This is just a quick post to update friends who have been reaching out and I haven’t responded to.

A lot has happened since my last post. I started my new chemo treatment on October 7th. If was the first of eight, 3 week rounds of chemo that would end mid-March 2020.

It didn’t go well right from the beginning. Just over 2 weeks ago I was rushed to the hospital with fever, extreme abdominal pain, vomiting and diarrhea.

I have been in the hospital ever since with no idea when I will be out. I was in isolation for the first 8 days but moved into a regular room last weekend. When I was first admitted they told me it could be weeks. I didn’t believe them, but it is now looking that way.

I have several things going on but the main issue is my entire digestive system – stomach and bowels have shut down due to chemo toxicity.

I was on a NG tube for a week and have a double picc line for nutrition and fluids.

I am on a lot of meds and get way too many painful needles ever day. I am very anaemic. I am very weak.

I have lost 16 pounds in two weeks. I have not eaten any food for 3 weeks. I was on ‘no food or liquids’ for over a week but started on liquids late last week and they are slowing testing out thicker fluids. There have been setbacks.

I haven’t been able to type since I have had bad hand and foot syndrome. My hands were so burned that the skin has been bubbling and peeling off. It’s been too painful to type. In fact my phone keyboard wasn’t even responding (it was like typing with gloves on). Siri sucks – I was trying to use her to send texts. Some crazy messages as a result!

Now that the skin has come off they are quite raw. Apparently what you see on my hands is what is happening in my stomach and bowels.

I am too weak and tired to be bored. I feel like I have been through a war.

Interestingly, I am obsessed with food shows right now. Something I don’t normally watch since I prefer to be in the kitchen cooking myself. However, I have been binge watching food shows for days. Some think I am torturing myself. But it is satisfying my brain and my love of cooking, food and travel. Whatever works, right!!

I am working on a very detailed play by play blog post. Mostly for my own benefit since I want to journal it. There are a lot of details that may bore a few of you so this is why I am doing this short post for now. I will post the detailed one in the next few days. In the meantime, now that I can type a bit I will try to provide daily updates.

I have had a ton of visitors which has been wonderful. The Oncologist and nurses raised concerns about the visitors this week – telling me it needs to be limited so I can rest. You are welcome to come by for a short visit but please text or message me here first. I am in the Oncology ward at the General – room 5105.

Today has been a good day so far. Maybe I will get out this week 🤞

It is hard to believe it is Thanksgiving already. Time has flown, crept and fled. Never has my time been consumed in such a fashion – totally focused on my basic needs. I am missing my bigger life but at the same time reflecting on all the small things I am thankful for. Being thankful everyday has been critical to keeping a positive mindset. Some days are rough and the only thing I am thankful for is my Vitamix. Other days the list is long and deep. Regardless of what it is, it generates good vibrations.

My mood has improved since my last post. I was in a bit of dark place after going through that scare and wondering if I am going to continue to have more. That combined with the news that I would have more chemo after radiation really brought me down. However, I self-talked myself past that and got back into battle mode with the daily trips to radiation.

Speaking of thankful and radiation, I am thankful for my bike. It made the daily trek to radiation enjoyable. It was a beautiful, flat, 20K rode trip, bike path for 95% of it.

Radiation went well. My skin got a bit burnt and I had a rash, but nothing too serious. The worst part was the fatigue but I am used to that. All in all it went well and much much easier than chemo. I finished a couple of weeks ago and by last weekend I was feeling much better. In fact, last weekend I felt the best I have felt in 10 months. So I went on a tandem ride with some friends to Wakefield from Gatineau Park. I was actually able to put in a good effort for a change and I wasn’t totally wiped out like I have been the last few months.

I didn’t get much of a break before chemo started – 11 days. I started my 17th round of chemo last Monday. The plan is for 8 three-week rounds of chemo. As I mentioned previously, this is a drug that just moved from trial and has shown great success for treating triple negative breast cancer that did not have a complete pathological response to neoadjuvant chemo – reducing re-occurrence from 44% to 31% and death from 31% to 22%. It is worthwhile enduring this to improve those numbers.

It is a different protocol this time. Rather than having to go for infusion ever three weeks, I have pills. I take 8 pills in total a day split over morning and night for 2 weeks, then I have a week to recover. To quote my oncologist “it is miserable, but not as miserable as my previous drugs”. There is a 4 page handout of side effects. The most common ones are hand and foot syndrome, mouth sore, fatigue, nausea, vomiting, diarrhea and abnormal liver numbers (this can be severe and result in yellowish skin or eyes). There are a bunch more less common side effects. I am supposed to avoid the sun. One side effect that I am experiencing that is less common is dizziness. I don’t have it all the time but I do get it. I have drugs to deal with the side-effects but I haven’t had to take them yet. I find I don’t feel well for a couple of hours after taking the pills but bounce back after that. This first round is a lower dose to see how I do.

The last 6 weeks have been busy with daily trips to the hospital and some visitors. My aunt, brother, dad and his wife and Stephanie all came to visit. Stephanie was here for 10 days right at the end of radiation. She timed the visit to help me out when my fatigue would be at its worst. We had a very relaxing visit. We even made it to a cottage for a few days and just laid low watching movies and relaxing on the dock. The other thing I did was ‘The Ride’ for cancer research. I have been involved with this for years and was determined to do it this year. I wasn’t strong enough to do it on my own but my friend, Mike, offered to be my tandem buddy. He is so strong – I didn’t have to do a thing.

Now that I am healed from surgery, finished radiation and have a bit more energy I am trying to regain some strength. I am still dealing with the effects of chemo. My oncologist says it should get better but often takes a year. I am attending some strength and stretch classes at the Cancer Center geared to breast cancer patients. It is a good place for me to start. There is a women in my class who is about my age. She had the same initial chemo as I did. She was hospitalized after the first round and by the third round they just kept her in the hospital. They had to stop after 4 rounds since her doctor said her body couldn’t take it and the chemo might kill her. Her cancer was caught early and they didn’t feel there was enough benefit continuing. Hearing her story made me so thankful for my strength and fitness going into this. My radiation oncologist told me this at the beginning but you don’t realize how valuable it is until you hear other people’s experience. I look forward to getting back to that fit place and thankful that I believe I can get there.

Unfortunately, a tiny set back, I came down with a cold virus yesterday. It has really knocked me down today – body aches, headache, stuffed up. I am hoping it passes quickly.

I hope everyone had a wonderful thanksgiving with their family and friends. I spent it on the couch watching movies.

To sign off I want to share some images of some of the things I am thankful for. One of those things is the support I have from friends. I have received so many thoughtful gifts it is hard to capture – flowers (so many flowers that I went 6 months with fresh flowers the whole time), food, cleaning, baking, motivational socks and t-shifts, bath products and on and on. The most recent gift is these awesome cookies that one of my girlfriends had made for me – one cookie for each of the 24 weeks of chemo I am now having.

I am so thankful for all the support I have. It has truly been an upside of this whole ordeal.

To sign off, I want to share some pictures of some of the simple things I am thankful for, after I give thanks for my family and friends.

It isn’t cancer. Yippee!! It is something called Fat Necrosis.

This explains it quite well also.

I am not sure why I have this as some spots aren’t near my lymph node incision and I have not had radiation yet. So that part can’t be explained. Anyway – I don’t care. It is not cancer so radiation is a go and I can move forward.

I don’t think I realized how much this was weighing on me until I got this good news. I feel so much lighter right now!

“How can you change who you are and learn what it takes to get up, over and over, if you can’t allow yourself to feel how much it hurts to be knocked down?”
― Sally Field, In Pieces

I have spent the last month trying to forget cancer, trying to do normal activities, be off the grid, be outside every moment I can, contemplate something other than cancer and most importantly – heal. Like most things in life, it did go quite as planned.

I had a couple of weeks of reprieve. Then at the beginning of August the appointments started up again. August 2nd I met with my Radiation Oncologist (RadOnc- Dr. Lochrin) to discuss my treatment plan. At every appointment, no matter which Doctor, I get examined at least once – most often twice since there is often a Fellow or Resident who sees me first (they feel for lumps in my neck, stomach and armpits). They are constantly asking if I have headaches, bone pain etc. At this appointment, the RadOnc noticed lumps under my arm. One of them quite close to my incision. She immediately called my surgeon – since she is the one who last examined me and has examined me a number of time since the beginning. Dr. Roberts, was in surgery but came over to the cancer centre between surgeries to examine me and confirm the lumps were not related to the surgery and seemed to be new. (As an aside, the care I am getting has been incredible. The fact that Dr. Roberts responded so quickly and came over to examine me with Dr. Lochrin was above and beyond in my books. I really do have amazing, responsive care. I make sure I give them this feedback constantly. I am so grateful. That said, it is consistently clear they are concerned about this cancer spreading. I am glad they are on it and at the same time their concern is unsettling,)

These lumps have kicked off a bit of chaos. They decided to go ahead with the radiation planning and scheduling. In the meantime, they would book me for an ultrasound to examine the lumps. I had a CAT scan and got marked up for radiation. I refused to have tattooed reference points (I don’t want the reminder – no mater how small they are) so they marked me with sharpie lines, covered in tape. (Given the delays in treatment starting that wasn’t such a good idea. Once treatment starts they will refresh the sharpie. However, it has been two weeks of sponge baths and trying not to sweat. The marker has come off in one spot. Also Dr Lochrin says they may need the reference points for future treatments (discouraging comment). So I may rethink this. Apparently, I can have laser treatment to remove them. I only care about the one in the middle of my chest so maybe I will get some tattoos and some marker. Will see)

Radiation was scheduled to start August 22nd. In the meantime, they told me they would schedule an urgent ultrasound. The requisition for this got mis-routed to the general imaging department versus breast health center. After 10 days, when I hadn’t received an appointment, I started calling. I was bounced around and told they would need a radiologist to review the request before booking it. I would be contacted in 2 weeks. WHAT!!! Not happening! I had to explain to the booking clerk why that was an issue – doctors needing to know what this was before beginning radiation since it would change my whole treatment plan. This is when the booking clerk realized the requisition was marked urgent. Two people got on it immediately. I had the ultrasound in 2 business days!

My care has been amazing, but the hospital is like a big machine with many moving parts. You have to be on it – taking an active role and advocating for yourself. I always deal with the hospital staff with respect and empathy. Asking their name and using their name, acknowledging how overwhelmed the system is, how tough it must be to get urgent appointments scheduled. Thanking them by name for their help. I find they are always willing to help and find a solution quickly if you do so. There have been a few examples like this over the last 9 months.

I had the ultrasound on August 18th. I knew they saw something when the Radiologist returned to the room with the technician. They confirmed they saw two spots (they can feel 6 spots but it seems there are 2 they want to check out) and I needed a biopsy. This is when it became chaotic. They had to postpone radiation and try and get an ultrasound guided biopsy asap. This proved challenging. I was getting many calls from Dr Lochrin and Dr Roberts as they tried to come up with a solution quickly. It was decided that my surgeon, Dr. Roberts, would do the biopsy without ultrasound last Wednesday. (Aug 21). However, when I got there she realized there are a number of lumps (I think it was 6 in total) and she wasn’t sure which one to biopsy. She worked her magic and convinced a Radiologist to jump and do another off-the-record ultrasound (they are always supposed to be pre-booked) and they both looked at the lumps. They decided that 2 are likely cysts, 2 I am not sure about, 2 are of concern. The challenge is that one is deep and she realized she couldn’t really do this biopsy. I did need an ultrasound-guided biopsy. So they delayed radiation again and I had this biopsy on Monday. They put two more clips in me – one for each of the two spots. (I have a lot of clips in my body now). Now I wait! The pathology is on some kind of super rush. I was scheduled to have radiation today at 9:15am but the Oncologist called late yesterday to say she spent 30 minutes on the phone with the Pathologist and the results are not final so they delayed my radiation to 3:45pm today and they hope to have final pathology results today. If not they will delay again. So my life is kind of on hold again.

These last 2 weeks have felt very much like last December. It was hard the first time. It is not much easier this time. I was at the hospital 4 days in a row last week. I had my 6th procedure in the breast, armpit area – including surgery. I am doing my best not to worry – but that isn’t so easy. People like to say “I am sure it is nothing”. Please don’t! I get furious for every moment in this process that I have felt dismissed. How can you be sure when the Oncologists and Radiologists are not sure. It is important to acknowledge the concern is legitimate. That is the best way to support me. I am not one to overreact – I have measured concern but I have a right to feel concern. Please acknowledge that.

Back to my attempt at normalcy ….

I succeeded at being in nature thanks to great weather, friends cottages, my SUP, my bike and my backyard. Since I was enjoying the bright days outside whether resting on my chaise lounge in the backyard or getting out on my bike – it automatically led to being offline most of the time.

As for not contemplating cancer and healing, I won’t say I failed, I am just not where I want to be physically, mentally nor emotionally so it is always present. Some say I set the bar too high. I say, I need the bar high since I want to get back to being ME as soon as possible.

Some things are healing well. My surgeons say I am good healer – my surgical scars are healing well. The rest of me, well…. the rest of me is very much a work in progress. I will have a couple of days where I feel quite good and have good energy. Then I am wiped out – similar to how I felt the first few months while on chemo. (I went to bed last Saturday at 3:30 in the afternoon, and didn’t get out of bed until 8am the next day).

I know I was pushing too hard. I approached the last month with more of a training mindset than a healing one – hoping that this approach would rebuild strength – but that backfired. A friend is who is a nurse by training and now a senior executive at the hospital, corrected me when I used the word “training” while we were cycling, reminding me that my focus must be on “healing”. It was an important correction and I am now approaching what I do with more of a “healing” mindset. As I have said previously – words matter, words have power, words can change mindset. Those words combined with the exhaustion I was feeling have lead to a change in my behavior.

My body hurts and despite stretching and myofascial release it doesn’t seem to get better. I feel like I have aged 20 years. Of course as we age we all have this, I had some aches and pains before chemo, this is different, this is a sharp decline in a short amount of time. I feel like a completely rusted tin man. It upsets me and I have moments where it scares me. As a result, I have not been successful at putting cancer out of my mind, it is in my face everyday all day. In my dark moments I wonder if it is chemo or cancer causing the pain. It is very difficult for the mind not to go there. I am told this is normal, particularly at this stage. I will get better at managing this. One way is through massage. Now that I am healed enough to lay on the table I have started back with massage. I think if I can get my body feeling better my mind will follow. So I have booked weekly massages that will focus on my legs and feet. (The upper body will be off limits during radiation).

At my last appointment I expressed my concern and frustration with my body to one of the doctors. He told me that studies show that although fit people like myself seem to get through chemo treatments more successfully (no hospitalization, no infections, heart damage, better able to handle the side effects, etc) they often have a much more difficult time afterwards. He said people at lower levels of health and fitness are used to not feeling well. Their high was never very high so the fall is not as dramatic. They can more easily adjust to the after effects of chemo. However, people like myself, who were fit and very active, really struggle with the huge change. This doctor and my lymphedema physiotherapist told me that chemo really ages the body and I may have to get used to a “new normal” (typing this makes me tear up – I refuse to accept this). I will do everything I can to make this not so.

I wish I could post an upbeat, uplifting message telling you all how I am bouncing back, but I want to real. A bouncing ball is a good visual image of how I feel. At first when you bounce a ball, it bounces back quite high but as time goes on it doesn’t come back quite as high – well that is how I feel right now. People tell me I look great – so much better than even a month ago. Having colour from sun makes a huge difference for sure. I think because I look good people expect I feel good. However, I don’t feel so great and I am nervous about the start of radiation today (I hope), followed by more chemo. I am really starting to appreciate how long this process will be. My oncologist told me 2 years – meaning I have alot more to go.

I won’t apologize for being down right now. I think I have earned the right to have these moments. I do balance them with all the things I am grateful for – I have so so many. I self talk myself to death sometimes!

Speaking of self-talk… at moments I feel like I am channeling Sybil. Hence why quoting Sally Field at the beginning of this post felt appropriate!* There is some madness as the different voices in my head fight with one another to both process and manage all of this. The scared little girl, the mom, the logical economist/accountant, the fun seeker, the researcher, the planner, the impulsive free spirit, the athlete, the risk taker, the friend, the career woman, the wannabe Buddhist. Each ‘piece’ of me has opinions as to how I should plan or not plan my day, what I should focus on, what my 5 year plan should be, or should I even had a 5 year plan – just be in the moment for god sake!! I am used to being so busy that my mind has never had the opportunity to mender like this. It has been interesting at times – some radical ideas! Only time will tell if this will be good thing for my personal development or a rabbit hole. In the meantime, I will wait for my biopsy results and just plan the next few hours since lately that is all I have been able to do.

The song that is on repeat from my “Kick Cancer in the Ass” playlist:

*Sally Field’s 2018 memoir – Life In Pieces – is a fabulous book by the way)

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Yesterday was a long day.  Kyle and I were at the hospital(s) from 10:30am to 5:15pm – first at the Cancer Centre, then the Civic and then back to the Cancer Centre for appointments with my two surgeons and my medical oncologist.

As Kyle said, it felt like we were back at the beginning of this process since I had long appointments and take-away reading material then as well.

The day began with my oncology surgeon.  She was pleased with the healing of my incisions.  There is still swelling, nerve pain and quite severe numbness but that will take a few months to resolve.

There was good news and bad news from the pathology.  The good news is the margins are clear. Yippee!  The other good news is there is no cancer present in the lymph nodes.  This doesn’t mean there wasn’t cancer in them, it just means there isn’t now.  However my scans had looked good so there is a good chance it wasn’t in the nodes or it was early stage if it was.

The bad news is that the cancer didn’t have a complete response to the chemotherapy.  Not having a complete response is correlated with a great chance of the cancer still being present somewhere or returning and therefore a lower long-term survival rate.  It is not all doom and gloom though since I did have a good response to chemo and the cancer did shrink considerably.  However, due to the risk that I have cancer somewhere else in my body they want to see a complete response so they can be more confident that any metastatic cancer has been extinguished.  (The challenge is that this cancer can metastasize to other parts of the body even without going to the lymph nodes).  She suggested that when I see Dr. Sehdev in the afternoon I ask about getting into a trial they are doing for triple-negative. We discussed a few other things including life expectancy.  It was a bit disheartening to hear that I likely have a shortened lifespan.  She wouldn’t be specific other than to quote studies.  She did tell me if this cancer comes back it is likely to be somewhere else in my body so proactively removing both breasts won’t change anything (given breast density this is still on my mind).  Making it to three years without reoccurance is key and once I get to five even better. I will be admitted into a special breast cancer screening program for the rest of my life.

I also found out they took double the lymph nodes planned which means I am at risk for Lymphedema.  Therefore, I need to see a specialist who will give me exercises I need to do for the rest of my life to try and prevent it. Apparently prevention is key since once you get it it’s very hard to get rid of.

The second surgeons appointment with Dr. Frank was more routine. We discussed timing of my next surgery which likely won’t be until 2020 at some point – once treatments are completed. He gave me the ok to start doing some light exercise and not too strenuous bike rides. Reminded me about the need to let my body recover. It will take a few months to recover from the surgery let alone the chemo.

The third appointment was with Dr. Sehdev my Med Onc. That one was two hours. We saw a nurse, a resident and then the resident and Dr. Sehdev met to discuss the plan.

Since I’ve not had a complete response, I will be having radiation and more chemotherapy.  I didn’t meet with the Radiation Oncologist yesterday so I’m not clear on the radiation plan. That will happen in the next couple weeks along with some additional tests – CAT scan and others. Unfortunately, when radiation is finished I will have 4.5 to 5 months of chemo (6-8 rounds). Sucks!!  However, I will have pills versus IV.  I will have pills I take morning and night for two weeks and then I have one week off.  There are a number of side effects but he said it shouldn’t be as bad as before. The one bad side effect is hand and foot syndrome.  This was something I suffered with last time so that one is a bit concerning.  Apparently I need to proactively use bag balm before chemo starts and keep my hands and feet coated with it during chemo to prevent my palms from cracking and bleeding. He said I may not lose my hair (which has finally started to grow back-in the last couple of weeks).  I have an info sheet with the various side effects; a lot of them are similar but hopefully not as extreme.

I will say, I feel blessed that I didn’t have this cancer 10 or even 5 years ago since they really have made some good progress in strategies to fight it in the last few years.

I will be taking the drug used in the trial that Dr. Roberts referred to. The trial is over and this is a new treatment.  They provided me with the trial research paper and the results that came out of the study.  There are a few statements and numbers in this study that are scary to me and make me grateful I have this option. “Patients who have residual invasive breast cancer after the receipt of neoadjuvant chemotherapy have a high risk of relapse and poor prognosis.”  However, this drug is supposed to greatly improve that.  The chart below does show a better outcome in terms of reoccurrence and 5 year survival rate using this chemo drug.

I spent last night trying to recall and process all the information I heard yesterday.  I am so grateful my amazing, wonderful, emotionally intelligent, kind and considerate Kyle was with me.  It was a long exhausting day for him as well.  He’s been a great source of support and counsel.  He is one of the main reasons I booked my mammogram in the first place – I guess we can thank each other for the gift of life now! Lol.  He has attended every important doctors appointment since my diagnosis.  He gave me great advice for my surgery decision after helping me evaluate all the information.  He’s been so good at remembering all the things that we hear during these appointments and has helped me keep perspective when I get stuck on one thing I heard.  So so so thankful for his support.

I’m confident I’m beating this.  I don’t spend time worrying about not surviving.  The survival rate stats are on my side.  It is just turning out to be a more gruelling process to beat this than I had thought it was going to be.

I have more to say but I have to save it for another day since I’m heading to a cottage to relax, recover and distract myself.  Unfortunately I still have bandages and can’t really swim yet but I will float and dream of all the things I will do once I beat this.

Hi all,

I do apologize for being MIA. Everything has hit me the last few weeks. I have been writing and may share some of those thoughts at some point but for now I wanted to briefly check in. It has been over 7 months and it has been getting to me. I have had a couple of little get-aways to help deal with that and the anxiety about the pathology and next steps (more to come).

I got an early call this morning from the cancer centre. My pathology is in and my Oncology surgeon (Dr. Roberts) wants to move my July 23rd appointment to this morning. That has me quite anxious! At the same time it is very convenient since I have an appointment with my other surgeon (Dr. Frank) and with Dr. Sehdev this afternoon. Today will be a big day.

My surgery went well. The surgeons were pleased.

Feeling quite nauseous and have vomited a few times but otherwise I am doing well. The hydro-morphine is managing the pain.

I will post more once I feel less nauseous.

Thanks for all you texts and messages of support.

Hi, it’s Marian for Meg.

Meg didn’t get a chance to post before she went in for surgery today (there are only so many hours in a day and that lady fills them all) but asked that I let everyone know how thankful she is for all the positive wishes, prayers and healing thoughts being sent her way (keep ’em coming).

She is expected to be out of surgery in a couple hours and should be home later this afternoon. Her spirits were good going in and she’s in the best of hands. I’m sure she’ll be posting (or dictating a post) as soon as she can.

Thanks on behalf of Meg

We made it to Kingston.   Captain Saint John did all the work!