Tuesday, July 31, 2007
Hah!
I just found my note about my appointment today!!! Where was it you ask? How about basically right in front of me, under the stapler on my desk. No its not on a tiny piece of paper but the top sheet of a pad of paper about 3" x 8" I looked all over yesterday afternoon and then again this morning. I could have sworn I checked my desk completely yesterday. Hmmm... Well I could clean my desk. (There is a reason no one sees my office!) ..... space shot caused by stress! That's my story and I am sticking too it!
Stress makes me a space shot
Okay, it makes me a space shot more than usual. I have an appointment this afternoon. I know I wrote down time, place and person to ask for but I cant find my note. I do know when to be there, think I can figure out where I am going but can't remember who to ask for. Last week, I went to Walgreens, came home, took my purchases out of the bag to put away. Put them down, and couldn't find them for three days. I am trying to be organized but it is not working.
Anyhow, I looked up the chemo drugs I will get. The first chemo combination is Adriamycin and Cytoxan. Adriamycin is from a family of anthracyclines which are anti-tumor antibiotics that interfere with enzymes involved in DNA replication but it can cause weakening of the heart. Cytoxan is an alkylating agent that damages the DNA of cancer cells to prevent them from dividing and multiplying and it causes less nausea than others and less hair loss. The second set of chemo is Taxol which is a mitotic inhibitor which disrupts mitosis (I think I remember that from HS biology class) and can cause peripheral nerve damage - tingling/damage in hands and feet. Not fun. But that's tomorrow's adventure.
Anyhow, I looked up the chemo drugs I will get. The first chemo combination is Adriamycin and Cytoxan. Adriamycin is from a family of anthracyclines which are anti-tumor antibiotics that interfere with enzymes involved in DNA replication but it can cause weakening of the heart. Cytoxan is an alkylating agent that damages the DNA of cancer cells to prevent them from dividing and multiplying and it causes less nausea than others and less hair loss. The second set of chemo is Taxol which is a mitotic inhibitor which disrupts mitosis (I think I remember that from HS biology class) and can cause peripheral nerve damage - tingling/damage in hands and feet. Not fun. But that's tomorrow's adventure.
Monday, July 30, 2007
Whininess
I think my last post was the epitome of whininess. I think there are times when one can be whiny and get away with it. Maybe this is one. I think it is the fear of the unknown that gets to me. How will I react to chemo, I don't know? Will it do its thing, meaning increase the chances of cancer not recurring? You really don't know. If you undergo chemo, basically you are improving your survival rate but making your self very sick in the short term. You are trying to increase the odds that it wont come back. They surgically remove what they can first. Then with chemo they try to get it out of your system. Finally with radiation they zap the original area to get rid of any remaining cells.
So by having surgery, making yourself sick, and then zapping with radiation, you are supposed to be healthier than you were before. In some sort of weird way, it does make sense. Not that it sounds like any fun.
So at 2AM, I did contemplate writing in my blog instead of staring at the ceiling. I will save that for another night.
So by having surgery, making yourself sick, and then zapping with radiation, you are supposed to be healthier than you were before. In some sort of weird way, it does make sense. Not that it sounds like any fun.
So at 2AM, I did contemplate writing in my blog instead of staring at the ceiling. I will save that for another night.
Thursday, July 26, 2007
The waiting game
The worst, worst, worst, worst part of cancer treatment is the waiting. First its the 'oh, this is a lump/lesion/something yucky*', wait until we can tell you what it is; then its the wait for surgery, wait for path report, wait for test, wait for test results, repeat last two steps several times, wait for next surgery, wait for next path report, wait for stupid drain, wait for doctor apt, wait for test, and now we are at the 'wait for chemo to start' stage.
Chemo looks like such a piece of cake - NOT! I should preface this by saying that some people sail through chemo with no side effects but most people experience them. I know one woman in my BC support group who said her only side effect was she lost her hair. I am not sure I would use the world ONLY for that. I have four rounds with one drug combination and then four rounds with another. These are two weeks apart so they start August 1 and should end by Thanksgiving. Chemo works by going after fast growing cells, which cancer cells are. However, other fast growing cells in your body are: hair, stomach lining, white blood cells, red blood cells, finger nails, skin, and a few others. As a result, the side effects to look forward to are:
Hair loss - two weeks from first chemo it usually goes in a matter of hours on or about day 14. There is hope I will only have thinning with the first rounds but the second drug combination hair loss is a given.
Nausea - is it possible to have nausea for four months? They can give you a shot for it or possibly a pill but another drug to cover the side effects of the first drug.
Low white blood count - susceptible to infection, stay away from crowds, avoid places like the gym where germs breed. This is why I had to get my teeth cleaned this week. They can give you a shot for this.
Low red blood count - anemia and fatigue. Too tired to do anything. They can also give you a shot for this.
Constipation or diarrhea - well I guess you can't have both. :-p
Mouth sores/thrush - so you don't want to eat. I have a special mouth rinse for this and a prescription from my dentist.
Bad taste - you get a bad taste in your mouth and nothing tastes good. They actually say stay away from your favorite foods because if you eat them with a bad taste in your mouth you may never like them again. I think I may take up eating tofu - lean protein and I cant stand the taste. Also, Ensure shakes are recommended. Yick! I dont plan on cooking for the next four months.
Weight gain - apparently something like 50% of women on chemo gain weight even though food tastes like crap, nausea, and constipation or diarrhea. Go figure. Steroidal water retention.
It used to be that they gave chemo in doses every three weeks. Apparently, the first week you felt like crap, the second week a little better, and then the third week almost human. Well, now they give it as Dose Dense so you get chemo every two weeks so you feel like crap and possibly a little better for four months.
Then after chemo comes radiation - can you say fryolator? - and hormone therapy.
No, I am not stressed. I like lying in bed and staring at the ceiling from 2AM on.
(*Yucky is a highly technical term referring to many different types of medical conditions and procedures.)
Chemo looks like such a piece of cake - NOT! I should preface this by saying that some people sail through chemo with no side effects but most people experience them. I know one woman in my BC support group who said her only side effect was she lost her hair. I am not sure I would use the world ONLY for that. I have four rounds with one drug combination and then four rounds with another. These are two weeks apart so they start August 1 and should end by Thanksgiving. Chemo works by going after fast growing cells, which cancer cells are. However, other fast growing cells in your body are: hair, stomach lining, white blood cells, red blood cells, finger nails, skin, and a few others. As a result, the side effects to look forward to are:
Hair loss - two weeks from first chemo it usually goes in a matter of hours on or about day 14. There is hope I will only have thinning with the first rounds but the second drug combination hair loss is a given.
Nausea - is it possible to have nausea for four months? They can give you a shot for it or possibly a pill but another drug to cover the side effects of the first drug.
Low white blood count - susceptible to infection, stay away from crowds, avoid places like the gym where germs breed. This is why I had to get my teeth cleaned this week. They can give you a shot for this.
Low red blood count - anemia and fatigue. Too tired to do anything. They can also give you a shot for this.
Constipation or diarrhea - well I guess you can't have both. :-p
Mouth sores/thrush - so you don't want to eat. I have a special mouth rinse for this and a prescription from my dentist.
Bad taste - you get a bad taste in your mouth and nothing tastes good. They actually say stay away from your favorite foods because if you eat them with a bad taste in your mouth you may never like them again. I think I may take up eating tofu - lean protein and I cant stand the taste. Also, Ensure shakes are recommended. Yick! I dont plan on cooking for the next four months.
Weight gain - apparently something like 50% of women on chemo gain weight even though food tastes like crap, nausea, and constipation or diarrhea. Go figure. Steroidal water retention.
It used to be that they gave chemo in doses every three weeks. Apparently, the first week you felt like crap, the second week a little better, and then the third week almost human. Well, now they give it as Dose Dense so you get chemo every two weeks so you feel like crap and possibly a little better for four months.
Then after chemo comes radiation - can you say fryolator? - and hormone therapy.
No, I am not stressed. I like lying in bed and staring at the ceiling from 2AM on.
(*Yucky is a highly technical term referring to many different types of medical conditions and procedures.)
Wednesday, July 25, 2007
Darn
I don't think I can pass for 21 with my short hair... Well, maybe its because my new cut is different than 1982. The stylist did point out that now that the back of my neck is exposed, I should make sure I wear sunscreen there for a while as my ponytail was protecting it!
Also, I did want to report that my shoulders are slightly less uneven than previously noted.
Also, I did want to report that my shoulders are slightly less uneven than previously noted.
Finished HP
Yes, I finished HP VII. No, I won't tell you how it ends. I will say it was very different then the others and it pulls together a lot of stuff that was mentioned in the earlier books so I now I want to reread the rest of them, again.
Off to get a hair cut today. I found a picture of me from 1982 with short hair which I am bringing to ask them to copy. So if you knew me in 1982, I will look the same. (The few gray hairs, laugh lines, and flab will be rendered invisible by my new hair cut and I will look 21 again.)
Off to get a hair cut today. I found a picture of me from 1982 with short hair which I am bringing to ask them to copy. So if you knew me in 1982, I will look the same. (The few gray hairs, laugh lines, and flab will be rendered invisible by my new hair cut and I will look 21 again.)
Tuesday, July 24, 2007
Disemination of misinformation
Boy, was I wrong about the MUGA scan. First of all, it took 2 hours from when I arrived. Most of the time was waiting around. After waiting half an hour, they took 3 cc's of blood, added an isotope which took another half hour or so, stuck it back in me. Then they took three pictures that took seven minutes each. I got there at 12 and left at 2.
I was wrong about: how long it took and the stress test part. I was right that I really couldn't read HP while taking the test but did when waiting.
Also, I have clean teeth and didn't need a filling!
I was wrong about: how long it took and the stress test part. I was right that I really couldn't read HP while taking the test but did when waiting.
Also, I have clean teeth and didn't need a filling!
Monday, July 23, 2007
yucky
The more I learn about and experience all these tests, I can't decide if I more resemble a chemistry experiment or a physics experiment.
Doesn't this sound like fun?
A MUGA scan is sounding more and more exciting the more I learn about it. First of all, they dont give you an injection. They draw some blood, mix it with a radioisotope and reinject it in you. Then, you are not given an x-ray but are under a gamma camera where you have to remain completely still and you get an ECG at the same time. This takes 30-60 minutes. Lastly, there are resting MUGA scans and stress MUGA scans. The stress ones are on a stationary bike or something. Hmmm.. If the test takes three hours and the resting part only takes 30-60 minutes, I suspect I get the stress part too.
And the best part is before I go to this I get my teeth cleaned and probably a filling! Yippee! Yahoo! NOT! Ice cream for dinner to recuperate? Maybe Fritos and onion dip....
Oh, even better, apparently, you get this test more than once as you go through chemo to monitor for heart damage. Something else to look forward to!
And the best part is before I go to this I get my teeth cleaned and probably a filling! Yippee! Yahoo! NOT! Ice cream for dinner to recuperate? Maybe Fritos and onion dip....
Oh, even better, apparently, you get this test more than once as you go through chemo to monitor for heart damage. Something else to look forward to!
Sunday, July 22, 2007
HP is here!
Finally, my HP book showed up at 3:30PM yesterday. We had to go out at 4 (to a very nice wedding for a good friend). I didn't get to read it really until this morning but have been running around so I am really not reading it today. Maybe tonight. (So far it is good, a bit gory but good).
Anyway, this will be a busy week. Tuesday I have a MUGA (multi-gated blood pool imaging) scan. This is a test of your heart and surrounding tissue since some chemotherapy drugs can be very hard on your heart - merely cause congestive heart failure, a minor thing, nothing to worry about. Anyway, I don't know much about it so far. I do know I have to be there half an hour before it starts and it takes three hours! Some of the information I have seen says that it has two parts - one of a special x-ray and another where they have you riding a stationary bike to see how your heart does while stressed. Hmmm... I bet I can't read HP during this test.
Anyway, this will be a busy week. Tuesday I have a MUGA (multi-gated blood pool imaging) scan. This is a test of your heart and surrounding tissue since some chemotherapy drugs can be very hard on your heart - merely cause congestive heart failure, a minor thing, nothing to worry about. Anyway, I don't know much about it so far. I do know I have to be there half an hour before it starts and it takes three hours! Some of the information I have seen says that it has two parts - one of a special x-ray and another where they have you riding a stationary bike to see how your heart does while stressed. Hmmm... I bet I can't read HP during this test.
Saturday, July 21, 2007
Where is it?
My HP book is not here yet and we are going out in 2 hours to a wedding!!! Tapping fingers impatiently.... Grrr.
I did my exercises this morning, am doing laundry, went for a walk. While I was on my walk I went by one house where there was a young couple sitting on their front steps opening up their new HP book. Then I walked by another house where someone was reading their HP book. I want to read mine! Okay, I am being a whiner.
I did my exercises this morning, am doing laundry, went for a walk. While I was on my walk I went by one house where there was a young couple sitting on their front steps opening up their new HP book. Then I walked by another house where someone was reading their HP book. I want to read mine! Okay, I am being a whiner.
Friday, July 20, 2007
The Tale of The Little Lymph Node
Here is the story of the little lymph node. He didn't like hanging out with all the other lymph nodes who were negative. They never wanted to have any fun. He wanted to be positive and be happy and cheerful. Then one day he was positive. He liked his little lesion, it was cute and he showed it off to all the other lymph nodes and smiled away. They all frowned and said 'That doesn't count, it has to be bigger if you want to be positive'. He said 'Its big enough so I am positive' and pulled out a ruler and measured it. But it was too small, he was still negative. He pouted away. Then he said to himself 'What if I measure it this way instead?' He measured again and found out it was big enough so he was positive. That made him very happy!
Essentially that is what happened to me. The first lymph node was positive microscopically. The oncologist said it is positive but by such a small amount (<0.2 mm), I can be called node negative. Then he had the pathologist review the report again and it is bigger than initially thought (0.5 mm) and I am definitely node positive. I think from a surgical point of view, any cancer is considered node positive and warrants further surgery but from an oncology point of view it has to be bigger than 0.2mm to be considered positive. You would think they would keep their stories straight.
What this all means is the oncologist called me yesterday and based on the revised diagnosis, I am not eligible for the clinical trial (even though I did my homework) and will receive a more aggressive set of chemo - 4 rounds of AC and 4 rounds of Taxol - at 2 week intervals. All this fun will start August 1. Before then I have to go to the dentist, get my hair cut, fitted for a wig, and have a MUGA scan on my heart as well as the all important pedicure. That will keep me busy!
Essentially that is what happened to me. The first lymph node was positive microscopically. The oncologist said it is positive but by such a small amount (<0.2 mm), I can be called node negative. Then he had the pathologist review the report again and it is bigger than initially thought (0.5 mm) and I am definitely node positive. I think from a surgical point of view, any cancer is considered node positive and warrants further surgery but from an oncology point of view it has to be bigger than 0.2mm to be considered positive. You would think they would keep their stories straight.
What this all means is the oncologist called me yesterday and based on the revised diagnosis, I am not eligible for the clinical trial (even though I did my homework) and will receive a more aggressive set of chemo - 4 rounds of AC and 4 rounds of Taxol - at 2 week intervals. All this fun will start August 1. Before then I have to go to the dentist, get my hair cut, fitted for a wig, and have a MUGA scan on my heart as well as the all important pedicure. That will keep me busy!
Thursday, July 19, 2007
Its hard to keep up!
I receive a lot of cards, emails, and phone calls. It is to the point that I don't get back to everyone. I'm sorry but I cant. I really don't have the time and energy. I know you mean well. I am the cad who doesn't reply. I do appreciate hearing from everyone but please realize that it still isn't easy to talk about and I really don't want to rehash it over and over again on the phone. Email is easier as is communicating here through my blog but even so I can't always respond to all the emails. So here is a big thank you to all of you and if I don't get back to you, can you please pretend I did? Just sign me the rude one. (Its really not you, its me. That is unless you want to think its you, in which case feel free. )
Wednesday, July 18, 2007
Uneven shoulders
Yesterday, in an effort to get back in shape after sitting around for 2 weeks, I went for a walk around 7pm. As I was walking east on the bike path with the sun behind me, I noticed my shoulders are now uneven. No, not Quasimodo uneven, but it looks like I have a shoulder pad on one side and not the other. Just a weird side effect. I would think I will even out again... My shoulder feels stiff so maybe it will loosen up - two surgeries in two and 1/2 weeks might make anything a little stiff and sore. I also made it through yesterday with no pain medication - even advil - but already today I have taken some. But I actually slept most of last night.
Today, I want to go for a longer walk and ignore my uneven shadow. Also, I will try to remember to do my exercises twice a day... (Oops, I forgot to do them all last night...)
Today, I want to go for a longer walk and ignore my uneven shadow. Also, I will try to remember to do my exercises twice a day... (Oops, I forgot to do them all last night...)
Tuesday, July 17, 2007
To clinical trial or not to clinical trial
So much for a nice easy appointment with the oncologist. (First of all was the idiot OMWAH in the parking garage who apparently by their license plate had made it to Lahey from Rhode Island but was having difficulty navigating the parking garage.) The the oncologist, instead of saying the nice easy 'I recommend this treatment', I get the "would you like to participate in a clinical trial?". We have papers to read, research to do, and then make a decision. "Oh but no rush, if we don't hear from you in a couple of days, we will call you. And can you start in two weeks?"
So, do I want to participate in the trial? I don't know. Its randomized so if I participate, either I get one drug combination or a second one every two weeks and I get treatment for either 8 weeks or 12 weeks. We have no say in the matter. Basically one drug has been around longer but can cause significant heart problems so they are testing a second drug combination to see if its better. The trial has been going on for five years and has been relatively successful and they are expanding the enrollment.
On the other hand, I can say no and just get another set of treatments. The thing about clinical trials is that that is how they find better ways to treat people. Maybe it would give me a better chance and maybe it would help others as well.
So how do they determine a clinical trial is successful? The primary goals are disease free survival and comparison of the survival rates of the four groups but the secondary goal is overall survival and other issues. So if cancer doesn't come back and no one dies its successful? I guess I can't argue with that one. If someone dies, its clearly not a success.
Well off to think, read, research and decide.
So, do I want to participate in the trial? I don't know. Its randomized so if I participate, either I get one drug combination or a second one every two weeks and I get treatment for either 8 weeks or 12 weeks. We have no say in the matter. Basically one drug has been around longer but can cause significant heart problems so they are testing a second drug combination to see if its better. The trial has been going on for five years and has been relatively successful and they are expanding the enrollment.
On the other hand, I can say no and just get another set of treatments. The thing about clinical trials is that that is how they find better ways to treat people. Maybe it would give me a better chance and maybe it would help others as well.
So how do they determine a clinical trial is successful? The primary goals are disease free survival and comparison of the survival rates of the four groups but the secondary goal is overall survival and other issues. So if cancer doesn't come back and no one dies its successful? I guess I can't argue with that one. If someone dies, its clearly not a success.
Well off to think, read, research and decide.
Monday, July 16, 2007
This isn't fair!
My incision and crevasse (what else would you call it?) where my drain was are ITCHING!!!!!!!!!! Grrrr..... I know it means they are healing but I can't itch them, I cant put anything on them! Grr, grr, grr.
Sunday, July 15, 2007
What to blog about
Sometimes I think I have nothing to say in my blog. Do I repeat myself? Am I boring all you readers? It could be like Seinfeld - about nothing. Hmmm...
Well lets see, yesterday was so exciting. I did my exercises to regain arm mobility twice (like a good girl), I slept until 830 (very late for me), a friend came over with banana muffins, helped me weed and then we went to Penzeys and out to lunch, she went and got more Advil for me when I needed it, I watched a movie - Jesse Stone based on a Robert Parker book, we had cheeseburgers for dinner, and I beat Walter at scrabble. Oh, and the cat threw up in the living room. (Possibly TMI - sorry!) Was that exciting? Not really.
See, having cancer isn't interesting! It can be really boring just like real life. Nothing new. No Dr apt until Tuesday. My drain and incision hurt less than the nerves reawakening on the back of my arm. Life goes on.
PS The cat is looking for another chipmunk still. This may be his version of Waiting for Godot.
Well lets see, yesterday was so exciting. I did my exercises to regain arm mobility twice (like a good girl), I slept until 830 (very late for me), a friend came over with banana muffins, helped me weed and then we went to Penzeys and out to lunch, she went and got more Advil for me when I needed it, I watched a movie - Jesse Stone based on a Robert Parker book, we had cheeseburgers for dinner, and I beat Walter at scrabble. Oh, and the cat threw up in the living room. (Possibly TMI - sorry!) Was that exciting? Not really.
See, having cancer isn't interesting! It can be really boring just like real life. Nothing new. No Dr apt until Tuesday. My drain and incision hurt less than the nerves reawakening on the back of my arm. Life goes on.
PS The cat is looking for another chipmunk still. This may be his version of Waiting for Godot.
Saturday, July 14, 2007
Staging
Now they can stage my cancer. (No, not like a play.) Staging is important because it gives guidance on the type of cancer you have and the best treatment. What I have is:
1.3cm Invasive Ductal Carcinoma
Stage IIA, grade 2/3
ER+/PR+, HER2-
Nodes 1+/20-
What that means is that its a relatively small tumor. Tumors under 1cm are usually too hard to detect in a mammogram. I have probably had it for years but even last year it was too small to be found.
Invasive Ductal Carcinoma means it started in the breast ducts and has spread outside of the ducts and is the most common type of breast cancer - I think 70% of all breast cancers are IDC.
Stage IIA is from a range of 0-IV with 0 meaning they just cut it out to IV being that it has metastized through your body and there is not much that can be done (you don't want to be stage IV). Roughly here are the stages: Stage I means a relatively small tumor that has not spread; Stage II is a relatively small tumor that has spread some to nodes or a relatively large tumor that has not spread; Stage III is any size tumor that has spread to the lymph nodes; and Stage IV means a cancer that has spread and is elsewhere in your body - usually liver, bones, and lungs first.
Grade is the grade of how aggressive the growth of the cancer (how fast it grows) on a scale of 1-3 so mine is moderately growing.
ER+ and PR+ are Estrogen and Progesterone Receptor positive and means that the cancer needs both estrogen and progesterone to grow and a successful therapy blocks both and impedes its growth. This is a good thing!
HER2 negative means I do not have too many of the HER2 gene or its receptors. This is also a good thing!
Finally, the fewer positive nodes the better. It was just beginning to spread. Breast cancer spreads through the lymph system first usually and the more positive nodes the more likely it has spread elsewhere in the body. No positive nodes is best but one tiny microscopic area in one node is basically the next best thing.
If you want to sound like you know what you are talking about you can say: "She has a 1.3cm IDC on the left breast that is stage IIA, grade 2/3 but ER and PR positive and HER2- negative with one positive sentinel node." Anyone who knows about cancer will be impressed that you are so well educated.
That is your medical lesson for today. I can't believe I wrote all this on my first cup of coffee (with the cat adding to my typing skills sitting in my lap.) If you really want more information on this go to www.breastcancer.org and it is explained in great detail and you can see if I know what I am talking about.
1.3cm Invasive Ductal Carcinoma
Stage IIA, grade 2/3
ER+/PR+, HER2-
Nodes 1+/20-
What that means is that its a relatively small tumor. Tumors under 1cm are usually too hard to detect in a mammogram. I have probably had it for years but even last year it was too small to be found.
Invasive Ductal Carcinoma means it started in the breast ducts and has spread outside of the ducts and is the most common type of breast cancer - I think 70% of all breast cancers are IDC.
Stage IIA is from a range of 0-IV with 0 meaning they just cut it out to IV being that it has metastized through your body and there is not much that can be done (you don't want to be stage IV). Roughly here are the stages: Stage I means a relatively small tumor that has not spread; Stage II is a relatively small tumor that has spread some to nodes or a relatively large tumor that has not spread; Stage III is any size tumor that has spread to the lymph nodes; and Stage IV means a cancer that has spread and is elsewhere in your body - usually liver, bones, and lungs first.
Grade is the grade of how aggressive the growth of the cancer (how fast it grows) on a scale of 1-3 so mine is moderately growing.
ER+ and PR+ are Estrogen and Progesterone Receptor positive and means that the cancer needs both estrogen and progesterone to grow and a successful therapy blocks both and impedes its growth. This is a good thing!
HER2 negative means I do not have too many of the HER2 gene or its receptors. This is also a good thing!
Finally, the fewer positive nodes the better. It was just beginning to spread. Breast cancer spreads through the lymph system first usually and the more positive nodes the more likely it has spread elsewhere in the body. No positive nodes is best but one tiny microscopic area in one node is basically the next best thing.
If you want to sound like you know what you are talking about you can say: "She has a 1.3cm IDC on the left breast that is stage IIA, grade 2/3 but ER and PR positive and HER2- negative with one positive sentinel node." Anyone who knows about cancer will be impressed that you are so well educated.
That is your medical lesson for today. I can't believe I wrote all this on my first cup of coffee (with the cat adding to my typing skills sitting in my lap.) If you really want more information on this go to www.breastcancer.org and it is explained in great detail and you can see if I know what I am talking about.
Friday, July 13, 2007
What was I thinking?
I vacuumed!! When Walter was home! At the hospital they said NO housework for a year and I blew it already! I should have waited until he went out for a run. Damn!
When they say its not going to hurt
They are lying! I asked the nurse if they use a local and if it hurts when they remove a drain. She said they don't use a local and it doesn't hurt. When the doctor pulled the drain out from my side, it was incredibly painful. He said I was someone who had an unusually strong reaction to the tube and my skin was all red and irritated around it and that it was much more painful than for the majority of other people. I didn't see a thing but apparently there were several inches of tube drain in me as well as some other yucky stuff that came out. (Okay, maybe you didn't want to know all that.)
Anyhow, there were no more positive nodes which is a very good thing. He took out a total of 21 nodes, including the first one which was positive, so one positive, 20 negative is a good ratio.
Next stop, medical oncologist to discuss chemo plans... Apparently they look at three factors in determining if you should have chemo: size of tumor - over 2cm and yes definitely, under 1 cm and usually not so I am in the gray area; next is lymph node involvement - I have minimal involvement; and last criteria is patient age and health - the young healthy ones (like me) apparently are the best candidates to ensure a nice long life. It seems most likely that is what will happen.
Now I get to start a whole set of range of motion exercises to regain mobility in my left arm - that will keep me busy until the next apt.
PS It is already less painful with the drain gone but I need a nap.
Anyhow, there were no more positive nodes which is a very good thing. He took out a total of 21 nodes, including the first one which was positive, so one positive, 20 negative is a good ratio.
Next stop, medical oncologist to discuss chemo plans... Apparently they look at three factors in determining if you should have chemo: size of tumor - over 2cm and yes definitely, under 1 cm and usually not so I am in the gray area; next is lymph node involvement - I have minimal involvement; and last criteria is patient age and health - the young healthy ones (like me) apparently are the best candidates to ensure a nice long life. It seems most likely that is what will happen.
Now I get to start a whole set of range of motion exercises to regain mobility in my left arm - that will keep me busy until the next apt.
PS It is already less painful with the drain gone but I need a nap.
3 hours and counting
Until the stupid drain comes out!!!!!!!!!! No 2 hours and 57 minutes... Not that I am impatient or anything.
Thursday, July 12, 2007
Good drain news
Yes it is possible to have good drain news when the words are - come in tomorrow and we can take it out. The surgeon's office called today to see how I was doing and asked how the much fluid the drain was draining. They said if it stays at the same low level, call in the morning and ask to have them fit me in to take it out tomorrow! Happy, happy news! I can't wait. You can be damn sure that the fluid level isn't going to rise between now and then.
PS I must add that if we are off to Lahey again, there will probably (no, most definitely) be more OMWAH sightings. I will post a report.
PS I must add that if we are off to Lahey again, there will probably (no, most definitely) be more OMWAH sightings. I will post a report.
Bicycling problems!
Now it turns out that in addition to all the aforementioned issues with lymphedema, I have to either get special handle bars for my bike or a new bike. Apparently there is some issue with body position over your bike or something. Who would have thought that BC could interfere with biking???? (Can I just say I really HATE this drain?)
Wednesday, July 11, 2007
The Drain
The drain is yucky! I hate it, its uncomfortable, and its just icky! It is a piece of soft plastic tubing that is about 18" long that is apparently about 1 1/2" under my skin. At the bottom of it is an oval collection valve that collects all the fluid that drains. It has to be emptied twice a day (yick!)
The reason for having it is that lymph nodes were removed and they are part of your body's drainage system. As they are no longer there, the fluid that they would drain as a result of the surgery has to be drained out some how. Once the initial healing happens, I just have to be careful with that arm for the rest of my life - no IV's, injections, blood pressure, etc. Also need to avoid carrying heavy objects on that arm, be careful with cuts and injuries, and exposure to heat. This is all to avoid a condition called lymphedema. This has no cure and you can only work to avoid it. Lymphedema causes swelling in the arm which can be permanent. Doesn't that sound like fun???
Only 5 more days of this stupid drain. Grr, grr, grr.
The reason for having it is that lymph nodes were removed and they are part of your body's drainage system. As they are no longer there, the fluid that they would drain as a result of the surgery has to be drained out some how. Once the initial healing happens, I just have to be careful with that arm for the rest of my life - no IV's, injections, blood pressure, etc. Also need to avoid carrying heavy objects on that arm, be careful with cuts and injuries, and exposure to heat. This is all to avoid a condition called lymphedema. This has no cure and you can only work to avoid it. Lymphedema causes swelling in the arm which can be permanent. Doesn't that sound like fun???
Only 5 more days of this stupid drain. Grr, grr, grr.
Tuesday, July 10, 2007
Sleeping in one position is awful
I can't sleep on my stomach or either side. I can only sleep on my back. I wake up in the morning all stiff and sore.... Grrr....
Monday, July 9, 2007
The worst part is the waiting
I can't do anything meaningful until I get this drain removed. By meaningful, I mean I can't go for a walk or get any real exercise. I tried weeding the garden but that is difficult. Sometimes when I bend down I can feel the stupid drain stabbing into me. My weeds are going wild! I got caught up on our Netflix and have to wait for more to arrive. I never did like daytime TV. Now I get to stress about what is next! One more week until the results and then maybe, finally, possibly, I will get a plan of action on what happens.
When you get a diagnosis of cancer, you really end up putting your life on hold until you get a plan of treatment and through the treatment. I can't look for a job or plan a vacation because I don't know how long this will take. I am not used to sitting around doing nothing. This is where it gets so stressful. If I can do anything, I can imagine all the what ifs; 'what if it is in all the nodes', 'what if it has spread'. Every little twinge in your body is a new place cancer has spread. Ha!
Well today I was on one of the breast cancer message boards - and believe me there a lots of them! The one I go to most has women from all over the world on it. A lot of the participants have blogs or care pages. One of them had a picture of a 'Breast Cancer Sucks' ball cap in her web page. Frankly, while I like pink, the little pink ribbon on everything doesn't always do it for me. I saw this hat and said that is more like it so I googled it (you can google everything these days) and found this website full of much more 'vocal' breast cancer items. http://tinyurl.com/28p9vf. I think I like the 'Fight like a girl' and the 'cancer picked the wrong diva' better than the pink ribbon.
Anyhow, back to google. Google is getting scary. They use the key words people search on to track what people look for and where and using what words. They are becoming a big brother in someways! Some people I know now have stopped using Google because they are too big!
When you get a diagnosis of cancer, you really end up putting your life on hold until you get a plan of treatment and through the treatment. I can't look for a job or plan a vacation because I don't know how long this will take. I am not used to sitting around doing nothing. This is where it gets so stressful. If I can do anything, I can imagine all the what ifs; 'what if it is in all the nodes', 'what if it has spread'. Every little twinge in your body is a new place cancer has spread. Ha!
Well today I was on one of the breast cancer message boards - and believe me there a lots of them! The one I go to most has women from all over the world on it. A lot of the participants have blogs or care pages. One of them had a picture of a 'Breast Cancer Sucks' ball cap in her web page. Frankly, while I like pink, the little pink ribbon on everything doesn't always do it for me. I saw this hat and said that is more like it so I googled it (you can google everything these days) and found this website full of much more 'vocal' breast cancer items. http://tinyurl.com/28p9vf. I think I like the 'Fight like a girl' and the 'cancer picked the wrong diva' better than the pink ribbon.
Anyhow, back to google. Google is getting scary. They use the key words people search on to track what people look for and where and using what words. They are becoming a big brother in someways! Some people I know now have stopped using Google because they are too big!
Sunday, July 8, 2007
Things you can't do with one arm
I have limited mobility in my left arm since surgery and it will take some time to get it back. I have found I can't do the following:
wash or brush my hair
make a ponytail
get dressed easily
pick up big things
do laundry (darn!)
Very aggravating!
(Walter is learning to make ponytails.)
wash or brush my hair
make a ponytail
get dressed easily
pick up big things
do laundry (darn!)
Very aggravating!
(Walter is learning to make ponytails.)
A shower!
Showering is wonderful. Showering with one hand is difficult. Also, I have giant bottles of shampoo and conditioner that I can't handle with one hand! Maybe we buy some little bottles today.
I need to get some exercise and move around a bit more. Therefore our big excursion today is the grocery store - its flat, air conditioned, and we can get the few things we need. Its too hot to walk outside and I am not sure I can make it up the big hill!
No more chipmunks but Shere-Khan is still looking for them!
I need to get some exercise and move around a bit more. Therefore our big excursion today is the grocery store - its flat, air conditioned, and we can get the few things we need. Its too hot to walk outside and I am not sure I can make it up the big hill!
No more chipmunks but Shere-Khan is still looking for them!
Another night's sleep
Yes I got another night's sleep but this is painful. Imagine sticking a metal spike into your arm pit! It hurts! I am learning to stay ahead of the pain curve. Darvocet, yes!
However I am moving around more and may actually make it outside the house today. I have been inside since Friday.
However I am moving around more and may actually make it outside the house today. I have been inside since Friday.
Saturday, July 7, 2007
I Slept!
Yippee, I slept last night from 10-1230 (time for more darvocet), then til 430, and then again till 630. So nearly 8 1/2 hours of sleep - finally. I feel better but still have pain.
Dear Shere Khan: You may NOT walk on my left shoulder anytime soon! Thank you.
Dear Shere Khan: You may NOT walk on my left shoulder anytime soon! Thank you.
Friday, July 6, 2007
Surgery went fine
I am home. The surgery went fine. Darvocet is a wonderful thing. I am tired, sore, achy, and otherwise okay. Nothing like a good night's sleep at the hospital. I slept from 830-930 and the pain meds wore off so I woke up. Vitals check around midnight and then I slept from 1230-3 when the night nurse came in to check on me. Then at 430 they came to check my vitals again. Then at 6 am about 10 residents showed up to check on me. I need a nap.
We will have results of the pathology reports on the 16th so no news until then. I also have this stupid drain which has to be emptied twice a day, by a visiting nurse at first, for the entire time! No driving, etc while I have it in as well. Just lots of naps with the cat.
We will have results of the pathology reports on the 16th so no news until then. I also have this stupid drain which has to be emptied twice a day, by a visiting nurse at first, for the entire time! No driving, etc while I have it in as well. Just lots of naps with the cat.
Thursday, July 5, 2007
Trying not to stress
I am trying not to stress out and think about being hungry and the CAT is not helping. (Today he is clearly Walter's cat.) We were sitting there calmly reading the paper. The cat was downstairs inside the front doorway where he likes to look out. We heard a sound like the screen door opening and guess who came running up stairs with a LIVE chipmunk in his mouth??? Walter dispatched him safely outside after a minor skirmish on the stairs. How did the cat catch the chipmunk if he was inside? No chipmunk would come inside the entry, although he could fit through the space under the door, with the cat sitting there. I really doubt we have chipmunks living inside! Maybe he ran by outside and a little paw slipped out and grabbed him. The door was shut but not latched. Hmmmm..... One of life's little mysteries.
Just a little diversion. I did find the note telling me what part of Lahey I need to be at- now that's helpful! Off to Lahey now that I am just healed from the last surgery!
Just a little diversion. I did find the note telling me what part of Lahey I need to be at- now that's helpful! Off to Lahey now that I am just healed from the last surgery!
Wednesday, July 4, 2007
No deep thoughts today
I have nothing profound to add today. Its the 4th of July and we are having a few people over this afternoon - so I can't sit around stress out. I did go for a walk this morning to admire the neighbors gardens. I noticed one of them as a Slip 'n' Slide nicely positioned on their lawn on a slight down hill slant. Would it be really rude to go over after dark and turn on their hose to use their Slip 'n' Slide? Probably. Hmmm... Need a new idea for fun.
Tuesday, July 3, 2007
Details
I called and found out. I have to be at Lahey at 11 on Thursday for 1230pm surgery. I will be home some time mid day Friday. Gee something to look forward to!
Steri strips - GONE!
As soon as I woke up this morning, I ripped those babies off! The doctor said to leave them on until Tuesday which I did, but not a second longer.
Monday, July 2, 2007
Surgery info
On Tuesday I will find out what time my surgery will be on Thursday. The operation itself is relatively short, an hour or so, and they will take out all the lymph nodes under my left arm. Then they put in a drain (think 18" of rubber tube with a valve on the end) with a big fat bandage. I will spend the night in Lahey for observation (to monitor pain levels and the lovely drain.) The drain has to be emptied twice a day for 10 days (yucky!). Then I get to start mobility exercises and get back in shape. While the drain is in I get limited exercise and no driving. Also, no housework, no laundry, no carrying anything 10+ lbs (cat you have to walk more), swimming, etc.
(Weird fact: every one has a different number of lymph nodes in their body, usually somewhere between 300 and 500. In one area, such as underarm, it is considered normal to have somewhere between 15 and 25.)
(Weird fact: every one has a different number of lymph nodes in their body, usually somewhere between 300 and 500. In one area, such as underarm, it is considered normal to have somewhere between 15 and 25.)
Sunday, July 1, 2007
Since about 5 people have asked
The significance of having positive lymph nodes means that it has started to spread. The first place it spreads usually is to the sentinel lymph nodes (the ones that drain the breast) and then moves to other places. Having one positive node means they need to check them all. The more positive lymph nodes you have the worse it is. Then they have to start testing and seeing where else it might have spread - usually lungs, bones, and liver first.
However, the amount of cancer in the one node is very small. Also, I have already had a bone scan (test for bone cancer) and it was clean. I think my chest x-ray was also clean as no one has told me other wise. If you want to learn more about breast cancer and how it spreads and is treated visit www.breastcancer.org.
Enough morbid stuff so early in the day. Yesterday I beat Walter at mini-golf!!!!! Hah!
However, the amount of cancer in the one node is very small. Also, I have already had a bone scan (test for bone cancer) and it was clean. I think my chest x-ray was also clean as no one has told me other wise. If you want to learn more about breast cancer and how it spreads and is treated visit www.breastcancer.org.
Enough morbid stuff so early in the day. Yesterday I beat Walter at mini-golf!!!!! Hah!
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I Started a New Blog
I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...
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I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...
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Yesterday I had a (not so fun) back procedure. As my arm has been acting up, I wore my lymphedema sleeve on my left arm. I am going to the l...
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This is the misunderstood side of my life - how I live with limitations. The other day, I visited my mother who also has RA. We went for a w...