We had a great time at the coast. Mostly we bummed around the condo and went to the beach and on a couple drives. It was a good, relaxing weekend....if only for that reason I'm glad I didn't have surgery last week because we wouldn't have gone to the beach then!
Still sticking to the protocol. Jeanah is getting real good at being creative with stuff and we're going to Bob's Red Mill this afternoon to see what types of baking mixes we can use rather than your traditional flours (barley, rye, oats, wheat, spelt) or even rice flour. These have complex carbs I'm not supposed to have very often.
Still feelin' good...just hoping the Swine Flu doesn't kill us all before I'm able to test my cancer again...
Monday, April 27, 2009
Friday, April 24, 2009
On Beach 53 in the Philippines
Jeanah and I have been talking about going to the Philippines next winter for vacation and spending some time on the beach...
Well, we're close to that this weekend.
1) We're going to Neskowin (on the Oregon Coast, just north of Lincoln City)
2) I just got the result of a cancer test that we sent away to the Philippines. This test is to see whether I have cancer and whether the cancer is growing, etc. It was developed by Dr. Navarro in the Philippines and very few people do the test in the USA because they are setup to do tests on blood serum rather than urine. There are many places that say the urine test (the one I just did) is more accurate, and indicates cancer sooner.
Anyway, it's less expensive and easier to send the test to the Philippines than to someplace in the USA where it is done.
So, my number was (+4, 53) which means that with a confidence of +/- 4, my HCG count is 53. They say a Zero means no likelihood of cancer, 0-49 is doubtful/unlikely that there is cancer, and 50+ is indicative of active cancer. This test was done prior to starting on the Budwig protocol and dietary changes.
We will be sending another sample in about 6 weeks. It will be interesting to see what happens with that test.
Dr. Navarro warns that this test, although accurate, should be done in conjunction with CT scan and biopsy if possible. What we want as of about June 1st is: 1) An HCG indicator number of under 50 2) No CT indication of cancer 3) A biopsy that shows no cancer (this will be the most difficult to get, I think, because it will require another sigmoidoscopy. "they" may be hesitant to do this since we already have a cancer diagnosis...we'll see...)
Anyway, the 53 number is encouraging in that we're so close to the 0-49. The "Cancer Free" book author said he has seen people with numbers up to 1000 and they have become cancer free...
Love you all, and have a great weekend!
Well, we're close to that this weekend.
1) We're going to Neskowin (on the Oregon Coast, just north of Lincoln City)
2) I just got the result of a cancer test that we sent away to the Philippines. This test is to see whether I have cancer and whether the cancer is growing, etc. It was developed by Dr. Navarro in the Philippines and very few people do the test in the USA because they are setup to do tests on blood serum rather than urine. There are many places that say the urine test (the one I just did) is more accurate, and indicates cancer sooner.
Anyway, it's less expensive and easier to send the test to the Philippines than to someplace in the USA where it is done.
So, my number was (+4, 53) which means that with a confidence of +/- 4, my HCG count is 53. They say a Zero means no likelihood of cancer, 0-49 is doubtful/unlikely that there is cancer, and 50+ is indicative of active cancer. This test was done prior to starting on the Budwig protocol and dietary changes.
We will be sending another sample in about 6 weeks. It will be interesting to see what happens with that test.
Dr. Navarro warns that this test, although accurate, should be done in conjunction with CT scan and biopsy if possible. What we want as of about June 1st is: 1) An HCG indicator number of under 50 2) No CT indication of cancer 3) A biopsy that shows no cancer (this will be the most difficult to get, I think, because it will require another sigmoidoscopy. "they" may be hesitant to do this since we already have a cancer diagnosis...we'll see...)
Anyway, the 53 number is encouraging in that we're so close to the 0-49. The "Cancer Free" book author said he has seen people with numbers up to 1000 and they have become cancer free...
Love you all, and have a great weekend!
Saturday, April 18, 2009
Got Milk? (NO)
In the past 10 days we have completely changed the way we eat. It has been kinda fun and really has made us think about the way Americans generally eat and how we were hurting our bodies before with too much animal protein and not enough fiber. I have been less hungry and have felt better in the past few days than I can remember ever feeling...
Before, when we would diet, if work was having pizza on Friday or something like that, I would get a real hunger pang and NEED to have some. Yesterday, they had pizza for a birthday party and I was easily able to bypass.
This is all to say that I really do believe my body is responding in some fashion to this new strategy. I haven't lost any weight, but it's only been 10 days. I can feel that I'm FEELING better though and that's a good start.
Please continue to pray that the protocol will shrink the tumor into oblivion. This is what we need to happen in the next 8 weeks so it will be a no-brainer whether to have surgery or not.
Love you all!
Before, when we would diet, if work was having pizza on Friday or something like that, I would get a real hunger pang and NEED to have some. Yesterday, they had pizza for a birthday party and I was easily able to bypass.
This is all to say that I really do believe my body is responding in some fashion to this new strategy. I haven't lost any weight, but it's only been 10 days. I can feel that I'm FEELING better though and that's a good start.
Please continue to pray that the protocol will shrink the tumor into oblivion. This is what we need to happen in the next 8 weeks so it will be a no-brainer whether to have surgery or not.
Love you all!
Tuesday, April 14, 2009
Course Diversion or Delay
After reading about the proposed surgery and discussing it with the surgeon (yesterday) we have discovered that there is a "9-22% chance" of some pretty unacceptable permanent collateral damage. These include potential loss of bladder control and impotence. Granted, these are better than death, but so is a poke in the eye with a sharp stick. I wish they would have told me about this weeks and weeks ago so I would have known about it. I had to find out about it on the internet, and then confirm this with the surgeon.
This has caused us to really take a step back and consider what exactly we're doing here. We have done extensive research (Jeanah has been a reading machine...and if you know Jeanah, you know how fast she can read). I have read the summary portions of things she has read, including a great book called "Cancer Free" written by the husband of a lady who died of cancer in 1994. He was frustrated with the cancer treatment "machine" we have today.
Anyway, the gist of this is he did a LOT of research and came to the conclusion that the best treatment of cancer is the Johanna Budwig regimine. This is what I have started in the past week. Just google Dr. Johanna Budwig and you will find MANY sites to read about it.
I discussed delaying the surgery with Dr. Lee yesterday. He says it is "OK" to delay until mid-June or so. We are going to do this and give the Budwig protocol a chance to work and clear my cancer. If we can do this, and eliminate the need for surgery, great. If not, we can do surgery, but we are hoping and praying surgery will not be needed.
The Budwig protocol may sound kinda "pie-in-the-sky" but there is actually very good science behind it. Including some input by Linus Pauling, and being a good Oregon State fan and graduate, I of course know about the contributions he made to science and medicine.
Yes, I'm planning to meet with both my oncologists to discuss this. I will also meet with a naturopathic doctor who treats cancer to get their input. It's good to have options!
If you are the reading type, and would like to read the "Cancer Free" book, contact me and I can email you the PDF.
This has caused us to really take a step back and consider what exactly we're doing here. We have done extensive research (Jeanah has been a reading machine...and if you know Jeanah, you know how fast she can read). I have read the summary portions of things she has read, including a great book called "Cancer Free" written by the husband of a lady who died of cancer in 1994. He was frustrated with the cancer treatment "machine" we have today.
Anyway, the gist of this is he did a LOT of research and came to the conclusion that the best treatment of cancer is the Johanna Budwig regimine. This is what I have started in the past week. Just google Dr. Johanna Budwig and you will find MANY sites to read about it.
I discussed delaying the surgery with Dr. Lee yesterday. He says it is "OK" to delay until mid-June or so. We are going to do this and give the Budwig protocol a chance to work and clear my cancer. If we can do this, and eliminate the need for surgery, great. If not, we can do surgery, but we are hoping and praying surgery will not be needed.
The Budwig protocol may sound kinda "pie-in-the-sky" but there is actually very good science behind it. Including some input by Linus Pauling, and being a good Oregon State fan and graduate, I of course know about the contributions he made to science and medicine.
Yes, I'm planning to meet with both my oncologists to discuss this. I will also meet with a naturopathic doctor who treats cancer to get their input. It's good to have options!
If you are the reading type, and would like to read the "Cancer Free" book, contact me and I can email you the PDF.
Friday, April 10, 2009
Wisdom and Comfort...PLEASE!!
After we left the surgeon's office last week, neither of us felt real comfortable, but we didn't know we both were feeling this way until Thursday. We are feeling a bit rushed by the surgery prospect on April 22. The entire appointment on Tuesday felt rushed, and just didn't feel...right.
We will be contacting Dr. Lee to discuss this next week and to discuss postponing surgery, maybe as much as 8-10 weeks...or maybe entirely.
In the mean time, we have been doing research online and in books to see what other alternatives there are at this point.
There are some options!! We have to do more research, but we feel like holding off on surgery for a bit to see what we can find out about these other methods of getting rid of cancer.
If, after discussing with Dr. Lee next week, we still feel comfortable with postponing the surgery, we probably will do it.
Basically, we don't want to do the surgery unless it gives a better survival chance than any of the other alternatives. We are going to treat it as the last resort because of potential collateral damage that can happen, and the lifestyle change it would require.
More to come...
We will be contacting Dr. Lee to discuss this next week and to discuss postponing surgery, maybe as much as 8-10 weeks...or maybe entirely.
In the mean time, we have been doing research online and in books to see what other alternatives there are at this point.
There are some options!! We have to do more research, but we feel like holding off on surgery for a bit to see what we can find out about these other methods of getting rid of cancer.
If, after discussing with Dr. Lee next week, we still feel comfortable with postponing the surgery, we probably will do it.
Basically, we don't want to do the surgery unless it gives a better survival chance than any of the other alternatives. We are going to treat it as the last resort because of potential collateral damage that can happen, and the lifestyle change it would require.
More to come...
Tuesday, April 7, 2009
Artificial Anus? Who Knew!?
It has been confirmed that I will need surgery. The surgeon said the tumor has shrunken considerably, but there is no reason to wait any longer, so we have scheduled Wednesday, April 22, 2009 at 9:00am for the surgery. It will be at Providence Hospital on 49th and Glisan, downtown Portland. I will also need to be off work on 4/21 as there is some "preparation" to do and I won't be able to drink the preparation fluid and work in the same day.
As far as I know at this point, I will be in the hospital for 5-7 days. I'm guessing it will take another week or so to recover so I'm guessing I may be out of commission until about May 11 or so. I then have an appointment on May 12 with my Oncologist to start another round of Chemotherapy just to make certain we get all of it!
The good news is that there is very high probability (around 90%) that what we are doing, including surgery, will cure the Cancer and I won't have to worry about it spreading to my Liver or Lungs which is how people die from Rectal Cancer.
The bad news is the tumor is still too close to the end of the track and I will need to have a colostomy performed. This is not the end of the world, and is what I've kind of expected as the predicted result, although it really isn't the news we wanted today.
I will be seeing a "stoma" nurse sometime in the next week to discuss what this will mean down the line.
Also, as an encouragement, there are real advances in the "artificial anus" technology field recently...who knew!? The surgeon said once I am confirmed "cancer free" (whatever that means) I would be a prime candidate for that type of procedure because of my age.
Thanks again for your thoughts and prayers and caring words. They do wonders for my soul.
As far as I know at this point, I will be in the hospital for 5-7 days. I'm guessing it will take another week or so to recover so I'm guessing I may be out of commission until about May 11 or so. I then have an appointment on May 12 with my Oncologist to start another round of Chemotherapy just to make certain we get all of it!
The good news is that there is very high probability (around 90%) that what we are doing, including surgery, will cure the Cancer and I won't have to worry about it spreading to my Liver or Lungs which is how people die from Rectal Cancer.
The bad news is the tumor is still too close to the end of the track and I will need to have a colostomy performed. This is not the end of the world, and is what I've kind of expected as the predicted result, although it really isn't the news we wanted today.
I will be seeing a "stoma" nurse sometime in the next week to discuss what this will mean down the line.
Also, as an encouragement, there are real advances in the "artificial anus" technology field recently...who knew!? The surgeon said once I am confirmed "cancer free" (whatever that means) I would be a prime candidate for that type of procedure because of my age.
Thanks again for your thoughts and prayers and caring words. They do wonders for my soul.
Tuesday, March 31, 2009
The Scoop on the Down Low
Today we saw Dr. Chang, the medical oncologist. We know a little more than we did before, but not much. The CaT scan last week doesn't indicate any metastatic indicators, but we are waiting on a comparison between the CaT scan last week at St. Vincent's with the CaT scan in December at Meridian Park. Dr. Chang is still concerned about some visible "hot spot" nodes in the Meridian Park CaT scan. He wants to see what has happened with these when they compare the two.
Here are some possible scenarios:
1) If the nodes are smaller or gone: We will assume these nodes also may be cancer and that they responded to the low dosage of Chemo I was on during radiation. We will do surgery on the local tumor in the rectum and remove it. Then will do aggressive Chemo treatment to make certain all possible peripheral cancer is taken care of.
2) If the nodes are the same (this sounds like the best): They may or may not be cancer, but hoping not. Still, will do surgery and Chemo, same as above just to be sure.
3) If the nodes are larger: We will assume they are cancerous. We will re-evaluate the wisdom of having surgery at this point because if there are other growing tumors we would need to weigh the risk of having surgery with the risk of leaving the local tumor there for a while and seeing how it responds to heavier dosage of Chemo along with the other tumors. In other words, if we were certain there were other growing cancers, we would not necessarily do surgery because once the genie is out of the bottle and growing, it may not make sense to go through the pain of surgery at this time.
It sounded like because the second CaT scan didn't indicate metastatic evidence, Dr. Chang was leaning toward option #1 or #2 above. Long term, these are better because they give a chance at cure rather than just treatment.
I have to reschedule the appointment with the surgeon, hopefully for later this week or next week. We want to have the CaT scan comparison in his hands so he can also help us make judgment.
At this point, it seems like a surgery would be possibly 4-6 weeks from now...so around mid-May (happy birthday to me :) We are still very uncertain exactly how involved the surgery will be and how long it will knock me down for.
I'm feeling pretty well now and have lost a little weight, so that's good. Trying to be more active and get stronger in the next 4-6 weeks will be important!
The side effects from radiation are about 90% healed I'd say, but the skin feels different from the old...it's smoother and, well, just different. Hopefully it continues to heal and get back to normal.
That's all for now...see ya!
Here are some possible scenarios:
1) If the nodes are smaller or gone: We will assume these nodes also may be cancer and that they responded to the low dosage of Chemo I was on during radiation. We will do surgery on the local tumor in the rectum and remove it. Then will do aggressive Chemo treatment to make certain all possible peripheral cancer is taken care of.
2) If the nodes are the same (this sounds like the best): They may or may not be cancer, but hoping not. Still, will do surgery and Chemo, same as above just to be sure.
3) If the nodes are larger: We will assume they are cancerous. We will re-evaluate the wisdom of having surgery at this point because if there are other growing tumors we would need to weigh the risk of having surgery with the risk of leaving the local tumor there for a while and seeing how it responds to heavier dosage of Chemo along with the other tumors. In other words, if we were certain there were other growing cancers, we would not necessarily do surgery because once the genie is out of the bottle and growing, it may not make sense to go through the pain of surgery at this time.
It sounded like because the second CaT scan didn't indicate metastatic evidence, Dr. Chang was leaning toward option #1 or #2 above. Long term, these are better because they give a chance at cure rather than just treatment.
I have to reschedule the appointment with the surgeon, hopefully for later this week or next week. We want to have the CaT scan comparison in his hands so he can also help us make judgment.
At this point, it seems like a surgery would be possibly 4-6 weeks from now...so around mid-May (happy birthday to me :) We are still very uncertain exactly how involved the surgery will be and how long it will knock me down for.
I'm feeling pretty well now and have lost a little weight, so that's good. Trying to be more active and get stronger in the next 4-6 weeks will be important!
The side effects from radiation are about 90% healed I'd say, but the skin feels different from the old...it's smoother and, well, just different. Hopefully it continues to heal and get back to normal.
That's all for now...see ya!
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