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. 

SUMMER TO FALL

August 12th was when I was admitted to hospice and it is now September 16th. I missed half of summer and probably the best part of it. However, there is no going back and I am so happy to have this amazing chance to get back to a more normal life, strange as it is to have a foreign device embedded in my abdomen.

The plan this week is to get me home. The representative from Medtronic who makes these pumps is coming over from Vancouver and I will learn how to operate the remote control device which is connected wirelessly to an iPad for dosage directions and more. My only involvement will be to learn how to add boluses (breakthroughs for more painful episodes) which will be predetermined along with the daily dosage by the doctor and nurses at the pain clinic. The system is set up so that I cannot “hack” into the pump for unlimited boluses.

Now that pain and the delivery system to reduce it has been “installed,” we are back to considering how to best deal with the cancer that is causing the pain. My oncologist was in to visit last week and the plan is to restart chemotherapy on Thursday which is also the probable day I will go home. I will continue with IV Gemcitabine weekly for 3 weeks with a week off and so long as tolerable this cycle will be repeated. A PET scan has been ordered as we still want to try to find out if possible, what happened to cause the major pain flare-up. Since the most recent CT scan and MRI did not appear to show any progression I hope that the PET scan either aligns with the other tests or does give us some indication of what is going on.

Meanwhile I look forward to getting back to a life with less pain with a goal of forgetting it exists for a few minutes then half an hour and so on. My daughter made a comment this weekend inferring that it would be good if I could get to the point where pain did not interrupt activities including social interaction.  That may not have been exactly what she said or meant but I took it mean that I could go back to being a “normal” person rather than being consumed by pain. What a great concept! With the federal election around the corner, one of the first normal (for me) things I can do is volunteer for either one of the Victoria candidates or Dogwood. All I have to do is get home and decide what I can manage with my somewhat weakened body along with a mind that is being weaned off systemic narcotics. 😊

I may have mentioned earlier that Suzanne gave me a Kobo just as I was being admitted 5 weeks ago.   From reading one book every few months, I have read half a dozen or more and managed to withdraw three more books from the Vancouver Public Library last night. The reason I almost stopped reading was because I had to put my book down every time I needed to turn the page and that became way too tiring. Much as I love real books, being able to hold the Kobo and turn pages with the same hand has been a wonderful gift. Mary encouraged me with her help to try quilting again. We actually started the process but it was at the time that pain was ramping up and it was impossible. Maybe now though I can try again. I doubt I could walk more than a block now but starting from that point will be yet another challenge. Dick will walk with me, Mary will take time to work with me to get back to the baby quilt we started and maybe I will get a few voters out to the polls October 21st.

I will be home when I write the next post.

POST OP FUN

I have been in the Victoria hospice nearly three weeks now. While laying around in a $10,000 exceptionally comfortable air bed with nary a chore to do may sound good, I am finding it a tad boring. While lying in said bed, in the last post I explained the first week was for new narcotics and old to come and go or increase or decrease all the while nurses and doctors carefully watching for any changes, given the very high doses of narcotics I had been on. Much has happened since then.

My 4th room and finally a single

One week after admission I had my first surgery. Done under a spinal anesthetic, a catheter was inserted into the intrathecal space surrounding the spine. The worst part for me was getting comfortable on my stomach given all pain I had, not to mention the bony parts from my original mastectomy and subsequent breast surgeries. Some twilight sedation fixed that and an hour and a half later I was shifted from the OR table while being told to cough and breathe deeply as my blood pressure was 62/26.  Any movement caused serious pain but surgical pain goes away, quite different than the other neuropathic pain. In any case, within a few days I was up and about other than the alarm of a leak which turned out to be mechanical rather than cerebrospinal fluid. It was easily fixed though it did delay my activity level which most of you know, is very hard for me~~I like to be active!l

September 3, 2019~~less than a week until the Stage II surgery. There has been progress for sure and my doctor continues to fiddle around with my meds in hopes to get it right. I have been home several times on passes for a few hours at a time. No overnight passes with an external intrathecal pump and to be honest I feel well taken care of here. The burning and throbbing in my hand continues when I am up due to circulation but it is so much better. All I can think of is that my hand is the farthest for the medication to reach. 


I do feel honoured to be here in the Victoria Hospice. I know most hospices do not have acute beds for pain management so that is one big thank you. I was so lucky when I was here just over a year ago for pain management but also to have met a doctor who had taken an interest in my case. He is an anesthetist first but also runs the Royal Jubilee Pain Clinic where he does several kinds of pain interventions. He did the stellate ganglion nerve blocks I had over several months but at best they are not long lasting. Frequently he and his team do simple epidurals and temporary intrathecal blocks  to relieve pain for those in end of life situations. They have not done a permanent intrathecal insertion with an embedded pump for nearly three years. Apparently it is costly and when my doctor first discussed the option, he said approval was needed~~not sure how high up, but it was approved so once I was admitted this time, he got the ball rolling and here I am. It was also explained by the doctor in charge of hospice, that I am simply a good candidate. I have chronic excruciating pain caused by a cancerous tumour but also have the expectation of "long" life expectancy given the slow growing cancer. He actually wrote something similar in his notes from last year. I try not to get my expectations too high but know that I am lucky already and to have a decent chance of pain relief if this works, is significant. There are certainly possible side effects, even so far as paralysis but we agreed that living with constant immobilizing pain is not an option. 

September 5th~~Wow, super annoying as yesterday I updated this post with photos but was  interrupted and unfortunately lost it all because I guess I forgot to save. F**K! 

I do want to describe what happened on my first pass shortly after that first surgery. I had wanted to go home for a pizza party with the family as all the kids were home. Andy had flown in from the north for a few days, Steven and Heidi were back home from Steven's year at the U of Nanaimo and Mary and her partner David were also around though it was their last night before heading east for a holiday.

Anyway I got my pass literally hours before this little pizza dinner and arrived home with my intrathecal IV via the external pump, a central port line and a couple of subcutaneous lines. I was dressed in hospital clothes not knowing what was coming. I noticed a couple we know on the deck as I came through the garage on to the deck but thought they had come for a drink. However as I walked into the kitchen I was so surprised to find a house full of friends and family there. It was my first ever surprise party and Dick did an amazing job considering that he had organized it long before I was in hospice. Every time I turned around I saw someone else. Friends from Victoria old and new, good friends from Vancouver who made the trip by ferry, Patti and Lyle by seaplane, Chris Worsley from Seattle and more. Mary's best friend Kath was there with 3 week old baby George and her husband Alan. Chris came on my 2014 Annapurna Base Camp trek along with his two sons Alan and Andrew. Kath was also there but did know the Worsleys. I love it that 5 years later Kath and Alan who met on the trek are now married and have a baby, making 3 generations there at the party. 

I almost forgot to mention the two orcas Lyle spotted in the bay. They breached and ate for as long as we watched them. What an addition to an already special night though we could not get a photo.

Heidi, Steven and Andy at the top with Mary and David in front

Elaine making sushi as always

Patti, Joanne and Bev

View of Gonzales Bay that evening

Mary, David, Kath with sleepy George and Alan

Chris, me and Suzanne

Baby George

PAIN

My last post was mainly about my uncontrolled neuropathic pain and where it had got me. It got me into hospice to start with. However I am not sure that I really emphasized how bad the pain was to get to that point. It had steadily been increasing for weeks but the last week was especially bad. By the end I would wake in what I call the dark and scary hours and kind of murmur to myself about giving up and going to ER. It is hard to mobilize when in pain so I just took my Hydromorphone every hour~~the 2-3 tablets prescribed and wait in hopes the throbbing, burning pain would stop. Usually 3 or 4 hours later I would fall asleep for a few hours only to wake up wondering if it would hurt if I got up. Yes would be the answer and just using the bathroom and brushing my teeth would start the whole cycle off again and back to bed I would go. I did manage to stay up long enough each day by late afternoon to play "Ticket to Ride" with Wayne, Anne and Dick, though few times I would have to lie on the couch for a few minutes to push the pain back. Every once in awhile I would actually feel quite normal and then would think that I had been imagining all the hours of lying down, taking my meds and hoping for relief. One highlight was managing to stay up long enough to teach Dick how to make Elaine's grandmother's biscuits. 

But Monday morning when the phone call from hospice came, so did relief come with it. The end game for admission this time was to get me a bed so that I could be guaranteed  surgery as soon as possible. However the immediate goal on admission was pain management. I had this neat little yellow contraption embedded in my upper arm that subcutaneously allows narcotics to be pumped in all by myself~~well there is an hourly limit! The Hydromorphone was infused through the pump into my arm via the little yellow butterfly thing.  Methadone in a higher dosage was given orally as normal plus a new one was added~~Ketamine. Ketamine I was told by doctor, was at one time a battleground drug, because it is easily given as an oral liquid that works quickly. I have also learned that it has been used as a veterinary tranquilizer, an anesthetic and also as a recreational drug. For me, this addition to my arsenal seemed to make all the difference and by Thursday things had really turned around. I could actually get up and do simple things like brush my teeth, wash my face and even walk to the end of the hall without that burning, shooting, electric pain that brought me here.

Back to the aforementioned surgery~~ it is scheduled for 0800 Monday morning. The procedure is the temporary insertion of an intrathecal catheter with an external pump. The  catheter will be threaded up the spine to the axillary area where medications will be infused from the eternal pump.  Following surgery I will be monitored for a few days to ensure that the  system works. 

Apparently this is Stage I. The next step if all goes well, will be back to the OR for the insertion of a catheter but with an implantable pump. Sounds like fun don’t you think? It will be done with a spinal anesthetic so I can let them know if there is unexpected pain as the catheter is placed. 

For now, I am laying around napping, doing the odd Sudoko, and reading books on the brand new Kobo Suzanne got me. She also added several books and got it linked with the library. Mary picked it up from her in Vancouver and I got it Sunday night~~perfect timing for my admission the next day. She knew I would love it as holding books had become so difficult I had virtually given up reading. After each page I had to put the book down to turn the the page, not to mention how hard it was just to hold the book in one hand. I read a whole book on my Kobo in the first 3 days here.

Dick has gone off today with Mary and David for on an overnighter on VK. I was supposed to with them but it is clear why I am not. I am just happy that they have this opportunity now.

Sunset from Van Kedisi in July

SUMMER UPDATE 2019

It has been my intention to post here for a couple of weeks~~in fact since the anniversary of my first diagnosis July 27th. The metastatic cancer anniversary is coming up later this month.

But things have changed so fast that every time I have started, either I have been in too much pain or I have not had the energy. July 19th (Dick’s birthday) we went sailing with Elaine and Suzanne and I am so thankful we did because I have not been out since. This week our friends Anne and Wayne came from Calgary to visit and sail with us for part of that time. When we made those plans I was able,  but just before they came I had to tell Anne that we might have to cancel the Van Kedisi part. Even up to Wednesday night I was protesting that we could manage. But we are glad they came nevertheless.  Dick got to cycle out to Sooke with Wayne while Anne and I hung out here. The three of them have cooked wonderful meals and this morning I  managed to teach Dick how to make Elaine’s grandmother’s baking powder biscuits for breakfast. It was a great break for Dick too.

I am now number #1 on the list for the Victoria Hospice. The pain has increased day by  day and my medications both routine and for breakthrough have gone up at the same time to the point that I have only been out twice all week, once for blood work and the other for chemotherapy. I started a new chemo drug on Thursday as my oncologist feels that Paclitaxel is no longer working plus side effects like tinnitus and neuropathy have crept in. 

So the pain is bad, but hopefully a surgical intervention will stop the pain even though though there are possible side effects. It is neuropathic pain caused by the tumour in my axillary area that is wrapped around the neurovascular bundle of the brachial plexus. Sometimes the burning, throbbing pain radiates from my scapula and and often goes right down my arm to my fingertips. That is happening right now and the fingertips feel as though electric currents are firing out. My recent scans showed nothing amiss but something is happening to create the pain. 

I am happy to say that I have won 2/4 games of Ticket to Ride while taking  Methadone on a regular basis along with frequent Hydromorphone for breakthrough pain so it seems that my brain is still functioning. Anne dislikes Settlers of Catan which is just as well as that game just may be beyond me at this point. 

Anne and Wayne leave this afternoon so Dick will be back to full time work here. Trust me, this is not easy for him with the changes hitting us so quickly. Nevertheless, this is not life threatening as my tumour is considered local or regional so far. Not to minimize the lack of use of my right hand and the debilitating pain but if the surgical intervention we are looking at is successful, then the pain may be eliminated. As my cancer agency pain doctor said a week ago, losing some more mobility is probably better than having to lay around most of the time. I agree. Despite knowing it s not my fault, I feel so useless.

Monday, August 12 update. I have been admitted one of what they call acute beds in the Victoria Hospice. There are 7 acute/respite beds here and 10 beds for those approaching death. I was here last spring for pain management too but this time the pain is far more severe.I will keep on a more regular basis but I already feel better in hopes that we will see progress sooner than later.

Also, Mary arrived last night and will be with us, working and visiting until she and her partner David head east to visit his relatives for a short visit. They both return after labour day to head back to Uvic. Before they leave Steven and partner Heidi move back from Nanaimo where Steven has just completed a university program. Andy who lives in Terrace where he finished his BASc in Nursing in May SUMMER UPDATE 2019is flying in on August 22 for a week. It is not often to have all 3 kids here in Victoria at the same time so I look forward that. Maybe I will even be home by then.

This photo was taken July 20th

LIFE IS PRETTY GOOD

Much thought goes into the beginning of a blog post for me and it usually there has been a reason for reasons for me to want to speak up. In the 7+ years since my first breast cancer diagnosis the roller coaster analogy is never ending though the ups and downs do have those plateaus where you catch your breath or the ride comes to and end. Unlike the roller coaster, once we are faced with metastatic cancer, stage IV or simply cancer that will never be cured, it is difficult to banish thoughts of what's next or how long do I have along with facing the necessary details like wills and end of life plans. Of course we all have to face these things but somehow having metastatic cancer can make it more imminent.

Back to the purpose here. Christmas came and went and was wonderful. Soon after everyone returned to school I fell back into a trap that happens once in a while. When this happens I find myself wanting to know more about my stupid tumour or the blob as I often refer it as. No matter how unreal it is, I want to think that there must be some way to attack and release the tumour. In early January I saw my family doctor who was sympathetic and sent me off to a plastic surgeon that I had seen before. But of course she said again that there is nothing that can be done. She had sent me last year to the best team in terms of surgery but once they saw the scans they said it was hopeless. I guess I buried it in my mind and had to hear it one more time. I cried a few tears, went home and called M.D. Anderson in Houston, Texas one of the two preeminent cancer centres in North America. After several telephone calls I was sent a package. If I wanted to have my case looked at by an assessment team I needed to send every single scan from the beginning plus just about every document also from the beginning. The cost of the team looking at my case would be US$16,000 to 32,000. We had called our insurance company and they would have paid for the second opinion. It only took me about 24 hours to think it through and know that it was really not worthwhile. The plastic surgeon also gave me names of two doctors in North America one in Toronto and the other in St. Louis who do brachial plexus surgery. I have pondered making phone calls but the reality is that no one will touch a tumour  entangled around the neurovascular bundle of the brachial plexus. Chances would be good for bleeding to death or losing all control of my arm. My oncologist says it is very common for patients to go back every once in a while try and find a way to make it all better.

Once I got over those few days in January my positive self emerged and I started yoga, exercise and meditation classes at Inspire Health again and decided to get some counselling. It is helping.

Here is a little excerpt from my journal which I planned to add to this post.

Sunday March 3, 2:17 PM lying in bed feeling very weak and suddenly a bit afraid. This is going into a  blog post but I will try to encapsulate my feelings around my health and how it has been for the last couple of weeks. The brachial plexus infusion which was nine days ago has done nothing in my estimation. I am feeling more pain now. Scary again.

So what are the things that are of concern with my metastatic breast cancer right now?

Continuing pain which is manageable as always with narcotics. So not a big deal? Yes or no? It depends on the situation and the timing.

Mental status. This one goes up and down and sometimes on an hourly basis or worse. But also it can be brought it on after several months of seeming normalcy.

Activity level. This one is very difficult to describe. I am sick right now well into week 2 on a cold and cough very productive with green phlegm. I feel as weak as I have ever felt well maybe not as weak as when I needed blood transfusions. But this is a weakness that I do not like but am getting used to at this point I guess.

Scaredy-cat level is at one of the more highs than usual.

March 9th, 2019. I had an MRI last Saturday night and I had a CT scan Tuesday morning along with the usual bloodwork and then chemotherapy on Thursday morning, the third Thursday in a row. Along with Paclitaxel I get Dexamethasone which is a steroid to ward off any allergic affects of the chemo drug. Mary was in a session called "Tremendous Trees" that was part of Ideafest at UVic this week and one of the things she learned is that Taxol drugs (Paclitaxel being one of the Taxols) originally came from the yew tree. That was kind of a fun trivia fact I was aware of, having had Taxol back in 2012 but it was interesting that she learned about it from a session on tree research. Hey this is one of the positives of having breast cancer~~ we learn a lot. I must add that allergic reactions come from the fillers used, not the Taxols themselves.

Back to chemo day. Then I get Benadryl, another allergenic drug along with Ranitidine in case of nausea. The dexamethasone and the Benadryl fight each other so I feel wired but tired. Usually I come home feeling a bit weird but also energetic. This week not long after chemotherapy I decided to do some pruning in the garden after Dick and I had gone for a walk. I pruned my way up to the road and tried to get up from a sitting position. However with only one arm/hand working and weak legs I managed to throw myself onto the roadway. Tripping and falling have become quite common no doubt due to medications, chemotherapy and stupidity on my part. Icing, Ibuprofen and bedrest seemed to do the trick and gave me time to work on fundraising for today's event.

That was Thursday afternoon and today as many of you know I walked 5 km with my special little team called "Breast Cancer Eh?" Dick, our daughter Mary and her partner David joined me on Inspire Health's major fundraiser of the year. Inspire Health provides cancer patients many resources such as counselling, yoga, individual exercise routines, nutrition planning and more. All of this is free with money coming from a grant and this big fundraiser today.

It was only Wednesday while lying in bed that I decided to form a team and get the word out to my friends all over the world. The response was heartwarming. Today was a beautiful day in Victoria, relatively warm (6C) with no wind and I actually managed to walk the 5K, something I did not think I could do. I have to throw in the fact that we came 5th in team donations.

I have left the best for last. My oncologist phoned late yesterday afternoon with good news. Both the MRI and a CT scan appear to show stability with no signs of progression.

Maybe there is another trek in me yet but I have a long way to go on strength and balance. For sure I am feeling positive.

Love to you all,

Marian

  

Relaxing on Dean and Marie's catamaran in the Bahamas in February.

Dick, me, Mary, David and Franny the pug today at the end of the inspire Health 5K walk.

CHRISTMAS 2018

With only a few days until Christmas I am feeling a mixture of happiness and excitement along with  a bit of of nervousness. I have written in the past about Christmas not being my favourite holiday. However my first Christmas with breast cancer in 2012 was one of the best. Two families got together in our home in Vancouver and for several days there were up to 13 people celebrating with good food, wine and company. Although my taste buds made everything taste like cardboard, including good wine, it was the companionship that made that holiday so much fun.

This year our kids and their partners along with a nine-year-old are now gathering. Christmas Eve we head for Mount Washington on Vancouver Island for four nights in a spacious townhouse. Everyone is pitching in for meals and all that goes along with that. My main job will be relaxing while trying not to supervise too often. There has been enough snow in the past 10 days for all snow sports. I hope to snowshoe at least once or twice and thankfully the Nordic area is right next to our townhouse and downhill is ski in ski out.

Just two days ago I finished my third IV chemo on my new regime. It is called Paclitaxel, one of the same drugs I had back in 2012/13. This time it is a reduced dosage given every week with a week off. Luckily I get Christmas week off. So far I am feeling good for the most part. I do need to rest and take myself off to quiet spaces when I feel overwhelmed.

The last chemo which was oral caused me hand/foot syndrome which made it painful to walk. One of the trade-offs this time is that I will lose my hair and I may still have some neuropathy in my feet and hands but for now I am okay. I am also hopeful that this chemo may push back the tumour that is wrapped around the neurovascular bundle of the right brachial plexus. I still have intense pain but it is managed.

My next post will be in 2019, 1 1/2 years into metatastic  breast cancer. There have been some rough times in the last while but I feel as though I am entering an upward phase with much hope. My family and friends continue to support me even when I am sad or angry.

I wish everyone a wonderful holiday season no matter where they are or who they are with.

Love Marian

This is my latest hairstyle. In 2012 Mary shaved my hair into a mohawk for fun but it only lasted an hour or so. This time I decided to have more fun with it and until it starts to fall out I will sport this mohawk, colours and all.

PROGRESSION AND HOW IT IS AFFECTING ME.

After writing several posts without publishing I am hoping that I  can form the words I want to in order to explain my hesitation. When I last posted I it was about the main events that can cause stress in our lives. That post spoke about how the move created stress in our lives.

The second stressor for us falls into the category of a "major illness or injury" When we/I bought our Victoria home in January, 2017 with possession in June I  had no idea that I already had metastatic breast cancer. We took possession June 20th and I returned to Vancouver on June 25th for removal of my implants. I really did think the problems I had had with my reconstruction much earlier and then with the second try for reconstruction in December, 2016 were part of the problem. Not so and two months later I was diagnosed with metastatic breast cancer. Fast forward one year and that metastatic cancer has progressed.

I feel lucky that this progression was found. The reporting of an MRI I had in June during my stay at the Victoria hospice for pain management showed stability. Fortunately my wonderful oncologist sent  the June MRI for review by the wonderful head radiologist in the Vancouver cancer agency. He had followed my testing last summer and also did the core biopsy which led to the diagnosis of metastatic cancer. With both MRIs, he was able to compare this new one with the diagnostic one from last year. Sadly it showed a lot of progression as well as some hot spots.

Last week I had a full bone scan and tomorrow I have a CT scan. In November I will have another MRI. Of course I hope that there is no change. The day after we knew there was progression, I was taken off the wonder drug Ibrance. Its purpose was to stop the multiplication of cells. After one year on Ibrance I am now on chemotherapy.

By the time the progression was found the pain had become excruciating despite a change to methadone. I have another narcotic for breakthrough pain and I would often find myself taking it five or six times a day. While I was in hospice I had a consult with an anesthetist who specializes in nerve blocks. I have had two Stellate Ganglion blocks so far and my pain has decreased significantly. However it is short acting so it must be done every 2 to 3 weeks. I am hoping for a block that is more invasive but is long term. My doctor has started the application process but it is very expensive and must be approved by the cancer agency and it is dependent on their funding. Also they must find me to be credible candidate.

I have no use in  my right hand and gradually the action in my wrist is diminishing too. One of the side effects of the chemotherapy affect the extremities and as I understand it, the toxins pool there. The bottom of my feet are bright red and painful but with the help of another woman in my metastatic support group at the cancer agency, I got ahead of it before any cracks or blistering occurred. I soak my feet several times a day in lukewarm water and apply a special cream that my friend brought me. Unfortunately it has affected my left hand and I have painful cracks appearing under my nail beds.

These side effects are more annoying than anything else but they make me feel useless and everything takes twice as long. However as in most of you know, I am not one to give up and I am often as busy as I was before.

This second stressor of a major illness has created frustration for me and I do wonder what is next. I know that I am not always easy to live with and it is difficult for both of us. I need more help which is hard to ask for as I have always been independent, again something that most of you know about me. Dick is not captain of this ship, but for five years he has been in sole charge of our catamaran Van Kedisi, often for several months at a time. Now that he and the boat are home I think it is hard for him, especially as he would have preferred to live in our old house in Vancouver. To come home  to Victoria to a house that he did not choose has been very stressful for both of us. He keeps saying that this transition will take time and maybe years in fact but for me, I do not know if I will be around when he finally settles here.

Metastatic breast cancer is different than breast cancer where we can hear that we are NED or no evidence of disease. The best that those of us who have metastatic breast  cancer can hear is NEAD or no evidence of active disease.  I am not at that point and I do believe that I will live for many years.  However It would be easier to live with my cancer with both of us on the same team. On a positive note, I do feel that it is possible but it has been important for me to write this post even though it has gone through several iterations.

Below, I have added some photos of our wonderful family and friends. For the most part as you can see we had a wonderful summer. If I find a computer friend soon I will put the photos into a better scenario and also add names. Meanwhile, it is fall and fall is my favourite season. I wish you all a wonderful fall too.

Our son Steven and his partner Heidi.

Patti and Lyle with us on an overnighter on VK.

Our good buddy Suzanne on VK~~she crossed the Salish Sea with Dick at the end.

Honeymooners Kath/Alan and our daughter Mary and her partner David with me on Saturna Is.

Honeymooners with Dick on VK.

Our wonderful friends Fred and Shelley who I have known for 40 years!

A selfie with the most amazing farmer I know.

I  cannot say enough about the cats of our lives, Flobi and Jake.

Elaine and me~~so lucky to have her in my life.

Steven and Heidi with me.

With super sailors Jane and Russell who we have known since our kids were toddlers.

Jana not long before twins June and Iona were born with old Saudi friends Marie and Dean.

Dean sailed the last leg on VK and Marie flew to meet the crew from Wisconsin.

She also sailed legs on VK.

Captain Dick on Saltspring Island 4 days after he made landfall in Victoria.

My wonderful yoga/hiking buddies from Vancouver. They came to Victoria for a 3 day reunion.

From left at the back~~Brenda, Wendy W and Wendy H.

Front row~~Claudette, Marian, Mary and Diane.