Nan Mustard's Recovery

This blog is a record of Erin (Nan) Mustard's recovery.

Friday, June 08, 2007

Friday evening, all is quiet

Dear Family, Friends and GISTers,

Nan went to see Dr. Melynk today, her oncologist for the past 10 years. He was pleased to see the feet normal size, no swelling and no pain like two weeks ago. He has the same concerns as we do about the tumors growing rapidly and we went over the things that need to be assembled to appeal to Novartis for AMN107 but he cautioned that getting past the hospital board can take time. In the mean time he is researching using the drug that Dr. Morgan suggested in an email as an alternative to AMN, Sprysel or something like that. Dr. Melynk was aware of the drug and said it is used for CML patients when Gleevec fails for them. He is to call this weekend with the results of his research and we might be able to start on that immediately as is is available now. It could slow or stop the growth of the tumors until we could get to the AMN107 which could easily be 6 weeks or more. He also did a request for a better pumping system from Apria and they are checking insurance about that, one that would come on and off during the night on its own. He also updated the prescription for Aciphex, the drug that will help Nan's body heal in her esophagus (sp) where there are small ulcers from the acid when nan was throwing up. He also prescribed a new bottle of the Dilautid which Nan uses for break out pain. The visit was helpful and we were reminded again what a nice person Dr. M is.
We are noticing that there is more and more in the colostomy bag, not normal amounts yet but more which is mildly encouraging. I have extra hydration going in tonight since there is a lot of fluids going our of Nan's body and not as much going in. When she drinks we pump it back out and we pump quite a bit beyond what she drinks.
It was a great deal of work for Nan to dress, walk to the car, ride in the car, sit in the wheelchair at the doctors office, then ride back to the car, get in and recline the seat, drive to Burger King for our Coke Icee and then on home. Once we got home Marilyn helped her get settled in her bed upstairs and she rested and watched TV and gossiped on the phone and with Marilyn. I headed out for a San Jose appointment. The home was very nice and the lady had lived there for 52 years, can you imagine how she feels as she leaves her home behind and moves to where her son lives in Utah? Then after finishing allowing the GPS to guide me to the comparables I headed back to Brentwood to pick up prescriptions. What an experience that is on a Friday afternoon as most of the population of San Jose leaves and heads to Tahoe over Highway 680. It took some time to get back, probably double the normal time. I was in the Fiero with its stiff clutch, no AC and no power steering. Sort of like being at the gym, a real workout. Actually I enjoyed the challenge though. Sandi, our favorite pharmacist at Longs was there today and asked about Nan and reminded me that she is praying for her. What a help she has been over and over again as we sorted out conflicting medicines from different doctors and different hospitals.
Then home arriving at about 7:45. Keanna was entertaining the troops, had her little steps in place so she could get up on the bed with her Grammy when she needed to. She and Marilyn had bonded and were having fun. She and I went into her room and I installed the AC back into the window for the summer and so her sleeping tonight could be cool and comfortable. She had already eaten and was supposed to be heading to bed. She slipped on the stairs and hit her head raising a little bump so we let her watch her DVD for a while just to keep an eye on her in case there was a complication. Other than the bump she seems to be fine and she has just finally gone to sleep now. She will be sort of grouchy tomorrow I am afraid. What a precious little person, so full of energy and ideas. Marilyn is good with her and Keanna loves her already.
Nan has been tired today and has had some pain. She changed her colostomy bag tonight for the first time in a few days and the skin was very raw under part of the bag so she put her special powder on it and we'll need to change it more often to get the skin back in good shape.
Nan is really loving having Marilyn here and I think Marilyn is enjoying helping Nan as well. They seem to be enjoying doing stuff, reading, watching judge shows on TV, napping and talking together. It has helped Nan a lot to have someone here to spend time with her like this.

Tomorrow morning I am going to take Keanna to Sabbath School for the first time in awhile. We should enjoy that outing.

This afternoon Gary called from Kendal Automotive to tell me the VW was ready, then later he called to say that the clutch on the compressor for the AC was not working properly, I told him to just keep the car until it was working right. I can survive with the Fiero a few more days. It is disappointing that the clutch is not working right, not sure what is wrong. He said he ran it for 1/2 hour and it was perfect. Then they started it again and it started to smell like it was burning. Yikes.

this morning I woke, pumped out Nan's stomach and then headed for Tracy VW to get the parts, they were ready. Then I drove to Brentwood to deliver the parts and then back home to do some quick prep work to be ready for the Doctor with a file of papers for the AMM drug, then we loaded Nan up and headed to Antioch arriving on time this time, amazing really. Marilyn helps a lot in so many ways.

So we feel like we made a little progress today and while tired Nan still feels better than she did for the many weeks of vomiting. We are thankful for the blessings when they happen and we always want more. It would be a great blessing to see tumor reduction or even stability. It would be a wonderful event if the colostomy bag was full on a regular basis again.

Please join us as we pray for these things. May your weekend bring you closer to those you love including our blessed Lord.

love

tim and nan and marilyn

ps thanks for the nice conversations today, Art, Wes, Nikki, Jason and Barb and Gerry. Sure helps the day pass faster.

2 Comments:

  • At 7:36 AM, Anonymous Anonymous said…

    Tim,

    Don't think for a minute that I can't see through the subtrafughe. I can't spell it but I can still see through it. "Yikes, it smelled like it was burning", might need a translation for some of your lady BLOG readers. They of course think about how irritating it can be to have a car in the shop. We know the rest of the story.

    The story about the stiff clutch and the the work out and the smells like a burning clutch to me all add up to one thing. Tim you have been peeling out again. We thought that you had out grown this younger adult testosterone activity but as any male reader can see between the lines. You have again participated in this ancient ritual with the expcted results. A short lived clutch! Just pay the piper and race off to your next appointment.

    Congratulations on a good week of hope, caring, faith, friendship and thankfulness. Enjoy your Sabbath rest.

    Wes

    ps OK, I did project a little!

     
  • At 6:14 PM, Anonymous Roger and Carol said…

    Happy Sabbath!

    I hope It was a happy Sabbath and you were able to take Keanna to Sabbath School this a.m. Perhaps Nan was able to be up and about a bit more today.

    Maybe when you get your little black bug back it will be as good as new with A/C and non smoking clutch.

    At least it sounds like you had a good listening ear on Friday even if nothing much more than that was accomplished. Now with the vomiting stopped it should give her esophagus a chance to heal.

    I pray for a good week for you both this week.

    Love and prayers ~ Carol

     

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