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