Monday, 28 November 2011


At 7:00 a.m., I’m rolling up my sleeve for the blood technician.  I’ve spent the night tossing and turning, and manage under two hours of solid sleep – and now I have a two hour wait to see the oncologist. Wendy and Heather show up in the waiting room at 8:45 and Terry, the oncology nurse herds us into a small examining room. 

The usual questions are asked and answered. Any numbness or tingling in my fingers or toes? Problems with nausea? Ringing or buzzing in my ear? Nausea? Any repeat of feeling light-headed and faint?

Dr. MacNeil arrives and checks the results of the blood work. Once again, my immune system is not good enough for chemo, which means that on Wednesday, I have to go in two hours before my scheduled chemo for another blood test. If that one is okay, round three begins.

She shows us the X-rays of my lungs. The tumour is getting smaller. Not a lot smaller, I think – but Wendy says there’s a big difference and the Doctor tells me it could have grown, in spite of the treatment – so she’s happy with results so far. As far as my crappy reaction to the last round of chemo and steroids, she tells me I’m in the 1% group of patients who react that badly. Tough luck. Down some Ativan and suck it up. She doesn’t say that. She explains that I will be hideously sick if I don’t take the meds. There’s a reason that nurses used to call Cisplaten, “Cisflatten.” It’s a vicious drug. 

The radiation oncologist, Dr. Bowes, calls me in the afternoon.  Radiation will not begin until the fourth round on December 21.  And then it will run for fifteen days, with the exceptions of holidays and weekends. Meanwhile, a cast of my back will be constructed and my chest will be tattooed so that I can lay in the cast in the exact same position for each session.  The tattoo will allow them to direct the laser to the precise spot. And by the way, I’ll need another cat scan.

 I mention that often radiation is used in palliative care and I ask, “The chemo kills the DNA of the cells, right? So exactly what is the radiation supposed to do.?  He agrees about the palliative care but explains that radiation also stops the cells from spreading. What? I mean isn’t the idea that chemo kills the tumour?

Apparently they hope so but there are no guarantees. Dr. Bowes explains that with neuroendocrine cancer, there is the possibility it’s already spread to other areas than the brain – but is not detectable on scans. That is why, he says, they are treating it as aggressively as possible – and why they will be following up with X-rays and scans on a regular basis. 

On the up side, he isn’t expecting I’ll have terrible side effects from the radiation on my chest. Fatigue, maybe a rash, trouble swallowing. “But we can address some of that if it happens,” he adds. He reminds me that after a break of a few weeks, I need to have another two weeks of radiation on my brain – just to make sure nothing of the tumour remains, lurking out of sight of the scanning equipment. 

So, to sum up: Christmas Day, I will be still be on steroids. However (Merry Christmas)…it will be the very last day I have to take them.  I should be finished treatment, sometime  in February. 

That is, I will be finished until the next X-ray, the next scan and the next and the next. 

What the hell, how much fun is life if don’t have to constantly wonder whether you’ll have one? 

If this doesn’t teach me the fine art of staying firmly in the present, nothing will!


Jack said...

"What the hell, how much fun is life if don’t have to constantly wonder whether you’ll have one?

If this doesn’t teach me the fine art of staying firmly in the present, nothing will!"

That's one way of looking at it. Using it to reinforce your determination is another. OK, the two aren't at all mutually exclusive. I hope that you can find that well of pig-headedness inside, you know the one I mean - we all have it. Or is that just me trying to feel better about myself? :)

On another note, this obviously won't be a normal Christmas for you, but if it were, what would you be doing? How would you like to spend it next year, once the treatment is over?

Brian said...

Tumor shrinkage of any kind is a great sign! I know the radiation and chemo 1-2 punch sounds like a lot, but for your type of cancer, they are justified in it's use. Chemo is often toxic to both your natural cells and the cancer cells (we're working to change that now), but radiation is destructive only to dividing cells. Since cancer cells divide at a much faster rate than your native cells, the cancer is much more susceptible to being killed by the radiation. Thus, if they can keep the tumors from growing (via radiation), the chemo can do it's job that much more effectively.

You might want to ask your doctor about the CyberKnife radiation technology. It shoots a beam of radiation through you at low dosage, but revolves around you, moving through all three dimensions, having the tumor as the center point of all three axis. The end result is that most of your body ends up taking the radiation equivalent of a couple X-rays and the tumor gets hit with an atomic bomb (figuratively) of radiation. It is often used for inoperable cancers and would be worth looking into, if it fits into your health plan.

We're still praying for you to get better and better with each passing day. Have courage,as the tide of the battle seems like its beginning to turn.

Howpublic said...

Brian, I wish my radiation oncologist had told me that. He's a great guy...but consultations are short and there's always the element of knowing so much that you forget to explain the obvious to the patient, I guess. I will ask him about cyberknife.
I'm glad I wrote to them all, still..because at least it may indicate to them how much confusion I feel when they don't explain more fully. Thanks so much for explaining this to me.

Jack...My inner pigheadedness is in there somewhere. Just feeling a little daunted by the lack of information and confusion over what I'm being told.

Prayers greatfully received, thanks.