Wednesday, July 29, 2009

No More "Bad" Chemo

I have always thought of the three weeks that comprise my chemo cycle as Good Chemo, Bad Chemo, and then No Chemo. Occasionally I called them Easy Chemo, Rough Chemo, and No Chemo.

But technical writers always worry about terminology and words and connotations, and so it finally struck me that "Bad" and "Rough" were not perhaps the most positive terms to use -- because our words shape our thoughts, and our thoughts shape our reality. Do I really want a bad or rough week?

So, I am switchin' over to Super Chemo for the second week. Gem and Tax together are super effective in attacking the cancer! They take a super long time to be delivered! And they require me to get super hyped up on Decadron! Yeah baby!

And for the third week, instead of No Chemo, I am going to try Vacation from Chemo. (I'm not in love with that one; call it my first draft; I am open to suggestions.)

Therefore, tomorrow is my first Super Chemo day. I am driving myself even though both Meredyth and Anna checked in to see if I need company. I feel great and want to drive myself while I feel so good. Later, if I am not feeling so great, I will ask for help and companionship.

I have really enjoyed being a redhead all week at work! It was sort of hard to keep the wig on today because my stubble is practically JUMPING off my head, which made for an itchy wig experience.

Tomorrow I will go au natural because what the heck if I can't walk around bald at the Oncology Clinic at Duke and enjoy the breeze then by golly that just isn't right! (Plus last week I saw two lovely bald ladies wandering around the clinic.)

I surfed the web and found some studies where breast cancer patients experienced like 77% reduction in some side effects while receiving Healing Touch during treatment. So I have an appointment for Student Amelia to practice on me again Friday afternoon after my Neulasta shot. I just am still shocked at how awesome I felt all week. I will try to gather some info and post it here, including some links.

Friday, July 24, 2009

Got My Head Shaved

My hair started falling out significantly on Wednesday. At first I wondered if I could postpone shaving my hair because, let's face it, I would much rather have hair than not. But on Thursday my hair was practically jumping off my head. I had to keep brushing it off my shoulders. Yuck.

At one point yesterday I sat on a bench in a pretty garden area at Duke, ran my fingers gently through my hair, and let tufts of hair float away on the breeze... too bad it is not springtime so the birdies could use my hair in their nests. Right after chemo, I went to the place where Lou gets his hair cut and got my head shaved. The lady was sort of traumatized. She said she had been a hairdresser for seven years and this was the first time she had to do this. So I had to console her ;^)

Yesterday's treatment went really well. My platelet count is back up so they let me have chemo. It's Sarcoma Week at Duke, so I got a bunch of freebies: tote bag, binder full of helpful info, a cool rubber bracelet, and a happy Caribbean cruise style hat. In the treatment room, I had a tag team of nurses, Annette and Karen, who were funny and entertaining. I got out of there at about 2:30.

Today I feel totally fine.

I wonder if I feel so good because Amelia (a Healing Touch student) did energy work on me on Wednesday evening, which was wicked cool.

Thursday, July 23, 2009

CyberKnife Checkup Results

The CyberKnife checkup went really well.

We ran through all my side effects (which were minimal) and talked about how the pain from my hip and lower back is Gone Gone Gone! The pain actually went away after the second CyberKnife treatment.

We also talked about the decision to have CyberKnife versus traditional surgery, and I am so happy we went with CyberKnife.

So much has happened since the last time I talked to Dr Morris, so I also updated him on the switch to Duke's sarcoma specialty center and the decision to go with chemo and to forgo the lung surgery. I realized, as I was explaining things, that I am 100% behind the decision to go with chemo. I still wish I could have had the lung surgery, but my regret is not nearly as sharp as it used to be.

I will receive all my monitoring at Duke, and Dr Morris does not need to get a copy of my results unless it is bad news, which makes sense. Plus, I am totally free to continue calling him with any radiation questions which is good.

I asked for a list of things to watch out for. I got a short list. The first item was if the hip pain comes back, that could be a sign that the tumor is growing. Makes so much sense! Then there were some symptoms that are sort of gross and I won't mention here that could indicate radiation side effects. So this was a really excellent checkup.

The checkup also gave me an opportunity to say goodbye to UNC. I got a lot of good care there.

Tuesday, July 21, 2009

CyberKnife Checkup Tomorrow

Tomorrow morning I go back to the UNC radiation oncology department for my first checkup after CyberKnife. The plan is that all future checkups (and monitoring of that tumor) will be done at Duke.

Sometimes I forget about the CyberKnife! It was such an amazingly easy process, and the side effects were minimal...

However, I have wondered if the radiation is contributing to the amount of side effects I am having now with chemo. Even though the first cycle of chemo went extremely well, I would have to say that I have had a lot more side effects this time. Two years ago, I do not think I had any side effects in the first cycle. Certainly no dry mouth, and certainly no foot numbness.

Oh, did I forget to mention that the bottoms of my feet have been feeling numb? That super special side effect did not kick in last time till about the 4th cycle.

Retraction: Lou and I did not stroll through the arboretum this weekend! Instead, we ran errands and laughed a lot and watched Gran Torino, which was awesome. I did sweep the bark back into the flowerbeds, but I see that the heavy rains yesterday undid some of my good work.

Saturday, July 18, 2009

Bouncing Back

This is my "off week" which means I did not get any chemo on Thursday. Every third week is an off week, a vacation, a chance to bounce back.

I woke up this morning feeling really great, as though I had bounced back overnight.

Lou and I were in the hot tub at 7:00AM. I realized how energized I feel when I found myself looking at the flowerbeds back there and thinking that I should spend some time this morning cleaning up the bark that last night's heavy rain washed out of the flowerbeds... I must be feeling energized if I am thinking about yardwork!

I'm making blueberry pancakes for breakfast.

Lou and I are thinking about walking through the arboretum today in Chapel Hill, but nothing has been set in stone yet.

Wednesday, July 15, 2009

Goodbye Sparkly Raspberry Lipstick

This has been a pretty darned good week so far! I have already accomplished a lot at work, slept really well, and ate some sushi. There were minor and transient bone pains and muscle spasms, but nothing that was not solved with some Advil and Tylenol. The most annoying problem has been my dry mouth.

On Monday, I attended a lunchtime seminar called "Look Good, Feel Better" where I got a bunch of makeup and some strategies for trying to look my best during chemo. There was a really strong emphasis on not contaminating your makeup, and I had this epiphany that continuing to use my favorite old lipstick is probably not a good idea especially now that my immune system might be compromised. (Yes, I really do have an old Clinique lipstick in exactly the right raspberry color with sparkles that I bought at least six years ago. No, it is not all dried up! It works fine! Yes, I will go throw it into the trash as soon as I complete this post.)

On Tuesday afternoon, I noticed that my tongue had turned white. A big white floppy tongue filling up your mouth, yech, that's not right. So the minute I got home, I rinsed with salty water and phoned Duke and chatted with the oncology resident on-call who reassured me that as long as I had no fever I was okay to wait till Dr Reidel could call me tomorrow. (If you are wondering whether my white tongue might be related to the scary old lipstick, it is just not true.)

On Wednesday, I sipped Gatorade, coffee, ginger ale, milk, and water but nothing really worked to keep my mouth moist. Well, the rice pudding helped. Mmmmmm. But no matter how much you like rice pudding, you just cannot keep your mouth full of pudding 24 hours a day. I read online that there is artificial saliva. The first time I read that, I gagged, but the idea is starting to appeal to me.

Tomorrow, I will have bloodwork done, check in with Dr Reidel, and then try to catch at least part of the Chemo Orientation seminar where I hope to get more info about how to deal with my dry mouth. And then if I have any energy left after work, I plan to go out to dinner with Carol for North Carolina BBQ. Lou does not really care for vinegary North Carolina BBQ, so Carol and I will have at it while he is playing poker. Marriage is about compromise.

Friday, July 10, 2009

Ten Fun-filled Hours with Anna

I had a blast with Anna yesterday! When she pulled up, I was outside chatting with Lou and weeding the flower beds. (Wednesday's Decadron made it impossible to just sit quietly on the porch; also made it impossible to sleep at all Wednesday night.)

Do you know that I tried to talk Anna out of staying with me all day? No one had ever sat with me through chemo before. I had been a little worried about what it would be like to have someone there that I might potentially have to entertain for many hours, but that was silly. We entertained each other talking about everything under the sun. A gossip magazine devoted to Michael Jackson kept us busy for a loooong time! Plus, for long periods we quietly did our own thing (I was making huge mistakes with Tetris and could not get a good score, so I switched back to reading a charming old Betty Neels romance first published in 1977). I tried not to take advantage of having Anna there, but gosh it was awesome to have someone to go get me a soda!

But the really amazing thing that happened when we were leaving the Duke Food Court with our takeout lunches. Anna saw an old friend Eve and her husband sitting at a table eating an early lunch. Anna had been trying to find this old friend for long time and had searched the phone book as recently as a few weeks earlier with no luck. And here she was! Eve and Anna had a super but quick reunion with lots of hugs. They exchanged contact info. It was as if God had planned the whole thing, and my chemo was just an easy way to get these ladies to cross paths. Cool.

The chemo went really well, even though this was the "tough" day with both the easy chemo and the hard chemo. This time, I was in the back of the big room treatment room. Instead of watching the drama at the nurse's station, I got to surveil the cool curtained-off rooms with beds all along the back wall. You get a bed and privacy curtain and a Jack-and-Jill bathroom if you have chemo that takes a long time.

Nurse Jamie took care of me and showed me that I have a call button on my TV remote so that I could call her at any time. Well! If I had know about that, I would not have been stuck for 12 minutes last week after the final bag emptied. Oh, I am relieved to report that Nurse Ellen stopped by to say hello, and I had the opportunity to apologize for getting upset last week over that 12 minute wait.

We left Duke at 4:25PM and flew home in light traffic. I was thrilled to give Anna a tour of the house (whew, it was clean), then Lou and I had dinner, and he left for poker night. I made a quick fresh fruit run to Harris Teeter. I wanted watermelon, but saw that cherries are drastically on sale at $1.97 lb with my Harris Teeter discount card. Yum! Reminders of living in Washington State!

I was in bed by 8:30PM and slept soundly till 3:30AM. (Did not wake up when Lou got home after poker, so I can't report whether he won or lost.) Seven hours of sleep, pretty good. I feel great and plan to get to work in time for the 8:00AM staff meeting (so early so that our international coworker can join in). By 2:00PM I need to be back at Duke for the Neulasta shot, which will boost my bone marrow and elevate my blood counts and give me bone pain.

Hardly Any Side Effects in the First Week

When I visited Duke yesterday for my second dose of chemo, I was happy to report to Dr. Reidel that my first week was pretty much a breeze.

Sure, the 10mg intravenous Decadron made me chatty last Friday, but that was unpleasant only for the people around me ;^) because I had a nice time with it.

On Monday my ribs ached intensely until I took three Advil, and I was exhausted for about an hour -- so I switched tasks at work to something a little less difficult. On Tuesday my ribs ached again but much less, more like a friendly reminder that I have ribs and that they had ached yesterday and wasn't I lucky that they weren't really aching any more.

The real challenge came on Wednesday when I had to take 20mg Decadron by pill in the AM and again in the PM. In retrospect, I did it all wrong and paid the piper. First, at 6:00AM, I swallowed the first 20mg with my usual giant mug of caffeinated tea (two teabugs) and then when I got to work at 7:45AM, force of habit had me get one cup of regular coffee... and so at about 8:45AM when the Decadron hit, it hit with full force. I was jumpy and restless and chatty and my mind was racing. I took the elevator down to the cafeteria and then decided to run up the stairs to the fifth floor instead of taking the elevator; I gained the fourth floor before having to stop to catch my breath (maybe this is a good side benefit!). Plus I was way too talkative in April's 10:20 staff meeting!

So what did I learn? This morning, in about an hour, I have to take 20mg Decadron again. No tea! No coffee! Plan to think calming thoughts! But maybe I will also hit the stairs at some point this morning.

Saturday, July 4, 2009

Super Chatty on Friday

Decadron makes me speedy and hungry and chatty. Poor Lou, having to put up with me talking a mile a minute. But there is no way to get the chemo without getting the Decadron. So we are all stuck with the side effects.

Decadon is given intravenously on both week one and week two. But on week two I also have to take it in pill form at home for a day before and a couple days after the chemo. Nurse Ellen told me a cautionary tale about a lady patient who secretly did not take her Decadron pills because it increased her appetite, and she blew up with extreme fluid retention instead and they were struggling to get the fluid retention under control when she finally admitted that she wasn't following directions. (Call me cynical but the story just seemed like something loosely based on a true story that the nurses tell everyone to scare them into compliance. But I am already pretty compliant and do not need any more scaring.)

Other than chattiness and a red face, I have been totally fine!

Yesterday I ironed for hours and finally cleaned up the mountainous backlog of clean wrinkled clothes. I had the ironing board set up in the living room while we watched both Star Trek Insurrection and Star Trek Nemesis. We were not total slugs though: we also walked Samantha twice.

Today the plan is to get out of the house. Headed to Darlene's at 2:00 to hang out by the pool and hear about Charlie's new job and then Jeff's at 6:00 for a cookout and fireworks... unless I run out of steam.

Happy Fourth of July!

Friday, July 3, 2009

First Chemo Treatment Went Well

I was sitting on the front porch doing bills when Terri pulled up to drive me to the Duke Clinics. Terri set the bar pretty high! She arrived early and had a cup of coffee waiting for me. She convinced me to get tickets for the Jersey Boys musical, which is something Lou and I had been debating. And we generally just had a great time on our way to Durham.

I got to the Duke Clinics at 8:15AM, so I checked in for my 9:00AM appointment at 8:20AM and settled in for a long wait. I emptied my Lands End totebag, which I had randomly stuffed with stuff I might need (Tetris game, two books, calendar, lunch granola bar, drinks, Family Medical Leave Act paperwork, rosary beads, ginger chews from Heidi, pens, notepaper, cell phone, etc.) and as soon as it was all spread out on the chair next to me, they called my name. So I jammed everything back inside in a worse jumble than before and ran in to have my port "accessed" and blood drawn for labwork.

After that, I was still an hour early for Dr Reidel, but the nurses said he isn't a stickler for appointment times and they put me in a room to wait for him. I had time to organize my totebag and start playing Tetris, but it wasn't too long a wait. First I met an assistant and then Dr Reidel. The only news is that we aren't going to take a peek after six weeks of chemo because it might be too soon, but after nine weeks. Cool with me. I would rather not peek too early, get the wrong idea, and quit Gem/Tax prematurely.

Then I wandered around the building for about 30 minutes, got a muffin, phoned Lou, and then checked in early at the Treatment Room for the chemo. They gave me a pager (as if I were at a Red Robin restaurant) and I wandered around a little more. I was called pretty quickly and was seated in a chair for treatment at 11:15AM. Ellen was my nurse. There were some pre-meds and then the actual chemo started just before noon, so we knew I would be done around 1:35PM so I sent email to Meredyth at work to say I would pop out the front door at 1:45AM.

The Treatment Room at Duke is much bigger than the one I was in an UNC two years ago. It was both disconcerting to be in such a big room, but also entertaining. The way they have chairs, cabinets, and equipment arranged, you can't see everyone at one. But there's a steady hum of conversation and lots of beeping and lots of people walking around. I could see only three other people getting treatment, but I was also near the Nurses Station where all the action is. At one point one nurse was very upset that some unknown nurse had taken the goggles out of some kit without leaving a note...

Plus I finally picked up seven voicemail messages and checked my email on my phone.

The pharmacist visited me, gave me a calendar, and talked about Gem and Tax. She set my mind at ease about why I would not be getting Benedryl next week. The type of Tax I got last time was dissolved in a solution that caused a lot of people to have an allergic reaction, so the Benedryl was for the solution not the Tax! The Tax I am getting now is not dissolved in such a solution. I guess they have made progress in two years! Plus she also explained that now the Gem is administered over 90 minutes (instead of 30) because it gets better results -- but it also has a worse impact on white and red blood cell counts. So this time I really will need the Neulasta shot, which I get next Friday and which boosts the bone marrow to produce more of everything (and causes bone pain which is something to look forward to).

Nurse Ellen was great, but she was busy. When I was all done, my machine started beeping and a technician turned it off but did not inform Ellen. So 12 minutes went by, with me anxiously watching the clock and worrying about Meredyth waiting for me, till I saw Ellen and peevishly informed her that I was done. She took care of me immediately and sent me on my way, which was great. (I'll have to apologize to her next time I see her.)

I popped out of the front doors at 1:40PM and there was Meredyth waiting for me. We had a nice ride back and actually spent some time talking about WORK.

When I got home I got a big hug from Lou and we decided that since I felt fine, we needed to run a couple of errands. Good thing, because as we were nearing the end of the errands, I got pretty tired.

I slept great last night but woke up at 4:00AM this morning, which is probably a side effect of the Decadron they gave me yesterday. Grrrr Decadron! But 4:00AM is not bad. I tried to fall back to sleep but gave up at 4:45AM and figured I could come post.

I am not sure what is happening today. It's a holiday!

Thursday, July 2, 2009

Terri and Meredyth

So chemo starts today!

Terri is picking me up at 7:30AM so that no matter what kind of traffic we run into (I hope not literally run into) she'll deliver me to the Duke Clinics on time for the 9:00AM appointment. That means Terri has to leave her house before 7:00AM. She's a saint!

Then Meredyth will wait around at work for my call. Work is about 25 minutes from the Duke Clinics. When I know what time they'll be done with me, I'll call Meredyth to let her know and she'll come rescue me. Meredyth is a saint too.

Thanks so much to everyone who volunteered to drive me. I have next Thursday all set. Anna is going to bring me, hang out for about seven hours, and then bring me home. I'm not sure if that makes her a saint or just crazy ;^)

So here is the schedule today:

9:00AM bloodwork
10:00AM see Dr Reidel
11:30AM chemo starts

I am a little nervous! This chemo was not all that bad in 2007, but a lot has changed (I am so much older!) and they use different pre-meds and so I am nervous. Sort of like how I used to worry that there was a serial killer living in the woods behind the house in Woodinville... okay, maybe being nervous today is not quite as irrational at that.

Thanks also to everyone who sent gingerbread recipes! I have not baked yet but plan to. Super special thanks to Fran and Nancy and Mama Jo who recognize that maybe I am not a baker:

  • My Aunt Fran in Massachusetts sent a gingerbread that was like a heavenly gingery cake, with chunks of crystallized ginger baked right in. Lou and I fell upon it as if we were starving wolves...
  • Yesterday I came home to a batch of ginger cookies sent from Washington from Nancy and Mama Jo. This time, I guarded the cookies and Lou and I only had one each. Although, I will be out of the house today for about five hours and he might find where I hid them, because he is pretty sneaky.
Lou just yelled that breakfast is ready so gotta go. Plan to update ya later!