Several people have called me and asked why I haven't updated my blog in a long time. It has been largely due to pain, and a lack of desire to pass along bad news.
Several weeks ago, my last CT scan showed that my primary tumor (in my right pelvis) had started growing again. In fact, it had grown 0.5cm along each axis since it had been measured a little over six weeks prior. It is growing into my sciatic nerve and into my sacro-illiac joint. This involvement with the major nerves going to my right leg has made common activities both difficult and painful.
For example, I have to use a special device to put my sock on; walking, and especially going up and down stairs, is very painful; sitting for any length of time (say to write a blog post) is also very painful. Right now I have taken 30 mg of Oxycodone (morphine), along with what is regularly supplied by my pain pump AND a bollus (an extra shot of pain meds) from my pain pump, and I can still only sit here a minute or two at a time.
When my oncologist found that my tumor was growing, he terminated chemotherapy. I am now in the midst of receiving "palliative radiation therapy". This is where you receive lower does of radiation at a time, but you receive it more times.My treatment will be twenty doses of radiation, five days a week for four weeks. Because the pain prevents my from lying still (either on my stomach or on my back) I have been taking the radiation treatment under general anaesthesia. Hopefully they will shrink the tumor enough so that I don't have to continue with the GA.
My pain doctor has largely been playing catchup with managing my pain. As a result, I am going to have an operation called a cordotomy, where they will destroy the pain nerve from my pelvis to my brain. I will no longer be able to feel pain (or hot or cold) in the affected area. I do not know when this will occur.
Because of the pain management issues, Sue and I have decided to at least postpone, if not completely cancel, our trip to London. Hopefully when the radiation and cordotomy are done, we will be able to do the trip.
I largely spend my days lying face down on the bed, propping myself up on my elbows to read. My sister Mary created some foam rubber "butt boosters" which I can sometimes use to prop my tumor off the mattress, so I can lay on my back and watch TV.
I won't deny that there has been a fair amount of crying and wailing through all this. However, I take a huge amount of enjoyment in Sue's and Katie's company. I am still able to appreciate the beauty of a crisp, clear autumn day. I am deeply grateful to my cancer buddy Frank for helping me keep my attitude straight.
Well, I'm going to lie down for awhile. Peace out.
Saturday, October 30, 2010
Wednesday, September 8, 2010
status update September 8,2010
I thought I would update everything went last week.The CT scan showed that the tumors in my lungs are either shrinking or are stable. The pump implant went more or less without incident.The pain along my scars lasted about five days, and gradually went away. I have an appointment who will be managing the pump next, and they will start titrating (tweaking)the dosage.
Julia's and Sam's wedding was a blast, both literally and figuratively. the winds were blowing about 30 - 40 mph, which drove everyone inside the tent, making for a more intimate affair. we left shortly after when the cake was cut and served - natch.
The next day was a lovely brunch At Mary and Mike's house,eating up the leftovers from the wedding.We left early again, as all of the activity was really starting to to get to me.
I almost forgot the biggest surprise. I looked up from my bed, and there stood Andrew behind Katie, with the biggest grins you could have. It really made the weekend for Sue and I.
Julia's and Sam's wedding was a blast, both literally and figuratively. the winds were blowing about 30 - 40 mph, which drove everyone inside the tent, making for a more intimate affair. we left shortly after when the cake was cut and served - natch.
The next day was a lovely brunch At Mary and Mike's house,eating up the leftovers from the wedding.We left early again, as all of the activity was really starting to to get to me.
I almost forgot the biggest surprise. I looked up from my bed, and there stood Andrew behind Katie, with the biggest grins you could have. It really made the weekend for Sue and I.
Saturday, August 28, 2010
Busy week coming up
Having surgery next Wednesday (9/1) to install an intrathecal pump. This is a device which drips a much lower dosage of pain killers directly onto my spine.This will hopefully fix some pain management issues without leaving me feeling doped to the gills.
Also next week I have my next CT scan of my chest and pelvis. Hopefully this will show that the tumors in my lungs haven't started growing again, and the tumor in my pelvis has stopped. I am pretty scared about all this.
Oh, and next Saturday (9/4) is Julia Head's wedding, which I am going to do everything in my power to attend.
All in all a very busy week. The following week I start chemo again.gills.
Also next week I have my next CT scan of my chest and pelvis. Hopefully this will show that the tumors in my lungs haven't started growing again, and the tumor in my pelvis has stopped. I am pretty scared about all this.
Oh, and next Saturday (9/4) is Julia Head's wedding, which I am going to do everything in my power to attend.
All in all a very busy week. The following week I start chemo again.
Also next week I have my next CT scan of my chest and pelvis. Hopefully this will show that the tumors in my lungs haven't started growing again, and the tumor in my pelvis has stopped. I am pretty scared about all this.
Oh, and next Saturday (9/4) is Julia Head's wedding, which I am going to do everything in my power to attend.
All in all a very busy week. The following week I start chemo again.gills.
Also next week I have my next CT scan of my chest and pelvis. Hopefully this will show that the tumors in my lungs haven't started growing again, and the tumor in my pelvis has stopped. I am pretty scared about all this.
Oh, and next Saturday (9/4) is Julia Head's wedding, which I am going to do everything in my power to attend.
All in all a very busy week. The following week I start chemo again.
Thursday, July 15, 2010
Status Update - Not Good
Earlier this week I had a series of tests - CT Scans of my pelvis and chest, and a MUGA to test how well my heart was functioning.
The MUGA showed no problems with my heart. My oncologist had been concerned because the chemotherapy I was taking will eventually damage your heart. This hasn't happened.
The CT Scans of my chest show continued improvement of the tumors in my lungs. For example, one tumor that had been 4 mm had shrunk to 2 mm.
The CT Scan of my pelvis showed that the tumor in my pelvis has grown since May. Specifically, it has gone from 9 x 5.7 cm to 9 x 7.3 cm. This means it is 128% its previous size, an increase of 28%.
As a result, I am going to be starting chemotherapy with a new drug combination on Monday. I will have between six and eight treatments, one every three weeks.
The MUGA showed no problems with my heart. My oncologist had been concerned because the chemotherapy I was taking will eventually damage your heart. This hasn't happened.
The CT Scans of my chest show continued improvement of the tumors in my lungs. For example, one tumor that had been 4 mm had shrunk to 2 mm.
The CT Scan of my pelvis showed that the tumor in my pelvis has grown since May. Specifically, it has gone from 9 x 5.7 cm to 9 x 7.3 cm. This means it is 128% its previous size, an increase of 28%.
As a result, I am going to be starting chemotherapy with a new drug combination on Monday. I will have between six and eight treatments, one every three weeks.
Thursday, June 17, 2010
Status Update
I saw the oncologist today. He believes that the tumor in my pelvis has started to decrease in size. In the words of his PA, "you have to know where to look for it to see it". Before, my butt was definitely misshapen.
My hemoglobin is still somewhat low (9.2). It will be rechecked prior to my next scheduled chemo treatment on 6/21.
The oncologist wants to do one or two more chemo treatments after this next one. You may recall that the original plan was to stop at six. The main chemo drug I am getting (carboplatin) has a tendency to rot your heart if you take it more than six time. He is sending me for a MUGA scan to check how my heart is doing, as well at a CAT scan on my lungs and pelvis, prior to a potential 7th course of chemo.
My hemoglobin is still somewhat low (9.2). It will be rechecked prior to my next scheduled chemo treatment on 6/21.
The oncologist wants to do one or two more chemo treatments after this next one. You may recall that the original plan was to stop at six. The main chemo drug I am getting (carboplatin) has a tendency to rot your heart if you take it more than six time. He is sending me for a MUGA scan to check how my heart is doing, as well at a CAT scan on my lungs and pelvis, prior to a potential 7th course of chemo.
Where I've been for Three Weeks
It's been a long three weeks since I lasted posted, and I am sorry about the delay. I won't say I've been busy, per se, but it has been an eventful three weeks.
My adventures in the medical world started the day after I started my last round of chemo (June 2nd). All that afternoon I was feeling wonky. For example, I distinctly remember standing in front of the open refrigerator, trying to remember what I was looking for, and then realizing it was my sneakers. Most days I can recall that footware is seldom found inside large kitchen appliances, but not that day.
About 4:30 or 5:00 that afternoon I started shaking uncontrollably from the cold. I was sitting in my office in front of the computer, shivering and shivering. I didn't want to move. I didn't want to call for help. I just shivered and tried to get warm.
Sue got home around 5:30 and found me. I remember getting into bed fully dressed, shoes and all, and pulling the covers up and finally feeling warm. I then slept until about 7:30. Sue got me up and took my temperature, which was 103.5. She called the emergency number for the oncology clinic, and they told me to go to the hospital.
I don't remember much about the next two days. Mostly, I slept. They put me in a private room in the cardiac ward because I was immune suppressed. They tested everything: urine, blood, feces. They sent me for a chest x-ray to confirm I didn't have pneumonia. They were unable to find anything that was causing an infection (My oncologist later said the fever was probably from a bone strengthener I received as part of my chemo). I received fluids and antibiotics intravenously. They let me go home that Friday.
For most of the next week, I slept. I would get up in the morning, have breakfast with Sue or Katie, and then "nap". I would nap from 8:00 until 11:30, have lunch, and then nap from 12:30 until 4:00. I would have dinner and then go to bed around 8:00 PM.
Finally I called the doctor's office Friday afternoon and asked if all this sleeping was OK. The nurse checked my last blood sample (taken the previous Wednesday) and said that my hemoglobin count was "low". If a normal hemoglobin range is 14 - 16, mine was 7.5. She scheduled me for a transfusion the next day. I got two units of blood and felt somewhat better.
This past week I have still been lethargic, "unable to get off the couch". I still napped two or three hours each day. I couldn't do anything more exacting then reading or watching television.
So anyway, that's my excuse for my tardiness in posting. Hopefully I will have less of a reaction to my chemo this next time. My oncologist says that he is planning on cutting the dose. Let's see how that works.
My adventures in the medical world started the day after I started my last round of chemo (June 2nd). All that afternoon I was feeling wonky. For example, I distinctly remember standing in front of the open refrigerator, trying to remember what I was looking for, and then realizing it was my sneakers. Most days I can recall that footware is seldom found inside large kitchen appliances, but not that day.
About 4:30 or 5:00 that afternoon I started shaking uncontrollably from the cold. I was sitting in my office in front of the computer, shivering and shivering. I didn't want to move. I didn't want to call for help. I just shivered and tried to get warm.
Sue got home around 5:30 and found me. I remember getting into bed fully dressed, shoes and all, and pulling the covers up and finally feeling warm. I then slept until about 7:30. Sue got me up and took my temperature, which was 103.5. She called the emergency number for the oncology clinic, and they told me to go to the hospital.
I don't remember much about the next two days. Mostly, I slept. They put me in a private room in the cardiac ward because I was immune suppressed. They tested everything: urine, blood, feces. They sent me for a chest x-ray to confirm I didn't have pneumonia. They were unable to find anything that was causing an infection (My oncologist later said the fever was probably from a bone strengthener I received as part of my chemo). I received fluids and antibiotics intravenously. They let me go home that Friday.
For most of the next week, I slept. I would get up in the morning, have breakfast with Sue or Katie, and then "nap". I would nap from 8:00 until 11:30, have lunch, and then nap from 12:30 until 4:00. I would have dinner and then go to bed around 8:00 PM.
Finally I called the doctor's office Friday afternoon and asked if all this sleeping was OK. The nurse checked my last blood sample (taken the previous Wednesday) and said that my hemoglobin count was "low". If a normal hemoglobin range is 14 - 16, mine was 7.5. She scheduled me for a transfusion the next day. I got two units of blood and felt somewhat better.
This past week I have still been lethargic, "unable to get off the couch". I still napped two or three hours each day. I couldn't do anything more exacting then reading or watching television.
So anyway, that's my excuse for my tardiness in posting. Hopefully I will have less of a reaction to my chemo this next time. My oncologist says that he is planning on cutting the dose. Let's see how that works.
Thursday, May 27, 2010
Status Update - Good News!
I just met with my oncologist, and we went over the results from my latest CT scan:
There are still some obstacles to being cured: the tumor in my pelvis would need to be removed (which would be very difficult right now), as well as the tumors in my lungs. I expect that my life expectancy has gone up, at the very least.
Happy Memorial Day!
- The tumors in my lungs have have shrunk 60% - 70% since the last CT scan on April 4th
- The large tumor in my pelvis is the same size. However, there is a pool of fluid on the inside of the tumor, which is caused by necrotic tissue. This indicates that the tumor is dying from the inside out
- Removal of any remaining tumors in my lungs
- Removal of the tumor in my pelvis
- Some surgical repair of my pelvis, which is fractured. This would reduce the pain in my buttocks
There are still some obstacles to being cured: the tumor in my pelvis would need to be removed (which would be very difficult right now), as well as the tumors in my lungs. I expect that my life expectancy has gone up, at the very least.
Happy Memorial Day!
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