Along with the good news came a touch of bad.  My tumour markers which have always been low have shot up by 60 points from 91 to 155 in the last 3 weeks.  Dr H was very proactive and when he heard I hadn’t heard anything about my CT scan be scheduled – it was supposed to take place before my next oncologist assessment appointment on February 17th – he jumped on the phone to Middlemore and demanded they schedule it then and there while I was in the office.  so I have a CT next Wednesday at 10am.  He is away the following week and even thought he is unlikely to have the official report – he meets with the tumour review team on Thursday afternoon and will be able to access and discuss with the radiologists whether or not things have progressed further.  He only approved the Adriamycin chemo for today and next week and will let me know the new plan before he goes away.

The tumour markers combined with more pain over the last couple of weeks tend to make us believe that at best the tumours have not shrunk and stayed the same size but we think there has probably been progression/growth for them to jump that much.

We always knew Adriamycin was more of a stop gap measure that was unlikely to work for very long but I am disappointed that only after 3 cycles (9 weeks) it looks like it hasnt worked at all.  We are starting to run out of chemo options and I had hoped for a little longer on this one.

We should know more by the end of next week – I promise to do another blog post then

I have struggled to find balance.

I have been either too tired or too busy to write any blog updates.

The new chemo (Adriamycin) and pain medication has  been affecting me a lot more than the last two chemos, (vinorelbine and xeloda – oh not to forget the top up of herceptin) that I have had over the past two years, have and I have struggled finding a ‘new normal’, a new equilibrium where I can do the things I need and want to do without wearing myself out too much.

What have I been doing?

my column of our calendar for the last few weeks

I spent a day and a half in Christchurch for K’s Funeral, meeting up with CR and CM and spending the night with nieceB and nephew S and his lovely fiance J.

I have carried on with the ‘Cancer Wellfit’ programme.  My trainer was away for 3 weeks over Christmas but I kept up with the cardio part of the exercises on a Tuesday and a Thursday,  while this made me tired it also I think  conversely gave me a little more energy or ability to deal with being busy.

I have helped OD find her wedding dress and bridesmaid dresses

I have had blood tests every Wednesday and Chemo every Thursday.

I have spent a few moments catching up with friends.

I have indulged myself by having High tea at the Langham and Yum cha

high tea

I have helped C our French daughter acclimitise and helped her sort out her uni enrollment

I spent time with N (another exchange student) that was in New Zealand for a month. (and bought beads for my bead bracelets to commemorate their visits)

I have been to the beach once or twice

beautiful day at the beach

I have had a bone scan which required me to be in Auckland most of last Wednesday.

I have had a nap most afternoons.

and when I haven’t had a nap I have gone to bed early.

That has been my January 2012 up to now.

You will notice that I have changed the colour theme of the blog.  Someone told me they were finding the white writing hard to read so while keeping the purple background I made the posts themselves easier to read.

I have also added a Facebook like box and I have created a Facebook page called ‘Get out Gertrude’ where from now on I will be publishing the links to new blog posts but also putting updates when I have been too tired and or too busy like I have been lately to write full blown blog posts.  I dont want ‘ Gertrude’ taking over my Facebook profile and it also means you don’t need to be my FB friend (and be inundated by facebook games and the like) to interact with me there – the ‘Get out  Gertrude’ page is also a good place to ask questions etc.  If you press like either in the ‘Get out  Gertrude on facebook’ box on the left of the blog or press ’like’ on the ‘Get out Gertrude’ facebook page itself you will get any updates  that I do there.

As time goes on it will also possibly be the venue for me asking for help with chemo (or other treatment) chaffeurs or other help we might need.

Thank you all for keeping me company me on this journey, I hope this helps you all to keep up.

I saw Dr H on Wednesday and he decided to cut the dose by 20% from 50 mg to 40mg which will hopefully keep my counts a little more stable and closer to the 1 mark but he has also said that if they are stable and I am not feeling sick that he wants me to have chemo if my count is above 0.5 because I cant keep missing two in a row like I did over Christmas and New Year.  Usually the nurse specailist make the call but he has said in future if there is any doubt of whether or not to give me chemo with low blood counts it needs to be discussed with him and he will make the call.

Good news is my tumour markers have fallen slightly with the little I have had so we are hopeful that more consistent doses at 40mg will continue this downward trend at least for the moment.

Dr H has scheduled a CT scan for the middle of my next cycle (beginning of February) to see what is happening and he has also aksed for a bone scan to be done within the next month just to confirm the pain I am experiencing in my back is just all from the tumour pressing on nerves and no cancer in the ribs themselves.  Nothing showed up in the CT scan but it is not sensetive to smaller bone metastases so we are just doing a Bone Scan to confirm.

The new regime of 3 long release painkillers seem to be working well to make me comfortable most of the time, and my gym work is paying off with my blood pressure while never really high has to returned to its more normal and healthy (for me) reading of 120/80 so I am feeling pretty good about things at the moment.

We have a plan and its seems to be working so we will stick with it till  it doesn’t anymore

As I listened to her talk I couldn’t help but feel privileged and honoured that she had rung me to talk – We only got to know each other originally through Sweet Louise when she wrote a forum post asking if anyone else had Inflammatory Breast Cancer.  She had liver mets at diagnosis June 2010.

Like me, she wanted to be proactive in spreading awareness of IBC, and was very supportive of me setting up the Australasian IBC network with our other New Zealand and Australia ‘IBC sisters’.  We call each other ‘IBC sisters’ because we are part of a sisterhood none of us wanted to belong to, but we have that bond to support each other through shared experiences.

I put her in touch with other IBC sisters internationally too though our mailing lists and Facebook group

K and I spoke often, on the phone and through Facebook chat, and when she came up to Auckland in September, for some Rugby World Cup games, I got to meet her face to face for the first time.  She felt guilty that she hadn’t done more in the name of IBC awareness but her treatments made her too fatigued a lot of the time.

Ever since the phone call in December I have been waiting for another phone call, we had exchanged a couple of text messages when she felt up to it but she has been absent from Facebook, I knew it was  only a matter of time.  My niece B has been one of K’s home care nurses, and K gave her permission to keep me informed (without going into details and breaking patient confidentiality) Though our New Zealand IBC sisters in the Australian IBC network I had also put her in touch with another woman, C who also lives in Christchurch and C was able to pop in and see her on Christmas Eve. So between C and B I was kept informed.

B informed me on Tuesday night that K had started to deteriorate more rapidly and when I got a text from B yesterday morning, without even opening it, I knew what it would read.

C rung me last night and we grieved for K together.  And this is what the sisterhood is about.  K rung me on the 10th of December to talk because she knew as someone with IBC with liver mets I was not a total stranger to dealing with what she was going through – although not as far down the path as her – I have faced thoughts of my own mortality and made peace with what ever is going to happen so I could understand and support her in a different way a way that her family and friends, no matter how supportive, could not.

I am flying to Christchurch for K’s funeral and meeting up with C.  We are going to brainstorm how to carry on K’s desire for spreading IBC awareness the breadth and depth of New Zealand.  K’s family is also aware of that desire and want to help and are going to tell funeral goers how important it was to K and ask for their support too.  This will be part of K’s legacy.

Rest in Peace K, you were a gorgeous lady and I am glad to have been your friend and ‘sister’ on this journey.  And whatever I do in IBC support and awareness in New Zealand will be in memory of you.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 15,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 6 sold-out performances for that many people to see it.

Click here to see the complete report.

I have my next oncologist appointment on Wednesday so we will have to discuss where we go to from here.  Do we decrease the dose, carry on with the dose we have got and  hope the neutrophils behave themsleves enough for me to get adequate amounts of the chemo even if we have to miss the odd week or do we switch to the only other chemo I’ve got left to try.

I must admit it worries me a little that if I am not having chemo it is giving the tumours a chance to grow some more,  but hopefully if it is having that much of an effect on my blood count then it will still be knocking the tumours back as well.

My hair is taking longer to fall out than we expected but this week when I have been rubbed my head I have had a palmful of short hairs coming off. My buzz cut is looking very patchy.

my patchy scalp

But I have a variety of hats to cover it up with such as these turbans that I found in a young womens fashions store.  I’m obviously ‘on trend’ for Summer LOL

one of my trendy turbans

My face is looking a little rounder from the steroids causing water retention but other than that I’m quite happy with the way I look when I am out and about.  Having gone through hair loss before definitely makes it easier this time.

The upside of not having chemo for the last two weeks means I have felt a lot more well and energetic over the Christmas /New Year period.  I have had more energy to go out shopping with YD and C while YD was home for a few days for Christmas.  I travelled to the other side of Auckland to help MH (one of my uni friends) celebrate her 50th birthday on the 30th and celebrated my own 49th birthday with a lunch out with family on the 31st.  Apart from having to take my regular pain killers I have felt rather good.  And to a certain extent you ignore pain and discomfort if you are busy or having fun.

Today is the first day of 2012  – I am both excited and a little concerned about what the next year will bring me.  But I am already starting to plan my 5oth birthday party for 364 days time

Happy New Year Everyone!!

our Christmas tree

We had a smaller immediate family Christmas Day yesterday with OH, myself OD, MD, YD, OD’s R, MD’s boyfriend A, and our ‘French daughter’ (our AFS exchange student from 2006 ) C.  So our smaller family Christmas was bigger than it usually is. This included bacon sandwiches for breakfast and  a more formal sitdown dinner in the early afternoon.

We have an extended family get together this afternoon/ evening with Sis M and her family, R’s family, and Niece S’s in laws as well.  This is more informal, with everyone bringing some Christmas dinner leftovers and is a very relaxed time.

I could have dwelt on the fact that this year I am metastatic and we dont know how many more Christmases I have got but  C and another exchange student N both arrived on the 20th of December.  (N is staying with her host family but visiting us often – just the same as it was when she was here in 2006.) N dropped in to see us last evening as well to exchange presents.

With C and N arriving so close to Christmas – C is staying with us until the end of July 2012 – It has added a new dimension to our Christmas preparation and celebration and has been exciting for us all.  I have chosen to concentrate on these and the other more positive aspects of Christmas instead of feeling down at all.

YD is home for a few days over Christmas as well so we are fairly busy.

Although it is not necessarily good for my health, I did not have my chemo that was due on Thursday because my neutrophil and white blood cell count was too low.  But the upside of that was that I have not had to deal with the side effects – nausea and suchlike - for the Christmas period.  So it is quite a positive thing in my book

I hope everyone else has had a good Christmas too

‘Chemo chauffeurs’

With my chemo being weekly and if the Adriamycin works I will be on it till April so if any of my more local friends want to book a Thursday to keep me company at Auckland Hospital  – its only a very quick chemo takes about an hour or so and the appointments mean I’m at the hospital about 11, 11.30 – 1ish – let me know so I can add you to the roster of chemo chauffeurs.  We are all good until mid January at the moment, MD, OD, OH and JMJ have all had turns, and the girls and OH can take me if no other volunteers but just thought I would put it out there to see if anyone else wanted to volunteer. Ring or text me if you are interested.

Guess my Neutrophils

As the Adriamycin is another chemo like Taxotere and Vinorelbine that can affect my immune system I have to keep an eye on my neutrophil (new white blood cells) count.  Above 2 is normal (around 4 is usual) and if it drops below 1 I can’t have chemo.  With the past experience I have had I am getting pretty good at gauging what level I’m at but I realised just how good yesterday.  Since I’ve started Adriamycin my blood counts on a Wednesday before next chemo on Thursday have been 4.5 after the first chemo and 1.7 after the 2nd.  When talking to RI (Cancer Society Liaison Nurse) when she rang to check on me on Wednesday afternoon I said that I felt they were possibly a fraction lower than the week before from the way I was feeling and that I thought they would be about 1.5  – Official result yesterday: 1.49 – how good am I at gauging it???!!!

Other Chemo side-effects

As the toxicity builds the nausea and other side effects are becoming a little harder to ignore  – We are experimenting this cycle with adding another med to the mix and seeing how it goes. I have to take steroids the day of chemo and the 2 days following to counteract allergic reaction and they do tend to help with the other side effects.  I actually feel more fatigue, nausea etc Sunday Monday.  Afternoon naps have become my friends.  I am still doing my Cancer Wellfit gym program and I know that is helping keep my fitness levels up and helping me cope.

Hair today, gone tomorrow

I bit the bullet and got my hair shaved at my hairdressers on Tuesday, it is just starting to thin in patches and should be all gone by Christmas.  This time is way less traumatic than losing my long curly hair I had all my adult life was the first time, and I actually went by myself to the hairdressers on Tuesday.  As I was saying to A, the hairdresser, part of that was purely psychological.  I am in control of so little at the moment as far as ‘Gertrude’ and her spawn in my liver go, that this was one thing I could control and could decide when to shave my hair and go and have it done  by myself.  It was very empowering in a way.

the shaved heair look - its all the fashion

apolgies for the typo in  the pic caption it won’t let me edit it and change at the moment

one of my favourite hats

Judy and Susan and Natalie all have younger children and that breaks my heart a little for them and their children.  One thing I am grateful for is that I got to see my children grow to adulthood – I may not live long enough to meet all the grandchildren but I know that I have done my best to leave my girls well prepared to bring up their own children, and I am content with that.  Even YD is in a place and stage that I feel ok about it.

Reading about these women and/or having them in my life puts my own position in perspective and makes me more determined to make the most of every moment I have left.  When talking to LW last night I actually invited her to my 50th birthday party – still over a year away – late December 2012, and I am setting goals like that and ODs wedding June 2012 as  dates to still be around for.  Any of you that can make it  are invited to my 50th.

I will miss Judy who was the same age as me - she had a wicked sense of humour which shone through on her blog and facebook, and my thoughts at this time are with her family  – RIP Judy