We had a great time in the Tetons, Yellowstone, and Jackson, Wyoming last week. There were four of us: Emily, Katie, Bryan and me. We hiked a couple of days, took a raft 10 miles down the Snake River, rode to the top of one of the mountains on a tram, took in a cowboy dinner/show, saw the geysers and the falls in Yellowstone and lots of wildlife everywhere. We stayed in a cabin in the Tetons, which was roomy and a good quiet option - no TV, phone, internet for a week. I had a great time, but it wore me out! I am just recovering in time to go to the beach with my mom, sisters, and the cousins tomorrow. Hopefully I will rest more there.
I am struggling alot with truncal swelling. I have stretched the fascia, but the swelling still goes to the point where it is painful. It is frustrating and I am trying to find ways to cope with it, but I have had a difficult week with it this week. I think part of my frustration is fatique from the last trip. I plan to continue my exercises at the beach and my water therapy to try to get it under control. I struggle with hope as there seems to be no end to the lymphedema and the fatique and pain it causes.
Jan
Friday, June 5, 2009
Sunday, May 17, 2009
My Niece, My Dad, My Daughter, Me
Little Kennedie Grace had surgery yesterday morning in Cincinnati again. The tumor had grown back by 50%. They are inserting a tube for a few days to try again to block regrowth. Kennedie will be in ICU for a few days. Please pray for Jessica and Jarrod, her parents, and for my sister, Becky, and brother-in-law Wendell, the grandparents. Jessica and Jarrod were told that this could be a pattern until Kennedie reaches nine months. She is five months old now. Prayers for total healing and no regrowth would be appreciated, although we know that everything is in God's hands.
My dad got baptized today, just a few days shy of his 75th birthday. He was baptized years ago, but he has been studying Scripture very diligently since his cancer, and he felt that he needed to do it again. I am so happy for him and Mom.
Sarah called from Williamsburg this weekend. She and Paul are there for Paul's sister's (Laura)graduation from college. Sarah and Paul have turned it into a mini-vacation, touring Colonial Williamsburg, Yorktown, Newport News, seeing museums, hoping for a beach day tomorrow. Paul found a really interesting historical B&B, which Sarah has loved. He is very good at researching and finding interesting places to travel.
Finally, about me. I have been off my narcotic pain med for 2 1/2 weeks, and it has been harder than I would have ever thought. I still have fatigue and depression, and of course, I have pain that I was not aware of on meds. Please pray that I will be able to keep up with my family next week as we go on vacation. We are going to the Tetons, Yellowstone, Jackson Hole, and I want to be able to have the energy and positive mindset to enjoy this special time with my family. It will be Emily's last family vacation with us before she marries, so it is especially important that I do well.
Thanks for continuing to check this blog and share in the lives of my family. Thanks for your many prayers on our behalf. We never had any illness in our family until my diagnosis, and now it seems to be a part of our lives for the moment. Thanks for lifting us up!
Jan
My dad got baptized today, just a few days shy of his 75th birthday. He was baptized years ago, but he has been studying Scripture very diligently since his cancer, and he felt that he needed to do it again. I am so happy for him and Mom.
Sarah called from Williamsburg this weekend. She and Paul are there for Paul's sister's (Laura)graduation from college. Sarah and Paul have turned it into a mini-vacation, touring Colonial Williamsburg, Yorktown, Newport News, seeing museums, hoping for a beach day tomorrow. Paul found a really interesting historical B&B, which Sarah has loved. He is very good at researching and finding interesting places to travel.
Finally, about me. I have been off my narcotic pain med for 2 1/2 weeks, and it has been harder than I would have ever thought. I still have fatigue and depression, and of course, I have pain that I was not aware of on meds. Please pray that I will be able to keep up with my family next week as we go on vacation. We are going to the Tetons, Yellowstone, Jackson Hole, and I want to be able to have the energy and positive mindset to enjoy this special time with my family. It will be Emily's last family vacation with us before she marries, so it is especially important that I do well.
Thanks for continuing to check this blog and share in the lives of my family. Thanks for your many prayers on our behalf. We never had any illness in our family until my diagnosis, and now it seems to be a part of our lives for the moment. Thanks for lifting us up!
Jan
Friday, May 15, 2009
Emily is Engaged!
Hunter took us to lunch last week to ask for Emily's hand and to show us the ring, which is beautiful and just what Emily wanted.
Emily and her three roommates left Tuesday on a road trip to Estes Park in the Rockies to celebrate their graduation from UL. Hunter flew out there and surprised her. Her roommates took her hiking on a trail, and he met them along the path. He took Emily to a field where he had a picnic and roses waiting. He read I Cor. 13 to her, then got down on one knee and proposed. They knelt together and prayed, and then the roommates rejoined them. They had been videoing from a higher spot. Emily and Hunter called last night to let us know. I am excited about getting another good son-in-law! No date has been set, but they have been talking about May 2010.
Jan
Emily and her three roommates left Tuesday on a road trip to Estes Park in the Rockies to celebrate their graduation from UL. Hunter flew out there and surprised her. Her roommates took her hiking on a trail, and he met them along the path. He took Emily to a field where he had a picnic and roses waiting. He read I Cor. 13 to her, then got down on one knee and proposed. They knelt together and prayed, and then the roommates rejoined them. They had been videoing from a higher spot. Emily and Hunter called last night to let us know. I am excited about getting another good son-in-law! No date has been set, but they have been talking about May 2010.
Jan
Tuesday, May 12, 2009
Graduation/Mother's Day
We attended several events for Emily last week. She graduated magna cum laude Saturday with a history major and a religious studies minor. She and her roommates left today for a trip to Estes Park in CO for almost two weeks.
We celebrated Mother's Day by having Jean spend the night with us after graduation. Sunday she went to her church. Bryan, Katie and I went to Sojourn, Paul and Sarah's church, along with Paul's parents. Afterwards, we had a cookout at my sister Jennifer's house. We usually do the field, but Jen and Van have an inground pool at their new home and the younger cousins wanted to swim.
I am starting to come out of the depression and fatique that is a result of withdrawal from narcotics. I am two weeks out. It takes 30 days for the full effect of the med to be out of one's system. My LE is giving me fits right now, but I am fighting back by doing my home program and going to the pool when I am able. I don't swim, just float to get the compression for my trunk.
Katie is home and I am enjoying her company. She did very well her first year at Anderson, and is already looking forward to getting back to school.
Jan
We celebrated Mother's Day by having Jean spend the night with us after graduation. Sunday she went to her church. Bryan, Katie and I went to Sojourn, Paul and Sarah's church, along with Paul's parents. Afterwards, we had a cookout at my sister Jennifer's house. We usually do the field, but Jen and Van have an inground pool at their new home and the younger cousins wanted to swim.
I am starting to come out of the depression and fatique that is a result of withdrawal from narcotics. I am two weeks out. It takes 30 days for the full effect of the med to be out of one's system. My LE is giving me fits right now, but I am fighting back by doing my home program and going to the pool when I am able. I don't swim, just float to get the compression for my trunk.
Katie is home and I am enjoying her company. She did very well her first year at Anderson, and is already looking forward to getting back to school.
Jan
Monday, April 27, 2009
Updates on a variety of topics
I am feeling much better since returning home from PA. I do a home program which takes an hour a day, but it really helps with the pain. I am extremely fatigued, which they told me would happen, and I am weaning off narcotics, which is a bear! But I think I am making progress.
We adopted a 3-year-old mini-schnauzer named Lucy from a family leaving the country for mission work, and she is a doll. She and Tatiana seem to get along well. She has a black body, with a silver face and legs.
My little great-niece, Kennedie, has been having a lot of trouble with her trachea and with her breathing over a period of at least a month. She is now at Cincinnati Children's Hospital being treated for a benign tumor on her trachea that was cutting off most of her breathing! They have lasered the tumor and are using other methods to completely destroy it. Jessica and Jarrod will probably be there with her through next weekend. She is such a tiny sweetheart, and we can't wait to see her enjoy her little life without struggling for air.
Katie ran the Mini-Marathon with Bryan Saturday. She completed the 13 miles and is ready for her next challenge! Sarah, Becky, Mom and I had fun cheering them on.
Finally, for those of you who have followed Emily's boyfriend, Hunter Cantwell, you know that he was not drafted yesterday. Bryan and I turned off the TV and quietly tried to eat some dinner. Emily called within minutes to tell us that he had signed as a priority free agent with the Carolina Panthers. He will fly there on Thursday. I am happy that he gets to continue to play football, and who knows, maybe there will be an engagement soon?
Sorry I have not written for awhile. My fatigue gets the best of me much of the time.
Thanks for prayers,
Jan
We adopted a 3-year-old mini-schnauzer named Lucy from a family leaving the country for mission work, and she is a doll. She and Tatiana seem to get along well. She has a black body, with a silver face and legs.
My little great-niece, Kennedie, has been having a lot of trouble with her trachea and with her breathing over a period of at least a month. She is now at Cincinnati Children's Hospital being treated for a benign tumor on her trachea that was cutting off most of her breathing! They have lasered the tumor and are using other methods to completely destroy it. Jessica and Jarrod will probably be there with her through next weekend. She is such a tiny sweetheart, and we can't wait to see her enjoy her little life without struggling for air.
Katie ran the Mini-Marathon with Bryan Saturday. She completed the 13 miles and is ready for her next challenge! Sarah, Becky, Mom and I had fun cheering them on.
Finally, for those of you who have followed Emily's boyfriend, Hunter Cantwell, you know that he was not drafted yesterday. Bryan and I turned off the TV and quietly tried to eat some dinner. Emily called within minutes to tell us that he had signed as a priority free agent with the Carolina Panthers. He will fly there on Thursday. I am happy that he gets to continue to play football, and who knows, maybe there will be an engagement soon?
Sorry I have not written for awhile. My fatigue gets the best of me much of the time.
Thanks for prayers,
Jan
Wednesday, April 8, 2009
Update from PA
I finished treatment early today, so I have a little time to write.
I am seeing big improvements in my level of pain, and the therapists tell me that it will take a month or so for my body to integrate the changes that have been made, so I should continue to see improvements after I am home. I am not pain-free, but my pain is lessened so that I can breathe deeply without chest pain, and I am not pushing through pain to do daily activities. I have also been able to go to the treatment center without wearing my truncal compression, although I will continue to wear it to clean house or if I am doing much standing or walking.
The treatments sometimes feel good; at other times they are painful. The work on loosening the facsia in the area of my chest is painful, but it yields good results so I am glad to endure the pain.
I felt good enough this weekend to drive to Lancaster on Saturday and see the Amish farms; on Sunday I went to see Valley Forge. I did not spend a long time out; I usually left my "home" around noon and returned by six after eating some dinner. But the ability to drive and do those things is good for me.
The therapists tell me that I will need to rest and take it easy for the next month, focusing on my home program and listening to my body, stopping before I get tired.
There is also a component of this program that deals with the mind: practicing forgiveness, letting go of personal failures, relaxing and dealing with relieving stress, etc., all of which can contribute to illness and tightness of the facsia.
In addition, there is a focus on thinking positively about oneself and visualizing having successes; for example, I would picture myself doing some of the things I want to do again and I would be smiling, looking happy while I engaged in those activities. I have been encouraged to journal about the things we talk about during the day, which I am doing, and I am finding that my attitude towards my future does make a difference.
Thanks so much for your prayers and support for me during my time here. I appreciate it very much!
Love,
Jan
I am seeing big improvements in my level of pain, and the therapists tell me that it will take a month or so for my body to integrate the changes that have been made, so I should continue to see improvements after I am home. I am not pain-free, but my pain is lessened so that I can breathe deeply without chest pain, and I am not pushing through pain to do daily activities. I have also been able to go to the treatment center without wearing my truncal compression, although I will continue to wear it to clean house or if I am doing much standing or walking.
The treatments sometimes feel good; at other times they are painful. The work on loosening the facsia in the area of my chest is painful, but it yields good results so I am glad to endure the pain.
I felt good enough this weekend to drive to Lancaster on Saturday and see the Amish farms; on Sunday I went to see Valley Forge. I did not spend a long time out; I usually left my "home" around noon and returned by six after eating some dinner. But the ability to drive and do those things is good for me.
The therapists tell me that I will need to rest and take it easy for the next month, focusing on my home program and listening to my body, stopping before I get tired.
There is also a component of this program that deals with the mind: practicing forgiveness, letting go of personal failures, relaxing and dealing with relieving stress, etc., all of which can contribute to illness and tightness of the facsia.
In addition, there is a focus on thinking positively about oneself and visualizing having successes; for example, I would picture myself doing some of the things I want to do again and I would be smiling, looking happy while I engaged in those activities. I have been encouraged to journal about the things we talk about during the day, which I am doing, and I am finding that my attitude towards my future does make a difference.
Thanks so much for your prayers and support for me during my time here. I appreciate it very much!
Love,
Jan
Friday, April 3, 2009
Greetings from Pennsylvania!
I finished my first week of therapy today, and I am glad to have a couple of days off. I feel great while they are treating me, but soreness kicks in a few hours later and I am worthless for the rest of the evening.
I have noticed big changes and I am very hopeful for pain relief and flexibility.
They are teaching me a home program that I will need to follow daily. I will spend 45 to 60 minutes each day doing this program for continued progress.
I may not be 100% at the end of next week, but I am pleased so far with my progress, and expect great gains next week, too.
I am also learning alot about self-talk and attitudes that can affect our healing. Without realizing it, I had become fairly negative about my healing process and out of touch with my body, tuning out things that I need to be aware of to continue to treat myself at home.
Thanks so much for your prayers and support! I brought the cards that people sent to me the weeks before my trip, and they are on my bulletin board here, so I feel like you are with me.
God Bless,
Jan
I have noticed big changes and I am very hopeful for pain relief and flexibility.
They are teaching me a home program that I will need to follow daily. I will spend 45 to 60 minutes each day doing this program for continued progress.
I may not be 100% at the end of next week, but I am pleased so far with my progress, and expect great gains next week, too.
I am also learning alot about self-talk and attitudes that can affect our healing. Without realizing it, I had become fairly negative about my healing process and out of touch with my body, tuning out things that I need to be aware of to continue to treat myself at home.
Thanks so much for your prayers and support! I brought the cards that people sent to me the weeks before my trip, and they are on my bulletin board here, so I feel like you are with me.
God Bless,
Jan
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