Today is Day 9 post-chemo. Over the last week, I've learned that this process - this treatment - creates a New Normal. It's definitely new, but it isn't normal at all - but it is, and will continue to be, the way things are for at least the next 20 weeks. Oh joy...
In many respects I've had a good first ten days. With the exception of being a little more tired than usual, and mildly nauseous a couple of morning, life in general was pretty good. I had a four-day bout of unpleasantness because I was dehydrated and not eating enough fiber (I'll leave it at that), but was able to resolve that fairly easily, too.
In the early days, the steroids fueled a love-hate relationship with sleep, dreams and exhaustion. My body would fall asleep but my brain never turned off, and even with the help of sleep aids I found myself awake multiple times during the night after having odd, weird, or downright bad dreams. I would lie awake in bed for an hour, sleep fitfully for an hour, wake again, and finally crawl out of bed around 4:00 each morning. I was elated to wake, rested and peaceful, at 5:30 on Wednesday morning. I worked every day this week; it was my last week as Case Aid at FSCA and so I said goodbye to my clients, both big and small. I thought that it was smooth sailing from there.
On Friday morning I woke with a jolt at 2:30 am and could not go back to sleep. My dream was so vivid I had tears in my eyes. In the middle of this treatment, I dreamt, they found more cancer. Giant tumors that needed to be removed, but doing so would likely kill me. I was visiting all of my children, explaining this to them, telling them I loved them, saying goodbye...
All week people had been asking me how I was doing, and my standard response was
"Good, really good."
"Fine, really great."
"Like a rock star!"
And it was all true. Because physically, I was feeling so much better than I had expected. But emotionally, I had not let the reality of my New Normal sink in.
I have cancer. I am not cancer-free - not now, maybe not ever. Surgery has removed the tumor, but there is always the possibility of a free-roaming, rogue cancer cell left behind. The aggressive nature of my cancer cells means I am at high risk for recurrence, in my breast or somewhere else in my body. This treatment will hopefully eradicate any single last cell of cancer still wandering around, rent-free in my body. But it could come back - in six months, in a year, in three years, in 10 years. I don't know if or when it'll return. But it could, and I had yet to process that truth.
Thank goodness for dreams - except when they're really scary nightmares. Still cheaper than a therapist, except I can't skip a session I don't want to deal with
Friday ended up being the first "bad" day. Besides lack of sleep, I had been fighting a mild cold which, when you are doing chemo, makes you feel more like you have the flu. And then later, when you're really tired and still can't sleep, it makes you feel like you've been hit by a bus. Which in turns reminds you that, gosh, you still get to be hit by a bus nine more times before this is all over.
If you knew you were going to be hit by a bus when you walked out the front door, would you ever want to leave the house again?
It all just caught up with me, and I fell apart a little. I even skipped school today, which I never do and am feeling guilty about. But I still feel like hell, and decided that indulging in some self-care was worth having to make up lectures and homework.
I really am okay; I really do feel like a rock star. This chemo thing - it's a lot of hard work, and with every treatment the side effects will be cumulative. I feel great now; I don't know how I'll feel next week, or in six weeks, or in two months. This New Normal takes some getting used to - but I've never been "normal" anyway. Every day is a new day, and a new chance to explore being normal.
Saturday, January 28, 2012
Tuesday, January 24, 2012
Angels Among Us, Part Deux
Apparently, Angels don't pop up just at Wal-Mart; if you look around, you will find them everywhere.
I met an Angel at Michael's a couple of weeks ago, waiting in line while his wife purchased some craft items. They both looked to be in their late 70's and reminded me so much of my own grandparents. A funky 90's song came on over the speakers, and this gentleman started dancing - shuffling, turning slowly, swinging his hips, bopping his head. So I started bopping my head and swinging my hips, too. He came right over to me and there, in the middle of Michael's, we started dancing. His wife laughed this beautiful, warm, gentle laugh, and said, "I've got to keep an eye on him sometimes," to which he replied, "Life is too short not to dance!" We finished our dance, she completed her purchase, and they were gone.
Last week, I chatted with a fellow SW student at school; we've talked so many times and for the life of me I still can't remember her name, but we have the best conversations. She had the most beautiful, hand-knit rainbow cap on her head, and I asked her about it. Minutes later this cap is off her head and in my hands. I tried to give it back, but she wouldn't take it. She had purchased it from a small market in Texas, it can't be replaced or purchased online, every one is different and unique..."I was meant to bring it to you," she says. I was completely speechless. I still am.
I have a friend, who shall remain nameless, who chose to shave her head in my honor. I have known her professionally for many years, and in the last few years we have moved towards a wonderful friendship. I'll be honest and true: I don't know that I would be able to make the same sacrifice for someone else. I am still afraid of being bald, but perhaps a little less so...
It's so difficult to talk about Angels without including every single person I know at this moment - because every one of you has made an impact, a difference, during this time. My husband, my children, my parents, my sisters (and my sister and brother!), my grandbabies, who love me unconditionally, but especially when I'm at my most unloveable. My friends, who bring gifts of breads and spreads, quiches and brownies, fruit baskets and flowers. Friends I have yet to meet, who share fleece blankets and prayer shawls, puzzle books and hand sanitizer. Friends who take deliveries when we're not around. Friends who take time out of their own very, very busy lives to ask, to offer, to help, to share. Those who have been touched by something similar in their own lives, and reach out to send love and healing energy.
Never doubt the importance of simply being a part of someone's life. Each of you has touched me in a way you may not know or understand. Each of you is an Angel to me. I am humbled and blessed, and appreciative that you are part of my life. Thank you, so much, for being here with me.
Monday, January 23, 2012
I Can Haz Triathalon
Every year our local YMCA sponsors a "Lazy Triathlon" where, over the course of four weeks you run/walk, bike ride and swim a triatholon. You can compete in and complete different levels, from bronze to gold. Entry fees are minimal, and you come away not just with a really cool t-shirt, but also the bragging rights that you completed a triathlon (I suppose adding the "lazy" piece would be more ethical, but, well...)
At the beginning of January I decided to sign up for this year's LT, which was scheduled to begin January 16 and end February 12. I grabbed the flyer and thought I'd shoot for the Bronze level, which includes 20 miles of running/walking (I can do that!), 50 miles of biking (I think I can do that too!!), and 2 miles of swimming.
I forgot about the swimming.
So I checked out the pool. Standard pool, I suppose. Kinda big, nice, blue, chlorine aroma, all of that stuff. The flyer indicated a mile is 76 laps of the pool. I looked for the missing decimal place - surely they meant 7.6 laps. I looked down the length of the pool again and remembered the last time I actually swam in a pool - I might have been 14. But, never one to give up on a dream (and a cool t-shirt) I decided I'd ask for special permission to start swimming before the LT actually started (and for me, before port placement and chemo began).
I tried several times to connect with the person in charge of the LT, but our schedules never connected. Then suddenly it's the 16th and I've missed my pre-op/chemo window of opportunity. Sadly, I thought about giving up...
...when I decided to do it anyway, sans the swimming. And so, I have devised the
I Can(cer) Haz Triathlon*
Following the Bronze guidelines, I'm planning to run 20 miles, bike 50 miles, and...wait for it...10 hours of yoga. "10 hours of yoga?" you scoff?! Yeah, well, I had to come up with a third thing for the triathlon and, well, you go with what you know. Or something like that.
Because I'm making my own rules, I started on January 15 (a day early, I know), and my totals thus far are as follows:
Running/walking: 6.18 (13.82 remaining)
Biking: 6.25 (43.75 remaining)
Yoga: 1.25 (8.75 remaining)
It's good to have goals. I have to keep moving, keep my heart working, and keep my body alive during this time, even when I'm exhausted. It's that, or leaving a permanent divot in the sofa where my butt spends too much time already anyway.
Besides, there's always next year. Might be a good reason to learn to swim again.
*sending a shout-out to icanhazcheezeburger dot com, in case you've never visited...
At the beginning of January I decided to sign up for this year's LT, which was scheduled to begin January 16 and end February 12. I grabbed the flyer and thought I'd shoot for the Bronze level, which includes 20 miles of running/walking (I can do that!), 50 miles of biking (I think I can do that too!!), and 2 miles of swimming.
I forgot about the swimming.
So I checked out the pool. Standard pool, I suppose. Kinda big, nice, blue, chlorine aroma, all of that stuff. The flyer indicated a mile is 76 laps of the pool. I looked for the missing decimal place - surely they meant 7.6 laps. I looked down the length of the pool again and remembered the last time I actually swam in a pool - I might have been 14. But, never one to give up on a dream (and a cool t-shirt) I decided I'd ask for special permission to start swimming before the LT actually started (and for me, before port placement and chemo began).
I tried several times to connect with the person in charge of the LT, but our schedules never connected. Then suddenly it's the 16th and I've missed my pre-op/chemo window of opportunity. Sadly, I thought about giving up...
...when I decided to do it anyway, sans the swimming. And so, I have devised the
I Can(cer) Haz Triathlon*
Following the Bronze guidelines, I'm planning to run 20 miles, bike 50 miles, and...wait for it...10 hours of yoga. "10 hours of yoga?" you scoff?! Yeah, well, I had to come up with a third thing for the triathlon and, well, you go with what you know. Or something like that.
Because I'm making my own rules, I started on January 15 (a day early, I know), and my totals thus far are as follows:
Running/walking: 6.18 (13.82 remaining)
Biking: 6.25 (43.75 remaining)
Yoga: 1.25 (8.75 remaining)
It's good to have goals. I have to keep moving, keep my heart working, and keep my body alive during this time, even when I'm exhausted. It's that, or leaving a permanent divot in the sofa where my butt spends too much time already anyway.
Besides, there's always next year. Might be a good reason to learn to swim again.
*sending a shout-out to icanhazcheezeburger dot com, in case you've never visited...
Thursday, January 19, 2012
1 down, 9 to go
It's official - my first "kenotheramy" treatment is history. I now have but a mere 9 more to go. Whoo-hoo! We're almost there!
(I understand that proper grammar dictates I spell out any numbers under 10, but frankly the number "1" has far more visual impact than "one". And it's my blog, so grammar be damned, which is really hard for me to accept).
Even though there have already been other surgeries and procedures, this feels like the "beginning" of treatment. It's the beginning of my active involvement, perhaps my time for feeling empowered. I'm not unconscious and having it done to me, only to wake up with less breast tissue that before. Instead I am awake and alert and asking questions and seeing, watching, all that is going on around me, and in to me. It's an interesting, exciting, scary, humbling experience.
My finger poke reveals that all my levels are well, and treatment can begin. We talk with Laurie, my Cancer Concierge (aka, the clinical trials coordinator). I am the last person to be entered into the trial; it has now closed. I feel special, in some way, for getting in just under the wire. The nurse comes in to access the port, and I start to fall apart. Just a little. A couple of tears.
I'm afraid of the pain - how much is this going to hurt?
I'm afraid of the instrument - is it a torture device?
I'm afraid - because now it's real. There is no denying that I Have Cancer, and now I'm in treatment.
I can no longer hide from that really ugly fact.
The nurse sees me crying and gives me a hug - which only makes me cry harder. She validates every little thing I'm feeling, and tells me she'd be worried if I wasn't worried. She promised it would get better after the first treatment, because Factor X - the unknown - is gone.
She cleans the skin above my port, and opens the needle. It is very small and short, and in a "T" shape, coming out from a rubber/plastic flange about an inch long. Coming out of that flange is a small clear tube. The nurse tells me she's going to insert it, and I brace myself for the typical pain I feel when I get poked for an IV or a blood draw -
- but I didn't feel any of that. A quick little prick and it's in. And doesn't continue to hurt. It's just there, hanging out of my chest. She tapes me up, and then starts drawing blood - 9 vials, if I remember correctly - all the while talking about her BC experience. Laurie then talks about her experience, back when she was in the military. They talk about their lumpectomy scars ("Mine is like a huge divot" "Oh, well, mine was, but then they took the whole breast so that's not an issue now") and I realize I am truly among friends. They understand the fears I am having, not because they are professionals, but because they had been through this before. As awful as it sounds, their experience really helped me today.
Blood drawn, we're ready for the main event, so we walk down to the infusion suite. I'm in a corner, across from the windows so I can watch the snow blowing and drifting around the hospital. I settle into the comfy reclining chair and they give me a hot blanket from the blanket warmer (almost makes the trip worthwhile). Then I decide I need to pee before I get all hooked up, so I jump up and around the corner, then back and all settled in. But I'm still scared, because I still really just don't know...
The nurses are wonderful, smiling and happy and accommodating. And authentic. You can tell they are happy to be doing what they're doing (and more power to them, I'm not sure I could). Our nurse explains every little thing she's doing as she does it - what medication is going in, how long it will take, flushing in the port in between, what I might feel as the meds go in, etc. I'm given Emend, a long-term nausea medication, as well as some steroids and anti-anxiety medication (I was still a little agitated). That took about an hour to complete.
The nurse then comes around the corner draped in a blue gown, with blue gloves, and two large plastic bags that say, "Chemotherapy" in bold letters across the front (I wanted to tell her she must have the wrong medication because I'm using Kenotheramy, but maybe next time). She and another nurse ask for my name and birth date; they are double-checking the medication to be used (great idea!) The first medication is given via a syringe into the port line. The syringe is very large - like, almost Jim Carey-comically large - and filled with red Koolaid. Or, that's what it looks like. This is the "A", or Adriamycin. I already know that this is the medication that will cause my hair to fall out. I also know this is the medication that will cause me to pee red for a day as it's being flushed out of my system (drink more water, girl!!) The nurse injects the Adria into the line, pushing slowly but steadily - and in less than 10 minutes, that's over.
The second medication is the Cytoxan - an innocuous-looking clear plastic bag filled with clear fluid. Could be saline, for all I know, but I trust that it is what it's supposed to be. The nurse hangs the bag, hooks it up to the port line, and says it'll be done in half an hour.
Ken and I talk; I shiver under the blankets (sometimes the medication is kept cool or cold, so it's making me a little chilly). The next thing I know my IV machine is beeping - *bing*, I'm banana bread.
Ken and I look at each other - we really thought we'd be here half the day. I never had a chance to crack my textbook. I didn't even think about my knitting. It felt like it was over almost before it began.
A few minutes (and a Heparin flush) later, we are leaving. Bundled up against the snow and wind and cold, I realize I never had breakfast, so we plan lunch and dinner on the way home. I change out the shower curtain for a new one, clean up the bedroom a little bit. It only takes about an hour for the first side effect (or SE) to hit, but Immodium seems to be doing the trick. I'm not tired - the steroids will see to that. Nothing hurts, even the port.
I keep waiting to "feel" something - bad, awful, icky, poisonous, I guess - but it's not happening. I know, in a few days, I'll be feeling something akin to the flu, but in about a week I'll be feeling better again - just in time for the next treatment. But hey, today was the first step; every day is now one day closer to being done with this treatment.
I bought a deck of Affirmation cards yesterday, and intend to use them every day. Today's was so remarkably reflective of where I am at this point in my life:
"Everything works out for the best for me!"
And so it will.
(I understand that proper grammar dictates I spell out any numbers under 10, but frankly the number "1" has far more visual impact than "one". And it's my blog, so grammar be damned, which is really hard for me to accept).
Even though there have already been other surgeries and procedures, this feels like the "beginning" of treatment. It's the beginning of my active involvement, perhaps my time for feeling empowered. I'm not unconscious and having it done to me, only to wake up with less breast tissue that before. Instead I am awake and alert and asking questions and seeing, watching, all that is going on around me, and in to me. It's an interesting, exciting, scary, humbling experience.
My finger poke reveals that all my levels are well, and treatment can begin. We talk with Laurie, my Cancer Concierge (aka, the clinical trials coordinator). I am the last person to be entered into the trial; it has now closed. I feel special, in some way, for getting in just under the wire. The nurse comes in to access the port, and I start to fall apart. Just a little. A couple of tears.
I'm afraid of the pain - how much is this going to hurt?
I'm afraid of the instrument - is it a torture device?
I'm afraid - because now it's real. There is no denying that I Have Cancer, and now I'm in treatment.
I can no longer hide from that really ugly fact.
The nurse sees me crying and gives me a hug - which only makes me cry harder. She validates every little thing I'm feeling, and tells me she'd be worried if I wasn't worried. She promised it would get better after the first treatment, because Factor X - the unknown - is gone.
She cleans the skin above my port, and opens the needle. It is very small and short, and in a "T" shape, coming out from a rubber/plastic flange about an inch long. Coming out of that flange is a small clear tube. The nurse tells me she's going to insert it, and I brace myself for the typical pain I feel when I get poked for an IV or a blood draw -
- but I didn't feel any of that. A quick little prick and it's in. And doesn't continue to hurt. It's just there, hanging out of my chest. She tapes me up, and then starts drawing blood - 9 vials, if I remember correctly - all the while talking about her BC experience. Laurie then talks about her experience, back when she was in the military. They talk about their lumpectomy scars ("Mine is like a huge divot" "Oh, well, mine was, but then they took the whole breast so that's not an issue now") and I realize I am truly among friends. They understand the fears I am having, not because they are professionals, but because they had been through this before. As awful as it sounds, their experience really helped me today.
Blood drawn, we're ready for the main event, so we walk down to the infusion suite. I'm in a corner, across from the windows so I can watch the snow blowing and drifting around the hospital. I settle into the comfy reclining chair and they give me a hot blanket from the blanket warmer (almost makes the trip worthwhile). Then I decide I need to pee before I get all hooked up, so I jump up and around the corner, then back and all settled in. But I'm still scared, because I still really just don't know...
The nurses are wonderful, smiling and happy and accommodating. And authentic. You can tell they are happy to be doing what they're doing (and more power to them, I'm not sure I could). Our nurse explains every little thing she's doing as she does it - what medication is going in, how long it will take, flushing in the port in between, what I might feel as the meds go in, etc. I'm given Emend, a long-term nausea medication, as well as some steroids and anti-anxiety medication (I was still a little agitated). That took about an hour to complete.
The nurse then comes around the corner draped in a blue gown, with blue gloves, and two large plastic bags that say, "Chemotherapy" in bold letters across the front (I wanted to tell her she must have the wrong medication because I'm using Kenotheramy, but maybe next time). She and another nurse ask for my name and birth date; they are double-checking the medication to be used (great idea!) The first medication is given via a syringe into the port line. The syringe is very large - like, almost Jim Carey-comically large - and filled with red Koolaid. Or, that's what it looks like. This is the "A", or Adriamycin. I already know that this is the medication that will cause my hair to fall out. I also know this is the medication that will cause me to pee red for a day as it's being flushed out of my system (drink more water, girl!!) The nurse injects the Adria into the line, pushing slowly but steadily - and in less than 10 minutes, that's over.
The second medication is the Cytoxan - an innocuous-looking clear plastic bag filled with clear fluid. Could be saline, for all I know, but I trust that it is what it's supposed to be. The nurse hangs the bag, hooks it up to the port line, and says it'll be done in half an hour.
Ken and I talk; I shiver under the blankets (sometimes the medication is kept cool or cold, so it's making me a little chilly). The next thing I know my IV machine is beeping - *bing*, I'm banana bread.
Ken and I look at each other - we really thought we'd be here half the day. I never had a chance to crack my textbook. I didn't even think about my knitting. It felt like it was over almost before it began.
A few minutes (and a Heparin flush) later, we are leaving. Bundled up against the snow and wind and cold, I realize I never had breakfast, so we plan lunch and dinner on the way home. I change out the shower curtain for a new one, clean up the bedroom a little bit. It only takes about an hour for the first side effect (or SE) to hit, but Immodium seems to be doing the trick. I'm not tired - the steroids will see to that. Nothing hurts, even the port.
I keep waiting to "feel" something - bad, awful, icky, poisonous, I guess - but it's not happening. I know, in a few days, I'll be feeling something akin to the flu, but in about a week I'll be feeling better again - just in time for the next treatment. But hey, today was the first step; every day is now one day closer to being done with this treatment.
I bought a deck of Affirmation cards yesterday, and intend to use them every day. Today's was so remarkably reflective of where I am at this point in my life:
"Everything works out for the best for me!"
And so it will.
Tuesday, January 17, 2012
Overheard in the den
I talked with the Peanut this weekend about what was going on. By the time she comes to visit again, grandma is likely to be bald(ing) so it made sense to explain a few things in child-speak.
Then again, we're talking about the newly-turned six-year-old Peanut here, so child-speak is really a waste of time. The conversation went a little something like this:
"So, sweetie, I want to tell you why grandma's been kinda tired and sore lately."
"Okay."
"So, a while ago I went to see the doctor and the doctor told me I'm sick. I have a boo-boo in my breast, and the doctor had to take it out with surgery..."
"You had surgery?!"
"Yes, I did - do you want to see where? It's okay, you can touch it, it doesn't hurt."
"Okay."
"So, anyway, I have to take some medicine to make me better. It's not any kind of medicine you would ever take - it's a special medicine I have to take in the doctor's office, and I'll have to take it for a long time."
"What kind of medicine?"
"It has a long name, but we call it by a short name: chemo."
"What's the long name?"
"Chemotherapy."
"Kenotheramy. I'll call it that."
"Okay. The medicine will make me look kinda funny, and I didn't want you to worry about it when you saw me next time..."
"Why will you look funny?"
"Well, for one thing, my hair will fall out..."
"Your HAIR?!"
"Yes, and my eyebrows and my eyelashes. So grandma will be kinda bald."
"Okay. So you take kenotheramy and your hair falls out. Okay. What's on TV?"
And that was that. She's not worried, concerned or afraid. She has an aunt who has had severe health issues for many years, and she's used to hospitals and doctors and seeing people she loves endure surgery and treatments. She is an empathetic little girl who will likely adore my bald head; even when I'm exhausted and nauseous, she'll always be more concerned about whether or not Sponge Bob is on TV. And hey, we can snuggle and watch Ni Hao Ki-Lan all weekend long...
I hope to have the understanding and acceptance of life and its challenges that my little Peanut has; she inspires me to keep moving forward every day.
Then again, we're talking about the newly-turned six-year-old Peanut here, so child-speak is really a waste of time. The conversation went a little something like this:
"So, sweetie, I want to tell you why grandma's been kinda tired and sore lately."
"Okay."
"So, a while ago I went to see the doctor and the doctor told me I'm sick. I have a boo-boo in my breast, and the doctor had to take it out with surgery..."
"You had surgery?!"
"Yes, I did - do you want to see where? It's okay, you can touch it, it doesn't hurt."
"Okay."
"So, anyway, I have to take some medicine to make me better. It's not any kind of medicine you would ever take - it's a special medicine I have to take in the doctor's office, and I'll have to take it for a long time."
"What kind of medicine?"
"It has a long name, but we call it by a short name: chemo."
"What's the long name?"
"Chemotherapy."
"Kenotheramy. I'll call it that."
"Okay. The medicine will make me look kinda funny, and I didn't want you to worry about it when you saw me next time..."
"Why will you look funny?"
"Well, for one thing, my hair will fall out..."
"Your HAIR?!"
"Yes, and my eyebrows and my eyelashes. So grandma will be kinda bald."
"Okay. So you take kenotheramy and your hair falls out. Okay. What's on TV?"
And that was that. She's not worried, concerned or afraid. She has an aunt who has had severe health issues for many years, and she's used to hospitals and doctors and seeing people she loves endure surgery and treatments. She is an empathetic little girl who will likely adore my bald head; even when I'm exhausted and nauseous, she'll always be more concerned about whether or not Sponge Bob is on TV. And hey, we can snuggle and watch Ni Hao Ki-Lan all weekend long...
I hope to have the understanding and acceptance of life and its challenges that my little Peanut has; she inspires me to keep moving forward every day.
Saturday, January 14, 2012
It's a Girl!
Our little port - Portia - arrived via surgical procedure on Thursday, January 12th. She weighs in at maybe an ounce, and took about half an hour to arrive. Gratefully, her mother (that would be me) was asleep during the entire "birth."
The procedure was simple; we arrived at the surgery center at the appointed time, was escorted back to the holding area and prepped for surgery. It was determined I would have general anesthesia. I hated that idea - longer recovery time, sore throat, more drugs, but it made sense given the less-than-wonderful previous experience I had had with local anesthesia.
We had a little buddy in the bed next to me - Michael, or Mikey as he preferred to be called, who was three and having his tonsils removed. Poor little guy - cried and screamed the entire time. He was so scared. It got quiet when he went off to surgery; about half an hour later we were treated to his crying, screaming, and puking from across the holding area. He made it through with flying colors!
My surgery was delayed about an hour, which would have been awfu, except for the RN who was always ready with a syringe-full of something that would make me happy.
Now that we've been able to remove the dressing, we can see Portia in all her glory. Let me tell you that it's not as bad as it looks; much of the redness is due to removal of the large plastic "bandage" they place over the entire area to keep it dry and safe for 48 hours
The port is located under the large incision. It's about the size of a quarter, and raises the skin (you can see the "lump" where the port is located). The smaller incision at the top is where the catheter in inserted. The catheter runs in a tunnel under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein). If you look closely you can see the shadow of the catheter under my skin.
As before, I also have several small blisters because of the steri-strips. I have yet to figure out why I get these blisters, but they are always at one end of the steri-strips, not both, and not anywhere in between. A mystery for another day, I guess.
Surprisingly, Portia does not really hurt. Not that I'm playing with her or running my fingers over her repeatedly - right now, I prefer not to anger or frustrate her, and she's happiest when she's left alone and can rest. So we'll have another day of rest tomorrow.
Friday was chemo school - and yes, because I'm an overachiever, I got an A+. :-) Seriously, though, it was a great way to meet the nurse we would be working with, to talk about side effects and remedies, and to, finally, see the infusion room where chemo will take place. The infusion room is a large room with a pharmacy, a nurse's station, and several small areas separated by curtains. The room is brightened with large windows in every area. There is a comfortable-looking recliner, a television, and a chair for a visitor.
At the time of our visit there were two patients receiving treatment; one was a gentleman easily in his 70's, the other was an older women who could have been in her late 60's or early 70's. It was so sad for me to see them there, realizing how difficult it must be for them to endure this kind of treatment. I cried because I was scared, and because seeing the infusion room makes it all so much more real, but I also realized that I have nothing to cry about when I can be inspired by other patients who are likely having a much more difficult experience than I will.
So I shopped and cooked yesterday; I attended my first day of classes for the Winter term today. We had old friends over this evening for a "wear your craziest hat or hair" celebration of our new step forward. Portia was well received and loved by all. She will be instrumental in making my treatment much easier in many ways.
I already love her, even if I hate why she's here.
The procedure was simple; we arrived at the surgery center at the appointed time, was escorted back to the holding area and prepped for surgery. It was determined I would have general anesthesia. I hated that idea - longer recovery time, sore throat, more drugs, but it made sense given the less-than-wonderful previous experience I had had with local anesthesia.
We had a little buddy in the bed next to me - Michael, or Mikey as he preferred to be called, who was three and having his tonsils removed. Poor little guy - cried and screamed the entire time. He was so scared. It got quiet when he went off to surgery; about half an hour later we were treated to his crying, screaming, and puking from across the holding area. He made it through with flying colors!
My surgery was delayed about an hour, which would have been awfu, except for the RN who was always ready with a syringe-full of something that would make me happy.
Now that we've been able to remove the dressing, we can see Portia in all her glory. Let me tell you that it's not as bad as it looks; much of the redness is due to removal of the large plastic "bandage" they place over the entire area to keep it dry and safe for 48 hours
The port is located under the large incision. It's about the size of a quarter, and raises the skin (you can see the "lump" where the port is located). The smaller incision at the top is where the catheter in inserted. The catheter runs in a tunnel under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein). If you look closely you can see the shadow of the catheter under my skin.
As before, I also have several small blisters because of the steri-strips. I have yet to figure out why I get these blisters, but they are always at one end of the steri-strips, not both, and not anywhere in between. A mystery for another day, I guess.
Surprisingly, Portia does not really hurt. Not that I'm playing with her or running my fingers over her repeatedly - right now, I prefer not to anger or frustrate her, and she's happiest when she's left alone and can rest. So we'll have another day of rest tomorrow.
Friday was chemo school - and yes, because I'm an overachiever, I got an A+. :-) Seriously, though, it was a great way to meet the nurse we would be working with, to talk about side effects and remedies, and to, finally, see the infusion room where chemo will take place. The infusion room is a large room with a pharmacy, a nurse's station, and several small areas separated by curtains. The room is brightened with large windows in every area. There is a comfortable-looking recliner, a television, and a chair for a visitor.
At the time of our visit there were two patients receiving treatment; one was a gentleman easily in his 70's, the other was an older women who could have been in her late 60's or early 70's. It was so sad for me to see them there, realizing how difficult it must be for them to endure this kind of treatment. I cried because I was scared, and because seeing the infusion room makes it all so much more real, but I also realized that I have nothing to cry about when I can be inspired by other patients who are likely having a much more difficult experience than I will.
So I shopped and cooked yesterday; I attended my first day of classes for the Winter term today. We had old friends over this evening for a "wear your craziest hat or hair" celebration of our new step forward. Portia was well received and loved by all. She will be instrumental in making my treatment much easier in many ways.
I already love her, even if I hate why she's here.
Monday, January 9, 2012
So, the vacation is over...
For one week, we had no cancer-related activities, concerns or appointments to attend to. We talked, of course - we always talk - but our conversations were pedestrian: Did you remember to pick up milk and toilet paper? We made mundane decisions: Sushi or Chinese take-out tonight? We watched too many episodes of Mad Men. I made potato-leek soup, and started knitting an infinity scarf.
Well, okay - enough of that shit. Time to get back to reality.
On Friday, I had a pre-chemo haircut. My stylist, Angela, is a goddess; I asked for a super-short pixie cut, but instead she gave me what I really needed: a little something left on top to play with, style up with gel, or part to one side. I think there's even enough for a barrette or two - might have to borrow something fun from my grand-daughter.
So, here's before:
And here's after:
When I start to shed, I can just blame it on the cat.
Today was the final day of pre-testing. I've already had the chest x-ray (no spots on my lungs - hurray!) and EKG (looked great); today was the echocardiogram with contrast, and the full body bone scan with radioactive dye.
I'm at the hospital super-early in the Nuclear Medicine department for my radioactive dye injection. Yeah, I remember the NM department from my sentinel lymph node biopsy and the radioactive tracer injection, and I think I started to hyperventilate. Didn't help that my sweet little nurse, Arielle, has the word "student" in bold letters on her nametag. She takes me into the room directly across from the room I had been in for the SNB injection, and on the tray is this thing. The only way I can describe it is that it looks like a piece of lead pipe standing up on it's end; from inside you can see just the tip of a metallic syringe sticking out. I look at this thing, then I look at Arielle, then I see her nametag again, then I look at the thing, then I look at the door...
"I had an SNB a couple of weeks ago, without lidocaine," I try to say as nonchalantly as possible. "Is this going to be like that?"
Arielle looks at me - really, she can't be more than 22, what a sweetheart - and says, "Oh no. I know which doctor does that - I'm so sorry for your experience!" I hear blah-blah about why he goes without lidocaine, and as I'm thinking about making a break for it she says, "This won't hurt at all. We use a small needle and it's not a big deal, really."
Sure enough, she finds a vein, minimal pin-prick-poke, and I'm done. Now, I have to wait for three hours.
So, I run some errands. I knit my scarf. I go back for my Echo. The cardiology RN explains they need to do the last part of the echo with a "bubble contrast" (okay, aren't bubbles in my veins supposed to kill me? I've seen ER and House and Marcus Welby and Law & Order). We spend 45 minutes viewing and listening to my heart from all sorts of angles. In some ways it was life-affirming and loving, and I was glad the RN let me watch.
Time for bubble contrast - which requires an IV. The RN looks at my veins and decides to call in a more experienced RN - who calls IV therapy after openly admitting my veins are "the smallest I've seen in years!"
(Seriously - I am really tired of being so damned special and unique)
IV therapy finds a vein on the side of my wrist bone, and after several pokes gets it started. I didn't cry this time - perhaps I'm getting used to this, perhaps I just realize I'd better get used to it because it's not going to get any better anytime soon.
The bone scan was an interesting experience. I borrowed a picture of the exact machine from some poor little kid's blog:
The plate on top comes down just above my nose, then moves all the way down my body, incrementally, until it has scanned me from the top. Takes about 10 minutes. Just a little scary while it's directly over my face. Then, another plate underneath me moves and takes the bottom of my body. Up on the computer screen are my scans - me, completely naked of skin and muscles and organs and everything, just my bones.
I quickly realize that when I lie comfortably, I am actually bending to the right. Kinda weird. But anyway...
So Arielle then takes detailed individual scans of my pelvis, my chest, and my head - "places where, well, where the doctor would be looking for something." In English, that means they want scans of the places where metastatic cancer would show up first. Okay. Take your time, Arielle.
And this concludes our chemo pre-testing.
So after a morning of tests, it's two days off until port placement on Thursday. I'm much happier about that, especially after today; I cannot imagine trying to do IV chemo with the veins I've inherited from my mother.
A couple more days of rest, relaxation, and mundane conversations. But every day is a day to be grateful, being alive and able to fight this battle. Even if it means being poked, prodded and scanned along the way.
Well, okay - enough of that shit. Time to get back to reality.
On Friday, I had a pre-chemo haircut. My stylist, Angela, is a goddess; I asked for a super-short pixie cut, but instead she gave me what I really needed: a little something left on top to play with, style up with gel, or part to one side. I think there's even enough for a barrette or two - might have to borrow something fun from my grand-daughter.
So, here's before:
When I start to shed, I can just blame it on the cat.
Today was the final day of pre-testing. I've already had the chest x-ray (no spots on my lungs - hurray!) and EKG (looked great); today was the echocardiogram with contrast, and the full body bone scan with radioactive dye.
I'm at the hospital super-early in the Nuclear Medicine department for my radioactive dye injection. Yeah, I remember the NM department from my sentinel lymph node biopsy and the radioactive tracer injection, and I think I started to hyperventilate. Didn't help that my sweet little nurse, Arielle, has the word "student" in bold letters on her nametag. She takes me into the room directly across from the room I had been in for the SNB injection, and on the tray is this thing. The only way I can describe it is that it looks like a piece of lead pipe standing up on it's end; from inside you can see just the tip of a metallic syringe sticking out. I look at this thing, then I look at Arielle, then I see her nametag again, then I look at the thing, then I look at the door...
"I had an SNB a couple of weeks ago, without lidocaine," I try to say as nonchalantly as possible. "Is this going to be like that?"
Arielle looks at me - really, she can't be more than 22, what a sweetheart - and says, "Oh no. I know which doctor does that - I'm so sorry for your experience!" I hear blah-blah about why he goes without lidocaine, and as I'm thinking about making a break for it she says, "This won't hurt at all. We use a small needle and it's not a big deal, really."
Sure enough, she finds a vein, minimal pin-prick-poke, and I'm done. Now, I have to wait for three hours.
So, I run some errands. I knit my scarf. I go back for my Echo. The cardiology RN explains they need to do the last part of the echo with a "bubble contrast" (okay, aren't bubbles in my veins supposed to kill me? I've seen ER and House and Marcus Welby and Law & Order). We spend 45 minutes viewing and listening to my heart from all sorts of angles. In some ways it was life-affirming and loving, and I was glad the RN let me watch.
Time for bubble contrast - which requires an IV. The RN looks at my veins and decides to call in a more experienced RN - who calls IV therapy after openly admitting my veins are "the smallest I've seen in years!"
(Seriously - I am really tired of being so damned special and unique)
IV therapy finds a vein on the side of my wrist bone, and after several pokes gets it started. I didn't cry this time - perhaps I'm getting used to this, perhaps I just realize I'd better get used to it because it's not going to get any better anytime soon.
The bone scan was an interesting experience. I borrowed a picture of the exact machine from some poor little kid's blog:
The plate on top comes down just above my nose, then moves all the way down my body, incrementally, until it has scanned me from the top. Takes about 10 minutes. Just a little scary while it's directly over my face. Then, another plate underneath me moves and takes the bottom of my body. Up on the computer screen are my scans - me, completely naked of skin and muscles and organs and everything, just my bones.
I quickly realize that when I lie comfortably, I am actually bending to the right. Kinda weird. But anyway...
So Arielle then takes detailed individual scans of my pelvis, my chest, and my head - "places where, well, where the doctor would be looking for something." In English, that means they want scans of the places where metastatic cancer would show up first. Okay. Take your time, Arielle.
And this concludes our chemo pre-testing.
So after a morning of tests, it's two days off until port placement on Thursday. I'm much happier about that, especially after today; I cannot imagine trying to do IV chemo with the veins I've inherited from my mother.
A couple more days of rest, relaxation, and mundane conversations. But every day is a day to be grateful, being alive and able to fight this battle. Even if it means being poked, prodded and scanned along the way.
Thursday, January 5, 2012
Angels Among Us
I needed to pick up a few random items from the store the other day - envelopes, hangers, cat food, cheese. Not a Polly's or Kroger run, so it was either Meijers (allllll the way across town) or the Axis of Evil (aka WalMart). For a variety of reasons I do everything in my power not to set foot inside AofE, but on Tuesday, armed with my list, I grab a handbasket, lower my eyes to avoid seeing clients, and walk as fast as possible to Get. This. Over. With.
"You're wearing my hat."
I look up to see an impeccably dressed older woman pushing a grocery cart, looking directly at me.
"You're wearing my hat," she says again. I touch the red cloche I had bought a couple of days before at Elder-Beerman - after-holiday sales are a blessing. She is sleek and sharp and beautiful in her leather coat and black dress and heather grey stockings. Her gold earrings reflect her gold-rimmed glasses, behind which are the kindest eyes I have ever seen. I am the anti-her, in my red hat, slightly dirty blue Columbia jacket, tan sports slacks (they can't be sweat pants if they're boot cut, 'k?) and running shoes.
She pats the little black leather beret perched jauntily on her perfectly coiffed hair (and yes, tilted ever so slightly to the left) (really, if you had seen this woman, you would use the word "jauntily" too) and says, "I bought that same hat last year at Elder-Beerman - it's my favorite hat! I was going to wear it today but I thought this one went better with my outfit. I loved it so much I went back and bought a black one. I wish I had bought more - I wear it all the time.
She reaches out and touches the flower on the side of my hat. "I think my flower is different than this; maybe a little smaller," she says.
"I bought it this weekend," I reply. And then, for no reason I can justify, I simply say, "I'm learning to wear hats, because I start treatment in a couple of weeks and will start losing my hair, so I decided to invest in some fun hats, but I bought a wig, too, but I don't like it as much as hats so far..." My voice trails off because I suddenly realize I'm telling a complete stranger all these personal and private things about my life and me and I cannot understand why I am doing this...
She lets go of her cart and says, "I have to give you a hug, come here." And I do. I let her envelope me in her arms and she rocks me back and forth, hugging me tightly, saying, "Honey, you're going to be okay. It's all going to be okay. I know it is." I hug her tightly, trying desperately not to cry - what is this??
She lets go slightly and steps back, her nose just inches away from mine. Her sparkling eyes look into my soul, I swear, and she says, "You are going to be okay."
We step back from each other, and she grabs ahold of her cart again. "Still love that hat," she says. "Happy new year sweetie! I'll say a prayer for you!"
And she's gone.
I realize that I never got her name - never thought to ask. I wander around, hoping to run into her again, but I don't see her anywhere.
The kindness of strangers is a rare gift indeed.
"You're wearing my hat."
I look up to see an impeccably dressed older woman pushing a grocery cart, looking directly at me.
"You're wearing my hat," she says again. I touch the red cloche I had bought a couple of days before at Elder-Beerman - after-holiday sales are a blessing. She is sleek and sharp and beautiful in her leather coat and black dress and heather grey stockings. Her gold earrings reflect her gold-rimmed glasses, behind which are the kindest eyes I have ever seen. I am the anti-her, in my red hat, slightly dirty blue Columbia jacket, tan sports slacks (they can't be sweat pants if they're boot cut, 'k?) and running shoes.
She pats the little black leather beret perched jauntily on her perfectly coiffed hair (and yes, tilted ever so slightly to the left) (really, if you had seen this woman, you would use the word "jauntily" too) and says, "I bought that same hat last year at Elder-Beerman - it's my favorite hat! I was going to wear it today but I thought this one went better with my outfit. I loved it so much I went back and bought a black one. I wish I had bought more - I wear it all the time.
She reaches out and touches the flower on the side of my hat. "I think my flower is different than this; maybe a little smaller," she says.
"I bought it this weekend," I reply. And then, for no reason I can justify, I simply say, "I'm learning to wear hats, because I start treatment in a couple of weeks and will start losing my hair, so I decided to invest in some fun hats, but I bought a wig, too, but I don't like it as much as hats so far..." My voice trails off because I suddenly realize I'm telling a complete stranger all these personal and private things about my life and me and I cannot understand why I am doing this...
She lets go of her cart and says, "I have to give you a hug, come here." And I do. I let her envelope me in her arms and she rocks me back and forth, hugging me tightly, saying, "Honey, you're going to be okay. It's all going to be okay. I know it is." I hug her tightly, trying desperately not to cry - what is this??
She lets go slightly and steps back, her nose just inches away from mine. Her sparkling eyes look into my soul, I swear, and she says, "You are going to be okay."
We step back from each other, and she grabs ahold of her cart again. "Still love that hat," she says. "Happy new year sweetie! I'll say a prayer for you!"
And she's gone.
I realize that I never got her name - never thought to ask. I wander around, hoping to run into her again, but I don't see her anywhere.
The kindness of strangers is a rare gift indeed.
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