Goodbye, and thanks for the memories...

Dear Internet,

Thank you for your continued interest in Just Another Cancer Blog.  This will be the last post to this blog.  Unfortunately Melissa did not have the opportunity to write this post, so I will do it on her behalf.

On the 20th of November, at 5:15 am, my beautiful wife took her last breath.  I will not outline her final hours, other to say that she was surrounded by love and is no longer in pain.  

She was admitted to Te Omanga Hospice on Tuesday (17th November) because her symptoms were becoming too difficult to manage at home.  The staff at the hospice were just fantastic.  They are such caring and compassionate people, and they made Melissa as comfortable as humanly possible.  My family's heartfelt thanks go out to these wonderful people. 

Yesterday (Wednesday the 25th of November) I had the privilege of joining about 180 other family and friends to farewell Melissa at her funeral.  It was a celebration that I think Melissa would have enjoyed (she planned it beginning to end).  There were many tears shed, but also plenty of laughs and smiles as people remembered a special person who touched many lives.  After the funeral, quite a number of us raised a glass to Melissa's memory and remembered the many, many great times.  Yesterday cemented in my mind how many people loved Melissa, and how many lives she touched in her 37 short years.

I will leave you with one of the poems she asked to be read at the service:

I'm free

Don't grieve for me, for now I'm free,
I'm following the path laid for me.

I could not stay another day,
To laugh, to love, to work, to play.
Tasks left undone must stay that way,
I've found that peace at the close of the day.

If my parting has left a void,
Then fill it with remembered joy.
A friendship shared, a laugh, a kiss,
Ah yes, these things I too will miss.

Be not burdened with times of sorrow,
I wish you the sunshine of tomorrow.
My Life's been full, I savoured much,
Good friends, good times, a loved one's touch,

Perhaps my time seemed all too brief,
Don't lengthen it now with undue grief.

Goodbye, my love.  I love you, as do many, many others.  You will be missed.  Rest in peace xxx.

7 weeks later

So it's now been 7 weeks since I last posted on this site during which time its fair to say that I have recovered well from the surgery. My abdominal wound has healed up quite nicely and I am able to eat pretty much anything I like.

Having said that, during the weeks following surgery I did not feel like eating much at all so I was getting by on three very small forced meals and a couple of Fortisips (meal replacement drinks) a day. During this time I had my first contact with Te Omanga Hospice who have now taken over the majority of my care. The first consult was at home with a palliative care doctor and nurse who checked me over and outlined (much to my surprise) that I did not need to be worrying about forcing food in as people with late stage cancer do not take on the nutritional benefit of food the same way healthy people do. So their advice was to eat only if I felt like it, and then only what I wanted to eat. So eat for enjoyment rather than nutrition. Weird.

About this time I half-heartedly went to see my Oncologist to have some more chemotherapy (Irinotecan). I was struggling enough at this time with the thought of less good days as I wasn't having many of those at all and said I would only agree to more chemo if I could be convinced that it would do more good than harm. The result of this conversation was that I once again chose not to have any more chemo as it would certainly mean more time in hospital and less good days.

Each week a Hospice nurse comes and visits me at home, and as needed, I go and see a doctor at the Hospice. They take care of all my scripts etc and their main goal is to keep me as comfortable as possible for as long as possible at home. Surprisingly there is very little residential care offered, but its there as and when the time comes. And that may end up coming in the form of a few days in and out to solve a certain problem such as pain management etc and not necessarily full time residential care.

Since then I have also seen one of their Occupational Therapists who has provided a massive lazy boy chair, a walking stick (ehm) and shower rail, and a Touch Therapist who is trying to assist with moving some of the fluid still being retained in my legs. Starting to feel that my poor old body is shutting down. This week we will be taking the children along to an Art Therapy session (much to Paige's delight and Zach's contempt) but will be interesting to see how that goes.

One of the strange things that has been happening is that following a 10kg weight loss (assumed to be all fluid) that I experienced upon discharge from hospital I am now accumulating fluid around my abdomen and legs and gaining weight as a result. The Hospice doc referred me into Wellington Hospital last week for an ultrasound and to see if they could drain any of the fluid from around my abdomen but in the end there wasn't much there at all to be drained so it was not required. Other symptoms thought to be related to the fluid build up in my torso was loss of appetite and shortness of breath. Since these are seemingly not related to fluid build up, no one is really sure what is happening.

We do know my liver is much bigger than it should be, and that's all part of the parcel at this stage. I am back on low dose steroids now which is helping with an increase in appetite and energy meaning I no longer feel the need for an afternoon nap every day. This is great news by me as I felt I was spending far too much time in bed and when I was up I was shattered. Small mercies.

I will continue to check back in as I am able, but at this stage we are definately taking things one day at a time. It's a scary position to be in and there is absolutely no certainty about anything at the moment.

"and then something dramatic might happen"

At the end of April when I decided not to have any further treatment my Oncologist suggested that I would trundle along for a period of time and then new symptoms would start to appear. She also warned that it was possible that "something dramatic might happen" along the way. It turns out this happened just 4 days after my last blog update.

My last post was written on 26th July. In the wee hours of 30th July I was rushed to hospital in extreme pain and ended up having emergency surgery on the 31st. It turned out to be a stomach ulcer that had perforated and resulted in stomach contents being leaked throughout my abdomen. Left untreated this would have been life-threatening. I spent the next two weeks in Wellington Hospital recovering and was nill-by-mouth until two days before I was discharged. On day 3 it looked like the surgical repair was failing and they promptly put in a PICC line and started me on TPN (intravenous food) so that I could get some nourishment to help with the healing. Things were touch and go for a few days as the surgeons watched and waited to see if the repair was going to take, and it was suggested that they would need to perhaps put in a stent, then this was downgraded to putting in a scope to see what was happening, then as the days passed things started looking up and no further intervention was required. On day 11 I had a CT scan with oral contrast to check whether there were any leaks in the repair and to everyone's relief, I was leak-free. Phew. Following that they slowly started me back on liquids, then two days later on solids.

I was discharged on Friday (almost a week ago) and I am still very slow and sore as I have a surgical wound pretty much the entire length of my abdomen that will take quite some time to heal. I am slowly feeling better each day and am optimistic I can recover fully from this and have a bit more time.

In other good news, I saw my Oncologist yesterday and after just one dose of Irinotecan (which was now a month ago) my CEA has fallen from 759 to 556 so it clearly had a impact. Once I am back on my feet it's likely I will have some more. I am amazed it worked so well given the odds of it working at all, and also given what I have been through in the last three weeks.

Desperate times call for desperate measures

Well, it looks like the rosy times are over. Bryan and I recently returned from a trip of a lifetime - two child free weeks holiday stopping off in Hawaii on our way to Canada in order to attend a good friends' wedding in Vancouver. When we booked the trip back in October 2014, we didn't know if we would actually get there as June 2015 seemed like such a long way down the track and we had so many hurdles to overcome with my health first. However, the week before we were due to go, we were given the all clear from my Oncologist, she loaded me up with steroids and some other back pocket medications and off we went. I was thrilled to be able to go, and even more thrilled that my health held out as well as it did while we were away. The steroids seemed to keep me in an almost permanent state of "up" and gave me the appetite to enjoy all the deliciousness we were surrounded by and we were delighted to be able to share our friends' special day with them as well as see the sights and enjoy the Canadian summer.

Upon our return, and coming back off the steroids, I started to get more and more tired again and with it, the loss of appetite returned. The days quickly got harder and harder so my Oncologist sent me for bloods and asked me to go and see her. The results were devastating. My CEA is now in the order of 700 and LDH (an indicator of cell death) is well up there, together indicating that my tumour growth has well and truly got going. She suggested we give chemo one last shot - starting immediately - in an attempt to slow down the cancer growth. So on Wednesday, I did what I had said I wouldn't do, and I had some more chemo, knowing the odds of it working are only in the order of 20%. But desperate times call for desperate measures and things are really starting to feel desperate.

I went to see my Oncologist last Wednesday feeling crappy, and came out feeling twice as crappy thanks to the chemo. I have been bed and couch bound since Tuesday last week, although managed to pick the kids up from school today and have been upright all day. I fear this is as good as things are going to get for me now, and the time is now upon us to have the most difficult conversation of our lives - to tell our beautiful little kiddies that Mum isn't going to be around much longer  :(

Trundling along

It's hard to believe it has been 8 weeks since I last updated my blog. The main reason for this is that there hasn't been a heck of a lot to report, and that's kinda good news given my current situation.

A few weeks ago I had a rough patch and ended up spending a couple of days in bed. I was extremely tired, began getting tumour pain, had an achy back and was beginning to feel that this was just how it was going to be from now on. My Oncologist sent me for weekly bloods, put me on a week of steroids and ordered another CT scan. After about a day on the steroids I began to feel much better and the tiredness eased a bit. My appetite had been pretty minimal and this picked up again. The next week was much better and I felt a huge sense of relief that things weren't so bad after all.

Since then things have been ok on the whole. More often than not I struggle with tiredness in the afternoons and evenings, and have a few niggles here and there but don't have too much to complain about.

I had the CT scan a couple of weeks ago and that showed that my three liver tumours have been growing slowly (perhaps even slower than expected) but there hasn't been any further spread. All good.

I am finding the concept of "no further treatment" an odd one to live with, at least mentally. Knowing that something is growing inside you that is going to kill you but doing nothing about it other than treating the symptoms feels very strange. I seem to flick between total acceptance (my usual state) into wee bursts of "argh surely there is something that can be done!?!" but these moments are fortunately short lived. I understand science enough to know that this is it, and acceptance is a much healthier and tolerable mental state than running around trying to solve an unsolvable problem. I trust my team of health professionals and trust that if there was anything that could be done, it would be.

Back to making the most of the good days and enjoying my kids, husband, friends and family for as long as I possibly can.

No further treatment

After the news that the Cetuximab had stopped working and following our week away, I had my 15th CT scan in 2.5 years and some more bloods. The CT results were good, in that the tumours have clearly shrunk since my CT in January and there has been no further spread. This means the Cetuximab definitely worked and I am in better shape now than I was 3.5 months ago.

That said, we discussed the remaining options with my Oncologist who said there was very little to be gained from trying Avastin with Irinotecan, as there is only a 5-10% chance it would work at all and if it did work then we would probably only see a drop in CEA for a few weeks before it started rising again. There is also an increasing amount of evidence suggesting that once you start on Avastin it is not a good idea to stop (even if it doesn't seem to be working). Add to that the damage chemo does to your insides (especially when you have had as much as I have), the side effects plus all those extra hospital appointments and this option did not seem like a viable one to me. This means the only option left is "no further treatment."

So what can we expect now? It is not easy to predict as my cancer has not behaved typically this far, but it is most likely that I will trundle along for a period of time and then new symptoms will start popping up. As they pop up they will be investigated and treated accordingly. 

My bloods showed that my CEA is still heading upwards but it is no longer relevant for me to report on the number, or even know myself for that matter, since we have opted for no further treatment and we can expect things will continue to deteriorate.

The best we can hope for now is a few months of respite before new symptoms start appearing. My life expectancy is now in the order of 6-9 months. The time has come to ride this thing out. 

Will keep you posted......

The plateau that wasn't

Oh how quickly things can change. After my last blog update where I reported that my CEA was still trending nicely downwards, I had two further decreases (52.5 after 7 doses and 51.9 after 8 doses), but given how small the decreases were we decided we were probably seeing the start of a plateau.

At this stage I was feeling quite anxious as I had never experienced a plateau - in the past my CEA would either be going down (while on treatment) or up (when not on treatment). The key difference this time was that I was still going to be on treatment so I was hopeful that I might have a few more weeks (or months) of stability. I decided that if things remained stable (a little bit up and down would be ok) for say, another 3 or 4 weeks, then I might be able to trust it more. Deep down, however, I was expecting it to shoot straight back up.

A week later I experienced my first increase since being on Cetuximab (53.7) and a week after that it had jumped to 78.3. Bugger. No plateau. No point continuing with Cetuximab. My anxiety was justified.

So the question on everyone's lips is "what's next?" From what I understand there are only two options. I can try another expensive drug (Avastin) in combination with a chemo drug that I have had before (Irinotecan), accepting that the odds of it working are only in the order of 10% and dealing with a new range of side effects (and revisiting some old ones such as hair loss and neutropenia), or I can decide enough is enough and try to enjoy the time I have left without the endless hospital appointments and side effects. At this stage I am undecided.

Next week we are having a family trip down South for the second week of the school holidays and I am very much looking forward to catching up with friends and family and hopefully having some time out from the big decisions. Upon our return I will have a CT scan and a few more discussions with my Oncologists and go from there.

Until next time.......

The good news keeps coming

I have now had 7 doses of Cetuximab and much to my relief and delight, my CEA is continuing to drop. After the first dose it had dropped from 265 to 211, then to 132, then 97, then 82 after 4 doses, and as of Monday this week (a week after my 6^th dose) my CEA was just 56.5. 

The plan is to keep going with the weekly doses of Cetuximab until my CEA plateaus and then do a CT scan to see how things are looking. The CT results would then be used as a baseline for monitoring how long things remain stable after that (and we would still continue on weekly doses until the tumours started growing again).

The other good news is that the only side effects I seem to be experiencing are related to my skin. I seem to be on top of the acne-like rash now and am experiencing extremely dry skin on my face and neck, however this is also largely manageable and a small price to pay for the excellent results we are seeing.

I continue to be relieved that Cetuximab does not make me feel unwell, infact I have been feeling so good lately that I have joined the gym and have been doing BodyBalance (a mix of yoga/pilates/tai chi) twice a week and a gentle cardio workout once a week. Who would have thought? Long may it continue......

Cetuximab 2 and 3 (and some good news!)

Well, the first news following my last update is that yes, I got the acne-like rash :( However my doctor thought this was probably a good sign as it is often a sign that the drug is working. The other good news is that so far it seems to be limited to my face (bad enough I know) but good that it isn't also all over my chest and back. I have spent most of the last two weeks feeling like it zitty teenager, and reading up about it as much as I can to try and improve it. In the last two days I have noticed significant improvement, so fingers crossed I have seen the worst of it.....but who knows.

And the big news of the week is that my bloods are strongly indicating that the drug is not only working to stabilise the disease, but may also be shrinking my tumours! For those who have been following the rise and fall of my CEA levels (for those new to this, CEA is a marker in the blood that can indicate tumour growth and shrinkage in people with bowel cancer. Most people without bowel cancer have this in the range of 0-3 however if you do have bowel cancer its not the number that matters so much as whether your number is going up or down) my CEA hit the highest levels I have seen (265) on the day I started on Cetuximab, and this fell to 211 a week after my first dose and to 132 a week after the second dose. So it looks like the drug is not only holding things steady but possibly shrinking the tumours. My Oncologist said he has never seen these kinds of results (ie an indication of such dramatic tumour shrinkage) on this drug so its all a bit exciting, and long may it continue.

Of course, blood markers are just one way of getting an idea what is happening and we would get a more definitive answer by doing a CT scan, however at this stage it probably wouldn't change my treatment plan so not worth the hassle and expense. So the current plan is to keep going with the Cetuximab and continue to closely monitor my bloods and symptoms and when things do start to plateau, we would do a CT scan at that stage to confirm where things are at.

Anyway, at this stage this is the best news we could have possibly got. I had my third dose yesterday and hope to see a continuation in the downward trend in my CEA next week.

As always, I will keep you posted!

Cetuximab 1

On Monday this week I had my first dose of Cetuximab in Palmerston North. My oncologist had told me that it probably wouldn't make me feel sick, although I was still quite apprehensive after reading up on the huge list of potential side effects. The good news (much to my relief) is that the drug went in, and I felt fine! And the next day was no different. After going through 21 rounds of chemo it was very odd to watch a bag of IV medication go in, and not feel even the slightest bit queasy. Phew!

As this is a weekly treatment, dose two will follow quickly behind dose one, however knowing that I am not going to be out of action for several days following each dose is quite comforting. The worst side effect I can expect now is an all-over acne-like rash and of course, only time will tell.

Unfortunately this drug comes with a huge price tag as it is not currently government funded. When we realised just how huge the bill was going to be (and so quickly on the back of paying for SIRT), we somewhat reluctantly took our friend Mikaela up on her offer of setting up a givealittle page for us. Part of the reason for our reluctance is that this drug will not change the outcome for me, it will only prolong things for a bit (if it works at all). 

The site (http://givealittle.co.nz/cause/moretimeformelissa) went live just one week ago and the response has been completely overwhelming. As of today, a little over $23,000 has been raised by 215 donors. The generosity of family, friends, friends of friends and even strangers has meant that the first 2-3 months of treatment will be taken care of. When the page was set up we set a target of $20,000 thinking it was going to be unachievable. We have been completely blown away by the response and words don't seem enough to express our gratitude. At this stage it is unclear how long I am going to be on the drug however knowing the first couple of months is covered is a huge weight off our minds. 

The plan now is to continue the weekly doses for about a month with close monitoring of my blood markers (and any symptoms) and hope to see things stabilise a bit. If they do, we continue for as long as things remain stable.

I will keep you posted.......

SIRT part 2

As you may have gathered, the six week follow up from my SIRT treatment was some time ago and once again we have had a series of ups and downs which I can only now bring myself to share.

At the six week post-SIRT mark we got very good news indeed. The SIRT was successful in that it shrunk my tumours and sent my CEA plummeting from 176 to 30. We were very pleased with this result as it is apparently uncommon for SIRT to actually shrink tumours, it is more likely to change the cell density and hold the disease stable for an average of 5 months. So at this point we took the good news, celebrated a little and held our breaths for what we hoped would be at least 5 or 6 months of stable disease.

However this was very short lived, as just four weeks later my CEA was back up to 53 indicating tumour growth once more. So even though the average is 5 months of stable disease, it looks like I got about 2 months (I guess that's the bugger about averages), and most of that was recovering from the SIRT which was a challenge in itself.

We got the news of the rising CEA just days before our daughter turned 5 and started school. It was a bitter sweet time as I had been told in November 2012 that I had about 2 years to live so may not have been around to see my daughter start school. Her first day was a huge milestone for all of us, and I was grateful that I could be there to share it with her and be at least outwardly "healthy."

We took a two week holiday over Christmas and went down South to catch up with family and friends and enjoyed some Central Otago wine, good food and sunshine. Upon our return I went for another CT and had more bloods taken and this confirmed what we dreaded but expected, and that is that the tumours are once again growing, and my CEA was back up to 140.

Time to take my last treatment option for a spin.

The current plan is to start on Cetuximab (a non-funded targeted drug therapy) on the 26th Jan. It is a weekly treatment and will mean a weekly trip to Palmerston North to have it. We should know within 3 or 4 weeks whether or not it is working, but once again, it is not expected to shrink the tumours, just to hold them steady, once again for an average of 4-5 months.

I will keep you posted......

SIRT part 1

As I outlined in my last post, I decided to proceed with SIRT (Selective Internal Radiation Therapy) as my tumours appeared to be confined to my liver (making me a good candidate) and I am down to my last two treatment options.

The first step to having SIRT was to have a hepatic angiogram so the docs could check that the radioactive goo they planned to pump in was going to end up in the right spot and there wasn’t going to be any leakage into other organs. It involved having a series of catheters put through an incision in an artery in my groin, and threaded all the way up to my liver. Contrast was administered via the catheters as was a small amount of radioactive marker. Scans were then done to see where the contrast and markers went. I hardly felt a thing (thanks to the sedatives and IV pain relief) and the markers were taken up by my liver tumours which boded well for a good outcome from the SIRT treatment.

I went back three weeks later for the “live run” of the procedure, and even though the procedure was the same, I was not expecting the pain and nausea that came with it. About half way through the procedure I started to get really bad back pain, and this increased and persisted for about 12 hours (even with IV pain relief). It was exacerbated by the fact I was not allowed to move my right hip or leg for about 6 hours after the procedure in order for the arterial bleeding to stop. The pain moved from my back into my liver and the medical staff were unable to get on top of the pain. I couldn't hold food down for two days and was so whacked I pretty much slept (albeit it off and on) for the first 3 or 4 days. Once I had got my pain under control with regular pain meds things started to improve but it took about 3 weeks to come off the regular meds. I have continued to experience breakthrough pain off and on, which usually lasts for about 2 or 3 days before it settles down again. My energy levels are still not fantastic, but I have been enjoying the break from regular treatment and appointments.

I am still waiting on my 6 week follow up to see what impact the SIRT has had. Here’s hoping for a good outcome……….

When chemotherapy stops working

Almost two months ago when I last blogged I was two rounds through what was supposed to be 8 rounds of Xelox. However after just three rounds I had to call it quits. During my three rounds of Xelox my CEA steadily rose, indicating that there was likely to be tumour growth rather than shrinkage. I ended up being admitted to hospital with severe pain a few days after round 3 which turned out to be due to some of the growing liver mets pressing on other organs. During that hospital stay they did a CT scan which confirmed that the Xelox was not working and the tumours were growing despite the chemo. This basically means that there is nothing more the public health system can offer me as I have now exhausted all the publicly funded treatment options for bowel cancer.

I was referred to a private oncologist in Palmerston North (there aren't any in Wellington) and he outlined that there are three options left to consider, each with their own hefty price tags. They are:
1. SIRT (Selective Internal Radiation Therapy)
2. Cetuximab (a targeted therapy)
3. Avastin (a targeted therapy)

Apparently Avastin isn’t really an option for me as based on how I have responded to treatment so far, there would only be about a 10% chance it would do anything. So, that leaves us with numbers 1 (SIRT) and 2 (Cetuximab). My current thinking is that we will do both. The plan would be to have SIRT (soon), then wait and see if it does anything and be closely monitored until things start growing again. When they do, we would start on Cetuximab which is weekly in Palmerston North. It would only take an hour and it wouldn’t make me sick (hurray!). They usually give it in combination with some of the other chemo drugs I have had, however the doc I saw in Palmerston North said that I was clearly “chemo resistant” now given that a) my cancer continued to grow despite being on Xelox and b) I didn’t have a huge response to Folfiri and the cancer started growing back very soon after I stopped having it. Even though I am KRAS and NRAS wild-type, there is still only a 33% chance Cetuximab will work, but we would know after about 4 weeks of treatment whether or not it was worth carrying on. 

Since I saw the doc in Palmerston North its been pretty full on. I had bloods done yesterday, a CT scan this morning and then I met with the Radiologist who does SIRT this afternoon. Based on my CT and bloods he has agreed to do it but it’s not quite as straight forward as I was hoping. The first step is to have an Angiogram where he threads a tube in through my arterial vein in my groin all the way up to my liver and pumps in some contrast to check that I am suitable to have the procedure and there isn’t going to be any leakage into other organs. Then there is about a two week wait until the results of that are through and they order, and receive, the radioactive goo that they need to do the SIRT. The SIRT involves a repeat of the angiogram procedure but they would pump in radioactive goo instead of contrast. It is usually a one-off procedure.

I am hoping to have the angiogram next week and the procedure the week of the 22^nd Sept. The doc said I can also expect to be really tired for about 4-6 weeks, but apart from that (and the risk of some really rare nasties happening) that should be about it. He said from clinical trials already published they know that SIRT works for about 66% of people who try it and it usually holds the cancer in a steady state (ie no growth) for about 3-5 months on average. 

Watch this space.........  

A long overdue update - 20 rounds down

Gosh, I can't believe I last posted an update in March and now it is July. Since my last update there have been a few more ups and downs, as one would expect, but things on the whole are pretty good at the moment so this provides the opportunity for me to sit here and ponder.

In terms of my treatment, I completed my 10th round of Folfiri back in March and was sent off on a closely monitored "chemo break" in the hope it would be longer than my last one which lasted 3.5 months. This allowed me a few weeks to recover some of my energy and get things as back to normal as possible at home and with the kids without the disruption of so many hospital appointments and feeling a bit yuck. We took the opportunity to take a family holiday to the Sunshine Coast in Australia and treated the kids to Australia Zoo, Seaworld, sunshine, beaches and lots of swimming. It was a lovely break from reality and on the whole my energy levels were such that I was able to keep up with the kids and enjoy the trip.

On our return I was due for a CT scan to see how things were going and unfortunately this showed that the cancer was growing back again and quite rapidly. It was mirrored by a rapidly rising CEA and the decision was made to start back on chemo ASAP (another try with Xelox (Oxaliplatin plus Capecitabine) on a 3 weekly cycle). Chemo break over in just 10 short weeks. The positives were that a) it still hadn't spread beyond my liver and b) Xelox worked well last time. The negatives were that a) Oxaliplatin is pretty nasty stuff and b) the more chemo you have the less likely it is to work. It occurred to me that even though my cancer has responded well to treatment so far, it also appears to grow quite rapidly in the absence of treatment and I am rapidly chewing through my treatment options.

I was gutted about the prospect of starting back on chemo so soon, although in retrospect it wasn't just the prospect of the chemo itself but of the huge disruption it causes to my family, friends and our routines. People naturally kept asking the same questions - what drugs this time, it worked last time for you didn't it so it'll be fine, how many rounds, how long for, what's next. The answers I was giving over and over were exactly the same as when I first started on chemo back in January 2013 so this added to the whole feeling of "here we go again." Shit.

So round 1 (again) was on 4th June and round 2 was last week. I had a brief hospital admission a week after round 1 with a fever which did not turn out to be serious, and I was delighted to see my neutrophils were holding up better than they did when I had Folfiri. I have now had 20 rounds of chemo in total and some of the side effects are getting harder to control. I am finding that I am wiped out for about a week but start coming right after that and on the whole am able to enjoy the other two weeks. I am due for another CT scan after round 3 to see whether or not its working, and if it is, then the plan is to continue to 8 rounds, but this will largely be driven by the toxicity and the dose of Oxaliplatin may have to be reduced or stopped earlier than that. What's next? Who knows. At the moment please don't ask as I am just trying to get through each round one at a time.

One of the pros of Xelox versus Folfiri is that I shouldn't lose my hair this time. It is growing back quite nicely and I even treated myself to a proper haircut a couple of weeks ago. I guess to the outside world it may look like I am getting better.

The pondering I have been doing lately relates to the question "what would you do if you were given x months/years to live?" It turns out, that for me, it is "carry on carrying on." But take stock and enjoy the good times, the simple pleasures and being alive. You certainly know what a good day feels like when you've had a run of bad ones. Just the other day I delighted in taking the short walk to my son's school to pick him up at 3pm, chatting with him on the way home, playing xbox with him upon our return. The next day I went on a preschool trip with my daughter and relaxed into it rather than being on edge the whole time about where we had to be and when. I enjoyed every moment. Prior to my diagnosis I would have probably still picked my son up from school and gone on the trip but I doubt I would have viewed them in the same way. It's about slowing down and enjoying the simple things more.

Four more rounds of FOLFIRI

Ok, now its starting to get harder.

Since my last update, I have had four more rounds of FOLFIRI and with each round, three jabs of GCSF (a growth hormone to stimulate white cell production to combat the immunosuppressive effect of chemo) and constant antibiotics. Add to that the myriad of anti-nausea drugs that I need to take with each round of chemo and my body is starting to tell me it has had enough. In the earlier rounds of chemo I was able to regain about 80-90% of my usual energy levels, just in time to be hit with the next round. The last couple of rounds have not been so kind and I went into round 9 feeling quite lethargic. It is the kind of tiredness where sleep does not seem to help and suddenly the day to day tasks all seem a bit too hard.

In mid Feb I had a CT scan to see how things were going. The good news was that there had been no more disease progression (phew) and the three tumours in my liver that were visible in December were still there but had shrunk a little. Overall my Oncologist was happy with this and so the current treatment plan is to have one more round of chemo (FOLFIRI round 10) and then have a chemo break until things start growing back again. I can't express at this point how relieved I am to have a break in sight as I am feeling utterly worn down at the moment, both emotionally and physically.

I don't recognise myself in the mirror anymore. Between the number 2 haircut, medication-related bloating, weight gain and huge dark circles under my eyes, its fair to say I no longer look like the person in my blog profile picture. I try not to care too much about how I look, but its just one more thing I feel I have lost through this whole awful journey.

Since my last update I also made the decision to finish up at work. I have always enjoyed working and prior to my diagnosis was very career driven. Of course that stopped the day I was diagnosed (strangely it was that sudden) but my desire to work in an area I was skilled in remained. I was fortunate enough to get a contract with the Ministry of Health and they were very flexible and understanding employers indeed. However it had got to the point with my illness that I felt I was unable to give them enough of my time or energy and felt that something had to give. The decision was made in late Jan and I finished up at the start of March and as it turned out the timing could not have been better as the timing co-coincided with my plummeting energy levels. It is a bit sad for me to think that my working life is probably over, although I still have a little hope that a time may come where I am in a position to pick up another small piece of work. At this stage it is hard to know how realistic that is as this whole process is so full of unknowns.

On a happier note, Bryan and I have planned quite a few trips this year so that we have lots to look forward to. The first big event is a two night trip to Auckland this weekend for the Bruno Mars concert, and the second, a week on the Sunshine Coast in May with the kids. If all goes to plan then our trip to Aussie will be 6 weeks into my chemo break so fingers crossed I will be feeling a bit better.

FOLFIRI rounds 3, 4 and 5

It's clearly been a while since I have blogged as I have just realised that I have had three rounds of chemo since my last update.

Round 3 was in late November and like round 2, I ended up in hospital with a neutropenic fever. I was admitted once more and given broad spectrum IV antibiotics and fluids, however after 3 days I still had a fever (which at its peak reached 39.5 deg) which tended to come on during the afternoon, every afternoon, and was accompanied by a wicked headache. After three days on the antibiotics and no improvement, the antibiotics were stopped. The doctors tested a few theories to try and locate the source of infection but to no avail. At this stage, from my point of view, the worst part of all was that it was my daughter's 4th birthday the next day and it was looking like I was not going to be able to get out of hospital to spend the day with her. I was gutted.

The good news is that once I told my medical team why I was so upset, they decided to let me out for the day so I could at least go to her birthday party and spend some of the day with her. It was then very odd (after being out for most of the day and feeling ok) to have to head back in that evening and sleep in hospital rather than sleeping in my own bed.

Two days later and still no improvement they sent me for a CT scan of my chest, abdomen & pelvis (my usual set) as well as a head CT. The results came back pretty quickly and showed that my head was clear (phew), my liver mets were slightly smaller than in my previous CT and there was no new disease. Great news. The other thing that showed up was that a little pool of fluid that had been there since I had my bowel surgery in Nov 2012 had increased in volume and it was thought that was the probable source of infection. I was put on a different set of IV antibiotics and over the next few days slowly started coming right. After 8 long days and nights in hospital, I was finally sent home. 

Round 4 was delayed a week due to the hospital admission, so it didn't happen until 18th Dec. In an attempt to prevent yet another hospitalisation I was put on long term prophylactic antibiotics and sent home with a jab of GCSF (a growth hormone that stimulates the bone marrow to produce more white cells) to give myself the day after chemo. The good news is that it did the trick, and I managed to stay out of hospital.

The other good news was that I got a three week break over Christmas/New Year rather than the usual two weeks (partly due to stat days and partly due to us going away for a few days). Round 5 was on 8th Jan and once again with the help of prophylactic antibiotics and self-administered jabs of GCSF I have remained in the comfort of my own home.

Round 6 of 8 is due next week, and here's hoping for another drama-free round. 

8 things having cancer has taught me

Adapted from http://www.huffingtonpost.com/annie-buckley/lessons-from-cancer_b_4248090.html

I recently read a Stranger’s blog post which was essentially the Top 12 things she had learned throughout her cancer journey. I found I really related to it so thought I would have a go at doing my own Top 10 list, but in the end I only came up with eight. Here they are:

1.       Don’t sweat the small stuff. When you are feeling really wound up about something, step back and ask yourself is it really that important? What would happen if this thing did or did not happen? Does it really matter?

2.       Nothing is as important as people. We cannot exist in a vacuum and we cannot live this life alone. 

3.       People are generally compassionate, vulnerable, complicated and, most of the time, trying to do the right thing. Give people (and yourself) a break.

4.       In the face of tragedy, no one thinks they know the right thing to say. And maybe they don't, but if you're the recipient, listen for what's helpful and let the rest go.

5.       One thing I have found over and over during this challenging time is that I am incredibly grateful for so many things. Take time to sit back and enjoy the world around you.

6.       Everybody is different and every illness has its own path. We can learn from statistics and data, but we can never know exactly what someone else is experiencing.

7.       It's possible, but not necessary, to cram a whole lot of things into one day. (I know from experience, and likely you do too.) But what if we all did a little bit less, a little bit better, and enjoyed it all a whole lot more?

8.       Get/have at least one of the following: income protection insurance, serious illness cover or life insurance. Although money is not the be all and end all, when you unexpectedly find yourself out of work, not having to worry about money can be a saving grace. If you can avoid adding financial woes to an already very stressful time then why wouldn’t you? And none of us think it is going to happen to us – I sure didn’t.

That’s it from me this week.Til next time.........

The week that was

Unfortunately since my last blog, I have had an eventful couple of weeks. The Sunday night following my last chemo round I ended up spending the night vomiting and woke the next morning with a 38 degree temperature. When undergoing chemotherapy, a 38 degree temperature is enough to cause a little panic amongst medical professionals as the chemo itself leads to a weakened immune system meaning that you do not have the ability to fight off infection the same way a well person can and things can go downhill pretty quickly. So this lead to a trip into Wellington Hospital ED and even though the waiting room was chocka-block I was seen within minutes of arriving at ED and was hooked up to IV antibiotics and fluids. After several hours I was transferred to the Cancer Ward and spent the next two nights there under close observation. I bounced back pretty quickly, and the worst part was probably that we quickly had to sort out alternative arrangements for the kids for school and preschool pick ups, drop offs, night time routines etc. Bryan and my parents managed to sort all that out, but it really does cause quite significant disruption to everyone's already busy lives that they could do without. Me on the other hand, just had to sit back, rest, and let others take care of me.

At this point I would like to take this opportunity to pass comment about the fantastic level of care I have received since diagnosis. My multi-disciplinary team (medical oncologists, radiation oncologists, surgeons, nurse specialists etc), have been outstanding, as has every other doctor, nurse and radiologist I have come across. Shame I can't say the same for the hospital food, but you can't win them all :o) One of the meals I had during my most recent stay was so bad that I regret not taking a pic of it and posting it to Facebook! All I will say is that runny scrambled eggs, lumpy yet runny mashed potatoes, mashed carrots and soggy cauliflower should NEVER be served together.

On the same day I became unwell, leading to the hospital admission, my hair started falling out. Initially it was quite similar to a change-of-season malt, but over the next couple of days the rate of hair loss accelerated so that by Tuesday it was coming out in small handfuls, and when I washed it later that morning I was getting large handfuls of wet hair coming out. By the end of my shower I gathered it up and put what looked like a small furry animal into the rubbish bin. That's when I decided I had had enough and it had to come off. So on Wednesday morning whilst still in hospital I asked the lovely Health Care Assistant (and resident hair cutter) to give me a #1. Lovely.

A week on, I am still shedding quite a bit of hair, but at least it is short so much less distressing than getting handfuls of long hairs, and at least its not clogging up our shower or vacuum cleaner. I am also aware that some people experience total body hair loss, so that may be coming. The upside will mean no more shaving my legs  :o)  the downside could be loss of eyebrows and eye lashes  :o( Time will tell.

As noted in an earlier blog, this hair loss was not totally unexpected, so I had been to see a "wig lady" a few weeks ago and purchased a lovely looking wig not dis-similar to my own hair at the time. The main difference being it has a few highlights and I figured it would save me big dollars at the hairdresser. For the first couple of days post head-shave I wore the wig in public, and then took it off when I got home as I was much more comfortable without it. When in public I felt like people were looking at me like "we know its a wig - you are not fooling anyone!" and on top of that, it felt like a toasty warm hat and the weather here had been (quite unusually) stinking hot. So I decided to ditch the wig. I figured if I was ok with it then why should I care what anyone else thought.

At first I was a bit worried about what my kids would say, but they both thought my new hair cut was so funny because I had a boys haircut. So we had a laugh and said silly Mum with a boys haircut. They also knew when I was wearing the wig that it was a wig and don't seem to care either way.

Since posting a photo of myself with my bald head on Facebook I have been inundated with compliments about how good I look, which I find quite comical as I never received that kind of attention when I had hair! Regardless, I understand people are just trying to be supportive and it gave me the courage to ditch the wig in public. I get a few odd looks when out and about but I figure people who know me will get used to it, and people I don't know don't matter.

The worst encounter I have had since going bald happened to be with, of all people, a cancer society volunteer (!) at the Cancer Day Ward yesterday when I was there for round 3 of FOLFIRI. The conversation went something like this:
HER "Ohhh your hair is growing back!"
ME (feeling a bit crook from the chemo so a little less patient than normal): "No, its actually falling out"
HER "Oh you should sort yourself out a wig"
ME "Um, yeah, I have a wig but I don't feel comfortable wearing it"
HER "Why is that? I'm sure you will get used to it! There are some really natural looking ones now."
ME "Yes, but I still don't want to wear the wig. It feels fake."
HER "Oh well, there are some head covers you can get from the cancer society that are actually pretty trendy"
ME (steam now coming out my ears, refraining from swearing at her as I am sure I know the hats she is talking about and I suspect her version of trendy and mine are quite different) "Mmmmm hmmm. I will look into it."
Thank goodness for her she took the hint and moved on at this point. I am not sure why, but she didn't seem to be able to grasp that I prefer to go natural. If I am comfortable with my GI Jane look (as one of the young registrars referred to it as) then I don't know why other people should have a problem with it. Rant over.

Lets's hope this round of chemo is less eventful than the last. Til next time......

The ups and downs of this roller coaster ride

Now that I have given a brief outline of the last 15 months, I thought the next step might be to delve into some of the nitty-gritty detail. This is a story about the highs and lows (and highs and lows) of my cancer journey so far and about how everything is relative.

Like any good story, it has a starting point, lets call this "normal." Life was just chugging along with its minor ups and downs, but to be fair, life was pretty good. Bryan was happy in his job as Acting Manager of a team of Analysts at MED, I had just started a new job (attempting to make the move from Government to the Private Sector) and our kids were happy and settled at their preschool. 

Obviously, the first blow was the initial diagnosis, however once we got our heads around that and into treatment and the mindset that this was only going to take a year and then "normal" could resume, we figured that everything was going to be ok.

The first phase of my treatment involved six weeks of radiotherapy which meant a 25km daily trip each way into Wellington Hospital. Initially I had a bit of a moan about this as we seemed to have a perfectly good hospital (Hutt Hospital) a mere 6 minutes from home. However, after talking to other regulars in the waiting room who had traveled much further than I had (as far North as Waikanae and Martinborough and as far South as Nelson) I stopped moaning and counted myself pretty lucky to live so close to Wellington Hospital. After all, this whole business of treating cancer is pretty expensive and specialised, and as a result there are only 6 cancer centres in NZ. 

On the surface radiotherapy didn't seem so bad. Treatment would usually only take about 20mins (if they were running on time) and all I had to do was lie still on a bed in the correct position for about 5mins. Done. On alternate days I would see either a nurse, a dietician or my Radiation Oncologist just to make sure things were tracking along ok. After the first 3-4 weeks things started taking a toll. My bowel was quite upset about being struck repeatedly by high energy beams and over time this led to extreme fatigue, nausea, loss of appetite and mild burns to my skin. I also had to deal with the fine balance between constipation and diarrohaea on a daily basis. The dieticians were set upon me as weight loss is apparently not a good thing during a course of radiotherapy as they need you to  be exactly the same size and shape for each dose so that the beams hit the same spot each time. Must say I was a bit bummed that they were so unhappy with a 2kg weight loss as I was personally stoked  :o)  All that aside, things were turning a little pear shaped towards the end which meant I needed to have a blood transfusion to bring my blood cell counts a little bit closer to normal. Following that I soldiered on, dragged myself over the finishing line and called that part one done. 

Good news followed, which seemed to make it all worthwhile, and that was that my primary tumour (which had been 8cm x 2.5cm at diagnosis) was "gone." There were no traces of it on MRI or PET, however on the advice of my surgeon and wider multi-disciplinary team, I proceeded with an Abdomino-perineal (AP) resection. 

So the high = radiation worked. The low = I still needed to have a large portion of my large bowel (including my rectum) removed and would now have a permanent colostomy bag.

Surgery followed in late November 2012. The high would have to have been waking up to the news that the surgery went well and they were happy they got good margins (ie clearance around the tumour site). Lab analysis in the days that followed also showed that there had been a couple of pockets of cancerous tissue near the primary site which were also removed, so surgery had been a good call. The low part was when I was told about the spread to my liver as this was not expected and I had a feeling I knew what that would mean for my prognosis.

The recovery from surgery was hard going. I was in hospital for 7 nights (which I hear isn't that long to be on the surgical ward but it felt like more than long enough to me) and recovery at home took about 6-8 weeks. I had a sore bottom for about 2 months, but was happy to be able to take myself off pain killers a couple of weeks before starting chemo as my preference is to be drug free as much as possible.

Just prior to starting chemotherapy I had another CT scan to establish a baseline or starting point to measure the impact of the upcoming chemotherapy. By this time (Jan 2013) the liver tumours had grown big enough to be seen on a CT scan and it showed that I now had multiple liver tumours (too many to count) and they were spread all throughout my liver. 

The first round of Xelox (Capecitabine plus Oxaliplatin) was horrific. I wasn't comfortable in bed, or sitting up, the room spun. I couldn't focus on the TV, or concentrate long enough to even read an email, let alone a book. When I caught a glimpse of the news I found it overwhelmingly distressing. My emotions were totally screwy. Each day went on far too long. Relief came in the form of sleeping pills, and then on about day 4 when my district nurse swapped the Metaclopromide out of my anti-nausea cocktail and added in Domperidone and Nozinan. With the new anti-nausea combo I was able to function again, and I really appreciated what a good day felt like after that. Thank goodness, the following 7 rounds were less eventful now that my anti-nausea combo had been sorted.

There were two side effects of Xelox that hit me the worst after that. The first was the nerve damage it caused to my extremities (fingers, toes and nose) and the second was a horrible taste disturbance that meant everything I ate for about 10 days tasted awful. Nothing seemed to help. The cold sensation I experienced from Xelox was bad enough that on the day of chemotherapy I could not hold a standard knife and fork to eat - they were too cold. I had to use plastic or a kiddie knife and fork. It also meant I couldn't prepare veges for tea (for about a week) as the cold water running over my hands quickly turned painful, and then numb if ignored. Hanging washing was similar. I had to drink luke-warm tap water or hot drinks, otherwise my throat would threaten to seize up. Horrible stuff, but at least it worked.

So the low = horrible side effects. But the high was that after 8 rounds of Xelox my multiple and widespread tumour mets were "gone" and there was no new disease. 

Great news, but received with some trepidation as I have learnt during this journey that even though CT, MRI and PET scans have their uses, they cannot be solely relied upon to detect cancer as they cannot detect abnormalities at a cellular level. So even if it looks like all the cancer is gone, it probably isn't. It only takes one cell left behind (which cannot be seen with the naked eye) and off it goes again. The sole purpose of a cancer cell is to multiply at all costs, and unlike other (healthy) cells in our bodies, they do not self destruct when things go awry. Some Biology 101 there for you.

So, following the news that my cancer was "gone for now" (July 2013) I was put onto active management which basically means a follow up at 2 months, then 3 months, then 4 months depending on how you are going. Unfortunately at my first check up 2 months later the CEA level (a cancer marker) in my blood was back up to its pre-chemo level so I was sent off for another CT scan to see what was happening. I was pretty bummed at this stage as I knew what it meant and had been hopeful for a longer chemo break. In retrospect, there had also been a mental shift during my 2 month chemo-holiday where hope had turned into an expectation that it would be longer. I think I was also holding onto a hope of being in the 1-2% category where chemo actually does kill all the cancer cells. But this wasn't to be.

By the time I got my CT results I knew what they were going to say so I was not shocked to hear that the next step was getting a portacath put in and 8-10 rounds of FOLFIRI would follow. The good news (and we usually can find the good in amongst the bad) was that at that stage my oncologist didn’t feel there was a great hurry to start, so I managed to add another 6 weeks to my chemo holiday. I was thankful for that as it meant I was able to have the school holidays at home with my kiddies without the interruption of chemo, and we headed to Christchurch and Ashburton for a few days to catch up with friends and family down there.

I was supposed to have my port put in the first Friday of Term 4, but the day before that I ended up in ED with a 39 deg temp and severe abdominal pain. Needless to say the port op had to be postponed and I had a couple of nights stay at Wellington Hospital. I recovered quite quickly from that and the port went in a week later, the day before I had my first round of FOLFIRI. I had my second round yesterday (well, I’m still attached, but you know what I mean) and so far so good. I am finding it much more tolerable than Xelox so am very grateful for that. 

So far I have been able to keep my own hair, however unlike Xelox, hair loss is a common side effect of FOLFIRI so my oncologist seems pretty adamant I will lose it this time. So far I have not had any obvious signs of hair loss, but I guess time will tell.

At this stage I would like to touch briefly on the whole issue of living with a colostomy bag and harp back to "everything in perspective." I must admit that living with a colostomy bag is not as horrific as the idea of one. On the whole it has just meant always being prepared (and having to dispose of little bags of poo), and that is something you get used to when being out and about with a baby or toddler. In a strange way parenthood had helped prepare me for living with a colostomy bag.

My next blog is going to focus on the concept of "no man (or woman) is an Island". Obviously this has been a tough journey so far, and no doubt to come, however I would not have been able to make it through without such helpful and supportive family and friends. More to come on that though so I will save it for another day.

Take care, and look after eachother.

The curiosity of my academic and professional pursuits

One thing that I find a little intriguing, given the nature of my current situation, is the academic and professional path I have found myself on. When I was a child, I didn't know what I wanted to be when I grew up. As I made my way though High School and even University, I didn't really know either. I studied Science and Maths as that is what I was good at and what I enjoyed, and ended up with a Bachelor of Science in Microbiology even though I knew by then that I didn't want to be a Microbiologist. I learned about cell biology, genetics, bacteria and viruses, and a bit about cancer. This prompted an interest in Health which lead me to post graduate study in Public Health. I learned about the health of populations, health risks and health statistics. Now I am one of them.

In my professional career I have been a Health Researcher, where I learned more than most people will ever know about the effectiveness and side effects of certain pain relief drugs (of which I have now tried many). I worked with ACC Treatment Injury and Medical Misadventure data for several years where I learned the names of just about every medical procedure under the sun and what could go wrong with them. I learned terminology I never thought I would come across again. Now I am surrounded by it.

In recent years I worked with the National Data Collections at the Ministry of Health where (amongst other things) I extracted data from the Cancer Registry for researchers to analyse. I'm in there too.

And now, I work for the Cancer Team at the Ministry of Health. My current role enables me to feel like I am making a real difference to others who are also affected by cancer whilst still utilising my health and data skills and experience. At times I step back and wonder how this all came about. 

Til next time....