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!

Surgery Date

Hello all,

On Monday I went to UCSF for another MRI and to meet with my surgeon. As hoped and expected, the MRI shows no further growth since May. However, the difference in prior year's MRIs is still apparent and my surgeon feels surgery is still needed. He said it is not an emergency and I could chose a time that works best, although he would hope that I would not wait too long. I've chosen to have surgery sooner rather than later and not wonder when I might have symptoms. In light of Ian's 15th birthday on Sept. 25, Helen's play the first 2 weekends of Oct. and a couple of other events David is involved in, I opted to ask for a date after Oct. 25. On Thursday I learned the date will be Oct. 26. I'm confident in my surgeon, one of the best in the world, and believe all will be will.

There is the possibility I will be encouraged to follow surgery with chemotherapy or might participate in a study using a new drug that inhibits the return of low-grade tumors. I will learn more after the pathology study is done.

When David called his folks on Monday with our news, he learned his father was fighting a fever. He ended up admitted to the hospital and diagnosed with a pulmonary embolism. This was pretty scary and very likely was caused by the cancer drugs keeping his Multiple Myeloma under control. He is still in the hospital, but has been moved out of the ICU and will go home tomorrow. We are thankful!

We are also thankful Ian is back to swimming, increasing his energy and appetite! We will both walk the survivors' lap in tomorrow's Relay For Life and he will be giving a speech during the lighting of the luminaria as the Relay's Honorary co-chair. Helen is doing well, focusing on theater classes, the play, and French this fall.

We are thankful, too, for all of you and pray you are well, even as you pray for us.

In love, Natalie

Remission!

We just arrived home from Stanford where Ian's Oncology Drs. gave us the results of the scans taken Aug. 23. The news is very good. The CT scan was completely clean and PET CT scan only shows a small highlight that is very likely not related to the cancer. The Drs. feel very good about how Ian is doing and even gave him the go ahead to swim with his swim team in the late afternoons even though the sun is still out. Technically he's supposed to stay out of the sun for 3 months after radiation because that area is very sensitive.

Ian also had a chest x-ray today because he has a bad chest cough from a cold he came down with more than a week ago at the homeschool camp Aug. 24-31. But, the x-ray was clean, so we are also thankful for that! Hopefully, our next check up will be in 2 months (protocol through the first year) unless the radiation Dr. wants to see Ian sooner.

Ian did have a wonderful time at camp and we are so grateful he was able to attend with everything he's been through this year. The week before camp our entire family enjoyed a family reunion in New Mexico, another wonderful respite from our crazy year. (See photos above.)

David is very involved in our local American Cancer Society Relay for Life, which is coming up Sept. 18. One of the ways he raises money is by doing his own swim-a-thon. He did his swim yesterday and swam 7000 yards, which is 4 miles! He has nearly raised $2000! If you would like to put him over the top, please join him.

Ian will also have a significant role in this year's Relay. He is Honorary Chair and will be giving one of the opening speeches! And we will walk the survivor lap together, the thought of which brings tears to my eyes already.

My news is that I will have another MRI and see my surgeon Mon., Sept. 13. It would be wonderful if the MRI showed nothing growing after all, but I expect we will set a surgery date at that time. Meanwhile, I am feeling an almost desperate need to clear the clutter out of my life and have a lots of stuff set aside for a garage sale this Sat. There's so much to do to get ready, I'm not sure how I'll manage. But, whatever happens, I will get rid of a some of the clutter in my life. Yeah!

Please also keep my 22 month old nephew, Teo, in your prayers. (Teo and his Mommy and Daddy are with Ian and I in a photo above.) He is in the hospital with a nasty viral infection that caused such a bad fever he had a seizure. On top of that, my sister-in-law Pinar twisted her ankle badly before he got sick and they are in Turkey while my brother Melborne is back here in the US. It's so hard to be separated when needs and worries are so great!

Thank you all for keeping us in your hearts. You are a blessing to us! Love, Natalie