waiting for my second wind

Christmas 2009 is almost over. We sit, exhausted in the midst of discarded wrapping paper and items still needing to be packed for The Harrises' Christmas Vacation: Part Deux. And even though I can't imagine how we will be ready to depart in the morning, this feeling right now beats the hell out of what I was feeling last year about this time.

booger nose

Hayden has been sick for a couple of weeks now. Coughing and hacking...Clogged noses...Steam showers in the wee hours of the night. Lots and lots of green clumps of mucus. Vomiting mucus...Running mucus... It's truly disgusting. And scary because, I don't know if you realize this, but babies don't naturally breathe through their mouths. Yeah...Mouth breathers are not actually BORN mouth breathers...That happens later. Who knew, right?

The traditional snot sucking method wasn't really working (you've seen that institutional green bulb they send you home from the hospital with). And after three or so nights of trying to sleep sitting up with the Hay, I was frazzled. And exhausted. Then...A revelation. My girl, Rachel, mentioned a blog she did about boogers and how she had come across this NoseFrida contraption. Really? You want me to suck snot from my child's head. GAG. Any other time, I would have made a snide comment and moved on, but you see, I was desperate.

The thing is...This sucker WORKS! Amazingly well! It is (as previously mentioned) an effing revelation in baby booger management. Granted I gag every time I have to clean the thing post-use, but it clears out her nose, and I haven't scraped the inside of her delicate little petunia of a nose raw in the process.

37

Last month, I turned 37.

Thirty-effing-SEVEN! Seriously? I'm not 37.

I'm 28. Don't I look it? Oh wait. Just caught a glimpse of myself in the mirror. I am definitely not looking 28.

Shit...

moment of gratitude

• Taylor
• Dylan
• Hayden
• Every minute
• Naps
• Laughter

developments

Mitchell's new chemo protocol has brought some new developments. Some good; some bad. Pluses

• No oral chemo meds
• Currently down to 2 chemo drugs rather than 3
• More non-sick time due to lack of oral meds
• Neuropathy seems to be slowly going away

Minuses

• More intense sick time after treatment days
• New and improved side effects from new infusion drug
• Hair loss has begun

inertia

• Lumpy
• Unwilling
• Exhausting
• Weighted
• Blah
• Disinterested
• Thick-headed
• Sloth-like
• Stuck

and the fun keeps coming

Mitchell's scan was read today, and the results were not good. There are 2 new lesions in his liver and the couple or three in his lung are larger (of course, we're talking mm and cm, but still). Soooo..... They're switching his chemotherapy meds but using the same protocol. The doctor did say today that the treatment goals are for Mitchell to live with cancer as a chronic disease. He said that the cancer was not curable and could not give us anything concrete about what treatment will look like long term. I walked away from the meeting with a few impressions. The most shocking to me being that Mitchell's experience with chemotherapy is long term and on-going. I don't know where I was when this was discussed previously, but I did not realize that this had become a permanent part of our reality. We are now looking at 3 to 4 month chunks of time where he will get treatment and then have a scan to see what's going on and then proceeding from there. He talked about there being lots of different types of treatments and procedures that will most likely be part of our future. I feel shell-shocked.

weather letter

Hey, Southern AZ!

Enough is enough. I'm sick of the heat already.

It is October 19th; get with the fricken program and cool down!

Sincerely,

Disgruntled and Sweaty

i love noodles

school of the home

Around here, there's been lots of talk about moms (and even some dads) pulling their kids out of the local public in order to live above the influence and school their chicklets at home. I myself shudder to think of a situation that would require me to be add full-time teacher of my kids to the list of monikers they already refer to me. Primary caretaker, medical technician, hygiene authority, therapist, nurturer, personal chef, chauffeur, life giver, social director, party planner, housekeeper, life guard, fitness coach, tutor, advocate, security officer, personal shopper, laundress, and biggest fan are already roles in which I spend quite a bit of time. I can't imagine having to also be responsible for a daily routine which would include curriculum, lectures, guided practice, independent practice, field trips, educationally-based teachable moments, authentic assessment and timely feedback. I'm not saying it can't be done, nor am I saying it shouldn't be. I just think that the world is large and full of authentic learning opportunities and attending school is, in my opinion, a significant one.

relenting

I finally relented and allowed Taylor & Dylan to share a bedroom. They are now jammed into what was Taylor's. No room for playing. No toys allowed. Just beds and dressers and night stands, thank you very much. But I suppose if it keeps them out of the guest room bed, then it's okay...

hayden in action

This was taken by Taylor (can't you tell?) on August 8th 2009.

not your mother's rant

Outsiders (and by outsider I mean any individual who does not live with the day to day reality of this disease) who tell me everything is going to be fine make me feel crazy.

This has been established. It's kind of like when you're bitching about your mom or some other family member who has gotten on your last nerve and whomever you are bitching to says, "Yeah, you're right. Your (fill in the blank with mom, brother, dad, spouse) really IS an asshole!" And something inside you screeches to a halt a says, "Hold on. It's okay for ME to say that, but it is NOT okay for YOU to say that. Back off, JERK FACE!" And now you're battling your friend who was just trying to commiserate with you. Yeah. That's exactly what it's like.

I say everything is fine to make myself feel better. Sometimes "Every thing's fine" is what allows me to get through whatever it is I'm trying to get through... But you telling me that every thing's fine somehow tells me you're minimizing what's happening in our big box of a two-story these last 9 months. And maybe you're not. Maybe you realize that the situation is precarious, but you can't say that so you use phrases that gloss over the difficulty like fluffy frosting on cake that has cracked and broken. Maybe you know that every time Mitchell has treatment, the aftermath gets worse. Worse to the point where I'm harassing him hourly to call the cancer center because he's been lying in bed for days and can't eat or really drink and he looks small and shrunken. And he's hating me because I keep asking (and I even hate myself) but I can't stop nagging him.

Then I have to step back and realize, people are going to deal with this thing the way they have to deal with it. And I'm going to either let that go or hold on to it. And remember that no one knows until it happens in their house what it means or how it hurts or how angry you can get at someone who really isn't at fault.

letter of complaint

Dear Excessive Emailer,

When I gave you my email address, I did not realize I was going to be bombarded with group emails containing your latest cake pics. I have seen a home made cake before and, while I'm sure you're extremely proud of your work, have no interest in viewing a slide show filled with your mediocre creations. If I wanted a cake that looked home made, I'd make my own.

Sincerely, me

Taylor gains confidence

Dylan continues to ramble

Taylor begging again

Now begging and playing coy

Mrs. Connelly & Dylan

Ms. Cronk & Taylor

Dylan in the midst of asking her gazillionith question

Taylor begging me to stop taking pictures.

first day of school 2009

Getting out of the car, Taylor seems as though she may vomit...Dylan's in rare form

Posing in front of the school

That's my undershirt not my stomach hanging out there...

Dylan's desk

question

How can you be a stay at home mom with multiple young children and NOT cook? Anything. Ever. Hmmm.....

Just wondering.

feeling numb

The Evan finished his bar exam today. When I asked him how he felt, he texted "feels numb". I can relate. Sometimes numb is good. It lets you catch your breath, allows you to hang out for a minute in peace. It doesn't stay for long, but it's good while it lasts.

yay

The girls are back in school. The house is now fairly quiet for about 6 hours a day. Can I get a "WOO HOOOOOO!"?

My grandma forwarded this to me today. I think it's got some lessons important enough to share.

Written By Regina Brett, 90 years old, of The Plain Dealer, Cleveland , Ohio "To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most-requested column I've ever written. My odometer rolled over to 90 in August, so here is the column once more:"

1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.

5. Pay off your credit cards every month.

6. You don't have to win every argument. Agree to disagree.

7. Cry with someone. It's more healing than crying alone.

8. It's OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn't be in it.

15. Everything can change in the blink of an eye. But don't worry; God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn't useful, beautiful or joyful.

18. Whatever doesn't kill you really does make you stronger.

19. It's never too late to have a happy childhood. But the second one is up to you and no one else. 20. When it comes to going after what you love in life, don't take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don't wait for old age to wear purple.

24. No one is in charge of your happiness but you.

25. Frame every so-called disaster with these words ''In five years, will this matter?".

26. Always choose life.

27. Forgive everyone everything.

28. What other people think of you is none of your business..

29. Time heals almost everything. Give time, time.

30. However good or bad a situation is, it will change.

31. Don't take yourself so seriously. No one else does.

32. Believe in miracles.

33. God loves you because of who God is, not because of anything you did or didn't do.

34. Don't audit life. Show up and make the most of it now.

35. Growing old beats the alternative -- dying young.

36. Your children get only one childhood.

37. All that truly matters in the end is that you loved.

38. Get outside every day. Miracles are waiting everywhere..

39. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.

40. Envy is a waste of time. You already have all you need.

41. The best is yet to come.

42. No matter how you feel, get up, dress up and show up.

43. Yield.

44. Life isn't tied with a bow, but it's still a gift.

good news/bad news

The results of the PET scan show that the lesions in Mitchell's liver are just about gone! Great news. Unfortunately the lesion/nodule in his lung is hanging in there...It is about 3 mm larger than the first PET. Granted 3 mm is so small, it's almost nothing, right? Also there is a decent reason to believe that the nodules in his lung are becoming cavitious. I'm keeping my fingers crossed. Basically, Mitchell will have to continue chemotherapy for the next 3 to 4 months. At the end of that time, there will be another PET to determine what will happen next. It still seems sketchy, but I'm learning to live with it.

again

This morning Mitchell had another PET scan; the results for which will be read tomorrow morning by the oncologist. I hate the anticipation of these appointments. The closer it gets; the more nervous I become.

letter to the media

Dear American Media Machine,

Please drop the King of Pop story; I myself am sick of it. I don't care whose sperm created which child. Nor am I concerned about a crazy person's $48,000 a month pharmacy bill. MJ's music hasn't been any good for about 20 years. And, unless I'm eligible for a hefty check resulting from his estate, I don't care if he has a will. The dude was C-R-A-Z-Y with a capital C. He's gone; let's let sleeping dogs lie. Sincerely, Me

a decade

Today's my 10th Wedding Anniversary. Weird... Then:

• Teeny, rundown Chandler house
• Regular screaming matches about stuff like calling about the dryer, planting rose bushes in the front yard, and nothing whatsoever
• Baby Taylor with Baby Dylan soon to follow
• Sasha & Ali
• Practically my whole salary going to child care
• Big, green mini-van...Happy Mother's Day
• Teaching English to snotty 7th & 8th graders
• 30 seemed a reasonable distance away

Now:

• Nice, new Vail house
• Can't remember the last time we fought
• Baby Hayden
• Working from home--no child care needed
• Little, grey compact....I got to choose
• Couldn't pay me enough to step in front of a class full of kids again
• 40 is unreasonably close

more of the same

This afternoon's appointment was a touch disconcerting. When we arrived, we were surprised to learn that Mitchell's appointment had been cancelled without our knowledge. After some scuffling around, we were able to see Dr. Brown's assistant. She was able to tell us that the scan was inconclusive. The spots on his liver "seemed a little smaller", but the spots (please remember until the moment she says this, we are under the impression that he only has one spot in his lung) in his lung "appear to be larger". One of the tumors might be cavitious, but no one can confirm this. Basically a whole lot of nothing. Mitchell now has a PET scan scheduled the morning of July 6. This should give us more conclusive information regarding the lesions/tumors he currently has. We know that Mitchell with continue with chemotherapy indefinitely. Some time soon, they will have to discontinue the oxicyllin plantin because its side effects will eventually leave him disabled, which is something we obviously don't want. More than likely he will continue with the oral Xeloda and the Avastin infusions. On the bright side, there aren't any more metastases, and they still feel it's treatable.

he looks good

Be forewarned. This is something of a rant.... I H-A-T-E it when people feel the need to tell me that Mitchell "looks good". It infuriates me. He looks good so everything must be okay. He looks good so I'm sure things aren't that bad/difficult/shitty/whatever. First of all, he has had this cancer for the last 5 years (at the very least). So the way he looked before we discovered he has cancer may not be the best measure for looking good. Second, HE'S FUCKING GREY! Am I really the only person that sees this? His hands and feet (you know the part that's supposed to be light?)...his are a weird charcoal color. And the skin is peeling and flaking off in ribbons. Looking GOOD! Do they listen to his voice when he talks? He sounds exhausted. He shuffles around some days like he's a hundred. Just because he says he's fine when you ask, doesn't mean he's telling you the truth. There's so much more that I won't even get into. I realize that people say this to be supportive or positive or whatever. But I hate it. No I'm not saying it would be better if they opened with, "Gosh, Mitch looks like shit!" I can honestly say that I don't know what would be better. I just know that I cannot skip around pretending that things aren't serious or scary or forever different than before cancer. I also know that when I look at him, he doesn't look good. He looks run down and exhuasted and frustrated and worried. How can that look good?

fingers crossed

Today Mitchell is off getting another ct scan. I think he was late in getting there as I received several rather terse texts from him which became more terse bc I was misunderstanding what he was asking me for. LO SIENTO!!!! As my brother would say, "By the by" or some other such nonsense, he's getting a scan today. Thursday we have an appointment with Doc Brown about the results. Hopefully those pesky cancer spots on his liver and lung (and that lone bugger on his pelvis) will have shrunk down. I would say "disappear", but I don't want to get greedy.

demands

update the blog

My mother keeps sending me emails with the above as the subject. "Update the Blog". Nothing in the body of the email except for her company's weird confidentiality warning scripty thing which is set off by about 7 continuous rows of asterisks. I find these emails irritating on a variety of levels. First and foremost, the fact that she uses the definte article THE to refer to my blog. Don't ask me why, but it raises my hackles. Coming a close second is the fact that MY blog has become an obligation...And pretty much everyone who knows me knows how I feel about obligations. Truth be told, I have made several attempts of late to do just that, but nothing was funny or peculiar or irritating enough. So there it went, un-updated. It is under severe maternal duress I compose this. Satisfied?

1+1=yikes

2 hours sitting by the pool (yes, we had on hats and a shade umbrella) in AZ equals one screachy, upset Hayden. The journey home was so not fun. Sorry, HayLiz.

i don't believe in that

So some dance mom (yes, I am sneering as I type this) tried to convince me that she limits her kids' tv watching to less than a couple of hours a week because she can't abide Hannah Montana and some other Disney crap show that had caused her to shun tv forever. She made the announcement in that "I'm a more diligent and concerned parent than you" tone that mom's around here often assume. I was waiting for the soliloquy to be followed by a bunch of "my kids' are geniuses rhetoric".

Fortunately I was able to refrain from making shockingly inappropriate remarks by making a snide comment about allowing my own offspring to watch as much tv as they could take for marathon sittings while feeding them high fructose corn syrup.

blech

Mitchell is not feeling well. This cycle is hitting him pretty hard. He kind of looks like he's been run over by a truck, and I imagine that's the way he feels as well. There's been lots of sleeping. Not very much eating. The oncologist prescribed zofran this cycle, but it doesn't seem to be working very well. Mitchell seems to be blaming his super nauseated state on the new meds, but I don't think that's it. I think it's just the cumulative affect of the chemo taking its toll.

six

Cycle 6 chemo today. Went fast. Mitchell doesn't think the pharmacy is even looking at his blood work any more... Is that a good or bad thing? Onset of side affects began much quicker this time around. Before the Avastin infusion was even finished, he was highly nauseated. Yikes.

great expectations

Met with Mitchell's oncologist on Tuesday. Reviewed past labs. Scheduled another CAT scan. Talked about possibilities. I think Mitchell expected Doc Brown to say, "Well Mitch!" Yeah. Dr. Brown does call Mitchell Mitch (quite exuberantly too). "If everything looks good on the scan, we'll stop the chemo!" But that's not exactly what went down. Turns out if the lesions are shrinking, the chemo will continue until they are gone. He did say he'd stop the oxycellin plantin pretty soon bc the side affects are so severe. In a word, it wasn't really what Mitchell wanted to hear.

why i heart kettle korn

• Prevents me from working on more important tasks I should be completing, e.g. laundry, packing for everyone in the house but me, cleaning, reading, working.
• Random, hard as a rock, break your tooth un-popped kernels allow me to practice my filtering while eating skills.
• Eating half a bag while hiding in my bedroom after a long day of sitting in silence brings a stone in my stomach comfort that wasn't there before.
• Love trying to dig corn husks out the space between my gums and teeth with any razor sharp object handy. Woo hoo!
• Salty-sweet flavor satisfies like nothing else can.

15 minutes

The dude who runs the boot camp I attend in the mornings has published some uber flattering pics of me (and others). Check them out by clicking here. Please note: I am wearing black shorts NOT salmon pink sweats...Don't get it twisted.

boppy time

Hayden likes to hang out in her boppy pillow, sans clothing. From her perch, she shouts unintelligible orders at us, which we scramble to follow.

how are you feeling?

This is a question I ask Mitchell probably 6 to 10 times a day. I'm sure he feels like hitting me in the head with a pot every time I do, but I can't help myself. Lately he just pretends like he hasn't heard me and goes on about his slow-going business, forcing me to ask again and again and then demanding, "Are you listening?" Clearly not.

ciclo número cinco

Mitchell endured his fifth chemo treatment yesterday. He was happy because the infusion took much less time than the last four. Unfortunately the culmination of the chemo treatments causes him to feel more poorly more quickly than before. At least he's at the half way point.

fart heard round the world

This lady totally farted during the work out this morning. It was a ripper, too. Because I am immature, I found it hilarious and was unable to let it pass unnoticed. I love it when stuff like that happens...to others!

thank you, easter bunny! bock! bock!

Mitchell and Hayden test out Easter toys.

This is fun, guys!

What's going on?

Hunting, hunting, hunting...

Taylor & Dylan hunt for eggs! Mitchell & Hayden checking things out.

Hayden seems happy with her Easter .

maybe it's not

One of the bad things about living with someone who's living with cancer (aside from the obvious difficulty that he has fucking cancer) is that it constantly hovers between you, unspoken but lurking. It's something you whisper about when people ask, hoping he won't hear. It would be so easy to crawl into some secret hole and pretend, but we don't. We push away those thoughts that come to us in the dark moments. We get up and we do what needs doing.

We are good. He feels fine. Everything is fine.

Even though, maybe it's not. Maybe he's not feeling that well, even though he tells people different. Maybe I'm tired of picking up the slack, even though I say it's okay. And I feel bad for the resentment and frustration that sometimes builds. And I wonder how many moments are left for us. And I resolve to be more aware, more mindful. And then I think maybe it isn't a big deal. And everything really is fine. And I'm making more of it than I should. Maybe I should believe him when he says he is okay. It would be easy. He says he's fine, so he is. But then I think of his silence. The times when I'll look over and find him asleep in the middle of the day, bundled in a comforter on his chair. The way he sometimes makes small noises in his sleep. And I'll look at my girls, and I can feel their worry. And I try to make things more normal. More like they were. But it's not.

my blue eyed baby girl

booty camp?

I was up this morning at 5:45, making lunches and setting out clothes for the girls so that I could attend Booty Busters Boot Camp (trust me, I will NOT be saying that title aloud).

The trainer, Brian, led us through push ups, burpees, squat things and endless jogging for an hour. After about 15 minutes, I was panting and dizzy and felt WAY older than 36.

Triumphs for today's workout: I finished the whole thing AND didn't utter one curse word.

cycle 4

Mitchell had his fourth chemo cycle on Friday. It went much the same as the previous 3. Same crazy long wait between blood draw and infusion start. His appointment was for 9:30; they didn't even begin his pre-chemo "cocktail" until after 10:30. Same marathon visit. I don't think he finished until sometime in the neighborhood of 3 o'clock. In terms of how he's feeling, it's seems to be pretty much the same. He's tired and a little nauseated. The hypersensitivity to cold hasn't set in yet, but I'm sure that will come up any day now. Overall he's doing well.

the life

Sometimes I want to lay around in a adult-sized boppy pillow, while others carry me around feeding me and clothing me and changing me at will. Discerning the subtle differences between my hungry and my tired cries.

new game

Hayden's newest game is manipulation. She has successfully connected the act of spitting out her bink and someone retrieving discarded bink...endlessly. This is a game of which she does not tire, and everyone in the house has become a victim.

not not working

We had a meeting with Mitchell's oncologist this morning to review yesterday's ct scan. Basically he said that although it's difficult to say anything conclusively, he can say the treatment's not not working. Huh? I was really looking forward to something a little more definitive. Granted, it's definitely not bad news. There are no new lesions or tumors and what was there doesn't seem to be any larger, soo.... That's good, right?

quality time

Hayden getting to know Grandma H.

future

Tomorrow, Mitchell is scheduled to have another CT scan which will tell us whether or not the chemo has been working.

third time's the charm

Mitchell had his third cycle of chemo on Friday. We thought for a minute there was going to be a repeat of last Friday's occurrences, but the right people got their butts together and all went on as planned. Of course the infusion started about and hour and 20 minutes later than scheduled so we were there until almost 6:30 on a Friday night. Needless to say, Mitch was not pleased. Hayden and I tagged along and, while the "companion chairs" they provide leave much to be desired, HayLiz and Daddy got some much needed shared nap time in. This time around, Mitchell seems to be having more difficulty than before. A lot more nausea and general malaise. As usual, anything cold is off limits.

just so ya know

Last week was supposed to mark the beginning of Mitchell's third treatment cycle. Alas, it didn't turn out that way. For some reason the kooky pharmacist put the kibosh on things because of Mitchell's blood work. Strange bc Dr. Brown reviewed those very same results with us the day before and beamed, "Mitch, everything looks great!" (Please note this is the only person my husband allows to use that abbreviated moniker.) So it was with much frustration that Mitch departed the ACC. As of now, he has been rescheduled for this Friday around noonish. On the bright side, he was able to have 7 extra treatment-free days.

the sound of silence

It's definitely strange to sit in a room with someone for close to 8 hours at a time and exchange fewer than 12 words. We've discussed the wind, the remote and holding the baby. Woo hoo!

stupid things people say: #1

• I guess your 2008 was worse than ours. Are we in competition for who has shittier life experiences?
• She's getting fat! I didn't realize a 5 week old weighing almost 8 lbs could be considered overweight.
• Oh...You look nice today! Unspoken sub-text: You usually look like hell, so I'm shocked that you've cleaned your pitiful ass up.