Friday, May 29, 2009

Fortified by Coffee and a Muffin

Lou and I met with the spinal surgeon first thing Thursday morning, and he showed us a printout from the MRI. The tumor in the psoas is actually 4cm, not 2cm. But don't worry, it did not double in size in the last week! It is just that different diagnostic tools show different details.

The spinal surgeon said that he thought 4cm might be too large for CyberKnife, so he explained at great length how he could operate. But it would be a long recovery (eight weeks) and he could not get it all out.

So then Lou and I went to the coffee shop and talked about regular surgery vs CyberKnife. Our heads were spinning a bit. Every test reveals new information and radically changes the proposed solution...

Fortified by coffee and a muffin, off we went to see the CyberKnife doctor. We sat around for a long time while the oncologist, spinal surgeon, and CyberKnife doctor conferred via telephone in another room. I read aloud to Lou from an old copy of Men's Health magazine, which is quite hysterical and interesting and not at all like Better Homes and Gardens.

Anyway, the upshot is that CyberKnife can indeed handle the 4cm tumor. It is a little large, but they have successfuly treated tumors as large as 15cm. The MRI was very helpful and worth 70 minutes and an achy shoulder. We talked about the risks of radiation, which unfortunately do not include glowing in the dark. We decided to go ahead with the CyberKnife instead of regular surgery. (We can always do regular surgery later if we need to.)

CyberKnife starts on Thursday, June 4!

I had another CT scan right away. That data will be fed into the computer so they can plan all the beams. The treatment will be split into five days because we want a really high dose for the leiomyosarcoma.

The interesting thing is that the radiation will mess up the cells so that they can no longer divide and grow, but it takes weeks or months for the cells to actually die. It's like spraying Roundup on your lawn; the weeds don't keel over right away.

Thursday, May 28, 2009

70 Minute MRI

A lot happened today that I have not processed yet, so instead I am gonna tell you about yesterday.

Lou woke me up at 7:00 AM so we would have time to watch the last episode of season 7 of Stargate SG-1, which would kill the disc so I could send it back to Netflix. Turns out, the last epsiode of season 7 (The Lost City) is two hours long! We had to quit halfway through so I could make my 9:30 AM meeting. Imagine letting work get in the way of Stargate.

My back bothered me all day, but I got really involved trying to figure out how to revise this one chapter that has apparently been confusing a customer... and at one point I realized that an hour had flown by without me even thinking about my back. Awesome. Who knew work could be therapeutic?

I could not eat or drink anything after 1:45 PM, so I set up an Outlook reminder at 1:30 and had a cookie and a cup of tea and a bottle of water.

At 5:00 PM, I curled up on the floor under my desk and tried to relax my back. I had forgotten to take more Advil and Tylenol before 1:45 PM and was suffering the consequences. Lou called me at 6:05 PM to wake me up because I was afraid I would fall asleep and miss the darned appointment.

The hospital seemed pretty empty and quiet when I arrived at 7:30 PM.

I'll skip ahead to getting loaded into the machine. The MRI person put headphones on me and explained that I needed them so that she could talk to me when I was in the machine. She loaded me into the machine with one arm straight back over my head (so I would fit more comfortably) and tucked a comfy pillow under my knees. I also had my legs crossed at the ankle which was very comfortable -- for awhile.

I got inserted into the machine, which was a slightly tight fit but okay. Like a big hug! Then the machine started clanking and hooting and banging and I did not hear anything on the headphones for a long time. I started to wonder, what if the headphones weren't working? Maybe she was talking to me but I couldn't hear her. Or worse, maybe she had keeled over dead from a heart attack and I was stuck in this machine with no one at the controls...

Clearly I needed to stop that line of thought.

Instead I started thinking about the black and pink fabric I bought for that skirt I am going to be sewing. Gosh darn it next time I am buying a pattern with pockets.

Anyway, after about a million years, she finally came over the headphones and told me to hold my breath. There was a lot more clanging and honking and vibration and then she said I could breathe again. That happened a bunch of times. It seemed to go on forever. My ankles started to ache, but I was afraid to uncross them in case that messed something up. And my shoulder really started to ache. I had this ball in my hand which I was supposed to squeeze if I needed help but I didn't want to be a wimp.

Then she came on the headphones and apologized for how long it was taking. But she didn't tell me how much longer. I really wished she had. So I started composing a polite yet pointed little speech about how she could improve her customer service. (I knew I would never say it out loud but it was fun anyway.)

Finally my shoulder was so on fire, I had to squeeze the ball to call for help because I couldn't take it anymore. She answered right away and said there were just two minutes more. So I counted! I must count slow because I was only at 65 seconds when she pulled me out.

She said I had been in there for an hour and ten minutes! Yikes!

As I got dressed, I gobbled the granola bar and bottle of water I had in my pocketbook. Then I was free! Not much traffic on the road. The whole ride home I was thinking about how I would be coming back first thing tomorrow morning for all the doctor appointments. When I got home, I got a big hug from Lou.

Wednesday, May 27, 2009

A Little Pain

All last week, I kept telling the doctors that I feel fabulous and that I would never have known the cancer was back. Feeling really good made it sort of hard to believe all this was happening. How could it be back -- in five places -- when I feel wonderful?

Well, since Sunday, I have been feeling less than fabulous. I started feeling a dull, achy, minor pain in my lower back. Luckily, Advil and Tylenol are enough to handle it. And last night, it also started in my mid-back and lungs, a minor unpleasant ache when I take a deep breath. Again, Advil and Tylenol are working.

I left a message for the oncologist this morning to inform him of this change and see what he suggests. I think I had better get someone to tell me if it is a good idea to be taking both Advil and Tylenol. When Lou was in excruciating pain, our primary care physician told him he could take both ibuprophen and acetaminophen because they don't interact because they work completely differently from each other.

When I was feeling good, I was already pretty anxious to get the Cyber Knife started as soon as possible, but now I am even more motivated. My MRI appointment tonight cannot come fast enough!

Oh, but it turns out that since this is an abdominal MRI, I cannot eat or drink for six hours before the MRI appointment. I found that out when I called over there yesterday to make sure I didn't need to do anything special in preparation for the MRI. Good thing I called! The plan had been to go out to dinner before the MRI. If I had done so, then I wouldn't have had the MRI, which is required for my appointments tomorrow!

One final note: Interesting how a little pain dims the cheerfulness. I started to wonder about the grumpy people I run into in my daily life. Sure they can be a pain in the neck -- but maybe they're actually in pain.

Sunday, May 24, 2009

Upcoming Events

Here is the schedule of events for the upcoming week, which starts with Memorial Day:

Monday: Dinner at Karen and Charlie's in the old neighborhood. We're bringing black beans.

Tuesday: Work!

Wednesday: Work! plus an MRI at 7:45 PM

Thursday: Three doctor's appointments:

  • 9:00 AM spinal surgeon
  • 11:00 AM radiation planning
  • 1:00 PM CT scan

Friday: Work! plus Patsy and Omer fly home.

My parents have been such a huge help! Everything would have been so much harder to deal with without them. They told me that they will come back if we need them -- but I hope the next time they come, it is for fun and relaxation only.

If we need them, Patsy says they can drive here and finally bring me this ironing board that they have been holding for me for about five years. It is sort of an understatement to say that I enjoy ironing. I would love the opportunity to iron on this ironing board. It is the ironing board from my childhood, a huge heavy old one that my parents cleaned up and re-painted and refurbished for me. Patsy says it was a Christmas present, before they got married, from Nana and Grandpa (Patsy's parents). That's 1960! They knew how to manufacture an ironing board back then! Built to last!

Saturday, May 23, 2009

What Happened on Friday?

On Friday, Patsy woke up with what we thought was the swine flu, so we prudently decided that she could not come to the hospital with us! (She is actually just having some seasonal allergy symptoms and is feeling fine.) So Omer stayed home to nurse Patsy back to health, and Lou and I went alone to the hospital.

Here is some great news: I am a candidate for CyberKnife surgery! 95% sure it will happen! We won't know for sure till they look at the MRI next Thursday. If there are creepy tendrils coming off the psoas tumor, then I would need regular radiation instead of CyberKnife.

I learned that I am in pretty good shape; that I could be having some unpleasant effects from the psoas tumor but I am not. Like lots of pain, loss of balance, that kind of thing.

I also learned that I would be able to go ahead with the lung surgery (to remove those four nodules) really soon after the CyberKnife.

The following not-so-good news is just a dose of reality.

The psoas tumor is actually right up against L4 and has eaten away a bit at the bone. I was sort of horrified by that because I pictured termites eating away at load-bearing beams. But Dr Morris said it wasn't that bad. It does NOT mean that the cancer is "in the bones."

I probably do not have the choice of regular surgery versus CyberKnife. The choice is probably between CyberKnife and regular radiation. Regular surgery so close to the spine is possible but fraught with possible complications (like ending up in a wheelchair).

Dr Morris made it clear that, although they probably can kill this psoas tumor, and the surgery can remove the nodules in my lungs, that I ought to expect the cancer to come back again at some point. I mean, there are five spots right now, so statistically speaking, it will probably be back.

So the plan has to be:

  • We get rid of it now.
  • We keep watching for it.
  • We get rid of it whenever it pops up.
  • We make sure that I am around in the future when even better options become available!

Thursday, May 21, 2009

No Surgery on Friday!

Everything seems brighter and more hopeful today.

I have already talked to Dr. Feins (thoracic surgeon) and have an appointment this afternoon to talk to Dr. Fowler (oncologist). Lou is upstairs compiling our list of questions. He is just so awesome and logical and got a lot of good info last night from our buddy Bob on Fox Island.

The surgery for tomorrow is cancelled.

There is a chance that they are going to offer me cyber knife surgery at UNC to take care of the mass in the psoas muscle, and then after that we will deal with the lungs. Cyber knife surgery is just too cool!

We also called to inquire about the Bone and Soft Tissue Cancer Center at Duke.

Yesterday I was so bummed out, I actually declined sushi for dinner. [GASP] That's the first time in recorded history that I have ever declined yummy raw fish. But you know what? I'm thinking that if I play my cards right, I might get sushi for lunch today ;^)

Wednesday, May 20, 2009

The Suspicious Mass is Cancer

After I called twice looking for results, the nurse finally called me at 4:20PM today and said that the results had just been posted and that the biopsy was "positive" which means the 2 cm mass is cancer. Darn it, not the best news.

Then the nurse said that my oncologist will talk to the thoracic surgeon tomorrow to see if we should go ahead with the surgery on Friday, and that "someone will call me tomorrow." You know, that just is not good enough. I need to talk to my oncologist in person. I have four blobs of this stuff in me and about a million questions.

Early this evening, I had a long talk with my old friend Debbie who suggested that I consider finding a sarcoma specialist, which is advice that she found after surfing the web for me today. She also suggested that I should set up an appointment with my oncologist, but by the time I called over there, everything was shut down for the night.

You know what, though? Lou and I surfed the web for awhile tonight and found that in 2008 Duke opened a sarcoma specialty center, and they actually list leiomyosarcoma as one of the 50 things they treat. We got the phone number and we are going to call there first thing tomorrow.

So, thank you, Debbie!

If anyone else wants to surf the web for me, please feel free. I can use the help. Darn it, I want the best treatment possible because I am not done having fun yet!

Tuesday, May 19, 2009

Two, Six, Fifteen, and Twenty

Let's run through some interesting numbers:

2 cm = the size of the mass in my psoas muscle.

6 hours = the length of time we spent at UNC yesterday from start to finish.

15 cm = the depth they had to go to get to the mass.

20 gauge = the size of the needle they used for the biopsy.

The biopsy was interesting and not really awful at all. The local anesthetic injection was probably the most painful part. I was on an IV with "conscious sedation" so I didn't feel much more than occasional pressure and a complete lack of anxiety.

I was on my stomach on the bed part of the CT machine. They sent me into the machine to locate the mass. Then they pulled me out to mark the spot and insert the needle part way. Then they sent me back in to see how close they were to the mass. Then they pulled me back out so they could insert the needle further... I went in and out of the CT machine a lot, but it didn't occur to me to try to keep count.

Anyway, they got a good sample and we should hear tomorrow what it is.

Today, I feel fabulous and am enjoying my last day of vacation. My lower back is a little sore and stiff. Patsy got a lovely new hairdo by Renee at the EnV salon in Apex. Later we are going to the fabric store to get some fabric and a pattern so I can sew myself a skirt with my excellent sewing machine that my friends at work gave me in December. So life is good.

Sunday, May 17, 2009

Jimmy Buffett Ate at This Table

We are having so much fun here in Charleston! We haven't even left yet, and I am looking forward to coming back some day. Last night at 9:45, after our guided walking tour of scandal and murder, we ended up at Hyman's Seafood for a late dinner. The girl seats us and Lou looks down to see a little plaque on the table in front of him that says "Jimmy Buffett ate at this table." No better way to end the day.

We are heading back to Raleigh this morning, a day earlier than planned, so I will be there for the biopsy tomorrow. We are supposed to hear the results on Wednesday. The lung surgery has moved to Friday to give us time to get the biopsy results -- but it might not happen (depending on the biopsy results).

Lou says I have to get moving now because our plan is eat breakfast, check out, go to the Angels and Demons movie, and then hit the road.

Friday, May 15, 2009

Live Long and Prosper

Lou and I had not been to a movie since May 2006 when we were visiting Raleigh to decide if we wanted to move here. We saw Thank You For Smoking, and it was great.

So last night when we got to Charleston, we walked down to the Hipodrome near the Aquarium and saw Star Trek on a very big screen. We liked it a lot. (We have been to Star Trek Conventions.) There were only four of us left in the theater for the entire credits and the final "In Memory of Gene Rodenbury and Majel Barett Rodenbury."

But you're not here for a movie review.

We got the call yesterday with the PET Scan results when we were about 100 miles from Charleston, and we almost turned around to go back to Raleigh. There is a mass in my psoas muscle near L4 and I need to get that mass biopsied before Dr. Feins will go ahead with the lung surgery.

So the doctor asks, "Have you had any low back pain?" And I am like "No, no... oh but my left hip aches so much some nights I cannot sleep." Bingo. Why did I never think to mention that to anyone?! Argh!

Carol Q, can you remember what month it was that I begged off our lunchtime walk outside Building T because my hip hurt? That is the first time I remember hip pain, and maybe the doctors would be interested in knowing when it started.

So we are waiting to hear right now if we are headed back to Raleigh TODAY for the biopsy or if it will be on Monday. We have the day planned: sightseeing... or just driving home right quick for a medical procedure.

Keep ya posted...

Wednesday, May 13, 2009

No News Is Good News

With my imagination, sometimes no news is no good.

I had the PET Scan on Monday and by golly I was ready for the results on Tuesday morning. The nice lady who answered the phone at the doctor's office told me that it would take two days for them to get back to me with my results. I'm no mathmetician but Tuesday plus two equals Thursday. How could I wait till Thursday?

Luckily I have been very busy at work. I have been trying to finish EVERYTHING which is just silly. At some point today, I gave up and decided to finish just two medium-sized tasks. The rest can just sit there and wait for me to get back.

And now I am officially on vacation!

Lou and I are driving to Charleston, South Carolina, tomorrow morning for four days of relaxation, fun, and sightseeing. Thanks to April, I know that there is a Tea Festival this weekend near Charleston. Thanks to several of you, I know that I have to eat shrimp and grits.

I am looking forward to temporarily forgetting about all my troubles.

What I won't forget is how great I feel tonight after reading all your comments and email. I can't thank you all enough for reaching out to me and helping me feel loved. I know I can handle whatever happens.

Monday, May 11, 2009

Messed Up One Test by Laughing

I am not a morning person, so I wasn't very happy when the alarm went off at 5:30AM and all I could have for breakfast was a cup of water. But I was looking forward to passing these tests and knowing for sure that I will have surgery on May 20.

Today was a nice cool rainy day, in the high 50s, which reminded me of summer in Seattle ;^)

For the PET Scan, this student nurse did a great job starting an IV in my arm so she could give me sugary radioactive saline. When the syringe with the radioactive stuff arrived, it was in its own little impressive lead-shielded container but no one had to put on a lead apron or anything. I had to sit around for an hour waiting to become radioactive enough, so I said the rosary and then finished reading a romance novel.

The PET Scan iteself went fine. I am a teeny bit claustrophobic but luckily what makes me anxious isn't being jammed into giant tight medical equipment but being trapped in small crowded waiting rooms or stuck in line with too many people at Costco.

When it was all over, I bid my student nurse a pleasant goodbye and headed for the elevators and my next test. But then I realized that I still had the IV plug in my arm. So I had to talk to the receptionist, who had to track down my student nurse, who dragged me back down a quarter of a mile of corridors to the treatment room and removed the IV. Hope she didn't get in trouble for that.

The PFT (pulmonary function test) was next. The technician, Ray, kindly let me wolf down a granola bar and more water before we started. I have done spirometry tests before at the asthma doctor, but this guy was much more serious about it. I think I did the hard test six times, and the easy test three times. Plus he clipped my nose shut so all my air flow would go through the machine. And he made me laugh which messed up my ability to "blow, blow, blow, blow, don't stop, keep blowing!" The interesting part is that taking four puffs of albuterol didn't really have much of a positive impact on my numbers. (Well, I found it interesting.)

I do not know how long it will be before I hear the results.

Patsy and Omer arrive tomorrow! I must go make up the guest room now. I am so glad that my parents are coming. Patsy is addicted to Animal Crossing, and because Omer is a Good Husband, he is carrying her Wii onto the plane so she can play while she is here. Apparently there is a lot to do to keep her town going and earn more bells (I have no idea), and she doesn't want to run the chance of getting cockroaches in her house because she stayed away too long taking care of me and Lou!

Sunday, May 10, 2009

Two Tests Tomorrow

I will spend tomorrow morning at UNC Chapel Hill taking two tests that I have to pass before they'll do the surgery.

The first test is a PET scan. They want to make sure that there isn't cancer everywhere or some big tumor hiding somewhere. I guess the idea is to find out if there is anything else we need to take care of before we focus on these four little nodules.

The second test is a PFT (breathing test). Because I have asthma, they want to make sure that I am okay for lung surgery. Have I mentioned yet that they will staple my lungs back together after they cut off the nodules? that I will leak air for awhile? and that I will have a tube on each side coming out of me so the air leaks to the outside and does not fill up my chest cavity? [yick] I wonder if the tube will whistle when I laugh.

Wish me luck on Monday at 8:00AM and then at 11:30AM!

Send me good thoughts!

Saturday, May 9, 2009

What a Long Week!

On Monday morning, Lou and I met Dr. Richard Feins at UNC and were really impressed. He told us all about the CT scan results and how he plans to remove the four nodules on my lungs. I am easily grossed out, but it was nice how animated he became when talking about all the cool technology he'll be using on me. It will be minimally invasive, thank God. He is going to go in between my ribs with a scope and a video camera. Oh, but first I have to pass a couple of tests next week. More on that later.

On Monday afternoon, I used email to step down from all my committee chair positions because I really want to be able to focus on getting better -- without worrying about agendas and deadlines and making decisions that affect other people.

On Tuesday, I talked to my boss and started the ball rolling for short term disability leave.

On Wednesday, I told a lot more people and then watched a lot of Stargate SG-1 episodes via Netflix and pretended that nothing was wrong in my life. Lou was really busy cancelling all our summer vacation plans and then booking us a sweet quick trip to Charleston SC next week! Yippee, four days of fun before all heck breaks loose! (Have I mentioned yet that I am married to the best guy on Earth?)

On Thursday and Friday, I worked super hard because I realized how much stuff I should finish before I disappear temporarily from work.

On Saturday I slept late and then surfed the web trying to figure out how the heck ya start a blog.

Karen's Cancer Backstory

In January of 2007, I had a hysterectomy because I had lots of girl trouble caused by lots of fibroid tumors. Fibroid tumors, nothing to worry about! But when the pathology report came back, it said that they had also found a huge leiomyosarcoma embedded in the wall of the uterus. Oooh, bad news. But at least it had already been removed.

So I did chemo from February of 2007 to June of 2007.

The July 2007 CT scan and a bone scan showed no sign of the cancer! Yippee!

I started getting chest x-rays at 3 month intervals, and they showed no sign of the cancer...

In October 2007, I had fabulous laparoscopic surgery to repair a hernia from the hysterectomy.

My regular chest x-rays continued to show no sign of the cancer.

The party finally ended on April 4, 2009, when the regular chest x-ray showed "a spot" that the oncologist did not like. So they sent me for a CT scan. The April 23, 2009, CT scan showed four nodules on my lungs, two on the right and two on the left. The best thing to do with leiomysarcoma is to get it out of there as quickly as possible.

That is where we are at now: getting ready for surgery.