I'd like to Thank everyone for their deep condolences and my go back to everyone that has also lost a loved one.
It will be 7 months Feb. 3, 08 that I lost my love, my life. It feels so very empty and lonely without him. It seems like everyone just thinks our lives go back to normal and that I should be fine. I'm tired of telling everyone that I am fine, I"M NOT FINE. I feel so lost and angry at the world. I'm afraid of letting people know how sad I feel. I need him back in my life. Frank was such a good man and my hand of support for all my daily things. I still reach for the phone when I have a bad day or if something good or funny happens. We use to talk on the phone as least 4-6 times a day.
I miss his voice, I miss his strong hands, I miss his laughter and his smile.
Am I not healing fast enough or does everyone feel this way.
I'd like to Thank everyone for their deep condolences and my go back to everyone that has also lost a loved one.
It's the first long weekend without my best friend and it will be 2 months since his passing tomorrow. I woke up this morning crying and it is 9PM and I just can't stop.
I finally realize Frank is not on a business trip or visiting his Mom in England, he is gone and never coming home. Oh my God the pain is so bad, it is so deep it feels like my insides are just ripping away.I try to rationlize why after 2 months it has hit me so hard, I know that I've been waiting for him to come home.
It's my first long weekend and we would have gone somewhere to spend some time together. We were raising our Granddaughter and spent alot of time catering to her. She is a competitive dancer and we took off many weekends for competitions and Frank stayed at home. We agreed that once she was in university we would start to travel and enjoy our lives together. It did not work out that way. She will be in university in 3 years.
I miss him so so so much. I am going back to work on Tuesday and Frank would normally call me at least 3 times a day and when I was having a bad day I would call him and he would always be available for me. When he knew I was upset he would show up at my office with coffee and donuts. He was a great man!!!!!!!!!!!
What I miss the most are his hands. My husband had the nicest hands. They were strong masculine hands. You see the ads with the older couple holding hands walking down the street that was my husband- my best friend. His holding my hand was like a security blanket. I always felt safe holding his hand. I miss that so much.
I guess I'm just rambling but I don't know where else to go to express my pain. We deserved so much more time. He conquered drug and alcohol addiction 15 years ago. He went from being a terrible husband to being the most wonderful man. He conquered so much but the dreaded CANCER conquered us.
28 years and now I have nothing. Will this pain go away? I have a deep hole inside of me that cannot be filled by family or friends. You have to love your spouse deeply and then loose them to fully understand my PAIN.
I'm sorry for going on but thank you for being here to vent.
On July 3 2007 I lost my best friend, my husband. It still feels like he's away somewhere and is coming home soon. I still expect him to call me on my cell phone to ask where I am and when I'm coming home. I miss him so very much. We had so much yet to do.
On Nov.13 we were diagnosed with this horrendous disease and given 1 year to live. We were inoperable at this stage. We went home and as my daughter Michelle informed this post about how we started him on all organic produce, no dairy, no meat and all different supplements as well as Taheebo Tea. We were doing so well that the afternoon before his placement of a port a cath we went for our appt. with our oncologist. He was so amazed at well my husband looked and felt and how good his blood works were that he said it would be a sin to start him on chemo. The oncologist wanted a surgical second opinion.
So off we went to see a LIVER SPECIALIST and HEAD OF SURGERY at TORONTO GENERAL HOSPITAL good old DR BRICE TAYLOR and his team of worshippers.
We were tested and informed that we were now a good candidate for surgery. They started by placing a external drain to see if everything was working on the other side of his bile duct and his liver. Infection time- 10 days in hospital. Then the Dr. telling us that he would be operating on May 1 2007. The LIVER SPECIALIST told us that 3/4 of his liver that was ATROPHIED ( meaning it was a dead liver) would be removed and the good bile duct and portal vein would be reconnected to his bowel and he would get another 5 years to live. My husband was so excited.
On May 1 2007 my husband walked into the hospital on his own power. He was still talking, walking, eating and still running his own business.
When the surgeon came out within an hour of taking my husband into surgery I knew something was wrong.
Dr. Taylor the LIVER SPECIALIST informed me that my husband had CIRROSIS of the liver (meaning it was a living liver with scar tissue) and another tumour under the first one. He also informed me that if they would have cut into a cirroded liver he would have bled to death, so they just closed him up.
After 12 days in hospital, where my husband DID NOT EAT or move around very much and was delusional, they told me he could go home and live a life of quality.
We left the hospital in a wheelchair, with my husbands stomach completely bloated with fluid and his ankles twice their size.
QUALITY OF LIFE- my husband slowly deteriated in front of our eyes. We tried feeding him baby food and shakes to try to keep up his strength. He never again asked my daughter how business was or barely spoke in a manner that we could fully understand.
We had to take him to the hospital once again because he had difficulty breathing. Here they drained his belly and kept him monitored for a week and when I questioned his inability to speak they did a brain ct to see if he had a tumour. It came back clear. So they sent me home to let him die.
We continued to try everything in our power to bring him back eg: chinese herbalist, naturapathic Dr. with 3 hr intravenous remedies. It was all too much for him. We were given 3 separate death dates as his body started to give up, but he kept fighting until the early morning of July 3.
My best friend was a 6'4" tall strong healthy 230 lb. man of incredible stature. He was a funny, warm, loving man.
In a split second on Nov. 13 our lives changed.
ON JULY 3 THE LOVE OF MY LIFE PASSED AWAY AT A MERE 100 lbs. He basically starved to death and no medical personal would help us.
He passed away at home with my daughter, granddaughter and myself with him.
To end this, if you have things you want to do with your loved one DO IT TODAY, DON'T WAIT, BECAUSE AS I SAID BEFORE IT TAKES A SPLIT SECOND FOR YOUR LIFE TO CHANGE. HUG THEM, KISS THEM, HOLD THEM AND ALWAYS LET THEM KNOW HOW SPECIAL THEY ARE TO YOU.
I just got word from my mom (I have a bad cold and can not be at the hospital) His fever is gone they have him on IV antibiotics and morphine for the pain.
They did an ultra sound and his tumour is now 2.7cm it used to be 3.5 so maybe that news will help get out of the funk that he has been in.
They are looking for an abcess, no word yet on weather or not they found one.
Its coincedental though his procedure was two and a half weeks ago and this fever was so sudden. similar to your hubbies situation.
Keep you posted.
Thank you so much for sharing your story.
My family just feels so hopeless right now because he has been suffering so much. It almost seems never ending.
I shared your husbands story with my mom and dad and Im hoping they will see that others have been down this road, suffered hell and come back around.
Dad was rush to the hospital last night his fever was 104.2 and he was in great pain.
His fever is down this morning and like you previously warned they think he may have an abcess.
They are scheduling an ultrasound and maybe cTscan for this afternoon.
He is feeling much better compared to when he was admitted.
Will keep you posted
How is your husband doing??
I'm trying to remember
The day before it came
A time when life was normal
The day before the "rain"
It's funny how a couple words
can change your world so quick
and EVERYONE'S around you
That day they said 'your sick'
Your sick?? but how?
You'll die?...Not now!
Your thin, your weak...
Too tired to speak?
Im trying to remember
one single day before
You laughed that day I SPOKE TO YOU!!!
but now you laugh no more
You joked and said
"Sweetie Im fine
You'll be stuck with me
for a very long time" LOL
that hurts,,, that too
don't touch me you
don't hug me tight
This is not alright
Im sick of trying to remember
the day, week, month before
the draining of your "YOU" began
When HELL came to our door
How DARE hell think we'll just lay down
and put you out to rest
we'll fight this fight when you cannot
we'll get you back "your best"!!
SO CANCER, HEAR ME LOUD AND CLEAR
HE IS NOT YOURS TO TAKE
SO PACK YOUR TUMOURS, BUMPS AND CYSTS
THIS ONE YOU WILL NOT BREAK!!!!!!!!!!!!!!!
Thank you all for the emails, I am so sorry it has taken me so long to post.
Its been a journey and a half since the last time I wrote.
Dad is not doing so good right now and it is taking a toll on everyone.
Its very difficult to see someone suffer so much, or see someone who was once so strong and full of life weaken and appear to except defeat! ((WE LOVE YOU DAD IF YOU READ THIS STAY STRONG, YOU KNOW WE ALL LOVE YOU))
It is also hard to watch those around him suffer due to watching him suffer
(I LOVE YOU MOM, VENT TO ME ANY TIME) I KNOW you will read this!!!
Here is an update...
Last time I posted we had just left the ONC who told us they were cancelling Chemo because he could not see the tumour and that he obviously couldn't treat something he couldn't see. He sent us to another surgeon for a second (technically 5th) opinion!
This sugeon was very upset at the fact that the last hospital felt that my dad was unresectable and that he would certainly die within a year.
Thats the good news ...HOWEVER
We also found out that the first hospital didn't tell us that my dads bile ducts were blocked for such a long period of time (YOU KNOW WHILE HE WAS TRYING TO CONVINCE HIS STUPID GP THAT THERE REALLY WAS SOMETHING WRONG AND THAT IT WAS NOT JUST REFLUX, STRESS OR GALL STONES) anyways the blockage caused 3/4 of his liver to die!
The new surgeon and team, feel my Dad is a candidate for resection. Well at least so far. He will be reassessed next month.
He has had a drain put in and has been suffering because of it.
His spirits are down his hope seems to be slipping.
We are starting him back on the Pau D'arco tonight as he was off of it before and during this procedure. We are hoping to see an improvement and hopefully it will help alleviate some of the pain he has been experiences.
Then we are hoping to help him put on weight, he has lost so much weight and has no appitite.
I HATE CANCER
I hope to read some positive posts tonight.
I hope to hear of some success stories
and I hope and prey we all get throught this horrible horrible disease!
Yes we were originally told that if my dad had the metal stents put in he who never be able to have surgury. We have heard other wise and are are currently seeing a new surgeon to see what he thinks. I don't think he would even be looking at my dad if he didn't think surgury was still possible.
Also we found out that the stents are titanium a nd MRI friendly! Whew thats a relief because we really want another MRI done CT scans are just not cutting it!!
Thank you Jules
If you have been stented with METAL stents can you have an MRI done???
Im thrilled to hear that Mark is doing the Gerson Therapy.
"The Gerson Therapy" book was one of the first books I read when my dad was diagnosed. Two weeks later we were fortunate enough to meet with Charlotte Gerson (Max's daughter) at the whole foods expo. Between her and the other individual at their both we learned a great deal, they were wonderful.
My dads diet is based on Gerson, Mabribiotics, Alkaline based etc. Similar to Geoff All Organic, No Meat, No dairy,lots of tea and suppliments
(the Tea my dad takes Pau D'arco/Taheebo is used by Gerson as well)
I am really interested in hearing about Marks progress.
sorry Ive taken so long to respond, just trying to figure everything out.
We looked on his blood works and there is a catagory Ca 19 however it has question marks where the level should be.
CEA is not there and we will be questioning the onc. about this
We have now been sent to another surgeon, who has scheduled my dad for another CT and Ultrasound (Wednesday morning) Then they will decide weather they think another MRI is needed.
Im hoping he does blood on Weds. too
Dad is looking great feeling good but finding it hard to put on weight.
His caloric intake is up to 3000 per day and his weight will not go up.
It had gone up at the end of Dec. beginning of Jan. but now its slowly going down, any suggestions??
researching natural weight gain is a joke, everybody wants to be skinny nobody is posting "THE GET FAT NOW HERBAL DIET!!!" we guarentee you'll balloon 27lbs by tuesday LOL
Anyways, the journey continues
Good night all
Wow Mary that is great news I hope and pray your husband stays on a healthy coarse aswell.
When my father was diagnosed they told us that Klatskin's does not responde well to chemo and radiation they also told us that due to position and size he was unresectable. They were unable to get the plastic stents in and told us that as much as metal stents were better they would also prevent him from ever having a resection.
We did find a wonderfully optitistic oncologist who said he had had some success with GFLIP but that it would not cure him it would only possibly extend his life by a few months and improve his quality of life.
Question... when your husbands CTSCAN showed nothing what were his blood levels like?
Please do try the Pau D'arco even if his results remain positive also I strongly reccomend Reverse Osmosis Water
I have had great success switching to this water while treating my 10 year old Autistic son. His behaviors and thought patterns changed instantly. Its amazing what something as simple as changing water and diet can do!!
Im so sorry for your loss
I found it very hard to read some of the posts aswell when my father was first diagnosed.
It always seemed that no matter what anyone tried the end always played out the same.
My family and I are fighting this tooth and nail.
We have had success so far but we know its a never ending battle.
If you do come across and organizations that support cholangiocarcinoma research or if you start one on your own Let me know I'd love to participate in anyway I can.
You can also find so much info online about Pau D'arco /Taheebo
Its worth reading and sheds a little hope and of coarse skepticism but that comes with all things new and unfamiliar.
Thank you so much for your comments.
Regarding the diet:
The day my dad was FINALLY released from the hospital, we went out and bought ...
Rice and vegetable steamer
REVERSE OSMOSIS WATER (5 bottles to start)
All ORGANIC fruits and Veggies
We started juicing all kinds of crazy concoctions for him (like I said before, he is a trooper, some of the juice tasted really NASTY)
My mom went to see a TCM doctor and brought home three shopping bags full of herbs, or as my dad said something that looked like it had been swept up from the backyard LOL!
We boiled the herbs and made my dad this tea which he was only able to stomach for two days before it made him sick to his stomach.
Next we went to the health food store. At out local health food Store "Garlic Grove" my mother explained the situation to the owner who proceeded to tell her the story of Josip Gabre, a man from our city who beat cancer, she gave my mother his book to borrow titled "How I Beat Cancer" and explained that she worked directly with him.
We both read the book and decided my dad should be on this Taheebo/Pau d'arco Tea from Brazil. he started immediately.
The following week his diabetes was completely under control, and his bili rubin level had dropped significantly.
So at this point he was on a strict Vegan diet and the tea.
Our major problem then, was that my dad was still losing weight and that was causing him to be extremelt tired and miserable.
We read more books, visited more web site and had to make a descision as to which road to take regarding diet. This part was soooooooooooo confusing there are so many different diets and so called miracle cures it gets frustrating.
We looked at them all and found that they all had the same foundation, organic and at least 80/20 vegetarian diet.
so how do you fatten someone up on a sugar free, dairy free, vegan diet??? It hard and its been a slow process but here's what we did...
There is an organic protein shake called "VEGAN" it has 160 calories per scoop, it contains every vitamin suppliment you could ever need as well as Omega's and next to no sugar.
Juices with banana's, strawberries, Soy milk and a little bit of STEVIA (tastes great)
Avocado is extremely fattening and full of nutrience
Potatoes, Brown Rice, Lots of UNSALTED almonds, dates, tones of greens, lots of small meals.
Suppliments:- Geraniun capsuls (helps oxidize the blood)
-Vitamin C, Buffered, if you can stomach it take the powder if not take
- Taheebo Tea also called Pau D'arco 1 and a half to two litres per day
as well as 4-6 capsules. If you can find the tinture it is said to be
better thats still being debated! Our whole family is taking it and
are all seeing improvements in our own health.
- Selenium, Omega 3,6,9 and occasionally I throw some "cell food"
into his water (shhhhh he doesn't know that one LOL)
Plenty of fresh air, this one has been harder to get him to do as he was way too tired before. so we bought a dog in hopes that he would walk it, so far my mom walks the dog and occasionally dad does too!
One thing that I think has also been important is "cheat days" for sanity purposes!
He's allowed to eat chicken breat (organic) about once a week.
and occasionally a bit of cheese.
Oh, we also started giving him a bit of essiac tea last week no complaints so far!
I know yesterday I had commented on his CTSCAN but I think what is more important is his blood results.
Of the 42 blood levels tested only 1 was high (his GGT) which has come down from 708 to 172 and his Lymphs were a bit low EVERYTHING else was at normal levels and I don't mean normal for a man with the big C I mean NORMAL!!!!!
LAst month his blood levels were way out of wack so to me this is incredible.
I hope this post helps
I think the hardest part of the diet is wrapping your head around that fact that nutrition might be able to heal your body. We are so conditioned to believe in pharmacuticles and medical technology that anything else seemd way too hoxie!!!
YOU HAVE BEEN MY INSPIRATION IN MY SEARCH TO FIND A WAY TO HELP MY DAD THANK YOU SO MUCH!
Please read my post titled "Confused"
You will understand why I am thanking you!
Michelle and the whole Mack Family
I have spent two months reading these posts and the posts of many other cancer forums.
I have spent two months researching diets, alternative remedies, new chemo intervention etc.
Two months and 11 days ago CANCER was just something other peoples families were dealing with, chemo always saved the day, and I really didn't think I knew anyone who had it.
On November 13th 2006 my dad was having a procedure (ERCP) to remove some gallstones that were causing a blockage and making him jaundice and rather ill feeling. My mother and sat in the waiting room holding hands and waiting for the Dr. to come out and tell us everything went well and we could see my dad very soon.
He did eventually come out but what he said to us changed our lives forever.
In a very COLD and IMPERSONAL way we were told that my dad had a rare cancer called Cholangiocarcinoma-Klatskin tumor. stage 3bf 4 and that he had about 12 months to live. I remember him saying "here, let me draw you a diagram"
I remember my mom having to tell him and i remember his face.
My big strong daddy 6'4 230lbs was now 180lbs very jaudice and scared to death.
Two more Drs came in to explain how chemo and radiation were relatively ineffective with this type of cancer and that he would slowly deteriorate and then one day he just wouldn't get out of bed.
My mother, myself and my boyfriend decided we were not going to let this desease just take him so off to chaoters we went and then endless hours online researching and learning all about this Klatskins!
We met with a wonderful oncologist who actually had personality and displayed compassion (very impressive) and he told us that there has been some success with GFLIP. My mother and I were very opposed to him having chemo as we have read so many horror stories however, we knew that this was a descision that was his and his alone.
My dad agreed to go along with our crazy diets and foreign tea's and even our endless chatter about miracle cures we had read about online. (what a trooper)
Chinese Drs. homopathic drs, we dragged him to them all
No meat no dairy no sweets nothing processed and 2 litres of Pau d'arco tea everyday. Then vitamins and vegan shakes and then we double his pau d'arco intake by adding capsules.
YESTERDAY WAS THE HAPPIEST DAY WE'VE HAD SINCE THIS WHOLE ORDEAL BEGAN.
My dad was scheduled to have a portacath inserted Wednesday Jan.24th however his oncologist has CANCELLED HIS CHEMO!!!!
The radiologist couldn't see his tumor. he could clearly see the metal stents but nothing else. Also his blood work was amazing!!!!!!!!!!!!!!!!
My dads tumor measured 3.5 cm and now it can't be seen.
The oncologist was shocked and wants to see him in three months.
We're confused and want an MRI to make sure what he said was true.
Over all though yesterday was shocking. His oncologist was suprised he was still alive never mind that he seems to be healing himself!
The Oncologist said what ever we are doing we are doing it right!!!
Oh and my dads diabetes is gone his last blood reading was 5.1
DIET AND NUTRITION REALLY CAN HELP
God I hope these results continue to improve I can't imagine life for our family with out him HE IS THE BEST!
BTW, ever notice that once cancer is in your life you find out its always been there, it's all around you and that people you know, have just suffered silently. I hate cancer!