The Roads Less Traveled

Well, apparently we didn't have enough drama going on. We were only getting ready for my 97th chemo session, trying to coordinate two oncologists to talk with an ocean and a five-hour time difference between them, waiting for clearance of the new drug Avastin which could be the key to saving my life, trying to find ways to pay for this miracle drug, not to mention getting around to all my healers to help strengthen my body before I head back into action. Oh yeah, and then there's Christmas. But no, we had kick it up a notch.

On Wednesday last week we visited Dr. Raza knowing we needed a miracle. He had called Dr. Öberg in Sweden and they had made the plan. I would do three more rounds of chemo with Avastin which he agreed to prescribe as long as we pay for it. Luckily, my insurance company will cover 80% of the cost. We then went to see the oncology social worker to ask if there was any way to get help with the remaining 20%. She said they hadn't dealt with this drug in this way before because I am probably the first one in Canada using it for this kind of cancer. She told us the drug rep was in the hospital that day and she would try to see him. Then the miracle happened. She opened her door and he was standing there. In less than a minute she came back in and said, "Yes, the drug company will pick up the remaining cost". It saves us over $8000 a month.

So, we were all set. On Tuesday I would go in for bloodwork and start the sessions on Wednesday. It was Monday when the rain started falling from the sky in sheets, relentlessly. We walked down our driveway at midnight with a flashlight and saw that the end of it was nothing but a gaping hole. Water was shooting up out of the culvert and the whole Kentville Road was a lake of swirling water. All night the storm raged with thunder and lightning and trees swaying to the ground. In the morning we found out that the Nashwaak River and all surrounding streams had overflowed in a flash flood, blocking the main highway on either side of us and washing out roadways. 

We were stranded and desperately trying to think of a way to get out when Fred and Connie walked in the door. They had come to rescue us. Parking their truck on an old logging road, they had hiked through the woods along the ridge of the valley and then beat a path down to our house through the thickets. (They are jungle trained!)

We packed a backpack and headed out with them uphill, over brush piles, through raspberry bushes,  and across the torrents of water pouring off the hill, guessing most of the way, until we hit the woods road and the truck. Fred managed to drive out over fallen trees and rushing brooks, coming out into the sandpit above the flood waters. From there we took back roads to Stanley and down the Royal Road to Fredericton. You can always, always count on Fred and Connie to solve any problem and tackle anything. By 4 p.m.. I had had my blood work, we had picked up my anti-nausea drugs for the next day and were settled in the Crown Plaza for the night. We even had a little party in our room when Caroline, Bessie, Sylvia and Lisa came over with home-made pizza and drinks.  


It is now Saturday morning and I finished the first round of this treatment regime. The sun is beaming in the windows, a light snow has fallen in the night, the cat is asleep in front of the wood stove and the waters have receded as if the flood never happened. We are truly grateful for all the pathways that opened for us this past week, both figuratively and literally. All is well.

The Waiting Game

How much of our lives are made up of waiting? Waiting for a letter, waiting for someone to call, waiting for the kettle to boil, waiting in line-ups at banks or supermarkets, waiting for summer, for birthdays, for someone in your family to come home. It is Sunday night and a warm December rain is hitting the windows. Julie is playing the piano and singing while we wait again, wait for tomorrow when we will hear what the doctor has to say about my further treatment. Last week, in the 'waiting' room of the hospital, what did we do? We waited for the new oncologist to appear and beckon us into his office for my latest CT Scan report. I'm pretty sure we bullied the last oncologist out with our persistent positivity and proactive approach.

As it happened, the report was quite good with the cancer in the liver completely gone, the lungs clear, blood levels almost normal and all systems in top form. However, there is still some cancer caking in the omentum and it appears to have grown while it was reducing in all other areas. The oncologist said he was unsure where to go from here because most people don't live this long with this type of cancer and he has never had to go to plan B, let alone Plan C, D and E. He said it in a complementary way, such as, you have already beat the odds. Julie once more got on the warpath, researching, e-mailing, calling and borderline-stalking physicians for action. She contacted Dr.Öberg at the Centre for Excellence in Endocrine Cancer in Uppsala, Sweden. Dr. Öberg is on our team as we were there in the spring for testing and consultation. He suggested a regime that would have me on three more cycles of the chemo that I just finished along with the drug, Avastin. Now, Avastin comes with its own challenges, too lengthy to describe here, but none we can't conquer. My oncologist will take the advice of Dr. Öberg. Hopefully the two oncologists will talk tomorrow and make a plan for me, so we are waiting. Waiting, waiting waiting.

So, what do you do when you are waiting for something that could mean your life? Well, you go tobogganing. That's right, tobogganing. Take that cancer!!!! You make bread and a crock of beans. You pace. You pour a glass of wine. You flit from task to task, accomplishing nothing. You pour a bath that is too hot and get right out again. You do mundane things as if they are the most important tasks in the world. (Julie vacuumed the woodpile with the new shop vac). You talk to your sons on the phone for hours. You take calls from family and friends who reassure you. You pour more wine. You call up your healing gurus and make appointments...acupuncture, reiki, reflexology, energy healing, therapeutic massage, qi gong classes, meditation. You go for drives on old country roads that have no end. You wake up in the middle of the night and look out at the stars, knowing everything will be alright.

And so we wait.

Our Pilgrimage

Many of you have asked where the picture was taken at the head of this blog. It was taken a year ago at The End of the World, Finesterre, Spain. This was the end of the earth as the ancients knew it, a spit of land in Northern Spain reaching out into the Atlantic Ocean. This was the last day of our pilgrimage along El Camino de Santiago de Compostela (The Way of Saint James in a Field of Stars). The Camino follows the lay lines of the earth and is directly under the Milky Way so is assumed to have great power. Pilgrims have walked the path to Santiago since the Middle Ages, some to expiate a great crime with iron chains in penance but most for a miraculous cure. Even today, they come in droves with a cause, each working something out in their minds or bodies. Each hoping for redemption or reprieve. I also came with a cause. It was five months after I had been given the clear sign from my second bout of cancer and I needed to do something challenging and maybe find my own little miracle.

We set out in a group of seven, Don, Debbie, Kathy, Glenda, Nora, Julie and me. We were pilgrims on the road to glory, hiking across the Pyrenees through ancient chestnut and oak trees, through old half-deserted towns built entirely of stone, sleeping in monasteries and hostels, eating the meals of the peregrinos and meeting people from all parts of the world and from all walks of life. We had learned the James Taylor song, "Walk Down That Lonesome Road' and made more than one peregrino cry with our evening renditions. When we finally reached Santiago we had tears in our eyes because of the grandeur and the thoughts of all the pilgrims who had arrived here throughout the ages. From there we went to the end of the world.

On our last night together we gathered in one room to each reveal a revelation we had along the way. Three hours later we went to bed looking down on the lights of the town shining on the water and up at the stars of the Milky Way.

Tomorrow I make my pilgrimage to the hospital for my last session of chemo. My journey to this point was every bit as challenging and meaningful as The Camino. It's a little miracle in itself. She'Dae

Welcome!!

Welcome to our blog!! For those of you who were faithful followers of 'The Shiddy Times' newsletters, this is our attempt to update you a little more regularly on Shirley-Dale's progress, and to share some of the things we've learned or experienced along the way.

So, why change the name from the Shiddy Times you ask? Well first off, it's a blog and the name Shiddy Blog, well, that's just disgusting. Secondly, we are taking somewhat of a new approach to all of this cancer hullabaloo and are focusing more on the ways that we have been enriched by cancer rather than robbed. We have come to realize that despite all the chaos, we truly are lucky and that these times really aren't so 'shiddy' after all. It has been more of an adventure than anything else, as we make our way through the health care maze and search out every possible way to be happy in this moment. Slightly cheesy, I know, but after three cancer recurrences and four rounds of chemo, you tend to get a little sappy from time to time.She-dae and I will take turns writing, with thoughts, stories, recipes, pictures, information on health and healing, and who knows what else. It will be a surprise to all of us!

Now, for an update. Shirley-Dale is doing great and is almost finished another round of chemo!!  Just to recap, she was diagnosed in early December of last year with the same kind of cancer as before (Unknown primary source, small-cell neuroendocrine) which had recurred in her liver, her omentum (tissue layer covering the organs in the abdomen) and in her lower lymph nodes. After contacting an oncologist in Sweden who is the world expert for this kind of cancer, SD started on a new kind of chemo that was not being used yet in Canada . The chemo was working and only the tumours in the liver remained, however her white blood cell count was unable to rebuild in time to keep on the chemo schedule. So this past April, Mom and I  traveled to Sweden to visit the cancer centre there. Dr. Kjell Öberg and his staff were incredible, offering lots of options and above all else hope. Because she was unable to keep on the chemo that he had suggested due to her blood counts, Dr. Öberg recommended a procedure called liver embolization, in which you block off the blood supply to the tumours in the liver. Fortunately, SD was able to have Part 1 of this procedure done in Halifax in July and was scheduled to have the other half of her liver done in August. However, we noticed that she wasn't feeling that great and seemed to be feeling progressively worse as the summer days passed. After some hospital tests, the doctors confirmed that her cancer had started to grow again while her body was healing from the chemo. The tumours in her liver had grown and it had spread to her omentum, her lymph nodes in her abdomen and there were two small spots in her lungs. This time, she actually had symptoms and was in a lot of discomfort from the cancer. We had to act fast, so back into action-mode we snapped, convincing the oncologist that there was in fact something they could do to treat this, even to be brazen enough to tell him which chemo to prescribe. Thankfully he listened. We even managed to make him laugh out loud with our enthusiasm and confidence. As we were walking out of his office, Dr. Ghafoor shook Mom's hand, holding it for a moment, and thanked us for teaching him so much over the past three years about hope, perseverance, small-cell-neuroendocrine-cancer-of-unknown-primary-origin and about being proactive. Success.

So, She-dae has been trudging her way along through another round of chemo. The one she is on now is the same kind that they used the first time she was diagnosed, Cisplatin and Etoposide. The chemo is brutal, but she is handling it really well this time, and even managed to keep her blood counts high enough to get a full dose on schedule for the first four cycles. She just had her fifth cycle on October 6th, 7th, 8th (three days in a row), so she is starting to come around again. After her second cycle, the CT Scan showed that the chemo was working and the cancer was shrinking rapidly. To quote Dr. Swan, a family physician working in oncology,  "the CT scan results are just lovely!!".  We left the clinic with a skip in our step. SD said she felt like she had just written an exam and was now the prize pupil for getting the best mark. 

As always, thanks so much for all of your support. If you want to keep on top of the lastest She-dae news, bookmark this blog site or sign up to be a follower so you can be notified when there are new postings.

Much love,
Julie and She-Dae