Today I discovered that there are two things I don't like: pain, and not understanding something.
The pain at the site of my new infusaport, and where the catheter tracks into my jugular vein, has lessened over the day, but I woke up with a very stiff neck, from having tried to guard it overnight as I slept. At least I slept well, but it's not fun to wake up with a stiff neck, and then to have to move it and deal with the emergent pain. I can't walk around with a hunched neck though, so I gently unhunched, and managed it with regular pain relief, and two walks down the long corridor and back.
As for the things I don't understand: I'm not worried about having the bone marrow biopsy tomorrow, I can cheerily submit to medical procedures, such is my perhaps foolish faith in the medical profession. The thing that worries me is what the results might mean. I don't understand bone marrow disorders, I only understand that the bone marrow produces various blood cells, that chemotherapy, and other drugs, and other conditions, can affect the bone marrow, and that mine is not working as it should at present. I had two units of blood yesterday, and while my hemoglobin improved from 66 to 90, my platelets from 78 to 83, and my white cell count from 0.8 to 1.2,, my neutrophils dropped from 0.3 to 0.1. They were at zero on the third, so it was exciting, for one day, at least, to have the, at 0.3.
I've had a good day, otherwise, with an old friend visiting, and a call from another. They both have an uncanny knack of lifting my spirits, and of making me forget about my worries. There are several people who have this ability, and I'd love to call them, but the tears and fears are just below the surface, and I know I'd start crying if I called them. I cried when my nurse came in this morning, and she started crying too, saying I'd been so brave. I don't want to make other people cry, so I'm going to have a good cry in private and get it out of my system. Then I'll say some mantras, which are bringing me great calmness and focus, and then I'll go to sleep.
It's hard though, there are s many people I want to contact, to tell them how much I love them, how much i miss them, how much I wish I was healthy ,so I could just call them or see them without vine held,back by fatigue, nausea, neutropenia, distance. I think my maudlin state of mind is partly affected by having a friend with lung cancer who has been given 3 months to live. She looks just like she always did, apart from the breathing apparatus, and it's hard to believe that there's something in her body that's killing her. It's so unfair.
I'm not dying. My brain scan was clear. There's something wrong with my bone marrow, we don't know what it is now, but once we know, we'll be able to treat it.
We've dropped quite a few of my medications to try to eliminate pharmacological causes for bone marrow suppression. I've even stopped taking my supplements, just while I'm in hospital, to try to make things simpler.
Reciting the Tibetan mantras is helping me to focus on good health, healthing, overcoming obstacles, and achieving enlightenment for all sentient beings. It's helping to drive away fears and doubts, and to give me something to focus on.
Doing the mantras brought back a long-forgotten memory, of when I was an intense, book loving 8-year old, who was very concerned that people should read the bible and say their prayers, so that they would be kinder to other people and animals, and so that they would make the world a better place. I asked if we could say the Lord's prayer in class, and the teacher thought I was asking that we sing the version that was popular in 1975. I didn't know it, no one else did either, well, not in full, and the song fizzled out, and the verbal and nonverbal responses from my classmates taught me to never talk about prayer in public again, unless I wanted to be laughed at.
Pity, I've held the same desires to help other people and living things ever since, and it may nhave helped me if I'd kept up a regular spiritual practice since then. Better late than never, I suppose.
My iPad battery is running low, and is likely to crash, so I'll say goodnight, and correct the typos tomorrow. The cursors playing up
I've had a good day, with on old friend visiting
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
Background and overview
I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.
My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.
If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.
