Nan Mustard's Recovery

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

Tuesday, June 27, 2006

Tuesday morning

Good morning friends and family,
Nan was sitting upright and strong in her chair this morning at 6:30. She stayed in her chair for 30 minutes, brushed her hair, brushed her teeth, got to rinse her mouth out but had to spit it out, bummer. After awhile she started to attempt to rise from the chair and head for bed. It was all I could do by putting my head forward to hers for some quiet moments to persuade her that she needed to wait awhile yet and then wait for the nurse to guide her. She certainly has the will just not enough strength yet to do all she wants to do. Her nurse reports she slept very poorly last night and we hope she can get some sleep today in between walking and chair stops. Nan is not very happy right now. She is very impatient with the length of time it is taking to get better. She is very frustrated that she cannot eat or drink yet. One cannot understand how important little things like being able to have hot tea is until its been 3 weeks and you have not been able to have anything to eat or drink. This is a very big deal to her and I know she will feel much better when she passes that test and can feel more normal again. Loren is her nurse today and she just suggested to Nan that perhaps she could have someone from the pych staff come and talk with her. I'm not sure how Nan responded to that suggestion. I think it may be helpful since I don't have a clue as to what to do to help her. I just constantly express my pride in what she has accomplished, give her lots of positive comments about how good she is looking, comments about how nice it will be to walk out of here and head home. She talks of home constantly and getting on a plane. Can you pray that God will continue to guide in all things for us and for Nan's state of mind.

I am in the lovely state of affairs that tonight I have no hotel room. I was warned when the Dana Farber lady allowed me the $30 room that after 11 days I would have to move, I thought she was saying move to another room. She called yesterday to tell me that I would have to move out of 530 and for one night there would be no room. When I checked at the desk to see if I could book another room I was told there arn't any tonight. Well I have a room with lots of things that have been collecting, food in the frig and only two tiny suitcases since I only planned to be here a few days and packed in 5 minutes. So in a few minutes I will begin the scramble to find a room for tonight. Of course I get to move back into the same room 530 tomorrow and have it for several more days. So once more there is a bump in the road. Sure is unnerving to have to think about the room stuff when all I really want to do is care for Nan here in her room. At worst case I will sleep here in Nan's room in a chair and put all my stuff in a storage room at the hotel. Its been done before. Before I could sleep in the rental car but now there is no rental car. Its not fun being away from home and support but every time I start to complain to God about myself I shift to remember that its sure not fun for Nan to have gone through what she has and be stuck to bed for 3 weeks today. I truly have nothing to complain about whatsoever.

We are facing some crucial issues back home and the lack on income on my part is starting to catch up with our ability to pay bills that are due. I thought I might explain how a small business works, at least how our small business works. 18 years ago we started Discovery Appraisal Services. For several years Nan and I as licensed appraisers did all the work, we logged orders, inspected properties, wrote reports, printed them out and shipped them, we did it all just the two of us. Then as more work came in we hired someone to help with the office. At first we had the office in our living room. Gradually we began to hire people to help us appraise who we trained. Nan has turned out to be a tremendous teacher and reviewer and helped several people to become appraisers. When she and I prepared an appraisal all the income came to the company and we paid bills and took profit out to cover our own expenses, house, cars, food etc. Our appraisers are paid a split of the income and the amount we pay depends on years of experience, willingness to take hard distant assignments, ability and whether the appraiser had gotten the order on his or her own or had received the assignment from our clients. About 3 years ago after Nan's last surgery and while she was still in the hospital we decided together than Nan would retire from active appraising. Her strength level was diminished, her ability to drive long distances was compromised and we felt the best thing we could do for her was to let her stay home or travel as she felt not have to struggle with getting inspections and appraisals done. Nan kept on with doing the books and keeping the checkbooks up to date, paid the bills and did a balancing act with the income that was left. Our personal income went down because I was doing the appraisals on my own. Yet we discovered that if I worked smart and about 12 hours a day we could financially survive. That has been our situation for the past couple years. During that time as we battled her GIST cancer we found ourselves more and more either at hospitals, traveling to Boston to Dana Farber Cancer Institute, MD Anderson in Houston and finally dozens of overnight trips to City of Hope in southern california where she was allowed to be in the Sugen trial. So for 18 months we made a trip to City of Hope at least once every two weeks. At first the tickets were only $49 but then the prices rose until it was not uncommon to spend several hundred dollars for the overnight trip. Our people in the office were great about scheduling my appraisal appointments around these trips. In addition we had Dr. appointments for at least one day a week either with the oncologist or her regular doctor. In the fall she became so weak that we could only travel with a wheel chair. Beginning in September she began to receive radiation on one tumor that was causing nerve and blood vessel damage in her right leg. So for 27 days we traveled to Concord, about a hour each way, for radiation treatments. Most of the time she rode in a bed we had created in the back of her Honda Odyssey van. We had help with these trips, Lammerdings came down from Sacramento, Nikki was able to help and Roxanna came out from Conn. to help. I was amazed that the Lord seemed to make the appointments work out for afternoon, after I got back from taking her to radiation. Needless to say our income was effected in a dramatic way. Nate Frank assisted with the writing up of the reports after I had inspected the properties and that helped a great deal. When the Sugen no longer worked for Nan we began to scramble to find the next thing to do to control tumors that were beginning to grow at an alarming rate. One tumor was visible and was the size of an grapefruit. Nan had to get larger pants, 2 sizes larger, just to wear over the tumor. It seemed like the tumor was larger every day and it filled me with dread whenever I saw it. When an opening happened at Dana Farber Cancer Institute in Boston we jumped at it. We flew back to Boston and I stayed with Nan for 10 days in a nearby hotel as she was evaluated and accepted into the IPI504 phase one trial. That meant that Nan had to be in Boston or the area for 2 weeks at a time and then was allowed to fly home for 10 days before returning to Boston again. Our dear friends Roxanna and Rick who lived 2 hours away in East Lyme, Ct were kind enough to allow Nan to live with them during the 2 weeks in Boston portion of the trial and then took her to the airport so she could fly home for the 10 day off time. However Nan only got one home trip because the next off time was spent in having Dr. Steele attempt to internalize her nephrostomy tubes. That attempt did not work out but she lost her 10 day at home time. I was back here in Boston with her during that time for the first week, Nan does not get operated on across the country without me being with her. Once again I was away from work and generating income but it was the right and only thing to do. After I flew home Nan went to see her friends in N. Carolina but soon developed severe bowel blockage on hearly a daily basis. When she was put back into the hospital I flew an expensive red eye and was in her room the next morning at 6 am. I have been here ever since, now nearly a month. Our staff and appraisers have been totally awesome and have worked very hard covering our absence. They have done everything possible to hold the business together. What they cannot do is generate in come in the same manner as I can when I am seeing properties on my own. So that is our problem right now. I've been here a month and generated 0 income. Nan and I have asked God to take control over everything and we sleep at night knowing that He will. Yet I am torn by the need to return for at least a couple days to conduct a little business and the more compelling need to remain at Nan's side. Right now it is becoming clear that Nan will go to the main floor either today or tomorrow. They consider her stable and doing quite well. Dana arrives tomorrow from Texas and Marilyn will bring her up from Providence RI since that is where Southwest flys.

I am about to head to the hotel to beg at the front desk for a room for the night. If not they will bring a cot into the waiting room here at the hospital so I can sleep there. No matter, we will get through all of this in time.

I would like to ask that when you have the time please drop Nan a card. She really enjoys cards and having them around in the room. It reminds her of home and she sure needs that big time.

In a few minutes PT is coming to help her walk again and Nan has good energy today in spite of not sleeping very much last night. She is almost ready to use her cell phone now, was pushing buttons but not quite enough energy to get them fully pushed yet. Same with TV remote, that gives you an idea of how weak she presently is.

Well things are starting to move this morning so I'll write more later. Please keep Nan in the heart of your prayers. Her bleeding appears to be less and there appears to less concern from the GI team. Just not sure yet. Her creatin is going up so slowly now that they have put off the dialysis today, another good sign.

Thanks for your caring and prayers,

tim and nan

4 Comments:

  • At 8:26 AM, Anonymous Anonymous said…

    Hey Tim and Nan
    It's Amy, (your Nurse)I can't believe all this blogging you have been doing, what a great way to commmunicate with all of your remarkable friends. The prayers and kind words are working. I have read this morning and Tim i am concerned about your income for you so right now it is a good time for you to return home since Nan has become more stable. Her bleeding has slowed and HCT is up. I just wanted you to know that if your feeling that you have to stay, It's actually a good time for you to go home. It also sounds like you have some visitors coming so they can transition Nan to her new room on the floor. Please don't forget to take time for yourself. Nan is doing great, Psych, is actually a good idea she is somewhat depressed, Good for Lauren for thinking of that! Keep your good spirits up Tim! Nan is really doing remarkably, She has the will to LIVE and is getting stronger everyday!
    See you Thursday
    Amy

     
  • At 9:19 AM, Anonymous Roger and Carol said…

    Hey again,

    I'm glad to hear Amy is watching out for you! Tim, listen to her. They are taking good care of Nan and will continue to do so. I was very impressed when we visited how dedicated the entire staff is to her care. You need to relax and take care of Tim! If you do have someone coming out for a few days you probably need a break. Be assured that they will let you know of any changes. You have invested a lot of energy in her the last several months. You need to step back for a few days and take a deep breath. I'm sure you have no idea how really tired you are. Be good to yourself.
    We love you.

    Roger and Carol

     
  • At 3:04 PM, Anonymous Anonymous said…

    Tim,
    Where can we mail the cards to?
    Pam :)

     
  • At 6:43 PM, Anonymous Bob & Carrol said…

    Hi Mustards,

    We are and will continue to Pray for Healing for Nan's body and mental attitude and a less stresfull financial and work situation for You Tim.


    May be a good time to take a break while friends are going to be there for Nan.

    We wish there was more that We could physicaly do for You both but all that We can do is re assure you that We care and are Praying for You.

    God Bless,
    Bob & Carrol

    P.S.
    Amy's advise sounds like a good plan.

     

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