Great Summer news

It has been a really long time since I last wrote, sorry for the long pause. I have been tired with treatments, visiting doctors but we are now getting into a routine. It goes like this every 2 weeks I get the Avastin infusion, had one this past Monday and every 28 days I start my chemo cycle of Temedor, 5 days of chemo 23 days off.  Theses are the times when I am tired and sleepy when I actually get my treatments, after I stop the effects lessen gradually.
I am very excited because this past Monday we were informed by Genentech the company that produces Avastin will not charge the hospital for the drug I need, we were very concerned as this was not covered by insurance and it is a big relief. Avastin is a very expensive drug and from the insurace world it should only be used when there is a recurrence of the GBM (Glioblastoma Multiforme). Lucky for me I have not had a recurrence which also meant no coverage!!!
I have had wonderful visits from my friends Monica, my super fantastic yogui, my good friend Alejandra who lives in California, it was wonderful to have her here and now my sister Karen and her son from Paris. In addition all my St. Louis friends always checking on me and helping when I cannot drive.
Nicole, my daughter went to Indonesia for 4 weeks and is now back to help me. Stephen who stayed here for 1 1/2 months is in LA, he will be back in mid August.  My mom Kela will be back in mid August.
In the past few months I have recovered nicely, I now have permission from the doctor to start driving again, I will take this slowly for sure.  I have been very lucky since I had no seizures.
Finally the basement was cleaned by Nicole and Elliot and will be making a nice play/family room there. It is completely gutted so we will start from the very beginning.
Ally our youngest daughter is at camp for a few more days. She has been wonderful, all her cabin mates wrote me letters and it was very sweet and inspiring.
Next week we will be going to Duke for the 2 month check up. I will have my MRI here in St. Louis Monday before I leave for Duke Tuesday. My recovery is amazing!!!
This past weekend Elliot and I went to Chicago and had a wonderful time, such a great city. We also met there our St. Louis friends Eli, Pedro, Claudia that came with my sister Karen and Luca, other friends were my yogui Monica and family and Monica and Fernando and family joined us too, a good time was had by all.
I have more good new to come and continue my recovery.
Thank each one of you for all your support and prayers. You all make a great difference in my life and recovery.
Love
Frydel

I am back after a long break. No news is good news and it is certainly the case with me. After I finished with radiation and chemotherapy my results have been excellent. We went for my check up at Duke and the nurse could not believe the scan she was looking at was from the same person!!! After part 1 of my treatment I had a 3 week break from all treatment except Avastin, I get a dose every 2 weeks. On June 12th I started again with chemotherapy, more that doubling the Temidor dose I was receiving with radiation. I will be taking chemo pills for 5 days and resting 23 days, so I am on a 28 day program. This will last for 12 months more or less, then I will be done if it all remains clean.

Today I spoke with JJ, a woman from Boston who had Glioblastoma Multiforme Grade 4 like me 9 years ago. She is doing great and has been well for several years after her treatment stopped. She could not be operated due to the location of her tumor. She was very impressed with my progress.

My children are all here, it is wonderful to have all 3 of them here. Stephen is working remotely with his office in LA, Nicole is here for the summer but leaving for Indonesia this Sunday, she will be there 4 weeks. Alejandra is 14 so she has a few more years with us. She is going to Birchwood camp in July for 4 weeks. We are all getting ready to go to Minnesota for the weekend and from there Ale, Elliot, his parents and me will be going to Beaver Creek for a week of violin camp for Ale. Looking forward to being in the mountains.

Keep me in your thoughts and prayers. Thanks for all your support.

Doing Great!!!!!

Radiation preparation

Radiation

At the buddist Temple in Augusta, MO with Moni Yogui

It has been two weeks since my last post, a lot going on, all good.  I am feeling stronger everyday, my sister Patty and my mom are here. My daughter Nicole is a wonderful help. Ale is getting ready to be promoted from 8th grade, she will be in high school next year, not only that she is also taller than me!!
Avastin has worked very well for me, I believe it has helped my recovery, yeah!!  I am almost done with radiation, only 3 more days, and will be done with chemo by next weekend. Looking forward to the break! I will be getting a makeover tomorrow courtesy of the cancer program, I will make sure to get some pictures.

Vietnamese Food with Ana Banana

The weekend before this one we had the visit of our lovely Ana from San Diego/Ecuador. We had a wonderful time with her. She gave me a great french manicure, we did yoga in Tower Grove Park, went to the Farmers Market. Went to her favorite Vietnamese restaurant in St. Louis, I could take you there but I cannot remember the name.

My good friend Lucia will be arriving tomorrow in St. Louis with her daughter Claudia, very cool. I am looking forward to visiting with them.  I will have a very busy day tomorrow; starting with radiation, visit to the radiologist, blood test, makeover, Avastin infusion in the afternoon and going to a Card-Cubs game in the afternoon with friends from Chicago. I should be nice and tired by the evening.

I am also looking forward to my son Stephens' visit. He will be working remotely from St. Louis for 2 months!! Sad to see my sister Patty and my mom leave. My sister Patty leaves on Tuesday back to Palm Bay, she may come back, and my mom leaves on Friday for about a month to Peru!!

Look mom no hair!!

Also, as a result of my treatments I was loosing quite a bit of hair so I had my head shaven, it felt great, I was tired of my hair falling all over the place but now my head is two colors, like jing and jang. It looks like some of my hair is now blonde or very light. Well it will be interesting.

Crown Candy

Continue to do yoga everyday with Monica, we have started going out to different locations outside, this past week we did yoga under the Arch followed by lunch at Crown Candy, a first for Moni Yogui and my sister Patty. We had a great time.

With Ale and Nicole

All the girls at Laumier Sculpture Park

Today we spent part of Mother's Day at Laumier Sculpture Park. They have an art fair every year on Mother's day weekend but this year they offered brunch provided by Whole Foods, it was delicious and the art fair was very neat. Was a wonderful way to spend the day. Ale is getting ready for her promotion so we bought her some really neat shoes. I have a lot coming up but will try to keep updating my blog regularly.

Thanks for all your support.

Lovely letter from my daughter Alejandra and Avastin Time

This is the fourth week of my treatment. I am now officially tired. I started today to get Avastin infusions and it is a great drug to fight Glioblastoma, my type of tumor. It is an infusion that takes about 30 minutes. So far all my results look very good, all my blood count are great.

My first infusion of Avastin 4/30/12

I miss my sister Karen, she was here for two short weeks :(  I am excited about the upcoming visit of Ana from San Diego, she will be arriving this Wednesday!!! 

This part is from Ally, my daughter:

Hey everybody! It's Ally.  But you already know that. Oh well. I didn't know what else to write.  Anyway, I want everybody reading this to know that my mom is doing totally AWESOMELY.  yeah.  I love her new haircut.  It's so pretty!!!!!  She is looking gorgeous, as always.  But, I did have a purpose for writing this on my mom's blog.  As you all know, my family and I are going through an especially hard time right now.  So, I have found several ways to cope, including talking it out with my incredibly nice teacher who has also gone through this two times! She is so amazing.  Everybody going through this should have somebody like her.  Another way I have found to cope is by writing about my mom.  If any of you are friends with me on facebook, you might have seen the letters that I write to my mom.  I also like to write letters that nobody sees when I am in literacy class and we have free write time.  I also wrote something about my mom for an assignment in literacy.  Right now in literacy, we are reading a book called The Miracle Worker.  It is about Helen Keller and her amazing teacher, Anne Sullivan.  We had an assignment to write about what we would do if we knew that we only had one day to see.  This is what I wrote, and it is also what I am giving my mom for Mother's Day!  So, if you are reading this Mom, here is your mother's day present a few days early!

 

Three Days to See

    If I knew that I only had one day to see, then I would want to spend it with my mother and my family.  Although this may seem like a typical response to a question like this, the reasoning I have for it may be more uncommon.  
    I don’t know how long I have to spend with my family all together.  I don’t know how much time I have left with just my mother.  My family is more precious to me than anything else in the world.  To see their faces every day brings joy to mine, no matter what state I had been before seeing them.  They are able to lift the greatest sorrows out of me and replace them with sheer joy, even during the darkest times.  
    My mother has been the best mother that I could have ever asked for to me.  To know that she may collapse at any given time of the day kills me, and I want to spend every waking minute with her.  Without her, I am missing a part of myself, a part of myself that is irreplaceable.  Seeing her beautiful face every day gives me joy, and if I knew that I would never be able to see again, then I wouldn’t be able to live again.

If I had only one day to see my mother again, I would spend the whole time studying every detail of her face, trying to remember every wrinkle, every crevice.  Every oddity that is on her face, because I love everything there.  That way, maybe, just maybe when I have lost the ability to see, I will be able to picture her face in my dreams.  My mother is my angel, my idol, the mother I could only have dreamed of.  To simply think of only being able to see her in my dreams, having no vision of her, would kill me.  I would die inside.  My precious one day to see would be spent with her. 

******

This is me again Frydel, Ally or Ale as I call you I am so touched by your gift to me, I could not ask for anything more beautiful! Thanks Ally

This past weekend I was tired but found the energy to go the Marta's 50th birthday party and enjoyed time with many of my friend that are so happy with my results. I have received so many great messages in Facebook, thank you all!!

Cancer Free!!!!!!

Great news, I had an MRI today and I am cancer free. It is truly amazing, I could not have done it without the support of my family and friends, you are the best.

Because I am cancer free I will have a harder time getting Avastin :( but we will continue trying! My treatment will continue for 12 more months. I have been drinking guayaba leaf tea that works wonders with cancer, I started a few days ago.

Today I was very tired, probably as a result of the MRI, chemo and radiation. I have started to loose hair, but it is only in a small area and is hardly noticeable. 

Today was a little sad because my sister Karen and her son Luca left for Paris. The good news is that they will return in July.

Just a quick report today with the good news.

Love you all!!

Long break, much has happened.

Wednesday Night Yoga with Karen, Luca, Raquel, Monica, Frydel, Nicole and Patty

Since my last post I have lots of news to report. For starters I am feeling much better. On Wednesday I finished or graduated from physical therapy. The following day I had Occupational therapy and discovered that for some reason I have not had any Speech therapy scheduled? They are looking into that. I am tired as a result of the chemo and radiation but with enough energy to walk in the mornings. I have joined a gym and today did 30 min of ellyptical. On Wednesday my sister Patty arrived from Florida and my good friend Alejandra Clinkscales came from LA.

Alejandra, me and Patty

Ale, my daughter was just stressed and is feeling better now, what a relief!
We had nice day with yoga with Yogi supreme Monica in the park on Thursday and a great lunch at Half and Half, my friend Alejandra joined us. On Friday we had a rainy day so no yoga in the park :(
but we went again to Half and Half for another great lunch. The evening took us to the Grove in St. Louis a really cool area. We went to meet some friends to listen to a band but it was too loud so we ended up at Sanctuaria a nice latin restaurant with a great cuban bread dessert and delicious empanadas and papa rellena!! Wanted to go dancing but it was not meant to happen.

At Sanctuaria with Dennis and Ines, Raquel, me, Alejandra and Elliot

Saturday morning we said goodbye to Alejandra that promised to come back!!! It was a sunny cool day, felt like fall. The weather has been very strange. It was a quite day with a great lasagna in the evening made by my sister Karen, I made quinoa bread loved by all.  We also looked at cars all afternoon with my mom and Elliot, we might end up getting the Escape! Still researching.

Sunday was an interesting day with a big surprise. We went for an hour walk early followed by a visit to the gym. Next we went to visit a buddist temple, very interesting, considering following it. Next a delicious brunch at the Uchitelle's we all enjoyed. In the afternoon we made the discovery that Nicole had lice, not good!! We discovered most of the family had lice, not fun, spent most of the rest of the day treating all affected.

Ale and me

My hubby and I

Patty, Karen and Luca

Great Brunch

All the girls

Luca playing the piano at the Uchitelle's

The Schoemaker sister and mom

Overall I will have to say it was a great week, even with a few challenges.
Hope to keep writing on a regular basis.

Have a great week!!!

The bus home!!!

Another day of radiation. I was told I could take a collagen supplement for my nails that are very weak, hope to pick some up today. Today I felt a little dizzier, but no other side effects :)  Good news for me! Had another busy day; Yoga with Moni, a visit from my friend Dominique and a rehab session in the afternoon. I was able to ride the bus back from therapy, but had to go with mom. I have taken the dog for walks alone but I guess the dog was with me!!! Also, today I went to the public library and got a variety of books about cancer, I have to keep learning about my current companion, but it will not be with me for long!!!  The weather is getting warmer and we had a beautiful day today. Sunny with a slight chill.
Tomorrow we have two arrivals, first my friend Alejandra from Chile who now lives in sunny California and later in the afternoon my big sister Patty from sunny Florida. Does it mean we will have lots of sun?? We have had quite a bit of rain the last few days.

Now Ale who was complaining of pain is having stronger pain and I have a call into the doctor for advise. We may have to go to the emergency room but I am not sure. We are waitng to hear. Never a dull moment.
Did some good walking today,  I renewed our family membership at the Center a few blocks from home, it will be good for the whole family. Get in shape, stay in shape.