Posted on April 11, 2016
I almost danced into the chemo ward on Tuesday. I had had my cancer markers taken the day before, just to confirm that sirt was still working, and I could walk out of there that day with the promise of not having to return for a while. I had a scan booked for next Tuesday, just to back up what the bloods said, and then results on the Wednesday. It never crossed my mind for a minute we wouldn’t be on track.
So, as soon as I sat down in the chair, I asked for the blood tests print out. I always look at them, and I had been enjoying seeing my liver function tests trending downwards until they had reached normal parameters 3 weeks ago. My oncologist had asked me not to see my cancer markers when he wasn’t with me though, as naturally he wants to be able to be there to talk me through it if they say something alarming. But in my mind, there was no way known they were going to show something alarming.
The first thing I noticed was on the first page, some of my liver functions were in the black again. The dark black. The colour of not normal. It wasn’t a significant rise though, so I tried not to be alarmed. I turned the page, ready to see the CEA markers, which had dropped from the 400’s to 108 in February. I expected something in the 40’s, or 50’s, and even had a little fantasy that I would be able to tell you all that they had dropped to normal too.
The number was 381.
To say I was completely blindsided would be an understatement. Nothing prepared me for this. I KNEW it was going the way I thought it would go….I’ve felt so good, we had a wonderful holiday in QLD, I was looking forward to Thailand. How? And for fucksake WHY? Was I so crazy thinking it was my turn for a break? Reading my last post seems to prophetic to me now…..I feel like I really WAS putting the mozz on myself by being so SURE.
Before SIRT and the promise of radiation on my lung mets, and the way everything looked like it was working so magnificently, I was in a really scared place, and it bought me to a standstill for most of the last months of last year. I had all the excitement of the book and the launch and the publicity, but that dies down, and I had no motivation to back it up. I was back to wondering seriously how much time I could have. Nearing my “two years”, not knowing when the second line chemo would stop working, leaving me with nothing but third line chemo, one tiny little drug I have left, that is going to leave me with a rash all over me, especially an acne like rash on my face. Hang on, doesn’t the fucking universe know I look the best I have in my life, an acne rash, I DIDN’T EVEN HAVE ACNE AS A TEENAGER. The day I was told that I have to start that third line chemo was the day that struck terror into me, only one step less than the day I say goodbye to my oncologist for the last time, as his work with me is done.
Wednesday, we arrived at that day. I had managed to get an urgent scan and appointment with my oncologist so that we didn’t have to wait another week to find out what those numbers mean. Problem is that we still don’t really know what those numbers mean, as the scan was stable. We know something is growing somewhere, but we don’t know where. I have never gone into an appointment like this, my oncologist was shocked. I usually apply the dress up, show up, never give up policy to my appointments with him especially, as I have always felt that the more zest for life he realises I have, the harder he will fight for me. Last Wednesday, it was black yoga pants, no make up, sobbing, and Gaz and Bekkii either side of me, all but holding me up. I’ve never been lower, and my oncologist did comment on it as I came past….”I’ve never seen you like this….”. How long can I keep taking these blows.
He didn’t put a positive spin on it, but he was pragmatic, as usual. He started writing up the third line chemo, and recommended that I report to it right on schedule, not miss a session, except now, if you don’t fucking mind, it’s WEEKLY. Weekly til you die, a rash for the rest of your life, nope you are not a contender for radiation now. Not really a contender for living. Let’s see if you can make Christmas. No, he didn’t say that, but he did say “we always knew Julia that we can’t make this go away, we are only trying to chase it away for as long as we can”. And he shook his head sadly, very much giving me the impression that we can’t do it for much longer. I’m not knocking him, we had a rocky start as I felt he wrote me off too quickly, but over the years we have reached a really good place. He got me to have SIRT, and I did live on the hope of the good work it was doing for a while. He did find me that amazing radiation oncologist, and I lived on the hope of his talk of controlling my lung tumours for a few years. If SIRT could do the same to my liver……
I’ve fallen at the final hurdle, again. For 13 months we fought to get me that liver resection, something that ended up becoming the most unlikely thing. I had to jump so many hurdles and nobody believed I could, but I got ALL THE WAY TO THE OPERATING TABLE. Then I fell. I had SIRT, it worked, I saw the radiation oncologist, I planned a long chemo break, and stable cancer in two organs, and a much longer life than I thought I was going to have, and I lived large on the hope that offered. I got all the way to the “last” chemo session, that “good” scan I was going to have, the next step would have been the lung radiation….I FUCKING FELL AT THE FINAL HURDLE AGAIN. I remember saying to Gaz when the whole SIRT thing came up, “I am so scared to hope again”. And I was. But I also remember writing about how hope of the liver resection gave me a much more normal life until the day I couldn’t have it, and I have to say that these last few two months have been good too, as I believed so hard. By christ it’s a long way to fall when you see that shake of the head, though.
I don’t know how I am still doing life and staying sane. Honestly this time, I don’t know how I am. I am facing my greatest fear, third line, LAST line chemo, with nothing much available to follow it. Weekly visits to the unit that I am seriously struggling with bi’weekly visits to. No break. No Thailand. I was going to be in the city at Births, Deaths and Marriages getting my birth certificate and applying for an urgent passport, I was going 1st of May…only a few weeks away. My oncologist said everything had to be stable, and it’s not. Also, despite him saying that he doesn’t believe the radiation oncologist will offer me any treatment now, I begged him to ring him, and to his credit he must have put my case forward pretty strongly, as the radiation oncologists receptionist rang me the very next morning with an appointment to see him next Monday. I don’t know if he has made it just to show me the courtesy of telling me personally that there is nothing he can really do now, but I hope not. I’m willing to beg. Conventional medicine is failing me, chemo is failing me, I need someone to take an aggressive and innovative approach, or I might not be in the audience for Indi’s graduation at the end of the year. And I just bloody have to be. All the people you read about who survive stage 4 cancer longer than anyone else seem to be the ones who chase the treatments, anywhere they have to go. So, that’s what we’ll do.
Physically, I feel fine. I know my breathing is worse, but the doctors would tell me that there is no reason for that, that the lung mets are not big enough to be causing this yet, but I know it is. My liver….well, there has always been some pain in my liver, for all the years I have been diagnosed, and I certainly still have that from time to time. For the last couple of months, it hasn’t scared me, as I have been sure it has just been SIRT attacking the tumours and giving me a bit of curry at the same time. Now, every pain is panic. I still feel better in that area, more energetic in general, my eyes are white, my skin is clear, I am actually hanging onto this tiny hope that the sirt IS still working, and it is just my lungs taking off and causing this number spike. The creeping up liver function tests don’t really bear this out though. How can they have been normal three weeks ago? How can things turn around so quick? Unfortunately, my oncologist says it happens all the time. So, I am being gentle with myself, taking regular (just off the shelf stuff, nothing strong) pain relief to try and keep any liver pain at bay. Doing small things often to try and not get too out of breath. For the first time I am using the blue drops that palliative care gave me over a year ago to stave off panic, nightly. I keep my days busy and fun, and grounded in the reality of my life. That there is still washing, and dishes, and kids to get back to school, food to buy, shoes to find that were lost before the holidays. It’s like I feel if I keep walking through my normal days, it can’t catch me. And at night, I lay down, and I take my drops, and I breathe and try and bring myself back to the present moment, and usually, I can sleep, without the demons chasing me through all the dark hours.
I think I have become a lot more “spiritual” since all this cancer business happened. I used to be the most pragmatic person and thought that it was all bullshit. But since diagnosis, I have become more aware of things that I have thought in the past, and the connection they have with what is happening to me now. There are some things I am reluctant to take on board, such as the pain that I held from my years of sexual abuse somehow built up in me and caused me to get cancer, because I didn’t resolve it. That’s too much like blaming the victim to me, and I am not going to do that to myself. However, I often think about something I told a very good friend a year or so ago….I don’t know if I have spoken about it on the blog before, as I am aware that it would sound somewhat insane to some people, but here goes. I said to him that when I was in my late teens, I always knew that I would not live a long life. He was interested in this and wanted to know why. I said it was because life felt so unbearable to me then, but I never wanted to commit suicide or anything like that…just this revelation that my life was not going to be a very long one was enough comfort….that there would be a limit on how long I would have to endure it. It does, even to me, seem that I predicted my own fate that day. But I said to the same friend, some months later, what if you change your MIND? What if you realised that you had been living, not enduring, and you wanted to keep on doing it. I’VE CHANGED MY MIND UNIVERSE! Can you re-write it? I don’t know. Am I going to be the person whose cancer just got too aggressive, and pretty much dies on schedule (what’s with another Christmas deadline?) Or am I going to be the person who can come back on this blog and say to all the people out there who are looking for hope, LOOK, I dodged another bloody bullet, you can do it TOO! I hope the latter, I hope it with everything I have.
‘Til next time. With love and hope to everyone who needs it, INCLUDING ME!