I'm leaning on you

[lindaf]

Dear Jan, I will pray tomorrow night for Jeff and every night. I am so glas you spoke your mind to the doctor. He should have given you hope, because there is always hope and miracles. This is such a hard thing for both of you to go through. I know everyone on this site is with you through this hard time. Take any help you can get. You know you would do the same for your friends as they want to do for you. Loving prayers, Linda

[Poohbear]

Jan,

I hope you get better care and compassion from the Dr's you seek a second opinion from! I'm proud of you for speaking your mind to the first oncologist as well. I agree that your husband needs to know the truth....the truth though is that he is very sick and it is serious but Dr.'s don't know everything and thus, there is ALWAYS hope!!

I pray for you often and will certainly be focused on that tomorrow night as well.

[dawn]

Jan,

I think I would look for a compassionate oncologist, there are some. When you have a battle to fight like Jeff does it can make all the difference. Maybe you can ask some people who have had chemo who their treating oncologist was. You need support, not someone who is negative.

I will be praying for you both tomorrow night.

God Bless and call upon the angels.

Dawn

[ariella]

Jan,

Sorry for entering so late, internet connection was down...

Thoughts and prayers with you,

Positive attitude has been proven to prolong life in even the worst cases of cancer..You sound like you're giving Jeff the most important gift you can give him now by not allowing the doctor's pessimism to contribute to his disease.

Ariella

[michiganjan]

doing terrible this morning. Go to Karmanos this afternoon. Don't want to go through another doctor talking to us like that last one did.

Michigan Jan

[Poohbear]

Jan,

I wish so much I could take the pain away and make things better for you!!!

Can you tell this new Dr right off something to the effect of, "Before we talk, I need to tell you that we are at a fragile place right now and we've not been treated with the compassion we need from some other Dr's. so while we want to know the facts we also want to believe there is always hope...please keep that in mind."

....Something to let him know how you are feeling and what you expect from him.

You can't change who the Dr is or how he reacts but especially if you tell him what you need from him and he doesn't follow through then that tells you a lot about him.

Hugs and prayers are being sent your way!

[MightyMouse]

Tonight is the evening that Jan said people would be praying for her and her husband Jeff at 8pm eastern time, US. I just wanted to post this as a reminder to those of you who wanted to participate in sending either your prayers or just good thoughts.

Nina

[Poohbear]

Jan,

Just wanted you to know I continue to pray for you and am getting ready to do so especially this hour!!

Let us know how this afternoon's appt went when you are up for it.

With Care and Concern,

Poohbear

[morgan617]

It is 8 o'clock eastern time. Please know how many prayers and good thoughts are out there for you. morgan

[michiganjan]

Thank you everyone for your prayers and all the posts of encouragement. It means a lot and I do not feel so much alone because of all of you.

We went to Karmanos yesterday. Basically we got the same prognosis and most likely they would treat with chemo. They also scoped his larynx and phaynx because sometimes this kind of cancer is found there too, but that was clear. Jeff has decided to go there for his care. On Monday he gets a liver biopsy on the very very slim chance that all those spots on his liver are something other than cancer--that would mean he could have more treatment choices. They did not offer him a liver biopsy at St. Joes. Karmanos also asked for his original biopsy slides so we went and got them and will take them in on Monday. Then on Wednesday, his case will be presented at a meeting of 50 doctors to see if any of them has any other opinions. I wonder where they find 50 docs to go to that meeting? Maybe a parcel of interns along with the surgeons, radiologists, and oncologists? Then we see the doctor to get the treatment plan and about a week later the chemo starts.

I am exhausted. We can get to Karmanos but not get home. Well, we did get home but it was horrible. The expressways you can't get onto heading west.

So...going back on monday for biopsy, then on Wed for treatment plan, then back again for a 2 hour class on chemo before starting treatment. Monday will be a long day. they keep him for 4 hours to watch for bleeding after the biopsy. There are risks to the biopys which are bleeding and infection but the risks are small.

The chemo they would use will be the most aggressive they have. They are concerned because Jeff has had high blood pressure all his life, and even though it has been ocntrolled by meds, they say it must have done some kidney damage even though his kidney function is normal there may be microscopic damage and the one chemo drug is very hard on the kidneys. Also one of the drugs causes neuropathy, but he does not have nureoopathy now. So the doc said in spite of the high blood pressure backround he would use this one drug anyway.

Guess what? I have high blood pressure? While at Karmanos I couldn't see print right and had a headache and felt like I was going down so I asked to have my BP taken. It was 145/70. I thought my goodness. Then last night it was 130/80 and this afternoon I had the same eye-head symptoms and took it again and it was 135/80. Stress I guess. Usually it is on the low side.

I have reflux symptoms really bad and the shakes and I am exhausted.

Michigan Jan

[Sunfish]

Jan -

I can't even imagine how exhausted you both must be but I am at least glad that your day at Karmanos was more productive than St. Joes. Even without a technical change in prognosis it just sounds like it was a more useful day that was more patient-focused...keep on hanging in there...

~melissa

[MightyMouse]

Jan, I can't say I'm surprised that your body is out of sorts--this is a heck of a lot of stress to go through.

I was heartening to learn that your visit today was less traumatic than to the previous oncologist. Oh, and I think those doctors must be at their weekly grand rounds (mandatory physician's meeting in many medical facilities), or they must have clinical case presentations as a regularly scheduled event. Good for Jeff! Maybe that'll mean they'll have some other options to present when you go again.

Nina

[blackwolf]

sorry for all your pain,

all my prayers,

peace and calm your way

blackwolf

[ernestine]

Hello Michiganjan, I wanted to send you and Jeff my prayers. I will Keep them

in my heart. The moon was full this last few evenings next time you see the moon

You will know that all the prayers here in north fla, are up there for to reach for.

God Bless and please take care of yourself. Jeff going to really need you.

Take care and God Bless. ern

[morgan617]

Jan and Jeff, I'm glad this visit was a little better. If the place you are going to is a hospital or campus type setting, they have meetings like this a lot. A doctor will present the case and then get lots of input from other doctors that can prove to be very helpful.

I am sure you are completely exhausted and need some rest. Hopefully you and Jeff can have a very quiet week end and get geared up for next week.

Take care of yourselves and many prayers are going out for you....morgan

[michiganjan]

I am being bombarded with information and don't know what to do with it!

First I was told a cancer center was better than our St. Joes Oncology and so we went to Karmanos and we do think it is better. We asked about clinical trials for Jeff and the doc said there are phase 1 and phase 2 trials and he knows of some of the various ones, but he would still start with the chemo he is recommnding. One of the chemo drugs is 25 years old! Can you imagine that the best thing they have for people in Jeff's stage is a 25 year old drug? It didn't work 25 years ago so it probably doesn't work very well now. Of course they will be adding 2 other drugs to it.

This morning at 6 a m friend called and woke me up and said sorry to call early because she was leaving for the day but she just heard about Jeff's cancer and she felt she had to tell me to find the doctors who are researching his particular kind of cancer and go there. She had a daughter who had terminal cancer of another type and finally took her to research drs. in California and she did get well against all odds.

I joined a list serv for people with EC (esophogal cancer). There are over 1,000 members. It seems to be a good support place. But I have had messsages from more than one of them telling me to find out about all possible clinical trials before starting the chemo, because being on the chemo eliminates him from participating in some trials. One man emailed me all the links necessary to find all the trials.

I do not want to track down the trials and read through them. It is hard enough just to take in what has happened. Jeff is satisfied that he will go to Karmanos and we don't need to look farther, and yet here come all these messages from people with EC saying . . . find those trials before you start treatment and see what they are because it might make a difference to how long he survives.

What am I going to do about that? I do not want to do that research and yet the people who are telling me to do it are not suggesting it lightly they are people who have been where Jeff is now and who are glad they chose that route.

This morning Jeff figured out how to use the new juicer I bought. So we made juice. Put in 1 pear, apple, yellow tomato, couple pieces of pineapple, a carrot, a beet, parsley, strawberries, celery, and cantelope. Forgot to add a potato. All ingredients were organic except pineapple. It wasn't bad tasting, just unusual and not too sweet. We each had a large glass. Will do this every a.m. He is drinking 3 cups of green tea a day, too.

I want to cook the black beans and brown rice today and start eating that. That is what my Korean neighbor said. Another person said to get wheat grass. Korean neighbor gave me a bottle of aloe juice.

Then I had an email from someone who thinks we should go to this place in the South where they will heal him with prayer and food.

We only have one shot at this. We can't make the wrong choice. Oh, also my dear friend brought me a protocal of some kind of supplement and diet. We read that and decided not for him.

And so we are juicing and he is drinking green tea and then will have chicken pot pie with gravy from the jar and a waffle with syrup and a shake to get calories. What an adventure in food this is turning out to be. At least he had a 2000 calorie day yesterday. The stretching the gastro did on the initial scope seems to have made it possible for him to get food down better. He needs 2000 calories every day.

I am fine turning down suggestions from people who think we can cure him with this or that protocal of food, tea or whatever. What bothers me is the messages from those people who have had stage 4 EC just like Jeff and who are saying that the cancer centers would want him as a patient because they want the money and that even a cancer center might not be as good as a trial and that his life or length of life depends on the right choice made right now. Again I don't want to read the trials. They just make me sick to do the research and yet that is what I should be doing but I am not so I feel I am failing him.

I just want a peaceful day or two until the liver biopsy on Monday. I have been on the go every day, all day, and now hat I can stay home a day it is a relief.

I pruned a bush this morning. Jeff says he is going to do pruning. But then he said to give him until after his treatment plan is formulated on Wed. and then if he doesn't want to prune, I can hirer a pruner, so I think that is reasonable.

I do not want to live without him. He is everything to me. Everything.

Michigan Jan

[Ernie]

Hi Jan,

Maybe you could sort in categories. You start to read the clinical trials that you have heard that work and if you have time you read the other ones.

What does Jeff feel about going on a clinical trial?

You're in my prayers

Ernie

[MightyMouse]

I agree with Ernie-- sort into categories such as "shown results", "possible results", and "no data".

If you're too overwhelmed to do the sorting/sifting, do you have a friend that could help you with that task??? If it were one of my friends, I would be glad to sit down and help--it's a tangible type of assistance. When my friend lost both of her twins shortly after birth last year, I felt like all I could do was listen and be empathetic...and would have jumped at the opportunity to do something to lighten her load, or her husband's. I did take care of her dog and cat a few times, and that helped me feel useful and helped me through the grieving process with them.

I hope that you will be able to make the best, most informed and fruitful choice for Jeff.

nina

[steph37822]

oops

[lindaf]

Jan, the two of you have so many decisions to make and it is such a horrible time. I can only imagine how you must feel right now. If any of these people with the same type of cancer are now cancer free, I would see what worked for them.Never give up-use your best judgement and keep praying and asking for answers from you doctors. I agree-I would ask the doctors what they would do if it were them. You and Jeff are in my prayers everyday. Linda