Carcinoid A rare form of "slow-growing" neuroendocrine cancer
Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness
– Oregon – California Trip
Sept. 21, 2006 through Oct.23, 2006
AKA “Sunny Susan in AZ”
Sept. 21, 2006 (Thursday) – Left home in Tempe, AZ at 5:20 a.m. Ate breakfast at McDonalds in Camp Verde, VA, and lunch at a Dairy Queen in Ludlow, CA. Spent the night in Shady Lane RV, Barstow, CA, cable TV for CNN and other news. Started listening to audio book: Guests of The Ayatollah by Mark Bowden heard first 6 of 8 CD’s. 507.2 miles for the day, when left home 5,564.2 miles on our 2006 Winnebago Outlook motorhome.
Sept. 22, 2006 (Friday) – Up at 6 a.m. breakfast in the motorhome. Listened to CD’s 7 and 8 of Guests of The Ayatollah by Mark Bowden. Entered Sequoia National Park, CA, about 11:30 a.m. from the south. Road very narrow, steep curvy with many warnings “vehicles over 22 feet not advised” we are 24 feet and had no problems.
Visited: Giant Forest Museum, Sherman Tree Trail to General Sherman tree, General Grant tree (and trail), Grant Grove Visitors Center; Susan took 10 pictures of a brown bear, photos of Stellar Jay, squirrels, chipmunks, birds.
Dinner at Grant Grove Restaurant. Left the park at 7,000 ft. and drove down to Fresno, seeing beautiful sunset. Arrived at Best Western Village Inn in Fresno, CA, about 8:30 p.m. Had dinner at Denny’s next door to motel. 335.8 miles this day.
Sept. 23, 2006 (Saturday) – Had 6:30 a.m. breakfast at Denny’s, left Fresno at 7:30 a.m. via CA 99 then I-5 heading north. Enjoyed the beauty of Mount Shasta, Shasta Lake and area. Listened to Flight of the Old Dog by Dale Brown on CD’s. We arrived at Joe Creek Waterfall RV Resort, north of Grants Pass, OR about 6:30 p.m. Site A5, level, lots of trees and Wi-Fi wireless Internet, but no TV. 513.0 miles for the day.
Sept. 24, 2006 (Sunday) – Nice relaxing day at Joe Creek Waterfall RV Resort. http://www.joecreekrv.com Walked tree shaded trail to the Jumpoff Joe Creek Waterfalls and another trail to a swimming hole and creek. Saw the local flock of wild turkeys several times during the day. Beautiful day, bright clear blue sky with high around 80, above normal for this time of year.
Sept. 25, 2006 (Monday) -- Left Jo Creek Waterfall RV Resort at noon. Drove north in I-5. Another bright, clear, beautiful day. High in Eugene, OR was 86. Stayed at the Eugene Mobile Village and RV Park.
Sept. 26, 2006 (Tuesday) – Spent the day in Eugene, Howard’s hometown. Howard started grade school in Eugene. Since his Father was in the Army they then lived in California, New Jersey and Germany before returning to Eugene when Howard was in the sixth grade. He then attended junior high school, high school and his first 2 ½ years of university in Eugene, OR.
Doug and Maryann Appel picked us up about 6:30. Howard and Doug attended school together and were friends also from Boy Scouts, hiking, backpacking and camping. We drove around looking at places Howard and various friends had lived in the mid to late 1950’s and early 1960’s. Then we had dinner at Chapala Mexican Restaurant, 136 Oakway Center, Eugene. Good food and great company and visit.
Sept. 27, 2006 (Wednesday) -- We drove to friends Glen and Joann Rissbergers home in Gladstone, a suburb of Portland. Plugged into electricity, we slept in the motorhome. Howard and Glen attended high school and college together; and were friends through amateur (HAM) radio, hiking, backpacking and camping. Howard and Glen earned their HAM licenses in 1957. Joann made dinner of lasagna, salad, pineapple salad, garlic break and lemon pie. Another good meal with great company and visit. Had driven total of 1,600.9 miles from our home to Rissbergers.
Sept. 28, 2006 (Thursday) -- Glen and Joann left for their schools; we left the motorhome at their home and took a cab to the Doubletree – Lloyd Center, Portland, OR. We checked into the hotel, and found lovely large welcome basket in our room, fresh fruit, fudge, nuts, wine, Zebra mans pocket hankie, Zebra ladies long scarf, wrist watch with crystal and black bead wrist band, two engraved wine glasses and other things. We were there for the Carcinoid / NET Patient Conference & Physicians Symposium Sept. 28 – 30, “Developing Partnerships: The TEAM Approach”. Carcinoid & Related Neuroendocrine Tumors (NETs). The conference was sponsored by: The Carcinoid Cancer Foundation, Inc. http://www.carcinoid.org and hosted by the Pacific Northwest Carcinoid Support Groups, Oregon & Washington Chapters.
Met and visited with Dr. Richard and Monica Warner, Nick & Pat Gerenday, Dave Vickery, Maryann Wahmann, Kari Brendtro, Corie Dean, Marilyn Burke, Bea & Rolf Lehming, Dennis & Win Robertson with Checkers the marvelous hearing assist dog, Dave & Nancy Hawkins, Kim Darrow, MaryAnn Hicks, Pam Powell, Nickolette Way, Maureen Coleman, Sallie Carroll, Marilyn Harper, Bisc Dennihan, Bev & John O’Neill, Sharon Miller, Kim Darrow, and other ole friends from coast to coast and Canada. I know I am forgetting some friends that I shouldn’t, but that’s who came to mind off the top of my head <G>.
Susan attended the NAAPNET (North American Alliance of Patients with Neuroendocrine Tumors) meeting and luncheon at noon. Later we registered and picked up our very nice large white notebooks with outlines of the physicians presentations and Howard’s speech for “caregivers, the Lance Armstrong “Live Strong” large notebook and information, and conference coffee mugs with coffee packets. In the evening we attended the very nice welcome reception and enjoyed visiting with ole friends and new friends.
Sept. 29, 2006 (Friday) and Sept. 30, 2006 (Saturday) – All days’ sessions, plus breakfast, lunch and mid-day snacks. Saturday morning Howard spoke on “Living With Uncertainty: Specifically For Caregivers”.
Immediately following this article see:
Friday evening we had a very nice dinner with Bea and Rolf Lehman. They gave Susan a personal tour of Berlin, Germany, when we were all there in Nov. 2004 for a Carcinoid meeting. Saturday evening we had dinner at the Portland Steak and Chophouse with Bisc Dennihan, Dave Vickery, Pat & Nick Gerenday, Jerry & wife (from KS) and us. Another enjoyable dinner and good visiting.
Oct. 1, 2006 (Sunday) – After breakfast at the hotel we checked out and took a cab back to Rissbergers in Gladstone. They were at a car show, which gave us time to unpack, sort things and get things ready for our “vacation” on the OR and CA coasts. After Glen and Joann returned home we all went to dinner McG_?_ Fish House for another good meal and visiting.
Oct. 2, 2006 (Monday) – Glen and Joann left for their schools and we soon were on our way. First we went to the Williamette National Cemetery where we located Howard’s Fathers ashes in the Crematory #3, Row 262. After paying our respects at the cemetery, we drove across the mighty Columbia River and headed south and west through Beaverton on US 26, ending at Cannon Beach, OR. We drove a short distance north to Seaside, OR, purchased gasoline, then returned to US 101 and headed south.
We visited Tolovana Beach State Park and had lunch in Cannon Beach in the Wayfarer Restaurant, 1190 Pacific Dr., where we sat by a window looking out at the beach and ocean. Later we walked on the beach and heading south viewing Haystack Rocks from various road side view area including Oswald West State Park high in the mountains with marvelous views down to Manzanita beach with multiple breakers rolling in. We continue through Manzanita to Nehalem Bay State Park for two nights, reservations made in July. Site A21 with electricity and in the row nearest the sand dunes, pine trees and beach. Excellent TV reception. In Seaside, Cannon Beach and elsewhere saw signs warning of Tsunami’s. Beautiful day, until 6:20 p.m. with a very light rain began. Before that we hiked to the beach / Pacific Ocean. Our total mileage for the day was 131.2 miles.
Oct. 3, 2006 (Tuesday) – Cloudy, totally overcast day with light rain off and on. We took a nice several hour hike through the pines, over the sand dunes and along the empty beach. Happy to find a “Moon Jellyfish” approx. 12 inches across. About 1 p.m. Susan saw and a doe and two young mule deer just across the road from our camp site. Susan took snapshots and Howard took video. The deer were enjoying ripe blackberries and we also ate a few of them.
Oct. 4, 2006 (Wednesday) – Woke up to bright sun. We left and headed south on U.S. 101. We viewed “The Three Graces” around Tillamook Bay then visited the Tillamook Cheese Co. where we took a self guided tour, ate ice cream and shopped for cheese and family gifts. We left U.S. 101 and drove the Three Capes Scenic Loop (Cape Mears, Cape Lookout and Cape Kiwanda), saw another haystack rock. We made stops at Cape Mears Lighthouse (located 217 feet above the Pacific Ocean, the actual lighthouse is Oregon’s shortest as only 38 feet tall), Anderson’s View Point and other view points. On the Three Capes Scenic Route we saw white and chocolate brown alpaca’s. After Pacific City we returned to U.S. 101, stopped at camp Wineama view point, and then drove on to Lincoln City. There we ate dinner at MO’s on Siletz Bay.
Continued south to Sea and
Sand RV Park, 4985 N. Highway 11, Depoe Bay, OR,
Oct. 5, 2006 (Thursday) – Light fog in the early morning. We headed south; stopped in Depot Bay http://www.depoebaychamber.org which claims to be the smallest boat harbor that is navigable in the world. We walk under the bridge to view the harbor close-up. Continued south to Cape Foulweather for the panoramic views and gift shop. Continued through Newport, south of the bridge went to the Oregon Coast Aquarium http://www.aquarium.org. We enjoyed their 200–foot underwater tunnel with a 360 degree view of the ocean habitats. We walked and took lots of photographs of seals, sea lions sea otters, and much more, a very nice facility. We ordered fish and chips, which Howard enjoyed but Susan suddenly felt too ill to eat. We returned to the Sea and San RV Park and about 3 p.m. as the sun broke through. Walked down on the beach to check on a deal seal. Great sunset, as only they can be over the Pacific Ocean. Our thermometer had broken (due to heat) in the motorhome so Howard walked over a mile south and back in order to purchase a new one. By 7:40 p.m. Susan had a temp of 101.9 and was dizzy. Drove 39.1 miles total today.
Oct. 6, 2006 (Friday) – Light rain / drizzle / fog began about 8:45 a.m. High tide of 9.1 feet at noon. Watched two surfers at high tide and Susan’s temp. almost back to normal. We left Sea and Sand RV Park a little after noon and headed south.
First stop was at Boiler Bay Wayside, where in Aug. 1971 we sat at a picnic table eating fresh Dungeness Crab with Cynthia, Scott and Shelly and watched a whale just off shore.
We passed Seal Rock and then drove on south to Waldport, then Highway 34 to the Mike Bauer history marker. Next we stopped at Yaquina Head State Park and the lighthouse. Howard climbed to the top of 93-foot-high Yaquina Head Lighthouse that stands 162 feet above sea level. Susan stayed at ground level and took photographs. Next we stopped at Agate Beach, south of Newport at Lost Creek State Park. We ate a mid-afternoon lunch at the new Howard Johnson’s in Waldport. In late afternoon the sun broke through the clouds. We returned to U.S. 101 and drove north to our camp site on the ocean at Seal Rock RV Cove, site 115 overlooking the beach and rocks. http://www.sealrocksrv.com/ Drove a total of 75.2 miles this day.
Oct. 7, 2006 (Saturday) – Bright sun with beautiful views of the ocean from our motorhome. Left Seal Rock RV Cove about 9:20 a.m. and drove south on U.S. 101. We made several stops for views, including just north of Sea Lion Caves to views hundreds of Stellar Sea Lions sunning themselves on the rocks below by the ocean. The caves are located 11 miles north of Florence and 38 miles south of Newport.
About 10:20 a.m. we arrived at Sea Lion Cave http://www.sealioncaves.com for another visit. We walked the trails along the cliffs and viewed the hundreds of Stellar Sea Lions sunning on the rocks or swimming in the ocean as it was a bright clear day. Later we took the elevator through the rock cliff to inside the sea cave (world’s largest sea cave, over 12 stories high). Through a window in the rock had great view of Heceta Head Lighthouse. Susan shopped in gift shop and purchased more gifts for family. After leaving Sea Lion Cave we drove to Devil’s Elbow State Park with more great views of Heceta Head Lighthouse; located on the west side of 1,000-foot-high Heceta Head, 205 feet above the ocean and the lighthouse is 56 feet tall. Drove a total of 48.2 miles this day.
We drove to the top of 803 foot Cape Perpetua Overlook, the highest viewpoint on the coast that is at the edge of the Pacific Ocean. We walked several trails where we had great views of the ocean and several “spouting horns” in Cooks Chasm below. This is Susan’s favorite spot on the Oregon coast as you can look far (65 miles) to the north and far (65 miles) to the south seeing the rolling breakers coming in. The Cape Perpetua Scenic Area is 2,700 acres a part of the Siuslaw National Forest. http://www.fs.fed.us/r6/siuslaw/. This is the location Susan visualizes for relaxation.
We arrived at The Adobe Resort and Restaurant in Yachats around 2:15 p.m., a bit early, so had lunch in the restaurant … sitting by a window with great view of the beach and ocean. http://www.adoberesort.com Made and 8 p.m. dinner reservation. Checked into room #323 (our favorite place to stay on the Oregon coast), facing the Pacific Ocean with unobstructed view of the sparkling ocean and clear blue sky. While Howard did business tax returns via the internet Susan visited the gift shop. We walked the rocks at low tide, looking at the various colored starfish, sea anemones, barnacles and other sea life. We enjoyed a beautiful sunset while eating dinner. Later after a shower Susan went through her email … 398 messages in the in-box and 898 messages in “trash”. Yachats is known as the gem of the Pacific coast; with about 635 people it is located at the mouth of the Yachats River. http://www.yachats.org
Oct. 8, 2006 (Sunday) – Set alarm for 6:45 a.m. as low tide at 7:15 a.m. – two feet higher than last nights low. We left about 8:30 a.m. for a wonderful walk along Oregon Coast Trail #804* going north from The Adobe. This is a very nice path, and very few people, bright sunny day! Had 11:30 a.m. reservation for the brunch buffet. During the afternoon took another long walk along same trail, as high tide was at 1:15 p.m. Saw lots and lots and lots of dolphins swimming in the ocean. Returned to our room, overlooking the beach / ocean, that had an electric fireplace. Howard took a short nap while Susan did on-line banking, checked her email, and ordered some books from Amazon. We had dinner and as before sat by a window overlooking the beach / ocean. Another lovely relaxing and enjoyable day.
* Oregon Coast Hiking Trail #804 -- This trail runs just outside your room. Before Highway 101 was built traffic used County Road 804 to get from Alsea Bay to Yachats. Travelers crossed the Bay on ferry. At low tide they drove six miles on the sandy beach from Waldport to the basalt bench where Yachats begins. There, they drove the 804 south to the Yachats River where the 804 curled inland and up the rich farm valley. Those who wanted to continue further south could ford the river or use canoes or other water craft. In the 1930's, Hwy. 101 was built and the 804 became a foot path. In the mid-1980's the high court ruled that the trail must be continued and 804 Trail North became part of the Oregon State Parks Department. Now that section extends from Smelt Sands south to the Yachats River.
Oct. 9, 2006 (Monday) Columbus, Day – Up at 6:15 a.m., it was dark, but some pink in the sky over the ocean by 7:15. Checked out and then had breakfast at The Adobe, again sitting by a window over looking the beach and ocean. Took a nice walk along Oregon Coast Trail #804 again. Susan would like to spend a winter month in the Yachats area some year to enjoy the views, hikes and to watch storms.
We left Yachats at 10 a.m. with bright sun and clear blue sky. We stopped at several view spots for Hechta Head Lighthouse, and Stellar Sea Lions. We continued south on U.S. 101. We stopped in Florence at a Fred Meyer for groceries. In North Bend stopped at a Myrtlewood Factory and Showroom / gift shop, again purchased some gifts. http://www.RealOregonGift.com Next in Coo’s Bay stopped at an Oregon Connection / Myrtlewood Outlet, and purchased a few items. It was in the mid to upper 70’s and was sunny all day. We observed the Oregon Dunes National Rec. Area that stretches from Florence south to Coos Bay. We visited the 65-foot tall Umpqua River Lighthouse south of Reedsport stands 165 feet above the ocean. About 3:30 p.m. we arrived at Bandon-By-The Sea RV Park with a nice cool breeze. http://www.bandonbythesearvpark.com/ Drove 102.3 miles this day.
Oct. 10, 2006 (Tuesday) – Sunny, clear blue sky. Left Bandon-By-The Sea RV Park around 9:30 a.m. Went to Face Rock. We climbed down steep steps to the beach; it was low tide, great rock formations and very few people. http://www.oregonstateparks.org/park_66.php We then drove through Old Town Bandon http://www.bandon.com and again viewed the 40-foot tall Coquille River Lighthouse. A herd of deer ran across the highway.
South on U.S. 101 stopped at a A&T Myrtlewood, 45683 Highway 101, Sixes, OR 97476 … pine needle and horse hair baskets by Myrna Austin, all original design. Susan purchased a gift and then a small woven pine needle basket for $150. http://www.aandtmyrtlewood.com This was the best shop of the trip.
Had very strong wind as we drove 6 miles out to Cape Blanco State Park and Cape Blanco Lighthouse on a point of land with reef and rocks on both sides of the lighthouse. Howard climbed to top of this lighthouse. Cape Blanco Lighthouse is the oldest standing lighthouse on the Oregon coast. It is 59 feet tall and sits 245 feet above the ocean. Back to U.S. 101 and south to Port Orford State Park for a hike and with many stops for overviews of the ocean.
We continue to Gold Beach, OR. Had dinner in the Port of Call Restaurant. Then visited Jerry’s Museum and Gift Shop http://www.roguejets.com on the south side of the Rogue River. Drove back across the bridge and then seven miles east along the north side of the Rogue River. Saw a large herd of elk and group of small mule deer. Checked in at the Four Seasons RV Resort http://www.fourseasonsrv.com arriving around 4:45 p.m. We camped in space #1 facing the Rogue River. Saw Great Blue Heron, various ducks and salmon going up river. Drove 85.6 miles this day.
Oct. 11, 2006 (Wednesday) – Clear, bright blue sky, no clouds. Approx. 50 degrees, walked to the TuTuTun Lodge http://www.tututun.com/ dock next door to Four Seasons RV Resort. Not enough water for the jet boat to pick us up at the Four Seasons dock. About 8:55 a.m. boarded a Mail Boat Hydro Jet boat for “The 64-mile Original Postman’s Run” Rogue River trip. http://www.mailboat.com This company was the original mail contractors. This time of year, with low water, can only go up river to Agnes, OR to deliver the mail. On the trip up river we saw: Great Blue Heron, Osprey, nests of both Osprey and Bald Eagle, black tail deer, elk, harbor seals, four river otters, mink, Bald Eagles. Had choice of where to have lunch: Foster Lodge, Misty something or Cougar Lane Lodge (located at the corner of Cougar Lane and Rattlesnake Avenue) 04219 Agness Road, Agness, OR.
We arrived at Cougar Lane Lodge at 11 a.m. We ate lunch on a deck over looking the Rogue River with both smooth water and ripples. We left Cougar Lane Lodge at 12:45 p.m. for the 32 mile trip back down river, arriving at the TuTuTun Lodge dock at 2:15 p.m. We again saw river otters, mink and a wide variety of birds on the return trip. The first Rogue River boat delivered the mail starting in 1985. Nice and warm without wind on the return trip. We knew to dress in layers. Before left in the a.m. had fixed rice, soup and chicken in the small crock pot.
Oct. 12, 2006 (Thursday) – Bright, sunny, clear day. Left Four Seasons RV Resort at 9 a.m. Stopped at the Mail Boat office/store to purchase photograph from yesterday’s trip. Continued south on U.S. Highway 101 stopping at these viewpoints: South Beach (of Gold Beach, OR), Buena Vista by Hunter Creek, Cape Sebastian, Pistol River, Arch Rock, Indian Sands, Cape Ferrato and Rainbow Rock. Bought groceries in Gold Beach, OR. Had lunch at the Brookings Harbor Marina. South of Brookings stopped at the natural bridges. Then U.S. 101 called Redwood Highway as crossed in to California.
We again visited Trees of Mystery at Klamath, CA, 16 miles south of Crescent City, CA on the “Redwood Highway”. We hiked the trails and rode the aerial Sky Trail. Enjoyed the many life size wood carvings and out front the HUGE figures of Paul Bunyan and Babe the blue ox. When we visited here in April 2003 it was raining and hailing, so we enjoyed this beautiful day. http://www.treesofmystery.net Continued south on U.S. 101 to Sounds of The Sea RV Park, 3443 Patrick’s Point Dr., Trinidad, CA, by Patrick’s Point State Park. Had WiFi and we had both laptop computers on once we checked in … checked our emails and cooked dinner at 9 p.m. Drove 114.2 miles this day.
Oct. 13, 2006 (Friday) – This was a day of rest, gray and overcast, most of the day couldn’t see the ocean surf down the hill from our camp site #SS2. Sun never did break through. More normal temps, highs here on the coast in the 60’s. We used both laptop computers today answering email. Howard downloaded pictures again from both cameras to the laptops. Checked my web site http://www.carcinoidinfo.info, there had been 239,268 “hits” or “visits” to my web site. We LIKE Friday the 13th!
Oct. 14, 2006 (Saturday) – Left Sound of The Sea Park about 9:45 a.m. in light fog and headed south on U.S. 101 The Redwood Highway. We then took CA Hwy 254, and again drove through the 32-mile “Avenue of the Giants”* and Humbolt State Redwood Park. We walked Founders Loop Trail and made many stops to walk and take pictures. There was early cloud cover but then it lifted and bright blue sky and sun. Had lunch at The Grove in Myers Flat, CA.
We took more pictures and continues south on U.S. 101 to Willits, CA, then 1 ½ miles w. on CA 20 to a “fancy” KOA campground arriving at 5 p.m. It was NOT worth the price for just an overnight stay. Their WiFi was only so so but Howard checked his email. Drove 168.6 miles this day.
Oct. 15, 2006 (Sunday) – Mist and fog in tops of trees but fairly bright although cloudy all day. Drove south on U.S. 101, crossed the Golden Gate Bridge in San Francisco then to the San Francisco RV Park on CA 1. http://www.sanfranciscorvresort.com/ We had site #1, in first row over looking the beach and ocean on a cliff/bluff. Drove 145.8 miles this day.
Oct. 16, 2006 (Monday) – Cooked breakfast and then stopped at a Safeway in Pacifica, CA. Upper fog and low mist, but made many stops to view beaches and Pigeon Point Lighthouse. Drove around Santa Cruz on Monterey Bay, enjoying the natural bridges, birds, views and sun. Continued south with more low fog. Ate lunch at a McDonald’s in Watsonville, CA. Checked in to the Cypress Tree Inn and RV Park (eight slots) in Monterey about 1:30 p.m. http://www.cypresstreeinn.com/ No rain, but still overcast. Drove 110.3 miles this day. http://www.rudyalicelighthouse.net/CalLts/PigeonPt/PigeonPt.htm
Oct. 17, 2006 (Tuesday) – Warm, clear blue sky and sun. We took a cab to the Monterey Bay Aquarium http://www.montereybayaquarium.org arriving about 9:50 a.m., M.B. Aquarium opened at 10 a.m. and we were there until 3 p.m. Enjoyed the feeding in the Kelp Forest tank at 11:30, the sea otters, penguins, young male great white shark, the various jellies and everything. We saw two films: 1) Saving Sharks and 2) Jellies. We left the Monterey Bay Aquarium and walked Cannery Row and the Coastal Trail. During our walk along Monterey Bay we saw six sea otters, many sea lions, many harbor seals, and a nice variety of birds. Had a nice dinner out on Fisherman’s Wharf at Old Fisherman’s Grotto, all good, but Howard thought the clam chowder was especially good. About 6:15 p.m. we took a cab back to our motorhome at the Cypress Tree Inn and RV Park.
Oct. 18, 2006 (Wednesday) -- Left Monterey 9:15 a.m. Susan had been on the 17 Mile Drive and Howard didn’t care so we passed by. We stopped for many views along CA Highway 1, Carmel River, and later Point Lobos Marine Reserve for photos. Howard went up steep steps in the hillside and met a buck deer (yes antlers). Bright sun, clear blue sky. We made many stops at turn out such as Hurricane Point. Visited the Point Sur State Historical Park Lighthouse, Pfeiffer Big Sur State Park with Redwood trees and a delightful creek http://www.parks.ca.gov/?page_id=570 we stopped several places along the creek. Drove further south then turned back north, stopping at the Big Sur Deli and store next to the Big Sur Post Office. Then to the Big Sur Campground and Cabins on the Big Sur River. Our spot #90 among Redwood trees. Many crows, squirrels, Blue Jays and other birds. No TV and no sewer hook up (don’t need it). We checked in about 1:30 p.m. Drove 45.0 miles this day.
Oct. 19, 2006 (Thursday) – Susan slept until 10 a.m. (13 hours), Howard up somewhat earlier. We walked around this large 51 year old campground. It has curvy roads, spaces for tents, RV’s, semi tents for rent and cottages for rent. Many Blue Jays and other birds. Took nap in the afternoon. We needed the day of rest by the river in the Redwoods. It was another bright, clear, blue sky day.
Oct. 20, 2006 (Friday) – Left Big Sur Campground and Cabins at 8 a.m. We made many stops going down CA Hwy 1. Many sharp curves and 15 to 20 mph places. Beautiful uncrowded coast … driving south are on the Pacific Ocean side of highway with sheer cliffs into the ocean … beautiful.
We were thrilled to see hundreds and hundreds of Elephant Seals on five beaches … http://www.elephantseal.org/ we had not know they were there, just north of Hearst Castle. http://www.parks.ca.gov/default.asp?page_id=1115 Next we went to the Hearst Castle visitor’s center, but did not desire a tour. We had lunch in downtown Cambria, CA. We arrived at LeSage Riviera RV Park in Grover, Beach, CA about 3 p.m., and were in site 121. http://www.lesageriviera.com Light fog started in about 4:15 p.m. Drove 121.1 miles this day.
Oct. 21, 2006 (Saturday) – Beautiful, bright, clear, blue sky day. Clam Festival and parade in Pismo Beach (connecting to Grover Beach). Howard walked to a 7-11 for milk. About 2 p.m. we walked the one block to Pismo Beach … cards drive on this beach. We watched sky divers with smoke and all of the activities. We had a mid afternoon lunch/dinner at Fin’s Seafood Restaurant.
Oct. 22, 2006 (Sunday) – Fog and totally overcast. Susan cooked breakfast. We left Grover Beach, got gasoline, and headed south on U.S. Highway 101. The drive was nice along the coast and then through sprawling, huge, metro Los Angeles area on US 101 until became I-10 east. We had lunch in a McDonald’s and about 4:45 p.m. arrived at Indian Water’s RV Resort, Indio, CA. It is part of Western Heritage of which we are members. But, this was the only time used any membership on the trip … most of them are a waste of money. Drove 313.7 miles this day.
Oct. 23, 2006 (Monday) – Nice bright day … enjoyed seeing the thousands http://www.palmsprings.com/services/wind.html of windmills for power in the Palm Springs, CA, area as usual. This was a wonderful trip, we enjoyed all of it and could have spent more time at a number of locations. Drove the 263.3 miles home to beautiful Tempe, AZ. Drove 3,465.3 miles on this trip.
Sept. 30, 2006 (Saturday) Howard spoke on “Living With Uncertainty: Specifically For Caregivers”.
** Howard’s introduction (we did not write this) followed by his outline and text of his actual speech.
Howard Anderson, better known in these circles as Sunny Susan’s Hubby, is a software engineer with an MS in Mathematics. He has written software continuously since 1965 and is the author of HandyAvi, software for astronomy, time-lapse, motion-detection, and meteor-detection photography using simple webcams. Howard is a retired Air Force Major, a Retired Motorola Senior Member of the Technical Staff, and an ex-Director of Software Engineering of Anadigm, a venture-capitalist-funded startup-company which folder after five and a half years of intensive effort. Howard is now engaged in his own startup company, selling software he has developed, without the dubious benefit of “vulture” capitalists.
Howard is happily married to Susan whom he hopes will be around for many years to come. He feels he owes a great debt of gratitude to the many fine doctors, who have through their extensive research and dedicated efforts, managed to keep her alive.
Howard’s Journey - A Caregiver’s Experience
Howard C. Anderson
Tempe, AZ 85283
I. Before the diagnosis
· First indication in 1987 – First time I had ever seen her throw up…
· 1987-1995 – Sporadic emergency room visits – Blockages
· Gall Bladder Surgery June 1994 – Finally, the answer!
· Nope. Not the answer
· Liver biopsy terror…
· Keeping her alive on Dairy Queen Milkshakes
· Gradual decline from 160 pounds to 98 pounds
· Enteroclysis – “Pump slowed down” – The blockage must be real…
· Surgery and Carcinoid diagnosis. Diagnosis took 8 years!
· I cry. They say cancer is curable IF YOU TREAT IT EARLY. I think she is sure to die soon since it’s been going on for 8 years… “Early” would have been 8 years ago…
II. After the diagnosis
· Susan does intensive research.
· Howard continues working to keep insurance going among other things.
· After 2 years of research, Susan discovers Dr. Warner.
· Dr. Warner prescribes Sandostatin and Interferon Alpha 2b. – Relieves symptoms! (I think Dr. Warner is why she’s still alive.)
· Breast cancer diagnosis 1999
· Liver resection in 1999
· Stable – according to periodic tests anyway
· Sandostatin LAR – I wind up having to do it…
· Type II diabetic diagnosis in Dec 2004
· Neuropathy – lost feeling in feet
Portland Carcinoid Conference
30 Sep 2006
Howard C. Anderson
I debated whether to do this because it is supposed to be from the viewpoint of a “caregiver”. Those of you who are familiar with Susan know that she doesn’t wait for anyone to “give” her care. She actively seeks it out. So I’m not sure that I qualify as a “caregiver”. I can talk about how her illness affected me and that might be relevant to other “caregivers”.
We had been married for 17 years before I ever saw her throw up. I think it was summer, 1987. We were in the car driving to a site up in the mountains in Arizona. I think we had had hamburgers and I thought maybe she somehow got car-sick due to the gravel road we were traveling on. I had no idea that this was the first indication of a very serious problem and that it would take another 8 years to obtain a diagnosis.
The next eight years (1987 through 1995) were punctuated by emergency room and hospital visits to clear intestinal blockages and attempts to determine the source of the problem. The blockages would typically clear, she would be discharged, and we would hope that maybe it wouldn’t happen again.
In 1994, I bought a 10” telescope. I had been interested in Astronomy from the age of 8 but never could afford anything bigger than the one-inch telescope my parents got me for Christmas when I was 10. Light pollution, even in Arizona, means that to see anything worthwhile, you have to drive at least 50 miles from town. Susan encouraged me to drive the motor home out into the desert so I could do astrophotography even when she was not feeling well enough to come along. In the past, we had always done these sorts of things together. I have always disliked going anywhere without her and without her encouragement I would not have gone.
She eventually had gall bladder surgery and we thought that the problem had finally been resolved. The doctor forgot to come tell me that they had completed the procedure and that she was OK. So I was pretty panicked after three hours with no word. After the surgery, there was some improvement but it was short-lived.
The doctors were involved through regular appointments every three to four weeks all through the last stages as she gradually got worse. They ran many tests, including a liver biopsy, and various blood tests trying to figure out what was wrong. No one thought to do a serotonin test even though I mentioned that she got “lobster red” on occasion.
She accompanied me on business to England. I worked while she took trains and busses and toured England even though she was suffering significant and unrelenting abdominal pain.
We are each other’s best friend so it was difficult for me to adjust to her gradually worsening condition. It was gradual though. So gradual that as we slowly transitioned to keeping her alive exclusively on Dairy Queen Milkshakes, the only thing she could hold down, it almost seemed normal. In a period of 6 months, November 1994 to May 1995, she went from 160 pounds to 98 pounds. The last month she was lying on the couch moaning in pain most of the time. Neither of us thought that the doctors would be able to find anything so she just toughed it out. When she reached 98 pounds, it suddenly dawned on me that this was becoming critical and, if it continued, she would surely die. The doctors, so far, had been unable to find anything. So in May 1995 I concluded that we must give it a more determined try so we again conferred with the doctor and he suggested enteroclysis.
Enteroclysis is where a tube is positioned beyond the stomach valve and liquid is pumped directly into the small intestine so that fluoroscopic imaging can be done. The first indication that they had found something was that the pump slowed down. This indicated some sort of blockage. Surgery then showed that the small intestine was almost completely blocked down to the size perhaps of a soda straw. The surgeon guessed that it was Carcinoid.
When he told me I think I cried because I was sure she was going to die soon. After having been sick for so long and then to get a cancer diagnosis to me meant that it was probably hopeless. They always say cancer can be cured IF YOU TREAT IT EARLY. In this case, it had been going on for 8 years or so! The doctor tried to get me to control my emotions. He thought if she saw me crying that it would have a
Surprisingly, when I saw her she was much happier about it than I was. She finally had a diagnosis and was already making plans about how to fight the problem! She had me copy the Merck manual pages related to Carcinoid and bring them to her in the hospital. The manual said she’d probably be dead in 2 to 3 years so that didn’t help how I felt.
I continued working at Motorola all through this time. An important part of this was to make sure our health insurance continued. Motorola had an extremely good health insurance plan. We were free to see any doctors anywhere without referral. It was good up to $2 million. (In a Motorola meeting, someone said that after that was exhausted; you should probably make an appointment with Dr. Kevorkian…) Motorola has since migrated to another cheaper plan so I guess we were really lucky with respect to timing…
When Susan got home, she immediately scoured the internet looking for information on Carcinoid. Very little information was found. The immediate problem, 33 inches of small intestine containing the primary Carcinoid tumor and six lymph nodes had been removed but that was not the full extent of its infiltration. (Liver tumors – They were undetected in the Feb 95 liver biopsy.)
She still experienced abdominal pain and diarrhea after the surgery. The abdominal pain was thought to be due to adhesions but we now know it was from additional Carcinoid tumors.
It took a couple of more years of research to locate Dr. Warner who, in my opinion, is the reason she is still alive. Dr. Warner prescribed Sandostatin in Feb 1988. In March 1999, Dr. Warner and Susan’s local oncologist placed her on Sandostatin LAR and Interferon Alpha 2b. She says Sandostatin “turned her life around” and gave her a “good quality of life again.”
In June 1999, Susan was diagnosed with breast cancer. That is almost a footnote. She again researched everything, did aggressive treatment and, so far, it has not come back.
In October 1999, Susan had a liver resection to eliminate Carcinoid tumors from the liver. A team of five surgeons resectioned the liver and removed everything else from the abdominal region that looked like or felt like Carcinoid. She had earlier received conflicting advice from different doctors regarding whether to do the liver resection. She again opted for the more aggressive treatment. I am guessing again that she would not be alive now had she not gone ahead with the liver resection.
I have tried to provide emotional and financial support throughout her ordeal. Currently, my main contribution to her treatment is administering a Sandostatin LAR shot once a month. One of my earliest memories is being in a hospital with pneumonia and receiving penicillin every three hours. When I have to give a blood sample, I grit my teeth and look away. I’ve never watched. However I have learned to do the Sandostatin injection. I have figured out how to prevent the needle from clogging. Once, when we were camping, we forgot to bring extra needles so I managed to do the injection without switching needles so I would have the second one for a spare if needed. I hate it when the needle clogs…
Susan has been essentially pain-free and diarrhea-free since October 1999 after her Liver resection surgery. Regularly scheduled tests seem to indicate that any tumors that remain are not growing so she is “stable”.
In December 2004, she was diagnosed as type II diabetic so she has had to manage that as well. In addition she has lost feeling in her feet (neuropathy) but seems to be dealing with that also.
I am lucky to have her. She is amazing…
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