I recently asked Al how he was feeling and he responded with the title of this post. He said, "I'm one sick dude". If it wasn't so pathetic, I would have laughed out loud.
After my last post, I thought we were going to have a peaceful month at home, taking his new chemo pill and relaxing with long talks in front of a roaring fire. Boy, was I wrong! The first couple of days we were home were spent organizing a new slew of meds, catching up on the shows I had DVR'd and convincing our dog that it was really us. And then came Christmas day. Al had become slightly weaker a few days prior to December 25th, but the morning of Christmas, around 4:30 am I knew we were in trouble. By 9:00 am, we were on the way to the hospital in our 3rd ambulance ride.
He was diagnosed with double pneumonia and a urinary tract infection. He is "one sick dude". So here I sit, writing a post that was supposed to sing the praises of the doctors at MD Anderson and the chemotherapy pill and how it was working wonderfully. Well, that post will hopefully be written in the near future. But for now it looks like we will be spending New Year's Eve in a hospital room, our third visit and third holiday in three months.
Tuesday, December 28, 2010
Friday, December 17, 2010
Just the Facts
When I started this blog, I did so to keep all our family and friends informed of what was going on with Al's illness. I thought I would be able to inform, yet keep some of the details to ourselves. As this journey has moved forward and I have become more educated through our doctors, I now feel that maybe everyone should be aware of the facts of this disease. I like to pray in specifics and for that reason I have decided to reveal more than I normally planned so that you can also pray in specifics.
Al was diagnosed with Adrenocortical Carcinoma (ACC). It is a cancer of the adrenal cortex which is the outer layer of the adrenal gland. The adrenal glands are small, triangular-shaped hormone-producing glands located above each kidney. The adrenal cortex is the source of several different steroid hormones. These steroids control inflammation, metabolism and the body's balance of salt and water. The inner layer of the gland is called the medulla, and it is the source of hormones like adrenaline that influence heart rate and blood pressure. ACC is extremely rare and affects only 1 to 2 people per MILLION each year in the United States. It is so rare that MD Anderson is one of only two hospitals in the US that treat this disease. The other hospital is located in Ann Arbor, MI near the University of Michigan. MD Anderson sees on an average only one new patient per week with this disease.
ACC produces steroid hormones, often in very high amounts. Al's tumor has overproduced the hormone, cortisol. Because of this overproduction, he has developed Cushing Syndrome. The symptoms of Cushing Syndrome fit the symptoms that he has developed over the last few months. Some of these include:
- High Blood Pressure
- Muscle Weakness
- Easy bruising
- Facial flushing
- Diabetes
- Inflammation and infection (which explains the leg
problems)
In up to 70% of patients with ACC, the cancer may have spread outside of the adrenal gland by the time it is diagnosed. This has occurred in Al's case. According to his endocrinologist, ACC loves the liver.
OK, enough of the medical lesson. Hopefully now you understand at least a little bit about ACC. Now, what is the treatment for this disease? The options are surgery, chemotherapy, mitotane (chemo pill) or some combination of these treatments. In Al's case, surgery has been ruled out because the cancer has metastasized to the liver. Surgery may be an option later if the tumors shrink. The next option is traditional chemotherapy. Because he was just diagnosed with Cushing Syndrome, chemotherapy is out right now until the Cushing is stabilized. Option 3 is mitotane therapy (chemo pill). Mitotane's job is to destroy the adrenal gland and to decrease the metastasized tumors. It will also destroy the healthy adrenal gland, so replacement hormones are also given. Al's course of treatment at this time is mitotane for 30 days. This will give his body time to stabilize the Cushing Syndrome and shrink the tumors before traditional chemo is given.
His endocrinologists have totally revamped his meds. They have taken some away and added new ones. We are most excited about the meds that will stabilize the Cushing Syndrome. In his doctor's words: "you will feel better in one week"! I literally clapped in the exam room when he said that. That's all I want...for Al to feel better.
This is what I currently have on my kitchen table:
I had to buy a "condo" for all of this medicine:
I have to be super careful with his chemo pill:
Well, that's the facts. I know this was a long post, but now you know everything. We have a plan, options and hope. Please notice my prayer requests at the right side of this blog. Your prayers have been working!
Al was diagnosed with Adrenocortical Carcinoma (ACC). It is a cancer of the adrenal cortex which is the outer layer of the adrenal gland. The adrenal glands are small, triangular-shaped hormone-producing glands located above each kidney. The adrenal cortex is the source of several different steroid hormones. These steroids control inflammation, metabolism and the body's balance of salt and water. The inner layer of the gland is called the medulla, and it is the source of hormones like adrenaline that influence heart rate and blood pressure. ACC is extremely rare and affects only 1 to 2 people per MILLION each year in the United States. It is so rare that MD Anderson is one of only two hospitals in the US that treat this disease. The other hospital is located in Ann Arbor, MI near the University of Michigan. MD Anderson sees on an average only one new patient per week with this disease.
ACC produces steroid hormones, often in very high amounts. Al's tumor has overproduced the hormone, cortisol. Because of this overproduction, he has developed Cushing Syndrome. The symptoms of Cushing Syndrome fit the symptoms that he has developed over the last few months. Some of these include:
- High Blood Pressure
- Muscle Weakness
- Easy bruising
- Facial flushing
- Diabetes
- Inflammation and infection (which explains the leg
problems)
In up to 70% of patients with ACC, the cancer may have spread outside of the adrenal gland by the time it is diagnosed. This has occurred in Al's case. According to his endocrinologist, ACC loves the liver.
OK, enough of the medical lesson. Hopefully now you understand at least a little bit about ACC. Now, what is the treatment for this disease? The options are surgery, chemotherapy, mitotane (chemo pill) or some combination of these treatments. In Al's case, surgery has been ruled out because the cancer has metastasized to the liver. Surgery may be an option later if the tumors shrink. The next option is traditional chemotherapy. Because he was just diagnosed with Cushing Syndrome, chemotherapy is out right now until the Cushing is stabilized. Option 3 is mitotane therapy (chemo pill). Mitotane's job is to destroy the adrenal gland and to decrease the metastasized tumors. It will also destroy the healthy adrenal gland, so replacement hormones are also given. Al's course of treatment at this time is mitotane for 30 days. This will give his body time to stabilize the Cushing Syndrome and shrink the tumors before traditional chemo is given.
His endocrinologists have totally revamped his meds. They have taken some away and added new ones. We are most excited about the meds that will stabilize the Cushing Syndrome. In his doctor's words: "you will feel better in one week"! I literally clapped in the exam room when he said that. That's all I want...for Al to feel better.
This is what I currently have on my kitchen table:
I had to buy a "condo" for all of this medicine:
I have to be super careful with his chemo pill:
Well, that's the facts. I know this was a long post, but now you know everything. We have a plan, options and hope. Please notice my prayer requests at the right side of this blog. Your prayers have been working!
Wednesday, December 15, 2010
Quick Update #3
Today was quite eventful. We met with the endocrinologist and his two attending physicians and they were awesome! Have you ever known a doctor to spend 1 1/2 hours with you just because he wants to make sure he has answered all your questions? He was incredible.
The adrenal gland is responsible for secreting several hormones. Blood work was ordered to see if the tumor was releasing other hormones. By Al's symptoms, it appears that it is not, which is a good sign. Dr. J (the endocrinologist) is not an oncologist, so his job is to keep Al's hormones stable during his treatment. He indicated that one of the drugs Al will take is a chemo pill that will actually kill the diseased adrenal gland. The bad news is that it will also kill the good one. So, Dr. J will monitor the results of that chemo pill and supplement the hormones as needed. He indicated that the results of the blood work would probably not be ready until Monday. But, about 4:30, his nurse called to say that the results were in and he wanted to see Al tomorrow. She said that they are going to adjust his medicines, including adding some new ones and would explain all of that tomorrow.
He also ordered physical therapy for Al. Since Al has spent two of the last six weeks in the hospital, his body has lost a lot of muscle and is causing some of the weakness. We are going to start the therapy as soon as we get home.
Tomorrow at 9:30 we meet with Dr. P, the lead oncologist on Al's team. After that meeting, we will know (hopefully) the who, what, when and where of the treatment Al will have. We are looking forward to that meeting. After the appointment with Dr. P, a bone scan is scheduled and then the appointment with Dr. J. Another busy day!
We are tired and ready for dinner. For Christmas the wonderful staff of Al Willeford Chevrolet gave us gift cards for various restaurants since they knew we would be in Houston quite a bit. So, the big question tonight is...what's for dinner?
The adrenal gland is responsible for secreting several hormones. Blood work was ordered to see if the tumor was releasing other hormones. By Al's symptoms, it appears that it is not, which is a good sign. Dr. J (the endocrinologist) is not an oncologist, so his job is to keep Al's hormones stable during his treatment. He indicated that one of the drugs Al will take is a chemo pill that will actually kill the diseased adrenal gland. The bad news is that it will also kill the good one. So, Dr. J will monitor the results of that chemo pill and supplement the hormones as needed. He indicated that the results of the blood work would probably not be ready until Monday. But, about 4:30, his nurse called to say that the results were in and he wanted to see Al tomorrow. She said that they are going to adjust his medicines, including adding some new ones and would explain all of that tomorrow.
He also ordered physical therapy for Al. Since Al has spent two of the last six weeks in the hospital, his body has lost a lot of muscle and is causing some of the weakness. We are going to start the therapy as soon as we get home.
Tomorrow at 9:30 we meet with Dr. P, the lead oncologist on Al's team. After that meeting, we will know (hopefully) the who, what, when and where of the treatment Al will have. We are looking forward to that meeting. After the appointment with Dr. P, a bone scan is scheduled and then the appointment with Dr. J. Another busy day!
We are tired and ready for dinner. For Christmas the wonderful staff of Al Willeford Chevrolet gave us gift cards for various restaurants since they knew we would be in Houston quite a bit. So, the big question tonight is...what's for dinner?
Tuesday, December 14, 2010
Quick Update #2
Just a quick update to let everyone know that we are in our hotel room in Houston. Thank you to everyone who prayed for travel mercies. We had a very uneventful trip...Al did great, but is glad to be out of the car.
Our first appointment is tomorrow morning with an endocrinologist. Then, it's lab work. Thursday's appointment is with his lead doctor and that is at 9:30 am. We should know what course of treatment Al will have after the consultation with that doctor.
Al's faith is unwavering. He is committed to getting well and is looking forward to getting started tomorrow.
Thank you to everyone for your prayers. I will do a quick update again tomorrow. Have a Blessed Day!
On a lighter note, here is Brian watching "The Biggest Loser" finale after he ate his king size Snickers.
Our first appointment is tomorrow morning with an endocrinologist. Then, it's lab work. Thursday's appointment is with his lead doctor and that is at 9:30 am. We should know what course of treatment Al will have after the consultation with that doctor.
Al's faith is unwavering. He is committed to getting well and is looking forward to getting started tomorrow.
Thank you to everyone for your prayers. I will do a quick update again tomorrow. Have a Blessed Day!
On a lighter note, here is Brian watching "The Biggest Loser" finale after he ate his king size Snickers.
Wednesday, December 8, 2010
Finally!
We heard from MD Anderson today. The point of origin for the malignancy is the adrenal gland. There is a long name for the diagnosis, but we have decided not to publish it. With all due respect, there are already a lot of rumors going around about Al's condition. In fact, I heard yesterday that he needed a kidney transplant. That is absolutely not true as is a lot of the other things I've heard. For that reason, I don't want people "googling" his diagnosis and coming up with their own prognosis. I personally will not search Web MD or any other medical sites for information. I'm not ready for that.
I also did not ask the nurse that delivered the diagnosis for any prognosis. I did not ask what stage the cancer is in or what to expect when we got to Houston. We have a friend that is currently going through his own battle with cancer and he gave us some great advice. He said, don't read too much into what stage the cancer is in. The higher the stage simply means that the treatment has to be more aggressive. I've had people come up to me and say that Al is in stage 4. I don't know where that started, but we have not been told that.
Our next step is appointments with a pulmonologist, endroconologist and his head team doctor in Houston. They are currently working on these appointments. The initial timing for this is up to two weeks! Please pray for a quicker time frame.
Al is in great spirits, a little weak but hanging in there. His blood work this week was good. His right leg is a little red indicating a possible infection. They have extended his antibiotics to treat the leg. Everything else appears stable.
It appears that we are at the starting blocks again. I'm ready for this race to begin!
Thank you for all the kind words and prayers. They mean the world to us.
In the meantime, Coco is enjoying having her daddy home:
I also did not ask the nurse that delivered the diagnosis for any prognosis. I did not ask what stage the cancer is in or what to expect when we got to Houston. We have a friend that is currently going through his own battle with cancer and he gave us some great advice. He said, don't read too much into what stage the cancer is in. The higher the stage simply means that the treatment has to be more aggressive. I've had people come up to me and say that Al is in stage 4. I don't know where that started, but we have not been told that.
Our next step is appointments with a pulmonologist, endroconologist and his head team doctor in Houston. They are currently working on these appointments. The initial timing for this is up to two weeks! Please pray for a quicker time frame.
Al is in great spirits, a little weak but hanging in there. His blood work this week was good. His right leg is a little red indicating a possible infection. They have extended his antibiotics to treat the leg. Everything else appears stable.
It appears that we are at the starting blocks again. I'm ready for this race to begin!
Thank you for all the kind words and prayers. They mean the world to us.
In the meantime, Coco is enjoying having her daddy home:
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