It's finally December 15th which meant today was our follow-up consult with Dr. JM (oncology surgeon). Tim, Alayna and Jeremy were all with me to hear what the doctor had to say. Dr. JM said that he had reviewed all the results from my tests this week, as as it appears, the tumor has not changed in size, spread elsewhere, etc. My lungs and other vital organs are still clear. He stated that I will most likely need to have my spleen removed when they remove the tumor and a small portion of the tail of my pancreas. We talked about some risks associated with surgery, but overall Dr. JM is very optimistic about the prognosis. We were able to set up a surgery date which will be January 6th. That is just 3 weeks away. Since the mass hasn't appeared to have changed in the past 2 months, we are at this point not worried about the wait. The doctor also says that we will not be able to determine need for any aftercare until the tumor is removed, and it's cell content can be examined. The overall hope is that once it is removed, we will not need to do any form of treatment.
Although it means waiting even longer for an end to this ordeal, I am thrilled with everything the doctor had to say. We all felt that this was the most encouraging appointment yet. Also, this interim wait gives Tim and I the opportunity to return to ND for Christmas as we had initially planned. I cannot wait to be home to celebrate the holidays with so many of those I love, especially this year. We have so many blessings to be thankful for.
As always, thank you, everyone for all the prayers, cards, kind words, etc. For many of you, I look forward to seeing you in just about a week. Again, please put all comments on this wall or in my inbox on Facebook.
Thursday, December 15, 2011
Saturday, December 10, 2011
A week of tests.
Just a quick update. This week I was scheduled for several tests at KU Medical Center. Monday and Tuesday, I had an octreotide scan and repeat CTs of my chest, abdomen, and pelvis. You can imagine the nasty stuff they had me drink. I think in some ways all the barium I have ingested in the last couple months is due payback for the barium I have given during videoswallow tests for my job. Ugh. Friday, I had an EGD to rule-out gastric (stomach) involvement in the tumor. The GI doctor gave us results of what she could see, and basically said everything seemed fine. I'm guessing we won't know results from the rest of the tests until Thursday the 15th when we go in for my follow-up surgical consult. On a happier note, the 15th of December marks the 4th Anniversary of mine and Tim's first date. I'm guessing that is a lucky day, so fingers crossed for the appointment.
Since starting this blog, I have received so much positive support and feedback. Thanks everyone. Again, for any comments, please write them here or my Facebook Inbox and not on my wall. I appreciate it.
Since starting this blog, I have received so much positive support and feedback. Thanks everyone. Again, for any comments, please write them here or my Facebook Inbox and not on my wall. I appreciate it.
Saturday, December 3, 2011
The whole story up to this point...
As many of you have probably heard, we received news earlier this year regarding my health. I am not sure how much everyone knows, and I know that many people have had a lot of questions, so I figured I would write a running blog with some of my latest information to keep people in the loop about what is going on.
First off, I want to thank everyone for their overwhelming support during this time. If I have learned anything, it is that I have an amazing support system. Our families, friends, coworkers, and communities have all done what they can to let me/us know that I/we are loved and that so many are out there, willing to help out in any way they can. From a personal standpoint, I thank God everyday for Tim. He's been my rock.
So I guess I will start from the beginning...
In late August, I started to get this severe back pain. My sisters and I had just returned from Minneapolis, and Tim and I were preparing to go see his family in Illinois. I sucked it up and opted to just take a lot of Ibuprofen as needed. Smart, huh? Anyway during our trip to Illinois, the pain became increasingly worse. When we returned home, I made an appointment with my primary care doctor (Dr. K). At the appointment, Dr. K told me that there was a small amount of blood in my urine sample which would need to be sent for culture (UA testing). Dr. K also discussed the possibility of kidney stones. Because of my symptoms (blood in urine and position of back pain), I was treated for a kidney infection with antibiotics and pain pills. The UA test later came back as negative; however, my symptoms went away, so no more testing was completed.
In early October, I had another scheduled appointment with my primary care doctor (Dr. K) for my annual insurance qualification physical. Another urine sample was taken, and Dr. K told me that my sample continued to show trace amounts of blood. Dr. K and I again discussed possible kidney stones, so she ordered a abdomen/pelvic CT scan without contrast to further evaluate my kidneys.
In the morning on October 20th, I went to the hospital where I work to have the CT w/o contrast completed. After the test, I proceeded with my work day. During a lunch meeting, I received a message from Dr. K telling me to call her as soon as I was available. When I called her back, she told me that the CT revealed a 15 centimeter mass positioned in the retroperitoneal space within my abdomen on the left side. This means behind my kidneys, spleen, etc. After I got off the phone with Dr. K and speaking with my boss, I went home and told Tim.
I went back in for an abdomen/pelvic CT scan with contrast the morning of October 21st. After the test, Tim and I went home and waited. Dr. K called me a few times that day to check on me and tell me that she was circulating my results to various physicians at our main hospital. That afternoon, she called and said our hospital staff was referring me to a specialist outside our healthsystem, an oncologist who specializes in sarcomas, Dr. R. The first available appointment was November 8. More waiting...
My parents came down to Kansas City, so they could come to the consult with Dr. R. Alayna and Jeremy also came to the appointment. Dr. R looked at my CTs and ordered a chest CT scan and a biopsy of the mass. He stated that we couldn't determine the course of treatment without first knowing what type of tissue the mass contained, or the nature of the mass. It was at this appointment that the possibility of the "C" word came to light.
The chest CT and biopsy was on November 11th. Tim's parents came from Illinois to be with us for this test. I was given a conscious sedation drug and local anesthetic, so I had no idea what was going on during the procedure. Later that day, Tim called for the chest CT results, and those results were negative, meaning no signs of growth on my lungs. This was a huge blessing.
We didn't get results of the biopsy until the evening of November 17th. Dr. R called and spoke with Tim and I over speaker phone. Dr. R stated that the mass is classified as a Neuroendocrine Tumor. While some types of these tumors are benign in nature, this mass contains malignant cells. On a positive note; however, it appeared contained. Dr. R then referred my case to another oncology specialist, Dr. MM.
My consult with Dr. MM was November 23rd. Tim and Alayna were with me for my appointment. He again reviewed my background medical history, performed a physical exam, reviewed my pathology reports, and reviewed my CT films. Dr. MM told us that based on all reports, this mass is considered low grade, meaning slow growing, and it has most likely been there for a long time. He also said that removing the mass would be the optimal course of treatment. He said that the tumor appears to be arising from the tail portion of my pancreas; however, this does not mean pancreatic cancer. It is exactly what it sounds like...a tumor arising from the tail of the pancreas. Although the tumor contained some malignant cells, we will not know completely what it is made of until it is removed. I had many questions for Dr. MM, and he answered all of them with a very positive outlook. He spent about an hour discussing my case with Tim, Alayna, and I, so we left that appointment feeling really good about the situation. Our next step was oncology surgeon referral...
We met with the surgical oncologist, Dr. JM on December 1st at KU Medical Center's Cancer Center. Dr. JM was the first to show Tim, Alayna, and I the images shown on the CT scan. He pointed out the various organs, arteries, etc. We could clearly see the mass (we are all in agreement that we wish we hadn't seen it). Dr. JM stated that we would need to complete a battery of tests before proceeding with surgery, so that he could map out his procedure course. He said that these masses are rare, but he does see approximately two cases per month.
So that is where we are at now. I have tests Monday and Tuesday, then I meet with Dr. JM, the surgical oncologist, again December 15th. Yes, more waiting.
Overall, I am doing OK. Really, if you were to look at me, you would have no idea that I am sick. That's because I am not. I have up to this point been relatively healthy. I have had a few issues that we now know may have been a result of this mass, but at the time, you wouldn't have suspected a tumor was the source. If anything is wearing me down, it is the stress of it all, but we are trying to take each day in stride. I am continuing to work in between appointments. I have kept up with my daily routine, Christmas preparations, etc. I even hosted Thanksgiving dinner for my family at our house.
Again, I cannot thank everyone enough who have expressed their concern to us and our families. It is a blessing to know that we have such caring people in our lives.
If you have any comments, please respond in the comments section of this blog. Please do not post anything on my wall on Facebook regarding this matter. Thank you for the support.
First off, I want to thank everyone for their overwhelming support during this time. If I have learned anything, it is that I have an amazing support system. Our families, friends, coworkers, and communities have all done what they can to let me/us know that I/we are loved and that so many are out there, willing to help out in any way they can. From a personal standpoint, I thank God everyday for Tim. He's been my rock.
So I guess I will start from the beginning...
In late August, I started to get this severe back pain. My sisters and I had just returned from Minneapolis, and Tim and I were preparing to go see his family in Illinois. I sucked it up and opted to just take a lot of Ibuprofen as needed. Smart, huh? Anyway during our trip to Illinois, the pain became increasingly worse. When we returned home, I made an appointment with my primary care doctor (Dr. K). At the appointment, Dr. K told me that there was a small amount of blood in my urine sample which would need to be sent for culture (UA testing). Dr. K also discussed the possibility of kidney stones. Because of my symptoms (blood in urine and position of back pain), I was treated for a kidney infection with antibiotics and pain pills. The UA test later came back as negative; however, my symptoms went away, so no more testing was completed.
In early October, I had another scheduled appointment with my primary care doctor (Dr. K) for my annual insurance qualification physical. Another urine sample was taken, and Dr. K told me that my sample continued to show trace amounts of blood. Dr. K and I again discussed possible kidney stones, so she ordered a abdomen/pelvic CT scan without contrast to further evaluate my kidneys.
In the morning on October 20th, I went to the hospital where I work to have the CT w/o contrast completed. After the test, I proceeded with my work day. During a lunch meeting, I received a message from Dr. K telling me to call her as soon as I was available. When I called her back, she told me that the CT revealed a 15 centimeter mass positioned in the retroperitoneal space within my abdomen on the left side. This means behind my kidneys, spleen, etc. After I got off the phone with Dr. K and speaking with my boss, I went home and told Tim.
I went back in for an abdomen/pelvic CT scan with contrast the morning of October 21st. After the test, Tim and I went home and waited. Dr. K called me a few times that day to check on me and tell me that she was circulating my results to various physicians at our main hospital. That afternoon, she called and said our hospital staff was referring me to a specialist outside our healthsystem, an oncologist who specializes in sarcomas, Dr. R. The first available appointment was November 8. More waiting...
My parents came down to Kansas City, so they could come to the consult with Dr. R. Alayna and Jeremy also came to the appointment. Dr. R looked at my CTs and ordered a chest CT scan and a biopsy of the mass. He stated that we couldn't determine the course of treatment without first knowing what type of tissue the mass contained, or the nature of the mass. It was at this appointment that the possibility of the "C" word came to light.
The chest CT and biopsy was on November 11th. Tim's parents came from Illinois to be with us for this test. I was given a conscious sedation drug and local anesthetic, so I had no idea what was going on during the procedure. Later that day, Tim called for the chest CT results, and those results were negative, meaning no signs of growth on my lungs. This was a huge blessing.
We didn't get results of the biopsy until the evening of November 17th. Dr. R called and spoke with Tim and I over speaker phone. Dr. R stated that the mass is classified as a Neuroendocrine Tumor. While some types of these tumors are benign in nature, this mass contains malignant cells. On a positive note; however, it appeared contained. Dr. R then referred my case to another oncology specialist, Dr. MM.
My consult with Dr. MM was November 23rd. Tim and Alayna were with me for my appointment. He again reviewed my background medical history, performed a physical exam, reviewed my pathology reports, and reviewed my CT films. Dr. MM told us that based on all reports, this mass is considered low grade, meaning slow growing, and it has most likely been there for a long time. He also said that removing the mass would be the optimal course of treatment. He said that the tumor appears to be arising from the tail portion of my pancreas; however, this does not mean pancreatic cancer. It is exactly what it sounds like...a tumor arising from the tail of the pancreas. Although the tumor contained some malignant cells, we will not know completely what it is made of until it is removed. I had many questions for Dr. MM, and he answered all of them with a very positive outlook. He spent about an hour discussing my case with Tim, Alayna, and I, so we left that appointment feeling really good about the situation. Our next step was oncology surgeon referral...
We met with the surgical oncologist, Dr. JM on December 1st at KU Medical Center's Cancer Center. Dr. JM was the first to show Tim, Alayna, and I the images shown on the CT scan. He pointed out the various organs, arteries, etc. We could clearly see the mass (we are all in agreement that we wish we hadn't seen it). Dr. JM stated that we would need to complete a battery of tests before proceeding with surgery, so that he could map out his procedure course. He said that these masses are rare, but he does see approximately two cases per month.
So that is where we are at now. I have tests Monday and Tuesday, then I meet with Dr. JM, the surgical oncologist, again December 15th. Yes, more waiting.
Overall, I am doing OK. Really, if you were to look at me, you would have no idea that I am sick. That's because I am not. I have up to this point been relatively healthy. I have had a few issues that we now know may have been a result of this mass, but at the time, you wouldn't have suspected a tumor was the source. If anything is wearing me down, it is the stress of it all, but we are trying to take each day in stride. I am continuing to work in between appointments. I have kept up with my daily routine, Christmas preparations, etc. I even hosted Thanksgiving dinner for my family at our house.
Again, I cannot thank everyone enough who have expressed their concern to us and our families. It is a blessing to know that we have such caring people in our lives.
If you have any comments, please respond in the comments section of this blog. Please do not post anything on my wall on Facebook regarding this matter. Thank you for the support.
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