Back in March, 2006 my mother was diagnosed with oral cancer T4. The tumors are located in multiple places including;

- Roof of her mouth
- Right jaw bone (at the jaw joint)
- Two masses on her left lung (assumed tumors)
- Right side of neck

My mother, who is now 71, chose to do nothing.

This decision was based on choosing quality of life versus extending her life. She continues to live alone in her apartment (my dad passed away several years ago) . She still drives to the local food store and church 3 or 4 times a week.

Its been 9 months and counting... Since she refused even a biopsy procedure, we aren't positive what type of cancer cell she has.

Her symptoms have gotten progressively worse. At this point, she has increasing pain in her right ear, cannot chew food with much success because her right jaw hurts. In addition, when she drinks fluids, some of the fluid comes out her nose when she attempts to swallow.

Her weight is starting to drop... Prior to the cancer, she was 97 pounds (height is 4' 10").

She is now down to 88 pounds.

Is there anyone out here that knows someone who went down this same path? Most of the patients the visiting nurse sees have chosen to go for treatments. My mom is not sure what is coming next... The end is certainly much closer than the beginning (9 months ago).

Any suggestions/warnings are certainly welcome.

Thanks,
Paul

I forgot to mention my mom is taking motrin only. The visiting nurse is trying to talk her into taking a stronger pain meds...

My mom claims the visiting nurse, her family doctor and daughter (who is also a doctor) are just a bunch of drug pushers...

She is refusing to take the prescription pain meds because it will stop her from driving....

I would highly recommend that you get hooked up with the local hospice people. This is certainly going to degenerate to a point where her resistance to pain meds is going to go away. Driving is something that you should monitor carefully since she may endanger herself and others as this disease further impares her abilities. The onset of those impairments may occur suddenly, and given her desire to go to church so frequently, she may be driven to take herself there even with compromised abiities to do so. But the hospice people can prepare you for all the events that are going to transpire and have the entire family prepared for what is going to be needed and what to expect.

If she is not eating and dropping weight rapidly, various medical conditions could actually accelerate her death before the cancer. This may or may not be her desire. I suggest that you email Gary on this board who has been through training in much of this including hospice care, and who will be a source of information for you beyond what most of us here can offer. We have few posters that choose to let the disease run its course.

Hi Paul,
I work in hospice so I have seen many people make the same choice that your mom has in refusing treatment. It sounds like she has been active, driving, getting out, going to her church, and doing the things that are important to her over the last 9 months. That's the good news, she's had a relatively good quality of life during this.

However, it's not an all or nothing situation. Most of our patients who have refused treatment for the cancer, still accept treatment to control pain and other symptoms. Is there anyone she would talk to about why she is putting those 2 separate issues together?

Some drugs will prevent her from driving and some won't, it's a matter of finding the right dose and the right medication for her. She's very tiny so that needs to be considered in those decisions. There is prescription strength aleve (naproxen) that comes in liquid form if that's easier for her to swallow and it's stronger than the over the counter motrin. Has she had a bad experience with pain medication in the past? What is she really afraid of?

It's not unusual for parents to not want to discuss things with their adult children even when one is a doctor. Apparently we never grow up. I have the same issue with my 83 year old mother who tells me all her symptoms but never accepts any of my suggestions to resolve them.

Would she talk to a chaplain, her minister or a social worker about her feelings? Who does she trust at this point? I think you need to find out what your mom thinks is going to happen at this point and go from there. Does she understand that the cancer is progressing?

Family conferences can also be useful - with a neutral objective person to facilitate - to come to a resolution. She has the right to refuse any and all treatment, but the flip side of that is that pain will increase, her ability to eat will deteriorate, and those are quality of life issues too. Also she has a family who obviously love her and your feelings need to be expressed and considered. Have you told her how hard it is to watch her be in pain when she could take medication to alleviate that?

As for the driving, that's the hardest thing for independent people to give up. The issue there is not only her own safety if she is driving with the distraction of pain but everyone else on the road. Are there people who are able and willing to drive her to the places she wants to go? Does she live near near all of you?

Many people express their fears through pat answers like everyone is a drug pusher. She knows they aren't but it sounds good and shuts down the conversation. Is she on a hospice program? There are several good programs in the Philadelphia area that I'll be happy to tell you about in a private email.

I'm sorry that you are all going through this and let us know how she is doing.
Regards JoAnne

Dear Paul,

My dear Aunt Rosemary chose to do nothing after finding out that she was suffering from a recurrence of her cancer. That was back at the end of July. The one thing I can tell you for sure is that her condition may change drastically from one day to the next at some point and for that reason, I strongly suggest that you take Brian's advice and contact a hospice service immediately. My Aunt was surviving pain-wise on Vicodin for a long time. She was visiting our Grandmother, was out in her tremendous football field of a yard with her dogs, and then one day, the pain became overwhelming, extreme nausea and gagging prevented her from holding anything down- even her liquid nutrition, and it has been downhill all the way since then. Please be prepared! Despite their faith, their inner strength and their will- things will definitely change with no treatment. She will need pain meds, she will need help to do everything and eventually she will need to be monitored. Contact Gary privately for an understanding of what is to be expected. He can give you a lot of resource reading material that will help you to understand her journey.

The hardest part for us is understanding, living with and respecting this choice. I will pray for your strength and your ability to continue to love her even though you may disagree with her. Believe me, sometimes it gets hard, really hard.

May God be with you, your Mom and your family.

Hugs,
Lisa

Brian,

Kudos to you my friend for starting this wonderful site. I have read dozens of posts.


Joanne,

Thank you for your lengthy email response. I have read it several times and am still amazed that a total stranger would spend so much time and effort to help me out...


Eileen (co-worker and cancer free survivor),

Thank you for letting me know about this board. I appreciate your input and strong conviction.

Lisa,

Thank you for your input... Hug right back at ya!!!


Friends,

My mom is taking Vicodin every 4 to 5 hours in addition to a mouthwash/spray solution that numbs her mouth and throat. She is still sleeping through the night.

She does have a visiting nurse and hospice health care giver coming one day per week. I forgot to mention that in my original post. These visits have been occurring since she was diagnosed back in March. Just last week, the visiting nurse had to replace the "death pack" in the fridge as my mother refers to it because the expire date had passed. She jokes that she outlasted the "death pack"...

We had her over the house on Tuesday for the holiday steak cookout (family tradition since 1966). She was smiling all night as she watched her nine grand kids open up their gifts. Despite knowing that this would mostly likely be her last christmas, she seemed content and thrilled throughout the party.

In addition, she had the added pleasure of having all five of her kids together for christmas. (Last time was 1996). The reasons behind that 10 year gap would qualify me for another type of message board (;-).

I will keep you posted on her progress.

Thanks again,
Paul

Paul,

Thank you for keeping us posted. I am so sorry to hear of your Mothers choice.

I am praying for her and all five of you. This is so very hard for your family. I am so glad you were all able to be together this year for Christmas.

take care,
Diane

Hi Paul,

What a great Christmas present for your Mom and your family - the gift of being together. I am also one of 5 siblings in a delightfully dysfunctional family and I suspect there's lots of stories we could all share. We usually get 4 of us but then there's that other one...

I'll bet she loved outliving the "death pack" in the fridge - way to go! She's got spirit your Mom. It also shows the hospice staff is paying attention to the small details so that's a good thing. As her condition changes, there are people that are monitoring her and that increases the likelihood that things will get dealt with as they develop. Take it one day at a time and enjoy those good ones.

Happy New Year,
Regards JoAnne

Hello everyone...

I figured that I would give you an update on my mom's condition. Its been almost 11 months since she was diagnosed.

The visiting nurse came on Thursday and contacted my sister (the doctor). She told my sister that mom's pain has increased enough that she is recommending she take two vicodins (5 mg) every 4 hours. Then, in between, she should take the Motrin. The nurse also told my sister that she believes that the time for 24X7 care is rapidly approaching.

On Friday, I took the day off and spent it with her. We talked extensively about her current condition.

The tumors have grown in size as follows:

The tumor near her right ear is pushing her ear out away from the side of her head. This same tumor is pushing its way down the side of her face (just in front of her ear).

A second tumor (or just a tentacle of the ear tumor) is pushing its way down from just under her right eye down to the side of her mouth.

Yet another tumor (or tentacle) is firmly attached to her right jaw hinge and is significantly impeding her ability to chew.

Her food intake is now 100% soft foods and soups. Although, she still is able to eat her Bassetts Vanilla butterscotch ice cream!!!

To recap the current impact of the cancer:

1) Ear pain
2) Difficulty chewing
3) Wakes up every morning with slobber on her pillow case.
4) Complains that she hears an echo when she ever she talks.

I will keep you posted.

Paul

Well, she may just take the prize for the toughest 71 yr. female old I ever heard about. HOpe you inherited a good share of her genes. While I know this is truly hard on you, Hopefully you can figure out a way to honor her wishes to be at home for as long as possible and keep her pain free at the same time. When John's recurrance presented, there were 2 things his Doc told me [that I did not want to hear at the time, but now appreciate being forewarned about] #1. Dying from Head and neck cancer is NOT a pretty sight. #2. Pain management becomes all important [for the patient's sake and the family's] and there needs to be good communication among everyone involved. Sending prayers to your family. Amy in the Ozarks

24/7 care doesn't necessarily mean in a hospital or professional nursing unit but it does mean that caregivers must be there around the clock in case she needs to get up in the middle of the night, manage her meds and feeding schedules. She will be too weak and too heavily medicated to risk her getting out of bed unassisted. The hospice people will train care givers and provide some limited respite care, bathing, provide equipment; commodes, walkers, etc., nursing at home checkins, etc. I have walked this road with both my stepmother and father - even had the same hospice nurse both times. Both passed away in their own beds, at home. It was very difficult but being able to honor their wishes was a profoundly spiritual experience for me.

Paul,

My prayers are with you and your Mom. Both of you are very brave.

Tim

As the end nears, I feel more and more compelled that when she is nearing her death, I will stay with her 24X7 until she takes her final breath. I have 5 weeks worth of vacation and personal time accrued at work. I really do not want her to go through this alone. She was there for my dad... I feel as though I need to be there for her...


Gary,

Thank you for reminding me that the stronger meds make it mandatory to have 24X7 care. I need to keep an eye on that issue as it progresses.


Amy,

It sure isn't pretty... And, pain control is soooooooooo critical... I look at my mom and think oh my god, how much worse is it going to get??? Sadly, I believe that the worst is yet to come.


Tim,

Thank you for your support.

Hi Paul,

I am just getting back from our long delayed trip and catching up with your post about your Mom. It sounds like things are progressing as expected. The timing issue is always difficult to predict. Layering the vicodin with motrin is good and the hospice staff have special training in pain managment so they will continue to have ideas for you.

One of the first sweets that Jack was able to taste after his treatments was Bassett's ice cream. He likes the vanilla butterscoth the best too. We went on their website to find out the local stores that carried it, but we were ready to make the trip to Reading terminal to get it. It's great comfort food, and a Philly special.

Hope things go well for you and your Mom. Just take it one step at a time.

Regards JoAnne

JoAnne,

No need to travel to the reading terminal... McCaffreys market in the Princeton shopping center has it... There is also a McCaffreys market in Yardley but I tend to buy all the butterscotch vanilla they have each week... :-)

Paul

Paul,

I can feel you, man, when you say you will by her side 24x7 until she takes her last breath. My mother was diagnosed terminal with ovarian cancer and the doctors expected a swift but painful 4 weeks or so. I was so fortunate in many was because her journey lasted about 9 months. I took off work and in many ways it was the best 9 months of my life. It's hard to believe it has been over 6 years already but I can feel it as if it were yesterday as I read your post. May your heart be filled with the love of all those here and around you and may you know how blessed your mother is to have you by her side.

Best Wishes,

Ed

Hi Paul, Thanks for the heads up - we're close to a McCaffrey's and I found it there tonight. It's the little things that keep you going...and they have other flavors for me. How's Mom? Regards JoAnne

Ed,

Thanks for the supporting comments.

JoAnne,

Great news on McCaffrey's... I use them in an emergency when the Yardley store is out...

Funny story... Back in January, I got desperate and emailed Bassetts ice cream asking where else I could get moms flavor. I got an email from Mary Bassett who said the Yardley store was scheduled to get 16 pints that Wednesday. I pictured a 75 year old lady whose great, great grandfather started bassetts back in 1861. She was sweet and caring in her response... Although, I half expected Bassetts to send coupons or something since I detailed how my mom had been eating 1/2 pint per day (everyday) for the past 5 years. Even so, I will save that email to remind me of this journey.

Mom is still toughing it out... She is insisting on seeing the ENT doc who originally diagnosed her cancer back in Mar, 2006. I am taking her sometime this week. When I asked her why she is going, she just says she wants him to explain what is going on now, and what is going to happen next. I will report back after this visit...

Thanks,
Paul

Hi Paul,

Great story on Mary Bassett and they really should have sent coupons under these circumstances. Still it was nice that they let you know about the delivery.

It could be that your Mom may also be going back to the ENT because he's familiar to her and he's who she associates with the diagnosis of the cancer. Good luck with the visit and let us know how you make out. Is the increased dose of vicodin helping her?

Regards JoAnne

Hey everyone,

Mom spoke to the ENT (over the phone). He called and finally reached her after several attempted calls were missed.

He explained the reasons why she is having problems drinking fluids such as soda, water and coffee coming up and out he nose. This is really getting frustrating for her (especially with her coffee!!!). The soft pallet tumor is interfering with the nasal passages. He mentioned that she could go see a surgeon he could recommend but that would involve all the same things she already has refused.

She then asked him how much longer does she have. His answer was he didn't know (no surprise).

Both the nurse and hospice caregiver were there today. The nurse called me after and said mom asked the caregiver how quickly she could arrange and get full time care (staying in her apartment).

In addition, mom finally told her downstairs neighbor about the cancer.

I believe mom sees her time living on her own soon coming to an end.

Over the last few weeks, the following changes in her condition have been noted:

1) Weaker leg strength. Difficulty getting in and out of the tub. I am concerned about this but she does have 3 grab bars and a sturdy special seat that stays in the tub (she sits in the chair while taking her bath/shower. I had also installed a 7 foot hose shower head when she moved in 5 years ago.

2) Liquids (water, soda, coffee, milk) come out her nose at almost every sip now. Milk shakes seem to not come back up. This is really starting to get to her.

On a personal note, I came home on Friday from work totally exhausted and feeling horrible. I ended up having the flu and was in bed for 4 straight days. Slamming headache, fever and general body ache. The sad part this was exactly what I needed it!!! No work stress. No mom stress. No kids stress. My family was wonderful... They brought me tea and toast. Glasses of ice water etc (which I lived on along with Nyquil and Sinus meds). I slept... Watched On demand (Sapranos season 5).

Hum... Think I could bottle up this illness again when the Masters golf comes on next month?

Thanks,
Paul

Hello Paul:
You are a good man and I now it must be hard for you to watch her deteriorate. I've lost several freinds and relatives to cancer. Always, towards the end, It became harder for ME to visit them.
Now, at 50, I've joined this club. I'm waiting for dx, but if my GUT feeling is right, I may go the way of your Mom and let it take it's course.I'm prepared to fight, but if mine is to advanced, I will not. To horrifying, and to much to put my family thru, only to suffer and be cut apart,and not have a good quality of life.
I just read all your posts, and your Mom had a year most likely better than if she fought this terrible disease. She may have already passed. Anyway, I had a GOOD LAUGH when she outlived her "Death Pack". My grandfather outlived every DR. that told him he did not have long to live. It's one of my fondest memories of him telling that story many times! If it comes to it, and when I make MY CHOICE, I hope my family understands, especially my "very last choice". Stay stong, PeteyB

Hi Peter,

Please be very careful at making this type of decision. My mom was already in extremely frail condition when she was diagnosed with her T4 cancer.

Prior to the cancer diagnosis, my mom had several problems including: a herniated disk, arthritis throughout her body, protruding hernia (operation didn't work because her thin skin failed to hold the inserted netting). She just went through a carotid artery operation two months before her cancer diagnosis. In addition, she was diagnosed with the early stages of emphysema 2 years ago (50+ years smoker). When she had her operation in Jan of last year, the testing showed two unknown masses on her left lung. Finally, my mom has very little body fat (or muscle for that matter)... Her body was in no shape to endure the procedures. Even if she made it through them, she most likely would need 24X7 care for the duration of her life.

She made this decision based on the following:

1) The doctors told her (including her own daughter) that the cancer would not be cured with the procedures (radiation, surgery etc).
2) Once she started down the proactive road, she would no longer be able to live on her own. Having to give up her independence was paramount to her decision.

There are several folks here on this board that have beaten this horrible disease. Before making the same decision as my mom, you need to communicate with them and understand that you can beat this SOB... That being said, if you choose to go my mom's route, I will be there for you along the way. But, keep in mind I received NO RESPONSES from people that chose to do nothing. That should tell you something... Know that if you choose to do nothing this will kill you. If you fight it with the procedures, you have the chance to post here years down the road that you beat this bastard disease.

Thanks,
Paul

P.S. Mom is continuing her battle. Same status as a few weeks ago.

Hello Paul
Thank You for the advise. I will not make any rash decisions here. I also am getting ahead of myself, as I have not gotten biopsy(tomorrow)and have not been staged.
But I know it is far advanced. I need to see what I'm up against first. Then sleep on it. This could not have come at a worse time. But, then again, it puts your priorities in order real quick, and all those "other problems" seem minute!
THANKS, PeteyB

Paul,

I can not Imagine it was an easy decison for your mom even in her situation ! Hearing that the treaments are going to do a whole lot though really sux, yet the alternative is worse....For some the Quality of live is more then the length. I am sure she has had alot of soul searching . I know I was lucky and didn't need the RAd ...But I can tell you I have always said ( way way before cancer became even close to a reality for me ) ..I wont go through Chemo or RAD ..Makes ya sick ..why do I wanna be sick ..I want a QUALITY of life....And large part of me even know believes it,, But unitl you are faced you dont know...and in my case ...I can't make the decision based on my own thoughts I have 5 young children....As I said Luckily It was even a decision I had to make ..Sounds like your mom has just been through so much ....Just know that She did soul search to make that decision...And I am sure she is more then grateful to have a wonderful and caring son ...I KNOW SHE DEF IS LUCKY ! Best wishes to you and your mom ..I hold you both in my thoughts an Prayers as you continue on .....May each day you find the strength you need to get through it !

Sharlee

Pete, I want to echo what Paul is saying here about making decisions on treatments carefully. My husband was 55 when he was diagnosed in stage 4 last year. He had surgery, chemo and radiation and although the treatments were miserable, he survived it all and he's here to complain about it.

Don't get ahead of the biopsy results because it's a waste of energy. You won't know what you are going to do until you are faced with the facts of the decision. See what they tell you first before you rule anything in or out. Not pursuing treatments has only one possibility so you have to ask yourself what you're really willing to risk.

Regards JoAnne

Update:

Mom is now having trouble swallowing her pain medication (Vicadin). The tumor growing down her throat is getting large enough to impede her ability to swallow any pills. Making it worse is that any liquids she drinks to wash down the pills comes out of her left nostril (significant amount). I am sure this is adding to her frustration when attempting to swallow the meds.

Spoke to the nurse today. She will order mom a liguid form of Vicodin. Increasing the health care visits to 2 hours per day during the week.

Paul - I am so sorry for what your Mom and you are going through. How wonderful that she has you by her side in these ever so difficult days. I know that you must be a great comfort to her. The decision that she made was surely a very difficult but a very courageous one.

JoAnne, I was so glad to see your post about considering all the possibilities. Our circumstances and experiences vary so much. I cannot speak from experience, but when I think about my loved ones and the people I really care about - there is something in me that wants to shout, "never give up, never give up, never give up!" So, Petey - please do consider ALL the possibilities.

Mom got the liquid meds today... That is the good news... The bad news is the liquid meds burn her mouth. This has been one of the long standing side effects she has been dealing with. The list of foods/drinks that irritate the forever open wound in her mouth continues to grow.

She will try to mix it with her ice cream and pudding. If that doesn't work, it may be time for a patch. Although, my mom's thin irish skin won't deal very well with taking off the patches. We shall see...

Paul R,

I dont know that I have any words of comfort during a time like this, all I can say is YOUR MOM IS LUCKY TO HAVE YOU ! and MY HEART AND PRAYERS GO OUT TO BOTH OF YOU AND YOUR FAMILY..I am always here to listen ! As we all are.

Sharlee

Taking the patches off is not a problem, they almost fall off after a few days. I had a bigger problem keeping them on.

It actually felt nice to get the patches off. They kind of itched and I could have a good scratch.

Hi Paul,

I know first hand about that Irish skin, it turns red all by itself for no particular reasons. My husband has very sensitive skin too but did okay with the patch. It wasn't as bad as tape. It does sound like it's time for the patch for your Mom and they'll have her rotate the sites. You shouldn't have any problems getting it off. Sorry to hear that she's getting worse - you hang in there. How are you and your family holding up?

Regards JoAnne

Paul,


Just to let you know you and your mom are in my thoughts today !


Sharlee

A patient of my sister gave her a great suggestion on swallowing the cut in half pills... She said to take the cut pill and rub it against butter. This coats the exposed medicine so that it won't burn her mouth... It also provides lubricant that helps slide the pill down her throat. I told my sister that a sign of a good doctor is they always listen and learn from their patients!!!

On Friday, we met with the hospice folks. Mom is still clinging to her independence. But, she is accepting (actually said she likes it!!!) the hospice health care visits each day. Besides the hospice worker coming each day, the visiting nurse is now stopping by twice per week. I can't thank these people enough...

G T & J,

Thanks for the heads up on the pain patches. Mom is able to control the burn by taking a spoon full of her Bassetts butterscotch vanilla ice cream immediately after swallowing the medication.


Sharlee,

Thank you for your kind words and encouragement... Love your first name... Very pretty...

Thanks,
Paul

Paul, sending you strenght and comfort prayers today and tomorrow. Amy in the Ozarks

Hi Paul,
That's a great idea on the butter and I'm glad to hear that your Mom is still able to have her daily Bassetts. Good luck.
Regards JoAnne

Hi Paul,

We are going through a similar experience with my Mom. She was diagnosed in Sept 03 and since has had radiation and 4 different major surgeries. The doctors have given her 6 months. She did take the PEG - the first one failed after 3 weeks but they were able to place a new one 10 days ago. Good thing because she uses it all the time for nutrition and her meds. Over the last 10 days she has move to the patch for pain meds. Started a 12 mcg/hr and with the most recent one is up to 50 mcg/hr and is taking liquid morphine in the PEG 3-4 times per day for breakthrough pain. We can no longer understand her speech - since my sister and I both live far away, she asked for a fax machine to be able to communicate with us. That is working out well. Technology is keeping me sane. I just don't know what to expect over the months to come. Anyone have any experiences that would like to share? The unknown is so scary. My Mom has been my role model and hero all my life - this is so difficult to go through. Fortunately, I have a job that will allow me to work from anywhere - I suspect that soon, I will be spending more time with my Mom.

Take care and know that you are not alone.

LGH & Paul

Just know that my thoughts and prayers are with both of you and yor families durng these trying times..

Sharlee


Ps thanks Paul..My name would have been Charlie if was a boy , however Mom still wanted to name me that and Gramma was like NO WAY LOL ( god reest her soul !)

LGH & Paul

Just know that my thoughts and prayers are with both of you and yor families durng these trying times..

Sharlee


Ps thanks Paul..My name would have been Charlie if was a boy , however Mom still wanted to name me that and Gramma was like NO WAY LOL ( god reest her soul !)

Dear lgh, Having just dealt with " the last 6 months", which could be 3 months or 12 months, depending on the person, I will share with you whatever you want to know about how to prepare forward. Does your family have Hospice involved yet? If not, it would be a good thing to do. Do you have a "Case manager" in her Insurance program [assuming that she has Ins. other than Medicare] there are many things your family can do to make the inevitable more bearable. The bottom line at this point is to be actively engaged in what is happening from here on out and being prepared to say the important things you want to say. I will answer any questions I can based on our journey- just e-mail me or send me a # where I can call you. This is tough stuff, so don't feel bad about asking for help. Amy in the Ozarks

LGH

My mom is adamant that she will not have any type of feeding tube installed (including a PEG). Her continued wish is to hang on to (now limited) independence as long as she possibly can. Once her pain reaches an unbearable level, she plans on a rapid morphine induced coma followed by a quiet peaceful death.

From everyone I have spoken to (on and off this wonderful site) plus my own personal experiences (dad, a close friend and my mother in law) you should know the following:

The pain control meds of today provide a slow peaceful transition as the body starts to shutdown. I am sure that your biggest concern is that your mother will not suffer. You need to accept this truth (making sure of course that she gets the proper meds)

Hi Paul,

I am glad that you are getting time with your Mom and making those memories. It sounds like hospice is doing a good job of managing her symptoms and I know that her passing will be peaceful when that time comes. Is she still eating her Bassett's?

Regards JoAnne

JoAnne,

Thank you for your warm thoughts and wishes. Yes, mom is still eating her Bassets... Indeed, her intake of the ice cream has increased to almost 1 pint per day. Thankfully, WA-WA decided to carry it again... I now don't have to buy out every pint at McCafferties each week.

Mom is very close to moving onto stronger pain meds.. She is in a precarious quandary right now... The tumor tentacle growing down her throat is getting so big now that swallowing pills is a impossible without them getting stuck. The hospice nurse got everything in liquid form. But unfortunately, the liquid form of these meds burns the heck out of her mouth. She tried the butter method on half a pill. She wasn't happy with this option.

Her first modified method (eating a spoon of ice cream immediately after taking a spoon full of the meds) is not alleviating the burn enough. Next, she tried mixing the meds with the ice cream. Sadly, when she swallows the (partially melted mix) some of it coming out her nose, the vicodin burns her nose (and mouth).

My sister brought mouth spray to num her mouth. But, mom can't open her mouth wide enough to spray in her mouth. Next, my sister filled half teaspoon full of the vicodin in several mini ice cube tray containers. The tray was put in the freezer Friday night. On Saturday night, my mom was going to attempt to eat and swallow the frozen mini vicodin cubes. Sadly, the alcohol in the vicodin wouldn't freeze (ugh...). I guess that is the same alcohol that burns her mouth.

She has zero fat so pain patches will not work properly.

Suppository is yet another option. Mom wasn't keen on that option.

I brought up the idea of getting a PEG telling her that the meds could be administered from the PEG (along with nourishment and fluids). She snapped at my saying that she couldn't live alone once she gets the PEG.

The when to say "enough is enough you can't live along anymore" is sooooooooo hard to determine.

Thanks,
Paul

Hello Paul

WOW! You sure have your hands full. But you are honoring her last wishes.
Thank You for your frank advise, It did not fall on deaf ears.
I have pondered it for weeks and also PM'd a few others.
This cancer was just a straw on a hay stack of bad circumstances. But it broke me, mentally & physically.
Trying to get through the red tape has been like trying to dig through bedrock with a shovel.

I truly feel I would have received better treatment if I were a DOG brought in for emergency treatment at an ASPCA....

A lot of people feel like I'm letting them down. I can only change Petey, none other.
The people on this forum are the most extraordinary and compassionate people I have ever met, bar none!

Anywho, it's getting hard to eat (hurts).
I'm not as brave or as strong as your Mom. And I won't carry it that far. I'm just looking for a month or two.

So, after all my trials and tribulations, it brings me to one simple question. Can my GP prescribe the appropriate pain meds? What should I ask for? Please let me know.

Try to enjoy your Easter. Mine will be more like a "last supper".

You are in my prayers
Sincerely, PeteyB

Petey,

Seriously..I almost wish we were in your shoes.
My husband had his lymph node biopsied 2 yrs ago and they said it was negative. This passed November 2006 it was biopsied again and positive..along with 2 others on the same side and one other on the opposite side. So. Stage IV base of tongue.
You probably have a much better chance of fighting this and winning than he does, but here we are fighting the fight, with our regrets of not getting a second opinion 2 years ago.
Ultimately the choice is yours, but if you are just giving up because of red tape...I don't get it. We all know how hectic it is when the initial diagnosis comes and we have what seem like a hundred appointments to keep track of, but once things settle down and therapy starts, it really does get easier.
I have no idea how to help you with the insurance problems, but I am sure if you ask about payment plans they must have something to accomodate patients. I hope someone else in the forum can come through on that end for you and your family.
Vicki

Hey Vicki
I have been folowing your journey.
A lot of people do not understand that base of tongue is different from tongue. Tongue is on the front 2/3rds,and must be cut out. Base of tongue can not be cut out, to risky, to much damage to other "parts". If I could just get chemo, and rad, I'd do it. But they will most likely take my whole tongue. Then the rad & chemo. 8 months of hell & no tongue. That's where I got off the buss. Thanks for your concern, Good Luck to your husband.

Petey,

I still don't get your extreme pessimism about this. My tumor was also on the front 2/3rd of my tongue (along the side), and was POORLY differentiated (which, as you probably know by now, is worse than what your biopsy seems to be showing). I had surgery, followed by radiation, 18 years ago -- count them -- 18 years. Yes, treatment was tough, but once I recovered, I got back to eating whatever I want, have traveled all over the world, and have taken up activities that I wasn't even doing before cancer. Stop talking like you have one foot in the grave, and get moving toward a course of treatment that can get rid of this disease.

Cathy

Petey,

I am only a few years shy of your age. I have two kids (ages 12 and 15). If I were you, I would do whatever it took to beat this disease or at the very least, extend my life as much as possible. Your kids deserve the effort. Enough said on that... I wish you luck my friend.

Paul

Petey,

I forgot to answer your question about pain meds... Yes, your GP can prescribe pain control medication. My mom has been on Vicodin for most of the past 12 months (increasing dosage, decreasing time between pills).

Petey.....I know that this isn't your thread, but I will respond to you....You say that IF you knew that you wouldn't have to lose your entire tongue, you'd do the rest of the treatment. Have I missed something here?? It seems to me that you have never had a proper diagnosis, nor even a suggestion of a treatment plan made by a team with expertise in this field. You are throwing away your chance for a future without even knowing what you are fighting!!!!! Get going tomorrow. Don't make phone calls. Take yourself to a medical center, and simply BEGIN.

Look at it this way: You can have a few months of hell and be dead, or you can have a few months of hell and get better and have a life and another chance. What's the worst that can happen???

At least find out what the full diagnosis is, and what the probable treatment is. You are presuming that you will lose your entire tongue. Read the posts for BOT patients. MOST of them were treated without surgery.

Paul

Agian , My heart goes out to you and mom ..I only wish they could find somthing to make her more comfortable


Shar

Petey, I have been reading our posts since the beginning. You need to get into treatment and stop going down this path that others have described as resignation to death and an end in the near future. Just from the posts above in this thread it is clear that you are working from bad information. BOT cancers are only treated in the most extreme cases with surgery because of the consequences to quality of life. The treatments are typically radiation and chemo to reduce size and volume and at the end IF necessary, surgery.

Even for those that have a total glossectomy, which are NOT the majority of cases, there is still life afterwards. Is it a complicated and difficult life?... certainly. But it is worth having. I won't bother listing all the famous people that immediately come to mind that have had bad, if not worse situations and still made major contributions to the world. I don't want to appear too calloused here, but you need to quit screwing around and go deal with this while there is time. If you keep waiting, you

Petey, Make some phone calls to ACS, I think they helped get my brother into Palms of Pasadena Hospital in St. Pete, Florida. My brother had stage IV testicular cancer and a mass in his abdomen. He did not have health insurance of any kind and they took him in and gave him chemo, and his surgery. He spent a good 3 months there, they were wonderful to him....Thank God he made it through all of it....don't give up!!!! Carol

Petey, one more thing and I will leave you alone for the day!

Life is not only about what happens to you, it is about how you deal with it!

Brian, your above post to Petey was not harsh, I think it was perfect,hopefully he will read it and DO something!

YES PeteyB Again you must try- I had a full glossectomy and 5 weeks out I'm eating and talking- not super clear yet but getting there. Life does go on. Be BRAVE

Petey B......are you trying to get some help? There has to be someone in Florida that can help you, what about the doctor's office Gerry gave you, have you heard back? Keep calling.....do not give up! misskate's post is so awesome.....
misskate I applaud you! YOU are very brave....I realize Petey is having problems getting help due to lack of insurance, but he needs to FIGHT!!!!!!
God Bless, Carol

Happy Easter Paul- Thinking of you and your mother today. Hope you get to enjoy the day together

Love to you both- Miss Kate

Kate,

My mom (Kathleen) is looking forward to later today (we are all heading to my sister's house) for Easter dinner. Of course, I must admit, my eyes will be glued to their 70 inch HDTV watching the Masters final round.

Sadly, Easter was the last holiday my dad enjoyed before his passing. Funny how a single snapshot ends up capturing the true essence of a person. While at my house in 1997 for Easter, a photo was taken of my dad leaning back on one of my dining room chairs. That photo was so wonderful; copies were made for everyone in the family. I smile every time I look at his face in that photo. He looked as content and peaceful as I ever could remember

Paul,


I hope Easter brought a day of wonderful memories for you and your mom !!! and I hope you enjoyed that TV !! LOL. My thoughts are with you as always! We had a nice easter ..kids got up EARLY ( hahah) and found all the eggs and Easter baskets ....Memories make life worth living ..just to make more !

Shar

Hi Paul,

That picture of your Dad sounds wonderful. I'm assuming you have been taking some of Mom too. Hope the dinner went well.

Regards JoAnne

Hi Paul- I too was in a room with a big TV with the Masters on it!

Glad you enjoyed the day with your Mom- she and your Dad sound like fantastic people who lived each day fully.

You sound like a wonderful caretaker.

Thanks K, J & S...

Another holiday enjoyed with mom still around... Easter was wonderful. Although, I ate wayyyyyyy too much. Mom handled it surprisingly well (the holiday.... not me eating too much :-)...

Paul

Today is my birthday

The Lord works in mysterious ways! You are a Good Man Paul R. Today is Earth Day and also my daughters 23rd birthday. Happy Birthday to You! Enjoy this "special day" with your Mom and Family.
Keeping You in my thought and prayers, PeteyB

How wonderful that things worked out so well for you and that you were able to again relax and have some peaceful moments with your mother. I'm sure your Dad's spirit is very close to you and watching over your Mom as well. I hope you have many more moments joyfully reminiscing in he days ahead.

Hi Paul,

Now that's a great story and a fabulous birthday present. I agree with you about not knowing how much we are affected by stress until it's removed. It's hard to be pulled in multiple directions, and try to figure out where to focus your energy. There's a reason that trip was cancelled, you are meant to be right where you are.

Today is my Dad's birthday, he's been dead for 13 years but I still think of him often. Your story proves that the people we love are always with us helping us when we need them most.

Happy Birthday,
Regards JoAnne

Wow... More than a month has past since my last update. My mom is still progressing with the same symptoms that have plagued her with this disease. The level of pain has increased enough that she has doubled her pain meds (still vicodin). The tumor octopus as I call it now has pushed one of its tentacles further down the right front side of her neck. This one is very painful to touch. It looks like a fatty tissue cist (I sure wish it was just that...) My sister fears this one may break through the skin. According to her, once that happens mom will be facing a new set of challenges. Thankfully, the tumor seems to be leaving her left side alone. Mom is still able to lay on her left side and sleep through the night. Her food intake is still about the same. The nasal liquid discharge problem is still there.

On the bright side, mom made it to her 72nd birthday goal this past weekend. Last night, we brought cake over and sang for her.

My niece is pregnant with her first child. This gave mom a nice piece of news. This would be her first great great grandchild. Unfortunately, the January due date may be too far out for my mom to make... But, she has surprised just about everyone so far on how long she is lasting...

I will write back.... Sorry so long since my past post.

Thanks,
Paul

Hello Paul

As I said before, YOU are a good man. Your mothers spirit and strength are amazing. Tell her belated Happy Birthday from many on the OCF Forum.

Just knowing she will always be alive through others will bring her much happiness. Expecting a first great great grandchild must be very special and comforting to her. Congradulations to all.

Hi Paul, Glad to hear that Mom made it to her 72nd birthday. She may continue to surprise everyone. The duragesic patch is a good option for pain management if the vicodin stops working for her. Regards JoAnne

The tumor on my moms neck just below the right jaw hinge is now growing at a rapid pace. It is now pushing out and is the about the size of a golf ball. Sadly, the cancer had lulled me into a false sense of security. The other areas of growth seemed to be taking there good old time. But, this tentacle seems much more aggressive.

When I first got there, I mentioned to my mom that the tumor lump was oozing a white puss. She was unaware that it had started doing this. I got a close up look at it tonight. You can see the tumor mass end just below the skin line. It looks like the end of a average size cigar is being pushed out from within her. The leak is coming from a hole that appeared at the center tip of the lump.

My mom said that is it very painful when touched (even being brushed by her own hair causes her pain). I suspect that in the next week to 10 days, the tumor itself will break through the skin... The enemy from within will makes its appearance for everyone in the family to see...

I hate this disease...

Paul

Paul, we experienced some of the same and my heart goes out to you. The reality is that dealing with this takes courage, love and some form of faith that many people in the "civilized world of hospitals, nursing homes, etc." will never have to come face to face with. Wish I could be there to help nurse or just hold your hand. Amy in the Ozarks

Paul, it's a very tough situation but your family has been so together thru this. Hang in there and keep making those memories. Regards JoAnne

Paul


So sorry to hear all that is going on , But Happy Birthday to MOM !! AND Congrats on the BABY !! Can I ask a personal question and maybe the answer is here and I dont remember ,,What is mom 1st name ? Just that when I pray I want to use her name. my hugs and thoughts are with you all tonight !

Shar

Hi Sharlee,

Mom's first name is Kathleen...

Thanks in advance for those prayers...

Mom is still with us and hanging on to her routine as best she can. No longer able to leave the apartment (legs too weak to handle the stairs) she continues to push forward holding on to her now limited independence.

All of her symptoms are still there (some are getting worse)... The tumor pushing out her neck now appears as a puss sore that will not heal. She is having more difficulty swallowing and is still experiencing the nasal exit problem whenever she drinks any liquids or foods that are in semi liquid form.

But, the main difficulty she is having is keeping up enough intake to maintain her strength and body weight. I have no idea how she is still able to stand and walk (she is now 72 pounds).

Its only a matter of time... She gave up driving the car over a month ago (thank God!!!)... And, she asked that my sister take the cat on Monday because she is having difficulty feeding him in the morning (the mornings are the worst for her). She has for the last few days started to get out the boxes for her lifetime collection of Wedgwood china (many of them given to her over the years by all of her kids). The boxes are sitting there neatly stacked on her dresser. It's has if she is preparing the final closure of the apartment contents post her death.

I remember this time with my dad... I am ready to say goodbye... I just want her to be at peace.

Thanks,
Paul

Paul, your Mom is doing this the right way! What a strong woman she is, and how lucky to have youall there with her.I don't say this lightly because I know so many people who are alone in nursing homes and hospital facilities. Prayers to your family. Amy in the Ozarks

Hello Paul

Amy's above post captured all my thoughts and feelings.

God Bless You.

Your family is in my prayers.

Petey

Hello,
I want to let you know how brave I think(you)and your mother are. This is not an easy decision to make by any means. I lost my father last week(cancer of tounge, roof, jaw, lung). He found out one year ago that he had cancer. He didn't feel sick. He was 56. He chose to fight his heart out. He had two horrible surgeries, chemo, radiation, immunotherapy, and had to recover from all of that and multiple infections- on top of having cancer. After doing all of that his quality of life was something I wouldn't wish on my worst ememy. He also had the emotional stress of wondering if is this going to work, will I be cured. He was let down everytime. His body mutalated. Had he had known what a mess this all would have been, I can say in my heart he would had done what your mom is doing.Enjoy his life. He was not a big pain med guy either, but he got with that program real quick. I wish he would not of had the surgeries and just got some comfort care. You can't ever say what is right for the next guy or what will work. I don't even know if the doctors are ever really sure, they even tell you that. I guess this is all part of the bigger picture and we all have are journies to go on. I wish your mother the best. I hope she is pain free. I want her to be happy in her heart and that will help you a lot with whatever she chooses to do. Good luck and make every second count.

Hi Paul, It sounds like things are winding down. What a long journey you've all had. Please let me know if there's anytyhing you need. Regards JoAnne

you must have a very strong mother,because i could not take all the pain.i am praying for your mother and you and you will be in my thoughts every day.please keep us posted.
your friend
lynn

Paul,

You and your mother are in our prayers.

Amy C. and Garron

Paul ,


Please let Kathleen know that you are all in my prayers and I admire her courage and strength through all of this..May she find peace and comfort . My heart goes out to you all!


Shar

What a very long time i seem to have been reading you posts Paul.Yesterday Robin said more than once,if he had known the outcome of his diagnosis he would never have agreed to all the treatment.Having stood by his side and watched his progress,i cant say i blame him.He hasnt eaten a meal since february,but rarely lost the desire to sink his teeth into a juicy steak.He has had no quality of life for months and now this cavernous fistula is the last straw.I applaud your Mothers decision to do this her way and yours for walking by her side.
Good Bless you both.

Paul - My heart goes out to you and your mother in this ever so difficult journey. The closeness and love between the two of you really touches me. (My son's name is Paul, too, and your Mom and I are the same age) I pray that in the days ahead, there will be peaceful and treasured moments for both of you.

Well... 15 months after diagnosis, mom has finally given in and has agreed to have 24X7 care. She is still staying in the apartment but will have a home care live-in worker there from 9 am Monday through 9 am Saturday. The family will cover the rest of the time.

I am heading down there tonight to stay over and be there when the live-in worker arrives.

Mom's left leg (calf down to the foot) is now causing her pain when she walks. Two toes on this foot spasm 6 to 7 hours into her sleep. This wakes her up and she only gets relief when she gets out of bed (hence the major need for coverage).

The significant difficulty to walk (just in the mornings a few months back) is now with her all day. The nurse was there today and has coached her in turning up the meds for relief. Mom is fighting this option. But, I think she will agree since her last bit of independence is over. No more living on her own... Cat gone... Car sitting there never to be driven by her again...

Having someone there with her all day is such a relief. I am glad she has agreed to this decision.

Paul

I Am glad you find comfort in this and I am sorry mom is hurting so much still. I have thought of you and Mom often ...and pray for you both as well ..please know I hold you in my heart and thoughts.

shar

May God be with you at your time of need. Bless you and your family. You are a good man Paul.

Petey

Dear Paul, something I did for John,during his last weeks, was gentle foot,ankle and leg massages with a very good skin lotion several times a day - it might help with the spasms and the human contact is always comforting. Amy in the Ozarks

you know i read alot on here and this one is really making me more sure that the best thing to do is go for comfort care and be one body not a cut up mess thats sick to the end..im sure in some cases surgery and treatment may work but there are others that i think may be to far out of hand and the best would be the comfort care... we are going to ohio state on monday to see what the dr has to say on this 2nd opinion.. the dr in morgantown really wanted to do some extensive things and EzJim thought it be best and go for a 2nd opinion.. and i agree..im almost certain hes gonna say he doesnt want anything done and just be the way he is.. but i guess we will wait and see..what ever it is he decides then that what i will go with..

Hi Paul, I have to agree with Amy that we can't underestimate the power of contact. A lot of our patients find it comforting to have someone holding their hand, or the light massage with lotion that Amy is describing. My thoughts are with you and your Mom. I'm glad to hear that she has accepted the live in help. I hope that her passing in an easy one. Regards JoAnne

Amy & JoAnne,

Thank you for the suggestion on contact and massage. Mom's left leg continues to bother her. The live in aid is massaging her foot and leg daily. It is helping.

I agree completely about touch... I try to spend some of my time with her every visit just sitting next to her holding her and consoling her. Since my dad is gone, he is not around to hold her throughout this journey.

I stayed with her over last weekend. Since I am such a deep sleeper (I have slept through many a storm (even a few earthquakes...) I got a great idea from a co-worker (thanks Ron...). I bought a wireless door bell ($25 bucks) and hung it on the wall of the second bedroom (uses 3 C batteries). The door bell package came with 2 small button units (for front and back door application). Mom can easily push the buttons. I put one button next to mom's bed and the other she carries in her robe pocket. If she needs me anytime through the night (if she is in bed or in the bathroom) I am just a pushbutton away. Of course, my mom had to push it about 10 times the first day just to test me

Paul

I think of you often ....and sounds like things are under control and you seem to have a sense of peace in your last post .I am glad you found the ice cream ..it really sux when ya can't have what ya like ( at anytime in life LOL ) . enjoy the shore ..it is beautiful AND relaxing ..Kknow that my thoughts are with you and mom .


Shar

Paul, you are a beautiful man. Amy in the Ozarks

P.S. for "interested others" Paul's idea of the wireless doorbell is great! And one that helped me alot was a 1st class baby monitor- I hooked the baby speaker to John's bed and the receiving end to my bed upstairs and I could hear every sound he made.[my DIL now uses it and she can hear her baby in his crib when she is outside with the 3 yr old]These are both great comfort features for caregivers.

I have a wireless doorbell, too. It consists of a sign on my front door that says "Knock loudly, doorbell out of order". Good ideas tho' on doorbell and baby monitor. My son's "call button" was sending text msg from his bedroom to me in living room or wherever. Paul - I'm glad for ice cream, the beach and for your sisters helping you out. Hope you and your family have a really nice relaxing time at the shore.

3 hours can sometimes mean a lifetime...

3 hours after my last post yesterday, I got "the" call from my sister that it was time to take mom to the hospital. Her condition had worsened overnight so significantly that she did not sleep much through the night. The leg discomfort, now diagnosed as a blood clot in her leg, was causing her major pain.

I raced down to see her... I got there the same time as the ambulance. Mom, now barely able to stand, stood defiantly by the sink lighting her last cigarette (made the ambulance techs wait until she finished). I smiled... But, it was sad to see the addiction that caused her cancer (most likely) still owning her till the end.

Once at the hospital, the IV morphine pump was hooked up... Started at 1ML per hour... Now up to 4... Mom is asleep 95% of the time.

It's 5 pm eastern... I am taking my kids to see their grandmother for the last time. Its sucks just to type that statement...

I do not have much time to type, but I wanted to make sure I had at least one more update entered her while my mom is still alive. Sadly, the next time I get a chance to update you guys will be to deliver the final sad news.

Thanks,
Paul

Hey Paul, what a long journey this has been for you and your family. At some point in the future, the memories that you have been making with your Mom this past year will be comforting to you. She's quite a character who clearly does things on her own terms. I'm glad that she got to stay home as long as she did and I hope that her passing will be an easy one. My thoughts are with you and your family. You are a strong, loving son - and you've done a great job supporting your Mom. I'm sure that made it easier for her to deal with everything she had to face. Regards JoAnne

Paul, you are such a compassionate and caring son. My heart goes out to you, to your Mom and to your family. Please do get back to us when you can.

Mom passed away on Sunday August 5th. I have much info to enter but will need a few weeks to gather my thoughts. I want to thank all of you for your unconditional support. I see my mom's strength and compassion in all of you.

Thanks,
Paul

Paul
I am so sorry to hear of your loss. I know that it's been anticipated by you and your family for some time, but that makes it no less a tragedy. This Beast takes so much........
My prayers are with you
Wayne

Paul, I'm so sorry to hear about Mom but she is beyond all the pain and frustration this cancer causes. I hope that you and your family will find comfort in how you all pulled together and supported each other. Please let me know if there is anything you need. My thoughts are with you.
Regards JoAnne

Paul,

I'm very sorry for your loss. I followed your post from the beginning. My prayers are for you and your family.

Tim

Paul: Just wanted to say that we are sorry for your loss; we will certainly keep you and your family in our prayers....

Paul,if you believe [as I do] in better places, then you know she is there. You deserve much credit for your loving care. Amy in the Ozarks

Paul,

I'm so sorry to hear of your Mom's passing and yet I'm relieved that she is out of pain and is no longer suffering. We both had strong willed, stubborn women in our lives who had to do it their way, but I also know they both had a place
reserved for them in heaven.

My prayers are with you and your family as you slowly adjust to your loss.

Paul,

I am so sorry. May you find comfort in the fact that she is in a better place and free of the pain from this terrible disease.

You and your family are in my thoughts and prayers.

Joy

Paul, thoughts and prayers to you and your family. What a great son your mom had in you!

LJ