Wellness

[mistriTsquirrel]

On 3/31/2014 lolakimono said:

Mistri,

In your father's case, it could be that it's not cancer in his brain, but rather the "brain fog" that one experiences during treatment.

Did you check into hospice?

I don't think it's brain fog, lola. His chemo ended almost a month ago, and he just started this steep slide a few days ago. His cough is also much, much worse...and gets worse when he eats...and he's started having pain in his femur. He can't walk from the couch to the kitchen without being out of breath. His balance has now become so bad that he can no longer safely walk without help. His signature looks like the squiggly lines that a polygraph machine produces...there are no recognizable letters anymore. Today he was not able to feed himself; my mom fed him like you would feed an infant baby food. When I went to hug him goodnight (we were both standing), he didn't extend his arms. I put my arms around him and he began to fall into me. His speech is slurred at times. He couldn't hold the phone up to his ear long enough to listen to my brother when my brother called, but when he dropped the receiver, he didn't even realize he'd done so...he just kept holding his clenched hand up next to his ear, like nothing had happened.

I asked him today what he wanted to do when my mom and I need more help caring for him...I asked him if he wanted a nurse to come to the house or if he wanted to go to a place to stay and get care. He said, "I don't know." It was very clear that he didn't want to talk about it, and he looked upset. I told him I just wanted to know what he wanted, so that we could make decisions based on what he wants, and I hugged him. I think it hurt him when I asked that, but I'm afraid of waiting and having us make decisions blindly without being sure of what he would want. I think it would be easier on him to stay in his home. As his brain becomes more and more affected, I can only imagine that changing his environment will be extremely stressful for him and cause him fear. I'm unsure as to whether or not my mom can handle the stress of this situation, and having him at home with her while he is so ill...but the man has a right to die in his home if he wants to. I told her I will move in with them for awhile and we will take care of him, along with a nurse from hospice. It looks like I'm going to have to finish out the work week this week, but I'll just have to go over there when I'm not working and let her sleep, shower, go out, or whatever she needs/wants to do. Ideally, I'd like to work weekend nights and continue to bring in some income, but we'll see what happens.

My parents have an appointment Wednesday with my dad's chemo oncologist. I asked my mom to call and leave a message for the oncologist ahead of time, so that he would know to bring up the topic of in-home care with my dad...so that none of us would be "the bad guy." She didn't do it. I may have to call and leave a message there myself. I also plan on making some phone calls to find out where we can rent a wheelchair and things like that, and how much of the cost Medicare covers.

[mistriTsquirrel]

On 3/31/2014 lolakimono said:

On 3/30/2014 akaburtonfan said: Can someone tell me what an endoscopy is like? I should probably have one but (as stupid as it sounds) i have a fear of getting it done.

I had one done earlier this year. It's easy peasy, and others have said, it's much better than a colonoscopy! It's also very fast.

Yes, please don't be afraid of the endoscopy, akaburtonfan. They give you a sedative, the scope itself takes 15 minutes, and you wake up and have a friend or family member drive you home (since you'll still have sedative in your system).

I had a cardiac catheterization and ablation under sedation (yes, I'm aware that I have a way with rhyme ), and I don't remember the procedure at all...even though it took almost 6 hours!!

[Bunnies]

This is just such a terrible disease. My husband was diagnosed with it way too late. He experienced an inability to swallow. Undoubtedly the cancer was present a long time before it began to manifest itself. He tolerated chemotherapy well. Likewise radiation, although he had some burns on his chest. He had surgery to remove the diseased esophagus. All seemed to go well until the very end of surgery when he experienced a severe stroke. He passed away three days after the surgery. So his cause of death is not listed as esophageal cancer. It is such an insidious disease, one that I really had never even heard of. From diagnosis to death was only about 6 months. He had a stressful job and ate Rolaids a lot over the years. He was also a smoker. I know both of those can be contributors. Yes, be aware of esophageal cancer and do a lot of reading about it. It seems as if I hear about someone having it more and more. To my sweet husband, rest in peace. I miss you more every day.

[hckynut]

On 4/1/2014 BUNNIESGALORE said:

This is just such a terrible disease. My husband was diagnosed with it way too late. He experienced an inability to swallow. Undoubtedly the cancer was present a long time before it began to manifest itself. He tolerated chemotherapy well. Likewise radiation, although he had some burns on his chest. He had surgery to remove the diseased esophagus. All seemed to go well until the very end of surgery when he experienced a severe stroke. He passed away three days after the surgery. So his cause of death is not listed as esophageal cancer. It is such an insidious disease, one that I really had never even heard of. From diagnosis to death was only about 6 months. He had a stressful job and ate Rolaids a lot over the years. He was also a smoker. I know both of those can be contributors. Yes, be aware of esophageal cancer and do a lot of reading about it. It seems as if I hear about someone having it more and more. To my sweet husband, rest in peace. I miss you more every day.

BUNNIESGALORE

I am sorry to hear about the death of your husband and his fight with this terrible disease. It is sad to think that a persons lack of knowledge of this disease just may have been the difference in each and every situation similar to yours. Information about this disease has been around for several decades now for those health conscious enough to look for it.

My brother-in-law was diagnosed with this in 1988 and his original doctor told him to "get your things in order". Fortunately my sisters was still alive and she was able to get her Oncologist to take my BIL as a patient even though he was not taking new patients at that time. My sister was battling liver cancer at the time and died of it in 1989.

This doctor sent my BIL to a surgeon that said he had done surgery as a possible solution to his Esophageal Cancer. He also introduced my BIL to another of his patients that had this surgery and was 3 years post operation and doing very well.

My BIL had this surgery and lived 18 more years because of it. He was able to see more great-grandchildren born and many other things he would never enjoyed had he went with the prognosis from the original doctor.

I feel it is up to people like yourself/myself and "lolakimono" to pass on this information to others and let them know that one does not need to have symptoms to be suffering from what could possible turn into Esophageal Cancer, and how important it is for everyone to get an Endoscopy, now rather than later.

Our society now is full of stress and bad eating habits and I hear daily from some that "it must have been something I ate" as their self diagnosis to heartburn or other internal stomach issues or a sore throat. Sure, some can overcomes simple problems with chewing or drinking certain "remedies" for upset stomach, but for some it is only treating a symptom and that has nothing to do with the true source of their problems.

Like DVT, another deadly disease that many have never heard of, people like myself and others that do know what it is, should feel it is their duty to pass this on to others via forums such as this or even getting on a soapbox(which I have done with many of my hockey players in my adult league)and yell it out if need be.

It is a shame anyone dies of a cancerous disease that is among the most preventable ones that exist because of lack of knowledge of them. Those of use that know about these things and care about others should feel compelled to tell others, even those that are asymptomatic, as was I, about Barrett's Esophagus and this deadly cancer.

[lolakimono]

Thanks to everyone who has responded.

The heartburn conundrum is problematic. Here is the situation. When you feel the "burn" you take an OTC acid reducer or antacid. The "burn" goes away temporarily, but it is like hearing a smoke detector beeping and instead of recognizing the alarm, you remove the batteries to stop hearing the chirps. No one is supposed to be on those medications for more than two weeks at a time, and so as the symptoms are "controlled", the cancer is silently growing until it's at a stage where the prognosis is terminal.

Please do whatever you can to reduce the acid in your diet, get regular checkups, and find a way to heal from within if you are dealing with ulcers, Barrett's esophagus, or reflux.

[Bird]

My bio father died from it in the 60's. It was horrible. The treatment was crude and he had a bad doctor. Things were so different then. You all take good care of yourselves! - Bird

[jlkz]

MistriTsquirrel: some of the symptoms your dad is having reminds me of the last 6 weeks of my dad's life. One day he couldn't stand, saw imagined flying bugs and reacted violently to the antipsychotic drugs administered once we got him into the hospital. Three days later the internist assigned his case told me I should be looking into a nursing home for him and not the assisted living facility I was pursuing. When I told the MD that a few days ago my dad was living alone, writing checks to pay bills and driving, he could hardly believe it. Dad's mind went very quickly over the next few days. He never walked again and the vital signs deteriorated rapidly. He was gone 6 weeks after he said he couldn't walk. The diagnosis was Lewy Body Syndrome, disease which strikes a relatively few men: It's a combination of Parkinson's and an aggressive, quickly debilitating type of dementia (Lewy Body refers to the type of bodies found in their brain ). Dad was in hospice for 2.5 days and escalating amounts of morphine to dull the pain of what I assume was progressive cancer. It's very sad that anyone should have to go through similar experiences. Much peace and comfort to your dad and to all those around him. Hospice is so much better than hospital at this point: the care and attention given to patient and family is unbelievable. I admire hospice caregivers and pray for their well being.

[nagrom]

My son's fil went to the doctor with symptoms. Everyone thought it was esophageal cancer but it was not. He has adnoid cancer. The plan is to remove his teeth and do chemo and radiation. On Friday he had all his teeth pulled. Once his mouth heals enough he will begin the chemo and radiation. This was something I never heard of before. We have no prognosis yet. Everyone is scared.

[lolakimono]

On 5/10/2014 nagrom said:

He has adnoid cancer. On Friday he had all his teeth pulled. Once his mouth heals enough he will begin the chemo and radiation.

I'm sorry to hear this. I've never heard of anyone with cancer of the adenoids. Did he have a lot of problems with his tonsils/sinuses over the years?

Did they say why he needs to pull all of the teeth? How horrible!

[nagrom]

The Bird, I think they pulled his teeth as the radiation would effect his them. The chemo therapy may also open the door for weakened immune system and infection.I do not know if file had any sinus problems. He lives in Finland so the care may differ in foreign countries too.

On another note my husband has reoccurring bladder cancer. It appears to be in remission but will know after June 2nd look see. Then he needs to have four teeth pulled before the doctors can do a TKR. Hubby questioned why remove these capped teeth. He was told that they cannot fill a capped tooth and the remaining part of tooth left would turn to mush. He had chemo in the past and may have contributed to this. It seems doctor want to eliminate any possible infection as it would ruin a TKR. Cancer patients may be more susceptible to infections.