Update for 10-29-06

Sunday
We are having a wonderful time in North Carolina with our dear friends the Guenthers who moved here a year ago, the Carnevales who we traveled here with and Julie Eacott, a long time friend from our Marriage Encounter days. We have laughed a lot, watch old videos of us years ago and just caught up with each other. Friday we went to the Biltmore Estate. It was raining so we couldn't look at the gardens but the home was gigantic and unbelievable. Then yesterday we went to the home of Carl Sandberg. What a difference. He lived very simply and had gorgeous views of the countryside from his home up on the hill. Tha fall colors are wonderful and Joe borrewed Barb's camera to take some pictures. We have experienced some great vegetarian meals at all-vegetarian restaurants. I think I need to take some cooking lessons. My food doesn't taste nearly as good as what I have eaten this weekend. Joe continues to do well although I am pushing food and snacks on him so he doesn't lose too much more weight too fast. We head home tomrrow but will take two days and stop and see the sights as we go. Thanks for all your prayers and comments. We feel blessed with every good day we have. God bless. Mary Anne

Update for 10-24-06

It's another beautiful day! Sunny with a crispness in the air. These days, each day is a gift. It's amazing what something like Cancer can do for your attitude about the specialness of each day. I am still feeling very well except for the occasional "quesyness" ...(I'm not sure how you spell that). The Vegan diet is going well as I have lost thirty pounds (Yes, 30 lbs.) and managed to pare me down to just overweight from the previous morbidly obese.

As you regular readers know I have decided not to do any chemo. This type of Cancer is medically incurable (boy is that hard to read in the reports about yourself). I have not known anyone who has taken chemo and continued to feel well. I feel well now and so it seems irrational of me to take chemo which will make me feel badly but will extend my life. If I am feeling rotten, why would I want me life extended anyway?

As you know, we are praying for God to heal me but no matter what happens, it will all be in His plan. Words cannot express how humbled I am from all the cards, letters and especially the large numbers of those praying for me. Some time ago I received a prayer blanket and on it was a verse from Joshua 1, 5. "Be strong and couragous. Do not be terrified. Do not be discouraged for the Lord your God will be with you wherever you go".
Thanks to all of you who read this for your care and support. I continue to feel wrapped in love and prayer!

Joe

Update for 10-17-06

Just arrived home from our trip. It was wonderful and Joe remained feeling well the whole time. We spent the last weekend in Las Vegas with our daughter Karen and had a wonderful time seeing the show "O" by Cirque de Soleil, and also the Hoover Dam. We will be home for a week and the off to see our friends the Guenthers who moved away a year ago to North Carolina. We are driving down with Carnevales and our dear friend Julie who used to be part of our sharing group from Marriage Encounter is going to meet us there from Boston. We will have lots of laughs talking about old times and just catching up. We will be gone from Oct. 26th to 31st. We have an appointment with Dr. Mulcahy when we return but are still firm in the decision not to take chemo. God Bless you all and please continue to pray. We are still looking for a miracle. Mary anne

Update for 10-12-06

We had a beautiful day yesterday at Canyonlands National Park. We took two short hikes to see the vast ranges of mesa and buttes and then stood at the Grand View and the four of us prayed together for the beauty and for healing of Joe’s cancer. It was magnificent. It is really easy to pray when you are looking at God’s creation. We came back to Moab and toured the shops a little, took a nap and went to dinner. Joe has been spending time fixing the pictures on his computer so they are the best. We have never seen country like this. We ate a picnic lunch at one of the overlooks and some beautiful Pinon Jays, which are a gorgeous blue, joined us.

We have so much to be thankful for:

• That Joe feels well enough to enjoy this trip that he has wanted to do for so long.
• That we have wonderful friends to be able to share this with,
• That we feel the grace of all the prayers each day.

We so value all the people who read this blog and care and believe that God can work with this cancer and bring good out of it.
Love to all of you and God Bless Mary Anne

Update for 10- 10 -06

Yesterday was a rainy day so we drove through Capital Reef but the scenic drive was closed as welll as all the trails. We came back to the motel and napped, had veggie subway for dinner and then played hand and foot. Score girls 1 Boys 1. The football game wasn't on in this town as well as no cell phone usuage. Glad we have the computer with us to keep in contact. It is amazing hoe different the formations are from one park to the other as well as just from one side of the road to the other. We actually drove through an area with 2 inces of snow on the road. They say this is like a 100 year rain. We hope to be able to get to Moab today but if it rained too much last night we will have to go the long way around because Hwy 24 was closed a few days ago because of the rain. We will spend 3 days in Moab and hope to have phone service. There we will see Canyonlands and the Arches. Joe has taken some wonderful pictures with Ed's camera and we hope to download them today so we can take more. Love to you all and please keep praying.
We are using the last Xango juice today but should have a shipment waiting for us in Moab. ( That is the mangostein juice but the particular brand we use is called Xango.) Bye for now. We will check in tomorrow. God Bless Mary Anne

Update for 10-9-06

We had a great day yesterday. We visited the original ruins of an Anatazi dwelling in Boulder and then went on a 6 mile hike to Calf Creek Falls. We weren't sure if we could go all the way but we did and were proud that we could. Our son Michael will also be proud becaue he did this trail a few years ago and recommended it to us. Joe led the group and was a real trooper. It was worth the hike, the falls were beautiful and we had lots of good laughs. We played name that tune with three notes on the way back. We didn't start out til 3 P.M. so were concerned with how long it would take but we did it in three hours. We were pooped when we got back and ate and went to bed at 8 (well at least I did). Joe's stomach felt good all day also so that was a God thing. We are eating mostly vegan but sometimes we just can't get it. We are using the juice plus and the barley max to substitute for the juicing. There is still no cell phone coverage. Our plans for today may be changed becaue they are expecting more rain and the road we need to take has been flooded. Please pray the Joe continues to feel well and that He will use this time to bring us closer to Him. Seeing his natural beauty, you can't help but know what a wonderful God He is and how He loves us. God Bless Mary Anne

Update with a very nice comment

Update for 10-8-06

We are totally out of cell phone range and didn't have internet either yesterday. However we are in Escalante today and will spend two days here seeing the Escalante grand staircase and state park and one other thing. If you have been watching the news Utah has had some horrific storms, very unusual for them, and flash floods. We haven't been bothered by it yet but we may find some things not accessible today due to rock slides etc. We ate at Hell's Backbone Grill last night and it was all organic food,. Delicious, not all vegan, but at least very healthy. Yesterday we saw Bryce Canyon and it was again spectacular. I can't think of another word to use to describe it. We can't find a camera store anywhere but Joe filled up Ed's camera disc and now he is deleting some to have more room For those of you who know Joe well, he takes hundreds of picture each day on a trip like this. So the one disc Ed has doesn't quite make it. He continues to feel well except for the queeziness which is back. His headache is gone. Yesterday we walked two trails and probably a total of 4 miles. We are getting our exercise and drinking lots of bottled water. Michael, our son, bought Joe some great running shoes so he is wearing those for our walks. Yesterday we saw Quail, a beefalo (not a buffalo), chipmunks, two golden eagles and jackrabbits. It is so nice to see wildlife in their own terrain. Please keep praying for health and safety. We so appreciate your support.
Take care God Bless Mary Anne

Update for 10-6-06

We arrived yesterday with no problems and although we had thunderstorms on and off we did go through Zion National Park yesterday afternoon and had dinner in the restaurant in Zion Lodge. Joe had a headache most of the day yesterday and for those of you who know him he has SAD which means rainy days are not good. On top of this his camera jammed and the lens won't come out. Taking pictures is a huge value to Joe so please pray that either we can get it fixed in this tiny town today or he will be happy with borrowing Ed's camera. Even in the rain, the cliffs are spectacular and we got in a 2 mile walk between the storms along the Virgin River that runs all through the park. Our pastors daughter, Debby, sang a song at church recently and I can't get the words out of my head it said "light your candle, run to the darkness" I think for me this means for Joe to feed his body healthy food that God originally intended us to eat and it will run to the cancer and it will be dark no more. All night I kept waking up to the words of this song so I must need these words today. Thanks to all who are praying and caring. We are back to Zion this morning and then on to Brice this afternoon. God Bless Mary Anne

Update for 10-3-06

We are getting very excited. We leave for Utah in 2 days and are trying to pack for cool weather in Utah and warm weather in Las Vegas. I want to bring the computer so we can blog along the way (where did that word come from?). We hope we will have room. Joe continues to feel well and we are taking the Xango juice with us and will have a case drop shipped to one of the hotels so Joe can stay on it. We hope to stay as legal as possible to the nutrition program and Joe is such a trooper. I am trying new recipes every day and some are not as successful as others. Yesterday I made a cold raw soup with zuccinni as the main ingredient as well as other vegetables. I could tell when Joe took the first taste it wasn't good. I had him make himself a almond butter and fruit spread sandwich and I continued to eat the soup. This program agrees with my system so well, my irritable bowel is gone! However I know I liked veggies better than Joe to start with. Another thing I realized yesterday is I won't have to cook or prepare raw for two weeks. I can't remember the last time I didn't cook for two weeks. Maybe NEVER. Each day is a blessing and we are trying not to waste them. We pray every day that this cancer will be used for God's glory in some way. As an aside, I started coaching a swim team here at Carillon in June rather than train for Triathlons. What a Godsend decision that was. Our club has competed several times and I love seeing them enjoy swimming as I do. They gave me a gift certificate yesterday for a manicure, pedicure and massage. They will make sure I take care of myself in case I don't. They are also taking over while I am gone so they don't lose two weeks of practice.
Joe is supposed to play his last golf game of the season today but with all the rain last night he may be swimming on the golf course. Love to you all and God Bless. I will do my best to get the computer in. It goes with my favorite scripture - Phil 4-13 I can do all things through Christ who give me strength. That fits in so many situations. Mary anne

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!!!