Just a quick note to let everyone know some good news.
I spoke to my oncologist today to get my results from the tumor markers he had done about a week ago.
Just to let you all know, I have two main markers taken, CEA and CA 19-9. The normal range for CEA is between 0 - 2.5. The normal range for CA 19-9 is 0 - 35.
Right before my surgery, my CEA was 48 and the CA 19-9 was over 200.
After having my spleen removed, my CEA is now 5.3 and CA 19-9 is 42!! Both still slightly high, but this is the lowest then have been (without any chemo) in about 2 years.
Seems like the spleen was a big part of the problem.
As for my recovery, I'm getting a little better every day. Still not sure what the next steps will be. My oncologist has reached out to another medical oncologist and to Dr. Loggie for their opinions. When I know what is going to happen next, I'll let you all know.
For now, I'll let my body continue to heal, work on getting my strength back, and worry about chemo later.
Kevin
Monday, August 24, 2009
Tuesday, August 11, 2009
Post Op - Day 14
Two weeks ago, I was on the operating table having my spleen removed.
One week ago, we left Omaha, NE to come home.
As you know from previous posts, it was a fairly quick hospital recovery. The trip home was, thankfully, uneventful.
The past week has been one of resting, healing and generally taking things easy.
Yesterday, I had the drain pulled (finally). And thanks to Dr. Gruenberg for that. I must admit, I was very scared about the pain. I have had drains pulled before, and to say it hurt like the dickens, would be an understatement. I was all prepared for the pain, but amazingly, the drain was pulled before I was even aware of it. No pain whatsoever.
So what's next? I need to call my oncologist to discuss the use of more chemo. After we talk to him, I'll post to let you all know what we decide.
Until then, I continue to take things easy, and continue to let my body heal from the surgery.
I would like to thank all of you again for the support, love and prayers. The emails, cards, comments have all been wonderful. Words can never express how much all of those mean to us.
With love and gratitude,
Kevin
One week ago, we left Omaha, NE to come home.
As you know from previous posts, it was a fairly quick hospital recovery. The trip home was, thankfully, uneventful.
The past week has been one of resting, healing and generally taking things easy.
Yesterday, I had the drain pulled (finally). And thanks to Dr. Gruenberg for that. I must admit, I was very scared about the pain. I have had drains pulled before, and to say it hurt like the dickens, would be an understatement. I was all prepared for the pain, but amazingly, the drain was pulled before I was even aware of it. No pain whatsoever.
So what's next? I need to call my oncologist to discuss the use of more chemo. After we talk to him, I'll post to let you all know what we decide.
Until then, I continue to take things easy, and continue to let my body heal from the surgery.
I would like to thank all of you again for the support, love and prayers. The emails, cards, comments have all been wonderful. Words can never express how much all of those mean to us.
With love and gratitude,
Kevin
Monday, August 03, 2009
Doctor's Visit Update, and We Get to Go Home
Well, after another restless night of sleeping for a couple of hours, waking in pain, going to the bathroom, taking an oxycodone, then going back to sleep to start the process all over again, I finally got out of bed about 8 AM.
Roni was already up, and had already eaten breakfast. So while she was getting ready for the day, I went down to eat. I actually ate two slices of french toast, and had a half cup of Best Western coffee. One of the problems I've had in the recovery was getting my appetite back, but it is coming back, slowly but surely.
About 9:30 AM we headed to the doc's, thinking it might take awhile as I am walking much slower these days. But I did pretty well and we got there about 15 minutes early. The nurse came out and got me, took my vitals (all good), weighed me (about the same weight as a week before) and then it was only a matter of waiting for Dr. Loggie. He was in the middle of a consultation with a couple that we had actually met the night before, and spent a couple of hours with, just talking about having cancer. We were sure they getting smacked up the head with a very big reality stick, so wanted Dr. Loggie to take all the time he needed. In the meantime, the nurse gave us the initial pathology report and the surgical report to read. That's when we learned some very interesting (notice I didn't say "good"?) things.
We knew that the doctor had to leave some tumor, what we didn't know was that tumor contained signet ring cell. That is the most aggressive form of this cancer. We certainly weren't expecting that. This was the tumor that the doctor was able to see, but if he took it, it would require taking too much small bowel, which would mean a big decrease in quality of life. Fortunately, the doctor believes it is in such a place that it will not cause any problems for a long time.
Finally the doctor came in, and the first thing he asked is if I would be part of a research on signet ring cells in patients with colo-rectal/apendix cancer. He explained that they are learning some new things about how signet ring cells work, and how they are different in different patients. I think that because I had it before, and am still alive, he thinks my case is worth studying.
The other thing that we were hoping wasn't going to have to happen was more chemo. But it looks like since the tumor had invaded the spleen, and there was metastasis in a couple of lymph nodes (and because of the signet ring), it looks like chemo will be on the menu. We will discuss what would be the best regimen with my oncologist at home in a week or so.
The other disappointing part of the visit was that the drain they put in during surgery was still draining fluids, so they didn't pull that. It is difficult to take a shower with that, apart from the discomfort of having this tube sticking out of your stomach. Hopefully the fluid output will go down, and I can have it removed at my oncologist's office later this week.
So, that is the news for now. The cancer is still there, and again, the trick is not to let it take over our lives. We still have some uncertainty about what our future looks like. We have some disappointments, but we also plan on having some fun too. We plan on having some adventures, and good times with friends and family. We just need to learn how to treat the cancer, and still live life.
Roni was already up, and had already eaten breakfast. So while she was getting ready for the day, I went down to eat. I actually ate two slices of french toast, and had a half cup of Best Western coffee. One of the problems I've had in the recovery was getting my appetite back, but it is coming back, slowly but surely.
About 9:30 AM we headed to the doc's, thinking it might take awhile as I am walking much slower these days. But I did pretty well and we got there about 15 minutes early. The nurse came out and got me, took my vitals (all good), weighed me (about the same weight as a week before) and then it was only a matter of waiting for Dr. Loggie. He was in the middle of a consultation with a couple that we had actually met the night before, and spent a couple of hours with, just talking about having cancer. We were sure they getting smacked up the head with a very big reality stick, so wanted Dr. Loggie to take all the time he needed. In the meantime, the nurse gave us the initial pathology report and the surgical report to read. That's when we learned some very interesting (notice I didn't say "good"?) things.
We knew that the doctor had to leave some tumor, what we didn't know was that tumor contained signet ring cell. That is the most aggressive form of this cancer. We certainly weren't expecting that. This was the tumor that the doctor was able to see, but if he took it, it would require taking too much small bowel, which would mean a big decrease in quality of life. Fortunately, the doctor believes it is in such a place that it will not cause any problems for a long time.
Finally the doctor came in, and the first thing he asked is if I would be part of a research on signet ring cells in patients with colo-rectal/apendix cancer. He explained that they are learning some new things about how signet ring cells work, and how they are different in different patients. I think that because I had it before, and am still alive, he thinks my case is worth studying.
The other thing that we were hoping wasn't going to have to happen was more chemo. But it looks like since the tumor had invaded the spleen, and there was metastasis in a couple of lymph nodes (and because of the signet ring), it looks like chemo will be on the menu. We will discuss what would be the best regimen with my oncologist at home in a week or so.
The other disappointing part of the visit was that the drain they put in during surgery was still draining fluids, so they didn't pull that. It is difficult to take a shower with that, apart from the discomfort of having this tube sticking out of your stomach. Hopefully the fluid output will go down, and I can have it removed at my oncologist's office later this week.
So, that is the news for now. The cancer is still there, and again, the trick is not to let it take over our lives. We still have some uncertainty about what our future looks like. We have some disappointments, but we also plan on having some fun too. We plan on having some adventures, and good times with friends and family. We just need to learn how to treat the cancer, and still live life.
Saturday, August 01, 2009
Getting Out of Hospital Today!
I'm so proud of Kevin. He summoned his "inner soldier", pushed himself all day yesterday and made huge improvements! He did the long hall walk 5 times yesterday and since last evening has been getting himself in and out of bed on his own and has been sitting up in a chair for most of his awake hours, which are increasing along with much greater alertness. I'll know when he's really beginning to feel like himself again when he asks me to hand over the laptop. I think it won't be long now.
They will remove his neck IV port this morning, and we move into the hotel this afternoon. Monday morning we'll go to the clinic where he'll have the final foreign object -- a wound drain -- removed from his body. After Dr. L. looks him over on Monday he'll let us know when we can fly home. Home!!!!! Our own bed. Our peeps nearby. And home cooked meals courtesy of Iain and April!! (A thousand thanks for that wonderful gift.)
We are so grateful for the prayers that have been answered. Dr. L. said the platelet count has come way up, reinforcing the hypothesis that the enlarged spleen was the culprit. Now we wait to learn whether it was the sole cause of the elevated tumor markers as well.
Now our prayers shift from a speedy, complication-free recovery from surgery to ongoing quality of life. We pray that the results of the pathology report will not mean additional chemo and that the inoperable tumors will at the very least stay stable, or better yet, shrivel up and die! And no more surgeries. Ever!
Happy to be the bearer of good news,
Roni
They will remove his neck IV port this morning, and we move into the hotel this afternoon. Monday morning we'll go to the clinic where he'll have the final foreign object -- a wound drain -- removed from his body. After Dr. L. looks him over on Monday he'll let us know when we can fly home. Home!!!!! Our own bed. Our peeps nearby. And home cooked meals courtesy of Iain and April!! (A thousand thanks for that wonderful gift.)
We are so grateful for the prayers that have been answered. Dr. L. said the platelet count has come way up, reinforcing the hypothesis that the enlarged spleen was the culprit. Now we wait to learn whether it was the sole cause of the elevated tumor markers as well.
Now our prayers shift from a speedy, complication-free recovery from surgery to ongoing quality of life. We pray that the results of the pathology report will not mean additional chemo and that the inoperable tumors will at the very least stay stable, or better yet, shrivel up and die! And no more surgeries. Ever!
Happy to be the bearer of good news,
Roni
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