Today is my last official day as an employee of Rady Children's. I am trying not to be overly emotional about it. It helps that I had visitors this morning and that I got my laptop back today. It also helps that some very special friends are putting on a golf tournament in my honor on March 10. You see, now that I am not working, I can no longer accept Disability Payments from the State of California. I must now apply for Social Security Disability. I have been told that it can take up to a year to actually start receiving these payments. So what do we do in the meantime? That is a good question. Luckily, my parents have offered to supplement our income and Steve's family is helping a bit too. Plain and simple, especially considering my increased medical expenses, this household can't run on a teacher's salary alone.
This is where the golf tournament comes in too. Especially since it is not tax deductible, I am truly honored by the number of donations that we have received. Many from people we do not even know. I am even more honored by the work of the tournament committee who are sacrificing time out of their already busy schedules to get this done. I feel loved.
On the health front, I had a blood transfusion on Monday to relieve me from anemia. I feel so much better. I no longer get winded walking around my house, there is pep in my voice and I even did some laundry yesterday. The other side, however, is that I have not been able to have chemo for the past two weeks because my platelet count is dangerously low. Dr. Boles says not to worry and that my blood chemistry appears to show that my liver is functioning a little better than it was before. This is very good news. So, my goal is to have chemo February 13. It will undoubtedly wipe all of my counts out again, bring back my anemia and make me sick. I can handle it, if I know it is working.
All in all, I am really looking forward to the golf tournament, where I will speak and participate where I can. Please check it out using this link, if nothing else just to admire the good work my friends are doing. I take great pride in these friends. They are loved more than they know.
Showing posts with label Dr. Sarah Boles. Show all posts
Showing posts with label Dr. Sarah Boles. Show all posts
Friday, February 3, 2012
Saturday, December 17, 2011
Cancer Has Progressed
Yesterday, we learned that my cancer has progressed in my liver and is also confirmed in my lungs. In addition, I have a mass under my arm that we are assuming is a tumor. No need to biopsy, thank goodness. Not such good news.
Holding Steve's hand looking at the scans yesterday, I was overwhelmed. We knew I had two nodules that they were "watching" in my lungs...but to now have 7 or 8 confirms that the two original nodules were cancer. Also, the pain in my side which I originally thought was from my back flap reconstructive surgery was not so much from the surgery but from a new mass residing with my lymph nodes, back where my original cancer was in 2009. I guess now there is no need for me to curse the surgery, as I had been doing from time to time as a result of the constant pain. That tissue is all soft and good.
So, what is the plan? To switch to UCSD. I cannot begin to describe how cared for I felt yesterday by Dr. Sweet as he scrambled to get answers and conversed with Dr. Boles, my new UCSD Oncologist about a plan for my care. We were in his office for an extra 90 minutes....but the outcome was well worth the wait.
One thing Dr. Sweet suggested was some radiation on my side for the pain. As many of you reading this may know, since I already have been radiated on that side, we still are not sure if this can be done. However, if it will get me off some of these pain meds...I am all for it. That appointment is next Wednesday.
I think the most disheartening thing was that we learned that my fatigue is likely disease related, not chemo related. This is really hard to take because I am really tired. Dr. Sweet is going to try to qualify me for a transfusion for my anemia in order to give me more energy for our trip. I hope he can.
Through a message from Dr. Boles through Dr. Sweet, I learned that I am not a candidate for the clinical trial at City of Hope, but my progression will perhaps get me onto the clinical trial that I had been hoping for at UCSD. I see Dr. Boles immediately after my vacation and she asked that I arrive with scans in hand. They have been ordered and ready for pick up.
We are very scared. Yet we know that nothing really has changed. We knew triple-negative breast cancer is quick to spread. We knew that we needed to find a chemo drug that worked. All that has happened is that we have not found a chemo drug that works. We have only tried three. There are more out there. We have hope.
Yesterday is a bit painful for Steve and I to relive. So, I ask that we not receive a lot of questions at this time regarding my treatment. I will try to blog through out the week to keep all updated.
On a positive note, I had a little conversation with my body yesterday and came up with a theme song: "I am a Believer." I think my body needs to know that I believe in it regardless of what the scans show. And there is some deeper logic to this too; so you do not think I am completely crazy. I ask that when you think of me, think of this little jingle please. Maybe I will even try to come up with alternate lyrics for it...just for fun. I have nothing but time, after all.
Holding Steve's hand looking at the scans yesterday, I was overwhelmed. We knew I had two nodules that they were "watching" in my lungs...but to now have 7 or 8 confirms that the two original nodules were cancer. Also, the pain in my side which I originally thought was from my back flap reconstructive surgery was not so much from the surgery but from a new mass residing with my lymph nodes, back where my original cancer was in 2009. I guess now there is no need for me to curse the surgery, as I had been doing from time to time as a result of the constant pain. That tissue is all soft and good.
So, what is the plan? To switch to UCSD. I cannot begin to describe how cared for I felt yesterday by Dr. Sweet as he scrambled to get answers and conversed with Dr. Boles, my new UCSD Oncologist about a plan for my care. We were in his office for an extra 90 minutes....but the outcome was well worth the wait.
One thing Dr. Sweet suggested was some radiation on my side for the pain. As many of you reading this may know, since I already have been radiated on that side, we still are not sure if this can be done. However, if it will get me off some of these pain meds...I am all for it. That appointment is next Wednesday.
I think the most disheartening thing was that we learned that my fatigue is likely disease related, not chemo related. This is really hard to take because I am really tired. Dr. Sweet is going to try to qualify me for a transfusion for my anemia in order to give me more energy for our trip. I hope he can.
Through a message from Dr. Boles through Dr. Sweet, I learned that I am not a candidate for the clinical trial at City of Hope, but my progression will perhaps get me onto the clinical trial that I had been hoping for at UCSD. I see Dr. Boles immediately after my vacation and she asked that I arrive with scans in hand. They have been ordered and ready for pick up.
We are very scared. Yet we know that nothing really has changed. We knew triple-negative breast cancer is quick to spread. We knew that we needed to find a chemo drug that worked. All that has happened is that we have not found a chemo drug that works. We have only tried three. There are more out there. We have hope.
Yesterday is a bit painful for Steve and I to relive. So, I ask that we not receive a lot of questions at this time regarding my treatment. I will try to blog through out the week to keep all updated.
On a positive note, I had a little conversation with my body yesterday and came up with a theme song: "I am a Believer." I think my body needs to know that I believe in it regardless of what the scans show. And there is some deeper logic to this too; so you do not think I am completely crazy. I ask that when you think of me, think of this little jingle please. Maybe I will even try to come up with alternate lyrics for it...just for fun. I have nothing but time, after all.
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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