Update for 9-29-06

For about the fifth day in a row, I am feeling very good...no upset stomach. As Mary Anne mentioned, I see each day as a gift. As you might imagine, this kind of news, "It's Cancer", throws your whole life upside-down. Each time I think of something in the future, I tend to move away from it as the future seems so uncertain. However, I think it is positive thinking to continue to plan things in the future. I am a planner. Toward that end, we have invited all our children and grandchildren to come down to Bonaire this winter for a week. They are coming at different times so that we may be able to spend some quality time with each family. It will be quite a treat!

I am a believer that this is all in God's plan (that does not mean I have to like the plan but I accept it). I have not had any "Why me?" or anger-with-God issues to deal with. There is a reason why God allowed this to happen but like so many other things, it is hard for us to see that. We just don't have the big picture. The cards and prays from so many people have truly been humbling. I do feel so wrapped in prayer and love. Thanks to each of you who care and are praying. My love goes to each of you!

Update for 9-26-06

After a lot of talking on the way home in the car Saturday, Joe has decided at this point not to pursue Chemo. I totally agree with this decision. He is still feeling so well except for the queezy stomach and for now, we are going to enjoy the quality days he has. We have arranged a trip to Utah to see the National Parks which Joe has wanted to do for the last several years but we couldn't fit it in our schedule. We were going to go with Ben and Marilyn, our long time Marriage Encounter friends, but they had problems with their schedule and we didn't want to put it off so we asked Ed and Jayne, our next door neighbors, and they said yes. They are also following the Vegan diet so that will make it easier for us. Our daughter Karen will meet us on the last weekend in Las Vegas for a few days. Joe had never been there and although we don't drink or gamble it is a fascinating place to visit. We continue to be strengthened by the prayers of so many and thank you for your faithfulness. We know this is in God's plan and somehow He will use it to good. We still pray for a miracle. Yesterday Joe started taking Mangostein juice as well as the Vegan diet as it is supposed to flush out the toxins. Last night at dinner he said his stomach felt better than it had in a long long time. By the way he did have steak and baked potato and bananas foster for dessert last Friday and felt fine afterward and enjoyed the treat. We are going to post this blog on the website for cholangiocarcinoma patients and families. I have gotten a lot of comfort and encouragment from reading their blogs and wanted to be able to share with them. Please continue to pray and know we are lifted up by all the cards and calls. God Bless Mary Anne

Update for 9-22-06

Just returned from seeing the doctor at Mayo. He didn't tell us anything new. The liver tumor has grown some as have the lung tumors. He feel our best option is systemic chemo using Gemcitibine and Xeloda. He said we could wait a few months if we wanted to take some trips. He also said we could look at local chemoembolization which would go directly to the tumor in the liver. It would require a few hospital days because of the pain and would do nothing for the metastases. We will have to talk to the Dr. at Northwestern and see what she has to say. He continues to feel just about the same and today was not as hard as I expected but I don't have cancer. Joe is being such a trooper. We are going to take a break from the vegan diet and he is going to have steak tonight. We will head home tomorrow. Thanks again to all of you. Don't stop praying. We know God still has His hand in this. God Bless Mary Anne

Because we both blog here -- no picture shows up on this first page. So here's Joe -- Occasionally we'll put the picture here so you don't have to scroll down to see!

Update for 9-21-06

We had a good day at Mayo Clinic today. Tests were on time althought the last one wasnt' til noon and Joe had to fast. Cath and I caught up on everything and played some cards. She won, by the way. We see the doctor tomorrow morning and we hope to get some hopeful news. We know the treatment for this type of cancer is not promising but we are praying that the nutrition program and the prayers will work a miracle. We rely on God's word that he cares for his people and we are grateful that so many of His people ar praying for Joe and me. One of our favorite verses is Phil 4 :13 -- I can do all things through Christ who gives me strength. That was also one of my Mom's favorites, and I learned it from her many years ago. Take care and don't give up on God. Whatever, we are going to make it. God Bless. Mary Anne

Update for 9-13-06

Hi All, We finally heard from Mayo with a little help from my sister and the cancer doctor that treated my Mom 20 years ago there. We have an appointment for next Thursday the 21st for tests and then we see the doctor on Friday the 22nd. Joe has to run around and get slides and films and reports Friday and Monday but at least we are moving. My sister Cath and her husband Tim have an empty nest in Rochester now so we can stay with them. We will be leaving Jake (the dog) with Cassie since he is 12 now and can't wait all day for us to come home. Thanks for all your prayers that got us in and we will keep you posted with whatver we hear. God Bless Mary Anne

Update for 9-7-06

Well, we heard from Dr. Mulcahy at Northwestern last night. she said the scans showed a little growth in the two lung lesions but the liver looked about the same. No new things appeared which was good. She said a second opinion would be good and referred us to Mayo's. We called this morning and the best we could do was they would give the info to the oncologist and we would hear back in 4-5 business days. Nothing goes fast in this. We continue to eat healthy and pray like crazy. Thanks for your support. We will update when we know more. Mary Anne

Update for 9-1-06

I had 2 scans on Thursday but we won't have results until probably next Wednesday. We are going to our son Michael's house in Ohio for the weekend and, of course, I will be building stuff for him but taking time out to watch Notre Dame on Saturday. We continue to do well even tho some options are being eliminated. We are checking into clinical trials in several states. Will update when we have more.

Update for 8-28-06

We just returned from Northwestern and we were disappointed in the news. The lesion in the lung is cancer which means Joe has a small lesion in each lung. That means surgery is out. He will have an MRI and a CT scan of his chest hopefully this week to see the growth in the last 6 weeks since the last one. Possible options for treatment are radiation directly to that part of the liver through the femoral artery (like they do an angiogram) or chemo in the same way. As we said before, systemic chemo to the whole body does not help this kind of cancer. There are still side effects to these two treatments. We haven't made a decision and won't until we see the scans. There is one clinical trial but it is only in the first phase. We continue to need your prayers and today was not nearly as hard as the first time as we had food and reading material.
Joe continues to feel well although some of his blood work for liver is elevated now. Thanks you all so much for your support and cards. We are blown away by the caring of friends and relatives. God Bless all of you. Mary Anne

Update for 8-25-06

Yesterday was the lung biopsy. all went well even tho Joe did get a slight pneumothorax, which means some air got between the lining of the lung and th lung itself. This caused us to stay a few extra hours to take x-rays every hour to be sure it wasn't getting any bigger. By 3 they felt it was diminishing and released him. Again the procedure was almost painless althought he was given Versed but it didn't work so he wasn't all goofy afterwards. Karen, our daughter, came down with us and we had some quality time together while we waited.
Joe is feeling fine today and the whole family was together for a new family picture. Last one was two years ago. Michael and family leave for downtown tomorrow as Mike is doing the Chicago Triathlon on Sunday. Karen heads back to AZ early Sunday. We have had a wonderful week with everyone and glad Joe has felt so good while they were here.
We have an appointment with the oncologist Monday at noon.
We will post when we get home. Again thanks for all your prayers. Mary Anne

Update for 8-20-06

I have been overwhelmed and humbled by the number of cards and phone calls. The number of people that are praying for me has left me speechless....(can you believe that?). Your thoughtfulness has been a great boost to my morale. Know that I am feeling well. The next test will be a lung biopsy on Thursday the 24th. We see the Oncologist again on Monday the 28th and should have the results by then. I suspect that the results will dictate the treatment that they suggest.

Obviously, I have learned how to type in my blog AND post a picture!!!

Update for 8-18-06

Today is Friday the 18th and we are expecting our out of town kids and grandkids in tonight. They will be with us for a week so we will be busy making memories at the water park, DuPage Childrens Museum, the beach and just hanging out. Our son Michael will be doing the Chicago Triathlon next Sunday and Karen will treat the ladies of the famly to a Mary Kay facial on Tuesday. She has become a consultant in the last few months and really enjoys it. Cassie did it for 17 years or so but has now moved on.
Joe continues to feel well, walking everyday and eating so healthy. We actually are having his favorite meal tonight - pizza with a few alterations. Whole wheat base with roasted vegetables. Life is really good right now and we feel the strength of your prayers so much. The cards and emails keep flowing in. Hope you can remember to check the blog for updates. Take care and God Bless
Mary Anne

Update for 8-15-06

We heard from Northwestern today and the lung biopsy is scheduled for Thursday the 24th of August at 9 A.M. We probably won't have any results from this until we see Dr. Mulcahy on the 28th. So from now til then we will just keep drinking carrot jiuce and eating raw (as they say) It really is good food and filling. Joe has received so many wonderful cards and emails it has really made him feel good. He still has no pain and we are getting lots of info about cancer. Thanks to all of you who are praying and please keep it up. God Bless, Mary Anne
Pretty soon I'll teach Joe how to do this.!!!

Update for 8-14-06

We just returned from the visit with Dr. Mary Mulcahy at Northwestern. Here is what we know. They want to try and do a lung biopsy this week to see if those lesions are cancer. That will determine what else can be done. She reviewed the films of the cat scan and PET scan. She believes this is bile duct cancer even tho the pancreas is clear. She said this bile duct cancer is the sameas pancreatic cancer in treatment. Not very treatable systemically with Chemo to the whole body. However there are several other options. If lung is involved they can burn the lesions out of the lung and treat the liver cancer with what is called radiofrequency oblation therapy going in the same way as you would for an angiogram. This is a rare type of cancer and so there aren't a lot of clinical trials going on.
We were disappointed in what she said but it is what we expected. Pleae continue to pray. Today was a long day having to wait 3 hours to see her.

Update for 8-11-06

We have an appointment at Northwestern on Monday We will pass on the info from that as soon as we get home.
As some of you may know we are leaders in the Caring Hearts and Hands ministry from our church. Well, our assistant leaders, Bob and Jan Wilkins came over yesterday with a prayer blanket. Caring Hearts and Hands from the main CCC Church makes these and the women pray while they are sewing. It will be very special to us always as a reminder how many are praying.
Also our niece Maggie Marshall sent us a bottle of NONI juice. She has a friend who had pancreatic cancer and is a survivor of 2 1/2 years. Thanks so much Maggie.
We are off to the hotrods tonight, one of our infrequent but fun things to do. We take turns picking cars and get points for placing. We won't be eating any of the junk food there but it will be great fun anyway.

Update for 8-10-06

We went to the oncologist, Dr. Gustafson yesterday. The blood work came back that the alpha feta protein was normal level,which says it is not primary liver cancer.
The second liver biopsy confirmed that also and that it is biliary pancreatic carcinoma. That means bile duct and/or pancreas. Our next move is to go to Northwestern to see Dr.Mary McCarthy who is an oncologist who specializes in GI tumors (tumors of the gastrointestinal tract) We hope to hear from her this afternoon about an appointment. We will bring her all the original films of cat scans and slides of the liver biopsy. She will review and take them to the tumor board to see what the options are and whether surgery is possible. Dr. Gustafson thinks we should biopsy the lung areas to be sure of what they are before we go in and do major surgery removing the lobe of the liver and looking eyeball for the primary. Nothing elso lit up on the PET scan for the pancreas or the bile duct.

This is not what we had hoped for but it is possible to live without your lobe of the liver and your pancreas(which suprised me). We also discussed the nutrition program from Halleluia acres and she said go ahead, For sure get off coke and sugar and alcohol.

Joe started walking with Ed this morning and we have begun to eat mostly raw fruits and vegetables with 15%of food cooked.We are off any animal proteins and dairy products. We both feel positive that his could really build the immune system and fight the cancer. Joe is still feeling just fine except for the little queezyness in his stomach.

Again if you wish to email Joe the correct email is cookieman800@comcast.net. We so appreciate all your cards and calls. We do tend to nap in the afternoon around 3 but any other time is fine to call.
I will let you know when our next appointment is and we hope it will be within the week.

Thanks for your prayers and keep them up. Love ya Mary Anne