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......