Turkey in the spring with Mary...

Spring in Istanbul with my daughter Mary~~a huge contrast from my weeks in Nepal but really the two cannot be compared. Ann Nevans, the owner of the Empress Zoe Hotel where we have been staying since 1996, offered me a free stay once my breast cancer treatment ended. Since I was unable to sail with my husband from Turkey to the Caribbean last year this was an amazing bonus especially as Mary is spending a year in Turkey.

We have 5 nights here in Istanbul and have made the most of it so far. Yesterday we walked for hours through parts of the city where tourists seem not to venture. Mosques, crumbling Ottoman buildings, ancient churches and glimpses of the Golden Horn along with its eclectic population were our reward. At dusk we took a ferry to the Asian side to meet up with an old friend Serra, a Turkish/Canadian who Mary went to school with in Saudi Arabia where we lived for many years.

In the last post, I talked about how I have gone days without really thinking about breast cancer. That is probably not accurate but what has happened is that I have not dwelt on it and when I do think about it, I am not worried about it but rather think about how different my perspective is now. Leaving Vancouver and the past 18 months of treatment, surgeries and so on have allowed myself yet again to open my eyes to the world and how lucky I am. It is not all rose coloured by any means and in fact today I felt so tired that I felt sick.

Fast forward a few weeks and I am back in Vancouver. Once Mary and I left Istanbul we were pretty much on the go and I happily let go of my computer for much of that time~~only the short times we were at Mary's home in Sanliurfa did I even have Internet.

Istanbul has for 2 decades been one of my favourite cities but this time I found it noisy, dusty and though we enjoyed our walks and the beauty of spring in the parks, we were happy to set off on our adventure to SE Turkey where Mary currently lives. On our first day, we used 7 modes of transport~~taxi to a ferry to the port of Yalova, but a bus and tram to actually get to the city of Bursa where we had a wonderful Turkish breakfast complete with endless tea. Travelling with Mary has always been fun and with her increasing ability to speak Turkish, for me it was so easy. She asked if we could stow our bags with the owners of the cafe and off we went to explore the old city of Bursa. Later, we took another city bus to the terminal for long distance buses where we caught one to Eskisehir then another tram too our couchsurfing destination. https://www.couchsurfing.org
I don't mean this to become a travel blog post but I feel as though my travel with Mary was somehow freeing, maybe because I did not worry about the new things we were doing, couchsurfing being one of them. The next day we took a high speed train, the first in Turkey, to Konya. My ticket was half price due to being a yasli kadin (older woman) and was happy to pay less as a senior citizen for many of our bus tickets too. Our destination day 2 was Guzleyurt in Kapadokya. We wandered around the ancient stone village, once Greek but in the 1920's Greeks were sent to Greece and Turks from Greece to Turkey, no matter than most had been living happily for generations and did not speak their "national" languages. Once settled in our 200 year old stone "hotel" rooms we planned our hike for the next day, a 16 kilometre walk through the Ilhara Valley, home to 400 cave churches from long ago. To get there we had to hitchhike as there really was no other way other than a rental car. Again, I have to say this was freeing and we met wonderful people, both tourists and Turks using this mode of transport. Towards the end of the hike, we found ourselves on the wrong side of the river as the path ended up against a steep cliff. It was either hike back at least 1.5 hours to cross a bridge with the same distance to cover again or ford the river. It was scary for me but with Mary's encouragement and our trusty hiking poles, we did it~~another first for me.

Enough of the travel log but I wanted to use some examples to explain how good it all felt to travel without boundaries or concrete plans and with Mary who made it so easy for me. I am sure there were many times when I was slow or annoying but we hung in there and had so much fun. SE Turkey was a whole new experience and for a glimpse of it go to Mary's short blog she wrote today. http://www.esperanzaeducation.ca/blog/travel/3-places-to-see-in-southeastern-turkey

Now back in Vancouver, I start a new round of medical appointments with the knowledge that breast cancer is still part of my life but that it does not own me and I have lost much of the fear that surrounded me for so long. Clearly travel was good for me!

Mary and I enjoying tea on the river part way along our Ilhara Valley hike.

Yes, we will ford the river!

Boots had to go around my neck~~thank goodness for hiking poles!

Sanliurfa mosque

Mary, my lovely travel companion and faithful servant as she called herself often.

Diyarbakir city walls

Old madrase in Mardin~~not sure what the elephant was doing there!

Trekking in Nepal~~first goal accomplished!

For the first time since July 18, 2012 when I found THE LUMP, I have actually gone through days where I have not thought about breast cancer. Or when I have thought about it, it has been in a different light. Last week I trekked in the Himalaya for the first time since May, 2012 which was just two months short of my diagnosis. I just read the post I wrote in November, 2012 back when I had only recently started the long and hard months of chemotherapy and then I stated that I would be back in the mountains of Nepal this spring.

I chose to arrive in Kathmandu two weeks before my group so that I could do a trek on my own. I did not really feel that I had trained enough through the winter in part due to the lingering effects from radiation and I suppose chemotherapy and in December the reconstruction surgery which set me back even further. However I did walk a lot and as always yoga was a big part of the return to feeling better both mentally and physically. I left Vancouver exhausted to be honest, so spent a few days relaxing, having hour long massages and enjoying the solitude.

Last week I retraced many steps from two previous solo treks in the Helmabu area of the Himalayas and with a journal from 2012 I was able to compare my abilities this time. I have worn a heart rate monitor for most of my treks and was happy to see that, while my HR is high, it always is and it was not much different than before. I felt as though I stopped a lot on the climbs but in reality I was only about 10% slower on the uphills and probably just as fast on the downhills. I had a great time and the hospitality of the Sherpa people (Tibetan heritage) was wonderful. I drank fresh boiled milk only minutes from a cow, ate healthy vegetarian food, drank  no alcohol and managed just fine at 2500 meters (just over 7500 feet).

Now I am back in Kathmandu and in an hour Razzu, my good friend and the owner of Samsara Journeys and I will head to the airport to pick up Kath, the first of the group to arrive. Kath is one of my daughter's best friends and it will be fun to introduce her to to Kathmandu~~hmmm Kath/Kathmandu. Tomorrow Dick's sister and her partner Pat arrive from NZ and by Saturday night all 17 adventurers will be here. Tuesday we start our trek to Annapurna Base Camp, another familiar route to me. I never thought I would want to continue to trek in the same places but since breast cancer it is somehow comforting. I also love to introduce others to the magic of Nepal. It continues to be one, if not the poorest countries in Asia but I think that is just one more reason to spend time here~~it can open eyes and hearts to a whole different culture and way of life. We from the west take much for granted. For most of the population of this country, cancer is a death sentence as there is literally no money to pay for treatment let alone surgery.

We will visit a school on Sunday in Bodhinath, where the largest Buddhist stupa in the world is and our group will have a glimpse of what can happen when people come together to take care of very poor children. SMD school is a non profit that educates 800 students, 600 of them boarders. We have been supporting a young girl for two years now and coincidentally, my yoga studio in Vancouver also supports a student at SMD as does Razzu and his family. The world is connected in many ways and with education much can happen.

Enough said, I am so happy to be back here and know how lucky I am in so many ways.

Namaste,

Marian

A New Year....

Yes, it is 2014 and already February. Today is my son Steven's 25th birthday and it occurred to me that I may not be around in another quarter century to celebrate his 50th. But I don't see that as a scary thought, but rather as reality. There is often discussion with my breast cancer buddies about recurrence and how we feel about it. I feared it mightily last summer and into the fall. But now I feel more at peace and know that should my cancer recur, I will deal with it then and not worry unnecessarily about it now. I try to live each day with the knowledge that I am lucky to be alive and often the smallest things make me realize how true this is. Snowdrops about to bloom, our chicken Fluffy laying her first eggs this week~~these are all wondrous things. I talked on Skype Friday to my daughter Mary who is living an adventurous life in Turkey. She plans to cross into Iraq this week to return to Turkey with a new passport and this might have in the past, concerned me but now I know I have no need to worry~~she will be fine. It is out of my hands.

It has been a long 18 months since my diagnosis and much has happened in that time. My reconstruction surgery did take place Dec. 6 and though it was seemingly successful, it took a toll on me and it was weeks before I felt semi-normal. Another anesthetic, more recovery, more physiotherapy, adjustment to a "foob" or fake boob as well as to an augment on my "real" breast. The reality that I will never have feeling in that foob nor in much of my right arm and underarm is not all that easy to assimilate. But gradually, the pain and tightness has receded and as always, I will adjust to another new normal.

Christmas Eve, Steven and I flew to Toronto and then on to Barbados to meet my husband Dick and son Andy who had just successfully crossed the Atlantic in our catamaran Van Kedisi. Though it seemed to everyone else that I was lucky to escape winter in Canada and spend time with my family, it was initially super challenging as I felt terrible and movement was not easy, especially climbing in and out of our dinghy and moving around in a constantly swaying space. But gradually I started to feel better and even snorkeled one day from the dinghy on a couple of wrecks in the bay. That day I was able to laugh at myself as it took all 3 guys to haul me back in the boat as I honestly could not pull myself out with the still very sore surgical sites.

We had some very challenging sailing over a week from Barbados to Antigua and I was glad that I was just a "passenger" in high winds, squalls and big seas. I felt vulnerable and at times intimidated by it all but my guys were impressed that I was even there! By the third week I started to feel myself and was able to swim often and enjoy the warmth and newness of the Caribbean.

I  have been back home for 10 days and with a departure for Nepal March 6, my focus is on walking and yoga daily. I had hoped to snowshoe but the west coast has been blessed with little snow so far. My goal for the past several months has been trekking in Nepal and though I suspect I will be slow, I know I can do it. I will do a week long trek on my own with a guide/porter so once my group arrives I should be fit and ready for the Annapurnas. There was so much interest in this Nepal adventure that I ended up with a wait-list and so another trip is planned for October should anyone be interested.

http://samsarajourneys.com/fixed_departure_adventure_nepal_fall.php

Trekking in Nepal just two months before my diagnosis I am sure was what gave me strength during the worst times in treatment and now that I am going back, I feel that strength returning.

There are always silver linings no matter how desperate things seem. My good friend David Greer, who coincidentally was a crew member on the Atlantic crossing, heard about a scholarship program for breast cancer women. He wrote a very moving essay in support of me receiving one of these 8 scholarships and lo and behold, I was one of those chosen. At the end of May I will join 7 other women who have had breast cancer in a yoga/horse retreat. Truly a silver lining!

http://www.bigskyyogaretreats.com/cowgirlcancer.html

I love this family photo even though Mary is missing. Steven and Andy are growing their hair long enough to donate to our cancer agency for use in wigs for women who have also lost their hair due to chemotherapy. The other photo was taken in a bay in Martinique. I had been left alone on board while the guys checked us out NY's day and it was one of the few times I felt afraid~~the winds were very high and the boat was swinging wildly and my fear was that we would drag anchor and I would not remember what to do. Of course nothing happened and it was a beautiful NY's day sailing along the coast of Martinique.

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!

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.

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!

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.