Nan Mustard's Recovery

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

Monday, August 06, 2007

Pain, blockage, sleep

Dear Family and Friends,
As I write Nan is sleeping in her hospital bed on the other side of the office wall. Today when she has been awake the pain in her lower back has been unbearable and after a while she asks for Adavan and goes to sleep. She had a good night only waking once. Her temperature was only slightly above normal this morning and last night she slept with a blanket and open doors and windows, it was 58 outside. She has learned to start off with a huge leg pillow which elevates her legs well above the rest of her body and then during the night she kicks it out and uses a more conventional pillow as a trade. Starr, her wonder dog, slept right beside her all night and made no move when I got up around 7. At 8:30 Nan woke up, we pumped her stomach, gave her Zophram and shortly thereafter she came downstairs to her chair. It was cold enough that she got to use the nice electric cover that Nikki gave her. After a few hours she was suffering too much from lower back pain and moved to the bed where she has been the rest of the day. We changed her fistula dressing as that is once again draining heavily. The tumor beside the fistula is huge and looks like it might pop. We have to do the dressing differently now due to the tumor size. We have pumped her stomach several times today to remove backed up juices.
I wrote an email to Boston this morning with questions regarding meds we might use for fever control if we had a need. Travis said Advil was OK to use. He also said that all the AMN compassionate users they are in contact with take 400 mg of AMN each morning and evening. Nan is taking just 200 mg each morning and evening. So leave it to the bull dog, I called our oncologist and asked if he would make an attempt to get Novartis to consider allowing Nan 400 instead of the present 200. He is concerned about limited kidney function as AMN can be hard on kidneys and Nan's operate at a level of about 15 or 16% with higher than normal creatins as a result. He agreed to take a new look at the results from todays blood work and if the creatin level is reasonable then he might talk to Novartis. I appreciated being able to talk with him as he is a very busy guy.
If Nan feels up to it in the morning we plan to take the motorhome to MBA and visit with Jason, Jo and Timothy again. We will probably just stay overnight and then come back the next afternoon. Nan would really like to see him again and of course so would I. We may try a different route this time as the one we normally use seems to be nothing but huge bumps. We think we will consider going down Freeway 5 to 152 and go across to 101 and then across 129. It is worth a try and perhaps the road will be much smoother than the other way. Do you have any thoughts on the different route?
I lost some hair today finally submitting to a hair cut and also went grocery shopping. Dana has covered all the shopping for the past 2 months which was a real blessing but now I'm back to it and thats OK. Got everything I could think of that Nan might like to eat just in case she feels up to it.
Marilyn has been very attentive to Nan's needs today, met Terry this afternoon and is content to read her book. When nan is awake they talk and watch judge TV shows or CSI shows.
I've been doing lots of research for a client who may have many orders to place soon. I have 5 orders right now to schedule and I can't get a one of them to call me back with a time. It goes like that sometimes, other times the whole day lines up instantly.
I've had a battle keeping focused on work today as I know Nan is very discouraged and down with fears and concerns about the tumors. It is very hard to think of anything else. We are doing what we can to survive but there is little joy in our lives right now. Not complaining, just saying it like it is. Nan had tried to reduce her oxycontin level to 80 mg morning and 80 mg evening but I think her back pain is much worse on the lower dose. That decision is up to her to make. She does not like to take so much pain med yet can't live with the terrible pain without the meds.
I want to thank you for your gifts which have arrived in various methods, handshakes, cards, letters and in all amounts. Over the past 14 months I've had lunch money given me, spending money given me, large amounts for the recovery fund and a couple bucks sometimes just to have something in the pocket. We appreciate it all. You have made the difference in us keeping our home, buying groceries, being able to watch Christian TV on the dish, buying meds, hotel bills, airline tickets. I was adding up the different amounts we spent in 2005 and just the trips to City of Hope in Burbank ended up being thousands of dollars, flight for 2 there, rental car and fuel, one night stay or more in hotel, various expenses to the hospital itself, meds, meals. Somehow God has stretched the resources and we have been able to do whatever we needed to do for Nan's care. Looking back over the past 11 years its been an amazing journey with dangerous surgeries, trials, new meds, old meds, always trying to makes things better and to fight off the GIST tumors which come back faster each time. Nan has been an amazing person through all of this, seldom breaks down, seldom complains, just faces each new disaster with grace and determination. I know of no other woman who could have faced all of this in the same manner as Nan has, just makes my love and admiration for her stronger every day. There have been so many milestones, seeing Nikki and Steve married, seeing Keanna born, seeing Jason and Jo married, now experiencing Timothy as a newborn.
So it goes, we intend to continue to do everything we can to support Nan's life and the results are in God's hands. We have learned to fight, to seek, to question, to promote, to push, to accept nothing less than the best available.
I was glad to see Nan on her phone today, not sure who she was talking to but I know its good therapy for her to talk and share and receive encouragement. Please call and if you don't get her call again later. When you do so you are an active member of her treatment team and are doing something proactive to help her get through the day. Don't wring your hands with worry, ring the phone instead!
Please keep Nan in your prayers, blockage, tumor control, pain!

love from our quiet place to yours,

tim and nan and marilyn

26 Comments:

  • At 10:16 PM, Anonymous Anonymous said…

    Tim & Nan,
    Going down 5 to 152 is the only way I ever go from Tracy and I don't remember any rough roads.
    Sandy Johnson

     
  • At 10:41 PM, Anonymous Anonymous said…

    Just dial 1-800-CAL_LNAN and you will get to talk to a real person. What a relief! I talk to a lot of recorded voices but hardly ever get to talk to a real person. This would also be special because I wouldn't be talking to a person selling me something! Oh! Happy Day!

    Oh, rats I dailed the number and nothing happened what's a caller to do? Call information I guess. Hey Tim, the 1-800-CAL-LNAN number didn't work. Can you help redirect my call to the correct party? Thanks.

    Wes

     
  • At 5:37 AM, Anonymous roger and carol said…

    Hi Tim,

    What can a person say? Poor Nan must be feeling very frustrated and disappointed about now. You both had such high hopes for the AMN and the tumors continue to grow. Nan has been very fortunate that the other experimental drugs did stop the growth for at least a time. And as you said, since her first diagnosis of GIST she has witnessed the marriage of both children and now seen the offspring of each. What a blessing! God is good.

    Nan has been a real trooper and gone and done about everything she wanted to do. Her courage, strength, determination and faith have been an inspiration to literally hundreds of us. She in entitled to some "down days"! GIST really is a very cruel disease!!! I'm glad they are continuing to do the research on this. Several times as she started a new experimental drug I heard Nan say, "It may not help me, but it might help someone else". The AMN is another "experiment" and it may not help her, but it may help someone else. We thank the Lord for people like Nan who have helped in this research.

    Continued Love and Prayers ~ Carol

     
  • At 8:24 AM, Anonymous Anonymous said…

    Nan and Tim,

    I hope that you get to make the journey this week and that it is filled with JOY.

    I am sorry to hear that the tumors continue to grow, please let the drug "kick in".

    My thoughts and prayers are with you today as is everyday.

    Sue M

     
  • At 9:15 AM, Blogger divatobe said…

    Tim and Nan,

    I read your blog regularly--while I don't often comment, you are in my prayers. Reading of your experience helps to keep the daily stress of life in perspective. Your joyful/filled faith has blessed me for so many years. I'm pretty sure you didn't sign up to be an inspiration to so many, but you are. Thank you!

    Laurie

     
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