"We know not what lies ahead of us. We know not what the coming days will bring. We live in a world of uncertainty. For some, there will be great accomplishment. For others, disappointment. For some, much of rejoicing and gladness, good health, and gracious living. For others, perhaps sickness and a measure of sorrow. We do not know. But one thing we do know. Like the polar star in the heavens, regardless of what the future holds, there stands the Redeemer of the world, the Son of God, certain and sure as the anchor of our immortal lives. He is the rock of our salvation, our strength, our comfort, the very focus of our faith."
-Gordon B. Hinckley, President of the Church of Jesus Christ of Latter-Day Saints
Sunday, June 24, 2007
Friday, June 15, 2007
THE Diagnosis!!!
What a difference the Huntsman Cancer Institute makes! We received a call at 11:59 am from the oncology doctors. (They were sure to point out it was one minute before they promised.) It is nice to finally be able to piece some of this together.
The official diagnosis is: Diffuse Large B Cell Lymphoma, Intermediate Grade. It is a "fairly fast" growing cancer--they believe it started growing 1 or 2 months ago.
We are busy researching and seeking out second opinions, but the plan for now is:
1. Have a great weekend with our friends & family (including the championship baseball game & Bryan coaching Jordyn's volleyball team)!
2. Bryan will begin Prednisone today which will reduce the swelling in his arm & neck.
3. On Monday Bryan will have a Bone Marrow Biopsy (to determine if the cancer has spread to the bone marrow, which will determine the stage of the cancer) and Echocardiogram (to determine which chemo drug to use/how it will affect the heart).
4. On Tuesday he will begin chemotherapy.
Chemotherapy: This will be performed on an outpatient basis. Chemotherapy is an infusion (IV) which they expect to take 8 hours to complete. He will have the infusion once every 3 weeks for 4-6 cycles (depending on the stage of the cancer).
Outlook: The doctors are optimistic. We don't have accurate survival rates yet because we don't have the staging information. Bryan's tumor is an intermediate, fairly fast growing lymphoma. Low grade lymphoma is resistant to treatment; high grade can kill you suddenly. So, of the lymphoma options, intermediate is the better grade. When we discussed the different cancer diagnoses, Dr. Ward & Dr. Pollack were both hoping the pathology would come back as lymphoma because it is the most curable and no surgical resection is necessary (as opposed to Germ Cell & Thymoma).
More Information: I'm including a link to a website with accurate information about this type of cancer. It also has links to reputable websites for more information. As you read the information, you'll see why it was difficult to detect in Bryan. He does not present many of the symptoms (fever, night sweats, etc) or age categories (people over age 60). Dr. Pollack says that half of the those with this type of lymphoma don't have symptoms and Bryan's health is to his advantage.
http://patients.uptodate.com/topic.asp?file=blod_dis/6595
The official diagnosis is: Diffuse Large B Cell Lymphoma, Intermediate Grade. It is a "fairly fast" growing cancer--they believe it started growing 1 or 2 months ago.
We are busy researching and seeking out second opinions, but the plan for now is:
1. Have a great weekend with our friends & family (including the championship baseball game & Bryan coaching Jordyn's volleyball team)!
2. Bryan will begin Prednisone today which will reduce the swelling in his arm & neck.
3. On Monday Bryan will have a Bone Marrow Biopsy (to determine if the cancer has spread to the bone marrow, which will determine the stage of the cancer) and Echocardiogram (to determine which chemo drug to use/how it will affect the heart).
4. On Tuesday he will begin chemotherapy.
Chemotherapy: This will be performed on an outpatient basis. Chemotherapy is an infusion (IV) which they expect to take 8 hours to complete. He will have the infusion once every 3 weeks for 4-6 cycles (depending on the stage of the cancer).
Outlook: The doctors are optimistic. We don't have accurate survival rates yet because we don't have the staging information. Bryan's tumor is an intermediate, fairly fast growing lymphoma. Low grade lymphoma is resistant to treatment; high grade can kill you suddenly. So, of the lymphoma options, intermediate is the better grade. When we discussed the different cancer diagnoses, Dr. Ward & Dr. Pollack were both hoping the pathology would come back as lymphoma because it is the most curable and no surgical resection is necessary (as opposed to Germ Cell & Thymoma).
More Information: I'm including a link to a website with accurate information about this type of cancer. It also has links to reputable websites for more information. As you read the information, you'll see why it was difficult to detect in Bryan. He does not present many of the symptoms (fever, night sweats, etc) or age categories (people over age 60). Dr. Pollack says that half of the those with this type of lymphoma don't have symptoms and Bryan's health is to his advantage.
http://patients.uptodate.com/topic.asp?file=blod_dis/6595
Thursday, June 14, 2007
Still No Answer...
We met with specialists tonight and the answer is that we still don't have an answer!
They are releasing Bryan from the hospital and will let us know when the pathology is done. We expect results late tomorrow or Monday.
They are releasing Bryan from the hospital and will let us know when the pathology is done. We expect results late tomorrow or Monday.
The Latest Update
We do not have biopsy results yet, but we have an idea of what the day will look like. We have an appointment with specialists this evening around 6:30. A diagnosis will be given and we'll talk about treatment plans at that time. I don't know how long the meeting will be. After the meeting, we will talk to our kids and Bryan's parents. After those discussions, we will post a blog explaining the diagnosis and treatment. I'm expecting that to be later tonight, maybe around 10 pm.
Of course, this is all subject to change. The medical world has its own timetable (something I'm learning to deal with all over again).
Of course, this is all subject to change. The medical world has its own timetable (something I'm learning to deal with all over again).
Wednesday, June 13, 2007
Partial Biopsy Results
The news from the pathology department is they need more time. They think they have narrowed the tumor to one type, but within that type, there are MANY categories. They will do further testing today and tomorrow and hope to give us a definitive answer tomorrow afternoon. (They say the report has been written, but they won't release it until their additional testing is complete.)
The doctor said the good news is the pathologists think they have a good enough sample to work with, but he cautioned they may change their mind tomorrow if there isn't enough sample to run additional tests (which would require another biopsy, possibly the invasive type).
Interesting Tidbit. This doctor also told us that he is a pessimist, but then corrected himself and called himself a realist. Bryan & I burst out laughing because Bryan says the same thing about himself. We all laughed when the doctor said that I sound like his wife. I asked him if he also believed in conspiracies & he said that he probably does. This should be funny to those of you who know Bryan--I told the two of them that they were two peas in a pod! Honestly, it helped me understand why I have difficulty listening to this doctor. I'm used to Ashton's doctor who is an optimist (& has been right 100% of the time). It is difficult to switch gears, but now that I know more about this doctor's personality, it is easier for me to understand why he says some of the things he says.
I am actually encouraged by today's news. They gave us just enough information to hold me over until tomorrow. I think I feel encouraged because we are finally narrowing down the possibilities and a diagnosis is around the corner. For those of you who know me, you know I love to research. What has been frustrating is researching 20 types of tumors and the 20 variations of those (& knowing that 99% of the information didn't matter). Now that we're closing in, my research can actually be meaningful. (The other reason I'm encouraged is that I didn't feel like I was pulling teeth to get information out of the doctor!)
The doctor said the good news is the pathologists think they have a good enough sample to work with, but he cautioned they may change their mind tomorrow if there isn't enough sample to run additional tests (which would require another biopsy, possibly the invasive type).
Interesting Tidbit. This doctor also told us that he is a pessimist, but then corrected himself and called himself a realist. Bryan & I burst out laughing because Bryan says the same thing about himself. We all laughed when the doctor said that I sound like his wife. I asked him if he also believed in conspiracies & he said that he probably does. This should be funny to those of you who know Bryan--I told the two of them that they were two peas in a pod! Honestly, it helped me understand why I have difficulty listening to this doctor. I'm used to Ashton's doctor who is an optimist (& has been right 100% of the time). It is difficult to switch gears, but now that I know more about this doctor's personality, it is easier for me to understand why he says some of the things he says.
I am actually encouraged by today's news. They gave us just enough information to hold me over until tomorrow. I think I feel encouraged because we are finally narrowing down the possibilities and a diagnosis is around the corner. For those of you who know me, you know I love to research. What has been frustrating is researching 20 types of tumors and the 20 variations of those (& knowing that 99% of the information didn't matter). Now that we're closing in, my research can actually be meaningful. (The other reason I'm encouraged is that I didn't feel like I was pulling teeth to get information out of the doctor!)
June 13...1:30 am...an amazing view!
I can't sleep so I decided to post a note.
I have an incredible view of Salt Lake City because I am on the 5th floor of the University of Utah Medical Center hospital in a private room and sit and stare frequently. Most rooms are semi-private. I want to thank Kevin, the head nurse, for making the necessary changes so I can enjoy my surrounding in private.
I feel fortunate to have this opportunity to stop and think about my life, what I have accomplished, what I have yet to accomplish, and my developing testimony of the Gospel of Jesus Christ. I hope all of you will take some time to do the same, but not in a hospital!
PAIN:
I am asked about pain, it seems, every hour. My left arm and neck are still swollen because the tumor will not allow normal blood flow through my left subclavian vein, back to my heart. I still have constant, but manageable, pain in my left elbow and occasional pain in my right elbow, left shoulder, left thigh muscle and headaches. I cannot feel the tumor in the middle of my chest. I can feel, however, the pain and soreness in the middle of my chest from the CT biopsy done yesterday at about noon.
I feel overwhelmed by the circumstance that brought me here .....and by the selfless thoughts, prayers, deeds, assistance, service, sprinkler fixing, baseball game video taping, flat tire fixing, birthday party coordinating (Ashton's), caring for our kids, .....kinds people in our lives.
To all of you I/we say thank you!
Bryan
I have an incredible view of Salt Lake City because I am on the 5th floor of the University of Utah Medical Center hospital in a private room and sit and stare frequently. Most rooms are semi-private. I want to thank Kevin, the head nurse, for making the necessary changes so I can enjoy my surrounding in private.
I feel fortunate to have this opportunity to stop and think about my life, what I have accomplished, what I have yet to accomplish, and my developing testimony of the Gospel of Jesus Christ. I hope all of you will take some time to do the same, but not in a hospital!
PAIN:
I am asked about pain, it seems, every hour. My left arm and neck are still swollen because the tumor will not allow normal blood flow through my left subclavian vein, back to my heart. I still have constant, but manageable, pain in my left elbow and occasional pain in my right elbow, left shoulder, left thigh muscle and headaches. I cannot feel the tumor in the middle of my chest. I can feel, however, the pain and soreness in the middle of my chest from the CT biopsy done yesterday at about noon.
I feel overwhelmed by the circumstance that brought me here .....and by the selfless thoughts, prayers, deeds, assistance, service, sprinkler fixing, baseball game video taping, flat tire fixing, birthday party coordinating (Ashton's), caring for our kids, .....kinds people in our lives.
To all of you I/we say thank you!
Bryan
Tuesday, June 12, 2007
Back from biopsy
Bryan is back from the biopsy. He's been back for an hour or so. He is sleeping (with the help of a sedative).
If you know Bryan, this tidbit will not surprise you. He was fascinated by the CT and biopsy equipment. He was happy to know that the CT scanner is only a few weeks old and that the University is a testing ground for Siemens--he says they get the latest equipment because of that. (He also said Utah Valley is getting the U's old CT equipment and Utah Valley is very happy about it.) He also wanted to know the angle used when inserting the needle and other "interesting" info like that.
He has an "x" on his chest written in purple marker (where the needle was inserted). I know our boys will love that!
Now we wait for pathology results (and keep our fingers crossed that this sample is adequate for a diagnosis).
If you know Bryan, this tidbit will not surprise you. He was fascinated by the CT and biopsy equipment. He was happy to know that the CT scanner is only a few weeks old and that the University is a testing ground for Siemens--he says they get the latest equipment because of that. (He also said Utah Valley is getting the U's old CT equipment and Utah Valley is very happy about it.) He also wanted to know the angle used when inserting the needle and other "interesting" info like that.
He has an "x" on his chest written in purple marker (where the needle was inserted). I know our boys will love that!
Now we wait for pathology results (and keep our fingers crossed that this sample is adequate for a diagnosis).
Tissue is the issue
They just took Bryan to radiology for the biopsy. They said it could take anywhere from 45 minutes to several hours.
We talked with an internal medicine doctor this morning who helped me understand this "waiting game." It is impossible to know what type of tumor Bryan has until we have a tissue sample from a biopsy. A tumor may look solid on a CT scan, but once they get in to biopsy, it may not be solid & therefore a CT guided needle biopsy may not be able to capture enough of a sample. If that is the case, a more invasive biopsy (using general anesthesia and inserting a telescope into an incision and cutting out a piece of the tumor) is needed and we have to wait all over again (wait to schedule the biopsy, wait to be taken for the biopsy & wait for the results). As we've found out, this could be a long process. As the doctor said, "tissue is the issue."
The radiologists think the tumor resembles characteristics of two different types of tumors. The internal medicine doctor cautioned us that it could be more than 20 different tumors and what you see on a CT scan is not accurate enough to make that determination. (I'm still researching those two types of tumors in preparation.)
Sooooooo as much as I want answers, I am calm about this process. It could be several days before we know what we're dealing with. That is part of the journey.
We talked with an internal medicine doctor this morning who helped me understand this "waiting game." It is impossible to know what type of tumor Bryan has until we have a tissue sample from a biopsy. A tumor may look solid on a CT scan, but once they get in to biopsy, it may not be solid & therefore a CT guided needle biopsy may not be able to capture enough of a sample. If that is the case, a more invasive biopsy (using general anesthesia and inserting a telescope into an incision and cutting out a piece of the tumor) is needed and we have to wait all over again (wait to schedule the biopsy, wait to be taken for the biopsy & wait for the results). As we've found out, this could be a long process. As the doctor said, "tissue is the issue."
The radiologists think the tumor resembles characteristics of two different types of tumors. The internal medicine doctor cautioned us that it could be more than 20 different tumors and what you see on a CT scan is not accurate enough to make that determination. (I'm still researching those two types of tumors in preparation.)
Sooooooo as much as I want answers, I am calm about this process. It could be several days before we know what we're dealing with. That is part of the journey.
Biopsy Delayed
The biopsy is now scheduled for 10:45, but we're not counting on that time. Radiology says they run on time. The nurse says that the schedule is a "guideline."
Just a note: the time on the posts has been central time so it is one hour behind Utah time. I did just fix the blog to post in MST so the timing should be correct from here on out.
Just a note: the time on the posts has been central time so it is one hour behind Utah time. I did just fix the blog to post in MST so the timing should be correct from here on out.
Waiting for the biopsy...
8:00 was the scheduled time for the biopsy. We're still waiting to hear from radiology. Bryan is patient. JoLayna is not.
Monday, June 11, 2007
Thank you for your prayers and support
I want to thank all of you for your support and prayers! Our family has received much love and assistance from friends, family, neighbors and members of our Ward. This outpouring of willingness to help is making this sudden experience manageable.
Bryan
Bryan
Day Two
Monday, June 11th
Bryan met with many doctors in the morning.
WHAT WE KNOW SO FAR. Bryan has an anterior mediastinal tumor. It is slightly smaller than a baseball. This tumor is compressing the subclavian vein (causing the slow blood flow and swelling in the arm). This tumor is growing around the major vessels leaving the heart, although a doctor told Bryan it is not "close" to the heart.
BIOPSY. The biopsy was scheduled to take place today, but it was rescheduled for tomorrow morning. It is possible that a more invasive biopsy will be needed if they aren't able to "grab" enough of a tissue sample by this biopsy, but the radiologist performing the biopsy gives the procedure a 70% chance of success.
WHAT WE DON'T KNOW. What type of tumor we're dealing with, malignant or benign. (I guess more updated wording is invasive and non-invasive.) We should know the biopsy result by Wednesday morning.
WHAT WE THINK. We are led to believe that this tumor has to be removed whether it is invasive or non-invasive. A "tentative" surgery date is this Thursday, but that has not been confirmed or scheduled.
BIOPSY RESULTS. I will post when we receive the biopsy results (expected Wednesday morning).
Bryan met with many doctors in the morning.
WHAT WE KNOW SO FAR. Bryan has an anterior mediastinal tumor. It is slightly smaller than a baseball. This tumor is compressing the subclavian vein (causing the slow blood flow and swelling in the arm). This tumor is growing around the major vessels leaving the heart, although a doctor told Bryan it is not "close" to the heart.
BIOPSY. The biopsy was scheduled to take place today, but it was rescheduled for tomorrow morning. It is possible that a more invasive biopsy will be needed if they aren't able to "grab" enough of a tissue sample by this biopsy, but the radiologist performing the biopsy gives the procedure a 70% chance of success.
WHAT WE DON'T KNOW. What type of tumor we're dealing with, malignant or benign. (I guess more updated wording is invasive and non-invasive.) We should know the biopsy result by Wednesday morning.
WHAT WE THINK. We are led to believe that this tumor has to be removed whether it is invasive or non-invasive. A "tentative" surgery date is this Thursday, but that has not been confirmed or scheduled.
BIOPSY RESULTS. I will post when we receive the biopsy results (expected Wednesday morning).
The Discovery
Sunday, June 10th
LEFT ARM SWELLING. Bryan's left arm has been swelling for approximately 3 weeks. He says it was "mildly painful and uncomfortable." On Sunday, June 10th, Bryan couldn't fit his arm into his dress shirt and he couldn't button the top button (because the swelling was now in his neck as well). Around 1 pm (after Bryan taught two lessons at church), we drove to a clinic in Sandy. They sent us to the University of Utah Emergency Room.
U OF U EMERGENCY ROOM. We arrived at the U around 2:00 pm. The doctors thought it was an infection or a blood clot. Infection was ruled out quickly (by blood tests and lack of heat in the arm). They ordered an ultrasound of his arm to check for blood clots. The ultrasound did not show blood clots, but showed slow blood flow in his left arm. The ER doctor was concerned by the result and told us that Bryan had a major problem--either something was blocking a blood vessel in the chest cavity or there was a blood clot in a blood vessel in the chest cavity. (That male doctor's shift was over & was replaced by a female doctor at this point.)
ANGIO CT. The doctor ordered an Angio CT (different and less invasive than an angiogram--forgive my lack of proper medical terms). There were several trauma cases ahead of Bryan and we waited hours for the test to be completed. Once they performed test (around 9 pm), we had results in minutes.
THE FIRST NEWS. The ER doctor told Bryan that the CT revealed a "mass" in his chest. She showed us the location of the "mass" on the CT. She told Bryan he would need to see several specialists and admitted Bryan to the hospital.
BRYAN'S ROOM. He was "wheeled" to his room around 11 pm. He was sharing a room with another person so I left for the night (the kids were still at home). I was almost home and Bryan called to tell me he had been moved to a private room.
NOT MUCH SLEEP. Even with a private room, Bryan hardly slept. Even in a quiet house (all the kids were asleep when I arrived there), JoLayna hardly slept.
LEFT ARM SWELLING. Bryan's left arm has been swelling for approximately 3 weeks. He says it was "mildly painful and uncomfortable." On Sunday, June 10th, Bryan couldn't fit his arm into his dress shirt and he couldn't button the top button (because the swelling was now in his neck as well). Around 1 pm (after Bryan taught two lessons at church), we drove to a clinic in Sandy. They sent us to the University of Utah Emergency Room.
U OF U EMERGENCY ROOM. We arrived at the U around 2:00 pm. The doctors thought it was an infection or a blood clot. Infection was ruled out quickly (by blood tests and lack of heat in the arm). They ordered an ultrasound of his arm to check for blood clots. The ultrasound did not show blood clots, but showed slow blood flow in his left arm. The ER doctor was concerned by the result and told us that Bryan had a major problem--either something was blocking a blood vessel in the chest cavity or there was a blood clot in a blood vessel in the chest cavity. (That male doctor's shift was over & was replaced by a female doctor at this point.)
ANGIO CT. The doctor ordered an Angio CT (different and less invasive than an angiogram--forgive my lack of proper medical terms). There were several trauma cases ahead of Bryan and we waited hours for the test to be completed. Once they performed test (around 9 pm), we had results in minutes.
THE FIRST NEWS. The ER doctor told Bryan that the CT revealed a "mass" in his chest. She showed us the location of the "mass" on the CT. She told Bryan he would need to see several specialists and admitted Bryan to the hospital.
BRYAN'S ROOM. He was "wheeled" to his room around 11 pm. He was sharing a room with another person so I left for the night (the kids were still at home). I was almost home and Bryan called to tell me he had been moved to a private room.
NOT MUCH SLEEP. Even with a private room, Bryan hardly slept. Even in a quiet house (all the kids were asleep when I arrived there), JoLayna hardly slept.
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