I am a Kaiser baby. So is Steve. Children of teachers, Kaiser is generally the chosen HMO of the Teachers' Unions, and as Steve is a teacher, it is the only insurance that both of us have ever known. Also five minutes from our house, our children were born there; I have had 30+ years of excellent neurology care for my epilepsy first by Dr. Rosenberg and second by Dr. Kaplan; we adore the our pediatrician, Dr. Cantrell; and, my doctors have taken superb care of me through my breast cancer fight.
Now, in a fight for my life, we have chosen to leave Kaiser for a PPO form of insurance, most likely to receive care through UCSD. In my mind's eye, I know this is the right decision. However, seeing Dr. Kaplan yesterday, potentially for the last time, my heart told a different story. Always my protector, Steve had not wanted me to go to this appointment alone. His foresight amazed me as pulled out of the Kaiser parking lot with tears streaming down my cheeks. He knew it would be hard for me. Deep down, I knew too, but like usual, I just chose not to think about it.
I have to admit, I was excited when Dr. Kaplan told me that UCSD has an Epilepsy Center. Fancy. Scary. What if they do not like me taking Tegretol? The drug that has been working so well for me since I was 12 years old, it is NOT the most state-of-the-art for the type of seizures to which I am prone. I know I have to be prepared for a slew of tests and a change in medication. However, what if I have a seizure in the interim? I would loose my driving privileges again, a loss of freedom that would be tough to take. Again, I choose not to give these fears too much heed. It will be what it will be. It will be up to me to be my own advocate.
My emotions from yesterday gave me a sneak peek as to what it will be like for me to leave Dr. Sweet and the rest of my care team. I will add them to my Christmas card list. I will make every attempt to keep in touch and who knows, maybe we will even be back, one day. With Kaiser, I feel safe. In the coming year using a PPO, if I cannot re-create the same safe haven, we can always choose to re-enroll with Kaiser during Steve's open enrollment period, this time next year. I doubt that will happen.
So, what is ahead for me? CHOICES!!!!! For all intents and purposes, I may never have anything else but the same chemo I am having or another common chemo regimen for the rest of my life. This IS a likely scenario. However, if there is a cure out there, whether it be at UCSD or Vanderbilt University, I will now have the choice and my insurance coverage will follow.
Coming into this season of Thanksgiving, some of my friends are posting what they are thankful for each day on FaceBook. I love reading these posts and sharing their joy. I have to say, though outside of the obvious friends, family, etc., topping my list right now are three things: that Steve has a job, so we have access to a great group health plan; that I have wonderful parents who have helped us sort through all of the insurance red tape, find and pay for the insurance plan that is going to work best for us; and lastly, I am thankful for HIPPA, the law that insured that I cannot be discriminated against as we make this change.
Living from test to test, scan to scan, access to a great PPO that gives us choice and freedom to move between health care institutions is the best gift for which I could ever ask. And for this I am most thankful. It has given me hope.
Showing posts with label UCSD. Show all posts
Showing posts with label UCSD. Show all posts
Wednesday, November 16, 2011
Tuesday, October 4, 2011
Digging Deep: Disappointing Scan Results
The results of my CT scan of my chest and abdomen showed a slight increase in the size of my tumors on my liver. Disappointing, YES! The good news is that there is no cancer on my other organs. The other good news...this is only the first form of chemo that we have tried. Like I told my kids yesterday, if every form of chemo worked on every person, there would be a cure for cancer by now. Besides, the way I see it, because I have a particularly aggressive form of cancer, the chemo may have worked very well and dramatically slowed down its progression, an indicator that can never be measured.
All that being said, I start a new chemotherapy regimen on Monday. After much discussion, we opted for two drugs that Dr. Sweet said he has seen work well together, Ixempra and Xeloda. One will be infused every three weeks; the other being pill form and I take it every day for two weeks. I have great faith that regimen will be the ticket!!!
Dr. Sweet also treated me to a handicapped parking status, as chemo is causing shortness of breath like I have never experienced. It is so frustrating to be out of breath before I even enter my destination! Walking any distance is difficult...though I will continue to try. Somehow, I think it is good for me.
We also talked in great length about switching from Kaiser to the UCSD Health System. The move would be very costly, but my gut instinct is leaning towards the change. Another mitigating factor is that our Kaiser doctors/clinicians feel like family to us, and I am not just referring to Oncology. I love my kids' pediatrician; my neurologist is fantastic; my plastic surgery team is the cream of the crop; my general surgeon is very talented and more like a friend; and, Steve and my primary care physician is thorough, caring and was Steve's dad's physician, as well (many of you know of his dad's heart problems....so family history is really important). Distance would also be a factor. Kaiser is right around the corner from my house; Moores Cancer Center is a 30-minute drive. Considering I am at an appointment at least twice a week, combined with the fact that I am getting more and more tired and driving less and less myself, distance is definitely something to consider.
Having spent my career in the health care industry, I have learned that nothing can replace state-of-the-art care. While chemo is the only answer for me right now, over time, who knows? And, though Dr. Sweet is very versed on up and coming research, I believe Moores Cancer Center doctors are bound to have access to the latest and greatest treatments prior to Kaiser.
All this considered, it would be very difficult to leave Kaiser, still. Steve and I will weigh all of the pro's and the con's and make this decision very soon. Although, it may seem like I am leaning towards the UCSD system in this post, I digress as there are many other factors to consider that I cannot amply describe here.
Now, what I have decided is that I must turn my focus to doing every thing in my power to promote the health of my liver. My diet is bound to get stricter.....and I will do what ever else I can, too. Blood tests show that my liver function is stable, not perfect but not declining. Keeping it that way is critical to my ability to continue metabolize chemotherapy drugs.
So, yesterday, I was pretty upset. Today, I still am. I am talked out, which I why I wanted to post this morning. However, in order to do so, I really had to dig deep to put the disappointment of yesterday into perspective. What I kept coming back to is that if I worry too much about tomorrow, I miss the special moments of today. I have today. Today is a gift. And my tomorrows....they will keep coming...as much as any of us can know of our tomorrows.
The bottom line is that nothing has changed. I am still here. And I am grateful. And I am blessed.
All that being said, I start a new chemotherapy regimen on Monday. After much discussion, we opted for two drugs that Dr. Sweet said he has seen work well together, Ixempra and Xeloda. One will be infused every three weeks; the other being pill form and I take it every day for two weeks. I have great faith that regimen will be the ticket!!!
Dr. Sweet also treated me to a handicapped parking status, as chemo is causing shortness of breath like I have never experienced. It is so frustrating to be out of breath before I even enter my destination! Walking any distance is difficult...though I will continue to try. Somehow, I think it is good for me.
We also talked in great length about switching from Kaiser to the UCSD Health System. The move would be very costly, but my gut instinct is leaning towards the change. Another mitigating factor is that our Kaiser doctors/clinicians feel like family to us, and I am not just referring to Oncology. I love my kids' pediatrician; my neurologist is fantastic; my plastic surgery team is the cream of the crop; my general surgeon is very talented and more like a friend; and, Steve and my primary care physician is thorough, caring and was Steve's dad's physician, as well (many of you know of his dad's heart problems....so family history is really important). Distance would also be a factor. Kaiser is right around the corner from my house; Moores Cancer Center is a 30-minute drive. Considering I am at an appointment at least twice a week, combined with the fact that I am getting more and more tired and driving less and less myself, distance is definitely something to consider.
Having spent my career in the health care industry, I have learned that nothing can replace state-of-the-art care. While chemo is the only answer for me right now, over time, who knows? And, though Dr. Sweet is very versed on up and coming research, I believe Moores Cancer Center doctors are bound to have access to the latest and greatest treatments prior to Kaiser.
All this considered, it would be very difficult to leave Kaiser, still. Steve and I will weigh all of the pro's and the con's and make this decision very soon. Although, it may seem like I am leaning towards the UCSD system in this post, I digress as there are many other factors to consider that I cannot amply describe here.
Now, what I have decided is that I must turn my focus to doing every thing in my power to promote the health of my liver. My diet is bound to get stricter.....and I will do what ever else I can, too. Blood tests show that my liver function is stable, not perfect but not declining. Keeping it that way is critical to my ability to continue metabolize chemotherapy drugs.
So, yesterday, I was pretty upset. Today, I still am. I am talked out, which I why I wanted to post this morning. However, in order to do so, I really had to dig deep to put the disappointment of yesterday into perspective. What I kept coming back to is that if I worry too much about tomorrow, I miss the special moments of today. I have today. Today is a gift. And my tomorrows....they will keep coming...as much as any of us can know of our tomorrows.
The bottom line is that nothing has changed. I am still here. And I am grateful. And I am blessed.
Tuesday, August 16, 2011
Chemo Number Four, A UCSD Second Opinion and My Little Soldiers
I was so proud of my kids yesterday. I knew there were a half dozen people who would have watched them...but as I thought I was only going to be out of the house for about three hours for chemo and two for my appointment at UCSD, I knew that they would prefer to stay home. As Harrison is nearly 12 and Maddie nearly 8, Steve and I were OK with that. Besides, I was a latch key kid at that age.
Madison called me once during the day. It was around lunch time and I was in chemo. She says to me, "Mommy, are you bringing home food?"
My response, "No, I was not planning on it." This, I had already told them. I think it was wishful thinking on their part, as I we have been depriving them of fast food lately.
Madison replied in a chipper, non-whiny tone, "OK, Momma. I was just checking," and in the same efficient manner that I tend apply, she ended our conversation. Harrison made them peanut butter and honey sandwiches.
When I got home from chemo later than I expected, all was fine. Their laundry was put away, as I had asked. They had both read their books for an hour, as I had asked. My friend and colleague, Lori Mathios, had dropped off a beautiful salad and fixings for us to have for dinner that night, which was fabulous. The house was a mess, but I was fine with that. My kids were safe and not arguing.
Chemotherapy had gone well, but I was more tired than I expected. During my session, Dr. Sweet came to see me to answer a few questions that I had with regards to my blood counts, which was nice. After I got home, I had time to spend a few minutes with each of my kids and then managed to fall asleep on the couch for a bit. When Steve picked me up to take us two our second opinion at Dr. Sara Boles at UCSD, I was glad that he was able to do so. I was much too tired to drive.
Dr. Boles was a great match for us. Not only was she warm and friendly, she has a specific interest in metastasized, triple negative breast cancer. Jeanie Spies, RN, my long time friend and confident from Rady Children's Peckham Center Cancer and Blood Disorders, came to the appointment with us.We started reviewing my case with Dr. Boles. Steve and Jeanie chimed in where appropriate: Jeanie, having a great outsider's view of how I had handled this disease/past chemo and Steve filling in a few pertinent blanks in my two year ordeal.
Dr. Boles had reviewed my chart thoroughly and talked to the doctor who is PI on the Phase I clinical trial for my disease, Protocol No. P276-00/52/10. We talked in depth about the status of the clinical trial and how I might fit into it. There is a current waiting list (that I am now on). I would have to be a UCSD patient...which I could become during Steve's district's open enrollment period in November (taking affect in January). If we decide to go this route, more than likely, I would be entering this clinical trial in Phase II, the randomized part of the trial, where a computer would authorize the use of the new drug, currently referred to as P276-00. I would have a 50/50 chance of receiving the new drug. Either way, I would receive gemcitabine and Carboplatin chemotherapies concurrently, i.e. if receiving P276-00, I would be receiving a third chemotherapy drug. This makes sense to me. Jeanie states that gemcitabine is one that use at the Peckham Center regularly...and it is well tolerated. Since I have never had either of these drugs before and I know my body responds well to chemo, we think these drugs may be good for me to try.
We talked about other chemo options, as well, such as parb-inhibitors. However, I felt that the most important part of my visit was this: I learned of the glowing results of my pathology report from my mastectomy. It was a good as they come. All of the matter that Dr. Deree removed during my modified radical mastectomy had no signs of cancer. In other words, the matter removed was just scar tissue and lymph nodes. I knew that chemo had shrunk the tumor by 75%. However, what I did not understand...is that while the tumor was still existing, the cancer was not.
Obviously, a cancer cell got away. But the good news in all this is that chemo works for me. This gives me great hope.
With 6-8 known tumors on my liver, Dr. Boles explained that to her, the state of the cancer means that there is probably cancer is another organ. The cells are currently too small to detect through a CT scan. If this is the case, I am guessing it is in my lungs, where last month, a CT scan showed two "non-descript" spots that Dr. Sweet is watching. For this reason, chemo is my best option.
That being said, I feel stronger than ever. If anyone has the tools to fight this, it is me. More important than body chemistry and a strong disposition, love surrounds me. More and more, I am convinced that modern medicine alone is not the answer for me. I am the answer. My family is the answer. You are the answer. Bring on the chemo. I can take it.
On another note, I ate almost all raw food yesterday! I think I had a small piece of foccacia at dinner and a few Wheat Thins during chemo...and that was it for processed food! I am also replacing a meal (or two) a day with green shakes. Yesterday's was honey dew, spinach, organic honey and flax seed. It was not too bad! This morning's is kale, spinach, apples, bananas, flax and maybe some honey. I might throw something tart in there too. Maybe some lemon juice.
This is a very long post. But before I close out, I wanted to share with you what Steve and I came home to last night: a show, carefully rehearsed by our kids. Performed on our trampoline, it was a choreographed gymnastics routine to the song, "Look at Me Now" by Chris Brown. Our little soldiers...always fighting to bring a smile to our faces.
Madison called me once during the day. It was around lunch time and I was in chemo. She says to me, "Mommy, are you bringing home food?"
My response, "No, I was not planning on it." This, I had already told them. I think it was wishful thinking on their part, as I we have been depriving them of fast food lately.
Madison replied in a chipper, non-whiny tone, "OK, Momma. I was just checking," and in the same efficient manner that I tend apply, she ended our conversation. Harrison made them peanut butter and honey sandwiches.
When I got home from chemo later than I expected, all was fine. Their laundry was put away, as I had asked. They had both read their books for an hour, as I had asked. My friend and colleague, Lori Mathios, had dropped off a beautiful salad and fixings for us to have for dinner that night, which was fabulous. The house was a mess, but I was fine with that. My kids were safe and not arguing.
Chemotherapy had gone well, but I was more tired than I expected. During my session, Dr. Sweet came to see me to answer a few questions that I had with regards to my blood counts, which was nice. After I got home, I had time to spend a few minutes with each of my kids and then managed to fall asleep on the couch for a bit. When Steve picked me up to take us two our second opinion at Dr. Sara Boles at UCSD, I was glad that he was able to do so. I was much too tired to drive.
Dr. Boles was a great match for us. Not only was she warm and friendly, she has a specific interest in metastasized, triple negative breast cancer. Jeanie Spies, RN, my long time friend and confident from Rady Children's Peckham Center Cancer and Blood Disorders, came to the appointment with us.We started reviewing my case with Dr. Boles. Steve and Jeanie chimed in where appropriate: Jeanie, having a great outsider's view of how I had handled this disease/past chemo and Steve filling in a few pertinent blanks in my two year ordeal.
Dr. Boles had reviewed my chart thoroughly and talked to the doctor who is PI on the Phase I clinical trial for my disease, Protocol No. P276-00/52/10. We talked in depth about the status of the clinical trial and how I might fit into it. There is a current waiting list (that I am now on). I would have to be a UCSD patient...which I could become during Steve's district's open enrollment period in November (taking affect in January). If we decide to go this route, more than likely, I would be entering this clinical trial in Phase II, the randomized part of the trial, where a computer would authorize the use of the new drug, currently referred to as P276-00. I would have a 50/50 chance of receiving the new drug. Either way, I would receive gemcitabine and Carboplatin chemotherapies concurrently, i.e. if receiving P276-00, I would be receiving a third chemotherapy drug. This makes sense to me. Jeanie states that gemcitabine is one that use at the Peckham Center regularly...and it is well tolerated. Since I have never had either of these drugs before and I know my body responds well to chemo, we think these drugs may be good for me to try.
We talked about other chemo options, as well, such as parb-inhibitors. However, I felt that the most important part of my visit was this: I learned of the glowing results of my pathology report from my mastectomy. It was a good as they come. All of the matter that Dr. Deree removed during my modified radical mastectomy had no signs of cancer. In other words, the matter removed was just scar tissue and lymph nodes. I knew that chemo had shrunk the tumor by 75%. However, what I did not understand...is that while the tumor was still existing, the cancer was not.
Obviously, a cancer cell got away. But the good news in all this is that chemo works for me. This gives me great hope.
With 6-8 known tumors on my liver, Dr. Boles explained that to her, the state of the cancer means that there is probably cancer is another organ. The cells are currently too small to detect through a CT scan. If this is the case, I am guessing it is in my lungs, where last month, a CT scan showed two "non-descript" spots that Dr. Sweet is watching. For this reason, chemo is my best option.
That being said, I feel stronger than ever. If anyone has the tools to fight this, it is me. More important than body chemistry and a strong disposition, love surrounds me. More and more, I am convinced that modern medicine alone is not the answer for me. I am the answer. My family is the answer. You are the answer. Bring on the chemo. I can take it.
On another note, I ate almost all raw food yesterday! I think I had a small piece of foccacia at dinner and a few Wheat Thins during chemo...and that was it for processed food! I am also replacing a meal (or two) a day with green shakes. Yesterday's was honey dew, spinach, organic honey and flax seed. It was not too bad! This morning's is kale, spinach, apples, bananas, flax and maybe some honey. I might throw something tart in there too. Maybe some lemon juice.
This is a very long post. But before I close out, I wanted to share with you what Steve and I came home to last night: a show, carefully rehearsed by our kids. Performed on our trampoline, it was a choreographed gymnastics routine to the song, "Look at Me Now" by Chris Brown. Our little soldiers...always fighting to bring a smile to our faces.
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