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 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.

 

 

The Alaskan Adventure Continues

This morning I woke up, opened the curtain, looked out the window and there were icebergs. Last night before I said good-night to an incredible sunset, an orca surfaced right next to the boat. How cool is that? I mean, really how cool is that?

We arrived in Tracy Arm around 8:30 in the morning. There were at least three glaciers that I remember viewing. Icebergs of all sizes floated around us. After another hardy breakfast (I am not losing weight on this cruise) we boarded the DIB’s (inflatable boats) and we went glacier viewing. This glacier doesn’t usually do much calving, yet, right there in front of us, pieces broke off and splashed into the water. It was loud and made me respect the true size of the icebergs that were floating around us. When you see an iceberg you need to remember that literally, you are only seeing the “tip of the iceberg”. There is at least 5-10 percent more of it underneath the water. They are huge. One of our crew tried to lift one of the small ones out of the water and even with the help of a fellow crew member they were unable to bring it up. When they tried again they were successful. Last night the bar tender was putting glacial ice in the drinks she was serving.

This morning I woke up in this beautiful little harbor, Taku Harbor. I am surrounded by green, healthy evergreen trees. There is another small boat sitting in the harbor. Today we kayak and hike. Almost every day we hike. Today will be the first kayak. I am looking forward to it. I love being on the water. I love to paddle and boat. 

This afternoon, I took the plunge and am now a member of the Orca Whale Club. So here is what I know. The water in Alaska is cold. I made a commitment to myself to do this and I have been successful. A rather meaningless point of honor yet a point of honor, still. 

As if this day could get any better, we saw humpback whales, lunge feeding. It is a behavior unique to humpbacks. The community, this time at least three whales, creates a circle of bubbles around herring and force them to the surface. The whales then lunge toward the surface bringing the majority of small fish into their mouthes. We were told it is not a behavior that everyone gets to see. How cool is that?

And so my Alaskan adventure continues. The scenery is amazing. Everything is green. The mountainsides are green. The water is green and the sky has been amazingly blue. Our boat crew have been very good at keeping us dry in this wet and moist rainforest. The weather has been surprisingly pleasant and there is more sun than I expected. 

Yesterday afternoon I sat on the upper deck in my t-shirt and sandals. Oh I had pants on too. I have discovered their library and I spend at least a little of each day reading and spending quiet time to reflect and recuperate from the other 40 plus people on board the cruise. 

I am doing well, being consistently around the largest number of people, since Jim died. I have been avoiding large numbers of people since he died. I am way more comfortable with small intimate groups and I still favor them. This group however is eclectic. They are from around the globe. We share a love of the wild and most, if not all, believe in conservation and the environment. There are people for New Zealand, Australia, several Alaskan residents and the rest are from the lower 48. Fifty and up is the prevalent age. There are many single women, one single man (he better watch out) and many couples. The conversations have been interesting and fun as we discover each other. 

Each evening we have a talk by the crew. Here are a few of the topics. 

  • The importance of food to the Kake people, (Tlingit tribe). This was presented by one of our naturalists on board who is a member of this small community.
  • Lichen and Fungi and the symbiotic relationship they have. 
  • One night we were read a story. Ah, ghosts and more abound in the mountains near Frederick Sound.
  • We learned a lot regarding Humpbacks and other whales of the Alaskan southeast. 
  • During our visit to Frederick Sound the Lighthouse Keeper came over to speak to us about the light house (he takes care of the building, the Coast Guard takes care of the light). He had the most amazing recordings of Humpbacks communicating under the water. There are researchers that spend time at this lighthouse hoping to learn more about these marvelous huge creatures. The lighthouse is open to the public and you can spend a night or nights there as well. Of course, one would need to figure out how to get there. Even that is manageable, it can be done.

It is hard to believe that there are only four days left and then I will step ashore, once again. When we cruised closer to Taku Harbor I began to see power lines. I found myself a little bit unhappy to see signs of civilization. I like being out in the wild, especially when I can be warm, dry and fed. I am being well taken care of. We are all being well taken care of. I sleep well at night, probably the best since Jim died. Fresh air, sun, hiking, and good food may have something to do with this situation. I love to sleep and wake refreshed. All I have to do is sit up, pull up the curtains and I am greeted by beautiful mountains, the forever expanse of ocean, all while I am curled up in my warm bed. Not too bad a way to start the day.

Into the Wild, Well, Not So Wild, North

Good morning from small ship cruising on the inside passage in Alaska. It is not even 6 am yet and I am wide awake and ready to roll. It is hard to sleep when the sun rises shortly after 4 am.

The beginning of this journey to the north has been interesting and fun and awe inspiring. I have met wonderful new people, Jeff who housed my friend Leslie and I in Sitka, was the perfect tour guide. We hiked, we talked, we ate, we did yoga (Leslie teaches) and I personally repeated “Wow, Isn’t this beautiful?” several times while we wandered the darling town of Sitka. This phrase has continued to repeat itself since boarding our small ship.

The scenery is amazing. Mountains everywhere. Trees everywhere (it is a rainforest). The people I am traveling with are very eclectic, from all over the world and enjoyable. I have been fascinated by the lives of my fellow passengers. Some of the passengers are from AK. When you live in such a large state, you have to play tourist to see where you live.

While I am wandering the north country, life continues to go on in the lower 48.

  • My great nephew had his first post chemo scan and, thankfully, it is clean. We are all so relieved.
  • Elsie is adapting to life at Linda’s and Steve’s in Boise. It appears all the animals there have called a truce and are pleasently ignoring each other.
  • My RT, EmmyLou, has been in the shop and when I have reception I have been emailing Nelson’s RV and Linda (same friend as in the bullet above) has been managing the interaction between me and the shop. What a good friend. My propane leak is fixed (yay) and EmmyLou is getting ready to roll. It is hard to manage this at a distance.
  • Hopefully all my friends are doing well. Reception is spotty at best where I am so I am out of reach often. Today I am in and I am up early and I am writing.

This is Alaska, so far. Mountains, Eagles, Bears, Whales, Mountains, Dolphins, All kinds of ducks and more. It is relaxing and adventurous all at the same time. Yesterday we visited a Tlingit Village, learned about the life of the local tribe and watched and participated in dancing. It was delightful and informative.

Leslie and I are traveling well together, although this is only day five (Hee Hee). We are good roomies. We are not glued at the hip so we wander off on our own explorations as well as create time to explore together. This is an ideal travel relationship. When we are together, of course, we talk, it has been several years since we have seen each other.

I am off for another day of exploration. I am forever grateful that so many “have my back”. I carry all my friends, known and unknown with me wherever I venture and I am so thankful for the silent and strong support I feel as I adventure into the Wild North.

Sorry no pics because WiFi wont let me download them. They will come later.