Hi,
I've been delaying writing this for a week, waiting to get the results of my blood work from my surgeon. I haven't heard anything, yet. This is Wednesday; I was supposed to get a call on Friday.
I saw my surgeon last week on Aug. 17. I hadn't seen him for 5 months, since my last scans. He was looking at my chart and said, " When was your surgery?"
Answer, "June last year."
Doctor, "And you're on the shots?"
Me, "I'm on the LAR." ( The shot that lasts a month.)
Doctor, "These just look like random numbers."
Turns out the surgeon was looking at a list of my Chromagranin A values from the last 15 months. He was looking at the big picture. My numbers have gone up and back down three times in 15 months. Evidently, they are supposed to settle down somewhere.
The oncologist and I were fat, dumb, and happy because my CgA values had come tumbling down from 93 to 48 to 22 in the last three months. I was actually in the normal range and thought God had granted me a reprieve for at least a few months. Evidently, the surgeon isn't fooled by a couple of good numbers. He expected the numbers to stay in a narrow range.
I pointed out that the last number was 22--a totally normal number. He wasn't impressed. He told the PAC to have my blood tested that day. If the CgA wasn't low, I had to have an EUS done.
EUS means the gastro guys will look in my small intestine again to see if there's a new tumor there. I last had that done in October 2008 and March 2009. I get tired of going in and having the doctors find nothing. I feel they are looking at me like, "Why are you here again?"
My surgeon wants to find the tumor(s). My oncologist says it doesn't matter where they are, the medication still treats them. My tumors are about 1 mm, and they didn't show up in the scans again August 5th and 6th. There is nothing visible in my liver, so the doctor wants to go back to the intestine where the previous tumors were and see if there is a new tumor. If I didn't have a tumor, my Chromogranin A would stay low all the time.
So I wait. I'll call tomorrow to see if I can at least get a nurse to read me the numbers.
School started this week. After school I feel like I hurt from my head to my calves. Lots of muscles ache. It took me until Wednesday to even stop at the dry cleaners for 5 minutes and leave some ironing. The other days I just went straight home. Tonight I'm feeling pretty good. K and I took Spunky for a walk.
Love,
Sharon
Wednesday, August 26, 2009
Friday, August 7, 2009
Update 8/7/09
I had all my medical work done this week. I had scans done from head to knee in nuclear medicine.
Then the radiologist did a neck thru butt spect of my body. That is the area where carcinoid tumors are more likely to show. A spect goes around you and creates a 3-D picture. The radiologists are doing fewer spects of my body--I guess they see how much my insurance is willing to pay and have toned things down. This time there was 1 spect done 24 hours after i was injected with radioactive Octreotide; usually one is done at 4 hours, also. Plus, the technician did a 300 degree view, instead of 360 degrees. I suppose that is enough to show the doctor what he needs to know. Usually nothing shows up in the spects to show them where my cancer is: the tumors are too small.
I also had my monthly blood drawn: cbc with differential, complete metabolic panel, gastrin, and Chromogranin A. The last two are markers for my cancer. The CgA has been going down, but the gastrin is going up.
Lastly, I got my month-long shot of Octreotide or Sandostatin. So I don't have to give myself shots every 8 hours.
Pray for me because i require so much sleep now. I thought it was just my late-night hours, but last night i slept from midnight to 7 am and was sleepy again at 10:30am. I stayed awake until 1:30pm and slept until 5 pm. I can't do that and work.
When my blood is checked, my random sugar is at 96 or 97. The blood test is usually a few hours after a meal and the number is normal. I don't think the sleepiness is diabetes or hypoglycemia. Two months ago my Doctor checked my insulin level and it was normal. Carcinoid tumors can give off insulin, glucagon, gastrin and other chemicals. The tumors are endocrine tissue.
In a week I will let you know what the doctors say.
Love,
Sharon
Then the radiologist did a neck thru butt spect of my body. That is the area where carcinoid tumors are more likely to show. A spect goes around you and creates a 3-D picture. The radiologists are doing fewer spects of my body--I guess they see how much my insurance is willing to pay and have toned things down. This time there was 1 spect done 24 hours after i was injected with radioactive Octreotide; usually one is done at 4 hours, also. Plus, the technician did a 300 degree view, instead of 360 degrees. I suppose that is enough to show the doctor what he needs to know. Usually nothing shows up in the spects to show them where my cancer is: the tumors are too small.
I also had my monthly blood drawn: cbc with differential, complete metabolic panel, gastrin, and Chromogranin A. The last two are markers for my cancer. The CgA has been going down, but the gastrin is going up.
Lastly, I got my month-long shot of Octreotide or Sandostatin. So I don't have to give myself shots every 8 hours.
Pray for me because i require so much sleep now. I thought it was just my late-night hours, but last night i slept from midnight to 7 am and was sleepy again at 10:30am. I stayed awake until 1:30pm and slept until 5 pm. I can't do that and work.
When my blood is checked, my random sugar is at 96 or 97. The blood test is usually a few hours after a meal and the number is normal. I don't think the sleepiness is diabetes or hypoglycemia. Two months ago my Doctor checked my insulin level and it was normal. Carcinoid tumors can give off insulin, glucagon, gastrin and other chemicals. The tumors are endocrine tissue.
In a week I will let you know what the doctors say.
Love,
Sharon
Thursday, August 6, 2009
Why "Live Like You were Dying" Doesn't Work
When I first heard the song by Tim McGraw about a man who found out he was dying and decided to do everything he wanted in his remaining months on Earth, I thought it was a nice song.
However, I could see one real problem: (1.) Living like you were dying would be really expensive. The man went sky diving, etc., etc. Doing all the fun things you ever wanted to do and visiting all the places you wanted to see could cost thousands of dollars. What if you didn't die soon? You would have to pay all the bills! It works out OK if you have a large life insurance policy, but you have to croak within a couple months. What if the doctors are able to extend your life?
Upon further reflection, I found another flaw in the theory. (2.) It's based on the belief that you have to see all this good stuff on Earth because it's the best stuff you're ever going to see. Wrong! Heaven has much better stuff. So there's no pressure to run around and see everything. I used to feel regret when I would see the title "Five Places to See Before You Die" on AOL, knowing I would never get to those exotic locales. Now it doesn't bother me. I know I will see much more splendid things. The only thing that bothers me is that evidently there will be no ocean in heaven. Will there be a large lake?
After running around doing things this summer because I might be ill next year, I can also tell you that living like you were dying is (3.) exhausting. If I go to the beach one day, I sleep 4 hours the next afternoon. Last night I slept from 1:00 or 2:00 am until 6:00 am; this afternoon I slept from 12 noon until 5 pm. I have to stop staying up late! My body thinks I'm supposed to have 2 sleeps: one at night and one during the day. Of course, in the song the "dying" man doesn't have those problems. He just goes everywhere he wants.
But then again, I did get to see David Crowder*Band in Monterey last Thursday. They were at the northern Spirit West Coast, not the one in Del Mar. So we went to Monterey for the first time in years and had a great time. The maid at the hotel probably wondered about us. We never left the room until after 1:00 pm. I didn't even get out of bed until 11:00, but we saw some good shows.
However, I could see one real problem: (1.) Living like you were dying would be really expensive. The man went sky diving, etc., etc. Doing all the fun things you ever wanted to do and visiting all the places you wanted to see could cost thousands of dollars. What if you didn't die soon? You would have to pay all the bills! It works out OK if you have a large life insurance policy, but you have to croak within a couple months. What if the doctors are able to extend your life?
Upon further reflection, I found another flaw in the theory. (2.) It's based on the belief that you have to see all this good stuff on Earth because it's the best stuff you're ever going to see. Wrong! Heaven has much better stuff. So there's no pressure to run around and see everything. I used to feel regret when I would see the title "Five Places to See Before You Die" on AOL, knowing I would never get to those exotic locales. Now it doesn't bother me. I know I will see much more splendid things. The only thing that bothers me is that evidently there will be no ocean in heaven. Will there be a large lake?
After running around doing things this summer because I might be ill next year, I can also tell you that living like you were dying is (3.) exhausting. If I go to the beach one day, I sleep 4 hours the next afternoon. Last night I slept from 1:00 or 2:00 am until 6:00 am; this afternoon I slept from 12 noon until 5 pm. I have to stop staying up late! My body thinks I'm supposed to have 2 sleeps: one at night and one during the day. Of course, in the song the "dying" man doesn't have those problems. He just goes everywhere he wants.
But then again, I did get to see David Crowder*Band in Monterey last Thursday. They were at the northern Spirit West Coast, not the one in Del Mar. So we went to Monterey for the first time in years and had a great time. The maid at the hotel probably wondered about us. We never left the room until after 1:00 pm. I didn't even get out of bed until 11:00, but we saw some good shows.
Subscribe to:
Posts (Atom)