I finished my first 3 months of chemotherapy treatments last week. And not too much worse for the wear so far. Aside from extra fatigue, I pretty much continue to evade all other common chemo side-effects and I continue to count my many many blessings!
I had a PET scan (full body cancer scan) this week to determine how well the chemo has done its job so far. I will find out the results of that scan in 2 more weeks. Here's how these results could pan out:
A) Complete remission. (very unlikely) No more chemo. Whoo Hoo! On to surgery.
B) Measurable reduction. (most likely) I'm guessng 20-30% based on how much the tumors in the breast have reduced. In this case we carry on with chemo for 3 more months and then measure again.
C) No shrinkage, but no new growth. (also likely) This would be disappointing, but acceptable. We'd then have to decide if we do 3 more months of the same chemo or if we switch tracks to another chemo or to hormone therapy.
D) Growth. (please, no) But again, there are still other therapies to try so it's not the end of the world.
Now to go enjoy my 2 weeks of not knowing in sweet ignorant bliss.
Friday, January 25, 2013
Wednesday, January 16, 2013
My 'Word' This Year
At my cancer support group last week we talked about setting goals for the year. We were asked to choose a single word and then to focus our goals around that word - and to keep that word in mind as we made decisions throughout the year.
My word this year is PREPARE.
For me this means...
My word this year is PREPARE.
For me this means...
- Prepare to meet God.
- *Start each day with a prayer dedicating my time that day to Him. Then practice and learn service in His way.
- *Attend the temple bi-weekly to bring me back into focus and closeness with Him.
- Prepare to leave my family.
- **Get my will/trust done.
- **Document account/password information.
- **Document my death wishes and funeral wishes.
- **Start a habit of writing regular love notes to my husband and kids.
- Help finish my mom's personal history (a family undertaking).
- Read at least one personal history of a previously deceased family member.
- Write my personal history. Include parental advice on key topics such as friends, schooling, dating, marriage, raising kids, making big decisions, seeking a personal testimony, etc. This goal will likely expand beyond this year.
- Prepare to kick cancer's butt and live 60 more years.
- *Learn and implement the cancer fighting 'Alkaline Diet'.
- Learn relaxation techniques.
- **Make it to bed on time and prioritize my sleep.
- **Exercise as often and as much as my body will allow (factoring in my own naps and a busy 18-month-old).
- **Make it through chemo, surgery and everything else they throw at me with an Attitude of Gratitude for the best cancer fighting knowledge we have so far and for the family and friends who carry me and my family through it both physically and emotionally.
* Key goal for the year.
** A habit already going, or a goal already almost done.
(Check out my 'Goal Progress' link at the top of the page)
I've heard some other great words this year: Love, Determination, Routine, Happiness. What word would you pick?
Wednesday, January 9, 2013
Chemo By The Numbers
Today is chemo day.
# of chemo treatments I've received: 8
# of treatments still to go: 10 (maybe more)
# of chemo treatments my mom received over her 14 year battle: over 60 (in 7 different sessions)
I receive my treatments from the same facility my mom went to. Most of the nurses recognize me as Linda's daughter and have made comments about how wonderful and kind my mom was and how loving and supportive my dad was and how he'd sit and read to her during her infusions. It's nice going to a place where a good reputation has already been set for me and where I feel a connection with my mom as I literally share in her experience.
What is it like in the chemo room?
The room is about 3x long as it is wide, one wall is all windows that face a small courtyard, the opposite wall is a long desk where the nurses sit and work. All along the window wall is a column of green leather recliners. Facing these recliners, down the middle part of the room is a second column of recliners.
# of recliners in the room: 16
# of chemo nurses on duty: 6 (plus 3 others who help only with the starting blood work)
# of female nurses: 3
# of male nurses: 3 (The guys are my favorites. More happy, more kind. And they worked with my mom more often.)
# of patients being treated at once (including me): 13
# of male patients: 8
# of female patients: 5
# of patients in their 30's: 1 (me)
# of patients in their 40's: 6 (3 women, 3 men)
# of patients between 50-70: 3 (all men)
# of patients over 70: 3 (1 woman, 2 men)
# of patients with at least one person sitting by them: 11
# of patients with multiple attendants: 4
# of patients asleep: 7
# of patients without hair: 7 (3 women, 4 men)
# of patients dressed up for the occasion: 2 (do they have a presentation to give after this or something?)
# of odd looks I get as I try to observe and count the numbers: 19
# of nurses asking me if I'm lost: 1
What is it like to get chemo?
# of needle pokes I get: 1 (thanks to my port they get it right every time - as opposed to the multiple pokes I often get when getting ivs in my arm)
# of times it hurts: 1/4 (much less painful than an arm iv)
# of bags hanging from my iv rack: 4 or 5 (depending on the treatment that day)
# of hours hooked up to iv: 3
# of hours at the clinic (including doctor visits and preparation time): 4-5
# of hours patients who get the once-every-3-weeks treatment might be there: 6-8
# of times I shuffle with my iv pole to the bathroom: 2
# of blankets I request from the warmer: 2
# of hours I typically sleep: 1
# of meals consumed during treatment: 1 (typically Anthony brings in lunch from Subway)
# of books we've read together during treatment: 3/4 of The Beyonders
That's all I can think to report on. Did I miss anything? What are you curious about with this process?
# of chemo treatments I've received: 8
# of treatments still to go: 10 (maybe more)
# of chemo treatments my mom received over her 14 year battle: over 60 (in 7 different sessions)
I receive my treatments from the same facility my mom went to. Most of the nurses recognize me as Linda's daughter and have made comments about how wonderful and kind my mom was and how loving and supportive my dad was and how he'd sit and read to her during her infusions. It's nice going to a place where a good reputation has already been set for me and where I feel a connection with my mom as I literally share in her experience.
What is it like in the chemo room?
The room is about 3x long as it is wide, one wall is all windows that face a small courtyard, the opposite wall is a long desk where the nurses sit and work. All along the window wall is a column of green leather recliners. Facing these recliners, down the middle part of the room is a second column of recliners.
# of recliners in the room: 16
# of chemo nurses on duty: 6 (plus 3 others who help only with the starting blood work)
# of female nurses: 3
# of male nurses: 3 (The guys are my favorites. More happy, more kind. And they worked with my mom more often.)
# of patients being treated at once (including me): 13
# of male patients: 8
# of female patients: 5
# of patients in their 30's: 1 (me)
# of patients in their 40's: 6 (3 women, 3 men)
# of patients between 50-70: 3 (all men)
# of patients over 70: 3 (1 woman, 2 men)
# of patients with at least one person sitting by them: 11
# of patients with multiple attendants: 4
# of patients asleep: 7
# of patients without hair: 7 (3 women, 4 men)
# of patients dressed up for the occasion: 2 (do they have a presentation to give after this or something?)
# of odd looks I get as I try to observe and count the numbers: 19
# of nurses asking me if I'm lost: 1
What is it like to get chemo?
# of needle pokes I get: 1 (thanks to my port they get it right every time - as opposed to the multiple pokes I often get when getting ivs in my arm)
# of times it hurts: 1/4 (much less painful than an arm iv)
# of bags hanging from my iv rack: 4 or 5 (depending on the treatment that day)
# of hours hooked up to iv: 3
# of hours at the clinic (including doctor visits and preparation time): 4-5
# of hours patients who get the once-every-3-weeks treatment might be there: 6-8
# of times I shuffle with my iv pole to the bathroom: 2
# of blankets I request from the warmer: 2
# of hours I typically sleep: 1
# of meals consumed during treatment: 1 (typically Anthony brings in lunch from Subway)
# of books we've read together during treatment: 3/4 of The Beyonders
That's all I can think to report on. Did I miss anything? What are you curious about with this process?
A Better Day
For the sake of balance, I want to report on a good day too. Monday was a good day. I got to sleep in. My girls played happily in the playroom with a friend for an hour which gave me time to exercise. I implemented a new "healthy eating" system for teaching my kids (and myself) about healthy, balanced food choices. I took a little nap while my kids watched a little TV and then we turned it off for the day. I helped A get his homework done. I made homemade pizza for dinner with whole wheat flour and turkey pepperoni. I turned on some Disneyland music and the kids and I danced around the kitchen and talked about our upcoming trip while the pizza cooked. We had a fun family outing to Walmart where we played with all the toys and didn't buy any. I laughed with my kids. I cuddled with my kids. My husband read to me as I fell peacefully asleep that night. Tuesday was similar. These may not be my ultimate "best" days of motherhood, but they are normal days. They are good, happy days.
Sunday, January 6, 2013
I'm Not SuperMom. Go Figure.
Friday turned out a bit bumpy. The morning was ok, but when my afternoon nap was interrupted after only 10 minutes I spent the rest of the day trapped in exhaustion. So for the next 5 hours I layed on the couch half-asleep while my children "took care of themselves."
My 2 oldest watched a marathon of My Little Pony (my least favorite Netflix show) while my toddler wandered around the kitchen pulling out every pan and tupperware and dancing on the table until I finally gave up plucking her down and pushing away the chairs (which took all of two attempts). Around 5pm my bleary-eyed children, noticing their rumbling bellies, bounced on my lifeless body complaining about hunger. This elicited some response from me like, "You guys are mature enough to cook your own dinner now. Don't burn anything... like the whole the house." Eager to prove their independence they disappeared into the pantry, returning to the couch moments later with cupfuls of dry Marshmallow Mateys and a large helping of brownies. I congratulated them on "eating their colors" and reminded them to feed the baby too. I'm not sure if the baby ate any of the brownie or just used it as a crayon to decorate her face, clothes, hair, legs, floor, chairs and walls. Yeah, not really my best day of motherhood (but not my worst either). And it's not like I was preoccupied. Nor did I lack ideas of better things to do with my adorable children. I just didn't have the energy to care. Thank you chemo.
Ok, so I've been anticipating this from the first mention of chemo. I watched my mom go through it multiple times and she and I often compared being on chemo to going through pregnancy. It lasts about as long, wipes you out and makes you nauseated (and often a handful of other similar challenges). If I wasn't on chemo there's an ok chance I might have opted for pregnancy #4, so I suppose I could be in this exhausted state one way or another. It's frustrating though.
By the time S was born I was feeling pretty lousy about my motherhood. We watched 8-10 hours of TV a day, ate 3 square meals of cereal and were lucky to bathe the kids once a week. During the past year I've managed to wean back our screen time (computer included) to under 2 hours a day, implemented a program to regulate meal/snack times and food choices, and had introduced daily chores (my children learned how to put away their own clean laundry!). I was on the UP and I was feeling a wee bit super-momish.
But exhaustion has returned. Maybe not everyday, but more often lately. I tease Anthony that his blog post about Service jinxed us. I've been tired ever since that post. It just seems to be the way of things. 2 steps forward, 2 steps back.
But my sister reminded me Friday night that we weren't raised by a SuperMom either. She recalls being a TV addict as a kid and I remember eating a LOT of cereal, often after refusing to eat dinner. From my motherhood vantage point I look back and imagine that my sisters and I were picky and whiny and our mom was tired and frustrated so she just let it go. But in my childhood memory I recall being supremely happy. My mom managed to instill us with love and joy regardless of all the cereal and VHS movies. And somehow my sisters and I turned out to be happy functional adults who watch little TV and enjoy healthy meals. My sister also reminded me that my kids are in a home where they are very much loved, they are not abused or neglected, and they are being taught good values. Despite all the parenting magazines recommendations, despite the super programs of the other supermoms in the neighborhood, despite the lack of soccer and dance classes, life goes on (hallelujah!). With just as much chance to turn out as normal as the next guy. No super heroes here... and it's fine. It's fine. Now back to bed.
My 2 oldest watched a marathon of My Little Pony (my least favorite Netflix show) while my toddler wandered around the kitchen pulling out every pan and tupperware and dancing on the table until I finally gave up plucking her down and pushing away the chairs (which took all of two attempts). Around 5pm my bleary-eyed children, noticing their rumbling bellies, bounced on my lifeless body complaining about hunger. This elicited some response from me like, "You guys are mature enough to cook your own dinner now. Don't burn anything... like the whole the house." Eager to prove their independence they disappeared into the pantry, returning to the couch moments later with cupfuls of dry Marshmallow Mateys and a large helping of brownies. I congratulated them on "eating their colors" and reminded them to feed the baby too. I'm not sure if the baby ate any of the brownie or just used it as a crayon to decorate her face, clothes, hair, legs, floor, chairs and walls. Yeah, not really my best day of motherhood (but not my worst either). And it's not like I was preoccupied. Nor did I lack ideas of better things to do with my adorable children. I just didn't have the energy to care. Thank you chemo.
Ok, so I've been anticipating this from the first mention of chemo. I watched my mom go through it multiple times and she and I often compared being on chemo to going through pregnancy. It lasts about as long, wipes you out and makes you nauseated (and often a handful of other similar challenges). If I wasn't on chemo there's an ok chance I might have opted for pregnancy #4, so I suppose I could be in this exhausted state one way or another. It's frustrating though.
By the time S was born I was feeling pretty lousy about my motherhood. We watched 8-10 hours of TV a day, ate 3 square meals of cereal and were lucky to bathe the kids once a week. During the past year I've managed to wean back our screen time (computer included) to under 2 hours a day, implemented a program to regulate meal/snack times and food choices, and had introduced daily chores (my children learned how to put away their own clean laundry!). I was on the UP and I was feeling a wee bit super-momish.
But exhaustion has returned. Maybe not everyday, but more often lately. I tease Anthony that his blog post about Service jinxed us. I've been tired ever since that post. It just seems to be the way of things. 2 steps forward, 2 steps back.
But my sister reminded me Friday night that we weren't raised by a SuperMom either. She recalls being a TV addict as a kid and I remember eating a LOT of cereal, often after refusing to eat dinner. From my motherhood vantage point I look back and imagine that my sisters and I were picky and whiny and our mom was tired and frustrated so she just let it go. But in my childhood memory I recall being supremely happy. My mom managed to instill us with love and joy regardless of all the cereal and VHS movies. And somehow my sisters and I turned out to be happy functional adults who watch little TV and enjoy healthy meals. My sister also reminded me that my kids are in a home where they are very much loved, they are not abused or neglected, and they are being taught good values. Despite all the parenting magazines recommendations, despite the super programs of the other supermoms in the neighborhood, despite the lack of soccer and dance classes, life goes on (hallelujah!). With just as much chance to turn out as normal as the next guy. No super heroes here... and it's fine. It's fine. Now back to bed.
Wednesday, December 19, 2012
Better Me Than Them... But Still No Fair!
Anthony and I watched a comedian on dvd last night and it made for a good laugh. He had this bit on there about how he hates going to the gym because he doesn't actually like to work out. The basic gist was that he goes and stands on the treadmill and watches The Food Network then picks up some McDonalds on his way home. I laughed because I can definitely relate!
But after the dvd was over and I was getting ready for bed and prepping for chemo today, this comedic bit was churning in my head and I was feeling pretty angry about it. It makes me mad that I have tried to take care of my health - I workout regularly, I eat decently (I say as I am snacking on Chex Mix), I'm mentally and emotionally stable and have healthy relationships. This summer when I signed up for Life Insurance (yeah, just in time, huh?) I was totally patting myself on the back for having a perfect blood report and even low cholesterol! So what gives?
There are so many health issues out there that are strongly tied to lifestyle. But this breast cancer stuff is aggravatingly unfair! Despite all I can do (and there are a zillion ideas out there) it might still come back to get me. Do I change my diet? Go chemical free? Get rid of my cell phone? Unplug my microwave? Take this or that herb or supplement? Move to a small farm in Wyoming 20 miles from anyone with no TV, computer or phone and eat only homegrown crops? I'm not about to go that far, but it's so aggravating that there is no obvious answer to fix this problem and doubly aggravating that I've been doing all the basic healthy things my whole life and yet it still got me! Stupid, stupid cancer!
My mind won't let me wander too far in a pity party though (at least not today). One thing I have thought of many times since this started is that I would so much rather have the disease be upon me than upon one of my little children. I don't necessarily think I "signed up" in heaven to take this instead of them, but I do know that I can have panic-attacks when my kiddos are sick (the first time A ever bonked his head I was nearly hyperventilating). If I have to fear for someone's well-being and life, I'd rather it be mine. Furthermore, in the wake of a tragedy like the Connecticut shootings, I am reminded once again that I'm still here! It may be scary sometimes, but at least for right now I am still here. I can still cuddle with my kids and spread a little cheer and love to someone else. I may not always be great at that, but I want to be.
At this moment Chemo Round 6 is on tap. I'm tired, cold and jittery right now, but can't quite fall asleep. If I follow my pattern, I'll go home in a couple hours, sleep until 5, wake up feeling fine but buzzy in my head, stay up until 2am and then get back into my regular routine.
Sunday, December 16, 2012
On Service
MM (Metastatic Musings) welcomes Anthony Johnson as a guest author. Anthony is a regular reader and assistant editor of MM. In addition to being the husband of MM's primary author, he enjoys pina coladas, long walks on the beach, and getting caught in the rain.
That is a partially fictional tale. The true part is that we have had so much of an outpouring of love and support from so many people. From church, from family, from work, from friends. We really do appreciate it so much.
Yet, oh the plethora of emotions that come with being served! First, there is a part of us that feels guilty, maybe a little embarrassed, because at this point Heidi is doing so well. The chemo treatments have gone great, essentially without a hitch, and other than being a little tired on the day of, Heidi doesn't really feel much different than if she were going about her normal life. So if we're getting so much sympathy and help and support from everyone, shouldn't we have something to show for it? Don't we need to carry our weight in suffering, in nausea and tiredness and blah-ness, in order to deserve all the help we're getting?
Then there's the feeling of wanting to ration the help. If Heidi's doing so well right now, maybe we should put off some of the help now so that if/when the tough parts do come, we won't have spent all of our tokens. If we allow ourselves to be served so much now, while Heidi's still "normal", are we just burning everyone out? When she's actually throwing up and not doing well, will they exclaim "I made you dinner while you were out on the town, missie! Make your own dinner this time!"
Then there's the realization that service requires two parties, namely those serving and those being served, and service will break down if either of those parties is not cooperative. Have you ever tried to serve someone who just will not be served? Isn't it so frustrating?
Service is a wonderful thing, precisely because it endows blessings on both those being served and those serving. Yet especially in our LDS culture we emphasize serving others so much more than being served by others, that sometimes we can get this impression that serving others is the "higher" virtue. So understandably we get an abundance of willing servers and a dearth of those willing to be served. And yet it takes two willing parties.
Having been in that situation of wanting to serve someone who is uncooperative in being served, Heidi and I resolved awhile back that we would not be those people, so hard to serve. So, again, we are so grateful for your help and support, and we will continue to welcome it. We just hope that you aren't put off by Heidi's good health. Part of the blessing that Heidi gets from all this is just in knowing that people are thinking about her, and that is needed whether or not she can make her own dinner. And we love the visits.
P. and his wife C. solemnly approached the Johnson's front door, trying to be as respectful as possible.
"I hope we're not waking her up by coming over right now. She's probably completely wiped out by the chemo treatments." C. said.
P. held a casserole dish full of lasagna and C. a bowl of salad for the Johnsons. P. approached the door and rang the doorbell. "When does the hair usually start to fall out?"
"I don't know. Man, that's gotta be tough! The nausea. And all the surgeries. And she's got to be ultra paranoid about germs because if she gets an infection, it's pretty much lights out."
The conversation put them both in a pretty somber mood. They stood at the front door, waiting, thinking about their own mortality, reminding themselves of how fragile life is.
They waited.
And they waited.
"I thought she said she'd be home for us to drop the dinner off."
"Hmm. Well, we can come back later."
Just as they were about leave they heard the skid of tires. Heidi zipped into the driveway. She jumped out and said,"Oh, hey you guys, I completely spaced that you were coming to bring over dinner." She pulled a baby out of a car seat, then went to the trunk as the other two kids streamed out of the car. In a moment she had three grocery bags in her left hand, a baby on her hip, an additional grocery bag in her right hand, and keys between her teeth. "Shanks so much for doing zhis. I really appreciate it." She came to the door, rearranged her bags, deftly dropped the keys into a free hand, unlocked the door and pushed it open with a free hip.
"Hi Heidi. Uh, so... how are you feeling?" P. asked, surprised at the entrance.
"Well, the kids were hellians at the grocery store. I'm still recovering from that, but otherwise, I can't really complain."
They chatted for a few minutes in the house before Heidi looked at the time and exclaimed, "Dang! I'm already late for my yoga class, and I've still got to go drop off the kids at the babysitters." Heidi thanked them again and then started her pile-kids-into-the-car process. As P. and C. were leaving, they looked at each other.
"Well, how did service feel?"
"Good. Although for some reason I thought it would be more... I don't know, more... weighty."
That is a partially fictional tale. The true part is that we have had so much of an outpouring of love and support from so many people. From church, from family, from work, from friends. We really do appreciate it so much.
Yet, oh the plethora of emotions that come with being served! First, there is a part of us that feels guilty, maybe a little embarrassed, because at this point Heidi is doing so well. The chemo treatments have gone great, essentially without a hitch, and other than being a little tired on the day of, Heidi doesn't really feel much different than if she were going about her normal life. So if we're getting so much sympathy and help and support from everyone, shouldn't we have something to show for it? Don't we need to carry our weight in suffering, in nausea and tiredness and blah-ness, in order to deserve all the help we're getting?
Then there's the feeling of wanting to ration the help. If Heidi's doing so well right now, maybe we should put off some of the help now so that if/when the tough parts do come, we won't have spent all of our tokens. If we allow ourselves to be served so much now, while Heidi's still "normal", are we just burning everyone out? When she's actually throwing up and not doing well, will they exclaim "I made you dinner while you were out on the town, missie! Make your own dinner this time!"
Then there's the realization that service requires two parties, namely those serving and those being served, and service will break down if either of those parties is not cooperative. Have you ever tried to serve someone who just will not be served? Isn't it so frustrating?
Service is a wonderful thing, precisely because it endows blessings on both those being served and those serving. Yet especially in our LDS culture we emphasize serving others so much more than being served by others, that sometimes we can get this impression that serving others is the "higher" virtue. So understandably we get an abundance of willing servers and a dearth of those willing to be served. And yet it takes two willing parties.
Having been in that situation of wanting to serve someone who is uncooperative in being served, Heidi and I resolved awhile back that we would not be those people, so hard to serve. So, again, we are so grateful for your help and support, and we will continue to welcome it. We just hope that you aren't put off by Heidi's good health. Part of the blessing that Heidi gets from all this is just in knowing that people are thinking about her, and that is needed whether or not she can make her own dinner. And we love the visits.
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