Yesterday I poked my head up from the cave I’ve been hibernating from Blogland in and said a few words. Today I’ve been wondering what my next words should be. I keep walking to the computer. Sitting down, then walking away leaving a blank screen. It’s quite unlike me, because normally if I’m having trouble deciding what to write I at least start with something because even if I start writing then delete a chunk, the process of starting gets the words rolling from my fingertips onto the screen.
Postscript: I’ve kept the first paragraph as evidence that I started it immediately after my previous post! I was finding this blog hard to write, so after writing a few paragraphs and walking away, life seemed to get in the way and it took a long time to get back to writing!
As you can see from the blog post’s title, I’m just going to get straight to the point. The recurrence of cancer is the biggest event in my life right now. I didn’t know whether to ease myself into blog writing a few light little blogs. But I’m a straight to the point kind of girl and ignoring elephants in the room is not my style. Even though I know a portion of you would not realise there’s a big cancerous elephant sitting in the room.
Last year I went for a routine CT scan. I expected to be told I was still in remission. When I came into the office, my oncologist asked me how I was feeling. To be honest, I was feeling tired, wiped out and emotional and “just hanging in there” type of tired. But I didn’t tell him that, because I thought it doesn’t have anything to do with why I was in that room with him. After all, I’m a mother, I was teaching three days a week and 4th term is always busy. I also had a sore chest, but I’d had that last time we spoke, I had told him that this soreness in my chest would flare up every now and again. He sent me for a PET scan because of this pain and 6 months earlier we ruled out that there was no cancer, so he said I could put my mind at rest about that pain, it was probably just scar tissue. So after I said I was fine, he looked me in the eye and with a mild tone of surprise said, “Really, are you really doing well?” I should have realised that was the first sign that in fact he knew that below the surface I wasn’t doing well. Instead I just thought, “Gosh, I must be looking as tired as I feel.”
We looked at my CT scan and he indicated that there were two lumps on my lungs and he didn’t know what they were. (Retrospectively I’m fairly sure he had a pretty good idea…) He suggested we get another PET scan. His words were downplaying it, and when I was in the office, I was feeling positive that it was probably nothing. After I left, I realised that the oncologist’s tone was for more somber then his words. Plus he was in a rush to get the scan done. Radiation was surprised when I said that I needed the results in five working days, and then their faces turned grave and professional as they squeezed an appointment into a previously non-existent time slot. I started to get a bit worried.
At the time, I also was sidetracked by another urgent medical issue that revealed itself in the CT that also needed an appointment with a separate specialist which led to needing to organise a minor surgery around getting PET scans at the same time. It turned out to be a very stressful fortnight with dates changing for vavious appointments and surgeries. One particularly dramatic day I got mixed up with PET scan diets and pre-surgery diet (it’s not like I haven’t had enough surgeries, but I think I was just under so much stress) and I had a surgery cancelled and it had to be re-booked the following week. I was doing a short term teaching contract 3 days a week but I was needing to leave work for medical appointments. This upset me because I even though I knew this was out of control and the school was very supportive and understanding, I didn’t like being unreliable. Having to write relief teaching notes which take me a very long time (maybe because I’ve done so many years of relief teaching I have innate desire to include enough detail) added to tiredness and general overwhelm. Eventually I had to give up the teaching contract, which broke my heart. I had long wanted to teach in that school, but I just couldn’t fit medical dramas and fatigue in with family life.
When the results came back, the PET scan unveiled that not only were the lumps on my lung cancerous, but the centre of my chest lit up showing active cancer cells, so we knew that the Thymic Carcinoma had returned as it was in the exact same spot. The cancer was now sprinkled all through my lymph nodes.
When the oncologist said that the cancer we were looking at was inoperable, my heart sunk into the pit of my stomach. I had been hoping that if it were cancerous surgery would remove the problem.
My oncologist outlined his recommendation for treatment. The catch was it was not going to be covered by Medicare, the government organisation that funds free/subsided healthcare in Australia. Well, Medicare funds you except if your cancer is considered too rare, I’ve discovered. Then, as it turns out, you’re on your own. I also have private insurance, but they also refused to pay for my treatment. We are fortunate that we had some money sitting in the bank ready to be used for another purpose. Alex made the instant decision that we would use that money so we proceeded with Plan A. It’s a relief that we have not needed to sell assets to receive treatment.
The treatment that I am receiving has plenty of reasons to be optimistic. I’m undergoing immunotherapy. It has had great results for a number of cancer patients, particularly lung cancer, which is good for me as the cancer is in my lungs. The immunotherapy I access is on the Medicare PBS for multiple cancers, just not for mine, since it’s so rare. Sorry to go on about this, I’m not trying to play the sympathy card, or ask for money, I just want people to be more aware of how hard it can be for the 30% of Australian cancer patients who have rare cancers. If you want to find out more answers, Rare Cancer Australia is a great website.
Every three weeks I travel to Brisbane to receive a drug called pembrolizumab, (more commonly known by its trading name, Keytruda for those of us who are not skilled at pronouncing long medical words.) I receive it intravenously through my port. Well that was after the first treatment. 366 days earlier, all optimistic, I had removed my port. Because I had been in the doctor’s office receiving the bad news on the Thursday and then on the Monday was in Brisbane receiving treatment, there was no time to consider whether I needed the port again. After that first treatment after multiple bruises and far too much leaking blood as needles were unsuccessfully inserted it was obvious I needed to go in for surgery and have the port re-inserted again. However since that has happened treatment days have become a sinch since there’s no need to access my dodgy veins.
Fast forward. I had four treatments and then a scan. For my 4th treatment I had to fly home alone without my family from the Philippines where we had been holidaying together with extended family to celebrate my brother’s 40th birthday. The scan results weren’t as good as I hoped. I had hoped that everything would have been shrinking. Instead, the main thymic tumour had not changed, which wasn’t bad news. Because it was stable I could continue with immunotherapy. (Plan B is a high dose of chemo. Definitely not my preferred option.)
The not so great news was that the lung cancer lesions had grown. The oncologist said there was a possibility that the growth was a rare case of “pseudo growth”. It’s a rare, but well documented, response that some people had to immunotherapy where the cancer gets bigger before it starts shrinking. Nevertheless because I’m relatively young and healthy, he recommended not taking any chances and proceeding straight to radiation. After treatment we had a long talk to a radiation doctor. We asked lots of questions and in the end we were planning on proceeding with radiation, but he took our case to be examined by a team of cancer specialists. The advice from that group was to proceed with treatment, have a scan sooner than usual and if the tumours have shrunk proceed with immunotherapy as planned. If the lung cancer has continued to grow, proceed with radiation. If there is any other activity or the thymic tumour has grown abandon immunotherapy, proceed to high dose of chemo.
My preferred option (apart from complete miraculous healing!) is to see that everything has started shrinking and that I can continue with immunotherapy. Despite the significant cost I have had minimal side effects, so my quality of life while having treatment is amazing. I can still function for my family, I’m doing a little bit of work and I’m out to go out and about without fear of having a compromised immune system and socialise or even worship with my church family. I feel so fortuntate to be reaping the rewards of all the brilliant minds who have facilitated such a user friendly cancer treatment so I’m praying that it will keep working until I’m in remission again.