I had a call this week from the oncologists office which said, “Your PET scan was OK”. Naturally I experienced a wave of joyous elation before I thought, “OK. What does ‘OK’ actually mean? Does it mean simply that the results were technically acceptable? Does it mean the cancer is at the stage it was expected to be at? Does it mean the lymphoma has gone? Does it mean the cancer has gone?” So, I asked the question, “What do you mean when you say it is OK?” There was a pause at the other end of the line while the person who phoned considered how to respond, before saying, “I’ll just check.” When she came back the news was that the results showed no mass. Wooo hooo. Now I just want confirmation from the oncologist that that means what I hope it means and then discover whether I have to continue with chemotherapy for a further period.
Monthly Archives: April 2012
It has been quite a long time since I posted here, and that has been for a few reasons.
The first is that there’s been little or nothing new to say. Maybe this is why so many cancer blogs just seem to be left hanging in the air; the bloggers simply tire of writing the same thing and eventually stop doing so until things change and then have got out of the habit of posting.
The second is that I’ve been so damnably tired. There have been times when I have literally crawled up the stairs on all fours simply because I didn’t have the energy to co-ordinate the process of standing and doing so on two feet.
So, what has changed in my life these past few weeks? Well I suppose the first thing to look at is the medical record. My health insurer refused the MUGA scan but was willing to agree to an echocardiogram but the process of doing so meant that I couldn’t go for the echo test until three days after my next appointment with my oncologist, so I will now have to wait until the middle of next week to get the results from that. Other than that absolutely nothing has changed, except, as mentioned above, my levels of fatigue continue to grow. There have been days this past week when I slept for 18 hours out of 24 and was still tired during the remaining six hours. This fatigue is beginning to have an impact on family life as I am simply not around to join in and on top of this my wife is struggling very badly with an allergy which means she can’t spend more than 30 or 40 minutes in the house without a violent reaction and is having to sleep in the car at night, and I’m simply not awake/alert enough to be much use in giving her much support in her battle. We’ve had the experts in to check things but they can’t find a mold source. It’s been suggested that it might be in the A/C but we’ve been told it’s not in the A/C. An air sampling test indicated higher levels of mold upstairs than downstairs – not much higher but still enough to suggest there may be a “mold reservoir” but we’ve no idea where it is and we’re waiting for the insurer to give the OK for the specialist to carry out more tests even though he had no real idea of where it might be.
At the minute life just isn’t much fun for any of us, but we’re keeping on, and, eventually we will come through the other side.
So I went for my Peak Flow Test and according to the technician all my results were within the normal bands, but, of course, he’s not the specialist and the specialist may see something he didn’t. So, it looks as though the bleomycin hasn’t had too much impact on my lungs, which means that the chest irritation I’ve been getting must be from something else.
No news as yet from the health insurance company about my PET scan and MUGA scan but then why should I expect one, I mean it’s only a week tomorrow since the request was made! I don’t understand the manner in which the health insurance companies work. My wife showed me an article this last week in which a parent had been directed by their doctor to take the child to an emergency room. At the emergency room the child was treated as an emergency. You’d have thought that was prima facie evidence of an emergency wouldn’t you. Not so! The health insurance company subsequently decided that the situation was not an emergency and was therefore not covered by the insurance policy!! As Terry Wogan was wont to say, “Is it me?”
I’m rediscovering how little energy I have to spare. This weekend we’ve had family around and just having people around me seems to suck huge amounts of energy away from me – it’s like having black holes in the room but instead of sucking in light they suck in my energy. It’s somehow as if the need to keep changing focus from one person to another is a tiring task. Then there are the problems in listening. Again that becomes an energy-consuming task. People moving around the room also attract attention and that too draws on my energy. All these things which for more than half a century have been automatic functions now seem to require a level of thought and concentration which I find amazing.
Those were the words of my oncologist Dr Taché yesterday before the start of my third cycle of chemotherapy. The suggestion is that, perhaps, what Dr Taché was able to feel, is the healing of the incision from my biopsy. It’s difficult not to get excited about the possibility that maybe, just maybe, the Hodgkin’s Lymphoma has been killed but the reality is we don’t know, and as Dr Taché was quick to point out we need scans to know what is going on. I suppose the lymphoma could have shrunk and be hiding beneath, or perhaps even within the biopsy healing, so at the moment I’m working hard at containing my excitement as I would prefer continuing darkness to a false dawn at this stage.
In the run up to yesterday’s appointment I’d been experiencing both daytime cold sweats and night sweats for the previous four or five nights, both of which I associate with the onset of the cancer and its development from Stage 2 to Stage 2B. In addition I’ve had sore throats and tightness in my chest, coughing when breathing deeply or encountering cooler/moist air. I’ve also been feeling shaky several times a day, and from time I’ve been getting hand tremors: it’s this last which I’ve had most difficulty in accepting with any degree of calmness. So to find that maybe, just maybe, the lymphoma has gone may be a great relief, but only if it actually has. Anyway Dr Taché’s office is now involved in the usual discussions with our health insurance provider to get approval for the scans, and so there’s the tension of will they approve them or won’t they? Clearly time is of the essence as I need to have these scans done and the results evaluated and back with Dr Tache within a fortnight and I know that the last time we went through this it was touch and go. Of the scans the most important is probably the one which will reveal any damage to my lungs from the bleomycin as there is the possibility that the cough etc are the result of damage from that drug. If there is excessive damage then the bleomycin will be dropped from any future treatment – hence the need to get the results before the next infusion. It won’t be replaced by any other drug. The protocol says to just carry on with whatever other drugs are being used so that will be AVD instead of ABVD.
How do I feel about all this? On one level I’m trying very hard not to feel anything in case it turns out that although the lymphoma has shrunk it is still there in hiding, or that the sweats indicate that it has metastasized and we should be looking somewhere else, in which case the treatment may not be working and we might have to change treatment which I think would be a huge blow to my moral. On another level I am desperate for good news. I know that the infusion before this one has caused me to react more strongly than any of the previous ones and I therefore want to believe that it is kicking the lymphoma as hard as it possibly can, but, another part of me thinks that maybe, just maybe, the lymphoma is fighting back and causing the effects rather than them being side-effects of the chemo. I don’t know what to think really. Maybe I’m like a young child on Christmas Eve, knowing I’ve been good all year and hoping that I’ll get that brand new shiny bike from Father Christmas but aware that it costs a lot of money and that not all little boys can get everything they really, really, really want just because it is Christmas.
Those of us of a certain generation will remember the words “two out of three ain’t bad” from the Jim Steinman lyrics performed by Meatloaf – if you don’t then click here. The singer is talking about being able to want and need his girlfriend but says he can’t love her. That’s not the two out of three I’m talking about. No, my three are the three good days I get in every fourteen after my chemo infusion. It works out to be Saturday, Sunday and Monday of my second week, and I really look forward to them, as those three days are the ones when I can have a conversation with someone and follow it all the way through rather than suddenly having my eyes glaze over as though I’m Penny listening to Sheldon’s explanation of his work in The Big Bang Theory – yes, I really do get that bad a glazed expression and that’s only from the inside. If the conversation is with my wife then that’s when I see the “I love this man” look come into her eyes as she says, “You’ve gone again haven’t you?” These are the days when I can watch t.v. and follow the plot, the days when I can do simple physical tasks like standing up or washing the dishes without feeling as though I am planning some kind of Arctic expedition. In short, these are the days when I feel GOOD!
Yesterday was the first of those days and I really did feel good. So good in fact that my wife and I took a picnic to out local park – I was so excited! No, really, I really was so excited. I mean I didn’t have chemo brain and I felt as though I didn’t have chemo body other than the caner in my neck. The park was good and I felt up to taking on the challenge of walking around the lake. I knew it would take time but really thought I’d be able to make it. I’d taken my camera as well as it’s a while since I was there and the vegetation and light changes so much that you never know what you are going to see. Well, the first thing I saw after stopping to take my first photograph was that I couldn’t hold the camera steady. My hands were subject to tremors. I’ve felt them before when I’m at the keyboard, but, there, they hardly seem to matter as I can still hit the correct keys or I just delete and do it over again. With the camera it was different. The tremor threatened to stop me achieving something on a day which was fore-ordained to be a day of achievement. Anyway thanks to Mr Nikon and his digital team I eventually got a blur free photo so we set off to walk a little further. We didn’t get much further, maybe twenty yards or so when I could feel all the energy just draining from my body. I knew that I could make it back to the car park but I didn’t know that I could make it all the way round the lake to get back to the car park, so we turned around and slowly returned to the car. Next was a stop at a store. I had to leave and take refuge in the car after about ten minutes. Next stop was the library where I had great hopes as I’d been re-fueled on my wife’s return to the car from the store. I really enjoy libraries. I wanted to relish being able to range the book shelves. I wanted to delight in perusing the books until I found something that would be accessible to my chemo-impacted brain next week. I burned out after two or three bookcases. So, that was Day 1 of my three. Not totally successful but a good day. I didn’t achieve everything I set out to do but I achieved more than I would have done had I sat at home.
Day 2 is today and I paid the price for the energy I expended yesterday. My brain has been working but my body has been running on empty, or at least it was until I had my mid-afternoon power-nap. I sleep for 30 to 60 minutes and feel as though I’ve slept for hours. 30 minutes later I want to sleep again but can’t. Anyway the afternoon went in watching Spurs beat the Swans 3-1 at The Lane and watching some delightful football played by both sides. Hopefully this will see our wobble at an end and then we can get back above The Gunners. After that I actually enjoyed the meal my wife prepared for us. I mean enjoyed – for the first time in almost two weeks I could taste nearly everything on the plate. There really ought to be some nutritious product which requires no taste to be injected (and therefore reduces the price) which we could eat when our taste buds are being beaten out of shape by metal mouth. That was followed by a session on You Tube where I was showing my american wife some of the programmes I watched as a toddler and into my teen-years. Here’s Andy Pandy from before I was born but I don’t remember any real differences. I remember my friends coming to my house to watch this as we were the only house with a t.v. at that time. We weren’t rich – it was a second-hand set which only showed programmes from the BBC and the picture quality was truly, truly awful. There was also Bill and Ben The Flower Pot Men. A little later on came Captain Pugwash and Noggin the Nogg which I seem to remember going to my friend Jackie‘s house to watch as they had a new t.v. which showed both BBC and ITV. Last of all was the phenomenal cult success of The Magic Roundabout. For those of you not in the know, The Magic Roundabout was actually a French programme purchased by the BBC but given a totally different story line by Eric Thompson. Aimed at young children this was favourite of my friends and myself at grammar school, and of university students throughout the land. The day’s not over yet, so, obviously, there’s still time for something to blow apart my smug complacency that today is another good day, but I don’t think it will.
Tomorrow will be Day 3 and I have no idea whether it will be a good or a bad day, or just something in-between. I hope it will be a good day and let me get my hat-trick as it were, but, if not, I’ll just have to remember “two out of three ain’t bad”.