Not Again

I can't believe this is happening again. I really thought that all this cancer suffering was behind me but just when I was starting to feel pretty comfortable and content,....radiation takes a burn for the worse. I have been suffering with what I'd describe as a wicked sunburn the last 4 or 5 days. It's been described to me as more like a chemical burn in it's reality but since I've never HAD a chemical burn it's like a really bad sunburn to me. But, tonight I noticed blistering in some of the bad spots. Great. I have three more weeks of this. I'm pretty devastated and have been thrust into a bit of a depression or it could be intense cancer fatigue. I don't know and I since I don't care, I'm leaning toward depression.

I'm pretty sure everyone around me is sick of this too. I haven't shared my isary with very many people because everyone just wants it to be better. I hate being the carwreck in everyone's life.

Nights are the worst. It just stings and itches and hurts like hell and I can't sleep. Ugh.

Halloween

Geeze Louise. Tomorrow I'm starting NaNoWriMo. I'll be writing a novel in 30 days. I still am not sure which story I'm going to write yet. Yikes. I have a couple good ones brewing but don't have an idea of how they actually end or really a clear idea of where I'll start tomorrow. Crazy. I'll try to continue to blog throughout the process and may even include some excerpts.

I started a pottery class last Monday. I went again yesterday and as it turns out I'm great at it. The instructors were amazed. I think it's my super power that I gained from being dipped in chemo poison. Anyway, yesterday I cranked out two gorgeous bowls and 3 plates. Keep in mind this was my second class and most people were struggling with centering the clay on the wheel. I just love the feeling of clay, the abondonment of worry, life and everything when I'm working on a piece. I'm just concerned with molding it into something beautiful. It's so freeing. I wish I could spend my days in a studio. I haven't been happier in months, years? I don't know.

I'm actually enjoying the process of throwing clay more than writing. It's less emotional. It's just what it is and I don't have to explain myself or anyone else. I love it.

Saturday with electricity and phone!

I know. I know. It's "not about the hair" but can I tell you how geeked I am that my hair is coming back. Today when I came out of the shower and dried myself I was stunned when I rubbed my head and their was actually water accumulated in my fuzz. I was so thrilled. It's been months since I've had any hair. I slowly went shorter over the months in anticipation of possibly losing my hair so, that by the time it came out in clumps it was only about a quarter of an inch long. I had very thick hair and although it was short there were several million (who knows exactly how many hairs we have on our head?) very short hairs. Within a day I probably went down to 100 and then within the 2 months I was on chemo I probably went down to about 10 stray hairs. So, imagine my surprise when I could account for some water in my fuzz. Wow. I'm going to be done with this a be well, be better for it. This is a hopeful thought.

I love my radiation oncologist. She's right out of her residency and she's smart and idealistic. I love her. Her name is Dr. Fernando and she's great. My radiation techs are another story. There is one I kinda like. One is a smoker (yuk!) and she's the one that told me I'd get used to it. "It" being walking with a hospital gown untied through a waiting room full of people. I said that would be impossible and no one should be forced to lose their dignity even if they have cancer. I'm not "used to it" and choose to wear a sweater over my gown but IT is getting easier.

Ode to Jan and Mariam

I'm sad. She was someone I knew through the internet. I never actually met her and only corresponded with her once. She wrote Cancer Made Me a Shallower Person. I'm going to miss her though I'd never met her.

Jan from my wellness group died too. I'm so sad.

This freaking cancer thing. My tumor is getting smaller but the cancer experience continues to grow.

I'll miss you Jan and Mariam.

Friday the 13th Storm

Dear God,

I'm tired of drama. I'm hoping like crazy (and praying too) that 2007 will be UNeventful. I'm actually hoping it will be boring. I want time to read, clean, scrapbook, and just live. Anyway, hoping you get this message and put me on the books for nothing in '07.

Love, Barb

I'm living on a mattress on the floor at my parents. We have massive tree damage, a utility pole down in front of our house and it's freaking October!! What the...? I actually think that the epicenter of the storm was our house. It's like a war zone. I woke up Friday to 2 1/2 feet of snow and all the trees in our neighborhood damaged. We couldn't drive out of our house until late Saturday. I was supposed to start radiation on Friday. I didn't want to. I'm afraid I may have willed this storm into being so I could get out of radiation on Friday. It didn't really help, as it only prolonged the inevitable. I started radiation on Monday. It sucked, as I imagined it would.

It's a rotten, horrible joke that the woman (me) who hates hospitals and choose to have a homebirth now has to lay on a cold table and get radiated EVERY day for 6 weeks. It is wrecking havoc on my blood pressure. Every time I go in that fluorescent lamped, stark room with the giant machine that whirrs and whistles, my heart rate accelerates.

wednesday

the house is overwhelming me
anxious about radiation starting
trying to get life completely in order
before it starts
of course
impossible
raining again
needing time for me
it seems
or not
perhaps needing a friend
difficult to make friends
while undergoing cancer treatment
just don't want to open up in
that way
we'll go to Gilda's Club
Noogieland
tonight and I'll see my pals there
and hope that I can get through a room
tomorrow

This is Crazy but Fun

What psycho things have I done in the last 24 hours? Well, I signed up to write a novel in 30 days. CooCoo! I havn't finished unpacking the boxes in my house. I haven't organized things that are already unpacked. I live with piles of magazines and books lining my walls. I feel like my Aunt Hotchie, who was a borderline horder. How in bloody hell am I going to do this? Just thinking about it makes me smile though so, I must be on the right track. If anyone joins me PLEASE let me know. We can support each other by encouraging each other not to cook or clean but to WRITE. Ahh, joy.



Also, if that weren't enough. I signed up for the Avon Walk for Breast Cancer. This is a 36 mile walk in May. I can barely walk 3 miles without feeling exhausted these days. Holy crap. Am I mad? Again, this is all making me smile and I'm just following that joyful feeling. Insane I know.


You can check out my Avon Walk website here.

9/28/06

Kids home
Erin got sick last night at
Friends house for dinner
Saw old mentor -- Walter
Taught me to be activist
Found out not gene mutation
Good news
I guess wonder why if not genes
Nurture or Nature
Was it environment I created or
Environment you created

And still it rains...

Yes, it's true.

This is not the most flattering bald shot but it is a bald shot. Rachel got a cell phone with a camera and took this very close shot with her phone. This is me now. The hair isn't coming in yet either. I feel a little stubble but there isn't anything to show for it...I still look bald.

Thanks for the Materials *

Since I was diagnosed with cancer I've had many friends and acquaintances give me books, articles and recordings about disease, healing, nutrition, etc. I love to read these things and always, take what I need and leave the rest but sometimes, when I'm not feeling super confident, I wonder if there is the slightest bit of criticism on the part of those who send me these books. It's as if people think I'm lacking some insight or understanding into why I have this disease or how I can heal from it. I know that this isn't their motivation, or at least isn't the motivation of most of my friends, but I wonder.

I've sent numerous books on parenting/breastfeeding/birth to many of my friends and relatives. I always thought that I had a perspective that they may not know. I'm certain that I've helped a number of people find their way in parenting by sending them books but I may have also made some feel criticized. This is new insight for me.

I think I'll start asking new parents to share with me their new perspectives, insights and knowledge. What have they learned on this journey of parenting? I certainly don't know more than anyone and don't assume to know what an individual is ready to hear or learn. Everyone is on their own path.

So, now that things have calmed down and I'm feeling better and becoming more myself. I realize that I have the knowledge, the strength, and the ability to heal within ME. Not in a book, a religion, a specific prayer. If these things resonate with my inner being than they can help me to heal or to tap into my own strength and ability to heal.

* This isn't meant to make anyone feel bad or not send interesting articles. I love the information. This is about me and how I receive the information.

Finding Compassion

This seems to be turning into a cancer blog. It's ok. It's me now.

Paul's grandpa died on Monday and his family is converving on WNY. This will be a lesson in compassion. There a few members of Paul's immediate family that have not attempted ANY contact during the "chemo" experience. It's so glaringly insensitive, as I've received dozens of prayers, notes and e-mails from good friends and some acquantances even. I met a friend of a friend last summer one time. She sent me a lovely card just saying she was thinking of me. Compassion. I know that some people are just not equipped to experience life. That's sad. That's the place where compassion comes from. Understanding that people's actions are not about me but about them, I suppose.

I'm very excited that I'm going to see His Holiness The Dalai Lama next week. He's speaking at UB.

Still not in a place of inspiration to write. Here is a link to a great essay from NPR. It's not about the hair. It's not.

Not About the Hair

Inner World

Clearly, I haven't been inspired to write lately.

I've been so caught up in dealing with getting healthy and making it through chemo. It's been a full time job. Also, I'm caught up in my inner world. I spend nearly the entire day visualizing, paying attention to my thought patterns and trying to make it through the "labor" of chemo. Really, it's been like a contraction...One giant 8 week contraction that took all my focus, energy and strength to endure.

And now, I'm slowly...slowly...starting to come out of it.

Hell

I want this hell to be over.

Reprieve

Monday I went kicking and screaming to my appointment for chemo. I was dreading it. In fact, I had a number of full blown "ugly cries" the 24 hours leading up to the appointment. I just didn't want to do it.

It turns out my body agreed. My white blood cell count was lower than it was two weeks ago. I shudder to think how low my white blood cell count went down after chemo II. Anyway, I got a week reprieve. I was so excited to have a week of feeling fairly human.

I talked to Johns Hopkins and my doc at Roswell and everyone agrees that taxol may not be worth the trouble for me. It may not increase my odds of no recurrence in the future. Though no one knows for sure as no one can agree on my exact diagnosis.

I'm feeling a bit sad these days...I could write a list of reasons why...cancer, chemo, moving, disappointment in certain people's lack of contact during this trying time--I don't want to mention any names...in-laws, keloid on my lymphnode scar, etc. The list goes on.

But, what I would rather do is mention what I'm grateful for.

I don't have to work.
I am half way done with chemo.
I have a beautiful house and stream in my backyard.
My kids have stayed healthy this summer.
Paul shaved his head to support me. Even though his hair is already growing back...I'm still proud of him!
We're going to the Caribbean in January.
We're celebrating our 15 year wedding anniversary Aug 24th.
I love my kids.
I have a very supportive family, especially my mom.
I'm going to an amusement park tomorrow with my kids. I couldn't go if I had chemo on Monday.
I look good in a scarf.
I don't have to shave my legs or pluck unwanted facial hair.
It could be worse.
I'm not addicted to caffeine anymore due to my repulsion at the smell of coffee.

I better stop now as I'm digressing and starting to whine. Oprah, I'm sure, would disapprove.

Johns Hopkins...I miss you

I've got to write about this last week, though I don't want to relive any part of it. I know that if I let enough time pass, my brain would shove the experience into the dark recesses of my mind as a course of self preservation.

As mentioned in an earlier post, my fantastic cancer team at Roswell Park, failed to mention that I needed a neulasta shot 24ish hours after my chemotherapy. The lack of which sent my blood into a nuclear meltdown...white blood cells low, platelets low, sodium high, blah, blah, blah. The chemo nearly killed me. Thank God, or anyone who will listen, that I didn't get an infection. Anyway, for chemo II they apologized profusely, got me the shot 24 hours later and gave me antibiotics...just in case. You see, my body wasn't ready for another dose. My blood was at the breaking point. What my expert team at the "renowned" Roswell Park Cancer Center, so good they weren't even in the top 52 cancer hospitals in the USNews best cancer hospital rating, what they FAILED to mention were the possible side effects of this shot. But, I don't blame them entirely, as the Neulasta website says ONLY 31% of patients have the particular side effect I was blessed with...bone crushing pelvis pain that emanated up my spine and throughout my skull. It was paralyzing. But, what was most distressing was my fear that what I was experiencing was a result of an infection that may kill me. I was writhing in pain while on oxycodin. Major narcotics only took the edge off. I called my team at the renowned Roswell Park where my Doc was off at a conference and the nurse practitioner said, "It's probably not an infection because you're on antibiotics. I don't know what to tell you. You could go to the emergency room, IF IT WILL MAKE YOU FEEL BETTER." You idiot...I went to a breast cancer support group at Gilda's Club and within 2 minutes the angelwomen told me what it was...the freaking Neulasta shot.

I can forgive the dumbasses for their error with chemo I, but leaving me stranded and in pain is intolerable. I'm a tough ass when it comes to pain too. I've endured a lot of it. In fact, I've choose pain in certain instances as a course of character building. Childbirth, long distance running, mountain climbing and third world living. But, pain in this instance is torture. Someone I loved once said to me..."You can't talk philosophy with a man on a rack". By God, you can't neglect a chemo patient in pain.

Skunked

Well, two down. I had my second chemo treatment on Monday. They almost didn't give it to me because my WBC count was so low due to their oversight in mentioning a shot I needed to get two days after my first chemo to boost things back to normal. My doctor "ate crow" (his words). And allowed me to get the chemo even though he doesn't usually go below 1000 and my levels were at 800. But, I panicked as I had the next week planned to a tee for childcare etc. and he relented. I'm taking Cipro profilactically and got my shot exactly 24 hours after chemo and have taken my germophobia to great heights. Those who know me would be amazed that I could battle bacteria better than I did before...

I was starting to turn the corner yesterday. I ate some dinner and was feeling ok. Not great...still wanting to curl up and die but better. At 11pm I was starting to doze off when the worst, most pungent smell overtook my entire being. I ran out of my room to meet a pie-eyed Paul saying there's a skunk. It turns out the skunk hit Stella, our 3 pound Chihuahua. The smell is everywhere. I just gave Stella a bath in tomato soup because I didn't have the energy to go to the store and get V-8, which everyone tells me works great. We bathed her in dish soap and one of my nice smelling conditioners and that sort of worked too. My hands picked up the stink from the tomato soup bath and I've washed them no less than 10 times in the last hour. Of course, this doesn't bode well for increasing my appetite or keeping the nausea at bay but it does get me out of bed...because the stink is worse if I'm not moving.

Off Week

Well, I feel normal now. Really weird, because I felt like dog poop just a few days ago. The chemo week sucks. The first few days are like a fog. The meds keep you drugged so you don't really know how bad you feel then you stop taking the meds a little before you stop needing them and POW! you feel like shit, unless you keep taking the "as needed" drugs that kind of take the edge off. Toaward the end of the "chemo week" I started getting hot flashes too and my bowels and pee smelled like liquid sludge from Love Canal. I also had sore lymphnodes at the end of the week as my body worked overtime to purge the rot from my system.

This week I'm feeling fairly normal. I'm starting to feel like myself, just in time to start the whole ball rolling again on Monday, July 24th. Chemo II.

Lost days sort of...

Well, it's thursday. I'm starting to come out of my fog. It wasn't so bad but I was out of it. Very tired and just feeling "funny". It's hard to describe. I'm not sure how much was the chemo or what was the effects of the very strong anti-nausea meds. Oh, well. After my morning nap today, I ate some soup and felt a little better.

I've had enormous support. My cousin Mary has come every morning to make sure my kids are fed and hangs out with them while I take my morning nap. Wow. She does dishes, makes lunch too and lets the kids play on the tramp and jump in the sprinkler. Oh, AND she goes grocery shopping. My mom came by one evening, my dad took the car in to be serviced, my mom and dad spent 7 hours here watching the kids while I had my chemo infusion, blood work etc. My cousin, Sarah, spent a few hours playing with the kids yesterday and my sister watched my kids while I went to a New Member meeting at Gilda's club. Which is located in this very cool mansion in Buffalo with all sorts of support groups, art, yoga, tai chi classes and the taa daa....Noogie Land for KIDS! It's the entire basement of the mansion set up for kids. These are all kids living with cancer in their family -- a safe place. Just what my kids need.

I'm kinda outta it...can't remember the days...my brain is foggy. But, I'm doing ok.

One down...

I had my first chemo infusion today. Looking back at the last few posts, I see that I was really bugging out leading up to this. I'm not sure why I've been so freaked out...maybe the move to a new state, new cancer docs etc or maybe it's just the freaking breast cancer and everything that goes with it. Who knows? As my kids say, "Too bad, so sad."

I feel a little "funny". Not sick or anything just weird. I feel a little nausea just under the surface but it's being kept at bay with enormous amounts of anti-nausea meds. Better keep those up.

MR f 'ing I

After the appt for the unnecessary ductogram and after the weeping in the radiologist's office and after she asked me what I wanted to do, did I want an MRI, I just cried. When I met this radiologist she was a close talker, right in my face and making me feel very awkward. Her first words out of her mouth were, "So, you choose to have chemo." This in itself-- through me into a tizzy. It made things sould like a want something that isn't a reasonable option. I KNOW I'm sensitive to it. And maybe they are too...but I have the entire tumor board at Johns Hopkins behind me. It is the right thing to do. It wasn't really a choice. I need chemo. I have cancer cells in 4 of my lymphnodes and they've figured out how to move. I need chemo. Anyway, I asked for an MRI over a month ago...to check to see if the 1mm invasive tumor in my breast IS the primary tumor. Dr 'nucci hemmed and hawed and called Dr Levine and wanted to know what I thought. I honestly had no thoughts except that I wanted to be done with this scene...the cancer scene. Finally she said yes. I'd get a call in the morning for the MRI. They called at 10 and asked if I could be there by noon. My mom came and picked up my kids and I went.

It was one of the worst moments of this entire process. I was alone in this scary tube trying to communicate with the staff and no one was listening and they didn't respond to my shouting or hand waving. Finally I just gave up and tried to calm myself from having a nervous breakdown--breathe, breathe, pray, breathe, no use my heart is bounding out of my chest. I try again to say something during the lull in the machine...nothing. I move my hands...nothing. Finally the test is over and they pull me out. I say, "That was really tough. I didn't expect that." The dumb ass nurse said to me, "Well, some things you need to study up on." I could feel the emotion bubbling up to the surface...the sobbing begins...as I say"You want me, the person who just moved to thia state less than 1 week ago, with 3 small children, diagnosed with breastcancer, starting chemo on Monday to do more research on this machine that you are supposidly an expert on. Tell me ... what is your job? ::::::sob::::: Defensive nurse now says, "Well, didn't they talk to you during the test?" :::::sob:::: "No!" "Oh, that's why." As I was leaving, the woman who did my test said, "You looked so calm and you didn't move, I didn't know there was a problem. Next time take adivan (sedative)"

Things I thought about while I was in the machine alone and frieghtened for 50 minutes.

• My kids and how strong they are.
• My husband.
• Jesus, Mary and Joseph. Said some Hail Mary's and Lords Prayers.
• mantra...I am beautiful and perfect.
• had a few nam myoho renge kyo's flash by
• monty python players making sound effects with coconuts thanks to "cancer made me a shallower person"

I'm really glad that's over.

I shaved my haed this evening. It's phase I. There is still hair...maybe 3/8" . It looks alright. R &E helped with the clipping. I'll wait to shave it bald until after Monday.