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.

I'm Here

We are now in the new house. It's funny, I haven't had that moment where you wake up and wonder where you are or think you're in the old place. I'm just here, finally, and it's as if I've always been here. I am walking into walls and sconces because I don't have the subtleness down of the exact amount of steps it takes to get from the front door to the kitchen and from the bedroom to the bathroom but it feels like home. If you think living with a bizzilion boxes and crap everywhere is home. There is also one not so pleasant aspect to this house...it stinks. I will be ripping out some carpet tomorrow while P is at work so, he can't protest. We haven't ordered new carpet so we'll be living with sub-floor but anything is better than the horrible reek. There are just a few places where it stinks and one place is our bedroom and the master bath. Yuk. That's all I need during chemo. About chemo...well, I will be starting Monday. My doctors at Johns Hopkins are pretty adement about it...my doc here in Buffalo could go either way. Buffalo doc says the micromets are pretty small and "MIGHT" not be a problem. Docs at JH say the cancer has developed the ability to metastisize and this needs to be treated with chemo regardless of the size of the micromets. Doc in Buffalo is going to treat with chemo but really put it on my shoulders to decide. Although I have the entire tumor board at Johns Hopkins behind me it still sucks to be the one responsible for this treatment and doc in Buffalo seemed to really put it on my shoulders. I'm scared and nervous about starting chemo and the LAST thing I want is a doc that might not be behind the decision 100%. We'll see how things go on Mon, now that the treatment plan is made. The docs and pathologists don't agree on my diagnosis. Buffalo pathologists say...not micromets and are looking at it as NOT node positive. Johns Hopkins pathologists say...2 nodes + with micromets and additional 2 nodes with isolated cancer cells. Is it node neg, 2 nodes pos or 4 nodes pos? Who the hell knows? They've agreed to disagree my onc said. Great. That's a good plan when you're in second grade and arguing on the playground, it's polite and all, but I want consensus here. Oh, well. (btw, I'm having a problem with starting a new paragraph...so this will be a run-on paragraph post) I went to an appointment today and had a mini-nervous breakdown. I was scheduled for an unecessary test--a ductogram. I kept telling my "new" docs that I didn't need it but they wouldn't listen until finally today after she sqeezed the hell out of my nipple. She said, "Oh, you don't have any bloody discharge. It's milk." Yeah, I've been trying to tell you that. My daughter just weaned you weanies. I'd had two appointments and made a phone call to explain this and still she sqeezed the dickens out of me. After that I just sorta lost it. I was sobbing with my head in my hands and I think I was saying things like,...this is just a bad (---sob!---) day, I had to get a sitter (---sob!--) and I knew (---sob!---) I didn't need this test. The radiologist was sympathetic and listened and was suppportive and I may have got her attention...though it wasn't my intention. I was just sick and tired and freaking out. This whole thing is rotten. Moving, three young kids (with no friends in a new STATE), living out of boxes in a house that has a bit of a stink and dealing with cancer and about to start chemo. (---sob!---) breathing...in...out...here's the good news...1. we have ducks, geese, heron, and bunnies in our backyard creek that I can see from my bedroom and living room 2. my husband went from a 1.5 hr commute to a 15 min commute 3. I bought a 42" plasma flat screen tv and the satellite people are coming tomorrow 4. I love the house (except for the stink) 5. decorating will be fun 6. I'm here!

"breast cancer made me a shallower person"

Too freaking funny.

I'm procrastinating and need to pack but caught up on-line checking out stuff. I found this. Wonderful!

http://www.miriamengelberg.com/index.htm

what's transition

We're moving, finally. The house is nearly packed and the truck will come on Saturday. Transition. Transition is a funny place to be. Because truly all we have is NOW. Transition is waiting for tomorrow or not giving up yesterday. There is no transition, if you're in the now. Or there is always transition--time doesn't stand still. OK, I'm waxing philosophically. No time for that, I've got boxes to pack.

I flew up to meet my Buffalo oncologist at Roswell Park. His recommendations are completely different than Johns Hopkins. Crap. He wants to do more surgery--axilla node dissection (isn't 8 lymphnodes enough?), no chemo, radiation and horomonal therapy. JH's tumor board says no more surgery, chemo, radiation and hormonal therapy. This means I might have to fight for chemo in Buffalo. I want to believe Buffalo oncologist. I want to say, "Great, I don't have to be the bald mom at the parent teacher conference. Or be in bed wishing I could parent my kids during this "transition"." But, it seems negligent. I'm going to fight for poison to course through my veins... watch me ROAR!!!!! I think. I want to do the right thing and it's not clear what that is yet.

Time to Take Charge -- Watch Out World!

The idea of taking charge of one's medical program is the single most common practice among survivors. It is the cornerstone of a strategic recovery plan.
-- Greg Anderson, Author of Cancer: 50 Essential Things to Do

The dictionary defines Optimal as "most desirable" or "favorable. I define optimal care as individualized or customized care that is neither undertreatment nor overtreatment for each woman's particular situation. It is a treatment that gives each woman the best chance of being cured with the fewest side effects and disruption to her life. I believe that as many as 40 percent of women in this country with newly diagnosed breast cancer do not receive optimal care.
--Take Charge of your Breast Cancer-- A guide to Getting the Best Possible Treatment by John Link, MD

I've had it. I'm going to be more assertive about my treatment. I think initially I was so freaked out by the diagnosis that I just went along with whatever they said. Not anymore, they've bungled and botched and they don't get my situation. I do. I know my body, my disease, my situation better than anyone and I didn't trust that initially. Things are gonna change.

Cancer Sucks

I've had two surgeries. One consisted of a lumpectomy that found micro invasive cells and dirty margins which led to another to get clean margins and do a sentinel node biopsy. They took 8 lymphnodes and the pathology report says that two of those lymphnodes had micro matastisis. That's the facts as I know them, now. What does this mean exactly? Well, it's unclear except that my little ole' stage O breast cancer is now at least a stage II and I'll have chemo and radiation. My case is being presented at the Johns Hopkins tumor board next week because there are some peculiarities and they just don't have a handle on my cancer yet.

Pink Ribbons

I'm meeting with a surgeon in a week to discuss my upcoming lumpectomy. I have breast cancer. I'm ok. The hardest part is talking about it with people. In fact, I don't want to talk to people. When someone says the words, "I have breast cancer", people react. The oncologist/radiologist said, "I'm sorry but you have cancer", I was at peace, slightly sad but at peace. But, I know why he said, "I'm sorry". It changes you in ways you can never anticipate. Sorry and pity are the emotion that others feel. I want positive emotion. I want love, not pity. I want strength not sorry. I want reactions like this..

I have cancer. You are beautiful.

I have cancer. You are strong.

I have cancer. You are peace.

I have cancer. You are love.

I have cancer.
I am NOT cancer, it will be gone. I know.

I've only told 3 people. Two friends I choose to tell, they were strong women who I knew could handle it and give me strength, love, and peace. One friend just happened to call and I dropped the bomb. She was a mess. You see, it's everyone else's reactions that shake me. I'm ok.

I don't know how to incorporate this into my everyday interactions. But, it's ok. I don't have to know how today.

Dance of the Lion & Unicorn

So, in the last few days I devoured the book, The Dance of the Lion and Unicorn--The Secret of Conscious Relationships

It's amazing and so "right on". It's changed how I look at all meaningful relationships.

Something amazing happened. I had a question about the book and how it related to my life. I contacted the author, Mark Waller, with the question and he's entered into a dialogue with me about my question. It's remarkable.

As a result of our dialogue, I'm trying to be aware of the chatter in my head. Just be aware of that voice in my head. This is the same message as Eckart Tolle in the Power of Now. Conscious relationships start with consciousness. Conscious parenting starts with consciousness.

motherhood is a crazy profession

P came to town to see oldest in her school musical last weekend. I try to take advantage of these times when he's here to get some me time. So, yesterday I went to the movies and then walked around a bookstore. I bought myself a book on tape because I thought that listening to inspirational writing in the car would help relax me. It's a time when all the kids are restrained and I can almost feel free. It's somewhat like my shower yoga practice. A period of time when I can be doing something but also take a moment to practice contemplation.

I bought the Power of Now.

My middle child got sick today. Well, she's had a fever for a few days but today I noticed some giant glands and she just wasn't herself. She was writhing in pain on the couch. So, I took her to get checked. No strep but the Dr. thought it could be the flu. Yuk. It was nearly dinner time and the kids were hungry so I ordered some food from the joint next to the Doctor's office and got it to go. I gave some of the food to the kids in the back of the car and I stuck in the first part of my book on tape. It was beautiful. The author is an amazing guru, at least, that's what I got from the first 5 minutes that I was able to listen to him. The kids started whining in the back seat that they wanted to go home and not drive around the block. I just wanted to listen, to contemplate and be. The guru was talking about his past when he hated himself and how odd it was that he saw himself as two people the one who emanated hate and the other who received hate...he became conscience when he integrated those two beings. That's when he saw infinite beauty and purpose, when he was at peace and one.

I was just starting to groove on this idea, when from the backseat my kids started whining and insisting.

"I WANT TO LISTEN TO THIS TAPE!", I screamed at the top of my lungs. "WHY CAN'T I HAVE 5 MINUTES TO LISTEN TO MY TAPE, TO DO MY THING? WHY?"

Now I know why there are very few guru mothers. Most Hindu female saints celebrated celibacy and I understand why.

There is a very prominent part of the vocation of motherhood that is selfless. It isn't about personal growth of me, the individual. It's about the kids. The growth comes from understanding that, from playing in that hazy and unclear area. They are from us, in fact there is a moment directly following birth, prior to the cord being cut when they haven't taken their first breath but they've been born when they are a separate and completely connected being. It's profound. Throughout the hours, days, and years we spend time between being their selfless protector and encouraging judgeless freedom.

But, damn it's crazy and hard as hell. And there ain't many mothers in history that were philosophers and I know why.

I'm Tired

I think that everytime I sit down to write these days, I could start out by saying,... I'm tired. It's disturbing. Yesterday, I spent 18 hours at John's Hopkins. It was fabulous. I was honored to be with a woman who had a successful VBAC. It was joyous and I'm so happy that I could be there to help her in any small way. Truly an honor. Then I came home and have visitors from CT. K and her son S. K was a doula client who became a friend. :) I'm S's Godmother too. What a blessing for me to have them in my life. And they were here when I got the call that B was in labor. K was here and watched my kids. Awesome. S is cute BUT one year old. It's exhausting just with my three kids and after being away so long, my kids are rebelling to boot. My little one told me she didn't like me today. Great. She's pissed that her older sister has been her primary caregiver for a couple of days. I don't blame her but I'm tired. I'm tired from work, they're needy, I've got house guests. I want to change this schtick. I'm over it. I don't want to be tired anymore. I want a simple life, I think. But, does tired go along with exciting? Can you have an exciting life, 3 kids, friends, interests, be a giving person and NOT be tired? I'm so tired, I don't know! Help.

Fucking Tired

P has been here all week helping get shit together to sell this damn house. Painting, fixing, moving, packing, etc. He took a week off work, leave with out pay to do it. He says they're fine with it but it is a bit odd to work at a new job for 3 weeks and then take a week off. I can't worry about that.

I've found that when I'm tired I have such a potty mouth. A client called with breastfeeding questions the other day and I peppered my advice for increasing milk supply with a fuck load of expletives. Damn.

Too tired....must go.

Dawn

Day rises like breath
On Mother's breast
Full of hope
It heaves into being

crap made cool

On Jan. 16 I was doing well, I thought. My husband started a job in NY a couple of weeks before and I was home with the 3 kids getting the house together to sell.. We'll stay and finish the school year and move into our perfect dream home shortly there after. Anyway, back to Mon the 16th. I got into a rhythm of taking the 10 year old to ballet, dropping the two smaller ones in the kid room at the ballet studio and working out at the gym attached to the ballet studio. It was great. That day I ran 3 miles on the treadmill and did some ab work. I was home an hour, and was putting everyone to bed. I was sitting in the recliner cuddling with the little one when the phone rang. I hopped up in my running shoes and sweaty clothes, bounded across the playroom and the next thing I knew I was aware of my ankle being pulled in the oppisite direction as my leg and it was rolling away from me pulling me hard to the ground to meet the most excruciating pain, a pain that sucks the air out of your lungs and there is nothing that can make it better short of general anesthesia. The phone stopped ringing but by the time it did my thoughts had flown ahead the next couple of weeks and back. I saw myself not walking, in pain while in the charge of 3 kids having to put my house on the market. How would I live in in our 3 story home.? How would I make it to bed that night, in my room two floors up?

I believe that every illness and injury is a sign or message from our bodies and our sub- conscience. There was a lesson to be learned here. What wasn't I hearing to make my body react so violently and insistantly?

Well, first and foremost, I would be forced to sit, to not walk, not pack, not clean, not DO anything. No yoga, no running, no working out. It was a time of quiet meditation. Be still first. My body didn't want me to think of everything I needed to do and couldn't, it wanted to be still. Be here and now. You can't work out, work on, move but you must be still.

Louise Hay says sprains and ankles are associated with a goodly amount of guilt. Hmm. Where was the guilt? We all hold on to guilt. Where there's anger, there's guilt. Guilt pulls us from the present, to our actions of the past. Looking back, we wish we'd done something different. If I had only known better...and our next thought often is one of anger...but it was the bitches fault. Dumb ass slut, whore, bitch, spawn of an evil coupling, drunken, abusive slob of a ... can't I just let go. And then the guilt comes in. Shit, how can I think so ill of another child of God. Buddhist see good in all sentient beings. The Hindus take it further and see the inherent worth in every thought, being, breath, all that is. Guilt brings us to the cross where Jesus saves us all from sin. My tears at the brutality of man come from a place of guilt. I don't want to sin. I want to be pleasing before God. I'm sorry, is a statement of guilt. So, guilt is not bad, but guilt out of balance isn't healthy. Forgiveness of myself of those who'd hurt me was the anecdote of guilt out of balance.

Thank you universe for all and everything. I'm in awe of all that is.