DEXAMETHASONE, CHICKEN WINGS, AND MORE

JANUARY 17, 2021

The pleasures of dexamethasone allow for pleasure of food as well as looking as though I am not looking gaunt. However they do not extend to being able to get out of bed because I've become quite dizzy on the dosage. Monday we will go down on dosage and hope to stay there.

I did get out on Thursday in a medivan with two great attendants and an extra one who was on training. This was to get over to Dr. Svorkdal's Pain Clinic for a pain pump fill. So I got to see the neighbourhood on a sunny day and on the way back they backed in so I could see my chickens and Andy brought up my favourite one, Zoe who is a True North Blue. Andy brought Thelma, my biggest Jubilee Orpington in last night to visit. Her combs and wattles are very red and I think that she will lay soon.

You may recall that my son Steven came from the Sunshine Coast north of Brisbane in Australia almost 2 weeks ago and has been allowed to visit masked outside my door on the deck with mask on. I too was supposed to wear a mask and finally on the lastly am complying. I think we all know I could be considered to be defiant/independent and now apologize in this case. I miss Heidi, Steven's wonderful partner so much but she is working full time on her online art and jewellry store that is all personally made. Were she to come now, she would have to quarantine two weeks here and two weeks when I'm going back so we shall see. My daughter-in-law Kara, wife of Andy and mother of Parker are now working and in school in Terrace. Should there be an opportunity for them to come on a break perhaps I will be overjoyed to see them.

There is no question that I feel some mental deterioration as is expected and I hope to be able to write this blog for a little bit longer. I think today's edition is enough for now. Love you all, Marian

DYING OF BREAST CANCER

Yes, I am dying of metastatic breast cancer. I was quite surprised myself when I found out, especially since a CT scan done November 27th showed no progressions. That same day I had my fourth and last session of BCCA Music and Art Therapy, and found it hard to complete. When one has MBC (metastatic breast cancer), often we blame ourselves for not having the energy to complete a project. On the 4th of December I spoke with my pain clinic BCCA doctor and still did not realize that things were going wrong. 

Early in the morning on December 17th, I had an MRI. The next evening, we got results that showed leptomeningeal disease (cancer in the brain), which leads to a fast death. I had been suffering from a light headache and occasional nausea for a month but chalked that up to psychosomatic illness. I  woke up on the 19th to nausea and vomiting and that continued daily. Thankfully I had started counselling before I found out. It has been the best thing I have done for myself in a long time, and for everyone else. 

December 31st I went to the BC Cancer Agency to begin palliative radiation, and then was admitted to the oncology floor of the Jubilee Hospital in a special unit for palliative patients to complete the ten treatments of radiation. On January 8th, I came home to die. As I left, my radiation oncologist, a woman from Iran, said a few weeks to two months. I began to receive home support almost immediately and now receive it three times daily. 

My whole family is here. Steven is here from Australia, in quarantine at a good friend's AirBnB. The head of the Island's palliative team has given exemption for Steven to visit on the deck outside with a mask on, and he will come to live with us in 8 days. Andy flew from Terrace on the same day, the 4th. And Mary has been with us for several weeks, taking on a lot of the care. 

It was scary to hear the news at first and I became disoriented during the treatments and did not even know where I was during my time there. Thankfully I am better now at home though there is no question that my cognitive skills have deteriorated.

I took this selfie of myself wearing new self tied scarf sent by my cancer buddy Elderberry Dec. .25

FALL PROGRESSIONS

Summer has progressed into fall and with it some beautiful weather, even warm at times. Fall is my favourite season and this year is no different. Changeable weather on Southern Vancouver island has been spectacular. It also reminds me of the many times I have been in Nepal at this time of the year. I miss the mountains but have much to look back on, time spent with friends in  more leisurely yet challenging ways. I often spent a few days trekking on my own in areas near Kathmandu before our groups would arrive from Canada, the US, New Zealand and the UK and even Hong Kong one year. Although I hiked with a porter and a guide I learned a lot about myself in those times alone. I took a break in 2012 and 2013 when breast cancer first appeared in my life. It did not stop me though and I was back leading two treks to Annapurna Base Camp in 2014.  Although my trekking life came to a halt with metastatic breast cancer diagnosed soon after the second Lo Manthang (Mustang) trek in 2017, the learning has not ended.

Today is Dick and my 37th wedding anniversary. I consider that another feat that has not always been easy, nor is it easy now facing the prospect of an earlier death for me than we expected. Anyone who suggests that all of us are going to die someday have not endured metastatic cancer.  Covid has affected all of us and has certainly given not just us but the whole world pause to think about life in general. No longer can we nonchalantly go on in our lives when we really do not know what is coming. Whether we acknowledge it or not, indigenous, people of colour and black lives matter in a way that so many of us born to white supremacy have never faced before. We now have to choose to be racist or anti-racist. I watched the premier of our province have to backtrack following a debate this week when he said "I don't see colour." Let's hope that we can all learn more and in doing so show more compassion as we find ways to really break down barriers.

My last blog post spoke about metastatic progression and endurance. Yesterday I read the list of treatments another woman with MBC wrote about~~ surgeries, chemotherapy, radiation, physiotherapy, lymphedema therapy and more since 2012, It sounded a lot like my list and clearly so many of us endure countless treatments and the appointments that we must attend. For me, I have also had three hospice stays and one hospitalization in the past couple of years. Back in the"good old days" of breast cancer~~pre MBC, i did have long periods of freedom from the medical system but these past few years there are constant reminders especially with the sometimes almost unbearable neuropathic pain. 

When I took that break from chemotherapy but pain continued I had months to think about mortality. I had gone through the MAID application process but quite clearly I was not ready to die, nor am I now. Quitting chemotherapy for 9 months created some space for me but it turned out to be unrealistic once the CT scan and August PET/CT scans showed progressions that were incompatible with my "no more chemo." One tumour is in the chest wall but so close to the surface that it could soon break through. Others could be precursors to lung cancer and one on my iliac crest may or may not be bone involvement but both lung and bone are usual breast cancer metastases. For the last two weeks my voice has been hoarse. I was not sure who to approach but decided to bring it up at chemotherapy on Wednesday. I now have an ultrasound booked for next Friday. I reread my PET/CT results and there was a comment about the isotope uptake for my thyroid. It was high enough to warrant a recommendation for ultrasound and biopsy if "clinically appropriate." There will be a biopsy I was told if the radiologist recommends it following the biopsy. 

Strangely my pain has decreased in my arm though not my hand or scapular and shoulder areas. But the change has allowed me to be upright without staggering pain within minutes. I can go for walks again albeit short ones given the weakness that has ensued over the months of sedentary activity. We are all surprised and tentative but I am trying to take it a day at a time. The roller coaster ride of life can change on a dime and the Covid I mentioned above restricts independence that I have found such a burden.

There are many things I am grateful for and know that not all us are so lucky. My oncologist has never given up on me something that others do not always feel. Covid-19 has meant many important programs stopped abruptly. We need to advocate for ourselves and search out alternatives. BCCA province wide has created Zoom groups for meditation and music therapy, metastatic support and others. I  listened to a webinar from NS and am signed up for a music/art therapy 4 week course. Phone conversations and messaging sustain me while we wait to see how Covid goes. I have always been a planner and a dreamer and at times those things can bring me to tears whereas at other times they make me aware that life goes on and the birds and flowers and ocean within view can keep me from despair.

Please note that you can choose to "FOLLOW" me. That choice is on the right side of the screen. I also posted a few recent fall BC photos.

Many surfers plus me, Dick, David and Mary Sombrio Beach on our Pacific Coast recently.

A gnarly tree in the Avatar Grove on the unseeded territory of the Pacheedaht First Nation where we hiked in September. It was slow and with much assistance. So beautiful.

Deer grazing across the street from us.

Sunset from our house last night.

SUMMER PROGRESSIONS

Yes I have another summer progression and I did not expect it. My neuropathic pain has been the focus over the last year. In fact, there had been no progression that we had noticed for close to two years. I had a PET/CT in November, a CT in February and an MRI in March and no cancer was seen. So I had a routine CT August 6 and got my results last Tuesday. I met my oncologist at my first face-to-face appointment since Covid started and appreciated it as phone calls are fine for day to day health issues but not for tough news like this. We went through the report and my doctor and I agreed that it was poorly written despite the fact that there are new metastatic masses, nodules and nodes in the chest and chest wall. 

She has asked for a new report and a PET/CT has been ordered to be done in the next couple of weeks. The situation is different than it was last November when I was at my lowest after two spinal surgeries, a cerebral spinal leak and continuous chemo. We all know that situations change especially evident as we all face Covid in different ways. Thus I will start chemotherapy on Wednesday. The drug is called Eribulin and is usually given to those who have had at least three or four different types of chemotherapy which I qualify for.

If these tumours shrink there is a possibility that my pain may decrease. Given the timeline between CT scans I think that the pain that started to increase in March may well have been caused by the cancerous growth. This is only a supposition that I have come up with but I think it has merit. Despite the pain that has made me sad, angry, depressed and has taken away much of my physical activity I feel that I am healthy enough to endure what I have to, as I begin this next adventure. It has nothing to do with strength, bravery, or fighting a battle. It is all about enduring what is needed to carry on.

There are lots of good things going on around me. We have had some good weather towards the end of summer and I have always loved fall. As all of us do, I hope that Covid will slow and that I will be able to see more people as time goes on. I so much miss seeing friends though we were lucky to have Andy and his fiancee Kara and her son Parker visit us recently. Mary and David continue to be part of our bubble and spend time here every week with us. Steven and Heidi call often from Australia as they weighed out Covid in hopes of finding jobs and a place to live on their own. Luckily they have Heidi's family there. Twice I have had a close friend stay with me and Dick has been able to get out on VK.

 I wanted to update everyone who follows my cancer journey and trust me, you will see more.

NEW EXPECTATIONS

There was to have been a Part II of the last post. However that was then, this is now and every day is a new day. Back a month ago when I left hospice I had been encouraged to live with new expectations. When I was diagnosed with breast cancer almost eight years ago it never occurred to me that I would have to change my expectations many times.  Most of us who have been diagnosed with breast cancer do not expect to progress to metastatic or advanced breast cancer though I believe that the possibility never really disappears. So I was not totally unprepared with my second breast cancer diagnosis. What did surprise me though, was the rapid loss of the use of my right hand along with continuous and ever-increasing pain eased only by narcotics, opioids, and anaesthetics. Nerve blocks worked briefly but never fully ended the pain. I have heard neuropathic pain called "the beast" more than once.  However at each juncture I picked up and carried on. I am not saying that was easy for me for or my family and friends but it was how I had managed since the first diagnosis. 

Just for fun:https://www.iwpharmacy.com/blog/opiate-opioid-narcotic-whats-the-difference


Now that we know the difference between opiates, opioids and narcotics I can say that I have probably used most opiates, opioids and narcotics including marijuana but not heroin. I recall drinking tea made from opium poppies grown on the Saanich peninsula but do not remember any real effect. The above post does make me wonder whether smoking opium would help with my pain but it does seem unlikely that any opium dens remain here.

Back to reality, this latest "pain event" has changed the way I view life and death, at least for now. I came home saying that yes, I did want to live but I wavered between denial, anger, sadness and more with way too much thinking time. The new expectations revolve around a real lack of mobility, whether from the pain, the drugs or more likely, a combination of both. The pain could be nearly eliminated by more drugs but the cost of that would be a deterioration of balance and motor skills and possibly cognitive skills. Much of my time thus, is spent reclining~~ more pleasant a word than lying down. Just so you know, my pain pump now has a continuous flow of sufentanil~~pretty much the strongest opiate around and bupivicaine, an anesthetic used for epidurals. I am completely dependent on the flow and in addition I take methadone and oral ketamine. I use a ketamine nasal spray or pump boluses for breakthrough pain. Overall this is one huge whack of narcotics.

A good friend has often called me the energizer bunny and I told him today that this is no longer the case. It is true that I have always liked to be active but this has been taken from me and I have to get used to being sedentary. That word has a negative connotation so let us say physically inactive. At first I felt this to be the worst loss ever, thus the sadness et cetera. Only recently with the necessity of a counsellor's help, have I realized that it really "is what it is" and that I can work with that. Andy encourages me to be positive and I first I took that to mean maybe I could regain my mobility. Now I am thinking that maybe being positive can be living with a big disability but still in a meaningful way. I do not know how that will look but I do know that I am a little better.

Over the past weeks I stopped wanting to talk to anyone in part because I did not feel there was anything good to say. A friend sent an email asking me about one good thing from my day. It took me awhile to think of anything good but that email did force me to recognize the beauty that surrounds me and how much friends and family do care. I am now reaching out to ask for help, something that has been very difficult for me over my lifetime.

I want to close with the wish that we spend time learning and recognizing more about the hundreds of years of suffering black people have faced while the majority of we white people have not lifted a finger. Yes we may say that we have cared but just what have you and I done to change the situation? What it will be, I have no idea but I must find a small way to join in the movement of real and lasting change. May we all do the same. If I were American I would most certainly be voting and campaigning to remove Trump whose cruelty shows absolutely no sign of abating. He has zero empathy or care for anyone but himself. While so many us cringe at his daily pronouncements, it is also time to stand up to the bully and his gang who affect not only Americans but the world.

ANOTHER HOSPICE STAY DURING COVID-19

Saturday May 9th, 2020

Tomorrow will be Mother's Day in Canada and despite it being a Hallmark holiday it does allow me to think about all the years I've been a mother and how much  I have loved being a mother. I think about my three kids so often and right now it is bringing tears to my eyes not only because of how much I care about them but also how much I want to see them continue to grow.

This is not how I meant to start this blog post but it just flowed. David who is Mary's partner  got us started watching the home videos that Scud Green,  an  Aramco brat  put on DVDs  for us several years ago. We had never watched them since we got them and I'm so glad that they came out. It brings all those memories back and even makes me feel that I was a pretty decent mom and know I still am.

As for me, for several months after the fall surgeries and illness that they caused, and for several months post chemo I felt better and better.  My hair started growing back in, I gained back the weight I had lost and we even went on a winter holiday to Roatan so that I could be warm and snorkel on the second largest barrier reef in the world. That was in February and we arrived back in early March to COVID-19.  Even so I came back happy, appreciating everything around me. With our early spring in Victoria, cherry trees were already blossoming and camellias, azaleas and rhododendrons were getting started. Flobi and Jake our decade old cats were so happy to see us especially Flobi who loves to sleep with and even on me. 

Around the middle of March I started to feel the old stirrings of pain from my right scapula radiating to  my shoulder and down my arm into my hand. Because my pain pump had worked so well  for almost six months I chalked it up to COVID stress.

On March 31 I ventured out of self isolation (being an honest vulnerable senior whose family says no going out other than to the garden and for walks) to have an MRI that had taken three months to organize. The hospital system could not understand how I could not just turn off my embedded pain pump for the duration of the MRI.  Somewhere during the wait I heard that my SynchroMed II would turn off as the MRI got going. For anyone who has not had an MRI, lying perfectly still for an hour or more is hard enough so I had taken Ativan  prior to the  scan. The pump did turn off but what I had not anticipated was pain ramping up in just an hour. It should have dawned on me then that I was seriously dependent on the pump. I had to go straight to the pain clinic anyway to make sure that the pump had come back on which indeed it did and also to help my pump filled. I asked to have the dosage increased, still thinking that perhaps the decrease awhile back was a mistake.

By this time I had been able to go nearly 4 weeks without a fill but two weeks later I dropped into the clinic saying that my pain had increased further. It was decided that I should have another increase right then and there.  I also had the feeling I was not using my PTM (Personal Therapy Manager for breakthrough boluses) correctly. I had never needed it up to this point and it was indeed defective and I had a new one sent express within two days, along with another dose and concentration increase.

Second from right is my PTM. These are the gadgets that I have close by when I am spending a lot of time in bed.

On April 28 despite the boluses that morning I could not control the pain and it really scared me. Once I got the pain under control just enough to make a phone call I called the hospice* to see if they could help me. With a brief explanation the nurse pulled my file and said she would call me back. Because they were able to pull my file and talk to a doctor and nurses there, they told me they would look into it and call me back. Within 10 minutes she called and told me they had an acute care bed  available and it was felt by the staff there, that for my own safety I should come in. I needed to be there ASAP.  Car vibrations have always increased the pain when it is exacerbated and I did suggest that Dick should try to hit every bump. Yes, sarcasm and luckily the hospital where my hospice is located is only a few minutes away from home.

Monday, May 11th. 

Soon it will be two weeks of investigation including a CT scan and another MRI to make sure that the tip of the catheter that goes up my spine was in place and had not been occluded. With no other real alternatives I was switched on Thursday to the most potent opiate in the world,  Sufentanil.*  Its big claim to fame is that it is 1000 times more potent than morphine.  This hospice is amazing and my team is unbelievably knowledgeable. Everyone is fully aware of what I'm going through and in a way that is a good thing that I had  the weekend so we could see how I did on the new drug. 

My doctor who is head of the hospice likened my situation to someone on dialysis. Without dialysis life would not go on. For me without my pain pump I too would not be able to go on. This analogy is real as I am now grappling with it. There is no question that  for now I want to live despite the fact I may never be active again. That s a hard pill to swallow but for now I  definitely want to  live.

Outside my hospice window there was a large and very old Garry Oak tree. It was lit each night and before dawn.

Tuesday May 19, 2020. If there is any confusion because you saw this earlier and it has changed a bit, I went to write a Part II to this post and noticed that parts were missing. I think that I went back to edit something and forgot to publish again after I had saved the changes. Being on drugs probably does not help!

A LONG POST

This is indeed a long post so feel free to skim or just know that I am OK or read it all.

Over the past two months I have written this post many times on the computer and in my head mostly but worried that I would be guilty of whining now that the pain is managed. I wrote a lot about a horrible ER hospitalization that is over but remains in my memory still with intensity. Again my guilty fear of whining has got in the way. So I wrote in my journal while mulling everything over. and not sending. Now I recognize that my slow recovery while back on chemotherapy has taken such a toll that mentally my recovery is perhaps even worse. Over a month ago while two of my oldest and best friends were visiting I fell apart saying I was done and felt I could not do this anymore. I also texted two other close friends basically saying the thing. I wanted to just give up. But I guess I was in such bad shape that I made decisions that were crazy. That piled on more shame and guilt. What the fuck. This is year 8 of cancer and I have endured much but I have never felt that low physically, mentally and emotionally.

A couple of weeks have now gone by and maybe tonight is the time for posting. It is November 29 and I went to 3 appointments this afternoon. The first was to have my port de-accessed. I have it accessed for bloodwork the day before chemotherapy and it is left accessed for chemo. My bloodwork has been tanking for weeks and this week it was worse. Hemoglobin below 80 means transfusion time and mine has been going down steadily, this time 79. So when I saw that yesterday I was surprised chemo would go ahead. I asked for a doctor's opinion and a GP showed up explaining that the protocol for Gemcitabine allows for low blood counts. When she did agree that I would likely need a transfusion next week that was it for me. No more chemo and especially because this was the last one for now anyway. I came home but we forgot about de-accessing my port thus the first appointment today. After that I walked to another building and had my embedded pain pump filled. The last event of the day was an annual eye exam. Good news there~~not much change after 3 years of big changes, probably due to treatment.

Ending chemotherapy should be celebratory news but I am so exhausted that I am not there yet. With my pain pump working and the end of chemo I do look forward to a slow recovery physically with hopes also that my glass half full attitude will return. For now, I admit that I am thankful that my cancer appears to be stable. Please know that I am not fighting breast cancer, nor should you see me as inspirational~~most us are simply enduring what we have to, until we cannot. The words of battling or fighting cancer are nonsense. What happens when we die? Were we failures because we dis not fight hard enough, try hard enough? I also dislike the word survivor. Those of us with breast cancer whether Stage 1, 2, 3 or 4 are not survivors. There is no cure for breast cancer. There is hope. Hope that some day the research will find out how breast cancer starts and evolves. Hope that we can get the most out of what life we have left. Hope for no pain and for many other things. Once I recover from the toll the past several months have had on me, maybe I will be able to get involved in the need for more funds for research and more care for those in need, rather than cuts all across Canada. 

The following was written awhile ago.


When I was discharged from Hospice about 10 days after the final surgery I felt there was something not quite right about it. But the doctor and staff felt that I was ready so I agreed and walked over to the pain clinic to have my pain pump checked and later that afternoon I returned for chemo. Wrong decision. I felt really sick. I realized then that I should have stayed at least another night in hospice. The next morning I returned to the pain clinic to have the remaining staples removed from my surgical sites. My doctor walked in just as the staples came out but also just in time to hand me a garbage bin for my projectile vomiting. No one seemed to be concerned and chemo was blamed. I vomited all the way home and my biggest sadness then was that no matter how hard I tried, I could not get out of bed to go to my monthly support at the cancer agency. I went the next week to my usual appointments and had chemo #2 on the Thursday. Again, I felt nauseated and the next day the vague headache I had had since even hospice got really bad and unless I lay down without turning my head it was from my point of view, really scary. I missed another important event, a major worldwide climate strike as there was zero chance of attending. I did call the pain clinic and the cancer agency, knowing the weekend was upon us. Everyone said to go to ER if I felt worse.

By Saturday my headache was worse and nausea and non stop vomiting started. I could hardly bear the idea of moving from bed into the car and it took Dick a long time to convince me. In my nightgown and slippers we made it to ER where I lay on hard chairs except for the brief procedural steps. I was admitted eventually and I felt like I was in a nightmare. Bright lights, so much noise and I was still vomiting. A few hours later I had a brain CT which seemed to the doctors to be a major subdural hematoma. Back to CT for a spinal CT and it turned out instead to be a major cerebrospinal leak or leaks. It was not until Monday that my doctor appeared to tell me the treatment. A blood patch which entailed drawing about 10cc of my own blood and injecting it into my spine was the answer. The next issue was that I needed to wait until Wednesday for the cryoscopic x-ray machine to be available along with the doctor who could free up 15 minutes of his assigned time that morning.

The nightmare continued as I was still in ER, granted that by then I was in a quieter area. I was delirious at times and needed a blood transfusion. Late Tuesday I got a bed and felt as though I had been moved to a 5-star hotel. Wednesday the blood patch was done in a sterile mini OR and within 10 minutes the injected blood into my spine found the leak and sealed it~~voila, the headache was gone along with the nausea. So, another hospital story~~many thousands of dollars spent keeping me in ER 3 nights and then another 2 nights in a private room for a 15 minute procedure. I have been hospitalized many times over the years but never felt so hopeless and ill.