Today was a sour lemon sucking day. I had my Strong Chemo Date (TCH) with the lovely aqua chair. I got there at 9:30, checked in by 10:00 and for the next 4 hours two different nurses tried to get my port to work. It wouldn't cooperate. They used about 12 syringes of saline, and a few of heparin, to flush it out, but it would NOT give a blood return. Under no circumstances. I laid flat back in the chair, I stood straight up, with my arms straight out, with my arms in super-cleavage making position, bent over at the waste-shoulder hunched-deep breath, neck this way, neck that way, one foot in one foot out do the hokey pokey turn all about... nothing worked. Once the nurse got a small blood return, very spotty and weak but just enough to flush the saline out, and then nothing for the blood tests they had to run. The last resort was putting a chemical in the catheter that would dissolve any junk that might be in there. They affectionately call it "chemo draino." Conclusion: My port does not work.
Remember my port? I was supposed to have it placed on a Friday? The doctor doing the surgery (in an operating room under anesthesia) couldn't find my subclavical vein and punctured an artery instead. Instead of risking puncturing a lung she just closed me up and gave up. Then 2 days later the next Monday I had to go to Interventional Radiology and have them do it under fluoroscope guidance. I was awake and aware during that whole surgery and probably heard things I shouldn't have. I didn't have a good feeling when it was done. Just a gut feeling.
The port site is finally healed. The whole area is numb so I barely feel the needle punctures. The scar is healed. The neck site is really ugly. I can see the catheter sticking out when I turn my neck and there's a visible bump where the catheter turns into my vein. You can even see it on the pictures I posted. I still occasionally wake up with a cramping like pain at the neck site but for the most part my head/neck aches have subsided enough to tolerate without drugs.
Now what happens? I will have to go back to the hospital sometime this week and have a dye test run to see where the problem is. If the catheter is kinked or too short and running into the wall of the vein instead of bending. (My guess is the latter, based on what I "heard" in the OR) How do they fix it? My guess is to go back in and straighten it, or take the catheter out and run a longer one. Another surgery? More scars, more tape, more blisters, more pain, and a helluva lot more money to pay.
I'm feeling a bit down tonight. I'm super tired. A bit depressed. But I guess I just gotta do what I gotta do. I have to have port access, it's been strongly advised by every nurse I talked to and every doctor I talked to. I have lousy vein access and they can only use one arm. I have approximately 16 more weekly infusions and 13 every three weeks afterwards to still complete over the course of a year.
I'm starting to hate lemons. I'm going to bed.
Tuesday, January 31, 2012
Monday, January 30, 2012
Becoming Brave.
The time was right. On Sunday I finally got brave enough to cut my hair off. Actually, my husband used his clippers and cut it for me. He knows how to use those things better than I do! First he did his best to give me a mohawk. This is my "I'm in pain, take the picture quick while I'm giving you a horse smile" picture:
And a side view. I think you can see the shape of the Mohawk better here. The long part was set for one inch and the short part is shaved to 1/8" I think.
We laughed about it. We decided Michael will never be a barber for other people. Just himself. (As a matter of fact, after it was all done, we had the exact same haircut! Hmm.)
Afterward he cut it all off at the shortest length. I couldn't believe the pile of hair on the floor! And all over me. What really surprised me was how dark my hair looked in that pile. I've always been a natural blond. When I lived in Arizona it was a nice golden blond. But lately it's turned really dark. With a beautiful streak of grey in the front. On the floor it almost looked black! I wonder what color will grow back in... ?
This morning I took some pictures of my buzz cut in the mirror. Some of them looked really painful. It's hard to have a natural look on your face when you're taking your own picture. The jokes you tell yourself to make you smile or laugh naturally just aren't all that funny, ya know?
Bah. It's not so bad. It's just really COLD! I can see where the short hairs are already falling out so I won't keep this style for long! I had to run a lot of errands today and was a bit nervous to go out in public for the first time like this. But you know what? I felt great today. Physically and mentally great. I think that helped. I started the day out with a headscarf with my new grey fleece hat over it (it was cold this morning!) and a down coat. As the day wore on, it got warmer (upper 40's!) and the sun was shining and I soon ditched the fleece hat. I walked around IKEA and JCPenny with my headscarf and no coat and I lived to tell about it! I just held my head up and strutted around and smiled if someone looked at me. It was all good. I don't know why I was so nervous about it. Silly me.
Oh, I did get one comment from someone. At Barnes and Noble, when I was still wearing the fleece hat over the scarf. I was at the cafe getting some coffee and when I was walking away, this little boy, maybe about 3, saw me and tells him mom "she's wearing a hat. And she has a cookie." Observant little bugger! (note: I had a cookie. I am calorie storing. The next few weeks I will feel like puking around food and will probably lose another 5 lbs. That's my story and I'm sticking to it!)
Here's an awesome positive thing. It took me exactly 15 minutes this morning to get a quick shower, put on makeup and dry my hair (hehe)! That means I can get 15 minutes more sleep in the morning, woohoo!
Tomorrow I will be in chemo all day again. The make-me-feel-crappy stuff. But I know what to expect this time around so I will be more prepared to kick some ass and feel better doing it. Maybe I'll have my sister take some pictures. She can make me laugh.
Afterward he cut it all off at the shortest length. I couldn't believe the pile of hair on the floor! And all over me. What really surprised me was how dark my hair looked in that pile. I've always been a natural blond. When I lived in Arizona it was a nice golden blond. But lately it's turned really dark. With a beautiful streak of grey in the front. On the floor it almost looked black! I wonder what color will grow back in... ?
This morning I took some pictures of my buzz cut in the mirror. Some of them looked really painful. It's hard to have a natural look on your face when you're taking your own picture. The jokes you tell yourself to make you smile or laugh naturally just aren't all that funny, ya know?
Oh, I did get one comment from someone. At Barnes and Noble, when I was still wearing the fleece hat over the scarf. I was at the cafe getting some coffee and when I was walking away, this little boy, maybe about 3, saw me and tells him mom "she's wearing a hat. And she has a cookie." Observant little bugger! (note: I had a cookie. I am calorie storing. The next few weeks I will feel like puking around food and will probably lose another 5 lbs. That's my story and I'm sticking to it!)
Here's an awesome positive thing. It took me exactly 15 minutes this morning to get a quick shower, put on makeup and dry my hair (hehe)! That means I can get 15 minutes more sleep in the morning, woohoo!
Tomorrow I will be in chemo all day again. The make-me-feel-crappy stuff. But I know what to expect this time around so I will be more prepared to kick some ass and feel better doing it. Maybe I'll have my sister take some pictures. She can make me laugh.
Thursday, January 26, 2012
Hair today, gone tomorrow.
Yep folks, this is it. The end is near. The end of hair. Yesterday I was taking a shower and shampooing up the tresses when I looked at my hands and found gobs of hair. I rinsed and pulled more hair off my hands and between my fingers. And had to pick it off my body.... and the tub floor. Today was the same shower scene. At first I put on a shower cap thinking I could preserve some of the hair from coming out, then halfway through I said screw it... I'm not going to save anything. As if I could. I just enjoyed the warm water on the back of my head/neck (because I'm still living with the dang headaches!) And then trying to get the loose hairs off my body. Not fun. Tonight after brushing my teeth I started combing my fingers through my hair to get the loose hairs out so they wouldn't end up in my bed. It was freaky. Again, just pulling handfuls of hair strands out. And a few clumps. Ew. Looking at me, you can't really tell that I've lost so much hair. I started out with a lot so I'm guessing it'll be a few days before it looks thinner. Maybe it'll all come out in clumps tomorrow. Who knows?
It just sucks. Another big change. Sure, it means the chemo is working. That's a good thing. But I could tell the chemo was working because of my raw mouth sores and screwed up GI system too. But the hair thing... it's announcing to the world, to strangers, Hey, I have cancer! Well, it's no secret. I didn't want to keep it a secret because I couldn't bear going through this alone. I told most of my neighbors. (Actually I told a few neighbors and one of them told everyone else, lol) All my friends know. I even told the cashier at the grocery store, and of course the pharmacist. But they all know on MY terms. I chose to tell them. Walking around with no hair and looking like a cancer patient takes the choice away from me.
Then there's the question: to wig or not to wig. I sat down with the American Cancer Society wig boutique lady and picked out a wig. I don't have it yet. But I'm weirded out by wearing a wig. I picked a cute style, but I still look at a stranger in the mirror. It still looks like a wig. I'm not sure if I would be more self conscious wearing a wig or wearing a headscarf. It seems like wearing a wig is like hiding the real me, whereas wearing a headscarf or hat is just the me the way I am. Love me or leave me alone.
I knew it was coming. I'm trying to be brave about it. Trying to laugh a little about it. C and I were watching you tube videos about tying scarves on your head and I started wrapping a turban on her head. She said she looked medieval and I said she just looked evil and we were laughing so hard. That's a good thing. People are giving me all sorts of advice that I appreciate so much. But what it comes down to is what I feel I should do and when, on my terms. I am going to take control and shave it when I feel the time is right. I suspect it may be this weekend. I am going to give myself a mohawk first though, and take a picture. And laugh. Maybe cry a bit for the loss. Then put on a nice warm hat and go on with life.
More tomorrow...
It just sucks. Another big change. Sure, it means the chemo is working. That's a good thing. But I could tell the chemo was working because of my raw mouth sores and screwed up GI system too. But the hair thing... it's announcing to the world, to strangers, Hey, I have cancer! Well, it's no secret. I didn't want to keep it a secret because I couldn't bear going through this alone. I told most of my neighbors. (Actually I told a few neighbors and one of them told everyone else, lol) All my friends know. I even told the cashier at the grocery store, and of course the pharmacist. But they all know on MY terms. I chose to tell them. Walking around with no hair and looking like a cancer patient takes the choice away from me.
Then there's the question: to wig or not to wig. I sat down with the American Cancer Society wig boutique lady and picked out a wig. I don't have it yet. But I'm weirded out by wearing a wig. I picked a cute style, but I still look at a stranger in the mirror. It still looks like a wig. I'm not sure if I would be more self conscious wearing a wig or wearing a headscarf. It seems like wearing a wig is like hiding the real me, whereas wearing a headscarf or hat is just the me the way I am. Love me or leave me alone.
I knew it was coming. I'm trying to be brave about it. Trying to laugh a little about it. C and I were watching you tube videos about tying scarves on your head and I started wrapping a turban on her head. She said she looked medieval and I said she just looked evil and we were laughing so hard. That's a good thing. People are giving me all sorts of advice that I appreciate so much. But what it comes down to is what I feel I should do and when, on my terms. I am going to take control and shave it when I feel the time is right. I suspect it may be this weekend. I am going to give myself a mohawk first though, and take a picture. And laugh. Maybe cry a bit for the loss. Then put on a nice warm hat and go on with life.
More tomorrow...
Sunday, January 22, 2012
Hope Floats
I love this poem by Emily Dickinson. And now I have more reason to love it because it reminds me of all the beautiful souls I've met. And even though I haven't "met" them all in person, I call them my friends because strangers can't possibly touch my heart like these beautiful people do. More about that later... I love you all, you know who you are!!
Hope Floats
"Hope" is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—
And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—
I've heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.
That perches in the soul—
And sings the tune without the words—
And never stops—at all—
And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—
I've heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.
Saturday, January 21, 2012
Finally... a photo!
We've been meaning to take a family photo since before Christmas. We just never got around to it. We want to write a new "About Us" section on the Artistcellar website and include a picture of ALL of us. Not just me, but Michael, the webmaster and designer of all those fabulous stencils. And of course Celia our little product tester and administrative assistant (and chief nagger at mom to clean up her office space!)
I insisted we do it THIS weekend. Before I lose all my hair. I'm not sure how much longer it's going to last. It's been awfully crawly lately, sometimes the scalp feels like it's sunburned when I scratch it. It's not falling out in clumps yet, but it's been 12 days since my TCH infusion. The American Cancer Society lady said it normally starts around days 12-14. So we'll see.
Of course a photo meant I had to clean up my studio a bit. Which is a good thing. Because I lost my desk again over the past month. And now that I can see it again, I will have room to work on some artwork on Sunday. My hands have been itching to get paint on them and do something creative. So this is the picture we came up with:
Oh yeah, it only took about 10 takes... goofy smiles, weird head angles, blinks... what you can't see in this photo is all the rib poking going on, to make us laugh naturally. Thank goodness for self timers and digital cameras.
Working on a more serious post for tomorrow. AFTER I get some art work done!
I insisted we do it THIS weekend. Before I lose all my hair. I'm not sure how much longer it's going to last. It's been awfully crawly lately, sometimes the scalp feels like it's sunburned when I scratch it. It's not falling out in clumps yet, but it's been 12 days since my TCH infusion. The American Cancer Society lady said it normally starts around days 12-14. So we'll see.
Of course a photo meant I had to clean up my studio a bit. Which is a good thing. Because I lost my desk again over the past month. And now that I can see it again, I will have room to work on some artwork on Sunday. My hands have been itching to get paint on them and do something creative. So this is the picture we came up with:
Working on a more serious post for tomorrow. AFTER I get some art work done!
Thursday, January 19, 2012
Smiling People
Another fairly productive day. My husband said I seem "almost normal." Gasp. Who the heck wants to be normal? Well, aside from anything I put in my mouth making a beeline through my system to the finish line, and my mouth dry and sore and burning, and my nose stuffed with clotting blood (ew) I do seem almost normal from the outside. I feel strong. I'm in a good mood.
It was weird this afternoon though. After Little C came home from school I grabbed her and we went grocery shopping. Not my usual time to go grocery shopping, I normally go during the day on Friday. But since we're supposed to get a big snowstorm tomorrow, I moved it up. Apparently between the hours of 4:30 and 5:30 it's Happy Hour at the local Safeway/Dominick's. People (women) kept looking directly at me and SMILING. Big toothy smiles. No less than 5 people did this. Of course I smiled back. After I checked my head to see if I was wearing my goofy penguin hat. (Nope) After the 4th woman smiled at me, I turned and asked C if I had boogers on my face or a sticker on my forehead. (Mo-om!) It was making me paranoid. Like they knew a secret. Or maybe they knew my secret? Was I wearing a "fellow warrior" vibe? Hmm. I don't "look" any different, I still have my hair... Or were they just shiny happy people? Truly, I'm not used to it. When I normally go to the store there are frazzled moms or Mr. Moms hauling screaming toddlers around, or people wandering around talking into their phones-or worse-hidden headsets so they appear crazy. There are focused people who never look you in the eye, let alone smile openly. Except for the pharmacists of course. (Hi Judy! Hi Jerry!) Everyone else pretty much ignores everyone else. See what I mean about weird?
I don't know. I think I could get used to it. I kinda like being smiled at. But I'll take the penguin hat off first, just to make sure they're not makin' fun of me.
(Note to sister: I love my hat. It keeps my ears really warm. And C is not embarrassed when I wear it!)
It was weird this afternoon though. After Little C came home from school I grabbed her and we went grocery shopping. Not my usual time to go grocery shopping, I normally go during the day on Friday. But since we're supposed to get a big snowstorm tomorrow, I moved it up. Apparently between the hours of 4:30 and 5:30 it's Happy Hour at the local Safeway/Dominick's. People (women) kept looking directly at me and SMILING. Big toothy smiles. No less than 5 people did this. Of course I smiled back. After I checked my head to see if I was wearing my goofy penguin hat. (Nope) After the 4th woman smiled at me, I turned and asked C if I had boogers on my face or a sticker on my forehead. (Mo-om!) It was making me paranoid. Like they knew a secret. Or maybe they knew my secret? Was I wearing a "fellow warrior" vibe? Hmm. I don't "look" any different, I still have my hair... Or were they just shiny happy people? Truly, I'm not used to it. When I normally go to the store there are frazzled moms or Mr. Moms hauling screaming toddlers around, or people wandering around talking into their phones-or worse-hidden headsets so they appear crazy. There are focused people who never look you in the eye, let alone smile openly. Except for the pharmacists of course. (Hi Judy! Hi Jerry!) Everyone else pretty much ignores everyone else. See what I mean about weird?
I don't know. I think I could get used to it. I kinda like being smiled at. But I'll take the penguin hat off first, just to make sure they're not makin' fun of me.
(Note to sister: I love my hat. It keeps my ears really warm. And C is not embarrassed when I wear it!)
Wednesday, January 18, 2012
Zzzzzz....
Very productive day. Cold walk with dog. Worked. Ordered. Emailed. Picked, packed and shipped orders. Packaged stencils. Picked up bags from printer. Picked up bagel for lunch. Helped make cake pops. And dinner.
Headache.
Must.
Sleep.
Now.
XOXOzzzzzz.
Headache.
Must.
Sleep.
Now.
XOXOzzzzzz.
Tuesday, January 17, 2012
Hello, lounge chair!
I had a date with the aqua green vinyl lounge chair again today. It was an easy treatment, just 30 minutes of a bio-therapy called Herceptin. They gave me Benadryl beforehand so I really didn't care what they did. But wait... if it was only a 30 minute treatment... why was I there from 9:30 to 12:30? Hmm. Something stinks...
But seriously, I had an appointment with my Medical Oncologist during my treatment. (Ha! The nurses said I would be DONE before my appointment! Scheduling, Pffft) I had to waltz Alberto my IV pole across the hall for the meeting with Dr. H. She spent over an hour with me, going over my side effects and why and what I can do, etc. She prescribed some painkilling cream for my headaches and some Magic Mouthwash for my mouth sores. And get this... she prescribed caffeine, as in a mug of coffee in the morning, to help my headaches! And... wait for it... Ice Cream! She said it would make my mouth feel better. (Um... yeah! Isn't that what it's for?) We're not worrying about calories either. Probably the first and last time in my life I need to eat more calories. I think I love my doctor...
I was in a good mood when I got home, feeling better mentally. Compared to this morning of course, when I could have started my own Cancer program called "Feel like crap, look crappier." Anyway, I felt better when I got home, albeit a bit tired from the Benadryl. By the afternoon I was ready to kick the UPS man's ass for leaving 2 bundles of cardboard boxes in front on my garage in the sleeting rain. For the amount I paid in shipping for PAPER products you'd think he could at least ring the damn doorbell. I was home! Someone's head is gonna roll when he shows up at work in the morning. Then I'm gonna place a lot of orders tomorrow so he'll have plenty of opportunity to get this right!
I found my sense of humor. It was hiding in the back of the closet where I kicked it last week.
But seriously, I had an appointment with my Medical Oncologist during my treatment. (Ha! The nurses said I would be DONE before my appointment! Scheduling, Pffft) I had to waltz Alberto my IV pole across the hall for the meeting with Dr. H. She spent over an hour with me, going over my side effects and why and what I can do, etc. She prescribed some painkilling cream for my headaches and some Magic Mouthwash for my mouth sores. And get this... she prescribed caffeine, as in a mug of coffee in the morning, to help my headaches! And... wait for it... Ice Cream! She said it would make my mouth feel better. (Um... yeah! Isn't that what it's for?) We're not worrying about calories either. Probably the first and last time in my life I need to eat more calories. I think I love my doctor...
I was in a good mood when I got home, feeling better mentally. Compared to this morning of course, when I could have started my own Cancer program called "Feel like crap, look crappier." Anyway, I felt better when I got home, albeit a bit tired from the Benadryl. By the afternoon I was ready to kick the UPS man's ass for leaving 2 bundles of cardboard boxes in front on my garage in the sleeting rain. For the amount I paid in shipping for PAPER products you'd think he could at least ring the damn doorbell. I was home! Someone's head is gonna roll when he shows up at work in the morning. Then I'm gonna place a lot of orders tomorrow so he'll have plenty of opportunity to get this right!
I found my sense of humor. It was hiding in the back of the closet where I kicked it last week.
Monday, January 16, 2012
Raging Hormones?
Something was raging today. I felt great once I got up. This is the first day since port placement last Monday that I didn't have a constant Tylenol buzz going. I had enough energy to clean and vacuum the bathroom AND my studio. I folded and put away the laundry. Worked on some business stuff. Stuff I NEEDED to do. Not because no one else will but because it helped me feel useful and productive. I hate all the sitting around "resting" stuff. I know, sometimes it's all I can do, but I get mentally antsy when I don't feel like doing anything physically. Hubby has been doing everything else around here, Little C is doing everything she can to take care of me. I really needed to do something normal. It's very hard for me to not feel like a burden when I've always taken care of things before.
Then towards the afternoon I tried printing something and NONE of the three printers in the house would connect to my new laptop. And my old laptop wouldn't even connect to the wireless system. My husband had just couched himself in exhaustion after working on the website all day. I was so frustrated. I just wanted something to work the way it's supposed to. I just burst into tears. And cried for half an hour. Over a stupid (or three) printer. Ugh.
Night sweats. Crying over Stupid. I think my hormones are dying a slow death.
Then towards the afternoon I tried printing something and NONE of the three printers in the house would connect to my new laptop. And my old laptop wouldn't even connect to the wireless system. My husband had just couched himself in exhaustion after working on the website all day. I was so frustrated. I just wanted something to work the way it's supposed to. I just burst into tears. And cried for half an hour. Over a stupid (or three) printer. Ugh.
Night sweats. Crying over Stupid. I think my hormones are dying a slow death.
It's all relative
When people ask me how I'm feeling I'm never sure how to answer. Okay the cashier at the store gets a "great! And you?" because I doubt they really want to know, right? But when friends and neighbors ask... What do I say? "okay..." or "tired..." or ?
It's all relative isn't it? Compared to Friday I had a really good day. Of course my good day included tummy upsets and headaches and biting the inside of my lip again. Compared to my normal days before chemo, my day sucked. But...
In the interest of focusing on the positive, I'll say it was pretty good despite the little health irks. I was able to eat without problems today. I was able to help hubby a bit with some work, preparing the journaling section for the website. We did some product shots and some product descriptions (honestly? He did 90% of it, but I was glad to contribute my 10%) I even made dinner tonight.
So while my day started out shaky with crackers and Tylenol at 7:00 a.m. I fell back asleep until 9:00 a.m. I awoke to the smell of homemade waffles cooking and had no doubt that I was loved. It makes all the difference in the world.
Let's have another good day tomorrow, shall we?
It's all relative isn't it? Compared to Friday I had a really good day. Of course my good day included tummy upsets and headaches and biting the inside of my lip again. Compared to my normal days before chemo, my day sucked. But...
In the interest of focusing on the positive, I'll say it was pretty good despite the little health irks. I was able to eat without problems today. I was able to help hubby a bit with some work, preparing the journaling section for the website. We did some product shots and some product descriptions (honestly? He did 90% of it, but I was glad to contribute my 10%) I even made dinner tonight.
So while my day started out shaky with crackers and Tylenol at 7:00 a.m. I fell back asleep until 9:00 a.m. I awoke to the smell of homemade waffles cooking and had no doubt that I was loved. It makes all the difference in the world.
Let's have another good day tomorrow, shall we?
Saturday, January 14, 2012
Crawling Out...
Yes. Today was a better day than yesterday. I don't think I could have handled one worse. After a slow awakening, Little C and I made some German Pancakes for a late breakfast. For me, breakfast is the easiest/best meal of the day in terms of hunger/how I feel. And German Pancakes are the best!
In the afternoon I actually felt well enough to venture out with my little helper. Get this... we went to Chik-Filet for lunch. A REAL lunch. (Okay, I realize "real" is subjective here, but it wasn't plain crackers!) I had three small chicken strips and a few waffle fries. Hiccuped through the meal but kept everything down, woohoo. Little C helped me grocery shop and then we walked around Blick's Art Supply store for a bit. (Cause you know, I haven't been there for at least a few weeks!) Came home and took a nap, but still... I felt alive, I tell you, Alive! It was nice to do something "normal" for a change.
I'm still on the Tylenol drip (I wish I could hook a drip up to the port!) around the clock. With the drugs my head/neck is tolerable. A little bit of aching in my legs but heck, I'm not complaining about that. My tongue continues to feel weird, my taste buds are dying. Several times throughout the day my scalp feels like it has little ants crawling over it, I think that's my hair follicles dying. The skin on my face was feeling crawly a bit too. The area around my port is itching like crazy as it heals. It's not the port this time (although that sucks and is painful too) it's the skin that was torn apart by an allergic reaction to any/every kind of adhesive the hospital used. I came home with another batch of raw blisters where they used that clear tape to keep the bandages on. The Onc Nurse said I have the most sensitive skin she's ever seen. Great. I've gotta stop trying to be the "best" at everything. So try covering the steri-strips and open sores without using more tape, I dare you. Ugh. I look like someone beat me up.
Yes, despite it all, it was a better day, physically and mentally.
In the afternoon I actually felt well enough to venture out with my little helper. Get this... we went to Chik-Filet for lunch. A REAL lunch. (Okay, I realize "real" is subjective here, but it wasn't plain crackers!) I had three small chicken strips and a few waffle fries. Hiccuped through the meal but kept everything down, woohoo. Little C helped me grocery shop and then we walked around Blick's Art Supply store for a bit. (Cause you know, I haven't been there for at least a few weeks!) Came home and took a nap, but still... I felt alive, I tell you, Alive! It was nice to do something "normal" for a change.
I'm still on the Tylenol drip (I wish I could hook a drip up to the port!) around the clock. With the drugs my head/neck is tolerable. A little bit of aching in my legs but heck, I'm not complaining about that. My tongue continues to feel weird, my taste buds are dying. Several times throughout the day my scalp feels like it has little ants crawling over it, I think that's my hair follicles dying. The skin on my face was feeling crawly a bit too. The area around my port is itching like crazy as it heals. It's not the port this time (although that sucks and is painful too) it's the skin that was torn apart by an allergic reaction to any/every kind of adhesive the hospital used. I came home with another batch of raw blisters where they used that clear tape to keep the bandages on. The Onc Nurse said I have the most sensitive skin she's ever seen. Great. I've gotta stop trying to be the "best" at everything. So try covering the steri-strips and open sores without using more tape, I dare you. Ugh. I look like someone beat me up.
Yes, despite it all, it was a better day, physically and mentally.
Friday, January 13, 2012
Can I quit?
I don't want to do this anymore.
I'm embarrassed to admit this... but I'm going to because I want to be honest. I melted down this morning. I couldn't muster the energy to walk Little C to the bus stop... I felt horrible physically and mentally. I looked out the window at her walking down the street alone and burst into tears. I felt sorry for myself. I was super angry. I'm sick of this. I don't want to go through another 5 shitty cycles of this. I don't know why this is happening to ME. Why? Blah Blah Blah.
I went back to bed with my iPad and read my email, FB comments and blog comments and cried for another 1/2 hour or so. Took some more Tylenol and stomach acid reducer. Got up at 10 a.m. got a long warm shower, dressed and went to work packing and shipping orders. I needed something to focus on. Little C had half day and we made some lunch together, Tilapia Filets and Quinoa. My stomach felt a bit better today, with the exception of hiccups from hell still.
I don't want to be the brave one. Or the strong one. I just want my old life back. I hate that I am putting my family through this. I'm just tired and depressed and want to quit. I hate that I don't really have a choice. I have to get through it. I don't really like the alternative, ya know?
Thanks you everyone for your strength and kindness and prayers. I will make it.
I'm hoping tomorrow is a better day.
I'm embarrassed to admit this... but I'm going to because I want to be honest. I melted down this morning. I couldn't muster the energy to walk Little C to the bus stop... I felt horrible physically and mentally. I looked out the window at her walking down the street alone and burst into tears. I felt sorry for myself. I was super angry. I'm sick of this. I don't want to go through another 5 shitty cycles of this. I don't know why this is happening to ME. Why? Blah Blah Blah.
I went back to bed with my iPad and read my email, FB comments and blog comments and cried for another 1/2 hour or so. Took some more Tylenol and stomach acid reducer. Got up at 10 a.m. got a long warm shower, dressed and went to work packing and shipping orders. I needed something to focus on. Little C had half day and we made some lunch together, Tilapia Filets and Quinoa. My stomach felt a bit better today, with the exception of hiccups from hell still.
I don't want to be the brave one. Or the strong one. I just want my old life back. I hate that I am putting my family through this. I'm just tired and depressed and want to quit. I hate that I don't really have a choice. I have to get through it. I don't really like the alternative, ya know?
Thanks you everyone for your strength and kindness and prayers. I will make it.
I'm hoping tomorrow is a better day.
Thursday, January 12, 2012
Kicked in the Head
That's how I feel today. Like I got kicked on the back of the head. I took a nap sitting up on the couch because it hurts too much to lay down. I don't know if my neck muscles are just screwed up from sleeping funny, due to the pain of the port incisions. So far the Neulesta shot hasn't settled in any major bones. But then again... my neck and head kind of feels like all my glands are swollen like when you get the flu. Hmm.
I had a hard time eating again too. I'm hungry in the morning but I have to make myself eat lunch, and by dinnertime I'm just feeling icky. And this hiccuping is making me crazy! Every time I drink something I end up hiccuping for a few minutes. Or when I eat, my stomach does this weird one big hiccup/heave. It feels like everything just wants to come back up. But I'm not nauseous. Definitely something to talk to the nurse about next week.
I had grand plans for exercising lightly during my ordeal. I walk the kiddo to the bus stop with the dog and go a bit further and home again. That's about all I can handle. We had our first snow fall today and it's usually my job to shovel the driveway. There's no way. I am extremely grateful that my neighbors stopped by (without my asking or prior knowledge) and shoveled the driveway.
I also had an appointment at the American Cancer Society's wig boutique. How depressing to look in the mirror and not see yourself staring back. They also have a program called "Look Good, Feel Better" about how to take care of your appearance when going through treatments and feeling like crap. They teach you how to take care of your skin and put on makeup - when you know you look good, you feel better about yourself. I missed the January class which was this past Monday. Next class is the first week of February. I'm trying to take care of myself. I washed my hair this morning (first shower since surgery Monday!) and put on a bit of makeup, real jeans and shoes, etc. It really does make you lift your chin a bit higher and feel like hiding a bit less. I'm trying...
I wanted to share an article written by David Haas, Family Hospitality Coordinator at Mesothelioma Cancer Alliance. It applies to any kind of cancer. It's about "the benefits of fitness and eating healthy during and after a diagnosis of any kind of cancer. Each cancer has it's limitations, but if one can keep a healthy body, they can have a better chance to overcome this awful disease." Hmm. It sounds like he's been rooting around in my brain the past few days...
Stay In Control of Your Body
Surviving cancer is an exhausting process, and though there is a great deal of
emphasis placed on recovery, you should also be thinking about control. After
going through mesothelioma or any other kind of cancer, you may feel as though
everything is out of your control. Reasserting a feeling of control in your life allows
you to stay positive and motivated during your treatment and your recovery, and it
can also drastically improve your outlook on the way that your life is going.
According to Dr. Matthew Hoffman at WebMD
Studies show that not only can exercise prevent cancer, but that it can also prevent
it from recurring. Exercise gives you an opportunity to use your body and to make
it do work. In the process, you will be releasing endorphins that give you a natural
high, and you will also be helping your body recondition after what might have been
a long rest period. Choose a form of exercise that you enjoyed before your diagnosis,
or learn a new activity that you have always wanted to try. Always consult with a
doctor before starting any new exercise regimen.
Another way to take control of your body is to focus on your grooming. Cancer
treatment is a highly stressful time, and you may have been doing the bare
minimum for a while. Go to a spa and try a full body treatment or simply take a few
small minutes out of every day to pamper yourself. Even painting your nails can
have a positive effect. Baby your skin, paint your nails, or accessorize your favorite
outfit in a new way.
Spend intimate time with your significant other. Sensuality is another thing that
might have been pushed aside during the stress of cancer treatment, and it may be
a thing that is hard to reclaim. Speak frankly with your partner about your needs
and how they might have changed or been altered. While speaking about intimate
matters may be awkward or uncomfortable at first, it can also be liberating to talk
about your body in a way that is unrelated to cancer. It establishes you as a sensual,
sexual person.
If you are recovering from cancer, it is time to make your body your own once again.
Take control of your body and remember that it is a part of you and that despite
your illness, it is still a beautiful and important thing.
Surviving cancer is an exhausting process, and though there is a great deal of
emphasis placed on recovery, you should also be thinking about control. After
going through mesothelioma or any other kind of cancer, you may feel as though
everything is out of your control. Reasserting a feeling of control in your life allows
you to stay positive and motivated during your treatment and your recovery, and it
can also drastically improve your outlook on the way that your life is going.
According to Dr. Matthew Hoffman at WebMD
Studies show that not only can exercise prevent cancer, but that it can also prevent
it from recurring. Exercise gives you an opportunity to use your body and to make
it do work. In the process, you will be releasing endorphins that give you a natural
high, and you will also be helping your body recondition after what might have been
a long rest period. Choose a form of exercise that you enjoyed before your diagnosis,
or learn a new activity that you have always wanted to try. Always consult with a
doctor before starting any new exercise regimen.
Another way to take control of your body is to focus on your grooming. Cancer
treatment is a highly stressful time, and you may have been doing the bare
minimum for a while. Go to a spa and try a full body treatment or simply take a few
small minutes out of every day to pamper yourself. Even painting your nails can
have a positive effect. Baby your skin, paint your nails, or accessorize your favorite
outfit in a new way.
Spend intimate time with your significant other. Sensuality is another thing that
might have been pushed aside during the stress of cancer treatment, and it may be
a thing that is hard to reclaim. Speak frankly with your partner about your needs
and how they might have changed or been altered. While speaking about intimate
matters may be awkward or uncomfortable at first, it can also be liberating to talk
about your body in a way that is unrelated to cancer. It establishes you as a sensual,
sexual person.
If you are recovering from cancer, it is time to make your body your own once again.
Take control of your body and remember that it is a part of you and that despite
your illness, it is still a beautiful and important thing.
Thanks David.
Hopefully tomorrow will be a better day. I did find my Norco prescription so tonight should be a better night. A good night's sleep can make a big difference too :-)
Wednesday, January 11, 2012
Blurry Brain
Cycle 1 Day 2.
I thought I had a few days before the side effects hit. I hope I'm not in for a big surprise... woke up today feeling a bit blurry in the brain. Not nauseous, not dizzy, just a little light in the brain. Hard to explain. I've been trying to pay close attention to my body but sometimes things are hard to describe. Like my tongue. It feels weird. Like I drank a hot beverage but didn't quite burn it. I also had a face flushing episode where my face turned bright red and got hot. It went away after about 20 minutes. I pretty much lost my appetite as well. It's much harder than I thought to force myself to eat. I had a Trader Joe's Slice of french toast with agave nectar syrup this morning. Around 1:30 I forced a mini bagel with peanut butter down the hatch. A few hours later I had a greek yogurt. At 7:00 I had a bowl of Wonton soup with vegetables from Whole Foods. Not a whole lot of food... but ick. Everything just turns me off. I didn't even manage my 8 cups of water... I counted the soup as one cup and still only came to 7. The weird thing is... I had the hiccups all day! Every time I ate or drank something I got the hiccups and it felt like it was gonna come right up again. And heartburn... much worse than normal. Hello Tums. I think I need to go back to plain water, I tried flavoring my trough with Vitamin Zero water, I think even the Stevia was too much for my stomach to handle. Back to water...
And then this evening my neighbor/friend Amy came over to see how I was doing and dropped off an uber-cool stainless steel water bottle... to remind me to drink my water and look cool doing it. It was very sweet, and perfect timing. She is an inspiration, being a long term survivor of Hodgkins Lymphoma. Thanks Amy!
I did get my Neulesta shot today, right in the belly fat. IF I get side effects they will hit me tomorrow with bone pain and flu-like symptoms. Oh Joy. I have an appointment at the American Cancer Society wig boutique tomorrow and we're expecting our first snow of the season :-( But the worst part of today? I LOST my Norco prescription! I put it in a Very Safe Place yesterday. I remember folding up the letter size sheet so it was the size of the script. I thought I stuck it in my calendar, which I carry with me... or my notebook/journal... it's NOWHERE to be found. I don't even remember which doctor prescribed it. Can I blame it on chemo brain already??
I thought I had a few days before the side effects hit. I hope I'm not in for a big surprise... woke up today feeling a bit blurry in the brain. Not nauseous, not dizzy, just a little light in the brain. Hard to explain. I've been trying to pay close attention to my body but sometimes things are hard to describe. Like my tongue. It feels weird. Like I drank a hot beverage but didn't quite burn it. I also had a face flushing episode where my face turned bright red and got hot. It went away after about 20 minutes. I pretty much lost my appetite as well. It's much harder than I thought to force myself to eat. I had a Trader Joe's Slice of french toast with agave nectar syrup this morning. Around 1:30 I forced a mini bagel with peanut butter down the hatch. A few hours later I had a greek yogurt. At 7:00 I had a bowl of Wonton soup with vegetables from Whole Foods. Not a whole lot of food... but ick. Everything just turns me off. I didn't even manage my 8 cups of water... I counted the soup as one cup and still only came to 7. The weird thing is... I had the hiccups all day! Every time I ate or drank something I got the hiccups and it felt like it was gonna come right up again. And heartburn... much worse than normal. Hello Tums. I think I need to go back to plain water, I tried flavoring my trough with Vitamin Zero water, I think even the Stevia was too much for my stomach to handle. Back to water...
And then this evening my neighbor/friend Amy came over to see how I was doing and dropped off an uber-cool stainless steel water bottle... to remind me to drink my water and look cool doing it. It was very sweet, and perfect timing. She is an inspiration, being a long term survivor of Hodgkins Lymphoma. Thanks Amy!
I did get my Neulesta shot today, right in the belly fat. IF I get side effects they will hit me tomorrow with bone pain and flu-like symptoms. Oh Joy. I have an appointment at the American Cancer Society wig boutique tomorrow and we're expecting our first snow of the season :-( But the worst part of today? I LOST my Norco prescription! I put it in a Very Safe Place yesterday. I remember folding up the letter size sheet so it was the size of the script. I thought I stuck it in my calendar, which I carry with me... or my notebook/journal... it's NOWHERE to be found. I don't even remember which doctor prescribed it. Can I blame it on chemo brain already??
Tuesday, January 10, 2012
Let the games begin
 I found this cool pendant in an etsy shop. Click to see. |
This means each "cycle" consists of a start of all three drugs on the 1st day (for me Jan 10th), and just one drug (H) on the 8th day (Jan 17th) and one drug (H) again on the 15th day (Jan 24th). Then Cycle 2 (TCH) starts again after 21 days of the start, also known as Day 22 (Jan 31st). Lather, Rinse, Repeat. Whew. I just have to remember to look at my calendar, remember to go on Tuesdays and follow directions. It's seriously like learning a new language.
Anyway, as other people have told me, once the first time is over, it gets MUCH easier. Now I know where to go and what to expect. I think I did pretty good. No tears at least. Soo much information to retain though. Mostly about controlling side effects and when reactions and side effects are expected to reoccur. The head nurse said that it could be as long as 3 weeks before my hair starts seriously falling out, probably completely by 4 weeks. JUST IN TIME for my birthday on February 10th! Up until then it just starts thinning out. I swear my scalp feels tighter already but it could be just because I'm thinking about it. (Psychological, you know like when you see head lice on TV and your scalp starts crawling in response? LOL)
I pretty much sat in a lounge chair for 8 hours straight except for bathroom breaks. They were able to use the port after poking and prodding my tender swollen skin. I sat for 90 minutes while the Herceptin dripped in, then had to wait an hour with nothing but saline to gauge any reactions to it. I was fine, no reactions whatsover. Then they started the Taxotere for 60 minutes. No reactions during infusion. Finished off with Carboplatin for another 60 minutes. Again, no reactions. It was pretty boring and tiring because I got about 3.5 hours of sleep the night before. Apparently steroids "wire the brain" which was exactly what happened last night. I actually found a comfortable sleep position but my mind was wide awake. Probably some nerves involved too...
I feel fine tonight. Just tired. I'm glad my little sister was there to keep my company and keep my mind off of what was happening. It was probably pretty boring for her too, but the next "big day" infusions should be 4-5 hours instead of 8, which will help. I feel guilty taking up so much of her time, but I'm not going to turn her down if she offers to keep me company!
It's strange not knowing when "side effects" will start... I have to be very conscious of my body and mind and write everything down. The nurses suggested keeping a food diary as well. I'll start that tomorrow since it will look pretty bad when I say I had Oberweis peanut butter chocolate ice cream for dinner! Heck, I think I deserved it! I chased it down a few hours later with a protein shake/drink, so there.
My port site is pretty sore, especially after the nurse took all the sticky Tegaderm tape off. That's that clear tape they put over IV sites and over small incisions. My body is NOT liking adhesives right now. The tape left raw blisters along the edge line and very angry red irritated skin underneath. It also happened last week when the SAVI device was removed from my right breast, the steri-strips caused raw oozing blisters that are finally healed. The blisters hurt more than the actual incisions. The good news is that I DON'T have to wait 5-7 days to take a shower, I can shower on Thursday already, whooopeee!
Tomorrow is a Neulasta shot to help my white blood cells rebuild themselves. It's not a shot in the arse, but rather subcutaneous fat in the belly. I got a lot of that to offer!
Monday, January 9, 2012
Puttin' on the ass kickin' boots
On Friday, after the failed port placement, my doctor made an appointment for me on Monday to have Interventional Radiology put in the port with fancy x-ray equipment. At 1:00 Monday. Ya hear me? They made an appointment for me at 1:00 MONDAY. At 12:15 on Monday the IR department called and said that the Medical Oncologist still wants the port put in and she wanted to schedule it. HUH? My sister, who was sitting across from me, gave the phone the stinky eye and her fighting feathers got ruffled. Which gave me the little push I needed. I told the poor girl on the phone that I already had an appointment for the port placement. She said I wasn't in the system for today. I said "On Friday the appointment was made. I am going to be there at 1:00. The port WILL be placed today." Silence. Put on hold. She came back and said they would find the paperwork (that wasn't filed apparently) and that they will "squeeze" me in and I should still come in at 1:00. Bet your sweet ass I will.
I was there at 1:00 and they got me in right away. They saw I wasn't pleased I guess. It felt good to stand up for my rights as a patient. At about 2:15 all the IV's and electrodes and monitoring stuff was ready, paperwork was finished, bladder was emptied and I was off to the procedure room. I emphasized the fact that although I weigh XX pounds I don't tolerate drugs well and "Less is More". Well the nurse did a great job. I was conscious and alert throughout the whole procedure. Which may or may not be a good thing. I never had that "drugged out" feeling afterward, I talked to my husband about 10 minutes after arriving back in recovery. But on the other hand I heard EVERYTHING the doctors were saying. And the tunneling through the skin reminded me of those pictures you see of doctors doing liposuctions. Jam that tube through the skin to break the connective fibers. Ick.
My neck hurts. The incision area is still fairly numb, but my neck muscles hurt from having my neck facing the side the entire time, and not being able to turn my neck now because this tape is so darn tight. And they said I can't shower for about 5 days? HUH? I had no showering restrictions after Friday's mishap! Gah. Here's a picture of afterwards:
The top incision is really close to my trachea, which feels pretty bruised from the doctor pushing on it to move the catheter further down. I didn't know the jugular vein was so close to the front of the neck. Yes, they had to go up through the skin to the jugular vein, then thread it down to the sub clavicle vein and down towards the heart. Apparently I have naughty veins. And a blue neck and chin.
Tomorrow is the big day. (First Chemo session) I just want it over with. My most excellent sister is going to drive me and stay with me the entire time. Hopefully we can get a few laughs throughout the day, like we did today. Laughter IS the best medicine.
I was there at 1:00 and they got me in right away. They saw I wasn't pleased I guess. It felt good to stand up for my rights as a patient. At about 2:15 all the IV's and electrodes and monitoring stuff was ready, paperwork was finished, bladder was emptied and I was off to the procedure room. I emphasized the fact that although I weigh XX pounds I don't tolerate drugs well and "Less is More". Well the nurse did a great job. I was conscious and alert throughout the whole procedure. Which may or may not be a good thing. I never had that "drugged out" feeling afterward, I talked to my husband about 10 minutes after arriving back in recovery. But on the other hand I heard EVERYTHING the doctors were saying. And the tunneling through the skin reminded me of those pictures you see of doctors doing liposuctions. Jam that tube through the skin to break the connective fibers. Ick.
My neck hurts. The incision area is still fairly numb, but my neck muscles hurt from having my neck facing the side the entire time, and not being able to turn my neck now because this tape is so darn tight. And they said I can't shower for about 5 days? HUH? I had no showering restrictions after Friday's mishap! Gah. Here's a picture of afterwards:
Tomorrow is the big day. (First Chemo session) I just want it over with. My most excellent sister is going to drive me and stay with me the entire time. Hopefully we can get a few laughs throughout the day, like we did today. Laughter IS the best medicine.
Vampire Acess
I have been poked and prodded so many times I've lost count. I look a little like a drug addict, with bruises up and down my arm. My veins are hard to find, especially after having to fast before the surgeries. I have 3 new scars on my right breast, one in my armpit, and now one below my collarbone on the left side. Hopefully today they will place the port in the same incision so I don't have to be cut open in a new place. I know the port placement is a necessity at this point (although the doctors keep telling me, ultimately, EVERYTHING I do is a choice!) Well, yes, I'd rather you didn't blow my veins up every week, thank you.
Yeah, I said every week. My chemotherapy regimen (TCH) is weekly, with both chemo drugs and immunotherapy drugs. I have 18 weeks or 6 sessions of the nasty crap. Tomorrow I start the 5-6 hour session with Taxotere (T), Carboplatin (C), and then Herceptin (H). That is once every three weeks. The weeks in between I go in for the (H) only. After the 6 sessions with (TCH) I can move on to getting the (H) every three weeks so it equals an entire year. Before each session they need to draw blood to get Complete Blood Counts and other type tests throughout the period of time.
Trust me, I understand why I need a port. But it still leaves me shakin' with the willies. I mean, they're going to cut me open and insert tubing into my jugular vein and then connect it to a button for easy access. If I'm going to make my lifeline of blood so available, it should at least be attached to my own handsome vampire! Bah, life's not fair!
I'm off. Fingers crossed it works this time!
Yeah, I said every week. My chemotherapy regimen (TCH) is weekly, with both chemo drugs and immunotherapy drugs. I have 18 weeks or 6 sessions of the nasty crap. Tomorrow I start the 5-6 hour session with Taxotere (T), Carboplatin (C), and then Herceptin (H). That is once every three weeks. The weeks in between I go in for the (H) only. After the 6 sessions with (TCH) I can move on to getting the (H) every three weeks so it equals an entire year. Before each session they need to draw blood to get Complete Blood Counts and other type tests throughout the period of time.
Trust me, I understand why I need a port. But it still leaves me shakin' with the willies. I mean, they're going to cut me open and insert tubing into my jugular vein and then connect it to a button for easy access. If I'm going to make my lifeline of blood so available, it should at least be attached to my own handsome vampire! Bah, life's not fair!
I'm off. Fingers crossed it works this time!
Sunday, January 8, 2012
How did I get here?
I wasn't going to start a "cancer blog". I am a mixed media artist, an art journaler. But I've found cancer gives me no art to work with, at least nothing I can put into images right now. I started a journal, but find it a chore to write in it, my fingers can type much faster, my thoughts can pour out quicker than the hand can write with a pen. This blog is mostly for me right now. I find the need to keep records. To document my life. Right now it's for me, but maybe someday I can help someone get through what I must go through and then it will have some worth.
I have Breast Cancer. (Never in my life did I think I would ever say those words.) The past few months have been a blur, a roller coaster of emotions, the highest highs and the lowest lows. I wrote about it on my Artist blog HERE. Sometimes I stop in my tracks and it hits me- "how the hell did I get here?"
- October 19th-routine mammogram during Breast Cancer Awareness Month.
- October 28th-Another mammo and ultrasound. I knew by the way the nurses treated me that it wasn't good.
- November 3rd-Biopsy with Advanced Breast Care Specialists
- November 8th-The phone call "I have bad news. It's cancer."
- Tears, depression, anger, fear, disbelief, sadness, UNREAL.
Here's the medical speak, a previously unknown foreign language: It's a 2 cm tumor, grade 3, ER+, PR+ and HER2+. A node biopsy was clear. But it's fast growing and "triple positive" and "worrisome" whatever the hell that means. We do surgery, radiation, chemotherapy.
I've had an MRI to make sure it hadn't spread (it hadn't), a lumpectomy to remove the tumor, a re-excision because some margins weren't clear, a high density radiation treatment for five days called brachytherapy... and here I am today, almost ready to start chemotherapy on January 10th. I say almost because my port placement was a failure on Friday so tomorrow I have another surgery where the radiation department will try to place it.
I am completely freaked out about chemotherapy. All my life I've been terrified of the whole concept of putting toxic chemicals in the body to kill both good and bad cells. Of course I never thought it would happen to me. I'm the healthy one, remember? I don't even like to take tylenol for a headache!
So here we go. This is the story of my journey through Cancer-land.
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