Saturday, November 30, 2013

What a difference a year makes...

Admittedly I borrowed part of this title from a ham radio message Dick sent yesterday from our catamaran currently crossing the Atlantic. http://sailvankedisi.wordpress.com
As of the last message I received today, all is well and some challenges caused by weather and the autopilot going on strike have been handled and "Otto" is back at work. But Dick did say yesterday "what a difference a day makes."

For me, recollections of a year ago are dimmer but not gone. Chemotherapy had made me very sick and in the end I was hospitalized the first week of December, 2012. This year I feel pretty good and am excited at the project of surgery on Dec. 6th. That probably sounds crazy to most people but I am looking forward to finally having reconstruction. It will have been almost exactly 9 months since I had my mastectomy, 10 months since I finished chemo and 6 months since I finished radiation.

For those who read my summer and fall posts, you may recall that I had a few niggling issues. I would like to say that in retrospect that I think radiation was far worse that chemotherapy. Fatigue was and still is a side effect. It is possible that the lump I feel that I swallowing over is not those benign thyroid nodules at all but in fact damage done by the radiation to my swallowing muscles. I saw the thyroid endocrinologist recently and he said this was possible and we will just wait and see but sometimes it is super irritating to have what feels like a big frog in my throat! My head and neck are still an issue and I believe this was directly caused by radiation which led to scar tissue building up. No doubt the mastectomy and axillary dissection started that process but radiation certainly worsened it.  Again I have to thank my wonderful physio for continuing to break down that scar tissue in preparation for surgery next week. Also my acupuncturist has been working on my head and neck using electrical stimulus and I think that is helping too.

I still have numb toes and short eyelashes (at least I have some~~they fell out more than once) but my hair has grown in great and I even had a real haircut in October. It is quite curly and baldness is really a distant memory.


So I guess my message now is that even though I have some "cancer take-aways" as Peter and Anne, both who have had cancer of different sorts call them, I am alive and kicking. I snowshoed for the first time this season last week near Calgary with Wayne and Anne. I hiked the week before that in a monsoon on one of our local mountains with two friends who are coming to Nepal with me in the spring and we survived that just fine.

So the next post should be after my surgery next week and I hope to report that all went well and that I have cleavage!

Sunday, October 13, 2013

Another fall...

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.



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.



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.



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.







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.





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?







Sunday, May 5, 2013

Radiation and a new vocabulary...

Spring has finally appeared. It is sunny and warm and the forecast is for a few more day of the same. Mary hit the beach yesterday then came by to cut a few more squares for her first ever quilt. Steven mowed the lawn this morning and Dick is enjoying fine weather on Bainbridge Island near Seattle. He is staying with our very old friend Chris whose wife died from inflammatory breast cancer several years ago. He is working out how to pack the water maker he bought for our boat in order to take it as baggage when he flies to Turkey June 17. I was unable to go as I had just taken my old passport in for renewal when Dick found that West Marine in Blaine, Wa. had several other parts, all to do with emergency at sea~~AIS, EPIRB and radar reflector ready for pickup.

At last I am feeling more myself and just in time for radiation to finally begin. I still have lingering effects from chemotherapy and my medical oncologist says this is normal though I do hope that they go away completely at some point. I am back on the aromatase inhibitors which will increase my insurance against recurrence considerably. I am to keep a journal to track side effects. So far no nausea as earlier but already night sweats are becoming regular so I may have to adjust the timing. Since osteoporosis is the worst offender I am happy that I am still walking my 5 k daily along with yoga which I hope will help to ward off that possibility.

Finally radiation is to begin. The CT mapping/simulation took place April 23 after my plastic surgeon added one more fill to my tissue expander. The "foob" or fake boob is now bigger and higher than the real one so I am decidedly lopsided though it seems that I am the only one who notices. I guess most people are too polite to stare long enough to see the difference. I walked to the river early last evening and did not wear a head covering. Again, it may be that no one notices but I do feel slightly uncomfortable when I pass other walkers and make eye contact. My hair is growing, but very slowly.

But back to radiation. It has its own language and the actual planning is done by a physicist and a radiation oncologist. The basic unit of radiation is called a Gray. The average amount of radiation received during a chest X-ray is 0.005 Gray and during a mammogram 0.003 Gray. I will receive 50 Gray or more over the course of 28 treatments. I already know that as usual, I get the "whole meal deal" due to the fact that there was extensive lymph involvement. There are lymph nodes above the clavicle and since I still had one cancerous node removed in the latest surgery, it is entirely possible that some of the "supraclavicular" nodes are also positive. Apparently chemo does not always kill what it is supposed to. So I will have radiation from and including my breast bone, the full breast and axillary area under my armpit and above the clavicle to half way up my neck.

I have lots of new handouts on what to expect, what to wear, what to use to moisturize several times a day, no sun exposure and so on. If all goes according to plan (nothing so far has quite done that) I will start radiation Tuesday and complete my 28 treatments on June 14, just in time to celebrate with Dick as he heads off to Turkey from Seattle on June 17. I also start a Mindfulness course this Tuesday and that entails 8 sessions plus an all day event. I have been on a waitlist since January for that course which also takes place at the cancer agency. I think that the timing may be just what I need and I look forward to meeting some women also going through treatment. There is nothing like spending time with women  who share the crazy roller coaster ride of breast cancer. I had lunch on Easter weekend with 3 other survivors who had been virtual friends via a breast cancer internet site prior to our meeting and it really was wonderful to be able to share our stories.

Although it has been my intention all along, I finally put together an itinerary for next spring that I think of as both a goal and a reward:

Adventure Nepal 2014
Marian’s Inaugural Breast Cancer Survivor Trek
Annapurna Base Camp/Kathmandu/Chitwan National Park


http://samsarajourneys.com/fixed_departure_adventure_nepal.php

I know that for me, it is ambitious but I hope that others take the opportunity, regardless of whether they  are a breast cancer survivor or not, to consider the challenge of trekking in Nepal next spring.


Annapurna Base Camp, 2011
Photo by Marian


Razzu and Marian, ABC trek, 2010

Saturday, April 13, 2013

Spring with breast cancer

Well, spring in Vancouver is an up and down thing, just as my life with breast cancer is. Two days ago it was sunny with bright blues skies and the hope of real warmth soon to come. Yesterday that all changed to almost freezing rain and today it is just cloudy. Kind of how I feel; mixed emotions and often cold and cloudy thoughts with the occasional warm surge of optimism. I will not sugar coat how bad the past month has been. It has been down right depressing again with that trapped feeling of how am I going to get out of this.

In the 4 day week prior to Easter, I had six appointments, three of them with doctors, two different physio sessions and one appointment with a counsellor at the cancer agency. I saw my medical oncologist who I had not seen for 2 months, just prior to my last chemo session in January. I now consider this ridiculous. To see your primary cancer doctor every two weeks for four months and then not for two months does not make sense to me and I will state that when I see her next. Anyway, back to the actual appointment; first I saw a resident who I was not prepared to explain my sad and sorry tale to but did allow her to examine me and answer a few questions. I must have appeared pretty pathetic because soon after a nice older nurse appeared to ask me more questions. By the time my oncologist appeared, tears were slowly falling and all I could do was try to explain how terrible I felt, physically and mentally.

Looking back on the past six months, I realize that I saw her every other week during chemo but for very short periods and since I had been coping reasonably well in her eyes anyway, there seemed to be need for longer conversations. I recall my last appt. with her in late January and it could not have been longer than five minutes. I sort of recall trying to explain my mild signs of neuropathy while saying that I was still walking often and had even snowshoed that week. I guess that she heard good news without noticing any bad and other than my hospitalization in December, I suppose she thought I was coping well. Well, she did take note at this last appointment and was concerned.

I have mentioned before, how lonely this breast cancer journey is. While we see our primary cancer doctors for a few minutes each appointment, we think about our breast cancer constantly and have many questions that are impossible to expect answers from in those short meetings. So we share experiences and questions with virtual friends online, talk to friends who have had breast cancer, read books and articles and try to become as educated as possible as each treatment or surgery comes along. But ultimately, we are alone with our thoughts.

Whether those thoughts are helpful or not is a moot point. It is not always easy or possible to remain positive. In my case I tried to stay upbeat by continuing my almost daily 5 k walks and my yoga classes (which were disallowed after surgery for several weeks). Eating well fell off after surgery as I suffered from nausea and vomiting initially. My taste buds affected by chemo are still not normal and so I have been eating to live rather than living to eat, thus I have lost weight again. But depressed as I have felt the good news is that I did keep walking most days and have rarely stayed in bed.

In that week of many appointments, I also saw my breast surgeon who did the mastectomy and axillary dissection part of my March surgery. She went over my pathology with me though since then I have asked for some further information from the pathologist. What it does show is that 6 more lymph nodes were removed along with my breast and one was positive for cancer. It had become what is called extra nodal so the metastatic breast ductal adenocarcinoma extended into the fat. So now my stats are 7/14 lymph nodes positive for cancer. My chances of getting lymphadema are now higher and with radiation will go to 20%.

I also saw the plastic surgeon that week for my second fill of 60 cc into the tissue expander under my pectoral muscle. He decided he wanted to do one more fill which meant putting off the radiation CT simulation. I had that fill the following week but by then part of the incision was separating and so this week a section of my incision was excised as part of it had become necrotic. In reading the original operative report I noted that the SPY machine showed a large area of compromised blood flow to part of the mastectomy flap but after SPY was used again, "all tissues appeared to be viable." Apparently not says the plastic surgeon this week. SPY measures blood flow and is the only such machine in use so far in Canada and UBC only started using it in January. My surgeons did not quite believe SPY and so I was a bit of a guinea pig. Oh well, someone has to be!

The plastic surgeon also had to remove the last "fill" of saline put in last week as he said it would be counter productive to try to close a wound with a full tissue expander underneath. Also he said that normally he would not be doing the fills so fast but again, the radiation gang want to get their hands on me. At one point a few months ago, there was a lot of discussion about "windows" between chemo and radiation or surgery and so on. Of course we patients worry about these windows because the bad old cancer cells lurking and waiting for an opportunity might take the window route while no one is looking or treating.  But I have not seen the radiation oncologist since December and only communicate via phone calls to postpone treatment as we wait for my incision to heal and my new boob to fill up with saline. When I saw my medical oncologist in March and she seemed OK then about the time sequencing.  Given what a basket case I was, I honestly don't think she was worrying about lurking cancer cells.

So next week I get another "fill" and April 22 I will have the CT simulation for radiation. Maybe. After all it has been postponed twice already. I still have the after effects of chemo. My taste buds are still not back to any real extent which means that the post surgical weight loss has been tough to gain back. My toes remain numb from neuropathy. My fingernails have little odd coloured craters in them. But I do have some hair~~about 1/8 inch of length and my eyelashes are also growing.

I used my new iPhone in the garden this week to try to take my own photo. In most of them I just felt so old looking. I suppose these many months of aggressive treatment have aged me but I think the weight loss too has accentuated the many fine wrinkles I see in my face and on my neck. But I have to see this as the new me and like what I see in order to move forward so I actually uploaded one of those photos to Facebook. This is it with one of our cats Jake, also in it. Both cats have been with me throughout in a way only cats can be. Flobi is curled up right beside me now and Jake is not far away.




For an update on Dick and the crossing of the Med and then the Atlantic, it is a "go." He has crew for all legs and leaves for Turkey June 17. I am not sure what I will do once radiation is done as for me it is  still one day at a time but it will involve hiking and yoga and maybe a couple of weeks on Van Kedisi in the Med if I am fit enough. Dates have now been set for a 2014 Nepal adventure including a trek to Annapurna Base Camp. March 22 to April 10 are the dates so if any of you are interested let me know. When I finally decided this week to take concrete steps for the timing, I knew that I was on the way back up. For those of you who have already expressed interest, an itinerary/costs will be coming your way soon. I have thought about calling it "Marian's Inaugural Breast Cancer Survivor Nepal Trek" but it seems a bit unwieldy. Ideas are welcome!



Tuesday, March 19, 2013

Communication and guilt...

After writing the most recent post this morning I realized that I had wanted to try to express some of my frustrations around communication. Since I myself find it difficult to articulate how I am feeling hour to hour, day to day with so many conflicting emotions and thoughts, I have to wonder how it is for those close to me. I suspect there has to be some "breast cancer fatigue" given that this has been going on for so long. I am certainly caught up in it and though I am assured that a few years down the road, much of this will be distant memory, this is not the case for now.

I have tried to write some of the myriad of thoughts down and it does help to post on this blog too, if only to force myself to make some sense of what goes through my mind most often. I am often short tempered and when I try to understand why, I sometimes think that I do not want to be asked yet one more time how I am. What am I to say? If I actually am in pain, I feel sick, I am not coping well, what will be the response? What can anyone really do about it? Of course everyone is concerned but there is a limit on what is helpful. Of course I appreciate the concern of my friends but I just get so tired of the constant reminder that I am not part of "normal" anymore; at least what was my old normal~~that is gone forever. Often I would just like to retire off to some hermitage for the duration. But of course that is not going to happen.

Next week I have 6 different appointments and the following week I will start radiation which means I will go daily, Monday to Friday for several weeks. I will hope that my reconstruction will not break down, this possibility being in the range of 40%. "The Intelligent Patient Guide to Breast Cancer," given to us at the beginning of our breast cancer treatments, says 50% but my wonderful plastic surgeon says 40%. I will go with his numbers!

But at the end of radiation, treatments will come to an end, barring the exchange surgery months down the road. Maybe by late spring, I will feel that I can in fact say that there is "no evidence of disease" which is the closest thing to cured as we get.

Meanwhile I hope that I do not alienate my friends and my family as I struggle to weave my way through my emotions and come out on the other side a better person. I know how lucky I am to have so many people rooting for me all over the world and though it may not always seem that I appreciate it, please know that I do. It is not always so easy to show. And I often feel guilty for not showing or voicing my appreciation.

But I definitely appreciate your thoughts and words whether by email, cards, Facebook postings or the occasional phone call. There should be a "new me" to face by summer!


8 months and counting....

Eight months ago yesterday I found the lump that was breast cancer. Two weeks ago today I had a second surgery, the first having been a lumpectomy and sentinel node biopsy last September. This time I had a total mastectomy, axillary dissection and immediate reconstruction with a tissue expander. A  week from now I will have CT simulation for a 6 week course of radiation which is supposed to start in two weeks.

I find it hard to believe that radiation will start so soon~~it seems to be that healing from surgery has barely begun. Yet I sense the urgency to begin from both my medical and radiation oncologists. Chemotherapy ended January 28 so it will be 9 weeks since I had that protection for recurrence, the big scary word that is always there. I am often reminded that even in the first surgery, 6 out of 8 lymph nodes removed proved to be positive and I was found to have extensive lymphovascular invasion. So yes, I guess the sooner we start radiation the better.

But then I read about radiation and its range of possible side effects and my fears gather again and threaten to overwhelm me. I have had surgery, chemotherapy, more surgery and last week started to take a drug called Anastrozole that I will take daily for 5 years~~another treatment to ward off recurrence. It has its own list of side effects, the worst being osteoporosis and fractures. On a more humorous note, at least now that it has passed, I neglected to read up on the more immediate and common side effects, number one being nausea. So the first day I took the drug and also my third day post op, I was surprised by sudden nausea and vomiting. Aha, there it was on page one!

Two weeks post op and I am again walking my usual 5 kilometre route to the Fraser River and back. This I have been doing the past few days with my good friends who continue to offer support. In fact,  I still have loads of support from family and friends. They praise my ability to recover so quickly and are happy and willing to do anything I might ask.

But my reality is one of daily awareness that I have breast cancer with a high chance of recurrence. I am still in the midst of the aggressive treatments required to stop or at least control it. As I enter month 9, I feel that for much of each day and night, I am alone with this awareness. It is very hard to understand this state of being unless one has had breast cancer or perhaps some other sort of aggressive cancer that has taken over one's life. I may appear to be handling it well, physically and may sound cheerful but so often it is more of a reflex; a need to have some control over how I appear.

I am thankful for breastcancer.org, an online forum which provides "virtual friends" who are going through so many of the same things at the same time. Books and doctors only tell us so much. Connecting with my breast cancer buddies 24/7 means constant reassurance and often real hope for the future.

And so another day starts. Awake at 0400, up at 0500 and at 0730 my son Andy has just appeared to start Triathlon #43 for the year. He continues to do these marathons in support of "Right to Play," and has so far raised $1350. His continued commitment will no doubt provide much needed funds for poor and underprivileged kids in many third world countries. He does make me feel proud and inspired and is one of my own greatest supporters. Though he has not updated his page on the Right to Play website recently, this is the link: http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565

Saturday, February 23, 2013

Chemo Land


Insomnia again...

Just when I thought that my sleep habits were improving, tonight I woke up out of what seemed like a deep sleep with a ridiculous night sweat. I have never actually seen this written anywhere as a side effect of chemo but it must be one as it has been frequently plaguing me since I started the Taxol. It may be a lingering S/E as I am now more than 3 weeks PFC as it is said in breast cancer land. Post final chemo apparently though for the longest time I was sure it must mean post fucking chemo. So while towelling off a ridiculous amount of sweat, Flobi our tabby cat came meowing and joined me in bed. He seemed to enjoy licking my bald, salty head but soon curled up beside me while I found myself wide awake. Another hot chocolate late at night while I read my last blog post.

Then I read the results of my bone density test done last month. This was done as a baseline as I will start a drug called Anastrozole, an aromatase inhibitor on March 8. If all goes well I will take it daily for 5 years to ward off a recurrence. The main side effects are osteoporosis (bone loss) and fractures. But given the alternative, I will go for the bone loss. My oncologist says that due to my weight bearing activities, I should fare OK. All the more reason I think to have that Annapurna trek goal for next March! Meanwhile the density in my lumbar spine falls within the normal range but in my femoral neck it is osteopenic, the precursor to osteoporosis and thus hip fractures, which this report says I am moderately at risk for over 10 years. So I will be taking a risk but hope that for me, the side effects will be minimal.

I have found myself feeling angry, frustrated and sad once again and it is difficult to determine why. Well yeah, I do have breast cancer and have just entered the 8th month of treatment but still, why now and what can I do about it? Sometimes I just want to retreat and hide away but that is not very realistic. And I feel guilty for feeling the way I do. After all I am getting the best care in the world. But no matter how much I wish the troubling thoughts away, they persist.  Not having control over what is happening is a big factor. It is what it is, and though I accept it as necessary to save my life, it is tough to continue down the medical path of more drugs, more surgery and then radiation and more surgery. I work on being as healthy as I can to mitigate the side effects and to hasten the recovery from each treatment but I often feel helpless as I go through the process.

I have been a planner for a long time and those who know me understand that I thrive on working on the next trip, the next trek, the next sailing adventure or even next week's hike and of course, experiencing the fruition of that planning. But at this time, I feel like I am spinning my wheels. Intellectually, I know that there is an end to all the treatments for my breast cancer and by the end of the year I will be able to look back on it with relief but that is then not now.

And so it is; I am walking my 5 km a day, going to yoga, eating healthy food, drinking very little alcohol and looking forward to spring. The roller coaster ride of breast cancer continues and I suspect that the light is just around the corner and my darkness will lift, just as it has before. This is my hope as I try to go back to sleep.

Monday, February 4, 2013

Sick of breast cancer...

Yeah I am sick of it for sure. Funny how that looks now that I have written it~~but maybe it is apt. Breast cancer has after all made me sick. Not the cancer itself of course since it is just an insidious beast lurking inside me and without the lump, it could still be quietly waiting. But no, it is the treatment of course that has made me sick and sick of the reason for it. But without the treatment that insidious beast would awaken and it would not be the treatment making me sick; it would be the cancer which would also be seriously trying to kill me.

Insomnia is also part of this journey. I have always been a light sleeper and my hearing is so acute that the slightest noise can wake me. Dick sleeps like a log and though he rarely snores, he contentedly puffs away the night. This I hear even with my earplugs in. Ativan helps but then there is the addiction worry. I am not REALLY concerned though every time I take my Ativan I do have fleeting thoughts of sleepless nights down the road when I will have no excuse to take sleep aids. I tried Melatonin a few nights but it gave me nightmares so bad I can't even attempt to describe them. And then Ativan does not alway work as in tonight. Lying in the dark tonight while I tried to go to sleep on Ativan I thought about Cheryl Strayed, author of the book "Wild" which I had just finished. She hiked the rugged Pacific Crest Trail at age 26 totally on her own with no prior backpacking experience but with a pretty crazy background. What amazing spirit!

But then her hiking adventures led me to thinking about this time last year when I was training for a short solo trek (with guide and porter) in the Helambu area of Nepal and a high altitude trek to Lo Monthang in Upper Mustang near the Tibet border with Dick and a group of old friends from our Saudi days. Both treks were wonderfully successful and by the end of May I was back in Canada planning for another Annapurna Base Camp trek in October. That was falling apart due to group member circumstances just as I found the now infamous (at least to me) lump July 18.

I can mentally play out that ensuing drama on insomnia nights and let me tell it does not provoke sleep no matter how many times I run through it! "What the fuck" comes to mind often. How did this happen? Yeah it is what it is but still, I sometimes wish that it has all been one of those really bad dreams that you wake up from saying "thank god it was just a dream." Honestly I still want that to be true.

From training for treks to training for surgery is how it is now. Tonight I decided that tomorrow is the day I will really get disciplined and this will include yoga, meditation and walks with a few more snowshoe days thrown in. But then insomnia came along and here I am late at night downstairs drinking hot chocolate while I should be sleeping in preparation for the healthful training I have planned for myself.

It is almost impossible to go a day without knowing I have breast cancer, no matter how much fun we have. There are the side effects of course from chemo but there is also the long string of appointments with so many doctors, so many tests and alway the next looming treatment.

Tonight too I was thinking about my choice of surgery. Full mastectomy and axillary dissection are not optional but reconstruction is. For months I thought about that choice. I read all I could in my two favourite breast cancer books; "The Intelligent Guide to Breast Cancer" which we are all given here in Canada on diagnosis and "Dr. Susan Love's Breast Book" which is given out in the US. I spent time with a woman who had the same reconstruction done by the same plastic surgeon as I will have. Knowing that this requires more surgery, anesthetic and recovery time, I have often pondered my decision. I have spoken to women who have had bilateral mastectomies and done nothing and to women who have had reconstruction at the time or later. Each has her own reason for her choice. I do think that having both breasts removed may have swayed me to do nothing, though I am not really sure.

There has been much written about how women feel about losing their breast(s) and how they make the decision to do nothing or to have reconstruction. Though I have small breasts to start with this does not make it any easier to visualize my left breast there but nothing on the right side. To go through surgery, chemo, more surgery and radiation is wearing but that is not all that we have to contend with. There is nerve damage, numbness, the possibility of lymphedema, a very serious situation in which the lymphatic system no longer drains properly due to the removal of lymph nodes and to top it all off, our breast or breasts are gone. And there is still the fear of cancer still remaining or recurring.

Then there was even a small twinge of guilt or maybe selfishness. Choosing reconstruction means longer recovery time and more surgery months after radiation. This means more dependence on family and others to a certain degree. I also thought briefly that if I chose not to have reconstruction that maybe I could still sail across the Med and the Atlantic with Dick. I soon came to the conclusion that it is unrealistic to consider that idea as no matter what I choose,  treatment and subsequent care will extend far beyond the time frame for the start of the sailing trip.

So yes, I am sick of breast cancer. It has been a tough learning curve that never seems to end. I know it will end but is is not really helpful at this point to be told that a few years down the road much of this will be a distant memory. For now, breast cancer is front and center no matter how well I am coping. I also know that I should not feel guilty or selfish for choosing to still have a breast at the end of the day. If it does not work out at least I have given reconstruction my one and only chance.


Wednesday, January 30, 2013

Chemotherapy

Yesterday was my final day in the BGC (big girl chair as my breast cancer gang call it). Mary came with me and did some filming so maybe one day soon you can all see our wonderful chemo setting on the 6th floor of the Vancouver cancer agency. Though maybe a bit hard to believe, I have found over the course of my 8 chemo sessions, that it is a warm and positive place. As patients we are all there hoping that our treatments will put our different cancers at bay. Often there is a genuine wish to share experiences and the volunteers some with dogs in tow, some with their own cancer stories to tell all add to the mix. The nurses are all warm and caring and so knowledgeable.

Our chemo floor does not have a big bell to ring at the end of chemo as many American ones do but I am not sure that I really wanted that anyway. I was happy to have the sessions end but I am not quite there yet with feeling it is the end. Many patients are back with recurrences and in the back of my mind I know there is that chance for me too. I am not going to dwell on that but it is a reality. My nurse, Jen did give me a big hug and the other patients in my room wished me well.

Before I got my Taxol each time I got 20 mg of Dexamethosone and 50 mg of Benadryl IV. These are to ward off any allergic reactions mainly from the solvents used to render the Taxol infusible. So I turn in a bit of a zombie for awhile with dry mouth and slurred speech. Oh well, a small price to pay for no allergies and the benefit is lots of steroid energy for a couple of days following, like today!


Now for my chemo comments. On another blog I am following, a young woman also here in Vancouver with breast cancer, posted what she called a "Letterman" style list of the 10 worst things about chemo. Funnily enough just a few days prior while waiting between yet more appointments, I had made my own list. I used two pages, one for positive and one for negatives. The negatives won!

Negatives:


  • loss of the hair on my head~~buzz cut video way back in October. 
  • hair loss everywhere else I have hair~~most annoying has been nose hair as my nose runs non stop outside especially when walking, hiking or snowshoeing. One day I was leaning over to grab some toilet paper in a public bathroom just prior to a hike and snot suddenly poured out so fast it left a puddle on the floor. I read and laughed out loud when a fellow BC writer described doing the same on a boardroom table!
  • watery eyes due to dryness caused by chemo and drugs taken along with chemo
  • dry nose with bleeding especially at night if I end up nose breathing~~no nose hair does not help.
  • dry skin and more age spots (hope that is just my imagination!)
  • mouth sores~~compromised immune system
  • diarrhoea, constipation
  • nausea
  • loss of taste buds
  • weight and muscle loss
  • fatigue
  • unmentionable infections
  • anaemia, neutropenia
  • headache and fevers
  • muscle pain 
  • neuropathy (this is the latest for me from taxol)
  • chemo brain~~this is a very real consequence but seems that it is reversible. 
  • fear, anxiety, anger, frustration
Positives:

  • Chances for reflection on what is important (and not so important).
  • Understanding what I am grateful for.
  • Having my family support me and make me laugh (and cry sometimes).
  • Renewal of friendships.
  • Knowledge that my chance of survival is greatly increased.
  • Meeting other cancer patients and hearing their stories.
  • Knowing what an amazing cancer center we have in Vancouver. 



 BC Cancer Agency chemo room~~last infusion!





Celebratory glass of wine with Dick last night!




  

Saturday, January 12, 2013

Treatment plans and ocean crossings...

Last July I booked one way award tickets for Dick and me to fly to Turkey. Our Prout 39 catamaran has been based in Turkey since 1997 and last year we finally made the decision to sail across the Mediterranean and Atlantic to the Caribbean. When we lived in Saudi Arabia, having a boat in Turkey made sense. We still love Turkey but now that we are back in Canada with the same northern hemisphere winters, it made sense to move our boat to a warm winter destination.

We took a course called "the psychology of cruising" last spring and I was able to shed some of my reservations about long distance cruising. Dick is the real sailor and has done ocean crossings as recently as 2009 when he crossed the Atlantic on a catamaran owned by friends. He has also spent countless hours preparing our boat for this adventure. It has been his dream for decades to sail part way around the world and I was "onboard" (pun intended) at last.

Two weeks after I booked those one way tickets, I found the lump. Even then, we anticipated that after my lumpectomy, radiation would follow and I would still be ready to go by spring, 2013. As we all know, plans change and in this case the our plans have changed dramatically.

So there are now two plans. One is my treatment plan and other involves Dick sailing from Bodrum, Turkey to the Caribbean without me. My plan takes me well into next fall and Dick's plan tentatively has him leaving Bodrum in July and arriving in the Caribbean in December. His plan requires that he find crew for all stages of the journey. Weather and the boat standing up to thousands of miles of rigorous sailing will also play a part if he finds his crew.

My plan is less tentative though with breast cancer I have found that there is no certainty. On March 5th I will have a full mastectomy, axillary dissection and the first part of a two stage reconstruction. Following surgery and healing I will have 5-6 weeks of daily radiation. This should take me well into June. With a minimum of 3-6 months after radiation, I will have the second stage of reconstruction. Ins'allah (god willing) was a word much used in our 18 years in the Middle East and we still find ourself using it. So ins'allah this plan will actually work out.

Both plans involve strength and determination and a possible separation of many months. I will also have to ask our good friends for a continuation of support that has been so readily been given.

Christmas in the Caribbean does sound good. Stay posted for updates. Conversations continue.

Photo taken by Dean French August, 2012.





Friday, January 11, 2013

2013 - a new year with breast cancer...

As I sit in our sunny living room this afternoon, still in my pyjamas, I ponder what I really want to write about. I have a long "to-do" list that just keeps getting longer but yesterday I decided to kind of take today off with the goal of posting on my blog and if that is the only thing I get done, so be it.

I was glad to see the end of 2012. Though Christmas did turn out to be fun, I was never really well. The last days of the year found me in dark places again, Low grade fevers persisted and I found myself again with too much time to think but not enough energy to even go to a yoga class or walk very far. I imagined worse case cancer scenarios and became increasingly impatient. My behaviour must have been almost intolerable for Dick as I vented my anger and frustration on the person closest to me.

I saw my oncologist on New Year's Eve and she started me on a new antibiotic. Either that and/or the sun that came out in the new year gave me a new perspective yet again as I started to feel better. I am learning that illness renders weakness that for me is hard to comprehend and live with and it takes wellness to understand that. I read back in my journals (sketchy as they are) from past years and found that I have struggled each winter since our return to Canada with what some people call SAD, or seasonal affective disorder. Even though I felt almost guilty then, that I could allow myself to wallow in despair, this year was compounded by breast cancer and illness caused by chemotherapy.

My recovery over the past 10 days has included another cycle of Taxol, my latest chemotherapy which could have laid me low. Instead I have felt almost "well," and have fleeting thoughts of what life might be like after chemo. I was able to snowshoe with friends on Tuesday and hike with my club yesterday.

When I checked in on Facebook today, there were many new posts. One of them was written by an old friend from our Vancouver school days and could not have been more timely ~~~ "lessons in practical optimism - those who have the strength can carry mountains." He wrote this while adding a link to this blog. For those of you reading this, you will know that the photo of me here has Mt. Everest in the background. In 2008 that was the hardest thing I had ever done. Breast cancer treatment is now the hardest thing I have ever done but with friends like Steve who wrote that post, I will conquer this and strive to "carry more mountains."

Maybe too I will learn that strength comes in different forms. What I have considered as weakness may not be that at all. Uncertainty is unsettling too but again, this is a new norm and something else that I can and need to learn from. Though the roller coaster ride continues, every positive step and thought is a step forward. I cannot always stop the negative thoughts but I can work to minimize them!

2013 was also the start of an amazing goal for our youngest child, Andy now age 20. He is raising money for "Right to Play." I am adding his link:

http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565

Andy has already completed 6 triathlons since his first on January 1. Twice so far he has asked me to walk part of the 10 k runs. Normally he actually runs them but I was so happy that we had those walks together this past week and I look forward to many more. Maybe I will even be able to manage 10 k one of these days.

The photo was taken on Tuesday on Cypress Mountain. It was pouring rain in town but snowing lightly on the mountain. I look forward to more!