Nan Mustard's Recovery

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

Thursday, June 21, 2007

Another rollercoaster of a day.....

Dear Family and Friends,
Nan had a pretty good night last night, only up a couple times to empty things. This morning the wound care nurse called at 8:30, said she was coming at 9 and actually did. That went fine.
I woke up very dizzy again, almost to the point I could not walk straight. This time it did not get better all day. I had to do quick research and then head to Dixon for an appraisal. I had misgivings about driving but really had no choice. This deal had been on and off about 4 times and was on again so I went. On the way I called Dr. Edwards, my friend from college days and he agreed to see me this afternoon. I drove directly there from Dixon and was seen very quickly. He prescribed some things to deal with an inner ear infection and I was on my way. Then to Longs to be told that my meds would be ready in 20 minutes but Nan's Sprycel was still being held up by "need prior authorization". While I waited I called our insurance carrier, Blue Cross. They have been so good over the past 10 years in giving Nan the care she needs. This time I was told to call back friday morning, that it was under review and nothing could be done to hasten it. I got home about 4 and went to work getting some work out that was due by end of day. At 5 the doctors office person called to tell me Blue Cross had denied Sprycel to us. I called Blue Cross and after waking through layers of people was told, patients could not talk to the Dr. who made the decision. He didn't really say no, he asked the doctor to supply two studies where Sprycel was used for GIST. I spoke to Dr. Melynk and he said he would search for such studies and I suggested Dr. Morgan at Dana Farber. At 5:30 I emailed Dr. Morgan and Travis to ask for their help with documentation. I hoped for an answer sometime on Friday. At 8:30 Boston time Dr. Morgan wrote back saying they would be happy to supply documentation to our Dr. What good news after a series of setbacks. Nan was devastated to learn about the turn down and broke into sobbing. She is feeling the effects of the growing tumors more and more each day and is coping with a lot of pain from the tumors as well. I then called Longs to see what the drug would cost us if we went ahead and purchased it. Using AAA discount the cost per month is $4,577. I went ahead and had them order the drug for a week and it will be in Brentwood tomorrow afternoon. My cost at that point will be $1,079. I just hope the AMEX works one more day as we have not received the money from the travel insurance to cover the $12,000 in medical expenses we had to pay to the ship and mexican hospital and I think the AMEX patience may be wearing a little thin. Dana was with us as this was unfolding and her big heart drove her to talk to Ronnie and she was ready to write a check for next weeks pills. I urged her to wait and we'll see what happens. She is so generous and has a huge heart but I really don't want to take her money. I believe we have a good chance with the insurance company once the doctor involved there has some proof that using this off label medicine has some evidence showing it can help. Nan and I would sure appreciate your prayers on this issue and on the whole issue of these growing tumors. Our hopes are to use Sprycel until AMN107 becomes available to us on the compassionate use. But I don't think much has been done on that front yet. Boston stands ready to help us get AMN107 quickly but we would need to travel there once a month and I'm concerned if Nan could make the trip there and back that often. She could if she can get stronger but we actually need to deal with the tumor growth before she is going to be able to get stronger.
Dana was the real entertainment director today, she left this morning and came back with several movies which they proceeded to watch filling most of the afternoon. Some were slow and some were great. Thank you Dana for your help once again. It makes the time pass more quickly.
Jason called this evening reminding us again that he is traveling in Utah representing MBA at a camp meeting and will be home this weekend. Jo is getting very ready to offload baby Timothy. She is hesitant about the pain she is facing but also excited about greeting little Timothy.
Tomorrow nan and Dana are going to venture out to get Dana's hair washed, can't get her hand that is healing wet yet. They plan to get Nan's toe nails touched up at the same time. Nan will enjoy getting out. Nikki has told us of a cancer walk that is being held this Saturday at the high school. If Nan feels up to it we plan to go there for the first round which is a survivor lap and I'll push her in her wheelchair.
Now I must go to bed. I am still dizzy, tired, sort of depressed a bit, behind in my work with the first appointment in Oakland tomorrow at 10 am with others to follow. Once again I find myself behind financially with no money in the mail today. I could easily use about $4,000 right now to get caught up with 941 deposits to the government and to cover tomorrow's payroll. I am finding the various tasks I must do every day to be very challenging and overwhelming at times. I simply place it all before God in the morning before I climb out and ask that He can use me during the day to care for Nan, do honest work for clients, somehow begin to get caught up with tax stuff, raise funds to cover a huge stack of bills, eat right, sleep right and keep a positive attitude. Sometimes I get so angry when I am driving at the littlest thing another drive might do and find myself sort of yelling and getting all worked up over nothing, my heart beats fast and I calm myself saying, is it worth a heart attack? Of course not.

Nan and I both really need your prayers and God's help. We face some pretty big challenges ahead.

So we seek your prayers and I'll keep you up to date on the Sprycel situation. I may need to ask for your help because if there is a chance that it will help Nan she will have the drug by any legal means I can find. She has battled too long and so bravely to be denied a tool she needs now.

love

dana, nan and tim

3 Comments:

  • At 4:15 AM, Anonymous roger and carol said…

    Good Morning,

    Tim, I'm so sorry your day was so frustrating yesterday. Medical insurance can be such a complicated maze at times. When you know there is something out there that might help and you can't get it ~ I'm sure it is very painful for you both. I think of the research Nan has done in the past to get into the experimental programs. Each time she has won and been admitted into the studies. Now to be hitting an immovable wall is of course devastating to Nan and you. With the Mustards putting some mustard behind it ~ you'll probably get your way...

    We had yet another 2X interest call yesterday. "Lord, what are you trying to do this time? What do you want us to learn? What is Your plan for our lives? We are getting weary and we think it is time to sell. We leave our plans our lives are in Your hands."

    And yes, that is all any of us can do for any issues in our lives. Tim, God is in control. Many prayers are ascending daily for Nan and you. Now we must trust and accept His leading. Calm down, take a deep breath and believe that God is near you. Could it be that the meds you desire so much could cause other problems? God is in control. He loves you both and doesn't want either of you to suffer. Just trust ~

    May God's ministering angels surround you both today as you deal with difficult issues.

    Continued love and prayers ~ Carol

     
  • At 9:51 AM, Anonymous Bob & Carrol. said…

    Hi Tim ,Nan & Dana,

    How well I remember the disapointment that sweeps over the One suffering from Cancer when a treatment Plan that has been presented as "The One Thing" that would bring relief & healing is rejected and You are told "NOT QUALIFIED" but the Lord had a different plan in mind for Carrol and Praise His Name it was the one that brought relief from pain and mobility back to her. The staggering cost of Medicine is also so very familiar to Us . When We were moving from the original treatment plan to the more anvanced long range Med the one reccomended was also $4,000.00 plus per week and there was little or no coverage at all on Our Insurance so again the Lord led Our Dr. to an alternative Med approach for Carrol that was only $150.00 per month and it worked wonderfully for 18 months and now She has been off of it for 7 months and counting. Later down the line we found that the high $$ med that was reccomended was not nearly as effective as first thought and only one in four had favorable results and those came with severe side effects. Our Dr. Calls Carrol A "Miracle Patient" We believe that He is right. As I write We again are waiting on MRI results and continue to Pray for good readings and that treatment can be prescribed to help Carrol even more in dealing with this devestating Cancer. I also have had the "Dizzy" stuff to deal with Tim , thank goodness for a Loving & caring long time Primary Care Doctor. He got Me in and addressed My Problem (Inner Ear) and in only 48 hours I was back to walking straight again and have not been bothered with it since. I do a prescribed 2 minute motion procedure once a month or more often if I feel it coming on again and it works like Magic.

    We will be renewing our Prayers for Nan's Tumor issue to be resolved, how We pray that She will be the one in ten that responds well to the Spyrcel (sp). I too feel that that once a month to Boston would be a bit more that She could tolerate at this time.

    May God Bless you Both,& may the Mail box be full of good things today.

    Love & Continued Prayers,

    Bob & Carrol.
    '

     
  • At 11:45 PM, Anonymous Anonymous said…

    Tim and Nan:

    So sorry to hear that Nan is not doing well and that her temperature is high. Your message states that you are on the way to the hospital at 9:15pm. I wonder if that was cancelled after you wrote this blog - Art told me that when he talked to you Nan's temperature was going down and you had decided not to go to the hospital. We are in Yellow Stone Nat'l Park and the time is an hour difference - we will talk to you tomorrow morning.

    Our road trip has been wonderful, we left June 11th and still have so many beautiful places to visit before we head home. The weather has been great other than at Mount Rainier. The best place for me was Glaicier Nat'l Park.

    We had not had good luck with cell phone coverage and had difficulty connecting with the wireless card in several areas. I just read a couple of blogs. You sound very stressed and tired. PLEASE Tim take care of your health.

    Art misses talking with you when he is not able to connect, please know that we think and pray for both of you daily even when we are having such a great time during this trip. Please continue to call, leave messages and Art will return the calls. We really care for both of you. Again, don't hesitate to call at any time, we are far away right now but I know that Art can give you emotional support.

    Our prayers are with you and we hope that tomorrow will be a better day for you and Nan.

    --Connie

     

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