Last week was another one for the records, Hanukkah, catching up after a week away and then...Leo appointments...finally met an amazing pediatric physical therapist, Nancy Dilger, who will get him the proper help he needs. I know I shouldn't go there but I feel like if he had been working with this specialist 6 months ago he would be walking by now. At least now he is in the right hands. He will see her at her West LA clinic once a week in addition to twice a week in-home physical therapy through Westside Regional Center starting this Wednesday. He also started speech therapy today and will have twice weekly sessions. It was his birthday yesterday and my poor baby was sick. He started a runny nose sunday at Abby's party and now it's hitting him full force. Abby woke up with a runny nose yesterday morning too...after having the best weekend ever, her friend's Princess party (wih Cinderella and Aurora) and then her very own over the top girls only fairy party Sunday! This week is the combination of sick kids, a cold that Mommy has now caught too, and finally, beginning chemotherapy. The insurance company approved the "pre-authorization" of the Xeloda Monday afternoon so I started it last night! There was a moment where I thought, "why not just start it in the morning?" but then I remembered how thankful I am that there is a medicine available to me that will save my life so why wait??? Time to get the party started.
Tuesday, December 18, 2012
Wednesday, December 12, 2012
Flaming out...
Dr. Moulder said I should start Xeloda right away as a stop gap treatment until I get the results from the repeat liver biopsy. She had me repeat the CT scan because she wanted to confirm that nothing has changed since the PET/CT I completed in October. She made it sound urgent to start the pills. Now it is crickets and I can't get in touch with her. Every breast oncologist in the nation (practically) was at the San Antonio breast conference last week. And now it is almost two weeks since I had that meeting with her. I am getting frustrated. So far the best news I've heard is that my brain MRI was clear. I am still waiting to hear about the CT scan and the treatment plan. MD Anderson is completely high tech. Everything, all my medical reports, including physician's clinic notes are online and accessible to me. Nothing is off limits or filed away. I like that. I also see that my chest x-ray came back completely normal as well. My blood work shows however that my tumor markers are still creeping higher. And that is why I want to get started on this Xeloda immediately...what is taking so freaking long?!?!?
Monday, December 3, 2012
Houston...we have lift off!
I came to M.D. Anderson Wednesday night last week. We got in very late and my appointment was in the early afternoon. I still had to fill out paperwork and while trying to eat some breakfast felt incredibly ill. I had to go back up to the hotel room and while trying to fill out the paperwork kept getting nauseous and finally threw up. I immediately felt better. I couldn't figure out if it was something I ate (never finished breakfast though) or nerves. David swears it was nerves. I was pretty nervous about the appointment but I've never thrown up from anxiety before...
I've been reading several books lately. I just finished "The Shack" by W.M Young and have started reading Pema Chodron's "The Places that Scare You: A Guide to Fearlessness in Difficult Times". I've also started doing home based yoga with a wonderful Kundalini teacher, Andrea Brook, (yogagirl.com) and am starting to feel more grounded. These books, the yoga practice and the Shaman sessions seem to have commingled themes...they all are pointing to me in the direction that I need to listen to my body. I need to meditate and concentrate on my breath. On the present moment. On my feelings, emotions and bodily messages. I think I am starting to break through and be better about this so it seemed a cosmic wake up call that I couldn't even recognize how anxious I was and understand that it could be the cause of my "selling buicks" before the appointment...
Any who....I had a good appointment with Dr. Stacy Moulder, who, thanks to Dr. Pittman, I had googled and got to know her over youtube and various articles she has published. She is quite accomplished and further affirmed my belief that M.D. Anderson is on the cutting edge of cancer research. I was excited to meet her and discuss treatment plans.
The Breast Center at M.D. is a finely-tuned, well-oiled behemoth of a machine. They are not fooling around and everything is efficient, timely, and organized without feeling too sterile, even though they treat in the clinical setting. Dr. Moulder was uber smart and she was very caring to boot. I didn't come prepared with a list of 20 questions (looking back maybe I should have) because I wanted to just get a general gut feeling of the institution and the doctors. Sometimes (ha ha) I tend to over complicate things and I wanted to try to keep this appointment simple.
Dr. Moulder completed her physical exam and didn't notice anything out of the ordinary. Her plan is to take Xeloda (using the readjusting protocol by Memorial Sloan Kettering) for one week on, one week off and start right away. I have to repeat my CT scan and given the odd headache and vomiting she also wants me to get a brain MRI. She says she is being cautious since I've never had something like that before and I get it... It's always good to rule things out otherwise I'll think every little headache, etc. is possibly the cancer spreading to the brain. The brain, as she said, is called a "sanctuary" sight since it is not able to be targeted by chemotherapy agents.
She also wants me to repeat the liver biopsy so that I can get all the genetic profiling and full panel gene array information (which is what I figured) so that if we learn of any genes being over-expressed my treatment plan can be targeted as such; which also opens the possibility of various clinical trials. The biopsy is part of three different clinical trials and it is paid for by the researchers. I signed up since I will get all the information for my medical records once the results are complete AND I am entered into their database for new clinical trials that arise in the future. At the end of the appointment that was it. I gave some blood and had a chest x-ray completed and then it was done. David and I went to dinner and then took the first available flight home in the AM to spend the weekend at home.
We flew back to Houston early this morning so that I can have my CT scan, Brain MRI and, pending results from the scans, complete a repeat liver biopsy later this week.
I need to mention that I took a valium before I left the hotel room so I would be nice and relaxed during the scans. And I am nice and relaxed. I'm drinking my Barium drink (banana flavor - seems the easiest for me to tolerate) and the IV was actually uneventful (Thank the Lord). Now I'm just waiting to go in. I'm not thinking totally clearly since I'm so chill...
The past few weeks have not been so relaxing, it's mostly been a race to get Leo into the right hands for helping him to walk. He is not a client of Westside Regional Center. He completed a vision screening there which led us to take him to see a pediatric opthamologist, and he was diagnosed with Amblyopia and started wearing glasses. I try to avoid stress but this whole process has been extremely stressful for me. I kind of manage my care second to his, and in my opinion that is they way it needs to be right now. The glasses are an ongoing battle; for the most part he keeps them on and doesn't seem to bothered with him that is until he is eating, or gets tired or decides he wants to take them off for no apparent reason at all...but he's been a trooper. And he looks adorable! Kids are so resilient, they get used to things very quickly. He has also been evaluated by an occupational therapist, had his follow up with the pediatric orthopedic surgeon, and met with the WRC's pediatric neurologist. At that being said, he has been making strides in his speech and seems to be getting stronger every day. He still is only cruising, standing for short times solo and only taking a few steps but the physical therapist and the orthopedic surgeon both recommend orthotics. I am still unsure but I think the may have Leo wear something called AFOS which are ankle braces that fit in shoes and provide full ankle support. Precious little guy, all this is happening when he is also hitting the terrible twos - when he wants to be in control of everything yet really is in control of nothing (aka temper tantrums are starting)... Oh but spending all this time one on one with him is fun and he is really becoming such a momma's boy. I love it. The kids really are starting to play together nicer and it seems to be getting easier (at times).
I want to acknowledge that two other people, my grandma Myrna and my friend Burton are also getting scans today. I am praying for GOOD news all around!!!
I've been reading several books lately. I just finished "The Shack" by W.M Young and have started reading Pema Chodron's "The Places that Scare You: A Guide to Fearlessness in Difficult Times". I've also started doing home based yoga with a wonderful Kundalini teacher, Andrea Brook, (yogagirl.com) and am starting to feel more grounded. These books, the yoga practice and the Shaman sessions seem to have commingled themes...they all are pointing to me in the direction that I need to listen to my body. I need to meditate and concentrate on my breath. On the present moment. On my feelings, emotions and bodily messages. I think I am starting to break through and be better about this so it seemed a cosmic wake up call that I couldn't even recognize how anxious I was and understand that it could be the cause of my "selling buicks" before the appointment...
Any who....I had a good appointment with Dr. Stacy Moulder, who, thanks to Dr. Pittman, I had googled and got to know her over youtube and various articles she has published. She is quite accomplished and further affirmed my belief that M.D. Anderson is on the cutting edge of cancer research. I was excited to meet her and discuss treatment plans.
The Breast Center at M.D. is a finely-tuned, well-oiled behemoth of a machine. They are not fooling around and everything is efficient, timely, and organized without feeling too sterile, even though they treat in the clinical setting. Dr. Moulder was uber smart and she was very caring to boot. I didn't come prepared with a list of 20 questions (looking back maybe I should have) because I wanted to just get a general gut feeling of the institution and the doctors. Sometimes (ha ha) I tend to over complicate things and I wanted to try to keep this appointment simple.
Dr. Moulder completed her physical exam and didn't notice anything out of the ordinary. Her plan is to take Xeloda (using the readjusting protocol by Memorial Sloan Kettering) for one week on, one week off and start right away. I have to repeat my CT scan and given the odd headache and vomiting she also wants me to get a brain MRI. She says she is being cautious since I've never had something like that before and I get it... It's always good to rule things out otherwise I'll think every little headache, etc. is possibly the cancer spreading to the brain. The brain, as she said, is called a "sanctuary" sight since it is not able to be targeted by chemotherapy agents.
She also wants me to repeat the liver biopsy so that I can get all the genetic profiling and full panel gene array information (which is what I figured) so that if we learn of any genes being over-expressed my treatment plan can be targeted as such; which also opens the possibility of various clinical trials. The biopsy is part of three different clinical trials and it is paid for by the researchers. I signed up since I will get all the information for my medical records once the results are complete AND I am entered into their database for new clinical trials that arise in the future. At the end of the appointment that was it. I gave some blood and had a chest x-ray completed and then it was done. David and I went to dinner and then took the first available flight home in the AM to spend the weekend at home.
We flew back to Houston early this morning so that I can have my CT scan, Brain MRI and, pending results from the scans, complete a repeat liver biopsy later this week.
I need to mention that I took a valium before I left the hotel room so I would be nice and relaxed during the scans. And I am nice and relaxed. I'm drinking my Barium drink (banana flavor - seems the easiest for me to tolerate) and the IV was actually uneventful (Thank the Lord). Now I'm just waiting to go in. I'm not thinking totally clearly since I'm so chill...
The past few weeks have not been so relaxing, it's mostly been a race to get Leo into the right hands for helping him to walk. He is not a client of Westside Regional Center. He completed a vision screening there which led us to take him to see a pediatric opthamologist, and he was diagnosed with Amblyopia and started wearing glasses. I try to avoid stress but this whole process has been extremely stressful for me. I kind of manage my care second to his, and in my opinion that is they way it needs to be right now. The glasses are an ongoing battle; for the most part he keeps them on and doesn't seem to bothered with him that is until he is eating, or gets tired or decides he wants to take them off for no apparent reason at all...but he's been a trooper. And he looks adorable! Kids are so resilient, they get used to things very quickly. He has also been evaluated by an occupational therapist, had his follow up with the pediatric orthopedic surgeon, and met with the WRC's pediatric neurologist. At that being said, he has been making strides in his speech and seems to be getting stronger every day. He still is only cruising, standing for short times solo and only taking a few steps but the physical therapist and the orthopedic surgeon both recommend orthotics. I am still unsure but I think the may have Leo wear something called AFOS which are ankle braces that fit in shoes and provide full ankle support. Precious little guy, all this is happening when he is also hitting the terrible twos - when he wants to be in control of everything yet really is in control of nothing (aka temper tantrums are starting)... Oh but spending all this time one on one with him is fun and he is really becoming such a momma's boy. I love it. The kids really are starting to play together nicer and it seems to be getting easier (at times).
I want to acknowledge that two other people, my grandma Myrna and my friend Burton are also getting scans today. I am praying for GOOD news all around!!!
Monday, November 12, 2012
Cleaning up shop
This is a two post kind of day. First I wanted to memorialize the Spirit of Hope luncheon (see previous post) and now I'm going to update on the other stuff going on.
1) Finally got my appointment with MD Anderson after extensive follow up with Dr. McAndrew's office. Be your own advocate in your medical care. Medical professionals are busy but the squeaky wheel will get the oil...and now is the perfect time to be a well-oiled wheel.
2) Leo got his case taken on by the Westside Regional Center (WRC). The WRC is a social service that can provide in home physical, speech, or occupational therapy to qualifying kids. Leo is 23 months and still not walking on his own and that qualifies him. He is very close. He stands on his own. He'll take some steps but won't do much without being pushed. I know that early intervention is key in an developmental delay so he had already been doing physical therapy two times a week. Those session were only half hour sessions and the developmental pediatrician recommended that he be in at least three hours a week and one of the hours be at a gym for occupational therapy. He is diagnosed with benign (a word I like) congenital (born with it) hypotonia (low muscle tone) and he will outgrow this in time with assistance. His speech is affected by the low muscle tone as well so he will greatly benefit from the speech therapy in addition to the PT and OT. Sure, it makes one more thing to do with all the craziness already going on BUT I am thankful that this is something we can work on and that he can overcome. I am grateful that he can get the help he needs. He's not losing words or regressing physically both of which would be signs of something more severe. He is getting stronger and that is what we want.
My appointment in Houston at MD Anderson is on Thursday, November 29th. They tell you to expect to be there five to seven business days so I think that means I can be there two days then come home for a break to be with the kids and then go back the following week. I still don't know what the treatment plan would be and what it would entail. Staying in Houston for treatment 3 days a week or a week every two weeks or what or what or what. I'll find out when I find out. For now I am focused on accumulating medical records, films, and reports to make sure they have everything they need. They treat in a clinical setting so I will be talking to many MD's and nurses and want to make sure I have all my answers ready.
I am eager to get the therapy started. Abby asked me last night why I was going away in a few weeks and I told her again, "There is something growing in mommy's body that shouldn't be there, called cancer. Mommy is going to see special doctors so they can help mommy get all better". That's enough info for her for right now. Leo will be a bit more difficult since he can't communicate as well. My goal is to keep their routines as normal as possible and have lots of friends and loved ones around so they won't have time to miss me (even though I know they will).
Am I worried? I would say I'm a little worried that this time my body isn't as strong as it was before since it is still recovering from surgeries, radiation and chemotherapy but I'm also not pregnant this time and won't need to give birth in between. I know that the "pre-meds" were so great last time that I didn't have terrible nausea and the steroids allowed me enough energy to come home after Chemo and play with Abby. I remember it was the fatigue that eventually caught up with me. I need to get on a better more consistent exercise plan. I've got my herbs and acupuncture with Dr. Mao which helps too.
I feel like an athlete preparing for an event. The stronger I can be the better I will be able to handle the fight.
Game on.
1) Finally got my appointment with MD Anderson after extensive follow up with Dr. McAndrew's office. Be your own advocate in your medical care. Medical professionals are busy but the squeaky wheel will get the oil...and now is the perfect time to be a well-oiled wheel.
2) Leo got his case taken on by the Westside Regional Center (WRC). The WRC is a social service that can provide in home physical, speech, or occupational therapy to qualifying kids. Leo is 23 months and still not walking on his own and that qualifies him. He is very close. He stands on his own. He'll take some steps but won't do much without being pushed. I know that early intervention is key in an developmental delay so he had already been doing physical therapy two times a week. Those session were only half hour sessions and the developmental pediatrician recommended that he be in at least three hours a week and one of the hours be at a gym for occupational therapy. He is diagnosed with benign (a word I like) congenital (born with it) hypotonia (low muscle tone) and he will outgrow this in time with assistance. His speech is affected by the low muscle tone as well so he will greatly benefit from the speech therapy in addition to the PT and OT. Sure, it makes one more thing to do with all the craziness already going on BUT I am thankful that this is something we can work on and that he can overcome. I am grateful that he can get the help he needs. He's not losing words or regressing physically both of which would be signs of something more severe. He is getting stronger and that is what we want.
My appointment in Houston at MD Anderson is on Thursday, November 29th. They tell you to expect to be there five to seven business days so I think that means I can be there two days then come home for a break to be with the kids and then go back the following week. I still don't know what the treatment plan would be and what it would entail. Staying in Houston for treatment 3 days a week or a week every two weeks or what or what or what. I'll find out when I find out. For now I am focused on accumulating medical records, films, and reports to make sure they have everything they need. They treat in a clinical setting so I will be talking to many MD's and nurses and want to make sure I have all my answers ready.
I am eager to get the therapy started. Abby asked me last night why I was going away in a few weeks and I told her again, "There is something growing in mommy's body that shouldn't be there, called cancer. Mommy is going to see special doctors so they can help mommy get all better". That's enough info for her for right now. Leo will be a bit more difficult since he can't communicate as well. My goal is to keep their routines as normal as possible and have lots of friends and loved ones around so they won't have time to miss me (even though I know they will).
Am I worried? I would say I'm a little worried that this time my body isn't as strong as it was before since it is still recovering from surgeries, radiation and chemotherapy but I'm also not pregnant this time and won't need to give birth in between. I know that the "pre-meds" were so great last time that I didn't have terrible nausea and the steroids allowed me enough energy to come home after Chemo and play with Abby. I remember it was the fatigue that eventually caught up with me. I need to get on a better more consistent exercise plan. I've got my herbs and acupuncture with Dr. Mao which helps too.
I feel like an athlete preparing for an event. The stronger I can be the better I will be able to handle the fight.
Game on.
H O P E. It's not really a four letter word.
I have been remiss in writing about the Spirit of Hope luncheon. I can't say the word hope and not think of Sarah Palin saying "How's that hopey changey stuff workin' out for ya'"? Oyyyyy. I can say that despite having a recurrence I still feel that walking a life filled with HOPE is going well for me. Thank you. My favorite sign at the Avon Walk last year and this year reads "Once you choose HOPE anything is possible"...
The luncheon was amazing. It was truly a magical day for me. I got to get all dolled up, have someone do my make-up, curl my hair, wore a dress I haven't had an excuse to wear yet that was sitting in my closet feeling lonely, and got new jewelry and shoes to boot. I felt like a pageant queen all over again. Some things never change! I am laughing because I think my hair is starting to look pretty cute at this length. Maybe I can get Piny to re-do my wig to something a little more like what I have now...
There were so many people I loved and cared about at the event. Even my grandma who doesn't venture out much came up and it made my day. There is no richer feeling than knowing that you are loved and cared for by people you love and care about and then some. I secretly wished Abby could have been there to see me get up and speak in front of an audience but she wouldn't have sat there long enough to see it I'm sure. She was a little sad to see my go and kept asking questions about why I was so dressed up and where I was going and why couldn't she go? I really heart her.
THANK YOU to everyone who attended and contributed to the event. I know the day wasn't really about ME but I felt like it was. I enjoyed it immensely, thoroughly, and fully. Thank you, thank you.
The boutique ahead of time was great but I didn't have time to get anything in between chatting with people and having my photo taken. Ha ha. Can you imagine? It was a blast. One random lady came up to me and said "Are you a model here? You must be a model!" and I could not wipe the huge smile off my face as I informed her that I was not a model but an award recipient. Did I already say "best day ever"???
My good friend Vizhier, whom I have always admired as a public speaker, introduced me onto the stage. I will point out that Vizhier likes to politely embellish things... I love you Vizhier! I will post her speech here and my speech following. It was such a wonderful day. As soon as the even was over it was a race home to change and then pick up Abby from school. Mom duties!!
Here is my speech:
Life is so much more than our bad days. But those bad days help up truly appreciate the good ones. Yin and Yang. Balance. I search for balance every day. It definitely is not easy. Life is a process. We have a choice.
The luncheon was amazing. It was truly a magical day for me. I got to get all dolled up, have someone do my make-up, curl my hair, wore a dress I haven't had an excuse to wear yet that was sitting in my closet feeling lonely, and got new jewelry and shoes to boot. I felt like a pageant queen all over again. Some things never change! I am laughing because I think my hair is starting to look pretty cute at this length. Maybe I can get Piny to re-do my wig to something a little more like what I have now...
There were so many people I loved and cared about at the event. Even my grandma who doesn't venture out much came up and it made my day. There is no richer feeling than knowing that you are loved and cared for by people you love and care about and then some. I secretly wished Abby could have been there to see me get up and speak in front of an audience but she wouldn't have sat there long enough to see it I'm sure. She was a little sad to see my go and kept asking questions about why I was so dressed up and where I was going and why couldn't she go? I really heart her.
THANK YOU to everyone who attended and contributed to the event. I know the day wasn't really about ME but I felt like it was. I enjoyed it immensely, thoroughly, and fully. Thank you, thank you.
The boutique ahead of time was great but I didn't have time to get anything in between chatting with people and having my photo taken. Ha ha. Can you imagine? It was a blast. One random lady came up to me and said "Are you a model here? You must be a model!" and I could not wipe the huge smile off my face as I informed her that I was not a model but an award recipient. Did I already say "best day ever"???
My good friend Vizhier, whom I have always admired as a public speaker, introduced me onto the stage. I will point out that Vizhier likes to politely embellish things... I love you Vizhier! I will post her speech here and my speech following. It was such a wonderful day. As soon as the even was over it was a race home to change and then pick up Abby from school. Mom duties!!
VIZHIER INTRO SPEECH:
Jessica and I have been friends for over a decade. We met when Jessica was in her twenties and I was not. Life seemed a lot simpler back then.
I remember distinctly the time, early in our friendship, we were just getting to know each other. We were to meet at Clementine Cafe for lunch. I sat waiting at a table, the room was loud and crowded.
In comes Jessica wearing jodphurs, high boots, a tweed jacket and cap. It was as if Grace Kelly had just walked in from a horseback ride in the country. I think the entire room stopped to look. She took everyone’s breath away.
At that point I thought to myself, My friend looks is like goddess, a goddess having lunch among mere mortals. My ego is forever humbled.
Of course, there is more to Jessica than meets the eye. She is quite accomplished: a beauty pageant winner, Berkeley graduate, a career in private equity. She is a very thoughtful person, she is shockingly competitive, she is caring, and surprisingly funny.
I have witnessed many joyful milestones in Jessica’s life. – Her romantic marriage to David, the birth of their twins Abby and Ben, the birth of Leo. The kids birthdays..
……
I have witnessed the other events in Jessica’s life, some too painful to discuss.
But these are the moments that reveal to me the measure of her character…
I have seen Jessica, accept with such grace, the hardest tragedy a parent could bear: the loss of a child.
And yet, this was just the beginning.
In Sept. 2010, when Jessica was 6 months pregnant with Leo, she was diagnosed with breast cancer. We were all in shock. But for Jess, this was no time for pity.
She and David gathered all their close friends and family around at the Berman home to discuss the diagnosis and work out strategy for the rough months ahead. It was all hands on deck.
At this point, Jess had already drawn up plans to change her life, her eating habits, her family time. She had already determined her medical team, consulted with experts in traditional and alternative medicine; she had already sought advice from other cancer survivors. Just weeks after her diagnosis, Jess had her battle plan to fight cancer.
This fight in her, this inner strength, this beligerance against insurmountable odds surprised me. I realized she’s had this with her her entire life. She has always believed she could move mountains. And she has.
And a year after that evening. That intense year during in which her body was put through rounds of chemotherapy, the birth of her son Leo, a grueling and complicated mastectomy, followed by radiation therapy. After her spirit and resolve were tested over and over again…
After her treatment ended and she got the all clear, Jessica decided that it was not enough to have fought and won this round with cancer.
And so she enlisted me, her sister Lindsey, and friend Ashley in the Avon Walk for Breast Cancer because she wanted to give hope to other women that had been affected by this disease.
……..
I remember distinctly a moment during the walk.. through my numbing pain at mile 22, me sunburned, exhausted, exasperated (that I hadn’t lost any weight after walking 22 miles).
I saw Jessica 100 yards ahead, walking briskly, happily and with purpose. And I thought to myself
I was right all these years, she IS a goddess. And my soul is forever inspired.
Thank you for allowing me to share these memories with you.
And now, I present the Spirit of Hope Award to my good friend, Jessica Berman.
Here is my speech:
Thank you so much Vizhier.
I am humbled to be here and accept the Spirit of Hope award. Thank you to the Magnolia Council and particularly Suzann Levine for this honor.
I’ve faced many challenges in my life, more than most, yet I continue to persevere -- so I am honored to be here to talk about HOPE.
I move forward because I have strong support from my family, my husband David and our kids Abby and Leo, and a growing community of friends and other survivors.
I know I am not the only one who has experienced adversity...the loss of a loved one...or aggressive treatment for cancer. Yet, people who know me or hear my story remark that I am so STRONG and they "have no idea how I do it”...
But I feel that what I am doing is what each of you might do too. You don’t know how strong you are until you are truly tested. You too would have hope about your future.
I never really examined the word Hope so I decided to look it up. Hope is "to cherish a desire with anticipation"; or "to expect with confidence".
Dr. Barbara Fredrickson, wrote that hope "comes into play when our circumstances are dire" and when "there’s considerable uncertainty about how things will turn out". She states that "hope literally opens us up...and removes the blinders of fear and despair and allows us to see the big picture" and have "belief in a better future".
I believe in the work that Tower Cancer Research Foundation does. I hope for a better future for myself and other cancer patients.
I also believe that the difficulties in my life strengthen me and help me see the big picture.
- I focus on what is truly important.
- I acknowledge the blessings in my life and
- I am grateful.
- I take pause in the present and am aware of special moments.
- I am learning to be my own advocate.
- I am working to be less self-critical and think positively regardless of circumstance.
I think that is something we can all strive for.
I would like to alter the definition of hope to be “to cherish a desire with anticipation even if you know that the outcome may not be what you want” -- what good does it do you to worry in the present over things that you can’t control?” I don’t think it makes you foolish to hope when things are dire. I think that is when you hope more.
So many things in life are out of our control. I got news recently that my cancer has returned. And I was in disbelief. But I’ve learned that the only thing we can control is our reaction.
So I choose to move forward and I do so with HOPE.
I know that I am not alone in my fight. I have an amazing medical team led by Philomena McAndrew at Tower Oncology, whom I’d like to recognize for her tireless devotion to her patients. I am comforted to know that many people live for years and years with and often beat metastatic disease. I plan to be one of them.
I would like to accept this award on behalf of all the other survivors, like me, who rely on each other every day for support. They motivate me with their strength and courage. We inspire hope in each other and those that surround us.
Thank you very much.
Life is so much more than our bad days. But those bad days help up truly appreciate the good ones. Yin and Yang. Balance. I search for balance every day. It definitely is not easy. Life is a process. We have a choice.
Thursday, November 1, 2012
Results...or partly there of
In U.S. News I am saddened for the loss of life and the people devastated by Hurricane Sandy on the East Coast. I am even more devastated by the family whose two children were victims of a troubled nanny who fell off the deep end. Both of these things cause pain in my heart but keep my own struggles in perspective. I am going to just keep on moving forward focusing on those things I can do to help myself.
When I I had my liver biopsy at Cedars, the doctor got four samples, "three plus an extra for Cedars to keep" he said. The samples were sent to a lab at Tower Cancer Research Foundation for analysis. Based on all the articles I have been reading I insisted that a full work up be done for prognostic markers, gene profiling, chemistry, etc. So I have been patiently, or not so patiently waiting for two and a half weeks (!!!!). I had called Dr. McAndrew Friday but didn't get a return call until yesterday morning after I emailed her directly asking WHAT WAS UP?!?!?!?
Philomena told me that there were some problems getting all the work ups because the Lab didn't have enough sample material to complete the gene profiling. SHUT THE FRONT DOOR!!! Yes, Cedars took four samples but used extras for their own scientific analysis. How can they do that? I was in too much shock to even ask. Not sure if I will repeat the liver biopsy and if I do I will probably not go to Cedars or use the TCRF lab. Not sure who is at fault there. I am under the impression that the genetic profiling determines what genes, if any, are over expressed in the cancer and could therefore allow me to get into specific clinical trials so I am anxious to have that analysis done. I read a very interesting article yesterday about new classifications of breast cancer and so I'm also curious what type I have in this new outlook. I believe I fall under the Luminal B category.
Article - Genetic Studies Identifies Four Main Types of Breast Cancer
Another interesting research publication I found - Oral Presentations from the Madrid Breast Cancer Conference - here I am interested in 012, 013, 014 and 015
An incredible amount of research is being done and I want to be a part of it. I also want to benefit from it too, of course. I do not want to go with "standard of care". The goal is this - to have the most aggressive treatment available with the least amount of side effects.
The only thing we do know from the biopsy is that the tumor markers have not changed. The problem is that my type of cancer is supposed to be responsive to anti-hormonal therapy but clearly it wasn't. According to the new classifications I now know that I am in the Luminal B group and therefore my cancer was not as responsive and more likely to recur. What I am not sure of is how my treatment protocol would have been or could have been different. That is the key question.
I am on a VIP referral list at MD Anderson and I just started the intake process to become a new patient. I am leaning more and more towards that even though I love Dr. McAndrew. It is likely that I will come up with a treatment plan collectively and go back and forth between the two for treatment. I already talked about it with Philomena and she's supportive and is already gathering reports to be helpful. I am meeting with her Friday afternoon to discuss what she recommends and a plan to move forward.
I had another appointment with the Shaman, Lena, and I found it once again very helpful. She suggested that I consider cancer my teacher. She said the best teachers are often the most ruthless. The harder the challenge the more we can learn. SO...going forward I am going to stop calling cancer by it's diseased name. Instead I am going to call it "teacher". In the morning I am going to ask - "Teacher, what do you want me to learn today?" and I am going to listen. I am going to take a pause and really try to understand what the lesson is for me each day and do it.
Keep Calm and Carry On!
When I I had my liver biopsy at Cedars, the doctor got four samples, "three plus an extra for Cedars to keep" he said. The samples were sent to a lab at Tower Cancer Research Foundation for analysis. Based on all the articles I have been reading I insisted that a full work up be done for prognostic markers, gene profiling, chemistry, etc. So I have been patiently, or not so patiently waiting for two and a half weeks (!!!!). I had called Dr. McAndrew Friday but didn't get a return call until yesterday morning after I emailed her directly asking WHAT WAS UP?!?!?!?
Philomena told me that there were some problems getting all the work ups because the Lab didn't have enough sample material to complete the gene profiling. SHUT THE FRONT DOOR!!! Yes, Cedars took four samples but used extras for their own scientific analysis. How can they do that? I was in too much shock to even ask. Not sure if I will repeat the liver biopsy and if I do I will probably not go to Cedars or use the TCRF lab. Not sure who is at fault there. I am under the impression that the genetic profiling determines what genes, if any, are over expressed in the cancer and could therefore allow me to get into specific clinical trials so I am anxious to have that analysis done. I read a very interesting article yesterday about new classifications of breast cancer and so I'm also curious what type I have in this new outlook. I believe I fall under the Luminal B category.
Article - Genetic Studies Identifies Four Main Types of Breast Cancer
Another interesting research publication I found - Oral Presentations from the Madrid Breast Cancer Conference - here I am interested in 012, 013, 014 and 015
An incredible amount of research is being done and I want to be a part of it. I also want to benefit from it too, of course. I do not want to go with "standard of care". The goal is this - to have the most aggressive treatment available with the least amount of side effects.
The only thing we do know from the biopsy is that the tumor markers have not changed. The problem is that my type of cancer is supposed to be responsive to anti-hormonal therapy but clearly it wasn't. According to the new classifications I now know that I am in the Luminal B group and therefore my cancer was not as responsive and more likely to recur. What I am not sure of is how my treatment protocol would have been or could have been different. That is the key question.
I am on a VIP referral list at MD Anderson and I just started the intake process to become a new patient. I am leaning more and more towards that even though I love Dr. McAndrew. It is likely that I will come up with a treatment plan collectively and go back and forth between the two for treatment. I already talked about it with Philomena and she's supportive and is already gathering reports to be helpful. I am meeting with her Friday afternoon to discuss what she recommends and a plan to move forward.
I had another appointment with the Shaman, Lena, and I found it once again very helpful. She suggested that I consider cancer my teacher. She said the best teachers are often the most ruthless. The harder the challenge the more we can learn. SO...going forward I am going to stop calling cancer by it's diseased name. Instead I am going to call it "teacher". In the morning I am going to ask - "Teacher, what do you want me to learn today?" and I am going to listen. I am going to take a pause and really try to understand what the lesson is for me each day and do it.
Keep Calm and Carry On!
Monday, October 29, 2012
Still waiting...
I am still waiting for results from the liver biopsy.... I called Dr. Mcandrew Friday -- I suppose I was fine putting it off all week so as not to seem too anxious and frankly sometimes ignorance is bliss -- but her nurse said she was at a conference in Washington and she would check for results and have her call me if anything was available. It is now 9:30PM on Monday night and I still don't have an answer.
I am now thinking that I would like to hop on a plane and go to MD Anderson to have another liver biopsy so they can analyze the sample themselves and come up with a treatment plan. I know that my hair is finally growing back and I like my "cute" short 'do but it is time to start getting this cancer out of me. It is time to get a treatment protocol in place. It is time to start making me sick so I can get better.
Waiting is infuriating at times. Thankfully it isn't too hard to wait when you had a 24-hour flu, one of your kids is sick and the other one is coming down with something too. Life in the fast lane is so glamorous!
Tonight I started reading a book called "After Breast Cancer: A Common-Sense Guide to Life After Treatment" by Hester Hill Schnipper and it is fabulous. It was a book I ordered after radiation when I was feeling so lost and needed help but didn't know where to turn. I ordered a few books off Amazon at the time and this was one of them. The one I started reading right away from that shipment was called "I am Not My Breast Cancer" by Ruth Peltason and that helped me at the time. I started getting stronger and wanted to stop identifying myself as a cancer patient so I apparently put all things "cancer" aside. This new book I cracked open tonight explains something I have been feeling but didn't understand -- When you are in active treatment you are so overwhelmed by the physical demands that you have little energy for the psychological issues that come with a breast cancer diagnosis. AND that is why a year coming out of treatment I still felt very lost but tried to busy myself with the mommy routine, the life mundane, attempting a social life, trying to get things back to "normal". I am still trying to process all that I have been through, all that I felt at the time and currently feel in the aftermath, and now dealing with a recurrence, which was my greatest fear realized.
The thought that I am going to have to go through it all over again doesn't phase me as much this time. As a friend of mine texted me when I told her about the cancer coming back she said "they will ZAP it again". At least this time I am not 6 months pregnant or require a c-section during my treatment. I know my body is still recovering from the treatment I had not so long ago but I feel stronger than I have been and I think that should count for something.
Tonight as I soaked in the epsom salt bath I looked at my body and I looked at all the scars and I was proud of myself. It was painful to think of each scar, where it came from and what the recovery was like. (Tears are streaming down my cheeks as I type this)... I am like a warrior that has been to battle all too often. One port, two c-sections, a mastectomy with reconstruction, implant replacement, reduction and lift on the right breast, fat grafting, and I'm still not done. It is so easy to look at myself and think Frankenstein freak show. It is harder to look at myself with LOVE and COMPASSION. I survived all that and I will survive even more. I should be so proud. Why do I judge myself so harshly? Get out of here negativity. Leave. GO AWAY. Good bye. I am done with you. How can I look at myself with anything but awe? G-d, what I have been through!!!
Jessica, you can do this. You will do this.
I am now thinking that I would like to hop on a plane and go to MD Anderson to have another liver biopsy so they can analyze the sample themselves and come up with a treatment plan. I know that my hair is finally growing back and I like my "cute" short 'do but it is time to start getting this cancer out of me. It is time to get a treatment protocol in place. It is time to start making me sick so I can get better.
Waiting is infuriating at times. Thankfully it isn't too hard to wait when you had a 24-hour flu, one of your kids is sick and the other one is coming down with something too. Life in the fast lane is so glamorous!
Tonight I started reading a book called "After Breast Cancer: A Common-Sense Guide to Life After Treatment" by Hester Hill Schnipper and it is fabulous. It was a book I ordered after radiation when I was feeling so lost and needed help but didn't know where to turn. I ordered a few books off Amazon at the time and this was one of them. The one I started reading right away from that shipment was called "I am Not My Breast Cancer" by Ruth Peltason and that helped me at the time. I started getting stronger and wanted to stop identifying myself as a cancer patient so I apparently put all things "cancer" aside. This new book I cracked open tonight explains something I have been feeling but didn't understand -- When you are in active treatment you are so overwhelmed by the physical demands that you have little energy for the psychological issues that come with a breast cancer diagnosis. AND that is why a year coming out of treatment I still felt very lost but tried to busy myself with the mommy routine, the life mundane, attempting a social life, trying to get things back to "normal". I am still trying to process all that I have been through, all that I felt at the time and currently feel in the aftermath, and now dealing with a recurrence, which was my greatest fear realized.
The thought that I am going to have to go through it all over again doesn't phase me as much this time. As a friend of mine texted me when I told her about the cancer coming back she said "they will ZAP it again". At least this time I am not 6 months pregnant or require a c-section during my treatment. I know my body is still recovering from the treatment I had not so long ago but I feel stronger than I have been and I think that should count for something.
Tonight as I soaked in the epsom salt bath I looked at my body and I looked at all the scars and I was proud of myself. It was painful to think of each scar, where it came from and what the recovery was like. (Tears are streaming down my cheeks as I type this)... I am like a warrior that has been to battle all too often. One port, two c-sections, a mastectomy with reconstruction, implant replacement, reduction and lift on the right breast, fat grafting, and I'm still not done. It is so easy to look at myself and think Frankenstein freak show. It is harder to look at myself with LOVE and COMPASSION. I survived all that and I will survive even more. I should be so proud. Why do I judge myself so harshly? Get out of here negativity. Leave. GO AWAY. Good bye. I am done with you. How can I look at myself with anything but awe? G-d, what I have been through!!!
Jessica, you can do this. You will do this.
Wednesday, October 17, 2012
Oops...I skipped a post
I skipped a kind of important post. After the bone scan, I did have the PET/CT scan and Breast MRI. This is what I posted on Facebook that was the missing link between the past two posts. There are a couple lesions on my liver, some spots on my bones and abdominal lymph nodes. I actually thought for some reason that sitting down with the PET/CT report and my anatomy chart so that I could pinpoint all the spots that were identified as "highly metabolic activity" areas would be a good idea so that I could be educated about it. Well, what the fuck? That just made me more depressed and angry. It was then that I realized like Dr. Mao told me - the report, it doesn't matter. It really doesn't. Time to move on, time to live life in the present, time to hug and kiss my kiddos, time to dance all night with my husband, time to empower myself to fight, fight, fight. It is time to be grateful. It is time to be thankful. I am so blessed. May I be filled with loving kindness, may I live a life of ease, may I be well, may I be happy.
Utterly devastated to report that the PET/CT shows that the cancer has spread to small areas of my liver, bones and lymph. I will post here what I told my family earlier - "many people live for years with metastatic disease, I am going to give it all I've got and then some." I feel healthy right now and I plan to do all I can to stay that way. Thank you for all the love and support. Means a ton! I will update my blog later when I can clear my head.
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