Update in Russian

May 10th, 2011

http://ekaterinagarcia.livejournal.com/

Sunday Update: 5/8/2011 - Happy Mother's Day!

May 8th, 2011

May 8, 2011

Dear friends,

Finally, it is the spring time in Southern California.  You may think it’s always nice and warm here by the Pacific Ocean but surprisingly the past winter has been quite unpleasant.  Lots of rains, winds, chilly morning and nights, and very few sunny days.  To some extent, the weather matched our life perfectly.

Since August 2010, our life has not been the same.  Mom’s cancer diagnosis changed everything and complicated life in every aspect.  The fear of the unknown, never-ending excruciating treatment, hospitals, bureaucracies, medical bills that keep on arriving, depression, daily fight for the right to be treated, for the right to live.  Dealing with cancer is very difficult. Being a caregiver for a cancer patient is very difficult.  Dealing with the hospital and the government system is simply devastating.  Every time mom has a medical test or a doctor’s appointment, we receive a bill.  We have piles of unpaid bills, some of them are overdue, some of them are long overdue, for some of them we have been reported to a collection agency.  There is simply too much to pay at once and I just don’t make enough money to cover all the bills.  We still have to pay the rent and the utilities, to buy food, and to pay for the car that we take to the appointments…

Our hope to get a deal from Cedars Sinai based on mom’s misdiagnosis and wrong treatment for five month has collapsed.  The hospital did not confirm any special discount; they also did not agree to reimburse us for the wrong treatment and they reinstated the pending charges on unpaid bills.  We also found out last week that mom’s application for the social insurance was denied as well.  So we are back to the situation we were a few month ago as far as finances. The most difficult fact to accept is that we don’t know for how long mom’s treatment needs to be continued. She definitely will need special chemo-therapy for a long time and being able to pay for it in a long-term is key to being able to extend her life.

Sometimes I feel hopeless about my abilities to do anything…I feel hopeless because I cannot negotiate any special rate or a program for mom and all I get is multiple denials of our applications for financial assistance.  The reasons are the same:  her pre-existing condition, mom does not have a social security number, the hospital does not want to accept the fact that they did something wrong by treating her for ovarian cancer on an unverified by biopsy diagnosis…The stress and financial burden never goes away.

On the other hand, a few weeks since the last update were filled with good things too.  First of all, the results of the most recent CT-scan showed that mom’s disease stopped progressing and there are some positive changes, the tumors shrank in size and it seems like mom is responding well to her new medication.  Because she feels stronger we were able to do more things together.  On May 1, we attended the Phi Kappa Phi dinner at my university where I was inducted to the national academic honor society.  Mom enjoyed it more than I did as she was able to be among so many people and feel the energy of life.  We went to San Diego Wild Animal Park, and the town of Solvang near Santa Barbara, where I worked in a Danish bakery a few years ago as a part of Work & Travel USA program, while I was attending my university in Moscow.  We took our time to enjoy the J. Paul Getty Villa and spent the whole day there recently.  And we have been enjoying warmer days.

There are no enough words to express our gratitude for your positive energy, your encouragement, and generosity and your interest in our life.  Our tragedy and our fight touched so many hearts and their love and sincere desire to help is what was giving us strength for the past several months.  This page, unfortunately, needs to be closed. It was visited over 4050 times since the time it was created.  In order for us to be able to use the money we have to close the page.  We are working with the administration of the GiveForward site on opening another page and I will post an update once we create a new web-page for mom.  The money that we fundraised so far will be used to continue mom’s cancer treatment at Cedars-Sinai Oncology Center.

On May 16 mom is scheduled for her 5^th colon cancer treatment and it will be her 11^th chemo therapy since September 2010.

It’s Mother’s Day in the US today. For me, it is especially precious time.  Cherish your mothers, make your memories, and enjoy your time together.  There is no other person in the world who cares and loves you more than your mom.

With Love,

Katya

Sunday Update: April 3, 2011

April 4th, 2011

Dear friends,

I failed to count how many times we have been with mom at the hospital for the past six and a half months. It takes us anywhere from one to two hours to get there, depending on traffic. We take the 405 freeway North to Exit 47, Manchester Boulevard, then we go straight on La Cienega street until San Vicente Drive. We make a left turn and then left again on Beverly Boulevard. The parking lot is right across from Jerry’s Deli. Parking is two dollars with validation.

We park and I take a wheelchair out of the trunk and open the door for mom. She is too weak to walk even a few meters. She has just enough energy to move from the car straight to the wheel chair. I secure her with a seatbelt, lock the car and push the wheelchair with mom to the Samuel Oschin Outpatient Cancer Center across the parking lot. On the first floor I get the parking ticket validated. Mom usually uses the bathroom here too. Then we get to the elevator and go two floors down, to the basement. The cancer center is in the basement of the Cedars-Sinai North Tower. It’s a state of the art facility with modern technology. When it gets down to results, it’s all about people. It’s about their knowledge, their skills, and their commitments. Some are committed to cure. Some are committed to getting the paycheck. It’s just like everywhere else.

We get out of the elevator and go to the reception desk. We check in. They ask for mom’s name and date of birth and sometimes they ask if the address has changed. They put a wrist band on mom’s arm, with her name and a date of birth. I push the chair to the lab, where they draw blood before the doctors’ visit. Then we patiently wait in the waiting room until the nurse calls mom by name.

I have seen endless amount of cancer patients over the past six and a half months. Among the people in the waiting room, I recognize a few of them. Here is an African-American lady waiting for the lab. She comes here with a woman in her mid twenties, probably her daughter or maybe a granddaughter. It’s hard to tell. Here is a very young guy. But I can’t see his face. He always wears a mask that covers most of it. He never sits straight. He is too sick. He usually comes here with a young girl, maybe his sister or a girl-friend. This gentleman is a volunteer here. His wife died of cancer in 2008. I see more people that I recognize. It’s probably because their treatment schedule is similar to ours…This lady in a wheelchair looks particularly sick. The skin on her face is pigmented. She is extremely skinny and her eyes are lifeless. She still lives and I see her every three weeks here. Some people I see are bald; they lost all their hair to chemo. There are all kinds of people: young and old, skinny and overweight, all kinds of ethnicities, I see small children too. Cancer is everywhere around me. I am not sick. My mom is. And I feel how cancer is inside me too trying to break and destroy me and feed on my energy. Cancer is not just illness. It is a life changing experience that takes a huge toll on the patient and people who love and care for them. To say that we fight every day is to say nothing. It is too weak of a statement. It’s almost meaningless. We LIVE every day…with cancer. The fight is just a small portion of this new life.

The nurse escorts us to the exam area. She checks mom’s weight and vital signs: blood pressure, pulse, temperature and takes us to a small room where the doctor meets with us. The room is ridiculously small: there is hardly enough space for three people. But we don’t spend much time here. The doctor checks the results of the tests and if they look acceptable to administrate the treatment he writes a request to the pharmacy and the infusion center.

The doctor is old. We had a young one before. It did not work out. This new doctor is old and that is good. He is not here to make a name, or satisfy his ambitions. He has been here for a long time and he is here now to treat people. I like this state of things. That is how it is supposed to be. Unfortunately, medicine is business and some people become doctors for the wrong reasons. This one, I’m sure, chose to be an oncologist for the right reason. I want to believe in that.

After we meet with the doctor, we go to the scheduling office where I schedule an appointment and treatment for the next visit, in three weeks. I also schedule an appointment for the next day for mom to receive an anti-nausea medication, for the day after the next day for mom to get disconnected from the portable chemo pump, and for the day three days after for mom to get an injection of a white-blood cell boosting medication.

There is usually a three hour gap between the doctor’s appointment and chemo. We go to the lobby in the South Tower and listen to the piano. I check my work emails and read something for work or school. I then go to the cafeteria and get mom some soup and some salad for me. The time goes by quickly. Mom was able to walk to the bathroom on her own this Thursday while we were sitting in the lobby. She stopped by the store on the way back and bought a sneakers bar.

By 1 pm, we go back to the North Tower to the infusion center. We check in again at the reception this time for the chemo appointment and wait again. Finally, they call us in and we spend the next six hours in the infusion center. Mom receives chemo and I sit next to her in a chair.

After six hours of treatment, they connect a portable pump with more chemo for her and we go home. For the next 46 hours mom’s ability to move is restricted even more. She hardly eats anything. She forces herself to drink so she does not dehydrate.

For four days I drive her to the hospital every day. Regardless of traffic, weather, on Saturday night when La Cienega is packed with cars, and on Sunday night, and don’t forget Friday morning. I take time off work for that. I have already used all my available sick time taking care of my mom. And I’m usually not getting paid for this time under FMLA. But FMLA preserves my job, and I’m thankful for that.

Tonight, I helped mom to take a shower and changed the colostomy pouch, the bandage on the nephrostomy, and the bandage on the scar. Then I cooked food for the week. I made borsch, cabbage salad, mashed potatoes, and a meatloaf. I prepared fruits so I could make fresh juice in the morning. Nutrition is important, nutrition is critical.

I did laundry, washed the floor, cleaned and disinfected the bathroom, vacuumed, organized the to-do list for tomorrow and set my alarm for 5 am. It’s Monday tomorrow. I need to go to work. I am writing the update now and then I’ll go to bed. …Ah, I forgot. I ran 5K Seal Beach Run on Saturday morning too. It was in support of cardio health. In previous years it used to be in support of cancer research, but not this year. My dad died of a heart attack, so I ran for cardio health too…

I don’t remember how many times we have been to the hospital for the past six and a half months. Last week we have been there four times. I am tired. Mom is still very sick. We live our life with cancer. And we fight it too. Not just once. But every day, every hour, every moment.

With love, Katya

P.S. this page was visited 3622 times as of today

Sunday Update: 3/27/2011

March 28th, 2011

Dear Friends,

It has been a while since the time of my last update. Let me tell you one thing, it has been a very busy time for mom and ultimately for me. The new chemotherapy regiment is extremely intense. Even thought it was modified to be administrated every three weeks instead of every two weeks, it is still very difficult for mom to handle. To receive one round of treatment we have to drive to hospital every day for four or five days. A portion of the chemo is administrated at the hospital for 5 hours, after that mom is connected to a special portable pump that continues infusing medication to her blood stream for another 48 hours. Every day, we drive to a hospital to receive medication that helps with side-effects, to disconnect the pump, and receive an infusion to increase white blood cell count. Last week we had to go to the hospital again because mom developed an allergic skin reaction that caused extreme discomfort in the stoma area (where a tube enters her abdomen). The meeting with the surgeon lasted for almost two hours. Next week mom is scheduled for another round of treatment. That means that starting Thursday we’ll be driving to Cedars-Sinai every day for at least four days…

We try to enjoy life when mom’s health permits too. Just recently we hosted the daughter of my cousin who visited California from Moscow with a group of her classmates. It was great to see a relative from home here in LA and it definitely made mom happy to be able to spend a few hours speaking Russian! Galina also brought some Russian sweets that made us happy.

The weather has not been as sweet as the Russian candies though. It has been awfully cold here with rains and heavy winds. Such weather does not allow us to enjoy a walk along the ocean so we substitute that with a cup of hot chocolate and looking at the rain through the window.

I would like to thank all of you once again for your support, thoughts, and prayers. Please have a good week and enjoy your life. It’s precious and fragile.

Love,

Kate

Monday update: 3/7/2011

March 8th, 2011

3-7-2011

Dear friends,

I am really confused about the calendar. In Russia we always considered March 1^st as the first day of spring. However, here in the United States, spring begins on March 21, summer on June 21, then we have the beginning of fall on September 21, and finally winter starts on December 21. That’s very confusing, especially when all your life you thought that the beginning of spring is on March 1st! Anyway, HAPPY BEGINNING OF SPRING to all of you!

Our first week of spring was great actually. Mom’s chemo was postponed for a week so she had an extra week to gain some strength after the previous treatment. She felt good for her condition – she had more strength, was able to cook something and enjoyed feeling a little bit closer to “normal” condition. When mom feels stronger and better – I feel absolutely happy! We don’t know what the future will bring but I am definitely thankful for this week!  Please keep on sending to us your positive thoughts and energy! It might even be the best remedy for mom’s condition!

Mom’s next treatment is scheduled for Thursday, March 10…

With Love,

Kate

Sunday Update: Oscar Sunday in LA

February 28th, 2011

2-27-2011 Dear friends, It is Oscar week in Los Angeles. And besides the fact that it was snowing in some parts of Southern California yesterday and it was cold like never before everywhere else, today was a beautiful and sunny day. We had a lazy Sunday as I call it. We haven’t done anything today other than waking up and watching the TV all day. No thoughts, no fears, no optimism, no desperation…a very neutral quietness for a change. I am just sitting here and being quietly happy that we have a moment of quietness and we don’t have to rush to an emergency room, or an infusion center, or call the doctor because we need a prescription to manage newly developed side effects. My cousin Yelena from Moscow sent an email to mom a few days ago where she wrote that they wait for the news from mom and me like people wait for the news from the war: what part of the territory (body) is saved from cancer, and for what part the fight is going on now. This made mom laugh :) I am so happy when mom stabilizes at least for a day or two. That is when she and I can get a short break and breathe the air. I never know how long this moment of stability will last. Will it be one day or two days, or the whole week? Everything can change in a second and we could be driving to the hospital at any time… The war never ends but it sometimes has breaks to see that life is not just chemo drugs, worried doctors, and hospital beds, but has other things to look at and think about… Mom was released from the Infusion center on Monday morning (2/21) after a night of hydration. Now she drinks about 4 liters of water a day on average. It’s hard to imagine but it’s absolutely necessary in her condition otherwise she would be at the hospital all the time getting hydration through the port installed in her chest. On Thursday (2/24) we had an appointment with Dr. Engelberg. Mom was so weak after the Folfiri treatment that she received the week before, that he decided to change her treatment scheduled from once every two weeks to once every three weeks and reduce the dosage of the chemo drugs by 10%. This is not very good news. The Folfiri regiment shows good results at the standard schedule when the patient receives the treatment every two weeks. However, because mom’s body was so deteriorated by the previous chemo, it takes her much longer to recover and the doctor now has to modify the treatment. Tomorrow in the morning (2/28) we have a follow-up appointment with mom’s surgeon who installed the chemo port a few weeks ago. In addition to the chemo port, a nephrostomy tube, and a colostomy, mom still has her unhealed scars from the surgery in August. The middle of the scar is wide open and you can see the stitches showing up from it. This is pretty scary and we are going to ask the doctor to do something about it. Part of the problem is that the chemo suppresses the immune system and the wounds cannot heal. However, if mom feels better we might ask the doctor to administrate the treatment this week (3/3) instead of waiting another week. Again, we play it by year or by minute in our case… After taking mom to the doctor’s appointment in the morning, I’ll be going to work and then to my evening Master’s class at the university. In between the work and the beginning of the class (it starts at 7 pm), I need to stop by the Administration Office and file my request for graduation. I am taking my last two classes this semester. I’ll need to work on the final project before I graduate in Winter 2011 hopefully, but I need to file for graduation now. Even though I’m planning on graduating in December2011, there is only one graduation ceremony a year held in May. In my case, I’ll have to attend May 2012 ceremony…My goal is to have my mom sitting in the audience while the Dean of the University is handing me my Master’s of Public Administration Diploma like it once happened when I received my Diploma from Lomonosov Moscow State University in June 2007. It’s only a year and three months away… The Oscar nominations party is on, the movie stars are freezing in their gorgeous dresses enjoying the moment of concentrated fame and glory at the Kodak Theater just an hour of drive away from our apartment in Redondo Beach. The City of Angeles is defined by these shows, its glam and its opportunities, snowy-white smiles and sky high brands…In reality this city is just like every other city. The red carpet ceremony in Hollywood does not show homeless who wander around just a few blocks from it; the skinny beauties on the carpet would never tell you what they have gone though to be where they are. Everyone in this City of Angeles is fighting for their spot under this not-so-hot winter Sun and everyone hopes their dreams will turn into a beautiful red carpet story. My dream in this city is to keep my mom’s heart beating and her eyes enjoying the world around … And what’s your dream? With Love, Ekaterina

Sunday Update: 2/27/2011 - Oscar Sunday in LA

February 27th, 2011

Russkaya versiya (Russian version) at: http://ekaterinagarcia.livejournal.com/1716.html

Sunday Update: 2/27/2011 - Oscar Sunday in LA

February 27th, 2011

2-27-2011

Dear friends,

It is Oscar week in Los Angeles. And besides the fact that it was snowing in some parts of Southern California yesterday and it was cold like never before everywhere else, today was a beautiful and sunny day. We had a lazy Sunday as I call it. We haven’t done anything today other than waking up and watching the TV all day. No thoughts, no fears, no optimism, no desperation…a very neutral quietness for a change. I am just sitting here and being quietly happy that we have a moment of quietness and we don’t have to rush to an emergency room, or an infusion center, or call the doctor because we need a prescription to manage newly developed side effects.

My cousin Yelena from Moscow sent an email to mom a few days ago where she wrote that they wait for the news from mom and me like people wait for the news from the war: what part of the territory (body) is saved from cancer, and for what part the fight is going on now. This made mom laugh :) I am so happy when mom stabilizes at least for a day or two. That is when she and I can get a short break and breathe the air. I never know how long this moment of stability will last. Will it be one day or two days, or the whole week? Everything can change in a second and we could be driving to the hospital at any time… The war never ends but it sometimes has breaks to see that life is not just chemo drugs, worried doctors, and hospital beds, but has other things to look at and think about…

Mom was released from the Infusion center on Monday morning (2/21) after a night of hydration. Now she drinks about 4 liters of water a day on average. It’s hard to imagine but it’s absolutely necessary in her condition otherwise she would be at the hospital all the time getting hydration through the port installed in her chest. On Thursday (2/24) we had an appointment with Dr. Engelberg. Mom was so weak after the Folfiri treatment that she received the week before, that he decided to change her treatment scheduled from once every two weeks to once every three weeks and reduce the dosage of the chemo drugs by 10%. This is not very good news. The Folfiri regiment shows good results at the standard schedule when the patient receives the treatment every two weeks. However, because mom’s body was so deteriorated by the previous chemo, it takes her much longer to recover and the doctor now has to modify the treatment.

Tomorrow in the morning (2/28) we have a follow-up appointment with mom’s surgeon who installed the chemo port a few weeks ago. In addition to the chemo port, a nephrostomy tube, and a colostomy, mom still has her unhealed scars from the surgery in August. The middle of the scar is wide open and you can see the stitches showing up from it. This is pretty scary and we are going to ask the doctor to do something about it. Part of the problem is that the chemo suppresses the immune system and the wounds cannot heal. However, if mom feels better we might ask the doctor to administrate the treatment this week (3/3) instead of waiting another week. Again, we play it by year or by minute in our case…

After taking mom to the doctor’s appointment in the morning, I’ll be going to work and then to my evening Master’s class at the university. In between the work and the beginning of the class (it starts at 7 pm), I need to stop by the Administration Office and file my request for graduation. I am taking my last two classes this semester. I’ll need to work on the final project before I graduate in Winter 2011 hopefully, but I need to file for graduation now.  Even though I’m planning on graduating in December2011, there is only one graduation ceremony a year held in May. In my case, I’ll have to attend May 2012 ceremony…My goal is to have my mom sitting in the audience while the Dean of the University is handing me my Master’s of Public Administration Diploma like it once happened when I received my Diploma from Lomonosov Moscow State University in June 2007.  It’s only a year and three months away…

The Oscar nominations party is on, the movie stars are freezing in their gorgeous dresses enjoying the moment of concentrated fame and glory at the Kodak Theater just an hour of drive away from our apartment in Redondo Beach.  The City of Angeles is defined by these shows, its glam and its opportunities, snowy-white smiles and sky high brands…In reality this city is just like every other city. The red carpet ceremony in Hollywood does not show homeless who wander around just a few blocks from it; the skinny beauties on the carpet would never tell you what they have gone though to be where they are. Everyone in this City of Angeles is fighting for their spot under this not-so-hot winter Sun and everyone hopes their dreams will turn into a beautiful red carpet story.

My dream in this city is to keep my mom’s heart beating and her eyes enjoying the world around …

And what’s your dream?

With Love,

Ekaterina

February 21st, 2011

Russkaya versiya obnovleniya (Russian Version) at:
http://ekaterinagarcia.livejournal.com/1534.html

Sunday Update: 2/20/2011 - From the Hospital

February 21st, 2011

Sunday, February 20, 2011

Dear friends,

Thank you for your continuous support of our medical fundraising efforts! You have been a true inspiration to us. The page has been visited almost 3,000 times, which means you are interested in our battle and I will make sure to provide you with the most recent updates.

It’s almost the end of February and today marks one month since we discovered the truth about the misdiagnosis.  Mom was able to start her new chemo regiment finally this week.  Her body was deteriorated by the previous chemo but with time, good nutrition, her strong positive attitude, and some boosting medications, her blood cell count reached an acceptable level.  We had an appointment with Dr. Engelberg on Thursday (2/17/11) and based on the most recent blood test results he determined that it was medically safe to administrate the treatment. What “medically safe” means is that she can receive the treatment but of course nobody knows how exactly her body will react or how soon her blood cell count will decrease again. Mom had to go to Cedars-Sinai 6 times this week, on Monday and Wednesday to receive the injection of a white-cell boosting medication, on Thursday for the doctor and chemo appointment.  Then she was connected to a portable pump that was pumping chemo into her for another 46 hours at home. She had to go back to the hospital on Friday to receive a special anti-nausea medication, then on Saturday night to disconnect her from the portable pump. Finally, tonight we’ll go there again to receive an injection on Neulasta.  Her doctor is being very careful about her treatment and wants to see her next week on Thursday (2/24/11) to make sure she is reacting properly to the new meds.  Staying at the in-patient facility would cost around $100,000 for 7 days, so I don’t mind driving even in the scary LA rains.

Mom is feeling somewhat fine if I may say. The side effects of the chemo will kick in a little bit, probably by the end of today.  And that part of the cancer treatment is the scariest and excruciating to see…I’m afraid to even imagine how the body feels. Mom describes the withdrawals from the chemo as the “decomposition” of her body into separate atoms where she can feel each separate atom being burned by the chemo drugs.  She experiences pain in her bones and muscles similar to what a flu patient would experience but 100 times more severe and it can continue for several weeks.  The fatigue is beyond imagination.  She literally cannot do anything other than stay in bed for days.  Eating and drinking becomes a duty, while drinking lots of water is crucial as the body needs it to filter the chemo and toxins from the dying cancer cells.  Neulasta will increase mom’s white-blood cell count (because chemo kills healthy cells too), but it will extract them from the bone marrow and the pain in her bones will increase…Over and over again I was thinking about trying alternative medication because this conventional cancer treatment is so unbearable for the human body.  I am researching alternative cancer centers here in the Unites States and other close-by countries (Mexico and Canada).  If mom responds well to the current chemo, I think we’ll have to take a two week break from ANY cancer treatment and try nutrition-only based healing for detoxifying and immune system strengthening purposes.

On another note, I’d like to share with you the fact that it has been exactly 3 years today since I came to the United States back in 2008.  It happened right in the beginning of the economic recession so it was doubly difficult to get situated here, find a job, and try to build life.  Back then I thought I was doing it to provide mom with a nice beachfront retirement on the Pacific Ocean where she could spend years and years enjoying the sunsets and freshly squeezed orange juice.  The cancer diagnosis in August 2010 completely changed those plans and my personality.  I don’t make long-term plans anymore.  I just fight every day for what’s necessary today.  I make sure to keep my job and to continue my Master’s degree program so I can pay the rent, mom’s treatment, and the bills, and develop my career.  And I fight for my mom’s life because there is nothing else I need more.  That’s it:  work and fight cancer.  I hear from many people that I need to enjoy life more and make sure I have good time with mom while I can.  I don’t like the “while I can” approach.  I am confident in my heart that mom will survive this and has many years of happiness and joy ahead of her.  I don’t accept sad looks telling me that her days are counted.  And I know that she is not dying. She is very sick but together we will go through this darkness and mom will live.  She has so many reasons to live.  And she will.

With Love,

Kate

P.S. I prepared this update earlier in the day. We went to Cedars-Sinai at 6 pm to get an injection on Neulasta tonight but found out that mom is severely dehydrated (her blood pressure was 80 over 60 with 120 pulse and she lost over 5 lb in 3 days!). They could not let us go home and prescribed an in-patient intravenous hydration over night. Other side effects also developed and mom does not feel good. So mom and I are spending this night at the hospital. I hope mom feels better by the morning and we’ll be able to go home. Good night everyone from Cedars-Sinai Cancer Center. The battle must go on.

Sunday Update: 2/13/2011

February 13th, 2011

Russkaya versiya (Russian version) at: http://ekaterinagarcia.livejournal.com/1233.html

Dear Friends,

I’d like to start this week’s update with expressing my mom’s and my deepest gratitude to your support that you have been showing to us all this time. Honestly, when I started this fundraiser a month ago I did not know what to expect from it. I was brought up with a life-long believe that we should always rely on our own strength and resources and absolutely never ask for help unless you cannot survive without someone helping you.  My dad used to tell me “don’t be afraid of anything and never ask for anything you can do on your own”. I learned this for good and I never thought I would find myself in a situation where asking for help would not just become a part of my daily life, but an important element of my mom’s treatment.  Making this request for help public and going with it online (the page was viewed almost 2400 times already) was another step I took not without a doubt and questioning if I was doing the right thing.  It is not easy to declare that the person you love more than anybody in this world is severely ill. It is hard to describe the sufferings both physical and emotional that mom is going through. But more than anything it is hard for me to accept that even though I made a decision to bring mom to the US for treatment, I cannot pay for it 100% on my own. This is an absolutely horrifying feeling when you realize that you alone cannot save the life of the person you love and you MUST ask for help…Your help is not just an “addition” to my mom’s treatment, it a HUGE part of it. Your money and your energy, your support and your prayers, your love and good thoughts are things we receive strength from. You help us continue the fight every day.  And you matter more than you would ever know. Thank you.

One of the reasons I decided to bring mom to California for treatment was of course the level of medical care here. Even though it turned out to be a story on its own with misdiagnosis, excruciating treatment, prognosis regarding the new treatment, and other unpleasant experiences, we are still hopeful that the new chemo (Folfiri) that mom needs will help her beat the cancer. But another reason for California was my great desire to bring mom to the Pacific Ocean beach where we could walk on the warm sand together. “Walk the beach” with mom became an obsession when she was still at the hospital back in Russian after that emergency surgery on August 8…And even though our apartment is just on the second block from the beach there were many reasons why we could not make it there.  First, mom was very week and could not walk down to the beach, then it was very cold and we did not want to risk it, then the City of Redondo Beach Public Works started rebuilding the whole promenade along the beach and you could not get to it all, and then it was a combination of all the factors. But finally, on Thursday afternoon we made it to the beach … to the very salty water of the Pacific Ocean. The beach was empty, the sun was shining, there was some cool breezes, and the endless ocean in front of us. For the moments like this, for a chance for my mom to simply enjoy life in a touch of the salty breeze, sand under her feet, sun on her skin, blue sky above her head…I am willing to do anything and fight for every single second of her life.

On another, more unpleasant note, after tremendous setbacks in the struggle to care for my mom, I finally felt that we were moving forward again.  This last Thursday (before we went to the beach), my mom was scheduled to begin her chemotherapy again.  This time for colon cancer!   While I hope that this treatment will be the key to my mom’s recovery, we were facing starting chemotherapy again with more difficulties. The previous six rounds of  chemotherapy that she received over the last five month has ravaged my mom, making her so much weaker, making simple tasks more difficult.  Facing the unknown of what this new treatment might do is difficult.  We have no idea how her body would react to this new treatment. The impact that chemotherapy leaves on body is beyond dramatic, it’s devastating. We were even considering stopping the treatment but then, it would not leave us much hope for mom’s survival.

On Thursday, we arrived at Cedars-Sinai to begin the six-hour chemotherapy infusion, which would be followed by 46 hours of additional infusion at home through the port that was surgically installed almost two weeks ago.  The first step was to draw blood to determine the current state of my mom’s health prior to beginning the chemotherapy treatment.  We then met with Dr. Engelberg and received the news that my mom’s blood count was not good enough to begin treatment.  As a result, my mom will need three injections of a special drug (Neulasta) intended to boost her white blood cell count.  If my mom’s blood count improves we will be able to begin treatment in a week or so.   Another week of delay and another week of uncertainty begins.  

They say life is not about the destination, but rather the journey. It is not about great events, but rather daily small moments. And it is not about how we die but rather about how we live and what experiences we share with those we love.  With your support, we continue our journey full of fear and uncertainly, but also of hope and gratitude for every single moment we share with mom on this planet under the endless sky by the endless ocean…

With Love,

Kate

Russkaya Versiya Obnovleniy (Updates in Russian)

February 7th, 2011

Dorogie Druz'ya! Teper' mojno chitat' obnovleniya na russkom po sleduushemu adresu: http://ekaterinagarcia.livejournal.com/785.html Spasibo! Katya Dear friends, You can read Russian version of the updates now at: http://ekaterinagarcia.livejournal.com/785.html Thank you! Kate

Saturday Update 2/5/2011 with an Introduction for

February 5th, 2011

Dorogie Druz'ya!

Na etom sayte nevozmojno razmestit' informatsiu na russkom yazike! Dlya togo, chtobi prochitat' zametki o maminom sostoyanii, zaydite na site www.facebook.com Zatem naydite mou stranitsu pod imenem "Ekaterina Kholyavenko" -  tam v "Notes" mojno budet prochitat' novosti o nas s mamoy!

ili pishite mame na adres: olga.moscowru@mail.ru

ili mne: katerine_Rus@yahoo.com

Proshu prosheniya za takoe neudobstvo!

Spasibo!

Katya

To all our Russian-speaking friends!

It's impossible to make postings in Russian on this site. To view updates on mom's condition, please go to www.facebook.com. Then please search my profile under "Ekaterina Kholyavenko". you will be able to read the most recent information on mom's condition in "Notes".
You can also email mom at olga.moscowru@mail.ru
or me at katerine_Rus@yahoo.com

I'm sorry for this inconvenience,

Thank you!

Kate

Saturday Update 2/5/2011

Dear friends,

There are moments in life when everything seems better than usual and you want those moments to last longer because the fear of the unknown future is great and is waiting out there for you. I had a similar feeling last Sunday. Everything was a bit better for a moment, but I was afraid of the new week. I had a fear of facing a new day. I was afraid of the future for the first time in my life.  As it turned out, it was not without a reason.

On Tuesday morning (February 1), I got a call from Dr. Farin Amersi’s office. Dr. Amersi is an oncology surgeon at Cedars-Sinai who works with Dr. Michael Engelberg, mom’s new oncologist.  I was explained that before starting a new chemo-therapy regiment (for advanced colon cancer this time), mom needed a special port to be installed under her skin to deliver chemotherapy drugs at home. The surgery was scheduled on Wednesday morning, but prior to the surgery, they needed to examine mom to make sure she can handle the surgery.  The first chemotherapy (the one she had been receiving for ovarian cancer for the last five months!) was extremely toxic for mom’s veins, and she cannot receive chemotherapy through IV anymore.  In fact, her veins are so damaged, that it is a great challenge for the nurses to use them even for taking blood to test. I brought mom to Cedars-Sinai at noon on Tuesday; I thought we wouldn’t stay there for more than a couple of hours.  However our stay continued until 5 pm on Wednesday. As it turned out, mom’s blood cell counts were extremely low. Over the next 24 hours she received a transfusion of three extra units of blood, two units of platelets, and was given one injection of a special drug that increases white blood cell count. She also had the surgery to install a chemotherapy port on Wednesday morning. In case you are curious what this might look like, follow this link:  http://en.wikipedia.org/wiki/Port_%28medical%29

Her new chemotherapy was supposed to be started on Wednesday, in the afternoon. However, because of her blood condition, doctors had to postpone it for at least one more week until mom’s blood cell count becomes acceptable to start a new chemo round. This new regiment is extremely intense. It consists of a 6-hour infusion at the hospital and then continuous 46-hour infusion at home with the help of a special pump that keeps on infusing the drug through the port. This needs to be repeated every two weeks. Mom will need three treatments (in six weeks) followed by the CT-scan to determine how she responds to the treatment.  As a result of the previous chemo, it will be more difficult for mom to fight side effects of the new treatment since her body is already weakened drastically.  

This new chemotherapy is called FOLFIRI (Fol-Fi-Ri). It is a chemo-regimen consisting of leucovorin calcium (calcium folinate), 5-fluorouracil, and irinotecan used in the treatment of advanced-stage and metastatic colorectal cancer. Mom will be receiving  it in combination with Avastin,  which is a relatively new drug designed to interfere with  the process by which new blood vessels develop and carry vital nutrients to a tumor.

In addition to this complex medical information, we have also found out that this chemo-treatment is inhumanely expensive. We paid $6,500 for the surgery to install the port for the chemotherapy. The price tag of the new treatment (that mom actually needs!) is so high, that at this point I am not even comfortable to disclose it mainly due to the fact that we continue to work with hospital management on this issue. I will announce it immediately after we reach an agreement.  One thing is clear, mom needs this treatment and she needs it urgently. Considering the time that we have lost undergoing the treatment for ovarian cancer, it is essential to treat her as soon as possible.

As a result of this information on the cost of the new treatment, we have to increase the amount we are trying to fundraise from $10,000 to $30,000.  I understand that this news can be very discouraging as with your help we have been moving rapidly towards our initial goal. But that is the reality we are facing now. That is the future I was afraid of last Sunday. That is the future we cannot avoid.

Please help us spread the word! Please tell your friends and family. We need your help now more than ever before! We thank all of you who contributed to mom’s treatment fund. We are grateful for your attention and words of encouragement. The amount of people who visit this page is getting close to 2,000! We are thankful for the positive energy you send our way! We thank our friends from the United States, Mexico, Germany, Bulgaria, Russia, Iran, Israel, Netherlands, England, Belarus, China, Japan, Ukraine, Vietnam, Korea, Jordan, Tadjikistan who supported us morally and financially!

February 4 was World Cancer Day. http://en.wikipedia.org/wiki/World_Cancer_Day Now I know that this disease is impossible to fight on your own. It does not know any borders; it does not recognize nationality, gender, age, religion, and it is absolutely random in choosing its victims. But its impact is always very concrete and it hurts a great deal. Please help me to save my mom’s life.  You make a difference for us; we won’t be able to go through this fight without you!

With Love,

Kate

Sunday Update: 1/30/2011

January 30th, 2011

Dear Friends,

I haven’t posted any updates for over a week, and I apologize for that. What we had to go through over the last week is hard to write about. We went through desperation, loss of hope, fear, tears and pain…just to realize that life still goes on and we have to fight this battle even though sometimes there is no energy or hope left. 

We finally were able to have an appointment with a new doctor at Cedars-Sinai, Dr. Michael Engelberg. He ordered a new chemotherapy for colon cancer that mom will start next week. This chemotherapy is different. It is a combination of two different drugs that mom will receive every two weeks for six hours through IV. They will also install a tube into her body connected to a plastic container with the drug. After the chemotherapy at the hospital, she will go home and for the next 48 hours a special pump will infuse the chemo drugs into her blood stream through that tube. This is an extremely painful and uncomfortable procedure and considering the colostomy and nephrostomy tube that mom already has, this will further limit her freedom of movement, while decreasing her quality of life.

In addition to this painful information, we have suffered a devastation of our moral and hope. The realization that we might have lost five precious months because mom’s diagnosis was not verified in the beginning and was, in fact, wrong is excruciating. I want to tell you that we feel optimistic and energetic, but that would not be true. And I feel I must tell you how we truly feel. What we feel is extreme pain, sadness, disappointment, fear, and despair…

I am still waiting for the cash quote from Cedars-Sinai for the new chemotherapy. Waiting for this information call feel like torture, with my mom’s treatment dependent on every administrative step the hospital takes.  They told me they will contact me on Monday (1/31). But as everything with them, I suspect it might take longer. Mom has to start this new treatment on Wednesday, but unless we pay, they will not do it. They are good at canceling appointments…that is something else we’ve experienced over the past two weeks.

On Friday (1/28) we had a second opinion meeting with Dr. Richard Finn at UCLA Medical. He confirmed the new regiment prescribed by Cedars-Sinai new doctor, but also recommended AVASTIN  a targeted drug for colon cancer patients. I asked Cedars-Sinai whether they will also recommend it. The drug is extremely expensive; one dose costs $5,000 with a discount. Mom will need at least 4 doses if Cedars-Sinai recommends the drug and adds it to her treatment. I will contact the manufacture to ask for a discount, but if we don’t get a discount, we will have to pay. This is the price of a hope…and hopefully life.

What does give us a hope? A new day with sunshine in it, even with rain and cold air --- just a new day and the fact mom opens her eyes and is alive. A cup of coffee, the smell of toast…The fact that mom is here with me in our old tiny one-bedroom apartment by the huge Pacific Ocean.  What gives us hope is your support, positive energy and love.  Support of people we know and support of people we have never even met! Mom’s page was visited over 1400 times for the last two weeks. It means our story touches hearts, and people, YOU are willing to help!  YOUR HELP is something that does not let us give up!  YOUR HELP keep us fighting because we realize WE ARE NOT ALONE in this. We have people WHO CARE about us, who root for us, and who are sincerely interested in our success. Who HOPE my mom will LIVE as much as we want her to live.  I thank all you people who contributed on-line. My college friends from Moscow State University (Department of History) that I haven’t seen for over three years and I was touched my their attention and support, my friend from Bulgaria whom I have known for almost 10 years, Bayaneh’s family and friends whom we don’t know but who showed us their great support and love, my co-workers from The Port of Long Beach, my friend Dalia, my friend Diana.  In addition to the amount donated you see on mom’s GiveForward page, we have also received $3,250 in personal checks. We thank our friends George and Claudia, Michael, Fema, Jose and the Port of Long Beach’s Engineering Design Team for their generous gift! 

Please, help us spread the word, help us fight, help us with your energy and your thoughts, we need all help we can get. We are not going to give up…

The battle goes on!

Yours,

Olga & Kate

Saturday Update 1/22/11

January 22nd, 2011

Dear Friends,

I would like to extend my mom’s and my sincere gratitude to all of you for your generous support, for your prayers, words of encouragement, and love! We were deeply touched by the amount of attention we’ve have received and the positive energy that helps us keep fighting. We thank you all for your open and kind hearts and for your ability to feel and respond to our hardships. I especially would like to recognize what my friend and co-worker Bayaneh Nikpour did. Without telling me anything, she made a decisions to cancel all her February 1st Birthday celebration events and asked all of her friends and family to donate the money that they had planned to spend on her birthday to my mom’s cancer treatment fund. Bayaneh made our battle a part of her life…actions like this change us forever. “We are all part of the same body”, she said… I thank you Bayaneh and everybody who is helping me to spread the word and make this fund-raising a success. I’m confident that together we will reach our goal!

I previously shared that my mom underwent a biopsy procedure last Tuesday (1/18/11) to examine the cancer tissue in her lungs.  The doctors have now informed us on 1/20/11 that the results of the biopsy indicate that the cancer is not ovarian as previously diagnosed, but rather colon cancer.  The shock of the news has been devastating.  Since October 2010, my mom has been undergoing chemotherapy for advanced ovarian cancer.  It now turns out that these painful and difficult chemotherapy infusions may have been in vain due to an incorrect diagnosis. We are still trying to figure out what all this means and why the biopsy was not done in the beginning of the treatment to make sure she is treated for what she actually has, but at the least it means that we will need to get a new oncologist.  Until we meet with a colon cancer specialist, we will not be able to schedule her surgery or begin the proper chemotherapy treatment.  I have been trying to schedule an appointment with a colon oncologist at Cedars-Sinai all Thursday and Friday. First thing Monday, I will continue this effort. As it turns out, it is not easy to change the doctor. We have very little administrative support from the hospital and practically have to start the search and treatment from the beginning again (including paying for the initial consultation)! I am fearful to think about all this time that we might have lost and I pray every day that it is still not too late to change the situation for the better!

Please keep my mom in your thoughts and prayers. We need your support now more than ever before!  And for all those who have contributed financially to my mom’s treatment, we say thank you.  The battle continues...

Kate

The battle goes on - 01/19/2011

January 20th, 2011

Dear Friends! Thank you for your support, donations, and words of encouragement as my mom fights cancer.  Unfortunately, yesterday (1/18/11) we had two setbacks.  First, we discovered through a CT scan that cancer did not respond to the first round of chemotherapy treatment as we expected.  While my mom is still stable, we did not see the progress we had hoped.  Our next steps are to prepare for another surgery. This will be followed by another round of chemotherapy infusions.

Yesterday, we also learned that we were denied for Cedars-Sinai’s Charity Program that would reduce medical costs significantly.  My mom and my family face a huge financial hurdle in a providing for her treatment.  The silver lining is that the hospital offers discount for uninsured patients but even with the discount the cost of the medical treatment is extremely high.  Unfortunately, with a $53,000 in costs already billed (we have paid $25,000 so far), the surgery estimated at $120,000, and the next round of chemotherapy estimated at a cost of $30,000, we are still facing at least $50,000 in bills after the discount is applied.  So, for those who have donated to my mom’s treatment, I extend a heartfelt thank you from my mom, myself, and my family.  I would also ask that anyone that can to please consider helping my mom beat cancer and donate.  Any amount is greatly appreciated.  Finally, please spread the word.  Thank you again.  With your help, my mom will beat cancer!

Ekaterina “Kate” Garcia

Tuesday at the hospital - more tests

January 18th, 2011

Dear friends! Thank you for your positive thoughts and support! We are still at the hospital. At 8 am today mom had a very difficult procedure – biopsy of the lung. That’s when a long needle in inserted to one of the lungs through the back under the ultrasound control to obtain a sample of the tissue. The doctors are trying to determine the effectiveness of the initial chemo-therapy to map the next treatment steps.  I will keep you posted! Thank you!

We are still at Cedars-Sinai

January 17th, 2011

We are still at the hospital today. At first they were going to release us in the afternoon today, but now the plan has changed. Mom is scheduled for a biopsy in the evening today based on the results on the most recent CT-scan….