Archive for June, 2010
Visualizing a better day
Today I emerged from the chemical fog and return to life, albeit shakily. I managed to walk 1½ miles before sunrise (so I don’t get burned), and even ran a short errand for Michelle, who badly needs a break. Now I’m tired.
I’m not sure driving is a good idea, frankly. I feel a disconnect between my head and my body most of the time, so I’m going to sell my car. It would likely be sitting in the garage until the end of the year anyway, and those short-term disability payments aren’t much. So if anyone is interested in a 2008 Acura RDX with the technology package (the crossover that handles like a sports car) let me know.
This week my weird aches and pains include my teeth, which now are sensitive to even the ultra-soft baby toothbrush I’ve had to use for weeks, and my feet. I just can’t find socks soft enough. They feel blistered, though I look and there’s nothing visibly wrong. Skin cells dying, I guess.
My appetite is slowly returning after the worst round of chemo nausea so far, so tonight Michelle is making Mexican food (my favorite!!) for our Fresno boyfriends. Tacos (tofu for me) and homemade pinto beans that have been simmering all day. Yum, protein.
My mission today is to keep off the TV (if anyone needs advice on adding curb appeal to your yard, just ask) and do some research on guided visualizations. A couple of dear friends suggested that finding a way to control my mind would help with the depression and nausea. So I’m hopeful that in the throes of Round 4 I can take advantage of my perpetual mind-body chemo-induced disconnect and go to some far-away paradise – at least in my head. Otherwise, the thought of the next round petrifies me.
But today I feel pretty good by comparison, and I’m grateful for that. Tomorrow is another – and better — day.
Let’s fight the real threat to U.S. lives!
The U.S. will spend $60 billion fighting a war in Afghanistan this year.
It has spent more than $900 billion fighting in Iraq. In 2008 we spent $12 billion a month there.
In 2009 The National Cancer Institute asked the federal government for $6.1 billion to fund research for cures to the many cancers Americans suffer. The President cut the request to $4.1 billion, less than the previous year.
In other words, the amount of tax dollars we spend annually finding a cure for cancer is less than we pay for 1½ weeks of killing in Iraq.
This year 1.5 million U.S. citizens will be diagnosed with cancer. More than 1,500 will die of the disease each day.
Perhaps I’m too close to this, but shouldn’t we place more emphasis on finding the real killer?
My lifesavers
It’s Monday following chemo last Tuesday and I’m finally feeling like I can sit up a little bit, write and answer a few emails.
I think constantly about all of you who throw me lifelines when I’m down, and I pray when I read them that you know how much they mean to me. In my chemo nightmare I’ve fallen overboard and your notes of heartfelt encouragement are like flotation devices that get me through this difficult passage. When I want to stop, you tell me that my resilience has inspired you, so I dig a little deeper.
Nothing I’ve faced compares to this. But it seems now that every challenge was some sort of preparation.
I’m overwhelmed that you’re in this nightmare with me, or at least you’re not afraid to visit it. Some can’t.
This morning I got up before the sun and walked about 300 yards around the neighborhood. It already was 84 degrees outside. Walking was a huge challenge after being prone the past 4½ days, and I hoped it would get my heart pumping. The lethargy I feel is maddening, and gets worse every nauseating day I sit.
Rene the Vet did some acupressure on me Sunday trying to ease the harsh chemical nausea that has been wracking me. It seems to have helped. After walking today I was able to try a few yoga stretches to un-kink my haggard (and three more pounds lighter) body. I’ve been on the sofa ever since. Feeling this weak is depressing; seeing my stooped reflection is sobering. My aim (if Fresno’s heat wave breaks) is to get in a few road miles before next Tuesday’s fourth round. I have got to find a way to become stronger.
We have to get through two more rounds of these double doses of chemo, a feat that seems daunting to me now in the fog of this chemical hangover. Then I’ll switch to the chemo taxotere and the pills that open my brain membranes to its cell-killing action (this is the trial part designed to prevent a recurrence). The fun never stops.
The good news is that doctors promise taxotere is not as physically nauseating.
So I am over the first hump with good results to show for it.
Two more tough ones and these cycles might ease a bit on me, Michelle and you who are cheering us on!
Reality Bites
The sun is finally up, ending a long and sleepless night. I arose long before dawn, my back aching from too many hour spent prone. These are the hours when I feel so alone, angry and helpless.
While I try to be upbeat on my “good” days, the reality is that nearly half of my days are chemo-poisoned bad ones. Chemo is a depressant, and so is breast cancer, frankly. So in that darkest time before the dawn sometimes I can’t help but dwell on the battery of chemicals unleashed on cancer that also can cause permanent damage to my heart, lungs, bladder and liver. The price I’m paying for a chance at killing cancer is a risk of permanent disability. Reality bites.
Dr. Oz was on TV yesterday as I lay in bed clutching my knees fighting the waves of nausea gripping my body. The topic: breast self-exams. Not one person in his audience knew how to do it correctly, and very few performed the exams regularly. It’s like flossing, I suppose. We say we do it, but do we do it often enough, and do we do it right? The exam should last a total of 8 minutes on each breast for a thorough job, and it starts as high as the collarbone. The added degree of difficulty comes with fibrous breasts like mine where tumors are hard to detect. Whether there is a family history makes no difference. How could I not have known these things? I get angry with myself for being in this mess. And I tell you this because I don’t want it to happen to you.
Yes, this is a shitty ride, my friends. One in which I alternate between feeling the joy of living, then doubting on these bad days whether that it is enough to make this suffering worthwhile.
I try to keep my blog posts upbeat, but that is not always my reality. That sickly photo I posted from bed yesterday scares me, as it did some of you. I look and wonder what happened to the woman I used to see in the mirror. I miss her like you cannot believe!
That hairless, wan woman doesn’t seem like it should be invincible me.
But it is.
And it will be for a long haul.
Ugh!
This is a tough round. The gut-wrenching nausea started 24 hours earlier than usual. I fear I won’t be able to muster much communication, but your notes keep me going. Living on zofran and Fever Tree ginger ale, breathing deeply, trying not to lose it. This really sucks. But it’s working, right?!
Random Thoughts of Gratitude
First a shout out to Lisa W-R, my new private duty nurse here in Fresno. Kind, beautiful Lisa, a winemaker and nurse practitioner in the cardiology office Michelle visits, volunteered to give me my Neulasta shots the day after chemo. Until this week, we had to spend the night in a pricy Stanford hotel so I could get my shot at the cancer clinic 24 hours after chemo. That meant Michelle had to leave her insurance office for two days, too.
Shout-out, too, to Caremark for over-nighting shots that cost $25k apiece to the house. You wonder why medical costs are skyrocketing? That expensive shot helps replace the white blood cells chemo kills when it attacks my bone marrow. Without it, I would be deathly susceptible to colds, the flu and infections instead of just horribly susceptible.
As if chemo isn’t bad enough, the Neulasta shot goes in the abdomen. Who thinks of this stuff?
I look forward to Wednesday nights, when dear friends Rick and David have been coming to visit. Our get-togethers get me through the week when I am otherwise isolated at home with my doggies, blog, email and bad TV (Save me! I’m starting to like Khloe Kardashian). It’s a hard transitioning from the hustle of daily journalism to being a homebody, even if I sleep through a lot of it.
Last night Rick and David eased Michelle’s caretaking burden by showing up with tamales for dinner. It was my last night of real food before the queeze arrived this morning. Now I’m nibbling on spelt pretzels (an alkaline food) and sipping club soda.
A belated shout-out to my bro-in-law Jeff, who showed up at Stanford Tuesday to distract us from the chemo routine. And one to my normally cantankerous neighbor Ron who showed his soft side Monday by giving me the Chicken Soup breast cancer book!
I feel so much love, here in Fresno and across the miles. I’m overwhelmed and filled with gratitude for all of you who are on this journey with me. Your emails and comments and FB messages keep me uplifted and your encouragement gives me confidence. I constantly am amazed and grateful that you all are helping me get through this.
I could not have done so well so far without you!
Love, me
My “Remarkable” News
Today Round 3 of my double-dose of chemo starts to take hold, yet I’m facing my tiredness and the tightness gripping my stomach as the meds fight nausea with a sense of optimism rather than dread.
Yesterday I received the “remarkable” news, as my oncologist put it, that my tumors are shrinking at a record pace. If the things we can measure are shrinking, then Michelle and I hope that any rouge cells that might have escaped the tumors are dying excruciating deaths as well. (Medical professionals play those cards close to the vest.)
This cancer-fighting mission I’m on is a fulltime job. For those just tuning in, Michelle and I are attacking this on many levels. I see Lynn, my attitude-adjusting life coach who helps me with nutrition and detoxes; I go to yoga, my vet performs acupressure to help with the nausea, I sometimes nibble on marijuana crackers for the same reason, I walk briskly when I can, and sleep when that’s all I can do. I eat a mostly vegan alkaline-based diet (no breads, sugar, processed flours; lots of whole grains and greens) because there are theories that cancer can’t grow as fast, if at all. On this point I have doubters. The body is designed to autoregulate and balance ph – but why should I tax my body that way? I want my body to focus on cancer fighting, not correcting my dietary mistakes. For the same reason I wash with natural borax rather than detergents and soaps, and read labels incessantly. Do you know how many petroleum products are in lotions and foods (FD&C is a label clue. Yes the government allows corporations to use petroleum-based dyes in our FOOD. The UK forbids it). I am buoyed by the love and prayers from all of you.
I have the best oncologist in the country in Dr. Robert Carlson and his staff. And I get chemotherapy every other week in a cutting-edge clinical trial!
The chemo is saving my life. There are no studies I can find that give much credit to the complementary things I am doing. But how else can we explain the “remarkable” diagnosis that Michelle and I received this week. I believe that every single thing I do to help my body focus on healing itself is helping me in this fight.
So my advice to any of you who are going through this: Pull out all the stops. Find a great oncologist whom you trust. Eat healthy foods. Surround yourself with love and friends. Keep your attitude positive. Arm yourself with the most complete arsenal you can find.
Then have faith that all of your suffering will someday be rewarded with your own “remarkable.”
GOOD NEWS!!!
OMG, I just got the best news ever and wanted to share while I’m sitting in the chemo chair. My tumors are shrinking at a rapid pace.
In fact, when Dr. Robert Carlson was performing my breast exam his first words were “Where did it go?” He stopped to read the original description of my main breast tumor, then said it was much, much smaller than before. He couldn’t even find the second tumor in the sentinel lymph on the side of my breast.
He used the word “remarkable” and a bunch of others that I wished I had written down, but I was crying happy tears. So was Michelle.
The tumors are what we can measure. The fear is rouge cells that might have escaped and are hiding elsewhere in my body. But if the tumors are responding so remarkably to the treatment, then we all know the rouge cells are being gobbled up too.
So it’s a VERY good day. This kind of news makes me eager to endure Round 3.
The night before Round 3
I spent today trying hard not to think about tomorrow and my third round of double-dose chemo. Staying in the moment takes a lot of practice.
It will be my first trip to Stanford looking like the rest of the veterans in the infusion lab: bald.
Mostly I’m looking forward to seeing Dr. Carlson, who was at an oncology conference during my last visit. He will have a chance to examine my tumors, and we’ll see if he agrees with Katie the PA that they are smaller. I am hopeful.
I spend lots of time rubbing my head, intrigued by the smoothness of it. It won’t grow back until long after chemo has ended.
Chemo kills fast-growing cells, and cancer is a fast-growing cell. So is hair. So if my hair cells are dead, that means the cancer is dying too.
Bald is beautiful.
Mind Control
My dear old friends Judi and Sue came to visit this weekend so Michelle could go to a Bay Area family reunion. Health- and strength-wise I’m feeling good, as I’ve found I will on the alternate weekends before chemo. But emotionally I knew I would not want to spend the weekend alone, hence the “babysitters.”
They’re the kind of friends you can just hang out with and do nothing and feel comfortable with that. It’s a good thing since that’s a lot of what I do.
Our biggest excitement was riding the Vespas to Whole Foods to get snacks and things for dinner for our movie night. Sue’s partner Michael picked out the movies. Sue told him I like “smart comedies.” Michael got us “dark comedies.” So we quickly ejected “Gigantic,” when it turned violent, then suffered through “Serious Man” waiting for the laughs. It was a good Coen Brothers film, but not the kind of light fare we were hoping for. (Remember caretakers: everyone’s idea of “funny” is different.) Eventually we found the Michael Jackson farewell “This Is It” on Starzz, which was both fantastic and depressing at the same time.
It all got me way too much in my head, which is not the place I want to be even in the best of times. Though this is the weekend when I feel fine physically, I’m finding that keeping my thoughts and, therefore, my emotions in check can sometimes be tough. Well not sometimes, lots of times.
When my mind gets control I look down the road and see this odious schedule of foreign infusions for the next 1½ years, and even seven years hence when the word “remission” will come into play. It seems like an overwhelming long road to travel.
But when I’m in control of my mind, I ponder the moment: sitting on the patio with my friends, the dogs jumping in the pool, the birds chirping, a cool breeze blowing, my tomatoes ripening. And then I think: “life doesn’t get any better than this.”