I had chemo on Tuesday and I think I tolerated it really well. I feel like my liver is going down, I feel well mentally amongst all the other stuff that is going on.
I feel good and positive even though I intellectually know that a 17ml dose – yes less than that cough medicine dose you take – is just a very low dose to check if my liver will cope.
Apparently it is a half dose based on my height and weight and liver sensitivity. The oncology nurses joked at how small it was. We will increase or adjust the dose as necessary as we monitor my reactions, blood tests and physical signs.
The Chemo on Tuesday
I really wanted to let you know how Tuesday went.
The chemo itself doesn’t have vomiting as a side effect. Although there were a few stops on the way probably due to nerves and with my liver I do vomit often if I get the mix wrong.
The name of the drug is nab-Paclitaxel (NABpak-li-TAX-el) and apparently is the 2nd best chemo drug available for breast cancer and very tolerable. Total hair loss is a side effect, but cold capping successfully prevents (or minimises) hair loss. So I thought I would give it a go. I was really scared of the cold and didn’t think I could do it. As it turned out, it was very bearable.
The Next Day
I planned yesterday – Wednesday – as a rest day – a crash day. Previously when I had stronger doses of IV chemotherapy the following day was a steroid day where I ate and zoomed around the place as if I was on speed. Then day two was a crash. I would lie in bed for 24 hours plus not eating, hardly drinking, just laying on my bed in a dark room. Sometimes sleeping, sometimes just laying there.
The boys would check if I needed anything on their return from work. Hot water bottles, water, tea. Did I want to eat anything?
This time was completely different.
Although I do admit I was feeling a hell of a lot better at this point than the hardly comparable IV chemo. I had so many interruptions - calls from services and a lot of them. All worthwhile of course but not on this wonderful calm day I had planned for recovery.
Side Effects
Of course, the main thing we are looking for is my liver tolerating the chemotherapy, but it is a risk I am willing to take. I know the signs to look for and manage this as well as possible.
Side effects from the actual chemo are, nerve damage (peripheral neuropathy), mouth pain, soreness and ulcers, infection risk, low immunity, low platelets, tiredness/lack of energy, skin rash, low red blood count and nail changes. Wow, that sure was a list and there are actually a few more I didn’t mention.
Some of these side effects I am already experiencing in the liver failure stakes. I can no longer eat nuts and dried fruits (something I use to regularly snack on to keep hunger pains at bay). The mouth soreness has been going on for a few weeks now and they just stick to my mouth and gums and make them hurt.
The rest hopefully will be manageable.
I have tried everything
I have honestly tried most things. If I haven’t, I have researched it extensively and decided it isn’t as promoted. The anti-cancer world is profitable, not just for big pharma, but for those self-promotors with their one cure to every cancer story.
I try those things that are successful for the type of cancer bestowed on me. I also look at the workability and where it would fit in. Things don’t happen in isolation and need to be coordinated in the right place when your body is ready to process them.
Some things are just crap too.
Stage 4 is so different to stages 1, 2 and 3 in the cancer world. And the lack of knowledge is astounding.
Early stages are very curable. Stage 4 is when the tumours have metastasised to further parts of the body. Stage 4 is incurable. All books seem to concentrate on early-stage cancers, not advanced as is Stage 4.
The best outcome, if you have Stage 4, is if the cancer has ‘only’ spread to distant lymph nodes. These people can live 15-plus years. My original Mets (as they are non-affectionally called) were to masses of lymph nodes, most of my skeleton, and my liver. That is not a good prognosis. Unfortunately.
While the lymph nodes went within the first three months of treatment and never returned, the ones in my liver and bones grew fast and were back within three months.
I believe in using everything available – standard oncology care, acupuncture, complementary medicine, adjunct therapy, diet, acupuncture, metabolic pathways, medical cannabis, meditation, energy work, and so much more. For now though I need to concentrate on knocking these tumours down, getting rid of fluid, and then going back to a liveable life for as long as possible.
I have a great team of extremely good, qualified and knowledgeable professionals. This includes an oncologist that does specialise in triple-negative and well as Stage 4 and undertakes medical research for that purpose. I have excellent naturopaths, dieticians and nutritionists, wonderful acupuncturists, fabulous cancer physiotherapists and exercise physiologists. I am still looking to connect with a better integrative doctor. There are more I can’t think of as well.
We Are All Individuals
Even within Stage 4 there are huge variations. Triple Negative Stage 4 is no different. It is not one group with the same cancer but many different unknown cancers including the BRACCA genes, which does not apply to me.
It is common for an organ to go outside the parameters and there be this crucial period thrust upon us. Or it could be an infection or pneumonia. Things eventually go back to normal and life goes on for a few years or more. We all know that statistics are years out of date and everyone does much better than the statistics predict. I have known so many people told to get their lives in order and a year later are still going strong and off medication.
We are all individuals. I am more than happy to inspire others who are sick. I never want to undermine another person’s sickness. Everyone’s pain is relevant; everyone’s sickness or healing journey is relevant. You have just as much right to complain as me. Never apologise. Please. Always express your needs.
Right Now I Feel Good
I feel good within myself. I feel like the chemo is working. I feel like I am tolerating it well. Although at the same time, I don’t really know this at all. Perhaps it is my mind making wishes.
I am yellowed in my skin and face which isn’t good. I am supposed to poop 3-4 times a day and haven’t today for the first time. This clears toxins my liver would normally process and stops inflammation going to my brain. I will sort that out quick smart tomorrow. My urine is dark, but I do see it coming clearer at times. I am getting better at my limited dietary mix.
The next month and then the next three months are important. I am confident I can get back to a place after that where I can do things, go places and participate in the world in a meaningful way.
Last Night I Listened to My Last Oncologist Appointment Recording
I always record my appointments now, both in person and via telehealth. They talk so fast. It’s hard to take notes and listen especially when your brain is foggy. I don’t ask anymore. I just turn it on before I walk in, point the microphone towards the conversation, have the case closed or upside down, and always be on silent.
I have realised it is always wise to relisten to appointments. I miss things totally and am constantly surprised when I hear certain things.
After listening, I called my daughter. I said we must have optimised it a little, and was that for my mother, (who we were visiting next and has vascular dementia) or us? My daughter told me it was me, not her, who did that. That she had taken on the significance immediately. She actually went straight downstairs and, after saying fuck for a good 30 seconds, rang her brother in Queensland and told him to come home as soon as possible.
In the meantime, I am sitting upstairs elsewhere in the building, also saying a good 30 seconds of fucks.
Apparently, I am too soft and would have told my son that it was ok for him to wait a month until he was coming home for some shoulder surgery in mid-August. My daughter knows me well.
After listening again, the recording has some important takeaways I will share here. And then we won’t think about them again.
The Bad News
These are my key takeaways.
Eventually the cancer will win this – all we can do is delay.
Chemo, where you have had several lines already, (that's me) a new one will only really work for 3-4 months medium.
The medium time before cancer starts to regrow again is also 3-4 months.
In terms of life expectancy I should be thinking months not years. Again medium.
This chemo may not work but we need to try it. Hopefully it will outsmart the cancer for a long time. It is a good chemo and it is reasonably well tolerated.
My liver is currently taking up half my stomach it is so large, and it is full of tumours and fluid.
We have a little window of opportunity to act.
Back to my thoughts now.
Taking this on board is challenging. It’s confronting. It’s not fair. I can see why I minimised things in my mind.
I do wonder about the medium stuff. A medium is a midpoint – some do better, some do worse. Previously I was always on the ‘do better’ side. Always. I do believe I am still there, and this is a temporary hiccup. I am still healthy under all this disease.
Now I have that out of the way, I can concentrate on getting that first month, and then three more done and dusted according to plan.
Accepting Help
My biggest lesson in all this has been accepting help. I am a very independent person and asking for and accepting assistance has been not only a learning experience but a very positive and liberating one. I can now do it with far more grace and clarity than before and am feeling blessed by all the support I have received already.
Local people can get in touch if they wish to help by joining the WhatsApp group created for this purpose.
Right now I am resting and concentrating on my strength and health while on chemo for the next three months. If all goes according to plan, I’ll be out and about soon and back to enjoying life.
Honestly I cry sometimes at this incapacity I am currently facing. To be only able to walk 20 metres without having to stop and recover my breath is not just frustrating; it is demoralising. That’s at home too. And I can’t sit for too long because my now boney butt hurts if I sit too much. How ironic. It shows how much this disgusting disease has already taken from me.
That’s All For Now
No more morbid posts. I just needed to get that out of the way. From now on just some quick or slightly regular updates, perhaps some reflections on life, perhaps some reflections on death. Things that will help others.
Thanks for dropping by.