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