Moments in the Journey

Three pictures for you: a "big" conversation with Rachel and Lucas (grandchildren) earlier this month who are with their mom; friend Leah - who comes regularly with the gift of healing massage; and a morning in bed with tea and the newspaper.

A Fair Day!

Although yesterday was not a top 10 day, some vomiting and huge tiredness, today has been a fairly good day. This afternoon we were out of the house for three hours in order for Shelley to have a "Wall-Motion Test" that was ordered by her cardiologist to assess the strength of her heart. Last week she had to postpone the test so we are encouraged by her ability to get out. She is also able to take in more nourishment, so that too is good!

Dance Lessons

Although it is a sleepy day today, nausea has not shown its face!

A friend recently sent us a poem and, in it, we read, "Life isn't about waiting for the storm to pass. Life is about learning to dance in the rain." We are doing our dogged best to learn the new dance steps and are quite grateful that GB has (so far) refrained from stepping on our toes during Monday's and Tuesday's dance lessons!

Last night we opened an old e-card sent from one of you and a virus tried to get into our system. We quickly shut down the computer and invited our "Computer Guy" friend over to check the system (thanks Ted!). All is well but we thought we should let you know that we won't be opening anymore e-cards any time soon.

By the way, over the weekend friends counted the cards on our bed-sitting room walls. To date the count stands at 187! What a lot of wonderful energy surrounding us!!! How blessed we are by the care and concern that comes to us in countless ways! With profound gratitude to all of you for being present in our lives!

2nd Encounter

Just returned from the second chemo treatment. GB showed her softer side today - no stinging or burning during the encounter. We like this side of GB and hope she isn't being passive/aggressive. Will wait and see what the day brings!

A better day!

After a good night's sleep, Shelley greeted the morning with a desire for porridge and, as the day unfolded, her deep desire for constant sleep abated. Our wonderful palliative nurse (Monica), who keeps a close check on Shell, phoned last evening and "thought it would be a good idea to check Shelley's blood work today" so contacted the doctor who issued a requisition for the V.O.N. to draw blood when they were here for their regular visit this afternoon. Monica wanted to "double check" that her need to sleep, her times of disorientation, and her dizziness, weren't problems related to her electrolytes.

At this point, Chemo is still a go Monday morning unless Shelley feels too unwell Sunday night to go forward. In that case, it will be postponed until the following Monday. However, my courageous partner fully intends to be well enough for her second date with GB. This time she will be exposed to 15% less of her and be given I. V. nausea meds before their encounter. The brutal sides effects of G.B. mystify the medical folks who say "Shelley is unique." And? So? What's new you may ask!

Some progress

First ten minutes outdoors since Monday! I'm taking in a bit more food, have a little more energy, but am still sleeping most of the day.

Yeah!

Shelley had 1/2 cup of Chicken broth and 2 teaspoons of ice-cream for supper that stayed down! Although the day began with her head in the toilet, the nausea now seems to have subsided. Here's hoping the breakfast order is porridge! Might as well think big! :-)

Still looking for the "Better Tomorrow"

The afternoon was spent at the Cancer Clinic receiving intravenous re-hydration and nausea medication. GB is not showing her best side yet!

The Day After

I am feeling wretched – well at about 5 out of 10. Tomorrow is supposed to be a better day so I am off to bed in order to greet tomorrow as soon as possible.

First Chemo

In Shelley's words: "I had chemo this morning and they're absolutely right, you can feel quite crappy afterwards - nausea, chills and a real desire to be cuddled up in a warm bed. I will check in again when I'm on the other side of this, hopefully in a day or two.

Clarification

Sorry, I think we confused some of you yesterday. Shelley will be going forward with GB chemo treatment on Monday (any chemo has a 50/50 risk of triggering another WPW attack but our cardiologist now has intervention measures in place should one occur) and, when all is sorted out, Nortryptline will be replaced by another effective nerve pain medication. Although it may have worn off eventually, the side-effects of Nortryptline have left Shelley with continuous and incredible drowsiness and reduces her ability to stay focused. She is not pleased with this turn in events and is hoping that its replacement (perhaps by Monday) will enable her to stay more alert so that she can get on with the many projects she has lined up for us.

Cardiologist Consult

At our visit with the cardiologist (Dr. Howlett) this morning, we learned that Gemcitabine (we call her by her longer name when we are perturbed with her) doesn't get along well with W.P.W. (Wolf Parkinson White Syndrome) and there is a 50/50 chance of additional heart fibrillations because of her presence in Shelley's life. Sometimes relationships can be trying and choices need to be made. Corrective surgery could be done on Shelley's heart to stop the attacks but both she and the cardiologist feel that chemo treatment is the first priority. The cardiologist also said that Gemcitabine is not fond of Nortryptline (Shelley's new and "seemingly" effective pain medication), so consults are already afoot in search of other companions to suit Gemcitabine's demanding nature!

A New Friend

A new friend has come into our lives! Her name is Gemcitabine. We’ve named her GB for short. She’s not terribly charming but, then again, chemo drugs aren’t known for personality! We understand it will require a bit of energy to be her hosts but, in time, we anticipate benefits from the effort. Initially, whenever they encounter each other, GB’s presence might give Shelley the chills and perhaps flu-like experiences for a couple of days, but that should be it as far as any downside to their relationship.

The budding of our friendship with GB begins on Monday, the 17^th, at 11:30 A.M. Shelley will spend time with her for half an hour every Monday morning for three consecutive weeks and then they will take a break from each other the following week. This is to be the planned cycle for their (hopefully) long term relationship. Dr. Doreen will check in to see how the two are making out at the beginning of each 4 week cycle and will likely schedule a CT Scan for the end of October.

The good news of this budding relationship is that time spent with GB is only one day a week. This means that our lives will be minimally disrupted. We’ve also learned that her presence in our lives means that Shelley’s pancreatic “symptoms” should be alleviated to a fair degree and that, perhaps, her tumor might even shrink. However, as Dr. Doreen said, “if you experience your symptoms being alleviated Shelley, we consider that "success" and will ask you to continue befriending GB as long as that is the case.”

We’ve come home tired, relieved, hope-filled, and beginning to make plans.

Please continue to keep us in your thoughts and prayers especially as we work toward establishing a good relationship with GB in hopes that she will reciprocate! We are constantly strengthened by your care and concern!

New Challenges

(Diane writes) - Dr. Lynn McAslan (our wonderful palliative care doc) and her (also wonderful) nurse, Monica Flinn, spent an hour and a half with us this afternoon. Nerve pain, which unfortunately has made itself known in Shelley's back over the past three days, has become the new challenge for pain management. There are several options that can address this new reality and Shelley is beginning with option number one which, over the past few hours, is revealing itself as "hopeful." The palliative care team will closely monitor her response to the changes over the next couple of days.

Dr. Lynn was extremely pleased with Shelley's physical progress and also with her increased energy level. She was also very hopeful that Dr. Doreen will recommend chemo treatments this Thursday when he sees how well she is doing.

All in all, a mixed past few days with major pain appearing (mostly over 5-6 hours in the morning) and some great walks through the hydrostone area with its "back alleys" (like Shelley's hometown in England) in the afternoon.

Additional Pictures

The first picture is from the study that is presently being re-organized. The second one is of our bed-sitting room.

New Skills

Today is our first attempt at uploading pictures so you can see us and our changed context!

Getting a Rhythm

A quiet and gentle day!

We have just had some time with Quaker friends sitting with them in silence – taking the time to enter into/hold onto the fullness of life.

Our days and nights are beginning to take something of a regular shape which, of course, will be totally shifted if and when the chemo begins in a week or so. In the mean time, we are enjoying the occasional short visit from close friends and even beginning to think about times when friends from Ontario might make jaunts down. All this is somewhat time bound by the course of chemo I will have (says she hopefully!). On that score, I am preparing myself for the oncology assessment this Thursday. I continue to eat well and I’m developing more energy by taking daily “walks”. In addition, my bodily functions are beginning to find a more “normal” pattern. It is quite amazing to hear myself wax on and on about the function of bowels.

Being Sunday (and cheap telephone rates), I had a long conversation with my cousin Doris (in England) who is in her late seventies. It was Doris’ mother (Aunt Thirza) who raised me - so we have some early years when we were, essentially, sisters. The distance is hard for Doris so she continues to search for ways to be in touch. Recently, for instance, she sent me a remarkable card painted by one of her granddaughters that included a tea bag and a picture of people at a tea party. In it was a written invitation, “Would you like to come for tea?”

Because I am feeling much stronger, this is the first day we have not had the V.O.N. drop by to take a pulse rate, blood pressure, and listen for “belly” sounds etc. The service is just amazing! How blessed we are that we live in a country where such a wonderful service is free.

You brief calls, e-mails and signs of your care are dearly cherished.

.

Visit with the Surgeon

Just came in from a walk around the Crescent – about 100 yards. We went to see the surgeon on Wednesday who will see me again in about two months. The Stent seems to be holding. I also had the chance to consult with a doctor in the oncology department who explained to me that, normally, a person needs to wait at least two weeks following the surgical procedure before chemo treatments can begin. I will keep the scheduled appointment with my original Oncologist and see him next Thursday, the 13th. At that time, it will be determined whether or not I have sufficient energy and strength to go forward with chemo. Apparently a person needs LOTS of energy to withstand the initial effects, so I want to start out on a strong foot. My goal then is to gain energy every day so that in a week’s time I will be ready.

Gosh I reall understand the meaning of the phrase "to take one day at a tiime"

Once again, we are working our way into yet another new realty. Returning from the hospital on Saturday gave me an appreciation for those who say "I am all washed up" or "I just ran out of steam". I have never had the experience of Saturday where I managed to get up the stairs and across the floor to the chair but was unable to lift my arms, legs or a cushion once I arrived there. I was completely spent as well as totally parched and in desperate need of water.

The last couple of days we have, once again, been replenishing the larder - water, juice, food, rest etc. - so that I have some reserve for the day. My "recovery" is coming along more quickly than when I first returned home from the hospital one week ago today.

My routine has been to wake up around 5:30 a.m. and head to bed around 7:00 p.m. Each day the Victoria Order of Nurses (V.O.N.) comes to do blood pressure checks etc. The present concern is to get the bowels moving once again. The nausea has disappeared and the pain is well regulated by the drugs. When there is pain, it does seem to be more related to bowel pressure than anything else. Close friends and family have been coming to stay with me while Diane does various errands around town.

We are in the process of putting a bathroom in the study on the ground floor. It is already plumbed for a sink and toilet so it is just a matter of linking stuff up. Today, the Red Cross delivered a hospital bed that will also be in the study/den. It will make it easier for me to rest before heading up to the main floor whenever I arrive home from medical appointments.

I have saved up the energy to make one trip down to the study to do this and hope, with the changes on the ground floor, to be able to come down once a day.

This note came across my lap today - "For all that has been, Thanks.
"To all that shall be, yes. "

Gosh doesn't this life give meaning to "taking it one day at a time"

Gosh doesn

Oops!

Between Shelley's entry and my "helpful?" editing of Friday's blog, we managed to communicate a wrong message to you. The blog and emails continue to be the best ways for keeping in touch with Shelley, not the phone. Calls still require a bit too much energy from her just now. Thanks!

Four Men in the Bedroom

When four men visited us at 5:00 A.M. this morning, they asked Shelley what she thought of having four men in her bedroom. She said, "I don't mind, but my partner might!" Shelley decided to have another 'Wolf Parkinson's White syndrome episode (rapid heart rate) which meant another trip to the hospital - this time enjoying the bumpy ride of an ambulance. All was stabilized within an hour and a half and by nine o'clock we were back in our home. Shelly now has meds to take should she have another episode "to keep the four men out of her bedroom!" :-) So - today is a gentle recovery day for her and one in which we are fondly remembering Sept. 1 twelve years ago when we celebrated our covenanting service in the home of our friend Pam Brown.