Thank God it's my birthday!! I want 39 more of them!! (at least). I went to Dr. Hansen, Radiation Oncologist, today. I did not get exactly the news I had anticipated. He did his examination and said the tumor has definitely shrunk some even from last time (2 months ago) but that it's probably done shrinking (it will only usually shrink for 1-3 months after radiation). He said while he can do more radiation, he would recommend I go for surgery at this point. He also said he could completely shrink the tumor with radiation, but that would almost certainly cause anal incontinence and could cause impotence. These are exactly the symptoms we are afraid of with surgery. A rock and a hard place...
His opinion was that the surgery will put the non-recurrence rate at about 90% while doing a bit more radiation and then doing more chemotherapy would only give a 65% chance of non-recurrence. Also, if what is there is indeed cancerous, there is a 0% chance of non-recurrence.
He is going to put me in contact with another colorectal surgeon to get a 2nd opinion about the surgery. I'm also going to see Dr. Crocenzi (medical oncologist, Dani Arthur's boss) on June 9 to see what he says. I have a CT scan scheduled for June 2. This will show activity of cells. If we only see the one "hot spot" that's good, and would mean the cancer has most likely not spread, but if there are others, we would probably opt out of surgery, because generally that would mean the cancer has metastacized, and surgery won't control it.
There is more data to gather and more people to chime in on various topics.
Please pray we will have a clear cut answer (pun intended) by mid-June that we feel comfortable with.
ENJOY THE BEAUTIFUL WEATHER GOD GAVE US TO CELEBRATE MY BIRTHDAY WEEKEND!!
Friday, May 22, 2009
Wednesday, May 13, 2009
The Good, The Bad, and The Ugly
We saw the Medical Oncologist yesterday for the first time in 6-weeks. He was a bit surprised that I hadn't had surgery yet, but after I explained to him how I wanted to give some alternative methods a chance, and that I'm not real hip on the potential side effects of the surgery, he indicated that possibly surgery is not the right choice in my case.
He said because of my size, and the fact that we're not 100% certain the cancer is contained inside the rectum and potential complications of surgery, he seems torn between doing surgery and not doing surgery in my case. Generally, he would always recommend surgery at this point, but since there are other circumstances at play, he "is OK with me not having surgery."
He said because I am having second thoughts about the surgery, he thinks we ought to consider the other option which is to do cleanup with radiation and chemo.
The way I understand the percentages of recurrence in his estimation are this:
1) If we just do diet change and general lifestyle modification at this point and nothing else, I probably have somewhere in the 80% chance range of not having a recurrence.
2) If I go for another "cleanup" round of radiation and chemo, my chances go up 5% or so. So we're probably around 85%. While this may have tough short-term side effects, there are not as many potential long-term side effects. There is some potential for regional nerve damage and other side effects similar to if you had a burn in the region.
3) If I go for surgery, the percentage of non-recurrence goes up to the 85-90% range, but would require a permanent colostomy, and would have around a 10-20% chance of permanent impotence and/or bladder control loss.
He said if we are going to do surgery, it should be done ASAP, or within the next 4 weeks because at this stage the longer we wait the more trouble there will be from scaring.
I am leaning heavily toward the first two options. Really the only downside to crossing off #3 would be if later on I have recurrence and regret that I did not have the surgery. However, on the flip side of that, I could have the surgery, they could remove the tumor (and my rectum and anus), do the pathology and not find any more cancer. That would really make me regret :)
In the weeks to come, I will be discussing these options with my 2nd opinion Medical Oncologist, my Radiation Oncologist, and my Naturopathic Doctor (my primary care physician). We are in a "data mining" operation right now and will not make a final decision until we have enough information to make a decision we can be comfortable with.
There is no black-and-white answer here. I just have to make a decision I feel most comfortable with and proceed from there.
As always, your thoughts, prayers, and encouragement are greatly appreciated.
He said because of my size, and the fact that we're not 100% certain the cancer is contained inside the rectum and potential complications of surgery, he seems torn between doing surgery and not doing surgery in my case. Generally, he would always recommend surgery at this point, but since there are other circumstances at play, he "is OK with me not having surgery."
He said because I am having second thoughts about the surgery, he thinks we ought to consider the other option which is to do cleanup with radiation and chemo.
The way I understand the percentages of recurrence in his estimation are this:
1) If we just do diet change and general lifestyle modification at this point and nothing else, I probably have somewhere in the 80% chance range of not having a recurrence.
2) If I go for another "cleanup" round of radiation and chemo, my chances go up 5% or so. So we're probably around 85%. While this may have tough short-term side effects, there are not as many potential long-term side effects. There is some potential for regional nerve damage and other side effects similar to if you had a burn in the region.
3) If I go for surgery, the percentage of non-recurrence goes up to the 85-90% range, but would require a permanent colostomy, and would have around a 10-20% chance of permanent impotence and/or bladder control loss.
He said if we are going to do surgery, it should be done ASAP, or within the next 4 weeks because at this stage the longer we wait the more trouble there will be from scaring.
I am leaning heavily toward the first two options. Really the only downside to crossing off #3 would be if later on I have recurrence and regret that I did not have the surgery. However, on the flip side of that, I could have the surgery, they could remove the tumor (and my rectum and anus), do the pathology and not find any more cancer. That would really make me regret :)
In the weeks to come, I will be discussing these options with my 2nd opinion Medical Oncologist, my Radiation Oncologist, and my Naturopathic Doctor (my primary care physician). We are in a "data mining" operation right now and will not make a final decision until we have enough information to make a decision we can be comfortable with.
There is no black-and-white answer here. I just have to make a decision I feel most comfortable with and proceed from there.
As always, your thoughts, prayers, and encouragement are greatly appreciated.
Monday, May 11, 2009
Move More!
So, now that we've kinda got the eating thing down, and we are doing very well at it, it's time I get to the exercise thing!
I don't always have the energy to exercise, but when I do, I need to JUST DO IT!
We have a stationary bike, and we have lots of yard work :) (right, Jeanah)
We see Dr. Chang, the Medical Oncologist tomorrow for a follow up. Last we talked with him, we were still planning surgery (6 weeks ago). Should be interesting to see what he has to say about the path we've chosen to this point! I'll let ya'll know how it goes! We're hoping there is a non-invasive way he can test to compare how much cancer I have in my body...
I don't always have the energy to exercise, but when I do, I need to JUST DO IT!
We have a stationary bike, and we have lots of yard work :) (right, Jeanah)
We see Dr. Chang, the Medical Oncologist tomorrow for a follow up. Last we talked with him, we were still planning surgery (6 weeks ago). Should be interesting to see what he has to say about the path we've chosen to this point! I'll let ya'll know how it goes! We're hoping there is a non-invasive way he can test to compare how much cancer I have in my body...
Tuesday, May 5, 2009
No News is Good News (they say)
...whoever "they" are...I hope "they" are right. We have just been pluggin' along with our nutritional approach and the Budwig protocol these last few weeks. It's going pretty well. We've learned to eat more simply and are learning some new things that help us get the nutrition we need without the stuff that can cause inflamation.
A long with the nutrition and Budwig, I am also taking A LOT of suplemental pills. I just counted them and, well, just for the morning, it's 36 pills. That's a considerable amount to swallow!
I'm feeling pretty well these days. Getting my strength back and feeling better each day. The last 2 weeks I battled a cold, but I think that's over and done with. My immune system is supposedly getting stronger. Hopefully it's strong enough to ward off any additional cancer stuff and even to destroy the cancer that currently exists along with the Budwig destroying the tumor as well.
Love ya'll!
A long with the nutrition and Budwig, I am also taking A LOT of suplemental pills. I just counted them and, well, just for the morning, it's 36 pills. That's a considerable amount to swallow!
I'm feeling pretty well these days. Getting my strength back and feeling better each day. The last 2 weeks I battled a cold, but I think that's over and done with. My immune system is supposedly getting stronger. Hopefully it's strong enough to ward off any additional cancer stuff and even to destroy the cancer that currently exists along with the Budwig destroying the tumor as well.
Love ya'll!
Monday, April 27, 2009
Sand, Surf, and Sunshine
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...
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...
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!
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