Tuesday, December 19, 2006

Today's Visit with Dr. L

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!
Kate

5 comments:

Anonymous said...

Kate,

I have been following your blog for sometime, trying to think of some useful information to tell you. You see, I am just finishing my chemo and radiation for Hodgkin's Lympoma and while it is different, there are some practical things I could tell you.

Here it is: the most gentle medicine you can take for your bowel problems (which will occur!) is colace - not a laxative. Wal-mart even has a very good generic form of this and you can take up to four a day. They help tremendously. Also, pears are a very good source of soluble fiber which is also very helpful for that problem.

A good resource for your cancer nutrition is a book called "Eating Well Through Cancer." It helps choose foods that will help to ease the side effects of chemo and radiation.

You may get mouth sores from the chemo - ask your doctor for a prescription of "Magic Mouthwash" for the pain and five times daily swishing with warm water, salt, and baking soda will really help to prevent that. Ice chips and popsicles are good to ease a sore mouth as well.

Drink a lot of water as this will help the drugs pass through your system quicker.

If your doctor has not given you a list of good wig shops, I can help you out there too!

If you ever have questions, I didn't have a brain tumor, but I do know about side effect management. Do not hesitate to ask.

Rebecca Farquhar
member of Covenant Presbyterian church
fellow cancer fighter

Laura Joback said...

Hey! Fellow thrifty gal! Read up on Dave's research on the nutrition--he is such at GEM to be doing so much delving and scrounging for information to aid you! What a blessed woman you are! I will DEFINATEY pray for your bowels...bless 'em, Lord! You name it, it'll be covered in prayer, mah deah! Love ya! Gotta run! Somebody's seizuring! Laura

Bakers said...

your authinticity is incredible! I don't know if you remember - Partners, 6 years ago we prayed for our oldest daughters' bowels. Being born preemie, she did not have a bowel movement for about 10 days - we prayed, she blew!!! The nurse said she had never had to clean an incubator quite like that before. While I am praying for you - I'll pray that yours is not quite as...explosive! LOL sorry to be so blunt - thought you could use a laugh!

Tabatha

Anonymous said...

Kate, you make me smile! Here are my two tips for parking...although it is a bit farther of a walk you can park on the street on the opposite side of the little park and walk through the garage (it connects all the way under the park to that street on the other side). Of course, I realize that you may certainly not be up to a hike so my second tip is borrow a BIG vehicle. We have a raised roof conversion van that doesn't fit in the garage. They have to give me free surface parking because there is no where else for me to park. Serendipity!
On another note I love you spirit and will continue to pray that it shines brightly throughout treatment!
Lisa Kelley

Nicole Callan said...

Kate, I've got a friend who works at Wash U Med School in the movement disorders area; I've got an email in to her to see if she can help you with parking; the doc she works with has a reserved spot and she may be able to tell you when it's open--or maybe it's always open
How about a Metrolink pass, if you can park at a free lot? I'm not sure where you live, but Shrewbury has a really nice free lot--close to where Connie Stimpson used to live
Nicki
(Duke of Earl)