Archive | May 2015

The protocol

the fam

My precious family.

My doctor had decided on the next course of action, and it wasn’t exactly what I wanted to hear. First of all, the catheter that I’d had inserted into my chest to administer my chemo treatments would have to stay in indefinitely. I was so looking forward to having that removed. I always had to be careful that I didn’t hug someone too tightly and always be careful not to bump myself accidently in the chest area in general, because if I did knock the port by accident, it was painful and radiated outwards like a ring of fire. Not pleasant. It would’ve been really good to be free of that, but it wasn’t to be. Triple negative breast cancer patients don’t have the option of being able to take low grade chemo in tablet form at home. Like before, I would have to go into the hospital once a month and have my treatments there, which would take up an entire day. My doc wasn’t prepared to remove the port just yet, because he also wanted to make sure that I would remain stable for long enough to warrant taking it out. Low grade chemo given intravenously, together with Avastin and Xgeva injections would be my monthly routine from there on out.

So, this leads me up to the present day where a year and two months later, I am lucky enough to still be stable and in partial remission. I think I made the mistake of diving onto the internet as soon as I got home once the doctor had decided what protocol he wanted to follow, to look up what side effects and possible risk factors were associated with taking Avastin. As far as I know, it was removed from pharmacy shelves at one point due to the high risk factors involved, and I’m not sure whether it was or has since been reinstated, but one of the risks that scare me the most is internal bleeding. I blow my nose like it’s made of porcelain, and every time I go to the toilet, I have the undignified and in my mind, revolting task of constantly checking the toilet bowl for any signs of bleeding. I’ve got used to it now, and there have been a few times when my nose has started to bleed and luckily stopped after a few minutes. There have even been times when I’ve had some bleeding on my underwear that has concerned me, but that has very luckily stopped on it’s own too. It’s a psychological game between me and Avastin. It’s constantly trying to break me, and I won’t lie when I say that I do have my days where I am paralyzed by fear and uncertainty for the future. On those days I struggle to get out of bed and am barely able to function. I mostly lie about listlessly and aimlessly, unable to do anything constructive and suffer from debilitating fatigue. However, the next day I luckily seem to bounce back with my natural optimism kicking in again and my energy levels recovering. I am able to rush around, squeezing as much into 24 hours as is humanly possible. I suppose that one could call this bouts of depression, but you know what? I think after everything that has been thrown in my direction, I’m perfectly entitled to them!

This entry was posted on May 21, 2015.

Utter relief.

Although I had already had a scan half way through my treatments, they were no indicator as to how things would turn out in the end. One of the hardest aspects of having cancer and the brutal treatments that go along with it, is that there is no guarantee that any of it will work. The stakes were high and I had a lot to lose if my cancer did not respond. The day after my last chemo session I went for another CT scan. I remember sitting in the changing room after donning one of those hideous and very unflattering hospital gowns that refuse to close at the back, and sitting in the chair with my head in my hands, praying. My palms were sweaty, my mouth and throat were dry and I shivered because of the freezing aircons that had been cranked up because of the 45 degree heat outside. I was barely holding it together.

There is now a new kind of testing called Genomic Profiling, where a piece of your tumor is tested to see which treatments will be most effective in treating your type of cancer. To start with my doctor had not yet decided which protocol of treatment to follow now that my chemotherapy was over, to keep me stable and in partial remission for as long as possible…if the chemotherapy had even been effective in the first place. He was thinking about sending my tumor in for Genomic Profiling due to the complexity of my case, but wanted to hold off for a while longer. These tests are very expensive and he wanted to look into alternative treatments for the time being in order to keep as many options open to me as possible.Flowers

After going for a preliminary scan, drinking a nauseating amount of contrast fluids and waiting for an hour for my body to process it all, I lay on the table for the final scan. As the table moved back and forth I prayed harder than I ever have before.

I’ve never wanted to bring religion into breast cancer…the two definitely don’t gel and one has nothing to do with the other, but lying on that table I wasn’t praying to God. My faith by this time had been shaken to the core and I was still clawing to try and get it back. I have to be honest at this point and tell you that I have never been a particularly religious person.  I do believe that there is a good force out there and maybe that is my God. I suppose I conceive God to be different to how a lot people see it. Like my mother I am more spiritual. One of my beliefs is that according to the natural law of the universe, whatever you put out comes back to you. If you are a positive person and do good for others, you will receive good and positive things back. I think that I was lucky enough to inherit my mothers natural optimism and love for life and so when I was diagnosed, I was shattered. I was never a bad or negative person, so how on earth could breast cancer happen to me? I mean you get murderers, rapists and others who do despicable things, but do any of them ever get cancer of any kind? I think not! It was all so confusing and my belief system started to dissipate. After trying to live my life the right way, how could the universe be so random and cruel? How could my life be reduced to hanging from a cliff’s edge by me fingernails?

None of it made any sense…and then with time it slowly dawned on me that not everything that happens in life holds mystic meaning behind it. It is a lot more comforting to hold onto the belief that things in life happen for a reason, and often they do, but sometimes things in life do just happen full stop. No meaning to hold onto, to keep your sanity intact. Just this terribly difficult pill that you have no choice but to swallow.

A week later my doctor delivered the news that I’d been waiting for a long time to hear. The treatment had worked. My scan was almost clean and I could breathe again. My family and I were absolutely elated and I felt like a huge weight had been lifted off my shoulders. I had a new lease of life again. I planned to return to the gym as soon as my energy levels allowed and most of the immediate side effects from the chemo had abated.

The worst was over and just that knowledge was an immense relief, however my treatment would need to continue in order to keep me stable…and we still had no idea what that was going to be.

This entry was posted on May 7, 2015.