Good stuff

I hope the new year has started well for everyone. Ian sailed through his second 2 month check up on Jan. 11 with flying colors. There's no sign of that nasty cancer. We will do a PET scan for the next 2 month check. They wouldn't normally do a PET until the one year mark, but we didn't get a clear scan the last time because Ian had a cold. Meanwhile, he continues to gain back his lost weight (only 4 lbs. to go) AND grow taller. He checked in at 6 feet, one-half inch. He's even with his sister and will soon be as tall as David!

Speaking of David, we dropped him off at UCSF the day we went to Stanford so he could attend an appt. with his Dad. He has a new Dr. who has a little different take on things. The news he gave John was good, though. John has been able to keep his various pains under control and his new Dr. sees no reason to put him back on any chemotherapy right now. "Amazed and pleased," is how David puts it.

I'm doing fine, although I've had a couple of minor, irritating side effects pop up from the chemo. Hopefully my body will continue to adjust and they will fade away. Or, maybe I'll get used to always having a sickening sweet taste in my mouth and a few itchy bumps. I was concerned the sweet taste might be due to an elevated blood sugar level (a common side effect), but my blood numbers look good. Thank goodness!

Our household is about to undergo a major change. Helen is moving out to live closer to the college she attends. I'm thankful she's not going too far and I will be able to have lunch with her once in while. ;-) Please pray that she stays safe and has wonderful adventures out on her own!

Here's hoping your own adventures are wonderful this year. Until next time, blessings to you.

Love, Natalie

So far, so good

We've all made it through the holidays–whew! I hope yours were wonderful. We actually wrote a Christmas letter, but never got it sent out. So, let me say here and now, Happy Thanksgiving, Happy St. Nicholas Day, Happy Hanukkah, Merry Christmas, Happy New Year, and whatever other holidays you may have celebrated! I hope they have been a blessing to you and a reminder of what is truly important in this life.

Our holidays were good. We got to be with both our parents over Thanksgiving–and I didn't have to cook anything. We celebrated Christmas with a Christmas Eve service including a reader's theater play David wrote (a funny, modern take on the story of Christ's birth) and by helping with a community Christmas dinner on Christmas day. I sang Christmas songs as part of the entertainment–more singing than I've done in a while! We also spent time with most of David's family in Merced after Christmas. New Year's Eve found us home playing games and watching movies as a family.

For a while there I was wondering if I would be able to handle taking the drug trial chemo long term. I've had my ups and downs. But over the past month I've improved dramatically. The mouth sores that were so miserable have been solved by Lysine supplements and I seem to have adjusted to the drug. There are only a couple of minor irritants I am currently dealing with.

I had a long day at UCSF today. I endured another battery of neuropsych testing to make sure my brain is functioning properly (it is). I had an MRI and met with my oncologist and his nurse and had a chest x-ray (protocol while I'm on this chemo.) The MRI I had today will be a baseline for the MRIs I will have over the next couple of years–the length of time I could be on this chemotherapy. The Dr. saw exactly what he expected to see after surgery and no visible growth. Although my surgeon removed all he could see and remove safely, there are places that indicate there may be additional cells. Those are what he will be watching over the next two years.

Ian has continued to do great. Today he's working on making an electricity magnet generator. Tomorrow he will be with a group of friends working on an engineering project–ever the creator. ;-) Next Tuesday he has his second two month check up at Stanford. Last time, he had a clear chest x-ray and was poked and prodded by four doctors who were all satisfied that he was cancer free. I expect a similar report next week.

As always, we are so thankful for your thoughts and prayers for us and also remember many of you in our own prayers. May you find blessings and the love of God everywhere you turn in these difficult days.

Love, Natalie

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

Preparing for surgery

I feel the need to be in touch with everyone as I go into this final week before surgery. Overall, I am doing well and the family is doing well. Helen is busy with college classes, catching up after her play. Ian is doing great–as active as ever. David is holding down the fort at church, which is struggling with some serious challenges, in addition to supporting me and the kids emotionally. I know he is drained and is looking forward to the down time we will take following surgery.

For me, there are ups and downs. Although I know fairly well what to expect from my surgery, the field has changed and advanced in significant ways. And there is the unknown of what they will find in there! In addition, I had two years to focus on my health and wholeness before my last surgery. This time, I have been a little distracted, to say the least. I have turned my focus more inward in the last few weeks so I can be in the best shape mentally, physically and spiritually that I can, but, honestly, it's a challenge. It has been a blessing to spend extra time with friends and our community continues to support us in wonderful ways.

I am looking forward to Sunday. A part of our Sunday morning service will be devoted to a time of prayer for me. I would love to gather friends near and far around me. If you can be there, no matter what your faith tradition may or may not be, please come to Community Presbyterian Church, 1407 Third St., Calistoga, at 10:30 this Sunday, Oct. 24. If you can't be there in person, I know you will be with me in spirit.

My surgery is 7:30 a.m. Tuesday, Oct. 26. David will update the blog and be sending out emails as soon as he can. We look forward to good news and a positive time of healing soon!

Thank you all for being such a blessing to me. Love, Natalie

Surgery news

David wrote a great email summing up our currents "stuff," so I'm putting it here for our blog. There is enough on our minds with that we are feeling the strain at times and have to work to deal with it all in the best way we can. Fortunately there are also blessings, like the play Helen is in at the JC, Ian's 15th birthday celebration and the gift of a tennis mentor who would just like to work with Ian for as long as he enjoys the game. Thank you again for your love and prayers. Love, Natalie

Hello All,

I want to keep everyone informed as to where things are and how things are going. The support we continue to receive throughout this time has been wonderful. Ian has fully rejoined swimming and is now taking tennis lessons and loving it! He celebrates each day of remission in his own wonderful ways.

Natalie will have her brain surgery on Tues. Oct 26 at UCSF. The Friday before she has a whole day of prep, as well as Monday the 25th. They tell us she will be in the Hospital through Friday and if all is well should come home then.

With this news of more prep and longer stay than we anticipated and what she went through last time the reality of what is coming is setting in. Overall we're both doing quite well but we both find ourselves at times standing in a room looking around going, "now what am I needing to do?"

We are confident of God's love and presence and are reminded again of the beauty and blessings of each day. But please hold us, and Ian and Helen, in your thoughts and prayers as this journey is fraught not only with bumps and bends but also many whispered fears.

Blessings,

David

BTW, our family was deeply involved this year in Relay for Life and it appears our we have raised over $43,000 in Calistoga! Great work and may they develop more cures!