and 7 chemo for a second primary at the cervical of his esophagus then in February 2013 a diagnosis of a reoccurrence at the cervical of his esophagus and spread to his right lung to stop all treatment.

My mother, even though we know she loved us, never could tell us (my siblings) that she loved us.  Even during her last 2 years when she lived with me, she couldn't tell me she loved me.  Her parents never told her and her siblings that either.  I used to try to get her to say it, and you know she finally did the night she went into a coma and never woke up.  She was 9 days short of her 85th birthday when I told her good night and that I loved her.  She finally thank me and my husband for all we did for her and said she loved us.  

I always tell my sons that I love them but for some people, especially if they were never told that, it is hard for them to say it.  And as far as your mother and her health, it is her decision apparently to keep the worse from you.  My husband doesn't tell our grown sons how bad he feels because he doesn't want them to worry.  In fact he doesn't even really tell me.  I just see it in his face and will ask him how he is feeling and if he having a lot of pain.  He always tells me no, but his face says yes.  And when he goes to the doctor, he is the same way and I have to speak up and say that's not true.  

Wishing you and your family the best -- Sharon

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