Nan resting, procedure now scheduled for tomorrow
Dear Family and Friends,
Its 8:50, nan has been sleeping since we got home at 6:30. The day did not go as we thought it would. First we called the doctor as instructed at 7:30 but he was on the road, please call back at 8:15, did and he said he had not been able to reach Dr. Gollupdi who would be the one to do the procedure. He said their office would call back with an appointment at 10:30. 10:50 no call back. I called and found they planned to see her on Thursday, I told the office lady we could not wait like that so they added her to the schedule and we went in for a 5:15 appointment. Nice doctor, asked the right questions and ended up saying he would call us from the hospital in the morning, Wednesday and tell us when to come in for the procedure. Expects to be done by noon or before. Will be outpatient so afterwards we will be coming home.
What they propose to do sounds helpful, they will insert a small tube into her stomach and when nan begins to feel nausea or bloating she turns on the vacuum pump and pumps the contents out, then turns the pump off until the next time. They believe it will stop the nausea and vomiting completely and immediately. We certainly hope so. nan is so worn out from the dozens of vomiting episodes, perhaps a hundred or more by now that she can hardly think straight. This afternoon we dressed her at 4, she walked to the car, rode up front in the seat, got out to the wheel chair at the Dr. office, sat in the chair for 1/2 hour, then back to the car, got ice on the way home and she walked back into the house and headed to bed. She soon was asleep but I gave her Adavan anyway to facilitate her deep sleep. I think she will sleep until at least 10 pm.
On the good news front, some checks in the mail, immediate response from City of Hope. Dr. Chow sent the dates Nan was in Sutent trial and will send CD of the CT scans that show her progress there and ultimate failing of the Sutent drug. We need this as we apply to get AMN107 from Novartis. We have heard nothing from Boston yet, I'm thinking Dr. Morgan may be on vacation as he always responds instantly.
I moved appointments from Tuesday to Wednesday and now to Thursday so I can be with nan. Kind people from Tracy were willing to be here today and tomorrow plus Thursday but we had to let them know things had changed and I was here with her.
Thank you to the 6 families who took time to write encouraging messages today, thank you very much, this morning was pretty bleak as I kept on getting the run around from the medical people. Now its time to call the IRS, got to face that one, never fun.
Do you wonder sometimes at God's leading? His timing? What His thinking is about Nan or about your life as well. How does prayer work exactly? How can he hear my thoughts as I agonize with fear, hope, disappointment, time management, financial stresses? How does it all work?
So the day ebbs away, the sun has set over our little island with its palm trees, the cool evening breezes have arrived and the day winds down to a crawl. It has been a good day I guess, got some work out, some work reviewed, some appointments made, some money to put in the bank but Nan continues to be in limbo, Adavan induced limbo for her own good. Perhaps after tomorrow we can forgo the Adavan and help her back into recovery. My prayer is for God to heal the blockage, break it loose so things can work properly again, that God will control the tumor growth, that Nan can get back on her feet and feel better.
Dana dropped a bit of a bomb shell on us this afternoon. We knew her schedule was somewhat fluid but Nan had been looking forward so much to seeing she and Marilyn next week. Well Dana has some medical stuff to attend to so won't be there until the following week. I could tell Nan was hit hard by the news but we understand Dana has some health issues she must deal with and we wish her well as she does. We just can't wait to see Marilyn and in just a few days now. Someone for Nan to talk to, to do things with, to watch movies together.
Must say good night now, I'm fading fast and I still have some things to do for Nan, clothes to fold from the dryer, TPN to prepare and tonight I will go to bed before midnight as I get up several times during the night to check on nan and I'm falling behind in my sleep.
So good night good friends and family,
We send our love to all,
tim and nan
Its 8:50, nan has been sleeping since we got home at 6:30. The day did not go as we thought it would. First we called the doctor as instructed at 7:30 but he was on the road, please call back at 8:15, did and he said he had not been able to reach Dr. Gollupdi who would be the one to do the procedure. He said their office would call back with an appointment at 10:30. 10:50 no call back. I called and found they planned to see her on Thursday, I told the office lady we could not wait like that so they added her to the schedule and we went in for a 5:15 appointment. Nice doctor, asked the right questions and ended up saying he would call us from the hospital in the morning, Wednesday and tell us when to come in for the procedure. Expects to be done by noon or before. Will be outpatient so afterwards we will be coming home.
What they propose to do sounds helpful, they will insert a small tube into her stomach and when nan begins to feel nausea or bloating she turns on the vacuum pump and pumps the contents out, then turns the pump off until the next time. They believe it will stop the nausea and vomiting completely and immediately. We certainly hope so. nan is so worn out from the dozens of vomiting episodes, perhaps a hundred or more by now that she can hardly think straight. This afternoon we dressed her at 4, she walked to the car, rode up front in the seat, got out to the wheel chair at the Dr. office, sat in the chair for 1/2 hour, then back to the car, got ice on the way home and she walked back into the house and headed to bed. She soon was asleep but I gave her Adavan anyway to facilitate her deep sleep. I think she will sleep until at least 10 pm.
On the good news front, some checks in the mail, immediate response from City of Hope. Dr. Chow sent the dates Nan was in Sutent trial and will send CD of the CT scans that show her progress there and ultimate failing of the Sutent drug. We need this as we apply to get AMN107 from Novartis. We have heard nothing from Boston yet, I'm thinking Dr. Morgan may be on vacation as he always responds instantly.
I moved appointments from Tuesday to Wednesday and now to Thursday so I can be with nan. Kind people from Tracy were willing to be here today and tomorrow plus Thursday but we had to let them know things had changed and I was here with her.
Thank you to the 6 families who took time to write encouraging messages today, thank you very much, this morning was pretty bleak as I kept on getting the run around from the medical people. Now its time to call the IRS, got to face that one, never fun.
Do you wonder sometimes at God's leading? His timing? What His thinking is about Nan or about your life as well. How does prayer work exactly? How can he hear my thoughts as I agonize with fear, hope, disappointment, time management, financial stresses? How does it all work?
So the day ebbs away, the sun has set over our little island with its palm trees, the cool evening breezes have arrived and the day winds down to a crawl. It has been a good day I guess, got some work out, some work reviewed, some appointments made, some money to put in the bank but Nan continues to be in limbo, Adavan induced limbo for her own good. Perhaps after tomorrow we can forgo the Adavan and help her back into recovery. My prayer is for God to heal the blockage, break it loose so things can work properly again, that God will control the tumor growth, that Nan can get back on her feet and feel better.
Dana dropped a bit of a bomb shell on us this afternoon. We knew her schedule was somewhat fluid but Nan had been looking forward so much to seeing she and Marilyn next week. Well Dana has some medical stuff to attend to so won't be there until the following week. I could tell Nan was hit hard by the news but we understand Dana has some health issues she must deal with and we wish her well as she does. We just can't wait to see Marilyn and in just a few days now. Someone for Nan to talk to, to do things with, to watch movies together.
Must say good night now, I'm fading fast and I still have some things to do for Nan, clothes to fold from the dryer, TPN to prepare and tonight I will go to bed before midnight as I get up several times during the night to check on nan and I'm falling behind in my sleep.
So good night good friends and family,
We send our love to all,
tim and nan
posted by Tim Mustard @ 8:48 PM
6 Comments:
At 9:56 PM,
Anonymous said…
Hi Tim & Nan,
I'm not pretending to be a Wes, but it just occured to me that that stomach emptying thing would be great for those of us who need to lose weight!! Maybe start a franchise with that! I shouldn't make light of it but it is a new concept. Hope it solves the problem. We think of you both often. Love, Yvonne & George
At 10:40 PM,
Anonymous said…
Hi Nan and Tim,
I like Yvonne's idea about the use of the somach pump. The minute you feel full, turn it on. Great diet idea! For Nan it should mean the end to the incessant vomiting.
Dear lady, we hope and pray this is the answer and it will also resolve the intestinal kink. You are in our thoughts and prayers all day long and we are so glad there seems to be answer.
Tim, you are also in our thoughts and prayers that the Lord will give you the strength to endure through all this too.
We love you both and thank you for taking the time to put your story out there for us.
Love, Bob and Carrol
At 11:10 PM,
Anonymous said…
Tim and Nan:
It is 11:00PM but I had to read the blog before going to bed. Tomorrow we are supposed to leave our home in Indio at 5:00am. We have the car packed for a 7 hour trip to Gilroy where our other home is waiting.
We pray for both of you often even before our meals. Know that there are so many people out there that want the best for you. Tim, you must rest, a good night sleep does wonders.
---Connie
At 11:31 PM,
Anonymous said…
Tim,
I know that paradise is not perfect but it is paradise none the less. I am so gald that you share it with your friends when you visit there.
So the day ebbs away, the sun has set over our little island with its palm trees, the cool evening breezes have arrived and the day winds down to a crawl.
Wow that was nice. Maybe a little ice tea and a beautiful color for the sun set next time.
It is always appropriate to remember the beauty that is around us all the time. If we only look at the problems we miss the beauty that is there.
Wes
At 2:15 AM,
Anonymous said…
Aloha, Nan and Tim
Nan, you already know this, but Tim is an absolutely great guy and a wonderful human being. I can't imagine anyone more compassionate or caring. OK, maybe Mother Teresa.
I think about you often, and you both are in my thoughts and prayers. Best wishes for the AMN107 trial, especially if you go the compassionate use route, which eliminates a lot of the qualifying criteria.
Richard (and Linda too)
At 3:55 AM,
Anonymous said…
Good Morning from dry NC!
I know, I've forgotten what dry really is, but we're used to rain every week at least. It has now been about 3 weeks and the lawn is turning brown. The azaleas are still blooming however. The rain usually knocks them off by now. We do have a 30% chance of rain every day for the next week.
I'm sure it was disappointing not to have the procedure done yesterday, but today is another day and perhaps this is the day to be relieved of the nausea! At least someone has come up with a plan. Now let's hang on to that hope to be relieved of the pain and nausea ~ even if it is a stomach pump.
By the way ~ I may not be able to lose weight, but I'm not willing to trade places with you, Nan. That sounds like another bag to me ~ or at least another drain to care for. Yes, you are an amazing lady!
Tim, you are equally amazing in your own way. God has given you strength for each day as you minister to your dear Nan. When we marry and become one we hurt with the pain our mate feels. You just keep on going, loving her, caring for her needs and seeking yet more solutions for her discomfort. Someday you will get your reward!
Love and Prayers ~ Carol
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