August 2014
A lot of time has passed since Jen wrote her last update and a lot has changed during that time. Since then, Jen continued to go into Boston to have her bi-monthly MRI’s at Dana Farber Cancer Institute. For a long time, the doctors would say the same thing after reading her scans… “No sign of any tumors – MRI is clean!”. Every two months we would celebrate with her as she got the news that we almost came to expect. But by October 2014, Jen knew that something was wrong. The night before the MRI she asked us all to pray. She just had a feeling that this wasn’t going to be a good scan. In the doctor’s office that day, we got the results of that scan that were not at all what we were praying for. Three new tumors had shown up in three different areas of the brain – all inoperable. Despite knowing that a relapse was inevitable it did not lessen the blow when we heard those words.
Her doctor was very good in laying out a treatment plan and because of how well Jen had responded to the chemo drug “Temodar”, her doctor suggested that we begin back on that course of treatment immediately. Unfortunately, the Temodar didn’t seem to be having the wonderful effect on her that it once did and her symptoms began to worsen. Over the course of the next 8 months, Jen received daily care from her parents, family and friends while she cycled through a variety of drugs including Temodar, Avastin, CCNU, and a combination of both. With each passing month, the MRI scans were getting better. The tumors were shrinking in some cases and were stable in others. But strangely enough, during this same time period, her symptoms continued to worsen. Slowly she began losing strength in her left side and began slurring her speech. Often times, her legs would give out while she was walking or standing making getting around increasingly difficult. It became harder and harder for her to use her hands and she often found herself choking on liquids and on some foods. At first we thought that it may be a reaction to some of the drugs that she was taking, but in the end, her doctor told us that although the original 3 tumors were in fact not continuing to grow, other tumors that were not visible on the MRI were in fact growing and causing these symptoms to worsen. Over the course of 8 months her doctor tried, through the use of various drugs, to reduce the symptoms and stop the growth of these new tumors. As the months went by it became increasingly difficult and ultimately impossible for Jen to walk, care for herself, drink, speak, swallow and eat. Her main form of communication had become, using a printed communication board to point to letters to spell out what she wanted to say. Despite all the best attempts by Jen and her doctor to stop the decline, by the end of June, she had become unable to leave the house any longer to be able to get her treatments. By the beginning of July, she had become bedridden and unable to eat and had for the most part completely lost the ability to communicate except for a “thumbs up” or a “thumbs down” to indicate yes or no.
On July 11, 2014, Jen began in-home Hospice care to help us ensure that Jen’s last days would be as pain free as possible. In fact, if there is a blessing at all to be found in the last 9 months, it is that Jen had very little pain throughout the whole process. On July 14, 2014, Jen took her last breath here on Earth. She was surrounded by those who loved her and the end of her time here on Earth was very peaceful. She was just 35-years old with an (almost) 5-year old son. Our hearts are broken and we are still trying to figure out how to go on without her.
The Gray Matters Brain Cancer Foundation was started shortly after Jen was diagnosed back in 2010. We started the foundation with the hopes of raising money to help provide the necessary funding for the critical research needed to finally put an end to this terrible disease. In the past four years, we have donated more than $300,000 toward brain cancer research. We wish that the cure would have been found while Jen was still here with us, but it didn’t come fast enough for her. But for us, this isn’t the end. We are now, more than ever, determined to continue to raise money to fund research so that maybe, just maybe, someone else could be spared the end that Jen had to endure.
From the first day she was diagnosed, Jenny didn’t just tell us how to handle the diagnosis. She showed us. Every day she showed us how to be strong. How to be positive and how to live life to the fullest. She set the bar high and for the next 4 ½ years she kept her strength, positive attitude, strong will and sense of humor until the very end. We recently came across a quote from Stuart Scott that really embodies the spirit of Jennifer:
"When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live and in the manner in which you live... So live.. LIVE! Fight like hell and when you get too tired to fight, then lay down and rest and let some else fight for you."
Jenny fought like hell and she did not lose to cancer. She beat cancer by the way she fought. She beat cancer by the way she lived. Now that she is at rest, we will continue her fight until no one ever has to endure this battle again.
Jennifer’s Wake and Funeral Mass were wonderful testaments to the kind of person she was. This video was played after the Funeral Mass as a beautiful memorial to a life taken way too soon. We hope it allows you to get to meet the beautiful person that we called our sister.
Thanks for stopping by and taking some time to visit with us. Remember, together with your help, we WILL see an end to brain cancers.
Brian & Kathy Stewart
A lot of time has passed since Jen wrote her last update and a lot has changed during that time. Since then, Jen continued to go into Boston to have her bi-monthly MRI’s at Dana Farber Cancer Institute. For a long time, the doctors would say the same thing after reading her scans… “No sign of any tumors – MRI is clean!”. Every two months we would celebrate with her as she got the news that we almost came to expect. But by October 2014, Jen knew that something was wrong. The night before the MRI she asked us all to pray. She just had a feeling that this wasn’t going to be a good scan. In the doctor’s office that day, we got the results of that scan that were not at all what we were praying for. Three new tumors had shown up in three different areas of the brain – all inoperable. Despite knowing that a relapse was inevitable it did not lessen the blow when we heard those words.
Her doctor was very good in laying out a treatment plan and because of how well Jen had responded to the chemo drug “Temodar”, her doctor suggested that we begin back on that course of treatment immediately. Unfortunately, the Temodar didn’t seem to be having the wonderful effect on her that it once did and her symptoms began to worsen. Over the course of the next 8 months, Jen received daily care from her parents, family and friends while she cycled through a variety of drugs including Temodar, Avastin, CCNU, and a combination of both. With each passing month, the MRI scans were getting better. The tumors were shrinking in some cases and were stable in others. But strangely enough, during this same time period, her symptoms continued to worsen. Slowly she began losing strength in her left side and began slurring her speech. Often times, her legs would give out while she was walking or standing making getting around increasingly difficult. It became harder and harder for her to use her hands and she often found herself choking on liquids and on some foods. At first we thought that it may be a reaction to some of the drugs that she was taking, but in the end, her doctor told us that although the original 3 tumors were in fact not continuing to grow, other tumors that were not visible on the MRI were in fact growing and causing these symptoms to worsen. Over the course of 8 months her doctor tried, through the use of various drugs, to reduce the symptoms and stop the growth of these new tumors. As the months went by it became increasingly difficult and ultimately impossible for Jen to walk, care for herself, drink, speak, swallow and eat. Her main form of communication had become, using a printed communication board to point to letters to spell out what she wanted to say. Despite all the best attempts by Jen and her doctor to stop the decline, by the end of June, she had become unable to leave the house any longer to be able to get her treatments. By the beginning of July, she had become bedridden and unable to eat and had for the most part completely lost the ability to communicate except for a “thumbs up” or a “thumbs down” to indicate yes or no.
On July 11, 2014, Jen began in-home Hospice care to help us ensure that Jen’s last days would be as pain free as possible. In fact, if there is a blessing at all to be found in the last 9 months, it is that Jen had very little pain throughout the whole process. On July 14, 2014, Jen took her last breath here on Earth. She was surrounded by those who loved her and the end of her time here on Earth was very peaceful. She was just 35-years old with an (almost) 5-year old son. Our hearts are broken and we are still trying to figure out how to go on without her.
The Gray Matters Brain Cancer Foundation was started shortly after Jen was diagnosed back in 2010. We started the foundation with the hopes of raising money to help provide the necessary funding for the critical research needed to finally put an end to this terrible disease. In the past four years, we have donated more than $300,000 toward brain cancer research. We wish that the cure would have been found while Jen was still here with us, but it didn’t come fast enough for her. But for us, this isn’t the end. We are now, more than ever, determined to continue to raise money to fund research so that maybe, just maybe, someone else could be spared the end that Jen had to endure.
From the first day she was diagnosed, Jenny didn’t just tell us how to handle the diagnosis. She showed us. Every day she showed us how to be strong. How to be positive and how to live life to the fullest. She set the bar high and for the next 4 ½ years she kept her strength, positive attitude, strong will and sense of humor until the very end. We recently came across a quote from Stuart Scott that really embodies the spirit of Jennifer:
"When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live and in the manner in which you live... So live.. LIVE! Fight like hell and when you get too tired to fight, then lay down and rest and let some else fight for you."
Jenny fought like hell and she did not lose to cancer. She beat cancer by the way she fought. She beat cancer by the way she lived. Now that she is at rest, we will continue her fight until no one ever has to endure this battle again.
Jennifer’s Wake and Funeral Mass were wonderful testaments to the kind of person she was. This video was played after the Funeral Mass as a beautiful memorial to a life taken way too soon. We hope it allows you to get to meet the beautiful person that we called our sister.
Thanks for stopping by and taking some time to visit with us. Remember, together with your help, we WILL see an end to brain cancers.
Brian & Kathy Stewart
You're a statistic of one. No two tumors are alike. No one shares your genetic makeup and your unique brain structure. This doesn't mean you have to face this journey alone. It does mean that as you explore treatment options and success rates of various procedures, you cannot assume that the statistics that you encounter apply to you.
Dr. Peter Black, Neurosurgeon
April 2, 2012
Dear Family and Friends,
I came across the above quote in an online support group that I belong to and I read it frequently to myself on the bad days when I have them. Just over 2 years ago, I was diagnosed with Glioblastoma, Stage 4 Brain Cancer. My MRI two weeks ago was clear and continues to exhibit what my neuro-oncologist referred to as "no measurable disease." So I am extremely thankful and thrilled. I am still on a clinical trial at Dana Farber Cancer Institute in Boston, Mass., and will continue to pursue this trial for the next year. At my last appointment, my brother and I learned of future research; it sounds very promising and exciting. While hearing this exciting news, I was thinking that my neuro-oncologist and I have similar hairstyles and I found that upsetting: We both have short dark curly hair. When I mentioned this to my brother, he could only rub it in like only an older brother can. He joked it looks better on him and so it does. So I cut my hair and dyed it a dark red and it is not so curly anymore. Go figure.
I still pursue quite a few supplemental therapies as well. I am continuing with acupuncture, yoga, diet changes and supplements. My husband just realized that I drink my coffee black now. No sugar and no dairy. Although those are new to me, I recently have begun to explore Ayurvedic medicine and Macrobiotics. Anything to keep on this path I am on to continued and improved health.
Thank you for keeping me in your prayers!
Love,
Jen
Dr. Peter Black, Neurosurgeon
April 2, 2012
Dear Family and Friends,
I came across the above quote in an online support group that I belong to and I read it frequently to myself on the bad days when I have them. Just over 2 years ago, I was diagnosed with Glioblastoma, Stage 4 Brain Cancer. My MRI two weeks ago was clear and continues to exhibit what my neuro-oncologist referred to as "no measurable disease." So I am extremely thankful and thrilled. I am still on a clinical trial at Dana Farber Cancer Institute in Boston, Mass., and will continue to pursue this trial for the next year. At my last appointment, my brother and I learned of future research; it sounds very promising and exciting. While hearing this exciting news, I was thinking that my neuro-oncologist and I have similar hairstyles and I found that upsetting: We both have short dark curly hair. When I mentioned this to my brother, he could only rub it in like only an older brother can. He joked it looks better on him and so it does. So I cut my hair and dyed it a dark red and it is not so curly anymore. Go figure.
I still pursue quite a few supplemental therapies as well. I am continuing with acupuncture, yoga, diet changes and supplements. My husband just realized that I drink my coffee black now. No sugar and no dairy. Although those are new to me, I recently have begun to explore Ayurvedic medicine and Macrobiotics. Anything to keep on this path I am on to continued and improved health.
Thank you for keeping me in your prayers!
Love,
Jen
November 3, 2010
Dear Family and Friends,
Thank you all so much for your love, prayers and support. I am doing well! I am thrilled to tell you that I have had 2 MRIs (1 at the end of August and 1 end of October) both scans revealed no change. Both were clear!! In addition, my neuro oncologist informed me that genetic testing was completed on the original tumor tissue sample from the surgery back in January. This testing proved to be in my favor; the results revealed that one particular gene was turned off and when this happens the chemo drug I am on is more effective.
In January it will be one year, and when I look back, I remember my aunt, a cancer survivor herself, said this is to me. This is a job now, a job which you did not apply for and a job you do not want. And that is very true. So that's why I am fully invested in participating in this clinical trial as well as acupuncture, exercise, reiki, and juicing. Yes, even juicing wheatgrass. Sounds gross? It is.
Gray Matters hosted their first annual event in early October; their golf outing/auction was a success! My son, Sean enjoyed the reception and the applause! It was the biggest birthday party he had ever seen. Sean is an absolute joy by the way! He is pulling to stand on everything! Unlike some people I know, he is not a fan of his gated community!
Thank you so much for all your love, prayers and support! I am truly thankful!
Love
Jen
Dear Family and Friends,
Thank you all so much for your love, prayers and support. I am doing well! I am thrilled to tell you that I have had 2 MRIs (1 at the end of August and 1 end of October) both scans revealed no change. Both were clear!! In addition, my neuro oncologist informed me that genetic testing was completed on the original tumor tissue sample from the surgery back in January. This testing proved to be in my favor; the results revealed that one particular gene was turned off and when this happens the chemo drug I am on is more effective.
In January it will be one year, and when I look back, I remember my aunt, a cancer survivor herself, said this is to me. This is a job now, a job which you did not apply for and a job you do not want. And that is very true. So that's why I am fully invested in participating in this clinical trial as well as acupuncture, exercise, reiki, and juicing. Yes, even juicing wheatgrass. Sounds gross? It is.
Gray Matters hosted their first annual event in early October; their golf outing/auction was a success! My son, Sean enjoyed the reception and the applause! It was the biggest birthday party he had ever seen. Sean is an absolute joy by the way! He is pulling to stand on everything! Unlike some people I know, he is not a fan of his gated community!
Thank you so much for all your love, prayers and support! I am truly thankful!
Love
Jen
May 26, 2010
Dear Family and Friends,
Many of you have asked what has been going on so I wanted to send an update. Thank you all for your incredible support.
In March, my family and I traveled to Washington DC for the annual brain tumor society conference. Briefly, this trip was successful due to the promising new advances made within the last five years in brain tumor research. Scientists spoke of the positive results in the duplication of the cancer cell in the lab as well as extraordinary results with one Wonder drug called Avastin. Although the scientists did caution the audience that more research needs to be done and that cancer cells are very resourceful in finding other pathways to exist, they were extremely hopeful. The underlying tone of the conference was optimistic; there were many outliers there, both in the audience and presenting. I was even able to make a few contacts that I email frequently with to compare notes and to remain strong and positive.
Radiation and my daily Temodar dose (oral chemo) ended in late March. I was able to have a short vacation visiting my parents. Both Sean and I had a wonderful time. He is becoming a big fan of the water! While we were there, my two bodyguards and I (my father and brother) traveled back to MD Anderson in Texas to pursue information regarding clinical trials. While I was there I received some great news that my post radiation MRI yielded CLEAR results! Woo Hoo. My husband, Tom, who was on a conference call, was able to hear the wonderful results. While I was there I did enroll in the Factorial Trial. The computer randomly assigned me to the drugs Thalidomide and Accutane as well as biweekly Temodar. I withdrew from this study for two reasons. First, while I was signing the consent forms, I became worried about the possible side effects of Thalidomide, which included blood clots. To prevent this, I would be prescribed Coumadin, a blood thinner. So not only I am winning and running a difficult marathon with this disease, I would have to worry about other possible health risks. No thanks. My second reason is that in taking Thalidomide it would prevent me from participating in future clinical trials of the same drug category. This drug category is called “antiangiogenic” and it attacks the blood vessels supporting the cancer cells. Thalidomide is an older version of this drug type; Avastin is a newer solution and there are newer developments being studied now in this cancer cell pathway.
Another pathway that is being researched is the inhibition of the cancer cell’s DNA to reproduce. I am currently enrolled in the SAHA (DNA inhibitor) trial at Dana Farber. I completed my first cycle (month) and eleven more to go. I am taking Temodar five days out of a month as well as SAHA for two weeks; Week 1 is paired with Temodar and Week 3 by itself. Weeks 2 and 4, I don’t take any medication and feel great. In fact I am returning back to work during these weeks. My side effects are bearable; I am nauseous while taking Temodar and just tired while taking Saha. My blood work has been good; my platelet count has been slightly below the normal parameters. As a result, I am proceeding with the higher dosage of oral chemo. Yuck. Damn them. Since I am done radiation, I acquire MRIs every two months. My next one is at the end of June.
Thank you so much for all the positive thoughts and prayers for me and my family. They are continuing to give me strength as I continue to fight this diagnosis. My family and friends have been incredible during this journey. I must say that I truly don’t feel alone. My family has begun a Gray Matters Brain Cancer Foundation. The Gray Matters Brain Cancer Foundation is hosting their first annual Golf Outing and Dinner and Silent Auction on October 4th. In addition, friends have offered to host fundraisers in the Philadelphia and DC areas. This is so very exciting.
Lastly, I am doing okay. I know I was making jokes of having multiple wigs for my different personalities. However, I am not comfortable in it, even though the saleswoman referred to her name as Erica. Ha-ha. I prefer accessorizing with my scarves. I am finding the following activities: acupuncture, yoga, jogging, mediation and of course being a MOM very beneficial. I do still say my mantras but because I have a wonderful support system, I am seldom distraught so thank you!!
Love
Jen
Dear Family and Friends,
Many of you have asked what has been going on so I wanted to send an update. Thank you all for your incredible support.
In March, my family and I traveled to Washington DC for the annual brain tumor society conference. Briefly, this trip was successful due to the promising new advances made within the last five years in brain tumor research. Scientists spoke of the positive results in the duplication of the cancer cell in the lab as well as extraordinary results with one Wonder drug called Avastin. Although the scientists did caution the audience that more research needs to be done and that cancer cells are very resourceful in finding other pathways to exist, they were extremely hopeful. The underlying tone of the conference was optimistic; there were many outliers there, both in the audience and presenting. I was even able to make a few contacts that I email frequently with to compare notes and to remain strong and positive.
Radiation and my daily Temodar dose (oral chemo) ended in late March. I was able to have a short vacation visiting my parents. Both Sean and I had a wonderful time. He is becoming a big fan of the water! While we were there, my two bodyguards and I (my father and brother) traveled back to MD Anderson in Texas to pursue information regarding clinical trials. While I was there I received some great news that my post radiation MRI yielded CLEAR results! Woo Hoo. My husband, Tom, who was on a conference call, was able to hear the wonderful results. While I was there I did enroll in the Factorial Trial. The computer randomly assigned me to the drugs Thalidomide and Accutane as well as biweekly Temodar. I withdrew from this study for two reasons. First, while I was signing the consent forms, I became worried about the possible side effects of Thalidomide, which included blood clots. To prevent this, I would be prescribed Coumadin, a blood thinner. So not only I am winning and running a difficult marathon with this disease, I would have to worry about other possible health risks. No thanks. My second reason is that in taking Thalidomide it would prevent me from participating in future clinical trials of the same drug category. This drug category is called “antiangiogenic” and it attacks the blood vessels supporting the cancer cells. Thalidomide is an older version of this drug type; Avastin is a newer solution and there are newer developments being studied now in this cancer cell pathway.
Another pathway that is being researched is the inhibition of the cancer cell’s DNA to reproduce. I am currently enrolled in the SAHA (DNA inhibitor) trial at Dana Farber. I completed my first cycle (month) and eleven more to go. I am taking Temodar five days out of a month as well as SAHA for two weeks; Week 1 is paired with Temodar and Week 3 by itself. Weeks 2 and 4, I don’t take any medication and feel great. In fact I am returning back to work during these weeks. My side effects are bearable; I am nauseous while taking Temodar and just tired while taking Saha. My blood work has been good; my platelet count has been slightly below the normal parameters. As a result, I am proceeding with the higher dosage of oral chemo. Yuck. Damn them. Since I am done radiation, I acquire MRIs every two months. My next one is at the end of June.
Thank you so much for all the positive thoughts and prayers for me and my family. They are continuing to give me strength as I continue to fight this diagnosis. My family and friends have been incredible during this journey. I must say that I truly don’t feel alone. My family has begun a Gray Matters Brain Cancer Foundation. The Gray Matters Brain Cancer Foundation is hosting their first annual Golf Outing and Dinner and Silent Auction on October 4th. In addition, friends have offered to host fundraisers in the Philadelphia and DC areas. This is so very exciting.
Lastly, I am doing okay. I know I was making jokes of having multiple wigs for my different personalities. However, I am not comfortable in it, even though the saleswoman referred to her name as Erica. Ha-ha. I prefer accessorizing with my scarves. I am finding the following activities: acupuncture, yoga, jogging, mediation and of course being a MOM very beneficial. I do still say my mantras but because I have a wonderful support system, I am seldom distraught so thank you!!
Love
Jen
February 2010
Dear Family and Friends,
I want to thank you all so much for your love and support. I can't tell you enough how much I appreciate your kind thoughts, prayers, cards, emails, voicemails, gifts, flowers, offers to come visit and offers to help in anyway. It keeps me going. And sometimes if I don't respond, please know that I am working on it or email/call again and yell at me.
Briefly, my family and I went to Dana Farber and MGH the week following my craniotomy (01/08) to discuss treatment options. Both hospitals offered the standard care. I did not qualify for any clinical trials at either place at this time due to my complete removal of my tumor. Still my entourage and I wanted to explore all possible options.
My family and I left Monday for Houston; I had an appointment in Houston at MD Anderson Cancer Center, ranked #1 on Tuesday. We arrived home yesterday. Sean is a seasoned traveler now from being on four flights in 3 days. He did wonderfully this trip; who wouldn't with Meme, Grandma and Grandpa, Mom and Dad catering to his every whim.
Back to MD Anderson, We (Tom, Sean, My mother-in-law, and my parents) met with Dr. Yung and his neuro oncology fellow Dr. Shanka. We have a treatment plan!!! I am pursuing radiation and chemo at Dana Farber per Dr. Yung's recommendation. He was hesitant for me to receive radiation at a local hospital where they only see limited patients with brain tumors. So I will be receiving radiation for five days/ 6 weeks from Dana Farber in addition to oral chemo (Temedar). I have 4 weeks rest period then I travel back to Houston. Dr Yung and Dr. Shanka were very positive about me taking supplements except antioxidants. They both recommended that I be set up with an appointment with integrative medicine when I return in 9 weeks.
The standard care of treatment after the 4 week rest period is the continuation of chemo for one week out of a month for a year. I don't want to do only the standard of care. When I return in 9 weeks to Houston, I will be enrolled in a randomized trial provided that I do not show evidence of a tumor re-growth in the 4 week rest period. I want to pursue the trial called the Factorial Trial. This trial is a randomized study since 2005 at MD Anderson. This trial offers many different options that I could be randomly selected for: higher dose of chemo, drug1: Accutane, Drug 2 Thalidomide, and Drug 3 Celebrex. So I could be randomly selected for just the higher dose of chemo or chemo paired with one of these drugs, chemo paired with 2 of these drugs or chemo paired with all 3. I will be able to take these drugs orally so I will be home and followed by my neuro-oncologist at Dana Farber. I will have to travel back to Houston every 8 weeks.
If the tumor regrows itself within this rest period; I still have options available and I'll send an update then.
I have heard consistent factors that make me an outlier despite this bleak diagnosis. I am young, overall healthy and had a complete removal of this tumor. Therefore I will do everything I can to beat this cancer and continue to be an outlier in this Statistical Bell curve. On that note, I want to recommend a book that was recommended to me: Anti Cancer A New Way of Life by Dr. David Schreiber. This book talks about it all! The author himself was diagnosed with brain cancer and he offers important information regarding how the patient can supplement his conventional treatment for the best possible outcome. And it is RESEARCH BASED!
On another note, some seem surprised to see that I have my hair. I did not have my head shaved for the surgery. And due to my part, you probably wouldn't be able to tell. I have attached a picture in case you're curious. I will lose some of my hair due to radiation. Dr. Shanka recommended to me that I pull my hair up while I get radiation and maybe my part will continue to cover my bald spot. I am thinking of buying a wig just in case. It could be some fun; I could be like Jennifer Garner from the TV show Alias. (After surgery I was placed on steroids to reduce swelling; a side effect is steroid psychosis) Bring on the hallucinations and a wig and off I go!
Lastly, I am doing okay. I try to laugh as much as possible. I am saying four mantras to myself on a regular hourly basis to alleviate my anger, despair and fear. "I have brain cancer, **** You, "Don't even go there," with negative thoughts, "One day at a time," and "I'm well" and focusing on the positive that I have: my family and friends.
Thank you all so much for your encouragement and support for not only me but my family as well. I am SO grateful for my family and friends and I am so grateful for my family and friends' friends and family.
Love,
Jen
Dear Family and Friends,
I want to thank you all so much for your love and support. I can't tell you enough how much I appreciate your kind thoughts, prayers, cards, emails, voicemails, gifts, flowers, offers to come visit and offers to help in anyway. It keeps me going. And sometimes if I don't respond, please know that I am working on it or email/call again and yell at me.
Briefly, my family and I went to Dana Farber and MGH the week following my craniotomy (01/08) to discuss treatment options. Both hospitals offered the standard care. I did not qualify for any clinical trials at either place at this time due to my complete removal of my tumor. Still my entourage and I wanted to explore all possible options.
My family and I left Monday for Houston; I had an appointment in Houston at MD Anderson Cancer Center, ranked #1 on Tuesday. We arrived home yesterday. Sean is a seasoned traveler now from being on four flights in 3 days. He did wonderfully this trip; who wouldn't with Meme, Grandma and Grandpa, Mom and Dad catering to his every whim.
Back to MD Anderson, We (Tom, Sean, My mother-in-law, and my parents) met with Dr. Yung and his neuro oncology fellow Dr. Shanka. We have a treatment plan!!! I am pursuing radiation and chemo at Dana Farber per Dr. Yung's recommendation. He was hesitant for me to receive radiation at a local hospital where they only see limited patients with brain tumors. So I will be receiving radiation for five days/ 6 weeks from Dana Farber in addition to oral chemo (Temedar). I have 4 weeks rest period then I travel back to Houston. Dr Yung and Dr. Shanka were very positive about me taking supplements except antioxidants. They both recommended that I be set up with an appointment with integrative medicine when I return in 9 weeks.
The standard care of treatment after the 4 week rest period is the continuation of chemo for one week out of a month for a year. I don't want to do only the standard of care. When I return in 9 weeks to Houston, I will be enrolled in a randomized trial provided that I do not show evidence of a tumor re-growth in the 4 week rest period. I want to pursue the trial called the Factorial Trial. This trial is a randomized study since 2005 at MD Anderson. This trial offers many different options that I could be randomly selected for: higher dose of chemo, drug1: Accutane, Drug 2 Thalidomide, and Drug 3 Celebrex. So I could be randomly selected for just the higher dose of chemo or chemo paired with one of these drugs, chemo paired with 2 of these drugs or chemo paired with all 3. I will be able to take these drugs orally so I will be home and followed by my neuro-oncologist at Dana Farber. I will have to travel back to Houston every 8 weeks.
If the tumor regrows itself within this rest period; I still have options available and I'll send an update then.
I have heard consistent factors that make me an outlier despite this bleak diagnosis. I am young, overall healthy and had a complete removal of this tumor. Therefore I will do everything I can to beat this cancer and continue to be an outlier in this Statistical Bell curve. On that note, I want to recommend a book that was recommended to me: Anti Cancer A New Way of Life by Dr. David Schreiber. This book talks about it all! The author himself was diagnosed with brain cancer and he offers important information regarding how the patient can supplement his conventional treatment for the best possible outcome. And it is RESEARCH BASED!
On another note, some seem surprised to see that I have my hair. I did not have my head shaved for the surgery. And due to my part, you probably wouldn't be able to tell. I have attached a picture in case you're curious. I will lose some of my hair due to radiation. Dr. Shanka recommended to me that I pull my hair up while I get radiation and maybe my part will continue to cover my bald spot. I am thinking of buying a wig just in case. It could be some fun; I could be like Jennifer Garner from the TV show Alias. (After surgery I was placed on steroids to reduce swelling; a side effect is steroid psychosis) Bring on the hallucinations and a wig and off I go!
Lastly, I am doing okay. I try to laugh as much as possible. I am saying four mantras to myself on a regular hourly basis to alleviate my anger, despair and fear. "I have brain cancer, **** You, "Don't even go there," with negative thoughts, "One day at a time," and "I'm well" and focusing on the positive that I have: my family and friends.
Thank you all so much for your encouragement and support for not only me but my family as well. I am SO grateful for my family and friends and I am so grateful for my family and friends' friends and family.
Love,
Jen