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

MBC~~METATASTIC BREAST CANCER

I have joined a new club and it is yet another that I have no interest in. i noticed that I got tenses wrong in one of the last posts. My first tendency was to "edit" but chose not to because I saw that they were past tenses and perhaps I needed to write it like that. But I am clearly in the present with MBC. The last couple of months have been so busy with countless appointments that it is hard to go through even an hour without remembering that I have cancer and this time it is not going away.

But life goes on and it is good with lots to look forward to as well.  Dick left for NZ almost two weeks ago and is working on VK while staying with Claire and Pat. I already have my ticket and will spend 4 weeks in NZ mid Feb. to mid March along with good friends who go at the same time. More sailing fun ahead! I talked to BCSA security yesterday about bringing pre loaded syringes and ice packs through security at YVR and it seems straight forward.

I love Victoria and our home and the ever changing views though it is not all sunshine and roses. My drug regime makes one of our kitchen counters look like a small pharmacy. The big gun immunotherapy drug Ibrance that I am on 3 weeks out of 4 is hard on my immune system. Last week my white blood cells and neutrophils were so low that my oncologist called to say I had to stop taking the drug for the last few days of my cycle. I still had several appointments in the days prior to the weekend including a CT scan with contrast Friday afternoon. The hospital was so busy that it took much longer than it should have and by the time it was done so was I. I slept 15 hours Friday night.

Tomorrow I see my medical oncologist for the results of the scan and will find out if the palliative radiation and the Ibrance and Faslodex have shrunk my tumour or the blob as I call it. It is actually the blob and its tentacles that are wrapping around the neurovascular bundle in the brachial plexus.

There has been some release of my scapula and the excruciating pain each morning is virtually gone and this occurred 3 days after the radiation ended. Unfortunately my arm and hand have not been so fortunate and I still have very limited use of my right hand. It feels cold all the time and this is due to the blood system along with the nerves not signalling normally. I also have severe lymphedema but in the past week have been treated by a physiotherapist who puts a large sleeve over my arm and hand and for two hours a pump tries to get the lymphatic fluid moving. I have an appointment with a hand clinic next Monday to see what can be done to keep my thumb and fingers from further damage.

Enough for tonight but I did want to get an update out.

Love Marian

Good news~~still metastasized breast cancer but looks like long term treatable.

Although my treatment began immediately after my diagnosis, I did not see my new medical oncologist (MO) until today.  Prior to our move and up to the diagnosis, my team was in Vancouver. Treatment began immediately in Victoria and now my team is here.

Dick and I met with him this afternoon for almost an hour. Dick took notes while the doctor and I went over treatment plans, staging and prognosis. The last one is iffy at best because no one can say for certain but it seems that my cancer is treatable with no imminent death in the cards but rather I have years ahead. Good news for Dick too as the doctor felt there was no reason for him not to go to NZ as planned in November to begin the process of getting a new engine installed in Van Kedisi along with other work needed. He will plan to leave NZ in March to sail home via Tahiti and Hawaii. He was not too happy about the other option of getting VK home by ship at a possible cost of US$50,000! I can go to NZ in February for 3 weeks or so in between drug injections which will be every 28 days. The other drug is oral and is taken 21 days in a row with 7 days off. Maybe I can even meet him in Tahiti in May.

I will be monitored closely but for now we can relax a bit and enjoy our planned trip for a mini Aramco reunion next week. We will spend Thanksgiving north of Terrace with Andy and Mary and we will have time on the Nagata Family Homestead where Dick may even be assigned a project. For anyone who knows Dick, he loves a good project.

The not so good news is that the nerve damage I already have may not disappear. But on the other hand, it should stabilize and not worsen at least for the short term. I am on opioids for the pain it has created so I do hope for some changes. We visited the pain clinic last Friday at BCCA to go over my pain management and for now we do have a plan that is working. Though I did know that opioids work by going to the pain receptors rather than making me high it was good to hear it from  a professional.

We celebrated the good news by going to the Oak Bay Beach Hotel for happy hour. Today also I got to the half way mark for my 8 sessions of palliative radiation.

Cancerland #2~~"Breast Cancer Eh?" morphs to WTF.

Yesterday I decided it was time to post an update after months of procrastination. I had been at least posting annually but this year when that time came I was beginning a summer of uncertainty which covered the period of time from early June to August 22.

2017 had already been a busy year. In December my breast reconstruction that had been causing all kinds of problems like cording and contractures, was redone. In early January I bought a house in Victoria. Though I had been looking since the previous April, one could say this was impromptu but the moment I entered the house, I knew it was for us. After a Skype call with Dick I made the offer on January 7th, went back for inspection January 11th and spent all week getting our Vancouver house in order for listing. Saturday, January 14th, one week after buying our new home, I flew to NZ to spend two months with Dick.

Our house in Vancouver sold March 14, two days after our return. Next was my planned swan song trek to Mustang (real name Lo Manthang) in Nepal with a wonderful group of 12 friends and friends of friends. I had been saying I was ready to retire for 5 or 6 years but I really felt this trek wold be my  last. While flying to Nepal, I developed my first lymphedema ever but was so busy with the trek that I did not really pay much attention. I had also had my right knee go out the night before departure but it always seemed that something unexpected happened on these trips and all would work out. It did work out and was an exciting and memorable trip from beginning to end.

On my return to Vancouver from Nepal in late May I was already scheduled for my 6 monthly cancer checkups as well as a post op visit to my plastic surgeon. We both felt that the latest reconstruction was failing and he agreed to take it all out. Meanwhile we packed and sold stuff and tried to downsize. We moved June 20th with the help of Steven who came home from Australia for a month and he was amazing, not only with the physical challenges of a huge move but I found that his people skills had grown so much. He was able to intervene when tensions ran high as can happen during a move! We had also hired a professional mover and he and his crew were amazing.


June 26th I returned to Vancouver for my surgery and Andy flew down from Terrace to bring me home a few days later. I had hoped that surgery would make some significant pain and nerve issues radiating from my scapula to my right hand disappear but nothing changed and these symptoms of something serious continued and in fact worsened. I was back and forth to Vancouver 6 times over the next few weeks for tests at BCCA and it became evident that the pain and nerve problems were part of something much more sinister than I could imagine.


The wonderful doctor who had followed all my tests at the cancer agency did a core biopsy August 17th and it was evident to me and my friend Suzanne who came in with me, that it was most probably cancer. He gave us both his cards and said to email him after 3-4 business days if I had not heard from my medical oncologist. I told Dick early on day 4 that I would wait until noon to email him, then I said maybe 10 AM and at 0810 I sent him an email. I simply could not wait any longer.

August 22 will be one of those dates that I will always remember. Of course we all have dates/events that are imprinted on our minds and not all involve us. But births, marriages, death and other significant events usually stay with us. My mother used to fax Dick close to our anniversary date so that he would remember. Odd that she not do the same for me! But half an hour after I sent that email,  the doctor called. Yes it was a recurrence of breast cancer. We spoke for a few minutes but he was already late for a meeting and said my oncologist would call.

The next day I impatiently waited for the call and finally left a message asking when this call would take place and soon after, on speaker phone with Mary taking notes, we heard the news. I had known it was probably cancer for awhile but never did I expect what she had to tell us.

My breast cancer recurrence was inoperable and incurable but treatable. A brachial neurovascular nerve bundle was entangled around the tumour on my chest wall thus the inoperable part. I have always felt that for me, there was a high chance of recurrence given the aggressiveness of my original cancer. But to be facing metastatic breast cancer was a big shock for all of us.

We had speaker phone calls with the boys and Mary was with us. This was exactly three weeks ago and I was surprised at how fast the cancer wheels were set in motion. For now though, I want you all  to know how important you are as I move forward in this new adventure. I do look upon it as that and hope to blog for a very long time. It is very difficult to have such uncertainty but as always, I am heading into this latest test with humour which I plan to incorporate into some of the future posts.

Another 3990 meter pass en route to Lo Manthang May, 2017

Summer is coming!

This seems better than "Winter is coming!" I have yet to see this season's episodes of Game of Thrones and wonder if permanent winter has come yet to the kingdoms. Back to the present though~~it is a rainy Saturday in June so a perfect opportunity to write blog posts. The first one today was an update for Dick's continuing adventure on our catamaran, Van Kedisi. https://sailvankedisi.wordpress.com/2016/06/18/french-polynesia/

Tuesday evening my friend Suzanne and I depart for Papeete, Tahiti to join Dick and Rick onboard Van Kedisi for two weeks of adventure. It will be interesting to see a totally new place where relatively few people I know have ever gone to.

Breast cancer has been on my mind this week as two friends started treatment for recurrences yesterday. One woman is from our breastcancer.org 2012 chemo group who was with so many of us in Las Vegas in 2013. The other was in our Cowgirls versus Cancer retreat in Montana in spring, 2014. We hold them in our hearts even from afar. Our amazing massage therapist from that retreat was diagnosed with breast cancer not long ago and she has gone through the chemotherapy part of treatment so far. My BIL, Wilf has had two surgeries and chemotherapy for colorectal cancer diagnosed with one of those simple stool sample tests last fall. Thank goodness he did do that test even though for him at the time, it was routine with no expectation of cancer. He will do 4 months more of chemotherapy once he recovers enough from his April surgery. He and my sister Kathryn continue to amaze me with their positive outlook and resilience.

As is comes up to almost 4 years since I found my infamous lump, life goes on of course. Briefly, the same old cancer take-aways persist but none of them life threatening, just annoying and daily reminders unfortunately as without them I think I could forget that this ever occurred. I think I must write a post about breast cancer and aging, since often the lines are blurred on which causes which symptoms.

Depending on who I ask~~physio, massage therapist, breast surgeon, plastic surgeon, GP, or others who have similar treatment, I get many different answers or rationales for the ongoing irritants. My right scapula has been popping out and along with shoulder pain and weakness plus the cording under my arm it is clear that the symptoms are related to surgeries and radiation. But osteoporosis has affected my shoulder joint and is this due to aging or the drug I take against recurrence? Ha! Of course no one really knows. But my MT did say one day, that people of a "certain age" can have shoulder problems like this. Very diplomatic! But other professionals say radiation is the main culprit, the original scar from my lumpectomy has caused the cording, yes it is the drugs I take, nerves were cut during the mastectomy and/or lumpectomy thus the scapula popping out and so on. The good news is that yoga, walking, lots of range of motion exercises and my wonderful massage therapist and physio help and there is nothing dire going on.

I have been on a waitlist since last May for a revision that may help. My plastic surgeon says he can cut the very hard cords that disappear under the lumpectomy scar though I am aware that more surgery can cause additional scar tissue but hey I think I will give it a go.  I have gone from #26 to #19 on the waitlist in the past 6 months so it is not imminent anyway.

I did have an incisional hernia repair in April which was totally unconnected to cancer and that was successful. I had to kick back with no yoga or exertion for a month but that was OK too. Lots of time for thinking and reading and movies on Netflix. Thanks Andy for that!

In the last post I referred to my chickens. While I was recuperating from the hernia repair I was witness to our broody hen Laila's instinctual need to be a mother. It made me think back to the beginning of this chicken hobby of mine and it does relate directly to my time of BC treatment though I had never really realized it.


In the fall of 2012 while I awaiting the pathology from my lumpectomy, Dick found himself a project~~why not build a 5 star chicken coop? Though the family seems to think it was my idea, I have never really believed that. But I am glad. Dick built a masterpiece and nearly broke his back in the process as he fell off while putting on the roof and landed on his drill which hit the ground first. He was badly shaken, grey and bruised and as luck would have it, Karalee Greer who is a physio just happened to be here. She took a look at him and with ibuprofen, an ice pack and instructions to lie down for the rest of the day, I went off to the art gallery as planned with Susan Penner. I called several times to see how he was but no answer. Of course, once we left he went back up on the roof to finish the job!

Chickens did not appear that fall as chemotherapy followed by all the other nasty treatments and surgery took precedence. However the following summer when Dick was off sailing across the Med and Atlantic, Andy and I picked our first young chicks. Of course I picked a rooster and have done so more than once since they do look more attractive than hens. We did end up with a couple of lovely hens, Eva and Fluffy and though they are no longer with us, my hobby has expanded and looking back to when Dick built that coop, I am grateful for the way it evolved into caring for them and forgetting often about my healing self.

Laila went broody in March. This is something that happens to a few hens and often it is impossible to break this trance like state that has them sitting on a nest 24/7. I was going away and hoped that she would be broken of her broodiness but it was not to be. Lori, our tenant got her 6 fertilized eggs and on April 15, 5 adorable chicks were born. I was captivated and spent much of my recuperation watching the interaction between mom and chicks. I know a lot more about chickens than I had ever anticipated and can see that I would never have made a good farmer~~just a few chickens can be a lot of work! But thanks to Dick it has been amazing therapy.

This will not be the end of the story though. Laila went broody again last week and is sitting on 6 more eggs but not at my house. She is with a wonderful family who also took 3 of the chicks. I am off to Tahiti on Tuesday night and broody hens need lots of attention. I do get Laila back though as well as "pick of the brood." We are allowed 4 hens and no roosters in Vancouver and I currently have 4 hens and 2 chicks who look like they will be hens. But we do have a big lot and so far there is lots of room. The good thing too about chickens is that they are dispensable~~either other chicken lovers take them or they can end up in the pot. One of our young roosters did become coq au vin made by Lori and enjoyed by Dick and her. I am not into eating my pets!


The one thing that I am not doing this year is trekking in Nepal. I am sure I have at least one more trek in me and am contemplating Mustang (Lo Monthang) next May if anyone is interested.

Much love to everyone who has any sort of cancer or is recovering from or living with someone with cancer or who has a friend or friends with cancer. It is not easy but it is possible to have fun and keep on trekking!