Today at 9:00 was my labs. Afterwards we journeyed to see Dr. Linette. The visit was quite productive. As you can see from the previous blog, Dave is doing some in depth research on cancer, not just on nutrition but on many medical journals, Temodar information, and all the other stuff that goes along with this journey. We are becoming well versed in the little "c". Someone last week at Siteman even asked him if he was a scientist. Dave likes to say he is getting his PhD in nutrition through the school of hard knocks. Amen to that! JoAnn, Dr. Linette's nurse, did say that we are one of the few that come in with LOTS of questions & a binder of information. She said it is quite rare for anyone to pursue this like we are. Poor Dr. Linette, he will have to schedule more time for my appointments. He has a live wire on his hands! He will get to know me before this is all over. I am already looking forward to getting to know him. His wife is a scientist. How interesting!
OK - This is what was discussed at the appointment. In regards to the chemo and radiation concurrently:
1. He stated that if it works for the most aggressive tumor there is reason to believe it will work for mine. No promises though. Cancer is so complex and unique to EACH patient.
2. We also asked, after researching the Temodar website, about being able to do a starting/step-up dose with my chemo treatment after the radiation treatment. He said that the 280 mg. is the step-up dose for my first month of a 5 day dosage. The next month (5 day dose) will increase to 360 mg. and continue for a whole year. At first I was disappointed. Dr. Linette explained further . . . that if my body does not tolerate the higher dosage that we will work to find a lesser dose that is tolerable. At that point my mind was thinking OK . . . "do I pray for terrible side effects or do I not?" Of course, I will pray for hardly any or NO side effects from the higher dosage. It is the blood count that they will be most worried about. More specifically - myelosuppression ie: bone marrow concerns. I say "Me too!"
It is known that towards the end of the 6 week radiation/chemo treatment that constipation could occur. It is most prevalent in the 5 day dosage after radiation due to higher chemo intake. Yes, I guess you will need to pray for my bowels. A little humbling for me. (Yes, you can laugh) God even cares about my bowels. - Lovely!
3. Yes, Dr. Linette said that we will discontinue after a year if all looks well. I told him "You are wonderful". I had assumed he would want to go as long as 2 years. It is dependent on the MRI's. He stated that some patients want to continue for the rest of their lives. I confirmed with him that I will NOT be one of THOSE patients (due to increased risk of leukemia in the years to come). I guess those patients use it as a pacifier. If all looks good why rock the boat? The way I look at it - Cancer has already rocked my boat. At one point I thought it might tip over with my emotions. I also BELIEVE in the flax oil nutrition. It will continue to be a life change for me along with the family. It can only help with the conventional treatment.
4. MRI was discussed. Looks good. A little shadow effect but, that is probably scar tissue from the surgery. The cavity was nice. I guess you could say I take great pictures inside and out. : ) Got to find some humor in all of this today! My brain is beautiful!
5. A praise- Dr. Linette is very kind, gentle & really thinks prior to speaking (unlike his patient). He is showing wisdom. Quite scholarly. I am glad he is over my care at this time. I myself am already on the 5th question while he is still processing the 1st question.
We are still slated to do a dry run on December 29. We will officially start the toxin/Temodar and radiation on January 2. I will have doctors appointments on every other Tuesday with Dr. Linette and every Wednesday with Dr. Simpson to discuss treatment and to follow my body's response. I will also have blood drawn every other week. I asked the parking people if they give parking passes. They thought I was quite odd. I just thought if I am going to be down at Barnes that often I might as well have a parking pass if the price is right. My philosophy about Barnes Hospital - they do not encourage visitors if they charge for the parking. By the time someone parks their car, walks the bridge above the street, finds a elevator, finds the room they are supposed to be in, gets treatment or visits someone in the hospital - the hour has passed. I am frugal. After MY appointments I run the over the bridge to get to the parking people so my time doesn't lapse any more. Yes, I run without knocking someone over. I am sure it is a sight to see. I think people think I am just late to an important event. (They are right- the parking people are my important event for the day) Some of the offices do validate for half. Some give you a 2 hour pass. I need 5 hours with all the stuff they want to do. My life is down at Barnes all of January and 2 weeks into February. On a side note: I sometimes try to get a deal with the parking people. I like a good deal you know - I shop at Goodwill in my freetime & I love eBay. Sometime ask me how I swindle for a good deal. My home is filled with good deals.
That is all I have for now! Today was a good day!