Hard times, but improvements on the way–I hope!

It's been a hard week, but things are going better.

First I should say that Ian was poked and prodded by 4 doctors on Nov. 10 and given a clean bill of health. Hooray! He is doing so great.

I started the new trial chemotherapy drug Wed., Nov. 10 (which happened to be my Dad's birthday–Happy birthday, Dad). That day I also finished taking the steroid I'd been on since surgery to keep brain swelling down. I'm still on the anti-convulsant for a few more days, but that is the last thing I have to take due to surgery. I'm just waiting for all the scabs to be gone from my scalp so I can go get my hair shaped up. ;-)

Anyway, the next day was great. I even boasted on Facebook that I had done a half hour of Wii Fit yoga and gone for a walk (up a hill, no less). The next day fatigue set in and it got worse from there until I was in pain and in bed by Sunday evening. I won't go into all the gory details–and they were gory–but I started feeling better a couple of days later.

I still don't know if it was the chemo or leftover effects from the steroid or something else altogether, but I was pretty sick. No doubt my immune system is not at its best. My Dr. had me stop the chemo on Monday to allow me to recover some. I went back on it on Thursday–so today is day 3. So far, so good. I'm certainly not at 100%, but I'm doing okay. Yesterday I played the piano and did some weaving. Since it was raining I didn't walk, but was moving around the house pretty well.

I'm so grateful to our church folks, who have been bringing in dinner meals all week, so my family has eaten well in spite of everything! David has juggled being back at work and the kids schedules, including a trip to Oakland Airport early Thursday morning where Helen flew out for a long planned trip to see a friend in Austin, TX. She will be back late Monday. We've got to get this girl driving! She's close–maybe she'll have her license by the end of the year. Then, of course, she'll want a car!

Thankfully, David's father has also been doing better. We are looking forward to spending Thanksgiving with my folks in Mariposa and spending some time with David's family in Merced afterwards.

My hope and prayer is that I will continue to improve. Getting off the anti-convulsant in a few days should help. I know I truly have a lot to be thankful for this Thanksgiving. I hope it is a time of blessing for you and your family as well.

Thank you again for all the positive vibes you send my way. :-) More to be thankful for!

Love, Natalie

What's Next?

Dear friends and family,

I write this after an emotional day in which I made some hard decisions and had nearly 50 staples taken out of my head!

I expected to be offered options by my doctor but I don't think I realized the full ramifications, or the need to act immediately upon them. First of all, the surgery was very successful in that my surgeon was able to remove all the cells he could find without causing any deficits in my brain. But, there are still options to consider. Basically, my options were:

1. Watch and wait for the tumor to start growing again, which it inevitably will. Surgery can only do so much and there are always cells left behind. The area in which it could potentially start growing is in speech and language–not an area in which to mess around.

2. Do radiation therapy, which is the most sure way of getting rid of tumor cells, but also has the danger of causing deficits given the tumor site, some of which may not be apparent until years down the road.

3. Start on a chemotherapy drug that has been used for about 15 years. The drug is taken orally 5 days a month for 12 to 18 months. It has been shown the shrink the size of tumors.

4. Enter a new drug trial for a chemotherapy drug being tried on recurring low grade tumors. There are high hopes that it inhibits the recurrence of tumors. It also is an oral medication and is expected to be taken for about 12 months, but it is taken every day.

Ten years ago I was determined not to have chemo or radiation. I'm not sure I understood the ramifications of that determination then, but I better understand them now. It is an obvious choice to choose one of the chemotherapy alternatives. Either one has expected mild side affects and lots of tests to go along with them. The new drug trial is very new, there are only about 20 people on this therapy, all at UCSF, and they only intend to have 60 participants. There are a few more tests to endure, but not that many. On the side of jumping at this opportunity is the need for a biopsy within 3 months of beginning the trial (which I have because of surgery). I can also opt out at any time if it is not working for me and move to the chemotherapy that has been used for 15 years.

I have chosen the new drug trial option.

So, I started the process yesterday by getting initial tests out of the way. If I start the trial by Wed., Nov. 10, I can use my MRI after surgery as a base and that is one less test to do. I had a lung x-ray, an EKG and my blood drawn to check for Hepatitis. This morning I went for fasting blood draw that checked another batch of things. The last thing I did yesterday before we left the hospital was to have my staples removed. It hurt. It was nearly 1 p.m. We left home at 6:45 a.m. to make our appointment. I had already endured making a heavy decision and a variety of tests, and it was the last straw. I broke down on the way back to car.

Tomorrow we will go to Stanford for Ian's first 2 month check up. We have every reason to expect him to be given a clean bill of heath! But, this is something we will be doing every two months for the next year. And now, we will add lots of tests and a chemotherapy treatment to the the following year as well, much of it taking place at UCSF. On our way home we will stop there to begin my therapy.

It is a lot to take in when I'm not even recovered from surgery, but I feel it is the right decision to make. And, I trust that it will not feel so overwhelming in a week or so. The news is still good. Ian is doing great. I am recovering well and that fact that my tumor is at the same grade level gives me very good options. I can look forward to a high quality of life for years to come–many years.

My goal is to make to most of this next year. I want to find ways to thrive and live life to the fullest this year instead of seeing it as a burden. Our beautiful daughter, Helen, is about to launch out on her and is doing exciting things. Ian is growing into a young man we can be proud of and doing his own new things. There is potential in every part of our lives with which to engage with passion and creativity.

We feel truly blessed and very grateful. Our journey through health challenges this year reminds us yet again of our need to celebrate each day in love and life and joy. We hope our story can help others live in the full blessings of God each day.

We also covet your prayers for David's Dad who is dealing with multiple secondary symptoms from the Multiple Myeloma he has been fighting. While better at the moment, pain management and other issues are at times very difficult. It is especially hard on his mother, Barbara, and his sisters as primary caregivers. They can use all the prayers they can get!

Thank you so much for supporting us through this time. Love, Natalie

After surgery

I am now a week past surgery. I haven't updated the blog because I've been a little fuzzy headed. To be expected after brain surgery, I guess. And, David has been a little distracted. You can't tell by reading this, but it takes a little longer when I have so many typos to clean up!

The good news is the surgery went very well. They went back to the same place the tumor was growing 10 years ago and got all they could find of the returning tumor. The pathology is not back yet, but all signs point to the same grade of tumor–the lowest grade they give adult tumors. Obviously, we have to wait for official word. If the tumor is at the lowest grade, there is the possibility I can participate in a new drug study only being used at UCSF to prevent the return of low grade tumors. Hopefully, I will never have to had another brain surgery!

I expected to be in the hospital 3 nights, but got out a day early, so I came home on Thursday. And I got to wash my hair! This is a big deal when you have blood caked in your hair and the nurse has told you it will be 10 days before you can wash it! But the surgeon himself gave me the go ahead. The last time I had surgery I had half my head shaved, but this time they had "new haircuts" and only shaved the incision line and a few other spots they had to for surgery. So, with my curly hair, I look pretty normal. The thick line of staples is pretty well hidden, and I will have them removed on Monday, Nov. 8. (I haven't counted them, but there are a lot!)

My parents have been helping us out, staying with me and providing transportation and cooking and cleaning, etc. My dad, his skills always in demand, has even taken on a bathroom that is still unfinished from our remodeling project–the never ending remodel.

I have been out a little, went to church on Sunday and took a walk around to see some Halloween decorations, as you can see from the picture.

So, I am doing very well and appreciate all your prayers. We should find out about the pathology later this week, or, at the latest, on Monday when I see my oncologist. I am taking things slow and steady and expect to experience improvement every day.

I pray this finds you in a blessed place, as I feel blessed by you. Love to all, Natalie