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.
Saturday, August 21, 2010
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
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