Saturday, March 9, 2019

LIFE IS PRETTY GOOD


Much thought goes into the beginning of a blog post for me and it usually there has been a reason for reasons for me to want to speak up. In the 7+ years since my first breast cancer diagnosis the roller coaster analogy is never ending though the ups and downs do have those plateaus where you catch your breath or the ride comes to and end. Unlike the roller coaster, once we are faced with metastatic cancer, stage IV or simply cancer that will never be cured, it is difficult to banish thoughts of what's next or how long do I have along with facing the necessary details like wills and end of life plans. Of course we all have to face these things but somehow having metastatic cancer can make it more imminent.

Back to the purpose here. Christmas came and went and was wonderful. Soon after everyone returned to school I fell back into a trap that happens once in a while. When this happens I find myself wanting to know more about my stupid tumour or the blob as I often refer it as. No matter how unreal it is, I want to think that there must be some way to attack and release the tumour. In early January I saw my family doctor who was sympathetic and sent me off to a plastic surgeon that I had seen before. But of course she said again that there is nothing that can be done. She had sent me last year to the best team in terms of surgery but once they saw the scans they said it was hopeless. I guess I buried it in my mind and had to hear it one more time. I cried a few tears, went home and called M.D. Anderson in Houston, Texas one of the two preeminent cancer centres in North America. After several telephone calls I was sent a package. If I wanted to have my case looked at by an assessment team I needed to send every single scan from the beginning plus just about every document also from the beginning. The cost of the team looking at my case would be US$16,000 to 32,000. We had called our insurance company and they would have paid for the second opinion. It only took me about 24 hours to think it through and know that it was really not worthwhile. The plastic surgeon also gave me names of two doctors in North America one in Toronto and the other in St. Louis who do brachial plexus surgery. I have pondered making phone calls but the reality is that no one will touch a tumour  entangled around the neurovascular bundle of the brachial plexus. Chances would be good for bleeding to death or losing all control of my arm. My oncologist says it is very common for patients to go back every once in a while try and find a way to make it all better.

Once I got over those few days in January my positive self emerged and I started yoga, exercise and meditation classes at Inspire Health again and decided to get some counselling. It is helping.

Here is a little excerpt from my journal which I planned to add to this post.

Sunday March 3, 2:17 PM lying in bed feeling very weak and suddenly a bit afraid. This is going into a  blog post but I will try to encapsulate my feelings around my health and how it has been for the last couple of weeks. The brachial plexus infusion which was nine days ago has done nothing in my estimation. I am feeling more pain now. Scary again.

So what are the things that are of concern with my metastatic breast cancer right now?

Continuing pain which is manageable as always with narcotics. So not a big deal? Yes or no? It depends on the situation and the timing.

Mental status. This one goes up and down and sometimes on an hourly basis or worse. But also it can be brought it on after several months of seeming normalcy.

Activity level. This one is very difficult to describe. I am sick right now well into week 2 on a cold and cough very productive with green phlegm. I feel as weak as I have ever felt well maybe not as weak as when I needed blood transfusions. But this is a weakness that I do not like but am getting used to at this point I guess.

Scaredy-cat level is at one of the more highs than usual.

March 9th, 2019. I had an MRI last Saturday night and I had a CT scan Tuesday morning along with the usual bloodwork and then chemotherapy on Thursday morning, the third Thursday in a row. Along with Paclitaxel I get Dexamethasone which is a steroid to ward off any allergic affects of the chemo drug. Mary was in a session called "Tremendous Trees" that was part of Ideafest at UVic this week and one of the things she learned is that Taxol drugs (Paclitaxel being one of the Taxols) originally came from the yew tree. That was kind of a fun trivia fact I was aware of, having had Taxol back in 2012 but it was interesting that she learned about it from a session on tree research. Hey this is one of the positives of having breast cancer~~ we learn a lot. I must add that allergic reactions come from the fillers used, not the Taxols themselves.

Back to chemo day. Then I get Benadryl, another allergenic drug along with Ranitidine in case of nausea. The dexamethasone and the Benadryl fight each other so I feel wired but tired. Usually I come home feeling a bit weird but also energetic. This week not long after chemotherapy I decided to do some pruning in the garden after Dick and I had gone for a walk. I pruned my way up to the road and tried to get up from a sitting position. However with only one arm/hand working and weak legs I managed to throw myself onto the roadway. Tripping and falling have become quite common no doubt due to medications, chemotherapy and stupidity on my part. Icing, Ibuprofen and bedrest seemed to do the trick and gave me time to work on fundraising for today's event.

That was Thursday afternoon and today as many of you know I walked 5 km with my special little team called "Breast Cancer Eh?" Dick, our daughter Mary and her partner David joined me on Inspire Health's major fundraiser of the year. Inspire Health provides cancer patients many resources such as counselling, yoga, individual exercise routines, nutrition planning and more. All of this is free with money coming from a grant and this big fundraiser today.

It was only Wednesday while lying in bed that I decided to form a team and get the word out to my friends all over the world. The response was heartwarming. Today was a beautiful day in Victoria, relatively warm (6C) with no wind and I actually managed to walk the 5K, something I did not think I could do. I have to throw in the fact that we came 5th in team donations.

I have left the best for last. My oncologist phoned late yesterday afternoon with good news. Both the MRI and a CT scan appear to show stability with no signs of progression.

Maybe there is another trek in me yet but I have a long way to go on strength and balance. For sure I am feeling positive.

Love to you all,

Marian

  


Relaxing on Dean and Marie's catamaran in the Bahamas in February.




Dick, me, Mary, David and Franny the pug today at the end of the inspire Health 5K walk.



Saturday, December 22, 2018

CHRISTMAS 2018

With only a few days until Christmas I am feeling a mixture of happiness and excitement along with  a bit of of nervousness. I have written in the past about Christmas not being my favourite holiday. However my first Christmas with breast cancer in 2012 was one of the best. Two families got together in our home in Vancouver and for several days there were up to 13 people celebrating with good food, wine and company. Although my taste buds made everything taste like cardboard, including good wine, it was the companionship that made that holiday so much fun.

This year our kids and their partners along with a nine-year-old are now gathering. Christmas Eve we head for Mount Washington on Vancouver Island for four nights in a spacious townhouse. Everyone is pitching in for meals and all that goes along with that. My main job will be relaxing while trying not to supervise too often. There has been enough snow in the past 10 days for all snow sports. I hope to snowshoe at least once or twice and thankfully the Nordic area is right next to our townhouse and downhill is ski in ski out.

Just two days ago I finished my third IV chemo on my new regime. It is called Paclitaxel, one of the same drugs I had back in 2012/13. This time it is a reduced dosage given every week with a week off. Luckily I get Christmas week off. So far I am feeling good for the most part. I do need to rest and take myself off to quiet spaces when I feel overwhelmed.

The last chemo which was oral caused me hand/foot syndrome which made it painful to walk. One of the trade-offs this time is that I will lose my hair and I may still have some neuropathy in my feet and hands but for now I am okay. I am also hopeful that this chemo may push back the tumour that is wrapped around the neurovascular bundle of the right brachial plexus. I still have intense pain but it is managed.

My next post will be in 2019, 1 1/2 years into metatastic  breast cancer. There have been some rough times in the last while but I feel as though I am entering an upward phase with much hope. My family and friends continue to support me even when I am sad or angry.

I wish everyone a wonderful holiday season no matter where they are or who they are with.

Love Marian




This is my latest hairstyle. In 2012 Mary shaved my hair into a mohawk for fun but it only lasted an hour or so. This time I decided to have more fun with it and until it starts to fall out I will sport this mohawk, colours and all.


Sunday, September 30, 2018

PROGRESSION AND HOW IT IS AFFECTING ME.

After writing several posts without publishing I am hoping that I  can form the words I want to in order to explain my hesitation. When I last posted I it was about the main events that can cause stress in our lives. That post spoke about how the move created stress in our lives.

The second stressor for us falls into the category of a "major illness or injury" When we/I bought our Victoria home in January, 2017 with possession in June I  had no idea that I already had metastatic breast cancer. We took possession June 20th and I returned to Vancouver on June 25th for removal of my implants. I really did think the problems I had had with my reconstruction much earlier and then with the second try for reconstruction in December, 2016 were part of the problem. Not so and two months later I was diagnosed with metastatic breast cancer. Fast forward one year and that metastatic cancer has progressed.

I feel lucky that this progression was found. The reporting of an MRI I had in June during my stay at the Victoria hospice for pain management showed stability. Fortunately my wonderful oncologist sent  the June MRI for review by the wonderful head radiologist in the Vancouver cancer agency. He had followed my testing last summer and also did the core biopsy which led to the diagnosis of metastatic cancer. With both MRIs, he was able to compare this new one with the diagnostic one from last year. Sadly it showed a lot of progression as well as some hot spots.

Last week I had a full bone scan and tomorrow I have a CT scan. In November I will have another MRI. Of course I hope that there is no change. The day after we knew there was progression, I was taken off the wonder drug Ibrance. Its purpose was to stop the multiplication of cells. After one year on Ibrance I am now on chemotherapy.

By the time the progression was found the pain had become excruciating despite a change to methadone. I have another narcotic for breakthrough pain and I would often find myself taking it five or six times a day. While I was in hospice I had a consult with an anesthetist who specializes in nerve blocks. I have had two Stellate Ganglion blocks so far and my pain has decreased significantly. However it is short acting so it must be done every 2 to 3 weeks. I am hoping for a block that is more invasive but is long term. My doctor has started the application process but it is very expensive and must be approved by the cancer agency and it is dependent on their funding. Also they must find me to be credible candidate.

I have no use in  my right hand and gradually the action in my wrist is diminishing too. One of the side effects of the chemotherapy affect the extremities and as I understand it, the toxins pool there. The bottom of my feet are bright red and painful but with the help of another woman in my metastatic support group at the cancer agency, I got ahead of it before any cracks or blistering occurred. I soak my feet several times a day in lukewarm water and apply a special cream that my friend brought me. Unfortunately it has affected my left hand and I have painful cracks appearing under my nail beds.

These side effects are more annoying than anything else but they make me feel useless and everything takes twice as long. However as in most of you know, I am not one to give up and I am often as busy as I was before.

This second stressor of a major illness has created frustration for me and I do wonder what is next. I know that I am not always easy to live with and it is difficult for both of us. I need more help which is hard to ask for as I have always been independent, again something that most of you know about me. Dick is not captain of this ship, but for five years he has been in sole charge of our catamaran Van Kedisi, often for several months at a time. Now that he and the boat are home I think it is hard for him, especially as he would have preferred to live in our old house in Vancouver. To come home  to Victoria to a house that he did not choose has been very stressful for both of us. He keeps saying that this transition will take time and maybe years in fact but for me, I do not know if I will be around when he finally settles here.

Metastatic breast cancer is different than breast cancer where we can hear that we are NED or no evidence of disease. The best that those of us who have metastatic breast  cancer can hear is NEAD or no evidence of active disease.  I am not at that point and I do believe that I will live for many years.  However It would be easier to live with my cancer with both of us on the same team. On a positive note, I do feel that it is possible but it has been important for me to write this post even though it has gone through several iterations.

Below, I have added some photos of our wonderful family and friends. For the most part as you can see we had a wonderful summer. If I find a computer friend soon I will put the photos into a better scenario and also add names. Meanwhile, it is fall and fall is my favourite season. I wish you all a wonderful fall too.





Our son Steven and his partner Heidi.


Patti and Lyle with us on an overnighter on VK.


Our good buddy Suzanne on VK~~she crossed the Salish Sea with Dick at the end.



Honeymooners Kath/Alan and our daughter Mary and her partner David with me on Saturna Is.


Honeymooners with Dick on VK.


Our wonderful friends Fred and Shelley who I have known for 40 years!

A selfie with the most amazing farmer I know.


I  cannot say enough about the cats of our lives, Flobi and Jake.


Elaine and me~~so lucky to have her in my life.


Steven and Heidi with me.



With super sailors Jane and Russell who we have known since our kids were toddlers.



Jana not long before twins June and Iona were born with old Saudi friends Marie and Dean.
Dean sailed the last leg on VK and Marie flew to meet the crew from Wisconsin.
She also sailed legs on VK.


Captain Dick on Saltspring Island 4 days after he made landfall in Victoria.


My wonderful yoga/hiking buddies from Vancouver. They came to Victoria for a 3 day reunion.
From left at the back~~Brenda, Wendy W and Wendy H.
Front row~~Claudette, Marian, Mary and Diane.











Tuesday, August 7, 2018

TRANSITION

This post was started several weeks ago but not completed.  I had just started writing again about the second major stressor in our lives when summer sailing with Dick again delayed it. Somehow I pushed the publish button without realizing it. When a friend emailed me yesterday about its contents I was surprised of course, especially because where it left off,  readers may have misunderstood. My apologies to any of you who read the unfinished blog post. I could have simply deleted it but feel that it is better completed.


Many blog posts have been written in my head since I last wrote. The past 14 months have been a period of transition. I like to think that I handle change well and so I expect others to do the same. Looking back, even before June of last year transition had begun. Before I explain this transition I want to talk about stress. We all know that there are some important events in life that create more stress than others.

The top five most stressful life events in no particular order include:

  • Death of a loved one
  • Divorce
  • Moving
  • Major illness or injury
  • Job loss

There are other stressful events like marriage or the birth of a child but they are generally considered happy events. Most often, no matter which event we face, with time and/or personal or professional intervention, the stress may ease and in fact resolve.

For us, two of those five life events converged. Who knew back in January, 2017 when I bought our house in Victoria that cancer would reappear in my life soon after we moved? When I say "I" in buying the house rather than we is because Dick was in New Zealand having just crossed the Pacific Ocean from the Caribbean. We had been discussing a move to Victoria since the previous April and Dick had been gone for some months prior to that. Over those months I had not found the house that I thought would suit us but in early January the stars aligned, at least for me and I found the house of my dreams. Looking back, even though Dick agreed via Skype that we could buy the house, his heart was really not in it. Soon after the purchase and well before our move I spent two months in New Zealand with Dick. Near the end of that time the discussion of bringing Van Kedisi home came up. For me, the purchase of the house and the idea that our boat which have been like a family cottage for many years in Turkey would be in British Columbia made me feel the happiest I had felt in a very long time.

Little was I to know that this happiness would be fleeting especially for Dick. It took time for our Vancouver house to sell and that added stress. Yes, another facet of one of those most stressful life events~~moving. But eventually the house did sell. I had never loved that house and for most of our children's lives we did not live in it because we were in Indonesia or Saudi Arabia. However on our return from Saudi Arabia Dick invested hundreds of hours of renovations in it and did a great job. Over those years though I thought that we both had agreed that the work done was cheap and cheerful and that in five years or so we would move. Unfortunately neither of us really understood what we had said and it turns out that Dick's preference would have been to have live there for ever and die in fact in the house  just as Walter next door did. How can two people have been together for decades get it so wrong? And who is to blame?

For those of you who have been following my breast-cancer blog you maybe wondering why I am talking about the sale of our home in Vancouver and our move to Victoria. We now come to the second major life stress~~cancer, and worse~~metastatic breast cancer inoperable and incurable. When I went to Nepal in late April 2017 to lead my last trek, I had no idea that cancer was growing but I knew that I was slower, older and it was time to stop leading treks, thus I called that trek my swan song. I am glad for that as it meant I ended my time working in the Himalaya with Razzu on my own rather than cancer forcing it.

Back to the stressful move. No one knew that a new tumour was insidiously growing~~possibly for as long ago as when the first cancer was detected. Since we did not know when buying our new house and selling the old one that I would find I had metastatic cancer, we'll never know if staying in Vancouver would have been a better option.

Once we had moved in late June of last year it was becoming evident that something was wrong. Surgery had been done to remove my implants and I had hoped the growing pain in my right arm and hand would disappear at the same time. This is old news yes but it fits in with the second stressor, which fits under "major illness or injury." As the summer dragged on, my husband was unhappy and uncommunicative and there was nothing I nor anyone else could do to alleviate his pain. I went back and forth to Vancouver for tests yet we barely talked about the possibility of cancer reappearing. It was a very difficult and lonely time for both of us. When the diagnosis came in late August we were already burdened with such high levels of stress that I am sometimes surprised that we were able to continue on. Looking back, I believe that all the work we had put into our relationship in the preceding few years of living with cancer made the difference. It was not as though a light went on and we went from unhappiness to happiness but we did carry on with the plans that we had made for Dick to return to New Zealand to bring the boat home.

Here, this post ends and the next one will begin with the return of Dick and crew along with yet more difficult news. However,  I am happy to say that enduring more cancer and a move has not brought us down and we are well on the way up, readying ourselves for the next chapter of our lives.






Sunday, May 13, 2018

CANCER MADE ME A MORE POSITIVE PERSON

Right at the start of my breast-cancer adventure I ordered two books. One was "The Breast Book" written by Dr. Susan Love. To me it is the Bible of breast cancer and is revised every five years. The second book was "Cancer Made Me a Shallower Person~~A Memoir in Comics" written by Miriam Engelberg."  "Insightful, unflinching and painfully, painfully funny" wrote the Washington Post. Miriam's autobiography by comics takes her from initial breast cancer through metastastic cancer and her writing can make me laugh and cry in the same paragraph. For anyone with any stage of breast cancer I recommend both.

Here it is Mother's Day and  I feel that I am the most blessed mother on earth. How can I not remain positive when I have three amazing children who love me? I cannot say the same for my own relationship with my mother when she was alive so I feel even more fortunate. I was lucky back in my younger days to have had a positive role model. My boyfriend at that time had a mother who taught me so much including a love for life as well as instilling in me, the belief that I am a good and worthwhile person. Parenting is a skill that cannot be taught but when we ourselves receive little or no parenting it is all the more difficult. Again I was fortunate to marry Dick who was a natural father from the start. Now that I know his sister and family so much more, I recognize that they grew up with more warmth and happiness than I. No family is without hidden sides but when one grows up with little or no parenting it is different. 

Back to being a more positive person. I was trying to better define positive and found this:


positive attitude doesn't mean ignoring life's troubles. It just means being an optimist and looking for the good in things, rather than being a pessimist and concentrating on the bad in things. Sometimes your perspective can make all the difference in the world.


I like this and  see how my perspective makes a difference. One of my pharmacists called me this week to discuss a new med but also wanted to tell me how the staff (small group of caring people) love me and my attitude. She said it is like a breath of fresh air when I come in, whether it is for my monthly injections, to pick up prescriptions or to talk through a new drug and its possible effects. There is always coffee if I want it and two easy chairs to sit in while we talk and sometimes one of the two owner's dog is visiting too. How can I not enjoy a visit? 

My whole cancer team appreciates my ability to try new things always with hope. This is not incidental. I have changed both oncologist and pain doctors because I did not feel the way I do~~yes I have incurable cancer but that does not mean that I should be part of a team that lacks hope and humour along with the willingness to go outside the box. Now I do  feel a more positive energy when I enter BCCA.

Day to day activities often include conversation about the lack of use of my right hand and I try to make it upbeat and again this allows for positive exchanges. My daughter says I am a "people person" and she is right. Mary now checks in on her extrovert mom often. Since my fall that required stiches and my black and blue face scared children (sort of a joke) I have wanted and perhaps needed the exchanges.

I was a nurse albeit not for long, but I loved the back and forth of nurse/patient interaction. I hope to become a hospice volunteer and take a course in the fall. Luckily (haha) I will soon experience hospice care from the inside as my pain doctor wants to admit me for up to a week in an attempt to work out a pain regime. The nerve pain has increased and we have tried many levels of pain relief. One possibility is a lidocaine infusion and that definitely needs to be done under supervision at the hospice. We shall see.

This is what my youngest son Andy said on messenger about the lidocaine. "And are you doing the lidocaine infusion? That is pretty awesome and probably very nice to hear! You’re a pretty badass lady mom!"

Through the grapevine I heard that my older son has said." I am his rock." Whether he said or not is not important~~ I believe it to be true.

My friends contain to be supportive and also tell me how positive I am. Sitting here on my deck this morning with a Nespresso coffee (one of the delights of my life) it is almost impossible to say how happy and positive I feel. I am grateful for so much. By July only a few weeks from now, Dick, Steven and Heidi and Maurie will be here having sailed across the Pacific. What a positive for both Dick, our kids and all the crew that helped in the voyage of the Van Kedisi. The catamaran that was our summer cottage as our kids grew up in the Middle East will now be our cottage in British Columbia.  A one-handed deckhand won't be very useful but I will be a very happy and positive member of the sailing team.

I do need to say life is not always happy and rosy and positive. One year ago I was trekking in Nepal with a wonderful group of friends. it is hard now to believe I was able to manage that last trek. Yes I am grateful for it but my heart still hurts knowing that it really is beyond my abilities now to trek in Nepal. My positive spirit has enabled many people to go far beyond their comfort levels trekking in the Himalaya and that has added to my own happiness.

The times that my blood work goes so low that I have to take breaks from the cancer drug that is keeping my tumor at bay can bring me to despair but the support I have from my family and friends always brings me back. Becoming one-handed can frustrate me but also delight me when I find a new way. Typing one-handed or with dictation both come with annoyances but again, I am working it out. 

To all those who say I am a positive person I thank you and today acknowledge it. Cancer has made me a more positve person.

Thank you my friends.

Much love and happiness,

Marian




Puffed up with pride was my Laila and her babies. Happy Mothers' Day.






Thursday, April 12, 2018

CAN YOU TEACH AN OLD DOG NEW TRICKS?


These sayings just represent what some people believe is true of most older people. As you'll learn, though, old dogs certainly can be taught new tricksThese sayings just represent what some people believe is true of most older people. As you'll learn, though, old dogs certainly can be taught new tricks. ... However, with patience and a motivated learner, older people and animals canindeed learn to do anything a youngster can do. 

There is no denying it~~adapting to new ways is more difficult for me now as I close in on my 70th year. Not only am I ageing but the many drugs taken in the past few years, including chemotherapy and more recently Ibrance, Faslodex and opioids along with other test drugs related to nerve pain, affect me physically, mentally and emotionally. Ibrance is an immunotherapy anti breast cancer medication which causes fatigue, Faslodex works with Ibrance on a hormonal level, opioids are for relief of the intense nerve pain this recent cancer has caused~~all of this has been an onslaught for me.  Almost a year ago I departed for Nepal with a bad knee, having thrown it out the night before. l was annoyed but having had a bum knee for years, it was not the end of the world and I always left for treks several days early both to acclimatize but also to make sure I was fit last minute. En route I developed lymphedema even while wearing my compression sleeve. My knee improved and the swelling in my hand went down and I had a job to do working with our team to provide a "trip of a lifetime"   Since showers are few and far ?, I honestly did not notice that the lymphedema in my arm had never resolved. A month later, once home in Vancouver the symptoms of lymphedema continued but the pain from tingling, burning and throbbing increased. The blog posts since then have described my treatment since then, treatment not really being for lymphedema, but in fact an aggressive cancer.

My last post was over two months ago and since then there has been a rapid deterioration in the use of my right hand. I am one who is considered to be dominantly right handed and with ageing and medications, it has been struggle to adapt even to activities of daily living using my left hand. I still have the use of my right thumb but the latest seems to be that I will lose that too just as I did my pointer finger a couple of weeks ago.

I was in NZ mid February to mid March and it was a wonderful 4 weeks with family in NZ and friends from Canada. I cannot say enough about how well I was taken care of while we had so much fun, mainly in the Northland and including some good sailing with friends for almost a week then 3 perfect days with just Dick as we made our way north from islands near Auckland to Whangarei. Dick's sister Claire and partner Pat know our friends from Canada (Claire and Pat trekked with mainly Canadian friends to Annapurna Base Camp in 2014 so there was a mini reunion too. My 69th birthday took place at Pat's 70th birthday and what a party it was!

It was 4 weeks away from medical appointments other than my Faslodex injections administered by an ICU RN who had not done an IM injection for 15 years. Life is an adventure and getting my IM drugs the day before my birthday was just part of it.

My return March 10th went well and I had a few more days with my sister Kathryn and her husband Wilf who house/cat sat while I was gone. We had a good time which was in addition to a week together before I left. Not sure the weather in Victoria was much better than NS where they live but they claim they enjoyed it. I do know our cats were spoiled but provided great companionship according to Kathryn and Wilf. My return also included the very sad but meaningful celebration of life for our friend with CJD. Hundreds of us gathered in Vancouver to mourn but celebrate his amazing life of strength, teaching, generosity and much more. He has inspired me in many ways and when I am down or whiny, his strength comes forth yet again to tell me to keep going no matter the hurdles.

I have hoped for a different scenario than the one I left in February but sadly it is not to be. Mid March I could still tie shoelaces and use my right thumb and pointer finger. Now only my thumb works. I suggest you try using only your non dominant hand to do everything for even a few minutes but preferably an hour or more. Add intense nerve pain (helped immeasurably by opioids) and you will find that it is quite a chore. But I am still pretty happy and despite the time filled with appointments with massage therapists (one for lymphedema and one for fascial release on my chest wall), monthly visits with my oncologist along with blood work just prior, GP appointments and more. I have seen two plastic surgeons in the past month, one for a post op checkup (surgery last June) and another Tuesday to see a team~~plastic surgeon and physiatrist who work with nerves. Sadly they had nothing to offer me and I could tell that they genuinely wanted to. I am to be referred to another specialist who does nerve blocks so there is another avenue of hope.

The most recent medication prescribed by my pain doctor at the cancer agency is Nortriptylene. Previously I tried Lyrica also called Pregabalin which works for 1/8. Poor odds and the new one is 1/2. That is not me and I am currently weaning off it. I did see a GP who specializes in Medical Marijuana and I have just started an oil twice a day, very low dose. I am impressed by the company who provides my oil and they have 24/7 phone help. I will gradually increase the dosage but for now I cannot feel any effect.

Despite these trials and tribulations, life is good and friends/family far and near are close via phone calls, emails, Skype and FaceTime, not to mention good friends who have been immensely helpful right here in Victoria. Via a Facebook group called Oak Bay Local, I have hired a lovely young nursing student who has really improved my quality of life! She will also be helping me with some secretarial work and deck gardening. Spring is rumoured to be around the corner and I am slowly stating back walking. I believe the Nortriptylene made my balance worse. I had a fall Easter Monday and thankfully my neighbour was able to take me to ER for stitches. I still look like I lost the fight but it made me more careful and has been part of the reason  I am weaning off the drug.

Adding to my happiness is the fact that Dick, first mate Maurie (a buddy from engineering school) and our older son Steven and his lovely Australian girlfriend Heidi will soon set sail from Tahiti heading for Hawaii and ultimately Victoria. I will also be posting for him on his blog set up years ago my another good friend who sailed the Atlantic leg in 2013. The link for that blog is:

https://sailvankedisi.wordpress.com
On that blog there is a button you can press~~"follow" and you will receive an email any time there is a new post. I think there is also a link to my blog and another that shows you where Van Kedisi is.

One of the greatest blessings this past year is Edie, granddaughter of an old friend who I spent many hours with as she endured chemotherapy for metastatic breast cancer. Being flexible has meant that I have Edie sometimes once or twice a week then not for weeks. She will be here next week when Andy and Mary will also be visiting.

Now Friday, April 13th and I have added and labelled photos.

Love to you all!


My 69th birthday at Claire and Pat's in NZ.



Being presented to Queen Elizabeth on my birthday.


Dick and Suzanne in NZ


Dick, me, a friend, Suzanne and Sarah Roe (who provided awesome accommodation near Dargaville.



Sailing in NZ


Leighton family reunion on the Fleming farm~~2nd cousins of Dick.


Heidi, me and Steven



Shelley, Fred and Grady Galloway on a recent visit to Victoria


Yes, I am still fighting the battle against a Texas pipeline company!


Marian and Elaine on a lovely day last month in Vancouver.

Yet another G&T on VK~~Patti looks happy!


Van Kedisi Crew Maurie, Dick, Steven and Heidi





Beautiful NZ Kereru (pigeon)



Van Kedisi being loaded on a huge ship for transport to Tahiti.



Little Edie smelling the flowers and the Celebration of Life program for our dear friend who will continue to be an inspiration in my life.


Love to everyone 










Thursday, February 1, 2018

CANCER COMMUNICATION AND CHANGES IN DAILY LIVING

My usual opus memorandum for blog posts is to think about what I want to say over a few days with the intention of actually writing about those thoughts. What usually then happens is that my brain is so full that I end up writing a stream of thoughts which does allows me to winnow out what I really want to say. The writing is important to me~~even though I keep a journal, writing these posts becomes a barometer of sorts on my cancer and its effects over time.

For years after my first breast cancer diagnosis, I felt there was a monkey on my back. This common term has several meanings but for me, once I knew I had recurred, I felt that the monkey had gone. Not so, as the truth of the matter is that that little guy will always be with me unless I come to terms with not knowing what is next~~next being growth of my tumour or metastases in other parts of my body or ultimately death directly caused by breast cancer.

The last week or so has been very difficult as I approach the six month mark since diagnosis.

I have still not accepted the fact that I have minimal use in my right hand. Finding a good knife has been on my list for ages (not for stabbing Walkers from "Walking Dead" though I think if I had full use of my hand I could easily kill a walker, having binge watched several seasons in recent months) thinking that it would make it way easier to cut things when cooking. I went to House of Knives on Sunday and the nice young man explained and showed me how it makes no difference what kind of knife it is~~you have to have fingers along with the thumb to cut properly. "Activities of daily living" are impacted  and I am lucky to be retired since it takes twice as long to do anything. I encourage you to spend some time using only your non dominant hand. Dressing, from pulling on socks to buttoning pants and shirts to using zippers~~each activity requires some fumbling to accomplish it. I have been unable to turn a key whether it be for a door or a car for months. Try flossing your teeth with one hand using your dominant thumb and bent forefinger to hold the floss. Cancer stares me in the face every day. With my first go with breast cancer, this was not the case and life went pretty much back to normal.

Those with rheumatoid arthritis have the same difficulties and I empathize with them. I am adjusting and for the most part, feel good when I find an easier way to complete a task. What does worry me is that my tumour will eventually grow. There is that monkey again. Writing this helps me to put it in perspective and slowly work towards a way to prepare.

Also there is the morning pain which always takes time to move beyond once I have taken my long action Oxyneo. I am so blessed to have our cats Flobi and Jake with me. They often work better than my alarm clock (which I still set every night and hit snooze over and over in the morning) because their insistent meowing and purring my my ears does have an effect. They need me to get up and either feed them or let them out if I have locked their cat door. At night they always sleep with me, Jake at the bottom of Dick's side and Flobi usually curled up close beside me.

Most often I have come to think "glass half full" and even this past week when I realized that cooking is no longer easy and so not so much fun, that when Dick gets home from the sailing adventure in the summer, we can make it team work. Most of you know I have tended towards independence especially over the past years with Dick sailing across oceans and me meeting him here and there but mainly keeping up the home front. I was also planning and leading the Nepal treks with my good buddy Razzu. I had my chickens to care for, I loved quilting and was OK for longer periods of time. I really miss Dick though I am so happy that he and his crew of Maurie an engineering mate and Steven and his girlfriend are going to bring Van Kedisi home. Thankfully Dick has made the wise decision to ship VK to Tahiti so none of us have to worry about them sailing thousands of nautical miles in the roaring forties.

Before I end this post, I want to return to the concept of death. When I am thinking rationally the idea of death does not scare me. However this past while, when feeling ill and sad, I did think about the what ifs of it being sooner than later. I am blessed with my immediate family who love me and call me and listen to me when it is not always easy. When I felt I was falling apart a couple of days ago, my wise and wonderful daughter called and I was able to articulate through tears, some of my recent thoughts. Loving family and friends and being loved by them is the ultimate goal in life and when we are gone there will still be memories. I am not ready yet and that was my fear. I want to leave more positive memories in ways I am not sure about yet. We will all die some day and I can only hope that I can live up to a couple of things I thought about over the New Year. Kindness and compassion are things that we all desire in our lives and I fail often. No matter how long or short my time is, I now have the opportunity to try harder to be kind and caring every day.

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