Monday, August 31, 2009

Grandma Update

My mom is having a good time helping my sister in Chicago, but she wanted me to post a short grandma Update. My Aunt Janet says she is sitting up eating pork roast, holding her own heart rate steady, reading her get well cards and sending Aunt Janet to Walmart to get supplies. She should be out of the ICU in the morning, but asks that she has no visitors until she comes home from the hospital.

Chicago,Chicago is my kind of town

After making sure that my mom was out of the woods and in Janet's capable hands, I continued on my trip to Chicago on Saturday. Thanks to my mom, I missed all the heavy moving. Caitlin's new house is very nice: vintage Chicago. Right now it's cluttered up with a lot of boxes. Caitlin loves her stuff. I tease her that she has the Grandma Claire gene; although Caitlin is tidier and much sweeter.
Sunday, we went through the stuff that was left, sorting and pitching. Today she had to go to work, so I went over and cleaned. All we have to do is gather up her plants and garden, take out the trash and we are done.
I talked to Janet this morning. She said they have mom walking and she has pain. She was the most alert that she has been. I think the whole experience was overwhelming. Janet feels she turned the corner for continued recovery today.

Friday, August 28, 2009

A Twist of Fate

So my mom started out her journey to Chicago yesterday, and was hoping to get to my Grandparent's Farm around dinner time, to visit and spend the night before continuing on her journey. However, when she was about two hours away she got a call that my Grandmother ( they very same one she was visiting) was in the hospital. My Grandma, had a cardiologist appointment yesterday morning, and he became concerned with her, and sent her to another hospital to potentially get a pacemaker put in this morning. My mom was able to meet her at the hospital but it turned out that my Grandma's condition was much worse, with many of her arteries clogged. Thankfully my mom was already en route and was able to be with her last night and this morning before surgery, my Aunt Janet also made it in safely this morning after flying the red-eye from Portland. This morning/afternoon she had 7 bypass surgeries and they fixed a valve in her heart. They have finished all the surgeries and everything seems to have been successful, they are putting her back in her room, but my mom and Aunt have not gotten to see her post- surgery yet but they should be able to soon.
So Mom's trip to Chicago to see Caitlin has been postponed, but since my Aunt is in town I am sure she'll be heading there once my Grandma feels better and then she will probably take care of my Grandma for a bit on her way back to eastern PA, but she will also have to start some treatment herself once we get her biopsy results back.
But thankfully, everything went well and was successful and my Mom was glad she could be there!

Wednesday, August 26, 2009

humpback whale
baby whale nursing
humpback blowing steam
lazy harbor seals

baby whale nursing video
click here for vacation slide show.
This probably the end of the vacation photos, but if you want to see more, click on flickr site above. Had a busy day at work with a sweet moment. I was doing a last visit with a client. The dad came home with a bottle of sparking apple juice. The little 2 year old said "Agua" water:her generic term for all liquids. Then she disappeared into the kitchen and came back with two cups. One for me and one for her. I was very impressed with her hospitality.
Well I am off to pack and go to bed to start my road trip tomorrow to my mom's then Chicago.

Tuesday, August 25, 2009

Who sent me fancy candy?

This morning the doorbell rang at 9Am giving us all a start: we aren't used to people coming to the house. It was the Fed-EX guy with a package for me. The cardboard was lined with silver insulation and it had freezer packs on the bottom. Inside was a package of fruit pates and a box of artisanal chocolates from Christopher Elbow. They are the fanciest chocolates that I have ever seen; with unusual fillings like caramel infused lavender. Unfortunately, there was no card or any other clue as to the gift giver. This gift is too special and yummy to go unthanked, so please fess up.

After relaxing and singing on Sunday, Marty I went to Sloan-Kettering in NY on Monday. It was a nice drive and not too much traffic. The doctors were nice, but they can't recommend anything until they get the biopsy slides and results from NIH. So I'm on hold. We got Chinese for dinner. My fortune was,"You will spend your old age in comfort and material wealth". Marty's was "God will help you overcome any hardship". I think we got each other's fortunes.

My trip to Sloan-Kettering gave me a sense of urgency to do the things I need to do. I am planning to drive out to Caitlin's and help her move to her new condo the end of this week. I'll be home for the singing at Maiden Creek the Saturday before Labor Day. I'll probably take a long weekend to visit Allison the weekend of the 12th. I want to participate in the Cancer Walk in which she is participating. As you can see from her widget, she is doing a great job raising money.
I have uploaded nearly all my vacation photos to my flickr site, I'll post the link tomorrow.

Saturday, August 22, 2009

I am home and OK

Since the biopsy I had yesterday was my third, and I never had had any problems, I didn't have any qualms about having it done this time. I was a little put off when I arrived at the Interventional Radiology unit and they didn't even have a receptionist. I thought it was really ratty compared to Reading Hospital and Fox Chase where I had had the other two. I thought NIH would look more high tech. The doctor, however, was awesome. When she heard we were from Pennsylvania, she told us she had graduated from Swathmore. She also graduated from Harvard medical school so I figured I was in good hands. And I was. She did the needle biopsy under ultrasound instead of CT scan, so she spent a lot of time pressing on the liver tumors and I think that was what caused the pain after the procedure.
When I complained of the pain in the recovery unit, the doctor had me hustled right down to CT scan to make sure there was no injury or hemorrhage. She came and looked at the CT scan while they were doing it. That impressed me. What didn't impress me was when the escort who was pushing my wheelchair knocked on the CT scan door, and the person who answered it was still talking to her co-worker about lunch. She gave us a look, then asked the escort:
Did you check in with the front desk?
Yes, she said to come right back.
Ok, Well park her over there.
Then she shut the door, the escort parked me moaning in my wheel chair and wished me luck as she abandoned me. When the snotty CT tech finally opened the door, she didn't even glance in my direction. I started yelling Help! Help Me! (I felt like the old person who is always your grandma's roommate in the hospital. The one who yells help the whole time you are there visiting grandma.) That got her attention anyhow.
The other thing was how slow they were to address my pain. I kept throwing up, even though no one would believe I wasn't really nauseous. They gave me oxycotin (Rush Limbaugh's drug of choice) and it did nothing. She kept saying my blood pressure was low (90/60) and they were afraid IV medication would lower it more. If I wouldn't have been so out of it, I would have said, "So give it to me already and sit here with a syringe of Narcan if I bottom out."
Nurses are big on "On a scale of one to ten how is your pain?" I assumed that was to figure out how to treat it. I kept pushing it up a notch or two every time she asked. When I finally got to 9 (after 3 hours) she came in with a big ole syringe of Dilaudid, and asked "Are you sure you want this? You are looking better!" I assured her that I did, and blissfully felt my legs and shoulders getting heavy and boom I was out.
After drifting in and out for a couple of hours, deliciously pain free, I ate dinner and said ok I am ready to go home. 4 of my doctors had come to the room that afternoon which was kind of impressive. Usually I more impressed with nursing and auxiliary staff than I am with medical.
So any way I am home relaxing today. My goal is to finish the vacation laundry and start on the weed patch this evening when it cools off. I miss that Alaska weather.

Friday, August 21, 2009

Biopsy Update

After calling several times today, to check on on the status of my mom (she apparently left all her cell phones in the car and Marty had not gone out to get them) I got a hold of Marty and through him my mom. She had to get a needle and a tissue biopsy (she hasn't had the tissue before) and everything apparently went well with them, except my mom said it seemed like they had to keep pushing deeper. After the biopsy, however my mom was complaining of pain, and they tried to give her medication but none helped. They also did a catscan to make sure everything was alright and it appears that it is but that didn't seem to stop the pain. However, they were able to give her some medication that helped that put her right to sleep, and when I talked to her she was a little loopy and ready to take another nap. They said once the medication wears off and she eats something she can go home, but she might end up spending the night in the hospital.

The Bad and the Possibly Good

So on Tuesday my Mom and Marty took a trip to the National Institute of Health in Washington DC. On the way to the appt, Mom's oncologist and gave her some bad news about the previous days CT scan. The tumors have increased by 50% in size since the last scan ~6 weeks ago. So the Tarceva (expensive daily chemo pill with very limited side effects) is not working, and mom has since stopped taking it. However, at the NIH mom got some possibly encouraging news. She was seen right away and the doctors were friendly. They diagnosed her cancer as an undifferentiated non-small cell neuroendocrine tumor. They are currently carrying out a clinical trial with a drug (PF-00299804) for Non-small cell lung cancer patients after failure of a chemotherapy and Tarceva. The new drug is very similar to Tarceva, in that it is taken orally has similar side effects, and it blocks three growth factor receptors, including the one that Tarceva blocks. It is a phase II clinical trial and only 74 people will be enrolled and they have some data from the first 47 patients. In order to participate, Mom will have to make several visits to the NIH to get blood work and tests to evaluate the drug. If the drug doesn't work, she will be able to leave the study and start another chemo regimen if she wishes.
In order to be eligible for the study she has to be KRAS wild-type so they need to do some genetic testing, she also has to be off the Tarceva for two weeks. In order to do the genetic testing she needs unstained tumor tissue. They found some at the Reading Hospital, but Mom opted to get a re-biopsied at the NIH. We are hoping they will re-analyze her tumor diagnosis as well, since through-out her treatment they have been treating her cancer as a small cell lung cancer, but it has been diagnosed by NIH and Fox Chase as non-small cell neuroendocrine.
Once we get the results from the Biopsy, and assure mom is eligible for the study, we will have to make the decision if we want to participate or not. The dr's told us that people who have not responded to the Tarceva have responded to the new drug; however I am concerned that the tumor types of the responding patients are adenocarcinomas and not neuroendocrine tumors.
I'll keep you updated about how Mom's Biopsy goes today, and also Mom will be going to Sloan-Kettering on Monday to see if they have any more advice/clinical trials available.

Wednesday, August 19, 2009

Sea Kayaking

salmon snack after kayaking
Janet and Alan Kayaking
Can you spot the eagle?
Perfect day
Janet and Al on the verandah of our cabin
I am not in the mood to write about cancer, I'm still thinking about vacation. Watch for Allison to guest blog about our trip to NIH in Bethesda. One of our excursions was sea kayaking at Ketchakan. Ketchakan has 300 plus rainy days a year. but the day of our excursion was sunny, clear and 75 degrees. We had a wonderful time in the nice weather and the smooth water in the coves. I didn't get a picture, but the water was clear and we could see hundreds of starfish clinging to the rocks. I didn't even know Alaska had star fish.
We also saw a bald eagle nest and parent and a harbor seal. After the kayaking, they gave us a delicious salmon snack. I counted it as a successful day as Marty didn't dump me out of the Kayak.

Tuesday, August 18, 2009

glacier Bay

Margerie Glacier: a tidewater glacier

Shortly after I took this I watched a giant hunk "calve", which is falling off in the water.
close up of the crevasses
bear hunting salmonWednesday we went to glacier Bay on the cruise ship. We went up a long fiord which ended at Margerie and Central Pacific glaciers. We also saw humpback whales, sea otters, sea lions and dolphins. the Make A Wish Weather Foundation was with me again. The captain told us it was only the second time this season that they were able to go that far up the fiord AND have the weather be that clear. On the way up the fiord I saw mountain goats through the binoculars. The whole thing was amazing.

Monday, August 17, 2009

Walk to Cure Cancer

Hey Everyone!
My mom is safely back in PA, had a catscan this afternoon and is heading the NIH tomorrow. I am sure she will be updating you soon.
However, I wanted to let everyone know that I am participating in UMass Medical's Schools- Walk to Cure Cancer on September 13th.
I participated last year, but obviously this year the event is very important to me.
Please consider donating to my page, or joining my walk team.
You can donate on my page or by clicking on the widget on the right of the blog.

Saturday, August 15, 2009

Best shot of Lake Louise

Alan and me at Lake Louise
Alan, Marty and Janet at the Hanging Bridge in Vancouver (before Cruise)
Me, part of the story of the totem poleFortunately, the vancouver airport has free WiFi. We said good bye to Janet and Alan at the dock this morning. They drove south to Oregon. We walked around Vancouver, visited Granville Island, the vancouver and Maritime museums. They have an amazing Farmers' Market and lots of interesting shops. We are waiting for our flight to Seattle. then we will fly to Phila., arriving at 6AM.
Our last day on the cruise was at sea. We saw some orca whales and I saw a pod of dolphins when I just happened to look out the verandah doors. I took salsa lessons with Janet and we all played trivia (and lost again). I probably wouldn't have done so many cruisy things if it hadn't been for Janet. The farewell dinner was a big shebang, with the waiters sing and dancing around the tables. It was great spending so much relaxing time with Janet. We soaked in the hot tub almost every afternoon that we were on board.
More pictures tomorrow.

Thursday, August 13, 2009


We only have another half hour in port with internet connection, so I have to be quick. We just came back from a wonderful afternoon of kayaking. Apparently it rains every day in Ketchekan, but today was 75 degrees and clear blue skies. Even God seems to be on the board of the Make a Wish foundation. We have had perfect weather for every activity that we have planned.
I have been having trouble uploading from my computer, so you will have to wait until I am back in PA to see more pictures.
When we were kayaking, we saw a bald eagle nest with an eaglet in it and the parent near by in a tree. We also so saw a harbor seal and a red throated loon.
Yesterday we spent half the day Cruising Glacier bay which is an amazing ecosysytem. I saw mountian goats (finally) on the way in. While we were "parked" at the end of the fiord to look at the glacier fields, we saw a grizzley come to the shore and eat a fish and nose around for another half an hour. I also saw orcas, sea otters, sea lions. I also got to see the glacier "calve" That's when a big hunk of it falls into the water with a crash. I was sitting on the verandah and just happened to be looking at the glacier when I saw a huge wall of ice break off break off and make a resounding kersplash. Well we are sailing. Will be home on Sunday morning.

Saturday, August 8, 2009

Lake Louise and traveling to Vancouver

We have been on Zuiderdam since Saturday. ( Today is Monday.) I have taken to ship life. Originally, cruising didn't appeal to me except for standing on deck looking at the scenery. But I am really enjoying the fancy dinners and all the other amenities of the cruise ship. Janet and I have been line dancing, soaking in the hot tub and playing team trivia! I have been having breakfast delivered to my room each morning.
The pictures are mostly of Lake Louise. After Lake Louise we drove to Mission to pick and J. and Alan's car, then on to Vancouver. We visited the Hanging Bridge and had Thai food. Pictures to follow. Boarding the ship was really exciting. when we walked into our room we were astounded. I expected a little cabin with a port hole. They upgraded us to a stateroom with a double glass door and a terrace! I still feel like the recipient of make-a-wish foundation!
Yesterday we were at sea all day and it was a cloudy. Today was magnificent. It was bright, sunny and warm. This morning the ship headed up the Tracey Arm fiord. It was a beautiful cruise with mountains, glaciers and beautiful green water. We saw lots of whales. (detailes and pictures to follow). We also saw stellar lions, a harbor seal, bald eagles.
My blogging will be sporadic because I can't use the phone on the computer from the ship.
Tomorrow we go to Skagway.

Wednesday, August 5, 2009


Hoodoo glacier formations
big elk

There were six Elk bulls grazing
this is the scenery every where you lookAnimal count for today: 6 elk, 5 deer, 1 bear and a bunch of ground squirrels. I didn't get a picture of the bear. I was too excited and he scampered off.
We hiked the Hoodoo trail today. They are stone pillars which were either formed by erosion or glaciers. In French, it is translated as Fairy Chimneys, which is much more charming. The trail overlooked the Bow river.
We also hiked up Johnson Canyon to see the waterfalls. It was a mile and a half to the upper falls, but I couldn't make the last half mile. It was a beautiful walk, but very uphill.
We visit Lake Louise tomorrow then head toward Vancouver.

Tuesday, August 4, 2009

ground squirrel

Athabasca Falls


Janet Marty and Alan

big horn sheep
We traveled from Jasper to Banff today. Along the way we stopped at Athabasca Falls, Columbia Icefield, Sun wapta falls and the Columbia Icefields. It was overcast today. We only saw one deer, one sheep and colony of golden mantled ground squirrels, which look like chipmunks. The sheep really are sure footed. This 0ne walked down a practically vertical rock wall.
We are staying at a very nice condo with a loft and fireplace in Banff. The stretch of highway between Jasper and Banff is purported to be among the most magnificent scenic spots in the world. I would be inclined to agree. We plan to go to Lake Louise tomorrow.
It is chilly tonight so we are relaxing at home in front of the fire. (which I started with one match for those of you who care)

Today we saw 2 bears, 1 elk, 17 big horn sheep, 6 deer, 1 pika and some sort of canine that chased the bear up the tree.
We walked around the Maligne canyon which was a deep narrow crevasse with loud rushing water. We visited Medicine lake which disappears every fall and reappears every spring. We finished our day with a nice long soak in the hot springs.

Monday, August 3, 2009

Leaving home and traveling to Canada

Pig Roast
box pig wa roasted in

My niece Kyleigh and me swimming in Deka Lake

Elton John at Citizen center in Philadelphia

We were three rows from the stage. Last Thursday, Allie and I left the beach, drove home and I packed for our British Columbia/Alaska trip. We took off for Philadelphia to stay overnight in a hotel for our early fight.
After we got settled in the hotel, we headed over to the Citizens Bank baseball field for the Elton John/ Billy Joel concert. Marty's nephew Everett, is friends with a band member and gave us free tickets. I felt like I was a recipient for the Make a Wish Foundation. Our tickets were only 3 rows from the stage. It was pretty amazing. We left early to avoid traffic and because we had to get up at 4:15 AM
Our flight to vancouver was uneventful. I got to see Star Trek again. Janet met us at the airport, we picked up our rental, dropped off Janet's car for the week and headed north to Deka Lake for the Gerard Family Reunion. Alan, Bryce and Kyleigh were already there with our tents up. Saturday was fun. We went swimming in the lake and I was runnerup in the cribbage tournament! Andy did a great job roasting the pig in his home made pig roaster.
We took off sunday morning after a huge campsite breakfast and made our way to Jasper, alberta. The drive was beautiful. We are staying in a cabin in the park and are off to tour the park today.