Wednesday, May 27, 2009

Mimi really is Superman

My Mom was diagnosed with small cell carcinoma last October. Lungs, liver and nodes riddled with this crap. She's been on some of the nastiest chemo for 10 sessions spaced every 3 weeks. We've seen miraculous results.

Her latest PET scan shows one tumor at 1.2-1.3 cm in the left lung with an astounding "ZERO" cell activity. In PETS, this figure is called SUV (uptake value). Her's isn't even registering anything at all. Everything, as in EVERYTHING else is gone.

So, she's Superman. And in honor of Mom, I've changed my cell phone ring tone for when she calls me to this song by Hannah Stinkin Montana because it's just too appropriate to pass up.

I spared you all looking at HM's video and instead, included a video with the lyrics (slightly butchered due to the illiteracy of the original YouTube poster :)

Cheers Mom!!!!!!!!!!!!!!

Tuesday, May 26, 2009

Just stunning


It's quite difficult writing about this particular topic because family and friends read this blog. But I think the "leftovers" after treatment are just as valid, if not more, than the horror of going through treatment. There's a big gaping hole in the understanding of how an individual feels after treatment. So if anyone is feeling overly sensitive, don't read further.

Aftermath of treatment encompasses just about everything a person can imagine. The pain doesn't miraculously go away - in fact, the aches are just beginning. The fatigue gears up and is measured against the incredible fatigue of chemo. Motivation is low, despite having every reason to get moving. Hey, life has passed you by for 10 months - why are you sitting on your butt?

It's too hard. Way too hard. I see why people give up. I understand that now better than I did at the beginning. Because the healing hasn't even really started yet and it seems like another mountain to climb. I feel ages older than my 41 years.

I struggle to explain this to Bill, who inevitably aims to refocus my thoughts on a more positive trail. It has nothing to do with reinforcement from other people; it has to do with me. I get overwhelmed quite easily now. I get tired. I have no stamina anymore. If I do get a burst of energy, I blow myself out for 2 days after. It seems like an endless cycle.

I don't feel depressed nor do I focus on my situation all day, every day. I never have. However, the masses need to realize that people who've been treated as I have been face their mortality every day. Every day I wake up thinking of my ruined chest and wondering if my aggressive course of treatment got all the cancer. Living with that heavy weight on my shoulders isn't easy. It's fine to say "focus on the positive" but in reality, it seems many are incapable of handling me just airing my anger at my situation. Which, I will point out, is my God given right.

I have had two people ask me in the past few weeks if Jackie is my granddaughter. I'm 41. 41 and I've had to deal with insensitivity from strangers, family and friends. I am aware that it's not intentional. But there it is. It's these comments that plague cancer survivors who are struggling to get back on their feet to lead a somewhat normal life among the pieces left behind after a cancer diagnosis.

In this struggle to find some normalcy in what is left, it shouldn't be a given that I should accept insensitivity from anyone. I haven't expressed my anger throughout this whole thing, nor have I struck out at anyone in anger when I've felt my very worst. I've conducted myself just as I would if I was normal. The hitch is that I'm not normal anymore. But the vast majority of the people I deal with are normal and they are failing woefully at being kind and caring influences.

So I sit here, not feeling any better, not feeling any worse. Just wondering if my course of treatment was enough, if I need another surgery and when, and if I'll have enough energy to empty the dishwasher. No pressure, just trying to find a way to meet life head on again. And finding that so hard to do.

Thursday, May 21, 2009

Steffie, Bill and Jackie

Steffie said something to me the other day that astounded me. She said she believes it's a good thing that I got cancer because we all realize how important life is. She firmly nodded her head when saying it and then tooled right out of the room. She holds it as truth, clearly.

She's a perceptive child - always has been. At 12, she's developing into a lovely little lady. But the outside isn't nearly as important as the inside. One charming and heartwarming trait lies in her kind heart. She's always been a softie, more sensitive than anyone else I know. I hope she keeps that trait with a little armor around her to protect herself a little through life.

Sometimes I wonder why people stumble into my life. I have the answer in Bill. His personal strength is astounding. He has handled the rocking of his world with kindness, compassion, and abundant love. He's tolerant of my pain, moodiness, and fear. Nothing makes him angry. He doesn't get annoyed at me when I feel down or pissed at my slow progress. He lifts me up - always. My Billy is truly a fabulous man, wonderful husband, and great father.

Jackie has handled this all so well for a little tyke who doesn't really understand what's going on. We simply tell her that Mommy has an inside "boo boo" and she snuggles close. I can tell at times that she worries because she'll ask me about my day when she's gone to school. She's also experiencing some serious anxiety when Steffie isn't around. Whether this is a product of my illness or normal 4 year old drama, I'm not sure. We soothe her and she moves on.

Jackie seems to want everyone to tell her goodbye before they leave her. Especially Steffie. Maybe somewhere in her head she knows that Sissy will take care of her if Mommy isn't around. Despite the in-fighting and yes, they do bicker alot even at 4 and 12, Jackie knows she can go to Steffie for comfort. I'm glad she knows.

We parents have the job of making our kids grow up friends as well as siblings. It certainly is possible to grow up in a home as strangers to the people we live with - it happens all the time. Not my girls. They need to be strong individuals, strong in character and in the heart and supportive of family. My girls need to be here for each other if they ever have to face the beast if I'm not around.

Tuesday, May 19, 2009

I'm back

I've been in a real funk.

Tata removal, chemo, rads, and recovery has really got me bent.

I went for a bike ride today and came to some profound conclusions. I can't ride my exercise bike. I needed to ride my real bike simply because it gets me somewhere. And herein lies the problem with recovering from treatment.

It's too damn slow.

I'm not a slow person. I'm type A, mach 2 all the time. I hit a brick wall a few weeks ago and it was like a heavy weight came down on me. I want this to be over. I'm sick of this. There's no progress. I measure progress in the millimeter size increase of each eyelash and hair strand. It's really annoying.

I want leaps and bounds - not baby steps.

So I spring-cleaned my house, weeded out the "weed from hell," worked on the outside gardens, transplanted stuff, cleaned up whirlies from the maple trees, cleaned up leaves, clipped plants, chased the kids, planted seeds, played softball with the kids and generally got into just about everything to snap myself out of the funk. I don't know if it worked but I feel more focused. And for heaven's sake, my poor neglected house is clean. That soothes this savage beast a little.

In the words of dear Kathy, "it's been awhile since I flashed my doctor." Well, I did that today too. It was a checkup with the original surgeon. Apparently, we are again revisiting the margin issue. He's having a pow-wow with all the doctors involved to see if I need to have that flap of skin removed on the lower right breast. As he put it, I've gone 26.8 miles in a 28 mile marathon so why not finish it? Maybe because I thought it was already finished???????????

I'm not certain how I feel about this. Apparently, they'll take the skin from my tummy and replace the questionable margin area. Seems to me it's like putting on wall paper. But you know, I'll let Dr. S get all involved in checking out this issue because it is an important one. He's directing the symphony of 4 doctors who've had a hand in the stew pot. And I know he's looking out for my best interests. Throw in the fact that he did cure my Mom of BC and he's way up there on my list.

I don't want their stinking tram flap right boob reconstruction. If this has to happen, they need to replace the skin and give me my gel implants and push me out the door. Short and sweet - like an oil change.

The biggest problem with "being done" is we start to look past just one day at a time. I shouldn't have done that - it was a major mistake. One day at a time works much better for me.

Renee, I'm speechless...

If you want to know why, visit this link for Renee's post about the Relay. And my luminary :o)

Thanks so SO much!

Thursday, May 14, 2009

Writer's Block

The latest cancer dish is a complete lack of writing inspiration. It's pretty annoying considering even chemo couldn't bring me down. But this past week has. I'm way tired, had a ear infection, and don't feel well. Just generally unwell, as opposed to anything specific.

I would like to finish my spring cleaning (a month late) since my house has been neglected for 9 months. Getting some stuff done but not too much. My hips make me suffer if I do anything too out of the ordinary. It sucks.

Still looking for that magic wand to make it all better.

Wednesday, May 6, 2009

Penguins taste like Chicken!!

Not really but I thought I'd devote today's blog entry to the Washington Capitals and their run in the playoffs. They're currently up against the Pittsburgh Penguins in the semifinals for the Stanley Cup.

This picture says it all.

A poster from the best Maryland sports board on the web went to the game the other night with this sign. He even made ESPN!!!

So I decided this guy, and the Caps, deserved a blog post solely for them. Good karma being what it is - we can't pass up every opportunity to send good vibes to Ovie and the Caps.

Do not, under any circumstances, Google "penguins taste like chicken" to try to find this picture. You will only end up with literal observations of people who are really concerned with whether penguins do, in fact, taste like chicken. I didn't read deeply enough into any entry to determine whether people have tried this or where one might find a penguin for dinner.

Go Caps!!!

Hugs to you all. Thanks for your props, comments, and suggestions. Together we can make this manageable.


Tuesday, May 5, 2009

Some nausea help, maybe?

I researched an article yesterday about motion sickness remedies, specifically the over the counter variety. I came across something called a relief band which stimulates the nerves in the wrist, transmitting nerve impulses to the rest of the hand. For some reason, this helps with nausea.

Anyway, I read through alot of reviews on this and discovered that some individuals use the wrist bands to help with chemo nausea. Can you imagine not having to deal with the awful constipation that comes with chemo? My Mom isn't usually game to be the guinea pig for new things but I talked to Dad about this last night. She might have to be the experiment for her Tuesday treatment.

I also found something called Hylands motion sickness pills. Now herbal remedies need to be used carefully by folks taking chemo but this is something to consider. I used Hylands on Jackie when she was a baby for tummy upset and teething. And I've used the products myself too. Something else to consider.

I decided I want to get my mom with an acupuncturist although when she reads this, this will be the first she's heard of it :) She takes a chemo called Sysplatin and the way I understand it, the "platin" chemos cause hand tremors that can be pretty debilitating. Writing, applying makeup, cutting (no knives, Mom!!) and putting jewelry on is a challenge. We understand this is temporary but anything to help her should be considered. Another guinea pig moment, yes, but who cares if it makes life easier for her? Will keep you all posted on my efforts to convince her this might help. That should make for some entertainment, huh? Might even rank up there with the voodoo doll.

Boring day, did nothing spicy. Haven't found that magic wand that erases months of fatigue and blahness. Was so tired today, you wouldn't think I slept for 7 hours last nite. Maybe it's the broken sleep that just piles on and on. My hips really plague me at night so I don't sleep well at all. It frequently feels like my back is broken so I can't turn over. Just peachy.

Another bizarre aspect of all of this is my complete loss of appetite. I can go all day with nothing, which I know is awful for me, and then be hungry for dinner. I'm just not hungry. Everything still tastes bad. I force myself to drink a Slimfast to get something into me. Too bad this isn't translating into a svelte figure. Tamoxifen is taking care of that. The hot flashes are developing a more predictable pattern and aren't lasting all night anymore, thank God.

Eyelashes are really thick but still short. Eyebrows back in although they aren't as long across my brow bone, if that makes sense. Hair, pah! I'm sick of this hair stuff. It's going slow which is downright annoying.

Rain, rain go away. Really. It's still Guatemala here. The highlight of my day was watching the grass grow. And taking a nap. yipppeeee for me.


Monday, May 4, 2009

Book titles

Too busy to write, too busy to update this blog, too busy to do laundry (yay! I think?!) and too busy for naps. I'm tired here and my body telling me to rest in the form of a splitting headache and sore hips. I need to listen.

We really had a busy weekend with softball, yard work, catching up Stef with missed assignments and a party on Sunday. All last week was a disaster with repeated doctor visits for Steffie and her out of school. All of this adds up to a frustrated writer who made no money over the weekend. I usually rely on Bill to direct the symphony when I need to catch up. Except the symphony was all over the place.

It's pouring rain here, like Guatemala pouring. You'd think that would allow for some quiet time around here but Jackie was bouncing off the walls today. Good thing she's going to school tomorrow or she'd be duct taped to wall. Not really but that sure is a funny visual :)

I wrote some more of my book last night. It really did surprise me how upset I got filling in the details from my surgery last year. Reliving that time was quite painful and boy did I forget alot. Bill's playing with a full deck so he helped me. He also wants me to consider putting the book together in an order other than chronological. I need to think on that. I've read so many books and many do seem like memoirs. I want mine to be more. "The practical chick's guide to having breast cancer and kicking it's ass while still remaining moderately sane and functional" Too long, huh?

I'm sure "Cancer is my bitch" is taken. Wait a minute, I'm checking that. Forget it. Some guy has a website and makes shirts. Guess that title is out of the question too. The least of my worries is the book title but you know, sometimes one needs to dream. I can adamantly state that the cover of my book will not be pink or I will kick the publisher very hard in the shins AND butt. I don't do pink - I NEVER have done pink.

I read Deanna Favre's book. It was well written although I got the ghost writer sense. It bugged me. I never felt like I got into her head and that began with never knowing what type, staging, etc., of cancer. It felt aloof. She did have a great story, especially being Brent Favre's wife while she was undergoing treatment and still participating in everything required of her like a trooper.

But hell, is breast cancer the same for the rich and famous as it us for the plain old folk like me? I don't think so. That's a pretty prejudiced statement but I know the financial worry, despite my good insurance, has added some gray hairs to my bald head. I'm being a bitch again but so what. If anyone wants to set me straight, go right ahead. This is an extremely underdeveloped thought up there. I'm open to debate.

I don't want my book to be filled with cliches. I want it to be funny and unique. I'm not Lance Armstrong so I don't feel I need to give everyone a pep talk. I want to convey a story and show how we bungled our way through it. Practical advice, tips, and help as well as deeply personal insight. How's that for a barrel of worms?

I read through what I wrote last fall after my first chemo treatment. My computer went in for service for three stinking months and I didn't have the book saved to USB so it went unattended for awhile. I don't really know if I cried reading it because it's about me or because it's moving and emotional. Whatever. I'm wandering aimlessly with these thoughts here :)

I think my brain needs a break. Ciao, arrivaderci, adios, tata for now!!


Friday, May 1, 2009

My B*tch Hat

I wanted to say a special hello to everyone who's popped by for a visit. Welcome and I'm so very glad you came to read my ramblings. You're all added to my blog roll so I'll be avidly reading what's going on in your lives and I'm quite excited about it. Giving a shout out to Alli, Cora, Beth, Jill, JD, Ronni and Daria. Please kick me if I forgot someone new. And all those who've traveled here from Renee's blog (Toni), hello and hug that sweet lady for me.

And everyone who visits needs to do a happy dance because today is the day that Deb Lattimore finished her chemo. I imagine she's doing a jig for finally being done! How you do a jig after chemo escapes me but I know she's got to be thrilled!

Amazing how time ticks by here. It's May 1st. I'll talk about how great the month of May is another time.

I need to put on my bitch hat for a few minutes.

We went to the pediatric urologist today with Steffie and got good news. The doc thinks the repeated UTIs are just "nuisance" infections. Most kids don't get them like this at her age but he ruled out heredity, vitamin or food issues, or functional issues (these are proper voiding habits, cleanliness, etc.) He doesn't believe it's a physical problem either. We liked him - he was great. But his assistant and me didn't hit it off too well.

He took her history and I came armed with test results, sonogram results and records. He praised me for that - I learned this exercise from BC - come prepared. Anyway, he asks me if we had VCUG results (this is the cathether with the dye test that I've been resisting since it's not recommended nor will they sedate her for the test). I said no, we don't have them. And he asks why not. I explained I couldn't find a place to do the test with her sedated. He tells me it's not painful. I tell him it's traumatic, especially at her age. He shakes his head at me, looking at me like I don't have a fricking clue. I should have pulled off my shirt, showed him my chest, and told him what I know about pain. I hope he had really bad indigestion at dinner. And lunch too.

So I'm getting my hackles up. And thinking this asshole doesn't have a clue what he's talking about unless him and his urology resident buddies stick cathether tubes up their wee wees for fun. I plainly said, "I am her mother and I decide what is done to her." He beat feet out of there. Strange that the urologist confirmed our suspicions, also said he realized the test was traumatic, that the test WAS NOT necessary and we had made a good choice. Two out of three doctors said it wasn't needed.

So there, you weenie resident. You were MY bitch today.

The plan is to do a renal scan of Stef in the next week or so to check for kidney damage. The doctor believes there's no damage to her kidneys but he wants to be sure. She hasn't had fevers or pain in her kidneys. This is just to rule it out because a treatment plan would be different. Right now, she's on her main antibiotics and then a maintenance dose for a year.

I also addressed her vitamins and probiotics to help restore her bladder's lining and prevent yeast infections, boost her immunity, etc. He said that there is nothing scientifically proven, no scientific studies showing the benefits. Blah to that. He was so nice in comparison to his assistant that I kept my bitch hat under the chair. If probiotics don't work, then why are they used quite frequently with IBS and colitis patients after all else has failed?

I've been giving her yogurt to help combat this on the advice of my dear Vicky, who is VERY SOON going to be a post-college, ready-to-practice-after-her-internship nutritionist. I value her advice for my whole family as well as her daffodil growing gift! Alternative treatments do work and are important. Especially taking the very best supplements if you need them. We purchased New Chapter vitamins for Steffie called "Every Kid." These are naturally derived, as opposed to the chemical and synthetic vitamins found elsewhere. I'm taking the woman's variety and found them at a place called for easily 25-30 percent off. Less is never more when purchasing vitamins. I'm striking a balance between her maintenance antibiotics and adjusting her diet to remove processed sugars. Stef had a COW today when I explained this - she's mourning her fruit rollups as I type this.

Mom is taking them too. If we both become Tiggers, bouncing around with unlimited energy, I'll let you know :)

Swine flu. I have to talk about this. We, most of us, have compromised immune systems and while we don't need to be panic monkeys, we do need to be careful. Tell me if this equation makes sense. Don't worry but they're closing a nearby high school until further notice. Don't worry but an elementary school in Laurel is closed for 14 days. Why 14 days? 14 days is alot the last month of school.

Limit your contact with other people, limit shopping or let others do it for you. Hang out on your own front porch, in your backyard and around home. Let your loved ones do your grocery shopping during the least busiest times if you can. Practice the cleanliness routines we all know to prevent germs spreading. WE DON'T NEED THIS NOW!!! All of us have weakened immune systems so please, dear friends, be careful. While this hasn't proven to be as deadly as the outbreak in Mexico, it's still dangerous for people like us who are in the process of chemo, rads, or recovering.

I want to rant for one more second about how I wanted to go back to church this weekend. I'm avoiding it for now, despite not wanting to, because I need to be careful. I want to see what happens around here, how they handle it, where it spreads, etc. I live directly where the sniper attacks were a number of years ago. These folks who run the state aren't the most adept at handling crisis situations.

Hugs to you all.

Bitch hat is off :)