After several days of some pretty rough weather the sky is clear, the sun is shining and the cold has returned.  There are ice ruts on the roads and sidewalks – forcing us all to tread mindfully.  Frozen snow banks – some stunningly white, others dirty from the day to day grind.  There is promise! Promise of more skates on the canal, skiers gliding in the Park and ultimately of spring!  We are all wise enough to know, there will be some dark and blistery days before we get there, but spring will come and with it the renewed energy that promises longer, brighter days.

Life, like the weather, is a roller coaster!  I have always loved roller coasters.

The last week has been a roller coaster once again, but mostly in the valleys from an energy standpoint. I was pretty much in bed until Saturday morning. I started coming around on Saturday thanks in part to being picked up and taken to brunch with my girlfriend Kelly and her wonderful son Tanner. My girlfriend Sue joined us. It was like a return to the living after being in bed for so many days with little human interaction !! I followed brunch with a nap, an intention to skate that ended up being a walk, followed by another nap. The day ended with a wonderful pot luck dinner with 6 of my friends hosted by Madeleine. A couple of friends figured I needed to get out after days in bed. It was very impromptu and came together nicely. They were right, I start to feel energized after being around these wonderful ladies. Sunday was a miserable day weather wise. Navigating the icy roads and ice walkways made getting to my Picc appointment a little more challenging than usual. Just about wiped out. The good news is that my brain is getting accustomed to the chemo. Typically, I have a headache on the Sunday but this time my head and eyes felt clear. The convergence of a clear head, VERY low energy, horrible weather and the Oscars could only mean one thing – the universe had conspired to make me a couch potato for a day – kettle chips & popcorn included. I watch Bohemian Rhapsody, A Star is Born, the pre-Oscar show and then some of the Oscars. It was total guilt free pleasure!! Pure bliss! I don’t think I’ve done that since I was in my early 20s in University!! (BTW – both movies were fantastic. I highly recommend them both.)

I woke up with some fairly severe digestive issues on Monday (I’m sure it had nothing to do with the kettle chips or popcorn – just sayin.  I bought the healthy cancer friendly versions).  I was also very fatigued again.  I ended up calling the cancer patient support line since I was experiencing some of the issues you’re supposed to call for.  Boy do I hate calling patient support!!  I just don’t wanna be THAT person.  I feel like the lonely old lady who has become a hypochondriac and focusses on every little thing going wrong; harassing support line workers since no one else wants to listen to her anymore (I had to remind myself this is only the second time I’ve called them in 2 months).  They told me how best to deal with my digestive issues.  As for some of the other side effects – they just said cancer and chemotherapy cause a lot of complicated interactions in the body and I need to wait to talk to my oncologist on Monday.  I regretted calling because I don’t like burdening the system.

I will say, I don’t like going for 4 weeks without seeing my oncologist.  So much happens day to day and now the side effects keep building so it’s way too long to get questions answered.  I have so many questions related to my hands, my blood work, the last ultrasound. I can’t wait for next Monday.

Back to yesterday – I spent quite a bit of time in bed.  However, all was not lost.  I did join in on a work client strategy call and got some work started on my taxes.  (I have a lot of home administration work to catch up on). Thankfully I rebounded as the day went on so I was able to make it to book club.

My energy is low today. I can tell my blood stats are off.  I feel dizzy when I climb stairs and need to rest and catch my breath at the top.  My heart feels like it’s working very hard to do simple things.  I have a very dry cough that I just can’t shake so that’s been disturbing my sleep the last few nights.  It was particularly bad last night and I’d run out of the chemo friendly cough syrup. I did managed to get out of the house for a meeting at my bank, and some errands (and cough syrup).

Every day brings some new little twist on a side effect.  Many I’ve discussed before and many that are new.  I have some mouth sores that popped up this afternoon.  Literally one minute I didn’t have them and the next minute I did.  It’s so bizarre.

I’m sorry for boring you all with my mundane griping.  The reality is much of my day is spent dealing with side effects.  It is boring!  I am becoming a hypochondriac – because I’m so focussed on my body and every little thing happening to it.

My mood is definitely lower this week.  I’m sure that’s in part because I haven’t been getting the fresh air and exercise that I crave.  I am hoping I’m going to turn that around in the next few days – and my next post will be more upbeat.

I’m not quite as sick as I was after round 3 – thank goodness.  Gail spent the night and took great care of me and we had chance to catch up before I crashed last night.  As I’ve said there are some positive side effects!!! Spending quality time with friends is certainly one of them.  I spent the day in bed sleeping and listening to a book.  I’m still buzzed on the steroids so I have the energy to do some posts.  Thursday afternoon is usually when I crash so I may be off line for a few days.

As I mentioned in a previous post, I’ve been struggling with neuropathy in my hands.  My oncologist is away this week so I wasn’t able to discuss it with him.  However I was able to discuss it with my chemo nurse.  As I mentioned with the chemo regime I’m on right now, it’s not supposed to cause neuropathy.  She agrees that she doesn’t usually see it with A/C and that it is a bit concerning that I’m already experiencing it, particularly given my next chemo regime is renowned for causing this very unfortunate side effect.  She has suggested using chill mitts and socks. The premise is the chill mitts/socks constrict blood vessels during the infusion and therefore limit the chemical reaching the hands and feet.

I declined them yesterday since I think I need to talk to my oncologist about it first given the concern that I might have Raynauds.  I have to balance the circulation issues I’m having in my fingers and toes with neuropathy.

The nurse told me there hasn’t been a lot of research on this yet but some of the limited studies have shown promise.  I found a couple of interesting articles.

Cooling Mitts, Socks May Ease a Major Chemo Side Effect

Frozen Gloves and Socks’ Help Reduce Chemotherapy-Induced Peripheral Neuropathy in Patients With Breast Cancer

I’m definitely interested in trying them since I’m really scared of long-term neuropathy.

There are even chemo cooling caps. People use these to freeze their scalp as a way of avoiding hair loss during chemotherapy.  It is supposed to feel like a brain freeze times 1000. No thanks!!

Apparently you still lose 50% of your hair and your hair quality is still dramatically affected – thin, fragile and dull.

The hair thing didn’t really bother me.  The hair will grow back.  I’m actually embracing the benefits of baldness.  It is so fast and easy to get ready to go out.  Showers are half the time and all I have to do is plunk on a wig or hat and I’m good to go.

Also the chemo cooling caps were never an option.  However, the neuropathy bothers me since it can be lifelong!!  So you’re likely to see me wearing cooling mitts and gloves during my next round of chemo.

Hey all,

As mentioned yesterday, I didn’t get a chance to finish my blog entry for my activities over the few days leading up to round 4. Since this blog also serves as my journal I am posting now.

My energy began to return Friday Feb 15th. I ventured out for a sunset skate -ski at Mooney’s Bay’s.  I had a loose goal of attempting a Gats ski on Monday so I wanted to test out how I was doing and if I was capable of polling more with my right arm since this would make Gats hills a bit easier.  The ski felt good however polling didn’t.  My arm became uncomfortable at the Picc line and into the chest so I had to stop polling on the right.  I noticed that even the slightest hill is quite fatiguing.  Therefore, climbing Fortune Hill with a goal of skiing the number one was no longer a realistic goal.  (Lol – It likely wasn’t realistic to begin with, but a girl can dream).  But that is ok – who wouldn’t be reinvigorated and inspired by this…

It was very cool to see a Paraskier practicing on the Mooney’s Bay hill.

I managed to get out for skates on Saturday, Sunday, Monday and early Tuesday before chemo.  My energy Saturday and Sunday was mediocre but it was quite good on Monday and Tuesday.  Tuesday was the highlight!  There was hardly anyone on the pristine ice.

I was lucky to be invited out for dinner several times over the weekend. I was even served one of my favourite food items – Yorkshire pudding!

I completed round 4 today.  This should be the last round on the A/C chemo regime.  Next round I’m supposed to start Taxol – which will introduce a whole new set of side effects.  The great news – no more of the “red devil”!!! Yippee – this is the chemo with the worst side effects.

My girlfriend Gail was with me today.  She is in from Toronto and staying with me tonight.

I received a wonderful gray chemo hoodie in the mail. It is from an anonymous “gifter”.  i would love to know who sent it.  It’s a chemo hoodie.

I wore it today instead of my Lululemon army fatigue one.  However, I still need to go into chemo as a warrior.  I just happen to see an army fatigue buff that goes perfectly with my chemo.  I am wearing it in the picture with Gail

I have an update to do for the last few days but I’m going downhill quickly so I need to sign off now.  Hopefully I’ll have a chance to get that posted at some point tomorrow.

If you don’t hear from me for a few days please don’t worry.  As I’ve said, my head and eyes make screen time difficult.

I am feeling the love today. I am blessed to be surrounded by so many kind people.

Valentine’s Day is the perfect day for acts of kindness. In my opinion this is the perfect song for Valentine’s Day.

Love this song!!

Steph flew back this morning – after a 3 hour delay. Ugh – winter travel! We had such a great visit. I miss her already.

I managed to get a skate in today. Although I didn’t have the energy to do the full 15.6 – did about 12k. I have been feeling very fatigued the last few days so between that and the storm I haven’t done much. The fresh air felt great.

Time for a nap!!

Hi All

Once again, sorry for the delay in posting. It’s been a roller coaster.

I find more and more that I feel the need to be hunkered down. The snow storm reinforced that feeling. I am writing this post in my bed with this beautiful view of the winter wonderland.

I have good days, or partial good days, and then not so good. Chemo really affects my head with headaches and eye stain. I find I don’t like being in front of the screen – whether it’s a computer, my iPhone, or TV. At times I feel the need to wear sunglasses in the house – but I don’t (That feels like a slippery slope). It’s bad enough looking like a cancer patient, let alone an alcoholic with a brutal hangover wearing sunglasses indoors. ( Although chemo really does feel like a really bad hangover).

Audiobooks remain my best friend since even reading bothers me and I have only been able to start watching TV in the last day. This is why I find it challenging to post blogs as often as I would like. Not to mention, when I feel good I want to to use that energy to go for a skate or widdle away at my to do list. As a result, I’m behind on responding to text messages, emails and all things that demand screen time. Apologies to all for the messages I haven’t responded to – I do appreciate the love and support.

I was getting a ton of sleep until Friday but since Friday I’ve been having sleep issues. I only had 5 1/2 hours sleep Friday night and Saturday night. I was exhausted on Sunday so I managed to get 7 hours but Monday and Tuesday I only slept about 4 1/2, so I should nap during the day (I do try but haven’t been successful at falling asleep). This is not like me. I’m normally a great sleeper so I need to figure out what’s going on. I seem to wake up at 4:30 in the morning and I’m very hungry. I find if I don’t eat I feel nauseous so I end up getting up to make myself something and then – that’s it – I can’t go back to sleep. I’m sure the lack of sleep is contributing to the constant headache. Hopefully this will normalize in the next day or so.

It has been busy since I have had company; meaning when I am not sleeping/resting, I am spending time with them. My wonderful daughter Stephanie’s been here and has set the standard for caring. She has done a ton of cooking, grocery shopping, cleaning, head massages when I have a headache and more. She is on a mission to ensure everything is taken care of. It is a weird position to be in – taking in all this care. I am resistant at times but getting better at surrendering to it. She clearly loves doing it – which makes it easier to surrender.

My kids are constantly lecturing me that I try to do too much once I start to feel a bit better. Perhaps they are right – but I will still argue the point. I do notice that around day 7pm my energy really starts to wane. This happened last round as well. My body feels weak, I feel out of breath going up and down stairs I can feel a bit dizzy at times. As I mentioned before I’m convinced this is related to my blood stats plummeting and then starting to rebuild. I’ve noticed overall my energy is lower this round than past. All to be expected.

In addition to my daughter being here, my aunt, cousin and my cousin’s two-year-old came to visit for three days and three nights. We had a full house! I haven’t seen my cousin and my first cousin once removed (i.e. my cousin’s cousin, Judy) in well over a year. It was wonderful to see them all. Jud, the 2 years old, is full of spunk and is as smart as a whip. She has the face of an angel and a killer personality. She will be a force to be reckoned with when she grows up. Her spirit reminds me of Steph at that age. I forgot how busy they are at the age.

It is great to have so much time with family, but I must say, it is tiring as well. I feel “off” most if not all of the time. I’m an extravert, energized by being around people. However, these days I find I am craving quiet time in a way I have never before.

As I said in my last post I really have found this round difficult. However, I started to rally on Saturday and managed to get out for a skate Saturday, Sunday and Monday. Those skates are so healing for me. Despite that I was feeling so bad this round I actually think I was stronger on the Saturday and Sunday than I was during the 2 previous rounds. It makes me feel like I’m not losing all my muscle which is really good for my mind even though I feel physically exhausted afterwards and need to rest. I wasn’t feeling as good Monday and Tuesday. The headaches are back and I find my eyes feel strained.

I have a few new side effects that are bothering me. The worst being my fingers. One of the side effects of chemotherapy is something called neuropath. Peripheral neuropath is a nerve disorder that can cause weakness, numbness, tingling, and pain in the fingers and toes. I was told that this really wouldn’t be an issue until I switch to the next chemo drug, however, it really seems to be hitting me quite hard now. My fingers constantly feel like they’ve been completely frostbitten and they are in that process of thawing out – where you have pain numbness and itching at the same time. I’m now constantly rubbing and scratching them. It doesn’t seem to be impacting my toes as severely, although my toes and the bottom of my feet go white frequently. I’m pretty concerned since I wasn’t supposed to have this until the next chemo which makes me worried that the next chemo is going to make this so much worse. There’s already been some concern over the whiteness and my fingers and toes which is why they have scheduled me to see another specialist in March.

The other thing I’ve noticed is I have some funny red spots on my skin. Particularly on my chest. They are a bit sore at times. I am not quite sure what this is but will discuss with my doctor.

I’ve been doing very well with my mouth care so no mouth sores. I find I can still put lemon in my water/tea and eat some citrus fruit. I’m just careful to do this in moderation. Lemon is so good for you – cleansing and alkaline for the system – so even though they tell you not to have it, I’ve been consuming it as often as I can. I use the feeling in my mouth to determined how much or little I can have. If I start to get the tingly feeling in my mouth I cut back until the next day. Steph brought me some of her homemade charcoal teeth whitening paste so I’ve also added that to my mouth care regime. Fingers crossed that my mouth holds out.

I am listening to Robin Roberts’ (anchor of Good Morning America) book – Everybody’s Got Something. She had triple negative breast cancer. Five years later she was diagnosed with a rare life threatening blood disorder and had to have a bone marrow transplant. This was a result of the chemo treatments for TNBC (I have been warned of this risk – it is small). I learned in that book that all the drugs and steroids really have an impact on mood as well. Particularly, for people like me who never take any prescription or over the counter drugs. I’ve certainly noticed that my mood feels off at times. I figured it’s just because I don’t feel well and have headaches. I didn’t really think about how the actual drugs affect my mood. It is helpful to understand this.

My appetite has come back the last couple of days so I’ve been catching up on the calories I missed last week. My taste buds are definitely being impacted by chemo – making it hard to resist salt. Steph has been using extra herbs and spices to make meals more tasty. They are tasty indeed!!

Stephanie was supposed to fly out yesterday. Of course yesterday was the big storm. We kept checking the departures and it seems like 80% of the flights out of the Ottawa airport were cancelled but hers wasn’t. When we arrived at the airport it was dead. The flight cancellations were up to 90% but hers was still scheduled to go. She checked her bag, got through security, to her gate and about 20 minutes later was told her flight was delayed for an hour. There were than two more delays and they were told their plane was still stranded in Toronto. As you might’ve suspected her flight was ultimately cancelled. I was thrilled!!! Lol. I really didn’t feel like I got my fill of alone time with her since I was sick and sleeping for days. She now leaves tomorrow morning. So we have a bonus today!!! So far it has been a quiet but wonderful one. I have much to be grateful for.

I know some of you get very concerned when I don’t post. I love that you check in via text. Please continue to do so. Just don’t get concerned if I don’t respond. I am living a little more low tech right now – just out of the need to rest and due to my eyes and headaches. On that note, check out the progress on the puzzle… (I putter at it here and there). Can any of you guess what location this image of the puzzle is from? Let me know in the comments.

This round has definitely been tougher so far. I have been in bed since I got home on Tuesday for the most part. I got out for a short walk yesterday. Today is the first day I was able to get on the trainer. I just did 20 minutes.

I have been more nauseous this time but the drugs seem to help.

I have been sleeping a ton which is good.

I can’t wait to start feeling better. I feel like a slug!!

This round is hitting me hard. I had a very challenging evening with hot and cold flashes, head aches, nausea, stomach cramps and general overall illness and weakness.

My digestive system seems to shut down for the first 18+ hours. Therefore despite drinking lots of water my kidney function slows – meaning a lot of bloating which is uncomfortable. I also do not seem to be able to digest food properly so I need to figure out when and what to eat the day of chemo. The lack of digestion resulted in extreme discomfort on the Tuesday night.

I really wasn’t sure whether I’d be able to make it to my ultrasound today. However I woke up feeling better.

The ultrasound is a milestone since it measures how I’m responding to the chemo. My oncologist was expecting a response after the second round. The radiologist came to talk to me after he read the results. The good news is the tumour hasn’t grown. The bad news is there’s been no change in the tumour. I’m really not sure what that means yet but I guess I will have another ultrasound after round 4. A bit disappointed. I hope it doesn’t mean increasing the number of rounds.

I am home and back in bed. It will be a day for music and an audio book in the dark and lots of sleep.

Kinda out of it.  Chemo hitting head and brain hard so bare with me.  My eyes go wonky after chemo so I’m using Siri to help with some dictation and trying to edit.  Who knows what she might come up with – there have been some doozies in the past.  Best one was the substitution of “orgasm” for the word organization – that can really change the direction of a conversation – fast. I’m just saying, be prepared.

Catching Up

Steph made it.  She arrived Saturday at 5:30pm – delayed by several hours.

Sunday we got out for a skate after my picc flush and bandage change.  It was awesome.  We did the full 15.6km and I felt strong.

Steph picked up a few ingredients and started moving into Chef mode.  She has been cooking and baking ever since.  She has ensured every angle of my chemo nutrition is covered.  I will be well stocked with awesome high nutrient rich foods. (How lucky am I?!?)

Yesterday we were at the hospital in the morning for blood work, pre and post chemo drug pick up and the appointment with the oncologist.  As you know from my previous post, my brain MRI is clear which is an enormous relief.

The doctor examined my tumour.   The tumour hasn’t shrunk but it’s not growing either, so he’s happy with that.  He said the chemo could be working by killing the cells and it’s just hard dead cell tissue. So he ordered an ultrasound to see how it’s responding.  I go tomorrow morning at 9:30.

Both the doctor and nurse think I am doing an amazing job.  His nurse is so impressed with my skating.  She said I’m a “true cancer warrior”!!  Being active when you can and drinking lots of fluid is so helpful.  The pat on the backs feel really good right now !! :-).

Chemo today.  I was lucky to get module B again with the prime spot by the big window.  Two times in a row!  I keep telling the nurses how much I love it so hopefully I’ll keep getting that spot.  It’s so much better than the spot I was at for the first round.

Before chemo starts there’s some prep work.  They flush my picc line and give me a bag of saline and take my vitals.  My vitals are great.  My blood pressure remains low (I had a few crazy spikes during all my tests – but even those were lower that what many might have.  They were just high for me). The nurse is very envious of my low resting heart rate (52 – although I wasn’t completely resting)!!  She said she has been trying to lower hers for years. Again – I will take all the pats on my back I can get. 🙂

I made a new chemo friend today. His name is “M” (figured i shouldn’t share his name – you never know).  He is the only other person I’ve seen there that is younger and looks like he has taken good care of himself.  I would say he is in his 40s.  He came over to introduce himself and chat with me.  He was with his wife and I met her as well.  What a story!  He was diagnosed with adrenal cancer six years ago.  It is a very very rare cancer.  One of the most rare apparently.  I think he said that one in 2.5 million get his specific type of adrenal cancer.  The prognosis is grim.  When he was diagnosed they only gave him weeks to live.  He has four kids, currently ranging in age from 8 to 17; meaning at the time of diagnosis his youngest would’ve been two.  He asked the doctors to do what they could to give him enough time to make it through Christmas with his kids.  They did surgery and remove the 13cm tumor.  The tumour was pressing on other organs including his kidneys and liver.  However, apparently they only took the tumour out.  Subsequent to that, he went to a cancer centre in Michigan that specializes in this type of cancer.  He discovered that the surgery should’ve been more aggressive and they should’ve taken out part of his liver and kidneys since they were touching .  He then had a subsequent surgery that apparently was crazy.  It was supposed to be a three hour surgery but when they opened him up, it was like a rats nest.  They had to cancel all the other surgeries for the day to work on him.  His surgery took 13 hours with multiple surgeons.  He then had chemo. Here he is six years later!!  Really amazing.  I am certain his attitude played a part; he seems like a super upbeat positive warrior type.

Unfortunately, the cancer has come back.  So he’s in a clinical trial. Apparently, there’s a genetic component (he named the gene but I forget). The chemo will affect this mutated gene in some fashion.  He goes in weekly so I’ll likely see him again in a couple weeks.  He’s been working on and off during this.  He owns his own company and has a number of great employees so lucky for him it’s been manageable.  He told me his two youngest kids still don’t know he has cancer.  They just think he’s a stay at home dad at times.  He said they are starting to ask questions.  The good news is this chemo he’s having doesn’t have side effects other than he can’t be exposed to any UV rays so is to completely cover up when he’s outside. He’s hoping he can keep it from his younger kids a little longer.  I’m still processing the conversation!!!

Both he and his wife were lovely.  Here they are going through all of this and he went out of his way to introduce himself and share his story.  On top of that they made a point of making me feel so good.  They told me I was very striking with my bald head.  His wife said she saw me as soon as she walked in and thought “wow there’s a person that looks good during chemo!!”  Who would’ve ever thought I would get that kind of complement!  I look forward to seeing M in two weeks!!

I’ve met some interesting people along the way so far.  I didn’t post about it, but a couple of weeks ago I met a mother and daughter.  They both have cancer.  The mother was diagnosed first with breast cancer (she was about five years older than me).  Her daughter who is the same age as my daughter was diagnosed with cervical cancer a couple of weeks later.  Devastated her mom – I cant begin to imagine!

I ended up having a profound chat with them.  Unfortunately they’re being treated at a different hospital so I likely won’t see them again.  I felt such a connection to these two.  The daughter is even super tall like my Steph.  I said to them “my daughter and I are always looking for meaningful bonding activities – but this is taking it to the extreme!”  You know how you meet people and you just know you can make that kind of statement and they will find humour in it – they did.  They were awesome.  The mom had opened up to me first and told me the story and then the three of us had a great chat that ended in a huge group hug.  The mom was disappointed we were not being treated in the same center.  We would have loved to see each other again.

I’m trying to wrap this post up before I go down for the count.  This one seems to be hitting my head hard.  I have brain fog big time.  Difficult for me to even remember what I’m saying at some points.  I think it will be lights out in and an audiobook shortly.

If I’m off-line for a couple days don’t be alarmed.  Sometimes I’m just not up to it.  I will try to post if I know anything about the ultrasound.

BTW – Steph also had an army fatigue shirt on today.  We are a warrior team! You will notice I didn’t wear my wig.  I was told not to.  When I get chemo I cycle between being hot and cold.  I ended up taking my chemo cap off since I was more comfortable.  More and more I’m embracing my bald head.  I did have make up on and did my best to look strong and warrior like!!!

Love you all. Your support means so much to me.

Quick update – brain MRI was clear!! :-).   More to come later.