Bright and early tomorrow morning, I have an appointment to get the port in. Wiki says "a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times".
I've read such a mix of comments on getting the port, I'm not sure what to expect (pain and un-
comfort wise). But everyone says its worth it... I'll update tomorrow with my own experience...
Thursday, April 30, 2009
Monday, April 27, 2009
Wig Shopping
In anticipation of losing my hair, my sister and I went "shopping" (free) for wigs and head coverings today. We started at the Vic since I needed to get blood work done anyway. Picked up 2 wigs and a couple of different hats. Then went to the Guardian Angel room at HSC. They have a full time volunteer in the wig room, and she was wonderful (even though we hadn't made an appointment). Left there with a long curly red wig and a couple of hats - one of which is really a one-of-a-kind. My mother-in-law sews blankets that she donates. I will see if she can re-create a pattern for this hat and make some more... I also have some cute hats and bandanas from Karen's mom - donated by her friends down in Texas that missed her in their winter-getaway trailer park this year.
Saturday, April 25, 2009
Recovered from Surgery
Hi friends and family. The last couple of weeks have been good, spending the time getting healthy again (snow is gone, but summer sure isn’t here yet!) Lots of walking, even a few short runs. Read a few good books already.
Started physio for my arm, painful but should get all of my motion back. Cath calls herself a "physio-terrorist". Says if I can't be tough enough on myself with the exercises, to go back to see her. She says its 3 vessels that are "caught" in the scar tissue, and need to be massaged and stretched until they are freed.
Update - I heard later this is called 'cording' - for more info see http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
We met with the radiation oncologist, who was very nice and informative, but gave me an overwhelming amount of information about a clinical study he asked me to participate in. I had to make a decision the next day in order to do the prep work and start it within a specific timeframe from the surgery. This would have put the radiation before the chemo, among other differences, but it was just too much info with too little time, so I passed on that. I will go ahead with chemo as planned, and meet with the radiation oncologist again when chemo is done. There will likely be other clinical trials open at that time. So I’ll save your radiation education until then :)
The port goes in next Friday (May 1st) and the first chemo is the following week (May 7th). I’m starting to collect cute head coverings in preparation for the hair loss :(
Here’s something interesting – Karen's mom (who just finished chemo!) tells me that for the second set of chemo, they put your hands and feet on ice packs during the IV to stop it from circulating to your fingers and toes, since it can cause your nails to fall off. Lovely...
Enjoy our spring weather!
Beth
Started physio for my arm, painful but should get all of my motion back. Cath calls herself a "physio-terrorist". Says if I can't be tough enough on myself with the exercises, to go back to see her. She says its 3 vessels that are "caught" in the scar tissue, and need to be massaged and stretched until they are freed.
Update - I heard later this is called 'cording' - for more info see http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
We met with the radiation oncologist, who was very nice and informative, but gave me an overwhelming amount of information about a clinical study he asked me to participate in. I had to make a decision the next day in order to do the prep work and start it within a specific timeframe from the surgery. This would have put the radiation before the chemo, among other differences, but it was just too much info with too little time, so I passed on that. I will go ahead with chemo as planned, and meet with the radiation oncologist again when chemo is done. There will likely be other clinical trials open at that time. So I’ll save your radiation education until then :)
The port goes in next Friday (May 1st) and the first chemo is the following week (May 7th). I’m starting to collect cute head coverings in preparation for the hair loss :(
Here’s something interesting – Karen's mom (who just finished chemo!) tells me that for the second set of chemo, they put your hands and feet on ice packs during the IV to stop it from circulating to your fingers and toes, since it can cause your nails to fall off. Lovely...
Enjoy our spring weather!
Beth
Friday, April 3, 2009
Plans for chemo
Hi friends and family. Brad and I met with the oncologist (and team) this week. Lots of information to absorb (I’m getting a whole new education). They strongly recommended chemotherapy due to the aggressive nature of this particular cancer, and we’ve agreed to go that way. That will be followed by radiation. This gets my chance of re-occurrence back down to the same as anybody else. For those at work – this means I will likely be out for the rest of the year…
My arm is much better. I don’t have full use back but it’s getting closer, and the pain is a lot less.
Here’s the details on the chemo (which will be at the brand new Buhler Cancer Centre at the Vic):
6 treatments, one every 21 days. It takes 2-3 hours for each treatment (administered through an IV). A mixture of 3 drugs for the first 3 treatments, and a 4th drug by itself for the last 3 treatments. Blood work is always done a day or two before each treatment to ensure the white blood cells (fight infection) and platelet counts (help your blood clot) are back up to normal, otherwise they delay. For those already familiar with cancer treatments – it’s the FEC-D regimen (Fluorouracil, Epirubicin, Cyclophosphamide, Docetaxel), with all of the bad side effects included for free (although they do add in an anti-nausea drug).
So when does it start? More to learn. First is the MUGA scan – a test of your heart muscle to measure the strength of it pumping the blood. Both to make sure you are strong enough to start the treatment, and as a baseline to ensure its not affected as you go through treatment. The years of running should have my heart pretty strong to start out here! Next is the decision of how to get the chemo – our little veins aren’t strong enough to handle the chemicals, so the choice is a PICC in your bicep (with a short tube hanging out) or a PORT surgically implanted just below your collar bone. Both have a tube feeding through your vein into an area close to your heart. Both stay in place for the length of your treatment (and can be used to draw blood or put in the chemo). I’ve decided on the PORT since I’m not good with tubes hanging out that could get caught on things and shouldn’t get wet :). It’s a couple of weeks until I get the PORT put in (quick surgery, just local freezing). Then a few days for it to heal, and then chemo starts.
I’ll keep you posted. Still waiting for all of our fresh new snow to melt!
Take care,
Beth
My arm is much better. I don’t have full use back but it’s getting closer, and the pain is a lot less.
Here’s the details on the chemo (which will be at the brand new Buhler Cancer Centre at the Vic):
6 treatments, one every 21 days. It takes 2-3 hours for each treatment (administered through an IV). A mixture of 3 drugs for the first 3 treatments, and a 4th drug by itself for the last 3 treatments. Blood work is always done a day or two before each treatment to ensure the white blood cells (fight infection) and platelet counts (help your blood clot) are back up to normal, otherwise they delay. For those already familiar with cancer treatments – it’s the FEC-D regimen (Fluorouracil, Epirubicin, Cyclophosphamide, Docetaxel), with all of the bad side effects included for free (although they do add in an anti-nausea drug).
So when does it start? More to learn. First is the MUGA scan – a test of your heart muscle to measure the strength of it pumping the blood. Both to make sure you are strong enough to start the treatment, and as a baseline to ensure its not affected as you go through treatment. The years of running should have my heart pretty strong to start out here! Next is the decision of how to get the chemo – our little veins aren’t strong enough to handle the chemicals, so the choice is a PICC in your bicep (with a short tube hanging out) or a PORT surgically implanted just below your collar bone. Both have a tube feeding through your vein into an area close to your heart. Both stay in place for the length of your treatment (and can be used to draw blood or put in the chemo). I’ve decided on the PORT since I’m not good with tubes hanging out that could get caught on things and shouldn’t get wet :). It’s a couple of weeks until I get the PORT put in (quick surgery, just local freezing). Then a few days for it to heal, and then chemo starts.
I’ll keep you posted. Still waiting for all of our fresh new snow to melt!
Take care,
Beth
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