Last day of 2008

      Except for the economy and cancer, it was a good year for us. Baby Preview did well, my Dad had successful heart surgery, we won the sailboat race. I did a lot of singing, some dancing, gardening, reading, some writing. camping, and traveling. It was probably more enjoyable than 2009 will be. 

     I spent the last day of 2008 getting a hair cut, and getting ready for my parents to visit. My dear friend, Penny, came over to help me clean the guest room and bathrooms. Nothing lifts the spirits like clean bathrooms. Marty brought live lobsters and yellow tulips home from the market. We had a roaring fire in the woodstove to ofset the raging wind storm out side.

   Although I was tired all day, a nap revived me for New Year watch and I have to say that I feel normal. and it feels good

Happy New Year friends

The plot thickens 12-30

I woke up feeling good this morning. At least until the oncologist called. She only ever calls with bad news so the minute I hear her voice, life goes south. She had good news and curious news this morning. The good news is that my brain scan was clear of cancer (yea!). The Curious news is that the oncologist from Fox Chase called her and told her and that pathologists at Fox Chase aren't convinced that the cancer cells are small cell. My treatment has been based on this report which I got from the Reading Hospital. It is important because the treatments are really different. They want me to go have a lung biopsy now. (not yea)
They didn't get back to me today about when. Marty wants me to go to Fox Chase to have it done. He's lost confidence in the Reading Hospital. I guess we will see tomorrow who can schedule it first.
Talking to the oncologist requires throwing up and a nap (I may have to fire her), but after that the rest of the day went great. I did a little shopping, had an appointment with my counselor and bought pork and sauerkraut at the Farmer's Market. I even made dinner for Marty.
I'm pretty excited about getting a hair cut tomorrow.

Monday Dec. 29,2008

After feeling sick and depressed most of Sunday, I felt great on Monday. Maybe it was the singing. It was a bright sunny day. There was nothing that I had to do. I put a way Christmas gifts, vacuumed, did 20 minute yoga, rested in between. In the afternoon, Marty and I went to the pool and swam. I swam 24 real sloow laps. The water felt relaxing and just the right temperature. I felt perfectly normal, which is a wonderful way to feel.

Sunday

Today was a good day to lay low. Caitlin and Allie were packing up to return to their respective homes. I was still feeling the effects of the THE SHOT. Tired, achy, icky.
My friend Penny came and stayed until after the girls left. Caitlin and I taught her how to play Cribbage, so now I have someone to play games with. She helped me clean up and her company was really appreciated.
I rallyed in the evening and went to Exeter Meeting and sang shape notes ( www.fasola.org ) for 2 hours. I felt good, singing is distracting and has its own healing power.

One down 5 to go.

    Friday I felt terrific and thought, "I can do this is if I feel this good after chemotherapy." I went to the market, and the girls made biscuits for our brunch with the Ashes and the Wolfes. I got tired, but we had a delighful time. Last night was games with the Fochts, which of course is always lots of fun. I konked out on the couch, but the rest carried on!

    Today I hit the wall. I expected to wake up and feel terrific. I woke up and felt like ick. I went back to bed until 11:00, but still felt tired. I was worried that perhaps I had over done it, but then I remembered that I was supposed to feel crappy after  the shot. I took a few advils, whcih gave me a lot of relief. I spent the rest to the day watching Christmas movies with Caitlin and sitting in front to the fire. Im hoping to feel tip tip tomorrow and go sing some Shape Notes.

The Back Story of this week

   I started chemotherapy on Monday, December 21, 2008. I was there from 8 o'clock in the morning until 5:00 PM.  Before they even started the chemo they gave me bags and bags of medicine to avoid nausea, replace minerals that would be depleted, and lasix to pee it all out among other things. I spent most of the day sleeping. Allie was a gem, staying with me the whole day. Marty was in and out bringing lunch and amusements. 

   Tuesday morning, I had to go back in for the second day of treatment. Fortunately, that was only one medicine and I was done in about two hours. I got out in time to go to my agency's holiday party. I felt great, ate lunch and headed off for an MRI of the brain. No word on that yet.  I rested all afternoon so I could go pick up Caitlin at the airport. Just as we were leaving, she called to say her flight had been cancelled until the following day due to a storm in chicago! We were all a little dismayed, but Allie said, "Let's put on our pajamas and finish the gift wrapping." 

   Wednesday's treatment was a repeat of Tuesday. We tried to do a little last minute shopping in the rain. Thankfully Dave, Allie and Sulen picked Caitlin up from the airport. She arrived in time for the late service at Peace Church. It was a lovely service as always.

    I had to go into the hospital on Christmas morning for a shot to stimulate my bone marrow to make white blood cells to fight off infection. That was easy: in and out. Allie made us a marvelous breakfast of pancakes and bacon, which tasted great.  We had our traditional Indian feast for Christmas dinner, followed by a visit to the Burds to catch up with the Brickers. 

     

First Treatment

When we went in for our first treatment, and they told us it would take all day we didn't realize they really meant all day.  We came in at 8:00 and didn't leave until 5:30.  All the first day, Monday treatments will be like this, except we won't have the teaching session before they start and also we'll come in a bit earlier.  The transfusion area is actually quite nice, there is a recliner like chair for my mom sit in, and it is designed in a circle with all the patient areas on the outside of the circle and the nurses desk in the center of the circle facing the patients.  Where we were there is a very beautiful mosaic on the pillar in the center.  They have little refrigerators stocked with beverages (which is good because mom needs to drink a lot during her treatments) and crackers to snack on.  Since we are going to spend all day there, they suggest packing and bringing lunch which Marty brought us on our first trip.  So first we had our teaching session with the nurse who was very nice and went over all the side effects, which was pretty depressing.  We decided that Mom would get a port put in before her next treatment (so they are able to give her the IV medication easier) but for the first cycle they will just stick her each day.  Next they started the blood work that they have to do before each cycle starts.  They are basically making sure her white blood cells, hemoglobin, platelets and neutrophils are high enough.  They also did some tests on her liver enzymes that we can hopefully watch decrease as she continues on her treatments.  Then they started her infusions.  First,  she gets IV anti-nausea drugs emend, aloxi and dex then she gets a 1000ml fluid bag of potassium and chloride.  Next she gets a bag of Lasix and Mannitol to help clear the chemo out of kidneys because it can be very poisonous. So it wasn't until the afternoon when she got her first bag of actual chemo.  She has two bags of cisplatin which take 30 minutes each and then she has another smaller bag of fluids.  Finally she has a 90 minute bag of VP-16 (etopside).  The treatment was fairly painless, except a little discomfort with the second back of fluids.  It is comforting that before they hook up the chemo bags two nurses have to check her name and birthday with the bag and her wrist band to make sure there are no errors.  Mom basically slept throughout the whole treatment which is good, I don't think she often  has the opportunity to sit for 8 hours straight so it was a mini vacation with an IV.  On Day 2 and 3, Tuesday and Wednesday, she will only have the 90 minute VP-16 transfusion and will take the anti-nausea drugs orally before the treatment.  On Thursday, Christmas Day, she has to come in and get a shot to stimulate white blood cells and her immune system.  The shot should make her bones a little sore, but is very important to have her blood numbers back up in time for the next treatment.  Overall everything went well for the situation.

    My mom sent me this email a few days ago:

"I remember when you were little, you once said that if you saw
alligators on the way to the barn that you would kick them out of the
way. So we hope that you can kick this cancer alligator out of the way".

   It reminded me of when I was little and fearless. Allie thought it was a good name for the blog and I agree.  The purpose of the this blog is a place where all of you are interested and care about me can check on me without feeling like you are bothering us with phone calls. We will list medical treatments and how I am feeling in separate posts. Please leave comments and messages. The positive wishes that I have been receiving have encouraged me.

Fox Chase and Thomas Jefferson

Today we visited Doctors at Fox Chase and Thomas Jefferson and they basically both gave us the same information.  The treatment for the first round of chemotherapy is very standard and consists of cisplatin and etopside.  On day 1 both cisplatin and etopside will be given, then on day 2 and 3 only etopside will be given, followed by 18 days of rest.  So the total 21 days will count for one cycle of therapy and the doctors suggested doing 6 cycles.  They said that after the 6 cycles often the tumors are so reduced in size you can often not even see them. The disease needs to be treated systemically throughout the body through chemo and not just focusing on specific areas such as radio ablation or surgery.  After the 6 cycles, there will be a break usually 2-3 (maybe 8-9) months before the tumors start coming back.  They highly suggest during this point in time to do 3 weeks of prophylactic brain irradiation, even if there are no tumors in the brain because it has been shown to help patient outcome.  Every 2-3 cycles mom will scans to see if the tumors are shrinking and when they start to grow back.  During the second round of chemotherapy is when there are some more options available, but most of them are experimental and part of clinical trials.  It really depends where the tumors come back that will determine the treatment plan.

However all the doctors were very clear that we need to start treatment right away.  Also the doctors were very encouraged about how healthy Mom looked and that she has practically no symptoms.  We decided that we will see the Doctors at Fox Chase but the actual treatments at Reading Hospital.  Whenever Mom gets a scan, we'll make an appointment at Fox Chase and we'll discuss the results with them and from there determine our future treatment plans.  I think this is the best situation because driving back and forth to Philly 3 days in a row would be very tiresome, but I feel much better having the expertise of the Fox Chase Doctors.  

Thankfully we were able to get a hold of the Doctor at Reading who had luckily already scheduled time for Mom's treatment the following week, so we did not have to admit her to get treatment.  Her chemotherapy will start Monday and she will have treatments on Tuesday and Christmas Eve (Wed) as well.

Diagnosis

Today my mom was diagnosed with Small Cell Lung Cancer.  The cancer is malignant and has metasized to her liver.  She has one smaller spot on her lung, but she has several on her liver spanning two lobes and some of the spots are quite large.  Small Cell Lung Cancer is rare with 15-20% of all patients diagnosed with Lung Cancer having the small variety.  This was a pretty disappointing diagnosis, because even though all Lung Cancers can not be cured and only have palliative treatments, Small Cell Lung Cancer is much more aggressive.  However, since Small Cell is so aggressive, it also responds rapidly to chemotherapy, which is a blessing.  The doctors have suggested starting chemotherapy immediately, but we plan on going to Fox Chase and Thomas Jefferson in Philadelphia to get more opinions.