All of the people who work in Allegiance Oncology and Hematology are pretty impressive. They remember your name. They stop to visit with you when you pass them on your way to your various appointments within the very large interior of the office. They tell you that you look pretty. They ask how you're doing. And I'm not just referring to the doctors, but the nurse practitioner, the check- in clerk, the schedulers, the oncology nurses, and the technicians who perform the daily blood draws and pressure checks...Hortensia wasn't even scheduled to see me on Wednesday when I went to get my Neulasta shot, but came out to find me and say hello. Everyone. It's a pretty sucky place to have to be, but they sure have figured out a way to make it ok to be there. And I appreciate it.
But probably the most special person that I saw this week, had to be the pharmacy technician who brought my chemo to my nurse, Tracy. Her name is Jamie Spry, and she is a former NW Alternative HS student of mine, (shout out!) who I was very close to when she was my student- graduated, I believe, in 1999. They make a huge deal about getting your chemo drugs...it is triple checked, and I always have to give my name and birth date before each infusion. This week Jamie told me she "mixed my drugs for me herself, with love." Then she went on to tell me how much I andeveryone else at my school pushed her to become something, and without our school, she didn't know how she would have turned out. It was, of course, very humbling to be in that chair, and hear such wonderful things from someone who is having a part in probably saving my life. She's worked at Allegiance for 10 years, and recently bought her own house. I'm so proud of her. Hope we can feature her in our Mountie newsletter as a former NWA alumni.
I've been thinking about my tattoo, the one I want to get when I'm finally finished with this journey...my NP, Ann Winters, has a cute little anchor tattooed on her wrist. I've looked at it several times, and finally got up the courage to ask her about its significance...she said there is a Hebrew verse about the "anchor of hope," and where she works, it's all about the hope... I get it. You have to have hope, just walking in those doors. Every time I walk in, my mindset is hope. I hope to kill my cancer, every last cell of it, with these terrible, but wonderful, treatments. I hope my surgeon is able to get it all, and I won't end up on an episode of " Botched," that great tv show where you are just happy to be you and not them. I hope the cancer hasn't spread...my bone scan results showed it has NOT spread to my bones...big sigh of relief. I hope my hair grows back. I hope to have less symptoms this round than the last...so far, so good, but knock on some wood with me, will you? I hope I am able to keep up my positivity and not let negativity enter into my life. If I cut you off because you're telling me a story about someone you know who "lost their battle, " or about someone's terrible cancer story, please don't be offended...just know, I'm doing what I have to do to stay in my own little positive-only frame of mind. I know there are many people who don't make it, and I do have sympathy and care...I just can't hear about them right now. I need to hear about the survivors, the ones who are still going...and I will take all the positive comments I can get.
Many thanks this week...cards in the mail, a special delivery from Tracy with organic veggies from her garden (yum!), more food from my mom, lunch and self tanner from my friend Sheri...a special visit from my friend Lisa...and today, flowers on my doorstep...it's all so appreciated. I've had so many Facebook friend requests...I think the word is spreading about my cancer, and people want to be connected. I've gotten so many wonderful hair and wig comments...it's a pretty brutal place to be, putting yourself out there like that, pictures of myself with a buzz cut and a long-haired wig....but I'd rather be upfront than have people guessing, or worse, making fun of me for wearing a wig. Yes, I am. And I wore it all day, and it got kind of hot, and snug...and it felt good to take it off at the end of the night...but honestly, the hair had to go. Every shower was a huge, triple handful loss. Combing it, brushing it...loss, loss. The finale had to be, after my two days of short hair, when I picked up a section to " tease" a little bit, and it all just came out. There were bald spots my hair couldn't cover. And I knew it was time. I was about to get in the shower this morning, and couldn't face any more loss...it wasjust too stressful. So I took a pair of scissors...and cut off all of my hair. It was a relief, of sorts...to not have to deal with the loss of chunks from the scalp...and my scalp is sore, and tingly where it's coming out...But overall, I think this will be better. Anything has to be better than having huge globs of hair in your hand...and it was probably a cooking disaster, too. No one shedding like I was should have been anywhere in the kitchen! No worries now...my biggest worry, I'm told, is to stand aside when opening the oven door...because your wig can get scorched! Now how funny is that?
Thursday, July 31, 2014
Wednesday, July 30, 2014
So yesterday I got it in my head that I need a new mattress set, I think it was after my second chemo treatment was over, and we were riding back home, and the memories came back of those two days, during the worst of my first treatment's effects, and I just couldn't get comfortable, any which way I tried to lay in my bed. I told Steve we needed a new mattress. He thought about it for a little less than 3 seconds, and I could tell by the look in his eyes he was ok, he just didn't want to go do the actual shopping for it. "Oh, no," I told him. " We have to go together. There's this entire thing now where they have a machine bed that analyzes your sleeping positions, and steers you in the right direction. We have to go together." And away we went.
After my first chemo treatment two weeks ago, I wandered around the new Vermeulen's store...today we headed to Art Van, my go-to shop. Courteous, nice display, plus...I have a credit card...can't beat all of that. Ok, so we each took a turn lying on the digital bed, and learned that on a scale of 1-3, 3 being firm and 1 being soft, Steve was on the higher end of firm, and I was still still a 3, but closer to a 2. Ok, no worries, we'd find something we both could live with.
Our sales lady was amazing, no pressure, giving us our own pillows to carry around, and making us lay on our sides to check our spinal alignment. I told her I was going through chemotherapy and had various times where I had a lot of body aches and had trouble getting comfortable. She was sympathetic, but not nosy, and I appreciated that.
The first bed...like Goldie Locks...was " too hard." But that second bed...oh my... It felt just right. My eyes started to close and I felt a nap overcoming me. At that point, she handed us a remote control. WTH? A remote control? Oh yes, this, and any bed on the floor if not already a power bed, can be made into a power bed by adding the power platform. And, none of the beds have to be flipped. Anymore, Apparently, a lot has changed in bed making since we bought our set about 12 years ago. Very interesting. I woke from my little wanna-be nap and grabbed that remote. Words like "zero gravity," "head," "foot," and even "massage." Ooohhhhh. I likey! We played around, and decided to try a few other beds. The next one was too hard. Another, too soft. I liked it, but Steve was dying with a big lump between us. Then I saw a clearance bed...it felt amazing, but I was reminded it comes as-is, with no warranty. And a typical warranty? 10-15 years, depending on brand. Ok, scratch that. I'm a warranty girl, anyone who knows me will vouch for that. I distinctly remember getting our current mattress replaced after about a year because it had sagged. Not gonna spend this kind of cash and be s.o.l. Well, Steve? "I just want you to get the bed you want. I want you to be comfortable while you're going through this." Isn't he an amazing husband? After trying two to three more beds, we kept going back to our original love...like Sinead O'Connor once sang..."Nothing compares...to youuuu!" And she was right. We were able to save a little money by getting a variation of the power bed...we didn't get the full bells and whistles, but are able to elevate the head and feet. There is actually a setting called "snore," which elevates the head slightly and is supposed to help with that....Steve, if you feel your head going up in the night...well, at least I'm not hitting you, right? ;). The new bed arrives tomorrow. I also bought a second bed for our old mattresses, to have a guest room in an empty bedroom upstairs. I've wanted to do that for a long while.
I guess I have energy after a treatment. I'm hungry, and am ok to shop. I feel good this morning, too. I'm pretty sure it's after the neulasta shot this afternoon when my energy takes a dive. I actually lost about 7 pounds my first week after my first treatment, but gained back about 4 when I started feeling good again. I wonder if that's to be a pattern, too? This week will be very telling to me. I'm curious if I'll have as hard of a time, or if my body will be adjusted a little better. Please keep good thoughts for me as this week wears on...and I'm pretty sure this will be the last week of my newly cut short hair. The daily loss is getting to me, it's stressful, and I'm about ready to take care of that stress with a pair of scissors.
After my first chemo treatment two weeks ago, I wandered around the new Vermeulen's store...today we headed to Art Van, my go-to shop. Courteous, nice display, plus...I have a credit card...can't beat all of that. Ok, so we each took a turn lying on the digital bed, and learned that on a scale of 1-3, 3 being firm and 1 being soft, Steve was on the higher end of firm, and I was still still a 3, but closer to a 2. Ok, no worries, we'd find something we both could live with.
Our sales lady was amazing, no pressure, giving us our own pillows to carry around, and making us lay on our sides to check our spinal alignment. I told her I was going through chemotherapy and had various times where I had a lot of body aches and had trouble getting comfortable. She was sympathetic, but not nosy, and I appreciated that.
The first bed...like Goldie Locks...was " too hard." But that second bed...oh my... It felt just right. My eyes started to close and I felt a nap overcoming me. At that point, she handed us a remote control. WTH? A remote control? Oh yes, this, and any bed on the floor if not already a power bed, can be made into a power bed by adding the power platform. And, none of the beds have to be flipped. Anymore, Apparently, a lot has changed in bed making since we bought our set about 12 years ago. Very interesting. I woke from my little wanna-be nap and grabbed that remote. Words like "zero gravity," "head," "foot," and even "massage." Ooohhhhh. I likey! We played around, and decided to try a few other beds. The next one was too hard. Another, too soft. I liked it, but Steve was dying with a big lump between us. Then I saw a clearance bed...it felt amazing, but I was reminded it comes as-is, with no warranty. And a typical warranty? 10-15 years, depending on brand. Ok, scratch that. I'm a warranty girl, anyone who knows me will vouch for that. I distinctly remember getting our current mattress replaced after about a year because it had sagged. Not gonna spend this kind of cash and be s.o.l. Well, Steve? "I just want you to get the bed you want. I want you to be comfortable while you're going through this." Isn't he an amazing husband? After trying two to three more beds, we kept going back to our original love...like Sinead O'Connor once sang..."Nothing compares...to youuuu!" And she was right. We were able to save a little money by getting a variation of the power bed...we didn't get the full bells and whistles, but are able to elevate the head and feet. There is actually a setting called "snore," which elevates the head slightly and is supposed to help with that....Steve, if you feel your head going up in the night...well, at least I'm not hitting you, right? ;). The new bed arrives tomorrow. I also bought a second bed for our old mattresses, to have a guest room in an empty bedroom upstairs. I've wanted to do that for a long while.
I guess I have energy after a treatment. I'm hungry, and am ok to shop. I feel good this morning, too. I'm pretty sure it's after the neulasta shot this afternoon when my energy takes a dive. I actually lost about 7 pounds my first week after my first treatment, but gained back about 4 when I started feeling good again. I wonder if that's to be a pattern, too? This week will be very telling to me. I'm curious if I'll have as hard of a time, or if my body will be adjusted a little better. Please keep good thoughts for me as this week wears on...and I'm pretty sure this will be the last week of my newly cut short hair. The daily loss is getting to me, it's stressful, and I'm about ready to take care of that stress with a pair of scissors.
Saturday, July 26, 2014
So, I'm preparing for the loss of my hair. With my first treatment, my nurse, Tracy, told me to expect changes over the next few weeks in my hair. And she was right. I told my mom that my hair doesn't really feel like my hair anymore. For one thing, I'm shedding like crazy. It's in my hairbrush, stuck in my fingertips, on my clothes, and literally blowing on the breeze with my windows of the car rolled down. Yesterday I sat at Marshall High School's baseball field, watching my son Drake play, and it was a little windy...I felt like little wisps of hair were all around me. My scalp feels dry, my hair feels lackluster...and yet, I know the inevitable is coming. I can't stop it. I've ordered some scarves from an online company, awaiting their arrival early this week. I also ordered a sleeping cap, because even though I often wake up with my hair soaking wet from my "change," I'm told your head can get cold at night.
Lately I've been obsessed with the wondering if I will keep my eyelashes and eyebrows. Last night I watched several YouTube videos of women demonstrating how they create eyebrows with makeup tricks...it's amazing what one can do with brushes and powders, pencils and concealer....and of course...some sort of shellac to make it all stay. Because, as they all remind you, simply touching your forehead, or having a hot flash, can make your beautifully drawn and created brows, simply disappear. I imagine myself, at school, with a classroom full of students, wiping away an eyebrow without thinking about it....and the whole eyelash thing... I will definitely wear falsies, if I have a need. But my latest hope is, if I have to lose my hair, please let me keep my eyebrows and eyelashes. I'm told it's about fifty-fifty if they stay or if they go.
I've felt pretty good these last few days...three days, to be precise. I'm wondering if this will become a pattern in my treatment? In the last three days I've been to a baseball game, watched my son close in pitching and get a tremendous hit that was easily a triple, but his sore hamstring made it a double. I've been to the casino, spent the afternoon at the lake with my mom and Drake, and had lunch and shopped with my friend Sheri. I've cleaned house, done laundry, and emptied the dishwasher. I've eaten wonderful meals brought over by my mother in law Florence, my mom, and my sister-in-law Mary. I've had visits from my Aunt Susie and my mom's friend Claudia. I've received my gift of the Kathy Van Zeeland purse, a little love from me, to me, and decided it wasn't bling-y enough to carry, and sent it back. I've watched a few really good movies, including "The Incredible Burt Wonderstone," with Steve Carell, and watched it with my son and his friend.Matt. I was shocked that the two of them actually stayed upstairs with Steve and I for the entire movie, and we all laughed many times, especially at the character played by Jim Carey. I had a visit from my son's friend Mark, and enjoyed catching up with him. He was a regular part of our family for many years, almost like a second son to me. And tomorrow, Drake is getting his.senior pictures taken, so tonight we got a fashion show as we decided, as a family, what he should wear. It was a lot of fun, making him model different things, and figuring out what sports he wants to represent in his photos...baseball, of course, as the Jackson High baseball field is the first stop for his locations. The Armory Arts building will be his second. The soccer field later in the fall for more photos is a distinct possibility. And the ocean beaches of Fire Island in New York, when he goes away for a week with his best friend's family
This is the beginning of Senior year events, and I'm grateful I'm able to start the planning...hopefully I'll be well enough throughout the year for more of the execution of those plans. I'm already looking ahead to his graduation party, and am mildly obsessing, but not really, about the state of my yard, and what it will look like next spring. "You'll just have to hire someone," is my mom's reasoning, and I know she's right. I'm not able to do EVERYTHING right now...but I want to be able to do what's most important. Somehow, I don't want to waste the time that I feel good pulling weeds. I want to spend them with family. And friends. And my students. People I care about. So for my visitors, I'm super happy to see you...just please don't judge me if my house isn't as clean as it usually is, or my yard isn't as well groomed. I'm just happy I feel well enough to greet you at the door and hold that monster of a dog of mine away from you with his two foot tongue...he looks really ferocious, and he may be barking, but just like me, Johann is just happy to see you.
Lately I've been obsessed with the wondering if I will keep my eyelashes and eyebrows. Last night I watched several YouTube videos of women demonstrating how they create eyebrows with makeup tricks...it's amazing what one can do with brushes and powders, pencils and concealer....and of course...some sort of shellac to make it all stay. Because, as they all remind you, simply touching your forehead, or having a hot flash, can make your beautifully drawn and created brows, simply disappear. I imagine myself, at school, with a classroom full of students, wiping away an eyebrow without thinking about it....and the whole eyelash thing... I will definitely wear falsies, if I have a need. But my latest hope is, if I have to lose my hair, please let me keep my eyebrows and eyelashes. I'm told it's about fifty-fifty if they stay or if they go.
I've felt pretty good these last few days...three days, to be precise. I'm wondering if this will become a pattern in my treatment? In the last three days I've been to a baseball game, watched my son close in pitching and get a tremendous hit that was easily a triple, but his sore hamstring made it a double. I've been to the casino, spent the afternoon at the lake with my mom and Drake, and had lunch and shopped with my friend Sheri. I've cleaned house, done laundry, and emptied the dishwasher. I've eaten wonderful meals brought over by my mother in law Florence, my mom, and my sister-in-law Mary. I've had visits from my Aunt Susie and my mom's friend Claudia. I've received my gift of the Kathy Van Zeeland purse, a little love from me, to me, and decided it wasn't bling-y enough to carry, and sent it back. I've watched a few really good movies, including "The Incredible Burt Wonderstone," with Steve Carell, and watched it with my son and his friend.Matt. I was shocked that the two of them actually stayed upstairs with Steve and I for the entire movie, and we all laughed many times, especially at the character played by Jim Carey. I had a visit from my son's friend Mark, and enjoyed catching up with him. He was a regular part of our family for many years, almost like a second son to me. And tomorrow, Drake is getting his.senior pictures taken, so tonight we got a fashion show as we decided, as a family, what he should wear. It was a lot of fun, making him model different things, and figuring out what sports he wants to represent in his photos...baseball, of course, as the Jackson High baseball field is the first stop for his locations. The Armory Arts building will be his second. The soccer field later in the fall for more photos is a distinct possibility. And the ocean beaches of Fire Island in New York, when he goes away for a week with his best friend's family
This is the beginning of Senior year events, and I'm grateful I'm able to start the planning...hopefully I'll be well enough throughout the year for more of the execution of those plans. I'm already looking ahead to his graduation party, and am mildly obsessing, but not really, about the state of my yard, and what it will look like next spring. "You'll just have to hire someone," is my mom's reasoning, and I know she's right. I'm not able to do EVERYTHING right now...but I want to be able to do what's most important. Somehow, I don't want to waste the time that I feel good pulling weeds. I want to spend them with family. And friends. And my students. People I care about. So for my visitors, I'm super happy to see you...just please don't judge me if my house isn't as clean as it usually is, or my yard isn't as well groomed. I'm just happy I feel well enough to greet you at the door and hold that monster of a dog of mine away from you with his two foot tongue...he looks really ferocious, and he may be barking, but just like me, Johann is just happy to see you.
Thursday, July 24, 2014
This has been the greatest day since having my first chemo treatment. I felt really good, and decided to just "go with it." But first, I have to talk about Tuesday night, and my second experience with the Mystic Tan Spray tanning machine.
I wanted to get another tan, and even though I didn't feel that great, decided to go. When I got there, I let My girl at the counter know about my feet, and how I had the darkened soles...she sold me a pair of paper stick-on booties for 75 cents, I got ready, lathered up with the white barrier cream (cream you put on areas you don't want to tan, like the palm of your hands and sides of your feet), and entered the booth. A spray tan consists of you standing in four different positions, and a little brush kind of airbrushes your body, from bottom to top. It's a little "whish-whish" feel, but when the spray got past my knees, to my thighs, it made a giant "sploosh" sound, and nailed my crotch with a super blast of tanning liquid...and then the machine died. I stood there, dripping down my legs, and knew the little voice, guiding me through the positions, wasn't going to come back on.
"Hello!" I yelled, knocking on my door. "I think my machine just died!" My girl came to the door, brought me a towel, and told me to get dressed. She had to tear the machine apart, clean it, reset it, and asked me if I wanted to try it again. The whole thing probably took about 10 minutes, but it felt like an hour. I told her yes, I definitely wanted to do it, I was already there. She thought about it for a minute, then said, "I don't think you'll be much darker on the bottom half than the top half." WTH??? I didn't even think of THAT! I got back in, did my thing, the machine worked perfectly, and went home, worrying about having darker front legs. The next day I noticed stains around the sides of my feet...probably from the pooling drips that ran down my legs...definitely not a great look. Anyway, the need for the golden glow, right? :)
Yesterday I woke up and felt considerably better than the day before, and I talked Steve into going to the casino with me. Granted, it was noon, on a Wednesday, and when I told him my idea, he suggested we go "sometime later in the week." I simply said "I feel good right now and have no idea when I'll feel ok enough to try again. Let's go NOW!." So we went.
Every time we go to Firekeeper's Casino, I drive there, and Steve drives back. It's been our routine since the place opened, and I thought it would be good to go for a ride and get a change of scenery. I felt, I'd say, on a scale of 1-10, about a 6 and 1/2. But, you have to understand, the day before was about a 5, Monday was about a 4, and let's not even talk about last weekend ever again... So, my 6 1/2 self drove us to the casino. I felt the ride wearing on me, and when we arrived, I sat down at a new machine I wanted to try...I'd seen it pictured in the FK Facebook page...SPHINX 3d. Right away, the reels made me dizzy. "Do you think that's the right machine for you to be sitting at?" Steve asked me. I found a dial to turn off the 3d effect...it was immediate relief to my equilibrium. We played different games, and I noticed Steve was hovering. I let him know he could go and do his own thing...like we always do...he still seemed reluctant to leave me, but gave me his general location and stopped lurking over my shoulder, like he was waiting for me to fall off a stool at any second.
I wandered down one row, found some new machines, but realized my "migraine aura " vision was on full blast in the casino. If I try to explain it to someone who has never had aura, it's like everything in my vision tunnels straight ahead, the light dims, and there is a pressure in the sides of the head like where the peripheral vision was stripped away...it's uncomfortable, my left eye also gets a little blurry, and it feels a little like I'm drunk, with cloudy vision. But that little inconvenience was not going to ruin MY time away from home. I've taught a classroom full of students with such an ailment...it certainly wasn't going to stop me from having fun. :). However.... It became obvious, even to me, the "casino energizer bunny," who keeps going, and going, and going, long after everyone is ready to go home, that it was time to leave. I think Steve was shocked. "Kim, we don't have to leave. I can just watch you." No, I needed to get out of there.
The ride home was excruciating.... I felt dizzy, nauseous, and just needed to be HOME! However, I wanted to get Drake a new taillight for his car, so we stopped by the salvage yard and for $65 got my son's car fixed up, good as new. However, that extra time killed me, and by the time we got home, I
took a nausea pill, laid down, and just hoped that the room would stop spinning shortly. It did, and I took a migraine pill, a bath, and relaxed for the rest of the night. I woke up and felt great.
I've learned that many of my aura-like effects may be due to my anti-nausea med...compazine. When I researched the drug online, I learned that it is actually an anti-psychotic drug, generally used for the treatment of schizophrenia. "Well, that's just great. Maybe during this whole cancer ordeal, I won't talk to myself!" Gotta see the humor in these multi-use drugs. When I called the triage nurse, Sue, to complain about that particular med, I thought she'd get me switched to a different anti-nausea...instead, she called back to let me know I had a new drug added, to combat the side effects of the compazine. "Holy crap!" I thought. And the drug prescribed is actually a mood stabilizer drug, used to treat depression. Well, if I wasn't depressed, or psychotic, or nauseous before this whole ordeal, at least I wouldn't be DURING it. Sometimes you just gotta laugh.
I wanted to get another tan, and even though I didn't feel that great, decided to go. When I got there, I let My girl at the counter know about my feet, and how I had the darkened soles...she sold me a pair of paper stick-on booties for 75 cents, I got ready, lathered up with the white barrier cream (cream you put on areas you don't want to tan, like the palm of your hands and sides of your feet), and entered the booth. A spray tan consists of you standing in four different positions, and a little brush kind of airbrushes your body, from bottom to top. It's a little "whish-whish" feel, but when the spray got past my knees, to my thighs, it made a giant "sploosh" sound, and nailed my crotch with a super blast of tanning liquid...and then the machine died. I stood there, dripping down my legs, and knew the little voice, guiding me through the positions, wasn't going to come back on.
"Hello!" I yelled, knocking on my door. "I think my machine just died!" My girl came to the door, brought me a towel, and told me to get dressed. She had to tear the machine apart, clean it, reset it, and asked me if I wanted to try it again. The whole thing probably took about 10 minutes, but it felt like an hour. I told her yes, I definitely wanted to do it, I was already there. She thought about it for a minute, then said, "I don't think you'll be much darker on the bottom half than the top half." WTH??? I didn't even think of THAT! I got back in, did my thing, the machine worked perfectly, and went home, worrying about having darker front legs. The next day I noticed stains around the sides of my feet...probably from the pooling drips that ran down my legs...definitely not a great look. Anyway, the need for the golden glow, right? :)
Yesterday I woke up and felt considerably better than the day before, and I talked Steve into going to the casino with me. Granted, it was noon, on a Wednesday, and when I told him my idea, he suggested we go "sometime later in the week." I simply said "I feel good right now and have no idea when I'll feel ok enough to try again. Let's go NOW!." So we went.
Every time we go to Firekeeper's Casino, I drive there, and Steve drives back. It's been our routine since the place opened, and I thought it would be good to go for a ride and get a change of scenery. I felt, I'd say, on a scale of 1-10, about a 6 and 1/2. But, you have to understand, the day before was about a 5, Monday was about a 4, and let's not even talk about last weekend ever again... So, my 6 1/2 self drove us to the casino. I felt the ride wearing on me, and when we arrived, I sat down at a new machine I wanted to try...I'd seen it pictured in the FK Facebook page...SPHINX 3d. Right away, the reels made me dizzy. "Do you think that's the right machine for you to be sitting at?" Steve asked me. I found a dial to turn off the 3d effect...it was immediate relief to my equilibrium. We played different games, and I noticed Steve was hovering. I let him know he could go and do his own thing...like we always do...he still seemed reluctant to leave me, but gave me his general location and stopped lurking over my shoulder, like he was waiting for me to fall off a stool at any second.
I wandered down one row, found some new machines, but realized my "migraine aura " vision was on full blast in the casino. If I try to explain it to someone who has never had aura, it's like everything in my vision tunnels straight ahead, the light dims, and there is a pressure in the sides of the head like where the peripheral vision was stripped away...it's uncomfortable, my left eye also gets a little blurry, and it feels a little like I'm drunk, with cloudy vision. But that little inconvenience was not going to ruin MY time away from home. I've taught a classroom full of students with such an ailment...it certainly wasn't going to stop me from having fun. :). However.... It became obvious, even to me, the "casino energizer bunny," who keeps going, and going, and going, long after everyone is ready to go home, that it was time to leave. I think Steve was shocked. "Kim, we don't have to leave. I can just watch you." No, I needed to get out of there.
The ride home was excruciating.... I felt dizzy, nauseous, and just needed to be HOME! However, I wanted to get Drake a new taillight for his car, so we stopped by the salvage yard and for $65 got my son's car fixed up, good as new. However, that extra time killed me, and by the time we got home, I
took a nausea pill, laid down, and just hoped that the room would stop spinning shortly. It did, and I took a migraine pill, a bath, and relaxed for the rest of the night. I woke up and felt great.
I've learned that many of my aura-like effects may be due to my anti-nausea med...compazine. When I researched the drug online, I learned that it is actually an anti-psychotic drug, generally used for the treatment of schizophrenia. "Well, that's just great. Maybe during this whole cancer ordeal, I won't talk to myself!" Gotta see the humor in these multi-use drugs. When I called the triage nurse, Sue, to complain about that particular med, I thought she'd get me switched to a different anti-nausea...instead, she called back to let me know I had a new drug added, to combat the side effects of the compazine. "Holy crap!" I thought. And the drug prescribed is actually a mood stabilizer drug, used to treat depression. Well, if I wasn't depressed, or psychotic, or nauseous before this whole ordeal, at least I wouldn't be DURING it. Sometimes you just gotta laugh.
Monday, July 21, 2014
There's that moment right before calling the oncology office when you ask yourself... "Is this an EMERGENCY?" That was what I asked myself this morning, making a call at 7:30, as soon as the office opened for business. I have a list of symptoms that are considered an emergency situation...a fever over 100.5... Uncontrollable vomiting or diarrhea...the old standby of not breathing or having various body parts swell up.... But what about the symptoms that just don't feel "normal"? Like....I've been SO fatigued that I just can't get comfortable, even to sleep... I've felt dizzy when in a sitting position, almost like I want to topple over to a lay-down position...and the old stand by...I'm so tired, just showering or getting dressed to do anything...tires me out. I've felt like an epic failure these last four days, because I really wanted to be different...someone who doesn't look sick...feel sick...act sick...and have cancer. Apparently, I'm still not doing any skating....
Well. I was awake every hour on the hour last night, just waiting for the office to open so I could ask my questions....mainly....is this normal? And, what can you do for me to make this stop? Is there a shot? A pill? Something to make me feel like I did a week ago, before my first chemo treatment? Apparently, this is very normal. There is no right or wrong way to how a person's body responds to chemo...according to Sue, the triage nurse, I may be having a reaction in accordance with my body. After all, that Neulastat shot is working in my bones, she reminded me. It is suggested I drink more fluids, try Gatorade or juices, take little naps, take a Claritin, take Tylenol....basically, things I've been trying to do since this fog hit. Sue also wants me to call her in the morning if I'm not easing out of this stage of the chemo cycle so they could check my levels, make sure I don't have anemia, need a transfusion, blah blah blah blah blah..
I already have a bone scan scheduled for tomorrow morning...and I've made arrangements for a ride. Hard to believe I don't trust myself to even drive a car...I'll say it again if I haven't already...Thank God I don't have to work. Because right now...I...could...not. I'm glad I've made this decision to do the hardest part first (who made that decision? Oh yeah, I did)...during a time of the year when I can concentrate on nothing but ME. But, it's not easy giving up control...and that's essentially what's going on here... I have no control over where these symptoms take me next. According to a new book given to me called Getting Past the Fear: a Guide to Help You Mentally Prepare for Chemotherapy- by Nancy Stordahl, the author had my exact chemo cocktail, and spoke of the lethargy and fatigue. My two drugs, adriamycin (nicknamed the red devil) and cytoxan are an especially potent cocktail, made to kill my cancer. I need to remind myself that...I'm Killing my Cancer... And probably a few brain cells along the way, too. :). And I need to be good to myself right now. If I was bald right now, I honestly don't think I'd even put on a wig...because that's how little I've cared about my appearance...it's just getting through this moment, this hour, this day... And hoping tomorrow is even better...
Truth: I do feel a little better today than yesterday. At this moment I'm typing on my iPad...yesterday, reading took too much concentration for more that a paragraph or two. Truth: I'm eating healthy, if little meals, mainly provided by loving family or my husband...I have no will to cook, but love those fresh green beans and soup, chicken and fruit....truth: I'm not giving up, this has just been a bump in my road. I'm still gonna kick this cancer's ass...it's just a little more difficult than I originally imagined.
Well. I was awake every hour on the hour last night, just waiting for the office to open so I could ask my questions....mainly....is this normal? And, what can you do for me to make this stop? Is there a shot? A pill? Something to make me feel like I did a week ago, before my first chemo treatment? Apparently, this is very normal. There is no right or wrong way to how a person's body responds to chemo...according to Sue, the triage nurse, I may be having a reaction in accordance with my body. After all, that Neulastat shot is working in my bones, she reminded me. It is suggested I drink more fluids, try Gatorade or juices, take little naps, take a Claritin, take Tylenol....basically, things I've been trying to do since this fog hit. Sue also wants me to call her in the morning if I'm not easing out of this stage of the chemo cycle so they could check my levels, make sure I don't have anemia, need a transfusion, blah blah blah blah blah..
I already have a bone scan scheduled for tomorrow morning...and I've made arrangements for a ride. Hard to believe I don't trust myself to even drive a car...I'll say it again if I haven't already...Thank God I don't have to work. Because right now...I...could...not. I'm glad I've made this decision to do the hardest part first (who made that decision? Oh yeah, I did)...during a time of the year when I can concentrate on nothing but ME. But, it's not easy giving up control...and that's essentially what's going on here... I have no control over where these symptoms take me next. According to a new book given to me called Getting Past the Fear: a Guide to Help You Mentally Prepare for Chemotherapy- by Nancy Stordahl, the author had my exact chemo cocktail, and spoke of the lethargy and fatigue. My two drugs, adriamycin (nicknamed the red devil) and cytoxan are an especially potent cocktail, made to kill my cancer. I need to remind myself that...I'm Killing my Cancer... And probably a few brain cells along the way, too. :). And I need to be good to myself right now. If I was bald right now, I honestly don't think I'd even put on a wig...because that's how little I've cared about my appearance...it's just getting through this moment, this hour, this day... And hoping tomorrow is even better...
Truth: I do feel a little better today than yesterday. At this moment I'm typing on my iPad...yesterday, reading took too much concentration for more that a paragraph or two. Truth: I'm eating healthy, if little meals, mainly provided by loving family or my husband...I have no will to cook, but love those fresh green beans and soup, chicken and fruit....truth: I'm not giving up, this has just been a bump in my road. I'm still gonna kick this cancer's ass...it's just a little more difficult than I originally imagined.
Friday, July 18, 2014
I've got to admit, I was really hoping I'd be one of those lucky ones, "skating" through their chemo with few to any side effects. These past two days I've really been put in my place, so to speak. I'm convinced I'm having the side effects that go with the second day chemo injection, the one intended to build up my white cell count. The effects can be flu-like, with dizziness and fatigue. Check, check, check. Little sleep, appetite, and motivation? Check, check, and check again. Skating? From the bed, to the couch, to a sitting position...probably the stupidest thing I did was go for a bike ride.
At about 11 yesterday morning, I was convinced all I needed to snap out of this funk was some fresh air and exercise. "Steve!" I yelled. "Let's go for a bike ride." He thought I was joking...I was kind of dizzy and didn't have a great amount of balance, but I wanted to do something, dammit! Something to make me feel normal! We rode all of about 5 miles, and I was a little short of breath (another of those side effects listed with my shot), and forgot to put on sunscreen. We got back and I was so dizzy I kind of fell on the couch...what the hell was I thinking? That somehow by acting normal, I could be normal? Yes, I think that's exactly where my mind was at.
I then got it in my head that I wanted to try that Mystic Tan spray tan booth at my tanner...first visit is free, and if I like it, I can change my regular membership over to the spray kind, as I can't tan in the beds anymore, anyway. I watched a few YouTube videos, and researched online the prep work for your body before getting one of those spray tans...mainly shaving, exfoliating your body really well in the shower, and lots of lotion. Well, that was a lot of work! I had to rest up from all that scrubbing. Flipping channels on the tv, I came across one of those home shopping shows, where an entire hour was devoted to Kathy Van Zeeland purses....my favorite! Omg, maybe I need a new purse? As a gift for myself. For the whole cancer and chemo thing. Yes'm that black lizard one looks amazing, large and Bling-y...just my style. Gotta have it. Never ordered from a tv show before...does that make me pathetic? Or smart? It IS on clearance...regularly $109, for $52.86. I'm a regular smart shopper. And I really do need a new wallet...how about a black lizard Guess one to go with my new purse? eBay has always been my go-to spot...yep! There it is. A little love, coming to me in the mail, from me. I feel almost better, already...maybe after this little nap...
Ok, it's 7:00...if I'm gonna tan, gotta go now. That means I have to drive my car. Oh, yeah, Steve picked it up from the detail shop...better at least look at it and see how it looks...yeah, it looks nice. Sorry I can't really appreciate my shiny chrome wheels and wax job...let's just hope I can drive straight! At the tanner I get step by step instructions on how to do the mystic...lots of barrier cream on feet, hands, elbows, etc. places you don't want to grab the most and turn streaky or orange. It was kind of fun, I got dressed and drove out to the lake to visit my mom and her friend Judy...visited about an hour, them came home. No showering for 4-6 hours...I showered this morning and got the biggest surprise of my life. My feet...the soles...are totally orangey brown. Now how in the hell did that happen? More scrubbing...more dizziness...I swear, who knew showering could take so much out of a person? I'll post a picture, it's kind of funny. This brown foot stain is maybe an analogy for what I'm going through right now...it's telling me to "plant my feet and stop trying to do so much! You are going through chemo right now. You don't have to do it all. Just focus on this moment. You will be ok. You will, eventually, be able to do things like you used to do. You just can't RIGHT NOW. Just rest those ugly, orangey brown soles for a lil' bit." And I can live with that.
At about 11 yesterday morning, I was convinced all I needed to snap out of this funk was some fresh air and exercise. "Steve!" I yelled. "Let's go for a bike ride." He thought I was joking...I was kind of dizzy and didn't have a great amount of balance, but I wanted to do something, dammit! Something to make me feel normal! We rode all of about 5 miles, and I was a little short of breath (another of those side effects listed with my shot), and forgot to put on sunscreen. We got back and I was so dizzy I kind of fell on the couch...what the hell was I thinking? That somehow by acting normal, I could be normal? Yes, I think that's exactly where my mind was at.
I then got it in my head that I wanted to try that Mystic Tan spray tan booth at my tanner...first visit is free, and if I like it, I can change my regular membership over to the spray kind, as I can't tan in the beds anymore, anyway. I watched a few YouTube videos, and researched online the prep work for your body before getting one of those spray tans...mainly shaving, exfoliating your body really well in the shower, and lots of lotion. Well, that was a lot of work! I had to rest up from all that scrubbing. Flipping channels on the tv, I came across one of those home shopping shows, where an entire hour was devoted to Kathy Van Zeeland purses....my favorite! Omg, maybe I need a new purse? As a gift for myself. For the whole cancer and chemo thing. Yes'm that black lizard one looks amazing, large and Bling-y...just my style. Gotta have it. Never ordered from a tv show before...does that make me pathetic? Or smart? It IS on clearance...regularly $109, for $52.86. I'm a regular smart shopper. And I really do need a new wallet...how about a black lizard Guess one to go with my new purse? eBay has always been my go-to spot...yep! There it is. A little love, coming to me in the mail, from me. I feel almost better, already...maybe after this little nap...
Ok, it's 7:00...if I'm gonna tan, gotta go now. That means I have to drive my car. Oh, yeah, Steve picked it up from the detail shop...better at least look at it and see how it looks...yeah, it looks nice. Sorry I can't really appreciate my shiny chrome wheels and wax job...let's just hope I can drive straight! At the tanner I get step by step instructions on how to do the mystic...lots of barrier cream on feet, hands, elbows, etc. places you don't want to grab the most and turn streaky or orange. It was kind of fun, I got dressed and drove out to the lake to visit my mom and her friend Judy...visited about an hour, them came home. No showering for 4-6 hours...I showered this morning and got the biggest surprise of my life. My feet...the soles...are totally orangey brown. Now how in the hell did that happen? More scrubbing...more dizziness...I swear, who knew showering could take so much out of a person? I'll post a picture, it's kind of funny. This brown foot stain is maybe an analogy for what I'm going through right now...it's telling me to "plant my feet and stop trying to do so much! You are going through chemo right now. You don't have to do it all. Just focus on this moment. You will be ok. You will, eventually, be able to do things like you used to do. You just can't RIGHT NOW. Just rest those ugly, orangey brown soles for a lil' bit." And I can live with that.
Wednesday, July 16, 2014
Well, it's 2:00 in the morning and I've been awake since midnight. I crashed about 10:00 ( maybe some of that fatigue they warned about?) but was woken up with a bright light shining in my face two hours later...thanks Steve! Glad your kindle is working for you. Now I'm nauseous, awake, and trolling Facebook in the living room.
I had to go for part two of my chemo yesterday (today)? which was a shot called Neulastat (sp?). It's purpose is to help rebuild my white cell count that the chemo from the day before attacked...they don't want you to have a totally depleted immune system, so this is the reason for the shot. Pain level?.. About a 4... Nothing compared to the cortisone injections in my foot...but still...potential to feel flu- like, and achy the next few days. I've taken 3 nausea pills in the last two days, and they do help... And I noticed I was all flushed in my chest and face yesterday...Tracy my nurse told me that's the decadron (steroids) that I'm on for the next 3 days. Her patients all come back for their shot with rosy cheeks and a red chest. Well...it's kind of like I was in he sun :). But really.... Thank God for the pharmaceutical companies...I can't believe how many prescriptions and drugs one person can be on. It's a little confusing...I even wrote in marker on each pill bottle words like "nausea" and "after chemo" just to keep them all straight. My son Drake has shown serious interest in being a pharmacist or bio-chemical or bio-medical engineer...I could so see him, creating these life-saving drugs in a lab, alleviating someone's side effects... Helping cure cancer... it's unbelievable what science has done for us.
There are three stories that have resonated pretty heartily with me from the Chix Soup book that my friend Karen gave me... One is about a first grade teacher who had a special little boy in her class who wouldn't get his hair cut. His mom was embarrassed, and at parent teacher conferences confided she didn't have the heart to cut it because her son said that he "wouldn't be Daniel without his long hair." A few years later, the teacher got cancer, and had to take a leave off...I'm guessing they didn't have that shot back then to rebuild her immune system...anyway...several years later, Daniel came to visit her. He was leaving the elementary school for high school, and she noticed his short hair. They didn't talk about it, but the teacher ran into Daniel's mom a few days later...long story short, it was his first hair cut, and he donated it to locks of love for children with cancer... And it was his first grade teacher's cancer battle that inspired him to do it. Will I inspire any of my students to do something kind, selfless, even years later? It's awesome to think about...
The second story was a woman whose sister got cancer, and to show her love, she cooked for her, researching the best cancer fighting foods, phytochemicals, like sweet potatoes, fruit, cruciferous veggies, tomatoes, etc, that can all help build a strong immune system ..she invented what she called "chemo Popsicles." Lots of frozen berries, fresh fruit juices, and...get this...tofu...blended in a blender, and frozen in Popsicle tubes. I've asked my mom to make me some.... Actually she got the ingredients yesterday...can't wait to try one and see how they are. According to the author of that story, they soothed her sister's mouth sores and tummy.... She cooked for her sister, stocked her freezer with little microwaveable meals, then flew home. My mother in law told me she was bringing us dinner today, my mom bringing chemo Popsicles later...the love is coming in edible packages, that's for sure.
The most important line, so far, from this book, has been from a woman who when she told her friend she had cancer, her friend replied..."you'll never feel so loved." The woman with cancer was dumbfounded by that response....she said...until the phone calls, cards, packages, visits, and prayers and support started rolling in. That is how I feel... Cared about. Whether it's a card in the mail (I'm keeping every single one), or a personal message on Facebook ( can't believe how many people checked in on me after my first treatment of chemo), or a phone call, or roses (thank you Barbara!), or even just being asked how I'm doing in person, I appreciate it all. Thank you, everyone, for making us feel loved...not just me, but my husband and son. I know people have reached out to Steve and Drake, and they need love and support right now, too. I've said all along since this diagnosis... I'll do anything the doctors ask me to do... And I'll take all the help and support I can get. Thank you.
I had to go for part two of my chemo yesterday (today)? which was a shot called Neulastat (sp?). It's purpose is to help rebuild my white cell count that the chemo from the day before attacked...they don't want you to have a totally depleted immune system, so this is the reason for the shot. Pain level?.. About a 4... Nothing compared to the cortisone injections in my foot...but still...potential to feel flu- like, and achy the next few days. I've taken 3 nausea pills in the last two days, and they do help... And I noticed I was all flushed in my chest and face yesterday...Tracy my nurse told me that's the decadron (steroids) that I'm on for the next 3 days. Her patients all come back for their shot with rosy cheeks and a red chest. Well...it's kind of like I was in he sun :). But really.... Thank God for the pharmaceutical companies...I can't believe how many prescriptions and drugs one person can be on. It's a little confusing...I even wrote in marker on each pill bottle words like "nausea" and "after chemo" just to keep them all straight. My son Drake has shown serious interest in being a pharmacist or bio-chemical or bio-medical engineer...I could so see him, creating these life-saving drugs in a lab, alleviating someone's side effects... Helping cure cancer... it's unbelievable what science has done for us.
There are three stories that have resonated pretty heartily with me from the Chix Soup book that my friend Karen gave me... One is about a first grade teacher who had a special little boy in her class who wouldn't get his hair cut. His mom was embarrassed, and at parent teacher conferences confided she didn't have the heart to cut it because her son said that he "wouldn't be Daniel without his long hair." A few years later, the teacher got cancer, and had to take a leave off...I'm guessing they didn't have that shot back then to rebuild her immune system...anyway...several years later, Daniel came to visit her. He was leaving the elementary school for high school, and she noticed his short hair. They didn't talk about it, but the teacher ran into Daniel's mom a few days later...long story short, it was his first hair cut, and he donated it to locks of love for children with cancer... And it was his first grade teacher's cancer battle that inspired him to do it. Will I inspire any of my students to do something kind, selfless, even years later? It's awesome to think about...
The second story was a woman whose sister got cancer, and to show her love, she cooked for her, researching the best cancer fighting foods, phytochemicals, like sweet potatoes, fruit, cruciferous veggies, tomatoes, etc, that can all help build a strong immune system ..she invented what she called "chemo Popsicles." Lots of frozen berries, fresh fruit juices, and...get this...tofu...blended in a blender, and frozen in Popsicle tubes. I've asked my mom to make me some.... Actually she got the ingredients yesterday...can't wait to try one and see how they are. According to the author of that story, they soothed her sister's mouth sores and tummy.... She cooked for her sister, stocked her freezer with little microwaveable meals, then flew home. My mother in law told me she was bringing us dinner today, my mom bringing chemo Popsicles later...the love is coming in edible packages, that's for sure.
The most important line, so far, from this book, has been from a woman who when she told her friend she had cancer, her friend replied..."you'll never feel so loved." The woman with cancer was dumbfounded by that response....she said...until the phone calls, cards, packages, visits, and prayers and support started rolling in. That is how I feel... Cared about. Whether it's a card in the mail (I'm keeping every single one), or a personal message on Facebook ( can't believe how many people checked in on me after my first treatment of chemo), or a phone call, or roses (thank you Barbara!), or even just being asked how I'm doing in person, I appreciate it all. Thank you, everyone, for making us feel loved...not just me, but my husband and son. I know people have reached out to Steve and Drake, and they need love and support right now, too. I've said all along since this diagnosis... I'll do anything the doctors ask me to do... And I'll take all the help and support I can get. Thank you.
This is actually a continuation of my last post...I had trouble saving it, and the last part got cut off. Maybe it was telling me I wrote too much? ;). Anyway....
Planning has been a blessing for me. Planning for step 2b, which will be the second round of my chemo drugs, which I start after going back to school in September, has been on my mind. They are weekly, and supposedly, easier to manage. I'm in the hardest round, right now. However, I'm told the fatigue kind of gets more pronounced at that time. So I'm trying to make a schedule for back to school- one that's best for me, my kids, and my coworkers. It's only for 12 weeks...up until Thanksgiving. Then I will get to step 3... My surgery. Then, step 4...radiation...hopefully I will be done before spring break. We teachers always say our years aren't dictated by January to December, but by August to June, with marking periods and those wonderful breaks thrown in for good measure. Likewise, this ordeal began for me on my first day of summer vacation, and I'm looking forward to chemo' send by thanksgiving, Christmas vacation, and hopefully, the end of all things in this planned course of attack...spring break. I have my condo booked, and haven't yet purchased the insurance for cancellation...I've gotta have faith that I'll be in Daytona Beach, playing in the ocean and laying in the sun, celebrating my victory.
Planning has been a blessing for me. Planning for step 2b, which will be the second round of my chemo drugs, which I start after going back to school in September, has been on my mind. They are weekly, and supposedly, easier to manage. I'm in the hardest round, right now. However, I'm told the fatigue kind of gets more pronounced at that time. So I'm trying to make a schedule for back to school- one that's best for me, my kids, and my coworkers. It's only for 12 weeks...up until Thanksgiving. Then I will get to step 3... My surgery. Then, step 4...radiation...hopefully I will be done before spring break. We teachers always say our years aren't dictated by January to December, but by August to June, with marking periods and those wonderful breaks thrown in for good measure. Likewise, this ordeal began for me on my first day of summer vacation, and I'm looking forward to chemo' send by thanksgiving, Christmas vacation, and hopefully, the end of all things in this planned course of attack...spring break. I have my condo booked, and haven't yet purchased the insurance for cancellation...I've gotta have faith that I'll be in Daytona Beach, playing in the ocean and laying in the sun, celebrating my victory.
Today I entered step 2 of sending this cancer on its way out of my body...permanently. I had my first chemotherapy treatment.
I've thought about it, and have divided step one into various stages. Step 1a was recognizing there was a problem. Step 1b...calling the doctor and having the various medical appointments, like a mammogram, physical exam, biopsy, etc. to detect the problem. Step 1c...getting the actual diagnosis...my problem now had a name...Invasive Ductal Carcinoma, triple negative. Step 1d was forging a plan of attack, from my surgeon and oncology team. They made me a partner in my treatment, including choice of order of attack. Step 1e was was preparing for the attack with surgery, including lymph node removal, and port placement. Step 1f was additional testing... A ct scan, blood work, and including a bone scan that I will have on Thursday. Step 1g has been ongoing...the healing... physically from the surgery, and the ACCEPTANCE emotionally of all the previous steps, a through g. I feel that right now, at 4:00 in the morning after my first round of chemotherapy, that I'm in a better place than I was in steps 1a-1f.
The night before, I packed my bag to go to my first chemo visit. A red patterned 31 bag my mom gave me, with lots of little pockets. Magazines, books, check, check. Water, diet Pepsi? Check, check. IPad, turquoise blanket my mother in law Florence gave me, made by women at Queen's, her church? Check, check. Even a book from my friend Karen, "Chicken Soup for the Breast Cancer Survivor's Soul", and "Jesus Calling," a book from my friend Janie (and her husband wanted me to be sure it wasn't Jesus "calling me home"). Gotta love that. Check. Check. And last, but not least, a piece of pink camo ribbon, that came on my "sunshine basket" from my friends at work, tied to the handle..."for the fight," Sabrena had told me....that felt just right. I was ready.
Now...what does one wear to a chemo appointment. "Steve, when we toured the infusion room, were those people wearing gowns, or regular clothing?" "Regular clothes," my hubby said. Hmmm...I'm not a person who goes out in public in jammy pants, but that sounded comfortable for a five hour visit in a recliner. What kind of shirt? I was clueless. Ended up wearing a regular old "kim" outfit...Capri jeans and a scoop neck shirt. Perfect! As the shirt only had to be pulled aside a little bit for port access.
Chemo, I was told, would be 5 hours long my first round, so Steve and my mom had broken it into shifts...Steve would get me there at 9:50, stay with me for the first part of my treatment, and my mom would get there at 12:30 , watch the "Young and the Restless" with me, and take me home when those five hours were up, around 3:00. So I was very surprised when I was told I would be done about 12:45-1:00. "Don't I have to be here, for my first visit, for five hours? Stay a few hours to make sure I don't have any reactions? They double-checked twice, and no, I didn't. Better call my mom, or she'll miss the whole thing!
The first hour was all about the pre-chemo...they accessed my port for the first time, that hard little disc implanted in my right chest. Steve looked out the window...couldn't watch...and I couldn't look away. Basically, a needle stick, more painful than a traditional IV, but not intolerable, then it was over. Added a line. Got a good blood flow, which meant it was working. Hallelujiah! No clue there could even be a problem...which would have meant "fiddling" with it, or worst case scenario, it could be broken, and need to be surgically fixed. Good news...it worked right away! A saline flush. Drew two vials of blood. Then Sent me to the infusion room, with a dangling IV from my chest
It seems the infusion room, the large space where chemotherapy is administered, has been operating at full capacity for a while now, so my regular assigned seat was taken, so it took a minute to get me a chair. I got seated, situated, then about five minutes later they told me I was going to be moved. For my first time, they wanted me near the nurse's station. Ok, no big deal. Even though I had a primo view of that waterfall, and every tv around me seemed to have on the "Price is Right." I don't know why, but I love that game show, and I've watched it regularly since college, when I would pedal my bike back to my apartment, eat lunch between classes, and turn it on with my roommate Donna. Every school vacation or if I'm home sick, I watch it. Somehow, it's comforting to me...so it was a normal, almost welcome sound, full of good memories in my life, in an abnormal, non-comforting environment, and somehow felt right to me hearing that background voice of "Come On Down!!!" while getting my first cancer treatment. Sound crazy?
Well, my mom got there about noon, Steve left shortly after, and my mom got to watch the administering of my first actual chemo drug. Steve was there for my first round of meds, that went directly through the line in my port. I didn't feel a thing, just chatted with the nurses and volunteers that came through. The first volunteer had snacks and drinks..."You're So Young!" She blurted out to me. Ok. I'll have an iced tea and some animal crackers please. My husband wanted a coffee. What do you say to that? Is there a proper response? I'm still wondering what that response would be. I'm 45 years old, middle-aged, but probably not what the majority of her snack customers look like. Oh well, cancer can happen to anyone...food for thought, I guess.
Anyway, the first round is several Iv's for anti-nausea, saline solution, and decadron, a steroid, that I will also be ingesting orally over the next two days, and basically getting prepped for my two-drug , bi-weekly cocktail, to come. My nurse, I hate to say it, was my clone on a better day. I immediately loved her...super tan, long blonde hair, 43, former softball player who now coached her daughter's softball team, and rocking some neon pink and yellow scrubs. Super friendly, she told me I could indeed do the mystic tan spray tanning during my treatment, and she "got it." She told me how for 21 years shed been an RN, 18 in oncology, and how chemotherapy wasn't the same as it was when she started...not even the same as five years ago! The biggest change is how they are able to combat the many side effects more effectively. Like that hour of nothing but drugs to combat the effects of what was being hand pushed into me by her, now completely adorned in a blue suit covering, plastic face shield, and sterile gloves. For any kind of spray. It is highly toxic. It's a poison. "It's killing your cancer," she said to me, more than once, and reiterated it to my mother, who looked a little shell-shocked at Tracy's new attire for this portion of my visit. Two vials, hand injected over about ten minutes, then two hanging bags of drug #2. During the last ten minutes of the last chemo drug, my head and face started getting tight. Like a major sinus cold coming on...I had a big sneeze, and a little of the pressure was relieved, but it was still there. Wow! Is this normal? I asked my other nurse. Yes, it is, but we want you to stay here until it subsides. About 10 minutes after my IV was removed, I felt pretty normal. We walked out, decided we were both starving, and went to get some lunch.
We got sub sandwiches, and I walked around the new Vermeulen's, waiting for my sandwich. Went home and ate. Looked through my instructions and cancer 101 folder. Tried on all my wigs and hats for my mom. She tried some on. We laughed, and decided to go to the crossing, I needed more wig stands. A new pillow, maybe a silk or satin pillowcase, as Tracy told me that can help you keep your hair "a little bit longer," and a cute butterfly barrette for one of my wigs. Set up my wigs, and trying to figure out what to do with them...I think my dining room table is not the best place, but for now, it'll have to do until I organize a spot in my closet...luckily, Henry, my cat, hadn't noticed them yet :)
It was a pretty normal night. I really felt fine, maybe a little tired about 7:00, but I figured pretty normal, after all I'd been through that day. And I was right...I felt better AFTER my visit than I did before...the unknown is what gnaws at you, eats away your spirit, casts doubt on little pieces of your life...knowing is better than not knowing. For me, anyway. But.....
I would tell anyone who thinks they might have a "problem," to get to the doctor immediately and get checked out. More than likely, it's nothing. But if it's something, I still feel that knowing is a lot better than burying your head in the sand and hoping the symptoms will "just go away." A lot of time, time is of the essence...who knows if I had just waited until "later," if I would still be at stage 2? It's really been a blessing that I've been on summer vacation, and had the time to rest, think, and plan.
I've thought about it, and have divided step one into various stages. Step 1a was recognizing there was a problem. Step 1b...calling the doctor and having the various medical appointments, like a mammogram, physical exam, biopsy, etc. to detect the problem. Step 1c...getting the actual diagnosis...my problem now had a name...Invasive Ductal Carcinoma, triple negative. Step 1d was forging a plan of attack, from my surgeon and oncology team. They made me a partner in my treatment, including choice of order of attack. Step 1e was was preparing for the attack with surgery, including lymph node removal, and port placement. Step 1f was additional testing... A ct scan, blood work, and including a bone scan that I will have on Thursday. Step 1g has been ongoing...the healing... physically from the surgery, and the ACCEPTANCE emotionally of all the previous steps, a through g. I feel that right now, at 4:00 in the morning after my first round of chemotherapy, that I'm in a better place than I was in steps 1a-1f.
The night before, I packed my bag to go to my first chemo visit. A red patterned 31 bag my mom gave me, with lots of little pockets. Magazines, books, check, check. Water, diet Pepsi? Check, check. IPad, turquoise blanket my mother in law Florence gave me, made by women at Queen's, her church? Check, check. Even a book from my friend Karen, "Chicken Soup for the Breast Cancer Survivor's Soul", and "Jesus Calling," a book from my friend Janie (and her husband wanted me to be sure it wasn't Jesus "calling me home"). Gotta love that. Check. Check. And last, but not least, a piece of pink camo ribbon, that came on my "sunshine basket" from my friends at work, tied to the handle..."for the fight," Sabrena had told me....that felt just right. I was ready.
Now...what does one wear to a chemo appointment. "Steve, when we toured the infusion room, were those people wearing gowns, or regular clothing?" "Regular clothes," my hubby said. Hmmm...I'm not a person who goes out in public in jammy pants, but that sounded comfortable for a five hour visit in a recliner. What kind of shirt? I was clueless. Ended up wearing a regular old "kim" outfit...Capri jeans and a scoop neck shirt. Perfect! As the shirt only had to be pulled aside a little bit for port access.
Chemo, I was told, would be 5 hours long my first round, so Steve and my mom had broken it into shifts...Steve would get me there at 9:50, stay with me for the first part of my treatment, and my mom would get there at 12:30 , watch the "Young and the Restless" with me, and take me home when those five hours were up, around 3:00. So I was very surprised when I was told I would be done about 12:45-1:00. "Don't I have to be here, for my first visit, for five hours? Stay a few hours to make sure I don't have any reactions? They double-checked twice, and no, I didn't. Better call my mom, or she'll miss the whole thing!
The first hour was all about the pre-chemo...they accessed my port for the first time, that hard little disc implanted in my right chest. Steve looked out the window...couldn't watch...and I couldn't look away. Basically, a needle stick, more painful than a traditional IV, but not intolerable, then it was over. Added a line. Got a good blood flow, which meant it was working. Hallelujiah! No clue there could even be a problem...which would have meant "fiddling" with it, or worst case scenario, it could be broken, and need to be surgically fixed. Good news...it worked right away! A saline flush. Drew two vials of blood. Then Sent me to the infusion room, with a dangling IV from my chest
It seems the infusion room, the large space where chemotherapy is administered, has been operating at full capacity for a while now, so my regular assigned seat was taken, so it took a minute to get me a chair. I got seated, situated, then about five minutes later they told me I was going to be moved. For my first time, they wanted me near the nurse's station. Ok, no big deal. Even though I had a primo view of that waterfall, and every tv around me seemed to have on the "Price is Right." I don't know why, but I love that game show, and I've watched it regularly since college, when I would pedal my bike back to my apartment, eat lunch between classes, and turn it on with my roommate Donna. Every school vacation or if I'm home sick, I watch it. Somehow, it's comforting to me...so it was a normal, almost welcome sound, full of good memories in my life, in an abnormal, non-comforting environment, and somehow felt right to me hearing that background voice of "Come On Down!!!" while getting my first cancer treatment. Sound crazy?
Well, my mom got there about noon, Steve left shortly after, and my mom got to watch the administering of my first actual chemo drug. Steve was there for my first round of meds, that went directly through the line in my port. I didn't feel a thing, just chatted with the nurses and volunteers that came through. The first volunteer had snacks and drinks..."You're So Young!" She blurted out to me. Ok. I'll have an iced tea and some animal crackers please. My husband wanted a coffee. What do you say to that? Is there a proper response? I'm still wondering what that response would be. I'm 45 years old, middle-aged, but probably not what the majority of her snack customers look like. Oh well, cancer can happen to anyone...food for thought, I guess.
Anyway, the first round is several Iv's for anti-nausea, saline solution, and decadron, a steroid, that I will also be ingesting orally over the next two days, and basically getting prepped for my two-drug , bi-weekly cocktail, to come. My nurse, I hate to say it, was my clone on a better day. I immediately loved her...super tan, long blonde hair, 43, former softball player who now coached her daughter's softball team, and rocking some neon pink and yellow scrubs. Super friendly, she told me I could indeed do the mystic tan spray tanning during my treatment, and she "got it." She told me how for 21 years shed been an RN, 18 in oncology, and how chemotherapy wasn't the same as it was when she started...not even the same as five years ago! The biggest change is how they are able to combat the many side effects more effectively. Like that hour of nothing but drugs to combat the effects of what was being hand pushed into me by her, now completely adorned in a blue suit covering, plastic face shield, and sterile gloves. For any kind of spray. It is highly toxic. It's a poison. "It's killing your cancer," she said to me, more than once, and reiterated it to my mother, who looked a little shell-shocked at Tracy's new attire for this portion of my visit. Two vials, hand injected over about ten minutes, then two hanging bags of drug #2. During the last ten minutes of the last chemo drug, my head and face started getting tight. Like a major sinus cold coming on...I had a big sneeze, and a little of the pressure was relieved, but it was still there. Wow! Is this normal? I asked my other nurse. Yes, it is, but we want you to stay here until it subsides. About 10 minutes after my IV was removed, I felt pretty normal. We walked out, decided we were both starving, and went to get some lunch.
We got sub sandwiches, and I walked around the new Vermeulen's, waiting for my sandwich. Went home and ate. Looked through my instructions and cancer 101 folder. Tried on all my wigs and hats for my mom. She tried some on. We laughed, and decided to go to the crossing, I needed more wig stands. A new pillow, maybe a silk or satin pillowcase, as Tracy told me that can help you keep your hair "a little bit longer," and a cute butterfly barrette for one of my wigs. Set up my wigs, and trying to figure out what to do with them...I think my dining room table is not the best place, but for now, it'll have to do until I organize a spot in my closet...luckily, Henry, my cat, hadn't noticed them yet :)
It was a pretty normal night. I really felt fine, maybe a little tired about 7:00, but I figured pretty normal, after all I'd been through that day. And I was right...I felt better AFTER my visit than I did before...the unknown is what gnaws at you, eats away your spirit, casts doubt on little pieces of your life...knowing is better than not knowing. For me, anyway. But.....
I would tell anyone who thinks they might have a "problem," to get to the doctor immediately and get checked out. More than likely, it's nothing. But if it's something, I still feel that knowing is a lot better than burying your head in the sand and hoping the symptoms will "just go away." A lot of time, time is of the essence...who knows if I had just waited until "later," if I would still be at stage 2? It's really been a blessing that I've been on summer vacation, and had the time to rest, think, and plan.
Friday, July 11, 2014
Today I'm writing about my hair. I think most cancer patients will agree that the loss of their hair is a pretty bitter pill to swallow. I found a blog of a young woman, early thirties, with a new-born baby, battling cancer. I think her blog was called "mommybeatingcancer," or something similar. She posted pictures of her hair regrowth every month, and it was an awesome site...really gave me hope that this loss is only temporary, that "this too shall pass." But until I have my hair back, the way I want it, I'm going to plan for the storm and be like that ever-ready boyscout...always prepared...
And this really has been a pretty good last couple of days. Yesterday Drake had a baseball game in Lansing, and I learned that it was exactly one block from an amazing wig shop that everyone says is just the best in helping chemo patients get ready for hair loss. I called my insurance company, learned that wigs (excuse me...cranial prosthesis. :) are indeed covered, and I am allowed two wigs in a 12 month period, and they will reimburse me if I buy it at a non-participating shop. When I learned that I can not only get one wig, but two, and the dollar amount was incredibly more than I originally thought, I was pretty excited. (Well, as excited as anyone can get shopping for fake hair). If anyone is interested, the shop is called Elegance Studio, and their web site is amazing. They claim to have over 1500 wigs...in stock....I called, made my appointment, and went there ready to spend some money.
Anyone who knows me knows I'm kind of weird about my hair...I often cut it myself, highlight it in my bathroom, get it cut professionally about once a year, and couldn't imagine spending big bucks regularly at the salon...but still, I love my hair. And I am not lying when I say I am often told that I have pretty hair. In fact, today I was in line to get a new card at Soaring Eagle, and the lady smiled at me, and told me how pretty my hair looked. It's an incredible compliment, but a shot to the gut, all at the same time. I just said "thank you." At least I didn't burst into tears like I did in Kohl's when a woman told me the same thing about 3 weeks ago, and I had to leave the store. I think I've definitely made progress in coming to terms with this impending, inevitable loss.
Anyway, I know I already have two wigs...the one I bought in town, and the one my girlfriend gave me, and they are both very nice. I'm sure I will have TEN wigs before this ordeal is over, and while I like them both, and will definitely wear them, I like the idea of being fitted and treated by a professional.
Pamela, the owner of the shop, had me wait while she set up, in an area that looked like a beauty shop. She played with my own hair, learned about me, and asked questions about my personality. She devised that I am a "girly-girl" who likes wearing makeup and doing my hair. She pulled my hair into a cap, and brought out a longish blonde wig, and put it on my head. I learned that I have a "standard-sized" head....(she couldn't say that about my size 10 feet, but that's beside the point...) anyway, she started playing with it, moving the part around, plumping the top, etc. As she was doing this, she was telling me about the different kind of wigs. Hand tied...where each strand is tied into the cap, machine-woven (equals hot! Not good for someone who's been told she will go right into moenopause with the chemo!) mono-filament (which means you can move the part around), lace-front, synthetic, and real, human hair. I tried on several wigs...a woman who was training in the salon would nod approval, or kind of shake her head at me behind her bosses' head , and I really didn't like anything that was short, or too bleachy- blonde, or too curly. She brought them to me, and I tried them on. I tried on anything she brought me, but I told her I really wanted to try a human hair wig...I know they are the most expensive, but also, the most realistic, for obvious reasons. She put one on me, and I was sold! It was dark, but styled kind of similar to my natural hair. I really loved it.
I took two pictures, "selfies," of myself, and sent them to my mom by text. Of the blonde one, my dad asked, "Is Kim wearing a wig?"
Want to hear the irony? I ended up getting the very first wig she tried on me, and the brunette one, made of real human hair. I also bought a baseball hat with long hair attached to it, and a little cap to wear....whenever you want a break from a wig, I guess. She mentioned how your head can get cold...wow! Never even thought of that, and all sorts of accessories necessary to maintain your stable of hairpieces...
Being prepared feels good. And I even made my son's baseball game, and watched him make a stunning, running, over-the-shoulder catch in left field that ended the game with a win...I was so proud of him. And I want him to never be embarrassed of me, of the way I look...even though I'm going to be sick, I still want to feel beautiful... I wonder if anyone will tell me how pretty my hair is when I'm wearing one of my wigs???
And this really has been a pretty good last couple of days. Yesterday Drake had a baseball game in Lansing, and I learned that it was exactly one block from an amazing wig shop that everyone says is just the best in helping chemo patients get ready for hair loss. I called my insurance company, learned that wigs (excuse me...cranial prosthesis. :) are indeed covered, and I am allowed two wigs in a 12 month period, and they will reimburse me if I buy it at a non-participating shop. When I learned that I can not only get one wig, but two, and the dollar amount was incredibly more than I originally thought, I was pretty excited. (Well, as excited as anyone can get shopping for fake hair). If anyone is interested, the shop is called Elegance Studio, and their web site is amazing. They claim to have over 1500 wigs...in stock....I called, made my appointment, and went there ready to spend some money.
Anyone who knows me knows I'm kind of weird about my hair...I often cut it myself, highlight it in my bathroom, get it cut professionally about once a year, and couldn't imagine spending big bucks regularly at the salon...but still, I love my hair. And I am not lying when I say I am often told that I have pretty hair. In fact, today I was in line to get a new card at Soaring Eagle, and the lady smiled at me, and told me how pretty my hair looked. It's an incredible compliment, but a shot to the gut, all at the same time. I just said "thank you." At least I didn't burst into tears like I did in Kohl's when a woman told me the same thing about 3 weeks ago, and I had to leave the store. I think I've definitely made progress in coming to terms with this impending, inevitable loss.
Anyway, I know I already have two wigs...the one I bought in town, and the one my girlfriend gave me, and they are both very nice. I'm sure I will have TEN wigs before this ordeal is over, and while I like them both, and will definitely wear them, I like the idea of being fitted and treated by a professional.
Pamela, the owner of the shop, had me wait while she set up, in an area that looked like a beauty shop. She played with my own hair, learned about me, and asked questions about my personality. She devised that I am a "girly-girl" who likes wearing makeup and doing my hair. She pulled my hair into a cap, and brought out a longish blonde wig, and put it on my head. I learned that I have a "standard-sized" head....(she couldn't say that about my size 10 feet, but that's beside the point...) anyway, she started playing with it, moving the part around, plumping the top, etc. As she was doing this, she was telling me about the different kind of wigs. Hand tied...where each strand is tied into the cap, machine-woven (equals hot! Not good for someone who's been told she will go right into moenopause with the chemo!) mono-filament (which means you can move the part around), lace-front, synthetic, and real, human hair. I tried on several wigs...a woman who was training in the salon would nod approval, or kind of shake her head at me behind her bosses' head , and I really didn't like anything that was short, or too bleachy- blonde, or too curly. She brought them to me, and I tried them on. I tried on anything she brought me, but I told her I really wanted to try a human hair wig...I know they are the most expensive, but also, the most realistic, for obvious reasons. She put one on me, and I was sold! It was dark, but styled kind of similar to my natural hair. I really loved it.
I took two pictures, "selfies," of myself, and sent them to my mom by text. Of the blonde one, my dad asked, "Is Kim wearing a wig?"
Want to hear the irony? I ended up getting the very first wig she tried on me, and the brunette one, made of real human hair. I also bought a baseball hat with long hair attached to it, and a little cap to wear....whenever you want a break from a wig, I guess. She mentioned how your head can get cold...wow! Never even thought of that, and all sorts of accessories necessary to maintain your stable of hairpieces...
Being prepared feels good. And I even made my son's baseball game, and watched him make a stunning, running, over-the-shoulder catch in left field that ended the game with a win...I was so proud of him. And I want him to never be embarrassed of me, of the way I look...even though I'm going to be sick, I still want to feel beautiful... I wonder if anyone will tell me how pretty my hair is when I'm wearing one of my wigs???
Wednesday, July 9, 2014
This week it's almost like there was too much going on in my head, that I couldn't sit down and write. The phone calls from my doctors, with the news that 3 of 5 taken lymph nodes were positive for cancer. Yesterday, I had the first test to determine if it has gone anywhere else in my body. A CT scan.
But first, at 12:45, I had to report to the heart center at the hospital for my EKG reading. They put in an IV, to insert some sort of dye to give an even clearer picture. They knew I was going straight to Imaging for the CT scan, so made sure I had the right IV for that procedure as well...I trooped off to my next procedure, at 2:00, with an IV dangling from my hand.
I didn't know that I would have to drink this foul, obnoxious drink...1 and 1/2 bottles, to be exact. Like a really bad, generic slim fast with a chalky after-taste. I had a migraine coming on, and got permission during my EKG to swallow a migraine pill...so, slightly nauseous, I was told I had to get through the drinks in 20-25 minutes, because it had to sit inside you for about 40 minutes before the scan. The tech even drew a line at the half-way mark of the second bottle. "OK," I told myself. "Just one and a half bottles. You can do this." And I did. I learned if I plugged my nose, and swallowed twice before unplugging it, I only half felt like I was gonna hurl. And I did it! One and a half bottles, at the 25 minute deadline.
When my tech came to get me, she led me to the CT room, where I was given back my half empty bottle. "Ok," she said to me. "Now you've got to finish the rest of this." What the hell???? "That's not gonna happen," I told her. "I drank what she told me to. I planned it in my head. If I had been TOLD that I had to drink all of it, I maybe could have planned my thoughts around that. I'm gonna be sick. I almost threw up several times just getting that down. Not gonna happen!"
She just looked at me, and asked me to try to drink what I could. I was PISSED, I don't know how else to explain it. I've gone through this entire cancer thing, since my first initial visit with my doctor, wondering if something was wrong, to learning I have breast cancer, to the knowledge I'm having chemo and going to lose my hair, to hearing only a few days ago that this shit is in my LYMPH and now may be somewhere else, and not once have I been ANGRY! But this damn drink? That seems so UNFAIR!!! If they had only told me I had to drink the whole thing!!!! Then I could have planned for it!!!! Maybe Sharon, my breast cancer patient navigator was right. We learn to control what we can, and even take comfort in, the things we can control. This silly little thing...why did it make me so mad?
So, I choked down about 3 gulps, gagged, and got on the table. Got my pictures. And then apologized to the gracious technician for my yelling about the drink while she was leading me back to my husband. But still...am I wrong to think, that if I had been forewarned about "drinking the rest when you get back there..." That I may have behaved better, and not been so stressed. It seems like such a minor thing. But I think cancer patients....ok, me....will act and feel better if I know what to expect. Like my hair. I KNOW it's going to come out. I've even been given a graphic picture of how it happens, not all at once, but strands on the pillow, pulled out in the brush, clumps in your hand, bald patches on your skull...isn't that better, knowing ahead of time, instead of just waking up one morning and being blindsided??? Like, WHAT THE HELL IS ON MY PILLOW??? Why did that happen? See, I've been mentally preparing for that day for a month. Like the day I went wig shopping....I took control. And this week, when I put both wigs on, and tried to "style" them....and put on my yellow bandana from my "sunshine" basket from my friends at work, and wore that around the house for a while. It's all in the mental preparation. I CAN DO THIS. Like my chemo informational visit today, that I'm getting ready to go to. It's all about being prepared, getting the knowledge, and putting myself in a certain mind-frame to cope. It's also about one day at a time. Getting through one "thing" at a time. And that's about all I can do right now.
Just don't ask me to swallow more than I felt I was promised. :)
But first, at 12:45, I had to report to the heart center at the hospital for my EKG reading. They put in an IV, to insert some sort of dye to give an even clearer picture. They knew I was going straight to Imaging for the CT scan, so made sure I had the right IV for that procedure as well...I trooped off to my next procedure, at 2:00, with an IV dangling from my hand.
I didn't know that I would have to drink this foul, obnoxious drink...1 and 1/2 bottles, to be exact. Like a really bad, generic slim fast with a chalky after-taste. I had a migraine coming on, and got permission during my EKG to swallow a migraine pill...so, slightly nauseous, I was told I had to get through the drinks in 20-25 minutes, because it had to sit inside you for about 40 minutes before the scan. The tech even drew a line at the half-way mark of the second bottle. "OK," I told myself. "Just one and a half bottles. You can do this." And I did. I learned if I plugged my nose, and swallowed twice before unplugging it, I only half felt like I was gonna hurl. And I did it! One and a half bottles, at the 25 minute deadline.
When my tech came to get me, she led me to the CT room, where I was given back my half empty bottle. "Ok," she said to me. "Now you've got to finish the rest of this." What the hell???? "That's not gonna happen," I told her. "I drank what she told me to. I planned it in my head. If I had been TOLD that I had to drink all of it, I maybe could have planned my thoughts around that. I'm gonna be sick. I almost threw up several times just getting that down. Not gonna happen!"
She just looked at me, and asked me to try to drink what I could. I was PISSED, I don't know how else to explain it. I've gone through this entire cancer thing, since my first initial visit with my doctor, wondering if something was wrong, to learning I have breast cancer, to the knowledge I'm having chemo and going to lose my hair, to hearing only a few days ago that this shit is in my LYMPH and now may be somewhere else, and not once have I been ANGRY! But this damn drink? That seems so UNFAIR!!! If they had only told me I had to drink the whole thing!!!! Then I could have planned for it!!!! Maybe Sharon, my breast cancer patient navigator was right. We learn to control what we can, and even take comfort in, the things we can control. This silly little thing...why did it make me so mad?
So, I choked down about 3 gulps, gagged, and got on the table. Got my pictures. And then apologized to the gracious technician for my yelling about the drink while she was leading me back to my husband. But still...am I wrong to think, that if I had been forewarned about "drinking the rest when you get back there..." That I may have behaved better, and not been so stressed. It seems like such a minor thing. But I think cancer patients....ok, me....will act and feel better if I know what to expect. Like my hair. I KNOW it's going to come out. I've even been given a graphic picture of how it happens, not all at once, but strands on the pillow, pulled out in the brush, clumps in your hand, bald patches on your skull...isn't that better, knowing ahead of time, instead of just waking up one morning and being blindsided??? Like, WHAT THE HELL IS ON MY PILLOW??? Why did that happen? See, I've been mentally preparing for that day for a month. Like the day I went wig shopping....I took control. And this week, when I put both wigs on, and tried to "style" them....and put on my yellow bandana from my "sunshine" basket from my friends at work, and wore that around the house for a while. It's all in the mental preparation. I CAN DO THIS. Like my chemo informational visit today, that I'm getting ready to go to. It's all about being prepared, getting the knowledge, and putting myself in a certain mind-frame to cope. It's also about one day at a time. Getting through one "thing" at a time. And that's about all I can do right now.
Just don't ask me to swallow more than I felt I was promised. :)
Friday, July 4, 2014
Yesterday was very dark. I don't mean there was no sunshine, because actually, the weather was totally gorgeous, a picture-perfect summer day. I mean, it was dark in my head.
I got a call in the morning from Dr. Frantzis, my surgeon, to let me know the pathology report from my surgery on Monday. Apparently, he removed five lymph nodes, and three of those nodes tested positive for cancer. I guess that also means that two of those nodes were cancer-free, but that isn't what I heard. It's what I expected, but still, getting the news from my doctor's mouth...not his nurse, not an office worker, but the doctor himself, weighted those words even more significantly. He let me know that now the oncologist would be running additional tests, like a bone scan and a CT scan, but still, this changes nothing with my treatment...and he was glad I chose to do chemo first. He also said he thought I was still at stage 2...
I swear, less than a half hour later, the phone rang again, with "Allegiance" showing up in the caller ID once again. This time, it was Dr.. Hazzi, my oncologist. He wanted me to know he had my full pathology report, and wanted me to get scheduled with the bone scan and CT scan. He reiterated Dr. Frantzis, in that this changed nothing with my treatment. A few minutes later, one of the girls from his office called to schedule those additional procedures. It took a few back and forth calls to get the times right...so on Tuesday, after my echo cardio gram, I go straight to another part of the hospital to get my CT scan. On Wed. I go for my chemotherapy info visit. On Thurs. the 17th, two days after my first chemo treatment, at 8:45 in the morning I get some sort of injection, leave, and come back a few hours later for a bone scan. Honestly, it's a great thing I'm on "vacation" because I don't know when I'd find the time to work.
Like I said, I was in a dark place. I tried sitting in the sunshine, but all I wanted to do was lay down and watch tv, which I alternated with little naps. Then the bouquet of flowers came from my sister in law...so beautiful. Then the package in the mail came from my friend Lisa...a little bear with the pink ribbon on it, to find the cure...and some self tanner....people know I like my glow...and a card from my cousin's wife with an encouraging greeting...by this time, I was back in the sun, trying to snap out of my funk. Still sore from my surgery, kinda foggy, and depressed, I talked Steve into going for a ride with me. Maybe getting out of the house, in a car (hadn't been out since Monday) with the windows down would cheer me up? Not so much. I went back to bed, where I tossed and turned most of the night.
This morning I feel a little bit better. I do realize how well I've taken all this news, from the very beginning, with only a few incidents of crying and self-pity. I'm trying to be better than that, I guess, whatever that means. Cancer happens to people every day, and I'm not special, though people constantly tell me they feel bad it's happened to me because I'm such a "good person." Whatever that means. I asked someone, why do you think I'm such a good person? And they said, "you're not a murderer or a drug dealer getting little kids hooked on drugs. They should be the ones getting cancer." That is true. I've never killed anyone or sold or taken drugs.....but still...there are a lot of people out there who get cancer every day...and I've got a fighting chance. Imagine the people who are diagnosed with a disease for which there is NO CURE...a few years ago I was having some really weird side effects from my migraine medication, and I was being tested for MS...a different migraine pill took care of those symptoms, but still, that was scary...and a few years before that I was tested for something called pulmonary Hypertension...the only cure for that is a full lung/heart transplant...so glad I was suffering from anxiety, and needed some Xanax...either of those two diagnoses would have been more devastating and life changing than breast cancer...hopefully this will be a really ugly, sad, and hard chapter of my life, no matter what those additional tests may find, but only a chapter...not the rest of the book.
I got a call in the morning from Dr. Frantzis, my surgeon, to let me know the pathology report from my surgery on Monday. Apparently, he removed five lymph nodes, and three of those nodes tested positive for cancer. I guess that also means that two of those nodes were cancer-free, but that isn't what I heard. It's what I expected, but still, getting the news from my doctor's mouth...not his nurse, not an office worker, but the doctor himself, weighted those words even more significantly. He let me know that now the oncologist would be running additional tests, like a bone scan and a CT scan, but still, this changes nothing with my treatment...and he was glad I chose to do chemo first. He also said he thought I was still at stage 2...
I swear, less than a half hour later, the phone rang again, with "Allegiance" showing up in the caller ID once again. This time, it was Dr.. Hazzi, my oncologist. He wanted me to know he had my full pathology report, and wanted me to get scheduled with the bone scan and CT scan. He reiterated Dr. Frantzis, in that this changed nothing with my treatment. A few minutes later, one of the girls from his office called to schedule those additional procedures. It took a few back and forth calls to get the times right...so on Tuesday, after my echo cardio gram, I go straight to another part of the hospital to get my CT scan. On Wed. I go for my chemotherapy info visit. On Thurs. the 17th, two days after my first chemo treatment, at 8:45 in the morning I get some sort of injection, leave, and come back a few hours later for a bone scan. Honestly, it's a great thing I'm on "vacation" because I don't know when I'd find the time to work.
Like I said, I was in a dark place. I tried sitting in the sunshine, but all I wanted to do was lay down and watch tv, which I alternated with little naps. Then the bouquet of flowers came from my sister in law...so beautiful. Then the package in the mail came from my friend Lisa...a little bear with the pink ribbon on it, to find the cure...and some self tanner....people know I like my glow...and a card from my cousin's wife with an encouraging greeting...by this time, I was back in the sun, trying to snap out of my funk. Still sore from my surgery, kinda foggy, and depressed, I talked Steve into going for a ride with me. Maybe getting out of the house, in a car (hadn't been out since Monday) with the windows down would cheer me up? Not so much. I went back to bed, where I tossed and turned most of the night.
This morning I feel a little bit better. I do realize how well I've taken all this news, from the very beginning, with only a few incidents of crying and self-pity. I'm trying to be better than that, I guess, whatever that means. Cancer happens to people every day, and I'm not special, though people constantly tell me they feel bad it's happened to me because I'm such a "good person." Whatever that means. I asked someone, why do you think I'm such a good person? And they said, "you're not a murderer or a drug dealer getting little kids hooked on drugs. They should be the ones getting cancer." That is true. I've never killed anyone or sold or taken drugs.....but still...there are a lot of people out there who get cancer every day...and I've got a fighting chance. Imagine the people who are diagnosed with a disease for which there is NO CURE...a few years ago I was having some really weird side effects from my migraine medication, and I was being tested for MS...a different migraine pill took care of those symptoms, but still, that was scary...and a few years before that I was tested for something called pulmonary Hypertension...the only cure for that is a full lung/heart transplant...so glad I was suffering from anxiety, and needed some Xanax...either of those two diagnoses would have been more devastating and life changing than breast cancer...hopefully this will be a really ugly, sad, and hard chapter of my life, no matter what those additional tests may find, but only a chapter...not the rest of the book.
Wednesday, July 2, 2014
Today I was pretty surprised at how tired and sore I still was from my surgery on Monday...I think it might be some lingering effects from the anesthesia. I took a shower this morning, and that small thing nearly wiped me out. Also, I have very little range of motion in my right arm, and struggled with the simple task of washing my hair, and then drying off my body. I knew I couldn't handle my blow dryer, so my husband Steve dried my hair for me.
A friend and co-worker came by with the most thoughtful gift...every person I work with either donated, or shopped, for something yellow to "bring a little sunshine into my life." A beautiful gift basket filled with towels, candy, lottery tickets, note cards...even a yellow bandana that I'm sure I will be able to wear shortly. Thank you so much to Denise, Esther, Janie, Jim, Joy, Karen, Paul, and Sabrena, who delivered the gift to my doorstep. It meant so much to me, you have no idea.
I also got a card in the mail and phone call from a friend of mine who teaches in the district, and a phone call from my sister-in-law. A visit from my mom and dad in the evening pretty much summed up my day, still recovering from a surgical procedure two days ago. I hope tomorrow I feel more like myself...but truthfully, every time I feel that hard circular port inserted under my skin on my chest, it feels like something Agent Scully from the X-Files might have had in the back of her neck...both alien, other worldly, and yet, life-changing. While Scully was an alien abductee, I'm one of those left behind...my medical experiments won't be conducted on a spaceship, but on the third floor af the Allegiance Professional Building in less than two weeks. Unlike Agent Scully, who was convinced her experiments were hurting her, I have to believe my procedures are being done to help me.
Someone asked me if I've gotten any statistics...and I know what they mean, what is my percentage of beating this and surviving? Truthfully, I haven't been given any such thing. I haven't even been given the stage of my cancer. Maybe I don't want to know. Would it change the fact of me going through treatment if my percentage of survival was below 50%? Below 30%? A slim chance? I don't think it would. I think as a "warrior," you have to be willing to fight, no matter what the odds. That's probably why I love the casino so much, I'm not afraid to gamble. And my mantra has always been, "Go big, or go home." This is probably the most important bet I've ever made....
A friend and co-worker came by with the most thoughtful gift...every person I work with either donated, or shopped, for something yellow to "bring a little sunshine into my life." A beautiful gift basket filled with towels, candy, lottery tickets, note cards...even a yellow bandana that I'm sure I will be able to wear shortly. Thank you so much to Denise, Esther, Janie, Jim, Joy, Karen, Paul, and Sabrena, who delivered the gift to my doorstep. It meant so much to me, you have no idea.
I also got a card in the mail and phone call from a friend of mine who teaches in the district, and a phone call from my sister-in-law. A visit from my mom and dad in the evening pretty much summed up my day, still recovering from a surgical procedure two days ago. I hope tomorrow I feel more like myself...but truthfully, every time I feel that hard circular port inserted under my skin on my chest, it feels like something Agent Scully from the X-Files might have had in the back of her neck...both alien, other worldly, and yet, life-changing. While Scully was an alien abductee, I'm one of those left behind...my medical experiments won't be conducted on a spaceship, but on the third floor af the Allegiance Professional Building in less than two weeks. Unlike Agent Scully, who was convinced her experiments were hurting her, I have to believe my procedures are being done to help me.
Someone asked me if I've gotten any statistics...and I know what they mean, what is my percentage of beating this and surviving? Truthfully, I haven't been given any such thing. I haven't even been given the stage of my cancer. Maybe I don't want to know. Would it change the fact of me going through treatment if my percentage of survival was below 50%? Below 30%? A slim chance? I don't think it would. I think as a "warrior," you have to be willing to fight, no matter what the odds. That's probably why I love the casino so much, I'm not afraid to gamble. And my mantra has always been, "Go big, or go home." This is probably the most important bet I've ever made....
Tuesday, July 1, 2014
Yesterday I had my first surgery...I had my port installed on the right side of my chest, and lymph nodes removed on my right. The port is put in to receive the chemotherapy infusions. I'm heavily bandaged on both sides, and can't shower until tomorrow because I can't get the dressings wet, I'm still a little weak and tired, but am happy to be home.
There are so many different people who work in a hospital setting! And it seems that every person who helped me yesterday was so friendly and introduced themselves and mentioned how long they had been working their job. Maybe it's a requirement for their job? I don't know, but I liked it. Even one of the transporters who took me and my bed to nuclear medicine mentioned this was her very first day,..however the girl who was with her assured me that it wasn't HER first day, so I shouldn't be concerned...
Nuclear medicine was a real treat. Have you ever had a shot? In the arm? The rear end? I've even had shots in my foot...but this was by far the worst...2 shots right into my breast. With no numbing medicine. It hurt really bad! Then I had to lay on a table while they took a picture that lasted for 5 minutes. Then I went back to pre- op and waited to be taken to surgery.
My surgeon was running late, and my anesthesiologist ended leaving, and another doctor took over for him. I let them know how I get nauseous after surgery, so they gave me a patch behind my ear, and 2 kinds of intravenous drugs to help prevent it...so I was a little surprised to wake up and still feel like I wanted to throw up. They wouldn't let me go home until I didn't feel sick any more, and it took a few hours before the nausea subsided.
I won't get pathology reports until Thursday or Friday...of course, it is a holiday weekend, so I wouldn't be surprised if it turns out to be next week for definitive results. My surgeon told my family my choice of starting chemo first is probably the best decision, because my lymph nodes looked very suspicious...that was the same phrasing used by the doctor who did my biopsy, so I won't be surprised if I'm told it is in my lymph. Right now I'm just vegging out, taking it easy, and living each day one day at a time. I'm doing ok.
There are so many different people who work in a hospital setting! And it seems that every person who helped me yesterday was so friendly and introduced themselves and mentioned how long they had been working their job. Maybe it's a requirement for their job? I don't know, but I liked it. Even one of the transporters who took me and my bed to nuclear medicine mentioned this was her very first day,..however the girl who was with her assured me that it wasn't HER first day, so I shouldn't be concerned...
Nuclear medicine was a real treat. Have you ever had a shot? In the arm? The rear end? I've even had shots in my foot...but this was by far the worst...2 shots right into my breast. With no numbing medicine. It hurt really bad! Then I had to lay on a table while they took a picture that lasted for 5 minutes. Then I went back to pre- op and waited to be taken to surgery.
My surgeon was running late, and my anesthesiologist ended leaving, and another doctor took over for him. I let them know how I get nauseous after surgery, so they gave me a patch behind my ear, and 2 kinds of intravenous drugs to help prevent it...so I was a little surprised to wake up and still feel like I wanted to throw up. They wouldn't let me go home until I didn't feel sick any more, and it took a few hours before the nausea subsided.
I won't get pathology reports until Thursday or Friday...of course, it is a holiday weekend, so I wouldn't be surprised if it turns out to be next week for definitive results. My surgeon told my family my choice of starting chemo first is probably the best decision, because my lymph nodes looked very suspicious...that was the same phrasing used by the doctor who did my biopsy, so I won't be surprised if I'm told it is in my lymph. Right now I'm just vegging out, taking it easy, and living each day one day at a time. I'm doing ok.
Subscribe to:
Posts (Atom)