Monday, June 29, 2009

Weekend at Old Songs



video
Video: Caitlin contra dancing. Sorry you have to tilt your head. I don't know how to rotate it.
Pictures: Old Songs stage
Mung bean explosion in my absence.
The weekend was an all round success with singing, dancing, fiddling and lots of other types of music.
My buddy, Bob, and I drove up Thursday morning to Altamont, NY (near Albany). We unloaded our stuff (and we had a lot), then I drove to the airport to pick up Caitlin while Bob and our friend Phil set up the campsite.
Bob made us gourmet meals and all we had to do was the dishes, which is the best deal I've had in a long time.
We had a lot of rain Friday morning, but since we were camping with guys, they were serious about keeping the campsite dry and every thing battened down. We had rain varying from drizzle to downpours every day. We stayed dry so it wasn't bad at all. The rain cleared off Friday afternoon in time for Caitlin to go to her fiddling workshop and me to my mountain dulcimer workshop. I started learning 4 tunes and I am motivated to practice them at home now. Caitlin and I went to the after concert contradance which starts at midnight and goes to 1:30 AM. We slept well.
Saturday and Sunday started off with shape note singing and the rest of each day was filled with wandering around the different stages listening to musical groups. We went to the after concert contradance on Saturday night too, but I didn't last past 1:00 AM. I slept well that night also on my comfy air mattress in my dry tent.
We packed everything up in record time on Sunday and dropped Caitlin at the airport on our way home.
Medical stuff:
1. My hair fell out on Saturday. All of it. It's depressing.
2. My skin is blotchy from the radiation. I have cream to put on it.
3. Radiation is over on 7/2.
4. The insurance company is paying for the Tarciva and the pharmacy is sending it Wednesday.
Side effects: diarrhea and an acne-like rash. yeah.
5. I have an appointment for a CT scan on July 7.

Well that's all the news from the 17 acre wood, where the women are still bald, the men are patient and the cat is in worse shape than the owner.

Tuesday, June 23, 2009

A trip to the doctor

I had a busy day at the hospital yesterday. I rode my bike from my office to the hospital for radiation. It was the first day that it didn't look like I would be poured upon since I started radiation. It is actually faster to take the trail from downtown Reading to the hospital then to drive!
I met the the radiation doctor after the radiation. He asked if I had any problems with balance. I told him I rode my bike. He said I guess not. I am starting to get some pink skin at my temples. They sent me to the Image shop to buy some cream. The nurse said it works better than prescription cream.
I met with my oncologist before radiation. He had just came back from a conference and wanted to talk to me about taking an oral chemotherapy pill. Marty had also looked into this medication and wanted me to talk to him about it. The plan before was just to wait until the tumors started to grow then try something (or not). This pill is Tarceva. It works really well if the tumor has a certain mutation. But it also has some benefit if it doesn't. We talked about having the tumor tested to see if I have the mutation, but since it supposedly has a benefit in either case and I really don't have many alternatives, I decided to try it. I am waiting for a call back to come in for the teaching. They had to get approved by the insurance because it is very expensive. I hope it works and doesn't give the side effects of diarrhea and acne.
I have been tired ,working a lot. and trying to get ready for my trip. I tested the air mattresses this morning and it seems the pump is shot. I am going to have to take a trip to the camping store. I still have some flowers to plant, but other wise in good shape.

Sunday, June 21, 2009






















I planted my squares with vegetable plants and seeds and herbs. Unfortunately, I forgot what I planted before I wrote it down. I'll have to wait until things start coming up and hopefully not double plant. We need some sunshine to get these golden raspberries to ripen and help the seeds sprout. The heart shaped is mostly tomatoes. The purple flower is a wild flower which I have never see in my yard before.
I didn't have a high power weekend but I am tired today. Friday night we went out for dinner to GO FISH with Kathy and Mike for Mike's Birthday. Saturday, I worked around the house while the girls cleaned. Later I went to hear my friend, Jean,'s group, Little Sister, sing at Arts on the Ave. Unfortunately, the festival was a bust because of torrential downpours, but when Little Sister started singing and the skies cleared.
Later, I met with my buddy Bob to make our plans to go to Old Songs music festival. Bob has most of the food under control. My contribution is using my talent for spacial relationships to pack all his cool camping stuff and yummy food into the SUV. (That and my penchant for chatting on road trips.) We will be heading out Thursday morning after radiation. I'll pick up Caitlin at the Albany airport around 4:00 PM. We will set up camp and kick back and relax for the rest of the weekend with old friends.
http://www.oldsongs.org/festival/
Caitlin and I will be competing for most participatory camper award, so I'll have to pace myself. There are shape note and gospel singing, contra dancing, fiddle and dulcimer workshops.

Friday, June 19, 2009



Penny. Mary and I had a great time at Mary's cabin. We took a leisurely drive , stopping at Wegman's, and a quaint bakery to provision our overnight. The weather was still nice when we arrived so we took a little hike around the park. We mostly sat outside until it rained then went inside and drank wine, chatted a lot and played games. We had a lot of fun playing the Mother Game, which Caitlin got me a few years ago for Christmas. Mary also turned us on to Bananagrams, which I see as a posible addiction in my future. It got chilly and damp with all the rain, so we lit a great fire in the beautiful stone fireplace.
In the morening, after a leisurely pancake breakfast, we went to the lake to try to spot the bald eagles, but we didn't have much luck.
I was hoping to see a bear. We didn't, but as we were arriving, a doe and tiny fawn crossed the road in front of us.
It would have been nice to stay longer, but I was glad we could do something with my radiology schedule.

Tuesday, June 16, 2009

Taking off



I had the fourth dose of radiation today. I was tired and sort of depressed. It was gloomy and I didn't want to get out of bed. When I showed up at Radiology for some reason they were having a luau at 8:45 in the morning. They had food out, and ceramic hula dancers, Don Ho on the boom box and all the staff had on Hawaiian shirts and grass shirts. Maybe it was my mood , but I found it incredibly bizarre to be faced with that much cheerfulness so early on a dreary morning. I couldn't even bring myself to ask, "What's up with the Luau?"
I called up Penny and we went for pedicures. That did cheer me up. I worked the rest of the day. I took the new nurse, Gloria, out on visits with me and had to show her some of the detective skills that are required of NFP nurses. (We found our client and got our paper work done!)
I just packed my overnight bag. Penny, Mary and I will head out for the Promised Land (State Park) tomorrow after radiation. I am really looking forward to just chilling with my BBFs without any distractions of home, husbands or work.
Pictures are a self portrait with my new hanging basket and the torso with newly planted stone planters.

Monday, June 15, 2009

More gardening





After my busy weekend I feel like I need a day off to recover. I had radiation bright and early this morning, got caught up on my paper work, did my visits this afternoon, then planted flowers with my friend Susan. I was surprised to see this turtle on the back porch. He disappeared when I went to look for the camera, but I found him in the yard. I don't know what kind he is but he has beautiful markings. I took pictures of the new plantings, but it was too dark. I will try again tomorrow.
Working 8 hours just seemed like a lot today.
The pictures are from the sing this weekend. Jason, our son-in-law, brought me back this skirt and scarf from India.

Sunday, June 14, 2009

Gardening








My former co-worker, Kathy, her husband, John, and our friend Amy came over to help me make my new square foot beds. We hauled rocks to make the borders, then dug out 6 inches of rock and dirt and replaced it with mix of peat, vermiculite and cowmanure/humus mix. They knocked out two new beds in 2 hours and we had a pleasant dinner together.

Before they came I took the convertible to the garden centers. And you thought it was just a sports car. It is really easy to load things in the back seat with no doors or roof to worry about.
I visited the "infirmary" rack at Home Depot. They had half flats of marigolds, geranium and inpatiens for $2.67! They really don't look that bad. They just need to get them into the ground and nursed back to health. I also used my birthday money from my mom to buy some big hanging baskets, some red geraniums, herbs and tomatoes. My botanist friend, Susan, is coming to help me plant tomorrow night.

I have been so late getting a garden in and all this help is such a wonderful gift.

Saturday, June 13, 2009

All Sung out






The pictures are from today's sing at Exeter Meeting house
It's been a busy 24 hours with overnight guests here for the sing, making food for the pot luck and singing from 10 to 4 today. The singing was excellent. Singing shape notes is a lot like yoga. One doesn't think about anything else, so your mind and thoughts get a little vacation. Plus the music and and harmonies are beautiful.
recording of the song I lead today

Relay for life

Thanks to all my friends and family for donating for the American Cancer Society's Relay for Life. Last Friday I sent out emails, posted on facebook, added a link to my blog and made what I though was an ambitious goal of $500. Today, one week later, we've raised over $1000. I am so touched by your generosity and support. It makes me feel like I have a whole team of people behind me. Like that guy on the Verizon commercial. In case you still want to donate I think you can any time.

I went to the opening of the event tonight. The team from my church, Hope Walking, was camping out 6PM to 6AM. I went for the survivor walk. It was visually meaningful. The survivors walked one way around the track and the caregivers the other. When we met in the middle, the caregivers met their survivor and continued around the track with them.I didn't take any pictures, so I hope someone will email me some.
Staying over looked like fun. I have an all day Sacred Harp sing to attend tomorrow and I invited a family to stay over at my house, so I needed to be home.

My second radiation went fine. No side effects so far. I arranged my radiation schedule so that Mary, Penny and I can leave Wednesday morning after radiation at 7:30AM and come back Thursday for radiation at 3:30PM.

Thursday, June 11, 2009

Radiation is rad

The relay for Life is tomorrow night. last chance to sponsor before the walk Thanks for helping raise my goal from 500 to 800 dollars!
There was an article in newspaper about Relay for Live at Daniel Boone High school in the paper tonight. The Jr class is organizing it in honor of a teacher who died of cancer last year. I was shocked to see that I knew her. She was a member of Peace Church. Her story was really compelling. She was diagnosed with advanced colon cancer at age 45. After her treatments she went back to teaching (she had just graduated and had only been a teacher for 2 years.) Her husband drove her to school everyday and sometimes she taught in a wheelchair. She died on a Sunday after teaching Friday and doing Parent teacher conferences. That's how I want to go. I actually said that this morning after I rode my bike to work. I can't die if I keep moving. My car was in the shop getting a new muffler and Marty had an appointment, so I rode the bike to the office and walked to the shop 2 blocks away. It is 7 miles from the house to the office, but it is all downhill except for the last 2 blocks! If you have been to our house you know the down hills are Scary! I like having the bike at work so I can ride the trails after work or ride to some of my visits.
I went to my first radiation treatment today. When I stopped in at work after wards they asked me how it went and I told them that it was the best thing they have done to me yet. I got looks: "Is she being sarcastic?"
"No, No", I told them "it is true." Way better than Cat scans, PET scans, bone scans, MRIs and of course there is nothing worse than chemotherapy except maybe being tortured by the Taliban and that doesn't last as long.
I go in, they put a personalized mask that they made for me yesterday over my face. They have to map out where the treatment goes with ink, so they do it on the mask instead of tatooing my head (for which I am very grateful. They zap me on one side of my head for a minute and the other side for a minute and I'm done. They run a tight ship, I am in and out in half and hour.
I went without a scarf for the first time today. My hair isn't too long but it's visible. I decided since I'll only have a hair for a week or two, I may as well enjoy it. I'm also supposed to keep my head uncovered when I'm inside to help the skin stay cool and dry.

Wednesday, June 10, 2009

Which do you want first? The good news or the bad news?

3 More days to The Relay for Life. Support me in Relay for Life

The bad news is they called me this morning with my MRI results.I knew it couldn't be good news because they never call you the next day with normal results.
They gave me an appointment right away to go over the results. The bad news is that there are two small (less than 1cm) nodules in the frontal lobe of my brain.
The good news is that I was going to have brain radiation done anyway. It starts tomorrow and will be for 15 days instead of 10 days. The really good news is that small cell cancer responds well to radiation. The radiologist was all chipper about the prognosis.
If I had to pick I'd be a radiation oncologist instead of a regular one. Fewer side effects.
The other bad news is that I had to cancel my trip with my friends Penny and Mary. We had planned to go to Mary's cabin in Promised Land State Park for 3 days mid-week. So I guess we will have to go to day camp instead of sleep over camp. It's kind of a shame because the treatment only takes half an hour every day. It just has to be done every day.

Tuesday, June 9, 2009

Meredith and Wendy



Click here to make a donationMy client L. gave me permission to put this picture of the two of us wearing our wigs, Wendy and Meredith, on the blog. L. has Hodgkin's Lymphoma. The American Cancer Society has helped her a lot. They gave her a voucher to get the wig and also arrange transportation to get to her chemotherapy appointments. She has a lot on her plate with cancer and an 18 month old.
I had my MRI this evening. It was supposed to be at 7:45 this morning, but the doctor's office hadn't sent me for blood work. They couldn't do it until after I had a creatinine level drawn to make sure that my kidneys could handle the dye. Thankfully, MRIs don't bother me. This was a really noisy one. It banged so loudly that the bed shook. I just closed my eyes and chilled. They gave me ear plugs and put a lot of padding around my head. No one told me when I would get the results.
These purple flowers came up from last year and I don't remember planting them or what they are.
I had planned to go sailing tomorrow night, until I remembered that I am working at Baby Preview. So if anyone would like to crew with Marty or be the receptionist at Baby Preview just let me know!

Monday, June 8, 2009

Monday


Even though I reached my goal of $500.00 for the American Cancer Society's Relay for Life,don't let that stop you from helping me to reach my new goal of $700.00. Many thanks to all my contributors.
Donate here
The picture is of my 4x4 foot square foot garden. I want to make two more when I get my rock hauling help. Hopefully, I'll get it planted soon.
Tomorrow I am having an MRI of the brain at 7:45AM. I'm glad they got me in so promptly. I have been imagining all kinds neurological symptoms. If the MRI is clear, I will have an appointment to set up the radiology on June 18th and start the treatment the following Monday.

Sunday, June 7, 2009

Great weekend





I will be putting up a message all week for contributions to Relay for Life. Many thanks for those of you who have contributed. My Donation Page
Today was Music Sunday at church. All the choirs sang and it all around spirit filled.
After church, Marty and I took the convertible out to visit my friend Jean's little farm. She gave me snow peas, snap peas, a couple kinds of lettuce and some Belgium radishes. She also gave me tomatoes plants, so I was inspired to get my garden going.
The pictures are the before and during of the 4X4 foot bed I made for Square Foot gardening.(http://www.squarefootgardening.com/) It is supposed to be a raised bed, but I dug down instead so I could use a rock border instead of boards. I want to do two more beside it if I get some help. The pictures are before and during. I will post the "after" tomorrow. It got too dark for picture taking.
It really didn't take me all that long to do the little garden bed, but I was really tired and sore when it was done. I got out all my fancy creams that I made the other night: piggy polish to soak my feet and coconut and lemongrass bath salts.
The other pictures are of new growth on a maple tree and my peony. I saw a Scarlet Tanager in the woods today, but couldn't get a picture.

Saturday, June 6, 2009



Caitlin taught me how to do this fancy link to sponsor me for the Relay for life. Hope Church has a team called Hope Walking.( which I think is such a great name)To sponsor me just click on the link. my donation page

My new cleaning girls started today. I've never had hired cleaning help before, so I was excited. I had asked one of the Mennonite women with whom I sing if she knew anyone from her church who did cleaning. She gave my name to someone who I discovered I knew from the Birth Center. Her 13 year old daughter and niece were looking for a cleaning job. So it turns out that I actually attended the birth of one of my cleaning girls. Isn't that kind of cool?

After the girls left this morning, we took the boat out to Lake Nockamixon near Quakertown. It was a beautiful day on the lake. There was enough wind for easy, fun sailing. We had such a nice relaxing time.
I had planned to go Contra dancing, but we got back too late.

I finally have peas starting in the garden. The picture is a newly "hatched" snow pea. Tomorrow I am finally going to get around to planting some tomatoes.

Friday, June 5, 2009

Another Birthday celebration and another doctor visit

Last night my co-workers took me out to dinner and to a "make your own" spa night. It was really fun. The Paisley store in Kutztown is a bath and bodyworks sort of place except they make their own soaps, gels, scrubs and creams etc. We all did a lovely foot soak, scrub and lotion, then we made our own body creams. The owner gave us a tutorial on all the different oils and their aromatherapuetic properties. I made a body cream with a combination of English tea rose and bergomot and named it Lady Rose Grey as bergomot is in Earl Grey tea. It was fun having all my co-workers together and I appreciated those who stayed up past their bedtimes! My co-workers are all a little nuts, esp when we are all together. I can't believe I forgot my camera.
This morning I went to the Reading Hospital to consult with the Radiation Oncologist. He said small cell lung cancer has a proclivity for spreading to the brain. Since chemotherapy doesn't cross the blood brain barrier well, radiation will prevent occurance in 85% of patients. If I don't get the radiation there is a 50 % chance that tumors will grow in the brain.
According to this doctor, getting radiation therapy will be a walk in the park compared to chemotherapy. I will lose my newly acquired hair and may have some dermatitis on my scalp. It is low dose radiation. I will have 10 treatments: Monday through Friday for 2 weeks. The treatments only last 5 minutes a day. I don't know exactly when they will start because I have to get a base line MRI of the brain done first. They want to make sure there is no tumor activity there already, because they will treat it differently if there is. I really truly hope that there are no tumors in my brain.
Tomorrow my new cleaning girls come for the first time, we are going sailing in the afternoon and contra dancing in the evening. (weather and energy permitting)

Wednesday, June 3, 2009

Birthday

My birthday yesterday was so busy that I would sort of like a do-over. I got up at 5:30 for my appointment at Fox Chase Cancer Center at 8 AM. I saw the same doctor as last time. She recommended that I get preventative radiation to my brain. Apparently, chemotherapy doesn't cross the blood brain barrier and the having the radiation significantly reduces the chances of tumors forming in the brain. I have an appointment with the radiologist at Reading Hospital on Friday morning, so I will find out the particulars before I make a decision. I need to know what the side effects are, if they are permanent, the course of treatment, and how it will effect work etc. As I am particularly fond of my brain, I am inclined to have the treatment after I have heard about all the details.
The doctor is also going to present my CT scan results at "Tumor Board" (or something like that) to see if the radiologist thinks is is worthwhile to to blast what is left of the tumors with sound waves called radio oblation. She also recommended that I repeat the scans every 6 to 8 weeks. That's about all they have to offer for now.
I have been trying to do my part. I got a lot of exercise over the weekend with swimming and biking. Monday morning I did yoga. I went swimming tonight. Only 25 laps because the swim aerobics class took over the pool 25 minutes after I started swimming. I also have been trying to eat nourishing food. One of my clients gave me a lot of mushrooms which I am still trying to use up. Tonight we had steamed vegetables over whole wheat noodles with mushroom-asparagus sauce. ( Marty added leftover Indian food to his)
After we got home from Fox Chase, I ate a light lunch, packed up Leo in the convertible and headed off to upstate New York to meet Allie to return Leo. We met about 1/2 way for each of us, had a salad at Panera on the patio (with Leo) and turned around and headed back. On the way up I took the scenic route through the Delaware Water Gap. On the way back I somehow missed my turn and took a really scenic route through Promised Land Stare Park. I like driving by myself and it is particularly nice in the convertible with the top down on a June evening.
When I got home, Marty took me to a late supper at the Indian Restaurant in Reading. Today was a regular day at work. Tomorrow my co-workers are taking me out to dinner for my birthday so I am still celebrating!

Monday, June 1, 2009




Still not having much luck getting a picture of my new hair. It looks darker, more like a 5 o'clock shadow.
I thought I would be too tired on Sunday from sailing to do anything. But surprisingly, I felt raring to go in the perfect spring weather. The morning got off to a slow start when Marty discovered halfway through making pancakes that we had no baking powder. I had thrown out all the leavening for Passover and never replaced it! At the time, I thought getting fresh baking soda and powder every year was probably a good thing. Marty is too old to have taken home ec in school (only girls took home ec back then), so he doesn't know about getting all your ingredients out before you start baking. I ran to the store and ended up being late for church, but the pancakes were delicious. After church, I worked in the flower beds trying to repair the damage that the dogs have done.
We went for a bike ride later in the afternoon. I was a little worried about how it would go as this was the first time I had been on a bike since last fall. We took the trail along the Tulpehocken Creek which is almost completely flat and I didn't have a problem at all. We rode up and back which is 8.4 miles. I actually rode more because I kept losing Marty and I would go back to look for him. His cycling cadence is pedal, pedal, glide, pedal, pedal, glide. I am a more steady peddler. We saw two big, I think blue, herons in the creek.
After we got back, I cleaned myself up, picked up my singing buddy Susan, and we took the convertible to Exton to sing at a friends house. All in all it was a great day.
Back to work today. Tomorrow I go to Fox Chase for another opinion. Then I'll meet Allie in NY to give Leo back.