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.

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:

A 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.

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 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 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 

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.

Please click on the follow button on the right if you want to automatically receive posts as they are published. You do have to have a Google account I think, or at least you do to add comments.

BREAST CANCER EH? YES AND FOREVER.

It is now one week into 2018 and this will be my first post of the year, a year that I look forward to. The days are already getting longer which is a bonus for me especially when what I call sleepathons reappear every month. Towards the end of each cycle of Ibrance, fatigue inevitably hits and I am thankful that I do not have to work or get up early in the morning. Setting my alarm wakes me up but only long to hit the snooze button and eventually turn the alarm off. The cats get me up, but only long enough to feed them and open their door. Nine hours of sleep becomes 10 11 or 12 as it was today. However by the end of this week I will have had time off the wonder drug Ibrance and the cycle will start again.

Over the New Year's holidays I spent five nights in Vancouver couch surfing, albeit with good friends.  I was there to spend time with friends we have known for decades but in recent years have grown closer to. Travelling and trekking together can do that to you~~ sleeping in tents in the high Himalaya, touring in Indian buses through Rajasthan, hiking in the rain in Haida Gwaii, this intimate time together can make or break friendships I think. However in this case our friendships have only grown stronger. Having metatastic cancer is no picnic but what our friends are going through pales in comparison. Our friend has been diagnosed with CJD, or Creutzfeldt-Jakob disease and his wife is suffering along with him if not more. It is a rare degenerative and invariably fatal brain disorder that affects about one in a million world wide. Because it is so difficult to diagnose much time has been  taken to find out what has dramatically changed a strong, intelligent and caring man and I wanted to spend time with him and his family before the inevitable will happen. To me this is a tragedy and despite the support of family and friends it is indescribably sad.

It had not been I my intention to write about our friends in this post but something compelled me to do so. Being diagnosed with breast cancer twice in five years pales in comparison to what the disease CJD does. Friends and family rally around and we will continue to do so.

My intention is still to give an update and there will be some humour in it~~at least I hope so. I continue to mess around with pain management. I asked for and got a new pain doctor at the cancer agency because I felt that the previous doctor and I were not on the same page. Just before Christmas I saw the new doctor and she was receptive to what I have been considering. My tumour remains stable, at least it did at the last CT scan. The scan will be repeated in March. Meanwhile the the nerve pain continues predominately in my hand but when I have those sleepathons and miss the timing for my pain meds, I know that the pain is still in my arm and shoulder. Opioids will be in my arsenal for the foreseeable future but I hope to use medical marijuana as a co-analgesic. I am just at the beginning of the experimental phase of this. Apparently for nerve pain CBD's alone will not do the trick and some THC needs to be included. Ingesting pot via tinctures or sprays takes time to go through the system and I have found so far that it is inadequate.

During my time with the friends over New Year's I had discussion with one of the sons-in-law about smoking dope. He gave me a little bottle of homegrown and we discussed vaporizing versus smoking which I do not want to do. I bought a vaporizer a couple of days ago and unfortunately had no teachers here. I wish I had a video of me watching YouTube videos for my particular device. In most cases the presenter appeared to be stoned himself. I laughed out loud watching one reviewer completely panning my vaporizer with the second video later when he was not so stoned saying it was actually a good device. With the vaporizer I also bought 3.5 grams of Medi-Haze and probably wasted some while thinking there had to be some smoke. Once I figured out how to use it, I inhaled some of the vapor late in the evening the last two nights. Maybe it was because I was by myself, but I did not feel the anxiety that smoking dope has always created even when I was a hippie decades ago. I slept well both nights and to be honest I think that it did help with pain. Here is the link to the YouTube video I referred to. It did make me LOL.

https://www.youtube.com/watch?v=RgrWd46DjV8&t=5s


The night I bought the vaporizer but before I had experimented with it, I got an email from the  dad of one of my kids friends, explaining that he had intractable pain and his daughter thought maybe I could help. Well, I just may be able to but he will have to go also for the first time go to a pot shop. Thankfully marijuana will be legal in July of this year in Canada. Unlike the United States this is a federal initiative. Sadly Jeff Sessions likens marijuana to heroin so those states that it is legal in are now having to rethink. I wonder if his boss has ever smoked marijuana.

On an even lighter note I have a criticism of the new low flow toilets. Those of us on drugs for breast cancer including chemotherapy IV or oral,  plus the pain meds many of us are on, find that they wreak havoc on our bowels. When you plug up the toilet in the middle of the night while coach surfing as I recently did and the plunger is stiff and your right had does not work, what are you to do? I shut the toilet lid, found a piece of paper and a pen and left a beware note. Luckily no one was home when I sneaked out the door the next morning.

That's it for my first post of the year. I hope to be more kind and compassionate this year and to listen more. This second go with cancer has me happier and I am not sure why. I will explore this before my next post.

Happy New Year

Love to you all,

Marian

I continue to oppose Kinder Morgan and was protesting pre-dawn last week. I have the orange parka on.

Christmas Day with Andy, Mary and my niece Reilly and my nephew Jordan

FATIGUE UPDATE PLUS

Learning to live with Ibrance and Faslodex, the big guns used to keep the cancer at bay has not been easy. When Oxycodone, Oxyneo and Lyrica for nerve pain are added to the mix, it is no wonder that some days I have trouble waking up.  Diagnosis was August 22 so it has not even been 4 months yet. The last post was written when I was so tired I had trouble dragging myself out of bed. I forgot to mention that I  had a surgical procedure only a few days before that post. Veins cannot be  accessed on my breast cancer side and those on my "good" side are so difficult to access for blood work and contrast dyes for CT scans that I had a "Power Port" inserted in my chest. This quarter sized device connects to a catheter placed inside a central vein leading to my heart.

Yesterday I had my first blood drawn through the port and all I can say is that I love my port!

Also fairly recently I have added some tinctures, teas and topicals made especially for me by my oldest friend whose expertise I value. Although there is no way to know for certain, I like to think that  these have made a significant difference.

As well, I joined the Compassion Society here in Victoria. It took awhile as I had to get a referral from my doctor but I have now had my interview and discussion re CBD's which was what I was after. Some of you may have read or heard about the value of CBD's, derivatives from marijuana but without the high of THC. Because of the illegality of marijuana in most parts of the US and Canada, there is little quantitative and qualitative documentation available. Parents of babies and toddlers with epilepsy have been fighting to allow there use of CBD's which seem to show real change in number and length of seizures.

 I was unable to get pure CBD's at the Compassion Society so with the advice of a friend, I searched the site she gave me online and  found a retail outlet in Victoria that sells it. Monday I joined a Victoria "pot shop" and found what I would consider a professional team who to seemed to understand my needs. So I now have medicinal pot in my arsenal but have yet to experiment with it.

Meanwhile, I am dropping Lyrica after being weaned off it for the past few weeks. Like opioids I am told, there has to be a gradual process in lowering dosages. I have also decreased the amount of Oxyneo I take twice daily and have rarely needed my breakthrough Oxycodone this past week.

Yesterday Andy came with me as official note-taker to my monthly oncologist visit. My blood work was great and Saturday I start round 5 of Ibrance and Faslodex! I am a believer in the high tech cancer drugs but also in the meds made by my friend. In the previous month my neutrophils were so low that I had to take a few days break from Ibrance. My energy is higher and I knew even before the blood results yesterday, that they would be acceptable. My oncologist also emphasized yet again that despite what he considers permanent nerve damage, that I can expect to be around for years to come.

Apart from the drug front, there is more to announce but that is for the next post. Suffice it to say that I  am working with a physio, a hand clinic, Inspire Health (a British Columbia non profit with the goal of improving life for those with cancer), yoga and more. I have moments when I find tears unexpectedly falling down my cheeks  but it is not necessarily because of my own cancer but also because I have friends who are facing more imminent and difficult times in their lives right now. There is much fragility in life and perhaps because I am a "senior" as are many of my friends and we find ourselves facing situations none of us would have thought of a decade ago.

This newest adventure in my life comes with the knowledge that it has actually opened my eyes to opportunities to interact with others in a more positive way just by the way I live my daily life. The ongoing climate change and often disappointing political decisions are with us and I am still planning to battle Kinder Morgan. My motto of "over my dead body" can now be taken with with some dark humour. I will be in front of the bulldozers should that need arise though I can only hope that we who oppose the pipeline will prevail.

Love to you all. If you want to be reminded of my posts as they cone, press the "follow" button on the top right of your screen.

Marian

FATIGUE AND ITS SIDE EFFECTS (on me)

Waking today from yet another marathon sleep of 12+ hours was not a happy moment. For some who are exhausted from legitimate work, exercise or lack of sleep to number a few causes, sleeping "away the day" could be a good thing. For me, it was not a good feeling. Having my first shower since Wednesday AM (reason for this further along) made me feel good temporarily but it was brief. I fed the cats and filled the bird feeders and took my pills meant for 0800 instead or 1300 and then contemplated the day. Looking around, I swore I would file the endless medical reports, change my sheets, return the many library books that have spirited their way home but remain unread or go for a long walk since it is not raining and maybe even think of something exciting to cook for dinner. Breakfast and lunch has been peanut butter and toast along with a big glass of milk plus a Nespresso. This seemed a healthy start to what can only be a short day. I have now reheated my coffee more than once while going through a myriad of emotions and as I type, sadness overflows into tears that do not often spill. So what is causing this fatigue that I may have to learn to live with? 

Definition of fatigue:

extreme tiredness, typically resulting from mental or physical exertion or illness.

"he was nearly dead with fatigue"

tiredness, weariness, sleepiness, drowsiness, exhaustion, enervation, languor, lethargy, torpor, prostration; war-weariness "his body was slumped from fatigue" Darkness has now fallen and the only thing accomplished was a walk to the beach just before sunset. I had not forgotten this blog post but the walk was much needed. I am an extrovert by nature but I also feel the need to retreat at times when retreat is really not healthy. Of course the fact that the sun was shining and people were also out appreciating a break in the rain seemed to allow for friendly conversation here and there.  Back to fatigue which has lad me today also to ponder the meaning of fatigues, naturally coming from the word fatigue and it occurs to me that this word "fatigue" originally  comes from war and the terrible exhaustion of battle. In the 1770's, fatigues meant "extra duties of a soldier," from fatigue, or tiredness. It came to also mean "military clothing" in the mid-1880's I wonder if it can from the French word "fatige." how does one type an acute "e?" Then the Turkish word for tired came to mind~~for some reason that word which is "yorgun" was also dredged up. It must be that I  used yorgun often when we spent our summers in Turkey. It was maybe because our kids were little and at night when Turkish kids were still full of life, ours were "cok yorgunlar." While checking out the correctness (mine is not) I found this. More fun ahead.  A Turkish Folktale: The Art of Behet Mahir https://books.google.ca/books?isbn=131777728X Warren S. Walker, ‎Carl Lindahl - 2014 - ‎Literary Criticism That shout was both a battle cry and an expression of Hamzai's great fatigue. After seventeen years of pursuit, he was so tired that his mother's milk ran out of his nose.146. If I were to tell you about all of the difficulties he had encountered during those seventeen years, this story could not be completed in less than a year.  Tomorrow's post will actually be what I think is causing fatigue. Cancer can be fun. Learning how to blog and figure out how to change fonts etc.~~less so. If I work it out I will fix it in this post but now before fatigue gets me again~~time for dinner. Please note that if I have not bored to sleep as opposed to fatigue then there is a way to read my blog posts as they occur.  There is a FOLLOW button just below the followers. Sadly you do have to have a Google account (i.e. gmail) to follow me or make comments good or bad. Namaste, Marian