I think the less I say about my last chemotherapy experience
the better. Even the minimal information I do intend on parting with will
probably gross you out. Basically, there were too many bodily fluids flowing
from too many orifices. There are certain biological functions that, as an
adult, one assumes they will always have under control. Ah, welcome to
hospital! Here is a bag for your possessions, and another for your dignity.
You’ll never get the latter back. The majority of the three days was spent
playing trial and error with food sources in a vague attempt to keep said
sources in my stomach. The error rate was high. Eventually, I stuck to minute
sips of water. Despite my vomiting, shame, and general sentiment of doom and destruction,
it was difficult to feel sorry for myself. The guy through the wall from me
would heave for an hour straight. I, at least, threw up my pathetic meals
rather quickly.
We are not entirely certain what lead to such an extreme
decline in my chemotherapy tolerance. There were two variables, which I know is
terrible science but I cannot help that now. I am beginning to think that
biology is more of an art than a science. I will use this to justify my
multiple variables. Anyway, where was I? Variables, right. I had begun a
rigor-fever cycle a couple of days prior to this round of chemo. The fevers
were never massive, they were deemed low-grade (which I believe means less than
38°C) by the medical staff. This time the rigors were blamed on the lymphoma despite
my full blood count resembling an infection. I may have questioned the numbers.
Twice. I still suspect I had an infection. The rigors do not matter much now,
they have resolved, but a week ago they wore me out dreadfully. I was like
super tired before chemo even began.
The second variable involves the anti-emetics, which were
altered slightly. They withheld the steroids. Initially I was happy with this
move. I do not care much for the side effects steroids have to offer me, namely
the pressing need for two a.m. snacks. Unfortunately, here I need to swallow
what little pride I have left and confess: chemo is easier with steroids
on-board. I feel better throughout and I feel better afterwards. Perhaps this
may be deemed performance enhancing, but seeing as I am not a Russian track
athlete, I don’t think anybody is going to mind too much. The day after my
discharge I spent twenty hours horizontal, fighting, not really fatigue, but
some haze between the real word and unconsciousness. Aside from a vague nausea
and a relatively vocal stomach, I was not in any real discomfort, my eyes just
refused to remain open and I could barely move. Next time I will take my
dexamethasone like a good little girl and, perhaps, have days of production
rather than destitution.
I have written more than I intended about my last chemo. It
is a period I care to forget about. The topic I had actually intended on
writing about is statistics. This could be an opportunity for you to stop
reading. Things may get a little dark from here on, and the word ‘statistics’
has been used so, naturally, I expect some of you have drifted off to sleep. Also,
I may mention particular statistics that you may not wish to know about. I kind of
wish I did not know. I have stopped asking. So if you want to tag out right now
I really don’t blame you. In fact, I admire you for lasting this long.
Chocolate fish all round.
In July, after I received my unfavourable news, I was forced
to think a bit. People talk about glasses and their perceived volume; is the
glass half empty or half full? Most would probably decree that I was a
glass-half-empty type of girl. To be honest I never really put much thought
into the matter until I was, well, forced to. Upon reflection, I realised I was
the type of girl who obtained, through certified channels, the exact capacity
of the said receptacle, analysed the volume of the liquid within the
receptacle using a traditional measuring cylinder, confirmed the result using a weight based technique (verifying the equipment's calibration status in the process), and had therefore discovered that the liquid occupies 47.25%
(+/- 0.25%) of the volume of the receptacle; so indeed the glass is more than
half empty. What I am trying to say is I like to know all the facts. And then I
will overanalyse those facts.
In early August I became a little obsessed with statistics.
I listened to the doctors, I read the textbooks, the papers, the review summaries;
I knew the feedback cycles, the treatment regimes, the drug interactions. Then,
sometime during my August-September diagnosis period, I developed a thought
pattern, probably incorrectly, that medicine as a practise was entirely
statistics. The case studies, clinical trials, meta-data analysis, create these
numbers and percentages that are then used to treat patients. This is why my diagnosis process was so thorough: “It is very rare, Mrs Stocker, for you to
have relapsed or refractory lymphoma given your clear scan in April.” It is
like 8% rare or something like that. Not really rare, more statistically
unlikely. I had a 92% chance of achieving remission and I blew it. Somebody
needs to make up that 8% and once you find yourself in that minority group you
cannot wish yourself out of it. As soon as you do that you are effectively
wishing it on someone else. I would never wish this on anyone. For the 92% who
made it through I am happy for you, but also a tiny bit jealous.
Having been blown away by stupid minority statistics, it is
difficult to take the rest seriously or optimistically. Apparently 50% of
patients are successfully harvested. Given my rapid relapse, that figure drops
below the half mark; somewhere between 25 and 50%. So I had a 92% chance of
remission and now, with some extremely positive thinking, it is around 40%. I began
shying away from success stories, as if those whose treatment worked chipped
into my 50%. It is not that I didn’t want other patients to be successful, I
just didn’t want to hear about it. This is, of course, absurd logic. Each
individual’s case is mutually exclusive, statistically not even medically.
Medically each case is like an ENZA orchardist comparing apples with apples. I
started to get cranky. What does ‘successfully harvested’ even mean? Do age,
previous medical history, or charming personality effect these statistics at
all? Is there a time frame? Is it six months? Three years? Five years? I would
be happy with five years, hell, I would be happy with three. What happens if I
am unsuccessful? Actually, I know the answer to that one: more treatment, worse
statistics.
Eventually I became overwhelmed by statistics. 50% of
salvage chemotherapy patients present with neutropenic fevers. 1% will die from
these fevers. Less than 1% of patients fail to have a PICC line inserted. 99.9%
of female salvage chemotherapy patients over 25 years of age become infertile. 50% of patients discuss fertility preservation options. 50%
of patients who discuss fertility options actually take up the
options. 10% go on to use the stored material. It is ‘unfortunate’ but not
‘unheard of’ to have needed multiple biopsies pre (or mid) diagnosis. At least
they did not attempt to quantify that one. I have a scan coming up that will
alter my statistics. Not the scan itself, but its results. Over the last couple of
months I have stopped reading the statistics. I cannot change them and,
although there is no point in dwelling, I did tend to fixate on them a bit. Ok
a lot. Now, in order to make an informed treatment decision, I am required to
read the science and statistics once again.
In here, this cancer institution, this day ward, this
haematology ward, we are all unfortunate statistics. Not one person I have met
has obeyed the textbook. Bone marrow transplant patients have had failed stem
cell transplants. They were happy with the time they got. In the community the
people one meets are usually survivors. Here, they are sufferers and
complications. And there is always someone more worse off than me.
Some days I get hung up on the statistics. They are totally
beyond my control and I think that is what bothers me; there is nothing I can
do to change which side of the statistics I fall on. I get frustrated, sad, and
angry. Other days I find it all oddly liberating. That life plan that always
niggled at the back of my mind, a career, a house, some kids, a few cats, a
handful of chickens (they would get along with the cats just fine), that plan doesn’t
exist anymore. It is not even possible. I mean, Piper would never tolerate a chicken.
During the days of liberation it feels like there are no expectations of me, like
the only thing I have to worry about is being on the good side of statistics,
the statistics I can participate in, but cannot control. It is odd to have these contrasting days.
I would say that there is a strong correlation between how I am feeling
physically and how I am feeling emotionally. So is the glass half empty or half
full to me? Well, unless we are talking about a beer jar, I really do not give
a damn.
