If you’ve been following my blog you will know that I’ve been receiving shots of Neulasta every two weeks in order to counter the effects of the chemotherapy on my white blood cells. After five months of paying for these shots my wife discovered that financial help is available. You may be entitled too – check out http://www.amgenfirststep.com/
Category Archives: Neulasta
I saw my oncologist, Dr Tache, yesterday and described my symptoms to him. He listens, and it’s obvious he does, and that’s good. When I was telling him that there had been two or three days when the roof of my mouth, much of my tongue and the top of my throat had all been numb, his ears really, really, picked up and he commented “I’d have sent you to the hospital.” It seems these symptoms might be indicative of my having had a stroke. They aren’t symptoms I’ve ever heard of in connection with a stroke and I’d just put them down to side effects of the chemo and/or the neulasta which, of course, boosts my white blood cell count but can be quite painful, this time causing pain from my pelvis to my knees for three or four days. Had I had trouble with my speech, with my vision, crushing pain in my chest or my arm or even a sudden urge to void my bowels then yes, I’d have associated all of those things with a heart attack, but not the numbness in my mouth and throat which in many ways seemed just to be an extension of the varying patterns of numbness I’ve been experiencing on my tongue ever since I started the ABVD chemo to rid my body of Hodgkin’s Lymphoma. Anyway, although we went ahead with the chemo yesterday, Dr Tache is concerned and wants me to have a variety of scans and specialist reports to make sure my heart, brain and lungs are all functioning as they should be which is all fine and dandy, just as it should be, but, of course, some of them must first be approved by my insurer, so, who knows whether or not Dr Tache will get to know what he wants to know and whether or not he will be able to make an informed opinion as to how we continue my treatment.
We all had a great time with my daughter who had an absolutely nightmare trip over here. She’d booked her flight with US Airways from Manchester in England which meant a drive of about 100 miles from her home in the West Midlands. When I went to bed the night before her flight the flight had been put back, but, when she arrived at the check in at around 8 a.m., she discovered that the flight had actually been cancelled. The best US Airways could offer was a flight on the Sunday, two days later. Not a lot of good when you fly home two days after that. Now, I know nothing about US Airways reliability but this site http://www.euclaim.co.uk/us-airways-flight-delays seems to show that the Manchester – Philadelphia flight was cancelled three times in seven days which hardly sounds good does it? Anyway thanks to the efforts of her husband and British Airways my daughter managed to book on a BA flight from Manchester to Heathrow and then on to Miami, finally arriving at her hotel some 21 hours after she left home that morning. I think her journey was worth it. Will she ever again try to fly US Airlways? I doubt it.
I knew that chemotherapy was a destructive process, but, until I started getting really low scores on tests for my white blood cells, perhaps I hadn’t realised just how destructive.
White blood cells are a significant part of the body’s immune defences. In effect white blood cells are the security forces of the body: when they pick up on an intruder of some sort, whether a germ of some kind or a bacteria, then the white blood cells spring into action either secreting antibodies or surrounding and devouring the bacteria. White blood cells have a short life typically existing for a period from a few days to a few weeks. If the body is on the alert because of an infection then there will be more white blood cells produced in order to deal with the intruder. Conversely, when the body is not under attack then there will be less of these cells. Chemotherapy kills white blood cells.
A low-level of neutrophils means that your body is less able to fight infection and so what would ordinarily be only a minor infection has the potential to have a disproportionately large impact with the possibility of disrupting chemotherapy treatment. In order to avoid this possibility my oncologist, Dr Tache, has recommended that I have a second course of Neulasta, and, once again, everyone has told me that it could be painful. They were right! I had some pain last time but it was handled easily with Tylenol and I thought the same thing was happening this time too, but, last night, the pain ramped up another level so that the small of my back feels as though bone is grating on bone. The Tylenol brings the level of pain down for a an hour so but then it starts to climb again. Sitting is painful. Standing is painful. Lying down is painful. I feel as though I would like to try levitation so that nothing is pressing on anything else. Anyone know of a magician willing to try this for me?
I wrote earlier about the dull background pain coming from my lower back as the Neulasta coaxes my bones into producing the white blood cells my body needs if it is to have a fighting chance of coming unscathed through this period of all out attack on its immune systems. Well I no longer have a dull background pain – it hurts!!
The problem really is a very simple one but, naturally, it’s not all simple. It’s easy to take pain killers such as Tylenol to dull the pain but I also keep running a temperature anywhere between 98.8 and 100.4 today, and, of course, if I take Tylenol that will reduce my temperature but not address the underlying infection. What is the underlying infection? I don’t know but I do have a sore throat again. We were undecided about a trip the ER tonight but are both so exhausted that a trip to the ER is the last thing I want to impose on us if we have any other alternative, so, I took a couple of Tylenol which have dulled the pain to somewhere around racking and I keep having sweats and feeling clammy. My hope was the Tylenol would bring everything under control but I don’t think it is doing and at the moment I can’t get sufficiently comfortable to sleep, so, here I am.
There’s a famous Buddhist monk named Thich Nhat Han who has written many books full of good ideas. The first of his books which I read started with the words, “If you are a poet you will see the sun and the moon in this page”. He went on to develop an argument for the creation of a new verb “to inter-be”, but he also developed a chain of causation about the page in the book. Without the sun and moon the tree which was turned into paper could not have grown. Without the men who felled the tree it could not have been turned into paper, without the parents, grandparents and great, great grandparents etc those children would not have been born and the tree would not have been felled. Similarly for the workers in the paper mill, the type-setters, the delivery drivers, the shop-keeper and so on. A whole chain consisting of many thousands of people over an uncountable number of years just so that I could stand in Waterstones that day and read those words. Amazing isn’t it! Well today I had similar thoughts about cancer treatments. I expect to live because some bright researcher came up with a solution. I’m receiving more than one drug so there are four times that number who worked on the drugs. Then there are the people who did the research on which these researchers relied in developing the solution and so on back I don’t know how many years. Then there are the parents, grandparents, great, great grandparents and so on. The animals on which I imagine the drugs were tested without being consulted and their families stretching back into the dawning of time. Sadly, there will also be patients who volunteered for trials which weren’t successful I imagine. Throw into the mix all those people who trained these researchers and their predecessors. The people who helped to fund the research and their families shouldn’t be forgotten either. Suddenly I don’t just have to thank my doctor and my family for the their support. Instead I need to thank untold millions of people and animals going back to the dawn of time for the life I will lead post-cancer.
Thank you to all those unknown beings for giving me life.
Yesterday was my second infusion, or the second part of my first cycle of chemotherapy intended to destroy the Classic Hodgkin’s Lymphoma which my body decided to add to itself. A landmark along the path I have to travel. There will be more but I’m just not sure what they will be yet. My hair is starting to fall out, so, I guess, going bald will be another landmark, and then, hopefully, maybe, it will grow back and that will be another landmark. The strange thing is that it seems only to be the grey hair which is falling out and this is leading to my seeming to have less, but darker, hair. My wife who has been saying that she can’t see the difference just looked at me said, “You’re right, your hair is falling out!” Very cheering!
I was full of positives as I explained to my oncologist, Dr Tache, just how pleased I was with all the things that hadn’t gone wrong as a result of the chemo, but, then, I got onto the occasional cough and the occasional tight feeling in my chest and we began talking antibiotics, and then Dr Tache was telling me that my bloodworks results showed a white cell count of only 0.5 which is very low. White blood cells are there as part of the body’s defences against disease and foreign objects and the number of them are an indicator of disease. In this case the disease they are losing to is the chemical concoction pumped into my body to save my life. Some disease eh? Anyway, as Dr Tache told me, “I have to knock you down before I can build you up again.” This led onto a discussion of how to remedy this, and Dr Tache’s recommendation was for an injection of Neulasta, a drug developed to deal with the effects of chemotherapy-induced nutropenia. Naturally, as this is a drug, there may be side-effects. Dr Tache said it will hurt. Audrey, the oncology nurse who worked with me yesterday, also told me it would hurt, and today the nurse who gave me the injection recommended that I take Tylenol before the injection in order to minimise the pain I am expected to experience as the nutropenia makes my bones produce more white blood cells than they otherwise would. Still, it’s better to have this done than to contract some infection and end up dying isn’t it? Anyway, so far, I’ve not felt any pain from this process, maybe tomorrow will be different, hopefully it won’t as I’m not keen on pain and I’d rather not pump any more drugs into my body than I have to.
The oncology room was pretty busy yesterday but was still full of the good humour generated by the nursing staff, Audrey, Lisa and Pamela, all of whom always had a smile and a word for all the patients. How they achieve this I really don’t know. There was one lady there whom I felt like telling to shut up and wait a minute after an incessant and repetitive questioning as to where Lisa was, as she, the patient, wanted her oxygen changing. The fact the Lisa had gone for the replacement cylinder seemed to have been lost on this lady. There was another chap there who was so desperate to get away that he was squeezing the bag to try to speed things up despite Audrey telling him that doing so could blow the pump which actually regulated the speed of the drip so that it got to his body at the correct rate. There was another lady there who, if I understood her correctly, was going through cancer for the third time and was incredibly positive and supportive of everyone else in the room. The lady I was sitting next to noticed that I was doing the “steering wheel tom-tom” on my chair arm to the rhythm of her pump and we laughed about how the sounds coming out the pump sounded so musically rhythmic – 1,2,3 & 4, 1,2,3 & 4. I know I’ve made reference to this before but, since joining this not particularly desirable “cancer club,” I’ve been more than surprised by the amazing positivity and good humour shown by all whom I have encountered, not only in the oncology room but also on the blogs. When I hear stories as I did yesterday, and read on the blogs about all that some bloggers are having to overcome or to deal, with I feel very humble and very, very, fortunate to have a curable cancer and the support of a loving family.
Something which struck me is on the blog byoldermanyoungerman talking about being depressed after being cured. Now that was a novel thought for me! I hadn’t got so far ahead of myself. Yes, I’m staying positive and am sure I will be cured but thinking of my emotional state in four or five months time I’d only thought I would be ecstatic. Like oldermanyoungerman it had never occurred to me that I might have “a confused feeling–almost as if my cancer has abandoned me.” Now I need to give that possibility some thought. I’m not sure that is how I will view it, but I can imagine feeling some kind of hole in my life simply because a lot of energy goes into having cancer, it’s never far from my thoughts, the physical effects of the cancer and the chemo are pretty much in evidence all the time and now I’m checking clothing and for falling hair. So I don’t think it will be exactly like mourning as oldermanyoungerman suggests, but more the absence of “a need to” do something. I will no longer be focussed on defeating this malevolent growth that arrived uninvited in my body. I have very little to compare that feeling to. The closest I can come is to go back to the first day after I had taken my finals for my B.Ed. It was a day I had been looking forward to for a long time. I remember it was a sunny day so I had taken a chair into the garden to read a book which I had been looking forward to reading for a long time. I sat in the chair and made myself comfortable.The sun was warm. The grass beneath my bare feet was cool and slightly damp with dew. Life was GOOD! My eyes started to work down the page. I read a couple of lines and then went back and re-read them, again and again. Eventually I had read a whole paragraph before having to go back and re-read it. Something felt wrong. Not with the book I was reading. Not with the physical circumstances, but, somehow, with me. I must have spent half an hour or so trying to read that first page and eventually the penny dropped. I realised that, for the first time in three years, I was going to read for pleasure and I’d forgotten how to do it. I could only read with a pencil to hand in order that I could annotate the text. Could only read with an intent to evaluate the characterisation, the plot, the style of the author and so on, but I couldn’t just read the damned book because I wanted to enjoy it! I suspect the correspondent quoted by oldermanyoungerman is correct in suggesting “I think there’s a huge rush of the tide to get you back as though nothing happened. To reassemble the picture that you had before,” That’s what I tried to do that day in the garden, to reassemble my reading skills just as they’d been before university, and it took me a long time to get over that and blend the old skills with the new. I need to remember that lesson when it comes to life without cancer.