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  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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Taxol, Tests, and tumour markers

I have just finished my first cycle of Taxol, 3 weekly infusions.  We are getting our heads around the side-effects schedule and are starting to know what are my ‘good days’ and what are my days that I really just need to curl up in bed for the day. So far it goes as follows chemo day is pretty good with all the premeds they give you. Following day I get a flushed face and feel a little out of sorts but not actually too bad. , next 3 days nausea, tiredness, headaches, cold and clammy episodes then the 2 days preceding the next chemo I feel fine again.   Dr H thinks the cold clammy spells are caused by my liver releasing toxins into my blood stream hopefully from the tumours breaking down. My liver function tests show one liver function elevated but the others fairly normal.

One of the biggest problems with the side effects of Taxol is that it affects the side effects of morphine.

Warning: One for the TMI files:

One of the side effects of morphine is constipation.  To keep myself regular, I have had to take medication with a laxative affect.  However one of the side effects of Taxol is diarrhea so we are playing a very delicate balancing act between the two extremes,  trying to not to overmedicate in either direction. but needing to occcasionally give it a gentle nudge.  Such fun!!

Now on to the tests and tumour markers part of this blog post.  I mentioned in this post about my tumour markers.  Until the beginning of this year my tumour markers, CA 15-3 for those of you in the know, have always been on the low side. They have been under 100 even with me going metastatic and I have realised in the last couple of weeks how much that reassured me things weren’t too bad.  They jumped to 155 (26th January) and thats when they decided to scan in February and since then they jumped to 190 (9th February) and in the month I was off chemo they jumped again to 299 (6th March)  fairly linear progression of about 20-25 points a week, so far so good.

When I saw Dr H on Wednesday my tumour marker had jumped to 689 (29 March) – Yikes!!  This could be for several reasons.  Firstly they have bought in a more accurate way of testing it, which could either mean that this is a more realistic reading (or possibly that a technician has made a mistake with this new testing method).  The other two explanations are that it is an ‘over-reaction’ of the tumours to the new chemo ( this would be good news as there is a possibility that it might have long term control and shrinkage of the tumours).  or that the tumours is growing bigger and more aggressively and that the taxol isnt having any effect on it.  The next tumour marker test result will be more truly indicative on what is really going on.  If it has dropped or stayed it means the taxol probably is having an effect.  This will be backed up by a CT scan I will have by the 1st of May which will show what is actually going on. So until then I am trying not to stress too much.

Deep breaths…. deep breaths…deep breaths…

 

 

 

 

 

 

 

A little rant

Just something that has been bugging me a little lately.  I have had the reaction from some people that because I am getting involved in hospice and I’m on morphine I am ‘giving up’.

They think I should hold on to hope that I am going to be cured and that to do anything else is being negative.

I dont believe ‘positive thoughts’ cure cancer. I do believe positive but realistic thoughts help you fight cancer by putting your body in a less stressed state, and depending on the aggressiveness, stage and biology of your cancer you will be able to at least knock it back and in a lot of cases achieve remission or cure.

I will have been dealing with ‘Gertrude’ for 4 years this coming August.  I honestly believe that if I was going to be cured of ‘Gertrude’ it would have happened by now.

We dont have the money or the time to try unproven and expensive alternative therapies and being a girl with a science background I need to have the things I try backed up by science.  We have chosen not to spend $5000 dollars amonth for tykerb which is not publically funded in New Zealand because there was no guarantee that it would work at this stage of the proceedings and if we were spending that sort of money we would have no life (we would have had to eat only the the most budget unhealthy foods, no trips to the beach to recharge my spiritual batteries etc, no uni studies, no helping to pay for OD’s wedding) it might have kept me alive  a little longer but would it be a life worth living?

I still hold out a small amount of hope for a spontaneous miraculous remission but also believe at this stage it would be exactly that – miraculous.

That does not mean I am giving up, if I was giving up I wouldn’t be trying taxol, I wouldnt be carrying on with my uni studies and staying active and involved in all the other things I can manage to do.

By getting involved with hospice, looking at funeral planning, to me is just a natural way of getting organised.  We need to have things in place especially around YD and I relax more myself knowing things are organised. It is all about lowering my stress levels and allowing myself to enjoy whatever time I have got left be it  6 months, 2 years or whatever.  I can make the plans, get organised then relax knowing they are already in place.

I have a friend that should be on morphine because the amount of pain she is in but she cant get passed that psychological barrier that it has around it .  I take less morphine than I could because I prefer to feel a little pain and be able to gauge when it is getting better and worse and not feel too doped out.  Taking the level I do allows me to function and live a reasonably normal life go to uni etc.  Compared to my friend that at one stage was in so much pain she admitted she couldnt think straight.

I think what really annoys me is that people buy into the rah-rah survior myth so much that whether you are a cancer patient or part of their support system, friends and family, there is a barrier to being realisitic.

Someone who said their friend with mets wasnt giving up and was going to fight it with everything they’ve got when I said about where I was – what do you think I have been doing for more than the last 3 and a half years .  Or someone who said  to my face ‘dont give up, you have got to believe the chemo will cure you. dont believe what the drs tell you.’  I’ve done my own research and I have also had friends with exactly the same thing as me, I know that at this stage it is not cure it is control.

By denying that I will probably die from this is not helpful to me, it is denying me the right to face my own reality and make peace with it the best way I know how.

Busy schedule then disruption

This is what I wrote on my ‘Get out Gertrude’ Facebook page 2 weeks ago:

“running out of time to do blog posts at the moment – I know I should be taking it easy starting new chemo but since we got back from our second mini break my week has looked like this… Monday: up to Cancer Society to do 2 hour relaxation course, came home had nap, visit from my sister.  Tuesday: ECG and onc appt to get go ahead for chemo, Wednesday: Chemo Thursday: theoritically a stay at home and rest day but had visits from Cancer society liaison nurse , phone calls from the hospital and a vist from my friend Jayne.  tomorrow (Friday): we have meeting with a lawyer to redo our wills, and then back up to the hospital for a pre-admit visit to discuss putting new portacath in as I am running out useable veins for chemo etc. Saturday: I have a planning day for my committee work with Breast Cancer Aotearoa Coalition. This will just be sitting & talking so I think I can manage it.  Sunday may be an actual rest day!!! Monday: will either be relaxation course then portacath op or just portacath op depending on when they schedule it.   Wont find out til after preadmit visit tomorrow.  Tuesday: going to uni for the one paper I am sitting this semester.  Wednesday: Chemo, Thursday: hopefully a rest day, Friday: meeting with family support services (hospice) to talk more about what to put in place for YD somewhere in there I may fit in a short blog post but I cant guarantee to find the time”
then this happened:
“I had  a bit less routine outcome to my port insertion yesterday.  I had a touch of acid reflux during the operation (under general anaesthetic) and some went into my lung.  I was kept in overnight and until my oxygen saturation stabilised. they also have me on antibiotics to make sure if there is any damage to my lungs it doesnt get infected.  They say it should rectify itself over the next few days but I have to take things easy.  Still have to go back to hospital tomorrow for chemo – feel I’ve been living there most days the last two weeks but at least now my chemos will be easier and they wont be trying 6 times to find a workable vein”
Because of the irritation in my lung I had quite a cough when I went to chemo last Wednesday so I had to go and get the all clear from my old friends, the doctors at Acute Oncology, before chemo could proceed.
My Friday meeting with the hospice family support service went well and I feel like we are getting things in place for YD.
I dont whether it was the combination of high strength antibiotics and the chemo but by last weekend I felt absolutely shattered.  I had intermittent headaches and cold clammy sweats and slept most of Saturday and Sunday.  Sunday also bought the delights of vomitting and diarrhea.  We narrowly missed having to go to the hospital to get them to check me out.
By Monday I was coming right and on Tuesday I felt almost normal and managed to go to my university class and have a really good day. And then of course Chemo rolled around again on Wedenesday.  – I have managed to get this changed to Thursdays from next week on as it suits my pool of ‘chemo chaffeurs’ better.
Yesterday (Thursday) should have been a rest day but I had made the mistake of not taking my pain meds refill in and as the initial prescription was filled at the hospital pharmacy I have to get the refills there. so I took myself up on the train to get them.  From the next prescription I will fill them at our local pharmacy as this is the second time I have forgot and it is just too far to go just to get meds.  Unfortunately they will only give me 10 days worth at a time.
Today although I can feel the chemo side effects kicking in a bit of nausea, a lot of fatigue etc, but by setting my laptop up on my bed I have been able to catch up on blog posts and other correspondence and still have enough energy to go out with OH to a work function tonight.

A break away

the mouth to Tutukaka harbour

The week before I started Chemo – we managed to get away again to one of my favourite places  for rest and relaxation.  What I love about this place is that where ever you are you have gorgeous views to look at

Even when I was having a nap upstairs I could look out and see the water

view from upstairs

or while I am having lunch

view from downstairs

 

and then when I have enough energy I can walk down the steps on the  harbour side of the motel  to this gorgeous beach

and have a little swim and snorkel