Saint Sharon has it under control
Dear Friends,
Wait til Sharon sees that heading!!
Nan is doing well today, called me about 6:45 and needed to "get up" so I hurried over with biscuit and cinamon roll. We got her up to take her walk and she burned up the track, twice around and going strong. Picture this, Nan is charging along with her new green plaid walker and I am coming up behind doing a balancing act of keeping the tower from hitting her heels and not lagging behind so IV lines get tight, to loose and she might trip over them. Thats how we walk and I'm always glad to get back without hitting her ankles. She tends not to like things large and steel hitting her ankles.
She came back, sat in the chair, had biscuit, hot tea while I ate the cinamon roll. Then I took off to go get Sharon, another adventure but its easier to see what I am doing direction wise near Harvard Square and where I went 10 times wrong last night in the darkness. One little left turn I kept making over and over needed to be a straight ahead, not turn. Well I was happy to be on the right road this morning that I overshot the yellow Victorian where Sharon stayed. Had to back track and found her having breakfast with fellow residents. Turned out two were from Houston and one from Sharon's home town in Texas. They were talking up a storm, dragged her away to the car and we actually made it back to the hospital in 40 minutes without incident. Nan had finished her Cream of Wheat, milk, more hot tea, had taken her meds and was ready to return for a nap to the good ol bed. She has been up almost 3 hours, thats half the way home on a jet!!!! Sharon rubbed legs, hands, feet which Nan enjoyed very much. We have this good lotion which must feel nice. I have the softest hands in Boston since I have used the stuff so much rubbing Nan down. Leave it to Sharon, she opened the sack of wash clothes and folded them, tidied up the room and got Nan all settled in bed. Nan was asleep in minutes. Then Sharon hit the walking trail looking for a Dr. Pepper or something. Hope she does not get lost. Having family here is such a boost. We have been blessed with visits from Nikki, Keanna, Jason, Dana, Sharon, Roxanna, Marilyn and Roger and Carol who win the award for driving the furtherest. Everyone who has come has had a major impact on both Nan and myself. We have been lifted, encouraged and helped so much by the visits.
When I was with Nan this morning she said she had been thinking about our beloved children, Nikki and Jason. She said she realized that they had come because noone knew for sure if she would survive the ordeal. They she teared up a bit. They came because they wanted to see their beloved mother again, to encourage her along and yes to see her one more time. Gradually what the doctors have told us would happen is happening. Nan is becoming aware of more and more of what she went through and how blessed she is to be alive and doing so well. The doctors have told us that a full awareness of all the facts could take up to a year to happen.
I rose this morning sleepy but very thankful that I was once again able to see, to touch and to be with this precious human being. Both Nan and I talked this morning about what it means to still be here, why God has seen fit to save her life. We both feel we need to be there for others that God will put in our lives.
The two doctors who came in this morning commented that it was so good to see Nan smile. She seemed surprised by that comment but it is very true. Until the middle of this week I don't think she felt like smiling yet, just to much suffering and uncertainty. I am enjoying her smiles, humor and even gentle chides about not doing this or that. It means she is mentally great and physically doing better every day. Nan has complained for years about "things sticking in her throat". The doctors agreed to take another look at the tape of when they used the scope a few weeks ago looking for bleeding, to see if there is something unusual in her digestive tract that causes this feeling. If Nan ignores the warning feeling she usually has to throw up a bit to clear it so the feeling is very real, an indication that something is not quite right. Now that feeling works against her because she needs to eat lots of food and after a few bites she feels that something and has to stop for awhile. She needs to pig out but can't very well do that.
It is sort of scary when I stop to think and find myself thinking of this as home, not home in CA. No way is this home, this is camping out for me and for Nan like being in the military or something. We just need to get home to see our kids, our doggies, Nan's recliner (purchased on the way home from the last surgery 3 years ago), her own bed, her own kitchen with eatible food.
This is a hospital moment I hate yet understand. They are here to do vitals, of course she has been asleep less than an hour and needs her rest but vitals are more important. Numbers are good, blood pressure was 104 over 53, oxygen 99 %, temp 98.4. Now she is trying to go back to sleep again.
People ask us sometimes if we think this will change our lives, I think the answer is yes but I'm not sure how. We once again have the opportunity of starting to rebuild Nan's strength without tumors. It has been over 2 years since the new tumors were belatedly discovered and we have made dozens of trips to cope with them, many trips to City of Hope which is located near Glendale in southern California, sometimes by motorhome and usually by air, plus 27 trips to Concord by car for radiation for one dangerous tumor, dozens and dozens of visits to regular doctors and oncologists, trips to Sacramento the Sutter for stent replacements and consultations. It would be nice to be able to channel some of that energy into visiting friends, having friends over, traveling with our precious kids, visiting people we love in Denver, Idaho, Weed, Sacramento. We know that these tumors have a habit of coming back they have returned at least 6 times since the first one was removed. Our front line of defense this time is Gleevec and Rapamune (sp) which is a combination we have not heard about before. Dr. Morgan thinks this is the best we can do to hold off the return of future tumors and we trust his opinion. He and the team here at Dana Farber know a lot about GIST and see GIST patients every day. We will be returning here to Boston every two months for CT scans and Dr. visits because they know best how to read the scans for trouble.
There are no obvious reasons why Nan cannot rebuild her strength and start doing the things she loves once again, she may end of with pains she did not have before surgery. During surgeries like this sometimes nerves end up being touched or disturbed. When that happens Nan may end up with a dead area that has less feelings or feels strange when it is touched. She has a couple of those areas from the last surgery already and might have more now. Amazingly her pain level from the surgery has been very low. She has had almost NO pain meds since surgery and she is taking none now at all. Up to the surgery she was on 40 mg of oxycotin twice a day plus other things for breakout pain. Now almost no pain and no pain meds. She says the vacuum sponge is sort of creepy as she can feel it pulling her body back together where it was still open. It is amazing how good the wound looks due to the vacuum sponge. Probably another week of that they say.
On this day we rejoice in our blessings, we urge you to ask God for the blessings He has in mind for you. God loves to do good things, to shower little helps and touches to our everyday lives. But we have an enemy that wants to prevent the blessings, gets us so busy that we forget to ask, or so busy trying to solve our own problems instead of include God in the mix. For someone who works hard and trys hard allowing God to be in control almost feels like being lazy, yet there are many things to do, just not try to solve the things that are beyond our control at the minutes.
I am in no position to lecture anyone about anything, I am weak, shallow, thoughtless and undisiplined but I will not give up trying to do what is right and trying to be of help. God has been able to use me in spite of my being a rather poor tool and so I concentrate of what He has done instead of my faults. For years I have not made the best financial decisions. A lot of money has come through my hands and my love for big ticket items like a boat, a motorhome, a home on the lake, a nice car, I have not been responsible like I should have been and now when I need that nice 6 month nest egg financial advisors talk about I found out that my egg lasted about 6 days. Due to your help I think and pray that we are going to make it, I don't pretend that the next few months are going to be easy. When we get home it will be a tough balancing act to be with Nan as much as I can and yet work as hard as possible. Yet I do believe things will work out right.
Nan and I hope you have a good Sabbath day, a good Saturday and that you will enjoy family, friends, projects, camping, whatever, treasure life and buy those flowers for the kitchen table, send that card of thanks for someones kindness, touch a neighbor who needs help, play with the kids or grandkids.
We send our love and appreciation. We wish you were her or we were there. Please continue to pray that Nan's recovery will get moved over to the rehab place on monday and that soon, very soon we can say goodbye to Boston for awhile. All of this is God willing!
love
tim and nan and sharon
Wait til Sharon sees that heading!!
Nan is doing well today, called me about 6:45 and needed to "get up" so I hurried over with biscuit and cinamon roll. We got her up to take her walk and she burned up the track, twice around and going strong. Picture this, Nan is charging along with her new green plaid walker and I am coming up behind doing a balancing act of keeping the tower from hitting her heels and not lagging behind so IV lines get tight, to loose and she might trip over them. Thats how we walk and I'm always glad to get back without hitting her ankles. She tends not to like things large and steel hitting her ankles.
She came back, sat in the chair, had biscuit, hot tea while I ate the cinamon roll. Then I took off to go get Sharon, another adventure but its easier to see what I am doing direction wise near Harvard Square and where I went 10 times wrong last night in the darkness. One little left turn I kept making over and over needed to be a straight ahead, not turn. Well I was happy to be on the right road this morning that I overshot the yellow Victorian where Sharon stayed. Had to back track and found her having breakfast with fellow residents. Turned out two were from Houston and one from Sharon's home town in Texas. They were talking up a storm, dragged her away to the car and we actually made it back to the hospital in 40 minutes without incident. Nan had finished her Cream of Wheat, milk, more hot tea, had taken her meds and was ready to return for a nap to the good ol bed. She has been up almost 3 hours, thats half the way home on a jet!!!! Sharon rubbed legs, hands, feet which Nan enjoyed very much. We have this good lotion which must feel nice. I have the softest hands in Boston since I have used the stuff so much rubbing Nan down. Leave it to Sharon, she opened the sack of wash clothes and folded them, tidied up the room and got Nan all settled in bed. Nan was asleep in minutes. Then Sharon hit the walking trail looking for a Dr. Pepper or something. Hope she does not get lost. Having family here is such a boost. We have been blessed with visits from Nikki, Keanna, Jason, Dana, Sharon, Roxanna, Marilyn and Roger and Carol who win the award for driving the furtherest. Everyone who has come has had a major impact on both Nan and myself. We have been lifted, encouraged and helped so much by the visits.
When I was with Nan this morning she said she had been thinking about our beloved children, Nikki and Jason. She said she realized that they had come because noone knew for sure if she would survive the ordeal. They she teared up a bit. They came because they wanted to see their beloved mother again, to encourage her along and yes to see her one more time. Gradually what the doctors have told us would happen is happening. Nan is becoming aware of more and more of what she went through and how blessed she is to be alive and doing so well. The doctors have told us that a full awareness of all the facts could take up to a year to happen.
I rose this morning sleepy but very thankful that I was once again able to see, to touch and to be with this precious human being. Both Nan and I talked this morning about what it means to still be here, why God has seen fit to save her life. We both feel we need to be there for others that God will put in our lives.
The two doctors who came in this morning commented that it was so good to see Nan smile. She seemed surprised by that comment but it is very true. Until the middle of this week I don't think she felt like smiling yet, just to much suffering and uncertainty. I am enjoying her smiles, humor and even gentle chides about not doing this or that. It means she is mentally great and physically doing better every day. Nan has complained for years about "things sticking in her throat". The doctors agreed to take another look at the tape of when they used the scope a few weeks ago looking for bleeding, to see if there is something unusual in her digestive tract that causes this feeling. If Nan ignores the warning feeling she usually has to throw up a bit to clear it so the feeling is very real, an indication that something is not quite right. Now that feeling works against her because she needs to eat lots of food and after a few bites she feels that something and has to stop for awhile. She needs to pig out but can't very well do that.
It is sort of scary when I stop to think and find myself thinking of this as home, not home in CA. No way is this home, this is camping out for me and for Nan like being in the military or something. We just need to get home to see our kids, our doggies, Nan's recliner (purchased on the way home from the last surgery 3 years ago), her own bed, her own kitchen with eatible food.
This is a hospital moment I hate yet understand. They are here to do vitals, of course she has been asleep less than an hour and needs her rest but vitals are more important. Numbers are good, blood pressure was 104 over 53, oxygen 99 %, temp 98.4. Now she is trying to go back to sleep again.
People ask us sometimes if we think this will change our lives, I think the answer is yes but I'm not sure how. We once again have the opportunity of starting to rebuild Nan's strength without tumors. It has been over 2 years since the new tumors were belatedly discovered and we have made dozens of trips to cope with them, many trips to City of Hope which is located near Glendale in southern California, sometimes by motorhome and usually by air, plus 27 trips to Concord by car for radiation for one dangerous tumor, dozens and dozens of visits to regular doctors and oncologists, trips to Sacramento the Sutter for stent replacements and consultations. It would be nice to be able to channel some of that energy into visiting friends, having friends over, traveling with our precious kids, visiting people we love in Denver, Idaho, Weed, Sacramento. We know that these tumors have a habit of coming back they have returned at least 6 times since the first one was removed. Our front line of defense this time is Gleevec and Rapamune (sp) which is a combination we have not heard about before. Dr. Morgan thinks this is the best we can do to hold off the return of future tumors and we trust his opinion. He and the team here at Dana Farber know a lot about GIST and see GIST patients every day. We will be returning here to Boston every two months for CT scans and Dr. visits because they know best how to read the scans for trouble.
There are no obvious reasons why Nan cannot rebuild her strength and start doing the things she loves once again, she may end of with pains she did not have before surgery. During surgeries like this sometimes nerves end up being touched or disturbed. When that happens Nan may end up with a dead area that has less feelings or feels strange when it is touched. She has a couple of those areas from the last surgery already and might have more now. Amazingly her pain level from the surgery has been very low. She has had almost NO pain meds since surgery and she is taking none now at all. Up to the surgery she was on 40 mg of oxycotin twice a day plus other things for breakout pain. Now almost no pain and no pain meds. She says the vacuum sponge is sort of creepy as she can feel it pulling her body back together where it was still open. It is amazing how good the wound looks due to the vacuum sponge. Probably another week of that they say.
On this day we rejoice in our blessings, we urge you to ask God for the blessings He has in mind for you. God loves to do good things, to shower little helps and touches to our everyday lives. But we have an enemy that wants to prevent the blessings, gets us so busy that we forget to ask, or so busy trying to solve our own problems instead of include God in the mix. For someone who works hard and trys hard allowing God to be in control almost feels like being lazy, yet there are many things to do, just not try to solve the things that are beyond our control at the minutes.
I am in no position to lecture anyone about anything, I am weak, shallow, thoughtless and undisiplined but I will not give up trying to do what is right and trying to be of help. God has been able to use me in spite of my being a rather poor tool and so I concentrate of what He has done instead of my faults. For years I have not made the best financial decisions. A lot of money has come through my hands and my love for big ticket items like a boat, a motorhome, a home on the lake, a nice car, I have not been responsible like I should have been and now when I need that nice 6 month nest egg financial advisors talk about I found out that my egg lasted about 6 days. Due to your help I think and pray that we are going to make it, I don't pretend that the next few months are going to be easy. When we get home it will be a tough balancing act to be with Nan as much as I can and yet work as hard as possible. Yet I do believe things will work out right.
Nan and I hope you have a good Sabbath day, a good Saturday and that you will enjoy family, friends, projects, camping, whatever, treasure life and buy those flowers for the kitchen table, send that card of thanks for someones kindness, touch a neighbor who needs help, play with the kids or grandkids.
We send our love and appreciation. We wish you were her or we were there. Please continue to pray that Nan's recovery will get moved over to the rehab place on monday and that soon, very soon we can say goodbye to Boston for awhile. All of this is God willing!
love
tim and nan and sharon
posted by Tim Mustard @ 8:10 AM
2 Comments:
At 11:48 AM,
Anonymous said…
Hi Erin,Tim,Sharon:
I'm so glad to hear the Sharon has arrived, Erin will sure feel better with her there. Looks like the big move will happen on Monday I hope all goes well for you Erin. I think you will be out of there very soon and on your way home. Ann will be coming back on Monday. She has been gone for almos 3 weeks. She went to New York to see the girls and then she went to Oslo to go to a wedding. She was going to meet the girls in London and they have spent a week in London. I have not heard from her but I'm sure that they are having a great time. It was going to be a very buisy time for her. I have been alone in the office but it is not very buisy. I have managed some time for the grandkids which I sure enjoy.
Erin take care and keep on fighting I will see you very soon.
Give my love to Sharon and I hope to see her soon in California so that we can all get together.
Love you all
Mary Puente
At 4:04 PM,
Anonymous said…
Hi Mustards,
So good to read all the good news and positive developments that are happening in Boston.
Don't sell Yourself short Tim , You are the Glue that is holding Nan together along with the help of Friends , Family, & above all The Good Lord.
Some day we will understand all this stuff but for now we Wait, Watch & Pray for the Lords will to be done and the understanding to accept whatever it is.
Have a good night of rest , All of You, and expect good things in the Morning .
Love You,
Bob & Carrol
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