Tracie Fights Back

Archive for July, 2010

I’ve been discharged! My checkup turned into four days in the hospital. I’ll fill you in when I get home.

Well, it’s hard to write here. But now I have access to a computer on Day 3 of my Stanford stay. It’s Thursday, and I’ve been basically bedridden for a week and a day. I’m getting stronger, but probably would feel better if I could actually start walking somewhere again. But first they must solve that pesky drop in blood pressure that occurs when I stand. At least they have ruled out all of the life-threatening reasons.

My first hospital stay has been interesting. First I spent 36 hours in an intermediate cardiology ward strapped to heart monitors. This was not a good place for a cancer patient on chemo. The smells were horrendous, and smells are magnified 1,000 times on chemo. Worse, it was was a co-ed ward, and the men of the unit had aim problems so I constantly complained about the bathroom. Until… a poor sick woman arrived in the bed next to me. I don’t want this to sound like I’m making fun or have no compassion, because I said many prayers for this elderly woman who had no control over her bowels. It started at 2 a.m. A horrible stench wafted my way. Kim and I began to gag. Then 3 a.m. Then 6:30. When my medical team arrived at 9 a.m., I begged them to get me out. They understood my sensitivity to smell in a way that the cardiac nurses did not. They promised a quick transfer back to the cancer floor.

It finally came at 4:30 p.m. on crap No. 7. By this time we had been given a box of surgical masks to wear during the crap attacks, with limited effectiveness.

When it came time to leave during the 7th attack, the gagging transport team had to work mightily to get my bed squeezed past the woman’s curtain-shrouded bed.

Alas, our attempt at allowing the woman a modicum of modesty would be temporary. My bed caught the curtain and began to open it as the hospital techs kept pushing, oblivious. I grabbed the curtain and tried to pull it closed, but by then end of the bed had caught the other curtain and dragged it open, too, like curtains opening on a stage.

Bryan was traumatized by what he saw that day.

Finally we were delivered to my peeps on the oncology ward and were lucky to score an empty room and the bed by a window overlooking a garden. Alas, our luck would not hold. A roommate was delivered, an older Russian woman that staff thought would understand better if they spoke to her more loudly.
Here were the first instructions:
“You’re not to get out of bed,” they yelled. “If you have to use the bathroom, call us. You’ll have to use this bedside commode.”

Oh, shit I thought. But it got worse.

“You’ll have your colonoscopy tomorrow morning so we’re going to give you some Golytely to help clean out your bowels tonight.”

Kim, Bryan and I collectively dropped our jaws. What kind of hell am I trapped in?????!!!

A couple of hours later Michelle arrived. She would have none of this and somehow managed to charm the nursing supervisor into moving me to an empty room. Thank God.

I know the universe must be trying to teach me something but I cannot for the life of me figure out what is the lesson of the mad crappers? So perhaps it’s a lesson for Bryan or Kim…

Any ideas?

Kim, me and Bryan during one of the crap attacks

Good news so far at Stanford. Brain scan showed no tumors. Bone scan showed no cancer. So whatever this is is unrelated to disease progression. Still more hospital tests to determine what it is. But so far extremely good news. !!!!

Well, the follow up today with Dr Carlson didn’t go as I had planned. He admitted me for 2-3 days for a battery of tests to determine why I’m so weak and dehydrated. I’m in the heart unit tonight sleeping with EKG probes stuck to me. Who knows what this all means?I’m a little scared. Kim is here sleeping in a chair and Michelle will drive over from Fresno tomorrow. Thank you all for prayers and well wishes!!! I can’t type any more on this phone.

Kim managed to get this as I was loaded up. She followed in the car while Michelle fretted.

After 9 hours in the ER, I returned home today feeling slightly stronger and in a lot less pain. I had been suffering horribly after five straight days on my new “trial” drug and finally gave out. I passed out in the kitchen trying to get something cold to drink (chemo burns up your insides; cold is good).

I even got up slowly, knowing sudden moves can make me light headed. About one minute in I lost consciousness. Luckily my friend Kim heard me get up and was quickly at my side.

We called Stanford and they advised us my condition was “serious” and that I should go the ER. Michelle called the ambulance, setting off the neighborhood phone tree.

I got great care at St. Agnes, and a private room in the ER so that the others in there sick would not expose me to anything else. I was diagnosed with another infection, which is a risk as chemo kills my white blood cells. They drew lots of blood, took a chest xray to see if something’s up with my heart, gave me morphine (relieving my excruciating pain for the first time in five days), and IV antibiotics after consulting with my oncologist at Stanford. Dehydration is becoming impossible to avoid. The ER doctor said that the vast number of cells dying from the chemo and absorbing moisture in my body makes it almost impossible to keep the body hydrated.

So tomorrow Kim (who came from Florida to help out) will schlep me to Stanford so that Dr. Carlson can try to figure out what’s going on.

I’m in the ER at St Agnes in Fresno. Trial drug beat me down. Unable to walk without assistance. Fainting. Tests and IV fluids. This is so hard.

Just when I hoped this couldn’t get any worse, this “trial” round of chemo is kicking my bones. One side effect of the Lapatinib pills is pain to the ever-depleting marrow. Another is soreness on the fingertips. I have it all. I can’t get comfortable. My body is wracked with excruciating pain. I’m weepy.

All I can do right now is dream of abandoning it all and running away to a vitamin treatment clinic in Tijuana.

Take care of your health!!!

I like my horoscope today in the San Francisco Chronicle. They can’t print things in the paper if they’re not true, right????

“CANCER: A burden you accepted as your lot in life shows signs of lightening up. It could even dissipate over the next few months.”

I am going to accept this as true because it reinforces what I feel deep down inside. That I am on the right path, my treatment is attacking the breast cancer that resides inside, and my second phase of treatment, which ends in late September, will finish up what the first phase started.

Already I’m liking the switch to Taxatere. My first phase of double dose chemos left me feeling heavy and lethargic, then sick. Today, my first on Taxatere, I awoke feeling normal, downed five Lapatinib pills worth $2,500 and walked three miles. Unheard of so far this soon after chemo. On A/C it took a week of recovery to shuffle to the end of my cul-de-sac.

Part of feeling energetic is that I am on a three-day regimen of steroids to help avoid an allergic reaction to the new chemo. They make me feel so good I asked if I could take them every day. Uh, no way, the med team said. They eventually would disrupt my adrenal system. I wasn’t serious anyway. At least not too serious.

So why did I get cancer and you have not? I learned yesterday that I have a faulty immune system. Somehow it got tweaked and became unable to recognize and attack defective cells in my body. It’s weird because I rarely get sick, so my immune system can respond to flu or cold issues and suppress those. But the defective cells that turn to cancer, which your immune system attacks and kills, escape mine. There is a vaccine in the works, my research nurse Mary explained to me, that tries to trick the system into recognizing cancer cells again by baiting them with small pox. This might be something that can help me some day.

Until then: no stress, no stress, no stress. And in my life that is a challenge as formidable as enduring chemo.

Meanwhile, my burden is lightening up and could even dissipate over the next few months!!!!

OK, first the good news. The tests results revealed what Dr. Carlson’s palpitations had detected: the tumors are much smaller. Much smaller.

Blah blah blah “markedly decreased in size compared to prior” mammogram says one report. “Significant measured size decrease in” two dimensions in what had been the largest tumor in my breast, according to the MRI report. It’s still long, but it’s flat, like a deflated balloon. The report also seemed to indicate it had lost a lot of its vigor, and when it was first imaged it was a very aggressive cancer-making machine.

This is extremely good news. Not every tumor shrinks with chemo, oddly enough, and some even grow. What this indicates, says Katie Pose the PA, is that the two types of chemo I had been on are most likely tracking down any other cells that might have escaped to elsewhere in my body.

The other good news is that the MRI also stated “image of the breast reveal no abnormally enlarged lymph nodes,” so maybe maybe maybe the cancer was contained in the sentinel lymph on the right side of my breast. Who knows?

My heart function also was strong, the echocardiogram revealed. There is a slight chance of heart damage on these drugs, so that was good news.

So that’s what I know for now. We talked about many things today, including how I can help to prevent a recurrence. I have to make lifestyle changes, have a healthy living environment and, most importantly, find a way to significantly reduce stress and how I react to it. That’s a biggie, and most important. My type of cancer is stress aggravated. People who know me know I have lived a high-stress life the past dozen or so years. Learning to live in the present has I face this challenge has helped. I have to keep it up.

I started Taxatere today and it went pretty smoothly. I was closely watched for allergic reactions as I switched to a new chemo while still holding on to significant amounts of the last two in my system. So far, so good. Tomorrow I start the Lapatinib pills that allow the chemo to enter my brain. I take 5 pills every morning on an empty stomach (they cost roughly $500 each, but this is a trial drug supplied by GlaxoSmithKlein). These come with another set of potential side effects, including bone pain, for which I have to be alert.

But I’m supposed to be less nauseous. And already I don’t have that “just been hit by a truck” feeling I would come home with on the other two chemos. I will be tired, but I can deal with tired. I’ll let you know.

They put me in a hospital bed in case complications arose.

A shout out to Carol, who gave up a day to schlep me over to Stanford, a 12-hour ordeal. We left the house at 6 a.m. and pulled into the driveway at 6:10 p.m. My buddy Kim, who missed her flight from Florida in Vegas last night (and spent the night playing Texas Hold ‘Em at the Bellagio), was here, already making us laugh. My mom says she’ll spend her last few days here training Kim to take over her household duties.

So all in all, today was a great day filled with good news. I’m hopeful as I begin the final 12 weeks of chemo, and I’m happy that my infusions will be once every 3 weeks instead of every 2.

BC (before chemo, before cancer) it took a lot more than that to make me happy.

I’m up early today for the trip to Stanford. I just took steroids, which are now a part of my big bag o’ medicines. They’re supposed to stem any allergic reaction to the chemo, plus it will cause bloating and, if I’m like Barry Bonds, make my bald head even bigger. Time to get back into the gym.
I’ll get my official tests results, too, and will let you know what my status is when return home this evening.
Nothing is easy. Michelle needed a day off from all of this to actually work. Kim missed her connection to Fresno in Vegas, where the kind folks at the Tropicana upgraded her last-minute room and gave her four free drink tickets after hearing her tale of woe (kindness of strangers!). Still, she’ up in time for a later flight this morning. So it’s me and Carol for what I hope will be a shorter process with just one type of chemo to administer.
My date with chemo awaits. Later, friends!