Tuesday, June 29, 2010

Big Blue Pills

On Saturday, I noticed a sprinkling of delicate red bumps at my newly shaved temples. I knew immediately what it would turn into: a painful infected mess of a rash covering my face and scalp. I've had this rash a couple of times now, and it is from the chemo.

In the past, I waited to talk to my doctor till the rash was just unbearable. This time I wanted to see if I could stop it before it got too bad. Why be miserable if I can avoid it. Also in the past, Dr R was hesitant to prescribe antibiotics -- he got me to dab my head with cortizone cream instead (which helps, but slowly and messily). However, my primary care physician Dr S did not hesitate to give me antibiotics when he saw this rash last summer. I decided if Dr R gave me any flack, I would go see Dr S instead.

I called my nurse at Duke on Monday morning and asked for antibiotics. No problem, they called in a funky antibiotic prescription for me immediately. I have to take a big blue pill every six hours for the next seven days, and I cannot lie down for at least ten minutes after taking each pill. Oh, and the insert has a frightening description of some kind of rare diarrhea that can actually kill you.

I took the first pill at 7:00PM, went to bed at 9:00PM, and set my alarm for 1:00AM. I was really disorientated at 1:00AM when the alarm went off. I managed to take the second pill and then just stood in the kitchen for ten minutes wondering what happens to you if you lie down too soon. Meanwhile, my alarm starting going off again in the bedroom because I had hit snooze instead of turning it off. (Lou was thrilled at being woken up twice.) I reset the alarm to go off at 7:00AM for the third pill, but by then I was so anxious, I kept waking myself up the rest of the night!

I am exhausted. There is no way I am taking this pill every six hours tonight. I'll do the best I can, maybe aim for eight hours overnight.

As a result of the completely disrupted sleep and the chemo, I had a very very bad morning. I started driving to work, realized I could not make it, and headed home. Then we lost power! I ended up back in bed, which helped, because now I am okay again.

Power is back on, which is good, because I don't want to know how hot it can get with no air conditioning.

My new favorite beverage! Thanks to Bonnie at work for lending me a bottle opener yesterday.

Sunday, June 27, 2010

Saturday Exhaustion

Saturday morning started off great when I woke up happy and energetic. We all went to the new Brigs for a fantastic breakfast. Patsy got ginormous pancakes and shared them with everyone.

Then we ran some errands at Michaels and Dicks, but then I totally crashed. I was suddenly completely exhausted. I asked Omer if he could drive us home. I went to bed, but was so tired, I could not fall asleep. I just lay there for a long time resting. I felt somewhat better when I finally got up, but I was basically exhausted for most of the day.

I perked up in the evening. We took this picture after dinner.

This morning, I feel great again. I slept well but had elaborate exhausting dreams.

We had a fun breakfast; I made salmon bagels for everyone but Patsy. I am so glad that my parents came out to help! Having them here was a huge help, and a huge comfort. Plus a lot of laughs.

After sending Patsy and Omer off on their journey home, Lou and I walked the 2 mile loop to the gate. I have just come back from grocery shopping all alone -- I have not had to do that in a month! My plan today is to putter around the house, do some ironing, and go out to dinner tonight with a bunch of people in the neighborhood to celebrate Nick's birthday.

Friday, June 25, 2010

Much Better Than Last Time

Gosh, yesterday was much better than my first Thursday after Doxorubicin. I took the Decadron and Zofran on schedule, and had no nausea. (I did have a little nausea Friday night, but took a Compazine.)

I loined Lou and Sam for the short loop walk on Thursday morning; luckily I bumped into a neighbor headed out to the gate, so I left Lou and Sam on the short loop and took off on the longer loop. Poor old Sam is no longer interested in long walks. Four-tenths of a mile is pretty much her limit, but she would like to do it twice a day.

No caffeine for me at all yesterday, to try to keep the Decadron speediness under control. That might have contributed to my mild all-day headache.

It took me all day, but I worked a half day from home. I also went out to lunch with the gang (including John next door) and drove Lou to the Stock Building Supply to pick up the window sash they manufactured for us to replace our first window broken by a golfer. (Golf balls don't break windows. Golfers break windows.)

So to compare this dose of Doxorubicin to the first dose, this is much better. By now, last time, I was a complete zombie, still fighting to get the nausea under control (and I would not succeed till later today).

Oh, but I am bald now. But that is a relief after the massive shedding that occurred.

Thursday, June 24, 2010

Second Big Dose

Yesterday I got my second big dose (5 syringles) of Doxorubicin. Everything went well at Duke. Lou, Patsy, and Omer came along as planned.

The only disappointment was that I forgot to bring in a bag of novels that I had planned to abandon in the treatment waiting room. Ah, next time.

My hair has been falling out a lot in the last couple of days, till it looked sort of awful unless I was wearing a hat. So yeasterday afternoon I got my head shaved. At this point, my plan is to wear hats.

I took an Ambien last night, because otherwise I would have been awake all night once the Decadron kicked in. I am hoping to work from home today, do I needed to sleep.

I told my nurse yesterday what happened after the last dose, how not talking the Decadron pills really did not work out, and that I was very nauseated and it took multiple does of Compazine and Zofran to get the nausea under control. She suggested that in addition to the Decadron pills, I should also take the Zofran starting this morning. I should save the Compazine if I actually feel any nausea (the compazine is the one that makes me sleepy).

So that is the plan.

Monday, June 21, 2010

Shedding Season

The 15-day deadline came and went last Thursday without any of my hair falling out! I thought maybe I had dodged this bullet, maybe my hair said, "Not again. We are not falling out again."

But this weekend, I definitely saw some hair mixed in with the shampoo suds in the shower. Although, when my hair was dry, it looked exactly the same.

Last night, I woke up with my scalp hurting from the pressure of my head on the pillow. That happened in 2007 and 2009 before my hair started falling out.

I'm still hoping that maybe my hair will just thin out. I am not going to run out and get my head shaved. I'm going to wait and see what happens.

Hope for the best, plan for the worst, expect nothing. I don't know if this counts as planning for the worst, but Meredyth is knitting me a cap. We had fun on Friday going to a yarn shop, looking for a lightweight soft yarn. We got two yarns, a pink and a tan. One is silk and the other is linen. Meredyth is going to try a pattern that has a lot of air holes, because otherwise a knitted cap will just be too hot.

Sunday, June 20, 2010

Fourth Migraine in a Week

I had migraines on Saturday, Monday, Wednesday, and then Saturday again.

Last night, I had my fourth migraine of the week. It was already well under way when I noticed a small blob of sparkly lights in the middle of my vision. That means I missed about 15 minutes of light sensitivity and blank spots.

I took Maxalt immediately. The sparkly lights increased (as usual) and lingered for 20 minutes (as usual). When the sparkly lights go away, the actual head ACHE starts. But last night, no ache. Well, I had a teeny tiny headache. But that is it.

I did not have to go to bed! It's a miracle!

If this had happened at work, I could have sat quietly for 20 minutes till the sparkly lights ended and then gone right back to work.

So, I will definitely be filling this prescription today.

Friday, June 18, 2010

Ready, Set, Go

I am ready for my next migraine to strike. I am armed with Maxalt!

Yesterday, I decided it was crazy to wait almost a week to talk to Dr R about these migraines, so I called my primary care physician. He was on vacation, but I got an appointment with another provider that morning. In fact, I had 21 minutes to get there. I zoomed out of my office.

The appointment went well, and I ended up with two samples of Maxalt, plus a prescription in case the samples work. The nurse practicioner was most interested in determining whether these headaches were something new (requiring a CT Scan). But they are old familiar migraines, just happening more often.

Now it is just a waiting game.

Do I see sparkles?

No, that is the sunlight dancing off the silver tag on Samantha's collar...

Thursday, June 17, 2010


At 2:00PM yesterday, my day was interrupted by another migraine. This time I did not notice anything till the sparkly lights appeared. That is actually pretty far advanced, probably about 20 minutes into it where there are blind spots and a sensitivity to light. I guess I was so intent on my work that I just didn't notice the blind spots.

Nothing to do but take an Immitrex and go home.

Next Wednesday, when I go for Doxorubicin dose #2, I am going to ask Dr R for a prescription for the migraine drug that Tinalynne takes, Maxalt. It would be great if I could find something that allows me to keep functioning, instead of having to go home and go to bed.

And now for something compeltely different...

Today is the day my hair is scheduled to begin falling out (15 days after the first Doxorubicin treatment). But I just tugged on a few strands and nothing happened. (I know how silly that sounds.)

I will be very nervous when I shampoo my hair because last time it came out, that is how it started, with handfuls of soapy hair in the shower.

Tuesday, June 15, 2010

Time for Walkies

My house is exactly one mile from the gate at the back entrance into my neighborhood. So, if I walk to the gate and back, it is a two-mile walk with some serious hills.

I love this walk. There are no turns, so I can't get lost. I get to examine my neighbors yards, wave at the people driving by, and check out the prices on houses for sale. All the dogs are locked up, so there is nothing to worry about.

On Friday night, Patsy and I walked this route after our big sushi dinner. We saw a lot of fireflies in the bushes near the gate. I noticed that the door to a pickup truck in a driveway has been left ajar, so I knocked on the front door. A big strapping guy came to the front door and stood there looking at me through the glass storm door. When I realized he was not going to open the storm door (did he think I was a home invader?!) I said loudly that his truck door was open and left without waiting for a response. As we walked away, we saw him run out to the truck. Anyway, we hadn't told Lou and Omer what we were doing, and we had been gone for an hour, so as we finally reached the front porch, they popped out of the house with car keys. They were coming to look for us!

On Saturday morning, Lou and I walked a different two-mile route, to the neighborhood pool and back. We watched a few minutes of a kids swim meet, which was fun.

On Monday night, Lou and I walked to the gate and back after a turkey dinner. The temperature was finally starting to drop, and there was a nice breeze. Rain seemed likely, but we got there and back in 45 minutes without a raindrop falling on us.

It feels great to get out and walk.

Monday, June 14, 2010

More Migraines

I had a migraine late Saturday night, which actually wasn't all that bad because I immediately took Immitrex and went to bed and fell asleep. On Sunday, all I had was residual pain when I bent over.

But this morning, I felt great and rushed into work for a very cool class starting at 9:00AM.  I stopped in the ladies room before heading in to take my seat -- and I saw sparkles. Another migraine!  No. I was so disappointed because it would have been awesome to take the class. Darn darn darn.

I had Immitrex in my pocketbook and took a pill with handfuls of water from the sink in the bathroom. I stopped in the classroom to let the instructor know I had to go home, and now I am home. The sparklles are gone, and the headache pain is starting.

I just wanted to quickly post before I crawl into bed and (I hope) fall asleep.

I remember that I had like six migraines the first time that I started chemo, in 2007. And I had a bunch of migraines last year. For while I even had a counter "How Many Days Till Migraine?" on the blog in 2009.

Friday, June 11, 2010

The Worst Is Over

My bloodwork was all good, one week after the first dose of Doxorubicin.

Dr R called me late on Wednesday to let me know that all my numbers looked good. In the next week, my white blood cell counts count plummet, though, so i am supposed to watch out for any fevers. If I have a fever of 105 degrees, I am supposed to immediately go to the ER. (Like, where else would I go with a raging fever? Shopping? Rollerblading?)

Then he reiterated something that I thought he had said a month ago -- but that I did not dare to hope was true. He said that the first dose was the worst and that my body would sort of get used to the Doxorubicin so that none of the remaining does would be as hard to deal with as this first one.

That is awesome news, especially after Gem/Tax, where every dose got progressively harder to deal with.

Happy Dance!

Oooh, and it is FRIDAY today, so Weekend Happy Dance!

Tuesday, June 8, 2010

Wednesday Checkup

Tomorrow morning, I go to Duke to have my bloodwork checked and see Dr. R for a checkup one week after the chemo started. My plan is to go alone, so that I can go to work afterward.

This afternoon, Lou helped me compile a list of questions. It's not much of a list: two questions and one unpleasant side effect.

What is amazing to me is that I can have something like this unpleasant side effect, something that is bugging me minute to minute -- but when I get into the examination room, I just forget all about it.  "Completely fine," I'll say blithely. "Nothing to report."

So a list is a huge help.

Patsy and Omer are a huge help too!  We teased them today because they managed to get through the entire day without stopping in at the grocery store for something. (Every day I think things I must have, and they run out to get them. It is better than being on a cruise... in a suite... with a butler.) Lou waited till 9:00PM to point this out to them, so that it would be too late for them to go to Harris Teeter.

Hey, I did not go in to the office today. My plan was to go in to the office. Around 9:00AM, I got all dressed up and started driving to work, but felt lousy all of a sudden and turned around before I even got out of the neighborhood. I felt good enough to log in remotely and work from home and finally clean up some pesky issues. I did not take a nap today. I was exhausted at 9:00PM when Patsy and Omer went to bed, but once I went to bed, I woke right up. I am finally feeling sleepy after checking email and surfing the web for an hour. I hope when I crawl back under the covers, I fall right to sleep.

Wearing Flip Flops

For months I have been complaining about my swollen ankles and feet. Dr R says it's a side effect from the Docetaxel that might last as long as a year from my last dose (October '09). I have had to wear compression stockings and take a diuretic and only wear my sneakers to keep the swelling under control. Sandals and MaryJane shoes were completely out of the question because my feet would swell where ever there was an open space that let them swell.  Yuck.

But for the last few days, the swelling has been gone! Completely gone! I should have taken a photo of my skinny feetsies.

I even wondered if "lack of edema" was a known side effect of Doxorubicin that they had forgotten to mention in the handouts. But I didn't think about it a lot because I did not want to jinx it.

My feet and ankles were so un-swollen that I have been wearing flips flops since our lunch outing on Saturday.  Flip flops!  Not just any old lousy flip flops, either. Pale pink flip flops with a "secret" compartment built into the sole, just large enough to hide a credit card or a hotel key or a couple of folded dollar bills. These are party flip flops. Spring Break flip flops!

Well, last night, I felt a familiar and unwelcome sort of tightness in my feet and realized that there was a tiny bit of swelling.  Grrrr.

Then it hit me. I spent so much time in bed in the last week, probably 20 out of every 24 hours, that of course my ankles were not swelling. Being prone or elevating your feet is an excellent way to stop swelling. But after one day of working from home, a mere 7 hours of sitting at the table in front of my laptop, the swelling was coming back. Darn. Party's over.

Let's not be drastic. Party's not over. But a couple of people have started to look around for their coats and empty potluck dish, in preparation for saying good night.

I am hoping I can use this new knowledge to keep the swelling under control.

Sunday, June 6, 2010

No Nausea While You're Asleep

What a weekend.

At some point late on Friday, I guess I had accumulated enough Compazine and Zofran in my bloodstream to keep the nausea away for longer than an hour at a time! Actually, it got to the point where I only had brief periods of nausea. The trade off was that I was like completely comatose. I slept day and night, for most of the weekend. I would wake up briefly, eat or drink something, and then zonk out again.

Sleeping was a gift. Impossible to feel nauseated while asleep! Other than two quick outings, I have been in my PJs and/or asleep continuously since my last report on Friday morning.

The outings were lunch at a Mexican restaurant on Saturday (followed by a long nap) and Costco shopping this morning (followed by a longer nap).

I have not taken anything for nausea since midday today. I even helped make dinner tonight, which was a miracle, because for most of the weekend, when I was awake, I just sat around like a zombie letting Lou, Patsy, and Omer wait on me. I slept all afternoon, though. In a little while, I'll be going to bed, and I expect to fall right to sleep.

I'm going to NOT set my alarm in the morning. I plan to sleep as late as I can and then make the decision to either log in remotely or actually go into the office. If I am still sleeping too much, it would be silly to drive in to the office.

So, thanks for the nice messages!  It was a heck of a weekend, but I seem to have made it through to the other side.

Friday, June 4, 2010

Many Regrets

Oh what was I thinking, to turn down the Decadron that Dr R offered for the first three days after chemo?

I sure won't turn it down for the next dose of Doxorubicin, And I told him on the phone last night that I would never again complain about the sleeplessness and speediness from Decadron. I would give anthying for a little sleeplessness and speediness right now -- if I could only get rid of the nausea.

The nausea slapped me in the face yesterday at 5pm. I had wondered how it would start, if it would start. I expected it to tiptoe in quietly and grow slowly. But that is not what happened. One minute I was sitting there thinking maybe I ought to log on to work and check email, and the next minute I was ready to barf.

I immediately took a Compazine, and in a few minutes I was fine. But it didn't last long. After about an hour, the nausea was back. I held it at bay with ginger ale but realized I was fighting a losing battle, so I called Dr R. He suggested that I start take the Zofran, too, along with the Compazine. And he suggested taking them straight through for the next few days.

I can take a Compazine every 6 hours, and a Zofran every 8 hours. What I have noticed so far is that each pill gives me like one hour of feeling okay, but then there is nausea. But there has been no barfing, so that is a success.

I am in that okay hour right now which is how I can blog.

Thursday, June 3, 2010

Checking Email After Midnight

I ended up sleeping all afternoon Wednesday after chemo. I got up for homemade chicken soup and some TV, but then I was back in bed just after 8:30PM. I had a headache and was sleepy. I might have even been a tiny bit nauseated, but that is practically impossible on the first day, so I just ignored it until I fell asleep.

Around 1:00AM, the steroids must have finally kicked in, because I woke up and felt all jumpy and started worrying that maybe I had forgotten to tell my manager that I was starting chemo on Wednesday. I had to get out of bed or run the risk of waking up Lou with my fidgeting. So I came out to the dining room where my laptop is, sent email to my manager, started checking email, and decided to also update the blog.

I feel shaky and generally unwell. I am sneezing a lot, and I still have a headache. That is not too bad.

During chemo yesterday, a nurse came over to ask, "Did I drop your Neulasta shot?" Yes!  I did not recognize her at first because she is no longer very pregnant. (The baby is fine.) So I told her she was on my blog, and I gave this blog address to her.

Wednesday, June 2, 2010

Big Dose of Doxorubicin

Got a nice big dose of doxorubicin today! 164 mg

For sarcoma, my nurse explained, the dose is like 75 mg per meter squared. That's a big smack in the face for the sarcoma.  Whack!  The dose for sarcoma is more intense than, say, the dose for a typical breast cancer, which might be like 50 mg per meter squared. The "per meter squared" part is all about the surface area of the patient (height and weight).  So I really did get a big dose, big for the sarcoma and big for my surface area :^)

The chemo was administered in five separate syringes, and my nurse sat with me, injecting them one after the other through my beloved Power Port. It's a serious chemo, a bad one if there is a spill or leak, so they do it carefully and watch for trouble. It is not something you'd hang in a bag and walk away from.

Lou was in the treatment room and so now he knows my secret: that I have a lot of laughs getting chemo. The nurses in the treatment room are the best, and the mood is light. Sure, this is deadly serioous business, but come on, we can't sit there and cry the whole time. Lou said he would like to come for my next dose, too. What can I tell you, I have the best husband in the world.

I warned Lou not to tell anyone how much fun getting chemo is, or else I won't be able to get any chemo pity from anybody.

I made a decision today that I sure hope I do not come to regret. I declined to take a prescription of the Decadron, the steriod that stops inflammation and nausea, because it makes me too speedy. If I end up barfing, I will regret this decision -- and next time I will take the Decadron with no complaints about sleeplessness and the inability to stop talking and snacking.

Dr. R said to NOT take the Compazine prophylactically [gasp] and so that is the plan right now.  I have a compazine in my pocket, ready for the first hint of nausea. Almost no one gets nauseated on the first day, so it is sort of overkill to have a pill in my pocket. I am hoping it's like having an umbrella: if you have the umbrella with you, you won't need it. It only rains if you leave your umbrella at home.

I think that I am going to curl up on the couch and either nap or read my new book, Storm Prey, by John Sandford.  I'll report if anything happens...

Tuesday, June 1, 2010

Let's Kill Some Cancer Tomorrow

Chemo starts tomorrow, and everyone is coming: Lou, Patsy, Omer, and me. I am surprised Samantha hasn't asked if she can come, too, but maybe her plan is to grab her leash and sit by the door tomorrow.

It will probably take all morning for the labwork, seeing Dr Reidel, and then getting the chemo. We are thinking that we'll stop for a nice lunch somewhere on the way home.

I am supposed to be able to drive myself to and from this chemo, but it seemed like a good idea to have company for this first time with Doxorubicin.

My plan is to take compazine prophylactically afterward, so that no nausea occurs. (I have not heard yet what Dr Reidel's plan is.) I am going to ask for a prescription of Zophran, too, because I remember that drug being like the big gun for stopping any nausea immediately.

Thanks to Valerie for reminding me about Zophran.

I haven't posted anything all weekend because I have been waiting for some kind of insight into how I feel about tomorrow. (Plus, it has been a lot of fun having Patsy and Omer here.) I have heard a lot from ladies who had Doxorubicin, and so a lot of my fears are allayed. And I think I am in that place where I am thinking, it won't be easy or fun, but there is a good chance we're gonna kill some cancer. Nothing I like better than killing some cancer.

Tomorrow can't get here soon enough. Let's kill some cancer.