Tracie Fights Back

Archive for September, 2010

First I need to vent about my power port, which regular readers know has been an ongoing problem. Now we know why. It’s waaaay out of place.

At Stanford yesterday I learned that the tube that delivers the chemo to my heart to be pumped to the rest of my body has for some reason has moved 4 centimeters short of its target. As I work out the metric conversion in my head, I’m imaging that being about a yard.

It might as well be for all of the good it can do me now. The official medical opinion is that it cannot be used anymore to deliver chemo (or Herceptin, which I have to do for the next year) in its current position. The scary part is that it HAS been used for who knows how long while in this position. Everyone knows it hasn’t worked right, and that the infusion nurses have not been able to draw blood from it for as long as it has been in there. They theorize now the tip might have pushed against the vein wall, blocking the tube when they tried to suck blood out.

There is a chance that since it was used to deliver chemo all of these weeks, the chemo could have burned the vein near my heart where it has been dumping out. There is no way of knowing for sure. Yay me. And another reason for all of you to avoid this disease at all costs.

Though this is interventional radiology’s problem, Dr. Mollick, aka Dr. Nice, had to deliver the bad news while I was at Stanford to meet with my mastectomy surgeon. (Which is OK because I LOVE to see him, even on days like these when he has bad news. Oh, and apparently he got grief for giving me a ride to my emergency echocardiogram on his Segway the other day. He was supposed to call for a golf cart, like that would have been fun or made for a good story.).

He had many questions for me about how it could have come out of place, the most amusing being “Have you been standing on your head?” I assured him that ‘sitting on my ass,’ is all I can muster.

Now the bad news. We have to fix the placement. They can give me chemo in an arm vein for the last go-round on Sept. 21, but if they delivered the Herceptin that way every three weeks for the next year, my arm would end up with track marks like some crazed heroin addict.

So, as if having cancer isn’t bad enough, as if the chemo nausea and mouth blisters and hair loss and finger pain and bone ache and weight loss and smell and sound hypersensitivity and memory loss and income loss and fear aren’t enough to have to deal with, now I must have another procedure to “fix” it.

It will be like an angiogram, but through a vein in my groin instead of an artery. Doctors will thread a wire through the vein to my heart, “lasso” the wire and try to pull it back into place.

He said I would be awake. No way! I said I would only do it if they sedated me with the Michael Jackson drug. They would seriously have to tie me to the gurney if I were awake and knew this was going on. Somebody needs to cut me a break for once in all of this! Dr. Mollick said he would write that on the order.

Also, Dr. Mollick, if you are reading this I have another demand/request/demand: I want someone who has done this hundreds and hundreds of times to do it. No more students trying to learn, which I appreciate is a part of your mission there at Stanford. But since this is the department that misled me during the original installation (read previous entry Good Stanford, Bad Stanford), they owe me. I hope all of you at Stanford will see why this is important to me. I need to be able to trust the interventional radiologists as much as I trust my team in the Cancer Center.

Which brings me to my meeting with my surgeon, Dr. Fred Durbas. Nice man. And an excellent surgeon, I am told.

He was very impressed with my progress and the way my tumors have reacted to chemotherapy. I cried tears of relief when he said that that means the chemo would be equally as effective on any cells that might have escaped elsewhere. While the tumors are hard to detect, he said, it doesn’t mean the cancer cells inside have shrunk to nothing. He compared it to spraying herbicides on a field of weeds. Most of them would die, but there could be plants that survive scattered across the field. That’s why the entire breast has to go.

The tentative plan is this: remove my right breast on October 20, along with all of the lymph nodes in my right arm. We know the cancer had spread to a lymph node near my right breast, and that is the likely path along which it would have continued. It means I could have problems with swelling in my arm forever more, but Amy his PA says that with advances in medicine she hasn’t seen that in 10 years.

Then in spring when I have my breast reconstruction, Dr. Durbas will remove my left breast to all-but eliminate the risk of another breast cancer recurrence (of course it does nothing to reduce the risk it can pop up elsewhere in my body). It will also eliminate some fear that I have.

We’re waiting because it means my skin on that side will be preserved for the reconstruction surgery, meaning that less will have to be grafted.

So that brings you up to date on my Stanford visit yesterday. My friend Carol gave up her day to drive me over there – and get me back in time for a meeting in Fresno sponsored by Genetech, the maker of Herceptin, which I learned is a biologic agent that trains the gene that makes my HER2pos cancer reproduce to knock it off. Apparently it takes a year to make it stop, but more on that another day.

Meanwhile, it’s noon and I’m still in bed. It’s 10 days past chemo and I’m still sick. Sick and tired. And sick and tired of being sick and tired. I still can’t eat solid food, but the blisters in my mouth and throat seem to be subsiding. My stomach, which keeps spasming, feels like sumo wrestlers are going at it inside.

I guess this is all normal. I have had seven mega rounds of chemo discharged inside of me, and a lot of it is still in there working since I’m told it takes six months to leave.

Unfortunately, I had higher expectations for Taxatere, which I had been assured had lesser side effects than the Adryomiacin and Cytoxin that were my chemos for the first half of this trial.

But as the most frustrating new saying in my life goes: Everyone reacts differently. For some reason for me it has been particularly tough.

I also learned this week that some oncologists have a nickname for Taxatere that makes my current condition easier to understand.

They call it Toxic-tere. And it’s inside me.

I’ll be meeting with my surgeon for the mastectomy scheduled for Oct 20. More when I return.
My mouth and throat are still killing me. Lost a couple of pounds. Sigh.

That’s a painful header, but I’ve got blisters in my mouth and throat that feel worse than the worst strep throat I ever have suffered. I’m loath to write about more pain, but that’s the cycle I’m in. I keep waiting for another adventure, or something funny to happen to me, but when chemo and drugs seemingly blister one’s esophagus and digestive tract it’s hard to find the humor in anything.

So here I sit with a sea salt gargle, unable to eat solid food.

With one chemo left to go, my will to repeat this two weeks from today is running short. Isn’t the cancer gone by now? Does one more really make that big of a difference? But you’ve only got one more, Tracie. Why would you not complete what you started, especially when you’ve come this far and endured so much? Buck up, Buckaroo.

It’s so hard.

Three months ago I could spin at the gym, power walk four miles without breaking a sweat and drink shots of tequila until 3 a.m. Now I sit on the edge of my bed in the mornings wondering if I even can get down the stairs to my spot on the sofa. On some days I just give up and sink back into my pillow.

This is what the verge of death feels like, I imagine, and it’s a scary place. I saw it in my dad, who passed from prostate cancer four years ago. I saw it in my mom, my inspiration, who has survived two rare types of heart attacks to swim and go to the gym again.

So I spend my dark hours making promises to myself: you will be fit again, you will practice moderation, you will stay positive, relaxed, and meditate on a healthy body healing itself forevermore. My friend Tony says I’m Steve Austin and will return – rebuilt and renewed — faster and stronger. I like that thought and pray it’s true. I’m going to add “smarter” and “more mindful” of what goes in and on my body.

There’s a story in the NY Times today about the conflicting studies performed on potential adverse health effects caused by disphenol-A, or BPA, the chemical used to create plastic bottles. It’s an endocrine disruptor that can act as hormones do and, some say, can cause breast and prostate cancers.

Sen. Dianne Feinstein wants it banned, but the chemical lobby is strong. The European Union has banned it as a precaution. Better safe than sorry is their attitude. But there’s a line in the story about the US approach that made the few hairs left on my arms stand on end: “The United States takes the opposite approach: chemicals are not banned unless there is proof of harm.”

We all know that “harm” can take a lifetime of to figure out through exhaustive tests and anecdotal evidence. Meanwhile we are this generation of guinea pigs of the companies who profit by making and unleashing unproven chemicals and other adulterated substances on our planet. (I repeat my plug here to avoid bovine growth hormones if you drink milk. They are linked to breast cancer, yet dairy farmers are allowed to use it to boost production. Read the carton labels to find rbgh-free.)

So today I’m in pain, angry and need a target so I’m going to blame corporate greed for my blistered esophagus. It’s not just meat and plastic. I found known carcinogens among the ingredients listed on an “organic” face cream sold at Macy’s.

My blistered esophagus and I are (so-far) living proof that the price we sometimes pay for beauty and convenience can end up being neither a thing of beauty nor convenient.

I wore my wig (for just the second time) to Michelle's bday dinner pretending to feel better than I did. I had to stop and rest on this bench on the way to the car. M's mom is in the middle.

PS:
I couldn’t take my trial drug pills today. I just couldn’t get he Lapatinib horse-sized tablets down my throat, which seems swollen. I missed them once during the last round too for essentially the same reason. But my goal is to take them tomorrow, or maybe tonight if the pain and swelling subsides.

I'm always scared when I look back and see how sick I was during the throes of chemo hell. I'm in bed Saturday holding the tube that leads to my pot vaporizer.

Whew. That was awful. I awoke this morning at 6:30 as if a fever had broken. It was the bone pain, at last subsided enough to be bearable.

As I try now to sit upright on the Monday following the infusion last Tuesday, I’m still pretty achy in my hips, neck and fingers. I imagine this is what debilitating arthritis feels like. It’s nothing like the excruciating pain I felt over the weekend as the Neulasta shot medicine infiltrated my bone marrow, enticing white blood cells to grow. Chemo, as you know by now, kills white blood cells. White blood cells keep me alive. So I guess it’s a good tradeoff.

I tried managing my pain this time knowing that the prescription Vicodin my doctors offered would constipate me and cause toxic chemo buildup in my system. It’s a tradeoff. The pain makes me whimper and cry. It’s pitiful, I’m pitiful, but I took the pills anyway. I still can’t think straight, so this post will likely ramble…

(And thank you all for your constipation remedies but one can’t swallow FILL IN THE BLANK when one is nauseous.)

Why can’t someone invent a pain reliever that works for chemo pain that doesn’t constipate? (Vicodin barely masks it, btw)

Medical marijuana you say? I wish.

To date it has been the biggest disappointment of this chemo hell. That’s probably an overstatement, but I am surprised (and frustrated) that it has not been more effective FOR ME.

I’m a fan of marijuana in all of its forms, having been a child of the 70s. I’ve always thought it is benign and that the law enforcement effort put into arresting and imprisoning users was a horrendous waste of money. Because of this attitude, I’ve always thought that if I ever had to undergo chemo, I’d have it made. I’d just smoke pot and the pain and nausea would disappear.

I wish. What I actually found FOR ME is that it never helped ease my extreme nausea, nor did it relieve pain. So the few times I’ve tried it I’ve just ended up being high with cancer, not a place my head really wants to be.

First I should say I never smoked it during my treatment. That would be counterintuitive to my cancer treatment. It can’t be healthy inhaling combustibles, yet smoking it is supposed to be the most effective way to combat nausea.

One person on my medical team said that all of the studies she has read relied on smoked marijuana to establish the anti-nausea benefit, but inhaling smoke did not seem like a good option for me with my compromised immune system.

So Michelle tried making crackers for me out of organic marijuana grown indoors with vegan fertilizers (using a recipe for savory crackers I had enjoyed at my company Christmas party! That makes the AP baker an unbeknownst-to-her co-conspirator)
CALIFORNIA LAW ENFORCEMENT ALERT: WE HAVE MEDICAL MARIJUANA CARDS.

However, here is nothing more nauseating than feeling like you’re going to toss your cookies, and eating a cracker that tastes like marijuana will do that even to people not on chemotherapy. It will turn you off to crackers forever. The crackers just did not work for me (hey friends: watch out for our cheese plates; we have leftovers. Just kidding. That would be illegal.)

Desperate, we ended up buying a cheap vaporizer on eBay that heats the pot on a filament, thereby releasing the THC as a vapor. It does not burn the green part, which ends up turning a little brown but essentially leaves the marijuana looking the same as when it went in.

Using this the “patient” is inhaling only THC vapor, but not getting the anti-nausea benefits of smoke. The cheap vaporizer is a temperamental device that works with mixed results, as in sometimes it heats properly and sometimes it does not. It means that sometimes I ended up too high, and sometimes nothing happens at all.

While I didn’t want to be “high” (because nothing screams ‘party down’ like breast cancer and chemotherapy), there were lesser benefits for me. When it worked it helped me to sleep, took the edge off a bit, and it helped stimulate my appetite, especially during the period a few weeks back when weight was dropping unhealthily from me and I landed in the hospital.

Those are excellent benefits, because at the end of the day I feel like I’m a walking, toxic time bomb filled with chemotherapy, radiation, dyes and pills. I worry that those foreign manmade substances are adversely impacting my body as much as I worry about the cancer.

So being able to feel a little better, for even just an hour, without adding to the stew of pharmaceuticals swimming in my system is an immeasurable psychological benefit to me.

Medical marijuana hasn’t given me the extreme benefits I was hoping for, but if cancer has taught me anything, it’s to find hope and meaning in the little things.

I hurt to the marrow thanks to the Neulasta shot that builds my white blood cells. That means I took yesterday off to veg out on Vicodin. I hate it, but it helped. More when I can manage. The pain sucks, but we are nearing the lasts and that was my last shot. Yay last!

Outside of oncology, I’ve had a mixed bag of experiences at Stanford, which in my mind I’ve considered gold standard of care in California.

First another recent good experience: My meeting with Dr. Gordon Lee, the plastic surgeon who will make me whole again at the end of all of this.

Perhaps that’s why I liked my meeting with him so much on Tuesday. After all of the poisoning, all of the talks of removal of body parts, here was a surgeon whose job is to build me back the way I was – and possibly better.

Because I’m having radiation after my mastectomy, I’m not a candidate for breast implants. Those spacers have to be installed at the time of the surgery, then pumped up slowly over time to stretch the skin back out. But my skin will be burned, and there’s a chance the spacers can interfere with the radiation, or, worse, deteriorate from it.

So my best reconstruction option is a Flap surgery, and I’m told Dr. Lee is the best and performs the most. The lengthy procedure will take skin, fat and veins from my belly and create new breasts from my own tissue.

The result will be breasts that look and feel real, albeit bisected by Frankenstein-like scars. The other down side is a six-week recovery period; but the bonus is a tummy tuck. Dr. Lee will take all of my fat, even if it’s more than what is needed for the smaller-size breasts I’ve requested (I’ve always hated wearing a bra!). I even heard the phrase “six-pack abs” during one of the discussions!

This whole plastic surgery idea is a mind-boggling foreign concept. I’ve been upset when loved ones got breast implants, angry that they were somehow made to feel badly about their body image. Same with botox and face lifts.

And yet, after months of talks with doctors about deadly cancer, potential long-term heart damage and disfigurement, along comes a doctor excited about putting me back together this spring. It was the first conversation about something that was going to happen to me that actually made me smile.

I couldn’t help but feel a little better about my future.

AND NOW THE BAD:

As regular readers of this blog know, I have always had problems with the power port installed under my chest skin. It’s the device nurses stick with a needle to deliver my chemo, which is too strong a substance to pass through an arm vein. The port has a tube that goes to my jugular vein and is “supposed” to lead to a vein into my heart. It’s temperamental and never, ever works as it’s supposed to. Blood draws are an exercise in tedium. It once took four hours and many vials of clot-busting blood thinners for it to give up blood for testing. Infusion nurses hate to see me coming. The draw has to work before it’s safe to start the infusion. The schedule falls way behind when I’m there.

Yes, I said it’s “supposed” to lead to a vein into my heart. But I’ll get to that in a minute because I’ve been angry about how the operation went down and have yet to write about it.

Two weeks after my diagnosis and a week before chemo was set to begin, I was still in shock. I spent two days at Stanford for baseline tests, then was scheduled for minor surgery to have the port installed in radiology.

As I lay on a gurney a very nice female doctor (an actual doctor, not a student intern), explained the procedure. I asked her if she would perform it and she agreed.

However, that is NOT what happened. I was wheeled to surgery by a couple of men in blue scrubs. In the operating room were about four other people, all men. I didn’t see the female doctor who had talked to me anywhere. They quickly hooked me to anesthesia (the Michael Jackson death drug propophil, I think). As I began to feel loopy a young man with a red beard sat in front of me, held my hand and said he would be performing the surgery.

“How many of these have you done?” I had the presence of mind to ask.

“None. But I stayed in a Holiday Inn Express last night,” he said.

I have to concede that that was funny, a takeoff on a commercial inferring intelligent decision-making. But it wasn’t to me at that moment in time, and before I could protest, they turned up the anesthesia and I was out. For a while.

I awakened during the procedure as they were wrenching the tube out an incision in my neck, negotiating a curve into the jugular.

“Hey, am I supposed to be awake?” I shouted.

A commotion ensured and I was out again.

I didn’t awaken again until recovery, when a nurse had to break this news:

“The doctor’s glove broke during surgery and you have to take antibiotics.”

Great, I thought. An infection heading into chemo, which I already knew would compromise my immune system by destroying my while blood cells.

I was pissed, but there was no one for me to tell what all had gone wrong.

It was a good two months before the pain subsided, and, as I’ve said ,it never worked right. Now we know why.

As the infusion nurses struggled with my port on Tuesday trying to draw blood, my oncologist Dr. Mollick came in for the second time, this time not offering a ride on the Segway. A routine X-ray revealed the problem: the tube that is supposed to lead to the heart vein stops short. Instead it stops in front of a secondary, feeder vein. He said that it is very likely that the flow of blood from that vein could catch the chemo and carry it to the vein where it is supposed to go, but he wasn’t sure. He needed radiology to read it, and he wants them to look on previous images to see if the port tube has shifted – or I if it always has stopped short.

It could explain why my heart always hurts when I get fluids and chemo. The drip has to be set on “slow” to avoid the tightness it causes in my chest.

What it meant for Tuesday was that my blood draws and chemo had to go through a vein in my arm – the very painful procedure that the damned painful operation for the port was supposed to avoid.

My options now are another port surgery – either to replace it or to replace the tube. Though I have only one more round of chemo, I have an entire year of the infused drug Herceptin, which is supposed to stop my kind of cancer from returning.

The port was supposed to be a friend to make my life a little easier. I’ve always had a sinking feeling that an intern seeking to gain experience at my expense ruined that for me.

I know it’s a teaching hospital, but I thought my request, made at the scariest time of my life, would be honored.

Despite my complaints, I’ve never been told why one person promised to perform my surgery but someone else did it. And I don’t think that’s fair, and it’s certainly not what I expected from Stanford.

It was a loooong day at Stanford Tuesday and, as always, not much went according to plan. So today I’m thankful for my new oncologist, Dr. Mollick, aka Dr. Nice, and now the new nickname I have for him — Superdoc, as you’ll see in a minute.

In anticipation of a late chemo and a long day of driving for Michelle, I attempted to reschedule my early morning echocardiogram for next week, when I have to drive three hours to Stanford to meet with the surgeon who will remove my breasts. Apparently that was a bad move.

As I’ve told you before, one minimal side effect of many of the treatments I’m getting in this clinical trial is a permanent loss of some heart function. To monitor this, I get periodic heart exams.

This I knew. What I didn’t know was that Tuesday, the day I was to launch on the second half of the second and final phase of my chemo treatment, was the deadline for the echocardiogram.

So after a great meeting with the plastic surgeon who will perform my reconstruction (more on that tomorrow), I walked across the hall to see Katie, my Super Cool PA and Dr. Mollick. The exam was great. I was feeling good and for the first time could report very few complications other than one day of excruciating pain (normal) and weakness (normal). Dr. Mollick, after performing my breast exam, even said this:

“If this were a blind test, I would guess you are the patient without breast cancer!”

He has a Super way of instilling confidence, which is why I sometimes refer to him as Dr. Nice.

Then in comes Mary Chen, the nurse in charge of the trial that’s designed to stop a recurrence of my recurring type of breast cancer (more news on the trial at the end of this, too.) Mary said that without the echocardiogram, I could not proceed with my treatment. That meant no chemo for me, and no Lapatinib pills to make it work better.

Boy was I pissed. My healthcare team was incredulous. I had received an echocardiogram when I was hospitalized that actually showed my heart strength increasing. Apparently that one was too many weeks past to satisfy FDA’s strict requirements (why are they so strict about this, but so lax on monitoring substances in food that CAUSE cancer? Read about bovine growth hormones, for one)

A panic set in as we wondered how to get an echocardiogram in less than an hour when I had been told the previous day that the earliest appointment was three weeks out. Mary left the room and came back saying they could squeeze me in at 8 a.m. Wednesday. That would mean a night in a $250 Palo Alto hotel, dogs unfed and Michelle out of work for another full day. Our hearts sank.

Then Super Dr. Mollick went to work. He sent me upstairs to the infusion room to move forward with the blood tests necessary to check my liver and red and while blood cells before I could receive the Taxatere.

Then he went to work on the phones.

There are many reasons my medical team at Stanford are my Superheroes, and one is that my oncologists, Dr. Carlson and Dr. Mollick, are also PhDs. It means they not only have gone to medical school, but have endured years of grad school as well. They treat patients, but also do research to find cancer cures and teach the next generations of cancer researchers and caregivers. Along the way many go into massive debt to help save our lives. I’m with Dr. Mollick now because Dr. Carlson traveled to Africa to help improve breast cancer prevention and treatment there. Super Cool.

As I sat in the infusion recliner, my heart was pounding. Could they get me in? Would Mary really withhold my treatment (she told me later that she would have to because missing a test could jeopardize the license of the oncologist in charge of the study).

After several long minutes the privacy curtain around my chair flung open. There stood Dr. Mollick, grinning. (mind you it’s 2 p.m. – the middle of his busy office hours) Let’s go, he said, echo will take you now but we have to get you there immediately and it’s a 10-to-12 minute walk to the hospital. Can you ride on the back of my Segway?

Did my ears hear right? “Seriously?” I asked.

I’ve never been on one of those stand-up personal transport devices. And I didn’t think they carried passengers! They move by balance. You lean forward to go forward, and lean back to stop or move backward. I’ve never seen one up close.

The nurse quickly unhooked me from the blood draw apparatus and off we dashed through the Cancer Center. Michelle and Bryan were waiting outside.

“Quick, get your camera phones out. I’m going to ride on a Segway.” Naturally, they thought it was Chemo Brain talking and ignored me (see last post).

Outside the backdoor of the Cancer Center, Dr. Mollick, dressed in his white lab coat, hopped on his awaiting Segway, and scooted his feet to the front to allow room for me to stand.

As I nervously put him in a bear hug from behind, off we zoomed as he lamented: “You know, we’re breaking at least three rules.”

“No helmets?” I guessed.

“That’s one,” he said. “And you’re not supposed to ride double. And doctors aren’t supposed to give patients rides.”

“So I can’t write about this on my blog?” I asked, sadly, because I was already anticipating telling everybody about the experience.

“Of course you can!” he said.

Dr. Mollick even ran me into the echo lab so that the nurses would put me at the front of the line!

Despite missing a good photo opp, Bryan had this observation as my Superhero doctor and I rode off into the glaring sun.

With his white lab coat fluttering in the breeze, whipped up by our blistering 12 mph speed, Bry had a vision about this struggling journalist and the doctor who goes out of his way to make the journey a little easier.

“You looked like Lois Lane being whisked away on the back of Superman,” Bryan said.

And that’s how Dr. Mollick became my Superhero, “Superdoc.”

Then-President George Bush falling off a Segway. Our ride was less eventful.

Until I find a better photo of Dr. Mollick, this one will do. Hahaha.

UPDATE ON MY TRIAL: Mary Chen, the Super efficient monitor of my clinical trial, told me yesterday that they had closed the trial with just 21 patients in it. In other words, no new patients are being admitted.

I am patient 21!

The reason: It is so successful they are getting ready to write up their results so that other research hospitals across the country can implement the trial and make it available to other women with HER2 positive breast cancer.

That’s Super Good News.