Over the finish line 10/6/2010

I made it! This morning I had the surgery to remove my port-a-cath. With all the chemo, surgery, and radiation done, this was the last piece of the puzzle for me. On with life!

I'm on for Wednesday 10/1/2010

Today I go for an EKG, blood work, and chest x ray in preparation for surgery on Wednesday the 6th to remove my port. A year ago on October 7th, I had my first chemo. As an added bonus, last night was my last dose of coumadin. Once  the port is out, I won't need to take it anymore. WooHoo!

A different path 9/29/2010

Want to see something very cool? Check this out at stonebalancing.com.

All done! 9/28/2010

Today was my last Herceptin chemo. Unlike all the others, it only took a half hour for the drip to finish. It's all good. I was asked by one of the nurses if I'd learned any life lessons this past year. Truthfully? I can't say I have. I always knew that I could do anything I set my mind to. I know I have been through much more difficult times. I know I am so fortunate to have a family, and especially a husband that loves me. As ever I am me--bald, curly-haired, straight-haired, short-, long-, or in-between haired. The insides haven't changed. I knew all that before. All the past year has done was to confirm what I already knew. I do look forward to getting my life more completely back. It will be strange (in a good way) not measuring my life in 3 week increments, my reality for the past year.

Next up is a meeting on Thursday with the surgeon who will remove my port. If it were my decision, I'd have him take the port out on Thursday afternoon. But I'll have to get into the surgical schedule. I should know when it can come out by Thursday.

Follow ups with the oncologist will be every 2 months to start. I just had a mammogram (clean), and will have an MRI in February (alternating every 6 months). Other than that, no other tests will be done. My recent blood work was clean, too. So, soon, I will bid this chapter in my life adieu. Onward...

Only 1/3 more 9/8/2010

Yesterday I had my last full Herceptin infusion. Hard to believe it's been a year since diagnosis. I have one more partial infusion to go--on the 28th, and then I'll be done with it. The last infusion will only take 1/2 hour instead of the usual 1.5 hour hookup I usually get. Some doctors dispense with the last treatment, but my doctor is a stickler for protocol. Herceptin: good to the last drop.

I have an appointment with the surgeon 2 days later, at which time I'll set a date for the removal of the port. It can't be anytime soon enough. I can feel the port and the connecting tube (connects to my vein--see a good picture here) just under my skin. It will be a blessing never to need it again.

Living my life 8/26/2010

I got the results of the chest xray: clean. I got the results of my mammogram: clean. I got the results of the CA15-3 test (cancer marker test): clean. All I have to do now is be vigilant. I have one more full chemo to go, and a short infusion on the 28th of September. After that, I'll get the port removed. That's when I can really look back on cancer and say : Good riddance.

But no matter what the future may hold for me, I know that I can handle it. Life is sweet.

Spots 8/20/2010

Since the last time I posted, I have had another visit with the oncologist and another Herceptin infusion. When I meet with the doctor, I usually bring a list of things to discuss that I've written down, so I won't forget to ask. On this week's list were 3 particular issues. When will my last Herceptin infusion be, and when can I get my port out? And lastly, what are the purple spots (they look like small bruises) that pepper my right leg? It turns out that while I thought that I only had one more chemo, I have 1 1/3. I will go on 9/7 for my last full treatment (1 1/2 hours), and again on the 28th for 1/3 of a dose (only a half hour). I have to set up a time for the surgery to have the port removed. So I should be port-free by middle of October at the latest.

As far as the purple bruises, she had no idea. "Let's just wait and see what happens". As a matter of fact, by Thursday (my appointment was on Tuesday), the bruises appeared to be fading. But lo and behold, I now have bruises appearing on the other leg. It's the darndest thing: this is not a skin rash, but small, pencil-eraser sized bruises. Where will they go next?

The Arimidex is still the source of regular hot flashes, not too bad to deal with. But now to get a full night's sleep, I have to take Benadryl before I go to sleep. I fell asleep the other night without taking it, and even though I was very tired when I went to bed, I woke up at 3:00. Sleep disruptions are a side effect of Arimidex. But the Benadryl (the PM part of Tylenol PM) works pretty well to allow me to sleep right through.

Yesterday I had a blood test for my Coumadin level (3.06), and also a CA15-3 blood test. Curious as to what that was, I googled it to find that it is a marker for breast cancer. It is given to monitor the response to treatment of invasive breast cancer and to watch for recurrence of the disease. Needless to say, I'll be watching for those results.

All in all, I feel great!

Back to Reality 8/4/2010

Well, back to reality... In the last week I had a blood draw and an Echo Cardiogram, and am due for another blood draw tomorrow. I still don't have a stable INR (test level to determine how thin my blood is, to prevent further clots). I did try to keep a consistent diet while on vacation. Oh well, only 1 1/2 to 2 more months of Coumadin to go. Then it's OUT with the port, because I'll be done with the Herceptin. I've been very good with wearing my compression sleeve, and the glove when working out or hiking. I even wore the 2 of them when hiking at Arches and Canyonlands with heat up into the 100s. Lymphedema is minor. I must say that the humidity back home has been a blessing for my eyes, if not my body. Out west, with 4% humidity, my eyes constantly watered and stung from the dryness and brightness, to say nothing of the wind. My eyes feel much better now. while I do have some measly, straggly little eyelashes, no one's going to mistake me for Brooke Shields after Latisse. The hair is coming back in kind of funky. It's mostly gray, and right now, it's about an inch long--still not enough to braid, or put in a pony tail...

I started the Arimidex on the 26th. I'm expecting the best, and no problems with this stuff. I feel great, and am moving on with life.

Back home, July 26, 2010

I can't believe that the three weeks are gone! From St. Louis to the Plains, to Denver and beyond, it was an amazing trip. Impressions?

The Gateway Arch is cooler than I thought it would be. Standing at the foot of it, you really get a sense of size and proportion. It's situated so the view at the top is east to west, the gateway to the west that Lewis and Clark saw.

The plains are incredibly beautiful: green, rolling hills and forever sky. Can you just imagine the pluck it took to pick up your life, be dropped off by the wagon train in this country, and realize that your new life starts HERE. Here's a shovel.  There's the plains, with sod that has roots that are several feet thick. Build a house from... what? No wood. Sod. I am thankful every day for the courageous men and women who built this country.

Staying at Larry and Rose's was fantastic. What a great time, talking, laughing, crying, eating, drinking...How do people make it without family?

Rocky Mountain NP is overrun. It's proximity to the Denver metro area makes it a mecca for those who want a weekend in nature. We tried unsuccessfully  to take a few trails, because the parking areas for those trails were full. Man, it's windy in the alpine areas of the mountains!

Arches and Canyonlands are spectacular. Maybe it's that in the silence and the vastness of the landscape, in the blue, blue, sky, in the blinding brightness of sunlight, in the contrast of red rocks and blue sky, you get a sense of the scope of time and space.

The Tetons  are majestic, and when you get away from the crowds, they are a sensory delight.
While the long drive across Kansas and Nebraska is really a LONG DRIVE, it's hard not to be entranced by the rippling waves that run across the corn fields in the wind, and the big swath of sky to which you are treated.

We were surprised to see the warning signs on the roads around Jackson, WY that proclaim "No snow plowing between 9 p.m. and 5 a.m." We can't imagine how that policy would ever fly in NH.
_______________________

Several days ago, I said that we were going to compile a "bad parenting" list. Here's are some that make our top ten:

1. The father who got angry at his 3 year old for spoiling his hike.
2. Parents who drag babies into uncomfortable situations--i.e. onto steep trails in hot weather.
3. Parents who allow their kids to go on long hot hikes with no water, and wearing flip flops.
4. Rude kids. 
5. At a restaurant in Jackson, we noted this phenomenon: parents who were seated separately from their children. And I'm not talking teenagers. One party of 6 adults sent the 2 children, about 8 and 10 years old, to sit at another table across the restaurant. In another instance, 3 young boys, maybe 6, 9, and 11 years old, came to sit at the table next to ours. The youngest proceeded to slide left and right on the bench seat. When Ray spoke to the kid, the child was shocked--but he stopped. The kids had money for their dinner. There were no adults in sight. Bear in mind that this was not a fast food joint, but a regular restaurant. Whatever happened to family dining? How are kids supposed to know what is proper behavior in public?
6. On the subject of restaurants... We stopped at a pizza place in Jackson that had a salad bar. We watched as a large group of people were ushered to seats at about 8:30 p.m.. It appeared that there were 2 families, 2 sets of parents with 2 kids each. The father of one family went directly to the buffet before he was seated, piling his plate high. His kids then sat and watched as Dad ate. Then Mom promptly went to the salad bar and filled a plate for herself, the children still unfed. The parents ate while the kids watched. By the time we left the restaurant, the kids still had not eaten, although they had ordered food, and Mom and Dad had been to the salad bar 3 times. Are we the only ones who find this behavior on the part of the parents selfish?
7. Again with the restaurants... Small children who run wild in the restaurant are a given.

But when all is said and done, it was a fabulous trip. Final numbers show that we drove 6,189 miles, bought 221 gallons of gas at an average of $2.712/gallon (most expensive in Illinois), averaged 28 mpg, and had 23 days of glorious renewal.

I will let you know when photos are up, and will put a link on each respective day's blog so the pictures make sense.

Love to all...

The secret to living the life of your dreams,
is to start living the life of your dreams, at once,
to any degree that you possibly can. 
Mike Dooley

Beginnings July 24, 2010

Arrived at Alex and Jenna's in the early afternoon. The sky looked ominous, so after a beer, we decided we'd better get out to take a look at the lot where their new house will be built before the torrential rain came. It's in a large subdivision south of Rochester, not too far from RIT. Their lot is the second from the end of the street, and across the street is a pond (photo at the right). (The view up the street is below.) We toured a model that is smaller than theirs, and the master suite walk-in closet is about as large as the bedroom in our first apartment! It's 3 bedrooms and 2 baths with a 2 car garage. If all goes well, they may be in their home by some time in October. We're so excited for them!

Elkhart, IN July 23, 2010

Up early this morning to head to Elkhart, IN, about 2 hours and 20 minutes from Joliet, IL. Our first stop in Elkhart was Ruthmere, a mansion built on the banks of the St. Joseph river that reflects the lifestyle of an affluent midwestern family in the first decades of the 20th century. Albert and Elizabeth Beardsley built this home in 1908. They named this place Ruthmere for their daughter, Ruth, who died in infancy. "Mere" refers to the river. The home was designed by an early associate of Frank Lloyd Wright, and was meticulously restored inside and out. Every last detail has been attended to: all the silk wallcovering was custom matched by a firm in Paris. The plaster ceiling decorations were all cleaned and restored. Mahogany paneling, hand carved embellishments , and silk and lace window treatments all looked brand new, as if the family had just left. Hand-painted ceilings and wall murals were all cleaned and restored. Very cool place. The tour guide could have added a bit of oomph to her presentation--she read from her notes at times, but the home itself was the star.

Then we moved on to the RV and Motor Home Museum in Elkhart. The RVMH museum houses vintage trailers and motor homes from 1913 up to the 1970s, a hall showcasing the latest current models, an Exhibitors Hall where industry supply firms tell their company story, and the world's largest library of RV and manufactured housing related literature and photos. We saw a unit that was made to fit inside a truck bed, early motor homes that included wood stoves, the first Airstream model and much more. We did stop for a while to check out the new models, having picked out our favorite, The Winnebago Outlook, a while ago. It was well worth the stop.

With Tuesday's chemo and work coming up, we pushed east. We decided against heading down to Pittsburgh to see Fallingwater, a stunning Frank Lloyd Wright house. The drive down would be long (4 hours down), and the tour was only an hour long. Next time we're down in that area, we'll surely stop in.

We stopped for the night in Amherst, OH, and tomorrow, we will stop in to see Alex and Jenna, and hopefully get to see the site of their prospective new home.

The humidity is thick here, and the thunderstorms come in and leave quickly, only to be replaced by another storm in short order. We know we're getting closer to home!

No Longwood Gardens, July 22, 2010

We stopped today in Omaha, NE, to visit Lauritzen Gardens, Omaha's Botanical gardens. While a pleasant place, we wondered where all the flowers were. Many of the flowering bushes were past prime, but you would think that in the midst of summer, there would still be a lot of flowering going on. What we saw was mostly green grass and common trees, and a rose garden. Our back yard has more flowering going on that this. There was a display that featured the activity of model trains, continually traveling through miniature communities, landscapes and countrysides, a nod to the importance of the railroads to Nebraska.
We took a small trail that purportedly offered expansive views of the gardens. There were many tall trees blocking the view that used to be there. So if you're ever in Omaha, you could probably skip this place.

The afternoon was spent driving through Iowa and part of Illinois. We will spend the night in Joliet.
We are definitely back in the humidity. Back in Utah, we experienced 4% humidity, and my dry eyes were continually irritated. Here in Joliet, the humidity is 77%.

Pioneer Village, July 21, 2010

Today we went to Harold's place. Harold Warp.

Harold Warp was president and founder of Warp Plastics, a Chicago-based manufacturer of window screening material such as Flex-O-Glass, Glass- O-Net and Red-O-Tex. If you haven't heard of any of these products then you're obviously not a Midwest chicken farmer, for it is these farmers who bought Warp's products and made him a millionaire.

And what did he do with his millions? He didn't buy fancy cars and swimming pools. He bought his hometown schoolhouse, his hometown church, an old depot, fort and land office and other places of no particular historical significance, and stuck them together in his Pioneer Village. Warp's collection now comprises over 25 buildings, including the oldest merry-go-round in the United States. It is the largest private collection of Americana, a monument to American ingenuity.

There are more than 50,000 items on display. The overstuffed nature of the place is one of its charms. You can return for a second or even third day on the same admission if you need the extra time to take it all in...
Harold Warp has dedicated the 100,000 square feet of his Village to the period between the years 1830 and 1960 -- a period in which he believes America made its most important inventive strides. The best part of the collection is not actually the collection itself, but the stories about the objects, which were all written by Harold himself. Although the objects themselves ARE cool: the first snowmobile (built in NH), the oldest Buick in existence, the first motor home (all 16,000 pounds of it built on a 1939 truck frame), and SO much more. They give the visitor a unique insight into American tenacity and creativity. The man who brought this all together was a genius, and it's unbelievable that he isn't more widely known. He created the first cling wrap (Jiffy Wrap), and the first plastic garbage bags. Check out the company--it's still around. Pioneer Village is a wonder. It's worth the trip to Minden, Nebraska.

Heading east, July 20, 2010

On the road  before 9 a.m. Flat green valleys turned to flat sagebrush valleys, which turned to flat farmland in Nebraska.

We stopped briefly at a monument to the Lincoln Highway, the east to west highway across the US. We hadn't realized that the first highways were privately built, and then publicly built and maintained.

We're staying the night in North Platte, NE after about 10 hours on the road. The motel operator told us about a great little diner up the road, locally run and single-family owned since the 1930s. The waitress greeted us and asked us if we were just passing through the area. I replied in the affirmative, and asked how she knew. She said she had never seen us there before, and just assumed. She knew all the regulars and didn't recognize us. Great little hometown place. Only in the heart of America would you find a public diner with a large christian cross on the wall prominently displayed.

Grand Teton Day 2, July 19, 2010

As soon as we had arrived at Teton the other day and looked at a map of the park, both Ray and I knew immediately that there was one area of the park that we would definitely visit. It was the Laurance S. Rockefeller preserve in the southern part of the park. The site was originally known as the JY Ranch, a dude ranch. Starting in 1927, John D. Rockefeller, Jr. purchased much of the land in Jackson Hole for the creation of Jackson Hole National Monument and the expansion of Grand Teton National Park. But he retained the 3,100 acre JY Ranch as a family retreat. Over the years the family gave most of the ranch to the national park. Laurance S. Rockefeller donated the final parcel in 2001. The donation came with special preservation and maintenance restrictions, with the vision that the preserve remain a place where visitors can experience a spiritual and emotional connection to the beauty of the lake and the Teton Range. (The estimated value of the site reclamation and restoration, including the value of the property is $160,000,000.)

This parcel is situated down a narrow scenic road from the aptly named town of Moose. As we drove down this road, we came to an area where many cars were parked along both sides of the road. Uh, oh. Animal sighting for sure. We stopped as well when I noted that there were moose in a shallow creek up ahead.In fact, there were 3 moose--a cow and 2 calves, one older than the other. The younger calf may have been born this past spring. Some people who had also stopped to view the moose lived in the area, and were familiar with these 3. Apparently the mother wanted to chase off the older calf to an independent life. When the older calf approached the younger, the mother charged the older, trying to chase it away. Wild Kingdom here before us! Marlin Perkins would have loved it!

We then moved on to the preserve. (Further down the road, there were more moose by the side of the road.) In contrast to some other parts of Teton, the LSR preserve is comparatively lightly visited by our experience. We first stopped in the Visitor Center, a treat all by itself. The building has received top honors for its "green" architecture, Having been built with mostly recycled materials, and with an eye to maximizing natural resources. While the building itself is beautiful, the displays inside were in perfect harmony with the spirit of LSR himself. Not a lot of words and puffery, but simple displays that honor and exalt nature. In the main hall, there were 4 LCD panels in a darkened room on which video vignettes of nature sounds and sights were displayed. A large internally lit "mosaic" picture of mountains reflected in a lake was made of thousands of smaller nature pictures. Absolutely stunning. A wonderful reading room completed the center. We tore ourselves away from this wonderful place to explore the outside.

The trails were peaceful, heavy with the scent of pine, the sound of rushing streams, and lined with columbine and lupine, a treat for the eyes, ears and nose. every so often, we would come upon a snow-capped mountain view. Can you tell that we loved this place?

After walking about 4 miles of trails, and a brief stop back at the Visitor Center, we went back to the Teton Visitor Center for suggestions for a smaller hike to complete the day. The ranger there suggested that we drive up to Two Ocean Lake, where a trail led into meadows where the wildflowers were at peak. A 35 minute drive that took us up a bumpy dirt road led us there. The trail started in woods and opened up to an expansive meadow carpeted with pink larkspur and balsamroot. All along the trail that followed were wildflowers. But where there are flowers, there are bugs to pollinate them. LOTS of bugs. Mosquitoes, flies, bees, wasps...The meadows were gorgeous as we looked down to the lake below, but--sweet nature or not-- we turned around to go back to the car.

Reality set in as we realized that our clean underwear supply was dwindling, so we went to find a laundromat in Jackson. Although I had a large supply of quarters on hand, the one we went to had a unique system we had never seen. You insert $1, $5, $10 or $20 bills into a machine, and select the amount of wash/dry credit you want. The machine spits out a "credit card " which you insert into the washer or dryer. Each wash or dry transaction debits the card.

Wash done, we decided to have pizza for dinner.

What a great day!

Grand Teton, day 1, July 18, 2010

Headed into Grand Teton Park this morning, and greeted by the sight of those incredible mountains with a clear blue sky and puffy clouds as a backdrop. Although the day started cool, it promised to be a warm day.

We decided to head to Jenny Lake and take the boat shuttle across the lake. The photo at the left was taken from the boat. There are several trails there, and we opted for one that goes into a canyon between the mountains (Cascade Canyon trail). The trail followed a rushing stream, then headed uphill for the first mile to an expansive view of  the Teton valley across Jenny Lake. From there the trail leveled out as it headed between the mountains. The photo below is from the Canyon trail.What fabulous views of the sheer walls on both sides of the canyon!

On the trail, we decided that after the trip, we would have to compile a list of "bad parenting" behaviors that we were privileged to witness during these 3 weeks. This trail hike offered us a great one. As we were descending the trail, we noted a little girl, no more than 3 or 4 years old, with reddened face, struggling to keep up with her dad and older brother (maybe 11 or 12). You could clearly see that she was at her breaking point (the trail was getting a lot steeper), as she finally started to cry that she wanted to be with her mommy. We continued down the trail as they ascended. Soon after we had passed them, we saw the little girl, father and brother descending, the little girl ahead and smiling broadly as she returned to her mother waiting below. I smiled when I saw her, and commented to the father how happy she looked to be going back. Clearly exasperated, and upset with his daughter, he snapped that HE'D "be back tomorrow". He was mostly concerned with his own entertainment, and not with the physical or emotional needs of his child. This was one case of many we saw, where the parents were dragging toddlers (and babies!) up a steep incline. On the first part of this same trail, we heard a baby wailing. Hey people! Figure out what are appropriate activities for your children, and things that you will enjoy too! Don't just drag the kids to the stuff you are bound and determined to do, with no concern for their well-being and contentment.

At any rate, after this walk, we drove up to Signal Mountain, a narrow, winding road that takes you up to a fantastic viewpoint of the Teton valley. We walked a bit to the viewpoint, and stood to admire the awesome view, when, unbelievably, the only other person there whipped out her cell phone and called someone. She proceeded to have a lengthy conversation, discussing where she was, and what she done today. In the face of that quiet beauty, her foremost thought was to call someone. Yikes!

After a few more stops at viewpoints, and a lot of picture-taking, we opted for a restaurant dinner tonight. Back to our cabin to relax and enjoy the evening...

On to Wyoming, July 17, 2010

Up early again today, with Jackson, Wyoming our destination, about a 9 hour ride. We'll be here til Tuesday morning. The ride was scenic, and the weather at our destination decidedly cooler.

Our cabin is on a bluff over the Snake River--very picturesque. We checked into our cabin at about 5:00, went to dinner at a restaurant in Jackson, and then laid low for the rest of the day.

Canyonlands, July 16, 2010

First things first. Happy Birthday, Jenna! Happy Birthday, Annette!

Another hot, dry (humidity at 4%) day greeted us this morning. Today we are headed to Canyonlands National Park, about 35 miles southwest of Arches. Again we got up early, having taken our showers last night. We were on the road before 8:00 a.m. The drive south was unremarkable--open desert. Canyonlands is a park that is divided into 3 sections by the Green and Colorado Rivers: Island in the Sky on the northwest, Needles to the southeast, and The Maze to the southwest. Alex, Ray and I had last visited in the Needles section. This time, our trip took us to Island in the Sky.

On entering Canyonlands, everyone is warned to take lots of water because there is no water in the Park after the Visitor's Center. After a brief stop there, we set off to explore. First stop was Mesa Arch. The short 1/2 mile trail gave no clues as to the fantastic view we came upon at its end point. Mesa Arch frames the White Rim plateau, Colorado River and canyons 2000+ feet below us. From that vantage point, you take in spires, rock formations, and the plateau below. Since we were there early, we had that special spot to ourselves. we sat in absolute silence for a while relishing the complete peace of the place. Someone had described it as "the perfect silence".

Next stop was at the very end of the paved road, the aptly named Grand View Point. This 2 mile round trip takes you along the mesa top ridge to expansive views of the plateau and canyons below. What an amazing place! We are thankful that this park was set aside in 1964. Prior to then, the land had been used by cattle ranchers and uranium miners. At the top of the Grand View Point trail, we happened upon 2 couples we had met on the Arches Devils' Garden trail.

Even though the trails we had taken were not long, we were drinking a lot of water. We decided that we didn't have enough water to do any more of the longer hikes in the park, but stopped at all the overlooks along the road. These were incredibly scenic views by themselves.

Back at the Visitor's Center later in the afternoon, we listened to a young interpretive ranger talk about the park. Her presentation was interesting and informative. She showed photos of one point in the park as it is normally, and the same point right after a heavy rain. Before, it looked like a rock cliff, after, there was a huge waterfall roaring over the cliff. She also showed us photos of the confluence of the Green and Colorado Rivers, only able to be viewed from a plane, or an incredibly tough 16 mile hike. Where the 2 meet and the rivers flow together, one is green, the other brown, and the waters do not mix until a few miles downstream.

After this, we decided to go back to the cabin and return to Arches in the evening, when we took the viewpoint trail to Delicate Arch. That is a favorite sunset destination. The wispy clouds and blue, blue sky as the sun set were beautiful. With this place, you find yourself overusing the words: fabulous, fantastic, and wow.

Back to the cabin for evening showers and another episode of The Pacific.

A few side notes:
We found out what the bugs were that were raining on the windshield the day we arrived in Moab. They were tamarisk beetles, specifically brought in to eat and hopefully kill the invasive tamarisk trees that grow along the Colorado River.

The pool that was in the middle of the primitive trail at Devils' Garden was alive with hundreds of large tadpoles is called a pothole. We thought that it was weird that it had water in it, but found out that this is one of the largest in the park. In spring it can be 6 feet deep. Now, it was maybe a foot deep. The ranger was surprised that it hadn't dried up. Even when dry, these potholes hold life that springs back when the rains come. Amazing!

Hot as hell in the Devil's Garden, July 15, 2010

We were so smart. Last night we took our showers, and this morning we got up very early, 6:00 a.m. We ate breakfast, washed up, and left so that we could arrive at Arches very early and get a long hike in before the blasting heat of midday. Good thing we did.

Unfortunately, we had to stop at the visitor's center to get a trail map, and that didn't open til 7:30. But we were able to drive down to the Devil's Garden, the northernmost trailhead in the park. We started out on the trail at a comfortable 75 degrees, sunny, with a nice breeze. The day, and the scenery were absolutely fabulous. The first part of the trail down to Double O Arch was really pretty easy, but then we made the fateful decision to try the primitive trail that makes a circuit around the main trail. The Primitive trail is much more out in the open, with narrow ledges to traverse, and some scrambling on slickrock. (Alex, this is the trail that Dad slid on the slickrock down to the trail below after it had started to rain--remember?) By the time we had started this part of the trail, we had been hiking for about 3 hours. So down the trail we went.

 And up the temperature went. And down our water supply went. With my compression sleeve and glove on, I really thought I would melt. Some of the trail is like beach sand, and trudging uphill in 100 degree heat was not really what we wanted to be doing.We'd walk 1/10 mile, then stop in the meager shade provided by a stunted tree, and take a sip of water. The another 1/10 mile etc. In several places on the trail we had to slide down rocks or figure out how to get around them. In one place, we had to navigate around a pool that had thousands of tadpoles in it (like something from a Steven King novel--Where did they come from in the middle of the desert?) I did take a minor toss there.We encountered others on the trail whose question was the same as ours--"Do you know how much longer the trail will go?" Noone really knew. There were no markers on the trail to tell you exactly where you were in relation to the start or finish. But, at any rate, we finished, arriving at Landscape Arch, which meant only 1.7 miles to go on an easier path. When we FINALLY finished (a total of 6.6 miles), we sat in the car with the air conditioning blasting, chugging cold lemonade from the cooler we had prepared. That lemonade was THE BEST!

Once we recovered from that, we moved on to the Windows area of the park, where there are several other arches. We sat in the car (AC blasting, of course) and feasted on PB&J (sound familiar, Alex?) We then hiked up to the Windows arches and the Turret arch. Other than a few obnoxious kids on the trail, it was beautiful.

By then, we were ready to relax. We headed back to the cabin and had a cold drink. Ray convinced me that a dip in the pool would be just the perk me up I needed, and even though I didn't bring a suit, I wore some light shorts and  a t-shirt and took a dip. Wow! That was just the ticket! By the pool, the thermometer read 100 degrees in the shade. The air is so dry (8% humidity), that the pool is heated, and when you get out of the pool, you  actually feel cold--instant evaporation.

Back at the cabin, we had dinner, watched a video (episode 2 of The Pacific), and decided we'd had enough for the day.

Mountains to Red Rocks, July 14, 2010

Packed up our stuff and headed for Moab, UT, the home of Arches National Park. What a ride! Starting in the heart of the Rockies, we drove south on Route 7 to 72 from Estes Park through some small towns and spectacular scenery on a curvy 2 lane road. Ray was not happy when we found ourselves behind someone doing 15 miles less than the speed limit. They were from Iowa, probably flummoxed by the hilly and winding roads. On the way, we went through one town, truly in the middle of nowhere that was chock full of what appear to be brand new casinos--Black Hawk, CO.

When we reached Route 6, we headed west and followed a narrow, steep walled canyon to I-70. From there we climbed to about 11,000 feet to the Eisenhower Tunnel. And then, as we descended, I-70 took us by all the ski towns--Vail, Copper Mountain, Dillon and more. As we left the mountains, we talked about how Lewis and Clark must have been amazed (and dismayed) to realize that their task was not just to surmount one mountain, but 500 miles of them.

When we passed Glenwood Springs, we found the scenery much changed. The lodgepole pines had been replaced by the scrubby pines and bushes of the high desert. Rather than follow the directions mapped out by Bambi (our GPS), we decided to take the scenic 54 mile route through Cisco (now a ghost town), down Route 128 along the Colorado River. What a ride! You start out through miles of flat, wide open country, and then you cross the Colorado River, and enter red rock country. Oh my God! What a sight! The river is bounded on both sides, for mile after mile, by towering red cliffs and spires. I can't imagine having lived without seeing this beautiful part of the country.

As we got out of the car to take pictures along Route 128, though, we were swarmed with some type of fly. There were so many in the air, that when we got back in the car and sped away, the bugs sounded like rain drops hitting the windshield.

Once we had checked into our cabin and turned on the AC (it was in the high 90s), we ate dinner, and decided to take the short ride into Arches. It was 8:00 by then, and the sun was getting lower in the sky, making the rock walls glow red. We just drove in about 5 miles, took some photos, and then decided to come back early tomorrow to do more exploring.

In Alpine Country--July 13, 2010

Another bright sunny day greeted us this morning, and after breakfast, we set off to traverse the Trail Ridge Road and its trails. Trail Ridge Road is the name for the stretch of road that traverses Rocky Mountain National Park and is the highest continuous highway in the United States. The highest point on this road is 12,183 ft. As we ascended, it got much colder. We stopped at one of the trail points at about 11,000 feet. After donning jeans, sweatshirts and windbreakers we set off. While the views were spectacular, the wind was blowing at about 50-60 mph. It was hard to stand up, never mind pick your way around the rocks strewn upon the trail. That wind was the main factor in the fall I took on the way back down the trail. As I hopped from one rock to the next, I was literally blown off my feet. Luckily, I landed on my knees, and broke the fall with my left hand. I have a goose egg on my left knee, and a growing bruise on my right knee. After this, we decided to avoid the higher alpine trails.

We drove most of the length of Trail Ridge, stopping now and then to try a short trail. Several times rain and thunder punctuated the afternoon. Later in the afternoon, we stopped at the Holzwarth Historic Site, a former dude ranch located within Rocky Mountain National Park. There are several buildings still standing, and rangers there to offer more background on the site.

On the way back east on Trail Ridge Road, a narrow, winding road, two cars appeared to be racing each other, passing on double yellow lines, and around curves. Idiots are everywhere.

We had a glass of wine back at the cabin and shrimp salad for dinner. Except for the toss I took, it was a fine, relaxing day.

Rocky Mountain NP, July 12, 2010

Today was our first hiking foray of the trip into Rocky Mountain National Park. We had planned to do a longer hike in one particular area of the park. We drove down a dirt road to the trailhead, and checked the sketchy map at the kiosk. OK, we can do this--5.2 miles. Backpacks on, water bottles filled, some snacks in our bags. Off we go. But after about a half mile, we failed to see the cut-off we should have. We backtracked, looking for any trail sign to point us in the right direction. No luck. No signs. Not wanting to get lost in the wilderness, we went back to the car to consider our options. Neither one of us felt comfortable hiking unmarked trails. We then stopped in the nearest ranger station, and were told that they didn't have maps for that area, that very few people ever went there because the trails were poorly marked. She told us to just head uphill and that we'd come to Trail Ridge Road. Right. So our next decision was to try a trail that goes out to one of the many lakes in the park.

The first leg was 1.7 miles out, that took us to a pool where the stream rushes by. At this point, we decided to continue to Fern Lake, another 2.1 miles along. Feeling good, and enjoying the cool breezes, and heavily scented piney air, we said, "Sure, no problemo". we started up the trail then.....it started to ascend. Not just a little, but A LOT--1338 feet, to be exact. The trail from the pool--all 2.1 miles (4.2 miles round trip) of it was a steep incline covered with rocks and roots. Essentially, the trail ascends a hill (mountain) with switchbacks. Every time we'd round a corner, I'd take a peek up the next stretch, and mutter to myself "Oh S***!". On the return trip downhill, we were surprised when a large moose crossed the trail about 20 feet ahead of us. Completely unconcerned, it just lumbered by. All in all, it took 2 hours 40 minutes to go up, and about 2 hours to come back. The picture above was taken at the top of the trail at Fern Lake, just before our descent. Yay! We made it!

I'm wiped.

We made a delicious dinner of ham and 2 canned vegetables, then headed to the Visitor's Center for the nightly ranger talk. We usually find these informative and entertaining. For example when we were at Glacier last time, the local Blackfeet Indian tribe performed indian dancing in full dress. At Little Big Horn, we listened to one of the most moving interpretations of the history of the place I could possibly imagine. That guy was amazing. Then there is this night's speaker. Have you ever gone to a meeting where the speaker has a prepared PowerPoint presentaion, and proceeds to read it to you? And the PowerPoint presentation really bored you to tears? And the guy repeats the same point over and over ad-nauseam? And has a droning voice that makes you want to cut his vocal chords? And goes so far afield of his main point that you want to stand up and tell the guy to show his audience mercy? That was our nightly entertainment.

We left early.

With a hankering for ice cream, we stopped at Dairy Queen, but declined to wait in line for a half hour to 45 minutes. But we did stop in to Safeway where we bought a large container of ice cream and pigged out.

Since my eyes are red and burning (man, it's bright!), I'll sign off. My love to everyone.

Visiting July 7 to July 10, 2010

As we were preparing to leave the motel in Hays, we noted that the sky was really dark. Ray had managed to get our stuff in the car, and we were ready to leave. We opened the door, and all of a sudden the sky opened up in a torrential downpour. The rain was coming down so hard, we could barely see our car parked about 30 feet away. We waited it out for 20 minutes, and then made a break for it as the rain lessened a bit in intensity. On to Denver. It did rain almost all the way across Kansas, turning to just gray skies by the Kansas/Colorado border. It stayed that way all the way to Denver. By the time we got there  (early afternoon), the temps had skyrocketed to 67 degrees. The normal high there at this time of year is 85-90+. But who cares? For the rest of Wednesday, and all of Thursday the weather remained cool and cloudy, but Larry, Rose, Chris, Ray and I had a wonderful time shooting the breeze, eating, and drinking. What a great time! We may not see each other in person that often (though Skype has been great), but this was an opportunity to connect, laugh, cry, and relax. On Friday, the sun came out, and with it temps in the 80s, just in time for a visit from Scott (our nephew) and Brittany (Scott's daughter). Just another day of kicking back and relaxing.

On Saturday, we all packed off to Colorado Springs for a visit to the Air Force Academy, Garden of the Gods, and a late lunch. While at the Academy, we had the opportunity to see several squads of new cadets being drilled on the parade grounds. Beautiful day, beautiful place.

Larry and Rose, thank you so much for everything! After these days that may turn out to be the best part of our trip, Sunday we headed for Rocky Mountain National Park.

Rocky Mountain NP, July 11, 2010

After a stop at Wal-Mart for groceries and supplies, we set off. Arrived here at about 3:00 p.m. Estes Park (the city) is not what we remembered from our last visit here in the 90s. It is completely commercialized-scores of hotels, motels, stores, "shoppes",tourist entertainments (a water slide, miniature golf) and more. It used to be a much smaller town that just happened to be at the entrance to the National Park. Boy has it grown--and not necessarily in a good way.

We checked into our cozy KOA cabin, and after dinner of chicken salad, we drove into the park via a back road where we encountered an elk grazing on some downed tree branches in someone's front yard. The park itself is as spectacular as ever. we went back to our cabin to crash (we watched the initial episode of The Pacific, Larry).

Tallgrass Prairie, July 6, 2010

The ride from Overland Park, KS to the Tallgrass Prairie Preserve should have been 2 hours or so. But Bambi (AKA our Garmin) got confused and directed us to bypass the correct exit. In most eastern places, we could just drive a mile or so and turn around. But this is Kansas, and the only option for us was to drive 19 miles to the next exit, and 19 miles back--about a 40 minute detour.

But before that, the ride on I-35 turned a bit hairy, as we drove along in relatively light traffic, and noticed that something had flown off a vehicle ahead of us. A few seconds later, as we neared the vehicle in question, we realized that what had become airborne was 2 tires and half the axle from the RV someone had been pulling. We were amazed that the driver did such a great job controlling his trailer, and was able to pull to the side of the road without incident.

Our destination, as I said, was the Tallgrass Prairie Preserve near Strong City, Kansas. Tallgrass prairie once covered 140 million acres of this country. Within a generation the vast majority was developed and plowed under. Today less than 4% remains, mostly in the Kansas Flint Hills. Opened in 1996, the preserve protects a significant remnant of the once vast tallgrass prairie. The preserve itself is about 11,000 acres, in a unique private/public partnership between the National Park Service (the primary land manager), The Nature Conservancy (the primary landowner), and the Kansas Park Trust (cooperating bookstore and promotion). If you get here by 11:00, you can take the bus ride around the preserve. As long as there are 2 people, the bus will run. Obviously, this place is not heavily visited. But because of Bambi's screw-up, we arrived late and landed up touring the place on foot. We hiked a 3.8 mile trail that took us into pastures over hills and into a meeting with some curious cattle. About 40 cattle gathered in the middle of the trail through which we had to walk, a few of which seemed not too happy to have us there. They bellowed and postured, but a bit of "shushing", had them moving along, and the trail opened once again. We also saw the 14 bison that call the preserve home. Thankfully, the weather was somewhat overcast, so most of our walk was reasonably comfortable. The sun came out for the last 1/2 mile, making it VERY uncomfortable and sweaty. This is a beautiful place of rolling hills and sky: certainly worth the visit.

We are spending the night in Hays, KS, and heading to Larry and Rose's in Denver tomorrow.

St. Louis, July 5, 2010

We set off at 8:15 this morning for the St. Louis Arch. We had made reservations online last week for 9:30. Having done that, we were able to skip the ticket line, and head for the tram that ascends the arch. Underneath the north and south legs of the Gateway Arch, you can board one of two enclosed trams, each of which has 8 cars. Each car seats five people. The cars are very small, so if claustrophobia is problem, this may not be the ride for you. Ray is sitting in the seat with the most headroom in the photo, and he couldn't sit up straight. The side seats are worse. But then, it's only for 4 minutes up, and 3 minutes down. Anyway, after a narrated trip, you’re at the indoor Gateway Arch Observation Area. There, thirty-two windows (16 per side) allow views across the Mississippi River and southern Illinois, and the City of Saint Louis and St. Louis County to the west beyond the city. On a clear day, you can see up to 30 miles. It was a clear day, and the views were great. On the observation deck, we met a couple from Madison, WI who had been vacationing in Texas, and on their way home. The husband was an electrical engineer working at a regional airport in WI. They recommended that we visit Texas, more particularly a town called Fredericksburg-west of Austin. Sounded like a nice place. Maybe on another trip... We did note that the Mississippi River was over its banks at the Arch. There were stone benches down by the water that were surrounded by water, and we saw equipment pushing the mud around by the river bank. Apparently, the river has been in flood stage for quite a while, some areas worse than others.

After browsing the museum in the monument base, we started for the St. Louis Basilica.  Our first attempt had us at the door of the "old" basilica located near the Arch. This church was closed. We then found that we had to drive a few miles to the newer Basilica. What a treasure! They started construction in 1907, and didn't finish all the mosaic work until 1988. It is the 2nd largest assemblage of mosaic work in the world. The 1st is at the Vatican. Every bit of the ceiling, and much of the walls are covered in fabulous glittering mosaic. This place is jaw-droppingly amazing.

We then set off for a hotel just south of Kansas City, that will be a jumping off point for our visit to the Grasslands National Monument tomorrow.

Driving July 4, 2010

On the docket today was the drive from Harrisville, PA to Collinsville, IL. This was just a long highway trip across Ohio, Indiana, and into Illinois. The scenery, once you're out of the PA mountains is flat, flat, flat. Just for kicks, we counted the road kill today--47 from start to finish of the drive. (It's more interesting than looking for license plates with the added bit of interest of deciding what exactly the animal was before being hit: raccoon? skunk? fox? Deer are usually easy to distinguish-even if only half of it is left. Some furry mounds were completely indistinguishable.)  An interesting set of billboards along the way in Ohio touted the RV business of a man with an unfortunate (I think) last name. Do you suppose he pronounces it the way it looks? Or maybe the French way: Rah-pair?

When we got to our hotel, we were pleasantly surprised to find that we each were going to be treated to our choice of 3 alcoholic beverages each, and hot foods. Very nice.

Tomorrow we will go to St. Louis and visit the Arch and Basilica. St. Louis is only 15 minutes away.

Real America, July 3, 2010

Our trip started today at 9:00 a.m. as we headed off to our day's destination, Harrisville, PA, a 9+ hour drive. You know, we really didn't see a lot of road kill along I-80, something that is unusual. The drive through Pennsylvania on 80 is usually punctuated with frequent sights of road kill--especially deer. As we drove west, we noted the scarcity of pine trees. But we could really see how someone from the open west/southwest would freak out at the tree cover here. PA--at least the central part that we saw, is all about rolling hills covered with trees.

Once at Harrisville, based on internet recommendations, we dined at the Family Traditions Restaurant, a homey, family-run place that specializes in broasted chicken (my dinner choice). We had great dinners at a reasonable price, made even more enjoyable by our waiter who made a point of proudly telling us that he had made Ray's salad. After dinner, we went out back of the restaurant where an old car rally was being held. People from around the area had brought their "pride and joy" classic cars for others to admire. And admire, we did. My favorite was an '84 Tiffany Cadillac, one of 14 built. It still had the installed car phone in it, an original since '84. Very cool! All the owners, and much of the town (population 876), stayed to watch the town's fireworks display. As the kids scrambled about catching fireflies, and the adults settled back in their lawn chairs, we perched atop a picnic table for prime seats to watch the fireworks show over a Pennsylvania field, on a perfect evening. Gotta love this country.

More Information 7/2/2010

So that we might leave for our upcoming (tomorrow) trip out west, I requested that I get the Herceptin chemo a few days early. Normally, I would get it on Tuesday. But so that we could get a few more days on the road, I asked that I get the Herceptin today. And so it was. Before each infusion, I meet with my oncologist. At this meeting, I had a number of questions, not the least of which was what the benefit would actually be to take  Arimidex. It works by decreasing the amount of estrogen the body makes. This can slow or stop the growth of many types of breast cancer cells that need estrogen to grow. Women whose tumors are hormone receptor positive take it. One of the types of tumors I had was weakly positive. But my oncologist indicated that I have 3 factors that make me more susceptible than many women for recurrence. She feels that it's worth trying the Arimidex.

Tomorrow we leave for the trip I dreamed about on those Saturday after chemo days when I felt like a dishrag. We'll be visiting St. Louis (the Arch and cathedral), the Flint Hills (Kansas), and then on to Denver to visit with Larry, Rose, and Chris. I'm really looking forward to that! Then to Rocky Mountain National Park, Arches National Park, and Grand Tetons. From there, we'll head home, with stops at a factory tour, historic sites, museums, whatever. Too cool. We also will hopefully be stopping in Rochester to visit with Alex and Jenna who are buying a home. I'll post here as the trip progresses.

Hope everyone has a wonderful 4th weekend!

Maybe not 6/15/2010

For the first time in treatment for breast cancer, I am seriously considering stopping treatment. I have researched this new drug they want me to take, and, considering the potential side effects, I am inclined to stop. As it is, I will wait a bit, consider things, and make a final decision after we get back from out west at the end of July. When is the cure worse than the disease?

A new wrinkle 6/15/2010

Just when I thought that I was on the verge of being able to leave medications and treatment behind, I find out that the next phase of treatment is hormone therapy in the form of a drug: Arimidex. Damn. This was a real surprise to find out that there was another step. I'll have to take this pill for 5 years. The potential side-effects (from WebMD) are  "Constipation, diarrhea, nausea, vomiting, upset stomach, loss of appetite, body aches and pains, breast swelling/tenderness/pain, headache, dry mouth, scratchy throat, increased cough, dizziness, trouble sleeping, tiredness/weakness, flushing and sweating (hot flashes/hot flushes), vaginal bleeding, hair thinning, and weight change can occur. " Sounds cool, huh? But it's only for 5 years. I am not happy right now.

A startling realization 6/10/2010

I just realized yesterday that this is the first week since late August of last year, that I have not had a doctor's appointment, blood draw, and/or medical test. Amazing!

My coumadin level is still not normalized, though. But I feel great, the eyes are watering less, my hair is growing back in (though I won't be mistaken for Cher anytime soon), and I can see little, tiny, itty-bitty eyelashes on my lower lids. And I am getting psyched for our upcoming trip out west!

Waiting for the answers 6/3/2010

When I was at the oncologist a week ago, I asked how long I'd have to be on Coumadin. When the clot was found in January, I was told I'd have to take it for at least 6 months. My question last week was: does the 6 months start at the time I get regulated to a certain dose? Or did the clock start ticking on that day in January?

Also, I had asked what my follow-up plan was, now that treatment has, for the most part (excepting Herceptin), ended. And is there any way to know if all the chemotherapy, surgery, and radiation of the last 7 months actually ridded my body of the cancer? The doctor that saw me on the 25th was not my usual, and he did not know me. He said to wait til Dr. Brown came back from vacation to get those answers.

She came back from vacation on Monday, and I had been expecting a call with my answers. The call that came was from one of the nurses there, who told me that Dr. Brown would discuss that with me on my next visit: June 15. So much for timely answers.

Not so fast... 5/28/2010

After going for my weekly blood draw for Coumadin, I received a call from the Cancer Center (Radiation place). Apparently they had been mistaken when they told me that I was done treatment. Their paperwork showed that I still had one treatment left. Now bear in mind that on the day before the "last treatment", I had inquired as to whether I really should have an additional day tacked on because one day the machine was down, and I had to skip my dose. "No", I was told, "we had just built in extra days to the schedule we gave you at the start." So, back to radiation I will go on Tuesday for what will hopefully REALLY be my last treatment.

BTW, it took 4 sticks to finally draw blood for the PT/INR test this morning. Do I really look like a pin cushion?

No wait! 5/25/2010

Got in on time for my appointment with one of the other oncology doctors. I had never met this one. Maybe the waiting was just the doctor's fault?? One of the nurses intimated just that...

Just 6 more Herceptin infusions to go, then, the port comes out!

UTI 5/23/2010

Because of the inattention of the oncology office to my PT/INR numbers (obtained from blood tests to regulate coumadin levels), I asked that my PCP take over that responsibility. Also, my PCP is about a mile from where I live, as opposed to the 30 minute drive I'd have to make to Nashua for them to draw and analyze. As it was, I had to chase the doctor or NP down to find out what dosage of coumadin I should be taking. They were asking me what dosage I was taking. Not good. So hopefully all that will change, now that a smaller and more personal office will be taking charge of that. I had a draw on Friday, and will probably find out tomorrow what doage I should be taking.

All that is against the backdrop of having found out that I have a UTI (urinary tract infection). The antibiotics I'm taking will hopefully not interact negatively with the coumadin. As it is, I've been on and off coumadin for 5 months, and they still don't have me regulated.

90% done! 5/19/2010

I finished radiation a day early, on Monday with mostly no ill effects--just some blistering on the front and back. Otherwise, it's all good. I can finally get some of my life back. As of yet, I'm waiting to hear from the oncologist what the follow-up plan is.

My hair is growing back slowly. It's shorter on top than on the sides. If I had been smart, I would have done what a lot of hairless cancer patients have done when treatment is finished--shave my head. That way, when the hair comes in, it's all at the same rate. Anyway, with about 1/4" long hair on top, I won't be having to make decisions any time soon as to whether to put my hair in a pony tail or braids.

I'm feeling great!

We are planning our summer trip in July: Denver, Rocky Mountain National Park, Arches National Park, Grand Tetons National Park for a start. I am psyched!

The squeaky wheel 5/4/2010

Today my appointment to see the oncology doc was at 8:45. Great timing, I thought to be an early patient, so I'll get into chemo early too. Dream on. As is habit at the oncology office, I was shown into the exam room 15 minutes late. After a vitals check , the nurse said it would only be a few minutes til the NP would be in. Yeah--RIGHT! 35 minutes later, I opened the door to the exam rooom, and summoned one of the nurses: "Have I been forgotten?" She said she'd check, and came back a few minutes later to tell me that the NP would be in "shortly". At that point, I told her that I was not a happy camper, and would rather have been waiting in the comfort of the waiting room, rather than the exam room, and that the wait was pretty much par for the course.  10 minutes later, a full hour since my original appointment, the NP came in.

By 10:30, I was hooked up to chemo. Shortly after I presented myself in the chemo room, I was greeted by the head nurse, who apologized profusely about the wait. Someone came by with a $5.00 gift certificate to Dunkin Donuts, and I was given the key to the city. ...Well maybe not he latter, but 2 people came over to apologize, with word that the wait situation would be discussed in clinic staff meetings. I'm not holding my breath for an on-time appointment in 3 weeks...

Radiation Dermatitis 5/3/2010

Radiation treatments are going along pretty well. But last week I noticed that my back seemed to be breaking out. I had been using this ridiculously expensive cream that had been recommended for use during radiation therapy. The doctor advised that I use it both on the front and on my back in the shoulder area where the radiation beam exits. The "zits" were in the shoulder area. When I found the problem area, I immediately thought that the cream just wasn't agreeing with me, and that it was causing the break out.

But I inquired at the radiation center and was told that, no, what I had developed was dermatitis--essentially burn blisters. I do have an area on my back that resembles a sunburn along with the blisters. They are starting to form on my chest as well. Oh well, only 11 more treatments to go.

Touchy 4/30/2010

The other day I used the bathroom at a local store, and was washing my hands at the sink, when a woman opened the door to enter the restroom. She glanced in, saw me, and said "Oh!", and shut the door. Then she opened the door again, and when she did, I said "Yes, this IS the ladies' room. I'm a woman, not a man. Chemo will do that to you." She then entered the rest room--without a word. While I understand that I don't look very feminine these days--butch hair (not quite 3/8" long), no eyelashes and sparse brows, and tall, I must admit that, of any personal interaction I've had since the beginning of this strange odyssey, that was the most hurtful. Onward.

Settling Down 4/24/2010

Since my last post, there's really not been much to report on. That alone is probably newsworthy as far as I'm concerned. I thought it amusing that when I went in for my blood test yesterday, the person in the lab asked me to go across the street for the blood draw, where Jen was working. Jen has always been able to get a blood sample on the first try. Sure enough, no problemo this week. BTW-my INR is 2.4 (should be between 2 and 3). That's the first time it's been in that range.

Radiation is going fine. I had to miss one yesterday because the radiation machine was being worked on. So that puts my last day on radiation at May 18.

I've been feeling really well lately, as I feel my stamina coming back. Outings at the gym have been more vigorous, even though these days I've got to be careful about the lymphedema. Physical therapy has been useful, in that I've been showed ways to manage the lymphedema for the rest of my life--manual lymphatic drainage, scar massage, and stretching techniques. I've been instructed on stuff like measuring my fingers, hand, and arm to track the lymphedema. Very funky.

I just recently got a nice webcam, and would like to invite you to skype. You download a little piece of software, set up an account, hook up your webcam, and you can make free video calls to other skype members. My username is evaskid. I'll be seeing you!

PS--the eyes are still watering!

Vasovagal syncope 4/15/2010

I'm learning so many new words these days, it's amazing. Not that I really wanted to learn them.

After radiation this morning, I went to the lab in the oncology building to have blood drawn for my PT/INR (coumadin dosage testing). Arrived at 8:40 and I was called in almost immediately. Lately, because I can only have blood draws from my left arm (because of lymphedema in the right), the nurses have been having trouble finding a good vein that isn't "beaten up". The nurse that usually has the most success wasn't in today. But everyone else in the lab is experienced, and I had no doubt I'd be out of there pronto. Silly me...

Since I have a blood clot on my left side, they typically insert the needle without a tourniquet. First stick--no success. Second stick---no success. Nurse #2: third stick--no success. Fourth stick--no success. By this time, I was gritting my teeth. I'm not a fan of needles. Nurse #3 tried at my wrist instead of in the crook of my arm. While she was trying to get a draw, I suddenly felt really lightheaded, and knew I was going to faint. I told this to the nurses, and in a flash, I was moved to the floor, sweating, and breathing shallow. When I opened my eyes, there was an EMT standing over me asking questions. As soon as I sat back up, I felt better. Even so, they took me by ambulance to the hospital down the street, where they did an EKG and were finally able to get a blood draw (INR 1.98). Since everything else looked fine, I was released at 12:15. Diagnosis: vasovagal syncope.

This has nothing to do with this blog...

...but I got a kick out of it and wanted to share it without sending email.

It's all about the lymphedema 4/10/2010

When I woke up this morning, my right hand was blown up significantly more than yesterday. I do hope I don't get to the point where I can't make a fist. As it is, the skin feels tight on my hand, and my arm is somewhat painful.  I wear a compression sleeve 24/7 and may have to wear a compression glove as well. Otherwise, it's all good. Radiation does not seem to affect me negatively so far. It's at a time that allows me to get to work at the time I would normally get there.

The hair is coming back in, too. It's weird because it's coming in well everywhere except for the front top. I'm told that that's not unusual. IT BETTER NOT BE!! It would be too much of a cruel joke for me to share in  Dumais male pattern baldness!

Itchy! 4/1/2010

When I went to the surgeon on Monday for my check up, I mentioned to her that one of the stitches was sticking out and was a bit scratchy. She said that it was no problem to snip the stitch, which she proceeded to do.  To be extra careful, she applied antibiotic and 2 small steri-strips.

Yesterday, just before bed, I mentioned to Ray that the steri-strip area was very itchy, and, for that matter red, and the red surrounded the area to which she had applied the strips. By this morning, the itching was intense, and the red area bigger. Fearing that any infection might interfere with radiation, this morning I called the surgeon's office for advice. Their response was that I should come on in right away before radiation, so they could inspect the area.

It turns out that I am allergic to the adhesive that she used to adhere the steri-strips. The strips are gone now, but the itch remains, and hopefully will diminish with time.

Radiation is a piece of cake. You check in, change into a hospital robe, wait a few minutes in the lounge, go in and lay on a table with your arms over your head for a few minutes, get up, get dressed and leave. The whole process takes about 15 minutes.

I start PT next Wednesday with a lymphedema specialist.

BTW--my hair is starting to come back--not so much that it would keep my head warm, or that you'd mistake it for anything other than fuzz, or that I'd have to worry about clogging up my bathtub drain with it when I wash my head, but it is coming back all the same. It's maybe 1/4" long now--Maybe I'll wear it in a ponytail tomorrow!!

Lymphedema and Cording 3/29/2010

Today I saw my surgeon for the first time since surgery for a check up. Actually, the bruising has faded substantially, and I'm feeling very well. One thing I have noticed is that when I extend my arm, or twist my wrist (as if to open a door), I get a shooting pain in my arm. This is caused by "axillary web syndrome" or "cording". Axillary web syndrome is a common complication that occurs when there is trauma to the lymph nodes in the armpit--usually after surgery to remove lymph nodes. Apparently the cords are obstructed lymphatic vessels. Axillary webs look like cords, and the symptoms are pain and tightness, and limitation of movement. The cording can be located just in the arm pit, or it can spread down the arm, all the way to the thumb and onto the chest. My cording just goes down the arm up to my hand.

My surgeon has recommended that I get physical therapy to give me better range of motion, and to treat the cording. She mentioned that I do have Stage 1 lymphedema (reversible), and that I should wear my compression sleeve all day, every day. Lymphedema is a condition that occurs when the lymphatic drainage system is impaired to the extent that the amount of lymphatic fluid within a given area exceeds the capacity of the lymphatic transport system to remove it. In other words, the lymph fluid doesn't have the routes to drain, it puddles in tissue, and makes your arm get puffy. I had 14 lymph nodes removed, predisposing me to lymphedema. Hopefully, with the PT, I'll be able to manage this.

It was driven home to me at the radiation center, where the doctor made it clear that I had to protect my arm from: bug bites, sunburn, bumps, bruises, scratches, cuts, and burns for the rest of my life. Any of those things can cause the onset of severe lymphedema.

I'll just have to be careful...

This is getting ridiculous! 3/26/2010

On Tuesday, as I was finishing up my marathon chemo session, I was given 2 appointment cards. One was for my next chemo session on April 13th. The other was for another blood draw to determine Coumadin levels for today. In addition, the second card showed that I had an appointment with the Nurse Practitioner in the Oncology office right after today's blood draw. I asked why I needed to see Dottie, but was told that that was just what Dr. Brown (my onc) had ordered. Okey dokey...

So today I haul myself in for another blood draw. The poor nurses there are at a loss as to where they can stick me that isn't bruised, clotted, or in danger of causing lymphedema. But, champs that they are, they got the blood draw they needed. I trotted upstairs to the oncology office, as requested for my appointment. Within a few minutes, I was brought in, had vitals checked, etc. Then Dottie came in and asked "Why do you have an appointment today? All you needed was a blood draw for Coumadin levels."

Are you kidding me? This cost me a copay? And insurance paid the balance for nothing?
Then there's the issue of my time...

Port issues 3/24/2010

Yesterday was Herceptin and blood draw day. Since surgery is done, I have been able to resume taking Coumadin, a blood thinner (taken to prevent further blood clots from forming in my body). I still have not reached a therapeutic dosage of Coumadin, and the latest instructions I had was to take 17.5 mg of Coumadin until yesterday's labs. When I have a chemo treatment, I typically have an appointment with the doctor as well. That appointment was nice and early (8:40)--presumably early enough for me to get labs, see the doctor, get the Herceptin infusion, and be out the door before noon. Not so fast....

The labs and doctor's appointment went as planned, and I was ready for chemo by 9:30. My attending nurse had planned ahead and had the drip ready for me. All she had to do was to access the port (stick the needle in), make sure the port was not blocked and connect me up to the drip.

After the nurse puts the needle in the port, she typically flushes the port with Heparin, an anticoagulant that cleans out the port to make way for the drugs. After the Heparin goes in, the nurse then draws back on the syringe creating a suction that should draw blood through the port. It's a confirmation that the port is completely open. It wouldn't be good to be putting chemo drugs into a port that's plugged up.

The problem came in the blood return phase. The nurse just couldn't get any blood return, an indication that the port was plugged. Since this was not the first time this had happened, I knew the drill: get up and move around, bend over, raise my arms to see if that would coax the blood back into the syringe. No luck. Next came the Cathflo--a drug to dissolve the coagulation that might be blocking the port. One problem--you have to wait 1-2 hours after administering the Cathflo to allow it time to work. OK, I thought, no problem. Watch a little TV on Hulu. By 11:30, we were ready for another try at a blood return. No luck. Another dose of Cathflo. Another 1 1/2 hours of waiting. More Hulu. Another try at a blood return. No luck. Next up is a port study with contrast, a test that shows if the port is actually open or plugged. They inject the port with dye and take Xrays of the port. Results? The port was open and working. Think of a straw going into a flexible tube. If you suck on the straw, the wall of the flexible tube may collapse. That's what was happening with my port and the artery it goes into.

Bottom line? I started the drip at 2:30 and left the chemo center at 4:30. What a waste of a day!

May 17th! 3/19/2010

Yesterday I visited the radiation center to get my body mapped out for the positioning of the radiation beams. The technician applied tape with soldering wire affixed to it in a perimeter around the breast to delimit the area that will be radiated. Then he took CT scans of the area. I must say that it's an interesting process, albeit one I wish I never knew about. I now have 4 tattoos (just little blue marks) that will help them set up radiation exactly where they need it to go.

I also received the schedule for radiation, that has me finishing up on May 17th. Disregarding herceptin infusions every 3 weeks til September, I should be all done treatment on that day!

My hair is starting to come back in, and looks like baby bird fuzz...

Liberated 3/15/2010

Hallelujah!! Got the last drain out this morning, and I do feel liberated! It felt so good to be able to get back in the gym, and then take a GLORIOUS shower--not a half or three-quarter shower, but an over the head and shoulders shower. Like the song says: "Don't it always seem to go, that you don't know what you've got til it's gone...."

Onward! 3/12/2010

Just got the pathology back from the second surgery (last Friday). After reading through all the "scientific speak", I find that the surgeon was able to get clean margins on this cut. So I won't need another surgery to remove more tissue.

At this visit to the surgeon's office , I had hoped to have not only the Japanese squeeze torture wrap removed, but also both drains. Not so fast... the PA attending me wanted to leave one drain in for the weekend to make sure that there was no fluid build-up in the wound. So I still have one drain attached.

Without the pressure wrap on, I was able to see myself for the first time since surgery. Boy, if I had a hard time finding a comfortable and well-fitting bra before, that's going to be a MAJOR issue now! Seriously, I feel pretty well, and am just sore and black and blue (BIG TIME) from the 3 surgeries.

Next up is a meeting with the radiation center doctor next week to map out my treatment there. They will tattoo me at the exact spot where the beam needs to hit. I'll have 28 treatments, once daily (M-F). Looking ahead, I should be done with that by mid-May at the latest (but who's counting?). Is that a light at the end of the tunnel I see?

Third surgery is the charm? 3/8/2010

It turns out that there was a torn vein in the wound as well as another bleeding vein resulting in a hematoma. That's now fixed (hopefully) and I can expect the pathology from the Friday surgery this week. They sent me home bound tightly around my chest--like I would imagine Japanese breast binding to be. I have 2 drains again.

Not feeling too perky now, so I'll sign off. Love you all!

Latest news 3/8/2010

Ray took me back to the surgeon's office this morning, where it was determined that they have to go back and surgically fix the drains. Yes, it's back to surgery once more. I am checked in and due for surgery at 2:30 today.

By the time we got here, my shirt was soaked with blood. Not good. They wrapped my chest really tightly in a bandage designed to stem the bleeding from the drain attachment to my body.

On the positive side, the fact that the blood wasn't draining properly has caused the surgery side breast to be...well... to be delicate...firm and youthful in appearance. But, alas, that's only one side. The other looks like it belongs to a 58 year-old woman. Damn!

Clogged drains 3/8/2010

After yesterday morning's drama, I thought everything was taken care of. Silly me! We went grocery shopping mid-afternoon, and on the return, I discovered that the drain (s) must have clogged again because my clothes were all bloody again. I called the on-call physician who advised me to keep "milking" the drains and moving clots along the tubing, and to change the dressing as needed. But even after serveral attempts to unclog the tubing, the bleeding continued. We went to the local ER. Unfortunately the doctor there did not have the background to advise me. So after vitals were checked and a blood draw, they packed us off to the hospital in Nashua where the surgery had been done.

We arrived there at about 8:30. By 10:30, it was determined that the drains were---drumroll-----clogged with clots. The doctor tried to flush one of the drains with saline, and after that, there was no draining at all. The nurse replaced the other bulb and got it to drain acceptably. Bottom line is that I have instructions to go back to my surgeon today.

This morning it appears that the one drain is working, even though I did have some "seepage" overnight.

And I thought that surgery was going to be the piece of cake part of this whole process!