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?

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.

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.

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.

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.

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.

My Thoughts: 1 Year Left

It's 12-12-12. At 12:12 today I'll be celebrating with a chemo party. Go chemo, go!

I've been having a hard time writing this post. Sometimes I get a little overly excited by my own “new” ideas and then I feel like I have a lot to say. But as I read and re-read the wonderful comments and emails I've received on this topic, I realize that each of you already knows exactly what you would and should do with your life if you were facing death. For most of us, discovering those insights is largely a matter of pausing long enough to think about it. In truth, I'd love to write this post by cutting and pasting from your responses. Yet, I personally find it uplifting and inspiring to hear the insights of others in the context of their personal life story. Those universal truths may not be “unique”, but they are very special in the life of the individual who has freshly discovered them. And when I connect with someone who is sharing their experiences and insights with me they are also very special to me. So with the understanding that what I write is not unique or new, I will attempt to share a piece of my personal story with you, hoping that it will be a reminder to all of us of what we already know...

When my mom got sick with her final round of cancer back in March I became kind of obsessed with trying to figure out what I was supposed to do with “the rest of my life.” I was 33 and my mom was 60. I could see that her time was slipping away and I felt like mine was too. I kept telling Anthony that I felt like my life was half over, but I didn't know what I was supposed to do with the second half. He tried to console me and suggested that I go on a vacation or find a good hobby.

The month before my mom passed away I expressed the same concern to her – that I felt like my life was half over and “what should I do with my next 30 years?!” My mother, knowing the over-planning type-A personality that I am, counseled me to not look quite so far down the road, but to just take it a few years at a time. Later that night, as I was praying about my question and my mom's advice, the idea came to me, “Are you being refined by the experiences you are having?” I realized that I am. Slowly, but surely I feel like I am improving as a person. I may have had some of my “plans” come to pass (like a college degree and having my own family), but I could never have planned on the experiences and the people that have come into my life and changed me for the better.

Still, I continued to wrestle with this question. Vacations and hobbies and waiting for the kids to get in school so I could have spare time circled in my brain, but failed to feel meaningful. What was I supposed to do with my life?!

Then my mom died. And I felt like I was picked up by a freight train and propelled along a speeding and wondrous journey. Physically, mentally, spiritually, emotionally I was experiencing so much so quickly I could hardly keep up. I found my cancer two weeks later and the bulleting train discovered warp-drive. In fact, it was so overwhelming for me that the muscles in my back locked-up to the point that it was difficult to walk (or even sit or sleep). (Actually, I'm still trying to recover my full mobility, though it's mostly there now). Following the encouragement of a friend, I spent a few of my sleepless nights recording some degree of the experience. It's way too stream-of-consciousness to plop it all down on this blog, but the point is that these past few months have been crazy difficult and strangely wonderful.

Now here it is only 3 months after that conversation with my mom and these days I really hope that my life is only half over and that I really do have 30 more years of learning and growing ahead of me! And now I have no choice but to take it just a few years at a time. But in facing death, I discovered the answer to my question: What am I supposed to do with my life?

As I said before, my answer is not unique, it is not mind-blowing. It is something we all strive for, but too often get distracted from. It is the same answer that lies at the heart of all the thoughts and comments that I have received from all of you on this topic. It is simply this: To Love Without Fear. Those are the words that came into my mind, but I've heard it expressed a few other ways recently: “Live life with gratitude and love”, “I have been placed on this earth to learn how to love people”, “I would do those things that allow me to love”, “I would record my love”; or to quote my favorite play, Les Miserables, “To love another person is to see the face of God.”

That is the wisdom. The practice of love comes in dozens of small and often challenging ways. I've loved your ideas - and thank you for sharing them - and have integrated them into my own list of ideas:

• Leaving love notes and videos for your kids
• Making a blanket or scrapbook or other keepsake for your kids
• Going on a special vacation with your spouse
• Leaving love notes for your spouse
• “Getting things in order” like your will, insurance papers, bank accounts and passwords (without losing too much time to it)
• Writing your personal history
• Recording your testimony
• Writing, reading or sharing the history of your parents and grandparents. Especially those who have preceded you in death. Wouldn't it be nice to know them when you meet them in heaven?
• Giving up obsessions with housekeeping, facebook, blog reading, TV watching, etc to actually focus on your children and spouse and be present in the moment. I think those things have their place: Housekeeping – as one friend put it – is a (sometimes mundane) way of serving and loving your family; facebook and blogs give us a chance to uplift and encourage each other; and it can be bonding and relaxing to share a fun TV show with your spouse or kids. But... I have found myself sometimes chewing out my rowdy kids because they were distracting me from posting something on the computer... and the subject of my post?... How cute and wonderful my kids are! Sometimes we lose focus.
• Using right now to build up your child's confidence about whatever they are doing (someone else can harp on their stick-figure drawings, but only you can convince them of your unconditional love).
• Saying “I love you” more often to more people.
• Reconciling any ill relationships (as much as the other person will allow it), because there is no time left to do this when a person is dying.
• Doing fun, unique things to create memories (like family vacations, or small family outings)
• Creating and fostering traditions that will last in your family's lives after you are gone and will remind them of you.
• Putting less on your “to-do” list so you can be open and receptive to “to-do”-ing what's truly important each day.
• Making sure you are prepared to meet God. That one opens up ALL the rest of the love you can hope to give and it is the quest of a lifetime. But even if you feel pretty good on that point, consider when was the last time you actually checked in on that one?
• Living life as normally as possible (why else did God give us life in this manner), but with more gratitude and more joy.
• Finally, doing all of this stuff (even I have to make specific goals and deadlines to work on these things and I am highly motivated right now).

And if you have 15 or more years to go?

• Make a HABIT out of all of the above!
  • If you keep a blog or a journal – awesome! Anthony pointed out to me that even if I didn't have any time left to do anything, thanks to my 6-year-old blog, my kids already have lots to read about me, our family and my love for them. That's such a comforting thought.
  • Be sure you have regular installments about each child's personality and why you love them (birthdays are perfect times for this). And regular installments about your spouse and why you love them (anniversaries are perfect for this).

Ok, I have to end this post with a confession. There is a comment I get quite often, both verbally and in emails, and I have to admit it makes me cringe and laugh at the same time. It is some form of, “Wow, you are so brave.” I cringe because I am reminded of the seriousness of my condition. I laugh because I honestly feel like I'm going to be around to hear that comment for a long time! Yes, it is brave to go through cancer treatments and yes it is definitely brave to wrestle with your own mortality, but my dear friends, we are ALL going to die. When is a better time to wrestle with my mortality? When I'm 90? When I'm rolling end-over-end in a freeway collision? I'd rather have time to appreciate and make use of my time rather than lose my life suddenly. Maybe I'm not the brave one, maybe I'm the lucky one.

I've Still Got It

My hair that is. I went and CHOPPED my hair off because I was GUARANTEED to have it fall out. Then I find out that with my lower-dose once-a-week treatments my hair will just thin out instead. With my thick crop that probably means I'll just have normal hair by the end of this.

So I was pretty nervous about getting my hair cut. I haven't cut my hair shorter than mid-neck length since I was in Jr. High. But I figured it had to be done. I have to confess, I woke up the morning of my planned hair cut and felt quite anxious about the whole thing. This was 2 weeks before chemo started. Somehow the haircut made the cancer feel very real and very scary.

Now for a cute story. I was also nervous about my haircut because my adorable son is very attached to my hair. Stroking hair is for A as thumb-sucking is for my daughter R. It soothes him. I often lay down by him at bedtime telling him stories while he plays with my hair. I was concerned that getting my hair cut might feel like a personal affront to him. I was also worried that it might make my cancer real and scary to him. He is keenly aware of the fact that Grandma just died from cancer and the major visible sign of it was that she lost her hair. My poor boy. My poor me.

But as with anything scary (and with encouragement from family and friends), I just kept moving forward.

Me and my older sister (my "twin") right before.

The big reveal!

When I got home from the haircut I was definitely unsure of having my hair be SO SHORT. After years and years of longish hair, I didn't look like "me" anymore. It felt fun to try something new, but could I really pull off short hair?

A was upstairs playing with his legos and came downstairs.

Me (trying to be casual): "Hey buddy. Having fun upstairs?"

A (without a hesitation): "Wow mom! You look so beautiful!" Followed by a big hug.

That was all I needed. If anyone has an honest opinion to give of my hair, it is A. And HE loves it. And therefore so do I. Furthermore my loving husband tells me at least once a day some variation on, "You're beautiful" and "I love your hair like this."

Four weeks later I'm still getting used to it. I'm using a ton less shampoo now and my styling time has dropped from 30 minutes to 30 seconds and I no longer put my hair in a ponytail everyday (because 30 minutes is too long). And you know what? Thanks to the love of my boys, I do feel beautiful!

For fun, here I am (with Marisa) trying on wigs at the wig store. Can you guess which one I chose?

One more comparison. Headshots (taken by my dear friend Amy of Tilt Photography) in October (before I knew a had cancer) and November (after 2 chemo treatments).

Look! Long hair or short... I'm still smiling! Maybe even a little more than before.


PS. I'm still going to write a reply to my previous post, but I have been focused this week on making personalized Christmas gifts for my kids. I finished last night, hooray! (Just in time for today's chemo treatment.) I have a lot to say on that post and want to take time to write it thoughtfully. In the mean time, you should read some of the comments I received on the last two posts - they are very insightful. My friends, thanks for your input, I have loved receiving of you and learning so so much.

PSS. I love discovering a good laugh - especially these days. Check out this very funny blog post that had me chuckling last night.