At this time last year we had just done the CIBC 5 k Run For the Cure with family and friends and I was waiting for my first appointment at the BC Cancer Agency. Now a year later I am trying to move forward to a more normal life. It was not the fun summer I had anticipated when I completed the 6 week course of radiation in June. Rather, it felt like one step forward, two steps back. But now that fall is in full swing and Vancouver's monsoon season is upon us, I am feeling hopeful again.
Las Vegas was great. Spending a long weekend with 14 other women who have faced this past year with breast cancer was strangely liberating. It allowed us all to immerse ourselves in the sharing of our breast cancer stories without reservation. Age seemed no barrier and though the youngest was only 29 and the oldest (me) 64 our common bonds created instant friendship. Considering the main topic was in fact breast cancer, one might surmise that it could have been rather sad or even scary. But in fact, the weekend was entirely positive and I came away with a real desire to move forward.
I even had my first haircut in 14 months, just before flying off to Vegas. I don't count the head shaving of just under a year ago to count. So I look normal and now need to work at feeling normal. I hope to start a course at the cancer agency next week for memory and attention training post chemo. It is hard to say whether chemo has had an effect on my brain but when I went to an Apple appointment last Friday a week early, I called and signed up.
I did not finish this post but rather than start over I will just add to it. It is Thanksgiving weekend and as thanks are being given across Canada I know that I am fortunate. I am feeling a little sad today as I miss our family being together. Steven is here for the weekend though and with Andy we will celebrate together. Mary and Dick are together in Rabat, Morocco on Van Kedisi and I just got to talk to them both, and even with a bit of static it was so good. Mary was sick and I was worried; being a mom never changes even when there is little I can do from thousands of miles ago. She is better and I can relax!
I now have a surgical date and that was a huge relief. December 6th I will have my tissue expander replaced with an implant. Something called fat grafting will also be done I gather to make the new "breast" look more normal. I will also have what is called augmentation on the other side to try to match the new one. This will be done in a Surgical Ambulatory Clinic which our medical system has contracted to. I feel as though this surgery will for the most part, end a year and a half of craziness. Three surgeries, 4 months of chemotherapy, 6 weeks of intense radiation and a few scares I think legitimately can be called crazy. For at least 5 years I will take an aromatase inhibitor, Anastrozole which is supposed to ward off recurrence. The AI's as these drugs are called, inhibit estrogen so there are side effects, some of which are unclear so I don't really know if osteoporosis, the worst side effect, is occurring. But I know it is my biggest gun so I take it faithfully every morning.
My thyroid nodules are benign but I still have big lumps which I have to swallow over~~kind of like having a bad cold all the time. I see an endocrinologist in November and I guess if they continue to grow, at some point I will also see a head and neck specialist but no point in dwelling on that now. My plastic surgeon says the lump on my breast is just a stitch. My head pain associated with neck movement continues and I can only hope that with physio, acupuncture and energy healing along with yoga, walking and exercises, it will dissipate. I did start the Memory and Attention Adaptation Training course at the cancer agency. This course was developed by doctors in the US and for us, it is a pilot project funded by the Lance Armstrong Foundation. Thanks Lance!
It is actually hard to understate the effects of chemotherapy. I do not doubt that it saved my life and I am lucky only to have lingering effects like numb toes, eyelashes still falling out and memory issues. Dr. Susan Love said recently that neuropathy (numb toes are due to neuropathy) is a small price to pay for still being alive. She is right.
On to Thanksgiving dinner preparations~~there is much to be thankful for.
Sunday, October 13, 2013
Monday, September 9, 2013
Good news~~sort of....
As I have now had a few more procedures in the past week I thought I would share the tentative results. I had an ultrasound last Thursday for the breast lump. I got a call on Friday from the Rapid access Breast Clinic saying the radiologist wanted it redone to have a look himself. Luckily he agreed to book that for right after my thyroid biopsy today. Both procedures are now done with the biopsy of the two thyroid nodules much more invasive. He said I have a small thyroid and it took two goes to get enough material for pathology from the one on the left~~he said the carotid artery is close. The second nodule is near an artery that goes to the brain. Well I am here to tell the tale so all went well and it will be about a week for pathology results though the radiologist seemed to think nothing bad will come of it. He then did the breast ultrasound and says to come back in 6 months. I was not too happy with that but he said he would biopsy it if I wanted but there would be a chance of infection and no way I need that possibility right now with the tissue expander still in. BTW, he thought it was an implant and was impressed by how good it looks. I see my plastic surgeon on the 18th and will ask him what he thinks about the lump.
So now it is up to me to relax and get back on the road to recovery. It has gone backwards in my estimation with all the tightening of the surgical site due to more scar tissue from radiation but I guess that is how it is. More stretching, yoga, walking and physio and I will hope for the best.
I am off to Las Vegas Friday to spend a long weekend in a huge mansion (VRBO) complete with pool and waterside and lovely outdoor and indoor areas. I am meeting 15 virtual friends from the breast cancer site I have been part of since diagnosis. We have all gone through very similar treatments over the same time period and now we will move from virtual to reality! For me and I suspect all of us, this is a much needed break and chance to share our stories. It will be 100F most days and I suspect will remind me of Saudi Arabia.
There is one more piece of good news~~my Nepal trek/tour is full! It is very exciting for me to have that to look forward to and honestly no matter what happens I will be there!
Thursday, August 29, 2013
More waiting games....
My old friend insomnia seems to have returned for a visit so I am again writing in the very early morning hours. I just read my last post and noted that I blamed stress for my neck and head issues. I am not so sure that is the case but I do see how easy it is to fault myself when in fact it may just be all that my body has gone through. In a report written in July after I saw my radiation oncologist for the last time, he chalked up my head pain to tension headaches so I guess I inferred that my stress caused the head pain. But two weeks ago, when I could barely move my neck without pain in my head, I went to urgent care at UBC. X-rays showed nothing so a CT scan of my head and neck was ordered. The good news is that there is no arthritis, disc problems or metastases. Incidentally as they say, nodules were seen on my thyroid and an ultrasound was recommended.
Friday morning I saw Paolo my amazing physio for the first time in a month~~he had been on holiday~~and his initial assessment is that my right side has really tightened up and it would appear that radiation really did a number on the whole surgical area. This may be the cause of the neck/head pain. He also had a look at my left arm/shoulder injury from the fall off my bike. Some tendonitis and bursitis with rotator cuff involvement but it should heal fine. He suggested lots of walking, stretching and yoga and he will be working on both sides in the coming weeks.
Friday afternoon I had the thyroid ultrasound at Mt. St. Joseph Hospital and really did not think much more about it over the weekend since the little I read about thyroid nodules said that they are common and for the most part, are benign. Then on Sunday I noticed a small pea shaped lump on my mastectomy/tissue expander side, right below the scar. That was more unsettling but I did try to tell myself that it is most likely just scar tissue and besides how could cancer reappear when I just finished radiation in June?
No doubt my thyroid will be fine and the lump nothing to write home about but let me just say that the old fears from last summer's waiting games have resurfaced. Because I was discharged by my breast surgeon from the Rapid Access Breast Clinic at MSJH in June, I had to start over Monday at my GP's office with a new referral to have the lump looked at. I had just got home from that visit when my GP called to say that she had received the ultrasound report and two of the thyroid nodules were bigger than 1 cm so need to be biopsied. By this afternoon, an appointment for the biopsy had been booked for Sept. 9 and an ultrasound for the lump will be done Sept. 6.
I also had a suspicious looking mole removed from my back today though I am sure that will prove to be nothing. But I do feel as though I have still not escaped the never ending rounds of appointments and September does not look much better. Dick's Mediterranean adventure is going well and he and his crew Dean and Marie are currently in northern Sardinia. I decided some time ago that September was too soon for me to consider joining them and am relieved now that I made that decision.
http://sailvankedisi.wordpress.com/author/sailvankedisi/ for anyone who in interested in that adventure. Regardless of what is happening here, I am so happy that he is living his dream right now.
Now Thursday afternoon and the fall monsoons seem to have started early. I picked up our two chickens who had spent a few days back at their old home while one was treated for an eye infection that seemed to have come from the flock there. I had been treating her myself but when the flock was to be treated with oral antibiotics we decided to spare me a few days from my new job as chicken opthamology nurse. Her eye is better and they seem happy to be back in their deluxe coop. Our middle child Steven is packing our car to move back to Victoria with his girlfriend to do one last term at UVic to complete his degree. Andy is taking them so a whole night to myself!
I wish I could say that I feel as though I am on the road to recovery but it is not so. Still, as always I know I am lucky to be alive and with nothing life threatening. I am rethinking the CIBC Run for the Cure October 6th. I had thought I would be cruising the Med by then but that is looking doubtful. The fact that only about 15% goes to actual breast cancer research etc. frustrates me but I suppose that even 15% is a good thing and it is an amazing event. We still have our Ne-Pal t-shirts from last year too.
Now Thursday afternoon and the fall monsoons seem to have started early. I picked up our two chickens who had spent a few days back at their old home while one was treated for an eye infection that seemed to have come from the flock there. I had been treating her myself but when the flock was to be treated with oral antibiotics we decided to spare me a few days from my new job as chicken opthamology nurse. Her eye is better and they seem happy to be back in their deluxe coop. Our middle child Steven is packing our car to move back to Victoria with his girlfriend to do one last term at UVic to complete his degree. Andy is taking them so a whole night to myself!
I wish I could say that I feel as though I am on the road to recovery but it is not so. Still, as always I know I am lucky to be alive and with nothing life threatening. I am rethinking the CIBC Run for the Cure October 6th. I had thought I would be cruising the Med by then but that is looking doubtful. The fact that only about 15% goes to actual breast cancer research etc. frustrates me but I suppose that even 15% is a good thing and it is an amazing event. We still have our Ne-Pal t-shirts from last year too.
Fluffy and Fatty, named after a couple of goldfish the kids rescued when they were little from a pond on the golf course in Dhahran, Saudi Arabia. Fluffy is the light coloured one and Fatty may yet turn out to be a rooster.
Friday, August 9, 2013
Recovery...
The summer is flying by and it has been almost two weeks since the last post on my Cancerversary. I am amazed yet again how much stress built up while I honestly did not realize it was happening. I thought that initially my shoulders were sore from positions held in a yoga class one night awhile ago. But then my head hurt on almost any movement. I knew it was not a brain metastasis (yes, these thoughts do go through my head) but I was unable to make it disappear.
I did do the short course triathlon July 28 with Andy. Karalee decided to do it in her own time which is much faster than mine. I was definitely nervous but the swim in the 50 meter UBC pool went well and the water was warm. Andy cheered me on at each turn and apparently did dolphin dives behind me as it was pretty slow for him. The bike section was going great until I lost concentration for a second and went down on the road. Andy checked out the bikes and just like those guys on "The Tour," I got back up and carried on. Adrenaline is a wonderful thing as we did the 5 k run/walk part in better than usual time. I did do some damage to my left arm/shoulder~~thank goodness I fell on my left side, not my breast surgery side~~but I am getting physiotherapy and look forward to the next triathlon. It was so worth doing!
I went off to Bowen Island the day after the triathlon for a few days in a rented cabin on the water~~totally private and with a fabulous view. Mary came over for the last couple of days and we even climbed Mt. Gardiner with a friend; 800 meters of elevation gain and about 10.5 kilometres. We also hiked around Killarney Lake but much of the time I did try to relax. I did not sleep well though and am well aware that I still like to be close to home right now. Andy and I went to Vancouver Island last weekend so he could do a competitive triathlon at Elk Lake. It was fun to be up close to such an event and cemented my desire to do more short course triathlons myself.
But back home, my head hurt more and I felt exhausted again. It was painful to even move my head a tiny bit. Luckily the two physio appointments I have had this week have provided some relief and now I just have to figure out how to control the stress that has built up.
Blood work done recently for a baseline show some abnormal results and it brings home again the fact that I am still recovering from chemotherapy, surgeries and radiation. Much as I would like to think that I am back to "normal," it will take time and patience. My newest injury from the bike fall has made me realize that I need to be patient and in time, I will feel more like my old self.
I did do the short course triathlon July 28 with Andy. Karalee decided to do it in her own time which is much faster than mine. I was definitely nervous but the swim in the 50 meter UBC pool went well and the water was warm. Andy cheered me on at each turn and apparently did dolphin dives behind me as it was pretty slow for him. The bike section was going great until I lost concentration for a second and went down on the road. Andy checked out the bikes and just like those guys on "The Tour," I got back up and carried on. Adrenaline is a wonderful thing as we did the 5 k run/walk part in better than usual time. I did do some damage to my left arm/shoulder~~thank goodness I fell on my left side, not my breast surgery side~~but I am getting physiotherapy and look forward to the next triathlon. It was so worth doing!
I went off to Bowen Island the day after the triathlon for a few days in a rented cabin on the water~~totally private and with a fabulous view. Mary came over for the last couple of days and we even climbed Mt. Gardiner with a friend; 800 meters of elevation gain and about 10.5 kilometres. We also hiked around Killarney Lake but much of the time I did try to relax. I did not sleep well though and am well aware that I still like to be close to home right now. Andy and I went to Vancouver Island last weekend so he could do a competitive triathlon at Elk Lake. It was fun to be up close to such an event and cemented my desire to do more short course triathlons myself.
But back home, my head hurt more and I felt exhausted again. It was painful to even move my head a tiny bit. Luckily the two physio appointments I have had this week have provided some relief and now I just have to figure out how to control the stress that has built up.
Blood work done recently for a baseline show some abnormal results and it brings home again the fact that I am still recovering from chemotherapy, surgeries and radiation. Much as I would like to think that I am back to "normal," it will take time and patience. My newest injury from the bike fall has made me realize that I need to be patient and in time, I will feel more like my old self.
Saturday, July 27, 2013
Cancerversary....
My first cancerversary as we cancer survivors call the anniversary, is today. It was exactly one year ago that I got the phone call from Mt. St. Joseph Hospital asking me to come in for the results of my core biopsy. The rest is history now as I "celebrate" this event.
The past 9 days have been filled with memories of the first "waiting game" after I found the lump. I have not slept well and the feeling of stress that had diminished over the past couple of months has returned. My head hurts to turn and this has only been noticeable for the past week or two. Yesterday I even felt apprehensive as I had blood drawn for routine blood work for a baseline. No doubt the fact that blood can only be drawn from my "good" arm and there is only one tiny vein that is accessible to most technicians did not help and in fact dredged up memories of all the tests done in the last 12 months. My GP has ordered a full physical so that we have a baseline going forward and this is a good thing but it comes at the end of so many invasive and aggressive tests and treatments.
Cancer is a lonely journey and though I have referred to it before, I feel again that it is true. Because so much of it is in our heads, it is difficult to articulate other than with other cancer survivors, especially those who have had breast cancer since we share so much. This is not to say that I am not grateful to everyone who has cared over this past year but as I attempt to go forward there I know I still have a long way to go before I really can relax and not think breast cancer thoughts. All that I am doing helps and for awhile I thought that I had successfully pushed much of my earlier stress away. Not so!
My emotions are very close to the surface and small things can rattle me easily. That tension when I move my head is a sign too. It is not even thoughts of recurrence now but kind of living through this past year all over again in bits and bytes. I had a wonderful hour long conversation with one of my BCO sisters this morning who was diagnosed the same day as me last summer and we both acknowledged the rocky road this past week or so has been. It was good to talk to Jo and I felt much better after.
Tomorrow I do my planned short course triathlon with Andy and Karalee. Andy (my 21 year old son who has done almost 100 triathlons this year already to raise money for "Right to Play") signed up yesterday at the last minute and plans to shepherd me through the course. He will no doubt be almost back peddling to cycle as slow as me and may have to dog paddle to swim at my speed. He swims 1500 m in 25 minutes and I swim 400 m in 15 minutes so if you do the math it is be laughable. No matter, it is going to be reassuring to have him at my side. We walked the 5 k run/walk part of the course yesterday and part of it is on trails through UBC's beautiful Pacific Spirit Park. I am slightly apprehensive but know that it will be healing in a way to know that I can do it just a year after my diagnosis and aggressive and at times painful treatments.
The past 9 days have been filled with memories of the first "waiting game" after I found the lump. I have not slept well and the feeling of stress that had diminished over the past couple of months has returned. My head hurts to turn and this has only been noticeable for the past week or two. Yesterday I even felt apprehensive as I had blood drawn for routine blood work for a baseline. No doubt the fact that blood can only be drawn from my "good" arm and there is only one tiny vein that is accessible to most technicians did not help and in fact dredged up memories of all the tests done in the last 12 months. My GP has ordered a full physical so that we have a baseline going forward and this is a good thing but it comes at the end of so many invasive and aggressive tests and treatments.
Cancer is a lonely journey and though I have referred to it before, I feel again that it is true. Because so much of it is in our heads, it is difficult to articulate other than with other cancer survivors, especially those who have had breast cancer since we share so much. This is not to say that I am not grateful to everyone who has cared over this past year but as I attempt to go forward there I know I still have a long way to go before I really can relax and not think breast cancer thoughts. All that I am doing helps and for awhile I thought that I had successfully pushed much of my earlier stress away. Not so!
My emotions are very close to the surface and small things can rattle me easily. That tension when I move my head is a sign too. It is not even thoughts of recurrence now but kind of living through this past year all over again in bits and bytes. I had a wonderful hour long conversation with one of my BCO sisters this morning who was diagnosed the same day as me last summer and we both acknowledged the rocky road this past week or so has been. It was good to talk to Jo and I felt much better after.
Tomorrow I do my planned short course triathlon with Andy and Karalee. Andy (my 21 year old son who has done almost 100 triathlons this year already to raise money for "Right to Play") signed up yesterday at the last minute and plans to shepherd me through the course. He will no doubt be almost back peddling to cycle as slow as me and may have to dog paddle to swim at my speed. He swims 1500 m in 25 minutes and I swim 400 m in 15 minutes so if you do the math it is be laughable. No matter, it is going to be reassuring to have him at my side. We walked the 5 k run/walk part of the course yesterday and part of it is on trails through UBC's beautiful Pacific Spirit Park. I am slightly apprehensive but know that it will be healing in a way to know that I can do it just a year after my diagnosis and aggressive and at times painful treatments.
Monday, July 8, 2013
F*CK CANCER!
Summer did finally come to Vancouver and it has been sunny for most of the past 10 days. Dick left 3 weeks ago today and I am slowly getting around to housework which I so successfully put off. I spend time in the garden but can never hope to keep up with the weeds. However I started harvesting my garlic crop yesterday and we have been eating salads from the veggie garden daily so it has not all gone to weed. We have several "volunteers" from the compost we spread in different parts of the garden and it looks as though we will have enough zucchini for the whole neighbourhood. I was kind of hoping for pumpkins but so far it does not look good for them. We finally got word that we will soon have our own chickens. Andy and I have visited our chicks twice recently at KJM Gardens and they are growing fast. We should have them ensconced in the deluxe chicken coop Dick built last fall by the end of the month, once they are sexed and found to be pullets not roosters. I am taking a course on chicken care on Saturday at KJM and we are excited about our newest "pets." I hope our cats Jake and Flobi like them too.
This morning I saw my breast surgeon for the last time. She discharged me fully to my GP. We both hope that I will not have to see her ever again, much as I did like her and her amazing surgical skills. I had a CT scan Friday to rule out any growth of a lung nodule seen last fall on the initial CT done to rule out metastases before chemo started. It was stable and just to be sure, a repeat will be done in a year. I have a mammogram next week for my left breast only, now that I only have one real breast. I see the plastic surgeon also that week as a follow up on the state of my tissue expander following radiation. It seems fine to me and to Paolo, my physio so I expect he will tentatively schedule my surgery for the exchange to an implant for late fall. Then I see the radiation oncologist the following week and fully expect him to discharge me forever too. My next appointment with my medical oncologist is not until January 9, 2014. I will continue to see Paolo as it is so important to break up any scar tissue that tries to form around my breast and axilla area.
I just did a count of appointments since July 18, 2012 when I found the lump. That count is 144 and does include physio and mindfulness classes along with all the cancer appointments but excludes the two surgeries and home care nurse appointments following my mastectomy. It all seems incredible but then a year ago I would never have expected to find a lump either.
Other than feeling that I have a "frog in my throat" and some peeling around the radiation sites I seem to have come through that last phase of treatments reasonably well. I am still very tired at night and the insomnia is back though not nearly to the degree it was during the rest of the treatments. It is often the night sweats that wake me but there is nothing to be done about that since the Anastrozole I take daily to block estrogen is so important. In our mindfulness course we were taught breathing exercises and I am finding them useful during at night in order to get back to sleep. I have one more prescription for Ativan but will not take it unless I really need it. I do recognize the need for adequate sleep though and am mindfully trying to slow down when I get tired and just "chill." Yesterday I even had a cat nap which is so unlike me.
Physically I am nowhere back to normal but think that I have already come a long way. Yoga and all those walks during the past year (not to mention the fact that I had just trekked to LoMonthang in Nepal two months prior to diagnosis) have stood me in good stead and I have been able to ramp it up in recent weeks. Andy the triathlon boy has become my coach as I prepare to do a short course triathlon July 28 at UBC. He walks with me often as part of his 10 k run and I have added cycling. I really notice the muscle wasting that took place especially my thighs during those long months of treatment when I could not or did not want to eat enough. I have gained lots of weight back and slowly the cycling will improve. I swam on Saturday for the first time in ages with Karalee Greer, who will be my triathlon partner. The course is 400 meters of swimming, 11 k cycling and a 5 k run which I will walk given that I cannot run even at the best of times. July 28 will be 366 days after my diagnosis of breast cancer and I can think of nothing better than doing my first ever triathlon wearing the t-shirt I have ordered which says "FUCK CANCER." They also come with little pink ribbons through the U but I choose to say it like I want to, and too bad if anyone takes offence!
The mindfulness course I took at the cancer agency ended two weeks ago and I hope to carry on with practice. One of our teachers quoted from a book but my chemo brain is still ongoing and I can't remember who to attribute the quote to. However I really do remember the substance of his three suggestions that he thinks would make the world a better place. They are simple but make much sense and I am mindfully practising them whenever I think to do so. I should not be judgmental, I should not be controlling and last but not least, I do not need to be right.
10 days ago, the 28 year old daughter of very good friends died of sudden cardiac arrest linked to high anxiety. She had been practising much of what I have been learning, but in a Buddhist Monastery in Thailand that she lived across the street from. She was a beautiful and wise young woman and I believe that she is at peace though the tragedy has brought much grief to her loving parents and sister who was her soul mate and best friend. It certainly made put my own breast cancer in perspective. Yes, it has been a rough year but here I am. I find that I am slowly beginning to fathom the impermanence of not just our thoughts but also of our lives. She touched many people in her young life and if we all practice more compassion as she did, then of course the world will be a better place. I listened to a short address HH the Dalai Lama gave yesterday on the occasion of his 78th birthday and the gift he wished for the most was that we all practice compassion.
This morning I saw my breast surgeon for the last time. She discharged me fully to my GP. We both hope that I will not have to see her ever again, much as I did like her and her amazing surgical skills. I had a CT scan Friday to rule out any growth of a lung nodule seen last fall on the initial CT done to rule out metastases before chemo started. It was stable and just to be sure, a repeat will be done in a year. I have a mammogram next week for my left breast only, now that I only have one real breast. I see the plastic surgeon also that week as a follow up on the state of my tissue expander following radiation. It seems fine to me and to Paolo, my physio so I expect he will tentatively schedule my surgery for the exchange to an implant for late fall. Then I see the radiation oncologist the following week and fully expect him to discharge me forever too. My next appointment with my medical oncologist is not until January 9, 2014. I will continue to see Paolo as it is so important to break up any scar tissue that tries to form around my breast and axilla area.
I just did a count of appointments since July 18, 2012 when I found the lump. That count is 144 and does include physio and mindfulness classes along with all the cancer appointments but excludes the two surgeries and home care nurse appointments following my mastectomy. It all seems incredible but then a year ago I would never have expected to find a lump either.
Other than feeling that I have a "frog in my throat" and some peeling around the radiation sites I seem to have come through that last phase of treatments reasonably well. I am still very tired at night and the insomnia is back though not nearly to the degree it was during the rest of the treatments. It is often the night sweats that wake me but there is nothing to be done about that since the Anastrozole I take daily to block estrogen is so important. In our mindfulness course we were taught breathing exercises and I am finding them useful during at night in order to get back to sleep. I have one more prescription for Ativan but will not take it unless I really need it. I do recognize the need for adequate sleep though and am mindfully trying to slow down when I get tired and just "chill." Yesterday I even had a cat nap which is so unlike me.
Physically I am nowhere back to normal but think that I have already come a long way. Yoga and all those walks during the past year (not to mention the fact that I had just trekked to LoMonthang in Nepal two months prior to diagnosis) have stood me in good stead and I have been able to ramp it up in recent weeks. Andy the triathlon boy has become my coach as I prepare to do a short course triathlon July 28 at UBC. He walks with me often as part of his 10 k run and I have added cycling. I really notice the muscle wasting that took place especially my thighs during those long months of treatment when I could not or did not want to eat enough. I have gained lots of weight back and slowly the cycling will improve. I swam on Saturday for the first time in ages with Karalee Greer, who will be my triathlon partner. The course is 400 meters of swimming, 11 k cycling and a 5 k run which I will walk given that I cannot run even at the best of times. July 28 will be 366 days after my diagnosis of breast cancer and I can think of nothing better than doing my first ever triathlon wearing the t-shirt I have ordered which says "FUCK CANCER." They also come with little pink ribbons through the U but I choose to say it like I want to, and too bad if anyone takes offence!
The mindfulness course I took at the cancer agency ended two weeks ago and I hope to carry on with practice. One of our teachers quoted from a book but my chemo brain is still ongoing and I can't remember who to attribute the quote to. However I really do remember the substance of his three suggestions that he thinks would make the world a better place. They are simple but make much sense and I am mindfully practising them whenever I think to do so. I should not be judgmental, I should not be controlling and last but not least, I do not need to be right.
10 days ago, the 28 year old daughter of very good friends died of sudden cardiac arrest linked to high anxiety. She had been practising much of what I have been learning, but in a Buddhist Monastery in Thailand that she lived across the street from. She was a beautiful and wise young woman and I believe that she is at peace though the tragedy has brought much grief to her loving parents and sister who was her soul mate and best friend. It certainly made put my own breast cancer in perspective. Yes, it has been a rough year but here I am. I find that I am slowly beginning to fathom the impermanence of not just our thoughts but also of our lives. She touched many people in her young life and if we all practice more compassion as she did, then of course the world will be a better place. I listened to a short address HH the Dalai Lama gave yesterday on the occasion of his 78th birthday and the gift he wished for the most was that we all practice compassion.
Marian and Flobi Pinina
Photo by Andy Leighton, July 6, 2013
Sunday, June 23, 2013
Radiation ends and summer begins...
Summer solstice 2013 has come and gone and so it should be sunny and warm. But so far it has been cool and gray much of the time. But we are in a rain forest and it could be worse as Alberta has discovered this week with extraordinary flooding. Climate change at work? Who knows, but it is over 40 C in Turkey where Dick is now.
It is probably a good thing for me that it is not hot and sunny. I do have radiation "burns" but they are not nearly as bad as many women experience and I suspect that within a few days, they will start to peel. Apparently the areas radiated will be sensitive to sun forever so I will have to be more diligent in the future with sunscreen and covering up. My last blast of radiation was right on schedule June 14.
Unless another cancer presents itself, I am done with chemotherapy and radiation. I saw my medical oncologist on Thursday and will not see her again until January, 2014. I see my breast surgeon one more time next month and the same with the radiation oncologist. I also see the plastic surgeon in July one month post radiation just to make sure my "foob" (fake boob) with its tissue expander still looks OK. I also have a CT scan in July for my left lung to check that the 7 mm nodule that presented on my first CT scan pre chemotherapy has not changed.
As for the tissue expander, it is not particularly comfortable. Imagine a blow up device placed behind the pectoral muscle in your chest which over the course of several weeks post mastectomy was filled with saline. When my elbow hits this foreign mass it feels just plain weird. My range of motion is good thanks to yoga and during my weekly physio appointments, Paolo my amazing therapist, works to keep scar tissue at a minimum. Right now the axilla area which was bombarded during radiation, is very tight but he was careful this week as that last thing we want is for the skin to open up. Lymphedema is still a real fear, having had 14 lymph nodes removed and any entry point for bacteria could be dangerous as could insect or wasp stings. But the yoga and daily 5K+ walks apparently create lots of deep breathing which help to keep the lymphatic channels working.
So how do I feel? I feel better every day. The fatigue from radiation that I expected is real but for me it occurs most of the time at the end of the day and I am so tired that for the first time since diagnosis I am sleeping well. Just after radiation started, I began an 8 week Mindfulness-Based Stress Reduction (MBSR) course at the cancer agency. Yesterday we had an all day retreat and Tuesday will be our last 2 hour session. Since anyone interested can Google it, I will not attempt to explain how it works other than to say that for me it has been a real bonus. Over the past several years I have taken a few meditation courses but somehow the timing for this course could not have come at a better time. It has given me new tools to practice with and a way to look at the impermanence of thoughts, pleasant, unpleasant or neutral. I will be OK no matter what happens.
In addition, several months ago I got a fast track referral from my oncologist to the Compassion Club in Vancouver with symptoms of depression, anorexia, and insomnia. Yikes, to look back to how I felt then and to how I feel now is quite amazing. I know now that post chemo and surgery can be a tough, even dangerous time mentally. Sure there is physical healing going on but the mind also needs healing. Anyway, I wanted to check out the options offered at the Compassion Club which also has a Wellness Center attached. For me, that center has been another godsend. I have energy healing sessions every other week and just yesterday came off the wait list for acupuncture and July 5 will have treatments on alternate weeks. I have gained all of my pre diagnosis weight and though my taste buds are still not what they were and I still have neuropathy in my toes, I am well on my way to recovery.
As planned, Dick left June 17 for Turkey on the first leg of his sailing adventure. He will be working hard installing a water make and other needed preparation for ocean passages on our catamaran, Van Kedisi. He hopes to depart Bodrum on July 19, his 67th birthday along with our old friend and fellow ex Aramcon, Dean French. Marie French will join them in Greece by the end of July. I hope to join Dick in the fall for a few weeks but know that 40C Mediterranean weather would not be kind to me right now.
My goal of the Annapurna Base Camp trek for March, 2014 will become a reality. Already there are several committed trekkers including my sister-in-law from NZ and her partner. They figure that if I can do it post cancer treatment then they would be "wimps" not to come along.
As always, our family continues to enjoy adventures in life. Mary will join Dick for a leg of the sailing adventure in September. Steven plans to finish his degree at UVic in December in time to join Dick in the Caribbean if all goes well. Andy continues his "Right to Play" fund raising and has now chalked up 75 Olympic triathlons this year so far. http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565
The weekend before Dick's departure we had a BBQ here and I managed to get a photo of all five of us together. Who knows when we will all be in one place again?
It is probably a good thing for me that it is not hot and sunny. I do have radiation "burns" but they are not nearly as bad as many women experience and I suspect that within a few days, they will start to peel. Apparently the areas radiated will be sensitive to sun forever so I will have to be more diligent in the future with sunscreen and covering up. My last blast of radiation was right on schedule June 14.
Unless another cancer presents itself, I am done with chemotherapy and radiation. I saw my medical oncologist on Thursday and will not see her again until January, 2014. I see my breast surgeon one more time next month and the same with the radiation oncologist. I also see the plastic surgeon in July one month post radiation just to make sure my "foob" (fake boob) with its tissue expander still looks OK. I also have a CT scan in July for my left lung to check that the 7 mm nodule that presented on my first CT scan pre chemotherapy has not changed.
As for the tissue expander, it is not particularly comfortable. Imagine a blow up device placed behind the pectoral muscle in your chest which over the course of several weeks post mastectomy was filled with saline. When my elbow hits this foreign mass it feels just plain weird. My range of motion is good thanks to yoga and during my weekly physio appointments, Paolo my amazing therapist, works to keep scar tissue at a minimum. Right now the axilla area which was bombarded during radiation, is very tight but he was careful this week as that last thing we want is for the skin to open up. Lymphedema is still a real fear, having had 14 lymph nodes removed and any entry point for bacteria could be dangerous as could insect or wasp stings. But the yoga and daily 5K+ walks apparently create lots of deep breathing which help to keep the lymphatic channels working.
So how do I feel? I feel better every day. The fatigue from radiation that I expected is real but for me it occurs most of the time at the end of the day and I am so tired that for the first time since diagnosis I am sleeping well. Just after radiation started, I began an 8 week Mindfulness-Based Stress Reduction (MBSR) course at the cancer agency. Yesterday we had an all day retreat and Tuesday will be our last 2 hour session. Since anyone interested can Google it, I will not attempt to explain how it works other than to say that for me it has been a real bonus. Over the past several years I have taken a few meditation courses but somehow the timing for this course could not have come at a better time. It has given me new tools to practice with and a way to look at the impermanence of thoughts, pleasant, unpleasant or neutral. I will be OK no matter what happens.
In addition, several months ago I got a fast track referral from my oncologist to the Compassion Club in Vancouver with symptoms of depression, anorexia, and insomnia. Yikes, to look back to how I felt then and to how I feel now is quite amazing. I know now that post chemo and surgery can be a tough, even dangerous time mentally. Sure there is physical healing going on but the mind also needs healing. Anyway, I wanted to check out the options offered at the Compassion Club which also has a Wellness Center attached. For me, that center has been another godsend. I have energy healing sessions every other week and just yesterday came off the wait list for acupuncture and July 5 will have treatments on alternate weeks. I have gained all of my pre diagnosis weight and though my taste buds are still not what they were and I still have neuropathy in my toes, I am well on my way to recovery.
As planned, Dick left June 17 for Turkey on the first leg of his sailing adventure. He will be working hard installing a water make and other needed preparation for ocean passages on our catamaran, Van Kedisi. He hopes to depart Bodrum on July 19, his 67th birthday along with our old friend and fellow ex Aramcon, Dean French. Marie French will join them in Greece by the end of July. I hope to join Dick in the fall for a few weeks but know that 40C Mediterranean weather would not be kind to me right now.
My goal of the Annapurna Base Camp trek for March, 2014 will become a reality. Already there are several committed trekkers including my sister-in-law from NZ and her partner. They figure that if I can do it post cancer treatment then they would be "wimps" not to come along.
As always, our family continues to enjoy adventures in life. Mary will join Dick for a leg of the sailing adventure in September. Steven plans to finish his degree at UVic in December in time to join Dick in the Caribbean if all goes well. Andy continues his "Right to Play" fund raising and has now chalked up 75 Olympic triathlons this year so far. http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565
The weekend before Dick's departure we had a BBQ here and I managed to get a photo of all five of us together. Who knows when we will all be in one place again?
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