Throughout most of this blog I've tried to write lightheartedly with humor and still get information out. Sometimes this is easy and sometimes not. A couple days after my treatments, I try not to write at all because those are my "rough days". I've decided to make an exception with this last AC treatment. It's only fair that if I'm going to write about my experience, I need to write about all of it, not just the parts that I can crack wise about.
So yes, this will probably be a downer to read, but it's important all the same.
I usually feel ok on Monday, after treatment, and for most of Tuesday. I'm trying a new anti-nausea patch*** because my doctor was concerned with how long I stayed sick after my last treatment. It takes a couple of days to kick in so I put it on Tuesday morning. My Aunt Kathy is here to help me with the kiddos and the house stuff. My pop had a trip this time around. She leaves Tuesday afternoon because I would rather spend my rough days alone than have anyone there to watch me be sick. By Tuesday evening, I begin to feel like I had a meal that was a little too spicy. That's when I know to stay on the ball with my medicine.
When I wake up Wednesday morning, I take it slow. My mouth tastes like ashes, even though I haven't had a cigarette in over 15 years. My bones hurt deep down from the Neulasta shot I had the day before. The glands in my neck are rock hard and ache. It's hard to swallow. My stomach is sour.
I have to get up and get moving. My friends are coming to take the kids for the day so that I can recover. I still have to get them up, dressed & fed before they get here though. My kiddos know the drill by now. They don't fuss or have a fit anymore. They don't argue with what I've picked for their breakfast or complain about how slow I move to get it to them. I let them pick their own clothes. We make sure to indulge with hugs, kisses, and very gentle cuddles before they leave. I miss my babies, but I don't want them to see me in pain like this. I want them to remember having fun during their summer. I thank the Goddess every day that I have friends kind enough to take them on these days.
I take my first medicine cocktail of the day: Claritin. Vicodin for the pain. Tagamet, Zoloft, & Tigan for nausea. Ativan for my nerves. Valtrex & L-lysine, because chemo can cause extreme cold sore flare-ups. A stool softener, because so many of these pills cause constipation. I have to take some mixture of these pills four times a day, everyday, but on Wednesday & Thursday is when I have to lay it on thick.
I take my morning pills with milk, usually whatever is left from my cereal. My beverage choices have narrowed considerably. My stomach is extremely sensitive. Coffee has been off the menu for more than a month now. I miss it, but I know I'll get to have it again when this is all over. Juice is pretty much a no go because of acid content. Drinking pop of any kind burns. I pretty much just drink milk & water now though. I'll add some chocolate or strawberry flavor to my milk or a little smidge of koolaid to the water to change the flavor once in a while. I know I'll probably get another kidney stone down the road from the amount of milk I've been drinking, but for now it's a great buffer. I can eat more things because I'm drinking it. Sometimes I can manage iced tea too. The cold feels good. I make sure to drink a lot during the day to keep hydrated.
Now that the kids are off, my tummy has something in it, pills are taken.... I can try to relax. The vicodin helps twofold. It not only dulls my bone pain. It helps me sleep and the more of the day I can sleep away, the faster this rough patch seems to go by.
I wake up to take my lunchtime pills and get some food on my stomach, even if I'm not hungry. Some of the pills I take can cause ulcers if I don't eat. I make sure that I eat something soft, in case I have to lose it quickly. I have to consider that for all of my meals right now. I spend a little bit of time online, usually on Facebook, saying hello, thanking people for their kind thoughts (I really do take all of them to heart!), seeing what the world is up to before I get sleepy again.
About the time I wake up, Aaron is getting home with the kids. He makes us some dinner, omelettes for him & the kids this time, plain scrambled eggs & toast for me. This is the hard part for me, emotionally. I know that Aaron is so tired after working all day and I feel horrible that I can't help. The logical part of me knows that he doesn't resent me for this, that neither of us have any control over this part of my treatment. I know that it's not forever. That doesn't stop me from feeling useless though.
We spend a couple of hours watching tv together, cuddling as a family. I give the kids goodnight hugs & kisses in the living room because I can't go upstairs. I get dizzy & nauseous. Aaron makes sure they get to bed then he falls asleep in his chair. He's had a long day. I stay up long enough to get my last round of meds in, then get us both to bed.
I end up waking up every other hour to use the bathroom because of all the fluids I drank over the course of the day. This is good because it's flushing the poison out, but I'm so tired!
We do it all over again the next morning.
I'm glad that the kids are excited to go see their friends. It's easier than arguing with them, Connor especially. He's still having a hard time with this sometimes and doesn't like to leave me. He's making it easy on me today though. :-)
I stick with my routine.... Eat, drink, take meds, sleep, do it again times three. I actually ate a whole potato with sour cream & bacon bits for dinner tonight! It's a little early to say for sure, but I think the patch is doing it's thing! Hopefully, it'll be all uphill from here. But now we have to prep for the next set of chemo meds. The doc said the Taxol should be easier than the AC treatments, but everyone is different.
My fingers are crossed and I'm hopeful.
(Many, many thanks to my Aunt Kathy, the Cox Family, & the Markel Family for their help this week! And also to all of the other families who have helped and are helping us through this! You have all been such a blessing to our family. There just are not enough words or ways to repay in kind.... With much love in my heart -Nik)
*** The Sancuso patch is what was prescribed. You can read up on it here: http://www.drugs.com/sancuso.html
Friday, August 12, 2011
Saturday, July 30, 2011
Love & Coping
Ok, folks... The photoblog is still on the agenda. I'm just not well enough yet to sit in front of the computer to manipulate the pics yet. This third round has been a pain in the heiney to shake. I even got sick for the first time last night and I *hate* getting sick with a passion that knows no bounds. I'm hoping the rest of today I'll be on the upswing. *fingers crossed*
So today, I thought I'd write instead about something that is important and affects both the Cancer Survivor and everyone that surrounds them.
We are all born with a sense of self-preservation. For the Survivor, that means getting the cancer out of us, getting it treated, and hopefully getting on with our lives without it ever coming back. For those around us, it's a bit different. Self-preservation isn't just about survival. To break the word down, it's about preserving one's "self".
I warned Aaron when we first started down this road that our friends and family will react in a few different ways to our news. Some will feel a need to jump in with both feet and do what they can to help us out. (Thank the Goddess for these folks!!!!) Some won't be comfortable and will pretend like nothing big is going on in our lives, but will still interact with us on a limited basis. Some others will extract themselves from our lives altogether until the crisis is over.
Some of you may read this and think, "Dang! That's mean!" or "Some people are just so selfish!" But I totally get it. Each reaction is meant to protect that person from harming their own psyche. I understand all of these because I have been guilty of each of them over the course of my life.
We do the best with what we're given at any particular point in our lives. And with life experience and depending on the result or lack of that experience, we are given different coping mechanisms. If someone has never dealt with cancer before, has heard all the bad stories, could you really blame a person for shutting down out of fear? I can't.
So, I guess the whole point of this is to my friends and family... Go with your comfort level. I know that I am loved, even from a distance, and that I love you guys too. We'll still be good when this is all over. *hugs*
So today, I thought I'd write instead about something that is important and affects both the Cancer Survivor and everyone that surrounds them.
We are all born with a sense of self-preservation. For the Survivor, that means getting the cancer out of us, getting it treated, and hopefully getting on with our lives without it ever coming back. For those around us, it's a bit different. Self-preservation isn't just about survival. To break the word down, it's about preserving one's "self".
I warned Aaron when we first started down this road that our friends and family will react in a few different ways to our news. Some will feel a need to jump in with both feet and do what they can to help us out. (Thank the Goddess for these folks!!!!) Some won't be comfortable and will pretend like nothing big is going on in our lives, but will still interact with us on a limited basis. Some others will extract themselves from our lives altogether until the crisis is over.
Some of you may read this and think, "Dang! That's mean!" or "Some people are just so selfish!" But I totally get it. Each reaction is meant to protect that person from harming their own psyche. I understand all of these because I have been guilty of each of them over the course of my life.
We do the best with what we're given at any particular point in our lives. And with life experience and depending on the result or lack of that experience, we are given different coping mechanisms. If someone has never dealt with cancer before, has heard all the bad stories, could you really blame a person for shutting down out of fear? I can't.
So, I guess the whole point of this is to my friends and family... Go with your comfort level. I know that I am loved, even from a distance, and that I love you guys too. We'll still be good when this is all over. *hugs*
Tuesday, July 26, 2011
Knowledge will set you free, or at least make you feel better!
Hey Gang! I'm sitting here getting my third round of AC. Only one more of this combo to go!!!! Yippee!!!!!!
The Red Nair, as my friend Emilie calls it, finally kicked in after my last treatment and my hair started falling out. We had some fun with it. I took some silly pictures of the funny 'dos I had after pulling out the loose stuff.. I'd put my baseball cap in my lap and the kids would see how fast they could fill it with hair. We're discussing what I'm going to be for Samhain/Halloween: the Borg Queen from Star Trek, the blue chick from Farscape, Dr. Evil (or Pop can be Dr. Evil and I could be Mini Me). If I lose a lot of weight by that time, I could be a Bic roller pen! Hehehe... Connor keeps asking me every other day if it's time to shave my head yet. I told him that he & Shawni can help cut it off when the time comes and he's so excited about that.
(***THIS PART IS TMI. PLEASE DON'T READ BETWEEN THE SQUIGGLES IF YOUR SENSIBILITIES ARE EASILY OFFENDED***)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
It's easier when we keep it fun, but there were some rough times too. Things were particularly rough on Sunday the 17th. Aaron had taken the kids with him to a friends house for a Poker game. No, the kids went to play with the other kids there, not to be part of the stakes! :-P
Anyway, while they were gone. I went to use the bathroom. You can imagine my surprise when I found the entire area "downstairs" was swollen and felt like it was on fire! The area up front burned like hell, felt shredded, and had blisters, while the backside was extremely swollen like I had a bunch of hemorrhoids and was bleeding pretty profusely.
I started to have a panic attack but I tried to keep some sense about me. I didn't call Aaron because he wouldn't know what to do and he was keeping the kids occupied so they wouldn't have to see me panicked like this. I did text some local girlfriends that I know, anyone who had medical knowledge, for help. Jen P just happen to be right down the street from me and she zipped right over. She helped me calm down and we looked some stuff up because she hadn't heard of this happening either. Evidently, this is caused in some cases because of all the chemo toxins leaving the body and that area's tissue being super sensitive. I hadn't seen this mentioned in any of the books I'd read. I would think that this is kind of important information, wouldn't you?
A lot of sites we looked up recommend using a sitz bath with epsom salt, but I don't have one of those. Instead, I managed to find my cleansing bottles from when I had Shawni. (Sometimes it's good to have a touch of pack rat!) I rinsed with water as cold as I could get it out of the tap and it helped with the swelling. The next appointment with Dr. Nagpal, I mentioned what had happened. He seemed kind of surprised and prescribed a cream to help (name of cream to come). It seemed to help ease the pain of the blisters and stopped the bleeding.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On the 21st, I went to Dr. Gold's office for my checkup. I got to see Jessica again and it was a lot more laid back with her this time. I think the last time she was giving me so much info and I was just so stressed with everything that I was rubbed the wrong way, ya know? She is a bundle of energy though! Wow! So, we were talking after my exam and she asked, since I was losing my hair, when I was going to be getting my wig. I told her that I was making hair pieces because the HealthPlus policy we have does not cover "cranial prosthetics". She got so mad about that! She stood up and said, "That's bullshit!!! Wait right here...." and walked out of the room. She came back with a wig for me. She handed it to me, telling me that it was a display sample that the company never came back for. I asked how much and she said it's nothing and to just bring it back when I was done with it! I put it on and it's so cute. Not my usual style or color, but fashionable! I was ecstatic!
Also, a friend of ours, Edie B, made dinner for us last week: meatloaf with green beans and rice. YUM! She even gave Aaron an extra meatloaf for the freezer for my rough days. As I recently posted similarly on Facebook, everyday I have to reexamine just how lucky and blessed I am. I have family and friends that love me, that I love just as much. I have always been willing to bend over backwards to help my loved ones. The damaged part of me is just amazed that people would be willing to do the same for me.
I planned to post a photo blow-by-blow of my second chemo treatment, but I thought that the above info was more crucial to know. I'll still try to get the photo blog up when I'm feeling better, as well as add some pix to past posts that I'd been meaning to put up.
Love to all!
Nik
*** I wrote the squiggle part, not to be gross, but because I felt it was very important stuff to know. If you are a cancer patient, please don't assume that this is going to happen to you. I just want you to know and be prepared in case it DOES happen. Everyone seems to have different things happen to them on chemo. I heard a gentlemen talking today that he couldn't handle eating Ritz crackers, but he could handle Town House crackers just fine! Dealing with Cancer and chemo can just be weird sometimes.
The Red Nair, as my friend Emilie calls it, finally kicked in after my last treatment and my hair started falling out. We had some fun with it. I took some silly pictures of the funny 'dos I had after pulling out the loose stuff.. I'd put my baseball cap in my lap and the kids would see how fast they could fill it with hair. We're discussing what I'm going to be for Samhain/Halloween: the Borg Queen from Star Trek, the blue chick from Farscape, Dr. Evil (or Pop can be Dr. Evil and I could be Mini Me). If I lose a lot of weight by that time, I could be a Bic roller pen! Hehehe... Connor keeps asking me every other day if it's time to shave my head yet. I told him that he & Shawni can help cut it off when the time comes and he's so excited about that.
(***THIS PART IS TMI. PLEASE DON'T READ BETWEEN THE SQUIGGLES IF YOUR SENSIBILITIES ARE EASILY OFFENDED***)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
It's easier when we keep it fun, but there were some rough times too. Things were particularly rough on Sunday the 17th. Aaron had taken the kids with him to a friends house for a Poker game. No, the kids went to play with the other kids there, not to be part of the stakes! :-P
Anyway, while they were gone. I went to use the bathroom. You can imagine my surprise when I found the entire area "downstairs" was swollen and felt like it was on fire! The area up front burned like hell, felt shredded, and had blisters, while the backside was extremely swollen like I had a bunch of hemorrhoids and was bleeding pretty profusely.
I started to have a panic attack but I tried to keep some sense about me. I didn't call Aaron because he wouldn't know what to do and he was keeping the kids occupied so they wouldn't have to see me panicked like this. I did text some local girlfriends that I know, anyone who had medical knowledge, for help. Jen P just happen to be right down the street from me and she zipped right over. She helped me calm down and we looked some stuff up because she hadn't heard of this happening either. Evidently, this is caused in some cases because of all the chemo toxins leaving the body and that area's tissue being super sensitive. I hadn't seen this mentioned in any of the books I'd read. I would think that this is kind of important information, wouldn't you?
A lot of sites we looked up recommend using a sitz bath with epsom salt, but I don't have one of those. Instead, I managed to find my cleansing bottles from when I had Shawni. (Sometimes it's good to have a touch of pack rat!) I rinsed with water as cold as I could get it out of the tap and it helped with the swelling. The next appointment with Dr. Nagpal, I mentioned what had happened. He seemed kind of surprised and prescribed a cream to help (name of cream to come). It seemed to help ease the pain of the blisters and stopped the bleeding.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On the 21st, I went to Dr. Gold's office for my checkup. I got to see Jessica again and it was a lot more laid back with her this time. I think the last time she was giving me so much info and I was just so stressed with everything that I was rubbed the wrong way, ya know? She is a bundle of energy though! Wow! So, we were talking after my exam and she asked, since I was losing my hair, when I was going to be getting my wig. I told her that I was making hair pieces because the HealthPlus policy we have does not cover "cranial prosthetics". She got so mad about that! She stood up and said, "That's bullshit!!! Wait right here...." and walked out of the room. She came back with a wig for me. She handed it to me, telling me that it was a display sample that the company never came back for. I asked how much and she said it's nothing and to just bring it back when I was done with it! I put it on and it's so cute. Not my usual style or color, but fashionable! I was ecstatic!
Also, a friend of ours, Edie B, made dinner for us last week: meatloaf with green beans and rice. YUM! She even gave Aaron an extra meatloaf for the freezer for my rough days. As I recently posted similarly on Facebook, everyday I have to reexamine just how lucky and blessed I am. I have family and friends that love me, that I love just as much. I have always been willing to bend over backwards to help my loved ones. The damaged part of me is just amazed that people would be willing to do the same for me.
I planned to post a photo blow-by-blow of my second chemo treatment, but I thought that the above info was more crucial to know. I'll still try to get the photo blog up when I'm feeling better, as well as add some pix to past posts that I'd been meaning to put up.
Love to all!
Nik
*** I wrote the squiggle part, not to be gross, but because I felt it was very important stuff to know. If you are a cancer patient, please don't assume that this is going to happen to you. I just want you to know and be prepared in case it DOES happen. Everyone seems to have different things happen to them on chemo. I heard a gentlemen talking today that he couldn't handle eating Ritz crackers, but he could handle Town House crackers just fine! Dealing with Cancer and chemo can just be weird sometimes.
Wednesday, July 13, 2011
7-8-11
So, Aaron & my karate family have swept me away to beautiful Mackinaw Island for a weekend getaway. What's the first thing I want to do? Sleep. I had no idea that I would get this tired just getting over here!
Aaron took the kids for a bike ride with the rest of the gang. I think I'm gonna freshen up a bit and maybe walk around and take in some of the shops in a leisurely fashion, sans kids!
..........
I took the opportunity to go through some of the shops in the main strip. A lot of touristy shops, especially for fudge. I found a couple nice biking t-shirts for Aaron, but I want to ask his thoughts first before I buy them. I didn't get to have coffee this morning, so I stopped by Starbucks and treated myself to a Frappachino.
I started to continue my shop-a-thon, when I heard my name hollered from a side street. My first thought was "Who the heck knows me here???" Turns out that the crew had finished their bike ride and were stopping for dinner. What a weird co-inky-dink! We had a really great dinner at the Yankee Rebel Tavern then went back to the hotel so the kids could swim and the grown-ups could hang out. I love these moments in my life where things are just as they should be. I just wished they lasted longer. I ended up getting tired so I came back to the room to to rest. Aaron brought the kids back later. We're all finally in our room relaxing for the night.
Good night, World!
-------------------------------
7/13/11
And the rest of the trip was all downhill from there for me. Without getting into too much detail, there was a personal mishap, a lack-of-sleep induced rage on my part (not a normal characteristic of mine), which spawned an undeserved text to people I care about deeply. After knocking myself out with enough vicodin & ativan to take out an elephant and finally getting some rest, I realized that I'd messed up. At dinner, I tried to explain & apologize and I was walked out on. It broke my heart and made me angry all over again.
Aaron told me not to address it there, to let him deal with it. He knows how I am. I'm very much guilty of wearing my heart on my sleeve, but I did try. I really did! I actually almost made it off the island the next day before I put my feelings about the mess online. While I gained comfort from the love and protectiveness of other friends and family, I didn't realize that it was causing some distress to some of the friends I was having issues with. I diffused the situation as quickly as I could and have since deleted the post.
To those that I have offended: I sincerely apologize for the mess that I made. This whole thing started only because I wanted to protect my husband. Hopefully, you will understand this and things will work themselves out. You still have my love, regardless.
So, Aaron & my karate family have swept me away to beautiful Mackinaw Island for a weekend getaway. What's the first thing I want to do? Sleep. I had no idea that I would get this tired just getting over here!
Aaron took the kids for a bike ride with the rest of the gang. I think I'm gonna freshen up a bit and maybe walk around and take in some of the shops in a leisurely fashion, sans kids!
..........
I took the opportunity to go through some of the shops in the main strip. A lot of touristy shops, especially for fudge. I found a couple nice biking t-shirts for Aaron, but I want to ask his thoughts first before I buy them. I didn't get to have coffee this morning, so I stopped by Starbucks and treated myself to a Frappachino.
I started to continue my shop-a-thon, when I heard my name hollered from a side street. My first thought was "Who the heck knows me here???" Turns out that the crew had finished their bike ride and were stopping for dinner. What a weird co-inky-dink! We had a really great dinner at the Yankee Rebel Tavern then went back to the hotel so the kids could swim and the grown-ups could hang out. I love these moments in my life where things are just as they should be. I just wished they lasted longer. I ended up getting tired so I came back to the room to to rest. Aaron brought the kids back later. We're all finally in our room relaxing for the night.
Good night, World!
-------------------------------
7/13/11
And the rest of the trip was all downhill from there for me. Without getting into too much detail, there was a personal mishap, a lack-of-sleep induced rage on my part (not a normal characteristic of mine), which spawned an undeserved text to people I care about deeply. After knocking myself out with enough vicodin & ativan to take out an elephant and finally getting some rest, I realized that I'd messed up. At dinner, I tried to explain & apologize and I was walked out on. It broke my heart and made me angry all over again.
Aaron told me not to address it there, to let him deal with it. He knows how I am. I'm very much guilty of wearing my heart on my sleeve, but I did try. I really did! I actually almost made it off the island the next day before I put my feelings about the mess online. While I gained comfort from the love and protectiveness of other friends and family, I didn't realize that it was causing some distress to some of the friends I was having issues with. I diffused the situation as quickly as I could and have since deleted the post.
To those that I have offended: I sincerely apologize for the mess that I made. This whole thing started only because I wanted to protect my husband. Hopefully, you will understand this and things will work themselves out. You still have my love, regardless.
Wednesday, July 6, 2011
Gettin' off my butt, dang it!
7/6/11
I'm trying hard today to get some much needed housework done. Aaron has been doing his best and I so love him for that! But he also works all day and helps with the kids... Anyway, we're getting ready to go for a short getaway (our only vacation this summer) and the house needs some deep down cleaning. Besides, I'm going nuts sitting on my duff all the time.
So far today, I've done laundry and vacuumed, brought down our suitcases, and I'm getting ready to tackle the kitchen. I've been getting tired in between but I make sure to take a break for a bit. I just want to make sure I can get this place back up to snuff before my next round of chemo on Monday. If it's anything like the first round I won't feel up to cleaning again for another week.
This time around, we're dropping the kids of at Camp Grammy & Poppy on the way home Sunday. Aaron's sister and her family are up from Arkansas, so the munchkins will have their cousins to play with there while I'm having my treatment. I won't have to worry about them seeing me at my worst. Aaron & Pop get that privilege! :-P
I also have to sit down with my fancy little pill organizer & spreadsheet and get my pills organized for the next week. Crimeny! I have never had to take so much medicine in my life! Before all this, I was about as healthy as a 40 year old could get, besides my weight, of course. I have trouble taking pills. I get laughed at while I try to "baby bird" them down. (It is pretty funny to watch) Now I have to take them four times a day. And each medicine is on a different schedule. Two of them I have to take just the night before and morning of chemo. One of them is taken on days 2 through 7 after chemo and another one only on days 4, 5, & 6. I have several others that I have to take daily throughout the entire time of treatment. I have painkillers, steroids, allergy meds, anti-depressants & anti-nausea meds out the wazoo! It's hard to keep track of, especially when you've never had to do this before in your life. I can't imagine how Aaron feels about it sometimes. He's been in the same healthy-as-a-horse lifeboat with me. Up until now, that is. I'm glad I figured out how to make the spreadsheet though. That way, whichever of us gets the meds just writes the time in the box, so we don't overlap what I'm getting.
Tomorrow, I get to see Dr. Pummill to get my first bump-out (YAY!!!!) and Dr. Eilender to discuss how I'm feeling on the meds so far and to get some bloodwork done in preparation for next Monday's treatment. I'll let ya know how it goes!
Love to all!!!
PS. Don't sweat the petty things and don't pet the sweaty things.... :-P
I'm trying hard today to get some much needed housework done. Aaron has been doing his best and I so love him for that! But he also works all day and helps with the kids... Anyway, we're getting ready to go for a short getaway (our only vacation this summer) and the house needs some deep down cleaning. Besides, I'm going nuts sitting on my duff all the time.
So far today, I've done laundry and vacuumed, brought down our suitcases, and I'm getting ready to tackle the kitchen. I've been getting tired in between but I make sure to take a break for a bit. I just want to make sure I can get this place back up to snuff before my next round of chemo on Monday. If it's anything like the first round I won't feel up to cleaning again for another week.
This time around, we're dropping the kids of at Camp Grammy & Poppy on the way home Sunday. Aaron's sister and her family are up from Arkansas, so the munchkins will have their cousins to play with there while I'm having my treatment. I won't have to worry about them seeing me at my worst. Aaron & Pop get that privilege! :-P
I also have to sit down with my fancy little pill organizer & spreadsheet and get my pills organized for the next week. Crimeny! I have never had to take so much medicine in my life! Before all this, I was about as healthy as a 40 year old could get, besides my weight, of course. I have trouble taking pills. I get laughed at while I try to "baby bird" them down. (It is pretty funny to watch) Now I have to take them four times a day. And each medicine is on a different schedule. Two of them I have to take just the night before and morning of chemo. One of them is taken on days 2 through 7 after chemo and another one only on days 4, 5, & 6. I have several others that I have to take daily throughout the entire time of treatment. I have painkillers, steroids, allergy meds, anti-depressants & anti-nausea meds out the wazoo! It's hard to keep track of, especially when you've never had to do this before in your life. I can't imagine how Aaron feels about it sometimes. He's been in the same healthy-as-a-horse lifeboat with me. Up until now, that is. I'm glad I figured out how to make the spreadsheet though. That way, whichever of us gets the meds just writes the time in the box, so we don't overlap what I'm getting.
Tomorrow, I get to see Dr. Pummill to get my first bump-out (YAY!!!!) and Dr. Eilender to discuss how I'm feeling on the meds so far and to get some bloodwork done in preparation for next Monday's treatment. I'll let ya know how it goes!
Love to all!!!
PS. Don't sweat the petty things and don't pet the sweaty things.... :-P
Thursday, June 30, 2011
The strawberry jam packs a whallop!
I had thought to try to give the blow-by-blow of everything that has happened since the post I drafted on 6/9. However, there was a lot of meetings amongst the doctors, then the doctors and me, and a lot of back and forth in between. It would have gotten confusing in a hurry. So, I'm gonna lay it out as simply as I can.
I did receive the results back on the OncoTypeDX test. I scored low, which is favorable and basically amounted to a possible 10% chance of recurrence without chemo, 5% with chemo. We were seriously considering skipping chemo with those kinds of odds in our favor. However, as I mentioned before, the cancer had been trying to spread. Even though the tumors hadn't escaped the confines of my breast area, there was a chance that maybe some cells had and that they could possibly a different genetic type than was detected by the test.
Aaron & I talked about it and I decided to take the chemo anyway, as a safety precaution. I would SO kick myself a couple years down the line if another tumor cropped up and I hadn't done anything to safeguard, ya know? So we talked to the kiddos about it and they're onboard. I had a dual medport inserted in my chest to allow the medicine to be administered more easily. I had my friend, Tiff, give me a pixie cut so that all the kids we are usually around will have a chance to adjust before I lose my hair.
Last weekend was my town's Relay for Life. The karate school's demo team got to perform for the walkers. I was asked to break a board at the end of the performance and the whole gang gave me a group hug once I did! To say that I felt loved would be a total understatement!
The next morning was the Survivors ceremony and breakfast. We released butterflies, although I think the little buggers wanted come home with us instead. :-D Each of the survivors came up and told their name, type of cancer, and how long they had survived it. (I just hope I didn't sound like a total dweeb!) Then we walked a lap around the park together. It was all very emotional.
This past Monday, I had my first treatment. The schedule is a pretty basic one. Over the next two months, I have four treatments of two medicines (Adriamycin & Cytoxan) in two week increments. During the three months following, I have twelve weekly treatments with a single medicine (Taxol). After that comes radiation for 6 weeks, 5 days a week. At least I get the weekends off. :-P
So, I go into the treatment center with my bag full of goodies, reading material, a blanket, & my knitting. My attendant, Rob, was very nice and explained everything that was going to happen. They drew some blood from my port for testing, flushed it out with saline, gave me some more anti-nausea meds (on top of what I'd already taken). Then came the mojo juice. One was clear and didn't look like much of anything, but the other Looked like strawberry jam in a packet. I didn't feel anything different as it went in, but I gotta say watch that next bathroom trip afterwards! I had to call poor Rob over to make sure something wasn't wrong with me.... I don't have that equipment anymore! Turns out that there's a lot of dye in that strawberry jam!
The next day, Pop took me shopping to get my mind off of things. I felt bad... I ran the poor man ragged! But we did have fun with the kiddos.
Yesterday and today, the side effects kicked in and I had forgotten that I was supposed to get a neulasta injection the previous day to boost my blood cell counts. I'll just keep it short to say that it's been a pretty miserable couple of days. I'm on enough medicine right now that I didn't get sick. It didn't stop my tummy from getting upset or my muscles & bones from getting achy though. My kiddos were total troopers yesterday (they didn't want to leave me) and they went to a friend's house today (Thank you, Carmen!!!)
So with this updated report, I'll just say that we're down one bad-juju treatment with 3 to go. The rest will come in time and I'm gonna go get some rest now. Love to all!!!
I did receive the results back on the OncoTypeDX test. I scored low, which is favorable and basically amounted to a possible 10% chance of recurrence without chemo, 5% with chemo. We were seriously considering skipping chemo with those kinds of odds in our favor. However, as I mentioned before, the cancer had been trying to spread. Even though the tumors hadn't escaped the confines of my breast area, there was a chance that maybe some cells had and that they could possibly a different genetic type than was detected by the test.
Aaron & I talked about it and I decided to take the chemo anyway, as a safety precaution. I would SO kick myself a couple years down the line if another tumor cropped up and I hadn't done anything to safeguard, ya know? So we talked to the kiddos about it and they're onboard. I had a dual medport inserted in my chest to allow the medicine to be administered more easily. I had my friend, Tiff, give me a pixie cut so that all the kids we are usually around will have a chance to adjust before I lose my hair.
Last weekend was my town's Relay for Life. The karate school's demo team got to perform for the walkers. I was asked to break a board at the end of the performance and the whole gang gave me a group hug once I did! To say that I felt loved would be a total understatement!
The next morning was the Survivors ceremony and breakfast. We released butterflies, although I think the little buggers wanted come home with us instead. :-D Each of the survivors came up and told their name, type of cancer, and how long they had survived it. (I just hope I didn't sound like a total dweeb!) Then we walked a lap around the park together. It was all very emotional.
This past Monday, I had my first treatment. The schedule is a pretty basic one. Over the next two months, I have four treatments of two medicines (Adriamycin & Cytoxan) in two week increments. During the three months following, I have twelve weekly treatments with a single medicine (Taxol). After that comes radiation for 6 weeks, 5 days a week. At least I get the weekends off. :-P
So, I go into the treatment center with my bag full of goodies, reading material, a blanket, & my knitting. My attendant, Rob, was very nice and explained everything that was going to happen. They drew some blood from my port for testing, flushed it out with saline, gave me some more anti-nausea meds (on top of what I'd already taken). Then came the mojo juice. One was clear and didn't look like much of anything, but the other Looked like strawberry jam in a packet. I didn't feel anything different as it went in, but I gotta say watch that next bathroom trip afterwards! I had to call poor Rob over to make sure something wasn't wrong with me.... I don't have that equipment anymore! Turns out that there's a lot of dye in that strawberry jam!
The next day, Pop took me shopping to get my mind off of things. I felt bad... I ran the poor man ragged! But we did have fun with the kiddos.
Yesterday and today, the side effects kicked in and I had forgotten that I was supposed to get a neulasta injection the previous day to boost my blood cell counts. I'll just keep it short to say that it's been a pretty miserable couple of days. I'm on enough medicine right now that I didn't get sick. It didn't stop my tummy from getting upset or my muscles & bones from getting achy though. My kiddos were total troopers yesterday (they didn't want to leave me) and they went to a friend's house today (Thank you, Carmen!!!)
So with this updated report, I'll just say that we're down one bad-juju treatment with 3 to go. The rest will come in time and I'm gonna go get some rest now. Love to all!!!
Thursday, June 9, 2011
Post-dated post. See next post for explanation.
6/9/11
I had my post-op appointment with Dr. Gold & Dr. Naill last Wednesday, June 1st.
At Dr. Gold's, we discussed my "surgical pathology" or the details of the tissue that was removed. Turns out that I was a little off the mark on how many lymph nodes were taken. It was 4 nodes on the right-hand side and 6 on the left. Still, to only have a spot on one of the 10 is even better! The tumor itself was 4cm (1.5 inches), about twice as big as we had originally thought.
It seems I wasn't far off calling it my zombie boob either. There was a mass of tissue surrounding the tumor. Reading the report, it doesn't state the exact size but suggests that it was "comedonecrotic". To break it down based on what I've read, it means that the cancer cells travelled into some of the ducts and glands, became blood-starved, and died taking some of the other tissue with it. However, it didn't manage to get past my breast tissue (except for that one lymph node spot). Thank goodness!!! I'm just glad it's gone.
Dr. Gold mentioned that there was going to be a meeting between all of my docs the following Wednesday (6/8) to discuss our next steps and to nail down our treatment options. She thought there might be a chance that we might have to take more lymph nodes from the left armpit to make doubly sure there wasn't more cancer spots in there. She ordered up an OncoTypeDX* test on the removed tissue, but didn't expect the results for a couple of weeks. I'll talk more about this in a bit.
After having some lunch, we went to Dr. Naill's office. Our visit there was pretty short. He said that based on the size of the tumor and the fact that there was only one spot on one node, he didn't think that radiation would be necessary in my case. He also said that he would have to wait until after the Wednesday meeting to make sure it jived with what the rest of the team thought. Aaron & I were both really pleased with this. One treatment worry off the table! Did I say pleased? I meant ecstatic! Yay!!!!!!
We had a little scare over the weekend where someone didn't call in my painkiller prescription or it got lost along the way. In any case, I ran out and had no refills left! Because it was the weekend, I was unable to get ahold of someone to send out a new one. I've cut way back on all of my meds, but I still have to be able to sleep without pain so that I heal well. All I got to say is thank goodness for great friends. They have their own injuries but were willing to offer some of their meds (same as mine) to get me through. I am so blessed!
* OncoTypeDX- http://en.wikipedia.org/wiki/Oncotype_DX
I had my post-op appointment with Dr. Gold & Dr. Naill last Wednesday, June 1st.
At Dr. Gold's, we discussed my "surgical pathology" or the details of the tissue that was removed. Turns out that I was a little off the mark on how many lymph nodes were taken. It was 4 nodes on the right-hand side and 6 on the left. Still, to only have a spot on one of the 10 is even better! The tumor itself was 4cm (1.5 inches), about twice as big as we had originally thought.
It seems I wasn't far off calling it my zombie boob either. There was a mass of tissue surrounding the tumor. Reading the report, it doesn't state the exact size but suggests that it was "comedonecrotic". To break it down based on what I've read, it means that the cancer cells travelled into some of the ducts and glands, became blood-starved, and died taking some of the other tissue with it. However, it didn't manage to get past my breast tissue (except for that one lymph node spot). Thank goodness!!! I'm just glad it's gone.
Dr. Gold mentioned that there was going to be a meeting between all of my docs the following Wednesday (6/8) to discuss our next steps and to nail down our treatment options. She thought there might be a chance that we might have to take more lymph nodes from the left armpit to make doubly sure there wasn't more cancer spots in there. She ordered up an OncoTypeDX* test on the removed tissue, but didn't expect the results for a couple of weeks. I'll talk more about this in a bit.
After having some lunch, we went to Dr. Naill's office. Our visit there was pretty short. He said that based on the size of the tumor and the fact that there was only one spot on one node, he didn't think that radiation would be necessary in my case. He also said that he would have to wait until after the Wednesday meeting to make sure it jived with what the rest of the team thought. Aaron & I were both really pleased with this. One treatment worry off the table! Did I say pleased? I meant ecstatic! Yay!!!!!!
We had a little scare over the weekend where someone didn't call in my painkiller prescription or it got lost along the way. In any case, I ran out and had no refills left! Because it was the weekend, I was unable to get ahold of someone to send out a new one. I've cut way back on all of my meds, but I still have to be able to sleep without pain so that I heal well. All I got to say is thank goodness for great friends. They have their own injuries but were willing to offer some of their meds (same as mine) to get me through. I am so blessed!
* OncoTypeDX- http://en.wikipedia.org/wiki/Oncotype_DX
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