Day 61: What would I do if I knew?

I find myself again wondering "What would I do if I knew that I were going do die on xx date"? Don't worry, I'm not coming at this from a morbid angle. I know that in 17 days from now, on November 26th, I'm going to start my 18 weeks of 6 cycles of chemo. I have a strong suspicion that, while my life is unlikely to end, it's quality is going to decrease somewhat.

So what am I doing with that knowledge? Going to try to improve something in the world? No. Trying to get caught up in my admin? A bit.  Setting things up for my kids and my family? As much as possible. But what am I really doing with the time?? Trying to fit in all the social events that would normally happen between now and the end of the year! And I am totally exhausted (hence no posts for the past few days). So now you know that I am still the same.

I slept on and off on Thursday night but had no more sickness. Perhaps the contrast drink. In any case, my tummy was tender all Friday. I made a valiant effort to drink and eat at Nick's work Xmas party but I ended up on water and was very disappointed in myself. The party was the best yet since 2003: the cafe at the zoo had great views, the zoo keepers bringing the 4 year old crocodile and big snake around for petting were great, Amber's decorations and music were perfect and Nick and Sonny did their best speeches to date. I enjoyed it but wasn't quite festive.

Saturday's swim club saw Remie nail her 25 m freestyle and Alex swim his first IM ever. Lunch at Sue and Jono's was great fun. Pity Fred slept through t but hope he's on the mend. I was proud to have managed to sneak in the birthday cake unbeknownst to Sue.

Dinner at Ormeggio with our ante-natal mates was entertaining as usual. I texted beforehand to warn them of my tattoos and had a great time as they tried to work out what I'd had done. I managed to rise to the festivities, partaking in the degustation menu with matching wines. Roz swooned over the chef, Allessandro, while Deb took photographic evidence that she had indeed met him. Hilarious.

Today was a much needed mellow day. The boys took off for a Cubs "flying day" (but the Cessna flights sadly didn't happen due to poor weather) and Remie and I stayed in bed until an unheard of 8a (I now get why loads of parents love TV: she watched Octonauts episodes on my iPad while I dozed). We had great mummy/Remie time (which even involved sorting out the toys in her room).

Now it's time to sleep and rejuvenate. I realised last night that I'm likely to lose my hair in about 4 weeks. That's depressing when I'm tired. So what am i doing with that knowledge? I'm going wig shopping with Remie and some of my friends on Thursday; I'm thinking of exploring a short red bob. I figure I have to look at it as an opportunity to play around with my image to make it entertaining. After all, it is only temporary.

Day 58: Final pre-chemo scans. And possible flu.

I just got my first sense of what I'm in for starting in 19 days and I don't like it. I know that I've mostly had a walk in the park so far and I wasn't prepared for any complications. At least not yet.

 I was at the hospital most of the day for my heart scan (as one of the meds in my triple cocktail that goes for 3 cycles can waken the heart muscle) and my brain, chest and abdomen scan with the bonus addition of a quick look at my squeaky titanium and ceramic hip to make sure it hasn't cracked (!).  I had 2 injections for the heart scan and 1 for the full body scan. As my injections have to be done in my right arm forever more since, w/o 24 lymph nodes in my left armpit, I'm now prone to lymphoedema, my right inner elbow is a bit tender. I also had to drink a special "barium something" drink at 20 minute intervals for the hour prior to the scan. I was happy to have Nick there for the hour and a half between the two (he'd just flown in from Singapore at 9a and swung by en route to work) for a debrief and wonderfully distracting company.

On my way home I had a yummy high tea lunch with Sue LP. It was a lovely treat after the scans and a great catch up. I sailed through the rest of the afternoon routine of after school swimming and getting another lovely friend-provided dinner ready.

All was fine until about 5.15p when I felt like I'd been suddenly run down by a truck: nausea, a headache and chills came from nowhere! I passed kids' dinner duties on to Nick, sat outside with a spew bucket for a bit, had a little episode out the other end and tucked into Alex's bad while he read me 2 chapters of The Famous Five. I managed to get up and move to the couch for the news and a bit of inane tele (you know I must be unwell when I do that!). After another bottom incident at 8p, I headed up to bed. I was ready to jump in to bed after brushing my teeth, washing my face and tending to my eyebrows (man do they hurt) when I raced to the bathroom in just enough time to hurl into the toilet.  I can't remember the last time I had this. Ugh. I'm crossing my fingers that its a 24 hour thing  (or less) or maybe food poisoning as it's Nick's company Xmas party tomorrow night. I swear I'll seriously appreciate feeling well whenever I do.

Day 57: Awards, eyebrows and epilepsy

It was a very exciting morning as we knew Remie was going to receive her second merit awards of the year (all kids get 2 and her teacher fit hers in before I start chemo).  She stood up proudly on the stage of the K-2 assembly and received her award for "Enthusiastically approaching new things and being a great role model in class".  She may drive me nuts, but she is destined to make her mark on the world.

From that proud parent moment I went for my first ever tattoo. Yes, you read that correctly. I took some advice and had my eyebrows tattooed on. "Cosmetic tattooing", it is called. It also covers post- mastectomy nipples for those who weren't able to retain theirs. Jill was a fabulous woman with a great attitude (and boy did she look good as well). She inflicted much pain on me (ok, I think I am a wuss) and left me with dark caterpillars above my eyes (I am assured by many that they will fade - but unlikely before Nick's company Xmas party this Friday...). I am holding out hope that I made the right decision to prepare for the loss of my eyebrows as there is no way I would have done this otherwise.

I then raced to pick up Remie and take her to the doctor to get the results from her sleep study. Dr. Hugh greeted us and asked how we were. I told him about Remie's recent run of night terrors and sleepwalking as well as my diagnosis. He then ran me through the sleep results, which ruled out sleep apnea and shaky leg syndrome and did not suggest the need for removal of tonsils or adenoids. He said that her EEG (brain wave measurement) was abnormal and showed a "spike and ave" pattern characteristic of epilepsy, specifically benign focal childhood epilepsy. He said that night terrors and sleepwalking could be part of this and we could medicate if we so choose if this were indeed the diagnosis. He said this usually passes by puberty and rarely needs to be medicated unless it causes great disturbance. wrote a referral for a full EEG but wasn't too worried and said there was no urgency.

Just after 8p tonight Remie had a massive night terror, complete with sleepwalking and big jerking of her right leg and hip possibly consistent with a seizure. That's the emotional straw that broke the camel's back today. Thankfully tomorrow is another day. And thankfully my fridge runneth over courtesy of my wonderful friends. I don't know where I'd be without you.

Day 56: There's no such thing as an "all clear"

Yes, that was my "cancer 101" key learning module for the day. It makes perfect sense once explained but it's still big news. I now understand why, on Day 1, Dr. Karen told me that I was now on a life long cancer management plan.

Dr. Fran presented "Medical Oncology" at today's seminar series at The Mater. She explained what cancer is (rapidly growing cells that don't follow normal cellular development patterns), why people might get it (e.g. having children when over the age of 32 or having no kids at all and/or drinking alcohol amongst others), what can be done about it (treatment types) and what the longer term looks like.

She used the analogy of an airport metal detector to explain what she'd like to see as a "cancer detector".  She then reminded us that no such thing exists now, so there is no way of knowing whether any cancer cells are still alive in a patient once treatment is finished. Bone and body scans only report "problems" (tumours larger than 1 million cells); they don't pick up anything smaller. Heavy stuff.

Before the seminar I went to see Maggie, one of the hospital's physios, to talk about lymphoedema.  She was very helpful and informative and sent me away with a bunch of exercises and general thoughts. Useful, and another life long plan to manage.

Day 55: The web of women

I was getting ready to head to the gym at 7.15a after a bit of a lie-in when the doorbell rang. I opened it to find 2 packages. The first one Alex and I opened was from my Aunt Rita, my mum's youngest sister, with whom I haven't been in contact for well over 10 years. She sent me a beautiful "magic lap quilt" with special healing powers. I was so touched I cried.

The second was from my former neighbour and dear friend Laura who is now living back in the UK. In addition to sending two jars of traditional English sweets for the kids, she sourced a framed picture that says: "When life gives you lemons, grab tequila & salt".  I laughed and felt very supported.

The morning was rushed but quieted down after school drop off. Nick and I snuck away for a coffee to catch up before he left for Singapore this afternoon (did I mention that he finally made it back from the US yesterday morning after missing his flight and subsequently Alex's Cubs camp). He's trying to fit as much in as possible before I start chemo on the 26th. Bless him.

I then caught up with a woman I vaguely know from the gym. Gail finished her chemo 3 weeks ago and was happy to share and answer questions. She looked fabulous and had gone though chemo relatively easily. She was very positive, sharing practical tips and suggestions as well her experience. As we were wrapping up, the woman at the table leaned over to tell us she is a breast cancer survivor and wish us all the best for our respective next steps. Lovely.

I got home and booked an appointment to look for a wig, left a message for a woman re: eyebrow and eyelash tattoos and looked into the "Look good, feel better" program.  All I need to do now is get a few head covers.

I then  opened the little packages my mum sent via Nick. Not only did she send the practical items for mouth care (my dad suffered mouth issues when he went through chemo 8 years ago), she sent a breast cancer bracelet with a note telling me that I should wear it to my treatment and it will be like she is there holding my hand. I smiled and just wished I could give her a hug.

The day ended with Kylie dropping by with dinner. Seeing her smiling face made me happy.

I am yet again amazed at and thankful for this web of women who are helping to hold me up. I feel very lucky and loved.

Day 54: Lopsided

I went to the beach today in a normal bikini, with no padding or extra "filling out" assistance. I didn't want to hassle with my insert or lose it in the surf. I took my dress off and jumped into the waves while Remie didd Nippers. I felt strangely confident despite the unevenness, which is very noticeable to me but likely less so to others. I was more self-conscious of my muffin top and tree-trunk thighs. And all I can say is that my biggest issues are cosmetic and/or surgical, I'll be laughing. Odds are high that the challenges in 4 weeks will be bigger, but I can always remain cautiously hopeful yet pragmatic.

Day 52: Almost routine

I got to The Mater, my home away from home, a few minutes before I was due at Nuclear Medicine for my 8.30a injection required for my 11a bone scan. I'd left the kids in the capable hands of their yoga teacher who started Remie's session at 7.30a (While Alex did his homework) and then walked them to school.

After my injection I had a coffee at the cafe, did a few emails, then headed across the road to The Poche Centre to wait for my 9.45a appointment with Dr. Andrew. I found Kathy, who answered some questions I had regarding a reconstruction survey I was asked to do, had a quick chat and finished the survey. As I sat in the waiting room, one of the women from the seminar series came in and sat next to me.  She recognised me and reminded me of her name. We proceeded to talk for the 10 or so minutes until we were both called in. She was one of the 2women from Tuesday who had done the cold cap treatment and retained some hair. Her hair looked better than my first impression on Tuesday so perhaps I will give it some more thought.

Rebecca called me in and asked how I was. I told her very honestly that I am fabulous at the moment because I figure if I say it it might be true. She asked if I had any pain, to which I responded that I only had some mild discomfort. We discussed my head-shaving plans and I told her how Remie is educating her class. She was happy with her examination and suggested we add another 60ml to my expander. She got Dr. Andrew, who thought the whole thing was grand. He had a bit of a laugh when I mused that my hair was likely to come back grey as he is very grey. Why does it always look so good on men but not always so on women? We discussed the final result and he mentioned that there were other options besides implants. When I said I wasn't so keen to use my stomach muscles and risk a hernia, he tapped my stomach and mentioned we could use that. I will have to follow that up as im wondering if it could involve a non-elective tummy tuck ;-)

After the expansion, Rebecca asked me what my bra size was and what I wanted to be at the end of this process. Yes,she seriously asked me to pick my size. Unfortunately is was a no-brainier as I'm used to what I was and lingerie is expensive ;-)

After I finished there I went back across the road to Nuclear Medicine for my bone scan. As I was 20 minutes early, I managed to fit in my blood work before the scan. It was actually quite a relaxing hour lying down and having machines whir around me taking pictures. Now I just have to wait for the results and hope for the best.

The strangest part was that I totally know my way around the hospital and it seemed almost routine to be there. I wonder how I'm going to feel in 5 months after spending even more time there.