Round 8 has pretty much been the same as round 7. In fact, even the picture from March 26th looks the same as the previous week.

Marian was my chemo buddy for round 8. Always a laugh with her!

I did mention to the chemo nurse that I was still feeling some discomfort in my chest.  She said it was likely inflammation from the line moving.

Yesterday I had my picc flush, bandage change and blood work done. I mentioned to the nurse that I’m still feeling discomfort in my chest. She said she was going to report this to the picc line department. I received a call this morning and I’m going to be going in today for another adjustment. The nurse/technician/radiologist (not sure what she is) thinks I’m having heart palpitations. She said that some people have tissue that doesn’t respond well to the picc line and creates these palpitations. It could be that I have the tissue at the lower part of my vein as well. I told her it looks like the picc line has gone in deeper again (I compared it to the picture I took, less line showing). It will be a long day at the hospital today but I am sure it will be worth it – I am really hoping this works and this feeling goes away.

My blood work shows that my immune system has weakened slightly. Given I’ve spent the last few days feeling like I’m fighting something (headaches, ear aches and sore throat) this wasn’t surprising.  My WBC and other immune system indicators are lower.  However, my RBC and Hemoglobin has improved.  I expected to see that as well since I find I am not as winded climbing stairs and walking.  It is still low but going in the right direction! Very happy about this.

I’ve been laying low this week.  Mitch, Kyle and I have done a couple of things but for the most part I have been taking it easy.  This discomfort in my chest being one of the reasons; feeling like I am fighting something the other. (Every once in a while I lift something and have a chest pain.)

Today will be round 9.  Mitch will be taking me.  Chemo can be a bonding experience!!

BTW, I finished a fabulous book this week. The Nine lives of Charlotte Taylor.  This seamless blend of biography and non fiction is the story of a pioneer woman who helped shape New Brunswick in the late 1700s. Charlotte Taylor was the great-great-great grandmother of the writer, Sally Armstrong. This story of the hardships and joys of this courageous, trail blazer of a women is truly inspiring.  It is a reminder of what we women are capable of – strength far beyond what we can imagine. It was a great read for me at this particular moment of my life. I am looking forward to discussing it at book club next week.

Spring is coming – the duck couple have returned! I saw them waddling in the snow across the street this morning.

Today will be the half way point – 8 rounds down, 8 to go! What makes today even better ….my son Mitch arrives for 11 days. I can’t wait!!

As a follow up to my Saturday post – IT WAS A GREAT DAY!  I actually went for a ski in Gatineau Park. It was the first time since this whole chemo ordeal started. I didn’t want to end the winter with that sole crushing ski attempt at Mooney’s Bay.  Mooney’s Bay is no longer skiable so the Gats are the only option. We skied from Lake Phillippe (P19) on the 50/55. It was incredibly challenging for me. Thanks to my low RBC and Hemoglobin I don’t have the cardio strength to ski the hills so pretty much have to slowly walk up, taking many breaks. Not being able to use my right pole adds to the challenge. (Although I did cheat and use it a few times – which didn’t feel good). The ski was much more difficult than I expected … but I DID IT! The downhills were fast – it felt so incredible to jump in the tracks and scream down those hills. It was like the season of suffering was coming to an end! I felt empowered; trusting that I can push through anything.

On the way home I started feeling some discomfort in the right side of my chest right around where I believe the picc line ends. I got home and zonked out, still feeling some discomfort. The discomfort continued on Sunday. I had my picc change and flush appointment Sunday morning so I mentioned it to the nurse. She said it was likely just some irritation from the picc line moving around in the vein. Seemed reasonable to me. I noticed the picc line flush was uncomfortable this time. At bedtime Sunday I took a T3 in the hopes it would reduce the inflammation and related discomfort.

Early Monday I headed to the Riverside campus for my Rheumatology consult. The doctor was amazed by my knowledge and understanding of all the blood work, chemo interactions, and more. (If you are curious by nature – cancer can become a crash course in medicine.)

I didn’t learn much at this appointment. Apparently I don’t have Lupus. (I didn’t know that was even being considered but Lupus-related Raynauds is a thing). This doctor said she has no idea why someone with Raynauds can’t have radiation. She said there’s more testing they can do but she needs to consult with my Oncologist first to understand the concern. According to her, if I do you have Raynauds they can put me on blood pressure medicine. Not happening! One, I have low blood pressure, I don’t need it to go lower. Two – until now I have never taken any long term prescription drugs and don’t want to start. Three – I have enough going on. That is where it was left. I will wait and see what comes out of the consultant with my RadOnc.

From the Riverside, I headed to the Cancer Centre for my blood work. Very pleased to say that my blood work has stabilized. Virtually no change since last week. My WBC, RBC, Hemoglobin, HCT (Hematocrit), Neutrophil and Lymphocyte remain low. My RDW (Red cell distribution width – another indicator for anemia and/or presence of cancer) remains high. My platelets are normal. I’ve been monitoring my magnesium, calcium, potassium levels as they were starting to get low. I have been using diet and some allowed supplements to impact these levels. They have increased! I expected this, since the leg cramping I was getting has disappeared. It is so interesting to have weekly blood work and try to influence some of these levels through diet. I like to find any little thing I can to feel I have some control!

After my blood work I met my girlfriend Marian at the hospital. We had planned to have coffee/tea together. I mention my chest discomfort and the fact that I didn’t really want to call patient support but I was considering dropping by the area where they do the picc line insert procedure and just asking a nurse (much faster and easier and I figured the nurse would put my mind at ease). Marian insisted I do so. I may not have of otherwise. However, there was the voice in my head….

[Side Story....There is a voice in my head that forces me to listen. It is the voice of Dr Edward (My great OBGYN who unfortunately was wooed to the States). He operated on me after my ruptured ectopic pregnancy (that I walked around hemorrhaging with for 15 hours before emergency surgery). He told me in his entire career he had never heard of anyone having an ectopic pregnancy rupture and not be unconscious with the pain and bleeding. He told me I had a high pain threshold and that I need to listen to my body carefully and not dismiss things. That advice has served me well. It helped get me in for a mammogram a few months ago – thankfully.]

Thanks to a volunteer we were able to find the picc procedure room and the door happened to be open. I popped my head in and asked the nurse if I could speak to her for a second. I explained my symptoms and the fact that I was sure it was nothing. The nurse felt I should get a chest X-ray just to be sure. This was ordered immediately. I had the X-ray 20 minutes later. Well, it turns out the picc line had migrated into the right atrium of my heart.

Apparently this is unusual. She said there’s some research that says it’s related to the veins being constructed when it’s inserted. They had performed an X-ray after it was inserted initially to confirm it was in the right place but somehow it had gone much deeper. She said it was nothing I did. (Although if ski again I’m not even going to carry a right pole). They pulled out over an inch of the line. The photo below shows where the line was in my arm (the arrow) and how much is out now.

I don’t really understand how the line was in the right place initially and now there’s so much of the line outside of my body!

I don’t feel confident that the home care nurse dismissed my discomfort comments so quickly and didn’t suggest I get it investigated. (The hospital is sending them a note).

The thought that the chemo drugs I get today would have gone right into my heart scares me – maybe it would’ve had no impact. I don’t understand it enough to know. Nonetheless it gives me the heebie-jeebies!!!

Removing the line has reduced the discomfort, however, it hasn’t disappeared. It is likely some inflammation but I am still a bit concerned. I will discuss it with my chemo nurse today.

I hadn’t really looked into the risk of the picc line until now. I did so yesterday and there are a number of things that can go wrong. Statistics very low – but I am glad I am more aware now.

My massage therapist tells me I have great body awareness. I tend to agree. However, I never want to be a wimp so my natural tendency is to dismiss things. I am thankful Dr Edwards reminds me not to.

Off to chemo shortly!!

I have a feeling today is going to be a great day! Not a cloud in the sky.

Watching this video is a great way to kick off the day (don’t skip it)…

I feel rested this morning thanks to a good nights sleep – something that has been rare to date.

As per usual, I went downhill on Thursday once the steroids wore off – I woke up with a headache, my energy tanked and I felt nauseous. Yesterday was similar although the nausea disappeared.

I have been doing my best to get some exercise – going for a 50 minute walk on Wednesday and a 35 minute walk on Thursday.  Stairs still take my breath away, requiring a rest at the top.  Yesterday I managed to get my taxes finished and after a two hour nap I even managed to do 30 minutes on the trainer. It was too wet and grey to go for a walk.

My throat and cough have been better the last couple of days – still there but not as troublesome.  This is huge for sleep quality.  Fingers crossed that I am finally getting over this.  Something new this week – I have been getting nose bleeds.  I assume the tissue in the nose is also impacted by chemo.

My hands are still doing well.  Although I have discomfort in my finger tips and my nails are sore.  The colour underneath my nails is very white. (maybe because of low RBC).  It hurts to put pressure on my finger tips. I am going to need to rebuild hand strength when this is over!  They are very weak.

Overall, I am doing well.  I am feeling more confident in how things are going.  I feel like my body is fighting this and that is helping my frame of mind immensely!!

The mind-body relationship is a bit of a chicken and egg paradox.  I do believe our thoughts, beliefs, and emotions have a huge impact on our health and ability to heal.  There is some science that backs this up.  However, I know that for me, how my body feels also impacts my thoughts and emotions.  I also know I have control over how my body feels which is why I stay active and embrace the great outdoors – it makes my body feel better which makes my mind feel better – or is it the other way around?  In the end, I guess it boils down to not feeling like a victim of your mind, body or circumstances. What’s crucial is a feeling of empowerment.  A sense that we have, within ourselves, the ability to impact all of these – whichever comes first.

Take on the day people!!!

 

It’s a great day so far. I feel like I have some control!!

Chemo went well yesterday. Kyle came with me. Funny thing, we didn’t get the good Pod again. Both times Kyle has come with me we landed in Pod 5 – no big windows and view. (Maybe that is why we both forget to get a picture together). This time, I not only wore the Cryo gloves and socks, but also kept my hands raised in the hopes that would keep the chemo out of my hands. The gloves make me cold so I layered up with my scarf and Kyle’s down jacket – cozy.

Once again I continued with ice on my hands when I got home (even though Dr. Sehdev thinks I only need the ice during infusion. I feel this can’t hurt. There is chemo in my system. I don’t want to risk the issue I had a couple of weeks ago).

My face became quite itchy almost immediately so also used the ice packs on my face a bit. My digestive system went to the other extreme. I will be off prunes and bran for a few days.

I didn’t get to sleep til late. The steroids really give me energy!  It’s too bad my body doesn’t let me take advantage of it.  Instead, I laid on the couch all night watching some great shows on Amazon prime. It’s best I don’t move around too much after the infusion, I want to keep the chemo out of my limbs. I highly recommend Tig Notaro’s show One Mississippi. I’ve been watching a lot of Tig lately given how open she is about her battle with cancer.  I then started Goliath with Billy Bob Thorton and William Hurt – excellent so far!

I took a T3 and a Benadryl in the hopes it would keep the inflammation at bay and would put me to sleep. I finally feel asleep at 12:40am.

The ice is working – my hands are GREAT today. No inflammation or swelling yet. Below is a picture of my hands 2 days ago and this morning. They look the best they have looked in a while. Although they still look like the hands of a 90-year-old and the colour is weird. The nurses find it strange.

My face on the other hand is itchy and inflamed. I look sunburned. I’m not too worried about it since this has happened the last 2 rounds on Taxol. Although it is a little more extreme this time .

I am on the steroid buzz today so will take advantage of it while I can.

Ok now to catch up on my journal since my last post….

I took care of some of my keys tasks – expenses, investments, income related and more. It felt great to be clear enough to do these tasks that had fallen way behind. Now I can focus on my taxes – my goal for this round.

Friday March 15th

I had an interesting appointment with a doctor who specializes in hormone replacement therapy. This is something I’ve been interested in for a while.

My own doctor is not a fan, since he, like so many other doctors, has been influenced by inaccurate and outdated information (studies that are questionable and tested on a small subset of older women that don’t represent a reflective sample). As a result he was dragging his feet to provide me a referral (I had asked a couple of times and finally demanded it and was referred about eight months ago). When I got the call a few weeks ago I had said there was no point right now given my cancer. However, the receptionist encouraged me to come in, saying that this doctor works with a lot of breast cancer patients. I am so glad I went. Dr. Stauffer was wonderful – compassionate and informative. I explained that the reason I am interested in HRT at some point is mostly about maintaining body and bone strength once I go into menopause (which chemo will now accelerate). One upside of triple negative breast cancer is that it is not a hormone receptive cancer so HRT is feasible for me. She even mentioned it is something I could consider now. However, I know my Oncologist will not go for it at this point given he won’t even let me take cough syrup or prescribe something to deal with my throat and thrush (which is frustrating my chemo nurse who says the rinse for thrush would heal it quickly and relieve many of the issues that are affecting my sleep). The doctor spent an hour with me.  She booked a follow up with me in 3 months since she wants to know how I am doing. I came away from that appointment feeling empowered. It is a great feeling to be thinking about the things I will do for my body post cancer!!

Saturday March 16th

Given the Canal is closed for the season I made some optimistic plans to skate ski on the weekend. My plan was to try skiing at Mooney’s Bay on Saturday and assuming I did well, I would go to the Gats on Sunday. Jill had found a good route for me starting at P19 (50 to the 55 trial) that looked to be manageable.

It didn’t go well Satureday. The conditions were marginal.  However, that was not the issue – my body was!  I could barely ski.  I tried hard but my body would not cooperate.  I became very dizzy and got that feeling you get when you’re about to black out.  I came close to lying down on the track.  I only lasted about 20 minutes and had to go inside and sit on the bench to recover.  It was very discouraging!  It’s so surprising how quickly things can go downhill.  Needless to say, skiing in the Gats was out. In fact doing much of anything is out – other than easy walking.

St. Patrick’s Day

I woke up St Patrick’s day feeling like I needed to do something that made me feel normal. Feeling so weak on Saturday had brought we down.

Since the only thing I thought I could handle was walking I decided I would make the most of it and walk somewhere interesting. What better place to go for a walk than downtown Ottawa on St. Patrick’s day. I got a friend on board, put my wig on, dressed in green, adorned myself and my friend in my collection of Irish Mardi Gras beads and headed downtown, parking at City Hall. We walked from City Hall to the Byward Market and explored all the streets, enjoying the sun and people watching, deciding on which Irish Pub we would hit. Given how low my white blood cell count is I know heading into a busy pub is risky. However, I decided my mental and emotional health was worth the risk. Trust me it was! We landed at the Heart and Crown. It was packed. They had bands playing all day.

What great energy and fun! This is the first time I have been out (other than friends’ homes since December). It felt incredible to sing and dance and drink a Guinness! Yes, I had a drink. My first real drink since January 6th. It tasted incredible! I know my Irish colleague, David, would be proud and I am sure would espouse all the health benefits. In fact, David sent me a gift of two cans of Guinness that we are going to drink together once I’m through all this.

It was a great day. Reinvigorated me!

Monday March 18th

It was a hospital day. Started with my Picc flush and change, blood work and the an appointment with my Oncologist, Dr. Sehdev.

My WBC continues to drop.  If it continues to drop at the same rate it has been, I worry my next round might be delayed. On the upside my RBC and Hemoglobin improved slightly – as Sehdev predicted might happen. Although I don’t feel the improvement yet.

The lung X-ray was fine.  I knew it would be, this doesn’t feel like an unusual cough but it has been in the back of my mind and I have had some moments of worry.  He wasn’t too concerned about the blood inflammation test.  He said these tests are questionable in terms of the results and need to be factored in with other things.  He’s not an expert in this area so I need to wait to I see the rheumatologist next week to understand more.  He felt the tumour and seems to feel there has been a response (I would agree I feel a change).  He wants me to have another breast MRI so he will be contacting my surgeon about this.  In terms of all the other things I just need to keep sucking it up and doing my best to manage them.

Tuesday March 19th – Chemo Day

Given I can’t do much for a couple days after chemo I decided to get on my trainer in the morning – finally.  It felt good.  I just went for 25 minutes but I went a bit faster than the last time I was on it.  That was encouraging!!

I keep meaning to post a picture of my trainer and the wonderful platform my friend John made for my sawhorse.  I have used a saw horse for years and just stick my iPad on top (it would stick with the magnetic case). John and Sandy came for a visit and I mentioned I planned to get piece of wood to put on top to give myself a bigger surface.  Next thing I knew John was taking the sawhorse with him and said he would bring it back in a few days (John is a master carpenter by trade). He went above and beyond. The top is removable, adjustable, made from marine grade wood so it can withstand sweat dripping on it. He even made feet to protect my wood floors. I love it!!

What a beautiful white snowy day! Some of you must be thrilled – ski day!! Oh Yeah!!!!! Others, are surely sick of this. Not me, I am hoping to find a way to do get a ski in this week (if my body will cooperate).

Round 6 (Round 2 of Taxol) is going pretty well. I wasn’t able to post since I spent day 0 and part of day 1 and most of this morning with my hands on ice packs in the hopes of mitigating the reaction I had last time. Seems to have worked.

This chemo round was scheduled at 8 AM on Tuesday (rather than my typical 12:30 pm) . Turns out it’s a pretty good time to get in there. I had a nice pod with a window bed and bright sunny view.

Because of the change in time I didn’t have my regular chemo nurse. However, this nurse was also great.

My blood has deteriorated in the last week. My anemia is worse and my white blood cell count tanked (dropped by over 50%). I’ve had a lot of symptoms of the anemia that are making it difficult to do things. The nurse suggested she schedule a blood transfusion. I was pretty happy about that since it would mean I could become more active again. Unfortunately, my medical oncologist didn’t approve. He said there’s some research suggesting that erythropoietin (EPO) can impact immune response and tumour growth so there are reasons to avoid. I found some research here that supports what he says. He believes the anemia is likely caused from the previous anthracycline regime and may improve. Therefore, he wants to wait and see. It’s clear, given I haven’t had the response he hoped for, he’s being very cautious about doing anything that could interfere with the chemo having an optimum impact. Unfortunately, the anemia is impacting my ability to be active which is very frustrating.

My chemo buddy was my girlfriend Sue.

I kept her busy since I decided to use the cryo gloves and slippers and they needed to be cycled on and off every few minutes given the other issues with my hands and feet. They were excruciatingly cold at first. I could only tolerate them for a minute or two. However, by the end I was able to keep them on constantly.

I spent most of Tuesday afternoon and all through Tuesday night (I didn’t sleep well thanks to the steroids, cough and sore throat) wearing cotton gloves with heavy-duty moisturizer, holding ice packs in my palms. I also decided to get ahead of the inflammation by taking a T3. This strategy, combined with the cryo gloves, seems to have worked. My hands did not have that extreme reaction they had last time. They were a bit tight but they didn’t become inflamed, painful and so stiff that I couldn’t use them. Yay!! I now have a strategy to manage this side effect for the next rounds.

I now have the hands of a 90-year-old. I moisturize obsessively and wear cotton gloves every moment but it doesn’t seem to help. They just look terrible and my finger tips are somewhat numb. This chemo is also supposed to be really hard on your nails. Finger and toenails often turn grey/black So far, so good on that one. The cyro gloves should help with that. In general my skin is being hit hard. It is like watching aging in fast forward mode! Oh well, not much I can do about it at this point. When this is over I will get on it!

I do seem to be having a slight allergic reaction to the Taxol. Similar to the last round my face became very itchy on Tuesday. By Wednesday morning my cheeks were red and my face was still itchy. However it seemed to improve throughout the day and is fine today. This may mean that I can’t reduce some of the pre-chemo drugs that are used to manage allergic reaction.

I’m still struggling with a cough and sore throat. It’s so frustrating that I can’t shake this. The fact that my immune system is becoming more compromised means it will continue to be difficult. My digestive system is still off. It is all over the place. I’m on the prunes today. (I’ve discovered that I love prunes. The ones from Costco are delicious – very moist. Highly recommended! OMG, I can’t believe I just typed that. What is becoming of me! :)) Anyway, managing the digestive system is a balancing act, since tomorrow I could be the on the BRAT diet. (The nurse and doctors are quite obsessed about this, so I actually now keep a log – OMG.. once again – Did I just type this!? Nothing but up from here).

Overall I’m doing so much better than last time. In fact I actually had lunch at Wilfrid’s in the Fairmont yesterday. A colleague from Sparkrock flew in to meet with me. We had a long lunch and discussed some of the things I had been working on as well as the upcoming events that I was to be involved with in the next few months. I’m glad the steroids were still controlling my nausea. Lunch was delicious – lobster! However, once I got home I crashed, The steroids wore off. I needed to take some of my nausea pills and was in bed very early. (Kyle needed to give me a hand getting there). Thankfully I slept pretty well so I feel quite rested today.

I don’t know where the last three months have gone! I’m starting to feel the pressure of time slipping by. There are so many things I want to do with this blog beyond just posting the boring day to day updates. I have ideas jotted down but haven’t had the time/energy to expand on them.

I also want to write more about the Ottawa Hospital and the great work that’s done there. I think many people in Ottawa are not aware of the work being done right here in our city. It’s been an important cause for me for many years. I have really enjoyed my involvement in the Presidents Breakfast and the Ride. I’m constantly amazed at the incredible work being done at this hospital. The knowledge I have provides me with such confidence and comfort – I am getting top-notch care in a world class cancer centre.

However, I’m still behind on so many administrative things at home that working on the blog feels like a luxury. Some days I am just too tired to do anything but lay in bed and listen to a book or watch Netflix. The energy I do have needs to be devoted to getting on top of the things that are falling behind and holding the day to day together. I have set some goals for task completion but I am having trouble meeting them. The day to day is such a roller coaster.

So for the meantime my blog will continue to be focussed on keeping people up-to-date on how I am doing. My hope is to blitz some of the to-dos over the next week and free up some time to nurture my soul and creative side. I’m feeling the need for more reflection and contemplation. However, I don’t think I can do that freely and wholeheartedly with outstanding tasks hanging over my head. Once I do, there could be a flurry of posts!!

I’m happy to say that I’m continuing to do well this round.

My hands have improved!! Yay! They are still a bit sore and stiff in the morning but they improve quickly once I am up (could be swelling from steroids). There’s really no pain just numbness and weakness (I drop things more often).  The inflammation on my palms has gone down, although the overall colour of my hands is still weird. I noticed they’re starting to peel despite being continuously slathered in cream and wearing cotton gloves most of the time. It is like I am getting burned from the inside out. My feet have been good – no numbness at all. Yay again!!

I’m definitely noticing the pain of low red blood cells and hemoglobin. Going up stairs and skating is getting harder and harder. I get out of breath and feel woozy easily. Occasionally, I experience mild chest pains when I’m skating. I need to rest at the top of stairs and have to rest for several hours after skating. (SO WORTH IT!!!!). I am still battling Thrush.

I keep forgetting to mention my brain. Although I do have moments of confusion and forgetfulness, I really don’t feel like I’m being affected too drastically by chemo brain. Maybe it’s the fresh air and exercise. (There is a study taking place at the hospital related to exercise and chemo brain. It will be interesting to see the results. Think I may have told you folks this before. Am I repeating myself a lot? ). That said, I should probably ask the people around me?! They may have another take on this. Maybe I did ask them – umm.. I will ask again and let you know.

All in all, I think I’m doing GREAT in comparison to how I have felt since chemo started in January. Thank goodness because it was really wearing on me. I was starting to appreciate why people opt out of treatment (although I know I would have toughed it out no matter what).

I am trying to be measured about my enthusiasm for Taxol vs the AC Chemo. Treatments tend to have a cumulative impact so I’m sure it’s going to get tougher again. However, just feeling well for a couple of days has been a huge boost to my mental and emotional well-being.

Speaking of mental and emotional well-being – I’ve managed to skate the full 15.6k for the last three days in a row – accompanied by a different friend each time. I am so blessed to be surrounded by friends who love the outdoors and are so supportive. The ice conditions in the morning are incredible. Given how warm it’s getting in the afternoons, I keep thinking it’s going to be the last day. Today may have been. The ice was getting soft when we finished and they’re calling for 10 cm of snow tonight. I say it’s 50-50 for tomorrow morning – I’m still holding out.

My post-skate indulgence is a warm epsom salt soak. (I keep both my hands and feet out of the warm water since it’s not good for hand and foot syndrome). It’s the perfect place to remove the chill, meditate and drink some tea and enjoy fresh flowers. So good for the soul!!!

An added bonus was the delivery of these wonderful treats from my friends who reside on the Isle of Man. Thank your Karen & Brian – Sconewitch is my favourite!

DERAILED

With all the positive you would think I would be in total warrior mode today. No chance I could feel anything but positive… well, I want to give you some insight into how quickly I can derail.

I interrupted my Zen bath by checking my online medical charts from my phone again. (I’ve been checking them several times a day since Tuesday). Normally my Oncologist posts the clinical notes within 24 hours of my appointment. He told me he would be checking my lung x-ray before he left Monday so I expected to see that in the notes. He still hasn’t posted them. Highly unusual.

In addition, the results have come back from the additional bloodwork he ordered. There is one result that isn’t good. It is a test that measures the inflammation in my blood. My result is 2 1/2 times above normal. I googled (i know – very bad) and found some very scary information related to cancer metastasis and this test. Of course there are other causes but I can’t see them – they are just noise. All I can see is “cancer metastasis”. My heart rates increases and I am flooded with fear – the reaction is overwhelming. I then have to talk myself down. I need to keep this in perspective. I had a scare previously with my LDH test – which was also above normal. My oncologist didn’t seem too concerned. “Chemo messes up a lot of things.” This is likely the same scenario. I won’t know until I see him on March 18. So I better get a handle on this. Therefore, I spent a good portion of my afternoon talking myself down – convincing myself that there’s so many reasons for this result. “It is nothing”. I am feeling my way through this.

I have succeeded in calming myself (no CBD involved). No point worrying ahead of myself – unless I am told by the expert that I should . In this case, information isn’t power.

Time to work on my meditation skills and self talk.

This could be a very weird coincidence but just after I posted my “Chemo Round 5 – Day 1-3” post – where I discussed the fact that I took Opioids – I went to the weather network app to check the temperature. When I did this yellow advertising screen popped up. It said “Understanding the risk of Prescription Drugs” It just flashed for a second. I closed and reopened the app and it’s gone. Scary!!! Just sayin!

My chemo nurse was right – PACLItaxel (aka taxol) is easier than the AC regime in many respects. I don’t feel like I’m experiencing the worst hangover of my life – my head is clear, I can tolerate light, I haven’t stepped into the abyss. I can function! Yay!!!!!

I was quite well Tuesday evening. I was able to sit in the kitchen while my girlfriend, Marian, cooked up a storm.

Unfortunately, I didn’t sleep well on Tuesday night since my cough was plaguing me – keeping me awake much of the night (I resorted to drinking some of the homeopathic cough syrup despite my oncologist orders.  I spoke to the hospital pharmacist after seeing my oncologist and she told me there is no cough suppressant in the syrup – which the oncologist said can interfere with chemo – so I figured it won’t hurt once in a while. I needed some sleep. )

Despite the lack of sleep, I felt pretty good when I woke up Wednesday morning. I was up and about and well enough to fix breakfast. The only challenge was my hands; which were becoming painful. The skin was inflamed and sore.

The steroids and anti-nausea medication seemed to be working very well. I was not nauseous. My thrush was improving as well.

I felt well enough to go out for dinner which was in honour of one of my friends who is moving to the US. However, my hands continued to worsen throughout Wednesday.  By Wednesday night they were quite debilitating and I was not able to dress myself. Poor Kyle had to dress me (scary!!! Lol).

My fingers were so tight and constricted that I couldn’t bend them. The skin was inflamed, it hurt to touch anything and they were weak. My oncologist had told me I’m experiencing hand and foot syndrome as well as the neuropathy. I found this information on hand and foot syndrome and it’s definitely what I’m experiencing. Although my feet seem ok. There is some inflammation, particularly in my left foot, but nothing too bothersome.

When I got back from dinner I started using ice packs on the palms of my hands to try to bring down the inflammation and burning feeling. I also noticed that my face had become a bit inflamed. The risk with this chemo is an anaphylactic reaction so I was told to be on the lookout for any rashes or similar allergic reaction. Therefore, as instructed by the chemo nurse, I took more Benadryl. That worked out well since it knocked me out and I got a great night sleep Wednesday night.

My hands were really painful when I woke up Thursday morning. My fingers felt like fat sausages. I couldn’t bend them. I kept my hands in cotton gloves, coated with cream holding ice packs on and off for most of the morning. The ice packs felt great and seemed to help. I also took some Tylenol for the pain which also helped. By the afternoon my hands were feeling better.

It was a gorgeous afternoon yesterday so a friend picked me up for a skate on the Canal. I was quite concerned as to how I would do since I have to rest at the top of a flight of stairs. I did well! We skated the whole Canal. I was slow and needed help when we were skating into the wind but overall pretty pleased with myself.

I was zonked when I got home. I headed for the couch and fell asleep soon after. I peeled myself off the couch, had something to eat and headed to bed pretty early. I don’t know what time it was but I think it might’ve been 7:30pm. Drugs can be a wonderful thing – I slept until 6am – only up twice during the night and fell back asleep immediately.

YES… I finally broke into the opioids last night. I’ve had them since I started chemo but was scared to take them (I have a lot – 90 pills. Maybe I shouldn’t be advertising this!! However, there is value in public accountability. Perhaps they can be my back up plan in case things get tight financially). I can count on one hand how often I take things like Tylenol or Aleve so I’m always wary of taking drugs. I’ve been saving them for when I really felt I needed them. Well, I need them now. It’s hard to function with such painful hands. I will say I was thankful for them last night. I needed to sleep and they’ve definitely helped the pain in my hands.

My hands feel better this morning, They look less inflamed. My fingers are still tight and hard to bend but not as painful. This is why I’m able to work on this post. It was too painful to type yesterday. I won’t take any drugs today and see how that goes.

I’m planning to get out for another skate today.  I need exercise. I’ve been so fatigued the last two weeks that I have not been able to do much at all. I’m definitely noticing the impact of the steroids. I’m feeling puffy and fat. (Kyle had a really hard time doing up my jeans the other night, ugh). I’m sure the exercise will help clear some of the fluid buildup, Most importantly, it will clear my mind and remind me of my strength.

It looks to be a gorgeous day and given the forecast I think there’s only a couple of days left on the Canal. Carpe Diem!!!

I am pleased to say that I managed to get out for a pre-chemo 12k skate this morning. It was a challenge since I had to skate into the wind on my way back – and I was pooped. I was proud I pushed myself – it was so good for my mind and soul. The Canal is still in great shape.

I arrived at the Cancer Centre at my regular time, only to discover that my chemo session had not been scheduled.  I was impressed with how the staff dealt with this.  The situation was escalated to management.  Several people engaged to problem solve.  They found the paperwork, my chemo nurse said she could take me and the pharmacy agreed to mix my drugs and chemo cocktail STAT.  The whole thing resulted in close to an hour delay – but I didn’t care.  I was just pleased they made it happen and I can stay on my Tuesday schedule..

The manager came to see me – they were not sure what happened, but said they will find out.  I suspect it’s because the chemo plan was changed. Anyway – all worked out in the end.  They could not have handled it any better.

I have different pre-drugs this time. I have one called Granisetron that I take 1 hour before for nausea and vomiting.  When I arrive they start with one bag of saline drip (as usual) and give me 50mg of Benadryl, another drug called Ranitidine (Zantac ) and a big bag of steroids. More steroids than last time!  Once these drugs are administered I need to wait 30 minutes before they start the PACLitaxal chemo drip.

I really felt the pre-chemo drugs quickly.  Felt a bit stoned and sleepy. However, by the time I was done the steroids had kicked in and my energy was back up.

My chemo buddy was Marian. Another dear friend!  She has been away for 2 months – so glad she is back.  She had a picnic packed – no chance of going hungry with this “chef” friend by your side. (Take note of my Warrior Tattoo:-))

I’m feeling pretty good tonight. The nurse told me the steroids do a really good job – and I would be full of energy for next 24hrs. However, like the last round when the steroids wear off, I will go downhill.  She said similar to the last drugs, this will still be a roller coaster, but hopefully easier.

I’m not very happy that I have to take all of these drugs, particularly the steroids for the next 12 weeks.  I went from only having to have the steroid four times to now having it 12 times.  That has to be hard on the body. I need to be careful my weight doesn’t balloon up!  I spoke to the nurse about this, and she spoke to the pharmacist.  Apparently I may be able to reduce the dose of the Benadryl and I can probably get off the Zantac after a couple weeks but they don’t believe I’ll be able to reduce the steroids.

Marian has been cooking up a storm since we got home – I get to sit and watch 😉 and eat a bit.  I think I will be set for nutritious food for this round.

I will try to keep you up to date over the next few days.

Night all.

I have some good news, and not so good news – yet again.

The good news…

My genetic testing results are back.  I don’t have any genetic mutations for the 17 genes they test.  This doesn’t mean there isn’t a genetic component to my cancer since there are 24K genes.  It does mean of the 17 key ones that have been identified – I am clear.  This reduces my risk of getting some associated cancers – such as ovarian cancer.  Of course, most importantly it is great news for my kids.

The not so good news….

The last week has been pretty rough.  I have been very fatigued.  I was finally able to get out for skates on Saturday and Sunday but they were quite challenging.  I haven’t had the energy to be on my trainer.  Just doing the day to day things at home are tiring.

I’ve developed thrush in my mouth and the nurse thinks it is in my throat and maybe esophagus. Thrush is related to a compromised immune system. It is quite uncomfortable. It also affects the taste buds so I can’t taste food very well and any small amount of spice tastes like fire.

In addition my dry cough persists and has gotten worse – particularly at night.  Meaning my sleep has been disrupted.

My mood has been off.  Apparently, the chemo I’m on as well as the steroids really impact mood.  And it is all cumulative.  The steroids can make you aggressive.  I certainly have been feeling edgy and emotional.  You know you’re off when you cry, at not one, but two episodes of Schitts Creek!

The issue with my hands continues – but off and on.

A change in my treatment plan…

I saw my oncologist today.  My son Kyle went with me.  I ended up spending most of the day at the hospital.

The oncologist was disappointed in the results from my ultrasound.  He had expected a better response by this point.

He’s quite concerned about my hands. He agrees that they don’t look normal. The chemo I have been on can impact the hands and feet – generally red, dry skin. Not the yellow/white blotchy appearance I have.  He ordered a bunch of additional bloodwork.

He’s quite happy I’m seeing a rheumatologist in a couple of weeks.  He is having the blood work results sent to her.  He said in his 30 years he’s never seen anyone have a response like this to the current regime.  He doesn’t want me using the cooling mitts or socks because he is concerned there could be something else going on and the cold could be damaging. The good news is that he shared that statistically long-term neuropathy as a result of chemo is quite low.  He said it could be a year before it goes away but he expects it will go away.

He’s concerned about the Taxol chemo and my hands.  He basically said no matter what the side effect I need to continue on chemo.  Shared a story about a gentleman with testicular cancer (Lance Armstrong’s cancer) who had a really bad reaction to chemo (high pitch ringing in his ears that could last for life) – but he had to continue to save his life.  If I didn’t have triple negative cancer then he might recommend surgery right away.  However, with triple negative and the risk of metastasis he feels it’s important I continue on with chemo despite the potential long term side effects.

He’s also concerned about my persistent cough. He told me that this cancer tends to metastasize to the lungs (and the brain – as you all know).  So he sent me for a lung x-ray today.  I was a bit surprised since I thought the chest MRI covered all that.  Apparently not.  It just looked at the breasts.  I am sure it will be fine!

He also told me I can no longer take any cough syrup.  Even though the one I have is homeopathic.  He doesn’t want my taking anything that could interfere with chemo (i.e. hasn’t been tested).  He also would not give me a prescription to deal with the thrush (the nurse had told me I could get one). He only wants chemo in my system.  He shared that he lost three patients who used homeopathic therapy while on chemo.  I guess he was trying to scare me – it worked!!  I had vetted the cough syrup with the pharmacist at the hospital.  I guess I just must suffer with the sore mouth, throat and cough and hope my immune system will fight them.

He told me to make sure I don’t eat grapefruit, pomegranates, or blood oranges. (I haven’t been eating any of those).

As a result of all of the above he has changed my chemo regime.  Instead of 4 more rounds every two weeks, I will now have 12 more rounds and be going weekly. UGH!!

This is the first time he really talked to me seriously about post-surgical chemo. I always knew it was a possibility but hoped that I would have a really good response before surgery and wouldn’t need it. The fact that he discussed it today makes me think he’s trying to get me used to the idea.

So – it was a long day at the hospital.  I was going to try and get out for a skate but feel under the weather and exhausted.

Despite the challenges this week I have had a lot to be grateful for.  I continue to be surrounded by caring family and friends who surprise me with acts of kindness.  Better yet – I had the opportunity to help some friends out last week – most grateful for that.  It always feels good to be doing something for someone else.

Last week I received a beautiful necklace from an anonymous giver.

It is rose gold and says warrior on it. I have asked around but no one’s come forward.  If you sent me this gift and forgot the card please let me know in the comments

I also received flowers, cards, an audio book subscription, a couple of dinners out, lots of moral support and more.  I received some wonderful “bath tea”.  It was so soothing!!  I had a 75 minute bath in it – blissful.  I’m especially grateful that I was pretty healthy and fit when I started chemo. Sometimes I just need to be reminded of that.  When I was describing my extreme fatigue and how I couldn’t do anything for 11 days and then when I could – it was so difficult, the nurse said most people can’t do a thing the whole time they are on AC chemo. Oh yeah – I am doing well!

Anyway folks, tomorrow is a new day and the start of my new regime.  I am very glad that the AC is behind me and really hoping Taxol and I get along better – particularly given we’re going to be spending three months together.