Honestly, I really wasn't ready for the old week to end! Mark has had a great several days. He woke up Saturday morning like a new person. It was fabulous. I prayed it would last through work on Saturday until he got home. I went to the shop as well, and later we made Walmart and ended up at the grocery store at 9:00. A friend at the store said, "What are you both doing here so late?" We laughed and said we don't have any kids." He said, "and you come to the grocery store on Saturday night with no kids?" True, most people would probably opt for a night on the town, but we kept it pretty simple. Didn't want to ruin Mark's great day. So good in fact that we actually planned a trip to the lake with friends on Sunday - and followed through with it! WOOHOOOOO. We were there all day. We had perfect shade for Mark and his own personal mister. Good friends and good times and he even skied. I am only sad that the kids didn't get to enjoy it with us. Instead, they were having a great time of their own in Oklahoma City with my parents. Museums, river rides, the zoo, the memorial, bowling, swimming, etc.. I even hear there was a little bit of exercising. Life will seem boring ,I am sure, when they return!
You may have noticed that there was no post for a while. There actually is a legitimate reason for this. I have had no home computer. If anyone has a remedy for getting my windows to load, it would be greatly appreciated!!!! The computer comes on and starts to boot, but stalls when trying to load windows. I have started in the safe mode and have tried to restore to the last working time, but haven't had luck. Guess I will probably be forced to take a deep breath and take it to let someone else fix it. Aarrggghhh. Computers, love em and hate em. At any rate, the ipod is not my preference for posting.
This week brings chemo #4. To Dallas on Wednesday for that. So we'll make the most of Monday and Tuesday. Love to all, Missy
Monday, July 26, 2010
Monday, July 19, 2010
My Dear Nelda, This one is for you.
Every time I see a comment from you I think to myself, "she is amazing". I am blown away by your support and your kind words and your tender heart. I wish I could respond every time. You remind me more of the energizer bunny than anyone I know. Even through your own trials, you somehow find the time and energy to keep up with us. It is truly a gift to us and we both hope you know how uplifting and encouraging it is. I just couldn't help but respond today to your comment on Mrs. Schreiber. You know we say all of the time what good medicine young children are. Their laughter, smile and genuineness can melt and mend even the hardest of hearts. I whole-heartily believe the same of the elderly. You have no idea what a joy it brings to me to get to spend time with my grandparents. Their smile, their joy to see you, their genuine concern for how you are doing today, and their pride in just having family to visit. I just joined grandpa for his check-up today, which he came to from his hour of swimming, which he will leave to catch some dominoes and lunch on his way north across the river- all at the young age of 96!!!!! Life is grand!!! Aging is a difficult process. To see my grandparents, Mrs. Schreiber, and many in Mark's family doing so with such vigor should be a challenge and inspiration to all of us young and old. Live life to the fullest and when you get old, just do it some more.
Give Mrs. Schreiber my best. Hope she is feeling well these days (it sounds like it!). And pardon my aging, (feeble mind) but what story might you be talking about?
All my love, Missy
Give Mrs. Schreiber my best. Hope she is feeling well these days (it sounds like it!). And pardon my aging, (feeble mind) but what story might you be talking about?
All my love, Missy
Saturday, July 17, 2010
Chemo #3 complete.
Good morning all. Hope this wonderful weekend finds everyone doing something they absolutely enjoy!!! This week Wednesday was Mark's chemo day. We visited with Dr. McCollum first. Everything is going as expected with Mark symptom wise and all of his labs and "condition" remain about the same. It is still a matter of just getting the right combination of medications to treat side effects.
Woohoo!!!!!!. Thanks to a j-pouch forum on the internet we have found a "miracle" cream. Finally he has some relief from at least one effect of chemo - well at least for 24 hours he has. We sure hope it continues. God bless all those people smart enough to put together great websites for the good of others. Really some valuable information on there. Besides the medicine, one thing I have found most valuable is confirmation that there is no black and white. There is no "answer" it is all just trial and error to see what works with each individual. I guess for now, we are all really just guinea pigs in this deal.
So nausea started on the trip home from Dallas which seemed a little earlier than before. He is still very tired and has a hit and miss appetite as well as hit and miss "good nights". All of that is about the same.
We got some new information from the doctor. We are going to do a scan following Chemo #4 which is on July 28th. He said that following 4 treatments is usually when you will begin to see progress if there is going to be any. After 6 treatments, if there was no progress, he would be assured that there was not going to be any with this medicine. He felt comfortable looking after 4 so that we can change if necessary. Remember progress would be shrinkage of tumors or at the very least, no growth of existing tumors. Any growth or any new spots would NOT be progress. Soooooo, come the first of August we better dust off the old knee pads and kick it in to overdrive praying for God's healing grace. I know he will provide for all our needs.
Just heard in passing today of a 2 year old girl with stage four cancer. Can't even imagine. Why is it that when you think you have it bad, there are constant reminders of how bad things can be. Isn't God awesome?
Woohoo!!!!!!. Thanks to a j-pouch forum on the internet we have found a "miracle" cream. Finally he has some relief from at least one effect of chemo - well at least for 24 hours he has. We sure hope it continues. God bless all those people smart enough to put together great websites for the good of others. Really some valuable information on there. Besides the medicine, one thing I have found most valuable is confirmation that there is no black and white. There is no "answer" it is all just trial and error to see what works with each individual. I guess for now, we are all really just guinea pigs in this deal.
So nausea started on the trip home from Dallas which seemed a little earlier than before. He is still very tired and has a hit and miss appetite as well as hit and miss "good nights". All of that is about the same.
We got some new information from the doctor. We are going to do a scan following Chemo #4 which is on July 28th. He said that following 4 treatments is usually when you will begin to see progress if there is going to be any. After 6 treatments, if there was no progress, he would be assured that there was not going to be any with this medicine. He felt comfortable looking after 4 so that we can change if necessary. Remember progress would be shrinkage of tumors or at the very least, no growth of existing tumors. Any growth or any new spots would NOT be progress. Soooooo, come the first of August we better dust off the old knee pads and kick it in to overdrive praying for God's healing grace. I know he will provide for all our needs.
Just heard in passing today of a 2 year old girl with stage four cancer. Can't even imagine. Why is it that when you think you have it bad, there are constant reminders of how bad things can be. Isn't God awesome?
Monday, July 12, 2010
A better day.
Gosh it is really cool to see you guys talking on here. LOOOVVVE IIITTT!!! Today is a pretty good day. Guess many prayers are working to give us better days. Sometimes even better hours are very welcome. I see I must have struck a note with my last post as it elicited a lot of comments. And all of them much appreciated. It's huge just knowing you are right beside us.
I harp on my children frequently, "If you don't have anything good to say, just don't speak." This would explain the scarceness of my texts. "Good" has been a little limited these days. It comes when we least expect it and we just never know what each day will bring. Sparing all the gory details, I'll try to summarize in a few words. COW POOP!!! Yesirreeeee. That about says it. Mark stays very tired for most of the 2 weeks following his treatment. The last couple of days have been better in that respect. His appetite isn't the greatest, but mostly because he is searching for answers to all of his bowel difficulties. While he is very tired,and sleeps a great deal, he has trouble sleeping at night. He gets his best sleep between 4 and 9 am on the recliner. He has to get up frequently and just has trouble getting comfortable. We have an arsenal of meds to help, but haven't found the magic potion yet. He has a product en route that he says is going to be "it".
Struggling with the side effects can definitely add stress. There is much frustration with just feeling absolutely out of control. While we wish we had all the answers, solutions, magic medicines - we don't. Only one person does. But the fact remains that we are human. We do experience sadness, frustration, anger, pain, hurt and all of the multitude of feelings that come along with being in this situation. Thank God we are NORMAL. And while we are experiencing that, it is not really our desire to make that our focus, nor a topic of the blog. If we were to dwell on that, we would find it hard to keep going each day. You may all rest assured in knowing that we continue to be strong, to be faithful, to be happy and to be BUSY!!!!! So there is no room for anything to get us down for any length of time. Our roller coaster seems infinite at this point, with twists and turns coming day by day and sometimes hour by hour. And it's also like those roller coasters at Disneyworld. You ride IN THE DARK and you don't know what is going to come next. So, if we are quiet, just continue to pray, cuz we are just holding our breath and holding on!!!!
Oh yeah, I forgot to throw in the GOOD. I did say it was scarce - not absent. No mouth sores this time. YEAH!!! And, one night in the last week he slept for 6 hours straight without getting up. WOOHOOOO!!! He sat straight up in bed and I thought something bad had happened. He said, "No, do you see what time it is? I haven't been up in six hours." Aaaahhhhhhh, we are thankful for the little things.
And there is always you, our friends, our family. There is nothing but good in having all of you who care so much to take the time to pray and keep up with our lives. We love you all, Missy
I harp on my children frequently, "If you don't have anything good to say, just don't speak." This would explain the scarceness of my texts. "Good" has been a little limited these days. It comes when we least expect it and we just never know what each day will bring. Sparing all the gory details, I'll try to summarize in a few words. COW POOP!!! Yesirreeeee. That about says it. Mark stays very tired for most of the 2 weeks following his treatment. The last couple of days have been better in that respect. His appetite isn't the greatest, but mostly because he is searching for answers to all of his bowel difficulties. While he is very tired,and sleeps a great deal, he has trouble sleeping at night. He gets his best sleep between 4 and 9 am on the recliner. He has to get up frequently and just has trouble getting comfortable. We have an arsenal of meds to help, but haven't found the magic potion yet. He has a product en route that he says is going to be "it".
Struggling with the side effects can definitely add stress. There is much frustration with just feeling absolutely out of control. While we wish we had all the answers, solutions, magic medicines - we don't. Only one person does. But the fact remains that we are human. We do experience sadness, frustration, anger, pain, hurt and all of the multitude of feelings that come along with being in this situation. Thank God we are NORMAL. And while we are experiencing that, it is not really our desire to make that our focus, nor a topic of the blog. If we were to dwell on that, we would find it hard to keep going each day. You may all rest assured in knowing that we continue to be strong, to be faithful, to be happy and to be BUSY!!!!! So there is no room for anything to get us down for any length of time. Our roller coaster seems infinite at this point, with twists and turns coming day by day and sometimes hour by hour. And it's also like those roller coasters at Disneyworld. You ride IN THE DARK and you don't know what is going to come next. So, if we are quiet, just continue to pray, cuz we are just holding our breath and holding on!!!!
Oh yeah, I forgot to throw in the GOOD. I did say it was scarce - not absent. No mouth sores this time. YEAH!!! And, one night in the last week he slept for 6 hours straight without getting up. WOOHOOOO!!! He sat straight up in bed and I thought something bad had happened. He said, "No, do you see what time it is? I haven't been up in six hours." Aaaahhhhhhh, we are thankful for the little things.
And there is always you, our friends, our family. There is nothing but good in having all of you who care so much to take the time to pray and keep up with our lives. We love you all, Missy
Thursday, July 8, 2010
Monday, July 5, 2010
Latest on Mark
Gosh, we just returned from from a long weekend at Lake Whitney with the Berend Family Reunion, and I realized I hadn't updated since we started treatment #2. It started last Wednesday. On, Friday we removed his pump and headed to the lake. Thanks to all who made it possible for us to go and helped out so that Mark could just relax. The trip was challenging for him, mostly because he wanted to enjoy all that was going on, but didn't have a great deal of energy to do so. Fortunately, he was able to get lots of rest in the air conditioning and also to get out for meals and an occasional game of dominoes. As with last time he is very tired. We discussed this with the doctor last week and he said if it became to great a problem he could give him some steroids. He said it would help to give him more energy, but would result in a cratering effect when he took him off of it. Mark prefers to avoid any steroids if possible. He also filled all of Mark's prescriptions for his mouth sores (which he doesn't have so far this time - PLEASSE knock on wood), and for the increased nausea he has had. He looks really good and as usual, if you didn't know what was happening, you could never tell it on him.
We are hoping for a good second week prior to treatment #3. Thanks for all your prayers and support. Missy
We are hoping for a good second week prior to treatment #3. Thanks for all your prayers and support. Missy
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