Tuesday, September 29, 2009

Balancing Act

There is a pink spiral calendar notebook that lives on the kitchen table. It's where I keep track of my side effects and solutions and appointments and drugs.

It's really helpful, mostly because the process of writing down a symptom and solution makes it so much easier to remember what to do the next time that same symptom shows up.

And some of the side effects snuck up on me -- I didn't realize what they were till I looked at the notebook and saw the pattern.

Lately I have been wondering about the impact of expecting certain side effects to occur. I am not afraid that I can make them happen -- it is more like, I do not want to waste any time worrying about side effects that could happen again.

Yet, there is some value in planning ahead. It is a sort of balancing act, trying to be ready without worrying.

Here is what I mean. Last time I got Super Chemo, a few days passed and then I had two migraines and flu-like symptoms and spent 2.5 days in bed. That was my worst week yet. (The great thing is, my "worst week" was not that bad! I feel pretty lucky that chemo has not been very difficult at all and yet is killing the cancer. Thank God!)

Anyway, this Thursday, I am getting Super Chemo again. So, next Monday through Wednesday, I might feel lousy again. I have noticed that I am not agreeing to do anything extra (important meetings at work, dinner plans with friends) on those particular days.

I think it is smart to be ready in case those days are not good.

I just don't want to worry about it from now till then.

So if I catch myself worrying, I will just remind myself about my Significant Shrinkage and let myself be flooded with the inevitable JOY and RESOLVE that comes every time I visualize the tumors shrinking and smoking and whimpering under the onslaught of the chemo.

I am reminded of: "Hope for the best, plan for the worst, and expect nothing."

Friday, September 25, 2009

Low Red Blood Cell Count

Nurse Amy, whom I think is awesome, was my nurse yesterday.

I got Easy Chemo as planned, but in addition I also got an Aranesp injection to boost my red blood cell (hemoglobin) count. My HGB was 9.8 when it should be 12 to 15.5. When Nurse Amy came over with the injection, I thought she was trying to give me the Neulasta injection, which should not happen till next Friday. She explained that we need to boost my red blood cell count. She also gave me a printout of my lab results, which was super cool not that I know how to interpret the 30+ things on the printout.

Aranesp comes with a pretty nice handout. Nurse Amy also talked about how I ought to be eating things that will boost my iron. So on the way home I stopped at a Harris Teeter and got liver. I really like liver!

I have seen Dr Reidel eleven times. One time was when we met for my "second opinion" to review my case and switch me over to Duke. Ten times were for chemo; and eight of those times, I first got a nice long satisfying chat with some random oncology resident who was assisting him. These residents asked a million questions and recorded my answers and all my side effects and passed along the high points to the doctor. (I never realized till now how satisfying it is when someone writes down everything you say!) I know either they or he filtered my info because Dr Reidel would later come in and focus on the important one every week.

The last two visits, however, there has been no resident to chat with. I really miss that! And Dr Reidel does not want to chat. He asks for what's most pressing. As he left the exam room yesterday, I felt vaguely disappointed and unfulfilled. It wasn't till much later that I realized how much I miss his parade of residents.

Ho, but later on, I got plenty of chatting! (People always say be careful what you wish for.) In the treatment room, I sat next to a lovely couple (Chris and Eva ) and chatted with them almost the entire time I was there. He was a "biological" patient -- not a chemo patient -- and she was crocheting and keeping him company. They live like three miles from me!  They sure helped make the time fly by.

Usually, my neighbors in the treatment room simply nod a friendly hello and then ignore me for the rest of the time. That is okay, too, because I bring a book, and my rosary, and my Tetris and just totally entertain myself.

Sunday, September 20, 2009

Go Take a Walk

One of the handouts from Duke says if you are feeling really tired, the best thing to do is to get some exercise every day, and you will start to feel better.

So, for the last five days, I have made myself take at least a short walk with Samantha the Golden Retriever. My house is at the bottom of a hill where two roads sort of dead end into each other, so there is this perfect short walk where I go up the hill, across a flat top part, and then back down the hill to my house in one loop. It's just one block, but it is perfect.

I sort of have to drag myself up the hill. My legs are so tired, right from the start. It wasn't like this before chemo. I liked walking up the hill fast.

It's an interesting walk because there are two houses under construction, and that is fun to watch. Although, they have both progressed to the point where most of the outside seems to be done and the interesting work is all going on unseen inside.

There are still a lot of empty lots for sale in the neighborhood. Those lots are all overgrown and fascinating to Samantha. So we both have a good time. Plus, if Sam poops in a wild lot, I don't have to pick it up.

Plus, my neighbors are all really nice. A couple of weeks ago, I came home with a huge bag of tomatoes. Awesome.

Today Lou took Samantha for the short one-block loop, then dropped her off at the house and then we went for a longer walk up by the driving range and the tennis courts and pool. The pool closes after today, I think. We still have never gone swimming there. Next summer for sure.

We had to stop a lot during the walk either because I was tired or out of breath. At one point, Lou suggested that I STOP TALKING because we were halfway up a huge hill, I was gasping for breath, and I was only halfway through some story about work.

Thursday, September 17, 2009

Migraine Experiment Continues

Since 2004, I had had maybe four to six migraines per year. They are not that bad, lots of sparkly lights, bad headache, difficulty speaking for about an hour, waste of a day. From what I have heard, that is not too bad.

But during chemo, yikes! That number has jumped. (I have gotten a migraine on both of the last two days.) So my primary care physician gave me a selection of migraine drug samples to see whether we could find one where I can stay upright and functional instead of having to go to sleep.

All of these drugs work different for different people, so the point is to find one that works for me.

Excedrin Migraine: This is what I have always taken at the first sign of blank spots. I basically rush home and go to sleep for a few hours to escape the pain, but then I am okay.

Treximet: I remember that I was not really impressed; it did not seem to be any better than Excedrin. I definitely went to sleep, but I am not sure if I tried to stay awake. Might be a good idea to try Treximet once more and take notes.

Relpax: Got rid of the sparkly lights very fast, but about 45 minutes into the headache, my head HURT a lot and I was actually nauseated. (Months of chemo, and it takes this migraine to nauseate me!) Almost exactly two hours into the headache, the sparkly lights came back. So I ended up in bed after all.

Frova: The sparkly lights lasted an extra long time and made it impossible to see anything. I never could have driven the car like that. However, for a few hours, I felt pretty good, minor headache only, able to watch TV. But five hours later, the entire headache came back. Sparkly lights followed by lots of pain. I took a second pill. I ended up in bed to escape the pain. Then later I was groggy. 

Immitrex: The sparkly lights were very short lived. The headache pain was moderate. I could not read. It was best if I went to sleep. I could not have stayed at work through the migraine.

Maxalt: The sparkly lights lasted for the usual 20 minutes, but then no headache followed! I was almost perectly fine. I had a MINOR headache (more like a hint of a headache). I definitely could have stayed at work! Fantastic! No wonder this stuff is so expensive. (Updated June 2010)

Monday, September 14, 2009

Cars from All Over

Because I got the Super Chemo on Friday, today I had to run up to Duke for my Neulasta shot.

Whenever I pull into the parking garage there, I am surprised at the license plates on the other cars: Massachusetts, California, Virginia, West Virginia, Georgia, I forget the rest. Duke is an amazing place and people come from all over to get care there. I feel so glad that I switched over. I have these peace of mind that I am in the right place, being part of the Bone and Soft Tissue Sarcoma Center.

I mentioned to today's nurse that last time around, the syringe got dropped, and she laughed and said that they gave that other nurse such a hard time for a week afterward! Nothing got dropped today. But no tickling and no pinching, either. It didn't sting till she pulled it out though. Strange.

I should be washing my wig tonight but I am just not really up to the effort tonight. If you see me tomorrow, try not to notice the messy hair.

I haven't mentioned it, but I have been enjoying reading The Age of Wonder. I am in the middle of the chapter about how balloonists got started in the mid 1700s in France with paper or silk balloons filled with hot air or hydrogen. Everyone was so excited about it, but the English were skeptical and called it the French Folly. Benjamin Franklin worried that there might be military applications, so that troops could float over and drop down on the enemy or view their encampments... so interesting.

Today I had my last dose of Decadron, so I am hoping for a deep uninterrupted sleep tonight and the thrill of a real cup of tea tomorrow morning.

Rosary update: I have completed one novena to thank Mary for my significant shrinkage, and I am a couple days into one to thank St. Jude. After that, it is St. Peregrine's turn and then I will be complete.

Friday, September 11, 2009

Nothing to Worry About

Yesterday when I saw Dr Reidel, I asked about the other medical conditions that were "noted" in the preliminary report from the CT Scan. I had googled each one, and to me they sound awful. I admit that I have kept these other things to myself all week because I wanted us all to bask in the golden glow of Significant Shrinkage. Didn't want anything to tarnish that joyous news.

I'll tall you right up front that Dr Reidel says that I have nothing to worry about for any of these medical conditions. I'm just posting them here for full disclosure ;^)

Here are the other medical conditions noted in the preliminary report:

  • Small pericardial effusion (a very little bit of fluid collecting around the heart)

  • Diffuse hepatic steatosis (fatty liver)

  • Postoperative changes of ventral hernia repair (what's up with my incisional hernia repair?)

But the doctor said those are "nothing to worry about." Basically, when they review the scan, they have to note everything they see but do not include any kind of value judgement or attempt to put it into context (like, "This is expected during chemo" or "Whoa Nelly what the heck is that doing there?!") I'm cool with that. [Patsy, are you cool with that?]

Plus I have had hip pain in my right hip for like two weeks. (I had hip pain in my left hip for months and did not even think to mention it and lo it was a tumor in my psoas muscle! So now I mention everything that hurts or twinges.) But when Dr Reidel checked the final report from the CT Scan, there is nothing happening there. He suggested that it might be "referred pain" from the arthritic changes in my back. The hot tub does make the right hip pain go away.

Wednesday, September 9, 2009

Vitamin D Deficiency

This spring, everyone in my vanpool was talking about being tested for Vitamin D deficiency. Nobody spends any time out in the sun anymore, and when we do, we are all slathered up with sunblock, so people just aren't producing Vitamin D the way they used to...

The vanpoolers who were deficient said how great they felt after they started taking Vitamin D. Mostly they felt energized and cheerful. Who doesn't want to feel more energized and cheerful? Especially during chemo!

So in mid-August when I went to my primary care physician for migraine drugs and antibiotics for my head, I also asked if he would test me for Vitamin D Deficiency. The doctor and nurse both chuckled and said that practically everyone who comes in wants to be tested for that. It is the new popular health issue to worry about. The doctor said he would be happy to test me, but that most people who ask end up not having a deficiency. I guess if you are actually deficient, you show up complaining about the symptoms, and the doctor suggests that you get tested for this deficiency.

Well, turns out I am deficient. The results showed me scoring like a 16.8 when the normal range is 32 to 100. So I got a prescription for 50,000 IU of Vitamin D to be taken weekly for 12 weeks. When I filled the prescription, the bottle contained six pills, which seemed so strange to the clerk and I that we checked with the pharmacist. Six pills was correct because this is something you take once a week.

I have been taking it for five weeks now. I know this because I was filling up my pill box and saw that I need to refill the prescription.

That started me wondering whether I feel more energized & cheerful. Ten weeks into the chemo, I would have to say I have less energy than before chemo started ;^) Probably, I would be even less energized & cheerful than I am today if I were not taking it.

I am naturally pretty cheerful and upbeat anyway. If I got any more cheerful, you might start to wonder if it were artificially induced. But it isn't. Unless you count chocolate.

Thursday, September 3, 2009

Significant Shrinkage!

Let's all do the happy dance!

The preliminary report on today's CT Scan shows "significant shrinkage" in the tumors, which is absolutely the best news that I could have hoped for (short of a miraculous total disappearance of the cancer but let's not get greedy!)

Here are some details from the preliminary report:

  • There are no new nodules in the lungs!

  • The 1.3cm lung nodule shrank to 0.9cm.

  • The 0.9cm lung nodule shrank to .5 cm.

  • The 6mm lung nodule shrank to 2mm. (There are six nodules but they only measured three representative ones.)

  • The mysterious 4cm x 4cm "solid mass" in the pancreas shrank to 3.0cm x 2.5cm!

  • The 4cm tumor in the psoas muscle did NOT shrink. It stayed the same. I am thinking it is so messed up from the Cyber Knife radiation that even this fabulous chemo cannot make it shrink. Oooh, and there are NO new bony abnormalities where the tumor is eating into L4.

Yahoo! Such fabulous news! So we stay the course. I do three more cycles of Gem/Tax, which will take nine weeks. Then we do another scan.

Knowing that there has been significant shrinkage makes it so much easier to get the chemo and laugh at the side effects!

Thanks everyone for all your prayers and good thoughts and comments and email.

I said the rosary every day for the last 15 days asking for help. I also prayed to St. Jude, the patron saint for lost causes, and St. Peregrine, the patron saint for cancer survivors. And of course today I started a novena to thank Jesus and Mary for their help.

Sushi tomorrow night!

Today is Scan Day!

Here is the plan:

7:00AM Karen and Lou leave the house
8:30AM Labwork
9:30AM CT Scan with contrast
10:40AM See Dr Reidel, get results
12:30PM Chemo

Check back later for the results.


Wednesday 9-30-09: I'm taking Decadron today in preparation for Super Chemo tomorrow. I slept 8.5 hours and feel fine this morning.

Tuesday 9-29-09: Today it will be a beautiful Fall day in the low 70s. My sore throat is gone! I wonder how my red blood cell count is doing?

Monday 9-28-09: From the head cold: still have a sore throat but feel less miserable than yesterday. From the chemo: the bones in my shoulders and upper back hurt.

Sunday 9-27-09: Miserable head cold.

Saturday 9-26-09: Went for a 2 mile walk this morning! Had to stop and rest a lot, but it was a great walk. Feeling good today.  Off to the grocery store and coffee shop now...

Friday 9-25-09: Wide awake after seven solid hours of sleep. Sore throat again. Took an Airborne fizzy pill this morning.

Thursday 9-24-09: Woke up with some kind of cold! Sore throat, stuffed up, blah. But today is Easy Chemo Day and I am going to Duke to kill some cancer cells even if I have to bring a box of tissues with me. Oooh maybe they are going to make me wear a mask!

Wednesday 9-23-09: Maybe 8 hours of sleep is not enough! Feel kind of achy with upset stomach this morning. But I am ironing my khakis and headed for the vanpool.

Monday 9-21-09: Plan to take the vanpool today, so I am up early. Feel pretty good, considering that it is 5:40AM on a Monday.

Sunday 9-20-09: Feel good again today. Went for a long walk with Lou. Had to stop often to rest, but it was an awesome walk.

Saturday 9-19-09: Feel good again today.

Friday 9-18-09: Woke up feeling totally fine. Yahoo!

Thursday 9-17-09: Still have flu-like symptoms but no migraine yet!
Hope to work from home today.

Wednesday 9-16-09: Evening Update: It is just after 5:00PM and I am finally feeling almost human. I go another migraine this morning! And another day of flu-like symptoms. If we stick to the pattern, I can expect a happy healthy day tomorrow though.

Tuesday 9-15-09 Afternoon Update: Gosh, around 8:00AM my day went to hell! Got a migraine right after I left for the car dealership. I am still trying a variety of migraine drugs, so this time it was Relpax. Took it in the car and foolishly kept going; not such a great plan. Got rid of the sparkly lights pretty quick, but left me with a terrible headache, worst yet. I successfully got the car serviced. Finally got home and went to sleep from about 11:00Am to 1:30PM. Woke up with migraine gone but replaced with achy exhausted flu-like chemo side effects. I decided to spend the day in bed. So tired I can't sleep or read or watch TV. Pathetic! But thank God no barfing! ;^)

Tuesday 9-15-09: Woke up at 3:30AM! Feel pretty darned good however. Worked for three hours, which is nice.

Monday 9-14-09 Evening: Tired today, with one numb foot -- and aren't those lovely side effects?! I feel so lucky. Based on the previous cycle, Tuesday and Wednesday of this week might be tougher. Tonight I had a Healing Touch appointment with Amelia and left feeling FABULOUS.

Sunday 9-13-09: Feel fine so far but going to try to take it easy today. I do want to accomplish two things: grocery shop this morning, and go to dinner with a big group from the neighborhood tonight.

Saturday 9-12-09 Late Morning: Had a busy day planned today, but we have already had to cancel the BBQ lunch & live music at Big Boss with Woody and Meredyth because I am too tired. Still planning to visit the lovely couple who lease our old house.

Saturday 9-12-09 Early morning: Jumped in the hot tub this morning and enjoyed the 101 degree heat and blue skies overhead. Busy day planned today. Visiting the lovely couple who lease our old house, maybe meeting a new baby in the old neighborhood, than heading out to Big Boss for BBQ lunch & live music with Woody and Meredyth. Tonight I'll go for pizza with my pals in Holly Springs. Feeling good! But ready to bail out of our plans if I start to feel wonky...

Friday 9-11-09: I cannot write that date without feeling sad about what happened but proud that we have thwarted further attacks within our borders. I get Super Chemo today instead of yesterday because the Monday holiday threw off the regular schedule. Let's kill more cancer cells today! Decadron woke me up at 4:30AM filled with energy. I saw that Lou had slipped away to the guest room to escape my snoring. That made me feel bad so I went to the Harris Teeter at 5:00AM to pick up smoked salmon to go on the poor guy's bagel for breakfast today. [I tell you the good things I do for him but hardly ever mention how I drive him insane.] I am having SUSHI LUNCH with the fabulous Deborah A !!! Sushi alone is a thrill, but sushi and time to chat with Deborah is a super thrill. I'll tell ya, I am a lucky lucky woman.

Thursday 9-10-09 Evening: I was super busy with urgent deadlines from 9:00 to 1:00 at work, which I perversely enjoy. Then I headed to Duke for my regular labwork and doctor appointment which occurs before chemo. (Super Chemo tomorrow.) I crashed at 3:00PM and struggled to stay awake in the waiting room because I was afraid I would miss my name being called. Once I got into the exam room, I stretched out on the exam table for a nap and was just about to drop off when Dr R arrived. All is well! Planning to crawl into bed at 7PM tonight when Lou leaves for poker with the guys.

Wednesday 09-09-09 Night: I got a flu shot this morning and got to work pretty late, feeling tired and cranky. But I got my second wind after lunch, started feeling wonderful, and worked till 8:00PM. What an awesome day!

Wednesday 09-09-09 Morning: INTERESTING DATE TODAY! I woke up dreaming I was Kevin Costner's character with the webbed feet in Waterworld. My feet were stinging and burning. (I really disliked that movie.) Slept late (till 7:30AM) in the hope that I will not crash at 3:00PM again. I have an important meeting at 3:30PM that I need to be able to think during ;^)

Tuesday 9-8-09 Evening: I crashed at 3:00PM, left the office at 4:00PM, and then slept till about 6:30PM and now feel just fine. I woke up just in time for a wonderful chicken dinner from Carol and Linda, including a fresh peach tart that blew us away. Then we went for a walk and finally met our newest neighbors up the street.

Monday 9-7-09: Happy Labor Day! I am shocked that it is Labor Day already. What happened to my summer?! Oh yeah, I was busy getting radiation and chemo. April seems like a million years ago. So much has happened since Chemo Nurse Ann called and said, "There is a spot on your x-ray they are not happy with." But we have had some fun this summer. We took trips to both Charleston, SC, and to Kitty Hawk, NC.

Sunday 9-6-09: Slept till almost 9:00AM! Feeling pretty good. Bottoms of my feet are numb. Went for a short walk with Lou and Sam. Planning to go to the Bavarian Brathaus this evening with John and Pat. Still feeling so lucky and happy and relieved at the good news.

Saturday 9-5-09: Got up at 8:00AM and found Lou in the hot tub. What a great way to start the day. Lots of golfers out early today. At one point there were four golf carts piled up at the 5th tee. Went for a short walk with Lou and Sam, dropped off Sam, and then walked out to the front gate of the neighborhood. Got to do something to combat the weight gain from Decadron. I have put on 10 pounds in 10 weeks of chemo. Darn. But who can complain since it is working so good! :^)

Friday 9-4-09: Wow, slept great, feel great, nothing more therapeutic than fabulous news. I must not have been snoring because Lou did not slip away to the guest room in the middle of the night to escape the racket. Yesterday we were trapped at Duke because waiting for both the CT Scan and the Dr R appointment took forever, so we had to cancel our generous dinner delivery from our neighbors Carol and Linda because we did not think we would be home in time and we did not want to be worrying about them all afternoon. Last night I had some bathroom trouble but caught it early and feel fine today. I have not ironed in like two weeks and thus have nothing to wear to work. Lou is taking today as a vacation day.

Thursday 9-3-09 evening: SCAN SHOWS SIGNIFICANT SHRINKAGE! Later tonight I will post more details. Thanks everyone for your prayers and good thoughts!

Thursday 9-3-09 morning: Happy Birthday Mom! I have the best mother in the world, and today is her special day. I just hope her present arrives in the mail today.