Monday, January 31, 2011

Ron Harris, You Complete Me

Yesterday while doing a couple chores I felt different. I didn't quite put my finger on it until I was walking along the boardwalk taking Winston for a stroll. I am feeling incomplete; there is half of me missing. This is not to say that I am not in my right mind, this is not to say that I cannot cope or make decisions. It means that I am at the marina with a great feeling of emptiness. Ron and I, in the true essence of the meaning shared a lifestyle. Something as simple as doing dishes is poignant chore for it was Ron who liked to do the dishes. Goddammit, he should be here doing the dishes. We would have great conversations while he did dishes and I worked on other tasks. I miss our everyday simplicity of just being.

Believe it or not, as soon as I get in the Volvo to head to the hospital, I immediately start to feel whole; I feel strong by the time I reach the hospital and am able to greet Ron with a smile, a hug and a kiss hello. I, too, see his face light up. Ron Harris, my husband, you complete me.

Where does the time go. Yesterday and today literally flew by. Neighbour Dave helped me change the macerater pump on the toilet. I am not electrically inclined so needed some assistance connecting the wires. It is not done the same way as with a house. Laundry was done so Ron could have fresh undies. OK, they are not undies and he is appalled when I call his jockies undies.

Doug and Karen, Ron is so enjoying the down quilt. Lyn, Kathy, Len, Doug, Tom and Keri and Spiff, thank you for your visit and of course your medicinal conversation about boats and bringing on the laughter. Tim, thank you for bringing Winston out for a visit. Ron finds joy simply by having Winston in the room with him.

Today thanks to Ken, Penny, Helen, Garth, Len, and Dawna another great day was had by Ron. Also, Ron was allowed out for a few hours. He must be demonstrating good behaviour. With Garth and Helen, we went into Sidney and walked along the waterfront, purchased slippers for Ron and indulged in a coffee at Starbucks. Winston spent the day with us and thank you to Tim for picking up Winston at the end of the day.

Just so you know, Ron has few needs. Food gifts in the past few days have included soup, cheese, crackers, chocolate, cookies, popcorn, peanuts, jujubes and fruit. Beverages include (yes believe it), Smirnoff Ice coolers, Pineapple coolers, red wine and two brands of scotch. Ron likes to have a night cap so indulge he will.

Ron's room # 1464 was great. It was at the end of the hall so not a lot of traffic passing by. It has a view of the field and best of all it is private - as all the rooms in palliative care are. The nurses have fallen in love with Winston so he comes in the back door and settles on his doggy bed nest to Ron's bed. Ron said he was very comfortable. We knew there were larger rooms and today I was thinking of how I could tactfully find out if Ron was eligible for one of these rooms should one become available. Not ten minutes after I had this thought did the nurse come in and ask me to come and look. It was a much larger room and Ron could have it if he wanted. I said, "Of course!". While we were out, Ron's belongings and stuff was moved to his new room. It has a separate door to the outside - a Winston door. I have come to the conclusion that I am not sure if the nurse offered it for Ron's benefit or Winston's.

Tomorrow we are looking forward to Stewart, Clare, Juliet and Amelia coming down from the Comox Valley to visit Poppa Ron.

Sunday, January 30, 2011

Love Me Tender

Today we had an early start. Ron and I met with Andrea in his room to discuss further the results from the CT scan. We had one more item to discuss and that was Ron's abuse of the system. Yes folks you read right! Ron was worried that because he had two good nights sleep, he felt that he didn't belong in the Palliative Care Unit. Andrea was very stern in reassuring him that palliative care is for people like Ron who need to be in a reassuring environment by having medications monitored while getting pain and other symptoms under control. Ron, you silly goose. No more talk like that or you will have to deal with your wife!!

Today Ron was just as zoned out but not talking to the Starship Enterprise. Visitors started to arrive by 1300. Ron was very happy and chatty. Thank you for delighting Ron with your presence and listening to his stories.

Also, thank you to Doug and Karen for the twin size down quilt for Ron's bed and the magazines. Thank you to Eddy and Dawna for the Chinese food for supper. Thank you Tim and Tara for bringing Winston and lattes. Ken, thank you for the DVD's. You chose well.

Len B,and Dawna thank you for sharing Ron's story with Doug. He has contacted me and as it should be between friends, you can simply pick up where you left off.

It the truth were known today, I had a splitting sinus headache. Ron knew this and several times requested that I just rest. I am a Capricorn so that is not easily done when there are things to do. After Doug and Karen left, Ron convinced me to take the bed and snuggle with the quilt while he addressed his email messages. Reluctantly I did as he asked. Ron closed the door, closed the blind, put on smooth and quiet music and tucked me in. Tenderly he kissed me on the forehead and sat near while I slept. I felt completely loved by these so simple yet loving gestures. Sweet dreams.

Friday, January 28, 2011

Visitors To Saanich Peninsula Hospital Palliative Care

Many of you have been asking about coming out to visit Ron. He is up to having visitors and would love to see you. He only asks that you check with me to ensure that y'all do not arrive at the same time on the same day. Please call or send me an email with your suggested time of visit and together we will finalize a date and time.

See you soon!

Earth To Spock

Last night Ron in palliative care and me at home. We both had good and much needed sleeps. As I arrived this morning, Ron was being whisked away for a CT scan. Ron's son, Ryan, was visiting so the two of us got a few minutes to catch up. Ron was soon delivered back to his room.

I soon realized that my husband was drugged like I had never seen before. Keep in mind, Ron was a goody two shoes growing up - no smoking, no drugs. His vice was red wine. Being under the influence of drugs was a new experience for Ron.

He was still in his jammies, laying comfortably but half sitting up in bed. He started a conversation with me and Ryan and just zone out. This was very strange for me to witness. He also picked up the phone in the room and jokingly said 'Earth to Spock, earth to Spock'. Ryan and I chuckled and Ron said it was like he was on the Starship Enterprise. Well, you couldn't help but laugh out loud. Ron was in and out of conversations most of the day. While I was conversing with the social worker, Ron would just jump in and start talking about his own version of our conversation.

The CT scan. While there is good news that the liver has not been compromised and nor has the abdomen. The heart has been compromised. The right lung is showing signs of metastasis, small tumours but tumours all the same.

We had a good afternoon and evening. It was good because Ron was pain free and relaxed more than ever. He could sit for long periods of time with out being anxious and feeling a need to walk out the pain. We played crib. That too was funny... he just cannot count a crib hand on those drugs. I will have to sharpen him up before Bill arrives to have a game or two next week.

Ron also ate well. Thank you to the Revenue Solutions Branch who contributed to the food basket for me to take to Ron. He enjoyed a bit of everything; soup, cheese, crackers, homemade tarts. I enjoyed the delicious licorice! We have leftovers for tomorrows lunch.

Tomorrow I will return to the hospital bright and early. Ron and I will be talking to Andrea and the radiologist about the swelling and what is causing it. It remains a mystery.

We will see what the next few days will hold. Fingers crossed for all things good for Ron.

Thursday, January 27, 2011

My Heart Says NO!

My heart says no, but my mind says yes. It was an incredible conflict I faced today.

My heart ached for everything to stay the same; to be all right. My mind said that it is OK, it is all about Ron. This great tug of war between my heart and mind came to light when we realized it was time for Ron to be admitted to palliative care.

In this blog we have chosen to keep it light. I find as we support Ron in his journey, it is more difficult to gloss over the reality. I believe in my heart that Ron has gallantly endured more discomfort to stay aboard Ta Daa as long as possible. The truth is that this sinister mass consuming his chest cavity and organs is taking its toll - physically, emotionally and mentally - each and every day.

Today while visiting Andrea, his esteemed physician, Ron stated it was time for him to go to palliative care. He has not slept a full night since November. We knew this but he felt the snippets he was catching was enough. Couple the lack of sleep with pain that would not go away and you get one fatigued, exhausted man. While explaining how he felt and the frustration, tears welled up in his eyes. Unfortunately, a bed was not available. Ron settled for spending one or two nights at Doug and Karen's. I had, I thought, a couple days to digest Ron's request. To Ron's benefit, a bed became available.

This meant, for me, Ron likely will not set foot again on our boat. Our boat was not my dream, it was not Ron's dream. It is our dream. Wow, I need to work through this. My heart wanted to deny and scream NO, it is not time for us to end our dream - at least not like this. My mind admitted that this was right for Ron and this is all about Ron, his comfort, his peace of mind and contentment. This is also Ron's way of continuing to take care of me. He worried about situation that would be next to impossible to deal with while living on a boat.

We shared many teary times today. I will admit that this whole week has been weepy for me. After picking up a handicap tag for the car and a wheelchair we swung past the boat to get gear for Ron to take to the hospital. Every moment was agony. The drive to Saanich Peninsula Hospital was silent. I asked Ron if he was hungry. I can't believe it but he requested McDonalds drive through over hospital food for supper.

Once we arrived at palliative care, Ron felt a great sense of relief. The nurses made sure he was comfortable and were more than attentive to his needs. Tonight his meds were slightly adjusted. Tomorrow there would be a consultation with the palliative care doctor and Andrea. Andrea wants to find out what else is going on to cause discomfort in his hip.

Ron's spirit has stayed strong. Ron's sense of humour has not diminished. Ron's physical house for his body is severely failing him. Earlier I mentioned the mass consuming his chest cavity. This has caused obvious physical change in Ron. He has lost weight, his legs and left hand are swollen, his gait is extremely impaired, his breathing is shallow and often laboured. It does not matter the physical, mental or emotional changes. The Ron today is still the man I fell in love with and married on August 16, 1997. Nothing will ever change that.

Tuesday, January 25, 2011

Ripples In A Pond

Ron and I have often talked about how diverse you, our family and friends are. You come from all walks of life, you come from all income levels, you come from your own unique experiences. What you share in common is your love and support of Ron since he embarked on his journey of living and coping with cancer. Also, your love and encouragement for me. We receive phone calls, we receive emails, we receive visitors and we are invited into your home - all are most welcome and all are crucial for our mental and emotional well being. I want to share with you, some of our experiences.

You have all heard of our generous friends, Bill, Leanne and Gracie. Their home is our home away from home in the Comox Valley. And... they dared to travel with us knowing that the unexpected could happen and knowing that we would all just deal with it.

Ron's workmates, just today, filled our hearts with an abundance of love and compassion as they swarmed Ron in the hallway. It brought us both to tears. And Cheryl, your offer for you and Ted to help me with anything with the boat anytime is greatly appreciated. I am truly hoping that we can take Ron out for a sail when the weather warms. I can also learn a thing or two from Ted.

Penny and Ken, your emails are timely and your words eloquent. Penny, your visual I want to share with the readers. Penny writes that Ron and I are like a pebble dropped into a pond. The ripples that spread out from it are the family and friends encircling us. That is exactly how we have felts since day one - August 19. We have felt embraced, warmed, hopeful, loved, energized and much more because of those of you caring to stay close to us while we take one step at a time.

MG keep your little emails coming. Your snippets of kindness are as significant as a one time expression.

For the remainder of our friends and family, many of you have been noted in previous insertions If not, I have not doubt you will be noted in the future for a memorable act of kindness. Your kind gestures are in no way any less appreciated than those revealed above. Our hearts, even through difficult times are filled with joy because of you!

Monday, January 24, 2011


I was dragging my feet for fear of pain – emotional pain from writing about our recent news. You see, the day after getting home from Disney World, Ron had an appointment with the Radiation Oncologist. This visit did not result in good news. We found out that the cancer is spreading, again, faster than we ever expected. It is now affecting the heart and the diaphragm. At the rate of growth, the doctor suggested that Ron could be in hospice care within two months. Wow... there is a time line for you – two months, eight weeks, sixty days, one thousand four hundred forty hours. Of this time we are told that there will be ever changing symptoms as his physical health deteriorates.
It is pointless for me to drone on about how shell shocked we were at this new development. It is also pointless for me to go into details about the implications of involving the heart. I also choose not to lay out the details because it is too emotionally painful.
Today we were, once again, at the doctor’s office. She has sent Ron for blood work to reveal whether or not there are implications of cancer on the liver. Also, it is suspected that the lymph nodes are involved. Pain medications have been increased.
As I was walking away from the boat today I had an epiphany. Once Ron declares that he needs hospice it will be the last time he will be on the boat – our home, our dream. When we hold hands, I will not know if this the last time that he will give my hand a little squeeze. When we hug, I will not know if it will be the last big hug that leaves me feeling loved. When we kiss, I will not know if it will be our last kiss that seals our love.
We have decided that we need to process this information, dig deep and find strength to march on as we always do when times are tough. My new fear is that I am not the woman of strength I believed to be. Ron is handling this with great dignity. Husband, I am so proud of you!

Ron, the first time you held my hand I felt loved and complete. Know and trust that I will hold your hand as we endure this journey that will take you to your own destination. I love you so much.

Catch Up On Disney World

These are my excuses for not updating the blog: technical difficulties while in Orlando, I am not well and suffering from bronchitis, and quite honestly, procrastination. Why the procrastination you might ask. That doesn’t match Janice’s style. Before I answer let me catch you up on Disney World – The Happiest Place On Earth and Where Dreams Come True.
To summarize, Disney World is made up of four theme parks and Universal is made up of two theme parks. We managed to do all but one of the Universal parks. Ron had the greatest time. All this came with challenges. You know that we used wheel chairs and a scooter for Ron’s ease of mobility. What you do not know is that he suffered from inevitable swelling of the feet, ankles, knees. One arm, also caused us some concern. We were not expecting this symptom. He also suffered from a shortness of breath for longer periods of time. It became such concern for Ron that he considered coming home early. I told him to just say the word and I would be on the telephone to make the arrangements. Ron felt confident to go one more night before making the decision. I think Ron’s determination to fulfil his dream of visiting Disney World helped him through the last week. He knew that if he bailed, he would never be back. Ron’s energy improved and we soldiered onwards.
So here is a description of our gang in Disney World; two women PMSing, a three year old, a man with one functioning lung and a man who is glued to his blackberry. We had the best time.
Ron says that when you ride the extreme coasters you need one lung for breathing and one for screaming. I screamed while he breathed!
Ron’s highlights of the trip: spending time with me, Bill, Leanne and Gracie, seeing Disney World through the eyes of a three year old, Harry Potter, Epcot Centre, Animal Kingdom, the size of the theme parks and the understanding and tenderness of our friends.
Thank you to Len R and Len B for driving us to and from the airport. It is not that I was too cheap to pay the parking fees, I just didn’t want to leave the new Volvo there.

Saturday, January 15, 2011

Scoot Harris aka Ron

Ron has been having a blast on the scooter. I do believe in an earlier post I mentioned it is the best thing we have done for this trip - renting an electric scooter.

We started out thinking we would get a wheelchair. Julie at my work suggested an electric scooter for two reasons: one, none of us are in shape for pushing Ron in a wheelchair for hours around the theme parks and Ron is in no shape to wheel himself. Two, it gives Ron some independence to go browsing on his own with needing one of us to accompany him.

The scooter was delivered to our hotel, the Hilton. They have a bus shuttle which we used daily while patrons of the hotel. The first day of Ron on the scooter and using the bus was hilarious. The bus came. As Leanne, Bill, Gracie and I stood back on the sidewalk, Ron backed the scooter on the ramp and the driver activated the lift. Once at bus level, Ron drove and parked the scooter in position in the seating area. The driver was going to strap and anchor Ron in. Ron stood up and said "Look! It's a miracle, I can walk!". The bus driver, a tall black man, did a Scooby Doo arghhhhh and we all burst out laughing. We couldn't stop... the timing was impeccable.

I also mentioned that Ron has run over my foot, his own foot, rammed Gracie in her stroller and also rammed the entrance gate to Disney World. He has also gotten to be a pro on the tight corners as well as maneuvering the crowds. The people themselves are a mixed bag of being very polite to people on scooters to being extremely impolite. Ron is dealing with it in stride but does have a new appreciation for people with disabilities.

The scooter has been fun for Gracie. She periodically hops aboard and goes for a spin with "Poppa Ron". It is fun for both of them - she lights up his face with her hugs and attention, Gracie gets a ride and a rest.

We are thinking of the logistics of owning a scooter while on the boat. Storage may be a challenge but it is a thing of beauty for Ron for getting around. He can scoot and I can run beside him. We will have to look at the price, models and if there are used ones. Just a thought for now.

And For Everything Else There Is Mastercard... Or Not

We just cannot go anywhere without incident. Just go give you an example, five years ago Bill and Leanne joined us in Disneyland. The guys made secret arrangements. Somehow the communications got crossed. Bill and Leanne were missing in action for an hour or more. Bill had our cell number which was at home. Ron had Bill's home number which is in Kirkland so we had no way to connect except through positive thinking. Ron had to spill the beans that Bill and Leanne were in Disneyland and were supposed to meet us. Finally, we saw some Mickey hands coming our way... Bill and Leanne were attached to these overstuffed white Mickey hands.

We were in Hawaii with Bill and Leanne. Ron and I decided to renew our wedding vows. We had fleeting thought of it prior to leaving Canada but had not seriously made any arrangements. Being who we are, we decided to 'throw' something together. I found matching Hawaiian wedding bands at a jeweler - likened to People's in Canada. We found matching clothes; a dress for me, a shirt and white shorts for Ron. Did I mention there was a third couple, Nigel and Tammy. We met them for the first time on this trip however they are friends of Bills. Two nights before the renewal of our vows I excitedly pulled out all the wedding purchases to show Tammy. I had left said purchases downstairs in our rented house. Sometime after me and Ron heading to bed early (I was suffering from a cold) my bag of goodies was mistakenly thrown into the trash. We did not discover the missing purchases until late morning - after which the trash was taken to the end of the drive and scooped up by the trash collectors. We went to the main trash collection area on Kuai and realized it would be like looking for a needle in a haystack. Just think of Heartland dump in Victoria... We worked through the shock, purchased another set of rings - and I got a deal because this time at this store the lady was from Vancouver - purchased another set of clothes and proceeded with vow renewal as planned. But wait, did I tell you the local Minister had a crisis at home and showed up an hour late for our sunrise ceremony. All ended well as we renewed our vows with our own Hawaiian version of our words.

Now the Disney World story... I lost my Mastercard. We stopped at Walgreens to get Ron a heat pack. I (per usual) needed to find the ladies room before I busted a bladder. I had my little card wallet and placed it on the back of the toilet. Thinking of Ron standing in line, I quickly washed up and headed out of the loo. We hopped into the van and proceeded to the grocery store. At this time I had some words not to cool for a three year old. I had left my card wallet in the ladies room. We bolted back to Walgreens to no avail. No wallet which means no Mastercard, no driver's license, no condo key, no Disney World pass. Bill and I checked each till station in the store. I checked the ladies trash and yes even the feminine disposal. Leanne checked the trash outside. No luck. All this happened in ten of the longest minutes of my life. Ron had his card so I phoned to report my card stolen. I was told I would be sent an emergency card in twenty-four to forty-eight hours. #$%^ is all I can say but what the heck, things can always be worse. A couple Coronas softened the blow.

Next day, that being today, we were heading out and it was a miracle... my wallet appeared in my backpack. Holy Cow... how silly of me. I guess it was the 1.5 Coronas I had prior to going to Walgreens... I must have gotten a buzz and couldn't see straight. I phoned Mastercard but they cannot, would not reactivate my card as I had reported it stolen. I must wait for the replacement to arrive at our condo. Ahhhhh, life is grand when there are adventures! For Disney World there is Mastercard... for adventures with Ron and Janice - PRICELESS!

Thursday, January 13, 2011

The Happiest Place On Earth

Here we are in Orlando. As it has been some time since I have updated, I will make chronological entries and attempt to not miss anything important. We last left off where Ron and I were sitting in San Fran awaiting our flight to Orlando.

January 8
Our flight to Orlando departed a mere few minutes later. Nothing to be bothered about. What both Ron and I were surprised about is that we were travelling via Air Bus. This Air Bus did not hold many people hence the plane did not have a lot of room to move around in. Even I was getting a bit agitated at the cramped space. Ron was a trooper. The highlight of the flight was flying over Disney World at fireworks time. It was certainly a different perspective looking down at the fireworks. Try it some time.

Needless to say we were extremely tired by the tie we got to the Hilton Hotel. 11PM Florida time, 8 PM Pacific time. Keep in mind that Ron and I had been up since 3:30 AM. A long day indeed.

January 9
We connected with Bill, Leanne and Gracie. We had a pow wow (sp?) to decide what tickets to purchase. There are so many options: base ticket, park hopper 5 days, 7 days etc... Once we made the decision Bill and I made the purchase. We also marched to the nearest grocery store to purchase incidentals such as snacks, water, razors for hairy legs and the such. Then and only then it was time to hop aboard the shuttle and head to the Magic Kingdom. We were on our way.

We are now seeing Disney World through the eyes of a three year old. That would be Gracie. And we are also accomplishing and striking items from Ron's bucket list. Ron normally likes to do the wild rides but is a bit reserved. Our pace through the park is relaxed. Our excitement level is elevated. We are finally here.

Ron is becoming a pro with the scooter. We find ourselves walking in the shoes of others. How many times have you muttered under your breath about scooter drivers in crowded places. Well, now Ron is one of those drivers and he finds himself muttering at the pedestrians. In all fairness to the patrons of Disney World, I find that they are absorbed in everything around them except the people nearest them. There is so much to take in: sights - colours, shapes, displays, dancers, architect, costumes and more. Sounds - music, people talking, singing, booming of fireworks exploding, train whistles, kids crying, people laughing and more. Smells - popcorn, caramel, fireworks, hot dogs, lemonade, coffee and more.

Yes, we stayed for the fireworks and what a magnificent show it was. It is magical. It is romantic. It is breathtaking.

Ron's feet have begun to swell. It is not painful or uncomfortable for him, just annoying. We will keep our eye on this new development.

Scooter riders do have their privileges. We often do not have to wait in the lines and as often as not, we get the front of the ride car. Ron "The Benefit" Harris in Disney World.

Off to the hotel room for a night cap with our friends and to make plans for tomorrow.

January 10
It is the wee hours of the morning. Ron and I made our way back to our room about 30 minutes after midnight. I was about ready to crawl into bed and there was a knock at the door. It was Leanne. Gracie was throwing up all over the place. Leanne, it turns out, throws up when other people do. We rendered her useless. She sat up with Ron and I ran over to their room to lend a hand to Bill. My version of lending a hand was to take Gracie and cuddle her while Bill cleaned up the vomit covered sheets. Yes, tending Gracie also meant rushing her to the toilet to throw up some more and some more and some more. Finally, about 3 AM Leanne came back to the room and I returned to our room. It was a long night for all of us. In the morning, all the adults were tired and Gracie appeared to be back to normal.

Today we visit Epcot. While Epcot was enjoyable it was not y favourite. I found the country displays glorified shopping areas. I mostly enjoyed the Living Sea display and the Nemo ride. What grown adult would not enjoy climbing into a big clam shell following Nemo's story. Ron and I also waited (and it was worth the wait) to see Soaring. It is a type of hang glider ride. I will say no more for you will have to see for your self.

Ron's feet once again swelled. First order of business was to get those feet up and reduce the swelling. It appears to be working. Ron says he is fine and not to worry.

January 11
Today is Animal Kingdom day. Both Leanne and I found this park to be more relaxing than Epcot and Magic Kingdom. For me it was the greenery, live animals and the music. We strolled the different countries, went on safari and watched Nemo the musical. Ron, Bill and I went on the Mt Everest ride. I was a little concerned about Ron, his breathing and well you know... it is a very exhilarating ride. What can I say. As we went down the first dip of this coaster ride I asked Ron how he was doing. He said fine... he had one lung to breath but no other lung for screaming. I did all the screaming. At one point of this ride we were roller coasting backwards. Strange feeling, indeed.

Nemo the musical was very entertaining. I highly recommend it.

As the Animal Kingdom closed early we headed back to Magic Kingdom for Ron and Bill to ride Space Mountain. Leanne, Gracie and I went to Buzz Lightyear. My shooting score was so high I was categorized as a 'Space Ace". 449,000 points. I think I got lucky. Gracie liked the ride so much we went three times. As luck would have it, we also took in the fireworks again.

Ron had a great day and we have had a lot of laughs; mostly at Ron on the scooter. Since we have arrived he has run over my foot, he has run over his own foot, he rammed Gracie in the stroller, and he rammed the Magic Kingdom entrance gate. Not bad for the first three days.

January 12
Today we moved out of the Hilton to a rented condo in Kissimme. We have this unit for the duration of our trip. Bill picked up a mini van. This will transport the five of us and the scooter.
The condo is the greatest. We have two master suites with their own ensuites, a huge kitchen and a beautiful view. We can see Disney and Epcot fireworks in the evening. Today was also a down day from any of the parks. Leanne, Bill and I headed out to Target to stock the fridge with our own food. Ron stayed behind and rested. We all had a relaxing day and it did us all some good.

Ron's feet are still swelling. I have now put in a call to our doctor. Since she is not working today, we will hear from her or her assistant tomorrow. I have asked if Ron would benefit from compression stocking. They may help with the swelling. We shall see.

Saturday, January 8, 2011

Disney World or Bust!

Here we sit in San Francisco... it's OK we are waiting for our connecting flight. As I sit I beban to reflect on what it took to take this trip. First, must know that Ron felt, in his heart and soul, that if we did not go now he would never make it to Disney World. Who am i to stand in his way.

I have said it before and I will say it again, Ron and I plan for the what ifs. We over plan and plan for what could go wrong. We have always done this and always will.

Questions we had to ask ourselves:
1. Is Ron well enough to travel
2. Can we take his medications
3. What if the medications go missing
4. How do we efficiently get from one terminal to the next when changing flights
5. How do we best get around Disney World with a man with limited lumg capacity
6. And the list goes on...

With great resources we found the pieces falling into place. Once at the Victoria airport this morning I ordered a wheelchair to be waiting in San Fran and Orlando upon our arrival. This will assure that we can travel swiftly from one area of the airport to the next Little did I know the wheelchair came with a person. Best tip I ever paid for.

Ron has also ordered a scooter for Orlando. It will be dropped off when we arrive and picked up by the ScootaRound people when we leave.

Meds have been no problem so far...

The flight was two hours of a crying child. We expect his ears were bothering him but the added bonus was the massage effect when his feet kept kicking the back of my seat. All in a days travel.

Internet in the San Fran airport is limited to 45 minutes free so please stay tuned for more updates at our vacation experience unfolds.

We get to Orlando about 9 PM so will likely update blog tomorrow. Life with Ron is a journey so this vacation will be no different!

Thursday, January 6, 2011

"What is right with the world?"

This is a famous quote by Dewitt Jones, famed National Geographic Photographer. When he would arrive on assignment and, in his mind, there were too many clouds in the sky or not enough clouds. Perhaps the sun was too high in the sky or there would be no sun at all on that day. Whatever the reason for his shoot to be less than optimum, he decided to look at things differently. He decided to look at what was right rather than what was wrong. For Dewitt and other photographers the difference between a good shot and a great shot was as little as a millimetre; a millimeter to the left or to the right, a millimetre higher or lower.

You see folks, Ron and I (with thanks to my friend Caroline) were introduced to this concept a few years ago. Not only did it help with our photography, you could say it changed our outlook on life. Often we will say out loud, “What is right with the world?”.

January 4 we found ourselves at the doctor office. Stabalizing and putting Ron on a long acting formula is the goal. Ron had been taking medication every 6 hours. The long acting formula will mean he has to remember only twice a day – that will be a relief for both of us. After a visit to the doctor it was up to the Comox Valley for physio early on January 5.

Ron is receiving IMS treatments. There are many professionals who practice IMS. Believe me when I say, you will know when you have the right professional. Eddy in Courtenay hits the magic spots for Ron and he gets the relief he needs from his knotted muscles. This therapy, coupled with the pain meds is letting Ron sleep. If you didn’t know a sinister tumour was growing in his chest, you might not know there is anything affecting Ron’s health except for his shortness of breath.

Ironically, it was my birthday on January 5 and I was delighted to receive birthday wishes (and some wine) from family, friends and Ron. As I have not opened his Christmas card he wondered if purchasing a birthday card would be a waste of money – ha ha, Harris! I was having a good day and while it was very emotional, I found the strength to open and read the card. We embraced each other for several minutes. Nothing more needs to said about that.

A new symptom reared its ugly head on Wednesday morning – swelling of the feet and predominately the left foot. After consultation with the pharmacist in Comox it was time to head home and back to the doctor to sort this out. Does it mean more meds? We will see. I must say, medications are getting confusing but with both of us, we will sort this out.

We have also had a call from the Radiation Oncologist. We are thinking that they are rethinking the opportunity of having radiation therapy. We will find out on January 21, the day after we arrive home from DizWorld.

For Ron’s comfort, we have ordered wheelchair assist in the airports and a scooter for Disney World. He has been checking out canes. I asked what the heck for. Ron’s reply... while I ride the scooter, I can whack anyone in my way so I can get to the rides faster. The cane had butterflies on it so perhaps he is also getting in touch with his feminine side. All kidding aside, we have received great advice from reliable sources for making our trip easier for me and as enjoyable as possible for Ron. Two more sleeps and we are up, up and away! I will be taking my mini computer so stay tuned to the blog for Diz update.

For Ron and I, and with your help, we will continue to look at what is right with the world. We will continue to turn our days from good to great by moving a millimetre to the left, a millimetre to the right, higher or lower.

Sunday, January 2, 2011

2011 Will Be A Happy New Year

It has been quite some time since I have turned on the computer. I have numerous reasons with the foremost being Ron. It is no secret that he means everything to me; he completes me. So, to see Ron’s face pale with pain, his posture humped to find comfort or his conversations and focus fragmented it gnaws at me from the inside out.

The pain, so we thought, was due to a pulled muscle or stress culminating in his back muscles. Easy to fix one might think. Not so, we found out. I had Ron visit no less than five physical treatment professionals; chiro, physio, and targeted pain management. Oh, he did respond to the physical treatment albeit, temporarily. The week of Dec 20th to 23rd was difficult for me to leave him while I went to work. Keep in mind, we believed the therapy he was undergoing would do the trick and he would eventually be pain free. Surely by Christmas the pain would subside. Not so.

December 23
Ron, being the trooper he is, endured the three hour Volvo ride to the Comox Valley. It was the worst driving conditions I had experienced in years: rain, blackness, and wind. We were comfortable and safe in our new Volvo.

December 24
Bill and Leanne, graciously hosted our families at their house for Christmas Eve dinner, complete with Santa. We will never, ever lose sight of the depth of our friendship... you two have given new meaning to the word. We worked side by side to cook, tidy and set up for family to arrive. Gracie, Bill and Leanne’s three year old, was excited that our grand kids were coming over. They had a great evening together with Santa being the show stopper – he came all the way from the North Pole, so three year old Amelia tells us. Stewart, Meghan, Kirsten and Ryan, it made Ron’s Christmas to spend it with you and your families. You made Christmas Eve happy and joyous. Thank you for joining us!

December 25
Did you know that cancer does not recognize Christmas nor any other holiday for that matter. Ron managed and was able to add some humour to the day. We exchanged gifts. It was very difficult. As I observed his movements, his comments and his desire to enjoy the day, I could not help but wonder if this would be my last Christmas with him. Ron’s two kids, Kirsten and Ryan, joined us for breakfast before heading back to Victoria. The rest of the day for Ron was spent trying to find a position in order to sleep more than half an hour. Ron’s sleeps were more like power naps. He would swear he was in a deep sleep for a couple hours but it was only minutes. We had the best day we could, it was quiet but we were not alone. For me, being with Bill, Leanne and Gracie was consoling; it was vital. Ron’s sleepless nights continued, the pain continued despite the varied treatments.

December 26
Ron had reached the end of his rope. He requested a visit to emergency. It was not meant to be. The wait was 2, 3 maybe 4 hours before he could be seen. Ron could not manage the wait at the hospital; he could not be still. I felt desperate. Ron and I see ourselves as givers, not receivers. This whole experience has been humbling; taking, taking and more taking from caring and generous friends and family. In my desperation for Ron, I called on Eddy and Donna our good friends (Eddy, a physio). Could you come and give Ron emergency IMS? It is December 26 and I am frantic. We met Eddy at The Joint. We all had a little cry and a huddle. Yes, we still have moments of disbelief that this is all happening. Eddy was able to offer Ron some relief. We went home to Mulholland and Ron slept soundly for a couple of hours. Thank you, Eddy. We love you!

December 27
Despite all the physical treatments, the pain, In fact, intensified and a new dimension was added... pressure in the chest. Off to emergency we trundled. It was 3:00 AM. As we left the house on Mulhholland, Ron paused to comment of the twinkling stars and the clarity of the morning sky. He even thought we should be setting up tripods and capturing the stars on camera. He loves looking at the stars. When Ron writes me a card he often signs “ I will love you until all the stars fall from the sky”.

The staff at St. Josephs Hospital was wonderful. Ron had the full attention of one nurse who gave him morphine every 10 minutes until the pain subsided and he slept pain free. He had his heart checked and another CT (with contrast) done. The results... blood clots. As Ron slept, I silently wept. With Ron awake and digesting the news, the nurse gave him instructions on how to self inject the blood clot medications. Ron would have to inject each day for the rest of his life. OK, just a little bump in the road... it is not the end of the road.... it’s not the end of the road... it is not the end of the road. Once back home on Muholland Drive, Ron slept in the snippets he could find comfort. I slept for a couple hours and felt much better. I even slept through my ringing phone... a message from the emergency doctor. I listened, listened again and listened again. I jumped up and put the cell phone on speaker for both Ron and Bill to listen – ‘I apologize, there has been a mistake in the reading of the image, there are no blood clots.” I cannot explain how I felt at that moment. Jubilant comes to mind. That feeling was short lived as we still have to find the source of pain in Ron’s back...

December 28
A number of days ago, it was recommended we see an MD who practices (for lack of a better description) ‘needling’ for pain. He happened to call on Dec 27. As I was fatigued, I was not thinking straight and told him we would be home later on Dec 28. Ron could see him on Dec 29. This morning Ron’s sleep deprivation and grimacing reminded me that we needed to find some relief and find it soon. My telephone call and email to Dr Siren resulted in a reply call saying that he could see Ron at 1 PM today. We literally threw our belongings into the Volvo and headed for home. Once finished at Dr. Siren’s office Ron needed to head home to sleep. Again there was some relief. Tomorrow we visit Ron’s doctor, Andrea.

December 29
You gotta love drugs. Medication was ordered up! Between Dr. Lewis and oncologist Dr. MacPherson the news was delivered to us that the tumor was growing and starting to penetrate the chest lining. That is what is causing the pain, not a muscle as originally thought. That explains why Ron did not respond to any physical treatments. While we are extremely saddened that the cancer is spreading faster than anticipated, we are elated that Ron is on medication and has found some relief within a few short hours.

December 31

Doug and Karen, thank you so very much for making our New Year's celebration a happy one. You company, excellent food and of course copious amounts of wine were very much appreciated. We are thankful that Ron felt well enough to participate!

Conclusion To This Post
As I write this post, I have yet to open the Christmas card from Ron. I am so afraid it will be the last. In hindsight, I feel that I have been numb these past few days. People wishing me or us a Happy New Year catches me off guard. I have to stop, be positive and believe... it will be as happy as we make it.

Ron has no use of his left lung. The tumour is spreading faster than we like to accept. While we cannot see the cancer everyday Ron is living with the affects and symptoms; shortness of breath, fatigue, pain, numbness and tingling in left arm, and side effects from drugs. These are only the physical. I can only imagine what is going through his mind. Perhaps one day, he will write and share. I know he will when he is ready.

Ironically, a neighbour lost her husband early in the fall. She is facing the first year of occasions on her own. Periodically thoughts will invade my mind; will this be our last Christmas, will this be our last Happy New Year celebration, will this be my last birthday with Ron... these thoughts are invasions and not welcome. I have to take these stormings and deliberately push them away to let the positive thoughts of the moment flood my mind. I look at Ron, my lip turns up in part snicker, part smile and I know that I have him in my life today and tonight. Love is grand. He can still put a smile on my face, light me up and warm me from the inside out.

Saturday (Jan 8) we leave for Orlando, Florida. Ron wants to visit Disney World and of course Harry Potter!

A heartfelt thank you to Tim and Tara for offering to take Winston. Twelve days will be the longest we have ever been away from him in the ten years he has adopted us. We know he will be loved and spoiled while we are gone!