Forgot to Tell You I'm Fine

Hey, I completely forgot to check in after my first chemo and tell you that I am fine! I didn't even realize it until a bunch of people started asking how I was doing.

Last summer, after chemo, there would be a week of radio silence because I was not fine, I was really messed up.  But this week, the radio silence was me just getting busy with life.

Maybe I have not been 100% perfectly fine. I had a few minor issues. I have been a bit tired in the afternoons, I seem to be sleeping later every morning, and my mouth is dry. But no nausea! Yahoo!

What a Long Day

It's not over, yet, but we're close.

I am unhooked but I have to sit here and continue to be observed for another 30 minutes.

The chemo was fine.

Originally Darlene was driving us home, but this took so much longer than expected... Darlene has to get her youngest to a concert tonight, so we couldn't ask her to hang out here with us indefinitely.

Lou found us another ride home. Gail is picking us up. Gail is an angel!

I am nauseated from them flushing my port multiple times. Not from the chemo. Funny!


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Busy Day Today

Lou and I are basically spending the entire day at Duke today.

John will deliver us to Duke by 10:00am. We go to clinic 1C for additional skin biopsies. They'll punch a bigger sample around the small hole they already made in my right arm, and then they'll sew it up nice and neat. Then they'll punch a small sample off my left arm, and I'll have to keep the hole lubricated and covered for the next week.

We head to clinic 1A for bloodwork at 10:30 -- I am POSITIVE we'll be late, because they'll need more than 30 minutes to do all that punching and sewing. Then we get to chat with Dr R. at 11:30ish.

Lunch... there is now a Subway next to the Chick-Fit-A in the cafeteria in the basement.

Then at 1:00, it is time for the liquid part of the new chemo. It's going to be injected (infused?) slowly, over an hour, to make sure I am cool with it. (In the future, it'll take only 30 minutes to inject.) Then we have to sit around for an hour (or maybe two?) to make sure I don't have a reaction.

Finally, we head to Starbucks in the hospital to hang around waiting for Darlene to get off work and come pick us up and bring us home.

I am not allowed to drive myself today, but I will be able to drive myself to future injections. I'll get an injection every other Thursday till it stops working and they kick me out of the clinical trial.

Lou just reminded me that we're leaving here at 9:00, so I had better wrap this up...

Please Stop Moving Your Arm

"Karen, please stop moving your right arm," ordered the nurse who had just set up a somewhat painful IV in my left hand

I hadn't moved my right arm, as far as I could tell. "Okay," I agreed anyway.

Then she started laughing and apologized. She had been trying to get a blood pressure reading, and it wasn't working, and so she had assumed that I was moving my right arm around. But the real problem was that she hadn't put the blood pressure cuff on me yet.

Apparently it does not work so good if it is not attached to the patient.

So far, the process of setting up for the tumor biopsy had been going fine.

Right at the beginning, there has been a bit of an unpleasant jolt when the junior doctor explained that they would be taking three samples during this tumor biopsy. I had thought that it would be one sample. In retrospect, I should have asked them to take like 40 samples and scoop it all out of me! But at the time, I was thinking that if it hurt, it was going to hurt three times, not just once.

I let myself daydream for a few seconds about turning to Lou and telling him that I changed my mind, get me out of here. But I really want to get started with the chemo, and I'll pretty much let them do whatever they want.

So I just signed the consent paperwork and climbed into the bed in the procedure room.

The ultrasound machine was on my right, and a nurse and the junior doctor used it to look at the tumor next to my pancreas and liver. That's the one they would use for the biopsies.

How many TV shows have I seen with ultrasound being performed on pregnant ladies, and they walk away with a picture of the baby? And then they show off that picture to everyone? I started laughing because I wondered if I was going to walk away with a picture of the tumor.

Everyone was pretty nice and relaxed, and I found myself laughing and joking. The nurses at Duke are just the best.

There was a second-year med student there, patting my left arm and chatting with me soothingly. When I asked if she would be participating in the procedure, she assured me that she would not be doing anything except observing.

At one point, I realized I was completely tense, like my entire body was clenched like a fist. So I made myself relax and sink into the bed. Eventually they would use the IV to give me drugs for relaxation and pain.

After a lot of setup, the senior doctor swept in like a king and started giving orders. They showed him the ultrasound and discussed the plan. Pretty quickly, they numbed the area and the senior doctor went for the first sample.

I am pretty squeamish, so I didn't look. (I don't ever look.)

But I felt pressure as they inserted the needle thing. At that moment, the blood pressure cuff started inflating, and that hurt a lot more than the needle thing! There was a loud SNAP and they got the first "core sample." They brought it over to a tray way on the other side of the room and someone verified that it was good.

Second sample was also quick. I felt pressure, a bit of discomfort.

Finally, it was time for the third sample. I was thinking, "It's almost over, it's been okay so far, it's almost over..." The junior doctor got to take the third sample. It took a bit longer and hurt a bit. But I guess everyone has to start somewhere.

Good thing they didn't need a fourth sample, because maybe they would have invited the med student or the janitor to have a go...

Then they were bandaging the area, whisking me off to recovery, where I got soda and crackers and my sweetie Lou. They watched me for two hours and then released me.

Really, the whole tumor biopsy process was as pleasant as they could have made it, which is good, because I have to do it all over again in a couple of weeks.

A million thanks to John for driving Lou and me!

I Wasn't Thinking

Weeks ago, I made a massage appointment today. I figured after everything that happened this week, I would need a massage to relax and rejuvenate. But I wasn't thinking about whether I'd be able to lie on my stomach.

For the tumor biopsy yesterday, they stuck a needle-like instrument three times into my lower chest area.

When the pain meds wore off, I was sore.

Last night, I could sleep on my back, and on my right side, totally comfortably. But I was uncomfortable sleeping on my left side. I was not brave enough to try sleeping on my stomach.

So, how I am supposed to go for a massage today?  I just wan't thinking.

Oooh, our big goal today is to go try out some mattresses.

Home Safe and Sound

I am home, safe and sound after having three core biopsies performed at Duke this morning.

It went really well. I'll make a detailed report maybe tomorrow.

Pain meds have not worn off yet.

Many thanks to John for driving us and for hanging out at the hospital for so long.

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Hole in My Arm

I have just a couple of minutes before we jump in the car with John and head to Duke for the tumor biopsy.

Just wanted to let you know that the skin biospsy was a breeze.

But twice a day, I have to replace the bandage and lubricant over what is essentially a red hole in my arm.  Yuck-o-rama.

No scab will form with the lubricant, which is what they want.  And in a week, they take a bigger biopsy in the same spot, to capture whatever heaaling occurred.

Long line at checkin desk

Just arrived at Duke clinic 1C for my first skin biopsy.

There are six people in line ahead of me.

I hope I get checked in fast so I am not late.  Does not look good.

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Gotta Pee

Nurse Jenny called this morning to let me know that I was supposed to provide a urine sample yesterday.

So now I am back at Duke.

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"Expanded Cohort" Correction

I am sitting in the hallway outside clinic 1C, waiting to be called for blood-letting.

I already met with Jenny and signed all the consent paperwork to get into the clinical trial. Oooh the list of side effects!

Here is the correction. I am in the expanded cohort -- but what does that mean? I am NOT in the group of people getting the highest dose. I am in the group of people getting the dose that is effective and best tolerated.

That is really great news!


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Ashley and Her Mom

A little over a week ago, I was adding a bunch of medical appointments to my calendar, and I was feeling sorry for myself, and then I got email that blew me away.  I got permission from Ashley to share it with you.


Hi Karen,

I found your blog about a year ago. My mom was diagnosed with LMS in January 2011. She too had fibroids - or what the doctors thought were fibroids - and she too had a hysterectomy after which the doctors discovered the cancer. At the same time, she had a cyst on her ovary that also turned out to be cancerous, and it ruptured before the doctors even realized the cancer was there. We live in NC and she too sought treatment at Duke with a Dr R, maybe the same as yours.

When I found your blog, I looked at your smiling face, with short hair, on the  homepage, and I thought, that is not my mom. My mom can't do this, she can't make it through 4+ years of the poking, prodding, testing, waiting... But I remained hopeful. While her doctors gave her around 18 months to live, I told her about your blog, and how you have made it, living with this cancer, not dying from it.
But after radiation & a few weeks of chemo, she said, "I can't do this anymore. I would rather have only 10 days of being at home & smelling my roses than 10 years of this treatment." For a few weeks after, she seemed ok. She even stopped taking her pain meds altogether.

On memorial weekend, I was visiting my parents, and my dad sprained his ankle. My mom & I took care of him, together, one last time. She died on June 25, 2011.

Now, reading your blog is like reading an alternate universe, one in which Mom is still here & undergoing treatment.

I don't even know why I am sharing this all with you. I guess i just wanted to let you know that you inspired hope in myself & my family while Mom was fighting her own cancer, and I know you have inspired so many others whose doctors have told them they would not live with this cancer longer than a number of months. And I am praying for you, I AM cheering you on. It's like you & my mother, although strangers, were on the same team, and now I'm cheering you on to take the team to the finish line.

Yours,
Ashley N

Vitamin T News Flash

Bailey must really think that Vitamin T is necessary to support her general well being, because she gets a big dose as often as she can. You're not familar with Vitamin T? I'm no doctor, and I hesitate to give medical advice, but... It's toilet paper. Bailey loves eating it. She doesn't just enjoy how it magically flies off the roll in the bathroom, but she munches it down like nacho chips. We have to keep all the bathroom doors closed, or else she might overdose.

Lou and I both have colds. This must be some kind of superbug, because Lou caught it. He never gets sick. He has the strongest immune system. Of course, it helps that he comes in contact with few people, living his hermity life working from home.

One bright spot: new Kleenex cool touch tissues. OH DEAR GOD these are so awesome. Worth every penny. My nose was raw, and now it's not. I wish I could wrap up my entire body in these tissues. Too bad these guys aren't running my clinical trial.

Let me lay out what's going to happen next week, because it's a BIG week.

Tuesday: early morning I go to Duke all by myself for fasting labwork, and then I eat breakfast somewhere and zoom to work. In the late afternoon, I go back to Duke for a CT Scan, which will serve as the baseline for the clinical trial.

Thursday: mid-morning I go to Duke all by myself for the first skin biopsy. It's called a punch biopsy, which indicates that you'd rather get punched in the face than have it done to you. This will be the first of six skin biopsies! Afterward, I zoom to work, unless I am a big baby and decide to go home to watch movies all day.

Friday: early morning I go to Duke with Lou and John, with John driving and me fasting, for the first tumor biopsy. It's an ultrsound-guided biopsy, so it ought not to be as grueling as the CT-guided biopsy I had in 2009. They use conscious sedation, so I cannot go to work afterward. I cannot sign official documents, either. Afterward I go home and watch movies all day. This will be the first of two tumor biopsies.

Super Bowl XLVI

I am always as old as the Super Bowl. So this year, it's Super Bowl XLVI, and I am XLVI years old!

Of course, at the end of March, I'll be turning XLVII.  Ooh, ooh, now that I am fooling around with Roman numerals, I realize that Lou is L years old.  Poor Lou.  L must be hell.

This is the calm before the storm. In about an hour, people will start trickling in.

We are completely ready. I have a cold, so I had nothing to do with any food prep. Actually, I had very few tasks assigned to me this year. Lou did almost everything. I was responsible for prepping the hallway coat closet. There are now 30 empty hangers in there, and all dust bunnies have been banished.

I'm hoping at some point tonight, Lou will take my picture, so I can update the photo on this site.

After I am done here, I think I am gonna have a quick lie-down. I don't want to run out of steam before the game is over.

So, here are some details about what I have been calling Option 3. From now on, I'm going to call it The RAP Study.  That's what they call it at Duke.  And Lou always pipes up with, "Wanna rap?"

It's a Phase I trial of the IGF-1R antibody AMG479 in combination with Everolimus and Panitumumab in patients with advanced cancer.

If you were counting, that is three drugs:

• AMG479
• Everolimus
• Panitumumab

But I am getting only two of them. I am not getting the Panitumumab.  That part of the study will happen later.

At one point, I suggested to Dr R that maybe I should wait till all three drugs become available, and he said he's not that excited about the Panitumumab. He thinks it's better to get just the first two. (If you are reading this at some point in the future, and you are getting all three drugs, then I am sure Panitumumab is super awesome, and Dr R just said that to dissuade me from dilly dallying!)

Everolimus is a well-established mTOR inhibitor. The clinical trial is to see how well it works in combination with a new drug, AMG479.

I wonder why they are calling it "The Rap Study." Those three drugs don't spell RAP.  More like AEP, which is kind of un-pronounceable.

Yesterday morning, I started updating our shared calendar (which shows up on our mobile phones) with all my appointments. They have been coming in email from Duke. Paperwork, labwork, tests, scans, biopsies, yikes.  I was a little overwhelmed yesterday. Then late in the afternoon, I got this amazing email out of the blue that totally blasted me out of that funk.

I'll have to tell you more about that email after I reply to it.

So now I am ready for my appointments. Bring It On. This Rap Study might be exactly what I need to kick some cancer butt.

Blind Date

Twenty one years ago, Lou and I went on a blind date. We had dinner at a Chinese restaurant followed by a folk music concert at a fancy coffee shop in Westboro, Massachusetts.

Lou was the smartest, most charming guy I had ever dated. Also the first guy who made more money than me. Since we were both in computers, we had a lot in common.

I had a great time. But after that first date, he threw away my phone number. These days, he claims it was an accident.

Anyway we are hanging out today.

I am getting email from Duke to set up all my appointments.

On Valentine's Day, I'll go in the morning for labwork (requires fasting). Then I'll go to work for a few hours. And I'll finally head back to Duke in the afternoon for a CT Scan to get the official measurement of how much cancer there is before the clinical trial starts.


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