F Stage IV

2 Years

2011-02-20T17:52:00.007-05:00

Today marks the two year anniversary of Tracy's passing.

As I was reading her blog this morning I decided it was time to make some changes. Tracy started posting as a way to let her friends and family know what was on her mind and how she was coping with the disease, her treatments and everything else. I took over when she became too ill. I was grateful for a place to keep everyone up to date on her condition and more importantly, to let out some of my emotions.

When I finished reading all of it today I realized that I wanted her blog to be in her voice, not mine so I decided to delete what I had written over those three months while she was in the hospital.

My hope is that people will find inspiration by reading the story of an amazing woman who dealt with cancer on a daily basis and never thought to give up.

When you read those posts you realize that Tracy wasn't dying from cancer, she was living with it.

- Jeff

Some Pictures

2011-02-20T17:14:00.032-05:00

In Memoriam

2009-02-20T20:04:00.002-05:00

Tracy's mother Joyce wrote Tracy's obituary. It follows below with information about the memorial services, and a request in lieu of flowers.

It's been clear that your words and prayers have meant the world to Tracy and to her family.

- Sarah

RARITAN TOWNSHIP, NJ - Tracy Pleva Hill, age 41 years, of Flemington, NJ, passed from this life on Friday, February 20, 2009, wrapped in the loving arms of her family after an eight-year warrior's battle with breast cancer.

Tracy is survived by her loving husband, Jeff and adored son, Jason; her parents, Joyce and Ted Pleva of Somers, NY; her sisters and brothers-in-law, Liza and Mark Donoghue of Wappingers Falls, NY, Katie and Matt Wineman of Woodbine, MD, and Jamie Pleva of Somers, NY; her grandmother, Geraldine Maday; her mother-in-law, Peggy Hill of Greensboro, NC; and a sister-in-law, Cindy and husband Wendell Roth of Greensboro, NC.

She was a loving aunt to Lily and Rowan Donoghue, Jack and Nathan Wineman, and Pete and Alexis Roth.

She was pre-deceased by her father-in-law, William Alfred Hill.

Tracy was an advocate for the Young Survival Coalition (YSC), an organization dedicated to young women with breast cancer. Tracy was featured in two of their videos, "Fighting For Our Future" and "The Beautiful Eight".

Tracy deeply touched all who knew her with her wit, beauty, and inspirational spirit. Her one desire was to do the Chicken Dance with Jason on his wedding day.

A Mass of Christian Burial will be celebrated on Tuesday at 10:00 a.m. in St. Magdalen Church, 105 Mine Street, Flemington, NJ under the direction of the Holcombe-Fisher Funeral Home, 147 Main Street, Flemington, NJ. Interment will be private. Calling hours will be Monday from 2:00-4:00 and 7:00-9:00 p.m. in the funeral home. Please visit www.holcombefisher.com for further information or to send condolences.

Per Tracy's request, in lieu of flowers, memorial contributions may be made to the Jason Hill College Scholarship Fund, c/o TD Bank, attn: Mr. Harrie Copeland, 1 Royal Road, Flemington, NJ 08822.

Tracy Pleva Hill

2009-02-20T06:03:00.002-05:00

Tracy quietly passed at 5:10 this morning with her family at her bedside. She was surrounded by love.

You put up one hell of a fight my love but it’s finally time to rest. I’ll forever be inspired by your strength and courage.

-Jeff

Update on Tracy

2008-11-25T08:51:00.003-05:00

Hello everyone,

I'm writing this from the hospital ICU. We admitted Tracy a few days ago and they are doing everything they can for her. She has some wonderful doctors and tons of family and friends here with her. She's the strongest person I know and she's still fighting for her life. Please keep her in your prayers.

Thank you all,

Jeff Hill

I'm Not Dead Yet

2008-09-03T16:32:00.005-04:00

While the initial news I got from my scans had me feeling encouraged, a thorough read through of the reports myself, combined with the way I've been feeling lately (bronchitis, right, that's ALL it is) shows that the disease while:

non-evident in my bones and liver,
regressing in my brain -- with no new involvement,
regressing around my collar bone where I had CyberKnife,
previously identified met in left lung is stable,
and effusions in my lungs are regressing --

the nodes in my chest we have been watching have apparently had a growth spurt. To the point where my airway is being restricted, and I feel I am being asphyxiated. I can't handle more than a few steps before gasping for air and going into a coughing fit. It is beyond frustrating, and might I add, f-ing scary when it feels as if someone is smothering you.

I ran up to My Oncologist yesterday, he sent me to a specialist in tomotherapy today, and I start a 15-day course of treatment to some highly irritating nodes tomorrow. Unbelievable! I am thrilled (but still terribly winded) and so blessed to have this physician on my side. He knows me so well and the depth of my commitment to this fight. So while My Love and I drove home from the tomotherapy center, all I could do is smile and think of this (which you can jump 45 seconds into to finally get to the meat):

Update: Keeping it Brief

2008-08-21T11:10:00.002-04:00

I am completely exhausted. So, lucky you, you don't have to wade through all my prose because I just want to post a short update and then, well, since I'm at work, passing out isn't an option. But, at least look forward to passing out this evening.

Tuesday's Chemo
I had an 8:30 a.m. appointment. I didn't get my treatment until 11:30 a.m. Figure that one out. I didn't get into work and I am going to be contacting the director of the cancer center about this. Ridiculous. Also, this chemo really doesn't like me as much as past chemos have. I definitely feel icky on Ixempra. Oh well, I'll work on sucking it up. Oh, there is good news: 192 platelets!

Wednesday's Scans
All went according to plan. I was in at 8:00 a.m. and was done by 2:00 p.m. Now, I wait. I hate waiting.

Journalist, 'My Cancer' Blogger Leroy Sievers Dies

2008-08-18T13:47:00.001-04:00

Say a prayer for his wife, Laurie. Be joyful for the courage and hope he inspired in others.

http://www.npr.org/templates/story/story.php?storyId=92028479

Scan Day: Wednesday, 8.20

2008-08-17T15:10:00.002-04:00

Initiate requests from the Universe and fervent prayers to espoused deities for regression/stable/NED results... NOW. All comers welcome.

Thank you.

Update: Professional Cancer Patient Me

2008-08-14T14:09:00.006-04:00

I’m stuck. I’m blaming the usual suspect: prednisone. It’s got my head all messed up and I want to round up recent professional cancer patient activities, but I’m feeling really dumb and as if it isn’t worth writing about. More of the same. I’m content, I’m depressed, and I swing unpredictably between the two. So, stuck.

Guess I’ll go straight for the clinical. Can’t get too mired in straight forward facts, right? Monday’s CBC said I have 169 platelets. That, as we all better know by now, is awesome. I am scheduled for chemo next Tuesday. Please note that this makes three scheduled chemos in a row. What, a routine falling into place? Hush yourself. I don’t need you jinxing me.

Mutual Detestation Society
Based on my platelet count, New Doctor has dropped my prednisone by 10 mg. Praise be! She also said that if my counts are still looking good on Tuesday, she’ll drop me another 10 mg. You cannot imagine the sheer relief and pleasure this possibility brings me. I’m tired of feeling like a perpetually humming tuning fork. It’s exhausting. And yet, I cannot sleep. I hate my big, fat, prednisone face and belly. Then there are the cramps in my fingers and jaw. Now, if you’re tired of my relentless jabbering and writing, these little side effects may not sound like such bad things. But, they are painful and they slow my work. You know, my real work. Typing gets challenging.

The physical fatigue is maddening, too. I climb stairs like I’m trying to summit Everest with a 175 pound pack on my back. My quads burn and I have to put two feet on each step before I take on the next. I really hate physical manifestations of what I’m dealing with. F-ing annoying. I’m strong and independent. Huffing and puffing my way around does NOT jive with that view of me.

A Rising Star in the Category of Comorbidities
The radiation damage to my shoulder, which for years existed as deeply burned, reddened and hardened tissue, has now become a gaping, oozing, wound. It requires twice daily dressing changes, antibiotic ointment and over the past two weeks has continued to widen. There are (no kidding) two holes on the top of my right shoulder. I now have a wound care specialist. An x-ray shows that the bone in the area is intact and there is no infection in my bone. That’s the good news. The bad news is that I have a lot of calcifications that are working their way to the surface and destroying any semi-viable tissue in their paths. Hence, the gaping wounds. I'm fighting a strong urge to post a photo of the wounds because it's just that freaky looking.

I saw the wound care specialist yesterday, and he debrided the wounds (again). He said the wounds will probably get bigger. Lovely. Right now, the plan is to get the area cleaned up and as healthy as possible before we consider our next step – how to close the wound up, if that is even possible. I see him again in a month.

But here is the best part: since this wound has opened up, I have developed lymphedema. My arm is swollen with lymphatic fluid that cannot drain properly because I had lymph nodes removed during my mastectomy and the oozy stuff in my wound is over-taxing my body’s sewer system. New Doctor is working on getting me a lymphedema pump and sleeve. I am going with notion that this is a transient thing that will subside once we get my shoulder under control. I need to go with this notion otherwise I’m going to get royally ticked off at the possibility of having to wear a sleeve for the rest of my life.

Scans
To be done this month. I need to schedule.

Donations for Andrea
Assertive Cancer Patient says she has received over $390 in donations for Andrea. That should ease her mind and grocery bill, if only for a little bit. I’ll bet it made her smile at the generosity of those unknown to us but whom we touch. Thank you so much if you contributed.

August 8, 1995

2008-08-08T11:28:00.007-04:00

Just look at them.

Happiness shining in their eyes; both eager to start a life together.
Best friends, lovers and true, comfortable companions.
In each the other found a soul who shared the same goals and dreams for their futures.

Such plans!

They smiled as they took their vow to be true to each other in sickness and in health, and promised to love each other all the days of their lives. It wasn’t all that long until they were challenged to do so.

Resilience. Devotion. Trust. Boundless capacities for forgiveness. Fathomless, near indefinable love.

My Love. My Everything.

Cancer vs Medical Expenses: Which Will Kill You First?

2008-08-06T13:46:00.005-04:00

Those in my direct line of fire have heard me rant with frustration about the financial burden my cancer puts on me and my family. I work full time and have good medical benefits. But, the money that flies out the door to continue my treatment has me in constant worry about having to sell our home. I pay my bills on time, but when I was on disability for three months, things got really sketchy. I have a beautiful home, put food on my table, heat my home and my child is properly attired. I am not destitute, just very, very, very overwhelmed.

BUT, I also acknowledged that I am among the lucky ones who can work, and have benefits. If it comes to it, I can sell my house and move into a condo to continue paying for co-pays, prescriptions and, oh, more co-pays and prescriptions. That's life, right? I know many others fare far worse monetarily than I because of their cancer. THIS is about one of them.

Assertive Cancer Patient posted the other day about Andrea, a woman she recently met who is facing Stage IV breast cancer as a single mother of a three-year-old. She is on disability and struggling very badly to make ends meet. She posts about it here and has set up a fundraiser to help Andrea out. She is hoping to collect enough money for Andrea to buy enough groceries for the next month. If you can, please consider making a donation.

Teri, The Cheeky Librarian, has also entered the scene to get some assistance behind Andrea. She shares her opinions on the topic the costs of cancer to the individual patient and helpfully includes links to possible sources of funds, for those of you who need financial assistance.

A New Resource for Those Living with Advanced Cancer

2008-08-05T09:10:00.004-04:00

Laura Parisi King has been living with advanced breast cancer since 2002. She is a social worker who runs creative writing workshops for people with cancer, and support groups for men, women, patients and caregivers. Furthermore, she has been a guest speaker for various cancer coalitions and is the author of the book Dear Cancer. Did I mention that this woman is also Stage IV?! I'm tired just writing about her.

Laura has just launched a Web site specifically for people living with metastatic disease. It provides resources, information and a call to action to drive more awareness of living with advanced cancer. It is also a work in progress, so I'm betting you are going to see more on this site soon. If you are someone living with advanced cancer or happen to love one of them, please check out: http://www.livingwithstageiv.com/

The Spirited Woman

2008-08-01T10:02:00.003-04:00

Do you try to be your own biggest fan, respect the value and power of your spirit and embrace the amazing soul that you are? Well, sister, you are not alone. Nancy Mills is the creator of the Spirited Woman Approach to Life. She has taught her Spirited Woman workshop to hundreds of women in cities across the country, plans events for like-minded women, recently organized a group of Spirited Woman bloggers, and has a free monthly Spirited Woman E-Newsletter. I think you should check out the Spirited Woman Web site to find out more. And, also, because next month's newsletter contains a feature on a particularly spirited woman. Or, so I hear.

Aspiration! And, a Request.

2008-07-30T02:00:00.012-04:00

I'm like them! Or, more specifically, as I would like to be: helpful, informative, a perspective on living as a professional breast cancer patient worth considering, adapting or revising as appropriate for others' personal struggles with this F-ing disease.

Know what could help me out? If you all felt welcome to comment and ask questions. Not just of me, but each other, too. I'd like this blog to be a comfortable and safe place to ask the questions about living with metastatic cancer that seem to be unaskable, and discuss the issues that seem taboo. It doesn't matter if you are a person living with this crap, a care-giver, or a family or friend who just wants to help someone they love deal with this crap. Rule #1: Only judgement-free, respectful commentary allowed.

A case in point: I've been contacted by a couple women who are not metastatic but live in fear of recurrence. When they have expressed those fears to others, they are told not to worry; that it's gone. But really, it's never gone. It will be with them for the rest of their lives even if they are blessed enough not to face down another diagnosis. I offered myself to them, and they took me up on my invitation. I am carrying on private conversations with them because they feel isolated and frustrated by the reactions they receive from those that are closest to them when they need to explore their feelings and issues about breast cancer and the possibility of advancing disease.

I believe that such dismissive comments come from a place of personal fear. People want to deny the possibility that not only could it could happen again, it could also happen to them. But, those who has fought the battle are quite cognizant of the potential realities. Some will try to repress those emotions and thoughts and go forward to reclaim their lives as best they can. But others, those who are more direct in their approach to life, they have valid concerns that deserve respect and attention. Those who have not fought the disease cannot truly appreciate this direct approach and the need for more knowledge or, at the very least, reassurance that the cancer survivor is indeed reacting normally to a traumatic experience. Dismissal, or avoidance of this survivors emotions to protect your own is not fair. Furthermore, encouragement gleaned from the experiences of others can help arm cancer survivors, preparing them for what could lay ahead. It presents an opportunity to plan for those damned "what ifs." And, that, in itself, can provide peace of mind.

What do you think?

So, after all that soapbox crap, I would like to say, "Everybody, meet everybody." You are my family, you are old friends, and you are new friends. You are people with breast cancer who have questions, fears and daunting thoughts that seem to be held only by you. You are people who love people with breast cancer and want to be the best support person you can be. You are my mother, who drives me up the freaking wall but I could never do without.

Tell me if there is something you want to know more about, or if something needs to be expounded upon. I am clearly not a doctor and cannot provide medical advice. I can only share what I have experienced and the things I have learned as I've scrambled, crawled and fought my way through cancerland. For what it's worth, I hope it's helpful. Maybe, together, we can make this blog even more helpful.

The Week of Adverse Events. Alternative Title: Why Planning is Pointless

2008-07-27T15:19:00.012-04:00

Last week's health management schedule was supposed to look something like this:

Monday: 1 p.m. appointment with oncologist -- routine
6 p.m. appointment for WinRho at hospital
Tuesday & Thursday: 6:15 p.m. PT for the shoulder
Friday: 6 p.m. Happy Hour at my house for my friends at work

Actual course of events:

Routine appointment with New Oncologist goes well. Following review of a recent CBC, we decide I should get an infusion of WinRho before my next chemo. Prior to showing up at her office, I had started taking some Neupogen injections because my white count was down to 1-point-next-to-nothing. I was now up to around 8. So, reconfirming here: WinRho, 6 p.m., hospital oncology wing. Then, I get to head home where I know My Love is making us a dinner of scallops, clams and steak.

I show up at the oncology wing as scheduled only to be told that my appointment had been cancelled and I am to come back the next day. I told them that my appointment had not been cancelled, showed them that there was no call in my cell phone archive and asked that they check again. They tell me my chart has been returned to the cancer center. I suggest a call to New Doctor. I am offered a seat. Thank you.

Twenty minutes later, I am in a room and waiting for a delivery of WinRho. So much for sitting down to a nice dinner with my boys when I got back from my 10-minute infusion. I call My Love and tell him not to hold dinner for me. About 20 minutes later, the WinRho arrives. A nurse administers the med then observes me for adverse reactions for 20 minutes and then sets me free to go home. Yippee!

I get home. My Love is ready to jump on the grill and prepare me my dinner. I go upstairs and change into more comfy attire. I come down the stairs and as I hit the last three steps, I am overcome with a sudden attack of shivers. I am freezing. I feel as if I have suddenly spiked a tremendous fever and start digging in my bag for my ever-handy thermometer. I pop it into my mouth, teeth chattering away so hard I'm afraid that I am about to bite right through it. I am expecting to see 104 degrees when it finally beeps that it has finished its assessment. It reads: 97.8.

By this time, I am on the couch with three blankets on me. I am hyperventilating. And I don't know why. I try to relax and give my body a chance to recover. My Love is unaware of my situation out at the grill. The kid is trying to finish his dinner while I am practically in convulsions and trying to slow my breathing.

When My Love comes in the house with my dinner, I tell him I can't eat it right now. He's confused and asks, "What, you're not hungry now?" I scream, "I don't feel well and I need five minutes!" This, seriously, is a lie. I don't know what I need. I'm freezing, and breathing raggedly and trying not to freak out The Kid. Good thing I screamed.

My Love is standing there. He asks what he can do. Should he call the doctor?

Yes. Call the doctor. This seems to be one of those times when it's ok to call the doctor after hours. So he does. Somehow, The Kid has been dismissed from the room and is apparently upstairs in his room. I don't know this for sure because I am buried on the couch, but The Kid and his whereabouts are what I am most concerned with right now.

My Love gets New Oncologist on the phone and describes our situation. New Oncologist asks to speak with me and after a few minutes of further discussion, she says she suspects that I am reacting to the WinRho and that I should go to the ER. I (don't be shocked, here) refuse. I ask her what on earth they can possibly offer me at the ER to get through this. She says Benadryl. I say, I have Benadryl in my house. How much do I take? She also advises Tylenol and an antibiotic. She asks if I have any antibiotics in the house. Please.

I send My Love to the cabinet with the phone and have him start reading off medicine labels to New Oncologist. They find an appropriate antibiotic which I take with Benadryl and Tylenol. I promise New Oncologist that if things do not improve, I will, indeed, go to the ER.

Within minutes, the shivering begins to lose intensity. I sit up and ask My Love where The Kid is. He tells me that he is upstairs. But, when I look toward the kitchen, I see him standing at the entrance to the dining room looking absolutely terrified.

I call him to me and he runs, tears pouring down his face into my arms. He is hysterical. I am still shivering uncontrollably and my breathing is rough. I hold him and tell him not to be scared. That I am having an allergic reaction to some medicine and just like when you get a big welt from a bee sting, my body is reacting. I tell him that I have taken medicine to fix the reaction and that I am already getting better. I am trying to ease his fears as best I can. And I am feeling awful that I have allowed this to happen in front of him. I tell him to sit on Daddy's lap and he does.

The three of us sit on the couch as I recover from my reaction. Now I am trying to figure out why I had the reaction. And I figure it out. My one and only previous infusion of WinRho occurred when I received two units of platelets and was already pre-medicated with Benadryl, Tylenol and whatever other premeds are typically prescribed. This infusion was straight up. Next time... premeds. In the meantime, once I have settled down enough, I enjoy a late, but lovingly prepared dinner of scallops, clams and steak with my boys watching over me.

The next morning, I feel just fine and go off to work. My throat's a bit sore, but I attribute that to the hyperventilating I experienced the night before. As I go about my day, I realize that I should give myself a break and cancel my PT. This irks me, but I do it anyway. Another change of plans.

Wednesday my throat seems fine. Some yogurt and Kashi for breakfast and no pain or trouble swallowing. Then comes lunch. I pick up a sandwich: French roll with pesto, fresh mozzarella, and chicken. Yum! I eat about half my sandwich, realizing with each bite that something is not happy in my throat. Swallowing is difficult and I feel as though a hunk of bread has lodged itself in my chest. I can't clear it. Swallowing hurts a lot. So I call it lunch. In my office, I sit at my desk and try to will the pain away. I'm afraid to swallow and my mouth keeps watering. And even though I have mentioned pain as I write this, the concept hasn't entered my mind yet. Until I feel like I'm going to vomit. There's my flag! I need to be at the point of hurling to realize that I am, in fact, in pain.

So, off to the ladies room where I assault my throat a second time by bringing my lunch back up. This time with stomach acids! I notice that there are some rather large chunks of bread in the toilet and wonder if I even chew when I'm on prednisone.

I assess my situation standing over a toilet in the ladies room. I decide that this is probably a reaction to the CyberKnife therapy I just finished. I decide to call the CyberKnife folks so I tidy myself up and go back to my office to call them.

When I get them on the phone, I identify myself, my disease and the fact that I recently finished therapy with them, and tell them that I believe I am experiencing some adverse reactions and need to speak with a physician or nurse. I am placed on hold and then, in moments, am on the phone with the nurse. I explain all again and go into detail on my symptoms. I ask if what I am experiencing is consistent with CyberKnife therapy to my collar bone and neck. I am told -- no kidding -- we'd need to see you to assess you. I tell the nurse that that isn't possible as I am two hours away from her. I ask about side effects again and ask to speak to my physician. She tells me that my physician is not in today, but Other Doctor is covering. I suggest that perhaps I should be speaking with Other Doctor. She suggests I go to the ER.

I am tired of the nurse and tell her that that is precisely what I am going to do. And when I get there, a doctor will be calling her to ask her the very same questions I just asked and if she doesn't have any answers for said questions now, she'd better come up with them pretty fast.

I hang up the phone and find one of my good friends and confidantes to take me to the ER. This particular good friend turns out to be a great choice because he spent many years in hospital pr. I've got a pro on my side. So, despite protestations on my part to be dropped at the door, he parks, walks me in and tells them that I am having trouble breathing (true!). I am in triage in seconds and in a room in minutes.

I am given an EKG (normal), reiterate my symptoms, provide relevant history (oy), and am hooked up to a heart monitor. The doctor comes in and she is awesome. She listens respectfully and attentively to my relevant history and symptoms. She asks me questions and she lets me chime in with additional details that could help her suss out the problem.

For instance, she notes that my white count is now 16. That is high. She is looking at my oozing shoulder and wondering if I have some sort of infection going on. I tell her that I recently injected three Neupogens and suggest that I may be over-manufacturing. She considers the possibility. I'm being respected as a knowledgeable patient. I love her.

She is off to contact the Cyberknife folks and get me some pain relief. The latter comes in the form of a vile concoction of Maalox, Benadryl and, honest to goodness, lidocaine. Mouth-numbing, caustic-tasting (but pain killing) lidocaine. Relief lasts about an hour. Maybe I shouldn't have been drinking water, too.

My friend and I overhear the doctor speaking with the covering doctor at the CyberKnife facility. It's a bit of work, but we can hear her say, "She tried to call you." and "Is this consistent with potential side effects from the treatment?" (Hee Hee.)

This is really the end of the drama. I had called My Love after I got to my room and he left work to get The Kid from camp, up north and west of our home. That was supposed to be my job that day (another plan shot). He then headed back past our house south and east to relieve my friend from babysitting duty so he could get home for the evening. I think I got to the ER at 2:00 p.m. By the time My Love got there, it was after 6:00 p.m. I was still waiting around to get some update on my situation or discharge orders.

About 7:00 p.m., the doctor came back, told me she had spoken with the CyberKnife folks and that this, indeed, is likely a reaction to the therapy. Pain management is in order. She tells me the recipe for the vile concoction and writes me two scripts. One is for lidocaine, the other for a narcotic. Thank goodness because the vile concoction can only be consumed four times a day and provides limited relief. I take the narcotic that night when I get home after 9:00 p.m. I think I got four hours of sleep.

Come Thursday morning, things are much improved but still painful. I make myself a vile concoction at my desk. It works. I throw myself into work and love it. I also look at my Filo and see that I have PT scheduled for that evening. Sigh. I cancel PT for the second time that week. The week's plan lay before me tattered. Utterly shredded.

Except, there was Happy Hour on Friday. That, I can tell you all, came off splendidly.

A Life to Celebrate

2008-07-25T10:47:00.002-04:00

A life to emulate.

She's Back

2008-07-23T10:25:00.004-04:00

She has also inexplicably decided that three hours of sleep a night is more than enough. Worse, the inconsiderate bitch brought a friend:

I hate her.

If You're Going to Have Radiation, Then for Cripes Sake, Find a Way to Have a Good Time!

2008-07-21T14:34:00.014-04:00

CyberKnife therapy: Three sessions complete. Piece of cake.

Today I decided that cancer is my hobby. It fills my time. Lots of my time. For instance, having CyberKnife to the nodes in my left collar bone has required multiple visits to the CyberKnife facility for consult, simulation, CT and then three days of treatment. No treatment lasted more than an hour or so, and the only reason one lasted that long is because they had problems positioning me correctly and that took some time.

With cancer ever on my mind, last week pretty much had me immersed in my disease. But I've learned a few things through this ordeal, so listen and learn folks. You can do this if you have to. Today's lesson: If you have to do something miserable, find good things to balance it out. Don't let the F-ing disease drag you down. Thus, I bring you: Two Fabulous Days Spent with Sister #2.

She showed up at our home on Sunday evening. We left in the morning for what could have been (depending up New York metro area traffic) a two... or four hour drive. Sister #2 had the wheel. Having driven myself out for my last course of treatment in 2006, back and forth from the hotel and everything else, this was a fantastic luxury! I just sat. And chatted. And relaxed. It was wonderful! Thankfully, traffic was very light and we were able to go straight to our hotel to check in before heading to the hospital for my first treatment.

About the hotel: My sister-in-law and her husband (who need proper incognito names, I know) collect Marriott points. They kindly provided me points for my hotel stay for my first go-round with CyberKnife and they made the same offer to me this time.

However, I know how precious those points can be, especially when you do a lot of traveling with the kids up and down the Eastern seaboard because you happen to live in North Carolina and everyone else you know lives in Jersey or New York. So, I was a bit reluctant to take them up on it. Most particularly, because I wanted to get a bit more out of my hotel experience this time around. The first time it was just me, three days in a row, in October, and I brought work to keep me occupied. So, one of those business traveler inns did me just dandy. This time though, I was with Sister #2 and it's JULY and I want a pool to sit at when I'm not in treatment and I want a place to get food on-site. Food. Not Pizza Hut. Yeah, sometimes, I'm a diva.

I explained this to my SIL and BIL and told them that I understood that if this particular Marriott stay would consume too many of their valued points, and that if they would prefer to hang on to them for such a time when they could enjoy them properly themselves, no prob. I got it.

However, as I am explaining this to them, I hear BIL click-clacking away on his keyboard and bless his Marriott-point-filled heart, he tells me the room has been booked for the night. Joy!

And so it comes to pass that Sister #2 and I check into a lovely hotel with a pool, and a bar, and a restaurant and a convenience store and all the accoutrements an ailing, pathetic cancer patient like myself needs. With indebted thanks to My Love's sister and BIL.

We dropped our bags and headed off to the hospital. Grabbed a light lunch in the hospital cafe and then headed down to radiology. I was in my usual hospital battle armor: black yoga pants and cotton T-shirt. Full comfort.

I also came in with my preselected CDs to listen to while undergoing treatment. For my music selection, I am remembered by the staff. I do not want any mellow crap to serve as the score for the attack I am about to launch upon my cancer. I want to feel like a fighter pilot who hurtle determinedly into battle with nothing but confidence, energy, intimidation and winning on his mind before the starts dropping bombs on his enemy targets. I started with Godsmack (my favorite band) and kept it moving over the three days with AFI, Serj Tankian, Three Days Grace and Fair to Midland.

Each day, I let the music pound through me as I lay on the table and let General Grevious rotate his multi-pivoted head around my own, aiming his destructive light saber at my infected nodes. I imagined myself walking into an arena to take charge of the octagon in a UFC fight. My mind alternated between two healing phrases: "Die mother F-ers Die" and "Cancer Dies, I Live."

That is how I took control. This is how it looked:

Ol' Prednisone Face laying in her body mold.

Ol' Prednisone Face with her face and neck squishing through the Mask of Immobilization.

Ready for collar bone lymph node cancer obliteration

You're still waiting for the part about the great two days with Sister #2, aren't you? Well, after I put in my time at the CyberKnife facility, we went back to the hotel, changed into our swimwear, grab books, hit the bar to pick up a few pina coladas and then sat poolside for several hours. Perfect. Relaxing. Easy. We chatted. (We did lots of chatting.) Floated around the pool. Sat in the jacuzzi. That's right -- we hot tubbed. Allll afternoon. I also made a point of making sure how appreciative I was of Sister #2 to support me through this whole ordeal. Her selflessness, it was simply poignant.

After we tired of the pool we retired to our room where we lounged around until we decided we needed a fabulous seafood dinner. Being on Long Island, that wasn't hard to find. So, we prettied ourselves up and out we went. And we ate appropriately. I do believe I had the red snapper with shrimp over risotto. We split a steamed mussels appetizer. Yes, I had multiple glasses of red wine. I finished with a cappuccino and crisp apple tart with ice cream. I was well sated and had pretty much forgotten what this little trip was supposed to be about. On our way back to the car to head back to the hotel, we maneuvered into a jewelry store where we purchased silver anklets to remember our little holiday.

Back at the hotel, we fell asleep quickly and woke up still full. So after just relaxing around the room and reading the paper and eating a light breakfast, we packed up and checked out. We headed back to the hospital where I had my second session. In an hour, I was done and we were on the road again heading home. Light traffic again and a relaxing ride for me. As we got close to my house, we realized we needed Chipotle Grill for lunch. So we had it. Then, we cruised through the White House Black Market and Ann Taylor Loft across the street. I picked up a bargain pair of jeans that I will be able to wear properly once... you know... I am off prednisone for 15 minutes or so.

Speaking of: I have at least 77 platelets onboard and get WinRho this afternoon. I have be allowed to drop my prednisone intake by 10 mg/day. Yippee! Next chemo: July 29.

You didn't seriously just read all that, did you?

Vacation: Check; CyberKnife: Launch Stage Initiated

2008-07-14T08:28:00.002-04:00

The short story is all you get right now: vacation with just My Love and The Kid went wonderfully and way too fast. This morning, I pack for my CyberKnife therapy. I should be leaving in about an hour. Further updates to follow later this week.

Thinking of you and what to write about when I get back. Extra thoughts for Angie, Charnelle and Stephanie. You know why!

Genuinely Happy Me

2008-07-02T21:10:00.009-04:00

This afternoon I had an appointment with New Doctor. It was the first time I've met with her since before my Avastin infusion on June 23. On that day, I had 103 platelets. A CBC drawn today reveals that I have 126 platelets on board! This is tremendous as I have had no intervention beyond the daily onslaught of prednisone since my platelet infusion and WinRho push on June 13. Yay me!

I told New Doc that I wanted to get back on my chemo regimen but quick despite her recommendation to wait until after CyberKnife therapy. She confessed to being afraid to give it to me as I am likely to crash again. Well, duh. That's a given. We need to find a way to treat my disease and manage the ITP at the same time. It isn't going to be easy. But, if I am going to keep up my fighting weight, we have to experiment here and find a work around. Ultimately, we were co-conspirators on the same page, looking at the challenge and working together to suss out an action plan.

And I got my way. I will get my chemo with my Avastin next Tuesday. If you knew how I excited I am about this, you would have me committed. NO ONE should be this thrilled to know that they will soon spend the better part of an entire day getting infused with an indiscriminately toxic poison in hopes that it may, just may, slow down the progression of their cancer. Oh, but I am. I am!

Vacation
My Love, The Kid and I are among the many of Americans who are partaking in a gas-price-crisis born summer activity known as the "staycation." The week after The Fourth, we will be heading to the Delaware River for some tubing, the Statue of Liberty, the Jersey Shore, and possibly an amusement park. We will also enjoy a fine dinner that was originally scheduled for Father's Day and get spa treatments thanks to a gift from friends for My Love's and my 40th birthdays... last year. Also possibilities if we don't drop: Wall-E and horseback riding. Don't worry, I've got a spreadsheet going to keep us organized.

I've a Problem with This
I received an e-mail from the Metastatic Breast Cancer Network today that bothers me. A lot. It reads, in part:

Come October, there will be a sea of pink with marches, walks and rallies as thousands of women with primary breast cancer are feted and cheered and honored. Yet, one third of women diagnosed with breast cancer will not be seen or heard. Those of us living with breast cancer day in and day out, those of us with stage 4 disease, those of us with advanced breast cancer, will be hidden in the shadows - misunderstood, feared, isolated and ignored. Our reality is never discussed at these breast cancer events. There will be no outcry for programs for those of us with metastatic disease. There will be no one speaking up for research aimed at targeted treatments to prolong life.

The e-mail goes on to let me know that:

MBCN has prepared a packet of documents designed to make it easy for me to contact my mayor's office to get Metastatic Breast Cancer Awareness Day, October 13 proclaimed in my city.

All I need to do is respond to the e-mail.

Oh, I am going to respond, all right. But not how the organization is hoping. One, I hope this is a well-intentioned communication; but it is irresponsible and poorly thought out and written. Two, there is no disputing that greater awareness of metastatic disease needs to occur. But to say that we are invisible and outright ignored by the breast cancer community when so many are working on our behalf is destructive, disrespectful and wrong. Reinforcing this misinformation with such an e-mail to our vulnerable population will only serve to make some with metastatic disease feel more isolated and frightened. And it appears manipulative. But, perhaps that's the intention: Prompt this community to jump to the organization's chosen action. This is shameful. Finally, from a professional perspective, there are much better vehicles for driving awareness of metastatic breast cancer than having some dumb day named for it. I'm not even going to get into that one.

Tracy's Purely Subjective F Stage IV News Round Up

Pre-clinical, but interesting. Demonstrates progress upon previous models. The news source, Reuters, gives it a little heft. A true news source found it worth reporting on.
Again, pre-clinical, but this press release discusses a potential therapy that crosses the blood brain barrier. This is important because so few therapies are effective on brain metastases. That's why radiation is a go-to therapy. But, if you have a lot of brain involvement, your options can run out quick. Especially if you need to undergo whole brain radiation.
This study is clinical, albeit very early. So, lots of time for things to go south here. The press release does note that Phase II studies are already underway in other solid tumors. But, that may mean nothing at all for breast cancer. Remember: hopeful but realistic, people.
Is your p53 defective? This article is on a first-in-class gene therapy targeted to restore normal function to the p53 tumor suppressor gene. Things that jump out at me: "groundbreaking" is a loaded word whether you put it in quotes or not. If you're going to use it, you'd better be right. Also, the reference to direction on marketing the medication not arriving until early 2009: I think I can wait that long. Plus, I'm going to need some time to find out if my disease would benefit from this type of therapy.

I'm on NPR!

2008-06-27T13:36:00.003-04:00

Remember the blog by Leroy Sievers on NPR I told you about? It's called My Cancer and Leroy posts something insightful and thought-provoking each day about living with his disease. A few weeks ago, he proposed this to his readers -- Finish this sentence: My cancer... He received 390 replies. Including mine.

I don't know what made me do it. Well, really, I do. It was all those posts about how cancer has been a "blessing," and "awakening," and "taught me so much." F that. So, I weighed in on the subject.

A few days later, I received an e-mail from Leroy's assistant letting those who had responded to the post know that they wanted to put together a photo gallery of the people who replied. Would I like to send a photo?

Sure! Why not?

Well, yesterday, Leroy posted his photo gallery. 390 replies to the blog, who knows how many photos submitted, 32 photos in the gallery. Guess who was selected? Swear. Scroll down to yesterday's post!

Business as Usual: Catching Up Here

2008-06-26T21:13:00.007-04:00

Much has happened and been planned in the past week. At least I feel like a lot has happened and been planned. But, in thinking about writing it down... eh. Business as usual for me. I don't think it's compelling reading at all.

Want to start with a status update? Ducky.

I remain at 60 mg of prednisone and the freaked out lady doesn't fit the profile. I'm doing OK on it. My biggest complaint: I feel really, really good; and it's artificial. It's because of the steroids that I'm content. And it ticks me off. See, there's the bipolar aspect, right there. I wonder what I really feel like. I haven't had any roid rages. I'm definitely a bit jittery. I see the weight, although no one else seems to. My appetite, while increased, is not ravenous. I'm not overeating. Although, my resveratrol intake has increased over what it was in the winter and spring. But, that's probably a good thing, right? (Indulge me here, would you?)

On Monday, my platelets were 103. Down from 166, but certainly respectable and treatable. I received my Avastin infusion. That made me feel a bit more secure, but I wanted my Ixempra, too. New Doctor says she wants to wait until after my CyberKnife treatment in mid-July as she is trying to reduce the risk of another platelet crash. This does not sit well with me. I want another course of chemo now. I'm already a month off my schedule. I have an appointment with her next Tuesday, at which I am going to lobby for an infusion prior to then.

I had my simulation and CTs done for mapping of my CyberKnife treatment. I'm scheduled for July 14, 15 and 18. They not only made a mold of my body, which I am to lay in during treatment, they also made a mask for my face because they don't know how far up my neck they are going to have to go. It's a flexible plastic thing and I can breathe just fine in it. But it gets strapped down. Tight. It's immobilizing and will be uncomfortable to have on for a couple of hours. Whatevs. I'll deal.

Sister #2 is going to drive up from Maryland to accompany me to the first two treatments. I'm really excited about it. Sick, this is. But, I'm looking forward to hanging out with her as I don't see her nearly enough and when I do, it's always when our enormous herd of family is around. Now I have her to myself!

EGCG
I've added a new alternative therapy to my daily regimen. This always makes me nervous because there is never much, if any, clinical data behind supplements and herbs. I cannot know for sure whether something may truly be beneficial to my disease or possibly destructive to my treatment. However, I have found some loose information that indicates that EGCG may, at least, not hurt me. I intend to talk it over with both My Oncologist and New Doctor to confirm. I suggest anyone adding alternative treatments to their regular medical treatment do the same.

Metastatic Breast Cancer News Round Up

From US News and World Report, information about a study of vaccine therapy in metastatic breast cancer. There were only 19 women in this study and vaccines have proven rather tricky to make work in this setting. Here is the abstract.
A press release on the initiation of a Phase II study of CR011-vcMMAE in advanced breast cancer, which targets a protein known as glycoprotein. Just a press release announcing the company with the molecule is continuing to study it. No news or analysis here. Just, hopefully, eventual progress.
Business publication, Barron's has this article about the manufacturer of sorafenib. The company is currently enrolling metastatic breast cancer patients in a number of Phase II trials.

Addendum
I forgot this last post, and it's too cute to pass up. After we ordered The Kid's birthday cake, The Kid and I were thinking about future birthday cakes and what they might say. The Kid decided that for his ninetieth birthday the cake should read: Wipe His Hiney, Jason's Ninety! What I wouldn't give to see that cake.

Steroid-Fueled Round Up (Blog Bonus: Compelling Lead In)

2008-06-21T06:59:00.015-04:00

So many accomplished writers, despite lauded and prolific careers, were tortured by demons that challenged and shaped their work. F. Scott Fitzgerald had his booze (and a few heart attacks); painful illnesses led Hunter S. Thompson to take a gun to his own head; crushing depression drove Virginia Woolf to laden her pockets with rocks, slog into the River Ouse and drown herself, to name but a few.

Certainly, I do not place myself in their elevated realms of accomplishment or in their desperate depths of despair. But I do wonder if steroids inject not just a jittery, bi-polar, plumpness into me, but also a jolt of inspiration to my creativity and writing. Such as they are.

My head is brimming with thoughts and I need to siphon them off. I want to siphon them off. Figured I share them all with you.

Women Living with Cancer Study
Being at the advanced stage of disease that I am, after being so heavily treated with, what, nearly ten different chemos? Plus having brain involvement, I am not the ideal clinical trial candidate. More precisely, I am not the ideal Phase II or III study candidate. I would be limited to Phase I studies where the key objective is to see if the potential treatment in question does or does not kill the patient. (Pass.)

But I am eligible for other forms of studies and I just joined one that I am very intrigued with. It focuses on exactly what I asked every investigator I spoke with at the YSC Conference earlier this year: who is looking at long-term metastatic breast cancer survivors? How are they coping? What more can be done for them as they live longer without ever being cured?

UCLA's Jonnson Comprehensive Cancer Center is conducting an extension of the Women Living with Cancer study (no link to be found?!) under the direction of Dr. Annette L. Stanton. The purpose is to learn more about the experience of women who have been diagnosed with advanced breast cancer. The anticipated benefit: Information gained from the study may contribute to understanding how women live with and adjust to having Stage IV breast cancer and may guide the development of supportive interventions for women with metastatic cancer. Yippee!

As a potential participant, I filled out an initial questionnaire about my health history, mood, coping behaviors, social relationships, personality, sleep quality and physical symptoms. I also collect saliva samples twice a day over three days. Now that I've been accepted, I am being asked to think about my experiences living with breast cancer and write about the topic for 20 minutes on four separate occasions that I will schedule with the study coordinators. I received a packet with four sealed envelopes containing the topic I need to consider and write about. I cannot peek until I schedule. Three months after completing my writing assignments, I am going to complete another questionnaire, similar to my initial questionnaire and collect saliva samples again.

I'll be visiting this topic again once I start my writing sessions. Oh, I forgot to mention, I get $80 for completing the study. What do you think: shoes or shoes?

Please pass this information along to any other Stage IV breast cancer women who may be interested in participating. The project coordinator is Carissa Low and she can be reached at carissal at ucla dot edu.

Happy Thoughts
As previously mentioned in this blog, The Kid turned nine last week. Every year for his birthday, I put a cute (to me, anyway) message on his cake. For example: "What Fun, The Kid is One!," and "Yahoo, The Kid is Two!" You get the picture.

This year, The Kid and I went to Coldstone to get his cake and when I was asked what to put on the cake, I paused. I hadn't even really thought about it. No worries, though. Without missing a beat, The Kid chirped up and said, "What a Time, The Kid is Nine!" I nearly shed a tear on the spot. My big boy. A small gift I'd been giving him his whole life, and now he is my accomplice in the project. I am still smiling.

My Love is a devout admirer of the day lily, the bright orange summer perennial that lines many of our rural roads. We had some at our previous home, but we also had a lot a deer. Deer are also devout admirers of day lilies and they never failed to eat the buds before we ever saw a bloom. Now that we are country gentry and the deer tend to stay away from our open yard, I gave a small gift to my Love. Last year, I dug out all the plantings and rocks around our mailbox and planted day lily seedlings there. Now when My Love leaves and returns home, he is greeted by his own garden of day lilies. It's a small gesture, but I know it makes him happy.

I leave you with this. Don't pay so much attention to the video. Just, you know, listen to the music and lyrics and go with the Universe. It's all good.

Possible Mix-Up in Administrative Services, The Universe

2008-06-18T20:38:00.007-04:00

iIs anyone missing their day? You know the one, the one where everything goes right? Anyone?

If so, I'm sorry if your hopes and dreams went awry today, but there was apparently some sort of clerical error in The Universe today and I somehow ended up with your day. I was unable to locate appropriate contact information to correct the mistake, so I had no choice but to take it. If it's any consolation, I did use it well.

My drive to the CyberKnife facility was easy, without incident and completed in record time. While I did spend a little more time observing the structural details of the George Washington Bridge than I would have preferred, the traffic was mostly modest and flowed rather well.
I arrived early for my simulation. So, I enjoyed a nice roast beef sandwich on cranberry bread and some hummus and pretzels in the hospital cafe. While dining leisurely, I IMed friends/colleagues and kept in touch with my daily routine.
A call from one of my new nurses contained the ASTOUNDING information that I had 166 platelets on board. Nine hours later, I am still in shock and for much of the day had to fight the urge to call her back and ask her to re-run the test. Holy crap. I get Avastin on Monday!
While being simulated -- getting a mold of my body and face made -- the technician asked what kind of music I liked. Anticipating that their music library contained only easy-listening fare intended to keep freaked out cancer patients from losing their S on the spot, I told her -- Harder rock. Not classic stuff. Now. She put on some Incubus for me!
Before leaving the facility, I learned that my treatment had been scheduled. I kid you not, it starts on July 13th. Weeks earlier than anticipated, and during a time when The Kid is already planning to spend time with his grandparents. So, with The Kid with my folks, and me on Long Island, it looks like My Love gets a mini-vacation.
I've been hoping for rain. My New Jersey countryside has been hot and parched lately. This afternoon, I enjoyed rain through my sunroof and later, my favorite nature show: a glorious thunderstorm.
I ate half a sleeve of Thin Mints. (Is that bad?)

Oh, and just so you know. I did consider the fact that this day was most truly, truly mine. But, I'm having a difficult time accepting that. So I'm just going to enjoy it.

YES, ALREADY!

2008-06-17T20:38:00.006-04:00

I got the CBC drawn today, OK? No, I do NOT know the results. I'm asymptomatic and that's all I care about right now. So, bite me.

I am bound for the CyberKnife facility tomorrow so we can run a simulation. Next week, CTs of the neck and thorax. Then... we schedule treatment. That's a story. Right now they are saying first availability is in August. Hello, what? We will be working on that, be assured.

Roses in My Path?

2008-06-17T09:41:00.002-04:00

I learned today that St. Theresa reads and influences content of The New York Times.

Personal Health Columnist Jane Brody has an article today that discusses the very form of therapy that has kept me relatively stable, able to maintain a mostly normal lifestyle with a good quality of life for as long as I have. I am apparently part of a small but growing number of patients who have chronic cancer. When one treatment ultimately fails, we move on to the next. And the next. Repeat as needed.

Additionally, I would be remiss if I didn't pass along this information from Well Columnist and Blogger Tara Parker-Pope about my favorite recreational compound. Do its benefits never end?

So I start in a good place today. Say it with me: Hope is a powerful thing.

Triple Negative Breast Cancer in the News

2008-06-16T10:37:00.002-04:00

I have a number of happy things to post about and a few challenges. I want to go into details on all, but I'm tapped for time right now. So, the high points to hopefully be hit with more depth shortly:

We celebrated The Kid's ninth birthday this weekend. I got to see my son turn nine.
My Love and The Kid ran a 5K on Father's Day morning. Not their best race, but The Kid came away a raffle winner and got four box tickets to our local baseball team. He's stoked.
After infusing to 74 platelets on Friday, and starting a new ITP drug, I have no idea where I am now. I was supposed to get a CBC drawn yesterday, but never had time. I should have had one this morning, but am coordinating new employees and interviews, so I haven't made time for that yet, either. I'm also supposed to call my doctor to schedule an appointment. I guess I should get on that, too.

In the meantime, this just came across CNN and I thought the hundreds of readers who devour my incisive writing, thoughtful analysis and devotion to researching all things breast cancer would find it interesting. I hate to disappoint. I have a reputation to uphold.

Brave Decisions

2008-06-11T09:29:00.003-04:00

Since learning that I have a BRCA1 mutation, all three of my sisters have also been tested to learn their BRCA status. I don't know if it's good news or bad news that only one of my sisters came back positive for BRCA1, too. Sister Number Three, the youngest at 28, has inherited the same increased risk of developing breast cancer and ovarian cancer as I.

It's a miserable situation for anyone to be in. But my heart breaks in a more delicate way for her. Like tiny bits of fine crystal that sing the moment they shatter and scatter. She, who is in a happy relationship but unmarried, who wants very much to have children of her own, and has slogged through some challenging personal matters over the past several years, is now facing a potential -- but not forgone -- breast cancer diagnosis. And she's closing in on my age at diagnosis.

She's now in the position of having to make some of the toughest decisions of her life in order to maybe save her life. Stay aggressively vigilant? Undergo prophylactic mastectomy? Reconstruction? What kind? What about her ovaries? Do they stay or go? What will she look like after surgery? How will she feel about her new body if she undergoes surgery? How will this affect her relationship? Bilateral mastectomy means no breastfeeding should she have children. That's a joy she'll never know. A miss. Lots of missing things.

The good news is that the chick is rather resourceful. She quickly found Bright Pink, an organization that provides support to young women who are at high risk for breast and ovarian cancer. They have been a phenomenal resource for her as she navigates this new and difficult path.

And she has made a decision. She will undergo bilateral mastectomy with reconstruction. It took my breath away when she told me. The enormity and finality of the decision... and she just stepped up and claimed it. Courageous, is the only word I can think of to describe her.

GammaKnife: Take 3; Platelets...Take a Powder

2008-06-07T14:53:00.005-04:00

My gamma knife procedure went smoothly. The team was on its game and I was in and out of the medical center in about six hours. I spent the rest of the afternoon and evening sleeping. The residual effects of fentanyl and ativan will do that to you.
I'm left with two small goose eggs on the back of my head and a couple scabs on either side of my forehead. And hopefully two fried up little tumors that are withering in anguished death throws as I type.

Friday was chemo. Or, more accurately, it was supposed to be chemo. Turns out I had two platelets. How I went from 119 platelets last week to two a week later is anyone's guess. I just love all the unanswerable questions of hematology and oncology. It's just one big fat guessing game. Keeps it interesting.

My guess, which we all know is based on nothing other than pure gut feeling and absolutely no medical expertise, is that the Ixempra is finally throwing its weight around. I'm hoping the new chemo is as good at decimating tumor cells as it is at platelets.

So, after an infusion of IV Ig, I was off to an infusion center where I was given platelets. I boosted nicely to 42 and am hoping that I hold onto them. In fact, I am hoping that I continue to build them. I don't know how I'd stand another go-round on steroids.

Feelin' Groovy

2008-06-04T09:34:00.005-04:00

So: Today.

I feel really great. And that's strange to me. But, yeah. I feel kind of perky and happy and at ease with life. Oh, I know cancer is standing right behind me breathing down my neck. Jerk. But today, ignoring its threats seems as easy as a summer daydream. I am choosing not to question why I feel so... normal. Especially since I'm having gamma knife tomorrow.

Doo-too-doo! Ignoring cancer.

News
Today USA Today tells us about a study that replaced barium (which is just F-ing disgusting) with whole milk (which is yummy when mixed with Quik) as a contrast for X-rays. Turns out the radiologists couldn't tell who drank what by looking at the images. This article (scroll down) and a gallon of Quik-infused milk are coming with me to my next set of CTs.

Stuff
During Memorial Day weekend, My Love catapulted me off the back of a jet ski. After skipping across the surface of the lake, rapidly decreasing my velocity from 40+ mph to zero mph in about three seconds, I bobbed gasping to the surface minus my eyeglasses.

So. I purchased a new pair yesterday. I think they are rather rock-and-roll. But, I fear that they may appear to some (who are less fashion forward than I) as belonging to a middle-aged woman who feels the need to make a statement with her eye wear as she feeds her many cats and curses men under her breath. Whatcha think?

Finally, thanks to Peter for this awesome little time waster. IT EVEN MAKEZ TALKIN BOUT CANCR KIND OV FUN AN SILLY.

How Am I Feeling? However Will Make You Happiest

2008-06-02T16:12:00.003-04:00

I do it all the time.
I do it here, which is stupid frustrating and makes my writing weak and deceptive. It keeps me from posting.
It's not full on lying, really. But, if I crumble, it will scare people. People other than me. And I can't have that. I can't cause more pain than I already do. So, yeah, I'm doing just fine.

Lots on My Mind. And Shoulders.

2008-06-02T13:29:00.006-04:00

I've been making appointments and chasing down medical coordinators since I got my scans back. The urgency I feel appears to be important only to me. I have managed to get my gamma knife procedure booked and I will be getting my brain fried on Thursday. While the fentanyl lollipop sounds fun, it's not enough to distract me from the fact that the titanium frame will be screwed onto my head for a third time.

On the supraclavicular node front, an appointment for CyberKnife therapy remains out of reach. I had an appointment with the radiologist, who said we could definitely hit the nodes. Since then, it has been in the hands of a single insurance coordinator, who is allegedly working on getting approval from my insurance company. I spoke to her this morning and she says she expects approval before the end of the week. That's over two weeks from when I had my appointment! And, once it comes through, I am going to have to schedule a CT and then wait a few days after that for them to map the procedure. This is taking entirely way too long. Makes me feel like taking some people to task.

So, to kill time, I've been reading lots cancer news to try and find those nuggets of hope that keep me thinking that someday there will be something for me. I liked this and found this interesting.

Oh, and on the Good Things list, I am adding:

Team Hill turning in another fantastic 5k team effort. The Kid handily defended his title as top 11-and-under runner at the Run of the Mill.
Fabulous weather for hanging out with friends and family eating brunch
Warm breezes and the scent of peonies that made napping on the couch following the 5K and brunch extra delightful.
Summer. (sigh...)

Head Adjustment Therapy: Special Session

2008-05-14T18:32:00.002-04:00

This special session of Head Adjustment Therapy is brought to you in support of sister #3, who learned today that she, like me, has a BRCA1 mutation.

This one usually does the trick. Please rock out as only the hopeful can.

Head Adjustment Therapy

2008-05-14T09:25:00.001-04:00

... and repeat.

... and a Partridge in a Pear Tree

2008-05-08T11:30:00.002-04:00

On the 6th day of May, my oncologist advised me of:

Two cancerous supraclavicular nodes
One brain met, and
one met in my le-e-eft lung

Not what I wanted to hear. Nope. Not. At. All.

In fact, I am still reeling from this blow. This shit is on the move. Now I am scrambling to get in touch with my neurologist to set up another gamma knife procedure ASAP to blast the brain met, and the CyberKnife radiologist who shot my pulmonary nodes to try and get him to hit my supraclavicular nodes and lung met.

All this, of course, while continuing to work. Piece of cake. It's what I do. It's all part of my strategic approach to living with my disease. I call it Distraction and Denial. (Sounds a bit like it could be a George Bush strategy, doesn't it?)

My chemotherapy will also be changing. Avastin will stay on the menu but Abraxane will be replaced with Ixempra. It's approved specifically for use in metastatic breast cancer patients who have failed multiple other therapies. (Hey! That's me!)

I did a little digging on the drug, which was approved just last year, and am irked to find that it requires a three hour infusion. Three hours! That does not include the premeds (about a half hour), the Avastin (half hour) and possibly IV Ig (one-and-a-half hours). I'll be lucky to get into work around 3 p.m. That should fly.

This crap is really scaring me now. It's taking up way too much time to try and manage and my failure of treatments is coming faster than in the past. Not to mention the ITP is a challenge to work around and probably disqualifies me from some therapies. It also will likely make a consistent, effective treatment schedule a challenge to maintain. No, I am not liking this at all.

As if this isn't enough to rock my brain, I also learned that I have a BRCA 1 mutation. Know what that means? This shit is genetic! I am among the 20 percent of patients whose breast cancers are inherited! This particular mutation increases your chance of developing breast cancer by up to 87%, and ovarian cancer by 44%, by the age of 70. Aren't those just stunning numbers? I mean, cripes, was I seriously going to get away with living most of my live disease-free with odds like that?

Thing is, though, I am not mad about it. I'm honestly a bit relieved. This means that I didn't do (or not do) a damn thing to bring this on. It's not my overindulgence in french fries. It's not my regular imbibing of cabernet. It's not that I didn't exercise enough. This crap was gunning for me just because I exist. It truly is no one's fault.

Unfortunately, this news has also caused my family to flip out and is sending my sisters on missions to determine their own genetic status. Fantastic. Once they find out that they do, or do not, carry the mutation, then what? There's nothing they can do. Oh, sure, prophylactic mastectomy and oophorectomy. That's a bit radical in my opinion. I think it'll just add to any baseline worries they already have. It could, conceivably, get them quicker and more serious attention should they discover a lump. But geez. I don't want anyone carrying a heavier psychological burden than they already are.

So my guilt continues. I'm causing emotional pain and worry. And I don't mean over me. I mean among my sisters for their own health and the ramifications on their families. But, I dunno, maybe... this knowledge will save their lives and the lives of our children. And their children...

I'm Waiting Here...

2008-05-02T16:20:00.002-04:00

Things to do while waiting for your doctor to contact you about your scan results:

Read favorite blogs
Deplete the wine rack
Think about what to get to restock the wine rack
Annoy co-workers
Take online surveys
Buy nephew a birthday present
Pretend you are not waiting to see if your cancer is quiet or on the move
Laugh at the cats
Act totally normal

Any other suggestions? I'm open.

Scan Day Request

2008-04-29T12:07:00.002-04:00

Scans are tomorrow. Any and all strings that can be pulled with the universe are most welcome.
Seriously. Pull them. Now.

A Note from the Teacher

2008-04-25T14:55:00.003-04:00

I've been watching the flowers awaken from their winter sabbatical and the trees explode like fireworks with full coats of colorful blossoms. I'm monitoring the progress of my lilacs and expect to be breathing their fragrance by the end of this weekend.

I've made a point of basking daily in the warmth of the Spring sun, and I happily attend morning and evening concerts by the songbirds in my yard.

I have even been the happy (yet groggy) recipient of cappuccinos made especially for me by The Kid on the past two Saturdays.

Despite all this, I still am not feeling like myself. Fatigue and body aches distract me from being fully engaged in the goodness around me. The thieves. It's frustrating.

But then I found an e-mail from The Kid's teacher in my inbox today, and this has my soul jumping with joy and pride. Want to join me? Here it is:

I meant to email you yesterday, but time just got away from me. We had
morning meeting outside with Mrs. Mason's class yesterday, who has many special needs children. The Kid was so kind and so compassionate toward them, and I was so proud of him, and wanted to share my observations with you.
He was greeted by a little girl, who can only make eye contact, and the
teacher with her said to the classes, "Whoever Natalie is looking at, gets
greeted." And right away, The Kid chimed in and said, "She is looking at me!" So, the teacher rolled the ball from Natalie's hands and The Kid greeted her.
Your son has a big, kind, and compassionate heart. He is a joy to have this year!

sigh

My Fiesty Friend Angie

2008-04-24T13:35:00.008-04:00

My friend Angie had a really crappy Christmas. She spent it (and several weeks following) at MD Anderson after lung metastases knocked her on her ass. She learned during that time that she had also developed liver mets. This after spending months training and then completing a triathlon!

But, she is relentless in her pursuit of healing and her husband has been keeping those of us who love Ang up-to-date with a CarePage. This spirited girl is not to be held back and I love it! Here's the most recent update:

Angie is really in tune with her body. We got the
results back yesterday afternoon, and just like she predicted in the previous
post, the cancer is less active and in fewer spots. Dr. C and his nurse
practitioner Pam used the word "stable". We'll be getting copies of the full
reports as soon as they are finalized, but no surprises. She said last night
that her body just hasn't caught up with her mind on her body being healed. So,
we'll keep knowing that she's healed and that her body will follow.
Angie asked for a week off chemo yesterday, but Doc
said no. That's the right decision since her cancer is being kept in check. He
did promise to work on moving her to a different chemo in the future so her hair
can grow back, but he said that right now our biggest focus is to heal the
heart.
We just got back from a long weekend in Cancun. She's
looking great and her voice continues to get stronger.

Please send Angie any positive energy you can roust from the universe so she can continue beating the bejesus out of her disease.

Come on Now... Group Anxiety Attack

2008-04-22T14:13:00.003-04:00

Scans are scheduled for Wednesday, April 30th. I've got the whole lot of them (bone scan, brain MRI, chest CT, abdominal CT, pelvic CT and a mammogram) all set up to be done by 1:30 p.m.

Everyone stop eating and sleeping... NOW!

How's This for A Reality: I'm Lazy

2008-04-08T16:33:00.002-04:00

I don't have to write a single word today. (Even though I just wrote several.) I don't have to wrack my addled brain for the best words to describe my reality. Nope. Seems that I share similar thoughts about the realities of enduring a long-term scuffle with cancer with Leroy Sievers at NPR. He shares them in his blog post today.

Thanks, Leroy. I'm sorry that you get it.

Oh, Yes! Yes! Yes! Wait... No, No, No, NO!!!

2008-04-03T10:35:00.004-04:00

Sometimes the discoveries in cancer research can be so great and hopeful. And fun to manipulate in my mind. You know, bend it to fit my personal experience. Like this news about one of my favoritist antioxidants. I've been conducting my own unscientific, protocol-less, uncontrolled, completely unblinded and absolutely anecdotal study of red wine and its effects on chemotherapy for YEARS. My carefully evaluated findings clearly show that red wine totally enhances the effects of chemotherapy leading to longer term survival. However, if Dr. Okunieff manages to get funded for additional studies of red wine and its fabulous ingredient, resveratrol, I will be first in line to participate in his trial. That's right; I have no problem sacrificing myself in the name of scientific discovery. I'm that selfless.

But, wait! There is also this. Is the treatment for my disease not cruel and grueling enough? Does it not sufficiently deprive and detract from my existence? I've surrendered my thick and shiny hair (multiple times, I remind you), my manicured and well-kept finger and toe nails, my self-defining energy, my rather hot bod (shut up, you), and occasionally the contents of my stomach to fight this disease. But, fast for two days before treatment? Now you go too far, cancer! You go way. too. far.

Now if you'll excuse me, I'm off to scarf down some french fries and red wine. Oh, and chocolate. Can't forget the chocolate.

Today...

2008-03-31T11:04:00.003-04:00

I am remembering Sal. She of spunky spirit and carry on and carry a beer attitude. She and her husband Phil were our hosts at the end of my ride in the UK last September. How I will miss her quick, quirky wit and loving enthusiastic heart. How my heart aches for Phil. How lucky I am to have known Sal.

Some Hope, Some Laughs

2008-03-27T16:35:00.002-04:00

News like this keeps me hopeful even though I know the realization of a therapy is years off, if ever to be.

And this just makes me giggle every time I think of it. Viewing it brings on full laughter.

A Mutual Experience

2008-03-21T16:05:00.002-04:00

A cancer diagnosis can strain the strongest of relationships. However, a new study that is scheduled to appear in an upcoming issue of Annals of Behavioral Medicine suggests that "a husband -- as either patient or caregiver -- appears particularly influenced by the wife's frame of mind."

I don't want this kind of influence. But, the dynamic is one I've been aware of throughout my experience with the disease.

Hello, WHAT?

2008-03-13T11:07:00.003-04:00

You might recall that Avastin is part of my treatment regimen. This article in U.S News and World Report on the drug looked interesting, and I was thoroughly enjoying the information until I got deep into the story. That's when I realized the headline of the article did not prepare me for all the information disclosed. Read carefully and see if you, too, can find the words "BRAIN DAMAGE" in the article.

New This Week

2008-03-11T15:28:00.002-04:00

Monday: The return to work. It's certainly good to be back in the office exercising my brain and interacting with other humans again. However, ongoing prednisone withdrawal symptoms continue to kick my ass making me all draggy and depressed. I can't wait until this crap is out of my system.

Tuesday: I now have 165 platelets onboard. That, my friends, falls into the normal platelet count range of 150 - 450. If only it were warmer outside, I'd go for a rip on my l'il Ninja to celebrate. I don't do cold.

Here's a bit of breast cancer information for you. I learned the about the Triple Negative Breast Cancer Foundation at the YSC Conference last month. The organization is trying to raise awareness of this sub-type of breast cancer so more resources can be directed at learning and treating it. Since I am among the 15% of women with this type of breast cancer, I say go TNBC Foundation!

I Need a Note from My Doctor

2008-03-05T14:03:00.003-05:00

I am going back to work on March 10th. I am relieved, excited and nauseous. I need to bring a doctor's note with me that says I am well enough to work. I'm on it. I'm still being treated twice a week, and will be in the office late on those days.

Did I mention that I'm excited to get back to work? If this "disability" last much longer, my brain is going to atrophy.

Have I Reached a Limit?

2008-03-03T12:58:00.002-05:00

The Kid's elementary school had its annual ice skating party this past weekend. So there I was at the local ice rink, with sharp, foot-long blades on my feet, a less-than-ideal number of platelets circulating, and a glass of wine onboard. Also there were scads of quick-moving, unpredictable, unskilled kids with blades strapped to all their feet.

I took one shaky lap and called it an evening.

Out of Sorts

2008-02-19T10:48:00.003-05:00

There is no rhythm to my life. Very few things seem consistent enough to be counted on. With big projects getting out of the way and my must-do list pared down significantly, space has been cleared in my head that is quickly being filled with anxious thoughts. I have all day to myself with nowhere to be. But I have no motivation to tackle even the smallest thing that needs my attention: laundry, groceries. I am afraid I won't be able to complete everything I want to and yet, I am afraid to complete things for fear that I will be done.

I am down to 5 mg of prednisone but I continue to gain weight. It's perplexing and frustrating. My platelets were 66 yesterday, which is not good, but I had chemo last week and a drop was expected. So, we will see how they come back up this week. I am meeting with a new doctor tomorrow. She is about 15 minutes from my house. I am hoping it works out this time.

A Moment of Zen Brought to You by My Love

2008-02-13T10:31:00.004-05:00

Everybody say, "ARGH!"

Everybody say, "AHHHHH."

Good Things

2008-02-10T13:50:00.000-05:00

After five weeks in the hospital, UK Sal is home and recovering. From recent correspondence, it appears her English wit and feisty spirit remains intact.
Amazon Heart Founder Megan will be flying in from Australia to attend the YSC Conference. I cannot wait to see her! BTW: her name is pronounced MEE-gan.
Going up to My Oncologist only two times a week.
Being around more means I get to spend more time with The Kid.
My Love has almost finished painting the kitchen. Photos to come soon!
I finally got out all (well, nearly all) of my thank you notes to those who donated to support my participation in Amazon Heart Thunder UK.
Lost is back on! Oh, and so is Survivor. Did the networks really have to put them up against each other? Thank goodness for Tivo.
It's a slow Sunday in our home and I am lazing in simply being here with My Boys. I hope your day is also one to just sink into, absorb, and enjoy.

God Loves A Plan

2008-02-08T10:37:00.000-05:00

You may recall the plan to secure an oncologist closer to home where I can get the treatment I need as directed by My Oncologist. I recently began the execution portion of said plan. Then it imploded. The chosen physician decided that he does not agree with My Oncologist on the course of my care and refuses to implement his treatment plan. This despite the fact that he says he does this type of thing all the time and would be happy to work with My Oncologist. I am angry, frustrated and deflated.

The good news is My Oncologist quickly suggest a new physician-identifying strategy. This will get resolved. Just as not as quickly as I would like. Where have I heard that song before?

In other medically relevent news, my counts dipped a bit after last week's treatment, as expected, from 100 to 85. We'll see next week how they do with bouncing back. In the good news column: The thrush is nearly gone and my blood pressure appears to be returning to a more normal range.

Prednisone's biggest personal offense, extra weight, continues to plague me. I know, I know, I am obsessed with the weight thing. But, I can't help it! Twenty more mg to go and once I'm off, I can see what the true damage is.

Oh, and while I'm on the topic of weight, here's a tip I could have used about two months ago: Snacking on nuts such as raw almonds and cashews is good for you only if you ingest obscenely minute portions. Like less than one handful a day portions. Like this:

I'm sorry, that is not a snack. It's a taunt. I had been inhaling about five or six and quite possibly more handfuls each day for the past two months. Had I known this before, I might as well have been enjoying other, more satisfying forms of snackage.

Delicious Ambition: A Shameless Plug for Dear Friend and Friend

2008-02-06T09:20:00.000-05:00

Turning my thoughts from cancer to cookies today, let me introduce you to Two Smart Cookies. The women behind these beautiful and yummy treats create cookies perfect for gift-giving, party favors, desserts or craving satisfaction. I can attest to both the deliciousness of the cookies and the splendid service provided by the proprietors. Please give this start-up your consideration. You can reach them at: twosmartcookies@gmail.com

Super Tuesday Edition

2008-02-05T08:59:00.000-05:00

Do you know where your candidate stands on the issue of breast cancer? Just one more thing you may wish to consider before flipping that lever, pushing that button or touching that screen.

Round Up: Because Too Many Things Are Racing Through My Mind

2008-01-29T09:00:00.000-05:00

Treatment
Monday's platelet count was 104. This is good news because I dropped another 10 mg of prednisone the previous Friday when my count was 100 and I typically lose platelets over the weekend. This time I made a few. I also began treatment again and had an Avastin infusion along with my IV Ig. On Thursday, I will get Abraxane with IV Ig. I am now going to the doctor only two times a week. It's a huge relief and I continue to remind myself that things are going in the right direction.

Informed Cancer Patient
Thanks to a grant from the YSC Northern New Jersey Chapter, I will be attending the 8th Annual Conference for Young Women Affected by Breast Cancer next month. I am really looking forward to it and not just because the weather is going to be lot nicer in Jacksonville, Florida than it is here. This conference is a vital informational and emotional resource for young women who have experienced breast cancer. I find it invigorating and inspiring. It gives me hope for everyone living with cancer. Plus, there are friends to reconnect with and wine to be imbibed. Duh.

Friends
A couple of women I love could use some prayers for strength, courage and hope. If you've got them, please pass them along to:

My friend Sal, whom I met in the UK. She and her husband are a handsome pair of ballroom dancers as well as generous hosts. They opened their home to me and My Love on our last night in the UK and sent us back to the US with our bellies bulging from a proper English breakfast. Sal has been going toe-to-toe with bone mets for awhile and has recently been admitted to the hospital.
My friend Charnette, whom I see every year at the YSC conference. This week, she started whole brain radiation. She is vivacious, courageous, knows the power of hope and is focused on her new assault on cancer.

Consider yourself rounded up.

I Got a 100

2008-01-25T16:27:00.000-05:00

Today's platelet count: 100! I am thrilled about this not only because it's such a nice big number, but also because up until today, my recovery was sluggish and definitely unsatisfying. This is my first big boost in numbers, as this is up from 86 platelets on Wednesday. I feel like I'm making real progress now.

With regard to the prednisone, today I stepped down from 40 mg/day to 30 mg/day. Having started at 120 mg/day, this sounds great. But, I think my previously posted photos from the rooster massacre paint a pretty ugly picture of what this drug can do to a body. Which brings me to my blood pressure. It has come back out of a dangerous range into a place that is still high but, well, not dangerously high. Getting off prednisone cannot come soon enough.

My Oncologist would like me to start chemo again on Monday. I am all for it. I have been off it far longer than on it since I switched regimens last fall. I need to get back to the program.

However, there is one complicating factor: the addition of a treating oncologist closer to home who will work with and at My Oncologist's direction. The quality-of-life benefits of this move are plenty, although I am terrified to be away from My Oncologist and his amazing nursing team. They are beyond compare and they are friends. The thought of seeing them every six weeks or whatever we decide makes me sad and nervous.

Further, the doctor I have chosen to work with seems extremely capable. Heaven knows I wouldn't have chosen him otherwise. He is smart, makes well thought out and rationale arguments for his opinions, and his own ideas on how I should proceed. See where this is going? He is not exactly on the same page as My Oncologist with regard to beginning treatment again. He is resolute in solving the platelet issue before restarting treatment. Of course, My Oncologist wants the platelet issue resolved as well. But, he also knows my full history and is not being cavalier about getting me back on chemo.

Ugh. I asked for another opinion, and I got one. I have now asked the person who has been directing my care -- quite amazingly -- for over six years to deal with another physician in order to provide this care. This is a complication of my own creation.

Both physicians said to me that they do this type of arrangement often, and that there are no egos involved. They are both committed to the best care of the patient. So, they will talk and hopefully come Monday the pages will be aligned. Then, I will begin making appointments for treatment at a new office, with a new doctor, and a new nursing team.

I'd say managing life with cancer is complicated. But I don't think "complicated" is a descriptor that even skims the surface of the reality.

Roosters: Massacred!

2008-01-24T12:03:00.000-05:00

Are you aware that video game console manuals contain warnings that say too much game play can cause seizures? All that over stimulation that can mess with your head. I think a similar warning should have accompanied my kitchen wallpaper. Here it is in all its glory:

This questionable home decorating choice was not a border or an accent under a chair rail. Nope. Floor-to-ceiling and wall-to-wall. That's how much roosters were beloved by the previous owners. Gaze upon them for as long as you can take it; because now, they are gone! Thanks to this crew:

A few of us really took to using the paper tiger, spraying Dif and pulling down satisfyingly large pieces of paper. Then we got bored. Going up in high or cramped spots just wasn't working for us. Thank goodness one sister seemed intent on tackling the tough stuff.

We did supervise her, though. Don't you worry about that.

Oh, and please note: the walls are painted blue beneath the wallpaper. What's up with that?

And You All Thought I Was Unstable

2008-01-18T20:18:00.000-05:00

According to my scan reports, however, I am stable. No disease progression anywhere and regression of the brain lesion that was gamma knifed in October. I am elated!

In other news, my platelets are now hovering in the 80s. Today they are 86. I continue IV Ig three times a week for now, but am weaning off prednisone. The prednisone is contributing to high blood pressure, for which I am now taking medication, and a delicious case of thrush, for which I am taking medication and I will not hyperlink to for your dining comfort. I am also taking medication to get some of the prednisone bloat off of me as I am now more than a simple bottle of champagne, I am a magnum.

I will meet with My Oncologist on Monday and start working on a new treatment plan. More to follow on this.

In the meantime, The Sisters are descending upon my home tonight for the rooster massacre. It's going to be a good weekend.

Scan Day!

2008-01-16T18:15:00.000-05:00

Tomorrow is scan day. Please cast any and all extra positive thoughts, influence and prayers this way.

Many thanks for your attention to this matter.

With Kind Regards,

The Disabled

Like Perrier Jouët, Indubitably

2008-01-11T17:26:00.000-05:00

I am retaining so much fluid I can almost hear myself sloshing when I move. There is so much gas inside me I can feel it pressing against my skin for release.

I have become a bottle of champagne.

Road Rash

2008-01-06T22:20:00.000-05:00

The Tuesday before Thanksgiving, the day before My Boys and I were to drive to North Carolina to spend the holiday with My Love's family, I went to The Oncologist's office for treatment as per usual. And my platelets were six. What followed, I'm not even going to go into detail on. But if you're savvy, you know it involved transfusions, IV Ig and an F-load of prednisone.

And it's still going on.

However, as previously mentioned in this sad, aimless and severely neglected blog, I did learn a few things in the U.K. One of them being, try as I may, I really, really, most honest-to-goodliness, cannot do everything. As much as I chafe at the very thought of not being able to do all I wish, to the standard of performance I expect, at every single given moment I expect it, there is a small portion of my stubborn, willful, driven brain that has the capacity to recognize the facts. The facts being:

I'm getting creamed and I am beat tired.
I need to get this platelet thing under control properly and stop expecting to succeed in gaining that control by forcing My Oncologist's plan of action into my already overcrowded schedule.
I need to take the opportunity to heal and give myself permission to take the time I need to regain my strength and sanity without undue burden from other obligations and stressors that detract from my healing.

In short, for the first time since my mastectomy, I'm taking a break.

A friend at work who heard me out on this put it this way: "Well, you know what they say. Let go or get dragged." She pretty much nailed how I had been feeling. Dragged by my illness. Dragged by the platelet complication -- again. With the addition of these things to what is typically called life, I felt I was being dragged by a semi that had ripped me off my feet and yanked me bouncing and banging down a gravel-covered country lane at a supremely excess speed.

So, brilliant me, I let go.

I've been on temporary disability since December 1. I expected to be back at work right after the New Year. But I'm not. My platelets have rebounded and I am in a treatable range. But they are not stable. So, I continue IV Ig three times a week and I am on a desperately distressing level of prednisone. (Distressing for me, you understand, right? My Oncologist seems to be handling it just fine.) I am hoping this is my week. When my platelets boost, we talk about starting chemo again, and we nudge the prednisone down a little more.

Some other positive things:

I have an appointment with an oncologist who is about 45 minutes from home whom I am hoping will agree to consult with My Oncologist as part of my already established healthcare team and provide me IV Ig treatments instead of me bombing up and down the highway three times a week.
My roid rages have been significantly curtailed in the absence of my usual stress level. Oh, be assured, I am a nutter and can still rage with great ferocity. But, I am a much calmer person than I was in the previous go 'round. No other comparisons allowed. If I were being graded against truly sane people, I'd screw up the whole calm bell curve thing.
I have dug out from a huge avalanche of household obligations and gotten myself organized like I haven't been personally organized in years. I even reinstated the service of my Filofax, which I love and regret ever putting in a dark, desk drawer. Electronics are not all they pretend to be with their shiny metal sparkly lure. Paper, and leather, and ink are so much more tactile, personal and satisfying.
Getting ready for Christmas was fun! For the most part. OK, once I allowed myself to enjoy it. Having time off meant I didn't have to cram in shopping, or decorating. Or, if things didn't go my way or I couldn't find something, it wasn't such a big deal because I always had time to try again the next day, or take the time to go elsewhere. I wasn't as rushed or as stressed about things.
I have baked and cooked. I forgot that these are things I enjoy. So I did them! The Kid and I made four different kinds of cookies for Christmas and we had a blast doing it. I've enjoyed cooking for My Boys and even have leftovers in the refrigerator. I'm afraid I may have to throw things out. I can't remember the last time this house had too much food.
My Love and I have conquered more of our home thanks to my prednisone and his oft tried, well worn patience. The beer can collection, keepsakes, memorabilia, children's toys and other items that rightly belong in the attic have been evicted from our guest room and put in the attic. We now have a place for our guests to stay comfortably. Further, the living room portion our house, which I had taken to calling the indoor shed, has also been emptied. My Love has ripped down the garish pink wallpaper, is putting lights in the ceiling and is considering wall colors. When he is done, we will have a game room. Or, as My Love wishes to call it, a man room. Whatever.
My sisters and I have scheduled a rooster massacre. How I have longed for the death of my rooster kitchen and all of its dizzying, blue, chickenwire roosteriness! Soon it will be gone and the walls will radiate a peaceful sage green and a tiny bit more calmness will settle into our home.
Best of all, despite being off treatment for more than a month, my tumor marker has taken a significant dip. A tumor marker is sort of a monitoring device. It assesses the amount of a particular protein that tumor cells shed. So, theoretically, if there is a lot of this protein, then tumor cells are likely active. Or abundant. Or something that means they are up to no good. My markers are usually pretty accurate for activity. Apparently they had been up in the 80s recently. The latest report I have says they are now at 39, which is in a normal range. Nice.

There's more, you know? I think I just need to stop for a bit. I think I got quite a bit out.

Today...

2007-11-02T10:42:00.000-04:00

I am remembering Dee.

And Dona.

And Shannon, and Mary, and Lisa, and Barbara, and Donna, and Christine, and Angela and Hope and my grandmother, and I'm going to stop making this f-ing list right now.

Today...

2007-11-01T11:50:00.000-04:00

I'm remembering Dona.

The Disease that Keeps on Taking

2007-10-30T10:10:00.000-04:00

This is my friend, Dee, whom I met in the UK this summer. She was our Queen Sweep who, from her perch atop her Buell, safely kept the entire lot of us together as we cruised through Scotland and England. She loved bopping around on that little thing, with her stuffed Eeyore strapped onto the back. Serene and easy to be around. That's Dee.

This is my friend, Dona, a woman with a steely will more powerful than a Mack truck. Dona takes no prisoners when it comes to fighting her disease. She appeared in the Beautiful Eight video with me and she has two gorgeous little boys.

Both Dee and Dona are doing very poorly.

Do you think that the universe hears your thoughts and can pass on strength and feelings of peace to those who need it? If so, may I request your good thoughts for Dee and Dona?

Suddenly, It All Makes Sense

2007-10-26T15:19:00.000-04:00

I woke up with a crushing headache at 2:30 a.m. and promptly threw some high-quality pharmaceuticals at it. One of the benefits of being chronically ill is having a rather well-stocked medicine cabinet. My assault was apparently lacking because by the time I was supposed to get up for work, my head was immovable. More pharmaceuticals and by 10:00 a.m., I feel up to getting out of bed.

I manage to get myself showered, fed and off to work. But, I have this thick fog around me. I feel hazy and trying to focus my thoughts makes me want to put my head down and sleep. If I direct my thoughts down one path, I inevitably end up veering helplessly off and tumbling down onto another before I realize it. Suddenly, I'm lost and need to clamber back up to my original thought. It's work. And, sometimes embarrassing.

I also feel a bit like I could be getting a touch of the flu. A bit achy and rundown. Yeah, the weather is dreary and cool. But, really. What's my deal?

Ah, yes. I've begun chemo again. So quickly I forgot how poorly you make me feel old friend. How did that happen? Never you mind. Just go ahead and do your work. I know you can't help what you are. I'll try and figure out how I am going to put up with you again. No hard feelings. Just some pretty miserable ones.

The Gamma Knife Update

2007-10-22T14:11:00.000-04:00

My Love and I left the house at 4:30 a.m. on Thursday to drive into NYC for my Gamma Knife treatment. My Mom was at home to take care of The Kid and see him off to school. The whole affair went off quite smoothly from admission through discharge. But, I may not be the right person to ask as I was under the influence of Fentanyl and Ativan. I couldn't have cared less what happened that day.

The entire radiation procedure took approximately 20 minutes (so I recall being told) and the "other site" that showed up on scan is still unidentifiable and apparently smaller. So, it was left alone to die a miserable death by upcoming Avastin infusions.

For the rest of the weekend, I did generally nothing. My Mom really helped out with meals and entertaining The Kid. It was great to have her there. Especially since I was having math issues and couldn't figure out just how many of which pill I was supposed to be taking at what time. I'm chalking it up to transient, post-treatment issues. Although, I did do laundry. I'm always doing laundry and there is very little math involved in that. Except addition. Finally, there was The Kid's soccer game on Sunday. Another beautiful, but un-fall-like day. Cripes, that was a paragraph of nonsense, wasn't it?

As an aside, I wonder if they sell these by the pound. I could get a good deal and it seems a lot easier than drawing them on every day.

The Fully-Follicled Can Have Such Cold Hearts

2007-10-16T16:40:00.000-04:00

I told My Love that my hair was quickly fleeing my head and that I needed an appropriate hat but soon. His response? "I'm sure you can find something laying around the house."

It doesn't end there.

I told The Kid that my hair was falling out and showed him some evidence. His response? He rolled his eyes. Oh, yeah. Rolled his eyes. It is only his cuteness that assures his continued breathing.

I Need a Hat

2007-10-11T16:10:00.000-04:00

F-ing hair is starting to fall out. As I will not be wearing any stupid wig, Dear Friend and I have been doing some research on the right hat for me. So far we have come up with this, this, this and this. While I happen really, really like one of them, I don't think it would be welcome at work. Or, any public place for that matter. I remain open to suggestions.

'Tis the Season

2007-10-09T13:31:00.000-04:00

I hate breast cancer awareness month. Mostly, because I am aware of breast cancer every single month and because I hate this particular promotion. But, then I have major kitchen issues anyway.

I am, however, hitting a few events this month. How can I not? One is a bash that is always fun and offers an intriguing swag bag. At least, there was that one year and that one item... The other is an educational conference focused entirely on the metastatic population. I'm looking forward to hearing what progress is being made in treatment options for metastatic women, and to catching up with and making new friends.

If you're interested, you can support the Young Survival Coalition here and the Metastatic Breast Cancer Network here. Go ahead; 'tis the season.

Thursday, October 18th

2007-10-08T14:12:00.000-04:00

I am scheduled for gamma knife next Thursday. I have to be at the hospital in New York City at 6:00 a.m. Maybe I should go to the city Wednesday evening, hang out at the Bubble Lounge until closing and then go to the medical center afterward rather than try to get in from New Jersey on Thursday morning. But, what would I do from 2:00 a.m. to 6:00 a.m.?

This Weekend's Accomplishments

2007-10-08T09:44:00.000-04:00

It was a very good weekend. I completed everything on my to-do list and even did something extra that I didn't anticipate. See if you can guess what it was.

Sipped coffee on the sidelines of a dewy soccer field while watching The Kid work on his skills. The big happy grin on his face reflected in my own.
Had a school/soccer friend of The Kid's over for the afternoon on Saturday and enjoyed watching the boys play football in our yard on a sunny, unseasonably warm fall day.
Performed a minor makeover on our flower beds by yanking weeds out hand-over-fist to the tune of one ginormous heavy-duty garbage bag. My rose bushes are happy again, as are what was left of my peonies, which have been mercifully put out of their misery for the year.
Enjoyed the company of friends we hadn't seen in two years. Our patio was the setting for burgers, dogs, wine, juice boxes, brownies and lots of catching up. The kids, who have known each other since they were six months old, took turns bombing down our driveway on one of the "grown-ups" long boards.
Fulfilled the role of track support for My Love, who participated in a skill-honing advanced rider training program at Pocono Raceway on Sunday. My Love rode his/our bike to the track, while The Kid and I followed him in the car with his tools, lunch, camera, clothes and anything else he needed for the day.
Went around the track faster than just about anyone else when I got on the back of professional rider's bike. Have you ever seen the world sideways from a motorcycle? I recommend it.

What Not to Ask

2007-10-05T19:14:00.000-04:00

Upon learning about a cancer patient's disease progression, do not ask questions such as, "So, this is something that they'll just treat and it'll be fine, right?" Or, similarly, "But, did he/she say that this really isn't such a big deal?" Additionally, after a patient's consult with a specialist, do not ask questions such as, "So, this is going to do it, right?"

Why? Because you are asking the patient to assuage your fears. Not only can the patient not do that, they likely have no interest in doing so. They are having a hard enough time keeping their own fears in check. Managing yours is your problem.

I offer this helpful reminder: Stage IV breast cancer is disease that has left the primary site and has invaded other parts of the body. Current imaging techniques may not allow physicians to see all of those places, but in all likelihood, the disease is somewhere, even when scans come up clean.

So, I will be having gamma knife to provide local control to specific sites in my brain. Is it going to be fine? No, it's not.

I have to get a frame screwed to my head and keep it there for about five hours while they MRI my brain and then take the time they need to map the radiation. Further, during the MRI, which is going to be more finely sliced than my routine MRI, there is the possibility that they identify additional sites. Should those sites be numerous, they'll bag the whole gamma knife thing and start considering whole brain radiation which, just like it sounds, is when they radiate the entire brain.

But, let's not go there. Let's take the most positive scenario. After the scanning and mapping and waiting, I'll get my head screwed down to the treatment table so I am immobile while they shoot beams of radiation at my head.

But before then, I get to think about this for the next week or so while things get scheduled. Of course, ruminating on this will be even more fun while in transit to the medical center for the procedure in New York City metro traffic.

After this procedure is done, I will able to resume my standard I-have-incurable-cancer anxiety level. I will continue to need chemotherapy as it is the only tool I have to try to keep my disease at bay.

I am a hopeful, smart, spirted and determined person. I am not an ignorant person or worse, one who is in denial. I cannot make this situation better for anyone. Don't ask me to pretend.

Healthcare Management: My Other Job

2007-10-03T21:48:00.000-04:00

There are multiple reasons the phrase "on a daily basis" is included in the sub-head of my blog title. Cancer isn't just with me every day because it is, well, with me every day. The f-ing disease (Yay! I've been dying for a good opportunity to use that term again for weeks!) demands daily attention on some level. Okay, so the brain met thing elevates activity above baseline administration. But, still. Here's what's happened this past week:

Called Rad-Onc #1 as recommended by My Oncologist only to learn he doesn't accept my insurance.
Researched gamma knife facilities in New Jersey. Found a place only a short 40 minutes from home. Spoke at length with a member of the staff to find out what is needed from me to get on the books and move things forward. Called My Oncologist to have said things faxed to the facility. Called to follow up to confirm receipt of fax and heard nothing for three days.
Called My Oncologist again to get another recommendation for a gamma knife facility. Called Rad-Onc #2 and spoke at length with... see above. However, this time I got a call back within a day-and-half with an appointment for consult this Friday.
Received call back from the New Jersey site after booking the consult with Rad-Onc #2. They had an appointment for me on Friday. Imagine the staff member's surprise when I told her that they didn't move quickly enough for me and I have moved on to a more responsive facility.
Called hospital where scans were done to request disk of brain MRI to bring to Rad-Onc #2 for viewing at consult.
Drove an hour-and-a-half to hospital during rush hour(s) to pick up disk of MRI images.
Had STAT CBC drawn this morning before going into the office. I'm eager to take another step down on the steroid and My Healthcare Team is interested to know if my platelets are holding following infusion of Avastin last Friday.
Having not heard from My Healthcare Team about the previously mentioned STAT CBC, I follow-up via phone this afternoon and find that they haven't received the results of my STAT CBC. My Healthcare Team says they will follow up with the hospital and get back to me.
I missed a phone call from THE Head Nurse because I was in a meeting. She leaves a cryptic message saying I should call her back in the morning to talk about "what to do with the prednisone." On the up side, she didn't say, "Get your ass up here for a platelet infusion or more IV Ig."
What? Isn't that enough?

An Introduction

2007-10-02T06:12:00.000-04:00

This is my friend Dikla. She's amazing.

My Friend, St. Terese

2007-09-30T20:15:00.000-04:00

No, it's not Armageddon and yes, I am still in quasi-control of my mind. My mistrust of organized religion aside, today I am honoring a woman of spiritual strength who brimmed with optimism and love. Someone who inspires me.

St Therese of Lisieux, the Little Flower, is a Doctor of the Church and today is her Feast Day. Although she is my namesake, it wasn't until my breast cancer diagnosis that I began to get to know her. Since then, I have come to rely upon her when I am fearful and doubtful. I also strive to follow the example of her life to guide my own. I even make near-daily attempts to put her "'little way' of doing ordinary things with extra-ordinary love" into practice. And, what I find most comforting about St. Therese, is that if I take the time to look for evidence of her, I often find it.

How I Feel

2007-09-27T15:31:00.000-04:00

Me, on steroids.

Scan Results

2007-09-26T13:24:00.000-04:00

I suppose completely clean scans were too much to hope for considering what I've gone through this summer. But you know me... hope, hope, hope. All things considered, though, My Oncologist and I realize I came away in better shape than I could have. At least, that's what I'm telling myself right now.

The results:

Bone scan: Clean
Chest CT: Previously radiated pulmonary nodes continue to show decrease in size. No new evidence of metastases.
Abdominal CT: Clean
Pelvic CT: Clean
Brain MRI: 6 mm nodule in left anterior temporal lobe. Possibility of additional puncate mets in deep right parietal lobe sulcus cannot be ruled out.

So, game plan: I am going to have the 6 mm nodule duly fried via gamma knife as quickly as possible. After nearly three years of faithful service, I am ditching Taxotere and adding Abraxane to my treatment regimen. It will be given in combination with Avastin. The hope here is that shaking up the chemo will be what I need to cream the possible mets that cannot be ruled out and get me into a stable holding pattern. Again. A long one, please.

Assuming my insurance company goes with the flow, I start my new regimen on Friday. This coincides with my last planned IV Ig treatment. I am now down to 20 mg of prednisone per day and today's platelet count, just for the hell of it, is 125.

I'm moving forward, peeps. Keep up.

Sophomoronic

2007-09-21T14:23:00.001-04:00

I love that there are words that make you sound intelligent when you use them, while at the same time, convey that you have the sense of humor of a 12 year-old boy. A word, for instance, like "sophomoric." Let’s use it in a sentence, shall we:

"Tracy seems like a bright girl, but she's totally sophomoric."

Now for some context. As I attempted to lay as still as I possibly could in the bone scan machine last Thursday, with the scanner mere centimeters from my face and chest, I had just one word in my head: asshat.

Questions you may have at this point include:

Why is the only thing in your head the word "asshat?"
What, exactly, is an "asshat?"

Because earlier in the day, while my sister Jamie was calling me one via IM, Dear Friend was looking it up for me on urbandictionary.com:

Asshat
A close cousin of the ass-clown, typically identified by a jovial expression and an outward misunderstanding of how he/she is perceived, combined with a generally misguided conception of what is sociably acceptable amongst his/her fellow peers. Said persons' frequent attempts at humor usually lead to he/she making an ass out of his/herself. Not to be confused with ass-hole.

"Quit throwing pennies at that homeless man, you asshat."
"Hey asshat, thanks for double parking."

The bone scan takes twenty minutes. I thought for sure the image was going to come back with a huge blurry mess where my head and chest are supposed to be. You've no idea the ginormous quantity of restraint that was exercised to wrestle my brain to more mundane thoughts.

JOY!

2007-09-20T23:36:00.000-04:00

I met James nearly 12 years ago on the shoulder of Route 80 somewhere in Ohio during the dead of night. With my newly acquired husband’s approval, the 19-year-old kid opened the passenger-side door of his car for me, got into the driver’s seat and proceeded to drive me further into the night and rural Ohio to a run-down motel. My Love was left behind on the roadway with a handful of Mitsubishi drag racing enthusiasts to figure out a way to get his car, which was blowing oil all over the highway, to the same run-down motel before the start of a race event taking place the next day.

During the drive, James and I talked easily and a lot. I, being a mature 28, was taken by how genuine he was; how truly kind and decent. And, at such a young age! I didn’t know it at the time, but I was just getting to know one of the best friends I will have in this lifetime.

Technically speaking, James is My Love’s friend. After all, My Love did meet him first. And there is all that boy stuff: liking cars, having a passion (some would say death wish) for scuba diving, enjoying a cigar here and there. You know. But James quickly became a part of our family, and his presence and importance in our lives has only grown over the years through moves, the birth of The Kid, my diagnosis and other crap that life throws your way, good and bad. James has been there for us with friendship, support, love and fine beverages.

So, I’ll bet right now all you single ladies in the house are just dying for a date with this paragon of manhood. Well, I’m sorry to inform you that, in addition to worming his way into our hearts and lives, James pulled the same stunt with Lovely Sarah. Only, I’m guessing the strategies were somewhat different. Ever since I met him on the highway that night, I’ve wondered if James would ever meet someone who would truly appreciate the caliber of kindness and love he could lavish upon her, and who would also be eager to heap it right back upon him. Lovely Sarah, I am so happy to say, is that person.

Lovely Sarah also has a kind spirit and a generous heart, and she is joyously, wickedly fun to be with. She shares her goodness just as quickly and easily as James. Plus, she’s a great vacation pal, as she totally gets the importance of good margaritas and massages when boys go off and do dumb boy stuff.

So imagine the joy that was concentrated in New Hampshire last weekend when James and Sarah were wed in front of so many friends and family members who, like our family, are the happy revellers in the combined love that can only be created by the pairing of James and Lovely Sarah. Imagine the joy that will continue to be and grow around all who know them, simply because they have found each other.

Scan Day!

2007-09-20T07:12:00.001-04:00

Every three months I get a bone scan; brain MRI; and CTs of my chest, abdomen and pelvis. My Oncologist orders these tests to check to see if my treatment is still working or if there are indications that my disease is progressing. I should have had these done before going to the UK but, I was not going to give potential bad news the opportunity to ruin my trip. The fact that I have been off therapy since June means the little F-ing cancer cells in my body have pretty much had the run of the shop for three months and I am nervous to see what, if any, kind of havoc has been wrought.

I called the hospital yesterday to schedule the scans and unbelievably they asked me to come in today. I usually have to stew a week or so before I can get in. I love these people. They have been seeing my sorry face every three months for seven years and they work with me. My large number of tests does not usually get done in one day. But as soon as these folks find out it's me scheduling, they try very hard to arrange things so I can get everything done before 3:00 p.m. It's fantastic and I make sure to send them a thank you card after every go round.

Dear Friend, with her somewhat annoying habit of always seeing the bright side, reminded me that being able to get my scans done so quickly means that I have less time to get all anxious and worked up about them. But, I apprised her that, being the highly-skilled nutter that I am, I am fully capable of getting two weeks’ worth of anxiety packed into 24 hours. I am that efficient.

One thing I am looking forward to: Taking the R6 up to the hospital. Woo Hoo!

Anyway, off I go. Wish me luck.

Platelet Watch Summer 2007 (The Sopranos-Style Finale)

2007-09-17T22:03:00.000-04:00

That’s right, I’m correlating my little summer drama to the Emmy Award-winning sort created by genius David Chase.

First, this drama's final details:

Today’s platelet count: 108
I started chemo again last Wednesday. It was just the Taxotere. Avastin is on hold because, as a biologic therapy, it may be complicit in causing the platelet problem in the first place. Once things are more stable, I believe we are going to give it another go. I hope so. I progressed on Taxotere monotherapy last year and I want my Avastin back.
A new plan for IV Ig is in place. I will continue this therapy three days a week for the next two weeks. During this time, I will also wean off the steroid. This revised plan should help my body continue to strengthen its ability to create platelets and reduce it reliance on this F-ING steroid safely and, critical to depriving My Love of bragging rights to justifiable homicide, sanely.
Scans will be scheduled before the end of the week.

As for the finale to Platelet Watch Summer 2007, my correlation works only if you are among those who, like me, believe that life goes on as usual (fictionally speaking) for Tony and the fam despite being abruptly and not at all neatly denied the opportunity to watch the insanity any longer.

Platelet Watch Summer 2007 (Penultimate Update?)

2007-09-09T22:03:00.000-04:00

I made it back from the UK with 56 platelets on board. This, apparently, is good news as it demonstrates a trend toward stability.

My dear, dedicated and highly professional healthcare team were taking bets on what my CBC was going to come back with when I showed up in the office for the first time in over two weeks last Wednesday. Not sure how I feel about the fact that THE Nurse was pegging me at 18. Others were more optimistic. The winning healthcare professional (Price is Right rules apply) came in at 50. Her prize: getting to administer my IV Ig and monitor me for the morning. That will learn her.

Friday morning found me back at the oncologist's office, this time with 70 platelets! That's treatable range folks. So a plan has been devised:

IV Ig last Friday and orders to stay on 60 mgs of predinsone through the weekend.
Tomorrow should be my final treatment of IV Ig and I will hopefully begin weaning off of the prednisone.
Wednesday (oh, please; oh, please; oh, please) I will be back on my regular chemotherapy treatment for the first time since June.

So things are looking really, really great right now. And, I am so happy that a sense of normalcy is returning. Funny that, right? My normal life with cancer.

However, be assured that despite the slowly enveloping calm, I've got a full frontal view of my next anxiety attack: scans that should have occurred in August will be scheduled shortly.

The adventure never ends.

The End of the Journey in Sight

2007-09-02T03:10:00.000-04:00

It's Sunday morning in Beckenham and I am enjoying a slow morning at Sal and Phil Baker's home with My Love. Phil should be starting breakfast soon! Last night I had a soak in their bath. It was heaven! Then, we all sat on their soft and beautiful Turkish rug and chowed down on pizza and beer. It was a cozy evening with what feel like old friends. It was just the thing after the intensity and energy of the ride.

My Love and I will be leaving soon. We'll grab a train and head for Heathrow early this afternoon. I'm going to miss being here, but I am coming home with so much more. And I'm going to share it all with you.

See you soon!

A Special Shout Out: To My Duck!

2007-08-30T13:04:00.000-04:00

Hello, Baby!

Mama misses you and thinks of you every single day. I am waving toward to ocean and am picturing you playing in the surf with your cousins. (Hi, Lily and Rowan!) Jason, did Nathan have a great birthday? I love you, baby. I'm going to see you soon and give you lots and lots of kisses.

Good night, sleep tight. Don't let the bed bugs bite!

See you soon, Stinky Pea!

Love,

Mama

Happy Birthday to Me!

2007-08-26T03:42:00.000-04:00

I didn't think I'd see 40. Seeing 40 from a Harley in Scotland is beyond compare.

I've gotten some good wishes from the other chickies here and decided that I would love some more. OK, lots more. Please post heartfelt birthday wishes below. Be sure to include the part about how inspiring I am.

And it case it isn't coming across in my desparate 15-minute typing increments, please know how much you have all inspired me. I couldn't have made this trip without you all.

LOVE!

Today's Laundry List, Plus One for Pop

2007-08-25T17:45:00.000-04:00

We had to be ready to go at 7:00 a.m. this morning. It is now 10:50 p.m. and I have no idea where the time went!

Today we road from Killen to Aviemore, with a stop to lead a HOG rally along the way. It was Amazon Heart that lead the way. The Scotish Highlands are beautiful. They do remind me of the Lake George area of New York. Lots of piney things, but with gorgeous heather tucked in here and there for prettiness. If they have a lot of something in Scotland, it's sheep. That's not a joke. So I found myself singing Bah Bah Black Sheep to myself much of the time. However, you should know that this is not a PC thing to do. You may only say "fleecy sheep" now.

Oh, I also learned the way to say "F Off" with a simple hand gesture. This was purely by accident, as when we would ride past other bikers, I'd toss off one of my American-style peace-out signs down to the right. Apparently, this can be misconstrued as F-off because a backward peace sign means just that. Yay me and my international relations skills.

Also attended the Scottish HOG rally evening festivities. FANTASTIC! I heard these amazing Scottish bands that rocked Highland style. Awesome stuff. I wore my Harley shirt with sleeves and made lots of new friends. Can't get them here. Between sets, they played good old American rock. Including Bon Jovi! Woah-oh, we're half way there! Woah-oh, livin' on a prayer! Fun to watch the Scottish rock out Jersey-style.

And, just for Pop: I ate haggis. And it was good.

Amazon Heart Thunder UK 2007 Blog

2007-08-23T13:58:00.000-04:00

Come meet all the awesome women on my ride and see what we're up to here. Megan is doing a much better job of keeping up the blogging than I.

Practice Ride No. 1: Step One -- Dump Bike. Check.

2007-08-23T12:49:00.000-04:00

Before you all lose your shit on me, know that I wasn't even out of the parking lot at the Harley dealership and all I have to show for it is a slightly skinned right knee. Plus, it wasn't a good bike for me and I knew it, but so many other women were nervous and changing bikes, that I was trying to be flexible.

So, my previously allocated Night Rod was reallocated to someone else who felt more comfortable on it. I was asked to try the Street Rod. Looked cool to me. The pegs where where I used to them, but, when I sat on it, it seemed a little tall for me. We couldn't take them out until they were allocated, so I just figured if it was tall, then I would just count on being able to throttle it. See, I had a plan.

Any way, I was the first rider in the first group behind the leader. So, I am lined up first to go out right behind Amazon Heart-founder, Meredith. There are 18 women behind me, two who just go licenses yesterday, waiting to see how this is going to start off.

So, I open the throttle, start going, engine cuts, I catch it. I start it up, throw the throttle wide open -- just in case it needs a good clearing -- and ease of the clutch. And the engine cuts. And now, because my feet don't touch the ground, I am trying to hold up a bike that feels like 1,000 pounds that is tipping to my already compromised right side. And... down it goes. Broke the end of the brake lever off, too. Harley dude comes over and tell me that the throttle is really touchy on this bike. Great. Information I could have used previously. Thanks.

So, of course, I hop back on. Really open the throttle and follow Meredith off down an empty road on a college campus with the rest of the women behind me. And... the engine keeps cutting out. I just couldn't seem to get the hang of keeping the throttle open wide enough and stalled every few seconds.

Meredith hops of here bike -- the Night Rod -- and asks if I'd like to switch. Damn straight I do! Of course, this bike has forward controls and my feet feel all funny on it. But, it's low to the ground, my center of gravity is great and I can stand up on it. Guess what? I can ride like a champ. LOVE IT!

So, the group completed its brief tour of Edinburgh, which, by the way, is just spectacular. I'm so in love with this place. And, we returned safely back at Pollack Halls, which is at Edinburgh University. Everyone on the trip is amazing. Everyone has come for their own reasons, but in spirit, there are all women who hate to live with limitations, take on challenges, have great respect for other people and are just dear.

I have been adopted by an Australian woman, Suzanne, whom I believe my mother has sent. She is forever asking if I'm tired and making sure I feel OK. She is also quick with a glass of Cabernet. We get along just fine.

I have a 30 minute Internet card here. And I've got 12 minutes left despite furious typing. So, I am not going to proof as well as I should. And I am not going to put in links for the bikes now. So, if you're interested, you're going to have to do some googling yourself.

Oh. One more thing. No symptoms of low platelets. Honest to God and God bless prednisone.

Cheers!

Platelet Watch Summer 2007 (Living What I Say I Do Edition)

2007-08-21T08:05:00.000-04:00

Tracy and Dear Friend via Blackberry, 10:00 a.m. yesterday.

Tracy: I'm going to have a fight on my hands. I dropped to 79.

Dear Friend: Aw, F-er. Only six, though. You didn't want those six. They were the bad six.

Tracy: It's not going to be good. He's going to have to work with me. He's gonna be pissed.

Dear Friend: Aw, man. Can you up the pred while you're gone? I know you wouldn't like it, but maybe it would make him feel better? T, I'm sorry. You shouldn't have to fight for this.

Tracy: I have to tell him I'm going. Then ask him what he's gonna do about it.

Dear Friend: Definitely!

***

10:54 a.m.

Tracy: I am so conflicted. Nurse says the number is fine. It's the instability that is a problem. I'm not showing I can hold them. And I won't have IV Ig for two weeks.
Dear Friend: Is there anything you can do or bring on the road? Or someplace you can stop along the way?
Tracy: Not fair to the other riders. This is ridiculous. Why not a clear yes or no? Why the ambiguity?

***

11:27 a.m.

Dear Friend: Did you talk to the onco yet?
Tracy: In the waiting room. (Pregnant pause.) You know I'm going to do this, right? I don't have the luxury of "there is is always next year." God. What am I doing?
Dear Friend: F yeah you are going lady
Tracy: I can't live like that. I can't live with the regret. I'm so conflicted.
Dear Friend: Well, just see how the convo goes. See what he thinks.
Tracy: How can I "defy breast cancer on a daily basis" and then... not?

***

11:54 a.m.

Tracy: He's letting me go.
Dear Friend: You just got a yaaaaay from Ops. I am so happy for you! Are you?
Tracy: Now, I'm terrified.
Dear Friend: Why?
Tracy: Because I am going to do this. I'm going to go.
Dear Friend: You can't think about what-ifs.
Tracy: Nope. I have to go for it.
Dear Friend: You're going to be a rock star.

***

In my mind, there is no choice. I set this goal and started looking forward to meeting it a long time ago. Yes, I knew complications from my health could jeopardize it. I said as much at the very suggestion of this adventure. But, family and friends recognized this opportunity in all its fabulousness, gave me encouragement, support, (and money), and I set about doing what I always do: trying to live my life the way I want to as best I can.

However, my Healthcare Team, God bless their dedicated, brilliant, supportive souls, has very legitimate concerns about this. They want this for me; they get it. But, their responsibility is to supporting my overall health and keeping me alive as long as I can and want to be as best they can. And my perception of ambiguity does not exactly jive with theirs. Letting me run off halfway around the world on a motorcycle without the support of IV Ig for two weeks hardly skims advisable. In fact, it could set me back and, possibly, put me in a critical situation far from their skill and knowledge. Not to mention their way-too-intimate understanding of me, my health history and how I operate. I am setting out on this adventure fully aware of the risks I am taking. Not only am I temporarily abandoning my IV Ig and stepping out of immediate reach of my Healthcare Team, I am also delaying a return to chemotherapy. Remember that stuff? It's terrifying, yes. But last night, I also realized it is also so F-ing invigorating! Sort of like this:

When I am out on my bike, I work on my leans. Lifting and tilting myself over left or right to get the most out of every single turn I make. Mind you, I suck. But, the thrill is there and my adrenaline pours. I know that with each turn I make, I learn and improve. It's risky and challenging. But it feels awesome!

So, when I was sitting in the infusion room yesterday morning, trying to figure out how and if I could do this, I had a lot of things running through my mind. There was the thought of how on earth could blasting up and down 287 three days a week be any less dangerous than what I intend to do? Then there was: I chose My Oncologist six years ago based on the fact that he was willing to doing things differently, and take well-reasoned but definitely bolder action that other physicians. How can they expect anything else from me? Then, oddly, I thought of someone I hadn't in a few weeks, Miles Levin, the teen aged cancer patient who has given thousands the splendid gift of his passion and joy for life as an example through his oh-so beautifully written blog. He died this weekend just shy of his 19th birthday. And, of course, there are the Beautifuls who have died, Angela, Mary, Shannon and Christine. There is also Lisa M., a driven, vivacious, F-cancer woman if there ever was one. One of my first YSC friends, she died four years ago this week. There are also those who continue to live with this disease, shoving it back fiercely and doing the things they want to maintain and defend their stake in own lives. Like Angie, who trained like hell and just completed a triathlon (!!!) and Dona, who has has the love of darling little boys to sustain her mets-threatened bones as she contemplates her next assault on her disease.

In looking back on the conversation I was having with Dear Friend, I can see that, despite the tug-of-war I felt going on between my practical, sensible self and my F-it, independent self, F-it had already taken the prize and was sitting quietly in the corner waiting for me to notice. People living with cancer have to make all kinds of difficult decisions based on piles of uncertainties during their cancer fight. So, in response to the one I face: I am going to the UK to ride a Harley-Davidson 1,000 miles. I am going to do it with my eyes open and with full understanding of my health situation. Should I become symptomatic, I will get myself home immediately. I will not drop the bike on myself.

I'll post when I can.

Cheers!

Platelet Watch Summer 2007 (Update No. 6)

2007-08-17T12:33:00.000-04:00

Cautious Optimism wagged her little tail when she heard the news. 85 platelets. In a vigorous effort to pursuade her oncologist to commit to allowing her to go to the UK, Tracy scrambled furiously over sensible Cautious Optimism. She succeeded only in getting his charming smile, something that sounded a hell of a lot like a patronizing OK to go ahead and pack if she must, and a clear dose of But-I'm-Not-Making-Any-Decisions-Until-Monday. Tracy retreated, saving her resources for the next encounter. She scratched Cautious Optimism's ears in apology for the trouncing and thanked her for staying with her for so long.

Platelet Watch Summer 2007 (Update No. 5)

2007-08-15T13:19:00.000-04:00

And that's all I have to say about that.

Platelet Watch Summer 2007 (Update No. 4)

2007-08-14T13:02:00.000-04:00

My friend Joy has said, "Hope is a powerful thing." I've held that observation closely since I first heard her express it, and absorbed it into my being in the days and years since. Those five words can instill calm and optimism in me whenever I think of them.

Monday morning's platelet count was 17. I felt Cautious Optimism perk its little head up when I got those results back at the oncologist's office. Dear God, am I actually on the right track now? After IV Ig treatment, I was off to the blood center for another platelet infusion. I bumped to 62. I am hoping that tomorrow, taking into account the time the correct dosage of prednisone has had to work and the added support of IV Ig, I am around 40. Following on this upward track, by Friday I am hoping to have a conversation with my oncologist about a plan for me to go to the UK for the ride.

As if I weren't all nutted out about this already, I received an e-mail from the team at Amazon Heart that outlined the bike allocations. I am slated to ride this.

Hope is a powerful thing.

A Shout Out to My Love

2007-08-12T15:08:00.000-04:00

August 8th is the day I married my best friend of ten years. He is a fantastic man. He is devoted to his family, a super dad, a self-made business man, a talented artist who can create custom engine parts out of shapeless pieces of metal, has an amazing eye for photography, cooks and does his own laundry, is super-handy around the house and has shoulders of steel.

I know this because, thanks to my disease, he's been holding me up for seven of our 12 blissful years of marriage. Don't dismiss this fact as an unmeritorious obligation of marriage. I know many a marriage that has not withstood the test of breast cancer.

Of course I have friends and family who are always willing to do what I need them to do, or be where I need them to be. But My Love just is. All the time. Every day. Every night. Because of him, I have what I desire most: a loving family of our own creation that is my deepest joy.

So, in keeping with this summer's theme of utter chaos, it is completely without shame that I admit to you all that I forgot our anniversary. Entirely. But, before you crucify me, know that My Love also forgot. Oh, yeah. And, had it not been for a phone call from his mother offering good wishes on this important day, God knows when either one of us would have remembered.

Happy 12th Anniversary, My Love. I'm looking forward to so many more. If I can remember them.

I Hope to Stumble Often

2007-08-12T14:51:00.000-04:00

I found this interview with Daniel Gilbert, a Harvard psychologist whose book Stumbling Onto Happiness was recently released in paperback, in the May issue of Smithsonian. No, this publication is not on my must-have subscription list. I was sitting at the transfusion center WAITING FOR PLATELETS and picked it up for lack of something better to read.

Anyway. The gist of it is (and here I paraphrase from some legitimate reviews) that when people try to imagine what the future will hold, they make some basic and consistent mistakes. Just as memory plays tricks on us when we try to look backward in time, so does imagination play tricks when we try to look forward. The fact is, happiness is not really what or where we think it is. The book describes what science has to tell us about the uniquely human endeavor to envision the future, and how likely we are to enjoy it when we get there.

So, get out there and start stumbling.

More? Thanks, But No. My Plate Is Quite Full Already.

2007-08-12T13:28:00.000-04:00

Holy crap! What the hell happened to my life?! The past couple of weeks are a blur of relentless insanity. I could document the drama for you in excruciating detail, but I ain't gonna do it. I don't think I could remember it all and I would most certainly like to leave any issues my brain has chosen to forget, forgotten. No use looking for trouble (I never say). But, even just giving you the high points is going to take some time. Get a glass of Cabernet before you settle in for this one. It's a bit long.

The Daily Show
This summer, most weekday mornings start with me stopping at the hospital for a CBC to see just how low my platelets are despite transfusion. I have The Kid in tow because after I get stuck and develop a new bruise (I look like a heroine addict at this point), I bring The Kid to day camp. After dropping said Kid at day camp, I hop in the car to drive to work and invariably receive a call from my oncologist saying I need to come in and get platelets. For those of you counting, and I truly don't know why you would be because I am most certainly not, my estimate is at least 15 transfusions in the past six week.

I then go into the office, plow through my e-mails and try to figure out just how out of touch and behind schedule I am. I'll get what I can done until about noon, when I drive up to Westchester for the platelets. Fully infused, I turn around and drive an hour-and-a-half (barring traffic and accidents) back to my office, arriving about 4:00 p.m., where I put in a few more hours and get home about 8:00 p.m. I crash, and start all over again the next day.

The Platelet Puzzle
After discovering that prednisone is apparently not doing a damn thing, my oncologist starts weaning me off and moves on to Plan B, the aforementioned IV Ig. After my insurance company drags its heels, and Ellen, the pit bull of patient advocacy in my oncologist's office has her way with the dimwits at the insurance company, I receive an enormous cooler of IV Ig within a few days. I started treatment last Tuesday, the 7th.

I returned to my oncologist's office on Thursday the 9th. Wait, let me stop here. Because, I don't know if you've been wondering how much I'm blowing on gas for all my NJ/NY gallivanting, but I sure have been. So, I tallied up. Fuel expenditures from July 7 through August 7 comes to $425.05. Yeah. Soak that one in. And, no, I do not drive an SUV or otherwise gas-guzzling monstrosity.

OK, back to Thursday at the oncologist's office. I spend the drive up trying on different scenarios of what the outcome of my first treatment could be. Maybe I've taken a major spike up. That would be the ultimate. Or, I could see a small, but definite increase that signifies things are turning around. That works for me, too. Or, I'm stable. That would suck. But, again, could signify that things are turning around, only more slowly than I'd like. Let's not forget -- I am trying to get to the UK on the 21st. The thought of my count completely tanking eludes me completely. Too bad, that, because that's precisely what it did. One platelet. One.

At this point, I believe I've found the end of the rope. The UK is quickly slipping through my fingers and I am finally starting to acknowledge the fact. Devastated. That's pretty much the word for it. I am infused with IV Ig and sent off for more platelets. I leave with 23. Not great, but whatever. At this point, I am too weary over this to care. I also leave with the knowledge that I will likely be back again the next day because, if the pattern developed over the last month is any indication, my platelets will have dropped overnight and my oncologist will not let me through the weekend without at least a passing level of platelets.

Sure enough, I've got 8 on Friday. Refer back to The Daily Show heading for how the day goes. At least, up until the part where I get to the office.

This is when I learn my oncologist has called what my nurse practitioner calls a "Platelet Guru" for some guidance. For the record, I am not calling him a Platelet Guru until some demonstrable guru-like results pour forth from him.

Anyway, Guru Dude wants me back on the prednisone. 60 mg a day to be precise. Which, as we all may or may not recall, is where I started this whole merry-go-round. So, (And this is where it gets really, really good. So pay attention.) being the intelligent and responsible patient that I am, I pull out my ever-present bottle of prednisone and look at the directions to make sure I am dosing correctly. Because we all know how important proper dosing is. Instructions are "Take two tablets once a day." Got that part? Good. Now, for some godunknown reason, I decide to check out what size tablets I have been prescribed. (I don't know about you, but I'm guessing 30 mg.) After several seconds of searching the label for the dose, I finally see it: 5 mg. What the F!

I am on the phone to my nurse practitioner in an instant. As you can imagine, I am also beyond livid. I have not been at a therapeutic dose since this utterly ridiculous and, let's not forget, life-threatening situation started over a month ago. The way I see it, I may as well have been taking Pez. This realization shoots my thoughts in multiple directions -- Who the hell do I kill? I may not see the UK and it's because someone made a mistake? I've been in a precarious and dangerous health situation and pretty much not receiving treatment for it for a month? Will this discovery finally make the difference and get me to the UK?

God. I don't know. I just don't know.

What I do know, is that I couldn't have made it through Friday had it not been for Dear Friend, who blew one of her two summer half-days to drive my sorry self, in the rain, up to Westchester for platelets. I just couldn't do it myself. My head was pounding from the strain of the past month and my newly acquired knowledge. I felt terrible taking help, as per usual. I'm trying to assuage myself by ascribing Dear Friend's selfless act to her not-so-hidden desire to give my car a test drive. Hey, I do what I have to do.

Platelet Watch Summer 2007 (Update No. 3)

2007-07-27T19:23:00.000-04:00

Platelets were down to 10 this morning. My nurse practitioner said she would have let me skate for the day if it wasn't Friday. But it is. So, no skating today. Just infusing. I hauled my sorry, clot-deficient self up to Westchester and left the medical center with 43 platelets circulating through my bruised body.

I was actually feeling pretty optimistic about getting back to the office early in the afternoon and cranking through some things that needed to get done. That optimism lasted about 15 minutes. 'Cause that's when I got to the aftermath of this. Good intentions averted.

I also got confirmation today that the previously mentioned Prosorba Column is indeed no longer available. I am to return to my oncologist's office on Monday to discuss IV Ig therapy. I don't feel like doing the research now. So, go ahead and do it yourself if you can't wait. Perhaps start here. Let me know what you find out.

Finally, this has had me and several colleagues with similarly sophomoric senses of humor cracking up this week. Yes, we are that highbrow.

Top This

2007-07-25T20:46:00.000-04:00

Pizza (I swear by all that is Italian and delicious, I made it myself!).
A bottle of Cabernet.
Harry Potter and the Deathly Hallows.
My patio.
Sunset.
Summer breeze.
...sigh

F Stage IV

2 Years

Some Pictures

In Memoriam

Tracy Pleva Hill

Update on Tracy

I'm Not Dead Yet

Update: Keeping it Brief

Journalist, 'My Cancer' Blogger Leroy Sievers Dies

Scan Day: Wednesday, 8.20

Update: Professional Cancer Patient Me

August 8, 1995

Cancer vs Medical Expenses: Which Will Kill You First?

A New Resource for Those Living with Advanced Cancer

Suggested Reading Material

The Spirited Woman

Aspiration! And, a Request.

The Week of Adverse Events. Alternative Title: Why Planning is Pointless

A Life to Celebrate

She's Back

If You're Going to Have Radiation, Then for Cripes Sake, Find a Way to Have a Good Time!

Vacation: Check; CyberKnife: Launch Stage Initiated

Genuinely Happy Me

I'm on NPR!

Business as Usual: Catching Up Here

Steroid-Fueled Round Up (Blog Bonus: Compelling Lead In)

Possible Mix-Up in Administrative Services, The Universe

YES, ALREADY!

Roses in My Path?

Triple Negative Breast Cancer in the News

Brave Decisions

GammaKnife: Take 3; Platelets...Take a Powder

Feelin' Groovy

How Am I Feeling? However Will Make You Happiest

Lots on My Mind. And Shoulders.

Head Adjustment Therapy: Special Session

Head Adjustment Therapy

... and a Partridge in a Pear Tree

I'm Waiting Here...

Scan Day Request

A Note from the Teacher

My Fiesty Friend Angie

Come on Now... Group Anxiety Attack

How's This for A Reality: I'm Lazy

Oh, Yes! Yes! Yes! Wait... No, No, No, NO!!!

Today...

Some Hope, Some Laughs

A Mutual Experience

Hello, WHAT?

New This Week

I Need a Note from My Doctor

Have I Reached a Limit?

Out of Sorts

A Moment of Zen Brought to You by My Love

Good Things

God Loves A Plan

Delicious Ambition: A Shameless Plug for Dear Friend and Friend

Super Tuesday Edition

Round Up: Because Too Many Things Are Racing Through My Mind

I Got a 100

Roosters: Massacred!

And You All Thought I Was Unstable

Scan Day!

Like Perrier Jouët, Indubitably

Road Rash

Today...

Today...

The Disease that Keeps on Taking

Suddenly, It All Makes Sense

The Gamma Knife Update

The Fully-Follicled Can Have Such Cold Hearts

I Need a Hat

'Tis the Season

Thursday, October 18th

This Weekend's Accomplishments

What Not to Ask

Healthcare Management: My Other Job

An Introduction

My Friend, St. Terese

How I Feel