Saturday, March 31, 2012

Been There, Done That

Once again, chemo has made me diabetic!

My blood sugar has been creeping up, and now I am officially diabetic. Let's hope it's temporary. It was temporary last time (winter 2009 to spring 2010).

My primary care physician explained that an A1C over 6.4 is diabetic. Mine is 6.8. So I am just a little diabetic. But the team over at Duke says it will just get worse. So I started restricting my carb intake, checking my blood sugar levels, and taking a really low dose of glimepiride (Amaryl) a couple days ago.

Lou is happy. Well, perhaps "happy" is a bit strong. But planning meals is admittedly easier when both people are counting carbs. No more, "Let's have pancakes!" outbursts.

I figured I had better get the word out.

For my birthday, master cookie baker Tinalynne sent me a huge bag of yummy homebaked chocolate-chip and mini-M&M cookies. To be honest, we saved four cookies in a baggie, and I brought the rest to work. I left them in the breakroom. Wolves descended. Cookies were gone in record time.

Also for my birthday, my friend Carol gave me white and dark Godiva chocolate balls. OH MY GOD. The single dark chocolate ball that I ate was amazing. (I had to give away all the white chocolate balls because, really, they aren't chocolate, and they creep me out.)

Other birthday presents did not present any diabetic difficulties: a fluffy pink and brown cuddly knitted throw from Sylvia, a gorgeous Waterford butter dish from Mom and Dad, an amazing cast iron teapot from Cindy and Mike, a pretty glass bowl from John and Pat, and a NEW COACH BAG from Lou.

How lucky am I, right?

Tuesday, March 27, 2012

Happy Birthday To Me!

Today is my 47th birthday!

That still mid-forties, right? I am not in my late-forties yet.

This has been a great day. Lou delivered a cuppa to me in bed, made me breakfast, and then gave me all the presents that have been arriving in the mail from my wonderful friends and family.  Awesome. I am working from home today, so that I could be here when the landscaper came to talk about Spring Cleanup. Plus I got to go to lunch with Lou.

I am feeling really good. I know my last post was pretty serious, but it was really good to get it off my chest, because I felt a whole lot better immediately afterward. Actually, right after I clicked Submit, I found Lou and told him all about it and cried a little and got a big hug. (I always have to warn Lou if I post something serious because then people call him and he feels silly if he has no idea what they are talking about. He doesn't read the blog, he says, because he gets to live it!)

I appreciate all the calls and email and comments from all y'all.

For some reason, my mindset is firmly back into putting up with the chemo, and staying as healthy as I can, while I wait for someone to come up with a cure.

Sunday, March 25, 2012

Two Milestones

Recently, I have had two milestones on this journey. They aren't nice milestones. And, I think that they are related.

Milestone one: chemotherapy finally made me throw up. I know, it's almost impossible to believe that I have not thrown up till now. I have had so much chemo. And I have been nauseated, let me tell you. But I have always been able to control it with meds, till the Sunday before last. You know what, it wasn't all that bad either. I really hate to barf, don't get me wrong. But I guess I had built it up in my head that chemo barfing would be super awful. It wasn't. It was just normal barfing. And since all I had eaten was applesauce, well, it could have been worse.

Milestone two: based on my bloodwork, I had to skip chemo. Till now, I have been lucky. My bloodwork was always good enough to proceed with the next dose as planned. But last week, because my platelets were too low, we had to change the plan. Don't get me wrong. I was thrilled to change the plan. I just want to note that this was the first time I haven't bounced back quickly enough.

These two milestones might mean nothing.

Or they might mean that things might start to get a little more difficult.

No way to know. Just got to soldier on, see what happens next.

That was dramatic. It came out that way. It sort of surprised me. But I guess I should admit that I am upset about something, and I have not wanted to write about it. So maybe I will just blurt it out and get it over with.

In the last few years, I have "followed" three cancer survivors' blogs. I love those three people. Daria was a breast cancer lady in Canada who posted sweet comments to my blog and just drew me in with her stories about day to day life fighting cancer. Marco was a guy out in California with a soft tissue sarcoma whose blog I found because he was taking the exact same clinical trial drug that I took in the winter of 2010. It was his wife (The Wife) who blogged. I was always jealous of Marco because they let him have surgery. And Jean was this super funny, brilliant lady in England who had leiomyosarcoma, exactly what I have. The thing is, they have all died.

First, Daria went, and it was a huge shock to me. Stupidly, I hadn't prepared myself for that possibility. I remember crying and feeling awful, but also feeling weird because I never actually met this lady, I just read her blog and felt that she was my friend. It was hard, but I still had Jean and Marco. I stuck close to Jean because we had exactly the same cancer and took a lot of the same chemo. Oh, but every milestone for Jean gave me something else to worry about. Like, when suddenly she couldn't walk and was writing about life in a wheelchair. Then she died, and I was really upset. I feel bad about this, but I started skimming The Wife's posts about Marco. I put some distance between us in my head. Just in case. Like I had to protect myself. And now his fight has ended, too.

Daria and Jean are still on my list of followers, and sometimes I go look at their pictures. Marco probably never even knew that I existed. Because I am not following anyone else, those last few posts about Marco are sitting there at the top of my reading list, and I see them every time I come in to post something. So I guess I finally had to talk about it. But I am not ready yet to look for someone new to follow. I'll know when I am ready.

Friday, March 23, 2012

Port Authority

My beloved port has been acting up for a couple of weeks. Crazy slow blood return, perfect blood return, and then yesterday absolutely no blood return.

Blood return is when the nurse uses the port to pull blood out of me.

A port is a small medical device implanted under the skin in the upper chest so that drugs can be injected directly into the jugular vein, which is a lot easier than getting an IV every time I go for chemo. My port, which I love love love, is a Bard Power Port.

Yesterday was so bad, the nurse could neither get blood return nor flush (which is to push saline into me). Now that is bad! Till yesterday, they could always flush.

So when I got up to the chemo treatment room, I knew that they would have to TPA my port. That's when they inject some nasty cleaning fluid to melt away whatever blood clot was blocking the port from working. Then they draw out that nasty cleaning fluid and discard it. While the cleaning fluid is in there, they hang a note on me that says "Do not flush!" so no one flushes the cleaning fluid into me, although one nurse told me once that it would not kill me.  Nice.

Two weeks ago, the nurse TPA'ed me, but only for 30 minutes and resulting only in a tiny improvement. So yesterday we knew we were in for a much longer wait.  It took an hour and a half, but then my port was running perfectly again.

As a result, Lou and I didn't get outa Duke till 2pm. We went to lunch at Elmo's Diner in Durham, and finally got home at 4pm. I collapsed on the couch. I was exhausted. I guess it's a combination of chemo and stress, but I am completely wiped out on chemo day.

So, I am headed to work, but I am going to be late. I slept ten hours last night, on top of dozing on the couch in the late afternoon.

Saturday, March 17, 2012

Spontaneous Happiness

On Thursday, after we got the good news that I was not having the tumor biopsy and that I was off chemo till the following Thursday, I turned to Lou and said, "Let's go away for the weekend!"

We had been talking about running up to DC to see the shuttle Discovery arrive at The Smithsonian at the end of the month... but this weekend was a gift. I was practically guaranteed to feel great, so we had to go somewhere.

First, of course, we had to figure out how to get home from Duke!  Ha!  Two people could not help, but the third could.  (Christy, we love you.)

Anyway, we spent 30 minutes at home surfing the web, and we chose to come to Orange, Virginia, to see the home of James Madison, our fourth president. Yesterday they celebrated Mr Madison's 261st birthday. So we are here for his birthday.

Plus, earlier this year, I read Founding Gardeners, which was about how some of our founding fathers were very interested in agriculture and gardens and the amazing natural abundance of America. Madison was in there, a big section on how he laid out the gardens and forrest at Montpelier, and now we are going!  In a couple hours I'll be walking in those gardens.

Plus, Lou just finished reading James Madison, which was the story of his life and his contribution to the constitution.

So Montpelier, as a romantic weekend getaway, could not be more perfect for us!

Thursday, March 15, 2012

Cancellation Day

The tumor biopsy has been cancelled!

Turns out, my platelets are too low for surgery. They dropped to 44. The minimum required for surgery is 50.


I immediately asked for some water.

Then Lou got on the phone to cancel Mo driving us home at 4:00.

I called Christy at work, and she's on her way to get us.

Right now we are outside, enjoying the fine sunshine, happy to be going home.

Sent from my Verizon Wireless Phone

Wednesday, March 14, 2012

Hope Time Flies

I hope that time flies on Thursday.

Too early, my alarm will ring. 5:45 to be precise. I get to have a normal breakfast but then nothing after 7:00, no water, no nothing.

John will bring us to Duke, and leave us there.

Labs at 8, Dr R at 9...

Then we just hang out for hours waiting for my tumor biopsy at 1:00.

This time, I will not have an IV in the back of my hand. That just hurts too much. My original plan was to get my port accessed for labs and leave it accessed for the tumor biopsy. But getting my port accessed can nauseate me. So I'll just go with the IV for labs, and another IV for the tumor biopsy, but refuse to let the IV go into my hand. Maybe I'll slap a bandaid on it to reinforce that it's off limits.

The tumor biopsy will be followed by 2 hours in recovery. We'll get out around 3:30 or 4:00.

Lou has arranged for someone to bring us home. Maybe Mo?

I should be asleep now but I'm wide awake.

Sent from my Verizon Wireless Phone

Monday, March 12, 2012

Medicate Me

In retrospect, I really let the nausea get out of control before finally taking a Zofran yesterday, but by then it was too late. Barfing was inevitable.

I think I was in denial about the nausea. I kept thinking that I couldn't be nauseated (even while I was holding my breath and pressing my hand to my mouth to hold back the tide) because nausea wasn't supposed to be a problem with this chemo. The paperwork didn't stress nausea, and the doctor and nurses only mentioned having anti-nausea meds on hand once.

Maybe I have had so much chemo, I'm easily nauseated. Nice.

Plus, I only took Zofran because Lou suggested it. My first reaction was like, "What? No." but then I thought, "Hmmm, he's usually right..." (Isn't that sweet?  Isn't that what every husband wants his wife to think?)

Today will be different! This weekend, the nausea arrived after every meal, so I have delayed eating breakfast till now. I am eating a half bowl of wimpy cereal as I type. Awhile ago, with my morning bucket of tea, I took a Compazine (another anti-nausea drug) with all my regular morning pills. I hope that Compazine + Small Breakfast = Zero Nausea.

Alas, the Compazine usually makes me sleepy. I could probably use some extra sleep.

So I am going to work from home today, just in case. I do not relish the prospect of running down that long hallway to the ladies room if I suddenly have to throw up. I guess the better idea would be to just barf in my waste basket in my office and then casually stroll down the hall to the ladies room.

Sunday, March 11, 2012

I Barfed

I took an anti-nausea pill at 3:30, and it seemed to be working, but then I barfed.

I feel better.

We're watching Psycho.

Sent from my Verizon Wireless Phone

Feeling Lousy

First of all, this is not nearly as bad as last summer. But it's not that great either.

I got chemo Thursday and also started the second drug, a pill, on thursday night.

I have ended up in bed fri, sat and now sun.

It's like just an awful feeling all over. A mix of pain and nausea. Plus my bulging disc is acting up.

Hey leave me a cheerful comment, will ya? I could use it. 95% of the comments I've been seeing lately are spam "buy drugs over the internet" comments that the website immediately removes, thank God.

I hope this chemo is working. I hope the pain is from tumors getting attacked.

Going to try to fall asleep now.

Sent from my Verizon Wireless Phone

Thursday, March 8, 2012

235 Million Dollars

This morning I am headed to Duke for chemo. Today, I have my first appointments in the new Duke Cancer Center, which cost a reported $235 million.

I am pretty psyched to see it. Staff who took tours have been telling me how pretty and luxurious and private it is. Like, instead of getting chemo in a big room where everyone can see you, you are in a little room in a super recliner, all private.  Hmmm.  I sort of enjoy the drama of other people and their families.

Back in 2010, when I first saw signage promising that the new cancer center would be open in early 2012, I wondered if I would be around to see it. (I am always thinking morbid crap like that, can't help it, but hardly ever share it because it makes people uncomfortable.)

So, I start my day with labwork in the new cancer center, then I go back to the old South Clinics to see Dr R (who moves next week to the new cancer center), and then I head back to the new cancer center for chemo at noon.  Luckily, both buildings are right next to each other. Lots of walking today. Got my new sneakers on.

Today I get BOTH chemo drugs!  Powerhouse punch!  Watch out, cancer, we're coming to get ya.

Monday, March 5, 2012

Happy Dance!

Been awhile since we did the Happy Dance, eh?

Nurse Jenny called me this morning to officially inform me that the clinical trial powers-that-be have decided to let me skip the rest of the skin biopsies, because of my complication this weekend  (that is, my stitches came undone and I had to get the wound re-cut and re-stitched on Saturday at a random  urgent care near my house).


No more skin biopsies!  No more holes punched, no more open wounds dripping with surgical lubricant, no more Saran Wrap in the shower, and no more stitches!

On Saturday morning, I thought that stitches unravelling was a bad thing. But it turns out that it was a good thing.  Ya never know.

Sunday, March 4, 2012

Such Neat Stitchery

I was really impressed with my replacement stitches when I took off the bandage this morning.

PA Chris at FastMed did an amazing job! I will have hardly any scar.

Nurse Jenny apologized profusely on the phone yesterday. Because of this "complication," she'll request that I get to skip the third set of skin biopsies, which would be awesome.

Sent from my Verizon Wireless Phone

Saturday, March 3, 2012

A stitch in time saves nine

My stitches came unravelled last night, so this morning Lou and I went to FastMed Urgent Care.

A PA named Chris did a great job. He had to freshen up the wound edges (cut away some flesh) and clean out the hole and then stitch it all closed, nice and neat, with good knots that won't unravel.

Chris is getting married this month, so we wished him luck and a long happy life.

I will post a photo of his handiwork tomorrow when the bandage comes off.

I sort of had a tearful meltdown over this, this morning. Just one too many things to deal with. But the tears freshened me up, and i feel lots better.

Sent from my Verizon Wireless Phone

Friday, March 2, 2012


I have a lovely stitched-up hole on my left arm, and another one on my right arm. This picture shows my left arm.

The nurse practicioner who stitched me up left this one sort of gaping open, huh?  Totally gross. I don't even want to look at it. I'm not sure if she just didn't do a great job, or if there's a medical reason to leave it gaping open. 

The rash is caused by all the sticky bandages.

They are harvesting these skin samples for research for the clinical trial, to measure how well I heal in a week, before and after chemo. I am happy to do this, in the hope that it aids their research so they can make the chemo more effective in the future.

First, they take a small sample skin sample -- that is, they make a 4mm hole in my arm. For the next week, I have to keep that hole covered up and lubricated, so it does not scab over.  (That is super gross.) Then, they take a larger skin sample -- that is, they make a 5mm hole around the original hole and immediately stitch the whole thing up.

It doesn't hurt, which is amazing. They really numb me up while they are doing it. Even when the numbness wears off, it doesn't hurt unles I whack it by accident. Of course, it hurts my brain to have to change the bandages and lubrication twice a day.

I have only one more set of holes to get through, starting with a small hole next Thursday.

Yesterday, I had my checkup, and I am fine.  My platelets dropped from 130 to 51, but that is not terrible. My blood pressure was a little high.