Ongoing Experience of a Cancer Diagnosis-My Niece Eloquent Words

About a month ago my niece, Brittany posted her thoughts and feeling regarding the end of her son’s (Ward) chemotherapy, the removal of the port and what it feel like to be a family that has survived the initial phase of cancer treatment, in a way too young boy (diagnosed at 1 1/2 years of age). I wanted to share it with you because it is poignant and real. I get this as a cancer survivor. I get this as someone who saw their husband die from the disease. I get it and yet I don’t. Each of our experiences with this diagnosis are just a wee bit different. Here is what I know-the diagnosis of cancer sucks. Plain and simple. Yet, for those of us who survive we each must find a way to move on, figure out a new norm and try to remember to live and breath every day.

Brittany’s Caring Bridge Note.

“And just like he rang the bell, chemotherapy ended, a scan was officially clear and all cheered.

Except me.

Why?

I want to breathe out, I have been holding my breath since December 8, 2017 at 10:30 a.m.

I thought this was THE end.  But it’s not.  It is simply AN end.  This is the beginning for a new phase of cancer, living scan to scan.

His name is off the prayer list, the cards won’t come anymore, we won’t see our doctors weekly, and the average friend thinks we are done, praise God.  The only thing that will keep coming is advice, a blessing and a curse.

There is no back to normal, we live now as a family traumatized by cancer.

The life we used to live meant we’d be planning a vacation and buying plane tickets, but now I count how many scans are between us and that trip, and how many times do we have to all hold our breath and hope to hear the words, “the scan is clear” again.

The life we used to live included parties, lots of summer parties.  But now parties make me anxious. Who is coming?  Are they sick? Do they know he had cancer?  Will they ask the hard questions?  Will I be triggered into anxiety by something new I don’t even know will trigger me?

The life we used to live included trust.  Now I ask do I trust his doctors?  Do I trust my decision-making?  Do I trust we can keep living?  Do I trust that the floor won’t crumble beneath us?

December to May we lived in triage.

We woke up, put on our pants, took a deep breath and did the emergency work the doctors guided us to do.  We showed up on time, we held him, we medicated him, we cleaned up the messes, we hugged each other, we cried when necessary, and we loved harder than we ever loved before.

But the triage phase is over.  We have paused.  We look back.  We look forward. We look inside.

When will we breathe out?

It may never be all at once.  But we will slowly exhale over the years with each new day, each giggle, each birthday, and each milestone.  We will slowly exhale each clear scan and each year further from cancer.

Hope and love will remind us to breathe in the meantime.”

A Mountain Biker’s and Railroad Lover’s Day in the High Country

Point Reyes National Seashore

This post was published on Roadtreking : Celebrating the RV Lifestyle today. I thought I would like to share it with my readers without all the ads.

Many years ago I was visiting a good friend in Santa Cruz, CA. He suggested that we go camping at Point Reyes National Seashore. We took his two mountain bikes and biked into one of the campsites near the ocean.

I had never been on a mountain bike before. As we were dropping down the hill to the campsite a huge boulder suddenly appeared in front of my bike. I put on the brakes, hit the boulder, flipped over the boulder, the bike flipped over and landed on top of me. I ended up with whiplash and lots of bruises. As I lay on the ground my buddy, Neal looked at me and said “Wow, Janet that was a great flip.” So much for sympathy and help.

It took some time to recover from that incident. Since then I have had a few minor incidents with mountain bikes. I have religiously avoided them. Until today.

Today I decided to be brave and rode the Hiawatha Trail on a mountain bike. This hike and bike trail is 15 miles long with 10 train tunnels and 7 sky-high trestles. This Rails to Trails path follows the crest of the Bitterroot Mountains on the border of Montana and Idaho.

I rented a mountain bike, helmet and headlamp at Lookout Pass Ski Resort, mile 0 on Route 90. I put the bike on the back of my Roadtrek and drove to East Portal. East Portal is the beginning of the 15 mile gradual descent.

On a beautiful sunlit day I approached the mile and a half tunnel. I turned on my head lamp and began my descent into darkness. I could only see as far ahead of me as my head lamp would allow. The only sounds were of water, my bike and me letting out an occasional whoop. The echos were great.

Entering the St Paul Pass Tunnel

After my mile and a half ride, I came out into brilliant sunshine, incredible blue skies and a water fall. How much more perfect can one get than that. The temperatures were in the 60’s at the start of the ride. By the time I finished the trail, the temps had climbed into the low 80’s. As the temperature heated up I could smell the pines and the damp earth. It is such a fine smell.

Along the trail there were signs to stop and read and learn about the building of this incredible stretch of railroad. Along the way I learned about the “Silks” and the early days of first class travel on the rail.

Here are a few of my favorite interesting facts.

  • The “Silks” were special trains that transported Asian raw silk from west coast ports across the country to the east for processing into finished garments. These trains were fast and were considered top priority.  Raw silk deteriorated quickly, the price of silk fluctuated rapidly and insurance was high. There was also a fear that silk could be hijacked from slower trains so it was important to move it as quickly as possible. In 1928 at the height of the silk trade $452,000,000 of raw silk was transported across the continent. When other ways of shipping took over (the Panama Canal) the “Silks”run faded away.
  • The railroad was one of the great hirers of freed black slaves. They became porters and waiters on the trains. It was a very different lifestyle than anything they had known before.
  • The Olympian line was the Milwaukee Road’s flagship luxury line to the Pacific Northwest. When introduced in 1911, it was the first railroad to offer “all steel” cars. To further define the uniqueness of the line, the cars and engines were painted orange and maroon and were among the first to carry broadcast radio receivers.
  • The section of the route crossing the rugged Bitterroot Mountains was considered the most scenic stretch of railroad in the country.
  • It was named to the hall of fame by the Rail-to-Trail Conservatory, one of only 15 trails across the United States to receive this designation.

Approaching the end of the St Paul Pass Tunnel

As I approached the end of the trail I had two choices. I could turn around and ride my bike back up the trail I had just come down or I could take the shuttle bus. l climbed on the shuttle bus for the ride back to the St Paul Pass Tunnel. The shuttle dropped me and the other riders off a mile and a half short of the trail head. All of us got to experience the ride through the St Paul Pass tunnel once again. It was a great way to finish the day, riding and whooping into the darkness, once again. It was a great finish to an absolutely beautiful day in the high country.

A favorite view of the trestle

 

 

 

 

 

 

 

 

 

Now my day is over and I am camped next to Lake Coeur d’Alene in a National forest campground. I have been for a swim to get the trail dust off. The water was warm on top with a bit of chill coming from below. It felt wonderful. Another good finish to a good day.

Here are suggestions and facts regarding this trail.

  • You can boondock  in the parking lot at the ski resort for free. I did this. It was quiet and peaceful. The workers coming in the morning were a good alarm clock for me.
  • Go early. The rentals open at 8 a.m. The Trail opens at 8:30 a.m. I recommend the early hours because it is cool and pleasant. For you photographers, the lighting was good, really good in the earlier part of the day.
  • There is a fee to ride the trail. You can pay it at the ski resort or at the trail head. These fees help maintain this amazing trail.
  • There is a fee for the shuttle. I did not buy my ticket until I got to the end of the ride. I thought I might pedal, back but there was a very patient little kitty waiting for me to return. After bumping along for 15 miles I was ready to give my seat a respite.
  • This is not a breeze of a ride. You do have to pedal. The trail is well maintained, yet it is dirt and rocks. I wore my bike shorts under a pair of regular shorts.
  • Take snacks and water with you. They also sell snacks and drinks at the trial heads. Just remember that what you take in you need to take back out. There are no trash receptacles along the way.
  • Take your time. Read the signs. Take pictures. Be amazed. It was a delightful day.

Glacier National Park, Personality, Adventure, Beauty, Exploring Inside and Out, Grief

I continue to remain in Montana near Glacier National Park. The Roadtrek Rally was a success. I managed all the people by remaining scarce, thanks to my friends Linda and Steve. Each day we hiked in Glacier National Park and returned to the rally site around six or seven in the evening.

In the evenings or mornings, people would stop by and visit. If I got peopled out I would disappear into my rig. It worked out, yet, to be honest I don’t think I gave this rally a fair try. I was overwhelmed by the numbers of people that were there. I was overwhelmed before I even arrived. If I choose to attend another one I might stay around for more of the group activities. I believe that if I pick and choose what I want to attend then I will have a little more control over the people time. I know I can be a bit more social than what I ended up doing on this trip.

Glacier National Park was amazing. It has been many years since I traveled in this part of the USA. My first introduction to this park was a backpacking trip with a good friend of mine, Diane, back in the early 80’s. I loved the remoteness and majesty of it then and I find that has not changed one bit. I saw a lot of animals and amazing sites. It was awe inspiring at the least.

On the way north from Boise I lost a part on the outside of my Roadtrek. I have remained in the area while waiting for the part to arrive. I had it put on this afternoon and now EmmyLou the Roadtrek is once again whole, well almost. I still need to find another missing part. That one is not visible to the eye.

As I came out of the drive across Logan Pass (Going to the Sun Road) I received news from friends back east. Once again I am struggling with the basics of life. Many years back, 2013, I posted regarding my friend Zoe. We met on a breast cancer support web site. She and I quickly became friends. Her support was so instrumental in my struggle with breast cancer and it’s treatment. She has helped many people while going through her own struggle with stage 4 metastatic breast cancer. Her support around Jim’s death was that of a good friend who was always there, no matter what time of the day or night.

Zoe & Kay

Zoe is now approaching the end of her life. I struggle to write this here as I am not really sure what to say. For the last few days I have sat in a forest and dove deep into grief. Grief for the struggle that her and her partner Kay are going through. Grief knowing I won’t be able to see my friend again. Grief for my own suffering and broken heart, no matter how selfish that sounds. Grief for the sake of grief. I have only done this adventure into this area of my life since Jim’s death. I am beginning to recognize when it comes. I tell myself, OK go feel it, you have forty eight hours and then get out of there. Deep grief is not somewhere I want to stay long.

the view from my campsite on the river.

Forty eight hours is now up. I moved out of the forest and am now nested along the Flathead River. Moving out of the forest may be a symbolic move, yet it helps to look out and see the whole world, not just trees. I ventured out tonight and talked with others in the campground. Moving out of grief means moving out of my small and tight world and stretching myself to get back to ” normal” once again. I am not sure what normal is.

I need to ask myself how is it that I can best support my friends during this end of life process? Zoe is not dead, she is dying and no one, including her knows the length of this process. It could be days, weeks or months. She is lovingly supported in hospice and surrounded by friends, her church and mostly her wife, Kay. I don’t know if there is a term for this observing and supporting the dying process, yet that is what we are all doing, for whatever length of time it requires of all of us.

I love Zoe. We have not always seen eye to eye but that is what sisters do. She is my sister and my friend and I am heart broken at the impending loss of her on this planet.

I share this with you all because that is all I can do. “Thoughts and Prayers” seem to lose their intense meaning today and yet that is all any of us can do, think of those we love and pray. That is what I am doing. I carry Zoe and Kay close to me and when I see amazing natural places I hope they know that I see them there too. Nature is a wonderful healer.

In a few days time I will be moving slowly west. I am looking forward to seeing beautiful mountains and seeing friends along the way. I will choose for this moment in time not to spend too much time alone. I can easily sit in a campground and enjoy those around me, even at a distance. I don’t necessarily need to talk to anyone. It is good to have them near by, just in case I feel a social call coming on.

I am back to the present moment. I am remembering to breath. I know that many of you are there if I need to reach out and talk to someone. I am grateful for this knowledge, love and caring support.

Sunset on the Flathead

Now I will be off to enjoy the rest of the evening by the river before the doors shut and I head for bed.

A Quick Update About My Busy June

Ultimate Alaska

Whew, what a whirlwind the early part of June has been. June first I left for a small ship cruise to Alaska’s Inside Passage. it was a great opportunity and an amazing trip.

Upon Returning to Boise I turned around in a day and headed north to the Roadtreking Rally on the east side of Glacier National Park (over 70 Roadtreks from all over the the country). My down time has been minimal. I want some time to recover and adjust to life on the road with Miss Elsie the Cat.

Glacier National Park

 

Due to some minor mishaps with my Roadtrek I am in Kalispell, MT for the next few days, waiting for a part to arrive, so my Roadtrek can once again look whole and pretty. The nice thing about having to sit still is that I am finally having the time to regroup and figure out what is next. The other nice thing, I get to interact with the local community.

  • Last evening I went to a special event at the Hockaday Museum of Art in Kalispell. Earlier in the week I met Deborah McAllister plein air painting near Many Glaciers Lodge. She informed me of an event that was culminating last evening. Several artists spent last week painting in the park. Last evening was the opening exhibition and sale. I put on my somewhat nicer clothes and went to the opening. there was food and wine and live music. It was a delightful evening.

Plein Aire Painting in the Park-artist Deborah McAllister

  • Today I went to yoga. Tomorrow I think I will return and experience aerial yoga. It is a nice community yoga center.
  • Now I am at the local coffee house waiting to get my nails done. I will almost be civilized.
  • After all this I am off to the visitors center to discover what else is happening in the area.

Where am I going to travel off to next? I am not sure. That is what regrouping is all about. My intention is to continue to head west to the coast. Hopefully over the next week this picture will become clearer.

Stay tuned.

 

 

 

It Is All About the Journey

There have been moments in my life where I have stretched myself, my beliefs and my reality. These moments have not been without question on my part. I have often wondered if I should have ventured out into this part of my life. Often omens or portents make me question what I was doing-for example, the road I was suppose to take is closed, a bridge is washed out. At times like these I find I question whether I was doing the right thing for that moment in time.

These barriers on the journey are really a way to question myself, my beliefs and the reason I am heading in a particular direction. It helps clarify things for me.

  • June 14th I returned to Boise, ID from Alaska with a whopping head cold. The first one since Jim died over 5 years ago.
  • June 16th I left Boise with plans to meet up with fellow Roadtreker’s and friends, on my way to the RT rally east of Glacier National Park. Not more than a hand full of miles north of Boise I discovered the cover that protects my refrigerator was gone. I turned around and returned to Boise in hopes of finding it along the road. No such luck. I waited until the following morning, visited the Roadtrek RV dealership in town, in hopes of getting a replacement part, to no avail. After conferring with Campskunk, Matthew from Roadtrek (yes I did call them on a Saturday and yes they answered), and Nelson’s RV (they recently repaired a propane leak), I left bright and early the next morning with a hole in the side of my EmmyLou and headed north.
  • June 17th I finally am on the road and several hours north of Boise, when I saw something drop out of the engine of my RV. I turned around to return to the scene of the crime, and there it was, a cover and a belt looking thing, laying in the road. I crawled underneath the rig and saw nothing wrong. Up goes the engine hood and yep I am missing a protective cover for one of my headlights. I look at the opposite one to see if I can figure out how to reattach the broken one and this one breaks, right before my very eyes and falls into my hand. What???? Thank goodness for Duct Tape. I reattached both of them and went on my way.

I am, at this time, addressing my, not so, underlying issue. I am nervous about coming to the Roadtrek gathering in Glacier National Park. I can already hear all of you saying, “we are such a nice group of people”. I believe you are. Trust me this is not the issue.

I have not been around such a sizable number of people since before Jim died. No I did not have a celebration of life. The largest group that was involved with ceremony after Jim died was eighteen. This was the group that boarded the catamaran to take Jim to sea.

When Mike asked me to post for Roadtreking: Celebrating the RV Lifestyle, I wasn’t sure about this adventure either. Their were a few points that made me decide to give this a try. I believe that between my own blog and Mike’s blog, if I can make the transition through grief to solo, even a wee bit easier for others, it was something I wanted to take on. I also knew I could and would choose to remain as invisible as possible. If it ever became something I did not want to do, I could stop. I could turn the computer off and walk away.

I have been to one rally, sponsored by RTI in Monterey. I am friends with the organizers. This event was the first one they took on as Vice Presidents of the Southern California Branch. I wanted to support them and see them succeed. They were very good and kept it low key that I was there. It wasn’t until the last morning that someone appeared at my table and let me know they were aware of who I was. They were the only ones who stepped forward and I was glad for that.

It is hard to walk the line between being an extrovert and introvert. I lived with an extreme introvert. Jim had learned how to address this issue over the course of his life. It was important for him to be involved with others. Many times it was a push for him to do this. We often would take two cars to parties so when he was done he had a way out. If I wanted to stay, I had a way to stay. I walk the line between these two personalities. I enjoy the company of others and I so need the time away or alone.

I have worked myself into a bit of a tizzy about these coming four days. My friend, Linda has helped me with this a lot. Sometimes it is good to have a shoulder to lean on, at least a little. I have challenged myself to do this.

The obstacles I mentioned earlier in this post, have given me ample opportunity to turn around and head for the hills. With each one I have questioned myself, my intentions, and the reason I am attending. Each one has continued to point me north.

Today, Monday I will arrive at the Roadtrek Gathering outside of Glacier National Park. If any of you are there and you find my door closed, my bike gone or me gone, just know I am out replenishing myself so I can enjoy everyone’s company again. And….I really do look forward to meeting each one of you, so please don’t hesitate.

Oh no a deer in the road this morning!!! I was able to stop in time.

Onto Glacier.

Returning to the Outside

Wow, two weeks later I am returning to Boise, Idaho from southeast Alaska. It feels like I have been gone forever, the sign, I believe, of a good trip. It has been a great trip and a wonderful adventure. I am so glad I said yes, when Leslie asked me to join her on this small ship cruise. 

I am also glad I tagged on a day at the beginning and one at the end of the cruise. Yesterday, June 13 we spent the day with a friend of mine and her partner. Jane was an amazing tour guide in Juneau. We toured, we talked, we caught up and even saw a bear. 

Here are some of my highlights from the past two weeks.

  • Glaciers-all sizes, all kinds, calving, not calving, icy cold.
  • Icebergs floating by. 
  • Eagles-lots and lots of eagles.
  • One orca.
  • Humpbacks, lunge feeding in Taku Harbor. This was an amazing event to observe.
  • Our Glacier Bay National Park experience was made even more amazing by having Janine, our ranger guide on board. Her enthusiasm and warmth and kindness made everything in and around the bay come alive. She even did the official swearing in ceremony for those of us who completed our Junior Ranger Badge booklet.
  • Bears up close and from afar.
  • Flowers-spring is happening in the Tongass National Forest.
  • The Light House Keeper’s talk as we entered Frederick Sound.
  • Reuniting with Leslie and spending time with her. We had years to catch up.
  • Catching up with Jane in Juneau. We toured, saw a bear, walked the labyrinth at St Therese Shrine, visited the botanical gardens and saw the new humpback whale sculpture on the waterfront. 
  • Hiking, small hikes, large hikes, beach combing and more.
  • Learning about the Tlingit culture in the village of Kake.
  • Learning about the Norwegian culture in Petersburg, AK.
  • Birds-so many shore birds. Kittiwakes, Pigeon Guillemots, Murrelets, Gulls, Oyster Catchers and more. Lots of activities on the icebergs.
  • Sea otters lazily floating by on their backs.
  • Stunning sunsets late into the evening. The sun did not set until close to 10 pm each night and sunrise came early (4ish). 
  • Food amazing, delicious, yummy food. 
  • The crew on the ship was accommodating and kind. They were fun to be with. I spent a few evenings playing Bananagram with the bar-tender and the naturalists. 
  • Finding quiet places on board the ship to read and ponder while protected from the wind.
  • Lastly my fellow passengers. I enjoyed them all. There were close to 45 of us on board. With two weeks and a small group it was easy to meet all of my fellow explorers. It was a delightful crowd, not one fussy one in the bunch. It made for an easy family for the ten days we were on board. It would be fun to meet up with them again, although the chances of our crossing paths again is slim.

Now my summer is ahead of me. I am not sure exactly what I am doing. Yes that is true. When I return to Boise, I will catch up with my friends there, meet my sweet little El Cat after a rare separation, and return to my small home on wheels. Shortly after my return I will be off to a Roadtrek Rally east of Glacier National Park, Montana. This will be my second rally with the Roadtreking group and I am curious to see what this one will be like. A rally is a gathering of RV’s and their owners. This one will be mostly Roadtreks. 

And here is my truth-I am a bit anxious about this gathering. There will be at least double the number of people, than on the ship. I have not been a big group person since Jim died. The number of people is a bit overwhelming. I am a guest reporter for Roadtreking: Celebrating the RV Lifestyle.  People who follow this blog know who I am. I am feeling somewhat at a disadvantage because I know very few of them. It may be hard to believe but I do have introvert tendencies and I am nervous about this situation. 

How did I get here? When I started this blog, Journeys of Thankfulness, I also joined the Roadtrek Facebook page. With my first post I heard from Mike who is the owner of the Roadtreking blog and he invited me to join his group of guest reporters and post blogs from the road. I decided to be brave and do this and have intermittently been posting on his blog over the ensuing years. And now I have arrived at this place and time and this is the result. 

I have mostly traveled alone or in small groups and avoided any gatherings. I have gone out of my way to not meet other Roadtrekers and RV’ers, on-the-road. I guess I wanted to be an invisible presence. Now that may change a little bit or a lot. Who knows. It is anybody’s guess. I am just nervous about it. Like the rest of my life, I am going to push forward and know if all the people get to be too much I can get in my RV and leave or go on a hike or just close the door to my RV and pretend I am not home. 

I am getting ready for summer and can’t wait to see how it unfolds. There are adventures big and small waiting around the bend. I plan to reach out and embrace them as much as I can.

As I say a longing farewell to Alaska and return outside (that’s what Alaska calls the lower 48), I will stand as strong as I can from day to day and greet adventure with open arms. 

The Details-The Ship, The Crew, The Food and More

Alaskan Dream Cruises

I realized today as I am sitting at the port in Skagway I have not given you much information about the ship or the company I am traveling with. How did I get here? What are my accommodations like? How about the food, is it yummy? Who is taking care me?

On a rainy day, the first one of the trip, I decided that this is a good time to answer some of these questions.

The company I am traveling with is Alaskan Dream Cruises, located out of Sitka, AK. They are an all-inclusive, small-ship cruise. They offer a mix of excursions into several ports of call and Native Villages, mixed with hiking, kayaking, wild animal and glacier viewing.

Alaskan Dream Cruises have several different size ships. I am aboard the Chichagof. It is a 74 passenger ship. This is their largest ship.  We have 45 on board. They offer a variety of tours – from day tours to 10 day Cruises. The ten day cruise is the one I am on. We started in Sitka and will end in Juneau. In between we have visited a Tlingit village, and traveled into remote areas of southeast AK.

The staff is amazing. They are young and educated and fun. It is such a joy to be around so many people who are so enthusiastic about their job. They have no problem admitting when they don’t know something and they are way more than willing to find out said unknown answer. The crew is from around the world. We learn from them, they learn from us. They blend in well with us and with each other.

Leslie and my room is cozy with two single beds. We both have a window in front of our bed that is large, looking out over the water when we wake in the morning. There is a shower and bathroom. It is a cozy room just right for two friends traveling together. The staff leaves an information sheet regarding the next days itinerary, on the beds each evening, topped off with a chocolate goodie.

The food has been extremely yummy. The chef appears to outdo himself every day of this trip. From breakfast on the good and delicious food flows throughout the day. Here is an examle

  • Breakfast-Blueberry Walnut Pancakes. Eggs, your choice on how they are cooked. A different omelet every day. Lighter fare includes yogurt, fruit, hot cereal and more.
  • Todays Lunch-features a Smoked Salmon BLT and Beef Stroganoff. It always includes a salad, soup, the most delicious breads and of course dessert, which changes from day to day.
  • Dinner-Crabcakes, Salmon, other fish entrees and much, much more.

If you find you are gluten free, dairy free, or vegan the kitchen accommodates those needs. Nothing is too big an issue for them to address.

Sangria

I cheated this is from our Crab Fest

 

 

I found my way here because of a good friend, Leslie-she lives in Anchorage. She sent me an email to see if she could entice me to come to Alaska and join the cruise. I sent her an email back immediately with one word in it-“yes”. Then I asked for the weekend to think about it so I could find someone to love Miss Elsie the Cat while I was gone. She is being well loved and so am I.

Today we rode the train to White Horse Pass at the edge of the Yukon. It has quite a history. Many lives, animal and human were lost in the building of this rail. It was completed after the end of the gold rush in1900. The rail did very little to help improve the conditions of the miners looking to strike it rich. It was a lovely and awe struck ride this morning. I still think that the ones who struck it the richest were the people who supplied the miners in the towns such as Skagway.

We have a few more days on board and then, oh sigh, it is back to reality. I will spend a day in Juneau and then return to the lower 48, Miss Elsie the Cat and my little home on wheels. In the meantime…Oh wait they just announced lunch….time to go.