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.

Monday and a busy one for sure

My regular routine is to get up about 6am and have breakfast so I can be finished before 6:50am. I try to have a good breakfast because I will not be able to eat anything until 9:50am; 3 hours with no food, form of torture for me!!!  For breakfast I have my superjuice with all kinds of fruits, vegetables herbs and spices, also some oatmeal loaded with prunes. When I wake up earlier I try to go for a walk but today I had a hard time getting up, the good news, I am sleeping better, yeah!!!!! I am also feeling more tired, the result of both Chemo and radiation. Well I guess I am really radioactive now, so be careful.
Yesterday after radio I had my weekly visit with Dr. Facundes the highlight of my week at the hospital, he is so good looking!!! Then I had my first biweekly visit with Dr. Schultz, blood test and status of my treatment. So far all looks well, besides being tired and a little dizzy mostly when I get up I have not had any other side effects.

Yesterday I overslept so I could only have oatmeal but no juice, I was hungryyy, not good. Today was a better day.  But yesterday when I came home and my great yogini friend Monica was here for another great session of Tai Chi and relaxation. Followed by a walk to Companion bread, we really wanted to go to half and half but they have limited service on Mondays. We also went to the mall to visit the Apple store, in hindsight I should have stayed home since I had a doctors appointment and dinner out to celebrate my friend's Kety's birthday. So I was very tired this morning. It was fun to celebrate with my friends.

The irises are blooming and look gorgeous, all is green and the weather is getting warmer. We had a wet Monday but Tuesday is a lovely sunny day.

Have me in your thoughts.

Dr. Facundes and me with my short hair

Dinner at robust with my latin friends

Second Weekend

We keep on going. Had a nice weekend with family and friends. I have noticed I am tired but the good news is that I had a good nights' sleep last night and hope to do the same tonight. This past Saturday marked the first complete week for radio and chemo. Still feeling fine but a little dizzy.

My good friend Soledad had a stroke this past week and had surgery. She is recovering nicely but what are the chances of two good friends having brain surgery, we both had our heads opened up!! 

 Ale had a violin competition this Saturday, she did very well.

The weekend brought lots of rain and we spent time mostly at home. We had the visit from Kansas City of Marta Salinas and Peter. On Saturday night I felt energized by music and went dancing with my sister and my kids to Coco Loco in the Central West end. There we met Gaby, Eli, Pedro, Carmela, Ines, Maylin, Javier, Pepito Gonzalez. I had a wonderful time, looking forward to my next dance outing.

Sunday evening we had a wonderful Salmon Dinner prepared by Paty Dominguez, it was delicious!!

We celebrated Karen's birthday at The Crossing in Clayton, very nice.

Kela, Nicole, Frydel, Karen and Elliot

With my Sister Karen

This week brings more radiation, chemo and rehabilitation. This Wednesday arrive my good friend Alejandra from California and my sister Patty!! All the sisters will be here. 

Another week with new challenges!!! Have a wonderful week.

Family and Friends

This past Thursday marked the 1st week of radiation and this Saturday will be the 1st week for chemotherapy. I feel a little different but luckily the only side effect has been lack of sleep. I am now taking less pills, and feeling more energy. I am trying to walk daily a couple of times a day to build up my strength. It is getting better. I have my morning routine, during the week I have to eat breakfast before 6:50am, wait until 7:50am to take my chemo pills followed by radiation at 8:50am.Wait another hour and finally at 9:50am I can eat again. No more diet restrictions for the rest of the day. On the weekends I only take the chemo pills so everything is the same except no 8:50 radiation.

Contemplating the possibility of medical marihuana!! I am open to all options!

This past Thursday we had the arrival of Nicole from Indonesia, to stay at least for the summer, yeah!! Followed that evening by the arrival of my sister Karen and her son Luca from Paris, what a treat to have them all here. The house is filling up, like old times!!  Stephen arrived Friday night from LA and the next family member to arrive is my sister Patty. Only the boys are missing, waiting to see them soon.

We celebrated Karen's birthday Friday. I made some birthday Foccacia in her honor, happy to report she loved it. In the evening we had some delicious Lomo Saltado with Lentils and salad courtesy of Ines Schultz.

Friday brought rain and it is with us for the weekend, lots and lots of rain. This Saturday Ale has a violin competition in the morning followed by practice with the Suzuki Ensemble. A full morning for Ale!

Well looks like I am sleepy so I will go back to bed to get some much needed rest.  Good evening.

It's getting better everyday

I am back after a few days off my blog. I continue to recover and find that I can see myself improving.  It is like seeing a child learning except it is me doing it. I can now walk quite well and expect to be able to go for walks by myself soon, yeah!!!

The past few days I had visitors, from farther away came Seth, my brother in law, we had a lovely meal together at a new restaurant in Clayton, Crushed Red, interesting but the food seemed a little bland :(
My friend Alicia came by Monday, and today Eloisa was here.  Marian who is like part of the family comes by every chance she gets. She is leaving for a long weekend to NYC tomorrow, we will miss her.

I have asked help from my friends in order to go to my multiple visits. I have a daily radiation session Monday-Friday at Missouri Baptist. This past Monday Susan, my mother in love, was kind enough to drive me. I also have physical therapy sessions back at the Rehabilitation center 2 or 3 times a week, my friend Maria took me to the one on Monday. I am trying to give my mom a rest from all the driving!!

This past Sunday we had gorgeous weather and made it to the Zoo, one of my favorite spots in town!! We walked around, rode the train and visited the children's zoo. I miss going to the zoo now that my children are no longer interested :(  I will have to make excuses to enjoy it again.

On my physical recovery I was happy to learn I am progressing and will take a driving test next week!!!! Very exciting. I am also decreasing some of the drugs I have been taking to avoid swelling but that cause me insomnia.  Some nights I was only able to sleep a few hours and was wired due to the medication. I am not having much side effects from the meds, I am very pleased about that.

I continue with yoga sessions with my dear friend Monica who is an amazing teacher and friend. Today we had a session with my mom!!

Two more days and I will have Nicole, Karen and Luca here, I am very excited.

Well, it is getting late and I will attempt to go to bed early in order to get a good night sleep.

Until next time. Wishing all of you good health and peace.

Another First

 Lovely tulips from this early spring.

Today I started chemo. Two pills taken early in the morning. So far feeling fine. Had a nice day. The day started cool but warmed up nicely. Had visitors, Pepe, Camila and hubby; Maki and Minami

and Gigi, Mariana and Cinthya, also known as las pajaras. Sat outside in the sun, spring is in full swing.

In the early evening we celebrated passover at 41 Crestwood, as always a lovely event. Great company and food.
Tia Liz and kids are here to celebrate with us, yeah!!! They will be returning to Minneapolis tomorrow afternoon :(

Getting better everyday!!

Another Day

Today was a beautiful day in St. Louis!! The sun was out although it was a little chilly. We've had an early spring, lots of lovely blooms.
This is day 2 of radiation, it is very short, just 10 minutes. I feel a little dizzy during the day but so far so good!! Like a slight buzz.
Tomorrow I start chemotherapy and here it comes, another unknown.

So I guess I should start telling you how this Glioma happened to show up inside my brain, not that anybody knows ;). Apparently it is a very aggressive and fast growing brain tumor, the doctor told me I probably only had it for 2 months. Well sometime towards the end February I noticed I could not write, very strange!! This was followed by limping, balance problems and then I went to see my general doctor. He referred me to a neurologist, a peruvian, Dr. Benzaquen, he thought I had a balance issue but upon further testing decided I should get an MRI. On Friday March 2 I had the test and was asked to come to Dr. Benzaquen's office where I was told I had a mass inside my brain that needed to be removed quickly. I am not sure if it was the tumor effect but I was very calm. The following Monday I went to see Dr. Chicoine an amazing Neurosurgeon. My memory gets a little fuzzy after this, he did testing all day. My surgery was on Thursday March 8th, it took about 6 hrs, when I woke up I was in intensive care where I stayed for about 3 days. I was able to speak, however it seems not very coherently.When my vitals finally were normal I was sent to a regular room for a couple of days. I was not very mobile and as a result of the tumor have lost my short term memory and some mobility on the right side of my body. The tumor was located on the left side of my brain.

Well, that is all for today!!! Tomorrow we have family coming from Minneapolis for the weekend! We will be celebrating Passover and Easter. Should be a great weekend.

Thanks to all for your prayers, thoughts, blessings...

 Sunday Brunch at the Boathouse - St. Louis, MO

First Day of Radiation

I has been 4 weeks since I had brain surgery. My life had changed before surgery due to this extra growth inside my head but now I am in full recovery mode. Today was my first day of Radiotherapy but before I made it here I had to go through surgery, rehabilitation that is not all done, visits to multiple doctors and hospitals. I am very hopeful for a full recovery, it will take about 14 months and with the support, love, help and encouragement of all my family and friends I will make it, I know it!

I the last 4 weeks I have been to 3 hospitals. In St. Louis to BarnesJewish Hospital where I had my surgery. Also I consulted there with the oncology department. I followed with a visit to Missouri Baptist Hospital where I found the best option for my treatment. This in turn took me to Duke University where the brain tumor gods reside for a day visit 2 days ago.
Glad to report radiation was just laying down with my head secured for about 10 minutes for radiation.

I am feeling well, so far just a little dizzy. I will have radiation Mon-Fri at 8:50am St. Louis time for 6 weeks. Next will come chemo starting this Saturday that will vary at times but should last most of the 14 months.

I am in peace with cancer and am confident I will have it behind me in the future!!!
In the mean time thanks for all your support, encouragement, help, prayers, care, delicious food, visits, company....
I feel so loved and cared for it brings great joy to my heart and to my recovery.

Many thanks