THEORY OF RELATIVITY

Done seeing red

It's All Relative
I have been uninspired to write for the past few weeks because of #4 chemo, which was pretty much all it was cut out to be (alleviated significantly by the acupuncture treatment, I have to note) and a really annoying sinus infection (during my "good week" too, damn) that has knocked me on my butt (or as they prefer in daycare, bum) this week. Ah well. I think back to a year ago when I had a similar sinus infection and was 9 months pregnant. That was worse. At least now I can roll over without a crane.
So goes the theory of relativity (ToR) game that I play (rather successfully) with myself-- It is has been/could be worse, ya'know? Take next week, when I start my 4 rounds of Taxol treatment. Potential side effect include joint pain and nerve damage in the hands and feet-- to which my (serious) reaction is -- "Pain rather than nausea... WOO HOO!!" (I don't even have to take the anti-nausea medicine anymore, my insurance company should be cheering as well.) The treatment is a lot longer though, 4 hour infusion instead of 2. Monday's going to be a long day. Good thing the infamous bmacpiper will be there to amuse me :)

Ground View Perspective
A few notes from the just-look-how-fast-I-can-get-to-where-I'm-not-supposed-to-be World of Wham: We went to see cardio & pulmonary specialists last week to get another EKG and echocardiogram. Getting him to sit still for these tests was no small feat. As Lisa so aptly put it, Liam "likes to be where he isn't" and wasn't real keen on being attached to wires, etc. They ended up squirting a sedative up his nose (let me tell you how fun it is to sit there and watch them do these things to your kid) and after 3 minutes he was acting like he was drunk. Eyes half mast, and watching his hand move("Laaa!") like he could see a rainbow trailing after it (maybe he could?). It was amazing. I was hoping to take some home... In any event, the tests show marked improvement from before, almost back to normal-- yeah! They would like to see him again in "a few months" to reevaluate. He's still on oxygen for the foreseeable future, which is hard, but again, ToR, he's not one of the kids in the oncology unit (ohsomuchbettermethanhim). It's almost better that he's attached to the O2 so we can have a trail to see where he's gone. The other good news is that they're going to try him with the O2 at daycare starting monday, so that should be interesting.

In other kid news, Xander and I do this dopey thing where when we say good-bye we say "nose, nose, noggin" while rubbing noses and bonking heads. (Don't ask me why/how I made this up-- I used to do it before riding my bike to work and I am finding that the helmet was a must) Sometimes we joke around and play variations on a theme: "nose, nose, eyebrow.... nose, nose, cheek" etc. Now he like to say "nose, nose, no hair." :) That kid rocks.

X prepares for his trip to the river.

Coordinated Happy Thought Alert #5: 11:30 Monday.

I DRAW THE LINE AT ANYTHING INVOLVING MIDGETS

*Note: This entry is a guest blog written by T*

Carolyn is the "nice sister" in our family. None of us are evil by any means (well, depends on who you ask), but Cari is always offering to help and always saying sorry for things she doesn't even control.

Exhibit A:

Our house growing up had an amazing hill behind it on which to go sledding. We had many good times back there in the winter. One not so good time for me was caught on videotape when I was about 5. The sequence of events happened as follows:

I slide into the picture, bravely taking on the sledding hill by myself on the inflatable inner tube. Mom is standing about 10 feet down the hill, in position to stop me from careening down recklessly into the large ditch many yards below.

Mom: "I'll catch you! Ooof!"

Oops, the tube bounced off her legs and sent me in a wild spin down the hill towards sure disaster. The whole family was out on the hill in various spots. As I spun out of control, eventually tumbling into a bush not far from the bottom, an interesting study of reactions took place:

Lisa: *consuming handful after handful of snow at the bottom*

Mom: *laughing*

Dad: *calmly continuing to film as his youngest somersaults into shrubbery* (hey, the camera did not shake even one time)

Cari: *dropping her own sled, running up the hill to save me* When it was obvious she was not going to reach me in time, she helpfully yelled out: "She lost a shoe!"

Exhibit B:

Cari was the oldest of three, and therefore sacrificed herself for Lisa and my eventual social lives. She had a curfew of 10:30 p.m. and I had no curfew. Enough said.

Exhibit C:

It was my duty as the youngest sister to be a pest. Therefore, I would do things like read Cari's journals and spy on her with her boyfriends. The fact that she didn't kill me for such actions says a lot.

Exhibit D:

A few years ago, Cari and I went backpacking in the Sangre de Cristo mountains. It was my suggestion to take the straight uphill route, which led us into an endless route and torrential downpour. We could've turned back, but our mantra was "Must press on!"

Eventually, we made it to a flat camping spot, but the rain didn't stop and the winds picked up. Somehow we got the tent set up, Cari's lips were blue, but it was no thing to her. Then came the challenge of going pee. You see, this urinating on the spot thing is easy for guys, but women have to make a little more effort in the wilderness. In her infinite wisdom, Cari came up with the idea (and this may be too much information) of one person squatting and sticking her butt out the tent door, while the other person holds on to her arms so she doesn't go tumbling out into the mud pantsless.

That's dedication, folks.

I do have a point in presenting all this evidence. The "nice sister" is so generous to everyone else, that she has a hard time accepting others' returning the favor. What I have seen over the past few months has been remarkable. The kindness by her "village" has left her no choice but to give in and be propped up by infinite support. She, alone, has the will and the strength of character to make it through each day of this process. But the generosity shown by you all (and I mean all of YOU reading this entry) makes her an overwhelming favorite to soundly defeat this thing.

I still don't think it's easy for Carolyn to ask for help, but she's improving. She asked me to do this guest blog, and said, "I could pretty much ask you to do anything at this point, huh?"

Just about. But I draw the line at anything involving midgets.

I FEEL PRETTY (notsomuch)

Chemo #4 went fine yesterday and I've been enjoying taking advantage of all of your suggestions of distracting things to do-- thanks (keep 'em coming)!! I've also been pondering the suggestion to, (paraphrased badly by me) observe the experience with curiosity, experience it as it is, with no need to label. Sadly, I've failed miserably, enough so that I've come up with (new words to) a song. (Thanks to T and Carol for help with the lyrics).
Sing it with me now.

Sung to Tune of "I Feel Pretty" from West Side Story

(ME)

I feel shitty
Oh so shitty
I feel shitty, not witty, nor bright!
And I pity
Any girl who feels like me tonight.

It’s not charming.
It’s disarming,
It’s alarming how I snarky I feel!
And so icky
That I hardly can believe I’m real.

See the woozy girl in the mirror there:
Who can that sick bald girl be?
Such a scary scar,
Such a tired smile,
Such a perfect head,
Is it really me?

Though I’m dizzy,
And so queasy,
I know to this challenge I’ll rise,
For I’m loved
By three pretty wonderful guys!

I feel lucky
Oh, so plucky,
For my friends are so awesome you see,
A whole village
Has been organized to assist me.

(VILLAGE)

La la la la la la LA la la

(ME)
I feel ditzy

I feel tired
I keep blogging to help me sustain,
Know your comments
Keep me from going insane.

(VILLAGE)
La la la la la la LA la la

(ME)

See the pretty girl in that mirror there?

(VILLAGE)

What mirror where?

(ME)

Where could that attractive girl be?

(VILLAGE)

Which? What? Where? Whom??

(ME)

Still a pretty smile,
Still a fighting spirit,
Still a little nuts
Still the same ‘ol me!

(VILLAGE)
Such a pretty me!

(ALL)

It’s been stunning

And amazing,
How this village has kept me so strong,
I’m so sappy
That I’m now bursting out in song!

MISALIGNED MERIDIANS

Needlework
The trip to the acupuncturist/chiropractor was fascinating. She started out by checking my range of motion in my arms and my neck & back (they're fine, said I)... during which she pretty much started laughing at me. Apparently, I really don't have good range of motion in my left arm (from the surgery) and she touched this spot on my neck ("does this hurt?") and practically dropped me to my knees in pain. Who knew.
Then she tested my meridians, which has to do with the 7 (8?) acupuncture pulses but involves electronics and sounds like a metal detector. My left and right energies are misaligned. "Are most people uneven?" I asked her. "No." she responded. (...dammit). She did some pressure point stuff then took me into a back room to do the actual acupuncture. Some in my feet, legs, hands, arms, and (get this) ears. Some of them stung more than others going in (depends on the energy at the point, she told me) but really not bad at all (less than a shot-- especially the "this will hurt" ones I've been getting lately). Then, right before she left she told me "the needles will hurt if you move." (whaaa?) ...after which my nose started to itch furiously. I lay there for about 20 minutes in the dark and quiet that was it. Much more pleasant than say, an MRI. I definitely felt better afterwards, but I'm unclear if that's due to the acupuncture treatment or the fact that I was one more day away from chemo treatment. We'll see for sure next week. But in any event it was very interesting and I can only describe what I felt at the whole process as amazement that people know this stuff and wonder at what else is yet to be discovered about how this whole mind-body-spirit thing all works. Complimentary medicine indeed. I'm glad I went.

In the News
Breast cancer has the huge advantage that it is researched so extensively that the infamous "they" have discovered that not all tumors are alike. For example, I have what's called a hormone-receptor negative tumor which means that post-chemo drugs like tamoxifin won't work for me (although they really help the 2/3s of women who have estrogen receptor-positive tumors). ER negative folks typically have more aggressive tumors and it was also thought that they (we) have a worse prognosis. However, you may have heard the good news on NPR this past week:

Chemo Succeeds Against Hard-To-Treat Cancer
Study Focuses on Tumors Not Fueled by Estrogen
CHICAGO (April 11) - Research offers hopeful news to women whose breast cancers are typically more difficult to treat: Modern chemotherapy means more of them will survive than previously thought

Basically, exactly the chemo treatment I'm getting (dose dense) has been shown to reduce the risk of recurrence as much as 50%. Rock on. That makes it a little more palatable to feel ick.

Dodging Bullets
When I was in Navy ROTC one of my summer training stints involved a week in the Marines. (I know, it seemed surreal to me as well). The hardest day involved climbing up ropes with full gear on (during which I made it about 2/3rds of the way up and then fell flat on my back), storming a mock town, and low crawling under barbed wired while gunnery sergeants screamed at us ("Stay down maggots!") and shot (hopefully well over) our heads. I remember thinking after I fell into bed exhausted and bruised from the 22 hour day that if I had known ahead of time what I was in for I didn't think I would've been able to get out of bed that morning. Hmmm. (Good thing I have a 3-year old anti-snooze alarm).

Happy thought alert #4: 10:15 MST.

I CAN SEE THE TUNNEL

My Mom has this amazing gift for inadvertent malapropisms-- i.e., mixing/messing up common expressions. Some classic examples: "Never bite a gift horse in the mouth," and "I wish I was a mouse on the wall." I have inherited this talent (e.g., "There's a light at the end of the rainbow.") In any event, my sister T uses the expression "I can see the tunnel" (on purpose, unlike our mom and me)... This is where I am. I don't quite see the light at the end (which, as carol keeps reminding me, may be a train, so maybe this is a good thing) but I'm well on the path (enough that I can't see the way back.)

Assignment TigerOxers: (new word of the day)
Monday is chemo #4. This is my last round of Adriamiacyn/Cytoxan (after which I have 4 rounds of Taxol). From what I've heard, the "AC" is worse than the "T" part as far as feeling icky goes, so next week should (hopefully) be the worst of it. Honestly, I'm dreading it-- especially considering how cumulatively worse the experiences have been so far. So, dear readers, I need your help. I need you to recommend (specific) fun things to do that don't involve much focus from me (e.g., movies-- good, books-- too hard). It'd be great if you want to even plan/join me... just know I won't be good company.
How's that for blatant pleading? But it's come to that. Pressure's on.

Alternative medicine:
My personal contribution to lowering the feelin'-crap-o-meter for next week involves (beyond just giving up and actually planning to take the whole week off of work ahead of time) some attempts at alternative/complimentary medicine. For example, I'm going to try acupuncture. I have my first appointment tomorrow, and another one next week. (reasontobehappy#48,576: not afraid of needles). I'm also going to try some "special" brownies. It will be a week a firsts. Should be an adventure.

A few more "things you learn":

• I now have chemo-induced anemia (low red blood counts), so now I qualify for (and am receiving) another bi-weekly $6,000 dollar shot in addition to the one that is doing a great job keeping my white blood cells up. At first when they told me I was surprised, because I didn't feel that tired-- but the nurse pointed out that maybe I'm just used to being tired all the time because of the kids.
• Once I read the handout about chemo-induced anemia I suddenly got many new side-effects, including dizziness and shortness of breath that were (shockingly) listed on the handout. I will not be reading anymore handouts.
• Before, my eyes were pretty much brown. Now that I don't have brown (ok, any) hair, they're pretty much green.
• I wax nostalgic about legacy hairballs I find around the house (which I will find from now until eternity, apparently)
• Insomnia is a chemo side effect I didn't know about until I found out first hand this week. It was good to learn I wasn't going insane, since I'm pretty much exhausted most of the time and couldn't understand why I just couldn't go to sleep. Ambien Rocks.
• At first I just scheduled acupuncture for after chemo, but it was pointed out to me that it's not like taking a pill, so I signed up for an appointment this week as well while I'm feeling ok.
• Liam is remarkably unphased by his O2 leash and giggly as ever. Maybe even more so. (Maybe because he can breath now?) That baby is one huge tickle button.

RESILIENT AS A COCKROACH

...I think I've found my new "animal".
Things are tracking back to "normal" here at the Nobel-Rudolph household (wherever that may be). The Liam-sitting schedule is filling up incredibly well (our village ROCKS) and he is pretty much back to his now-crawling, squealing self (plus the oxygen leash, which doesn't seem to hinder him much). I am finally bouncing back from this last chemo round-- unfortunately, it hit me harder than the others (as expected) but I'm looking forward to my "good week" here shortly. And unanticipated upshot to the whole wham situation is that I've completely lost any self-consciousness I had about my lack'o'hair. Again, it's all relative. I must say though, we get some incredible lookaways when we're out and about-- sweet liam and I, with his O2 and my bandana. It's like the Red Sea parting at times. (dearLORDwhat'swrongwithTHEM?!). When a kid at daycare asked what was wrong with Liam's face (he has stickers on his cheeks to hold the tubes on) the teacher sagely said "everyone has things they need to deal with, this is just his thing right now." Fair enough.
I've heard a lot of expressions lately, the two most common being "When it rains it pours" and "God doesn't give you more than you can handle." (Although someone corrected me on that second one, in that it should be "God doesn't allow more than you can handle, since God doesn't give people illnesses"-- seems a little biased that God can grant miracles but shirks the sickness rap, but I digress.) Good to know, really.
Somewhat not surprisingly, I've been hypersensitive to platitudes and the how are you doings from people who aren't really "in the know" (and that doesn't count you, dear readers). I know it's not fair, people really do mean well, but it's kind of like when I was really pregnant and would say things out loud and think, "was that my outside voice?" (let's just say I wasn't known for my tact at 36+ weeks, and apparently that saracasm demon wasn't exorcised with the baby...) A fun-for-me (if not exactly fair, but hey, they asked right?) way for me to deal with this is to try to make up something that would make them never want to ask me again (granted, I could tell them the truth, but it's more entertaining to be imaginative.) For example:
Them: "How are you?"
Me: "Well, I only vomited for 4 hours yesterday and that was good because it distracted me from the boils, which, by the way, you should see them, they're quite beautiful, really..."
I guess we all deal with things the best we can, day to day, and dark humor is where it's at for me right now (although images of the aluminum foil deflector posse has really helped this week- thanks :) ). On a lighter note:
Things to be happy about:

• Flordia won the National Championship (which T attended, BTW) which bodes really well for the power of her lucky underwear, from which I assume all powers will now be redirected on me.
• Mike and Andrea come back from their amazing journey to antartica today. How we've missed them!
• Liam thinks my fuzzy head is hilarious. He loves rubbing it and I can get the biggest guffaws from him by putting him on top of my head and tickling his belly. Granted, he gets a bit of road rash on his tummy from the stubble, but everyone has their things they need to deal with, no?

I NEED ANOTHER ANIMAL

I don't know if "Brave as a Tiger, Strong as an Ox" is going to cut it for me anymore. I need to add another animal. Potentially a zoo.
We've had a rough go the last few days. (Apparently I've picked up Jim's talent for understatement after being with him for so long.)
The plan: I actually planned my entire chemo schedule around this past weekend. I wanted to be as well as I possibly could because I had a pre-diagnosis Leadership Council meeting I was hosting in Denver scheduled for last Thursday and Friday. Leadership Council is a group of 16 people from across the corporation who get together at different locations around the country to develop presentations for our Executive Council (CEO, etc.) Basically, it's like the Apprentice without getting fired. I'm really glad to be a part of it and absolutely love meeting/hanging out with this group of 15 amazing people. It was extremely lucky that the meeting was planned in Denver, given my limited traveling schedule (I missed the last meeting in Miami after my surgery). In any event, 4 of them were going to stay for the weekend and come up to the condo. We had the kids set up to be with sisters/grandmas from Thurs-Fri. Jim and I were going to go out with the group to the Broker Thurs night, head up to the mountains Friday and have a kid-free weekend of hottubbing and skiing. Looking forward to this has been a beacon for me.
The reality: I left about 8 Wed night to stay in a hotel downtown so I could get to work before 7 to prepare for the meeting. Liam was fine. That night, however, he really had a rough night and Jim was up all night with him because he was sick and having trouble breathing. Thursday Jim brought Liam into the Pediatrician and they were sent to the hospital-- again. I was unreachable in my meetings, so jim had to deal with this all by himself. By the time I finally got in touch with Jim Thursday afternoon, Liam had been admitted into the hospital under extreme pressure from the doctor (to the hospital, not us). Liam has been into the emergency room 3 times before and sent home because he seems fine, and the dr. really wanted to get to the bottom of it. I was in the middle of this big meeting (which of course I could have left) but it's a really bad idea for me to be in a hospital, given everything. Thursday night Liam had a fever of 106 (I didn't know it could go that high).
Friday, Sat and Sunday were a waiting game of trying to get the specialists to see Liam (pulminologists, cardiologist) and get him in for tests (chest x-ray, EKG, echocardiogram). Jim got to where he could predict Liam's oncoming fevers by watching his pulse rise beforehand and they could keep them under control with tylenol and advil. They ultimately think he had the flu (Type B, because he got the vaccine) but that didn't solve the problem of why his pulseox always goes so low. I was able to go over Friday morning, Sat night and Sunday, and add a mask to my sexy bandana (amazing Liam could recognize me). My mom and Carol were there all day Friday and Saturday. I can't tell you how amazing they are. Jim would never leave because he wanted to make sure he talked to all the doctors. He is beyond amazing. I ended up going up to the mountains on Friday night and coming back Saturday afternoon. Admitting that I needed to do that for myself was really hard, but unbelievably necessary.
Finally, after all the tests, the doctors concluded that Liam has secondary pulmonary hypertension. Basically, his lungs have never had the chance to recover from some nasty "viral pneumonias" he got in Nov-Dec and although he can compensate when he's well, when he gets a cold, his lungs basically shut down. The long and short of it is that he has to be on oxygen for the next 2 months or so to give his lungs a chance to get better. The most important thing is he will get better, and ultimately it's a "good" diagnosis given some of the other things they were considering. The logistical challenge is can't go to daycare.
When I first heard this news I couldn't think. It was just too much. Once I found out that he could crawl and learn to walk and that it would be a much bigger pain for us than him it was a lot better. I'm basically home every other week anyway and I have all this time off. Family and friends are already mobilized... they just have to be deployed now, I guess (back to the battle thing, but hey). Ultimately, maybe it will be easier because now there will always be someone at home, to help take care of me and to cover if the kids get sick.
We're going to prove this "it take a village" thing.
I'm off to chemo #3 in a few minutes. Luckily I'm feeling a lot better from the cold I caught last Thurs (how's that for insult to injury?)
Jim says what you can do is do something that you wouldn't normally do that makes you happy ("read the paper before you go to work, buy a sports car") and send us a long some of those happy thoughts.
We will work it out.