Friday, June 26, 2009

The Big Plan

The big plan is chemo, chemo, and more chemo! No surgery, no biopsy, no delays.

Chemotherapy will start this coming Thursday. We're going to try the gold standard for leiomyosarcoma (Gem and Tax) and then take a peek after six weeks to see if it is working. If it is not working (if something grows) then we'll switch to one of the other three chemo drugs that are effective against sarcoma.

Ladies, I am going to need rides to and from Duke for the first three weeks -- after that, the doctor will let me decide whether I want to drive myself based on how I feel. Nice.

So, now that we have the big plan laid out for ya, how about some details?

What did the scan show? The tumor in the psoas looks exactly the same, no shrinkage, but that is totally fine and expected. There are actually six nodules in my lungs (not four as previously reported) but the extra two are super small and evidence of them can be seen if you look back to earlier scans. So it's not like there are any new ones, just that this was a better scan. As for the pancreas, there is a 4cm mass in the middle. I got to see it! Dr Reidel pulled up the scans and showed me everything, whichwas awesome. The mass is still unfortunately a mystery.

Why not biopsy the pancreas? The doc explained that there are three things that the mass could be. And then he went on to describe the approach for each -- and it always came back to chemo. So basically, there is little point in a biopsy because no matter what the results are, the answer is chemo. We are going to watch the mass and watch my sugar levels (which would be a good indication that my pancreas is not working properly). If everything else responds fabulously to the chemo (like shrinks) except for the pancreas mass, then we would probably biopsy the pancreas mass later on... Oh, plus, if it is another cancer typical in the pancreas then the Gem I will be getting is a good chemo to attack that.

I love Duke! And Dr Reidel is great because he takes the time to explain everything and convince me and even spell things for me (because I am of course taking notes). I have more details to share but will have to save them for another post because it's time to go to breakfast.

Lou and I are in the Outer Banks. We spent the late afternoon on the beach, getting thrown about by ginormous waves. It was so much fun!

How you have a fun day, too.

Wednesday, June 24, 2009

Tomorrow is the Big Day

Tomorrow morning I hear the treatment plan. Perhaps I'll have some decisions to make. I am really looking forward to the meeting. I really want to get treatment started.

Plus, right afterward, Lou and I head for the coast!

The plan is to update the blog on Thursday night, when we are settled in at the hotel.

Sunday, June 21, 2009

Transition to Duke

Last Thursday, I called Dr Reidel's office to let them know that I have decided that I want Dr Reidel to be my medical oncologist. I told the nurse about Lou's idea: that maybe the sarcoma team would want me to have the new CT scan BEFORE they meet on Thursday to review my case. As always, Lou's idea was excellent. The nurse said that it might be a couple of hours, but that she would call me back that afternoon with the answer.

About an hour later, Dr Reidel himself called me! He wanted to know what the UNC doctors had to say about the mass in my pancreas, so I gave him an update. He postulated that a biopsy might be necessary but that we would wait and see what the team says. He said that his staff would make two appointments for me:

-- before the sarcoma team meets: new CT scan (with contrast)

-- after the sarcoma team meets: meet with Dr Reidel to discuss what the team decided

On Friday morning, Duke called me to set up the two appointments for this coming Wednesday morning (scan) and Thursday morning (meeting). Awesome! Everything so far has been excellent at Duke.

Now that it feels like we have the doctor thing under control, our thoughts inevitably have turned toward fun. So Lou and I decided that after the Thursday meeting, we will drive to the Outer Banks and spend three nights at a hotel on the beach.

We felt pretty safe making a reservation for Thursday night because we figured that there is little chance the doctors would want to do anything to me on Friday. (We know that chemo would start on a Wednesday or a Thursday.)

Oh, and we'll bring the laptop and use the free wifi at the hotel to update the blog on Thursday with the new plan.

So you are now up to date.

Saturday, June 20, 2009

The Stubby Pony Tail

I've been growing this pony tail since June 2007 (which is when the first round of chemo ended).
Not that impressive!

But almost good enough to be seen in public. I have even been looking at barettes and fancy elastic bands lately...

Now I know for sure I'm headed for the exact same chemo again.

I'll start losing my hair on the 21st day after chemo starts. So there's no hope of improving this pony tail. (Don't get me wrong, chemo is giving me lots of hope! Just not pony tail hope.)

Yesterday afternoon, I went to the fabulous EnV Color Bar Salon in Apex, and Renee, who is an artiste with cut and color, gave me an impossibly cute short style. (No photo available yet.)

Here is a final look at the pony tail:

Thanks very much to Jay who took these pictures for me at work on Friday.

Thursday, June 18, 2009

Definitely Having Chemo

Lou and I went to the Duke sarcoma specialty clinic for a second opinion about the proposed chemotherapy. We were both hoping to hear that chemo would not be necessary. Dr. Reidel at Duke was excellent. In fact, the whole experience of being there in Clinic 1B/1C was excellent.

Here are some of the things we learned:

Is chemo necessary for me right now? Yes, because the cancer has come back in multiple places. Chemo is the system-wide method of attacking the cancer. That is, you take the chemo, and it can attack any cancer anywhere. (In contrast, radiation and surgeon only attack the specific cancer you focus on.)

Is chemo effective on leiomyosarcoma? Yes. For leiomyosarcoma, 40% of patients receiving the Gem/Tax combo have a reduction in the size of their tumor. Now, reduction is a fabulous result; you're supposed to be happy if the tumor just stops growing. (Dr. Reidel confirmed what I saw on the web, that if there were no sign of cancer, then it is controversial whether chemo is effective as a preventative for future leiomyosarcoma. But alas that is not my situation.)

How rare is leiomyosarcoma? About 12,000 people every year are diagnosed with some kind of sarcoma, and about 2000 to 3000 of them are leiomyosarcoma. So, it is rare but not the most rare.

Why isn't surgery a good idea when the cancer has come back in multiple places? This is still hard for me to grasp intellectually, but the explanation we got today was that the surgery and recovery afterward wastes time before the chemo can start, and the chemo is more effective when the cancer is in multiple places because it is effective system-wide.

Oh! In case you haven't noticed, the visit was very pro chemo, which makes sense because Dr. Reidel is a chemo doctor! (A medical oncologist.)

Anyway, since chemo is defintely going to occur, I am planning on getting a cute short haircut at my earliest convenience. I can almost make a pony tail! I am so close!

I have saved the not-so-good news for last. Maybe some of you have already quit reading.

One of the things that Dr. Reidel did before he saw us was review all the scans that have been done recently. He told us that the MRI from May 27 mentions a 3 cm mass in my pancreas. Lou and I were floored. No one mentioned my pancreas to us!

So I had some homework today, to call my oncologist and my thorasic surgeon and find out what they know. I was hoping that they had already looked at it closely, determined that it is nothing to worry about, and just forgot to mention it to me...

I was scheduled for the lung surgery next Wednesday, but now that I have brought my pancreas to everyone's attention, that surgery is on hold. Turns out, there was no mention of the mass in the preliminary MRI report, only in the final report. Plus, this mass does NOT glow on the PET scan. Not all sarcomas glow, but my other spots glow "bright as light bulbs" (except for the two tiny ones, which do not glow). So it kind of got missed. Everyone is looking at it now however. No one knows what it is.

The thorasic surgeon will not perform the lung surgery unless I have a biopsy that shows this new mass is definitely not cancer. Someone is determining now if the mass CAN be biopsied. But we will have to decide if it SHOULD be biopsied.

Lou and I are leaning toward just going ahead with the chemo, forgetting about the lung surgery at least for now.

Sunday, June 14, 2009

Ginger Snaps and Ginger Ale

I have nothing exciting or momentous to pass along to you.

The last few days, I have been feeling fatigued, with a backache and mild nausea off and on. Naps work on the fatigue; Advil works on the pain; and ginger snaps & ginger ale work on the nausea. I sort of wish I knew how to make gingerbread. Anyone have a gingerbread recipe you want to email me?

On Friday night I went for a sleep study to see if I have sleep apnea.

On Saturday, Lou and I hung out at Chaz and Darlene's house in the old neighborhood. We had a super lunch and then a wonderful time floating around in the pool. It was awesome.

Lou asked me to make him a meatloaf for Sunday dinner.

Have I mentioned that I gave up putting sugar in my morning tea? For years I have been obsessed with my perfect morning tea: Tetley British Blend round tea bags, two per mug to get it good and black, with 1/2 teaspoon of sugar and skim milk. I used to drink endless cups of tea! But a few weeks ago, I gave up the sugar because it did not seem like a good idea every morning to send a little rocket fuel to the cancer. But ugh my tea is just not the same. At first I tried no sweetener at all, but now I use a sprinkle of Splenda. It is okay. But I have no desire any more to have endless cups. Two mugs seems to be my max.

Oh, I can hear that Lou has The Two Towers in the DVD player. Got to go.

Thursday, June 11, 2009

Good Day for a Sick Day

Jeepers! I am glad Nurse Jerry talked me into taking the day off.

I woke up feeling awesome but have had mild back pain, mild nausea, and then WHAMO a migraine.

But, I have to say that I feel pretty good emotionally.

Don't want to make my head hurt so I am logging off...

Wednesday, June 10, 2009

Done with CyberKnife!

All done! Time for a happy dance!

The treatment today was fast and dare I say almost pleasant, it being the last one. Although, knowing it was 292 individual beams and 500 CGy did weigh a bit on my mind; probably best that I did not know it was 292 beams when we started last week.

Afterward, Nurse Jerry convinced me to stay home tomorrow and rest. He suggested that I actually wait till Monday to go back to work, but if I am feeling okay on Friday, I am planning on heading in to the office. Probably will not be riding in the vanpool, though, since it might be best to have my own car with me in case I need to head home early.

I have a checkup in a couple of weeks, and then in three months they will take a peek at the tumor. I am not supposed to expect massive shrinkage -- but a lack of growth would be super fabulous.

Here is some even better news: I found out that I am meeting with Dr Feins next Tuesday to check in and set the new date for the lung surgery.

Plus, my wonderful primary care physician, Dr Derek Schroder, got me a second opinion appointment over at the Duke Bone and Soft Tissue Cancer Center with Dr Reidel for next Wednesday!

Any minute now, our new mattress will be delivered! Gonna have a great night's sleep tonight. Actually had another great might's sleep last night on Lou's side of the bed. I guess he has sort of enjoyed his couple of nights in the guest room away from me tossing and turning, but absence makes the heart grow fonder and he assured me that he is looking forward to vacating the guest room tonight ;^)

Sushi tonight for sure at yummy Genki Sushi near the corner of Kildaire Farm Road and Ten Ten Road at about 6:00PM (in case you want to join us).

Tuesday, June 9, 2009

Only One More Left

The fourth treatment is complete, with only one more to go!

Today's treatment went really well. It seemed to go fast. I had washed the Harry Potter CD in the bathroom, and there were no skips or pops this time, so I got to listen to an entire CD uninterrupted. One more treatment to go -- one more CD to go.

I ate a couple of ginger snaps before and after the treatment, and my stomach did not hurt today. Could be all in my head, but it worked.

I remembered to ask for the details: each treatment consists of 292 individual beams. The dose for each treatment is 500 centi-Gray units (cGy). So the total dose after five treatments will be 2500 cGy. That ought to kill the tumor, eh?

I got a really cool full color map of the beams -- Lou is going to scan it in for me so I can post it here.

I was not zonked out this aft, although I did take a quick nap.

Still no word when the lung surgery will occur.

Looking forward to going back to the office on Thursday!

Lou and I are going to scout the flower bed to try to find the spot where Mommy Snapping Turtle laid her eggs on Memorial Day. The eggs could hatch anywhere from 55 to 125 days. For more info see

Oh! The final treatment tomorrow will be super early. We need to be at UNC at 7:30 AM. Yikes. But they have five patients scheduled for the CyberKnife tomorrow, so it is going to be a looooong busy day for Nadya and the rest of the team!

Past the Halfway Point

The third treatment was fast! Plus, I snoozed off for part of it. I had been afraid to fall asleep in case I jerked awake and sent a beam to the wrong spot, but I am pretty well wedged in to this cradle thing and so probably couldn't move much.

I forgot to ask about the number of beams and the amount of radiation! Will try again today!

Lou had a glass of water waiting for me in the waiting room, which was so sweet because I am pretty thirsty when I get out, and then we were leaving the hospital by 10:15. Amazing fast!

But my stomach started bothering me during and after the treatment. We had a quick lunch and I went to bed for just a few minutes... and completely zonked out for 4 hours till it was time to take poor old Samantha to the vet for her ear infection. I wouldn't miss that because I am the one responsibile for washing those ears and wanted to find out if I had done it wrong...

I was kind of sleepy and unmotivated for the rest of the day. I sort of dreaded bedtime because I figured there would be no escaping the decadron wakefulness, but it did not happen. Lou gave me his side of the bed (which is comfy and squishy) and he slept in the guest room and I did take an Ambien and my goodness I slept solidly till 4:30 AM! Awesome!

I am hoping to hear today from Dr Fowler's nurse what the status is for scheduling my lung surgery. It's tricky because he is in London! But she sent him email on Friday.

We did not go to see a movie this weekend. Instead, we bought a new mattress. Yahoo! It arrives tomorrow afternoon. So both sides of the bed will be comfy and squishy! This time, we made sure to buy the kind that you can flip and rotate to minimize wear and tear.

This last little message is a little delicate. A wonderful friend sent me flowers on Friday, a really beautiful arrangement mostly pink! Lou placed it on the coffee table and it totally filled the room with scent. Well, over the weekend I had some pain and some nausea, and discovered that the smell of flowers does not help. This bouquet is still totally lovely but had to be moved to the dining room where it can be admired from a distance. Thinking ahead to lung surgery and because I have asthma, I guess I ought to avoid any more flowers!

Friday, June 5, 2009

Twenty Percent Complete

They had told me that the first treatment always takes longer because they are still setting everything up, and they weren't kidding because today was a breeze compared to yesterday.

I am not sure what time I went in for treatment, but I was out by 11:15 AM. My blood pressure was nice and low, both before and after treatment. In fact, I have never seen it so low! And right now I am not dreadfully sleepy. So today has been a lot better than yesterday.

Gerry the nurse verified that last night's insomnia was indeed the decadron (might be spelling that wrong) and he apologized for not warning me. Because I got the dose much earlier today, there is a chance that I will have my decadron wakefulness from like 6PM to 10PM -- which would not interfere with my sleep.

I wanted to collect more details for you. Let's see...

  • I counted 14 changes of position by the robotic arm before I got distracted by Harry Potter and stopped counting.
  • I saw a yellow caution sticker that read: Laser Radiation Do not stare into beam!
  • The part of the machine from which the beam is emitted is called the Laser Aperture.
  • I forgot to ask how much of a dose I am getting -- and how many individual beams I am getting. I really want to know. Maybe I will write myself a note for Monday morning.

So I get the weekend off! No more CyberKnife till Monday. Lou and I have been seeing a new movie every weekend -- has anyone seen Up? Should we try it?

What I am doing this afternoon that my blogging obligation has been met? I'll be ironing this stack of laundry ;^)

One Down -- Four To Go

It went really well today.

They moved the appointment from 8:30 AM to 12:30 PM, because they weren't quite done creating the "plan" for the CyberKnife to follow. So I got to sleep a little later and we even hit Costco on the way to Chapel Hill.

We waited in the lobby (with me reading a Betty Neels romance novel and Lou reading Brother Odd by Dean Koontz) for a while. It turns out they still weren't done the plan. All I could think was stuff like: No need to rush! Do a good job! Double-check your work!

At 1:40 PM till they gave me some pre-meds, and then fifteen minutes later they wheeled me away down a long series of corridors to the Cyber Knife room.

I'll probably have better details tomorrow. There was a small room filled with like five PCs, and on one of them was a four-camera display of the platform I'd be on so they can keep an eye on me. Then there was a bigger room with the CyberKnife and the bed-like platform and the CD player.

It was cold! But not too cold, especially since they had warned me to wear sleeves.

After I climbed up on the marginally bed-like platform, Nadya and Kevin both asked me, "Can you hear that?" and I was like, "Hear what?" and they both laughed and Kevin adjusted the volume on the CD player because they had already started the Harry Potter but too low for me to hear.

It seemed to take a long time to get me positioned just right and for the treatment to start. (For you Harry Potter fans, Hagrid and Harry were just arriving at Gringotts bank for the first time when the treatment started.) Dr David Morris was there too. He explained that the machine might come close to me but that it would not touch me. That was reassuring later because there were two moments when part of the robotic arm came less than four inches from my nose.

Once the treatment finally started, there was no pain. I had no trouble just lying there. The CyberKnife is this large articulated robotic arm with lots of joints so that it can WHIR and CLICK and move into all kinds of different positions to point at the tumor from a different spot. Because they hit so many different spots, I probably won't have that radiation sunburn skin irritation.

Harry Potter was a great idea! But at some point near the end of the second CD, it started skipping and was blasting Wah - Wah - Wah - Wah at me which was way worse than any of the whirring and clicking noises of the robotic arm so Nadya came back in and shut it off. I hope we don't get skips tomorrow too! (For you Harry Potter fans, it was right at the point on the train to Hogwarts where Draco Malfoy is introducing himself to Harry.)

My blood pressure was a bit elevated afterward. Just seeing 208 over 97 was enough to elevate it some more! So we hung out for about 30 minutes till it dropped and we could go home.

We went out for Chinese and got home at 7:00 PM and I was very sleepy. No nausea and no pain. Lou stayed with me instead of going to poker which was really sweet. We watched a Stargate and then I dragged myself off to bed to fall right to sleep... but then later I WOKE UP ABRUPTLY. This time, I was sure that my arm was supposed to be in a protective brace, but Lou assured me that this was not so. (That man is a saint.)

And I just have not been able to fall back to sleep. I feel as though I drank lots of caffeine and might never sleep again. Sort of a bummer because I have to get up in 5 hours because tomorrow the appointment is for 8:30 AM.

I did not take the sleeping pill (which has worked brilliantly the last two nights, not waking up in a panic, no nightmares) because I was so sleepy and I figured there was no need. But, I am thinking that tomorrow night I will take it.

A couple people phoned tonight but we just let the phone ring. I was incapable of coherent speech anyway, because I was so sleepy. So, if we ignored you, I apologize and say thanks for calling!

Wednesday, June 3, 2009

Treatment Starts Tomorrow

Tomorrow the CyberKnife surgery finally starts!

It seems as though it has taken a long time to get to this point. It was like April 17 when the nurse first call to tell me that there was "a spot" on my 3-month x-ray.

Recently there have been a few people who seem surprised to see me, and they exclaim, "You're back already! How did it go?" And I have to explain that I haven't left yet, that nothing has happened yet. All we have been doing so far is having tests and collecting more information.

On Memorial Day, I saw a snapping turtle in our big flower bed and we took pictures of him sitting there, blinking at us and not doing much. Eventually Mr Turtle started walking toward the little pond next to the house, and my Dad got a fantastic shot of him striding through the grass, moving surprisingly fast.

I hope that this is a metaphor for my cancer treatment. It has been pretty slow so far, but we're about to get moving and accomplish a lot. And perhaps there will be some sushi along the way. Turtles eat sushi, right? Not bugs?

Lou posted the rest of the turtle pics on

Monday, June 1, 2009

Procuring Harry Potter on CD

Lou and I took your advice and had a wonderful weekend.

It started Friday night with dinner out with our neighbors at a fantastic Italian restaurant in Garner called La Piazza, where I got to sit with my closest neighbors' grandaughters and talk about puppies and girls who keep their Barbies mint in box as an investment (we disagreed with the practice).

Lou and I went to see the X-Men Origins Wolverine movie, took a walk at Crowder Park, and generally had a lot of fun.

This morning I talked to my primary care physician about how I am not sleeping well and keep waking up in a panic because I have forgotten to take my drops! (I have no drops.) After that, I went to work and made a lot of headway on an issue that has had me flummoxed for awhile.

On the way home from work today, I stopped in at the Cary Public Library with the mission of checking out the CD version of the first Harry Potter book, Harry Potter and the Sorcerer's Stone, because I'm supposed to be able to bring a CD with me to CyberKnife on Thursday, and I decided I wanted it to be Harry instead of music.

Oh, so I finally got a library card after almost three years here!

At first I couldn't find Harry anywhere. I was bummed, but I chose a murder mystery that I was NOT guaranteed to enjoy, and then headed for the checkout desk when the sign Juvenile Audio Books caught my eye. Harry, strangely enuff, is not kept on the adult shelf.

So, I have Harry. Now I just need to pick my outfit for Thursday. What does one wear for radiation?