Tuesday 31 December 2013

Day 113: Happy new year!

It's nearly 9p on New Year's Eve. Families are lined up along the Manly harbour foreshore to see the early fireworks that are due to start shortly. Remie is asleep upstairs and I am enjoying not fighting the crowds. Now, 8 minutes later, I have just seen the spectacular fireworks display over the entire harbour on TV (and for those who are wondering, the design on the bridge was some sort of Reg Mombassa (from Mambo fame) robotic/lunar face (from what I can tell). This morning I woke up to the news that a very good college friend has recently been diagnosed with lymphoma. It rocked my world. It's bad enough that this stuff has happened to me; it's not supposed to happen to good friends whom I love. I know she will be fine. But I'm sad she has to go through the fear of the unknown. And I don't like being on the other side of the world and not being able to help. I'm thinking that "other side" theme that I experienced at the end of 2013 is likely to continue in 2014. By that I mean my perspective of being on "the other side": of receiving, not giving, meals on Meal Train; of not having the energy to rally; of covering up and thinking the sun is too bright (during my week post-chemo) and of not trying too hard on the social scene. It seems to be a bit of a gift to learn to see things from a different perspective and learn to appreciate how hard some people have it. Wishing you all a happy and healthy 2014 in which we all strive to find the good bits.

Sunday 29 December 2013

Day 111: The grey area

We've had a few days of little adventures (snorkelling at Shelley Beach and BBQing/swimming at Manly Dam), visiting with friends and chilling. Nice. The downside is that, since we're still at home, I get sucked into chores (like taking down the Christmas tree today). We've also been spending lots of time together as a family, and it's becoming apparent that it'd be good to shake that up a bit. I've managed to forget my plight from time to time as I'm feeling pretty good. My hair loss has slowed (I even still have eyelashes and eyebrows) so it looks like I'll ring in the new year without looking like a chemo patient. I'm tired, but no more so than usual with 2 kids. I am finding that my patience is very thin, but that could be too much togetherness, not enough real exercise and underlying frustration with my lower than normal level of energy. This battle is seriously a mental one for me. I have to make the effort to stay on top and be positive otherwise the hole could get deep. There is a chance that, at the end of these nearly 6 months of treatment I will be no better off than I am now. I can't think about that. The other day a friend was lamenting the colour of her hair, and I pointed out her luck in having hair to colour but didn't think too much about the state of mine. I am watching the "happy day" links in our countdown chain being taken off and the black links approaching. That can get me down if I dwell on it. I am the "fun planner" in our family but am struggling to keep it going. That's frustrating as I want to make the most of all the good days and am watching so many people go about their holiday adventures blissfully unappreciative of their good health. As I tell my kids, life isn't fair. And, as I've been told, this, too, shall pass. I'm going to go to bed believing that it all looks rosier in the morning.

Thursday 26 December 2013

Day 108: "Staycation"

After a day of playing in the surf and snorkelling at a harbour beach, I decided I needed to wash my thinning hair. That went reasonably well, but the post-shower hair combing saw a further loss of hair. Oh dear. I'm told I can still pull off the female chemo patient"comb over", but I anticipate that, too, shall pass as the next round works its magic. We made the most of me feeling good, the nice weather and our local surrounds today by playing in the surf at our local ocean beach after brekkie at Havana Beach. We bumped into lots of friends at the beach and enjoyed the sense of community. After a few hours out of the sun at home, we headed to Fairlight beach on the harbour to snorkel. The kids had great fun finding fish and diving down. They wandered the rocks for a bit before Remie's Kindy bestie came for a quick swim. We've made our list of things we want to do in the next week and a half to enjoy our holiday at home. I'm hoping to fit in as much as possible before I feel terrible again

Day 107: Slowing down after Christmas

Today was a wonderful day of pottering and generally slowing down after the past few days of packing in as much as possible to celebrate Christmas, old friends and feeling good. On Christmas eve day we did a 4 hour sailing cruise on the harbour with Greg, Lee and Mr. And Mrs. T. Nick loved the sailing, Alex and Lee helped and the rest of us enjoyed seeing the sights and catching up (Remie loved doing her art). Nick, the kids and I then raced back to Manly to go to the 4.40p kids' service at our local church where Remie was an angel (hey, there were camels and a donkey walking down the aisle, so stranger things have happened). We got home, fed and bathed they'd kids, passed them off to Netty, who was spending the night, and headed into Manly to meet our visitors for dinner. It was another great night together. Nick and I went home, and together with Netty made sure all was ready for morning. At 6a Remie was very excited to check out whether Santa had come. Alex was up shortly thereafter and the frenzy started. The kids would've town everything open by 6.30a if we'd let them! We managed to drag it out until about 7.30a. We then had to get sorted for the relocation of our annual beach gathering to our house due to rain. It was a wonderful event with Fran and Emma and kids, p,us Steph and Mark and kids and guests and Greg and Lee. We convinced the latter to join us for lunch at Rachel's mum's, and as always Liz outdid herself. Greg, Lee, Alex and I left before dessert to get the boys back to their hotel to get to the airport for their flight. Alex and I got home a bit before 5p and Nick and Remie arrived shortly thereafter. It really was a great two days. I feel very lucky to have been able to spend some time with Greg, Lee and Mr. and Mrs. T. They are extended family so it was great to be able to see them around the holiday. I am thrilled to have had the energy to pull off the packed schedule. I suspect I'll get exhausted soon. I am grateful that Rachel, Liz and their family welcome us into their family on Christmas. It has made being away from our own families much better. And I am blessed by the love and support of people near and far. I am now fortified for the next round, but I will appreciate the heck out of the next week and a half until that happens. Happy Boxing Day!

Monday 23 December 2013

Day 104: Visiting with old friends

It is always interesting to find that we have the energy to do whatever we set as a priority regardless of where we are in our lives. At about 6a this morning, My dear uni friend, Greg, arrived in Sydney with his partner and family. I have been hoping that I would feel good enough to spend some good time with them, and I am! I actually think that I would rally no matter what, but I am excited that it is easy. Nick, the kids and I took a ferry into the city about 10a to meet them. Alex marked this momentous occasion by wearing a special tie, and Remie picked her favourite outfit and accessories. It was so exciting to see Greg and Lee at Circular Quay. We then found Liz and Art at the Four Seasons and ventured off to the Rocks in the 35 degree heat. Our gastronomic tour took in The Lord Nelson pub (which we had all to ourselves) and lunch at Pony. The kids took to the group like long-lost friends, with Alex holding Liz's hand and Remie taking on Lee as her new BFF. I so love that time and distance mean nothing to friendships that have been built over 25 years, and that my kids understand that. We left our friends to the bridge climb while we went home. Nick and the kids had a swim while I rested. Emma came to babysit so Nick and I headed back into the city for dinner with our friends. It was a wonderful night at Cafe Sydney (and we even remembered to take a few pictures) that I will treasure as I soldier on in the next few months. As we were all tired, we called it an early night to rest up for a day on the harbour tomorrow. I went to bed feeling very lucky to have this fabulous interlude in my months of treatment. I am constantly reminded of the amazing support of all the wonderful people in my life, and hope that my kids can be as lucky to find such amazing people and create their own extended families during their lives.

Sunday 22 December 2013

Day 103: Human again

I woke up feeling like I had returned to the world as a relatively normal, kind person. Woohoo! It is so much better to be part of the world and enjoy it than to be in one's own little reality and cranky about it.

As part of my return to the world, I enjoyed a coffee made for me by Alex. Divine. After brekkie it was off to Nippers, which was very exciting as Santa was coming for a visit (which he does every year by surf life saving boat - hilarious). The kids and I scootered/walked to the beach while Nick was out for a bike ride. We spent the day at the beach doing Nippers, visiting with Roz and Simon and kids, hanging out and having a swim.  It was great fun, and I lasted until noon before it was time to head home.

I was ravenous and made a huge and healthy lunch for all. I may have easily eaten for about 4. The afternoon consisted of quiet time and "Santa Claus is Coming to Town" DVD. It was over 30 degrees, so we appreciated our cool house.

We made it out to Christmas drinks at Vicki and Claude's, our first festive event of the year. It was so good to feel good enough to be able to participate in a social celebration. The kids came along and Remie helped prepare and serve some treats. We had sushi on the way home which was another fun and enjoyable experience.

Being occupied with not feeling good has certainly given me another perspective on Christmas. The woes of shopping and the pains of hangovers are far from my list of worries. I hope to take it all much less for granted next year and focus n being as kind to people as others have been to me.

Saturday 21 December 2013

Day 102: Mentally under a cloud

I was a grumpy puss today.  I was under that awful cloud of negativity and self-pity and couldn't get out of it, although I did try, until the end of the day. This did remind me that it takes an awful lot of energy to be down.

I woke up tired, having had Remie in twice from 2-3a. Then she was incessant, and Nick was slow in dealing with her and Alex was making lots of noise and blah blah blah. Nothing was right, least of all me.  My tummy was still a bit sore and my head hurt. After yelling at everyone, I decided to take myself off for a walk to meet Jen and Rach for brekkie.

Getting out and moving in fresh air cheered me up a bit, though I was a bit loopy and dizzy. The brekkie conversation made me sadly realise what a different reality I am in at the moment: there are no Christmas drinks, dinners or parties this year. It has not exactly been a festive season.

I went off to the markets, where I was joined by my family.  After a bit of shopping it was home and I went back to bed. Lunch and some Mersyndol for my headache made me feel better, as did sitting around the pool with Steph watching the kids swim. I had no more energy than that, which added to my annoyance on a lovely day. We made the effort to get out for a walk at South Curly to see the sea, but the kids fought, the sun was hot and I got cross.

I started to re-balance after a shower (my hair loss seems to have slowed, partly because so much is already gone) and a few minutes of reading the paper while the kids were in their rooms. My tummy was feeling better, so we all ate together very early. Watching "Rudolf the Red-nosed Reindeer" followed by "The Grinch" cheered me up, as did a bit of final present-wrapping to Xmas music once the kids had gone to bed.

I am now feeling nearly human and more positive. I know that I am always going to get frustrated with my inability to do what I usually do, but I really need to find a strategy so that I don't let my physical limitations drag me so far down emotionally and mentally. Thankfully tomorrow is another day.

Friday 20 December 2013

Day 101: Surviving

The kookaburras woke me with their morning song at 4.45a (!). Yes, tomorrow is summer solstice, the longest day of the year. That means early sunrises and very early-rising, loud Australian birds. If only that were the biggest of my worries.

My gut was still not happy this morning, but it settled fairly quickly.  After a quick brekkie, Susan came to do a little Christmas yoga with the kids.  Nick and i were treated to a fabulous "presentation" incorporating many of the poses the kids have been learning. The kids headed out on their adventures with friends again, and I was back in bed at 9.30a exhausted. I think it was already 26 degrees Celsius and was predicted to get hotter.

I got up at 11.30a feeling much better and had a family lunch as the kids had returned. I was still a bit queasy but ate fine, including my favourite ginger ale and Salada (Saltines) crackers. After some pottering around, we headed down to Little Manly beach, just down the road. We were armed with a kids' kayak, boogie board and sand toys. The temperature was reading 37 degrees so a swim was refreshing. As a total beach, sun and heat lover, I was disappointed to find that I felt really hot and overwhelmed by the brightness despite my sunnies and hat. I headed home after about an hour feeling tired and beat.

We had a few people drop by with food.  The kids finished Ing's spag bol before she'd left and Lucy dropped off some risotto. Rosalie popped in to say hi and tell us that she's home. All were heading out for the evening and, although I was feeling eft behind, I most definitely did not have the energy or desire to go out.

The evening routine was fine, with all tired enough to go quietly to bed. I was ready for bed myself after Nick and I finished dinner at 8p. I am feeling that enduring this round seems to be a bit harder. I loathe to think about round 5 is going to be like. I'm just focusing on taking one day at a time.

It's now nearly 9p and the thunder and lightening have brought cooling rain. Its definitely time for bed.  I am heartened by my cousin Justin's words of encouragement as follows: "I hope the bad days are few and we can soon look back on this time and smile".


Thursday 19 December 2013

Day 100: The Real Aftermath

My pattern with this "FEC" treatment seems to be that chemo day leaves me hazy, the next day I am ok but queasy and tired, and then the day after that I get the brunt of it. Good thing I've worked it out with only one more to go (before the switch to Docetaxel only).

I had a good sleep but woke early, thinking all was good because I didn't have the headache I had last time.  Whew. Alex brought toast and iced cranberry tea, so I popped my Dex and finished a few things online while the kids went to their Advent calendars. After a shower and eggs for brekkie, I was feeling tired and lay down on the lounge. Danielle and Hugo came to get Remie at 8a for her day with them, and after waving them off I headed back to bed. I got up to say hi to Lucy when she and Tom picked up Alex at 9a, said bye to Nick, who headed out on errands, and went back to bed feeling like death warmed over.

I woke up at 11.30a feeling better.  Nick and I had lunch (mine was crackers, a few slices of turkey and some ginger ale). Steph brought over a green smoothie to help me get healthy.

I was feeling good enough to get to my doctor's appointment at 1.30p, simply to get updated referrals for my oncologists. Dr. Karen was as matter-of-fact as usual, telling us that there are no guarantees and we should enjoy all the good stuff that's mixed in with the bad.

As we picked up aa few final Xmas items in the shopping ventre where the doctors' office is, I bumped into the librarian from the prep/junior school with which the kids' pre-school was affiliated.  I have always admired Victoria, who sorted me out quickly for the remaining gifts I had to buy. There was one of those good moments.

We picked up Remie from her play date, and she was beaming. We went to the pool, where we met Alex, Tom, Lucy and crew, and it was time for the year's final swim lessons. I got in and did 200m in fins again. Refreshing.  Even Nick got in and swam a few laps.

After a quick kids' dinner, it was reading and bed.  Remie made it until 6.20p, while Alex chatted with Nick and me as we ate.  He headed to bed at 7p, and I was in bed at 8p. It's now 8.25 and getting dark. I feel much better after dinner and water.  I'm hoping for another good sleep and possibly feeling more human tomorrow.

Wednesday 18 December 2013

Day 99: The Aftermath, Round 2

After being awake for a few hours in the night feeling not right in my skin, I was awoken at 6.40a to a lovely delivery of iced cranberry tea and some toast with avocado on a bed tray, all to accompany my first go of Dex (dexmethsone, a steroidal anti-nausea med). My gut was sore, my mouth felt funny and my hair kept falling out (I'm now sleeping in a chemo beanie to collect all the hair that is falling out at night), but other than that the day started off relatively bright. It had to: it was the last day of school for the year!

After a brekkie of scrambled eggs, Nick dropped the kids and me by school.  We picked up some sushi at the shop for lunch then headed into school. I felt a bit fragile (but not as loopy as after round 1) as I waited with some friends while the kids lined up to greet the "special visitor".  Santa arrived in a horse-drawn carriage and handed pressies to the teachers. Fun was had by all!

Next up were the K-2 picnics. Parents from Remie's class set up the table and the kids descended on the "brunch food". Miss C was given her gift by the class mums, and the kids did their Secret Santa. By this time I was feeling ready to go home, so I grabbed a ride with my neighbour, Steph.

I was feeling ok, but a bit tired.  I cleaned my mouth (can you tell I am fearful of getting mouth sores?), gave myself my Nulasta shot (white blood cell booster) and flopped on the sun lounge, strategically positioned in the shade. Jono came by to drop off some things before they leave tomorrow, then it was straight to bed for me.

I woke up 2.5 hours later feeling less wiped out. The kids came home from school very excited and went next door to Steph's for a swim with P and R.  Louise dropped dinner by, the kids ate and it was bedtime. At this point I could feel my energy dropping.

Nick and I tucked into dinner and then switched on the TV. About this point I started to feel like I had the flu with a sore gut.  So it's 9.20p and I'll turn off the light shortly. I have a bottle of water and my meds by my bed to hopefully stave off that awful headache I had on day 3 last time. Good night.

Monday 16 December 2013

Day 98: Round 2. 4 to go. At the 1/3 race mark.

It was a beautiful morning for a drive in Errol with Rach as my chauffeur. Steph took the kids to French, Nick headed to work and off we went.

I had a 9a appointment with Dr. Fran to check in, get the ok on yesterday's blood test results and discuss how it all went. I passed the tests and left with prescriptions for 2anti-nausea meds plus one for a sleeping pill to counteract the steroid anti-nausea. It was time to cross the street and go to "chemo cottage".

We waited 5 minutes for my recliner (the 4th one with the old cap machine)  to be vacated.  I put on my hoody and socks and settled in. Candy sprayed my hair with water, strapped on the cold cap and brought me a lovely blanket. That was followed by the lovely nurse working her magic and finding a vein. This time it was in the back of my hand, which was more sensitive than anywhere to date. The saline drip started and I was brought an anti-nausea tablet. At about 9.45a the bags of anti-nausea and chemo drugs started.

Rach and I chatted and the nurse told me it was time for the ice chips. I cheekily asked for an ice block and she magically produced one, followed by another. Bonus. Sue showed up with fresh juices which was divine. We all chatted for awhile, and when she had to leave Rach and I eagerly applied ourselves to finding new music. Ruth appeared as we were nearing the end and provided more great conversation, then it was time to head out about 1p.

After another enjoyable drive in Errol we stopped for a late lunch on the way home at 40 Beans, as per round 1. We got home just before Emma and the kids and sat outside while she sorted them out with afternoon tea and Xmas cookie decorating.

It's 5.30p and I am resting. I am definitely spaced out and feel a bit more queasy and tired than I did last time.  Perhaps the big sandwich for lunch wasn't such a great idea. I am drinking as much water as I can stomach (the taste has already gone metallic) and doubt I'll have much for dinner. All I can do is hope for a good rest and recovery.

Day 97: Veins

Hair schmair. After dropping off the kids at school this morning, i went for my day-before-chemo blood test. This is the one the oncologist has ordered to check on my white and red blood cell and platelet count plus liver function and myriad other things. Blood tests have become routine for me over the past few years preceded by years of donating blood in my healthy youth.  Sure I had some times when I suffered from low blood pressure and couldn't get the pint required, but usually it's ok.

Not today. Scott got one vial out of the usual vein in the inside of my elbow, but then it stopped. Since we needed 2 vials, he found another vein and got the rest. The first one is slightly bruised, which hasn't happened to me for ages. Nick pointed out that I did have a few drinks on Saturday night, then stood on the beach in the heat on Sunday morning for a few hours and then drank sangria for the afternoon. Dehydration maybe? D'oh. I've had about 10 pints of water since.

This minor incident made me conscious of the bigger possible issues. If finding a suitable vein proves too difficult, nurses recommend the installation of a "port", a temporary under-skin access to a vein around the collarbone. Apparently it makes the IV process quicker, but I'd like to avoid that if possible as is quite noticeable and it is summertime. Then there's possibility of the veins around the IV site getting hard or the chemo drugs leeching from the entry vein and harming the surrounding tissue.

I think I'd prefer the anguish and annoyance of pulling out another handful of hair thanks (there's that perspective thing again).

Sunday 15 December 2013

Day 96: Not quite up

Walking down to town to meet some friends for dinner last night in a too-short dress and high wedges for me (I was trying hard not to look like i have a disease, I think), I turned to Nick and said, "My hip squeaks, I hurt my thumb, my hair is falling out in handfuls and I go in for another round of chemo in 3 day; I don't think this is my finest hour."  I have to confess to bring a bit daunted by the reality of it all at the moment.

My hair came out massively in the shower today. More came out when I ran my prescribed wide-tooth comb through it. Bummer. I have stopped taking my vitamins and other naturopathic boosters as I am supposed to do 2 days before treatment. There is one more yellow link on our countdown chain before the stretch of 7 blacks.

I did have a very uplifting girls' pre-chemo champagne (replaced by sangria today) lunch. The dozen or so ladies were fabulous as there was much laughter. I had a good giggle when Kayleen told me that her daughter, who is in Remie's Kindy class, told her big sister that they have to look after Remie as her mum is sick with asthma (delivered in a very serious tone).  Listening may not always be a kindergartener's strength (tee hee).

I have had many people comment, email and send Facebook messages in response to my posts since I started.  I've been told that it's amazing to see what it's actually like on this side, and heard others tell me it's like I am there talking to them, making the distance seem smaller. I am so very, very thankful for all of you who are following along and "listening" to me share my view of this experience. Your presence and feedback strengthens me. I just went back to the quote Deb sent me when I had my meltdown in hospital: "Courage doesn't always roar. Sometimes courage is that little voice at the end of the day that says I'll try again tomorrow".  Its like you all are here with me. Your support is invaluable to me as the marathon-like nature of this journey stretches before me.  Thank you. 

Friday 13 December 2013

Day 94: Shedding hair

It's Friday the 13th. Spooky. My hair is starting to come out.  Spooky. I've heard it starts with a tender scalp. Tick. And then it starts coming out in handfuls. Tick (albeit small handfuls so far). Apparently it starts to happen around the second chemo cycle when one is cold capping.  Tick. And if one can persevere through the second cycle without shaving it will be clear whether the cold cap is working. Time will tell....

Today Nick and I met with my radiation oncologist, Dr. Susan.  She is very intense. She recapped for us her version of what had happened and where we were. All good. She ran through the role of radiotherapy in the process of preventing recurrence. We learned a few new things. She ran lots of statistics by us, which s the first time to date this has happened. She was clear that the choice is mine.  I immediately signed up ad I had already decided to bring on all the big guns in this fight. She mentioned the possibility of genetic testing since one of my maternal aunts had ovarian cancer. I signed up for that, too, if it was recommended by all my doctors.

Off to sleep hoping I don't wake up with too much hair on my pillow. The reality is definitely harder to digest than the prospect.

Thursday 12 December 2013

Day 93: Tired

Given how tired I am this week I can only imagine that I'll be in bed by 7p after my treatment next Tuesday! I even had some down time today pottering around the house. It'll be back to day sleeps next week for sure.

I had an early Christmas present this morning: coffee in bed delivered by Alex. Nick was away last night so Alex decided to get my coffee and Remie's (oat)milk by himself. Very thoughtful.

Then Remie made me smile when she received her medal for "School Spirit" at the K-2 presentation assembly. She was so very excited and I was proud.

Both kids have been pretty good lately, taking my treatments and side effects in their strides. They are aware but seem to have faith that we'll all get through it and they won't be too worse off with me not being able to be there to do things with them. I really hope that lasts into next week at least.

Wednesday 11 December 2013

Day 92: Need to slow down

I am clearly a Type A on deadline: after getting the kids and Remie's friend to the girls' 8.30a tennis lesson, I picked up a few things at the shops. Then it was Remie's Kindy awards session and a quick run to Mel's clinic to pick up more vitamins. From there I picked up Sue in Errol and we spent over 3 hours (we had to pay for parking!) at the mall shopping. It was on to school pick up and a swim for the kids in Steph's pool with P and R. Follow that all up with closet cleaning once the kids were in bed and I'm exhausted. I will try to get some rest time in tomorrow but I really feel like I need to make the most of feeling good and having energy as it will all change in 6 days.

Tuesday 10 December 2013

Day 91: Yoga

I finally got back to Sam's ashtanga class today for the first time since late September. It was great to be there and was a bit harder than usual due to the reduced strength and flexibility in my left arm due to the lymph node removal. It was worth it nonetheless.

The rest of the day was consumed with a morning tea with some of the girls from the Early Breast Cancer seminar series (there was a woman there who used the cold cap and  kept most of her hair while doing the same FEC-D regimen I am) plus pre-Christmas errand running.

Now I am tired. Apparently I am at the lowest immune system point now (10-14 days post-treatment). I'm hoping to be on the up tomorrow as its a busy remainder of the week and I'm starting to think about getting mentally prepared for next Tuesday's frozen toxic cocktails round 2.

Monday 9 December 2013

Day 90: Three months into it

It's funny how life's little things bother me less now that I have bigger fish to fry. After an exhausting early morning workout (I started tired), I chose to drive the kids to school (embarrassingly it is all of6 blocks) in Errol with the top down as the sun was shining and I needed to pick up groceries. We were rear-ended at the roundabout just outside school. It wasn't even a fender-bender (a phrase i recall from my dad) as it only broke the registration plate holder. Apparently the woman sneezed so her eyes weren't open. That's funny - but it wouldn't be if there'd been any damage or injury. But there wasn't, so the kids had a good story to tell and all is good.

I managed to get nearly all of my Christmas presents wrapped today plus all of my insurance and Medicare submissions up to date. Perhaps that is why I am exhausted and decided to pull out of the kids' school P&C (PTA in American) meeting I was planning to attend tonight). It's 9p and I'm turning out the light. I figure I have to rest up to enjoy my next 7 days before my next round on the 17th.

Sunday 8 December 2013

Day 89: What a good day to be alive

How could I not be happy to be alive and feeling great after yesterday? Add to that a glorious morning at Nippers (kids surf lifesaving), a trip to Santa during which my daughter asked for "a spell to make her stuffed animals talk" and her brother found and bought a Christmas gift for her with his own money, our annual visit to the Lindt cafe and an afternoon of Christmas carols and tree decorating?

I am somewhat concerned that I'm feeling as good as I am. As Jen said yesterday (echoing what Dr. Fran said at my first appointment), we do want to have faith the chemo is working and a few side effects demonstrate that. I hope I've felt bad enough that I don't get my dose increased in my next round. As there's nothing I can do about that, I'll just enjoy feeling good for another week or as long as it continues.

Saturday 7 December 2013

Day 88: "Shearing is caring"

About 5 years ago one of Alex's BFFs told us all in the playground that "sharing is caring".  I thought it was such a good phrase that I've adapted it to today's events.

Back in October, Sue invited the "triathlon families" around for an early dinner on 7th December, which seemed somfarvaway.  As the girls have thrown in the towel this season in support, we decided we could have a few drinks. Once I got my head around my treatment regimen and the possible hair loss that was due at this point (10 days after my first treatment), I thought it might be a great time to have Jono shave my head. We girls discussed it and mentioned it to the boys (big and not-so-big) to prepare them.

As this past week unfurled, I realised that's wasn't ready to shave as I still have all my hair. The 7 and 9 year olds, however, were keen.

We had a few drinks and a swim, and then Jono quickly set up shop. Hugh, who'd been counting down the days, was first. He was stoked! Billy was next, and Fred stepped up as a dark horse. Alex was then convinced, so he sat down.  The leaf blower came out to clean up, which was fully entertaining.

We then sorted dinner for the kids, and the next thing I saw when I looked over the balcony to "Chez Jono" was Owen in the chair.  I got choked up and had a cry with the girls. When I finished, Nick was in the chair! I am so unbelievably overwhelmed by this support that all I can do is hug the team. I will feel so very much braver when it is my turn thanks to the love and support of my friends.

The sheared 7, plus me.

The first 4, followed by...

The big boys (plus one last little one)


Friday 6 December 2013

Day 87: Life threatening?

I bumped into Sam in Coles, the grocery store across from school, just before pick up. She's been having some health issues so I asked her how she was. She told me that she's on some meds and is expected to be back to normal in 6-12 months. I sympathised with her plight and wished her well. "I'll be fine," she said.  "It's nothing like what you're going through. Mine is not life-threatening."

I hadn't thought of my journey like that since the very beginning. I don't actually feel like I am in a life-threatening condition, but I guess that's what it is. Based on breast cancer stages (2-3), I have from a 72-93% 5-year survival rate, according to the American Cancer Society. It makes me wonder what the average 5-year "life expectation6" rate is for a healthy 47 year old woman living in a first world country is. Hmmm.  As Kate said tonight at dinner, it's not worth getting bogged down by it. I think I'll just keep living me day at a time and enjoying g what I can.

Susan came for Alex's yoga session this morning. They had a ball. I had a lovely walk along the beach with Kylie and a great massage with Renee. I popped into our 2 local bike shops and found a few suitable options for Remie for a geared bike. Emma and the kids put up the tree (but it still needs to be fully decorated). And Kate came over to share a lovely night. What's not to be thankful for?

Thursday 5 December 2013

Day 86: Normal and great

I had the best workout today I've had since September.  Remie's doctor rang with the great news that her EEG we did yesterday was normal. The kids were in good form for most of the day. I think I've finally sorted out what in this journey our health insurance will cover. I had a great Sype session with my cousin Justin who is planning to come out from Hawaii in the new year.  My sister sent me funny jokes and posted hilarious comments on Facebook that made me laugh.  I had a lovely talk with my mum.  I had a glass of wine with the amazing dinner Libby brought by. And I gave Remie the 100 kisses she said she'd like to get every day. All in all, it was a fairly normal day that left me feeling great.

I learned something today that struck me as extraordinary but makes sense upon reflection: Amazingly, all of us have rogue cancer cells in our bodies - and most of the time the immune system gets rid of them... But not always. Wow. This bit of wisdom comes from the fabulous Claus in Seattle, whose son is doing some amazing work into T cell therapy for paediatric cancer patients at Seattle Children's and Juno Theraputics. It just goes to show that we don't ever really know what is going onion our bodies. All we can do is make the best of every day. 

Wednesday 4 December 2013

Day 85: Watery eyes (and other side effects)

The list of side effects for this chemo regimen I'm on include: nausea, sore mouth, tiredness, hair loss, taste changes, sun sensitivity, skin changes, pain in joints, watery or dry eyes, flu-like symptoms, diarrhoea, constipation, nail changes,  bruising and bleeding, anaemia, risk of infection and changes to the way the heart works. Today my eyes were watery on and off, forcing me to abandon my contacts and go with glasses. And my nose is a bit runny. I still think I'm doing well to have only suffered a few from that extensive list so far. I do have to be careful this week as this is when my white blood cell count is at its lowest.

Today I was thankful for my wonderful husband. He sorted the kids while i went for an early-morning walk with mt neighbor, Kate. He got us to Remie's EEG appointment on the other side of the city (will have results later this week) and negotiated my failure to bring the directional paperwork with minimal fuss. He chauffeured me to the mall and helped finish the Xmas shopping. He told me I looked beautiful even with my wild hair that I'm not supposed to wash often, brush or dry if i want to try to keep it. He brought in all the gifts and hid them after helping to clean up dinner. I feel very lucky to have him in my life.

Tuesday 3 December 2013

Day 84: A two coffee day

This morning I enjoyed my first full coffee since my treatment last week. Very exciting!

While the kids were at before-school French  I had  the most beautiful run/walk along the beach this morning. The sun was shining, the breeze was blowing and the temperature was just right. What a great way to start the day.

I went to the final session of the Early Breast Cancer seminar series where the topic was "Post treatment communication and issues". I didn't find it to be the most helpful session, I think because my perspective on this experience is a bit different. The presentation and discussion touched on possible depression after holding it together to get through treatment (I feel like I experienced that in my divorce), dealing with a changed sense of identity (I feel like I'm still doing that after my hip replacement and loss of running) and trying to sort out a new path (I have been grappling with that since having kids and staying home). I did take away the likelihood that it'll take at least 12 month post-treatment to get back to feeling like I did before diagnosis. That means I should be in good form for my 50th.

I enjoyed my second coffee this afternoon with Nadia and Chrlotte but am sad to report that a glass of wine at dinner didn't interest me. At least my nausea is gone, I dont have mouth sores and I am staying up past 9.30 tonight. I tell you, it's all in your perspective.

Monday 2 December 2013

Day 83: "Look Good, Feel Better"

Today I went to a "Look Good, Feel Better" workshop, which is a free community service program dedicated to helping cancer patients manage the appearance-related side effects resulting from cancer treatment. I went up north on the peninsula to Mona Vale public hospital (opposite direction from where I'm having my treatment)  at Gail's suggestion (she was impressed with Patsy, the group leader, and the morning tea). It was a lovely day so I put Errol's top down and enjoyed the drive.

There were 5 of us there, ranging in age from late-teens to 50s. There were 6 volunteers so we each had someone who worked with us individually. I learned more about make up today than I ever have before! It was a light-hearted affair with some very helpful tips (such as how to make your eyes loook relatively normal when your eyelashes fall out). I can't imagine that I'll make that much effort on a daily basis, but then again, being bald might make me change my tune.

I was disappointed that "the wig lady" didn't make it as I was hoping for some scarf-tying tips and a look at some turbans. Patsy did her best to offer some ideas and tips which were great starting points.
The morning tea nearly made up for the missed presenter.

The very exciting part of the day was that I made it to the kids' school dance concert this evening. It wasn't the same without the smuggled wine and snacks, but I was still very pleased to have been able to participate.

Sunday 1 December 2013

Day 82: Overdone

I started the day feeling pretty good and was even excited to have half a coffee. In retrospect I can say that I felt like I was somewhat in a different dimension. Despite that, I am fairly annoyed that 3 hours on the beach watching kids and socialising at Nippers (I only just managed a dip myself and did stay mostly sun-sensibly covered up in long-sleeves and a hat) left me feeling the need for a rest. Add to that a lovely 2 hour visit and lunch from some friends and I was wiped out for the rest of the day.

It appears that I do need to scale back my activities and expectations. Hopefully my energy will increase in the coming 2 weeks as I'm thinking that it's really bizarre to be going to bed earlier than many of my friends' kids. I'll stop my complaining and be happy if this is as bad as it gets (as my tongue is feeling a bit funny...).