This will be an incredible test of humanity – I believe the world will rise to the occasion and come out stronger in the long term. We all must stay focussed on the long term, while making the responsible, caring decisions in the short-term.
As an update …
I have been laying very low but doing well. I am finished treatments and in self isolation for the most part.
My biggest risk is through my son who works at Costco and has been working overtime since this started. My immune system is strong enough to fight this now – I believe. More worried for others.
I had appointments at the hospital last Thursday. However, the Cancer centre is now limiting contact so my appointment with my Oncologist on Monday was by phone.
I feel like I have been in semi isolation for over a year . I guess you could say I have some practice haha. At the same time I was looking forward to getting back to normalcy, so having to shift my mindset yet again.
Like many I talk too, I am working hard to not obsessively watch the news and keep my mind strong and anxiety in check.
My 3 kids in Banff have been laid off this week since their company must shut-down temporarily. They are all handling it well. My oldest son, Mitch, is viewing this as a sabbatical and has a plan to make the most of it – enjoying nature, running, working out, reading, etc.
There are many things I could whine about. My bowels are still an issue and I am being referred to a Gastroenterologist. I have a lot of body pain and more. (Ok, yes, I slide in some whining). However, I will leave it at that. This not a time to get wrapped up in oneself. Bottom line, I feel like I have it so good compared to so many. So many living on the margins that will need our support.
Hope all my friends are doing well and making the most of this unexpected sabbatical.
I hope you are spending it with those you love! I certainly am.
I received the best gift EVER. A month ago my kids’ company in Banff gave my kids a wonderful gift – return flights home for all 3 of them and time off to come home whenever they wanted.
My daughter Steph booked her flight home for the 22nd but the boys said they couldn’t come until January – Christmas is their busiest time.
Steph arrived Sunday and I picked her up at the airport. We got back to the house and there sitting by the Christmas tree was Mitch and Mack. What a surprise!!! I have never been so surprised. The boys had taken an Uber home while I was picking up Steph. Best Christmas present!!
I wrote a post a week and half ago. Something went wrong. I was too tired to rewrite it. So here is a big catch up…
I am slowly getting better. Stomach is still very tender and sensitive. I am still not eating a normal diet.
It was so good to get home and sleep in my own bed. I don’t miss getting woken up for vitals, blood work and needles.
I spent most of the first 5-6 days in bed or on the couch due to both my energy and feet. Each day I gain a bit more energy – so it’s moving in the right direction. My feet are still quite tender and peeling a bit but much better than they were.
My days are spent resting and going to appointments and trying to catch up on 6 weeks of home admin etc. I find I am too tired to write or deal with email and text. So sorry folks!
As part of my path to healing, I have started going to the Ottawa Integrative Cancer Centre. They do naturopathic medicine. No go there three time’s a week and sometimes I am there for 3 hours. I am having Accupuncture to deal with detoxification and healing my gut and feet. The Doctor is also a Dr of ancient Chinese medicine. I drink a special blend of tea brewed from the various roots and herbs. I am also seeing a naturopath, massage and Chiroprator as part of the multi discipline approach.
When the Doctor first examined me he said I am VERY deficient. He could tell by my vitals, skin colour, feel of my skin etc. He said it is clear I have lost a lot of muscle mass. All the treatment are helping so I will continue with them for a while.
I was weighed at the hospital last week. I am still down about 14 pounds – so up 4lbs from my 18lb lost. I know that several pounds of that is water since I was so severely dehydrated.
I spent a half day at the hospital last week. Dr Roberts did a needle biopsy on the one lump under my arm. I was prescribed antibiotics for another week since they are considered about infection since it was in the radiation zone.
Dr Robert sent the sample to pathology and to another lab to check for infection. She is very apprehensive about doing surgery before next September. The risk with surgery after radiation is that it won’t heal and I could have a continual wound which can be a big problem. So she is not keen on doing anything now. She is sending me for an MRI to see if they can figure out what is happening. Both she and Sehdev said the ultrasound doesn’t tell them much .
All to say, I am improving and do all I can to focus on healing and building strength. Having me kids home is a huge boast to my spirit.
I am going home this afternoon. I finally got the all clear. My Neutrophils are improving and my bowels are working. Still a ways to go but can continue to heal at home.
I have been at this hospital for 23 days in a row. It’s time.
The Oncologist is concerned about the lump under my arm. I had two new big lumps that were very inflamed. One seems to be improving. The other is not.
She said I can’t wait until next September when I have my next surgery. Apparently it needs to come out now. So she has referred me to Dr Frank (one of my surgeons from last surgery). I see him December 14th.
I find it a bit unsettling that different Doctors say different things. They did an ultrasound a week and a half ago and were unsure what it is but didn’t think it was cancer. It is near where they biopsied in August. The other Oncologist thinks it is lymph node. They removed a lot of lymph nodes and she thinks my lymph system is overloaded from the toxicity.
When I do have my surgery in September the plan is remove all the 9 or some lumps I have. They are two with clips that they have been monitoring. In February I will have bilateral mammogram and ultrasound. They are definitely staying on top of things.
Anyway – that is all just noise.
I AM GOING HOME! I can’t wait to sleep in my own bed.
I was not released today. The Oncologist is concerned about a couple of things. My neutrophils have been in decline since they gave me those 3 days of bone marrow shots. I had a very slight fever (37.7). Gone now. She is concerned that I am still not getting enough nutrition through food yet. In addition my blood pressure is irregular – mostly very low. Sigh 😔 Best to keep me for at least another day. I told her I would really like to try for tomorrow.
I am fine with it since there is no ‘cancer patient support’ line over the weekends. I want to be confident that I won’t have issues since I NEVER want to experience going in via Emergency again.
One Year Ago Today
It is so hard to believe that one year ago today I walked into the Ages Breast Health Centre at the General for a mammogram and ultrasound. Forty minutes later my world changed.
I had the mammogram first. Right away it was clear the technician seemed concerned. I was then moved to an ultrasound room. The same technician did the ultrasound. She was very quiet and serious. She left the room to consult with the radiologist.
I recall, like it was yesterday, laying there in my gown and starting to shiver uncontrollably while I waited for what felt like an hour, but likely was only about 15 minutes at the most.
In walked the radiologist, a doctor and the technician. They started examining me again and asked me to sit up. They told me they were concerned by what they were seeing. I recall a single tear running down my cheek.
I was asked to get dressed and someone would escort me to a meeting room. It was all I could do to calm myself with self-talk – I believe I was outwardly calm but I was freaking out on the inside. I managed to hold it together – other than that one tear that escaped.
I was escorted to a meeting room where I sat by myself waiting. Forty minutes later a women came in with paperwork and started explaining that I had been admitted to something called the RADS program. This is a special fast track program. RADS being the acronym for Rapid Assessment, Diagnosis and Support. She explained a few things and called the bookings office so they could coordinate a biopsy with me directly. Shock of all shocks, I was then introduced to my surgeon – Dr Amanda Roberts. WTF?!!! I recall asking why I was meeting a surgeon. No one had used the C word at this point. They just said whatever this is we need to get it out of you.
I walked out of there in a bit of a stupor. I couldn’t quite comprehend what had just unfolded in less than 2 hours.
I immediately reached out to a friend who had recently found a lump (which ended up not being anything) to see what her experience was. It was nothing like what I had just experienced. Her process took weeks. I then contacted a friend who battled breast cancer – the whole 9 yards including chemo, radiation, surgery. She also said her experience was not like that. For her the diagnosos was frustratingly slow (which would be far worse).
I only told a few close friends at that point. They were talking me down – saying they are likely just being very thorough and “isn’t it great they are doing things so quickly”. I couldn’t stop thinking that the urgency was a bad thing – as much as I tried to be positive.
By the weekend, I became extremely angry. I had started successfully convincing myself that it was nothing (I had a scare in the past due to my dense, fibrous breast tissue. Although that experience was nothing like what was happening now). I was PISSED that they had unnecessarily alarmed me. I look back now and am amazed how the mind can protect you when you are not ready to accept something – if you let it!!
Luckily, I had a fun Christmas party to distract me that weekend. I got dressed up – tight dress, high heels I drank lots of wine, danced and did my best to forget about it for the night.
Early the following week I went for my biopsy. This time I was prepared with questions and still a bit pissed. The biopsy was horrible, since, as we found out I need quite a bit of freezing. I was not frozen for the first biopsy punch. So they stopped the process and had to top up the freezing twice. They biopsied five areas. I had a work presentation with a prospective client right before the appointment and had not eaten enough. As a result, I almost passed out when I sat up. They had to bring me juice and a snack and have me lie down for a bit.
Once it was over I asked the radiologist if I could go over my questions. My primary questions – why I had been assigned a surgeon, why was I in RADS, what did they see. Her response is frozen in time for me. She went over the probabilities of mammogram and ultrasound images along with the high level of skill and experience at reading these scans at this centre. She said when they see something, they rank it as <10%, 10-25%, etc. The top being 95% or greater. In my case it was 95% or greater but in my case they were 100% sure and even if the biopsy came back negative they wouldn’t believe it. She was VERY blunt. I have a carcinoma.
I literally stumbled out of there. I was still feeling weak and quite frankly I think I was in shock. I got downstairs and sat in the cancer centre trying to pull myself together to drive home. Suddenly I heard someone call my name. It was one of the women from The Ottawa Hospital Foundation. I know her through work with the OTTAWA Hospitals Presidents Breakfast and The Ride. She took one look at me and said “are you ok, you don’t look well.. then she paused and said oh no”. I started to weep a bit. She is a wonderful kind woman and she sat with me until I could pull myself together to drive home.
From there, it was a matter of waiting for the biopsy results so we knew what kind of cancer I was dealing with. I ended up telling my son Kyle since it was just too difficult to pretend at home. I had wanted to wait to tell the other kids until the biopsy results were back. However, after a few days, Kyle told me he couldn’t stand not having the other kids knowing. He needed the support. Those were difficult calls. Each of my four kids responded in their own unique way – all in line with their personalities. There were a few tears, some anger, some denial. Wow – writing this brings all those emotions right back.
Speaking of fear, I have to tell you that the first month of my diagnosis I was terrified. I was self medicating – wine being the elixir of choice to try and sleep. Given what I will explain below I felt it was quite likely I had this cancer for a long time and feared it had metastasized.
I had been so busy with work and work travel that I had missed my annual mammogram the previous fall. I have had annual mammograms since age 40. I wasn’t too worried though. I had gone years without anything. Although, over the previous six months I had noticed something – but that wasn’t new. I was never really able to do self exams due to fibrous tissue. Plus, my doctor had always told me there was no increased risk for dense breasts – WRONG, as I was soon to find out.
On September 12th, 2018 I was driving home after the Ottawa Hospital’s President Breakfast. I had just heard incredible stories of survival as a result of the incredible work being done at our cities world class hospital.
I happened to have CBC on and they were airing a story and experts from an episode of White Coat, Black Art that was going to air the next day about Breast Density and Screening. They were interviewing one of the founders of Dense Breast Canada. She was talking about her diagnosis of stage 4 cancer and why it was missed. She pointed out that most women with dense breasts in Canada aren’t told. She said not only is there a proven increased risk of cancer with dense breasts but it is often found at a more advanced stage because it is so difficult to spot on a mammogram (think snow ball in a snow storm).
I got home and booked my mammogram that day. Unfortunately the appointment was 2.5 months away.
The funny thing is that CBC program made me more aware. In October I started noticing something in my right breast. By the time I went on my annual Isla Mujeres trip I was noticing my breast was a bit misshapen and a it was uncomfortable when I laid on my right side. In passing, I even mentioned to the girls that I was looking forward to my mammogram. (That’s just weird! What woman looks forward to that. Right?!) However, at the same time, as we women often do, I was dismissing it – truly believing that hearing that CBC interview was playing with my mind.
Well, turns out not!
So here I am one year later, 3 plus weeks in the hospital after becoming toxic from my last 2 rounds of chemo. Thankful that my oncologist is confident that I will be cancer-free at the end of this!
I certainly couldn’t imagine I would have 18 rounds of chemo (and still counting if my oncologist has another one up his sleeve to replace this one that made me toxic), surgery, radiation, more surgery to come.
I am still trying to figure out how this has changed me, my life choices and my outlook for the future.
I do know I want to travel more, explore both near and far and continue to be curious. I am getting better at being in the moment and truly taking in the details of my surroundings (it is crazy the things I have noticed that have been around me for years).
I do feel blessed that I have felt such deep love and support from so many people in my life this past year. That has touched me in a way words can’t do it justice.
Cancer survivors often talk about the blessing cancer bestowed on them. The spiritual change and even enlightenment. I wish I could tell you I am there. I hope I get there. I think I have a small start. Right now I am just plain exhausted and quite frankly – fragile. The only thing I can think about is regaining my strength and energy.
I want to end this post with a great big thanks to all my friends and family for the INCREDIBLE support, friendship and laughs you have provided this past year. You have kept my home full of flowers, cards, Lululemon, a yoga cushion, salt lamp, hand made blankets, bath tea, teas, books, gummies (guess what kind), puzzles, soup, scones, muffins, healthy food, cheat foods, house cleaning, so many thoughtful and helpful gifts. You have taken me to chemo, doctors appointments, fed me in my your homes, fed me in my home, carted me around on a tandem, provided me with inspirational T-shirts, tattoos, custom kick cancer in the ass cookies, kick cancer in the ass socks, a spa gift card (can’t wait to use that), cozy socks for the hospital, an awesome electric shoulder and neck massager, huge basket full of everything I might need – even toothpaste to help with mouth sores (which I didn’t ever know existed). Not to mention, a new diaper (more on that in a future post – I bet you can’t wait for that one) and a foot bath and foot massage while I was in the hospital. Most importantly, you have listened to me and made me laugh. I am one grateful lady!
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Below is a update I wrote yesterday. I thought I had published it last night. Just realized I didn’t. Sorry folks. I will do another update tonight.
It is looking good for me going home on Friday. The Doctor is cautiously optimistic. I would say the very latest would be Monday.
Today they are testing taking me off the Octreotide, after weaning me for a couple of days. It is going well, unlike when they tried last week which resulted in a big set back and an increased dose. I need to be off this before I go home. Quite happy since that shot hurts. The other drug I can take in pill form at home. Except the blood thinner shot. It is a mandatory shot as long as I am here. That one doesn’t hurt.
I felt a bit fragile today. Light headed and woozy. They didn’t want me to walk outside the ward as a result. I didn’t have a great sleep and may have walked too much yesterday so I stuck to my bed for the most part today. Plus they are weaning me off a lot of things so that might be contributing.
My digestive system and bowels have started to work again. Although I still bloat up every time I eat and drink. The Onc says the sounds in my stomach are now sounding healthy. Huge progress. I know TMI – but this is what all my days are focussed on. It is hilarious how much focus there is on the bowels in this ward. Little charts in the bathroom. Nurses and I joke about it.
They are still weaning me off the TPN and I am not on a normal diet yet. They will do that over the next couple of days. I actually get to be unplugged during the day and walk without a pole! It’s too bad I felt fragile and couldn’t take advantage of it much today.
My feet aren’t good. They have started to peel like my hands.
Most of the peeling is on my fore foot but the bottom of my heals are starting to peel as well.
However, my hands are much better. I still wear white gloves to do many things since pressure hurts (I think that is also from the neuropathy) but the inflammation has gone way down.
I do plan to get a facial, mani and pedi as soon I can. It’s been over a year since I had a mani/pedi and many years since I had a facial. After the nasty spots that appeared on my skin 2 weeks ago (which are starting to fade) I want a facial to get rid of dead skin and toxicity. I think I have earned the right!!!
The weird thing is my nails are the best they have been since I started chemo last January. They actually improved on this chemo!! Weird right?! Chemo is a random motherfucker! Ohhhh, I am getting quite comfortable with this angry language.
Oncology is a tough ward to spend an extended amount of time on. The nurse was saying it takes its toll and you really have to be a certain kind of person to work this ward. No doubt.
It was a bad night last night!
There is a patient here that had a reaction to a blood transfusion. My nurse had been with her since she got here last night. Poor woman, all rashed. In bad shape. Very loud, screams and moaning. Several nurses by her side for hours. She is doing well today thankfully.
I am now understanding why they don’t like doing transfusions when you are undergoing chemo unless as a last resort. There had been discussion from the nurses about transfusing me a couple of times this last year but Oncologist said NO. I am very thankful they didn’t!
I have been wondering what happened to the 30ish woman whose room was beside mine when I was in isolation. I saw her everyday once I was able to start walking. She was pretty good at first, but on oxygen. I saw her go downhill every day. All the family was here for two evenings (8 plus people) then suddenly she is gone. I found out she passed. Really upset me.
There was another man coughing up blood last night. Nurses discussing what to do at my door.
This morning, there was a gentleman in the patient kitchen with me who has a massive growth on his throat.
It is all so heartbreaking!!
I usually have my noise cancelling headphones on so I don’t hear all the goings on. I didn’t last night and I found it all really hit me. It took a long time to go to sleep as result – despite the sleeping pill.
On the upside there was an adorable doggie here yesterday. He was visiting his owner (a nice man in his 30s who is getting his chemo infused here. I think it is amazing that they let pets visit (as long as they have all their shots).
My new roomie is a type 1 diabetic (diagnosed at 56 years of age in 2004 with Type 1, which is unusual since Type 1 is a juvenile disease). She now has pancreatic cancer 😦 . She is a sweetheart (originally from Wales) and coincidentally lives about 1.5 kilometres from me. She was admitted a couple of days ago and the plan is to release her on Friday.
I continue to travel the world with Anthony. We went to Croatia, Japan, Finland, Baja, Penang and Sydney today. Another heartbreaker I haven’t recovered from – such a loss.
Ok doom and gloom aside….
Hopefully they will move me to a normal diet tomorrow and do some further weaning from the TPN.
Getting hooked back up to TPN shortly. I plan on taking a sleeping pill and falling asleep with Anthony while wearing my noise cancelling head phones. Maybe I can forget where I am and what’s happening around me tonight.
I received a wonderful gift. The Oncology Clinic Manager brought it to me and explained the whole story about the development of these kits called Kait’s Comfort Kit.
Kait was a young woman who was diagnosed with cancer at the age of 19. She was from Prince Edward County. She spent quite a bit of time on this ward. Ultimately, passing away here on April 19, 2018 at the age of 23. My nurse was here for that and was telling me how challenging it was for the whole staff and what a wonderful family she had.
The Manager was telling me that during her stay she found there were things lacking that she wanted to rectify. Particularly for patients in hospital for an extended stay. Hospital face cloths and towels are like sandpaper. She wanted patients to have soft cloths, crosswords and pens, nice cream and soap. Other comfort items. Her family promised to do something about it. It took a over a year but the family was able to deliver on her wish and create these wonderful kits in September of this year.
It is amazing how someone facing what she faced was still so focussed on helping others.
Wasn’t she beautiful. What a great smile!
Click HERE for a news article about these kits. It is worth reading. Very touching.
Today was another good day. It is so amazing to be eating food again. Oatmeal and mashed potatoes have never tasted so good!!
My system is still not working right but there’s evidence of progress each day. I asked the Oncologist if there is any chance I could be out by the weekend and she said it might be possible – a glimmer of hope. Yippee.
She said everything has to be working well and best to go slow. Apparently, things can turn bad quickly if released too soon. I might end up re-admitted, ultimately spending even more time in the hospital.
I am still pretty weak – not strong enough to be bored yet. Shockingly. So I will do as I am told. However, given how I much I have improved in the last 48 hours. I am hopeful.
I finally agreed to the shoulder X-ray. They have been concerned about my shoulder pain due to this type of cancer’s tendency to metastasize to the bones. I said no last week since I was 100% sure it was muscle/nerve related. I was right!! Nothing there. Very happy to say “I told you so”.
Today they removed two of the 3 pumps I have and I have gone from 5 bags of various drugs and concoctions two days ago to just one bag of nutrition still running 24×7. Tomorrow they will cut the time to 12 hours but pump at a higher rate. I will still get almost the same amount of nutrition. From there they will try to ween me daily as I eat more. I am still getting way too many needles in my stomach. My poor swollen tummy is covered in bruises.
My WBC and RBC and Neutrophils are still way below normal but seem to have stopped their continual decline. My blood pressure has now increased to a level they are happier with.
I am on what is called an “easy chew” diet. YUP, feeling a bit ancient! Between that, my new hair growth which looks like my grandma’s weekly “shampoo and set”, spending two weeks in diapers and Depends, the pole I have been walking with and the muscle loss – I feel like I am about 35 years older. (In fact one of my friends who visited the day after I was admitted said I looked 35 years older that day. Luckily she says I have reverse aged back – now that I am hydrated again).
CHEMO IS A MOTHERFUCKER! There – I finally said it.
This is what I feel like and pretty much look like.
It’s been a good day so far. I actually got a decent amount of sleep last night. Only the second time in 3 weeks. Wow – what a difference sleep makes.
I was able to have a shower today, which was LOVELY.
At lunch I finally got to test out food. It’s is the first time I have eaten since the morning of November 11th – 3 weeks.
FOOD! Finally.
So much better than this..
Believe it or not that was better than what I had been having.
Unfortunately my Hemoglobin and Red Blood Cells are very low and my White Blood Cells (WBC) and Neutrophils have been dropping daily. So they are monitoring that. When I was first admitted, my Neutrophils were dangerously low .43 (dropped from 2.9 to .43 in only a few hours). However they gave me those bone marrow shots (you may recall the expensive shots I had at the beginning of this process) for 3 days in a row. They worked. My Neutrophils shot up to 14 and my WBC was 21.5. As of yesterday my Neutrophils were 1.4 and my WBC is 2.4.
The other challenge now is that I have gone from one extreme to the other. My bowel is now lazy with nothing happening since Saturday. They say this is typical. It takes a while for it to heal and work.
The good news is my Electrolyte Panel is now normal thanks to the TPN (picc line nutrition). This has been my source of nutrition for the last couple of weeks. There has been 5 different bags on this at some points.
There is still no ETA on when I might be able to go home. I was talking to my friend Gail on the phone Saturday night. My nurse came in while I was on the phone. She overheard me say I was hoping I would be out be Wednesday. My nurse (very nice, jolly woman) started laughing hysterically. So I guess that is a NO. My Oncologist confirmed today that this is not likely.
In the meantime I continue to travel the world with Anthony Bourdain. Eating vicariously through him. Today I was in Mozambique and Kansas City.
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