I 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.
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.
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.
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.
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.
Enough for tonight but I did want to get an update out.
Love Marian
Wednesday, November 15, 2017
Wednesday, September 13, 2017
Good 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.
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.
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.
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.
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.
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.
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.
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.
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.
Tuesday, September 12, 2017
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Another 3990 meter pass en route to Lo Manthang May, 2017
Saturday, June 18, 2016
Summer 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. https://sailvankedisi.wordpress.com/2016/06/18/french-polynesia/
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.
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.
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.
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.
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.
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!
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.
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!
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.
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.
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!
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.
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!
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.
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.
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.
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.
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.
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!
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.
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!
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.
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.
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!
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.
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!
Saturday, March 12, 2016
2016 AND LIFE IS GOOD!
So far this year I have been trying to keep up with the Van Kedisi blog. Many of you know that my husband Dick sailed from Bodrum, Turkey to the Barbados with different crew in 2013 when I was recovering from all the breast cancer treatments and surgeries. This year he has been heading west since January 29 from Curacou to the Panama Canal with friends. I am actually checking a web cam that supposedly shows them transmitting but the resolution is not big but I will keep checking as I write. That blog link is: https://sailvankedisi.wordpress.com/author/sailvankedisi/
The crew is changing with the friends who did the first leg departing tomorrow and the new crew, already on board heading across the Pacific.
On to my own blog~~I have not written since October but I would like to explain why I am not crossing the Pacific myself on Van Kedisi. Breast cancer can, even three years post mastectomy and chemotherapy (radiation ended in June, 2013) can still present challenges. Since diagnosis, I have made decisions about open ocean sailing for myself based on BC. Perhaps if I had started out with Dick from Turkey in the spring of 2013, I would have appreciated a different adventurous challenge. Since that was impossible at the time and there has been ongoing treatment and the medical protocols that go along with my type of cancer, it is not as if I can just take off. No doubt I could have planned my medical schedule to cross the Caribbean but somehow I felt I wanted to be on terra firma at least for now. One of my good friends and I plan to fly to Tahiti in June to spend a couple of weeks on VK and I know there is still an option to sail from Fiji to New Zealand. Our son Steven plans to sail from Tahiti to NZ and our other two kids have already done legs~~Mary from Mallorca to the Canary Islands and Andy crossed the Atlantic.
As it has turned out, I have appreciated the opportunity to be on my own and in fact have found it really satisfying in many ways. It has been a very long time since I have had so much time to do what I want whenever I want to and to spend time with old friends and some new ones too. It has given me time to journal and explore not just each day as it comes along but to think about my life in the past, present and future. I was surprised to find how liberating that has been and continues to be.
Having the opportunity last summer to do the 7 week "one on one" Mindfulness Based Cognitive Therapy course at the cancer agency gave me new tools to work with. I learned that I do not have to erase sad or anxiety driven thoughts from the past but I can relegate them to the past when they come into my mind. They do not define who I am now. This liberation has made me much more aware of how much sadness but also joy there is in the world and we can choose to view events in our life differently if we want to. Reaching out to others is healthy and beneficial for me but also for others I interact with allowing a greater appreciation of both people I already know but also for strangers I approach say at yoga, or on the bus or while walking down a main street.
I am feeling positive even though the drugs I take to keep recurrence at bay have those pesky side effects I have referred to before. The cording in my axilla area persisted and by December there was a new one, large and tight, along with the other twinned ones. I sent a plea for advice to my medical oncologist and got a referral back to my breast surgeon who I saw in early January. She thought it was likely a capsular contracture of the breast implant. I made an appt. to see my plastic surgeon but there was a two month wait. Meanwhile I also sent out emails for advice and was lucky to get an appt. with a registered massage therapist who specializes in post breast cancer treatment as well as pre and post natal women and her practice is in a midwifery center so always pleasant to visit. I was fortunate that she took me and then only because one of my BC buddies told her what it looked like. I have now seen her 4 times in the past two months and it is like a miracle. With myofascial release the big one has disappeared and the other two are softening.
While at my late fall medical oncology appt., I mentioned that I was having a lot of pain in my low back area. The bone density test from the summer showed further osteopenia but she wanted a bone scan done to rule out metastases. The one thing about having had cancer is that often we are booked sooner than later and I had the results just before the NY. The results were good in that no further cancer but the degeneration and osteoarthritis looked worse. I saw an endocrinologist who specializes in bone disease in January and they do their own bone density test. It was a very thorough visit and the end result was a decision to start on yet another drug called Prolia or Denosumab which is given subcutaneously twice a year. It is a monoclonal antibody and will not go into detail but suffice it to say that it should help the bone loss caused by Anastrozole, the drug I take against recurrence and which blocks estrogen, thus the osteoarthritis. The best news is that at the San Antonio breast cancer conference in December of 2015, a 5 year study shows that this drug may in fact also protect us against recurrence. Time will tell.
As always, exercise is the best remedy for everything, at least in my estimation. It also creates those endorphins to make us feel better! Yoga also works and so I feel good, take the meds knowing that they do have side effects but also may just protect me from much worse.
I am off to the Netherlands in a week for a 10 day holiday. It is hard to believe, but I will be meeting up with 6 friends from our Aramco days, all British though one lives in Delft. I will not see them all at once but some in Amsterdam and some in Delft. I had KLM points to burn and though most people are heading for the sun, I am excited to see the Netherlands in early spring~~daffodils, tulips and old friends~~what could be better! Life really is good andI look forward to more of 2016. I feel fortunate, that is for sure.
Lori, who lives in our basement suite, reminded me that I did not mention our chickens. I now have 5 young hens and as of last week, all are laying. Dick built their 5 star coop just before I started chemotherapy in the fall of 2012 and though we did not actually get chickens until the next summer. Andy and I chose badly and we got a few roosters. But we ended up with two hens back then. One of them now lives with Dick's wine kit shop owner, Cheryl and the other died. Last summer though the idea of having more birds became a reality and though we again had a few rooster issues I am happily the "mom" of 5 different breeds of chicken. It has become a bit of a passion for me and I have books, belong to a couple of Internet chicken groups like "Canadian Mother Cluckers" and am constantly amazed by the behaviour of our flock. They each have an individual personality and that old adage of the pecking order could not truer! Next up may be bee keeping as it looks as though a master bee keeper thinks I may be serious enough to teach.
I believe that the passion for learning about and keeping chickens and perhaps bees later this year, is something that not only interests me but allows me to learn quite easily, not always the case with the effects of memory and attention loss after chemotherapy.
One more thing~~my concerns about climate change have not waned and as I get older and know there is no knowing about the future I am no longer hesitant about what I will do to protest pipelines in British Columbia~~it will be over my dead body.
The crew is changing with the friends who did the first leg departing tomorrow and the new crew, already on board heading across the Pacific.
On to my own blog~~I have not written since October but I would like to explain why I am not crossing the Pacific myself on Van Kedisi. Breast cancer can, even three years post mastectomy and chemotherapy (radiation ended in June, 2013) can still present challenges. Since diagnosis, I have made decisions about open ocean sailing for myself based on BC. Perhaps if I had started out with Dick from Turkey in the spring of 2013, I would have appreciated a different adventurous challenge. Since that was impossible at the time and there has been ongoing treatment and the medical protocols that go along with my type of cancer, it is not as if I can just take off. No doubt I could have planned my medical schedule to cross the Caribbean but somehow I felt I wanted to be on terra firma at least for now. One of my good friends and I plan to fly to Tahiti in June to spend a couple of weeks on VK and I know there is still an option to sail from Fiji to New Zealand. Our son Steven plans to sail from Tahiti to NZ and our other two kids have already done legs~~Mary from Mallorca to the Canary Islands and Andy crossed the Atlantic.
As it has turned out, I have appreciated the opportunity to be on my own and in fact have found it really satisfying in many ways. It has been a very long time since I have had so much time to do what I want whenever I want to and to spend time with old friends and some new ones too. It has given me time to journal and explore not just each day as it comes along but to think about my life in the past, present and future. I was surprised to find how liberating that has been and continues to be.
Having the opportunity last summer to do the 7 week "one on one" Mindfulness Based Cognitive Therapy course at the cancer agency gave me new tools to work with. I learned that I do not have to erase sad or anxiety driven thoughts from the past but I can relegate them to the past when they come into my mind. They do not define who I am now. This liberation has made me much more aware of how much sadness but also joy there is in the world and we can choose to view events in our life differently if we want to. Reaching out to others is healthy and beneficial for me but also for others I interact with allowing a greater appreciation of both people I already know but also for strangers I approach say at yoga, or on the bus or while walking down a main street.
I am feeling positive even though the drugs I take to keep recurrence at bay have those pesky side effects I have referred to before. The cording in my axilla area persisted and by December there was a new one, large and tight, along with the other twinned ones. I sent a plea for advice to my medical oncologist and got a referral back to my breast surgeon who I saw in early January. She thought it was likely a capsular contracture of the breast implant. I made an appt. to see my plastic surgeon but there was a two month wait. Meanwhile I also sent out emails for advice and was lucky to get an appt. with a registered massage therapist who specializes in post breast cancer treatment as well as pre and post natal women and her practice is in a midwifery center so always pleasant to visit. I was fortunate that she took me and then only because one of my BC buddies told her what it looked like. I have now seen her 4 times in the past two months and it is like a miracle. With myofascial release the big one has disappeared and the other two are softening.
While at my late fall medical oncology appt., I mentioned that I was having a lot of pain in my low back area. The bone density test from the summer showed further osteopenia but she wanted a bone scan done to rule out metastases. The one thing about having had cancer is that often we are booked sooner than later and I had the results just before the NY. The results were good in that no further cancer but the degeneration and osteoarthritis looked worse. I saw an endocrinologist who specializes in bone disease in January and they do their own bone density test. It was a very thorough visit and the end result was a decision to start on yet another drug called Prolia or Denosumab which is given subcutaneously twice a year. It is a monoclonal antibody and will not go into detail but suffice it to say that it should help the bone loss caused by Anastrozole, the drug I take against recurrence and which blocks estrogen, thus the osteoarthritis. The best news is that at the San Antonio breast cancer conference in December of 2015, a 5 year study shows that this drug may in fact also protect us against recurrence. Time will tell.
As always, exercise is the best remedy for everything, at least in my estimation. It also creates those endorphins to make us feel better! Yoga also works and so I feel good, take the meds knowing that they do have side effects but also may just protect me from much worse.
I am off to the Netherlands in a week for a 10 day holiday. It is hard to believe, but I will be meeting up with 6 friends from our Aramco days, all British though one lives in Delft. I will not see them all at once but some in Amsterdam and some in Delft. I had KLM points to burn and though most people are heading for the sun, I am excited to see the Netherlands in early spring~~daffodils, tulips and old friends~~what could be better! Life really is good andI look forward to more of 2016. I feel fortunate, that is for sure.
Lori, who lives in our basement suite, reminded me that I did not mention our chickens. I now have 5 young hens and as of last week, all are laying. Dick built their 5 star coop just before I started chemotherapy in the fall of 2012 and though we did not actually get chickens until the next summer. Andy and I chose badly and we got a few roosters. But we ended up with two hens back then. One of them now lives with Dick's wine kit shop owner, Cheryl and the other died. Last summer though the idea of having more birds became a reality and though we again had a few rooster issues I am happily the "mom" of 5 different breeds of chicken. It has become a bit of a passion for me and I have books, belong to a couple of Internet chicken groups like "Canadian Mother Cluckers" and am constantly amazed by the behaviour of our flock. They each have an individual personality and that old adage of the pecking order could not truer! Next up may be bee keeping as it looks as though a master bee keeper thinks I may be serious enough to teach.
I believe that the passion for learning about and keeping chickens and perhaps bees later this year, is something that not only interests me but allows me to learn quite easily, not always the case with the effects of memory and attention loss after chemotherapy.
One more thing~~my concerns about climate change have not waned and as I get older and know there is no knowing about the future I am no longer hesitant about what I will do to protest pipelines in British Columbia~~it will be over my dead body.
Academy awards night~~can you imagine this as the Danish girl, played by Eddie Redmayne?
Blue, so named for her blue eggs and head of the pecking order
Charlie, next in the pecking order and up on our deck for a visit
Charlie, next in the pecking order and up on our deck for a visit
Last week, the first day we had all 5 hens laying
Saturday, October 17, 2015
Three years later....
In reading my last post just now I was glad to see it had not been as long ago as I had thought. It was good to go back and read the posts from last year. It makes me appreciate the fact that I have been able to carry on with my active life. The third anniversary of my breast cancer was last week and while it seems long ago, the reminders are still with me.
I read my journal posts from the past year before starting this post, in part because my memory is not always as accurate as it used to be. I continue to blame much of this on chemotherapy since I just do not believe it simply aging. But it was good to refresh my mind and I am glad that I continue to keep journals, even though there is the odd lapse. One of the issues I have noticed is that there have been continuing issues of depression and anxiety. More on that later.
I did return to Nepal last fall for yet another Annapurna trek. It was a small but diverse group and though we were fortunate to have a clear day for our sunrise hike to Annapurna Base Camp, most days ended by early afternoon in rain, hail, thunder and lightning. On our descent nearing the end, we experienced torrential rain and wind that had started the afternoon before. It was not until we arrived in Pokhara that we heard that the storm which came across the Bay of Bengal, had been far worse further east and higher up. Many Nepalis and trekkers died in that storm and again we witnessed the changing weather patterns of the world. Soon after our March Nepal trip also in 2014, 16 Sherpas died on Mt. Everest. Both disasters were in seasons that in the past were considered the best for trekking and climbing. I digress, but it seems to me that it is becoming harder to deny that climate change is upon us throughout the world and we will see much worse if we do not recognize and together make some hard decisions.
Oct. 17, 2015
One week after returning from one of the most challenging treks since the Everest Base Camp trek in 2008, I have been reflecting on how far I have come since my breast cancer diagnosis just over 3 years ago. I never finished the blog post above and considered this morning on deleting it. However it does seem relevant and so will carry on today and hope to actually finish this post many months after the last epistle.
First, though I know "winter is coming" and often depression can be exacerbated by short days and long nights (nights have often been very dark for me) I feel better equipped to handle it. I reference depression and anxiety above and acknowledged that in June when I reached out for help initially with my medical oncologist at my bi annual meeting with her. I still see her twice a year because I continue to take Anastrozole, an aromatase inhibitor that remains the biggest "gun" against a recurrence. This drug has many side effects but the reality is that I have no choice but to take it for at least 5 years. Sure, there is always choice but since my tumour was strongly fed by estrogen, the AI as it is called, inhibits the uptake of estrogen and I do not want to look back and see that I chose not to use the only real tool against recurrence.
Possible side effects of Anastrozole include osteoporosis, muscle pain and weakness and the list goes on. It did not occur to me that my depression and anxiety could also be connected to this drug but I feel that there is a distinct possibility. By acknowledging my concerns in June, I did receive help and with a one to one MBCT course (mindfulness based cognitive therapy), very similar to the MBSR course I did in a group setting back in the spring of 2013, I was able to slow down and practice mindfulness yet again. With advice from the wonderful psychiatrist I saw back in 2013 and then again this summer, I also added a new medication to my arsenal. I join the many voices who speak out about depression and anxiety whether it be situational or chronic and am thankful that I sought help.
By the time we left for Nepal/Bhutan and India in mid September, I felt a renewed balance in my life. While away leading the very challenging trek in Bhutan followed by a tour in India I was so busy that I had little time to consider how I really felt. What I did know was that again, despite inclement weather in remote high altitude trekking, I felt good. I love being in the mountains and though I do not plan to trek in Bhutan again, I know that with my good buddy and colleague Razzu Tuladhar (owner of samsarajourneys.com) who I have now been working with for nearly 12 years, I will still be trekking in Nepal in the near future. With the knowledge that I have introduced so many people to trekking in the Himalaya, all of whom have realized new potential, I am grateful that I have had these opportunities. It also allows me to inspire many breast cancer sisters to reach beyond what they think they can do.
In closing this long post it saddens me to add that I lost more friends in this past year to breast cancer. Other friends lost close friends and family members to both breast cancer and other cancers. None of us is immortal and trite as it sounds, it continues to be important to value what time we have on the planet. Here in Canada, where a long election ends on Monday, I and many others hope for change. I referenced climate change earlier and no matter what the outcome on Monday, I know that I need to engage further in making a difference not just for our next generation in Canada but for everyone across the world.
I read my journal posts from the past year before starting this post, in part because my memory is not always as accurate as it used to be. I continue to blame much of this on chemotherapy since I just do not believe it simply aging. But it was good to refresh my mind and I am glad that I continue to keep journals, even though there is the odd lapse. One of the issues I have noticed is that there have been continuing issues of depression and anxiety. More on that later.
I did return to Nepal last fall for yet another Annapurna trek. It was a small but diverse group and though we were fortunate to have a clear day for our sunrise hike to Annapurna Base Camp, most days ended by early afternoon in rain, hail, thunder and lightning. On our descent nearing the end, we experienced torrential rain and wind that had started the afternoon before. It was not until we arrived in Pokhara that we heard that the storm which came across the Bay of Bengal, had been far worse further east and higher up. Many Nepalis and trekkers died in that storm and again we witnessed the changing weather patterns of the world. Soon after our March Nepal trip also in 2014, 16 Sherpas died on Mt. Everest. Both disasters were in seasons that in the past were considered the best for trekking and climbing. I digress, but it seems to me that it is becoming harder to deny that climate change is upon us throughout the world and we will see much worse if we do not recognize and together make some hard decisions.
Oct. 17, 2015
One week after returning from one of the most challenging treks since the Everest Base Camp trek in 2008, I have been reflecting on how far I have come since my breast cancer diagnosis just over 3 years ago. I never finished the blog post above and considered this morning on deleting it. However it does seem relevant and so will carry on today and hope to actually finish this post many months after the last epistle.
First, though I know "winter is coming" and often depression can be exacerbated by short days and long nights (nights have often been very dark for me) I feel better equipped to handle it. I reference depression and anxiety above and acknowledged that in June when I reached out for help initially with my medical oncologist at my bi annual meeting with her. I still see her twice a year because I continue to take Anastrozole, an aromatase inhibitor that remains the biggest "gun" against a recurrence. This drug has many side effects but the reality is that I have no choice but to take it for at least 5 years. Sure, there is always choice but since my tumour was strongly fed by estrogen, the AI as it is called, inhibits the uptake of estrogen and I do not want to look back and see that I chose not to use the only real tool against recurrence.
Possible side effects of Anastrozole include osteoporosis, muscle pain and weakness and the list goes on. It did not occur to me that my depression and anxiety could also be connected to this drug but I feel that there is a distinct possibility. By acknowledging my concerns in June, I did receive help and with a one to one MBCT course (mindfulness based cognitive therapy), very similar to the MBSR course I did in a group setting back in the spring of 2013, I was able to slow down and practice mindfulness yet again. With advice from the wonderful psychiatrist I saw back in 2013 and then again this summer, I also added a new medication to my arsenal. I join the many voices who speak out about depression and anxiety whether it be situational or chronic and am thankful that I sought help.
By the time we left for Nepal/Bhutan and India in mid September, I felt a renewed balance in my life. While away leading the very challenging trek in Bhutan followed by a tour in India I was so busy that I had little time to consider how I really felt. What I did know was that again, despite inclement weather in remote high altitude trekking, I felt good. I love being in the mountains and though I do not plan to trek in Bhutan again, I know that with my good buddy and colleague Razzu Tuladhar (owner of samsarajourneys.com) who I have now been working with for nearly 12 years, I will still be trekking in Nepal in the near future. With the knowledge that I have introduced so many people to trekking in the Himalaya, all of whom have realized new potential, I am grateful that I have had these opportunities. It also allows me to inspire many breast cancer sisters to reach beyond what they think they can do.
In closing this long post it saddens me to add that I lost more friends in this past year to breast cancer. Other friends lost close friends and family members to both breast cancer and other cancers. None of us is immortal and trite as it sounds, it continues to be important to value what time we have on the planet. Here in Canada, where a long election ends on Monday, I and many others hope for change. I referenced climate change earlier and no matter what the outcome on Monday, I know that I need to engage further in making a difference not just for our next generation in Canada but for everyone across the world.
Dick and me just below Takshang Monastery, also know as Tiger's Nest.
Our amazing group the last morning~~what a team we were!
Me at yet another pass~~probably 4100+ meters high.
Our amazing horses and mules who carried everything needed for the trek.
My colleague and good friend Razzu at Dochula Pass, Bhutan.
Sunday, August 24, 2014
Two years later....
It has been several months since I last wrote a blog entry. I have continued to write what I consider to be boring entries in my personal journal just to be able to look back and try and make sense of what I have felt over time. There seems to be a sense for most people on the outside that once active treatment and surgeries are over, that life will get back on track as it was before. Of course I am couple of years older but I look normal and for all intents and purposes, cancer is over for me or there is "no evidence of disease." There is no sure way of knowing what is really happening so that is the best answer we breast cancer warriors (I dislike the word survivor) get.
After I returned from my travels in Nepal and Turkey I spent a long weekend in Montana at a Big Sky Yoga Retreat which I mentioned in another blog. David Greer nominated me for this retreat and I joined 7 other women in various stages of life after breast cancer treatment for yoga, horses, awesome food and wine and much more. We talked a lot too as only women can, especially those who have shared so much. I felt blessed to have been a part of that adventure and many wonderful and selfless people rallied round to make it happen for us in a most amazing setting.
http://www.bigskyyogaretreats.com/cowgirlcancer.html
Dick picked me up after the retreat and we had a fun time camping through Montana into Alberta and spent time with good friends in Calgary and Edmonton. We camped our last night before home in Marble Canyon along the Lillooet Whistler highway. Beautiful!
That was back in early June and now the summer is slowly turning to fall. It has been a spectacular summer weather-wise for us in BC. One might think that those months now past would have led me to say how lucky and blessed I am to have had these wonderful opportunities not to mention that fact that here I am alive and seemingly well. I did in fact feel that way as I trained for my second short course triathlon in July. Mary and Andy both did it with me July 27, the exact date and second anniversary of my diagnosis and it was a success~~no falling off my bike this year and with the kids encouraging me throughout the course it was actually kind of fun.
But something about that two year anniversary date and the appointments at the cancer agency with my medical oncologist~~six month check up plus other followups for my throat lump and CT for the lung nodule triggered another downward spiral. Waking up on a sunny day feeling nothing but blackness triggers guilty feelings because I can't really articulate any good reasons for feeling so down. Then I subject Dick and the kids to my negative behaviour and on it goes. I know I am not alone as my breast cancer buddies all chime in as their anniversaries coincide. I read my journal entries looking for answers~~is there a pattern? I know from past experiences in recent times that suddenly the grey filmy veil of unhappiness lifts but what I don't really know is why. I am hopeful that by reading what I have written in the past weeks along with writing this blog post today, I will again feel inspired to challenge myself to do things that I know will make work towards the glass half full person I want to be again.
I head to Nepal in late September for yet another Annapurna trek with a new group and the training for that do create those endorphins which certainly help with feelings of well being. We hiked to Garibaldi Lake on Thursday with my seniors' hiking group~~18 k return with 1000 meters of elevation gain and though my quads and hips complained the past couple of days it made me realize that I am so happy in the mountains. If anyone wants to join us, there is still room!
http://samsarajourneys.com/trips.php?trip=52
After I returned from my travels in Nepal and Turkey I spent a long weekend in Montana at a Big Sky Yoga Retreat which I mentioned in another blog. David Greer nominated me for this retreat and I joined 7 other women in various stages of life after breast cancer treatment for yoga, horses, awesome food and wine and much more. We talked a lot too as only women can, especially those who have shared so much. I felt blessed to have been a part of that adventure and many wonderful and selfless people rallied round to make it happen for us in a most amazing setting.
http://www.bigskyyogaretreats.com/cowgirlcancer.html
Big Sky Yoga Retreat~~June, 2014
Dick picked me up after the retreat and we had a fun time camping through Montana into Alberta and spent time with good friends in Calgary and Edmonton. We camped our last night before home in Marble Canyon along the Lillooet Whistler highway. Beautiful!
Marble Canyon, BC
That was back in early June and now the summer is slowly turning to fall. It has been a spectacular summer weather-wise for us in BC. One might think that those months now past would have led me to say how lucky and blessed I am to have had these wonderful opportunities not to mention that fact that here I am alive and seemingly well. I did in fact feel that way as I trained for my second short course triathlon in July. Mary and Andy both did it with me July 27, the exact date and second anniversary of my diagnosis and it was a success~~no falling off my bike this year and with the kids encouraging me throughout the course it was actually kind of fun.
But something about that two year anniversary date and the appointments at the cancer agency with my medical oncologist~~six month check up plus other followups for my throat lump and CT for the lung nodule triggered another downward spiral. Waking up on a sunny day feeling nothing but blackness triggers guilty feelings because I can't really articulate any good reasons for feeling so down. Then I subject Dick and the kids to my negative behaviour and on it goes. I know I am not alone as my breast cancer buddies all chime in as their anniversaries coincide. I read my journal entries looking for answers~~is there a pattern? I know from past experiences in recent times that suddenly the grey filmy veil of unhappiness lifts but what I don't really know is why. I am hopeful that by reading what I have written in the past weeks along with writing this blog post today, I will again feel inspired to challenge myself to do things that I know will make work towards the glass half full person I want to be again.
I head to Nepal in late September for yet another Annapurna trek with a new group and the training for that do create those endorphins which certainly help with feelings of well being. We hiked to Garibaldi Lake on Thursday with my seniors' hiking group~~18 k return with 1000 meters of elevation gain and though my quads and hips complained the past couple of days it made me realize that I am so happy in the mountains. If anyone wants to join us, there is still room!
http://samsarajourneys.com/trips.php?trip=52
Garibaldi Lake near Whistler, BC on August 21, 2014
Lunch with family and a friend on Friday
So after writing this entry and adding these photos I know I needed to write in my blog again. How important family and friends are and life no matter its ups and downs has just reaffirmed just how blessed I am. I suspect I may be heading back to "glass half full."
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