tag:blogger.com,1999:blog-78977268621147465162024-03-05T03:15:33.537-08:00Breast cancer, eh?Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.comBlogger60125tag:blogger.com,1999:blog-7897726862114746516.post-79990768656693478782021-01-17T12:27:00.001-08:002021-01-17T12:27:45.982-08:00DEXAMETHASONE, CHICKEN WINGS, AND MORE<p>JANUARY 17, 2021</p><p>The pleasures of dexamethasone allow for pleasure of food as well as looking as though I am not looking gaunt. However they do not extend to being able to get out of bed because I've become quite dizzy on the dosage. Monday we will go down on dosage and hope to stay there.</p><p>I did get out on Thursday in a medivan with two great attendants and an extra one who was on training. This was to get over to Dr. Svorkdal's Pain Clinic for a pain pump fill. So I got to see the neighbourhood on a sunny day and on the way back they backed in so I could see my chickens and Andy brought up my favourite one, Zoe who is a True North Blue. Andy brought Thelma, my biggest Jubilee Orpington in last night to visit. Her combs and wattles are very red and I think that she will lay soon.</p><p>You may recall that my son Steven came from the Sunshine Coast north of Brisbane in Australia almost 2 weeks ago and has been allowed to visit masked outside my door on the deck with mask on. I too was supposed to wear a mask and finally on the lastly am complying. I think we all know I could be considered to be defiant/independent and now apologize in this case. I miss Heidi, Steven's wonderful partner so much but she is working full time on her online art and jewellry store that is all personally made. Were she to come now, she would have to quarantine two weeks here and two weeks when I'm going back so we shall see. My daughter-in-law Kara, wife of Andy and mother of Parker are now working and in school in Terrace. Should there be an opportunity for them to come on a break perhaps I will be overjoyed to see them.</p><p>There is no question that I feel some mental deterioration as is expected and I hope to be able to write this blog for a little bit longer. I think today's edition is enough for now. Love you all, Marian</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJU0fLL87d0tXKtpN6Xph7eVcNQ1alSRXM5qVtcSX8lt6KQVUbVvXYsD8c-My4GkbfGs1yGM89ev0SJ3uCj-4FvFHkd6MhTswUDUhFHFA-xVScejfZUE0Exeks_KWjhi3bBAlQfi1Co-Y/s2048/E52C883E-B64A-4B0E-A18A-1F48655A72D8.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJU0fLL87d0tXKtpN6Xph7eVcNQ1alSRXM5qVtcSX8lt6KQVUbVvXYsD8c-My4GkbfGs1yGM89ev0SJ3uCj-4FvFHkd6MhTswUDUhFHFA-xVScejfZUE0Exeks_KWjhi3bBAlQfi1Co-Y/s320/E52C883E-B64A-4B0E-A18A-1F48655A72D8.heic" /></a></div><br /><p><br /></p><p><br /></p><p><br /></p>Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com15tag:blogger.com,1999:blog-7897726862114746516.post-24952552113439649222021-01-10T16:59:00.000-08:002021-01-10T16:59:13.916-08:00DYING OF BREAST CANCER<p>Yes, I am dying of metastatic breast cancer. I was quite surprised myself when I found out, especially since a CT scan done November 27th showed no progressions. That same day I had my fourth and last session of BCCA Music and Art Therapy, and found it hard to complete. When one has MBC (metastatic breast cancer), often we blame ourselves for not having the energy to complete a project. On the 4th of December I spoke with my pain clinic BCCA doctor and still did not realize that things were going wrong. </p><p>Early in the morning on December 17th, I had an MRI. The next evening, we got results that showed leptomeningeal disease (cancer in the brain), which leads to a fast death. I had been suffering from a light headache and occasional nausea for a month but chalked that up to psychosomatic illness. I woke up on the 19th to nausea and vomiting and that continued daily. Thankfully I had started counselling before I found out. It has been the best thing I have done for myself in a long time, and for everyone else. </p><p>December 31st I went to the BC Cancer Agency to begin palliative radiation, and then was admitted to the oncology floor of the Jubilee Hospital in a special unit for palliative patients to complete the ten treatments of radiation. On January 8th, I came home to die. As I left, my radiation oncologist, a woman from Iran, said a few weeks to two months. I began to receive home support almost immediately and now receive it three times daily. </p><p>My whole family is here. Steven is here from Australia, in quarantine at a good friend's AirBnB. The head of the Island's palliative team has given exemption for Steven to visit on the deck outside with a mask on, and he will come to live with us in 8 days. Andy flew from Terrace on the same day, the 4th. And Mary has been with us for several weeks, taking on a lot of the care. </p><p>It was scary to hear the news at first and I became disoriented during the treatments and did not even know where I was during my time there. Thankfully I am better now at home though there is no question that my cognitive skills have deteriorated.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDnjRL_PZOdq2Abv4cmP1bSOhgGIGQgf8nsfXG4ePE6WJUJ-9GHxVvRv97dpkcxYQrmYBOthJgonNezQWYBHWXXBuzkZ5ybiaxYWETrKLFY_P-A2gF5jD8VDn0jcwXX5iSFawb2XsAoC4/s2048/DF5D291B-FB18-4C9F-AB72-40194AEEB428.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1539" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDnjRL_PZOdq2Abv4cmP1bSOhgGIGQgf8nsfXG4ePE6WJUJ-9GHxVvRv97dpkcxYQrmYBOthJgonNezQWYBHWXXBuzkZ5ybiaxYWETrKLFY_P-A2gF5jD8VDn0jcwXX5iSFawb2XsAoC4/s320/DF5D291B-FB18-4C9F-AB72-40194AEEB428.heic" /></a></div><div><br /></div><div><br /></div>I took this selfie of myself wearing new self tied scarf sent by my cancer buddy Elderberry Dec. .25<div><br /></div><div><br /><p><br /></p><p><br /></p></div>Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com29tag:blogger.com,1999:blog-7897726862114746516.post-4772800678628693032020-10-17T15:37:00.002-07:002020-10-17T15:37:52.474-07:00FALL PROGRESSIONS<p><span style="font-size: medium;">Summer has progressed into fall and with it some beautiful weather, even warm at times. Fall is my favourite season and this year is no different. Changeable weather on Southern Vancouver island has been spectacular. It also reminds me of the many times I have been in Nepal at this time of the year. I miss the mountains but have much to look back on, time spent with friends in more leisurely yet challenging ways. I often spent a few days trekking on my own in areas near Kathmandu before our groups would arrive from Canada, the US, New Zealand and the UK and even Hong Kong one year. Although I hiked with a porter and a guide I learned a lot about myself in those times alone. I took a break in 2012 and 2013 when breast cancer first appeared in my life. It did not stop me though and I was back leading two treks to Annapurna Base Camp in 2014. Although my trekking life came to a halt with metastatic breast cancer diagnosed soon after the second Lo Manthang (Mustang) trek in 2017, the learning has not ended.</span></p><p><span style="font-size: medium;">Today is Dick and my 37th wedding anniversary. I consider that another feat that has not always been easy, nor is it easy now facing the prospect of an earlier death for me than we expected. Anyone who suggests that all of us are going to die someday have not endured metastatic cancer. Covid has affected all of us and has certainly given not just us but the whole world pause to think about life in general. No longer can we nonchalantly go on in our lives when we really do not know what is coming. Whether we acknowledge it or not, indigenous, people of colour and black lives matter in a way that so many of us born to white supremacy have never faced before. We now have to choose to be racist or anti-racist. I watched the premier of our province have to backtrack following a debate this week when he said "I don't see colour." Let's hope that we can all learn more and in doing so show more compassion as we find ways to really break down barriers.</span></p><p><span style="font-size: medium;">My last blog post spoke about metastatic progression and endurance. Yesterday I read the list of treatments another woman with MBC wrote about~~ surgeries, chemotherapy, radiation, physiotherapy, lymphedema therapy and more since 2012, It sounded a lot like my list and clearly so many of us endure countless treatments and the appointments that we must attend. For me, I have also had three hospice stays and one hospitalization in the past couple of years. Back in the"good old days" of breast cancer~~pre MBC, i did have long periods of freedom from the medical system but these past few years there are constant reminders especially with the sometimes almost unbearable neuropathic pain. </span></p><p><span style="font-size: medium;">When I took that break from chemotherapy but pain continued I had months to think about mortality. I had gone through the MAID application process but quite clearly I was not ready to die, nor am I now. Quitting chemotherapy for 9 months created some space for me but it turned out to be unrealistic once the CT scan and August PET/CT scans showed progressions that were incompatible with my "no more chemo." One tumour is in the chest wall but so close to the surface that it could soon break through. Others could be precursors to lung cancer and one on my iliac crest may or may not be bone involvement but both lung and bone are usual breast cancer metastases. For the last two weeks my voice has been hoarse. I was not sure who to approach but decided to bring it up at chemotherapy on Wednesday. I now have an ultrasound booked for next Friday. I reread my PET/CT results and there was a comment about the isotope uptake for my thyroid. It was high enough to warrant a recommendation for ultrasound and biopsy if "clinically appropriate." There will be a biopsy I was told if the radiologist recommends it following the biopsy. </span></p><p><span style="font-size: medium;">Strangely my pain has decreased in my arm though not my hand or scapular and shoulder areas. But the change has allowed me to be upright without staggering pain within minutes. I can go for walks again albeit short ones given the weakness that has ensued over the months of sedentary activity. We are all surprised and tentative but I am trying to take it a day at a time. The roller coaster ride of life can change on a dime and the Covid I mentioned above restricts independence that I have found such a burden.</span></p><p><span style="font-size: medium;">There are many things I am grateful for and know that not all us are so lucky. My oncologist has never given up on me something that others do not always feel. Covid-19 has meant many important programs stopped abruptly. We need to advocate for ourselves and search out alternatives. BCCA province wide has created Zoom groups for meditation and music therapy, metastatic support and others. I listened to a webinar from NS and am signed up for a music/art therapy 4 week course. Phone conversations and messaging sustain me while we wait to see how Covid goes. I have always been a planner and a dreamer and at times those things can bring me to tears whereas at other times they make me aware that life goes on and the birds and flowers and ocean within view can keep me from despair.</span></p><p><span style="font-size: medium;">Please note that you can choose to "FOLLOW" me. That choice is on the right side of the screen. I also posted a few recent fall BC photos.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYtJuMWR08JFh5eqEMSpzVtEdYn6ILbfnyr_yzhVF8VyyfOTGztLyi70JnMZKOPvwdy1pXzbsJb1087RB2S1Vyau9rBEkAvRW25I5pd1-yvoPaT9Km85zfkFbwMC76NZxM4s-v_i7xGdw/s2048/8682D0D5-61AA-452E-ACEF-7D8E38A2E687.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1539" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYtJuMWR08JFh5eqEMSpzVtEdYn6ILbfnyr_yzhVF8VyyfOTGztLyi70JnMZKOPvwdy1pXzbsJb1087RB2S1Vyau9rBEkAvRW25I5pd1-yvoPaT9Km85zfkFbwMC76NZxM4s-v_i7xGdw/s320/8682D0D5-61AA-452E-ACEF-7D8E38A2E687.heic" width="320" /></a></div><p style="text-align: center;">Many surfers plus me, Dick, David and Mary Sombrio Beach on our Pacific Coast recently.</p><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9CCp8nssdCV3sSX1DEBN8DPeAm5QtrQ9BcE9CziEuH1UyckX2GdhRScPIKBuMAB0Pk_5w0QGSEgMS59CXZl8Dz_drBFIG5VHYvAres0LctVuNL6h7Iy0zmtr3eIkmbXiLrw7Q45l8n5U/s2048/A2C00D3E-C65A-4B1C-B35D-6ED374C67291.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9CCp8nssdCV3sSX1DEBN8DPeAm5QtrQ9BcE9CziEuH1UyckX2GdhRScPIKBuMAB0Pk_5w0QGSEgMS59CXZl8Dz_drBFIG5VHYvAres0LctVuNL6h7Iy0zmtr3eIkmbXiLrw7Q45l8n5U/s320/A2C00D3E-C65A-4B1C-B35D-6ED374C67291.heic" /></a></div><p style="text-align: center;">A gnarly tree in the Avatar Grove on the unseeded territory of the Pacheedaht First Nation where we hiked in September. It was slow and with much assistance. So beautiful.</p><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhix8lY-dja8oydQeAArsUcL2PetpKMUBp3Lokq8QPUfYHwJsN2WHe3EqzNz4aErD6mnBIYGtDIsQDyCTOEaqSrRwaunLAsADK809vXwy0G7L-QQf_ERlZyCL2NGKloqJRHVOyKXub1z58/s2048/C1E4C123-89CC-46C0-BF3D-37EC53A3698C.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhix8lY-dja8oydQeAArsUcL2PetpKMUBp3Lokq8QPUfYHwJsN2WHe3EqzNz4aErD6mnBIYGtDIsQDyCTOEaqSrRwaunLAsADK809vXwy0G7L-QQf_ERlZyCL2NGKloqJRHVOyKXub1z58/s320/C1E4C123-89CC-46C0-BF3D-37EC53A3698C.heic" /></a></div><p style="text-align: center;">Deer grazing across the street from us.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtxWC9hXkSEeR0fFlRGLP91ZtCTxhXGgrkfUc7-exB81cK8I5qd3u9rmDXblYDdaeg2iSXXupxfce-xox7S4cY0Uc3p8aq-RpXDWcm8omD67cDmnThVY-34wQ3E8A662pwkb1V_7c7v1I/s2048/ACF92A1F-8A3F-4D00-80FD-E545A9FE4B11.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtxWC9hXkSEeR0fFlRGLP91ZtCTxhXGgrkfUc7-exB81cK8I5qd3u9rmDXblYDdaeg2iSXXupxfce-xox7S4cY0Uc3p8aq-RpXDWcm8omD67cDmnThVY-34wQ3E8A662pwkb1V_7c7v1I/s320/ACF92A1F-8A3F-4D00-80FD-E545A9FE4B11.heic" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div style="text-align: center;">Sunset from our house last night.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p>Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com11tag:blogger.com,1999:blog-7897726862114746516.post-91090836927202514112020-08-23T18:16:00.004-07:002020-08-23T18:16:41.483-07:00SUMMER PROGRESSIONS<p>Yes I have another summer progression and I did not expect it. My neuropathic pain has been the focus over the last year. In fact, there had been no progression that we had noticed for close to two years. I had a PET/CT in November, a CT in February and an MRI in March and no cancer was seen. So I had a routine CT August 6 and got my results last Tuesday. I met my oncologist at my first face-to-face appointment since Covid started and appreciated it as phone calls are fine for day to day health issues but not for tough news like this. We went through the report and my doctor and I agreed that it was poorly written despite the fact that there are new metastatic masses, nodules and nodes in the chest and chest wall. </p><p>She has asked for a new report and a PET/CT has been ordered to be done in the next couple of weeks. The situation is different than it was last November when I was at my lowest after two spinal surgeries, a cerebral spinal leak and continuous chemo. We all know that situations change especially evident as we all face Covid in different ways. Thus I will start chemotherapy on Wednesday. The drug is called Eribulin and is usually given to those who have had at least three or four different types of chemotherapy which I qualify for.</p><p>If these tumours shrink there is a possibility that my pain may decrease. Given the timeline between CT scans I think that the pain that started to increase in March may well have been caused by the cancerous growth. This is only a supposition that I have come up with but I think it has merit. Despite the pain that has made me sad, angry, depressed and has taken away much of my physical activity I feel that I am healthy enough to endure what I have to, as I begin this next adventure. It has nothing to do with strength, bravery, or fighting a battle. It is all about enduring what is needed to carry on.</p><p>There are lots of good things going on around me. We have had some good weather towards the end of summer and I have always loved fall. As all of us do, I hope that Covid will slow and that I will be able to see more people as time goes on. I so much miss seeing friends though we were lucky to have Andy and his fiancee Kara and her son Parker visit us recently. Mary and David continue to be part of our bubble and spend time here every week with us. Steven and Heidi call often from Australia as they weighed out Covid in hopes of finding jobs and a place to live on their own. Luckily they have Heidi's family there. Twice I have had a close friend stay with me and Dick has been able to get out on VK.</p><p> I wanted to update everyone who follows my cancer journey and trust me, you will see more.</p>Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com1tag:blogger.com,1999:blog-7897726862114746516.post-35184234584142872182020-06-10T18:00:00.001-07:002020-06-10T18:57:01.389-07:00NEW EXPECTATIONS<span style="font-size: large;">There was to have been a Part II of the last post. However that was then, this is now and every day is a new day. Back a month ago when I left hospice I had been encouraged to live with new expectations. <span style="font-family: "arial" , "helvetica" , sans-serif;">When</span> I was diagnosed with breast cancer almost eight years ago it never occurred to me that I would have to change my expectations many times. Most of us who have been diagnosed with breast cancer do not expect to progress to metastatic or advanced breast cancer though I believe that the possibility never really disappears. So I was not totally unprepared with my second breast cancer diagnosis. What did surprise me though, was the rapid loss of the use of my right hand along with continuous and ever-increasing pain eased only by narcotics, opioids, and anaesthetics. Nerve blocks worked briefly but never fully ended the pain. I have heard neuropathic pain called "the beast" more than once. However at each juncture I picked up and carried on. I am not saying that was easy for me for or my family and friends but it was how I had managed since the first diagnosis. </span><br />
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<span style="font-size: large;">Just for fun:<a href="https://www.iwpharmacy.com/blog/opiate-opioid-narcotic-whats-the-difference">https://www.iwpharmacy.com/blog/opiate-opioid-narcotic-whats-the-difference</a></span><br />
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<span style="font-size: large;">Now that we know the difference between opiates, opioids and narcotics I can say that I have probably used most opiates, opioids and narcotics including marijuana but not heroin. I recall drinking tea made from opium poppies grown on the Saanich peninsula but do not remember any real effect. The above post does make me wonder whether smoking opium would help with my pain but it does seem unlikely that any opium dens remain here.</span><br />
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<span style="font-size: large;">Back to reality, this latest "pain event" has changed the way I view life and death, at least for now. I came home saying that yes, I did want to live but I wavered between denial, anger, sadness and more with way too much thinking time. The new expectations revolve around a real lack of mobility, whether from the pain, the drugs or more likely, a combination of both. The pain could be nearly eliminated by more drugs but the cost of that would be a deterioration of balance and motor skills and possibly cognitive skills. Much of my time thus, is spent reclining~~ more pleasant a word than lying down. Just so you know, my pain pump now has a continuous flow of sufentanil~~pretty much the strongest opiate around and bupivicaine, an anesthetic used for epidurals. I am completely dependent on the flow and in addition I take methadone and oral ketamine. I use a ketamine nasal spray or pump boluses for breakthrough pain. Overall this is one huge whack of narcotics.</span><br />
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<span style="font-size: large;">A good friend has often called me the energizer bunny and I told him today that this is no longer the case. It is true that I have always liked to be active but this has been taken from me and I have to get used to being sedentary. That word has a negative connotation so let us say physically inactive. At first I felt this to be the worst loss ever, thus the sadness et cetera. Only recently with the necessity of a counsellor's help, have I realized that it really "is what it is" and that I can work with that. Andy encourages me to be positive and I first I took that to mean maybe I could regain my mobility. Now I am thinking that maybe being positive can be living with a big disability but still in a meaningful way. I do not know how that will look but I do know that I am a little better.</span><br />
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<span style="font-size: large;">Over the past weeks I stopped wanting to talk to anyone in part because I did not feel there was anything good to say. A friend sent an email asking me about one good thing from my day. It took me awhile to think of anything good but that email did force me to recognize the beauty that surrounds me and how much friends and family do care. I am now reaching out to ask for help, something that has been very difficult for me over my lifetime.</span><br />
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<span style="font-size: large;">I want to close with the wish that we spend time learning and recognizing more about the hundreds of years of suffering black people have faced while the majority of we white people have not lifted a finger. Yes we may say that we have cared but just what have you and I done to change the situation? What it will be, I have no idea but I must find a small way to join in the movement of real and lasting change. May we all do the same. If I were American I would most certainly be voting and campaigning to remove Trump whose cruelty shows absolutely no sign of abating. He has zero empathy or care for anyone but himself. While so many us cringe at his daily pronouncements, it is also time to stand up to the bully and his gang who affect not only Americans but the world.</span><br />
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com0tag:blogger.com,1999:blog-7897726862114746516.post-79191645331037794502020-05-19T09:59:00.001-07:002020-05-24T13:22:57.039-07:00ANOTHER HOSPICE STAY DURING COVID-19<span style="font-size: large;">Saturday May 9th, 2020</span><br />
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<span style="font-size: large;">Tomorrow will be Mother's Day in Canada and despite it being a Hallmark holiday it does allow me to think about all the years I've been a mother and how much I have loved being a mother. I think about my three kids so often and right now it is bringing tears to my eyes not only because of how much I care about them but also how much I want to see them continue to grow.</span><br />
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<span style="font-size: large;">This is not how I meant to start this blog post but it just flowed. David who is Mary's partner got us started watching the home videos that Scud Green, an Aramco brat put on DVDs for us several years ago. We had never watched them since we got them and I'm so glad that they came out. It brings all those memories back and even makes me feel that I was a pretty decent mom and know I still am.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">As for me, for several months after the fall surgeries and illness that they caused, and for several months post chemo I felt better and better. My hair started growing back in, I gained back the weight I had lost and we even went on a winter holiday to Roatan so that I could be warm and snorkel on the second largest barrier reef in the world. That was in February and we arrived back in early March to COVID-19. Even so I came back happy, appreciating everything around me. With our early spring in Victoria, cherry trees were already blossoming and camellias, azaleas and rhododendrons were getting started. Flobi and Jake our decade old cats were so happy to see us especially Flobi who loves to sleep with and even on me. </span><br />
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<span style="font-size: large;">Around the middle of March I started to feel the old stirrings of pain from my right scapula radiating to my shoulder and down my arm into my hand. Because my pain pump had worked so well for almost six months I chalked it up to COVID stress.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">On March 31 I ventured out of self isolation (being an honest vulnerable senior whose family says no going out other than to the garden and for walks) to have an MRI that had taken three months to organize. The hospital system could not understand how I could not just turn off my embedded pain pump for the duration of the MRI. Somewhere during the wait I heard that my SynchroMed II would turn off as the MRI got going. For anyone who has not had an MRI, lying perfectly still for an hour or more is hard enough so I had taken Ativan prior to the scan. The pump did turn off but what I had not anticipated was pain ramping up in just an hour. It should have dawned on me then that I was seriously dependent on the pump. I had to go straight to the pain clinic anyway to make sure that the pump had come back on which indeed it did and also to help my pump filled. I asked to have the dosage increased, still thinking that perhaps the decrease awhile back was a mistake.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">By this time I had been able to go nearly 4 weeks without a fill but two weeks later I dropped into the clinic saying that my pain had increased further. It was decided that I should have another increase right then and there. I also had the feeling I was not using my PTM (Personal Therapy Manager for breakthrough boluses) correctly. I had never needed it up to this point and it was indeed defective and I had a new one sent express within two days, along with another dose and concentration increase.</span><br />
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Second from right is my PTM. These are the gadgets that I have close by when I am spending a lot of time in bed.</div>
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<span style="font-size: large;">On April 28 despite the boluses that morning I could not control the pain and it really scared me. Once I got the pain under control just enough to make a phone call I called the hospice* to see if they could help me. With a brief explanation the nurse pulled my file and said she would call me back. Because they were able to pull my file and talk to a doctor and nurses there, they told me they would look into it and call me back. Within 10 minutes she called and told me they had an acute care bed available and it was felt by the staff there, that for my own safety I should come in. I needed to be there ASAP. Car vibrations have always increased the pain when it is exacerbated and I did suggest that Dick should try to hit every bump. Yes, sarcasm and luckily the hospital where my hospice is located is only a few minutes away from home.</span><br />
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<span style="font-size: large;">Monday, May 11th. </span><br />
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<span style="font-size: large;">Soon it will be two weeks of investigation including a CT scan and another MRI to make sure that the tip of the catheter that goes up my spine was in place and had not been occluded. With no other real alternatives I was switched on Thursday to the most potent opiate in the world, Sufentanil.* Its big claim to fame is that it is 1000 times more potent than morphine. This hospice is amazing and my team is unbelievably knowledgeable. Everyone is fully aware of what I'm going through and in a way that is a good thing that I had the weekend so we could see how I did on the new drug. </span><br />
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<span style="font-size: large;">My doctor who is head of the hospice likened my situation to someone on dialysis. Without dialysis life would not go on. For me without my pain pump I too would not be able to go on. This analogy is real as I am now grappling with it. There is no question that for now I want to live despite the fact I may never be active again. That s a hard pill to swallow but for now I definitely want to live.</span><br />
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Outside my hospice window there was a large and very old Garry Oak tree. It was lit each night and before dawn.</div>
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Tuesday May 19, 2020. If there is any confusion because you saw this earlier and it has changed a bit, I went to write a Part II to this post and noticed that parts were missing. I think that I went back to edit something and forgot to publish again after I had saved the changes. Being on drugs probably does not help!</div>
Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com4tag:blogger.com,1999:blog-7897726862114746516.post-42647444617907700572019-11-29T19:32:00.002-08:002019-11-29T19:32:57.977-08:00A LONG POST<span style="font-size: large;">This is indeed a long post so feel free to skim or just know that I am OK or read it all.</span><br />
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<span style="font-size: large;">Over the past two months I have written this post many times on the computer and in my head mostly but worried that I would be guilty of whining now that the pain is managed. I wrote a lot about a horrible ER hospitalization that is over but remains in my memory still with intensity. Again my guilty fear of whining has got in the way. So I wrote in my journal while mulling everything over. and not sending. Now I recognize that my slow recovery while back on chemotherapy has taken such a toll that mentally my recovery is perhaps even worse. Over a month ago while two of my oldest and best friends were visiting I fell apart saying I was done and felt I could not do this anymore. I also texted two other close friends basically saying the thing. I wanted to just give up. But I guess I was in such bad shape that I made decisions that were crazy. That piled on more shame and guilt. What the fuck. This is year 8 of cancer and I have endured much but I have never felt that low physically, mentally and emotionally. </span><br />
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<span style="font-size: large;">A couple of weeks have now gone by and maybe tonight is the time for posting. It is November 29 and I went to 3 appointments this afternoon. The first was to have my port de-accessed. I have it accessed for bloodwork the day before chemotherapy and it is left accessed for chemo. My bloodwork has been tanking for weeks and this week it was worse. Hemoglobin below 80 means transfusion time and mine has been going down steadily, this time 79. So when I saw that yesterday I was surprised chemo would go ahead. I asked for a doctor's opinion and a GP showed up explaining that the protocol for Gemcitabine allows for low blood counts. When she did agree that I would likely need a transfusion next week that was it for me. No more chemo and especially because this was the last one for now anyway. I came home but we forgot about de-accessing my port thus the first appointment today. After that I walked to another building and had my embedded pain pump filled. The last event of the day was an annual eye exam. Good news there~~not much change after 3 years of big changes, probably due to treatment.</span><br />
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<span style="font-size: large;">Ending chemotherapy should be celebratory news but I am so exhausted that I am not there yet. With my pain pump working and the end of chemo I do look forward to a slow recovery physically with hopes also that my glass half full attitude will return. For now, I admit that I am thankful that my cancer appears to be stable. Please know that I am not fighting breast cancer, nor should you see me as inspirational~~most us are simply enduring what we have to, until we cannot. The words of battling or fighting cancer are nonsense. What happens when we die? Were we failures because we dis not fight hard enough, try hard enough? I also dislike the word survivor. Those of us with breast cancer whether Stage 1, 2, 3 or 4 are not survivors. There is no cure for breast cancer. There is hope. Hope that some day the research will find out how breast cancer starts and evolves. Hope that we can get the most out of what life we have left. Hope for no pain and for many other things. Once I recover from the toll the past several months have had on me, maybe I will be able to get involved in the need for more funds for research and more care for those in need, rather than cuts all across Canada. </span><br />
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<span style="font-size: large;">The following was written awhile ago.</span><br />
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<span style="font-size: large;">When I was discharged from Hospice about 10 days after the final surgery I felt there was something not quite right about it. But the doctor and staff felt that I was ready so I agreed and walked over to the pain clinic to have my pain pump checked and later that afternoon I returned for chemo. Wrong decision. I felt really sick. I realized then that I should have stayed at least another night in hospice. The next morning I returned to the pain clinic to have the remaining staples removed from my surgical sites. My doctor walked in just as the staples came out but also just in time to hand me a garbage bin for my projectile vomiting. No one seemed to be concerned and chemo was blamed. I vomited all the way home and my biggest sadness then was that no matter how hard I tried, I could not get out of bed to go to my monthly support at the cancer agency. I went the next week to my usual appointments and had chemo #2 on the Thursday. Again, I felt nauseated and the next day the vague headache I had had since even hospice got really bad and unless I lay down without turning my head it was from my point of view, really scary. I missed another important event, a major worldwide climate strike as there was zero chance of attending. I did call the pain clinic and the cancer agency, knowing the weekend was upon us. Everyone said to go to ER if I felt worse.</span><br />
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<span style="font-size: large;">By Saturday my headache was worse and nausea and non stop vomiting started. I could hardly bear the idea of moving from bed into the car and it took Dick a long time to convince me. In my nightgown and slippers we made it to ER where I lay on hard chairs except for the brief procedural steps. I was admitted eventually and I felt like I was in a nightmare. Bright lights, so much noise and I was still vomiting. A few hours later I had a brain CT which seemed to the doctors to be a major subdural hematoma. Back to CT for a spinal CT and it turned out instead to be a major cerebrospinal leak or leaks. It was not until Monday that my doctor appeared to tell me the treatment. A blood patch which entailed drawing about 10cc of my own blood and injecting it into my spine was the answer. The next issue was that I needed to wait until Wednesday for the cryoscopic x-ray machine to be available along with the doctor who could free up 15 minutes of his assigned time that morning.</span><br />
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<span style="font-size: large;">The nightmare continued as I was still in ER, granted that by then I was in a quieter area. I was delirious at times and needed a blood transfusion. Late Tuesday I got a bed and felt as though I had been moved to a 5-star hotel. Wednesday the blood patch was done in a sterile mini OR and within 10 minutes the injected blood into my spine found the leak and sealed it~~voila, the headache was gone along with the nausea. So, another hospital story~~many thousands of dollars spent keeping me in ER 3 nights and then another 2 nights in a private room for a 15 minute procedure. I have been hospitalized many times over the years but never felt so hopeless and ill. </span><br />
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Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com2tag:blogger.com,1999:blog-7897726862114746516.post-91787765703835344302019-09-16T15:48:00.000-07:002019-09-16T15:48:33.850-07:00SUMMER TO FALLAugust 12th was when I was admitted to hospice and it is now September 16th. I missed half of summer and probably the best part of it. However, there is no going back and I am so happy to have this amazing chance to get back to a more normal life, strange as it is to have a foreign device embedded in my abdomen.<br />
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The plan this week is to get me home. The representative from Medtronic who makes these pumps is coming over from Vancouver and I will learn how to operate the remote control device which is connected wirelessly to an iPad for dosage directions and more. My only involvement will be to learn how to add boluses (breakthroughs for more painful episodes) which will be predetermined along with the daily dosage by the doctor and nurses at the pain clinic. The system is set up so that I cannot “hack” into the pump for unlimited boluses.<br />
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Now that pain and the delivery system to reduce it has been “installed,” we are back to considering how to best deal with the cancer that is causing the pain. My oncologist was in to visit last week and the plan is to restart chemotherapy on Thursday which is also the probable day I will go home. I will continue with IV Gemcitabine weekly for 3 weeks with a week off and so long as tolerable this cycle will be repeated. A PET scan has been ordered as we still want to try to find out if possible, what happened to cause the major pain flare-up. Since the most recent CT scan and MRI did not appear to show any progression I hope that the PET scan either aligns with the other tests or does give us some indication of what is going on.<br />
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Meanwhile I look forward to getting back to a life with less pain with a goal of forgetting it exists for a few minutes then half an hour and so on. My daughter made a comment this weekend inferring that it would be good if I could get to the point where pain did not interrupt activities including social interaction. That may not have been exactly what she said or meant but I took it mean that I could go back to being a “normal” person rather than being consumed by pain. What a great concept! With the federal election around the corner, one of the first normal (for me) things I can do is volunteer for either one of the Victoria candidates or Dogwood. All I have to do is get home and decide what I can manage with my somewhat weakened body along with a mind that is being weaned off systemic narcotics. 😊<br />
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I may have mentioned earlier that Suzanne gave me a Kobo just as I was being admitted 5 weeks ago. From reading one book every few months, I have read half a dozen or more and managed to withdraw three more books from the Vancouver Public Library last night. The reason I almost stopped reading was because I had to put my book down every time I needed to turn the page and that became way too tiring. Much as I love real books, being able to hold the Kobo and turn pages with the same hand has been a wonderful gift. Mary encouraged me with her help to try quilting again. We actually started the process but it was at the time that pain was ramping up and it was impossible. Maybe now though I can try again. I doubt I could walk more than a block now but starting from that point will be yet another challenge. Dick will walk with me, Mary will take time to work with me to get back to the baby quilt we started and maybe I will get a few voters out to the polls October 21st.<br />
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I will be home when I write the next post.Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com0tag:blogger.com,1999:blog-7897726862114746516.post-40143063940773604882019-09-06T20:37:00.002-07:002019-09-06T20:37:30.227-07:00POST OP FUNI have been in the Victoria hospice nearly three weeks now. While laying around in a $10,000 exceptionally comfortable air bed with nary a chore to do may sound good, I am finding it a tad boring. While lying in said bed, in the last post I explained the first week was for new narcotics and old to come and go or increase or decrease all the while nurses and doctors carefully watching for any changes, given the very high doses of narcotics I had been on. Much has happened since then.<br />
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<span style="color: #222222; font-family: "arial" , sans-serif;">One week after admission I had my first surgery. Done under a spinal anesthetic, a catheter was inserted into the intrathecal space surrounding the spine. The worst part for me was getting comfortable on my stomach given all pain I had, not to mention the bony parts from my original mastectomy and subsequent breast surgeries. Some twilight sedation fixed that and an hour and a half later I was shifted from the OR table while being told to cough and breathe deeply as my blood pressure was 62/26. Any movement caused serious pain but surgical pain goes away, quite different than the other neuropathic pain. In any case, within a few days I was up and about other than the alarm of a leak which turned out to be mechanical rather than cerebrospinal fluid. It was easily fixed though it did delay my activity level which most of you know, is very hard for me~~I like to be active!l</span><br />
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<span style="color: #222222; font-family: "arial" , sans-serif;">September 3, 2019~~less than a week until the Stage II surgery. There has been progress for sure and my doctor continues to fiddle around with my meds in hopes to get it right. I have been home several times on passes for a few hours at a time. No overnight passes with an external intrathecal pump and to be honest I feel well taken care of here. The burning and throbbing in my hand continues when I am up due to circulation but it is so much better. All I can think of is that my hand is the farthest for the medication to reach. </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirhrw5scHeoNghX2Y2f6q9FwbCQwc4jLfBFJMwoh0T4gDMP2C0FweTfr4AoAFyw2Yz7iCjjkf5YCVC96a_BQqEKB6KYZ_EeZhRf0xgTOHH8CagPoJI1Z8a51eC2jRdsCqGFpCK0mIELIU/s1600/IMG_7894.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a><span style="color: #222222; font-family: "arial" , sans-serif;"><br /></span><span style="color: #222222; font-family: "arial" , sans-serif;">I do feel honoured to be here in the Victoria Hospice. I know most hospices do not have acute beds for pain management so that is one big thank you. I was so lucky when I was here just over a year ago for pain management but also to have met a doctor who had taken an interest in my case. He is an anesthetist first but also runs the Royal Jubilee Pain Clinic where he does several kinds of pain interventions. He did the stellate ganglion nerve blocks I had over several months but at best they are not long lasting. Frequently he and his team do simple epidurals and temporary intrathecal blocks to relieve pain for those in end of life situations. They have not done a permanent intrathecal insertion with an embedded pump for nearly three years. Apparently it is costly and when my doctor first discussed the option, he said approval was needed~~not sure how high up, but it was approved so once I was admitted this time, he got the ball rolling and here I am. It was also explained by the doctor in charge of hospice, that I am simply a good candidate. I have chronic excruciating pain caused by a cancerous tumour but also have the expectation of "long" life expectancy given the slow growing cancer. He actually wrote something similar in his notes from last year. I try not to get my expectations too high but know that I am lucky already and to have a decent chance of pain relief if this works, is significant. There are certainly possible side effects, even so far as paralysis but we agreed that living with constant immobilizing pain is not an option. </span><br />
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<span style="color: #222222; font-family: "arial" , sans-serif;">September 5th~~Wow, super annoying as yesterday I updated this post with photos but was interrupted and unfortunately lost it all because I guess I forgot to save. F**K! </span><br />
<span style="color: #222222; font-family: "arial" , sans-serif;"><br /></span><span style="color: #222222; font-family: "arial" , sans-serif;">I do want to describe what happened on my first pass shortly after that first surgery. I had wanted to go home for a pizza party with the family as all the kids were home. Andy had flown in from the north for a few days, Steven and Heidi were back home from Steven's year at the U of Nanaimo and Mary and her partner David were also around though it was their last night before heading east for a holiday.</span><br />
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<span style="color: #222222; font-family: "arial" , sans-serif;">Anyway I got my pass literally hours before this little pizza dinner and arrived home with my intrathecal IV via the external pump, a central port line and a couple of subcutaneous lines. I was dressed in hospital clothes not knowing what was coming. I noticed a couple we know on the deck as I came through the garage on to the deck but thought they had come for a drink. However as I walked into the kitchen I was so surprised to find a house full of friends and family there. It was my first ever surprise party and Dick did an amazing job considering that he had organized it long before I was in hospice. Every time I turned around I saw someone else. Friends from Victoria old and new, good friends from Vancouver who made the trip by ferry, Patti and Lyle by seaplane, Chris Worsley from Seattle and more. Mary's best friend Kath was there with 3 week old baby George and her husband Alan. Chris came on my 2014 Annapurna Base Camp trek along with his two sons Alan and Andrew. Kath was also there but did know the Worsleys. I love it that 5 years later Kath and Alan who met on the trek are now married and have a baby, making 3 generations there at the party. </span><br />
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<span style="color: #222222; font-family: "arial" , sans-serif;">I almost forgot to mention the two orcas Lyle spotted in the bay. They breached and ate for as long as we watched them. What an addition to an already special night though we could not get a photo.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Elaine making sushi as always</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinVUIArLI0ZmMLLOkYshj3XFkvW_9TZlaMqHQ-oX4qYTX-SpL07dlZ7UPUI-Amtn1j73IkDrKAqeqT9bsQD0g7Swyq-8Uxc8haW6B2wJXhvDzYCeuW_XWHhHILkA7TRoCChcDZNaQN83Q/s1600/IMG_7858.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinVUIArLI0ZmMLLOkYshj3XFkvW_9TZlaMqHQ-oX4qYTX-SpL07dlZ7UPUI-Amtn1j73IkDrKAqeqT9bsQD0g7Swyq-8Uxc8haW6B2wJXhvDzYCeuW_XWHhHILkA7TRoCChcDZNaQN83Q/s320/IMG_7858.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Patti, Joanne and Bev<br /><br /><br /><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">View of Gonzales Bay that evening</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mary, David, Kath with sleepy George and Alan<br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Chris, me and Suzanne<br /><br /><br /><br /><br /><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Baby George<br /><br /><br /><br /></td></tr>
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Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com0tag:blogger.com,1999:blog-7897726862114746516.post-26116710310438976562019-08-17T20:22:00.001-07:002019-08-17T20:27:29.320-07:00PAIN<br />
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<span style="font-kerning: none;">My last post was mainly about my uncontrolled neuropathic pain and where it had got me. It got me into hospice to start with. However I am not sure that I really emphasized how bad the pain was to get to that point. It had steadily been increasing for weeks but the last week was especially bad. By the end I would wake in what I call the dark and scary hours and kind of murmur to myself about giving up and going to ER. It is hard to mobilize when in pain so I just took my Hydromorphone every hour~~the 2-3 tablets prescribed and wait in hopes the throbbing, burning pain would stop. Usually 3 or 4 hours later I would fall asleep for a few hours only to wake up wondering if it would hurt if I got up. Yes would be the answer and just using the bathroom and brushing my teeth would start the whole cycle off again and back to bed I would go. I did manage to stay up long enough each day by late afternoon to play "Ticket to Ride" with Wayne, Anne and Dick, though few times I would have to lie on the couch for a few minutes to push the pain back. Every once in awhile I would actually feel quite normal and then would think that I had been imagining all the hours of lying down, taking my meds and hoping for relief. One highlight was managing to stay up long enough to teach Dick how to make Elaine's grandmother's biscuits. </span></div>
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<span style="font-kerning: none;">But Monday morning when the phone call from hospice came, so did relief come with it. </span>The end game for admission this time was to get me a bed so that I could be guaranteed surgery as soon as possible. However the immediate goal on admission was pain management. I had this neat little yellow contraption embedded in my upper arm that subcutaneously allows narcotics to be pumped in all by myself~~well there is an hourly limit! The Hydromorphone was infused through the pump into my arm via the little yellow butterfly thing. Methadone in a higher dosage was given orally as normal plus a new one was added~~Ketamine. Ketamine I was told by doctor, was at one time a battleground drug, because it is easily given as an oral liquid that works quickly. I have also learned that it has been used as a veterinary tranquilizer, an anesthetic and also as a recreational drug. For me, this addition to my arsenal seemed to make all the difference and by Thursday things had really turned around. I could actually get up and do simple things like brush my teeth, wash my face and even walk to the end of the hall without that burning, shooting, electric pain that brought me here.</div>
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<span style="font-kerning: none;">Back to the aforementioned surgery~~ it is scheduled for 0800 Monday morning. The procedure is the temporary insertion of an intrathecal catheter with an external pump. The catheter will be threaded up the spine to the axillary area where medications will be infused from the eternal pump. Following surgery I will be monitored for a few days to ensure that the system works. </span></div>
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<span style="font-kerning: none;">Apparently this is Stage I. The next step if all goes well, will be back to the OR for the insertion of a catheter but with an implantable pump. Sounds like fun don’t you think? It will be done with a spinal anesthetic so I can let them know if there is unexpected pain as the catheter is placed. </span></div>
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<span style="font-kerning: none;">For now, I am laying around napping, doing the odd Sudoko, and reading books on the brand new Kobo Suzanne got me. She also added several books and got it linked with the library. Mary picked it up from her in Vancouver and I got it Sunday night~~perfect timing for my admission the next day. She knew I would love it as holding books had become so difficult I had virtually given up reading. After each page I had to put the book down to turn the the page, not to mention how hard it was just to hold the book in one hand. I read a whole book on my Kobo in the first 3 days here.</span></div>
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<span style="font-kerning: none;">Dick has gone off today with Mary and David for on an overnighter on VK. I was supposed to with them but it is clear why I am not. I am just happy that they have this opportunity now.</span><br />
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Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com3tag:blogger.com,1999:blog-7897726862114746516.post-54058789332886562422019-08-12T15:42:00.000-07:002019-08-12T22:24:47.057-07:00SUMMER UPDATE 2019 <div style="font-family: "helvetica neue"; font-stretch: normal; line-height: normal; text-align: center;">
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<span style="font-family: "helvetica";">It has been my intention to post here for a couple of weeks~~in fact since the anniversary of my first diagnosis July 27th. The metastatic cancer anniversary is coming up later this month.</span></div>
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<span style="font-kerning: none;">But things have changed so fast that every time I have started, either I have been in too much pain or I have not had the energy. July 19th (Dick’s birthday) we went sailing with Elaine and Suzanne and I am so thankful we did because I have not been out since. This week our friends Anne and Wayne came from Calgary to visit and sail with us for part of that time. When we made those plans I was able, but just before they came I had to tell Anne that we might have to cancel the Van Kedisi part. Even up to Wednesday night I was protesting that we could manage. But we are glad they came nevertheless. Dick got to cycle out to Sooke with Wayne while Anne and I hung out here. The three of them have cooked wonderful meals and this morning I managed to teach Dick how to make Elaine’s grandmother’s baking powder biscuits for breakfast. It was a great break for Dick too.</span></div>
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<span style="font-kerning: none;">I am now number #1 on the list for the Victoria Hospice. The pain has increased day by day and my medications both routine and for breakthrough have gone up at the same time to the point that I have only been out twice all week, once for blood work and the other for chemotherapy. I started a new chemo drug on Thursday as my oncologist feels that Paclitaxel is no longer working plus side effects like tinnitus and neuropathy have crept in. </span></div>
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<span style="font-kerning: none;">So the pain is bad, but hopefully a surgical intervention will stop the pain even though though there are possible side effects. It is neuropathic pain caused by the tumour in my axillary area that is wrapped around the neurovascular bundle of the brachial plexus. Sometimes the burning, throbbing pain radiates from my scapula and and often goes right down my arm to my fingertips. That is happening right now and the fingertips feel as though electric currents are firing out. My recent scans showed nothing amiss but something is happening to create the pain. </span></div>
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<span style="font-kerning: none;">I am happy to say that I have won 2/4 games of Ticket to Ride while taking Methadone on a regular basis along with frequent Hydromorphone for breakthrough pain so it seems that my brain is still functioning. Anne dislikes Settlers of Catan which is just as well as that game just may be beyond me at this point. </span></div>
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<span style="font-kerning: none;">Anne and Wayne leave this afternoon so Dick will be back to full time work here. Trust me, this is not easy for him with the changes hitting us so quickly. Nevertheless, this is not life threatening as my tumour is considered local or regional so far. Not to minimize the lack of use of my right hand and the debilitating pain but if the surgical intervention we are looking at is successful, then the pain may be eliminated. As my cancer agency pain doctor said a week ago, losing some more mobility is probably better than having to lay around most of the time. I agree. Despite knowing it s not my fault, I feel so useless.</span></div>
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Monday, August 12 update. I have been admitted one of what they call acute beds in the Victoria Hospice. There are 7 acute/respite beds here and 10 beds for those approaching death. I was here last spring for pain management too but this time the pain is far more severe.I will keep on a more regular basis but I already feel better in hopes that we will see progress sooner than later.</div>
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Also, Mary arrived last night and will be with us, working and visiting until she and her partner David head east to visit his relatives for a short visit. They both return after labour day to head back to Uvic. Before they leave Steven and partner Heidi move back from Nanaimo where Steven has just completed a university program. Andy who lives in Terrace where he finished his BASc in Nursing in May SUMMER UPDATE 2019is flying in on August 22 for a week. It is not often to have all 3 kids here in Victoria at the same time so I look forward that. Maybe I will even be home by then.</div>
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This photo was taken July 20th</div>
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Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com1tag:blogger.com,1999:blog-7897726862114746516.post-57946843509359749872019-03-09T19:30:00.000-08:002019-03-09T19:32:36.808-08:00LIFE IS PRETTY GOOD<br />
Much thought goes into the beginning of a blog post for me and it usually there has been a reason for reasons for me to want to speak up. In the 7+ years since my first breast cancer diagnosis the roller coaster analogy is never ending though the ups and downs do have those plateaus where you catch your breath or the ride comes to and end. Unlike the roller coaster, once we are faced with metastatic cancer, stage IV or simply cancer that will never be cured, it is difficult to banish thoughts of what's next or how long do I have along with facing the necessary details like wills and end of life plans. Of course we all have to face these things but somehow having metastatic cancer can make it more imminent.<br />
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Back to the purpose here. Christmas came and went and was wonderful. Soon after everyone returned to school I fell back into a trap that happens once in a while. When this happens I find myself wanting to know more about my stupid tumour or the blob as I often refer it as. No matter how unreal it is, I want to think that there must be some way to attack and release the tumour. In early January I saw my family doctor who was sympathetic and sent me off to a plastic surgeon that I had seen before. But of course she said again that there is nothing that can be done. She had sent me last year to the best team in terms of surgery but once they saw the scans they said it was hopeless. I guess I buried it in my mind and had to hear it one more time. I cried a few tears, went home and called M.D. Anderson in Houston, Texas one of the two preeminent cancer centres in North America. After several telephone calls I was sent a package. If I wanted to have my case looked at by an assessment team I needed to send every single scan from the beginning plus just about every document also from the beginning. The cost of the team looking at my case would be US$16,000 to 32,000. We had called our insurance company and they would have paid for the second opinion. It only took me about 24 hours to think it through and know that it was really not worthwhile. The plastic surgeon also gave me names of two doctors in North America one in Toronto and the other in St. Louis who do brachial plexus surgery. I have pondered making phone calls but the reality is that no one will touch a tumour entangled around the neurovascular bundle of the brachial plexus. Chances would be good for bleeding to death or losing all control of my arm. My oncologist says it is very common for patients to go back every once in a while try and find a way to make it all better.<br />
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Once I got over those few days in January my positive self emerged and I started yoga, exercise and meditation classes at Inspire Health again and decided to get some counselling. It is helping.<br />
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Here is a little excerpt from my journal which I planned to add to this post.<br />
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Sunday March 3, 2:17 PM lying in bed feeling very weak and suddenly a bit afraid. This is going into a blog post but I will try to encapsulate my feelings around my health and how it has been for the last couple of weeks. The brachial plexus infusion which was nine days ago has done nothing in my estimation. I am feeling more pain now. Scary again.<br />
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So what are the things that are of concern with my metastatic breast cancer right now?<br />
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Continuing pain which is manageable as always with narcotics. So not a big deal? Yes or no? It depends on the situation and the timing. <br />
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Mental status. This one goes up and down and sometimes on an hourly basis or worse. But also it can be brought it on after several months of seeming normalcy.<br />
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Activity level. This one is very difficult to describe. I am sick right now well into week 2 on a cold and cough very productive with green phlegm. I feel as weak as I have ever felt well maybe not as weak as when I needed blood transfusions. But this is a weakness that I do not like but am getting used to at this point I guess.<br />
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Scaredy-cat level is at one of the more highs than usual.<br />
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March 9th, 2019. I had an MRI last Saturday night and I had a CT scan Tuesday morning along with the usual bloodwork and then chemotherapy on Thursday morning, the third Thursday in a row. Along with Paclitaxel I get Dexamethasone which is a steroid to ward off any allergic affects of the chemo drug. Mary was in a session called "Tremendous Trees" that was part of Ideafest at UVic this week and one of the things she learned is that Taxol drugs (Paclitaxel being one of the Taxols) originally came from the yew tree. That was kind of a fun trivia fact I was aware of, having had Taxol back in 2012 but it was interesting that she learned about it from a session on tree research. Hey this is one of the positives of having breast cancer~~ we learn a lot. I must add that allergic reactions come from the fillers used, not the Taxols themselves.<br />
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Back to chemo day. Then I get Benadryl, another allergenic drug along with Ranitidine in case of nausea. The dexamethasone and the Benadryl fight each other so I feel wired but tired. Usually I come home feeling a bit weird but also energetic. This week not long after chemotherapy I decided to do some pruning in the garden after Dick and I had gone for a walk. I pruned my way up to the road and tried to get up from a sitting position. However with only one arm/hand working and weak legs I managed to throw myself onto the roadway. Tripping and falling have become quite common no doubt due to medications, chemotherapy and stupidity on my part. Icing, Ibuprofen and bedrest seemed to do the trick and gave me time to work on fundraising for today's event.<br />
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That was Thursday afternoon and today as many of you know I walked 5 km with my special little team called "Breast Cancer Eh?" Dick, our daughter Mary and her partner David joined me on Inspire Health's major fundraiser of the year. Inspire Health provides cancer patients many resources such as counselling, yoga, individual exercise routines, nutrition planning and more. All of this is free with money coming from a grant and this big fundraiser today.<br />
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It was only Wednesday while lying in bed that I decided to form a team and get the word out to my friends all over the world. The response was heartwarming. Today was a beautiful day in Victoria, relatively warm (6C) with no wind and I actually managed to walk the 5K, something I did not think I could do. I have to throw in the fact that we came 5th in team donations.<br />
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I have left the best for last. My oncologist phoned late yesterday afternoon with good news. Both the MRI and a CT scan appear to show stability with no signs of progression.<br />
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Maybe there is another trek in me yet but I have a long way to go on strength and balance. For sure I am feeling positive.<br />
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Love to you all,<br />
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Marian<br />
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Relaxing on Dean and Marie's catamaran in the Bahamas in February.</div>
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Dick, me, Mary, David and Franny the pug today at the end of the inspire Health 5K walk.</div>
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com0tag:blogger.com,1999:blog-7897726862114746516.post-42869865602055883152018-12-22T20:31:00.000-08:002018-12-22T20:31:39.046-08:00CHRISTMAS 2018With only a few days until Christmas I am feeling a mixture of happiness and excitement along with a bit of of nervousness. I have written in the past about Christmas not being my favourite holiday. However my first Christmas with breast cancer in 2012 was one of the best. Two families got together in our home in Vancouver and for several days there were up to 13 people celebrating with good food, wine and company. Although my taste buds made everything taste like cardboard, including good wine, it was the companionship that made that holiday so much fun.<br />
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This year our kids and their partners along with a nine-year-old are now gathering. Christmas Eve we head for Mount Washington on Vancouver Island for four nights in a spacious townhouse. Everyone is pitching in for meals and all that goes along with that. My main job will be relaxing while trying not to supervise too often. There has been enough snow in the past 10 days for all snow sports. I hope to snowshoe at least once or twice and thankfully the Nordic area is right next to our townhouse and downhill is ski in ski out.<br />
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Just two days ago I finished my third IV chemo on my new regime. It is called Paclitaxel, one of the same drugs I had back in 2012/13. This time it is a reduced dosage given every week with a week off. Luckily I get Christmas week off. So far I am feeling good for the most part. I do need to rest and take myself off to quiet spaces when I feel overwhelmed.<br />
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The last chemo which was oral caused me hand/foot syndrome which made it painful to walk. One of the trade-offs this time is that I will lose my hair and I may still have some neuropathy in my feet and hands but for now I am okay. I am also hopeful that this chemo may push back the tumour that is wrapped around the neurovascular bundle of the right brachial plexus. I still have intense pain but it is managed.<br />
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My next post will be in 2019, 1 1/2 years into metatastic breast cancer. There have been some rough times in the last while but I feel as though I am entering an upward phase with much hope. My family and friends continue to support me even when I am sad or angry.<br />
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I wish everyone a wonderful holiday season no matter where they are or who they are with.<br />
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Love Marian<br />
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This is my latest hairstyle. In 2012 Mary shaved my hair into a mohawk for fun but it only lasted an hour or so. This time I decided to have more fun with it and until it starts to fall out I will sport this mohawk, colours and all.</div>
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com0tag:blogger.com,1999:blog-7897726862114746516.post-27185787337877260672018-09-30T10:31:00.001-07:002018-10-19T16:01:52.690-07:00PROGRESSION AND HOW IT IS AFFECTING ME.After writing several posts without publishing I am hoping that I can form the words I want to in order to explain my hesitation. When I last posted I it was about the main events that can cause stress in our lives. That post spoke about how the move created stress in our lives.<br />
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The second stressor for us falls into the category of a "major illness or injury" When we/I bought our Victoria home in January, 2017 with possession in June I had no idea that I already had metastatic breast cancer. We took possession June 20th and I returned to Vancouver on June 25th for removal of my implants. I really did think the problems I had had with my reconstruction much earlier and then with the second try for reconstruction in December, 2016 were part of the problem. Not so and two months later I was diagnosed with metastatic breast cancer. Fast forward one year and that metastatic cancer has progressed.<br />
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I feel lucky that this progression was found. The reporting of an MRI I had in June during my stay at the Victoria hospice for pain management showed stability. Fortunately my wonderful oncologist sent the June MRI for review by the wonderful head radiologist in the Vancouver cancer agency. He had followed my testing last summer and also did the core biopsy which led to the diagnosis of metastatic cancer. With both MRIs, he was able to compare this new one with the diagnostic one from last year. Sadly it showed a lot of progression as well as some hot spots.<br />
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Last week I had a full bone scan and tomorrow I have a CT scan. In November I will have another MRI. Of course I hope that there is no change. The day after we knew there was progression, I was taken off the wonder drug Ibrance. Its purpose was to stop the multiplication of cells. After one year on Ibrance I am now on chemotherapy.<br />
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By the time the progression was found the pain had become excruciating despite a change to methadone. I have another narcotic for breakthrough pain and I would often find myself taking it five or six times a day. While I was in hospice I had a consult with an anesthetist who specializes in nerve blocks. I have had two Stellate Ganglion blocks so far and my pain has decreased significantly. However it is short acting so it must be done every 2 to 3 weeks. I am hoping for a block that is more invasive but is long term. My doctor has started the application process but it is very expensive and must be approved by the cancer agency and it is dependent on their funding. Also they must find me to be credible candidate.<br />
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I have no use in my right hand and gradually the action in my wrist is diminishing too. One of the side effects of the chemotherapy affect the extremities and as I understand it, the toxins pool there. The bottom of my feet are bright red and painful but with the help of another woman in my metastatic support group at the cancer agency, I got ahead of it before any cracks or blistering occurred. I soak my feet several times a day in lukewarm water and apply a special cream that my friend brought me. Unfortunately it has affected my left hand and I have painful cracks appearing under my nail beds.<br />
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These side effects are more annoying than anything else but they make me feel useless and everything takes twice as long. However as in most of you know, I am not one to give up and I am often as busy as I was before.<br />
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This second stressor of a major illness has created frustration for me and I do wonder what is next. I know that I am not always easy to live with and it is difficult for both of us. I need more help which is hard to ask for as I have always been independent, again something that most of you know about me. Dick is not captain of this ship, but for five years he has been in sole charge of our catamaran Van Kedisi, often for several months at a time. Now that he and the boat are home I think it is hard for him, especially as he would have preferred to live in our old house in Vancouver. To come home to Victoria to a house that he did not choose has been very stressful for both of us. He keeps saying that this transition will take time and maybe years in fact but for me, I do not know if I will be around when he finally settles here.<br />
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Metastatic breast cancer is different than breast cancer where we can hear that we are NED or no evidence of disease. The best that those of us who have metastatic breast cancer can hear is NEAD or no evidence of active disease. I am not at that point and I do believe that I will live for many years. However It would be easier to live with my cancer with both of us on the same team. On a positive note, I do feel that it is possible but it has been important for me to write this post even though it has gone through several iterations.<br />
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Below, I have added some photos of our wonderful family and friends. For the most part as you can see we had a wonderful summer. If I find a computer friend soon I will put the photos into a better scenario and also add names. Meanwhile, it is fall and fall is my favourite season. I wish you all a wonderful fall too.<br />
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Our son Steven and his partner Heidi.</div>
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Patti and Lyle with us on an overnighter on VK.</div>
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Our good buddy Suzanne on VK~~she crossed the Salish Sea with Dick at the end.</div>
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Honeymooners Kath/Alan and our daughter Mary and her partner David with me on Saturna Is.</div>
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Honeymooners with Dick on VK.</div>
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Our wonderful friends Fred and Shelley who I have known for 40 years!</div>
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A selfie with the most amazing farmer I know.</div>
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I cannot say enough about the cats of our lives, Flobi and Jake.</div>
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Elaine and me~~so lucky to have her in my life.</div>
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Steven and Heidi with me.</div>
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With super sailors Jane and Russell who we have known since our kids were toddlers.</div>
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Jana not long before twins June and Iona were born with old Saudi friends Marie and Dean.</div>
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Dean sailed the last leg on VK and Marie flew to meet the crew from Wisconsin.</div>
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She also sailed legs on VK.</div>
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Captain Dick on Saltspring Island 4 days after he made landfall in Victoria.</div>
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My wonderful yoga/hiking buddies from Vancouver. They came to Victoria for a 3 day reunion.</div>
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From left at the back~~Brenda, Wendy W and Wendy H.</div>
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Front row~~Claudette, Marian, Mary and Diane.</div>
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com3tag:blogger.com,1999:blog-7897726862114746516.post-89134426707679831962018-08-07T22:24:00.000-07:002018-08-29T12:08:30.320-07:00TRANSITION This post was started several weeks ago but not completed. I had just started writing again about the second major stressor in our lives when summer sailing with Dick again delayed it. Somehow I pushed the publish button without realizing it. When a friend emailed me yesterday about its contents I was surprised of course, especially because where it left off, readers may have misunderstood. My apologies to any of you who read the unfinished blog post. I could have simply deleted it but feel that it is better completed.<br />
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Many blog posts have been written in my head since I last wrote. The past 14 months have been a period of transition. I like to think that I handle change well and so I expect others to do the same. Looking back, even before June of last year transition had begun. Before I explain this transition I want to talk about stress. We all know that there are some important events in life that create more stress than others.<br />
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The top five most stressful life events in no particular order include:<br />
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<li>Death of a loved one</li>
<li>Divorce</li>
<li>Moving</li>
<li>Major illness or injury</li>
<li>Job loss</li>
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There are other stressful events like marriage or the birth of a child but they are generally considered happy events. Most often, no matter which event we face, with time and/or personal or professional intervention, the stress may ease and in fact resolve.<br />
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For us, two of those five life events converged. Who knew back in January, 2017 when I bought our house in Victoria that cancer would reappear in my life soon after we moved? When I say "I" in buying the house rather than we is because Dick was in New Zealand having just crossed the Pacific Ocean from the Caribbean. We had been discussing a move to Victoria since the previous April and Dick had been gone for some months prior to that. Over those months I had not found the house that I thought would suit us but in early January the stars aligned, at least for me and I found the house of my dreams. Looking back, even though Dick agreed via Skype that we could buy the house, his heart was really not in it. Soon after the purchase and well before our move I spent two months in New Zealand with Dick. Near the end of that time the discussion of bringing Van Kedisi home came up. For me, the purchase of the house and the idea that our boat which have been like a family cottage for many years in Turkey would be in British Columbia made me feel the happiest I had felt in a very long time.<br />
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Little was I to know that this happiness would be fleeting especially for Dick. It took time for our Vancouver house to sell and that added stress. Yes, another facet of one of those most stressful life events~~moving. But eventually the house did sell. I had never loved that house and for most of our children's lives we did not live in it because we were in Indonesia or Saudi Arabia. However on our return from Saudi Arabia Dick invested hundreds of hours of renovations in it and did a great job. Over those years though I thought that we both had agreed that the work done was cheap and cheerful and that in five years or so we would move. Unfortunately neither of us really understood what we had said and it turns out that Dick's preference would have been to have live there for ever and die in fact in the house just as Walter next door did. How can two people have been together for decades get it so wrong? And who is to blame?<br />
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For those of you who have been following my breast-cancer blog you maybe wondering why I am talking about the sale of our home in Vancouver and our move to Victoria. We now come to the second major life stress~~cancer, and worse~~metastatic breast cancer inoperable and incurable. When I went to Nepal in late April 2017 to lead my last trek, I had no idea that cancer was growing but I knew that I was slower, older and it was time to stop leading treks, thus I called that trek my swan song. I am glad for that as it meant I ended my time working in the Himalaya with Razzu on my own rather than cancer forcing it.<br />
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Back to the stressful move. No one knew that a new tumour was insidiously growing~~possibly for as long ago as when the first cancer was detected. Since we did not know when buying our new house and selling the old one that I would find I had metastatic cancer, we'll never know if staying in Vancouver would have been a better option.<br />
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Once we had moved in late June of last year it was becoming evident that something was wrong. Surgery had been done to remove my implants and I had hoped the growing pain in my right arm and hand would disappear at the same time. This is old news yes but it fits in with the second stressor, which fits under "major illness or injury." As the summer dragged on, my husband was unhappy and uncommunicative and there was nothing I nor anyone else could do to alleviate his pain. I went back and forth to Vancouver for tests yet we barely talked about the possibility of cancer reappearing. It was a very difficult and lonely time for both of us. When the diagnosis came in late August we were already burdened with such high levels of stress that I am sometimes surprised that we were able to continue on. Looking back, I believe that all the work we had put into our relationship in the preceding few years of living with cancer made the difference. It was not as though a light went on and we went from unhappiness to happiness but we did carry on with the plans that we had made for Dick to return to New Zealand to bring the boat home.<br />
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Here, this post ends and the next one will begin with the return of Dick and crew along with yet more difficult news. However, I am happy to say that enduring more cancer and a move has not brought us down and we are well on the way up, readying ourselves for the next chapter of our lives.<br />
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Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com0tag:blogger.com,1999:blog-7897726862114746516.post-71750118589295111742018-05-13T13:03:00.001-07:002018-05-21T08:20:42.357-07:00CANCER MADE ME A MORE POSITIVE PERSON<div style="text-align: justify;">
Right at the start of my breast-cancer adventure I ordered two books. One was "The Breast Book" written by Dr. Susan Love. To me it is the Bible of breast cancer and is revised every five years. The second book was "Cancer Made Me a Shallower Person~~A Memoir in Comics" written by Miriam Engelberg." "Insightful, unflinching and painfully, painfully funny" wrote the Washington Post. Miriam's autobiography by comics takes her from initial breast cancer through metastastic cancer and her writing can make me laugh and cry in the same paragraph. For anyone with any stage of breast cancer I recommend both.</div>
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Here it is Mother's Day and I feel that I am the most blessed mother on earth. How can I not remain positive when I have three amazing children who love me? I cannot say the same for my own relationship with my mother when she was alive so I feel even more fortunate. I was lucky back in my younger days to have had a positive role model. My boyfriend at that time had a mother who taught me so much including a love for life as well as instilling in me, the belief that I am a good and worthwhile person. Parenting is a skill that cannot be taught but when we ourselves receive little or no parenting it is all the more difficult. Again I was fortunate to marry Dick who was a natural father from the start. Now <b>that I know</b> his sister and family so much more, I recognize that they grew up with more warmth and happiness than I. No family is without hidden sides but when one grows up with little or no parenting it is different. </div>
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Back to being a more positive person. I was trying to better define positive and found this:<br />
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<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;">A </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">positive attitude</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> doesn't </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">mean</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> ignoring life's troubles. It just </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">means</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> being an optimist and looking for the good in things, rather than being a pessimist and concentrating on the bad in things. Sometimes your perspective can make all the difference in the world.</span><br />
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<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif;">I like this and see how my perspective makes a difference. One of my </span><span style="color: #222222; font-family: "arial" , sans-serif;">pharmacists called me this week to discuss a new med but also wanted to tell me how the staff (small group of caring people) love me and my attitude. She said it is like a breath of fresh air when I come in, whether it is for my monthly injections, to pick up prescriptions or to talk through a new drug and its possible effects. There is always coffee if I want it and two easy chairs to sit in while we talk and sometimes one of the two owner's dog is visiting too. How can I not enjoy a visit? </span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif;">My whole cancer team appreciates my ability to try new things always with hope. This is not incidental. I have changed both oncologist and pain doctors because I did not feel the way I do~~yes I have incurable cancer but that does not mean that I should be part of a team that lacks hope and humour along with the willingness to go outside the box. Now I do feel a more positive energy when I enter BCCA.</span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif;">Day to day activities often include conversation about the lack of use of my right hand and I try to make it upbeat and again this allows for positive exchanges. My daughter says I am a "people person" and she is right. Mary now checks in on her extrovert mom often. Since my fall that required stiches and my black and blue face scared children (sort of a joke) I have wanted and perhaps needed the exchanges.</span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif;">I was a nurse albeit not for long, but I loved the back and forth of nurse/patient interaction. I hope to become a hospice volunteer and take a course in the fall. Luckily (haha) I will soon experience hospice care from the inside as my pain doctor wants to admit me for up to a week in an attempt to work out a pain regime. The nerve pain has increased and we have tried many levels of pain relief. One possibility is a lidocaine infusion and that definitely needs to be done under supervision at the hospice. We shall see.</span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif;">This is what my <span style="caret-color: rgb(34, 34, 34);">youngest son Andy said on messenger about the lidocaine. <b>"</b></span></span><span style="background-color: #f1f0f0; color: #4b4f56; font-family: , , "blinkmacsystemfont" , ".sfnstext-regular" , sans-serif; white-space: pre-wrap;"><b>And are you doing the lidocaine infusion? That is pretty awesome and probably very nice to hear! You’re a pretty badass lady mom!"</b></span></div>
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Through the grapevine I heard that my older son has said." I am his rock." Whether he said or not is not important~~ I believe it to be true.</div>
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My friends contain to be supportive and also tell me how positive I am. Sitting here on my deck this morning with a Nespresso coffee (one of the delights of my life) it is almost impossible to say how happy and positive I feel. I am grateful for so much. By July only a few weeks from now, Dick, Steven and Heidi and Maurie will be here having sailed across the Pacific. What a positive for both Dick, our kids and all the crew that helped in the voyage of the Van Kedisi. The catamaran that was our summer cottage as our kids grew up in the Middle East will now be our cottage in British Columbia. A one-handed deckhand won't be very useful but I will be a very happy and positive member of the sailing team.</div>
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I do need to say life is not always happy and rosy and positive. One year ago I was trekking in Nepal with a wonderful group of friends. it is hard now to believe I was able to manage that last trek. Yes I am grateful for it but my heart still hurts knowing that it really is beyond my abilities now to trek in Nepal. My positive spirit has enabled many people to go far beyond their comfort levels trekking in the Himalaya and that has added to my own happiness.</div>
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The times that my blood work goes so low that I have to take breaks from the cancer drug that is keeping my tumor at bay can bring me to despair but the support I have from my family and friends always brings me back. Becoming one-handed can frustrate me but also delight me when I find a new way. Typing one-handed or with dictation both come with annoyances but again, I am working it out. </div>
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To all those who say I am a positive person I thank you and today acknowledge it. Cancer has made me a more positve person.</div>
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Thank you my friends.</div>
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Much love and happiness,</div>
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Marian</div>
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<span style="color: #222222; font-family: "arial" , sans-serif;"><br /></span>Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com0tag:blogger.com,1999:blog-7897726862114746516.post-12231585046411919562018-04-12T21:42:00.002-07:002018-04-13T12:20:48.590-07:00CAN YOU TEACH AN OLD DOG NEW TRICKS?<br />
<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;">These sayings just represent what some people believe is </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">true</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> of most </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">older</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> people. As you'll </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">learn</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;">, though, </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">old dogs</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> certainly </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">can</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> be taught </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">new tricks</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;">. </span><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;">These sayings just represent what some people believe is </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">true</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> of most </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">older</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> people. As you'll </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">learn</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;">, though, </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">old dogs</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> certainly </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">can</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> be taught </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">new tricks</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;">. ... However, with patience and a motivated learner, </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">older</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> people and animals </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">can</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;">indeed </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">learn</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> to do anything a youngster </span><b style="caret-color: rgb(34, 34, 34); color: #222222; font-family: arial, sans-serif; font-size: 16px;">can</b><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 16px;"> do. </span><br />
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There is no denying it~~adapting to new ways is more difficult for me now as I close in on my 70th year. Not only am I ageing but the many drugs taken in the past few years, including chemotherapy and more recently Ibrance, Faslodex and opioids along with other test drugs related to nerve pain, affect me physically, mentally and emotionally. Ibrance is an immunotherapy anti breast cancer medication which causes fatigue, Faslodex works with Ibrance on a hormonal level, opioids are for relief of the intense nerve pain this recent cancer has caused~~all of this has been an onslaught for me. Almost a year ago I departed for Nepal with a bad knee, having thrown it out the night before. l was annoyed but having had a bum knee for years, it was not the end of the world and I always left for treks several days early both to acclimatize but also to make sure I was fit last minute. En route I developed lymphedema even while wearing my compression sleeve. My knee improved and the swelling in my hand went down and I had a job to do working with our team to provide a "trip of a lifetime" Since showers are few and far ?, I honestly did not notice that the lymphedema in my arm had never resolved. A month later, once home in Vancouver the symptoms of lymphedema continued but the pain from tingling, burning and throbbing increased. The blog posts since then have described my treatment since then, treatment not really being for lymphedema, but in fact an aggressive cancer.<br />
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My last post was over two months ago and since then there has been a rapid deterioration in the use of my right hand. I am one who is considered to be dominantly right handed and with ageing and medications, it has been struggle to adapt even to activities of daily living using my left hand. I still have the use of my right thumb but the latest seems to be that I will lose that too just as I did my pointer finger a couple of weeks ago.<br />
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I was in NZ mid February to mid March and it was a wonderful 4 weeks with family in NZ and friends from Canada. I cannot say enough about how well I was taken care of while we had so much fun, mainly in the Northland and including some good sailing with friends for almost a week then 3 perfect days with just Dick as we made our way north from islands near Auckland to Whangarei. Dick's sister Claire and partner Pat know our friends from Canada (Claire and Pat trekked with mainly Canadian friends to Annapurna Base Camp in 2014 so there was a mini reunion too. My 69th birthday took place at Pat's 70th birthday and what a party it was!<br />
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It was 4 weeks away from medical appointments other than my Faslodex injections administered by an ICU RN who had not done an IM injection for 15 years. Life is an adventure and getting my IM drugs the day before my birthday was just part of it.<br />
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My return March 10th went well and I had a few more days with my sister Kathryn and her husband Wilf who house/cat sat while I was gone. We had a good time which was in addition to a week together before I left. Not sure the weather in Victoria was much better than NS where they live but they claim they enjoyed it. I do know our cats were spoiled but provided great companionship according to Kathryn and Wilf. My return also included the very sad but meaningful celebration of life for our friend with CJD. Hundreds of us gathered in Vancouver to mourn but celebrate his amazing life of strength, teaching, generosity and much more. He has inspired me in many ways and when I am down or whiny, his strength comes forth yet again to tell me to keep going no matter the hurdles.<br />
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I have hoped for a different scenario than the one I left in February but sadly it is not to be. Mid March I could still tie shoelaces and use my right thumb and pointer finger. Now only my thumb works. I suggest you try using only your non dominant hand to do everything for even a few minutes but preferably an hour or more. Add intense nerve pain (helped immeasurably by opioids) and you will find that it is quite a chore. But I am still pretty happy and despite the time filled with appointments with massage therapists (one for lymphedema and one for fascial release on my chest wall), monthly visits with my oncologist along with blood work just prior, GP appointments and more. I have seen two plastic surgeons in the past month, one for a post op checkup (surgery last June) and another Tuesday to see a team~~plastic surgeon and physiatrist who work with nerves. Sadly they had nothing to offer me and I could tell that they genuinely wanted to. I am to be referred to another specialist who does nerve blocks so there is another avenue of hope.<br />
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The most recent medication prescribed by my pain doctor at the cancer agency is Nortriptylene. Previously I tried Lyrica also called Pregabalin which works for 1/8. Poor odds and the new one is 1/2. That is not me and I am currently weaning off it. I did see a GP who specializes in Medical Marijuana and I have just started an oil twice a day, very low dose. I am impressed by the company who provides my oil and they have 24/7 phone help. I will gradually increase the dosage but for now I cannot feel any effect.<br />
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Despite these trials and tribulations, life is good and friends/family far and near are close via phone calls, emails, Skype and FaceTime, not to mention good friends who have been immensely helpful right here in Victoria. Via a Facebook group called Oak Bay Local, I have hired a lovely young nursing student who has really improved my quality of life! She will also be helping me with some secretarial work and deck gardening. Spring is rumoured to be around the corner and I am slowly stating back walking. I believe the Nortriptylene made my balance worse. I had a fall Easter Monday and thankfully my neighbour was able to take me to ER for stitches. I still look like I lost the fight but it made me more careful and has been part of the reason I am weaning off the drug.<br />
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Adding to my happiness is the fact that Dick, first mate Maurie (a buddy from engineering school) and our older son Steven and his lovely Australian girlfriend Heidi will soon set sail from Tahiti heading for Hawaii and ultimately Victoria. I will also be posting for him on his blog set up years ago my another good friend who sailed the Atlantic leg in 2013. The link for that blog is:<br />
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https://sailvankedisi.wordpress.com <br />
On that blog there is a button you can press~~"follow" and you will receive an email any time there is a new post. I think there is also a link to my blog and another that shows you where Van Kedisi is.<br />
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One of the greatest blessings this past year is Edie, granddaughter of an old friend who I spent many hours with as she endured chemotherapy for metastatic breast cancer. Being flexible has meant that I have Edie sometimes once or twice a week then not for weeks. She will be here next week when Andy and Mary will also be visiting.<br />
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Now Friday, April 13th and I have added and labelled photos.<br />
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Love to you all!<br />
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My 69th birthday at Claire and Pat's in NZ.</div>
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Being presented to Queen Elizabeth on my birthday.</div>
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Dick and Suzanne in NZ</div>
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Dick, me, a friend, Suzanne and Sarah Roe (who provided awesome accommodation near Dargaville.</div>
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Sailing in NZ</div>
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Leighton family reunion on the Fleming farm~~2nd cousins of Dick.</div>
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Heidi, me and Steven</div>
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Shelley, Fred and Grady Galloway on a recent visit to Victoria</div>
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Yes, I am still fighting the battle against a Texas pipeline company!</div>
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Marian and Elaine on a lovely day last month in Vancouver.</div>
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Yet another G&T on VK~~Patti looks happy!</div>
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Van Kedisi Crew Maurie, Dick, Steven and Heidi</div>
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Beautiful NZ Kereru (pigeon)</div>
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Van Kedisi being loaded on a huge ship for transport to Tahiti.</div>
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Little Edie smelling the flowers and the Celebration of Life program for our dear friend who will continue to be an inspiration in my life.</div>
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com2tag:blogger.com,1999:blog-7897726862114746516.post-54735741024354038212018-02-01T13:13:00.000-08:002018-02-01T13:17:14.248-08:00CANCER COMMUNICATION AND CHANGES IN DAILY LIVINGMy usual opus memorandum for blog posts is to think about what I want to say over a few days with the intention of actually writing about those thoughts. What usually then happens is that my brain is so full that I end up writing a stream of thoughts which does allows me to winnow out what I really want to say. The writing is important to me~~even though I keep a journal, writing these posts becomes a barometer of sorts on my cancer and its effects over time.<br />
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For years after my first breast cancer diagnosis, I felt there was a monkey on my back. This common term has several meanings but for me, once I knew I had recurred, I felt that the monkey had gone. Not so, as the truth of the matter is that that little guy will always be with me unless I come to terms with not knowing what is next~~next being growth of my tumour or metastases in other parts of my body or ultimately death directly caused by breast cancer.<br />
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The last week or so has been very difficult as I approach the six month mark since diagnosis.<br />
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I have still not accepted the fact that I have minimal use in my right hand. Finding a good knife has been on my list for ages (not for stabbing Walkers from "Walking Dead" though I think if I had full use of my hand I could easily kill a walker, having binge watched several seasons in recent months) thinking that it would make it way easier to cut things when cooking. I went to House of Knives on Sunday and the nice young man explained and showed me how it makes no difference what kind of knife it is~~you have to have fingers along with the thumb to cut properly. "Activities of daily living" are impacted and I am lucky to be retired since it takes twice as long to do anything. I encourage you to spend some time using only your non dominant hand. Dressing, from pulling on socks to buttoning pants and shirts to using zippers~~each activity requires some fumbling to accomplish it. I have been unable to turn a key whether it be for a door or a car for months. Try flossing your teeth with one hand using your dominant thumb and bent forefinger to hold the floss. Cancer stares me in the face every day. With my first go with breast cancer, this was not the case and life went pretty much back to normal.<br />
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Those with rheumatoid arthritis have the same difficulties and I empathize with them. I am adjusting and for the most part, feel good when I find an easier way to complete a task. What does worry me is that my tumour will eventually grow. There is that monkey again. Writing this helps me to put it in perspective and slowly work towards a way to prepare.<br />
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Also there is the morning pain which always takes time to move beyond once I have taken my long action Oxyneo. I am so blessed to have our cats Flobi and Jake with me. They often work better than my alarm clock (which I still set every night and hit snooze over and over in the morning) because their insistent meowing and purring my my ears does have an effect. They need me to get up and either feed them or let them out if I have locked their cat door. At night they always sleep with me, Jake at the bottom of Dick's side and Flobi usually curled up close beside me.<br />
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Most often I have come to think "glass half full" and even this past week when I realized that cooking is no longer easy and so not so much fun, that when Dick gets home from the sailing adventure in the summer, we can make it team work. Most of you know I have tended towards independence especially over the past years with Dick sailing across oceans and me meeting him here and there but mainly keeping up the home front. I was also planning and leading the Nepal treks with my good buddy Razzu. I had my chickens to care for, I loved quilting and was OK for longer periods of time. I really miss Dick though I am so happy that he and his crew of Maurie an engineering mate and Steven and his girlfriend are going to bring Van Kedisi home. Thankfully Dick has made the wise decision to ship VK to Tahiti so none of us have to worry about them sailing thousands of nautical miles in the roaring forties.<br />
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Before I end this post, I want to return to the concept of death. When I am thinking rationally the idea of death does not scare me. However this past while, when feeling ill and sad, I did think about the what ifs of it being sooner than later. I am blessed with my immediate family who love me and call me and listen to me when it is not always easy. When I felt I was falling apart a couple of days ago, my wise and wonderful daughter called and I was able to articulate through tears, some of my recent thoughts. Loving family and friends and being loved by them is the ultimate goal in life and when we are gone there will still be memories. I am not ready yet and that was my fear. I want to leave more positive memories in ways I am not sure about yet. We will all die some day and I can only hope that I can live up to a couple of things I thought about over the New Year. Kindness and compassion are things that we all desire in our lives and I fail often. No matter how long or short my time is, I now have the opportunity to try harder to be kind and caring every day.<br />
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Please click on the follow button on the right if you want to automatically receive posts as they are published. You do have to have a Google account I think, or at least you do to add comments.<br />
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com1tag:blogger.com,1999:blog-7897726862114746516.post-34442092358745568082018-01-07T19:22:00.001-08:002018-01-07T19:22:09.741-08:00BREAST CANCER EH? YES AND FOREVER.It is now one week into 2018 and this will be my first post of the year, a year that I look forward to. The days are already getting longer which is a bonus for me especially when what I call sleepathons reappear every month. Towards the end of each cycle of Ibrance, fatigue inevitably hits and I am thankful that I do not have to work or get up early in the morning. Setting my alarm wakes me up but only long to hit the snooze button and eventually turn the alarm off. The cats get me up, but only long enough to feed them and open their door. Nine hours of sleep becomes 10 11 or 12 as it was today. However by the end of this week I will have had time off the wonder drug Ibrance and the cycle will start again.<br />
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Over the New Year's holidays I spent five nights in Vancouver couch surfing, albeit with good friends. I was there to spend time with friends we have known for decades but in recent years have grown closer to. Travelling and trekking together can do that to you~~ sleeping in tents in the high Himalaya, touring in Indian buses through Rajasthan, hiking in the rain in Haida Gwaii, this intimate time together can make or break friendships I think. However in this case our friendships have only grown stronger. Having metatastic cancer is no picnic but what our friends are going through pales in comparison. Our friend has been diagnosed with CJD, or Creutzfeldt-Jakob disease and his wife is suffering along with him if not more. It is a rare degenerative and invariably fatal brain disorder that affects about one in a million world wide. Because it is so difficult to diagnose much time has been taken to find out what has dramatically changed a strong, intelligent and caring man and I wanted to spend time with him and his family before the inevitable will happen. To me this is a tragedy and despite the support of family and friends it is indescribably sad.<br />
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It had not been I my intention to write about our friends in this post but something compelled me to do so. Being diagnosed with breast cancer twice in five years pales in comparison to what the disease CJD does. Friends and family rally around and we will continue to do so.<br />
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My intention is still to give an update and there will be some humour in it~~at least I hope so. I continue to mess around with pain management. I asked for and got a new pain doctor at the cancer agency because I felt that the previous doctor and I were not on the same page. Just before Christmas I saw the new doctor and she was receptive to what I have been considering. My tumour remains stable, at least it did at the last CT scan. The scan will be repeated in March. Meanwhile the the nerve pain continues predominately in my hand but when I have those sleepathons and miss the timing for my pain meds, I know that the pain is still in my arm and shoulder. Opioids will be in my arsenal for the foreseeable future but I hope to use medical marijuana as a co-analgesic. I am just at the beginning of the experimental phase of this. Apparently for nerve pain CBD's alone will not do the trick and some THC needs to be included. Ingesting pot via tinctures or sprays takes time to go through the system and I have found so far that it is inadequate.<br />
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During my time with the friends over New Year's I had discussion with one of the sons-in-law about smoking dope. He gave me a little bottle of homegrown and we discussed vaporizing versus smoking which I do not want to do. I bought a vaporizer a couple of days ago and unfortunately had no teachers here. I wish I had a video of me watching YouTube videos for my particular device. In most cases the presenter appeared to be stoned himself. I laughed out loud watching one reviewer completely panning my vaporizer with the second video later when he was not so stoned saying it was actually a good device. With the vaporizer I also bought 3.5 grams of Medi-Haze and probably wasted some while thinking there had to be some smoke. Once I figured out how to use it, I inhaled some of the vapor late in the evening the last two nights. Maybe it was because I was by myself, but I did not feel the anxiety that smoking dope has always created even when I was a hippie decades ago. I slept well both nights and to be honest I think that it did help with pain. Here is the link to the YouTube video I referred to. It did make me LOL.<br />
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https://www.youtube.com/watch?v=RgrWd46DjV8&t=5s<br />
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The night I bought the vaporizer but before I had experimented with it, I got an email from the dad of one of my kids friends, explaining that he had intractable pain and his daughter thought maybe I could help. Well, I just may be able to but he will have to go also for the first time go to a pot shop. Thankfully marijuana will be legal in July of this year in Canada. Unlike the United States this is a federal initiative. Sadly Jeff Sessions likens marijuana to heroin so those states that it is legal in are now having to rethink. I wonder if his boss has ever smoked marijuana.<br />
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On an even lighter note I have a criticism of the new low flow toilets. Those of us on drugs for breast cancer including chemotherapy IV or oral, plus the pain meds many of us are on, find that they wreak havoc on our bowels. When you plug up the toilet in the middle of the night while coach surfing as I recently did and the plunger is stiff and your right had does not work, what are you to do? I shut the toilet lid, found a piece of paper and a pen and left a beware note. Luckily no one was home when I sneaked out the door the next morning.<br />
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That's it for my first post of the year. I hope to be more kind and compassionate this year and to listen more. This second go with cancer has me happier and I am not sure why. I will explore this before my next post.<br />
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Happy New Year<br />
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Love to you all,<br />
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Marian<br />
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I continue to oppose Kinder Morgan and was protesting pre-dawn last week. I have the orange parka on.</div>
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Christmas Day with Andy, Mary and my niece Reilly and my nephew Jordan</div>
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com0tag:blogger.com,1999:blog-7897726862114746516.post-51496705431080613442017-12-12T15:27:00.000-08:002017-12-15T13:16:57.974-08:00FATIGUE UPDATE PLUSLearning to live with Ibrance and Faslodex, the big guns used to keep the cancer at bay has not been easy. When Oxycodone, Oxyneo and Lyrica for nerve pain are added to the mix, it is no wonder that some days I have trouble waking up. Diagnosis was August 22 so it has not even been 4 months yet. The last post was written when I was so tired I had trouble dragging myself out of bed. I forgot to mention that I had a surgical procedure only a few days before that post. Veins cannot be accessed on my breast cancer side and those on my "good" side are so difficult to access for blood work and contrast dyes for CT scans that I had a "Power Port" inserted in my chest. This quarter sized device connects to a catheter placed inside a central vein leading to my heart.<br />
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Yesterday I had my first blood drawn through the port and all I can say is that I love my port!<br />
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Also fairly recently I have added some tinctures, teas and topicals made especially for me by my oldest friend whose expertise I value. Although there is no way to know for certain, I like to think that these have made a significant difference.<br />
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As well, I joined the Compassion Society here in Victoria. It took awhile as I had to get a referral from my doctor but I have now had my interview and discussion re CBD's which was what I was after. Some of you may have read or heard about the value of CBD's, derivatives from marijuana but without the high of THC. Because of the illegality of marijuana in most parts of the US and Canada, there is little quantitative and qualitative documentation available. Parents of babies and toddlers with epilepsy have been fighting to allow there use of CBD's which seem to show real change in number and length of seizures.<br />
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I was unable to get pure CBD's at the Compassion Society so with the advice of a friend, I searched the site she gave me online and found a retail outlet in Victoria that sells it. Monday I joined a Victoria "pot shop" and found what I would consider a professional team who to seemed to understand my needs. So I now have medicinal pot in my arsenal but have yet to experiment with it.<br />
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Meanwhile, I am dropping Lyrica after being weaned off it for the past few weeks. Like opioids I am told, there has to be a gradual process in lowering dosages. I have also decreased the amount of Oxyneo I take twice daily and have rarely needed my breakthrough Oxycodone this past week.<br />
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Yesterday Andy came with me as official note-taker to my monthly oncologist visit. My blood work was great and Saturday I start round 5 of Ibrance and Faslodex! I am a believer in the high tech cancer drugs but also in the meds made by my friend. In the previous month my neutrophils were so low that I had to take a few days break from Ibrance. My energy is higher and I knew even before the blood results yesterday, that they would be acceptable. My oncologist also emphasized yet again that despite what he considers permanent nerve damage, that I can expect to be around for years to come.<br />
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Apart from the drug front, there is more to announce but that is for the next post. Suffice it to say that I am working with a physio, a hand clinic, Inspire Health (a British Columbia non profit with the goal of improving life for those with cancer), yoga and more. I have moments when I find tears unexpectedly falling down my cheeks but it is not necessarily because of my own cancer but also because I have friends who are facing more imminent and difficult times in their lives right now. There is much fragility in life and perhaps because I am a "senior" as are many of my friends and we find ourselves facing situations none of us would have thought of a decade ago.<br />
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This newest adventure in my life comes with the knowledge that it has actually opened my eyes to opportunities to interact with others in a more positive way just by the way I live my daily life. The ongoing climate change and often disappointing political decisions are with us and I am still planning to battle Kinder Morgan. My motto of "over my dead body" can now be taken with with some dark humour. I will be in front of the bulldozers should that need arise though I can only hope that we who oppose the pipeline will prevail.<br />
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Love to you all. If you want to be reminded of my posts as they cone, press the "follow" button on the top right of your screen.<br />
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Marian<br />
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com1tag:blogger.com,1999:blog-7897726862114746516.post-17097309501565600192017-12-03T19:31:00.002-08:002017-12-12T14:22:40.127-08:00FATIGUE AND ITS SIDE EFFECTS (on me)<div>
<span style="color: #222222; font-family: "arial" , sans-serif;">Waking today from yet another marathon sleep of 12+ hours was not a happy moment. For some who are exhausted from legitimate work, exercise or lack of sleep to number a few causes, sleeping "away the day" could be a good thing. For me, it was not a good feeling. Having my first shower since Wednesday AM (reason for this further along) made me feel good temporarily but it was brief. I fed the cats and filled the bird feeders and took my pills meant for 0800 instead or 1300 and then contemplated the day. Looking around, I swore I would file the endless medical reports, change my sheets, return the many library books that have spirited their way home but remain unread or go for a long walk since it is not raining and maybe even think of something exciting to cook for dinner. Breakfast and lunch has been peanut butter and toast along with a big glass of milk plus a Nespresso. This seemed a healthy start to what can only be a short day. I have now reheated my coffee more than once while going through a myriad of emotions and as I type, sadness overflows into tears that do not often spill. So what is causing this fatigue that I may have to learn to live with? </span></div>
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Definition of fatigue:</div>
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extreme tiredness, typically resulting from mental or physical exertion or illness.</div>
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"he was nearly dead with fatigue"</div>
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<tr><td class="lr_dct_nyms_ttl" style="font-style: italic; padding: 0px 3px 0px 0px; vertical-align: top; white-space: nowrap;"><br /></td><td style="padding: 0px;"><span class="_Yht" data-term-for-update="tiredness" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoILzAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">tiredness</span>, <span class="_Yht" data-term-for-update="weariness" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoIMDAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">weariness</span>, <span class="_Yht" data-term-for-update="sleepiness" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoIMTAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">sleepiness</span>, <span class="_Yht" data-term-for-update="drowsiness" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoIMjAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">drowsiness</span>, <span class="_Yht" data-term-for-update="exhaustion" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoIMzAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">exhaustion</span>, <span class="_Yht" data-term-for-update="enervation" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoINDAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">enervation</span>, <span class="_Yht" data-term-for-update="languor" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoINTAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">languor</span>, <span class="_Yht" data-term-for-update="lethargy" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoINjAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">lethargy</span>, <span class="_Yht" data-term-for-update="torpor" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoINzAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">torpor</span>, <span class="_Yht" data-term-for-update="prostration" data-ved="0ahUKEwiOouu16O7XAhVW8GMKHdwOCgUQ_SoIODAA" jsaction="dob.uwt" role="link" style="color: #1a0dab; cursor: pointer;" tabindex="0">prostration</span>;<br />
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war-weariness</div>
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"his body was slumped from fatigue"</div>
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<span style="color: black;">Darkness has now fallen and the only thing accomplished was a walk to the beach just before sunset. I had not forgotten this blog post but the walk was much needed. I am an extrovert by nature but I also feel the need to retreat at times when retreat is really not healthy. Of course the fact that the sun was shining and people were also out appreciating a break in the rain seemed to allow for friendly conversation here and there. </span></div>
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<span style="color: black;">Back to fatigue which has lad me today also to ponder the meaning of fatigues, naturally coming from the word fatigue and it occurs to me that this word <i>"fatigue"</i> originally comes from war and the terrible exhaustion of battle.</span></div>
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<span style="background-color: white; color: #444444; font-family: "open sans"; font-size: 15px;">In the 1770's, </span><i style="box-sizing: border-box; color: #444444; font-family: "Open Sans"; font-size: 15px;">fatigues</i><span style="background-color: white; color: #444444; font-family: "open sans"; font-size: 15px;"> meant "extra duties of a soldier," from </span><i style="box-sizing: border-box; color: #444444; font-family: "Open Sans"; font-size: 15px;">fatigue</i><span style="background-color: white; color: #444444; font-family: "open sans"; font-size: 15px;">, or tiredness. It came to also mean "military clothing" in the mid-1880's</span></div>
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<span style="color: #444444; font-family: "open sans";"><span style="background-color: white;">I wonder if it can from the French word "fatige." how does one </span>type an acute "e?" Then the Turkish word for tired came to mind~~for some reason that word which is "yorgun" was also dredged up. It must be that I used yorgun often when we spent our summers in Turkey. It was maybe because our kids were little and at night when Turkish kids were still full of life, ours were "cok yorgunlar." While checking out the correctness (mine is not) I found this. More fun ahead. </span></div>
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<a href="https://books.google.ca/books?id=f7rKAgAAQBAJ&pg=PA98&lpg=PA98&dq=turkish+word+for+tired+or+fatigue&source=bl&ots=13DFjP8FHS&sig=SW8gJXURBWTey3pJp7wD8hyIxkY&hl=en&sa=X&ved=0ahUKEwjx1crPoe_XAhVY9mMKHeBCA-8Q6AEIazAK" style="color: #660099; cursor: pointer; text-decoration: none;">A Turkish Folktale: The Art of Behet Mahir</a></h3>
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Warren S. Walker, Carl Lindahl - 2014 - Literary Criticism</div>
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<span style="color: #545454;">That shout was both a battle cry and an expression of Hamzai's great</span><span style="color: #545454;"> </span><span style="color: #6a6a6a; font-weight: bold;">fatigue</span><span style="color: #545454;">. After seventeen years of pursuit, he was so</span><span style="color: #545454;"> </span><span style="color: #6a6a6a; font-weight: bold;">tired</span><span style="color: #545454;"> </span><span style="color: #545454;">that his mother's milk ran out of his nose.146. If I were to tell you about all of the difficulties he had encountered during those seventeen years, this story could not be completed in less than a year.</span><span style="color: #444444; font-family: "open sans";"><span style="font-size: 15px;"> </span></span></div>
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<span style="color: #444444; font-family: "open sans";">Tomorrow's post will actually be what I think is causing fatigue. Cancer can be fun. Learning how to blog and figure out how to change fonts etc.~~less so. If I work it out I will fix it in this post but now before fatigue gets me again~~time for dinner.</span></div>
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<span style="color: #444444; font-family: "open sans";">Please note that if I have not bored to sleep as opposed to fatigue then there is a way to read my blog posts as they occur. </span><br />
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<span style="color: #444444; font-family: "open sans";">There is a FOLLOW button just below the followers. Sadly you do have to have a Google account (i.e. gmail) to follow me or make comments good or bad.</span><br />
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<span style="color: #444444; font-family: "open sans";">Namaste,</span><br />
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<span style="color: #444444; font-family: "open sans";">Marian</span></div>
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Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com1tag:blogger.com,1999:blog-7897726862114746516.post-29573024677902151992017-11-15T23:03:00.001-08:002017-11-15T23:05:11.709-08:00MBC~~METATASTIC BREAST CANCERI have joined a new club and it is yet another that I have no interest in. i noticed that I got tenses wrong in one of the last posts. My first tendency was to "edit" but chose not to because I saw that they were past tenses and perhaps I needed to write it like that. But I am clearly in the present with MBC. The last couple of months have been so busy with countless appointments that it is hard to go through even an hour without remembering that I have cancer and this time it is not going away.<br />
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But life goes on and it is good with lots to look forward to as well. Dick left for NZ almost two weeks ago and is working on VK while staying with Claire and Pat. I already have my ticket and will spend 4 weeks in NZ mid Feb. to mid March along with good friends who go at the same time. More sailing fun ahead! I talked to BCSA security yesterday about bringing pre loaded syringes and ice packs through security at YVR and it seems straight forward.<br />
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I love Victoria and our home and the ever changing views though it is not all sunshine and roses. My drug regime makes one of our kitchen counters look like a small pharmacy. The big gun immunotherapy drug Ibrance that I am on 3 weeks out of 4 is hard on my immune system. Last week my white blood cells and neutrophils were so low that my oncologist called to say I had to stop taking the drug for the last few days of my cycle. I still had several appointments in the days prior to the weekend including a CT scan with contrast Friday afternoon. The hospital was so busy that it took much longer than it should have and by the time it was done so was I. I slept 15 hours Friday night.<br />
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Tomorrow I see my medical oncologist for the results of the scan and will find out if the palliative radiation and the Ibrance and Faslodex have shrunk my tumour or the blob as I call it. It is actually the blob and its tentacles that are wrapping around the neurovascular bundle in the brachial plexus.<br />
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There has been some release of my scapula and the excruciating pain each morning is virtually gone and this occurred 3 days after the radiation ended. Unfortunately my arm and hand have not been so fortunate and I still have very limited use of my right hand. It feels cold all the time and this is due to the blood system along with the nerves not signalling normally. I also have severe lymphedema but in the past week have been treated by a physiotherapist who puts a large sleeve over my arm and hand and for two hours a pump tries to get the lymphatic fluid moving. I have an appointment with a hand clinic next Monday to see what can be done to keep my thumb and fingers from further damage.<br />
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Enough for tonight but I did want to get an update out.<br />
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Love Marian<br />
<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com4tag:blogger.com,1999:blog-7897726862114746516.post-17894030446648665622017-09-13T18:12:00.001-07:002017-09-13T18:12:27.246-07:00Good news~~still metastasized breast cancer but looks like long term treatable.Although my treatment began immediately after my diagnosis, I did not see my new medical oncologist (MO) until today. Prior to our move and up to the diagnosis, my team was in Vancouver. Treatment began immediately in Victoria and now my team is here.<br />
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Dick and I met with him this afternoon for almost an hour. Dick took notes while the doctor and I went over treatment plans, staging and prognosis. The last one is iffy at best because no one can say for certain but it seems that my cancer is treatable with no imminent death in the cards but rather I have years ahead. Good news for Dick too as the doctor felt there was no reason for him not to go to NZ as planned in November to begin the process of getting a new engine installed in Van Kedisi along with other work needed. He will plan to leave NZ in March to sail home via Tahiti and Hawaii. He was not too happy about the other option of getting VK home by ship at a possible cost of US$50,000! I can go to NZ in February for 3 weeks or so in between drug injections which will be every 28 days. The other drug is oral and is taken 21 days in a row with 7 days off. Maybe I can even meet him in Tahiti in May.<br />
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I will be monitored closely but for now we can relax a bit and enjoy our planned trip for a mini Aramco reunion next week. We will spend Thanksgiving north of Terrace with Andy and Mary and we will have time on the Nagata Family Homestead where Dick may even be assigned a project. For anyone who knows Dick, he loves a good project.<br />
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The not so good news is that the nerve damage I already have may not disappear. But on the other hand, it should stabilize and not worsen at least for the short term. I am on opioids for the pain it has created so I do hope for some changes. We visited the pain clinic last Friday at BCCA to go over my pain management and for now we do have a plan that is working. Though I did know that opioids work by going to the pain receptors rather than making me high it was good to hear it from a professional.<br />
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We celebrated the good news by going to the Oak Bay Beach Hotel for happy hour. Today also I got to the half way mark for my 8 sessions of palliative radiation.<br />
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com5tag:blogger.com,1999:blog-7897726862114746516.post-39762296764760029552017-09-12T12:52:00.001-07:002017-11-15T19:23:21.148-08:00 Cancerland #2~~"Breast Cancer Eh?" morphs to WTF.Yesterday I decided it was time to post an update after months of procrastination. I had been at least posting annually but this year when that time came I was beginning a summer of uncertainty which covered the period of time from early June to August 22.<br />
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2017 had already been a busy year. In December my breast reconstruction that had been causing all kinds of problems like cording and contractures, was redone. In early January I bought a house in Victoria. Though I had been looking since the previous April, one could say this was impromptu but the moment I entered the house, I knew it was for us. After a Skype call with Dick I made the offer on January 7th, went back for inspection January 11th and spent all week getting our Vancouver house in order for listing. Saturday, January 14th, one week after buying our new home, I flew to NZ to spend two months with Dick.<br />
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Our house in Vancouver sold March 14, two days after our return. Next was my planned swan song trek to Mustang (real name Lo Manthang) in Nepal with a wonderful group of 12 friends and friends of friends. I had been saying I was ready to retire for 5 or 6 years but I really felt this trek wold be my last. While flying to Nepal, I developed my first lymphedema ever but was so busy with the trek that I did not really pay much attention. I had also had my right knee go out the night before departure but it always seemed that something unexpected happened on these trips and all would work out. It did work out and was an exciting and memorable trip from beginning to end.<br />
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On my return to Vancouver from Nepal in late May I was already scheduled for my 6 monthly cancer checkups as well as a post op visit to my plastic surgeon. We both felt that the latest reconstruction was failing and he agreed to take it all out. Meanwhile we packed and sold stuff and tried to downsize. We moved June 20th with the help of Steven who came home from Australia for a month and he was amazing, not only with the physical challenges of a huge move but I found that his people skills had grown so much. He was able to intervene when tensions ran high as can happen during a move! We had also hired a professional mover and he and his crew were amazing.<br />
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June 26th I returned to Vancouver for my surgery and Andy flew down from Terrace to bring me home a few days later. I had hoped that surgery would make some significant pain and nerve issues radiating from my scapula to my right hand disappear but nothing changed and these symptoms of something serious continued and in fact worsened. I was back and forth to Vancouver 6 times over the next few weeks for tests at BCCA and it became evident that the pain and nerve problems were part of something much more sinister than I could imagine.<br />
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The wonderful doctor who had followed all my tests at the cancer agency did a core biopsy August 17th and it was evident to me and my friend Suzanne who came in with me, that it was most probably cancer. He gave us both his cards and said to email him after 3-4 business days if I had not heard from my medical oncologist. I told Dick early on day 4 that I would wait until noon to email him, then I said maybe 10 AM and at 0810 I sent him an email. I simply could not wait any longer.<br />
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August 22 will be one of those dates that I will always remember. Of course we all have dates/events that are imprinted on our minds and not all involve us. But births, marriages, death and other significant events usually stay with us. My mother used to fax Dick close to our anniversary date so that he would remember. Odd that she not do the same for me! But half an hour after I sent that email, the doctor called. Yes it was a recurrence of breast cancer. We spoke for a few minutes but he was already late for a meeting and said my oncologist would call.<br />
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The next day I impatiently waited for the call and finally left a message asking when this call would take place and soon after, on speaker phone with Mary taking notes, we heard the news. I had known it was probably cancer for awhile but never did I expect what she had to tell us.<br />
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My breast cancer recurrence was inoperable and incurable but treatable. A brachial neurovascular nerve bundle was entangled around the tumour on my chest wall thus the inoperable part. I have always felt that for me, there was a high chance of recurrence given the aggressiveness of my original cancer. But to be facing metastatic breast cancer was a big shock for all of us.<br />
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We had speaker phone calls with the boys and Mary was with us. This was exactly three weeks ago and I was surprised at how fast the cancer wheels were set in motion. For now though, I want you all to know how important you are as I move forward in this new adventure. I do look upon it as that and hope to blog for a very long time. It is very difficult to have such uncertainty but as always, I am heading into this latest test with humour which I plan to incorporate into some of the future posts.<br />
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Another 3990 meter pass en route to Lo Manthang May, 2017</div>
<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com13tag:blogger.com,1999:blog-7897726862114746516.post-16332521195583503962016-06-18T14:41:00.003-07:002016-06-18T14:41:49.797-07:00Summer is coming!This seems better than "Winter is coming!" I have yet to see this season's episodes of Game of Thrones and wonder if permanent winter has come yet to the kingdoms. Back to the present though~~it is a rainy Saturday in June so a perfect opportunity to write blog posts. The first one today was an update for Dick's continuing adventure on our catamaran, Van Kedisi. <a href="https://sailvankedisi.wordpress.com/2016/06/18/french-polynesia/" target="_blank">https://sailvankedisi.wordpress.com/2016/06/18/french-polynesia/</a><br />
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Tuesday evening my friend Suzanne and I depart for Papeete, Tahiti to join Dick and Rick onboard Van Kedisi for two weeks of adventure. It will be interesting to see a totally new place where relatively few people I know have ever gone to.<br />
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Breast cancer has been on my mind this week as two friends started treatment for recurrences yesterday. One woman is from our breastcancer.org 2012 chemo group who was with so many of us in Las Vegas in 2013. The other was in our Cowgirls versus Cancer retreat in Montana in spring, 2014. We hold them in our hearts even from afar. Our amazing massage therapist from that retreat was diagnosed with breast cancer not long ago and she has gone through the chemotherapy part of treatment so far. My BIL, Wilf has had two surgeries and chemotherapy for colorectal cancer diagnosed with one of those simple stool sample tests last fall. Thank goodness he did do that test even though for him at the time, it was routine with no expectation of cancer. He will do 4 months more of chemotherapy once he recovers enough from his April surgery. He and my sister Kathryn continue to amaze me with their positive outlook and resilience.<br />
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As is comes up to almost 4 years since I found my infamous lump, life goes on of course. Briefly, the same old cancer take-aways persist but none of them life threatening, just annoying and daily reminders unfortunately as without them I think I could forget that this ever occurred. I think I must write a post about breast cancer and aging, since often the lines are blurred on which causes which symptoms.<br />
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Depending on who I ask~~physio, massage therapist, breast surgeon, plastic surgeon, GP, or others who have similar treatment, I get many different answers or rationales for the ongoing irritants. My right scapula has been popping out and along with shoulder pain and weakness plus the cording under my arm it is clear that the symptoms are related to surgeries and radiation. But osteoporosis has affected my shoulder joint and is this due to aging or the drug I take against recurrence? Ha! Of course no one really knows. But my MT did say one day, that people of a "certain age" can have shoulder problems like this. Very diplomatic! But other professionals say radiation is the main culprit, the original scar from my lumpectomy has caused the cording, yes it is the drugs I take, nerves were cut during the mastectomy and/or lumpectomy thus the scapula popping out and so on. The good news is that yoga, walking, lots of range of motion exercises and my wonderful massage therapist and physio help and there is nothing dire going on.<br />
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I have been on a waitlist since last May for a revision that may help. My plastic surgeon says he can cut the very hard cords that disappear under the lumpectomy scar though I am aware that more surgery can cause additional scar tissue but hey I think I will give it a go. I have gone from #26 to #19 on the waitlist in the past 6 months so it is not imminent anyway.<br />
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I did have an incisional hernia repair in April which was totally unconnected to cancer and that was successful. I had to kick back with no yoga or exertion for a month but that was OK too. Lots of time for thinking and reading and movies on Netflix. Thanks Andy for that!<br />
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In the last post I referred to my chickens. While I was recuperating from the hernia repair I was witness to our broody hen Laila's instinctual need to be a mother. It made me think back to the beginning of this chicken hobby of mine and it does relate directly to my time of BC treatment though I had never really realized it.<br />
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In the fall of 2012 while I awaiting the pathology from my lumpectomy, Dick found himself a project~~why not build a 5 star chicken coop? Though the family seems to think it was my idea, I have never really believed that. But I am glad. Dick built a masterpiece and nearly broke his back in the process as he fell off while putting on the roof and landed on his drill which hit the ground first. He was badly shaken, grey and bruised and as luck would have it, Karalee Greer who is a physio just happened to be here. She took a look at him and with ibuprofen, an ice pack and instructions to lie down for the rest of the day, I went off to the art gallery as planned with Susan Penner. I called several times to see how he was but no answer. Of course, once we left he went back up on the roof to finish the job!<br />
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Chickens did not appear that fall as chemotherapy followed by all the other nasty treatments and surgery took precedence. However the following summer when Dick was off sailing across the Med and Atlantic, Andy and I picked our first young chicks. Of course I picked a rooster and have done so more than once since they do look more attractive than hens. We did end up with a couple of lovely hens, Eva and Fluffy and though they are no longer with us, my hobby has expanded and looking back to when Dick built that coop, I am grateful for the way it evolved into caring for them and forgetting often about my healing self.<br />
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Laila went broody in March. This is something that happens to a few hens and often it is impossible to break this trance like state that has them sitting on a nest 24/7. I was going away and hoped that she would be broken of her broodiness but it was not to be. Lori, our tenant got her 6 fertilized eggs and on April 15, 5 adorable chicks were born. I was captivated and spent much of my recuperation watching the interaction between mom and chicks. I know a lot more about chickens than I had ever anticipated and can see that I would never have made a good farmer~~just a few chickens can be a lot of work! But thanks to Dick it has been amazing therapy.<br />
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This will not be the end of the story though. Laila went broody again last week and is sitting on 6 more eggs but not at my house. She is with a wonderful family who also took 3 of the chicks. I am off to Tahiti on Tuesday night and broody hens need lots of attention. I do get Laila back though as well as "pick of the brood." We are allowed 4 hens and no roosters in Vancouver and I currently have 4 hens and 2 chicks who look like they will be hens. But we do have a big lot and so far there is lots of room. The good thing too about chickens is that they are dispensable~~either other chicken lovers take them or they can end up in the pot. One of our young roosters did become coq au vin made by Lori and enjoyed by Dick and her. I am not into eating my pets!<br />
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The one thing that I am not doing this year is trekking in Nepal. I am sure I have at least one more trek in me and am contemplating Mustang (Lo Monthang) next May if anyone is interested.<br />
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Much love to everyone who has any sort of cancer or is recovering from or living with someone with cancer or who has a friend or friends with cancer. It is not easy but it is possible to have fun and keep on trekking!<br />
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<br />Marian Leightonhttp://www.blogger.com/profile/12242098056321750009noreply@blogger.com4