Wow… I have an overwhelming sense of emotion when I just read through my past blogs. I can’t believe that is has been since September when I posted any thoughts last about my health. I hear from friends and loved ones, “you haven’t updated your blog in a while”. I agree with them, saying to myself that I will get to it, but I never do….So much on my mind.
I wake up each morning knowing that I have my disease. I find it extremely tough to get out of bed, shower and get ready for the day. In so many ways I feel as though I am living this pretend life, that everything is ok and that I don’t live and breathe Cancer every moment of every day. I want to be normal, I want to do what everyone else does, but I find that my body is just not up for it. My girls frequently want to do dinner at night after work but I just can’t do it. I feel badly because I know that I miss out on opportunities to share those special moments with them, however I also know that my body just needs to rest. I am in bed by 8:30/9:00pm at night and up again by 6:30am the next day. My body is sore each day. My back aches, my left shoulder hurts, my neck is tender. I have come to know that these “ailments" come with the territory of my disease and are completely normal. Will this be the rest of my life? Will I always be like this?
I spend many weekends with family and friends. I enjoy my wine. I have seen so many wonderful sunsets from the deck of our place as well as a couple at the beach too. I look at those beautiful skies and feel that there is another sense of power which is showing me to be strong and to never give up hope that there will be a cure one day.
On December 14th my twin sister Shira gave birth to Asher Scott Hatton. I was in the delivery room and being there in that moment was something I will never forget. I remember feeling so incredibly happy but at the same time thinking, will I ever have the opportunity to carry a child based on my health? On January 27th my sister-in-law gave birth to Julien Allen Rosenstein. He was in the NICU for over a week and I felt so helpless that he was in there for so long. Good news is that Julien is home now and doing a lot better! Two little nephews in such a short time, I do feel so blessed.
Although I have this sense of happiness for my family, I honestly still wonder if my two little nephews will ever know me as their aunt. Will they ever learn to say my name and allow me to shower them with love or will they only see photographs of an aunt they never knew, who died of this disease. I can’t help but discuss my true emotions here. I don’t always think this way, however I wouldn’t be real, I wouldn’t be me if I didn’t share that these thoughts cross my mind frequently.
Around Christmas time I received a call from Dr. Terpenning saying that my IGA levels dropped to the numbers they were back in August. This news made me feel so happy. Mike and I went to celebrate that night, thinking everything I am doing and with his help of eating right and juicing and being positive and getting my blood tested every six weeks is finally working – is my Cancer going away? Sadly though back in January, my numbers went up again. I felt helpless, I felt disgusted. I felt angry. How can this happen if I am doing everything right? Then I began to think, what is right? Is there really an answer? From what I know now, with this disease, there really is anything that can be done at the moment and there is no answer.
I see people all around me who are healthy. I also think, why do they get to be so lucky? Is the grass really greener? I know they have problems too, but do they live their life thinking that there might be a chance they won’t live, have children and be old enough to see their grandchildren go to college? Ahhhhh.
Dr. Barr wrote me a note sharing that when I am at work and people around me are sick, I will have to wear a mask. I do already wear one when I am on airplanes when I travel to prevent extra germs from spreading into my body. This is really embarrassing but I don't have a choice. My immune system is so compromised that if anyone else is sick, I will get sick -- end of story. A common cold leads to bronchitis, leads to pneumonia, leads to going to a hospital. This is what I need to avoid. I did have bronchitis last month which kept me out of the office for some time. I feel completely frustrated that I have not and will not be able to control this part of my life ever again. It truly is not fun to be sick all the time, but with my Cancer, I will be this way forever. I find myself washing my hands, using anti-bacterial hand sanitizer, never touching doorknobs or even my face. I have to be so careful.
I recently had a second full skeletal survey where they took 20 x-rays of different bones in my body. Results are not in yet but I am hoping there are no holes developing. I will need to do a 24-hour urine collection which will test to see if I have protein coming from my bones as well. I will also need another Bone Marrow Biopsy this Summer. I am really not looking forward to that painful exam, however it is the only way to really tell what the percentage of Cancer cells are in my body.
I saw Dr. Forman again last week. It was the first time after my initial diagnosis. I sadly didn’t see my peacock that I was so wishing to take a picture of to post here. City of Hope still looks the same with many patients walking around with wigs, masks and sad faces. When Dr. Forman saw me, he was pleasantly surprised that I “didn’t look sick”. He thought I was just a caregiver, not an actual patient. When people say to me, “you don’t look sick” or “you do a good job of putting up a front”… it makes me feel so badly. Why does it make me heartbroken? Yes, I wake up every morning, shower, do my hair and make-up and look presentable. I have nothing else to control but the way I look. Inside I am so incredibly ailing. I have Cancer. This is not a joke. I have a horrible disease that has the potential of making me more ill in the months and/or years to come. What other option do I have than to try and be me? I have to put up a front in order to help me be more positive. If I don't look sick, than subconsciously will this help me? Who knows, but I think it's working.
I don’t mean to sound sad or depressed or, or, or… because I am really not like this all the time. I do admit I am discouraged though. I thought that with the power of my mind, I could make this go away. Truth is… I can’t. In time I am hoping that if I continue with my positive spirit that it will help me stable in my disease for years to come.
Talk soon.
Tuesday, February 15, 2011
Monday, September 13, 2010
Moments of Grace – My Aura is Strong
Over the past couple of weeks I have really valued each moment. I know that I have said to never take anything for granted but having the opportunity to really let go and LIVE in the moment has been something I have been trying to do each day. I went to the Malibu Chile Cook-Off Saturday of Labor Day weekend with Mike, Kelli, Greg, and Aaron and Pam (from Vegas). The sun finally came out and it was a fun filled afternoon where I consumed a variety of vegetarian chili options. There was also a fair and Kelli convinced me to get in what I like to call a spinning tea-cup. We were twirling around so fast…. I remember grabbing her arm and screaming in delight. I found myself laughing so hard that tears were falling from my eyes. It felt amazing to have the whirlwind of fear rush through my body and then the laughter overcoming my anxiety. It was also so wonderful to see Aaron and Pam. We hadn’t seem them in a couple of years, so I really enjoyed the time with them. That evening Mike and I had dinner with Kari, Eric and Shelby. It was another opportunity to be with friends and just forget about what is really going on.
I am also finding that I want to walk everywhere. I want to take Ink for hikes (Thank you Coral for reminding me about this!!), I want to walk to the new Trader Joes, I want to walk to the Farmers Market. I don’t care where I walk, but I want to walk. I want to breathe. I want to enjoy the sun and feel the rays against my skin. I want to listen to the waves crashing against the rocks at the beach. I want to hear the traffic and watch the cars go by so quickly. I want to hear laughter, I want to hear water boiling when we make quinoa pasta, I want to snuggle with Ink and watch Mike sleep at night. I never want to take anything for granted again.
I have joined this Listserv: http://www.acor.org/myeloma.html, which I encourage everyone to join who wants to learn more about my disease. After reading so many emails through the listserv I have learned that most survivors struggle to do just that – to survive. Multiple Myeloma is a horrible disease that affects the bodies and bones of patients. The pain that many go through with treatments, broken bones, lesions, etc… is just endless. I sent an email through the website and have had many survivors and caregivers respond to me directly. All individuals have a variety of stories of how they were diagnosed, how they are living their lives, how they want to offer help or know someone who has gone through this disease (caregiver to them). This resource is unexplainable – a place where I can feel comfortable knowing that I have support. It’s like my new tribe. There is sadness however on this listserv too. There are posts where caregivers have lost someone to MM and they want to update everyone that the person who used to send posts is no longer with us.
I have been telling more people that I have Cancer, a couple more people each month actually. I feel completely open about it, in fact when I share the news, I do feel stronger. I don’t want to tell the world yet, but I do want to tell people who I care about. I don’t know if it’s because I feel closer to the people once I tell, but I want them to know what I am going through, and want them to know that I am a fighter. I will not be statistic of someone who has passed away because of this horrible disease. I will be the person that everyone will say that yeah, JMo/Jenny/Jenn has Cancer but she is a warrior through this process and her will to live will overcome any obstacles.
Rosh Hashanah was on Thursday, September 9, 2010 (or 5771). I went to temple with my sister Heather and Mike on Wednesday evening and with my parents on Thursday. I am not a religious person, I always say that I am a laid back Jew, however I really felt the need to go to temple and pray. I saw Barbara Savin earlier in the week who shared that my Aura was incredibly strong. She shared that whatever I am doing, to continue to do it. She even asked me if anything had changed since the previous week and I had mentioned that I am continuing to eat healthy and surround myself with love and white light. I loved hearing her say my Aura was strong because I do admit I have been feeling quite well. Being in temple was just so hard though. I hadn’t been in years and I found that I was overwhelmed with emotions. Heather asked me the night before why I had wanted to go to temple and I replied that I want God to pray for me. I have been wearing my Torah and Yad recently too. I felt wonderful on Thursday night – I slept the best I had slept in weeks.
This past weekend I had dinner with Mike, Heather, Jon and my parents. We ate Brazilian food and I just relaxed. On Saturday Mike and I went to Downtown LA and ate Pho with Teresa. It brought me such happiness to see her. When we sat down, she handed me an envelope. She shared that it was not a big deal but something that she wanted me to have. I opened the envelope and saw a beautiful peacock feather. Teresa said she has peacocks that live all around her neighborhood and she wanted to give it to me. I broke down in tears and it made me feel so loved. People are reading my blog…… We then laughed the night away at Last Comic Standing.
This morning, September 13, 2010 I came into work and saw five more peacock feathers on my desk. I gasped… who would bring me peacock feathers? Kari went to San Francisco this past weekend and brought them back for me. She said the feathers represent my girls here at work (Kari, Colleen, Allison, Shelby and Richard). She also wrote how the feathers carry Spiritual Healing Energy. I went over to her desk and embraced her. Tears came down my cheeks again. How am I so blessed to have such incredible friends? I thank my lucky stars that I surround myself with encouraging energy and positive spirits. The stunning peacock feathers sit on my desk and I will look at them all the time.
I really believe that the precious moments of grace that I live each day will continue to make my aura strong. I do believe that I am incredibly lucky to be who I am and where I am. I love my life. I love the people who encircle me. I surround myself with love and white light and my intention is to be cured of Cancer.
I am lucky to be me.
I am also finding that I want to walk everywhere. I want to take Ink for hikes (Thank you Coral for reminding me about this!!), I want to walk to the new Trader Joes, I want to walk to the Farmers Market. I don’t care where I walk, but I want to walk. I want to breathe. I want to enjoy the sun and feel the rays against my skin. I want to listen to the waves crashing against the rocks at the beach. I want to hear the traffic and watch the cars go by so quickly. I want to hear laughter, I want to hear water boiling when we make quinoa pasta, I want to snuggle with Ink and watch Mike sleep at night. I never want to take anything for granted again.
I have joined this Listserv: http://www.acor.org/myeloma.html, which I encourage everyone to join who wants to learn more about my disease. After reading so many emails through the listserv I have learned that most survivors struggle to do just that – to survive. Multiple Myeloma is a horrible disease that affects the bodies and bones of patients. The pain that many go through with treatments, broken bones, lesions, etc… is just endless. I sent an email through the website and have had many survivors and caregivers respond to me directly. All individuals have a variety of stories of how they were diagnosed, how they are living their lives, how they want to offer help or know someone who has gone through this disease (caregiver to them). This resource is unexplainable – a place where I can feel comfortable knowing that I have support. It’s like my new tribe. There is sadness however on this listserv too. There are posts where caregivers have lost someone to MM and they want to update everyone that the person who used to send posts is no longer with us.
I have been telling more people that I have Cancer, a couple more people each month actually. I feel completely open about it, in fact when I share the news, I do feel stronger. I don’t want to tell the world yet, but I do want to tell people who I care about. I don’t know if it’s because I feel closer to the people once I tell, but I want them to know what I am going through, and want them to know that I am a fighter. I will not be statistic of someone who has passed away because of this horrible disease. I will be the person that everyone will say that yeah, JMo/Jenny/Jenn has Cancer but she is a warrior through this process and her will to live will overcome any obstacles.
Rosh Hashanah was on Thursday, September 9, 2010 (or 5771). I went to temple with my sister Heather and Mike on Wednesday evening and with my parents on Thursday. I am not a religious person, I always say that I am a laid back Jew, however I really felt the need to go to temple and pray. I saw Barbara Savin earlier in the week who shared that my Aura was incredibly strong. She shared that whatever I am doing, to continue to do it. She even asked me if anything had changed since the previous week and I had mentioned that I am continuing to eat healthy and surround myself with love and white light. I loved hearing her say my Aura was strong because I do admit I have been feeling quite well. Being in temple was just so hard though. I hadn’t been in years and I found that I was overwhelmed with emotions. Heather asked me the night before why I had wanted to go to temple and I replied that I want God to pray for me. I have been wearing my Torah and Yad recently too. I felt wonderful on Thursday night – I slept the best I had slept in weeks.
This past weekend I had dinner with Mike, Heather, Jon and my parents. We ate Brazilian food and I just relaxed. On Saturday Mike and I went to Downtown LA and ate Pho with Teresa. It brought me such happiness to see her. When we sat down, she handed me an envelope. She shared that it was not a big deal but something that she wanted me to have. I opened the envelope and saw a beautiful peacock feather. Teresa said she has peacocks that live all around her neighborhood and she wanted to give it to me. I broke down in tears and it made me feel so loved. People are reading my blog…… We then laughed the night away at Last Comic Standing.
This morning, September 13, 2010 I came into work and saw five more peacock feathers on my desk. I gasped… who would bring me peacock feathers? Kari went to San Francisco this past weekend and brought them back for me. She said the feathers represent my girls here at work (Kari, Colleen, Allison, Shelby and Richard). She also wrote how the feathers carry Spiritual Healing Energy. I went over to her desk and embraced her. Tears came down my cheeks again. How am I so blessed to have such incredible friends? I thank my lucky stars that I surround myself with encouraging energy and positive spirits. The stunning peacock feathers sit on my desk and I will look at them all the time.
I really believe that the precious moments of grace that I live each day will continue to make my aura strong. I do believe that I am incredibly lucky to be who I am and where I am. I love my life. I love the people who encircle me. I surround myself with love and white light and my intention is to be cured of Cancer.
I am lucky to be me.
Saturday, August 21, 2010
Brillant Peacock
So... Tuesday, August 17th was the big day. I had to leave work early to drive to City of Hope (COH) in Durate, California. It's on the other side of Pasadena for those of you from the Westside or Valley areas. Drive took over an hour and I was very nervous. I tried to rest in the car, so Mike was behind the wheel. We arrived to acres of gardens with beautiful flowers and trees. Seemed so numbing to be honest as City of Hope is not a beautiful place at all. In fact, as Mike and I were waiting for our appointment, we saw such sadness. The Center is depressing with so many patients coming in and out of there with no hair, in wheelchairs, walking with canes, slowly moving around. I saw a young woman with two children - she had a colorful scarf wrapped around her head. Could that be me one day? Will I ever have children and will I lose my hair?
As I was waiting for my appointment and for my parents to arrive, Mike and I were sitting on a park bench eating our almond butter and banana sandwich on sprouted bread. While we were enjoying every yummy bite, we happened to notice a beautiful peacock stroll past us. The bird actually scared me as it came so very close to where we were sitting and it was rather large. I sent a picture of the bird to Kari and was also texting her, sharing how scared and uncomfortable I was. She told me to stay strong, and put my head and thoughts in Mexico... I did just that.
When I was being checked in, the Nurse gave me a hospital wrist band with a barcode which also had my name and date of birth. It felt so awkward and uncomfortable -- am I really that sick? Do I need to be here? Everyone around me is sick, are they as sick as me? They look sick, I don't look sick.....Why me?
While these thoughts were running through my head, I happened to look outside the Nurse's window to find that the same peacock that was sitting with Mike and I just a moment before, had travelled to the Nurse's office window. The Nurse had shared that COH has only one peacock on campus and it came from a local park. I thought that it was funny that the peacock was right there... staring at us through the window.
First stop after being checked in was meeting with another Nurse who asked me if I was open to being part of a study, where they would take just a sample of my blood as well as tissue and analyze it. This study is only in it's second year, however I agreed to having them monitor my case. I did believe that the Nurse could have done a better job at selling this study -- she was completely out of her element and did not have people-to-people skills. Don't you have to be a people person to be in the medical industry? My parents, Mike and I all laughed. It was good to have a sense of release from my fears for just one moment.
When we finally met with Dr. Steven Forman M.D., F.A.C.P (Chair, Hematology & Hematopoietic Cell Transplantation, Francis and Kathleen McNamara Distinguished Chair in Hematology and Hematopoietic Cell Transplantation, Co-leader, Hematologic Malignancies Program, Comprehensive Cancer Center Clinical Director, Cancer Immunotherapeutics & Tumor Immunology, Professor, Medical Oncology & Therapeutics Research, Visiting Associate, Chemical Engineering, California Institute of Technology, Professor, Hematology & Hematopoietic Cell Transplantation)
YEAH, HE'S the BIG BOSS ON CAMPUS... I felt at ease.
He immediately made me feel comfortable with his calming voice and caring spirit. He shared that he has been watching my case for months via Dr. Terpenning and had expected me to visit him. He was open to many questions from my parents, from Mike and of course from me. I noticed that Dr. Forman was observing me, from my eyes, to my body language to how I was sitting in my chair. He shared that he finds it is important to not only listen to what patients are verbally saying, but also observing patients through other ways. He feels this also can show how patients really feel.
Dr. Forman has a team of experts underneath him, who will all analyze my records to determine my health.
Notes regarding my visit are listed below:
* Treatment has changed so much in the last 20 years, but most recently in the last 5-10 years. He believes like Dr. Terpenning that immediate treatment is not necessary. He is hoping that in 10 more years, I won't even need a stem-cell transplant and there would be a drug that could cure me. Every December, there is a Hematology meeting where the latest and greatest results of drugs, treatments, etc.. are released to the public. Since Dr. Forman is the head, he is the first to learn about what has been developed.
* When doing tests, he analyzes all components of bone, blood and protein in my marrow as well as in my urine. Dr. Terpenning does this as well.
* I will never be cured of MM... only from Treatment to Remission, to Treatment, then hopefully remission.
* I need to avoid salad bars, sushi bars (unless credible, but only once in a while), and to avoid colonics at all costs.
* Strongly is against alternative therapies that are linked to eating only RAW, colonics (which could bring bacteria into my blood stream) and the Gerson Institute. Dr. Forman has been following Gerson for over 20 years and has not seen any sign of factual positive results. He has treated many patients who have gone to Gerson and feels they did not become more healthy because of what it claims to offer their patients. He did share that Gerson and other centers out there are for patients who feel they have no where else to turn to, and are desperate.
* Regardless of my age, and the early stage of my disease, the methodologies in how Dr. Forman would treat me or not any different to someone who is 61 or 71 years of age. This came to me as a surprise. I thought for sure there would be something different for me, however not the case.
* Believes that using my own bone marrow is better than using someone else's, although my siblings are usually a 60% match.
* Supports getting a Third Opinion, however the timing is not necessary. He recommends Mayo-Clinic in Scottsdale and Dana Farber Cancer Institute, Ken Anderson in Boston.
* TIPS ON STAYING HEALTHY: Exercise, Sleep, Nutrition and Stress Reduction. If I follow all four tips, it will only help prepare me for what is to come.
After the lengthy appointment, I asked Dr. Forman if I could still enjoy wine. I shared that Mike and I love going wine tasting in Paso Robles and was curious if I had to stop drinking all together. I said to him with my arms in the air, "I just want to live my life!!". He said that I didn't have to stop, just know in moderation what was right and to listen to my body.
I really felt that my appointment with Dr. Forman was very helpful. It made me feel more at ease, knowing that I am following the right steps. When we were walking out of the building, I saw the peacock again by the entrance. Three times in one day?? I looked online to find out the symbolism of a peacock -- there has to be a greater meaning to why the bird was following me....
"Peacocks are ancient symbols of eternal life, love and protection"... AHHH... I love peacocks now.
**** Update***
I spoke with Dr. Forman today, August 30th, who shared that he and his experts reviewed my files and determined that everything Dr. Terpenning has shared is correct. He would accept me as my primary care physician only when my health changes for the worse (which hopefully will be a very long way away). He said that otherwise, I am in good hands and to just be myself, not lose spirit and continue to do what I said in our appointment -- to live my life. I am scheduled to see him in six months.
As I was waiting for my appointment and for my parents to arrive, Mike and I were sitting on a park bench eating our almond butter and banana sandwich on sprouted bread. While we were enjoying every yummy bite, we happened to notice a beautiful peacock stroll past us. The bird actually scared me as it came so very close to where we were sitting and it was rather large. I sent a picture of the bird to Kari and was also texting her, sharing how scared and uncomfortable I was. She told me to stay strong, and put my head and thoughts in Mexico... I did just that.
When I was being checked in, the Nurse gave me a hospital wrist band with a barcode which also had my name and date of birth. It felt so awkward and uncomfortable -- am I really that sick? Do I need to be here? Everyone around me is sick, are they as sick as me? They look sick, I don't look sick.....Why me?
While these thoughts were running through my head, I happened to look outside the Nurse's window to find that the same peacock that was sitting with Mike and I just a moment before, had travelled to the Nurse's office window. The Nurse had shared that COH has only one peacock on campus and it came from a local park. I thought that it was funny that the peacock was right there... staring at us through the window.
First stop after being checked in was meeting with another Nurse who asked me if I was open to being part of a study, where they would take just a sample of my blood as well as tissue and analyze it. This study is only in it's second year, however I agreed to having them monitor my case. I did believe that the Nurse could have done a better job at selling this study -- she was completely out of her element and did not have people-to-people skills. Don't you have to be a people person to be in the medical industry? My parents, Mike and I all laughed. It was good to have a sense of release from my fears for just one moment.
When we finally met with Dr. Steven Forman M.D., F.A.C.P (Chair, Hematology & Hematopoietic Cell Transplantation, Francis and Kathleen McNamara Distinguished Chair in Hematology and Hematopoietic Cell Transplantation, Co-leader, Hematologic Malignancies Program, Comprehensive Cancer Center Clinical Director, Cancer Immunotherapeutics & Tumor Immunology, Professor, Medical Oncology & Therapeutics Research, Visiting Associate, Chemical Engineering, California Institute of Technology, Professor, Hematology & Hematopoietic Cell Transplantation)
YEAH, HE'S the BIG BOSS ON CAMPUS... I felt at ease.
He immediately made me feel comfortable with his calming voice and caring spirit. He shared that he has been watching my case for months via Dr. Terpenning and had expected me to visit him. He was open to many questions from my parents, from Mike and of course from me. I noticed that Dr. Forman was observing me, from my eyes, to my body language to how I was sitting in my chair. He shared that he finds it is important to not only listen to what patients are verbally saying, but also observing patients through other ways. He feels this also can show how patients really feel.
Dr. Forman has a team of experts underneath him, who will all analyze my records to determine my health.
Notes regarding my visit are listed below:
* Treatment has changed so much in the last 20 years, but most recently in the last 5-10 years. He believes like Dr. Terpenning that immediate treatment is not necessary. He is hoping that in 10 more years, I won't even need a stem-cell transplant and there would be a drug that could cure me. Every December, there is a Hematology meeting where the latest and greatest results of drugs, treatments, etc.. are released to the public. Since Dr. Forman is the head, he is the first to learn about what has been developed.
* When doing tests, he analyzes all components of bone, blood and protein in my marrow as well as in my urine. Dr. Terpenning does this as well.
* I will never be cured of MM... only from Treatment to Remission, to Treatment, then hopefully remission.
* I need to avoid salad bars, sushi bars (unless credible, but only once in a while), and to avoid colonics at all costs.
* Strongly is against alternative therapies that are linked to eating only RAW, colonics (which could bring bacteria into my blood stream) and the Gerson Institute. Dr. Forman has been following Gerson for over 20 years and has not seen any sign of factual positive results. He has treated many patients who have gone to Gerson and feels they did not become more healthy because of what it claims to offer their patients. He did share that Gerson and other centers out there are for patients who feel they have no where else to turn to, and are desperate.
* Regardless of my age, and the early stage of my disease, the methodologies in how Dr. Forman would treat me or not any different to someone who is 61 or 71 years of age. This came to me as a surprise. I thought for sure there would be something different for me, however not the case.
* Believes that using my own bone marrow is better than using someone else's, although my siblings are usually a 60% match.
* Supports getting a Third Opinion, however the timing is not necessary. He recommends Mayo-Clinic in Scottsdale and Dana Farber Cancer Institute, Ken Anderson in Boston.
* TIPS ON STAYING HEALTHY: Exercise, Sleep, Nutrition and Stress Reduction. If I follow all four tips, it will only help prepare me for what is to come.
After the lengthy appointment, I asked Dr. Forman if I could still enjoy wine. I shared that Mike and I love going wine tasting in Paso Robles and was curious if I had to stop drinking all together. I said to him with my arms in the air, "I just want to live my life!!". He said that I didn't have to stop, just know in moderation what was right and to listen to my body.
I really felt that my appointment with Dr. Forman was very helpful. It made me feel more at ease, knowing that I am following the right steps. When we were walking out of the building, I saw the peacock again by the entrance. Three times in one day?? I looked online to find out the symbolism of a peacock -- there has to be a greater meaning to why the bird was following me....
"Peacocks are ancient symbols of eternal life, love and protection"... AHHH... I love peacocks now.
**** Update***
I spoke with Dr. Forman today, August 30th, who shared that he and his experts reviewed my files and determined that everything Dr. Terpenning has shared is correct. He would accept me as my primary care physician only when my health changes for the worse (which hopefully will be a very long way away). He said that otherwise, I am in good hands and to just be myself, not lose spirit and continue to do what I said in our appointment -- to live my life. I am scheduled to see him in six months.
Thursday, August 5, 2010
Whirlwind - The Nitty Gritty
Since my last Dr. Appt on July 22, I feel that my life has been in a whirlwind. My thoughts have not been positive all the time and I feel that I have been struggling quite a bit. When I met with Dr. Terpenning on that day, I was able to learn a little more about my disease.
I think the most frustrating part for me is that I am going to be monitored for six months. Meaning that Dr. T is unable to determine where I truly stand at this present time, and is unable to suggest what the next treatment will be because there is not enough data to support how the cancer is progressing or not progressing. Once I receive the data after six months, she will be able to conclude what needs to take place. She took 5 vials of blood on July 22nd. From what I learned, In addition to the blood draw, I will need to give urine on my monthly visits. I hate this waiting game.
I asked Dr. T questions about alternative options to the Western Medicines, starting with Oxygen Therapy. She shared that she didn’t see any published advantages or disadvantages either but didn’t think it would be the best option for me because I am in such an early stage. Dr. T does not support me going to places in Mexico that focus on Raw Foods or coffee enemas that many of the treatment centers suggest that will save my life. Dr. T shared that they are not sanitary and I couldn’t afford to be exposed to an environment that is not clean. Dr. T also said that she believed this will be a complete shock to my body and I could become very, very sick.
I met with Paulette Lambert, R.D., CDE, who is the Director of Nutrition at California Health & Longevity Institute. ((She will be featured on Dr. Oz in the season’s first episode this September!!!)). Paulette agreed that going Raw will be completely detrimental to my body and there is no science or true research behind doing that. She did say that I was eating very healthy already and that I need to incorporate more protein and carbs into my meals.
I have been seeing Barbara Savin, Clinical Hypnotherapist and Healing Energy Specialist at California Health & Longevity Institute weekly. I feel that she truly has been helpful in releasing “energy that has needed to just go”, in her words. I have also had a little bit of spiritual surgery that was the most interesting experience ever. After leaving her sessions, I feel so free, if that makes any sense?
Results from the past month:
*I had lunch with Dr. Barr and my girls (Allison, Shelby, Kari and Colleen) at Dole Corporate Headquarters (across the street from where I work - Four Seasons Hotel Westlake Village) three weeks ago. Dr. Barr thought he was just going to have lunch with me, however I wanted my girls to be there too. It was easier for me to have them hear what he was saying, and if they had any questions to ask him, we would all hear it at the same time. He believes that I am doing the right thing, following the correct steps and supports all of my decisions. I heart Dr. Barr.
*Dr. T could not find any tumors on the bones when she reviewed my full skeletal survey. She did say however there was 30% of the myeloma in the marrow. At the present time, my Cancer is not affecting any other organs.
* I had a PETScan at Rolling Oaks Imagery on August 4th which was not a fun experience. This test is more thorough where they can truly see if there is any blockage with tumors. The nurse injected a dye into my blood stream and I had to lay still for over an hour. Thank goodness my Mama was with me as it wouldn’t have been easy to be there alone. I felt very foggy and told the nurse I could feel the radiation in my body. She shared that she had never heard this before, however I told her that I am very in-tune with my body and know that something felt very different.
The nurse then brought me to the next room where I had to lay down into a “chamber”. It was similar to an MRI, however there was a space in the middle. It was a very awkward time being strapped onto a table, unable to move my hands or body for over an hour. Something that I learned from Barbara Savin is to say the following: " I surround myself with white light (the healing light that will protect me) and my intention is to be cured of Cancer. This helped me to relax and not think too hard that of all the radiation that my body was being exposed to. Results from the test are in and Great news -- I do not have any tumors that they could see.
*I also do not have any bone loss. Dr. T said that my calcium is at a stable level and there are no signs of Osteoporosis. I am also not Anemic and my Kidney's are working effectively.
* I do not need a stem-cell transplantation at this time because it is not performed in the Smoldering Stage, which is where I currently am. Timing is not urgent to do this procedure now, however, transplantation may help me live when my Cancer has progressed. The replacement could come from of my siblings or someone else outside the family who has a match. Unfortunately Shira (my twin) would have been a perfect match, but we are not identical twins. Mike ordered a swab in the mail to submit his information to be a donor to the marrow registry for bone marrow. Maybe he is a match too?
* Less than 1/10 of 1% of the population have my Cancer so there are many unknowns, especially for patients in my age range. Since Dr. T is not as familiar working with patients who are as young as me, she will do all the necessary research in other cases to offer suggestions on treatment.
Notes:
*I am not eligible for Clinical trials, too early in my stage.
*I will become sterile once I go through treatment. Dr. T suggested that I should look at the Fertile Hope website and the International Myeloma website. The transplantation will make me fertile. Dr. T is looking for a crescendo or non-crescendo pattern. If the crescendo pattern started to increase, she would want me to start saving my eggs. If I were to be able to get pregnant, I may be given hormone therapy. If there were problems, I could be given artificial invitro-fertilization down the line. Shira did also say that she would carry our child for us.
Now would not be prudent for me to get pregnant because if the cancer progressed, doctors would not be able to treat me. My cancer cannot be passed on to a child.
What I need to do:
* Eat Healthy, which I already do.
* Exercise more often, at least three times a week.
*Get a Second Option which is scheduled for 12:00 pm, Tuesday, August 17 at City of Hope.
******Mike and I just also returned from Four Seasons Resort Punta Mita, Mexico this week. It was the most relaxing five nights we have had in a long time. Will update more information about my trip soon, just wanted to post some notes as it has been a very long time.
xoxo
I think the most frustrating part for me is that I am going to be monitored for six months. Meaning that Dr. T is unable to determine where I truly stand at this present time, and is unable to suggest what the next treatment will be because there is not enough data to support how the cancer is progressing or not progressing. Once I receive the data after six months, she will be able to conclude what needs to take place. She took 5 vials of blood on July 22nd. From what I learned, In addition to the blood draw, I will need to give urine on my monthly visits. I hate this waiting game.
I asked Dr. T questions about alternative options to the Western Medicines, starting with Oxygen Therapy. She shared that she didn’t see any published advantages or disadvantages either but didn’t think it would be the best option for me because I am in such an early stage. Dr. T does not support me going to places in Mexico that focus on Raw Foods or coffee enemas that many of the treatment centers suggest that will save my life. Dr. T shared that they are not sanitary and I couldn’t afford to be exposed to an environment that is not clean. Dr. T also said that she believed this will be a complete shock to my body and I could become very, very sick.
I met with Paulette Lambert, R.D., CDE, who is the Director of Nutrition at California Health & Longevity Institute. ((She will be featured on Dr. Oz in the season’s first episode this September!!!)). Paulette agreed that going Raw will be completely detrimental to my body and there is no science or true research behind doing that. She did say that I was eating very healthy already and that I need to incorporate more protein and carbs into my meals.
I have been seeing Barbara Savin, Clinical Hypnotherapist and Healing Energy Specialist at California Health & Longevity Institute weekly. I feel that she truly has been helpful in releasing “energy that has needed to just go”, in her words. I have also had a little bit of spiritual surgery that was the most interesting experience ever. After leaving her sessions, I feel so free, if that makes any sense?
Results from the past month:
*I had lunch with Dr. Barr and my girls (Allison, Shelby, Kari and Colleen) at Dole Corporate Headquarters (across the street from where I work - Four Seasons Hotel Westlake Village) three weeks ago. Dr. Barr thought he was just going to have lunch with me, however I wanted my girls to be there too. It was easier for me to have them hear what he was saying, and if they had any questions to ask him, we would all hear it at the same time. He believes that I am doing the right thing, following the correct steps and supports all of my decisions. I heart Dr. Barr.
*Dr. T could not find any tumors on the bones when she reviewed my full skeletal survey. She did say however there was 30% of the myeloma in the marrow. At the present time, my Cancer is not affecting any other organs.
* I had a PETScan at Rolling Oaks Imagery on August 4th which was not a fun experience. This test is more thorough where they can truly see if there is any blockage with tumors. The nurse injected a dye into my blood stream and I had to lay still for over an hour. Thank goodness my Mama was with me as it wouldn’t have been easy to be there alone. I felt very foggy and told the nurse I could feel the radiation in my body. She shared that she had never heard this before, however I told her that I am very in-tune with my body and know that something felt very different.
The nurse then brought me to the next room where I had to lay down into a “chamber”. It was similar to an MRI, however there was a space in the middle. It was a very awkward time being strapped onto a table, unable to move my hands or body for over an hour. Something that I learned from Barbara Savin is to say the following: " I surround myself with white light (the healing light that will protect me) and my intention is to be cured of Cancer. This helped me to relax and not think too hard that of all the radiation that my body was being exposed to. Results from the test are in and Great news -- I do not have any tumors that they could see.
*I also do not have any bone loss. Dr. T said that my calcium is at a stable level and there are no signs of Osteoporosis. I am also not Anemic and my Kidney's are working effectively.
* I do not need a stem-cell transplantation at this time because it is not performed in the Smoldering Stage, which is where I currently am. Timing is not urgent to do this procedure now, however, transplantation may help me live when my Cancer has progressed. The replacement could come from of my siblings or someone else outside the family who has a match. Unfortunately Shira (my twin) would have been a perfect match, but we are not identical twins. Mike ordered a swab in the mail to submit his information to be a donor to the marrow registry for bone marrow. Maybe he is a match too?
* Less than 1/10 of 1% of the population have my Cancer so there are many unknowns, especially for patients in my age range. Since Dr. T is not as familiar working with patients who are as young as me, she will do all the necessary research in other cases to offer suggestions on treatment.
Notes:
*I am not eligible for Clinical trials, too early in my stage.
*I will become sterile once I go through treatment. Dr. T suggested that I should look at the Fertile Hope website and the International Myeloma website. The transplantation will make me fertile. Dr. T is looking for a crescendo or non-crescendo pattern. If the crescendo pattern started to increase, she would want me to start saving my eggs. If I were to be able to get pregnant, I may be given hormone therapy. If there were problems, I could be given artificial invitro-fertilization down the line. Shira did also say that she would carry our child for us.
Now would not be prudent for me to get pregnant because if the cancer progressed, doctors would not be able to treat me. My cancer cannot be passed on to a child.
What I need to do:
* Eat Healthy, which I already do.
* Exercise more often, at least three times a week.
*Get a Second Option which is scheduled for 12:00 pm, Tuesday, August 17 at City of Hope.
******Mike and I just also returned from Four Seasons Resort Punta Mita, Mexico this week. It was the most relaxing five nights we have had in a long time. Will update more information about my trip soon, just wanted to post some notes as it has been a very long time.
xoxo
Monday, July 19, 2010
American Cancer Society's Relay for Life: Santa Monica, CA July 10, 2010
I promised Kelli that I would walk with her in honor of Jack Perkins (Her Dad and who I like to call my Godfather) months before I found out I have Cancer. I had no clue how meaningful this walk would have on my life. Mike was there along with my parents, Shira (my twiny), her hubby Scott, and my girls Kari (karbear), Colleen (Coco), Shelby (STC), and Libby (libbylove).
Walking with Cancer survivors, and others who presently have Cancer was surreal. All I could think about during that day was, Do I really have Cancer? Am I supposed to wear this purple Survivor shirt to tell the world that I am sick? That I could die? Or am I supposed to wear this shirt in pride, that I too will be a Survivor one day, who will be walking along the other purple shirts, cheering and smiling that I am cured of this disease. I know that I am not even at that stage of being Cancer free. Tears came to my eyes as reality was settling in. I am only at the beginning and I have a long way to go.
I think that was the first moment I realized that I was different. As I continued to walk each lap with Mike and everyone else, I kept seeing the familiar faces around me. Even though this helped me, there were so many others who I did not know. It was hard to surround myself with strangers... I wonder if they were they thinking...look at the girl in the purple shirt who has Cancer.
I felt more and more helpless. I continued to walk thinking that, if I ever stopped walking this track, will this mean that I will never be cured? Negative thoughts are typically not what would ever come into my mind at any given moment, however during that day, I felt like I was walking into an abyss. An unknown world of fear, anxiety and sadness.
We were there to support my bestie Kelli, but in the end, I believe it was also to support me. A world that I have known for 31 years is no longer the same world I have grown to love and know. Since July 1st, I really do stop and think about what is important to me and how my life will be changed for the better. I also do not take anything for granted.
Have you recently stood outside and felt the wind brush against your face, rushing through your hair? Have you taken the time to really smell those fresh strawberries, and taste how they are so organically delicious. Have you taken the time to embrace your family, friends and pets closer and tell them how you really feel? These precious moments of life are ever so meaningful. It is so important to take time for the little things, because in a blink of a moment, life can, and will change forever.
My only regret is that I did not walk the track with my father, however at the end of the day I started to smile. I am so lucky to be me.
Friday, July 16, 2010
Thinking
Last night was the first time I was in a social environment surrounded by many who have no idea I have Cancer. It was very, very difficult for me. I did not feel safe.
For those that do know about me and my disease, I feel that I can relax, that I can be open, that I can be myself. I had to excuse myself early from the party, which is something that I wouldn't have ever done... especially since the celebration was in honor of a close friend of mine who is moving back to Houston.
I felt horrible. I felt awkward. I felt out of place that everyone around me was happy. It felt wonderful to be surrounded by all of the laughter and smiles, however I was so sad on the inside.
I left early and cried on my way home. I cried in Mike's arms and he was there for me, assuring that I am going to be ok, that I will make it through this challenging time. That I will be able to be strong.
I met two wonderful ladies yesterday (who's names I would like to keep private but will call Healing Energy and Power). It had been some time since we were able to coordinate our schedules but it finally happened. As they both mentioned, now was the time, and I could not have agreed more. Healing Energy shared that she was recovering from Breast Cancer, going on three years. I debated whether or not to tell her that I have Cancer, but something inside of me wanted to. I knew that I would be exposing myself emotionally (which is something I do not do with clients), however I felt that I could trust them.
I hadn't yet had the strength to share my news to many people, however with them, I felt safe. I felt that I could talk about my Cancer openly and they would be able to offer guidance in someway. Who knew how rewarding my afternoon was. I am so incredibly grateful that Healing Energy and Strength came into my life. I can say both of them will be additional support for me on my journey and I am sure I will refer back to them again.
Healing Energy shared something with me today that I thought was very meaningful. “For every tear we allow to fall, we buy another minute of life. They are given by our creator to heal ourselves. They literally drop stress as each tear literally comes out of you.” -- Mariah Fenton Gladis.
From this quote, I am starting to understand that it is so important to have those moments to cry, to be able to let go, to not have the constant need to put up a front and to really allow myself to believe that I am ok if I have one of those days...
I shared the news that I have Cancer to someone new today. Shed a tear and opened up a little more. First step I guess?
For those that do know about me and my disease, I feel that I can relax, that I can be open, that I can be myself. I had to excuse myself early from the party, which is something that I wouldn't have ever done... especially since the celebration was in honor of a close friend of mine who is moving back to Houston.
I felt horrible. I felt awkward. I felt out of place that everyone around me was happy. It felt wonderful to be surrounded by all of the laughter and smiles, however I was so sad on the inside.
I left early and cried on my way home. I cried in Mike's arms and he was there for me, assuring that I am going to be ok, that I will make it through this challenging time. That I will be able to be strong.
I met two wonderful ladies yesterday (who's names I would like to keep private but will call Healing Energy and Power). It had been some time since we were able to coordinate our schedules but it finally happened. As they both mentioned, now was the time, and I could not have agreed more. Healing Energy shared that she was recovering from Breast Cancer, going on three years. I debated whether or not to tell her that I have Cancer, but something inside of me wanted to. I knew that I would be exposing myself emotionally (which is something I do not do with clients), however I felt that I could trust them.
I hadn't yet had the strength to share my news to many people, however with them, I felt safe. I felt that I could talk about my Cancer openly and they would be able to offer guidance in someway. Who knew how rewarding my afternoon was. I am so incredibly grateful that Healing Energy and Strength came into my life. I can say both of them will be additional support for me on my journey and I am sure I will refer back to them again.
Healing Energy shared something with me today that I thought was very meaningful. “For every tear we allow to fall, we buy another minute of life. They are given by our creator to heal ourselves. They literally drop stress as each tear literally comes out of you.” -- Mariah Fenton Gladis.
From this quote, I am starting to understand that it is so important to have those moments to cry, to be able to let go, to not have the constant need to put up a front and to really allow myself to believe that I am ok if I have one of those days...
I shared the news that I have Cancer to someone new today. Shed a tear and opened up a little more. First step I guess?
Wednesday, July 14, 2010
A Second Opinion from City of Hope
I spoke with Dr. T and I will be meeting with Dr. Forman from City of Hope for my second opinion. I do not have an appointment scheduled yet, but once I do, I will post that info. I have heard from so many friends and family that Dr. Forman is the best of the best. I do admit this makes me feel very comfortable.
Today was a challenging day for me. I feel that I am being pulled in so many directions. I feel pressure for not doing enough, or not being proactive enough about doing something right away to save my life. I do not even know the next step at this time. I do not even know where to go from here but I will have answers in one week from Dr. T. This waiting game is hard, but I am pulling through.
I have cancer... I can't even believe that I have cancer. I am sitting here and I am numb. I am scared.
In being positive about my illness, I know that I can not ever, ever forget that I am meant to fight this disease and live a complete life. I will not give up.
Today was a challenging day for me. I feel that I am being pulled in so many directions. I feel pressure for not doing enough, or not being proactive enough about doing something right away to save my life. I do not even know the next step at this time. I do not even know where to go from here but I will have answers in one week from Dr. T. This waiting game is hard, but I am pulling through.
I have cancer... I can't even believe that I have cancer. I am sitting here and I am numb. I am scared.
In being positive about my illness, I know that I can not ever, ever forget that I am meant to fight this disease and live a complete life. I will not give up.
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