Update for 11-29-06

Well, Joe has been busy going to the doctor with me the last two days. I need to have my thyoid removed due to Herthle cells in a nodule and there are multiple nodules. They say it is very fixable whether it is malignant or not so I will have the surgery the 19th of December, as soon as we return from Palm Desert. (We are going there for two weeks beginning the 4th of December.) Dr. Schubert, our internist, was happy to see Joe yesterday and see that he was doing well. He had a minor pain (it is always minor when it isn't yours), on the weekend near his sternum but it left on Monday. Sometimes he will be nauseated after a meal but it leaves in several hours. I am trying to get him to look at it as a bunch of tumor or toxins breaking off and getting out of his system. We have modified our diet to truly vegan but not truly raw. We're having more cooked foods but all organic and vegan. Found a great sloppy joe recipe that is all soy. You can't tell the difference. Panera Bread is a great place for us to eat with salads and vegetarian soups.
Joe's TV bulb burned out and will be fixed tomorrow, but I have graciously allowed him to watch mine in the bedroom the last two days. I, of course, don't tape the same shows he likes but any TV is better than no TV. Since I have given this nasty cold to our neighbors Ed and Jayne and Pastor Earl and his wife Pat are afraid of getting it, we haven't played hand and foot for weeks. We are having withdrawal. Hopefully we will get some cards in tonight.
It looks so nice coming down our street seeing all the Christmas lights. I love this time of year with the music and the hustle and bustle. Hope you all get your shopping done early and can enjoy the Christmas season. I opted out of most of the shopping and gave the kids checks to do a Christmas memory with their family or whatever they wanted. Since 7 of the 11 of our family that will be in for Christmas are now doing vegetarian ,we probably won't have our traditional beef tenderloin on Christmas Eve. We will have to talk about options. I have really rambled but wanted to keep in touch. Thank you for your prayers and we thank you for all being there for us. God Bless Mary Anne

Update for 11-26-06

Well, Thanksgiving is over and we can rest up a little and I think that we need it. It was a few days of on-the-go all the time. All the family was in and it was just super. Dinner was at Kevin and Tracy's and she did a great job. The meal was great and we have so much to thankful for.

On Saturday, the "ladies" had their annual mother/daughter lunch and while thay were doing that, all the "men" went and shot sporting clays. All the little boys got to shoot also (of course with dad's help). It was a fun activity and then we came back home and napped. Priceless!

Today the out of towners all headed home. A bit sad but so happy that we had that time to spend together.

Joe

Update for 11-21-06

Thanksgiving will be fast upon us and as Mary Anne said, all the children will be in town. There are 17 of us and it is so great when we all get together. The "boys" have decided that when the "girls" are having the mother/daughter lunch on Saturday, we are going to go to a sporting clays course and do a little shooting. A little different than trap or skeet as it will represent more hunting-type shots of all kinds

Tomorrow is going to be in the 60's and I will put up the Christmas lights....a chore I hate doing but love the results! It would seem that each year I test all the lights and then string them all around only to discover after they are all up that a number of them no longer work...*#&##**#@. They are traditionally turned on at the Coburn's on Thanksgiving evening (at least those that still work will be turned on).

I have so much to be thankful for. God has been so good to me and our family. He has cared for us through all the highs and the lows. I do not see this time as a low as I am feeling very close to God and as I have said before, I know all this is in His plan. Among the many things for which I am thankful are all of you who read this and pull for me and pray for me. Knowing that I have so many praying for me is such a great comfort and blessing. May each of you, regardless of your current situation, realize how blessed you are and thank God for all the blessings you have received. Have a wonderful Thanksgiving!

Joe

Update for 11-20-06

I still have no voice, but I started on an antibiotic today so hopefully I will be able to talk when everyone comes in for Thanksgiving. Heard of a neat idea on WMBI midday connection of something to do with old pictures you never got around to putting in albums. Don't we all have those? They suggested making a photo montage and pasting them together. So that is our family project for Friday daytime. Our whole family will be in for Thanksgiving so there will be 17 of us at Kevin and Tracy's house on Thursday. Friday we will do the picture pasting during the day and Friday night we have a huge pizza party with our extended family at my niece Carrie's house. I can't guess how many will be there but probably over 60. Saturday we have our traditional Mother-daughter lunch with all the women and girls over 7. The boys are on their own and their plans are not set yet. Saturday night will find the 17 of us back at Kev's for the evening and then everyone heads home on Sunday. Michael , Heidi and kids will be driving from Ohio and Karen will be flying in from Az. We don't get everyone together that easy so this will be a special time with lots of laughs. Joe continues to do well. Today was a hard day saying goodbye to Rick Mlady and hoping we won't be in that situation for a long time. We know God still has a lot for us to do. Have a wonderful Thanksgiving everyone and thanks so much for the prayer support. We love you all and remember all you who are praying for us. Mary Anne

Update for 11-18-06

Since I have no voice due to a bad cold and can't talk to anyone I thought I would write in the blog and tell you all about Wellness House. We went for a self hypnosis class this morning for two hours. There were about 22 of us there and we went around the room and talked about why we were there and what kind of cancer and how long etc. We also talke about what we did when we were down. The facilitator was excellent. He has run a medically based hynosis program for 16 years at U of I Chicago. Then we put on earphones and he led us through. When we took off the earphones he told us we had been doing it for 25 minutes but it felt like 10. It was very relaxing. He leads these sessions for Wellness House once a month. He also gave us a CD to use at home. Several of the people came up afterwards to talk. I, of course, just stood there smiling. All I have is a whisper. It was very supporting to see almost all these people who are vegetarian or vegan since their diagnosis. They really see the value of getting rid of sugar, meat, salt and dairy. One of the guys said QiGong was a great class. Wellness House is closed over Thanksgiving, but Joe said he would give that class a try. It was a great group of people and I sure see the value of sharing your stories. There were 4 other caregivers there.
Yesterday Joe had is pulmonary function test and he didn't pass with flying colors but he did OK. The Dr. put him on an inhaler for 4 weeks and he will be retested then. The doctor said if he passed it with using the inhaler he would OK him to dive but he had to use the inhaler til we got back from Bonaire. That would be fine with him. We are having dinner with Ed and Jayne our neighbors who went to Utah with us and she is fixing something she learned to make in Italy where she went with her sister a few weeks ago. She was a great cook before. I can't wait to see what she'll prepare vegan. We stopped at Wild Oats grocery store after the trip to Wellness House this morning and found some new products that were vegan. We had homemade (well, fresh-made) vegan lentil soup for lunch. Joe has watched football all afternoon and I have been in the bedroom watching TV and sleeping. I'm not much company with my whispering and Joo being hearing-impaired somewhat. I am really the silent partner this weekend.
Our small group was studying the last part of the Our Father with the subject of "deliver us from evil" or the evil one. It was interesting to hear Max Lucado say that God controls what he allows the devil to do and he does it for three reasons: To refine us, to awaken the sleeping, and to strengthen the church. He said that each time the Satan tempts us and we turn to God instead, it is like scoring a basket at the wrong end of the court from your team. Satan loses. Joe feels like God is using this cancer to refine him and it definitely has brought him closer to God. Joe is trying to make each day count. We feel so much more connected to God and each other. We are closer than we have been. Times of trial always have something good in them. Our friend Rick Mlady passed away this week. He was diagnosed with stage 4 lung cancer about 10 days before Joe found out about his. Joe will be a pall bearer on Monday so please remember the Mlady family in your prayers as they grieve for a wonderful husband and father. God bless you all and keep on praying. It was wonderful to see the strength of the faith of the people at the meeting this morning. I don't think there was one who didn't mention prayer as a sustaining force in their lives. By the way, the Doctor is a Dr. of ministry with a practice of hynosis for the medically ill. Bye for now. Mary Anne

Update for 11-14-06

Tonight, Mary Anne and I went for a tour of the Wellness House in Hinsdale. They have lots of courses on stress management, support groups for folks with Cancer and for the care-givers. Nutrition classes, yoga and much, much more. Very impressive! All of this is without cost as the entire Wellness House is supported by grants. I am sure there are stresses in my body now and those stresses do inhibit the immune system so maybe the yoga can help in that area. Our children believe that I have been dealing with stress for so long that I don't even realize that I have it.......could be! We will probably try some of the classes. I think we signed up this Saturday for a class on self hypnosis. I let you know.

Joe

Update for 11-9-06

Things are pretty relaxed here right now. We are just kind of kicking back after the trips to Utah and North Carolina. Yesterday and today are beautiful here with temps in the high 60's low 70's. I played golf yesterday and except for my back which always bothers me a bit when I golf, it was all great! We will be heading for Palm Desert on December 4th and will return on December 17. All the children will be in town for Thanksgiving and that is always a wonderful time.

I have had a large number of responses to my decision not to have chemo and all have been supportive regarding that decision. We are still doing the vegetables, fruit, nuts, seeds and grains diet (Oops! life style change). It's OK but I still get a great yearning for "real" food. I feel fine on this regimine and as a side benefit have lost 30 lbs. I am not drinking a bottle a day of Mangosteen any longer. I think I did that for about four weeks. I do drink a glass each day now along with Barley Max and Carrot Max and some carrot juice.
Thanks again for all your support and prayers.

Joe

Update for 11-1-06

Mary Anne and I went to see the Oncologist, Mary Mulcahy, at Northwestern in downtown Chicago this morning. It's always so much fun to drive to the loop...almost 2 hours of stop and go on the expressway....hmmmm, a misnomer there. Regardless, we had an excellent visit with her and I explained that I was not going to take any chemo or other treatment at this time. She agreed and said that the decision was "well thought out, intelligent and courageous". It was very affirming to have her say that. She said that if some treatment would be able to give me a chance at a cure then she would be pushing for it but under the circumstances any treatment was only palliative and inasmuch as I was feeling well there was not much sense in doing it. I left with an even increased sense that I have made the right decision.
The next trip will be to Palm Desert for two weeks the first part of December. Our love and thanks to all out there who follow the blog and support and pray for me. I am so humbled, bouyed and thankful for your prayer and encouragement.

Joe

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