mixed. but good. i think. (by Laurie)

March 10, 2011

And I’m not talking about the weather, which while it has been mixed, has been pretty consistently bad for the last twenty four hours. We had a big dump of snow (the photo above was taken from my front door), followed by freezing rain, which will be followed by ordinary rain.
Good thing I just bought rain boots.

My GP called me last week to let me know the results of my endoscopy (I won’t get in to see the gastroenterologist until March 21st). All my results were negative – no celiac, no bacterial infection, no cancer. It’s all good.

Then I talked to my oncologist on Friday. We discussed my scope results and my digestive symptoms (diarrhea, heartburn, abdominal pain). He expressed surprised that I was still feeling lousy on Friday after a Tuesday treatment. I told him that my recovery time had gone from four to six days and that last round, I’d felt sick for a week (this ended up being the case this time, too).

Then my oncologist said, “It’s time to take a break.”

I was floored.

I had been hoping to hear these words for months (years even) but when I finally did, I definitely had a mixed reaction. I’m being taken off the chemotherapy not because I’ve been in remission for a while (although I have) but because the chemo has started to take too big a toll on my body.

As Dr. G. said, “You can’t stay on vinorelbine forever.”
I’m going to continue with the Herceptin but take a break from the chemo for at least three months. Herceptin is also known to induce flu-like symptoms but I don’t think it has the lasting toxicity of chemotherapy drugs. I’m likely to bounce back more quickly after treatments.

So we’ll see what happens. There are no guarantees of anything and no promises. Every change involves risk.

But the next few months will be devoted to healing.


Cross-posted from Not Just About Cancer.


We Make Our Own Parades

July 3, 2009

When I embarked on this cancer journey a year and 7 months ago, I wrote about the terror of standing on a cliff, looking down and not being able to see what was at the bottom of the canyon.  I knew I had to get down but I wasn’t quite sure how I would do it or what obstacles I would encounter along the way.  Like any experienced hiker knows, the only way down is to start walking, so that’s what I did, taking each obstacle as it came into view on my path –surgery, chemo, heart problems, my children’s reactions, exhaustion, doctors appointments and more surgery– never looking too far forward, always concentrating on the issue at hand. One foot in front of the other, each step getting me slightly closer to the end.

Well, I am happy to report that as of this week, I have finally reach the bottom of the gorge. Two days ago my oncologist walked into her office where I sat waiting for my chemo treatment and announced, “Bet you never thought you’d see this day !”

I was completely caught off guard. “Huh? What? That’s it?  Are you sure?”

Dr. Anderson left the office to double check that her numbers were correct and came back to confirm that yes indeed this would be my very last chemo treatment. All right then.  Bring it on.

As I sat in the leather lounge chair receiving what would be my last drops of Herceptin through my port, I was filled with a mix of emotions — a combination of relief and let down.  I had had no time to prepare for this momentous occasion.  I was robbed of the 3 weeks of anticipatory excitement-building that often is the best part of any occasion.  The Senior Prom is OK, but the lead up is what is really great–buying the dress, getting a tan. Vacations? Having them to look forward to is the key. Looking forward to something is always way better than the actual event.  To make matters worse, my favorite oncology nurse, Heidi, who had been with me since the beginning, was on vacation, so a virtual stranger hooked me up to my last infusion.  She was nice — but she didn’t know me like Heidi knew me. 

So when the IV line beeped, signifying my bag of medicine was empty,and my port was de-accessed, I headed for the elevator, said goodbye like any other day and walked through the garage to my car. I left that building that I had visited every 3 weeks– sometimes more often than that even– for the last year and a half. I left that building, the halls of which almost 2 years ago signified a beacon of hope in an otherwise bleak forecast to my future — I left, looking for  a parade in my honor.  Of course, there was no parade; just the garage attendant who took my money and stamped my ticket like he had every other day.  I drove home.

The next day, amid a deluge of rain, I drove back to the Hospital District.  This time I was headed over to the Brigham for another milestone in this crazy cancer hike — the final mile. I was scheduled for my first mammogram since being diagnosed with Stage 2 Her 2 neu/er/pr positive Breast Cancer. The rain served a perfect distraction for my drive down route 93.  I needed to concentrate so as not to hydroplane –being nervous about my mammogram was not an option.

The great thing about having had a mastectomy is that a mamogram takes half as long.  They only need to squash one side into a virtual breast pancake and x-ray the insides.  The other side — my silicone fake breast is spared the embarrassment and pain.  Not that the cancer can’t form around the implant, it’s just that the machine cannot detect it.  That’s where Dr. Christian comes in.

It was wonderful to see my surgeon, Dr. Christian again.  He  bounded into the exam room with my mammogram results in hand, ” Terrific news,” he said, his Johnny-Carson eyes twinkling. Dr. Christian uses words like ‘terrific’ and ‘swell’ all the time without it sounding goofy and he makes me want to use those words too. 

“You look terrific,” he said.

“I feel terrific,” I say, letting the word roll off my tongue like Tony the Tiger.

It was all good news.  After he examined me, he gave me a clean bill of health for a whole year and sent me on my way.  Again, I looked for the parade as I walked to the garage attendant, paid my bill and headed for my car.  It was when I sat in the driver’s seat that it hit me — this journey is over.  Seriously over.  And the tears came as hard as the rain outside.  The tears came in waves that wouldn’t stop. They were tears of overwhelming relief that I had come through this very scary thing —  I had survived, I had kicked it’s ass. I realized sitting in my car that I had barely cried throughout this battle.  Only a little when I was first diagnosed but hardly at all.  I was too busy concentrating on each step of the journey to let myself feel what was happening.  I was too afraid that if I had fallen apart at any time during my treatment that I would not be strong enough to see it through to the end.  I needed all my strength to fight.  But there, in my car, with it all behind me, I could cry.  And cry I did.

When I got home I called some friends to go out for drinks.  I brought them to the bar I now work at.  The place where I was still not sure if anyone liked me. We ordered martinis and everyone who worked there came over and congratulated me.  The bartender Jim said, “Hey Fran, is this your parade?” as I sat at the bar with my girlfriends.

“Yup, it is, ” I said, “No sense waiting for someone to throw a parade in your honor, might as well make your own.”

And so I did.


Taxotere (and Herceptin) — The Next Chapter

April 30, 2009

(cross posted from Coffee and Chemo. You can read the backstory here.)

 

I thought it would be simple.

I was wrong. Again.

But I am jumping ahead….

****WARNING: LONG POST****
(feel free to just skip straight to Part II)

——————————————————–

PART I — Herceptin

Because new drugs are usually given a bit slower than normal, the nurses were anxious about finishing the Herceptin early so that I could start the Taxoter as soon as possible. Now, having been around the chemo block one or two times already, I already figured this out on my own. So when D came in and suggested we up the rate of my IV drip to 130 (instead of 120), I immediately agreed.

A few minutes later, my oncologist came into the day room… to talk to me.

“What’s wrong?” I asked, since he does not usually pop in to chat.

With a very serious face, he told me how important it was to finish the Herceptin on time, otherwise I would have to come in another day for the Taxotere. He knows how much I dread coming in another day. Then he suggested that I follow D’s recommendations for how fast to administer the Herceptin.

Since I was doing that already, I saw no reason to argue.

After he left, I realized I neglected to mention that I already felt some mild chest pain, which is the reason I get Herceptin slowly in the first place.

I was a little nervous, but I figured I would mention the discomfort to D if/when she came in to up the rate. Since the Herceptin was almost finished, I suspected this might not even be an issue. I have already learned not to make a fuss out of something that might not even happen.

And, in fact, neither D nor anyone else suggested raising the rate in the few minutes that were left before the Herceptin finished, sometime between 12:30 and 1:00.

THAT was the easy part of the morning.

——————————————————–

PART II — Taxotere

I already knew that I would need to wear special “freezer” gloves and slippers during the Taxotere treatments, to prevent my fingernails and toenails from turning blue.

I was not prepared for how FREAKING COLD they would be!!! (…trying to keep my blog family friendly here….)

At first, the tip of one of my left fingers started tingling. I wondered if it was from:
1. neuropathy
2. Taxotere
3. the FREAKING cold gloves

Then the fingers on my right hand started burning.

I ruled out neuropathy, but I still was not sure which caused the burning sensation, the Taxotere or frostbite.

Finally, it was so painful, I called a nurse. The FREAKING gloves were FREEZING my fingers!

The nurse offered this simple advice: when my fingers get too cold, remove them from the gloves until they warm up.

She added another suggestion: only stick my fingertips in the gloves; keep the rest of my hands and fingers outside.

I asked if it was absolutely necessary to keep my fingers in the gloves. The nurse said that I had a choice: cold fingers or blue nails.

Now, I have never been particular about the way I look. I do not use make-up, I wear simple and comfortable clothes, and even now I walk around my house with my thinning hair out in the open. But to openly choose to have ugly blue fingernails was too much. I took a deep breath, held back my tears, and accepted that I would just have to learn to accept the freezer gloves.

It took TEN MINUTES to warm up my fingers enough to stick them back in the gloves!

My trials and tribulations were far from over.

A few minutes later, my chest started hurting. At least, I thought it did. I was not sure. I thought I felt pressure on my sternum. But maybe I was imagining it. Or maybe it was the same pressure I felt earlier from the Herceptin. I could not tell.

So, I waited.

A while later, I thought the pressure felt a little worse. But I still was not sure.

So, I waited.

Meanwhile, my chemo date valiantly tried to entertain me. Luckily, she is one of the most positive and good natured people I know, so she did a great job of distracting me.

Still, I felt the pressure getting stronger. And yet, maybe it was all in my head.

So, I waited some more.

Eventually, the pressure was downright uncomfortable.

However, I still was not sure whether the pressure was from:
1. the Herceptin
2. the Taxotere
3. my mind (perhaps stress related)

I did not want to make a fuss. (I know this is surprising for those who know me well, but I have long since discovered that I become rather weak-kneed when having to confront members of the medical community)

Finally, I could not take the pain!

I felt like an elephant was sitting on my sternum!

My wonderful chemo date told me I looked green. She kept reminding me to keep breathing. I had not even realized I was holding my breath (to try to alleviate the pain).

I called the nurse, who stopped the IV and went to consult my oncologist.

For the second time that day, my oncologist came to see me in the day ward. He asked me a few questions and turned around to go.

“Wait,” I called after him, “What’s the plan?” he responded, “I think I want to do an Echo and check your heart.”

“I am not sure;”

Not what I wanted to hear.

He decided on an EKG.

With time, the pain lessened. The EKG was normal. The oncologist determined I was good to go.

Chemo resumed.

So did the pressure in my chest.

This time I did not wait before telling the nurse. She slowed down the drip. I felt mild relief.

Periodically, different nurses came in to check on me. I answered them all the same: the pressure is unpleasant, but I can manage.

Meanwhile, I switched the freezer gloves and slippers at least twice, carefully making sure that I did not freeze my fingers off.

I cannot begin to tell you how relieved I was when the Taxotere finally finished.

This was NOT a fun chemo day.

Next time, I will know a bit more about what to expect. That should make it easier, even if I have the same symptoms (I sure hope I won’t).

I still feel pressure in my chest, but not so bad.

I have slight itching, but nothing too severe.

I am exhausted!

This stuff better work!!


what if?

March 10, 2009

“We have all the tools to eliminate mortality from Her2 positive breast cancers in the next 10 years.”

Dr. Eric Winer, Director, Breast Oncology Centre, Dana-Farber Cancer Institute (February 28, 2009, 9th Annual Conference For Young Women Affected By Breast Cancer).

Her2 is a protein. And it fuels cancer cells. Her2+ breast cancers are always very aggressive and, had I been diagnosed before Herceptin was widely available, I am sure that I would not be alive today. Now, a whole host of new drugs are being developed to attack this breast cancer that affects primarily younger women.

Dr. Winer’s words are among the most hopeful that I have heard in a long time.

And then today, I heard a story on the CBC about a man who is being forced to choose between taking an oral chemotherapy drug for his brain cancer or feeding his kids. It’s heart-breaking.

And, I can’t help but wonder, what if, when the Herceptin stops working, neither my government or my insurance company will pay for the next course of treatment? What happens then?

Dr. Winer also noted that 30-40% of all women with breast cancer metastases will eventually have the cancer spread to the brain. He told us that Herceptin doesn’t pass through the brain and suggested that all women with metastatic her2 positive breast cancers have brain scans done every 6 to 12 months. Guess what I am going to be talking to my oncologist about during my next appointment? (Although, vinorelbine, the chemo drug I’m taking is sometimes used to treat brain mets. That’s reassuring).

I hope this is making at least a little bit of sense. I have a raging head cold and am feeling pretty muddled. My spouse was laughing at me this evening, reminding me that I am always very stoic about the big things (like, say, having a liver the size of a watermelon) but a garden variety head cold turns me into a whimpering puddle of goo.

I guess I am reminded that, generally speaking, I am very healthy these days. And that, in itself, is very hopeful.

This brings me to my second favourite quote from the conference:

“The best predictor of doing well is doing well.”

-Dr. Winer.
Cross-posted from Not Just About Cancer.


A Step in the Right Direction

March 5, 2009

There was an article in The Boston Globe the other day about Mass General Hospital in Boston. It seems that MGH will be the first hospital in the country to do mandatory genetic testing on every cancerous tumor they encounter.  This is very cool.   What they have found is that many of the tumors have similar characteristics to others and by treating them more specifically then they can do away with unnecessary over-treatments.

This type of testing is already done on most breast cancers now which is why they have Herceptin that treats specifically the her2/neu type of tumor (the kind I have).  Herceptin will not work on non-her2 fed tumors.  Hopefully the testing of each tumor in all sorts of cancers; lung, colon, etc will call for the invention of other Herceptin-like drugs used as targeted therapy and save patients the agony and side effects of many Chemotherapy treatment drugs that are not working.

Ten years ago Herceptin was not around and many died from their her2/neu type breast cancer.  Now, with the help of the drug, many live long and happy lives.  It is exciting to think that steps are being made toward more of these targeted drugs.

I often hear people complain that they think it is big business for drug companies to NOT find a cure for cancer.  I don’t believe this. It just takes time and patience. Sometimes growth in any area of life comes in spurts. There are times it seems our own children will never grow up and then suddenly overnight, their shoes don’t fit and they need new jeans and they can talk in full senetences.  I feel that this new step in cancer research is like a growth-spurt.  Once we tap into the genetic make-up of these tumors, it will open up a whole new world of possibilities for treatment.

They say necessity is the mother of invention. Since personally I seem to know way too many people battling cancer right now, the necessity of MGH’s new plan seems obvious.

Read the full article here:

http://www.boston.com/news/local/massachusetts/articles/2009/03/03/mgh_to_use_genetics_to_personalize_cancer_care/


Cancer vs. The Common Cold

January 15, 2009

(cross posted from Coffee and Chemo (here and here))

It occurred to me that having a cold might affect my ability to receive chemo tomorrow.

I emailed my oncologist, who wrote back: “come and we will decide tomorrow–sounds like you will get a little break”

What does that mean?

Do I have the nurses open my port as usual?

I am scheduled to receive both Taxol and Herceptin. If “we” (and by “we,” I mean “he”) decide to postpone treatments, do we postpone both medications? By how long? A few days? A week? What is a “little break?” (To me, a “break” would be at least a month! We know that is not happening, as we have already established (here) that we can not postpone the Herceptin by more than a week)

Last week, my doctor told me that we would evaluate the efficacy of my treatments in the next two weeks. How does postponing treatment affect our ability to evaluate if the drugs are working?

All these questions, just because of a stupid cold, from which, we agreed last year (see here), cancer patients should be exempt!

It seems that when push comes to shove, the common cold trumps the cancer card!

——————————————————————————————————–

Apparently, a “little break” is one week.

I received Herceptin today, but no Taxol. My next Taxol treatment will be next Thursday.

I was a little nervous about skipping the treatment, but my oncologist was pretty insistent. When I pressed him about it, he offered to give it to me if I was willing to sign a waver, taking full responsibility for any possible complications. I politely declined, to which he responded “I thought that’s what you’d say.”

So, I will focus on kicking this cold, which is pretty much taking up all my energy and then some.

I felt a bit better this morning, but by the time I got home I was wiped. I went straight to bed and slept for three hours!


The Power of Appreciation

December 31, 2008
(cross posted from Coffee and Chemo)
Last week, I was due to receive all three of my treatments on Hanukah: Herceptin, Taxol (plus four premedications), and Zomera/Denosumab. Though I let everyone know that I did not want to come for chemo two days running during Hanukah, I knew that possibility existed.

When I found out that I also needed to do a full body X-ray (which is done every 25 weeks for the Zomera/Denosumab study and takes around 20-minutes) my hopes for one chemo day flickered, then waned.

But, it was Hanukah, after all.

My hope flickered again, then got stronger, as I noticed that everyone was doing their best to try and help me finish all my treatments in time.

In the end, I finished all of my treatments in one day!

When I got home and hugged my kids, I was overwhelmed by gratitude.

I wanted to do something to show my appreciation to the oncology staff.

I decided to make a “Certificate of Appreciation.” It was a bit challenging for me to make it in Hebrew, especially since I wanted the wording to be an accurate reflection of how I felt. But I did it.

Then, I left it at home this Tuesday, when I went in for my next treatment (just Taxol).

I thought I would at least say thank you to the staff, but I got caught up in the details of the day and did not remember until I was finished and on my way out. I realized that I could not leave without expressing my thanks.

By this point, I know that things don’t happen on their own in the chemo ward. There is so much that goes on “behind the scenes.” The nurses work especially hard to make sure that we receive our treatments and the care that we need.

So I went back, and found the four nurses who helped me so much the week before. One by one, I told each nurse how much I appreciated the efforts that she made to ensure that I finished in one day.

Two of the nurses were clearly moved, much more than I expected. Their reaction made me realize how powerful appreciation can be.

I have been in chemotherapy for almost a year and a half now. Most of these nurses have been my health care providers and support team for the entire time. I was not always appreciative of their efforts or their bedside manner.

In the beginning, I was confused by often contradictory behavior. I could not understand why the same nurse could be so kind one moment and so impatient the next.

Over time, I learned to recognize when the nurses were busy, rushed or pulled in a thousand different directions. I learned to ask questions during the quieter moments, like when the nurse is opening my port (and only the two of us are in the room), or at the end of the day, when most of the patients have already left, and the ward is calmer and quieter.

I also learned that the nurses know all about us. They do their homework, they talk to the doctors, and they make sure that we get what we need, even when they are understaffed, overworked, and underpaid.

And they are a tremendous source of knowledge and support.

Most days, I just take it for granted that they will do what they need to do. But, last Tuesday, I could not help but notice that every one of them was really trying to accommodate my needs. I felt like I had an entire support staff taking care of me.

One of the nurses, when I thanked her, looked at me blankly at first. “For what?” she asked. When I told her, she laughed and said, “That’s history; it’s already forgotten.” After all, they have done so much more since then.

“Well, I did not forget,” I answered back, laughing along with her, “For me, it was a big deal.”