Friday, February 25, 2011

Hats On Sale

The pain in my chest is not completely gone, but it has been dramatically reduced.  I am taking Advil once a day now, instead of every six hours.

This is great news. To me, it says that this chemo is working.  Yahoo!  Happy Dance!

Last night I stopped by JC Penney because they sent me a $10 coupon.  Those coupons are hard to resist.  Anyway, I wandered around looking for something to buy, and I found that the entire collection of casual hats (like, cheery vacation straw hats) are all on sale at a whopping 30% off!

I tried on a million hats and eventually fell in love with one.

With the discount and the coupon, I paid $7.53 (including tax) for this most excellent hat.  (Okay, math whizzes, what was the regular price of that hat? Show your work.)

I need to go to the ribbon store. It would be cool to change the ribbon to match my outfit.

Hair loss expected to begin in 8 days.

Wednesday, February 23, 2011

Vitamin S (sleep)

I think that I have to get a lot of sleep in order to function well.  When I was on Gem/Tax chemo in particular, I remember that it was critically important to get enough sleep.

I had to get up early on Tuesday to get to the doctor's appointment on time, and the entire day was messed up because I was exhausted.  I ended up leaving work at 1:00PM and going home to bed.

So last night, I went to bed at a reasonable hour without setting my alarm.  I woke up at 7:28AM on my own, feeling good.  Really well rested.  So I hope that today goes well.

I was sort of excited yesterday because I got through the entire day without any pain and without any Advil.  But then last night at 2:00AM, I woke up in pain, took three Advil, and went right back to sleep.

Tuesday, February 22, 2011

Looking Good

My checkup went well.

My neutrafils count is low (1.4) but that was to be expected.  If you see me, don't sneeze on me.

My hair will start falling out again 3 to 4 weeks after the first dose, so that looks like anytime after March 5.

Monday, February 21, 2011

Hope and Despair

I am re-reading all Lee Child's Jack Reacher novels. The first time through, I was really careful to read them in order, so I could get all the character development as it occurred. 

But now, I am just reading whichever one strikes my fancy.  Tonight I started Nothing to Lose, which is the one where Jack bounces between the two towns of Hope and Despair in Colorado.

I personally am not bouncing between hope and despair.  I am firmly in hope.

I am also in a bit of discomfort, which is why I am awake and reading and blogging.  I just took three Advil, and I am waiting for relief so I can go to sleep.

Tomorrow morning, my alarm goes off at 6:00AM so I can get to Duke for 8:00AM for my checkup.

Okay, got to get back to Jack.

Mixing Advil and Tylenol

I slept great last night!  I didn't wake up at all till 8:00AM this morning.  I think that I got nine hours of sleep.

So this morning I feel very good. Momentarily I will quit fooling around with my computer, jump into the shower, and get to work. Samantha is here at my feet, keeping an eye on me, determined to make me walk her before I leave for work. But Lou says he will walk her at lunchtime, instead.  It is going to be like 76 degrees today.

There is something that I need to talk about tomorrow when I have my checkup.  Three times this week (Friday, Saturday, and Sunday), the three Advil took away all discomfort for awhile, but long before the next three Advil were due, I was seriously discomfortable.  [I know that's not a word.]  So I took two Tylenol and felt fine after about 15 minutes.  I need to make sure that they know that the discomfort comes back early sometimes, and I need to make sure that it is okay for my kidneys to mix the Advil and Tylemol.

Anyone have good experience with acupucture for pain control?  Anyone have a local practicioner you recommend?

Sunday, February 20, 2011

Pan-Massachusetts Challenge

My cousin Sean will be riding in the Pan-Massachusetts Challenge to help raise money for cancer research in my honor!

Here is the link to Sean's profile for the ride:

Saturday, February 19, 2011

Quilty Goodness From Aunt Peg

I am all wrapped up in quilty goodness from Aunt Peg as I sit here in the cold kitchen tapping away on Nick's old laptop. 

My Aunt Peg mailed me a person-sized quilt from the Prayers and Squares Ministry at St. Paul's Episcopal Church, Chapter 804, in Sparks Nevada.  Aunt Peg and other folks made the quilt and said prayers for me. Every knot represents a prayer said for me.  There are a lot of knots here, in cool dark green thread. One of the knots is a tidy bow, but the rest of them are just floppy dangly hopeful strings.

Tonight has not been the best night.

Lou and I were both exhausted, so we went to bed early, but then I could not sleep.  So I got up and surfed the web and picked out a couple of books at Barnes and Nobel dot com.  I was pretty excited about these books, something new and intriguing to read now that I can focus again.

But when I finally crawled back into bed, that discomfort started again pretty strong.  I thrashed around a bit and woke up Lou unfortunately. I was due for more Advil. (Have I mentioned that I have been taking Advil about every six hours, because the discomfort keeps coming back?  I do not think that this is a good thing, all this discomfort.  I wanted the first dose of chemo to make it go away, but apparently I will have to be more patient.)

I decided to check my hospital discharge papers.  The paperwork suggests 600 mg of ibuprophen every six hours.  I have been taking only 400 mg.  Throwing caution to the mind, I upped my dose to 600.  Of course I didn't get instantaneous relief. To spare Lou more thrashing about, I dragged myself out of bed to my office.

I wrapped myself up in my new prayer quilt and decided to say the rosary.  (It has been ages since I have wanted to do that.) When I realized that I would be reciting the Sorrowful Mysteries because it is Friday, I started laughing out loud.  I was feeling pretty sorry for myself and all my discomfort.  It was perfect to read about Jesus's prayers and pain and troubles instead.

And by the time I was done, the Advil had kicked in and I felt a million times better.

Now I am ready to crawl back into bed for the third time tonight with two simple hopes: a) do not wake up Lou and b) fall asleep already!

Friday, February 18, 2011

Just Sam and I

Just Samantha and I are up right now. Lou is sleeping still.  This never happens. He is always up before me.  I plan to bring him a cup of coffee in bed very soon. It's an opportunity not to be missed.

Yesterday was a loooong day.  I woke up at 5:00AM, was up for a bit, power napped till 10:00AM, and then I amazingly stayed up for most of the day and sort of puttered around the house.  At one point I took Sam for a slow walk around the short loop and ran into three sets of neighbors.

I was still having trouble focusing enough to read fiction, but I did watch some TV.

Tonight Tom and Gerry deliver a meatloaf dinner. There is an entire schedule for neighbors to make us dinner every other night.  It is awesome!  I couldn't believe it!  I am a little foggy but I think it was all Pat's doing, going from door to door.  I couldn't cook anything this week.  Lou couldn't have cooked, what with trying to work and keep on eye on me.  The first night, Peg delivered a ham dinner, and there was some heated debate as we attempted to determine fair distribution of the roasted potatoes.

At some point yesterday, I dropped a small container of water that I use to fill the steam iron. When I soaked up the spill with towels, I missed a big puddle on the hardwood floor between the guest bath and my office where I iron.  So the next time Lou checked on me, he stepped in the puddle. "What's this?"  As I explained, I knew we were both thinking about how the doctors told him to watch for sudden clumsiness as a symptom of the neurologic toxemia... But I am fine.  Nothing else dropped.  No more up-side-down helicopters for me. 

I feel pretty good right now.  I am going to log on to work and look at email, see if I can put in some time today.

Thursday, February 17, 2011

Awake and Alert

I am awake and alert right now!  Of course, I just got up from a crazy three-hour nap.

I have taken only decadron today for the nausea; I haven't had to take either compazine or zophran today. Those are the meds that zonk me out.  I hope that the nausea days are coming to an end.  Maybe the first three days after this chemo, I'll get nauseated every time.  I can outlast three days of it -- with the right meds of course.  I am not one to grin and bear it.

Somehow I let my NetFlix queue go completely empty!  So here I am with no red envelopes, no movies to watch.  I filled up my queue yesterday though, between naps, so there will be some movies coming soon.

It has been really hard to read, so even though I have a couple of books to read, I have not been able to do it.  Takes too much focus.  But my 2011 office calendar finally arrived from Barnes and Noble.  Calendars are so on sale right now, 75% off.  I got one of Ancient Egypt, so I can enjoy the sights even though we won't be there this year in person.

This morning I did wake up at 5:00AM in discomfort, that same discomfort that I had been feeling for about the last 3 weeks before we found out that the cancer grew.  I was a little disappointed.  I wanted immediate gratification: one dose of chemo and a complete absence of discomfort.  Oh, well, I'll have to be patient.

Anyway, at 5:00AM there was nothing to do except iron some of Lou's handkerchiefs.  That is when I knew that Thursday would be a better day, when I felt the desire to iron a bit.

Tuesday, February 15, 2011

heavily medicated today

I got nauseated several times today and am sort of heavily medicated now but happy to be home for sure.

for years i have wanted to be called for jury duty and ironically today i get summoned

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out of hospital

yesterday evening i became nauseated and got a compazine shot that sort of zombified me. but it totally toook away the nausea.

we left the hospital and got to the hotel just in tine to watch hawaii 5-0. but i zonked out and slept great.

now we are in hotal cafe waiting for eggs.

jogn picks us up at 8am to finally get me home. i can see why they told me not to drive myself home.

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Monday, February 14, 2011

starting chemo 3 now

my third and final dose of chemo for this visit has just started. yahoo.

doane and julie were here for awile and we had a lot of laughs. julie brought me a sweet friendly monkey with a sign that says Kick Some Cancer Ass.

the nurses here loved the monkey.

lou and i are gonna watch a movie now but i wouldn't be surprised if i just fell asleep.

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decadron energy

Last night I was so exhausted, I curled up carefully so as not to get tangled in my IV cord, and fell right to sleep.  But then after 11:30 someone came in looking for blood, and I woke up and the decadron kicked in.  I was WIDE AWAKE and ANTSY.

I went for a 20 minute walk to burn off some energy. I looped around the elevator tower a bunch of times all by my lonesome.

Then I spent some time surfing the web for coffee mugs and dessert plates for my fine china pattern.  The traditional cup and saucer is lovely but very small at 5.5 oz.  Plus each cup and saucer would cost $79 bucks!  And I need 6 of them.  Yikes.  I could deal with that if they were bigger.  But why pay so much for a couple of sips?  Luckily there is a newer mug too at 13 oz and just $39 each -- and no saucer is required.  Nice!  But I was not prepared toactually make a big purchase fueled ny decadron.  Better to let some time go by when I amnot under the influence of a steroid.

Happily, the nurse came in and offered me Ambien to help me sleep.  I accepted, and it worked.

Sunday, February 13, 2011

two down, one to go

I finished my second dose of ifosfamide a little while ago. It went well. There were about 15 minutes at the beginning where I felt completely gross but then the anti-nausea drugs kicked in and I feel fine.  Overwhelmingly tired though.

Today was fun.  Jose and Dan visited me, and they brought Valentines roses! We had a lot of laughs.

Then later Susan and Vicky dopped by too.  They brought me cheesy popcorn.  And we had a lot of laughs.  Plus they got to see the intern doctor give me the neurological test, which is pretty silly to watch.

I am so completely exhausted.  I am going to go right to sleep now.

helicopter pad

On the way to the elevator, we pass theis view to the helicoper pad. Too cool.

I am sorry that this photo is upside down. I can't figure out how to flip it. This is NOT a sign that I am confused or delusional however.

I am still feeling fine. Today's chemo starts at 6PM.

one down, two to go

I survived the first dose of ifosfamide.  Actually, it went very smoothly. The chemo started at 11:20PM and I was hyper-vigilant till the bag was 75% empty, then I relaxed and started dozing off.  The bag was empty at 12:20PM.

No nausea, no confusion, no blood in my urine... it's all good.

I am tired though.  It is really hard to sleep in the hospital.  Lou stayed with me all night, which was very reasurring, but he just left a little while ago to go to the hotel and sleep a bit.  Before he left, we went to the Starbucks down by the cafeteria.  Awesome.

I have already seen Dr R this morning.  We talked about how well it is going so far and what the rest of the weekend will be like.  It seems likely that I'll be discharged around 9 or 10 PM Monday, and if so we'll crash at the hotel and head home on Tuesday morning.

So far I am fine and looking forward to visitors today.  I'm going to text Doane my room number...

Saturday, February 12, 2011

chemo in a few minutes

The actual chemo will start very soon.  I have had a bucket of saline, some kind of drug to protect my bladder, and now the anti-nausea stuff is almost done.  Chemo comes next.

Lou is dozing.

BEEP BEEP BEEP anti nausea drugs are done.

comfy cozy

I'm in bed, in my pjs, as comfy cozy as can be expected.

I talked to an intern doctor and had a neurological test to set a baseline. He and Lou talked a lot about watching me for signs of confusion and delusions, and Lou refrained from making any jokes.

I just ate dinner, which was fruit salad, green salad, peas and carrots, and freaky mini chicken pot pie. Unsweet tea so I know I am still in North Carolina. Ooh and a teeny choco cake.

I just met my nurse Susan who will be giving me the chemo tonight. a bunch of pre meds have to occur and the best guess is that the actual chemo will be administered at 11 pm.

Whenever it happens, tomorrow's dose will be 4 hours earler.

There is wifi in my room!!! So no more typing on my frickin cell phone. Lou is unpacking Nick's old laptop for me right now.

Okay so i am done for now.

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got a room!

Wow, it is 4:30 and Dr R just called to tell me that they are cleaning my room now. So we are heading over to Admissions.

Wish me luck.

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wandering around duke

Lou and I are wandering around the hospital getting oriented.

We checked into the hotel already. He's got a microwave, fridge, and free wifi in the room which will be nice for him.

lunch in the cafeteria was fine: freshly made deli sandwiches.

we are sitting in the lobby listening to a lady pianist and just waiting for the phone call to hear that have a room.

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What's Going to Happen?

I don't know what's going to happen this weekend. 

All I know is, at some point they will phone me to tell me they have a bed ready for me. I will get the chemo for one hour on each of the three days. Both before and after that hour, I'll get other drugs and probably lots of fluids to flush the stuff out of my system.

My friend Jean in England said that she had this chemo combined with Doxorubicin, and she had significant shrinkage, so that makes me happy.

I am bringing my laptop so I can play Bookworm, and I have two books that I have already read before.  I am hoping to pick up a People magazine in the gift shop when we get there.  But maybe I won't want to read or play games at all, who knows.  Lou suggested that I bring my George Washington biography, but I think that would be too much work.

I have not had time to surf the web for details and hints about this chemo.  So I am going in with no expectations.

I was talking to my good friend Lisa about the extremely rare side effect that Dr R mentioned.  It involves brain damage (neurologic toxemia?) and then you are permanently confused.  Lisa said not to worry because if it happens, I probably won't know it.  I laughed so hard!  Good point, Lisa!  Lou posited that we probably wouldn't be able to tell....  ha ha ha that was a little less funny, but then again he is the one who always has to remind me about everything.

Okay got to go.  Lou wants to pack my laptop.

I'll be sending updates from my cell phone, unless the nurses confiscate it.  Cut me some slack if my spelling, capitalization, and punctuation suffer.  We won't know if it is the drugs or the cell phone keyboard.

Friday, February 11, 2011

Visibly Surprised

I always think that I am invisible as I go about my business, like a swan silently gliding across the surface of a quiet pond on a foggy day. (Maybe I am more like a duck than a swan.)

I always think that people do not notice me or do not remember me, and I am always surprised when I learn otherwise.

About a week ago, I was trudging up the hill from the parking lot to the office, when there was a cute guy suddenly walking beside me.  He started talking to me about how we must be on the same schedule because we walk into the building at the same time every day.  I had absolutely no clue what he was talking about. I would swear that I had never seen him before.  But I smiled and nodded like I knew him.

Anyway, he wanted me to know how great my hair is looking, that it was really growing back fast now.  He sort of delicately asked about my health status, and so I said that I had been off chemo since September.

He told me all about his aunt who had just finished getting chemo and radiation.  And he wished me luck and said that he's praying for me.

Wow! Awesome!  I am telling you, at some point God has to get tired of hearing all these prayers for me and cure me just to stop the cacaphony.

Thursday, February 10, 2011

That's Too Cool

wow it worked.

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Cell Phone Revolution

This is a test to see whether I can post an update to my blog from my cell phone. 
If it works, then maybe this is how I’ll keep in touch while they have me locked down this weekend in the hospital. 

Can I Blog at Duke?

Lou is on the phone right this minute with Duke to check whether there is WIFI in the patient rooms on the ninth floor at Duke, and the answer is NO. 

Hmmm.  We are hoping that this person is just misinformed.  Anyone know for sure?  I remember at UNC there was WIFI down in the lobby.

I am thinking that I might be bored spending three days in a hospital bed, and so I was hoping to be able to surf the web and check email and blog.

If I get all six treatments, that will be a total of eighteen days in a hospital bed.  Eighteen days! 

Lou just mentioned that I am supposed to be able to post to my web with my cell phone.  I'll have to look into that.  Or maybe I'll write the blogs and then Lou can post them when he leaves.

Si vis pacem, para bellum. 
If you want peace, prepare for war. 

(Two years of Latin in high school, baby!) 

In my mind, I change that quote to mean:
Karen, if you want health, you gotta attack the cancer with this nasty chemo.

Hey, I hope to have visitors this weekend.  Saturday will be crazy, but I hope someone drops by on Sunday.  Maybe you should call first.  If it is not cool, then I will change my cell phone voicemail greeting to ask you to stay away.  Ha, so if you know my cell phone number, then you are included in my open invitation.  I am remembering hospital visits that were made to Valerie, and Jacob, and Jerry.

Wednesday, February 9, 2011

More Chemo Needed

The new is not that great.  I do not have the report in front of me, so I cannot give you exact measurements. 

But basically, three of the tumors in my lungs grew noticably, and that might be the discomfort that I have been feeling lately.  A few additional little ones appeared in my lungs.  The tumor in my pancreas also grew.

The tumor in my psoas muscle, however, is still just a charred and smoking lump that neither grows nor shrinks, but whimpers in defeat.

So, it is time for chemo again.  I have had a lovely five months off, and I have enjoyed it alot.  But now it is time to buckle down and beat back the cancer a bit.

“Now this is not the end. It is not even the beginning of the end.
But it is, perhaps, the end of the beginning.”

Sir Winston Churchill, in a speech in November of 1942

I am going to start ifosfamide as soon as possible, this Saturday.  This chemo is complicated and has serious side effects, so I will be in the hospital for three days while I get it.  Then I get three weeks off, and then another three days in the hospital.  Repeat as needed up to six times.

That is all I have for now.  Time for lunch.  I think it's got to be sushi on a day like this.

Tuesday, February 8, 2011

Bagels, Lox, and Results

The plan for tomorrow morning is as follows:

  1. Lou wakes up as usual at the crack of dawn.
  2. I sleep till 7:15AM.
  3. We leave the house at 8:00AM.
  4. We get bagels and lox for breakfast on the road.
  5. We zoom up to Duke for a 9:30AM appointment with Dr R to hear my scan results. 
  6. When we leave Dr R, our first phone call is to Patsy and Omer.
And whatever comes after that depends on what we hear from Dr R. 

Monday, February 7, 2011

Today is Scan Day

This morning on the news, Lou and I watched an interview with those two journalists who were beaten within an inch of their lives by a crowd in the middle of an Egyptian protest.

The guys were describing how they were pummelled and bleeding but just focusing on staying on their feet and pushing through the crowd toward safety. When asked what kept them going, one guy said, "I have a lot to live for."

That simple statement resonated deeply with me.

I am looking forward to today's scan so I can find out what is going on in there, find out why I have had all these transcient, minor pinpoints of pain in my chest area for the last couple of weeks.

If there is growth, then by golly let's start beating it back with the big stick called "Whatever Chemo is Next on the List."

Maybe there is no growth. When I took my AHCC capsule this morning, the thought occurred to me that maybe all that minor pain is from the natural killer cells attacking the tumors.  That would be nice, huh?  My little janitors doing a spring cleaning in my lungs?

Wednesday, February 2, 2011

Twenty Years Ago Today

Twenty years ago today, I went on my first date with Lou.

We met through a "dating newspaper." (There was no internet dating back in the stone ages.) Lou had actually responded to my best friend's ad, not mine, but I found his letter in her stack and asked if I could have him. (Our ads were exactly the same, except she had long blonde hair and I had short red hair.)

Lou and I talked on the phone a few times and decided to meet for dinner at a Chinese restaurant called Cheng Du in Westboro, Massachusetts. Then as a surpise, he took me to a coffeehouse to listen to a folk music band called Schooner Bay.

I remember that I had a great time, even though I nearly caught fire after accidentally eating a hot red pepper from the General Tso's Chicken. We were both in computers, and it was really awesome to talk to someone who understood what I did at work.

After that first date, though, Lou threw away my phone number. (He didn't tell me that for a long time.) But I called him back, and I guess it was meant to be, because we are still together today. I am so lucky to be married to such a great guy!