No evidence of disease

I sure love the lady who wrote that last post.

Unfortunately, Liz was sick two nights ago, and I was worried it was the "new" medicine schedule. The good news is that it had nothing to do with the antibodies. The bad news is that she was first. Then Eli. Next was Jensen an hour ago. Eli again a few minutes ago. Now my gut is rumbling and I keep zoning out, staring at the screen. Hang in there, Cohen! I'm glad we have a sanitize function on our washer. Ugh.

Now for some more good news...

Liz had an echocardiogram this morning to see if her heart can handle the antibodies, since the medication can cause serious damage. I was a basket case waiting for the results (my apologies to the copier repairman who faced my wrath at work today). The breast cancer coordinator called early this evening: all heart function is normal, so we can keep going with the antibodies maintenance treatments! Whew.

I also asked the BCC if she could tell me what the radiologist report said about the CT scan. Cool words I heard were "no obvious signs of disease" on the liver. The report didn't even mention the primary tumor. And her blood work showed normal levels of liver enzymes and breast cancer markers.

No evidence of disease! Truly miraculous.

After Eli and Jensen went to bed tonight I took Cohen to Target. He wanted to buy some more painters tape so we can hang up a growth chart that he got for Christmas (sorry, Grandma, it takes me a while to get around to hanging things up -- just ask Liz about the whale picture in Eli's room). We left Target with two gigantic bouncy balls (they were on clearance!) and a bunch of really important stuff that I had not planned to buy. Oh, and painters tape. But we had such a good time just talking, looking at things together, chasing each other in the store. Kids need one-on-one time. So do dads.

Cohen read his new "Fly Guy Meets Fly Girl" book to Liz and me tonight on the couch. He read the whole thing. Well, except the part when Fly Guy and Fly Girl kissed: he started laughing uncontrollably, fell to the floor, covered his eyes, and yelled, "Tell me when it's over!"

Here's to a hopeful night of healing. And many, many years together.

Go team Liz.

What Cohen thinks of cancer. And what Liz thinks of the White Sox.

Melissa made this with our boys. We are off to great places...

The Results - Part II

200 Years.

I always have a lot to say, but I have purposely held off on writing another blog post -- until now. The reasons are mostly selfish and ultimately it comes down to my way of coping. Does it make sense? Probably not. I live this with this disease every minute of every day and the thought of going through my emotions to write them in a blog post is usually just too much. I would rather spend the time learning to deal and surviving. Fighting. Please, don't get me wrong: I completely believe this blog is essential for me, Aaron, our boys and each person who reads it. But, it's time for another post from moi. Why? Because it just is.

Ok, on to the news that we've all been waiting for. The news is good. Really good. The radiology report is not back quite yet, but Super Doc sees no evidence of disease in the liver and the breast tumor has dramatically shrunk. Yay and double yay!  Also, there are no new spots of cancer. Triple yay! The doctor is hopeful and grateful that the chemo did its job (so are we of course!). I have said for awhile I feel good except for all of the chemo crud going on so it feels amazing to get confirmation. The doctor said it's time for me to starting feeling better. I couldn't agree more. I will still go in every 3 weeks for antibodies -- the good guys that protect the cells from new cancer growth -- but no more Taxotere. Hooray! My hair will grow back, my fingernails/toenails will get healthy again & hopefully my eyes will stop watering very soon so I can wear contacts again. All very vain things I know. I am ready to begin our new life.

Speaking of fingernails, about 2.5 months ago when I began losing my nails I felt bad, sad & embarrassed. Aaron sat down one day and told me something that has stuck with me ever since. He said, "I think for every nail you lose, it's 10 more years." I know it's not a deep, profound statement, but it meant the world to me. It gave me hope again on a particularly hard day. I have now lost all of my nails...200 years. He is worried that he won't be able to keep up with me! I did tell him it would be my turn to take care of him.  :)

This is a new beginning for us. As sad as I am that our life will never go back to the way it was before March 5, 2013, I am ready for our new life. The journey to this point has been harder than I can truly express and I know the journey going forward will be full of ups and downs. I will not feel 100% tomorrow or even next week. It will most likely take a full year to feel like my old self again. I am looking forward to the point when I can send Aaron off to work and I can take care of our three boys all on my own. I wish I could today, but I know it will come. I have gotten really good at changing diapers on the couch, but I look forward to the day when I can sit on the ground again and not only change a diaper, but play cars & trains too!

The boys have been resilient through all of this and they amaze us every day. Cohen says the sweetest prayers each night full of deep thoughts and hope. Because he is our deep thinker, we have worried how he would take all of this...we had no reason to worry. He has adapted to this trying time and has blown us away with his strength. Jensen is our singing, dancing boy who always has something to say. He is 3 years old in every way. We are fully into the "I can do every thing on my own" stage which has its own challenges, but he is still so adorable that every tantrum is doable for us. Eli continues to be our mellow, happy baby. He is growing way too fast and I do wish I could go back to March just to see my 5-month old again. I miss him so much when he goes off to be taken care of for the day, but he always has a snuggle for me no matter how long it's been. I am so grateful.

My mother-in-law sent us this quote today and it sums up how I feel. Elder Boyd K. Packer said:

"Faith, to be faith, must center around something that is not known.  Faith, to be faith, must go beyond that for which there is confirming evidence.  Faith, to be faith, must go into the unknown.  Faith, to be faith must walk to the edge of light, and then a few steps into the darkness."

We have walked into the darkness, but have kept the faith. We have relied on both science and faith. We have tried our best to be lead in the right direction and to really listen to the Spirit to know which way to go. We feel so blessed to be where we are today. We know we have much to learn, but what we have learned to this point will only help us in the days to come. No matter what happens, we know we have a Heavenly Father and a Savior who love our little family and truly want the best for us. This life isn't easy, but we know there is a plan for us.

Our 14th anniversary is tomorrow and I am blessed that Aaron picked me. While we were in college together he had girls chasing him all across campus daily and I relished in the fact that he was holding my hand! I hope and pray that we have 200 more years together. Aaron is my rock. I love you, hottie!

~Liz~

Go Team Liz!

Dr. Howie and clan doing the happy dance for us

Let's availeth

We have a big week ahead, and we miss Melissa and Katelyn already. They headed home early yesterday morning, and Howie and Amanda (and their awesome brood) arrived in the afternoon.

Liz's CT scan is tomorrow morning. Then we will meet with the doctor, she will get her first dose of chemo without the nasty Taxotere (we hope!), we will get her scan results back later this week, and she will have the echocardiogram on Friday. Time to see how well these six chemo treatments worked. Boom. Crush it.

Thank you all for your service and your care. We have received so many blessings and acts of kindness, and I only wish we could thank you all individually. We have felt your thoughts and good vibes, especially today. James 5:16 says that the prayers of the righteous "availeth much." Totally agree. Let's availeth.

Man, I'm tired. I got back from a fulfilling week of classwork and homework at Notre Dame after a busy work week. This progression through December will be tough, but I reserved hotel rooms for graduation in May 2014 to lend some perspective to the challenges ahead. It is hard for me to rely on others and allow them the opportunity to serve, but my Irish classmates are amazing and willing to help carry the load. 

Howie and I took the kids to Plainfield Fest last night. Great times, lame rides, expensive creepy carny stuffed animals, happy kids. Cohen was a crack shot on the cork gun.

Jensen has had a rough day or two. He has a high fever, hard time sleeping, then he threw up all over everything late last night. Dr. Howie was good to hang out with me, but I was shocked at how fast 30 minutes passed while he and I were fluidly talking. He remembers our conversation a bit differently: apparently I had my eyes closed, and it took me three minutes to start responding to each of his questions. He stuck around since it humored him.

I'm planning on another long night with Jensen, but I hope his fever breaks. Howie's clan left after a too-short one-night stay. Our boys love their cousins, and they especially loved the sweet bouncy house we bought at a neighborhood garage sale.

Liz is doing more and feeling a little better each day. She is fighting. So I bought her a pink Notre Dame shirt with the fighting Irishman on the front. Awesome. I'm glad that she and I are a team, as we have been for the last 14 years. Happy Anniversary this week, me gorgeous lady.

Go Team Liz.

 

Wait

This week I am on campus at Notre Dame, starting five more classes with graduation only ten months away. I feel terribly guilty for being away from Liz and the boys, and strangely enough, I feel bad that I am enjoying being here. She is still having a tough time, but I am grateful for her sister Melissa and the boys' cousin Katelyn to help out. 

This week is a big one: within the next eight days Liz will find out if these last 4½ months of chemo have worked, and we will learn if her body is strong enough to continue with the antibodies. Please keep her in your thoughts and prayers.

One of my professors has a young daughter who had leukemia. She kindly shared the following poem with me because it gave her a lot of hope and strength during their times of trial. Methinks it can work the same for me. 

Go Team Liz. 

WAIT
By Russell Kelfer

Desperately, helplessly, longingly, I cried;

Quietly, patiently, lovingly, God replied.

I pled and I wept for a clue to my fate . . .

And the Master so gently said, "Wait."

"Wait? you say wait?" my indignant reply.

"Lord, I need answers, I need to know why!

Is your hand shortened? Or have you not heard?

By faith I have asked, and I'm claiming your Word.

"My future and all to which I relate

Hangs in the balance, and you tell me to wait?

I'm needing a 'yes', a go-ahead sign,

Or even a 'no' to which I can resign.

"You promised, dear Lord, that if we believe,

We need but to ask, and we shall receive.

And Lord I've been asking, and this is my cry:

I'm weary of asking! I need a reply."

Then quietly, softly, I learned of my fate,

As my Master replied again, "Wait."

So I slumped in my chair, defeated and taut,

And grumbled to God, "So, I'm waiting for what?"

He seemed then to kneel, and His eyes met with mine . . .

and He tenderly said, "I could give you a sign.

I could shake the heavens and darken the sun.

I could raise the dead and cause mountains to run.

"I could give all you seek and pleased you would be.

You'd have what you want, but you wouldn't know Me.

You'd not know the depth of my love for each saint.

You'd not know the power that I give to the faint.

"You'd not learn to see through clouds of despair;

You'd not learn to trust just by knowing I'm there.

You'd not know the joy of resting in Me

When darkness and silence are all you can see.

"You'd never experience the fullness of love

When the peace of My spirit descends like a dove.

You would know that I give, and I save, for a start,

But you'd not know the depth of the beat of My heart.

"The glow of my comfort late into the night,

The faith that I give when you walk without sight.

The depth that's beyond getting just what you ask

From an infinite God who makes what you have last.

"You'd never know, should your pain quickly flee,

What it means that My grace is sufficient for thee.

Yes, your dearest dreams overnight would come true,

But, oh, the loss, if you missed what I'm doing in you.

"So, be silent, my child, and in time you will see

That the greatest of gifts is to truly know me.

And though oft My answers seem terribly late,

My most precious answer of all is still . . . Wait."

Dinosaurland

I grew up in Denver. At least that's what I tell people when it gives me big-city credibility. But our family moved away from the Mile High City and I turned eight years old in Vernal, Utah: my home town. Dinosaurland.

We have had to miss a couple of awesome family vacations: last year because Liz was on bedrest, and this year because of cancer crud. My family all got together in Vernal last week, and to my surprise and delight, they sent these Team Liz photos to show their love and support for me lovely lady. She's starting to turn the corner, so these will surely lift her spirits. Awesome family.

Cleavinger Clan at the famous pink dinosaur in Vernal, Utah

My favorite brothers and sister

Note the Three Wolf Moon shirts, my birthday gifts to the bros

And the actual uphill Ragnar running photo from Andrea who is wearing her Team Liz angry unicorn shirt:

Andrea running the Ragnar in her Team Liz shirt

Go Team Liz.

Things adults say

I wrote down some things I said to my boys this past week. I never imagined I'd sound like such a dad:

No licking the baby.
Get your fingers out of your bum!
Should stickers be on windows?
Dancing with Doritos is not allowed in this house.
Pants aren't for hitting.

What is a different way to say that?

We do not wipe our faces with underwear.

It has been a rough week. Liz has an upper respiratory infection and nasty cough that are not getting better, though today will be day five of antibiotics. Neither of us sleeps enough anyway, and the coughing makes it worse. And she has cancer. And chemo. If you are reading this and feeling bad for her, send some happy thoughts in her direction. Gotta get over this sickness. All of it.

Yesterday after I put the boys to bed and I put my dinner in the microwave, I came upstairs to talk to me lady. Two hours later I realized that I flopped sideways on the bed and fell asleep. So I warmed up my dinner (again) and Liz and I had a great talk. In between coughs, of course. She's awesome.

It was so good having Liz's parents and sister Brenda at our home. We wish they could have stayed longer, but we were thankful for their sacrifices to come. I'm especially grateful for the food that Brenda left with us, including the fresh mulberry and strawberry popsicles she made (see big boys below). Of course, we got them some Giordano's on the night before they headed back to Idaho.

The boys have survived with me in charge. If you use a loose definition of survived. Cohen was especially sad to see our visitors leave: "Dad, when Aunt Brenda is gone, does that mean I have to eat peanut butter and jelly for lunch again, all of the time, like you make me?"

Nice.

The other night long after I put Jensen to bed, he started yelling from his room: "Dad, I got a boooooger. Daaaaaaaaad, I got a booooooooger. Dad? Booger?"
I went upstairs, opened his door, and said, "You need to go to sleep. Where's your booger?"
"I ate it, sorry dad."
"Good night."

I was most surprised this week at what I did not say when Cohen threw open his door and ran downstairs, crying through wide eyes. "Dad, I think something is seriously wrong."
"What is it?" I asked.
"I stuck a Lego up my nose and now I can't get it out."

I had instant flashbacks to my older brother encouraging me to stick Kix up my nose when we were kids, so I grabbed Cohen's nostrils and squeezed. Lego War Machine's minifigure head shot out, we wiped it down, and he went back upstairs.

I did not ask why he did it. I knew there was no explanation, so what's the point. Extra credit for the person who posts a comment with the most interesting things you or your kids ever stuck up a nose.

Another day down, many more to go.

Go Team Liz.

Happy Forfajuwhy

Liz is not feeling well. Darn chemo: neuropathy, mouth pain, swollen tongue, insomnia, joint aches, nausea. She got a new side effect last night (or she's coming down with an unfortunately-timed cold): chemo cough. Ugh. She is at least eating English muffins and cream cheese, so that's something. And she loves Brenda's chicken sauce and rice. Hopefully only five more days of the worst of it before she starts feeling better. Then if the CT scan and echocardiagram confirm that she is kicking cancer in the can, we can kiss Taxotere goodbye.

The breast cancer markers and blood work all remained normal (WAHOO!!!), so that's still good news.

We had a great Fourth of July with the boys, Aunt Brenda, Grandma and Grandpa. And Liz found the strength to join us out front for our family fireworks show. I am so impressed with her strength and resolve to give our boys quality moments with their mom. We bought a large pack of fireworks last week at Walgreens. Glow snakes, poppers, and loads of fountains. Illinois is super lame doesn't allow the big stuff, unless you're on unincorporated land around the corner from our house (that fireworks show was AWESOME). But we had a good time rating the quality of each pyrotechnic. Jensen liked the names ("They are so beautiful, Dad!").

Violet and Umbrellas
Silvery Chrysanthemums
The Golden Unicorn

My favorite was The Peppermint Twist. Sounds like a sweet dance move. It ejected small, loud crackle explosions and scared the owner of the Audi parked nearby.

Earlier in the day, while Jensen and Eli were napping, I thought I would be super dad and let Cohen do the honors and set off the first firework. I pulled out a smoke grenade that had a pull string instead of a fuse. Super safe. Right?

We went to the back yard and talked about the associated risks, which basically meant that I told him to throw it as far as he could. I should have spent a little more time on the safety discussion. He couldn't yank the string hard enough, so at the last second he placed his hand on top of the smoke grenade to get a better grip, then he pulled the string before I could stop him. Whoops. Dime-sized second degree burn. He let me know his displeasure:

"I didn't even want to light fireworks."
"Why did you make me burn myself?"
And my favorite: "YOU DID THIS TO ME!"

He thinks the blister is cool now, so we're good. I won't be winning any Father of the Year awards, though.

The worst fireworks of the night were the sparklers at the bottom of the fireworks pack. They were like flash paper and instantly were engulfed in flames. They lit up like, well, like the Fourth of July. So I decided to put my Boy Scout hat on and see what would happen if I put two packs together. My experiment resulted in a burn (Cohen let me know that his was better) and a whole lot of flashy fire. So we have tons of unused sparklers if you want to dig through our trash.

One more chemo day down, hopefully not many more. It is hard not to think about the bad while so much good is happening. But I am very optimistic about the results of Liz's upcoming tests over the next few weeks. Here's to many more Forfajuwhys with the complete Cleavinger Clan.

Go Team Liz.

If you want to beat her record, that's fine with me

Chemo #6

Something I've learned from chemo: "premeds" are just "meds" before they give you other "meds."

We are at the cancer center. The People's Court is on in the private room, though the clicking of the medicine administrator machine makes it hard to focus on high quality television. We are enjoying our sandwiches from the new shop around the corner and catching up on emails and text messages. And we are smiling.

Me lady in Cancer Center waiting room

Blood draw was a while ago, after which we met with the doc. He was upbeat, and unless something is unexpected from Liz's CT scan and echocardiogram 3 weeks from now, we'll just keep coming back every 3 weeks for her to get the antibodies (Herceptin and Perjeta). I asked him how long these treatments will continue to work. He gave the best response yet:

"I have a patient who has been on that treatment for 18 years. If you want to beat her record, that's fine with me."

That's not typical, but it's possible, and that's good enough for us. So we'll plan on kicking out the Taxotere after today, and she can get feeling better. It will take a while to feel back to "normal" but it's good news.

Go Team Liz.

All around the mulberry bush

Apparently we have a mulberry tree bush tree in our backyard. Two of them in fact. I didn't know, which means I didn't do anything to cultivate them, which means that I can say that the fruit they bear is totally organic, which I think means that I have to charge you extra because you know about my organic mulberry bushes trees bushes.

It wasn't my fault that we found out, it just took Liz's eagle eye sister Brenda to venture out back. She's quite the cook. She picked a bunch then made fresh mulberry cobbler with the assistance of sous chef Cohen. Results?

"I love Brenda's food. All of it." - Cohen

"Aunt Brenda, that is the best dinner ever." - Jensen

"Nomnomnom..." - Me

All actual quotes. 

Last day of chemo #5 today. Liz has been able to be more active than at any point since this nightmare began. Gives us hope going into round 6 tomorrow.

Eli is crawling now. And by crawling I mean he goes for 6-8 moves then plops on his face to take a break. Liz says it is exhausting to move those chunky thighs around. I think he moves just fine: he pulled himself up to stand yesterday and now it's his favorite thing. I am lying on the floor and he was standing in front of me, holding my hair. He just threw up all over my head. Awesome.

See below for the most recent four entries into the Team Liz Worldwide Photos contest.

Go Team Liz.

Things I am good at

I'm at Midway airport waiting for Liz's parents and sister to arrive from their lengthy weather-delayed journey. It will be great to have them here for a few days before and after chemo #6 (coming up Monday). Busy day at work tomorrow with negotiation-o-rama and presentations. I just have to hold it together until I can crash tomorrow night.

Liz is doing better at this stage of the chemo cycle than she has during any of the first 4 treatments. She has pushed herself to be more physically active, so maybe that has helped with the pain and sick feelings, though she remains understandably exhausted. I would even say that today was a "cancer good" day. Here's hoping she has a few more before the next round.

Big boys are in Vacation Bible School this week. Jensen hornswoggled the leaders today and convinced them that he messed his pants. So they called Liz and she trekked to VBS on her own (no easy task yet) to pick him up. Psych. He totally faked them out so he could go home. I won't let on that I'm proud of his influencing skills.

It is fascinating to watch the amazing balancing tricks people do in the airport while carting way too much luggage. If I were that mom traveling without help and with a baby and toddler and bags and carseats, I would have accepted my offer to assist. But maybe I have my creepy face on, in which case, the rebuffing of my offer would be totally rational. Judge for yourself:

Yeah, creepy. I can't blame her.

I am impressed with the skills of these traveling people. Especially so late at night. I think I have some skills too. A few examples:

Things I'm good at

• Using prepositions at the ends of sentences.
• Getting the last bit of toothpaste out of the tube.
• Shaking only one pill out of a medicine bottle. 
• Nighttime diaper changes. For the diapered kids of course.
• Doing the robot. Just with one arm below the elbow. But I'm awesome at it with one arm below the elbow.
• Singing like Aaron Neville.
• Unclogging toilets with a plunger. Note that this is the sole entry within the handyman category. But Cohen likes to tell people "my dad and I are the best fixer guys." Gotta break it to him gently at some point...

Now for the flip side:

Things I'm not good at

• Opening packages of macaroni and cheese.
• Snaps. On baby clothes, not snapping fingers. Come to think of it, I'm not very good at that either.
• Blogging coherently while exhausted.
• Lots of other stuff.

The party has landed! Off to baggage claim.

Go Team Liz.

The ice hockey contest

I don't know anything about hockey. But I could tell something awesome happened when drunk Chicagolanders launched fireworks and screamed "Woooooooooo!" (along with a lot of celebratory curse words) last night. Way to go, Blackhawks. Even MJ is in a celebratory mood.

Photo courtesy of Keri

What to say to someone who has cancer

After worrying for the better part of a week which obscure sport needed its rules explained for my writing class (final paper topic #17), I realized I should focus on something I actually care about. So I wrote a speech about how to talk to and support someone with cancer (final paper topic #19). Here we go. But just so you know, I think the first page of the Camel Wrestling paper was awesome.

Other people have great ideas and tips on this topic (cancer support, not camel wrestling). Previous posts:
          Avoiding the Stupid Comments List (3/14/13)
          How not to say the wrong thing (4/9/13)

I hope this can help someone who reads it as much as it helped me to write it.

Go Team Liz.

Cancer Needs a Hug

     When I was four years old my family went camping in the Colorado mountains. My dad took a photo when my seasonal allergies where at their worst. No tissues were available—and who has time for Kleenex when gallivanting in the woods—so I used the next best thing: my unwashed, muddy, sappy right hand. Filthy face and an especially black smeared nose. My ironic pale yellow shirt read hug me.

     My wife, Liz, has advanced stage breast cancer. Like the mountain muck on my childhood face, you can see the worries and pain and frustrations on hers. She is missing her hair, eyelashes, and fingernails. All outward appearances emphasize the exhaustion and discomfort caused by chemotherapy. She is one of many in the United States who are feeling the effects of this disease: nearly 300,000 women are diagnosed with breast cancer each year, and another 40,000 women die from it.

     When someone is diagnosed with cancer, most people don’t know what to say to the patient: they instinctively respond to the grime they see and neglect giving the hug that she needs. Saying the right thing, or avoiding the wrong one, may be more difficult if this is the first time they have encountered someone with cancer. What seem like natural or helpful questions and comments may actually be hurtful. Here are some of the best ways to engage a friend or family member in crisis, based on what we have experienced.

     First, say something. You may be uncomfortable facing the realities of cancer, but the patient needs to know that you are still there for her. If you don’t know what to say, start with that: I just don’t know what to say or how to say it, but it is terrible that you have cancer, and I am here for you. Sometimes the most helpful things are questions: Is this a good time for you to talk? Do you want to talk about it? What is weighing on your mind today?

     You might not want to bother her, or you might not know how to start the conversation. But feeling abandoned by friends can be worse than any imperfect comment. Pick up the phone, send an email, or stop by. It means more than anything. Try not to ask if it is terminal, how long she has, if chemo is hard, if it is one of the bad kinds of cancer. Remember that the patient is constantly thinking about the what-ifs, and she thinks about her own frailty each day. She needs you to speak up and be a friend, more now than ever.

     Second, show support. Contrary to what you might think, overused cheery statements are neither helpful nor supportive (it will all work out, you will be fine, keep your chin up, hang in there). These imply that a positive attitude will overcome any physical challenges. Likewise, lamenting on how bad things are (this is so unfair) only serves to bring her into a deeper funk. Cancer ain’t a barrel of laughs. And the patient might not actually get better. So find a way to be there for her and listen.

     She does not always want to hear that she is brave, she is a fighter, she is strong. She is brave simply because she is sick? So what was she before cancer? And what is the alternative to trying to fight? Be careful not to place more emotional burdens on her than she already bears.

     Asking what you can do to help is not enough. Let me know if you need anything is an invitation to never receive a call back. Be specific and direct: I am bringing dinner tomorrow night, what will you eat? Can I take your kids to the zoo this afternoon? I’m on my way to your house to do your laundry. I’ve been watching you. (Never mind that last one, that was creepy.) She already feels guilty for not being there for everyone else, especially since she has so little control over this aspect of her life. Do her a favor and allow her not to worry about some things for a while.

     Third, acknowledge that the patient’s situation is unique. It is natural to seek common ground, to share life experiences and talk about what you have learned through others. But do not tell her about someone you know who experienced something similar. If that person is fine, then the patient will wonder what his situation has to do with hers (hint: nothing). If he died, she does not want to hear about it anyway.

     Instead of saying I know how you feel, try this: I imagine this is difficult for you, I don’t presume to know how you feel, and I know everyone’s experiences are different. Do not talk about Lance Armstrong, other famous survivors, or talk about all of the people who “beat it.” And never, ever talk about anyone who died: You have breast cancer? My 84-year old aunt had throat cancer. She really hung in there until she passed away. Doh.

     Fourth, be sincere. A quick you look great can either be good or bad, depending on your relationship with the patient and how earnest you are. She knows if she does not look good. But if she is feeling unusually great, a well-placed comment can help lift her spirits. Or if she looks tired and ill, focus on something you can sincerely complement: her eyes, her smile, her hair, the grace with which she deals with her challenges.

     Chemotherapy cycles come and go. When a cycle ends, the patient will be glad to be “done” but knows that the rest of her life will include tests and scans and treatments to keep the cancer at bay. There is not really a light at the end of the tunnel, and congratulations are not really in order. All she wants is to feel well, to be there for her family, to enjoy life. But she will need you if the cancer returns. So celebrate the wins, but do not assume that her cancer fighting journey is over. She needs your ongoing friendship and support, especially when things get tough again.

     Finally, do not offer unsolicited advice. This one is hard, particularly when you are sure there is something that the patient has not considered, learned, or tried. Especially when she is first diagnosed, keep your advice to yourself, no matter how important you think it is. Mentioning that God has a plan for you or that God doesn’t give us more than we can handle just makes her feel worse for wishing things were different or that her road were easier.

     If you feel compelled to share your opinion, wait a day. Then if you still feel compelled, wait another. Still feel the same? Take a deep breath and first ask the patient if she would like to hear about the study, the article, the medication, the natural therapy, or the book. She might say no, and that’s okay: she needs you to support her decisions, even if you disagree with them. She is in charge, not you. She also needs to trust her treatment and her doctors, so any comments that make her question her doctors can cause more confusion and frustration when she really wants less.

     That was a lot of unsolicited advice. But it was free, and you get what you pay for. Just remember that the patient wants to have normal conversations, have friends she can count on, have time to laugh and enjoy life. When you have something to say, first ask yourself if it will help strengthen, support, and uplift her. If not, share it with someone else. Be there for her. Because no matter how messy things get, she will always need a hug.

Click for smiles

Here's our Cleavinger Family Video we just got from Blue Lily.
Turn the volume up to 11. (It might not work on a phone or mobile device but it works on Mac or PC.)

Awesome.

At least as awesome: Andrea's shirt she'll wear during her 7.5 mile uphill run, the first leg of the 200-mile Wasatch Back Ragnar Relay. Check out that unicorn:

Go Team Liz.

Goal disease

I'm done with ethics.

I should clarify. I'm done with the MBA ethics class. And by "done" I mean the class is over, not "I'm so done with the idea of ethics that I no longer want to have any." I still want to have ethics. Jeez, back off.

If nothing else, I learned a lot of really impressive words that other people smarter than I already knew. But I did a lot of thinking over the past few months, some of it intentional. I'm struck by a term: teleopathy. No, this is (unfortunately) not the ability to read people's minds, nor is it the ability of a U.S. government administration to spy on citizens' telephone records (like that would ever happen). Teleopathy is "the unbalanced pursuit of purpose or objectives by either individuals or organizations." It's also referred to as "goal disease" — focusing so much on achieving certain goals without considering the ethical or social impacts of such focus. BP, Fannie Mae and Freddie Mac, Arthur Andersen, Enron, Bernie... We can think of lots of business examples. People focus on a goal, rationalize inappropriate or unethical behavior, detach themselves from the situation, and make really bad decisions. Is it possible to see teleopathy in practice in our lives, even when we're focused on things that are good?

Yup.

When Liz was diagnosed with cancer I made a deal with myself: I wouldn't say "no" to my kids. Relax, I'm not talking about a parenting discipline edict. I mean that if they ask to do something with me, to spend time together, to play, throw a ball, ride a bike, anything that requires me to exert the little energy I have left, I'll say "yes."

Fail.

I've been rationalizing my laziness to play with the boys due to my exhaustion from helping out at home, watching out for Liz, getting up with the boys at night, working and studying. But even just sitting with the boys for a few minutes while Jensen plays cars and Cohen draws pictures means the world to them. They're happier, they listen better, they respond more grownuply when asked to help. And I've been missing out on these chances at quality time because of my own teleopathy: so focused on beating cancer that I'm missing out on many of the moments I can take advantage of. Time to say "yes" some more.

It was so good having Trudy at our home, and the boys miss her already. All of them do. She got Eli to talk to her (and beg...see photos below), and the big boys loved how active she kept them.

Liz isn't doing great, but one day at a time. It's a chore for her to even come downstairs once a day. But it's #5 now, and #6 is coming quickly... We're more hopeful than ever.

Go Team Liz.

Treatment plan coming into focus

We got the liver enzymes results back: nothing of concern, especially with the extra chemo workout that the lizliver is getting. Breast cancer markers results also came back, with all 3 still in normal range, and even lower than last time. Sweet <insert an obscene amount of exclamation points here>. Great news.

Liz is going into day 3 of the chemo cycle, when things typically start getting pretty rough for a couple of weeks. Aches and pains, nausea, insomnia, sore tongue and mouth, lack of appetite. Praying the good news and some higher levels of activity over the past few days will help her come out of the chemo funk faster. She's already lost some eyelashes, 7 fingernails, and she might lose some toenails as well. I figure that every nail she loses means another 10 years of survival. Gosh, I hope she doesn't lose any more, not sure we want to go much past 100. Super trooper.

We're doing what we can to try to keep things normal for our little men, but it still sometimes feels like we're spinning our wheels. The kids are doing remarkably well, though. They're funny boys, and I place a premium on a good joke. Cohen has a dry sense of humor and has mastered using a grin and an eye roll as his punchline. Jensen tries to think about what we expect him to say, then find something unexpected that makes us laugh. Case in point:

          Jensen:    I love you, Dad.

          Me:           I love you too, buddy. Do you know who else I love?

          Jensen:    Food.  (grin)

Indeed.

The treatment plan is coming into focus:

• Chemo #6 on July 1st
• CT scan 2-3 weeks later to calculate disease reduction from chemo
• If disease reduction is significant, then stop Taxotere, keep going on antibodies (Perjeta and Herceptin) every 3 weeks
• Surgery not currently anticipated/planned
• Continue kicking cancer in the shins

Thanks for all of the prayers, thoughts, service, and support. This is going to be a long battle, but one worth fighting. We're feeling optimistic today.

Go Team Liz.

At the Plainfield car show last night with Trudy, while Liz rested and Eli slept:

Chemo #5

The morning was actually really nice. Sunny and low 70's (the temperature, not the decade of fashion and music horrors). C and J had dentist appointments, neither one screamed or thrashed. No cavities. Whew. I love how excited they get for new toothbrushes.

Liz's sister Trudy came into town Saturday night for the week. She traveled in her "Team Liz" t-shirt (see Worldwide logos page). Her cowgirl and nursing skills have already paid off, as she wrangled all three boys and hung out with them in the front yard this morning. The boys love being outside, and they're already Trudy fans. So am I.

I'm still sore from riding my new bike around the neighborhood last night with Cohen. He has training wheels. I don't. Felt like it though. I won't even talk about the tiny seat and what it did or didn't do to me. Needless to say, I've already ordered a new one from Amazon.

Now we're at chemo #5. Got a private room again, can't wait to work and watch Family Feud. Blood counts look good, we'll get the liver enzyme and markers updates tomorrow when she gets her Neulasta shot. We'll try to do laps inside Target later if she can make it. She only had three "cancer good" days at the end of this last chemo cycle, so we want to push the activity levels as much as she can tolerate.

Here's hoping for a more restful, less painful, hungrier, and not-as-nauseating chemo cycle. Along with a few extra "cancer good" days. Here we go again...

Go Team Liz.

P.S. Here's Liz trying to make an angry face. She couldn't stop her eyes from smiling:

Three Stings

I've been reading Falling Up by Shel Silverstein with Cohen, just a few poems at a time. We talk about why they're funny, or thought-provoking, or ironic. Or gross. Tonight we read this, twice:

THREE STINGS

George got stung by a bee and said,

"I wouldn't have got stung if I'd stayed in bed."

Fred got stung and we heard him roar.

"What am I being punished for?"

Lew got stung and we heard him say,

"I learned somethin' about bees today."

I asked Cohen if he thought the bees could represent anything else. He paused, leaned into me, and said, "I think it's about Mom's cancer."

"What do you mean, buddy?"

"There's the guy who didn't want to do anything, the guy who thought he did something wrong, and the guy who didn't think the bad things. Mom doesn't think bad things. She decided to do everything to make the cancer go away so she can get better."

Exactly. Love that kid.

This cancer "bee" stings. It's the physical pain of the disease and the treatment. It's guilt, sadness, jealousy, fear, anxiety. It's embracing limitations and asking for help. It's a label, an asterisk. It's recognizing that close friends sometimes disappear when times get tough. And it's realizing that this is a long-term fight.

Life isn't fair. Fair is an f-word. We can't control the cancer. But we can control how we respond to it and how we allow it to affect our family. We can choose to be happy. I just need reminders every once in a while.

Go Team Liz.