michiganjan

I have hyperadregenic POTS. I take Sectral (name brand) beta blocker. The beta blockers as a class slow my heart rate and make it more mangaeable. The calcium channel blockers have no effect on my heart rate at all.

I have tried many beta blockers and some work better for me than others. One that worked well for a number of years gave me intorable symptoms when I first started taking it. I could not breathe when walking fast--it was as if my heart and lungs failed to keep up with that level of activity. However that phase did pass. The doctor I had at the time explained that my body needed an adjustment period in order to learn to metabolize the drug and to figure out what to do with it.

I think my initial reaction might have been better if I had taken a tiny tiny dose to begin with. You are already starting with a tiny tiny dose (very wise of you!) so the one you are taking may not be for you. My experience has been that different beta blockers have different side effects and while one might not work, another might. It has been trial and error for me to find one I can tolerate and that does the job.

Michigan Jan

Julie, I am sorry to hear that you need surgery. Do you know yet when you are going to do this? On the other hand, if it gets you where you need to go then you will be better off in the long run.

It is too bad about being denied disability. You have a clear need. Keep on fighting and you will get where you need to go.

Michigan Jan

Oh wow! I have not been on my computer since I posted the beginning of this topic. And so now I visit and I am greeted by a personal message of encouragement from Nina. Thank you Nina. And I feel so supported by reading everyone's replies. Jeff's sister and brother-in-law were here for 2 days and left today. Now his other sister is with us for the rest of the week.

I am amazed by the people who are praying for Jeff or sending healing energy his way. His sister who is her now is a Buddist nun and her community is sending him metta (loving kindness) and one of my friends who is new age in her views went outside at lunch where she works with another new ager who is a healer and they held a healing for Jeff. And now Lois is sending him prayers in the Jewish tradition.(Thank you, Lois!) He got a card with several women's signatures on it from a Woman's Prayer Group (Born Again Christian) at a church we never heard of. I finally did track it down--I realized it is a church that a good friend attends, so I was able to write them a note and thank them. And because Jeff has been such an active volunteer with the local Salvation Army, they have been praying for him. What a mix of prayer, metta, and healing energy is coming his way! I will never be able to keep up with it to thank everyone. But you all are making me (and him) feel so blessed. And I do believe that it has made a difference.

Stephanie, I once did use Overature to promote a book I had written and you are right. It did work well. I have managed to register with some search engines and I do have keyword meta tags on the index page. I am going to look into whatever name Overature has changed to and try it when I get time.

Emily, Ernie, Melissa, Steph, and Buddy Lee's Wife. I think maybe it is good the puzzles do not take off right away. Chemo is coming up on Thursday if blood counts are good, so while we still need to do something to get going, it can be slow going. I do not want to post a link to my webpage here. It is a commercial site. If anyone does want the address and emails me at writeplace@comcast.net I will send it. The UPS truck did roll in here this morning and bring 90 cartons of puzzles. I think that means that the bulk of the inventory must be at the warehouse by now. I haven't had time to check. I hope to find the time tommorrow. Had to get Jeff to a dermatologist today for very large area of strange looking skin. Turns out he has an overgrowth of a fungus due to the chemo, so he now has a prescription cream. The dermatologist said "Don't worry. This will control it." That was a relief.

Thanks so much to everyone for your support. It really helps.

Michigan Jan

I went to my neighbor's to water her flowers this morning and it was so humid and close that my asthma decided to start up. I did not finish the flowers and came home to get in the air-conditioning. Chest still hurts. Because of my POTS I do not take any puffers. They will run my heart and make me extremely nervous and fearful and trembly. So I have to depend on a course of preventative meds year round. Luckily because of this, I don't have many symptoms of allergy very often. So I think this will pass if I just stay inside.

Jeff's sister and husband come today to stay until Monday. Tomorrow, his other sister comes to stay until Thursday. I want to make pies and do some cooking, but just don't want to move because of the way my chest feels. As it is, I will have to ask Jeff to finish those flowers I didn't get to.

Right now Jeff is feeling pretty good. He just did the grocery shopping. He hasn't missed mowing the lawn even once since his diagnosis of cancer. Yesterday we went to his oncologist and he had blood taken and his med-a-port certified as ready to use. His blood counts were low but not any lower than the doctor expected. He goes again Thursday for a blood count and if the counts are higher than they were yesterday, he will have round 2 of the chemo. This time the doctor said he would lower the dose of the 5FU because Jeff had some really bad mouth sores and the doctor said lowering the dose of that med would help them not be so bad this time around. When Jeff told the doctor that he didn't want his dose lowered if it meant less help fighting the cancer, the doctor said it would'nt effect his treatment to lower the dose.

To all of you who have prayed for him and are sending thoughts of healing his way, please keep going. He seems to have benefitted from from the first round of chemo. He still has the ache where the original tumor was located but it is not as bad. I think everyone who was praying for him helped carry him through.

I had quite a day this week, in that I hired a new houskeeper and she liked working here and we liked having her so she will clean for us. While she was here cleaning, the window washers showed up to do the outside windows (they come 4 times a year) and my friend's son who is a contractor came the same day to replace some rotten wood on the house and gate and the landscaper brought his crew to prune all the shrubs. Next week the outside of the house is getting painted. It was just a ton of stuff that got done real fast and it made me feel better.

However, now I am depressed again. The doctor keeps stressing that all treatment for Jeff is pallative--just buying time by keeping the cancer in check. I am just so sad.

And the puzzles (Why on Earth did I ever want to start a business!) are made and will arrive this week. I have the website up and running but it is basicallly a dead site since it has not been picked up by the search engines and I have done no advertising. I can't see how I am ever going to make a success of that now, especially when it doesn't even seem important. All I really want is Jeff to be well and be with me.

Michigan Jan

When I moved into my current house, 15 years ago, I moved from a smaller house with carpet and lineolum type flooring to a large house with all hardwood and tile floors. In the old house I was used to walking around in my socks. After I moved I developed pain in both heels that kept on getting worse. Two things got rid of it. 1. wearing those rubbery, cushioned heel cups in my shoes and 2. wearing shoes in the house!

In the new place, I walked more as the distance between things like the bedroom and kitchen was farther and the hard floors were jaring.

Since I have taken to wearing some kind of cushioned foorwear in the house, I have not had this problem.

Just a thought.

Michigan Jan

I feel for you Nina. I would be at a loss without my AC in the summer. We have had a power outtage during a very hot time and I did manage to survive without getting sick by staying in the basement which was in the 70s.

The only thing I can think of for you to do is to go somewhere else until it is fixed. Once I spent an afternoon sitting in the waiting room of an emergency room. Not there for an emergency, just there for the cool air.

Michigan Jan

Good going, Julie.

I know you can work out the details. And we both know that Dr. Grubb knows what he is doing when it comes to POTS.

I once rewrote a football book for kids and one thing you do in football is you plan the play and then you play the plan. You have already planned the play and now you are ready to play it. You will soon know a lot more about what is going on.

hugs,

Michigan Jan

How long have you been on the Zoloft? I have tried Prozac, Paxil, and lexapro for my POTs over the years. These kinds of drugs can take a long time to adjust to. I never could get going on Prozac and it took 3 months before I got over my initial reaction to Paxil. It took Lexapro a month before it helped.

One thing to keep in mind is that sometimes you have a better long term result in getting established on one of these drugs if you take the dose low and slow at the beginning. I had a real rodeo of symptoms when I started Paxil such as resting heart rates of 180, really weird thinking--was just fascinated thinking about all the different kinds of pills we had in the house and wondered if I would just suddenly decide to take them all at once--had to have my family hide everything from me before I could stop thinking abou them. All those things did pass but it took three to four weeks on the Paxil for it to settle down. Prozac made me very angry right away. I called up my doctor and yelled and cussed and said words that I wouldn't have believed could come out of my mouth. She said to stop taking it immediately.

Both of the above drugs I started on what my doctor conisdered to be a very low dose.

When I started the lexapro I took a very low dose-- 1/4 of a pill. After a few days I was sick to my stomach and had some other symptoms. So I quit.

Later I restarted lexapro, this time on my own terms. I took 1/8 of a pill a day for a month. No bad effects but about the 1 month point, I began to feel some good effects of the medicine. My thinking got clearer and I was less tired.

The gist of this message is: After your body gets used to the drug some of your side effects may go away, but you may be able to avoid going through this period of ill effects if you take it extremely low and slow.

Good luck and post on how you are doing.

Michigan Jan

Sophia,

I am so sorry to hear that your brother-in-law has died. I don't know much about the effects of crying and greiving on the autonomic nervous system, but I have cried a lot lately over my husband's cancer. I cry some every day. Big, hard, heart-wrenching crying surely wears me out. It's like first there is this big shuddering, wrenching outpouring of grief and then when it has come out tbere is complete tiredness.

I have had many more arythmias since Jeff's diagnosis.

I think in spite of having POTS, it is best to just let it all come out whenever and however it happens. I think it is healthiest that it come out instead of being held inside--that must surely have a negative effect, too. At least when it comes out, that much of it is out and then take the rest that follows.

Michigan Jan

who is learning more about grief than she ever wanted to know.

Have you been on a heart monitor? They have them these days that can stay on for many days and catch any events that might happen. That way you would have what is happening identified and then an electrophysiologist can tell you if these things are harmful or not.

My advice is to see an electrophysiologist (cardiologist) as soon as you can and even your regular doctor should be able to set you up to be monitored even as you wait for you appointment. Get damanding and get this taken care of.

Michigan Jan

Why on Earth would anyone with dysautonomia get on an amusement park ride? I cannot fatham it.

Michigan Jan

Julie,

I like your plan. I am glad you have come up with such a good one--just address everything until it all gets resolved.

Thank you for all you caring and sympathy.

Michigan Jan

Thanks Sue and Nina for your caring messages.

Sue

Yes, we are going to Karmanos. Are you near there? I thought for some reason that you are out west! Now where did I get that idea? If I have your email, I can email you to tell you when we will be there.

Jeff has completed his first round of chemo. It was rough. Overnight in the hospital at Karmanos for 2 kinds of chemo, then sent home with a pump attached for 5 days of a third kind. The last 5 days were pretty bad but they could have been worse. Yesterday our daughter went with him back to Karmanos and he got the pump off and the picc line pulled out and had a minor surgical procedure to implant a medi-port in his chest for future chemo treatments. At Karmanos everyone is super to deal with but things take a long, long time, so an offer of a visit during one of those long, long times is lovely!

So now there is not much to do until his next doctor appointment in a few days. I hope we don't need to run him in due to problems before then. He did cut the grass today on the riding mower. Our son-in-law sat outside on the tailgate of his and Rachel's pick-up truck and waited unitl each time he heard the mower stop, then went down to the curb where the mulch cans were to meet Jeff and the mower and empty the big grass bags on the mower into the cans. Our son-in-law is blind but he got the routine down real fast. Jeff was told not to lift until at least 2 days after the port is in.

Today Jeff got up and ate two pieces of toast with butter and peanut butter. That seemed like a miracle to me. First solid food in days. He is doing better drinking fluids, too. Now he is wiped out. I hope we have a peaceful time now until chemo round 2.

Michigan Jan

I love what you did with listing the hallmarks of the personality disorder and then applying it to doctors who tell us we are crazy. That gave me a real chuckle and I certainly haven't been amused at all lately.

Michigan Jan

Had a bad day yesterday. About 10 a.m. Jeff thought he might be having the very first stirrings of nausea so he took one of the pills the doctor had ordered for him. Jeff was told to take a pill at the very first sign of nausea, not to wait. So he did.

The pill was compazine.

He was on the couch all day and just drifting in and out and felt so extremely weak--didn't want to get up, drink, eat. He must get to 2000 calories each day and right now after the chemo he must have the 10-12 glasses of water and he must rinse his mouth with salt water every 2 hours. He couldn't do any of that.

Finally at about 7 o click I called his doctor who said the compazine could do that and not to take it unless he is truly nauseas. I asked him to change the anti nausea drug and the doc said they all have side effects, so if he gets the nausea he will have to take the compazine again and if it is bad, he will then change the med. He also stressed Jeff MUST have those 2000 calories a day and the water. I decided that if he has to take it again, we will divide it, or use one of the suppositories and cut it in half. Can always take more if a smaller amount doesn't work.

Jeff finally did recover a bit and we had to stuff him to make up for all the lost calories, but managed to finish the day a bit less than 2000 calories. This morning he is better. WOW! I am the champion of drug reactions. Now Jeff has experienced one.

Let's hope today is better. I just want to stay home and rest for a few days, but Jeff wants to go to church this morning and we need groceries and our daughter is coming this afternoon. Maybe I will make her go to the grocery and let Jeff go to church alone. He does seem quite able. However, the service is dedicated to the two of us, so I feel like I should go. Will see. I was so dispared yesterday. I am just tired from cancer and the fight is just beginning.

Michigan Jan

Jessica,

Right now I know exactly what it is like to be a tired caregiver with POTS.

You have my sympathy.How awful to have your baby so sick like that. I am sending thoughts and prayers for a good resolution.

Hang in there. We are tougher than we think.

Michigan Jan

Jeff had his first chemo overnight in hospital last night. He is home now and chemo still going on. He had two kinds of chemo in hospital and now wears a pump in a fammy pack putting in 5 days of something called FU.

I have had such a bad week. Wednesday night I spent the night in ER for me. This pain in my chest has been so bad and I may or may not have EDS hypermobility type so not too much risk there for aorta dissecting, but my Doc said to go. I went but told them in emergency that I had to be home in the the morning to take my husband in for his chemo. They did an EKG and took a blood test and did a chest x-ray. Then three hours later another blood test. I aruged wiht the emergency room doc telling him I was going home after the second blood test. He said a chest x-ray was not good enough to tell about the aorta and I would need to stay the morning for a MRI. However, after the second blood test came back, he came in all smiles and said he would let me go. Both blood tests were good, so no heart attack. He said he say he read my chest x-ray and he has never in his life seen such a skinny aorta, so if it was enlarging, he would have been able to see it, so home I went after a 3 hour nap between blood tests. Not bad timing for going to ER with chest pains. I left home about 9:30 p.m. and was back home in bed with Jeff by 4 a.m. so slept a couple of hours before going to the hospital for Jeff's chemo.

Wow was I tired last night. I finally left Jeff in his room at 9 p.m. and came home. I could have stayed all night with him but our son went to the hospital shortly after I left and sat with him a couple of hours and I came home and slept all night and went back this morning to get him.

Now I am determined to get an endoscopy too. My chest symptoms are exactly the same as Jeff's. And they ruled out heart cause and were telling me it is gastric. I do have a close relative with esophgeal cancer. I did have a scope done almost 3 years ago which was good, but if I get another one, then I would have checked out all the possiblities of the terrible pain and maybe I can better get on with being a good caretaker.

Can you imagine us both having the same thing? I just can't.

Anyway, for now we are both home, Jeff does not feel sick and I will have a nap. Our daughter and son-in-law are coming for a few days on Sunday and our son will bring the grandkids over. Jeff can have the little kids now, but in another week, he may not be able to be around them as that is when his blood will likely go low, red and white. Then 2 weeks for it to rebuild and then another round of chemo.

Thanks for support. Much support is needed right now.

Michigan Jan

I am checking in because I feel like checking in. I feel that all of you are friends and I feel like staying connected.

We had a long day. Started with Jeff's dr appointmen this morning. The liver biopsy was inconclusive--meaning they did not get any cancerous cells. The doc offered Jeff a core biopsy, at the same time stating tha the spots on the liver are surely the cancer even though they didn't get any cancer cells. Jeff chose to start treatmemt as soon as possible, so we went down to radiology and they put a picc line in. This is a central line through his arm that runs inside a vein to the heart. Tomorow morning they will admit him to the hospital and give him chemo--a combo of 2 drugs and some anti-nausea medicine. If all goes well he will go home the next day wearing a 5-day pack of a third chemo drug. Thenj he will have 2 or 3 (can't remember ) weeks off, then a second round like the first. They have plans for 3 rounds. He will have scans after the second round to see what happens.

I am tired. I drove home today just for practice and I will drive him down in the morning for practice. Then I can get home alone tomorrow night and back the next morning to get him. Our son said he would go visit tomorrow evening.

It was just another terrible day. We are both scared but only thing to do is get on with it and hope it helps.

If I could just get rid of this pain in my chest. I do think it is acid reflux or stress or both. I have been taking antacid and simethicone and upped my daily dose of zantac. It actually does go away or lessens for a little while, then comes back.

We just got the first statement of charges from the initial scopes. Our insurance will be very helpful, but our part of that doctor bill is almost $400.00. I told Jeff that he had best get to work to pay his bills. He laughed and handed me a postcard from a nearby Montessori school and told me to go sell them some puzzles. I think I am finally glad to have the puzzles to work on. Creating them was one of the most rewarding and exciting things I have ever done. Then, I went to just not caring. Now it may be good to have them, even though they will be a tremendous challenge.

Goodnight all

Michigan Jan

Thank you for asking. It is so good to not be forgotten right now. Monday, Jeff had a liver biopsy in four places. This was done just on the very unusual chance that all the spots on his liver are not cancer, in which case his treatment choices would change. That is nearly impossible. However, they wanted to be sure. The biopsy was no big deal. However it was 100 degrees outside and I knew if I walked to the car in the structure I would get heat sick and I have to stay okay to go and do with him. So they took him most of the way to the car in a wheelchair and then he drove back to the doors to pick me up, having cooled the car. That made me feel bad. I should have picked him up.

Tomorrow morning we go back to Karmanos for his appointment, the purpose of which is to set up his treatment. This appointment follows a meeting at which his records and scans and biopsies are read by 50 doctors. It will be chemo and he is anxious to get started. I hope they don't drop any more bombs on us. It has been just one after another, first finding the cancer, then finding it has spread, now who knows?

He has a white spot on his tongue and a white area behind it to the back of his throat. I will ask them to look at it tomorrow. When were there for the biopsy on Monday, the nurse looked at it and said she didn't know. But the two cancer docs did look in his mouth last Wednesday and didn't make any comment.

He watered all the plants today. Yesterday he mowed. I just loved sitting here in the house and seeing him on that mower--he loves yardwork. It was such a normal thing and I wonder if anything will ever be normal again.

I am just very sad. I am even having the same symptoms he had. I have had GERD for many years. Was scoped about 2 years ago by the same Doc that found Jeff's cancer. At the time the gastro scoped me, he told me I would never need to be scoped again for my GERD. I guess that if you have had GERD for 20 years and still have no signs of Barrett's esophogus (precourser to cancer) at age 56 (my age when scoped) you probably won't live long enough to die of esophogeal cancer. However, I don't know why he told me that, so I may be in for a scoping myself. I will call the gastro and ask him in a few days. I sure don't want to mess with that now. We are busy enough.

If that isn't enough, Jeff wants me to go ahead with the puzzles. We were on the brink of starting a business together when we got his diagnosis. I figured out how to put stories on jigsaw puzzles to make reading more fun and to do it in such a way that causes kids reading the puzzles to practice reading skills and learn about language. (I am a language arts writer). I applied for a patent, made prototypes, tested them on kids in schools, wrote some puzzles, hired artists to do paintings, and the puzzles and box covers were printed and sitting in the factory due to run the day after Jeff had his scope. When I got his diagnosis I called the factory and cancelled the run. All the fun of bringing this product out just died. It was something we were going to do together. Now he has told me to go ahead and run them. They are back in the factory line-up for next week.

I will send them to a warehouse where they will collect rent unless they sell and they won't sell if I don't sell them. I have brochures and a website almost ready to launch. My heart isn't in it. But our friends are all telling us we need to have something in our lives that is not cancer.

I'm telling you that once you get a diagnosis like his, cancer is your whole life. It is terrible. Jeff just came in and said he feels bad and so we are going to bed. He has not said this before. He was leaning on my desk talking to me. He never does that. Says he is tired. They will take his blood in the a.m. 10 days ago he was 10.5 hemoglobin. I hope he is not a lot lower now and that is why he feels bad. I am so worried.

Michigan Jan

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

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

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

thank you for your support everyone. It means a lot right now. Sunfish, We will be praying for Jeff specifically on Wednesday night at 8 p.m. - 9 Eastern Time. Anyone who joins in then is appreciated, but I appreciate prayers any time.

Today we went to the oncologist. He looked at the CT scans with us. The cancer has not grown across the esphogus but down into the stomach and the raw area has been bleeding and Jeff is a bit anemic. He has several areas in his liver and the lymph nodes are most likely affected. His stomach looks very small. Part of it is taken up with the tumor that has grown down there and the rest of it is squished by the neighboring lymph nodes. We were told that surgery and radiation is not an option and the only treatment is chemo which he can start either Friday or Monday.

We go to a cancer hospital on Wed for a second opinion. There we will see a team of oncologist, surgeon, and radiologist and see what approach they would take. Then he can choose.

I yelled at the oncologist for saying that there is no cure. I actually sat right there in the corner and said to the Doc "I am very angry at you for telling my husband that there is no possible cure for this." I think it is cruel to take away a person's hope and you should not do that to a person. You don't know what has been in my husband's mind. He came in here thinking he was going to be treated and get well and you just took that from him and you should not have done that." The Doctor said this isn't about you . . . your husband should know the truth. I said he could know the truth and get his questions answered but you can't just tell a person it is impossible to get well. What is the point of treating them?

Then the doc and my husband talked a bit and then the doc said I think I need to bring down the hostility level in here. I said "I am not hostile. I am pi--ed as He-- at you."

After the appointment, we all walked out in the hall. I said to the doctor, "Many people are afraid of doctors, they think if they complain or speak their mind their quality of care will suffer. I want you to know I am not afraid of doctors. I was raised by two of them and after we get our second opinion we may indeed come back here for treatment but I am still mad at you for this."

Can you imagine it? How many people yell at the oncologist on their first appointment like that. I think it really suprised him. My husband was rolling his eyes at me when I was telling the Doc how I felt.

I could have cried looking at those scans and seeing that stomach. It was terrible.

The oncologist also said this was fast growing, however he said that the fast growing ones respond the best to chemo.

Friends came over tonight WE actually enjoyed the visit. Amazing. My chest has stopped hurting for now. Maybe I let all that pain fly at the oncologist.

Michigan Jan

Today we drove to Toledo (must have gone right by Julie's!) to meet out daughter and her husband for Father Day lunch at a hOme Town Buffet. I startede having big palpations during dinner. I have had a pain in the middle of my chest for last 2 weeks and my whole gastro-intestional system is upset. My house is messy. I do not want to clean it up. I do not want to clean or cook. I think a messy house is depressing but just don't want to touch it because I feel so bad physically. Last night the mess must have bothered Jeff because he cleaned up the kitchen. Made mee feel bad I didn't do it. When we got home from Toledo this afternoon we both took a nap and I heard a mower running in our yard. Got up to look and my neighbor was cutting our grass. I went out and told her she didn't know what she was doing in that she obviously doesn't realize how big the yard is as she was uising her power mower you walk behind. She looked all in and she agreed that I was right she didn't have a clue until she got started. I told her if she felt she had to mow, I would get her the keys to Jeff's big mower but she said she would not use it. The man across the street already offered his son who does mowing to cut it whenever Jeff can't or doesn't want to. So I have half a back yard mowed. Jeff thinks he is going to finish it. But I think I will have to call in Andrew.

Don't know why I am writing about such a silly thing. I feel very alone. Jeff doesn't feel good. He did eat some lunch at the restaurant and manage to keep it down--probably a result of the gastro doc stretching the esophogus when he did the scope. But he is just full of discomfort and aches around his belly. Will see the oncologist tomorrow afternoon for the first time to map out a treatment plan.

My whole system is screaming out I just can't do this! I did go to the grocery store alone last night and get some things and managed it but today I am just not much functional. Chest pain too bad to do anything. Should make dinner but don't want to eat.

so I am leaning on everyone very hard righ tnow.

Michigan Jan

Okay,

I am not doing real well now. It is a good feeling to read all the posts that you are all sending good wishes our way. If anyone would like to do a job for me that I don't feel like doing right now, I would like to have as many people as possible praying for both of us at the same time. Like a vigil for a specified length of time on a sepcified date at say, Eastern Time. Perhaps in the evening and perhaps this coming week. Would any one take this on and organize it? I did this a few years ago for Jonathan and He later reported that it meant a lot and that he felt the support during the time we al prayed. I think I did it on a Sunday night for 2 hours. Ane everyone on the NDRF forum (this is where I set it up) went to all their possible prayer chains and got them all to pray during that specified time and with everyone asking everyone they could, it spread and we ended up with over 200 people praying at the same time and maybe more. It would be pray for Jeff that he gets well and pray for me that I can stay strong.

When my parents both died several years ago I feel apart. I can't do that now, and yet I feel alone an dfrightened and I feel no motivation to eat breakfast now, nor to go out and ride my bike and i have a persistant pain in the middle of my chest and I have the shakes. I also don't know where he should have treatment. St. Joes or U of M. I know a couple of people who say U of M is tops and they credit U of M for saving them from cancer, but St. Joes is familiar and the oncologist at St. Joes certainly knows everything going on at U of M. I just don't want to make the wrong choice.

Thank you Nina an dJulie for the personal message. When I logged on there it was, one yesterday and one todya. did not know such a thing existed on this site.

Michigan Jan, who can feel myself sinking . . .