Wednesday, October 28, 2015

Countdown to chemo

Today I start my chemotherapy treatment, ready as I'll ever be to combat this disease and reclaim the health until recently I took for granted. This piece explains some of the steps along the way as I prepared my body and mind for what lay ahead.


The week before treatment started would be a flurry of tests as we sought to work out just what we were up against. The latest in diagnostic science would analyse every part of my body in every way to find out whether the lymphoma had spread to elsewhere. Regardless, the treatment would be similar through the chances of success less certain.

First up was the PET scan – as the internet explains, a positron emission tomography (PET) scan is a type of imaging test. It uses a radioactive substance called a tracer to look for disease in the body. Canberra has just one PET scan machine, and thankfully on Thursday morning it was at my disposal.

I happily admit to my support for all things nuclear, a source of science that has brought great positives to the world even as human have used some of its potential for ill over the decades. But the prospect of having a radioactive substance injected directly into the body gives some pause for thought. For a moment I squirmed at the notion, but then thought of the greater good to my health, for the short term at least. (The long term implications remain to me seen – the dosage of radioactivity is pretty hefty, and repeated exposures over the course of a lifetime could do lasting damage. It’s a risk I will have to take.)

Under the care of the nuclear medicine specialist I lay back in an armchair as a cannula was put in my left arm. For 20 minutes I sat back in darkness, my body nuzzled in warm towels as I drifted towards restfulness. Bliss. Then the specialist returned and a tube from the wall was hooked up to the cannula.

A soothing voice gave me a gentle warning that the tracer was now being injected, and it might feel a bit cool as it worked its way through my body. The fluid now entering my veins was a radioactive glucose, prepared at the Lucas Heights nuclear facility in southern Sydney. Regular pulses injected the glucose for about a minute as I continued to recline in the armchair, surrounded in darkness.

Slowly I felt the repulsive goo work its way through my system. The liquid felt thicker than my blood, gradually crawling up my left arm to my shoulder. It was dense and heavy, slightly cool, alerting me to each new part of the body that it reached. Then it spilled around the heart and hit the neck and throat. It felt like it was taken extra time to fill around the mass in my throat. Gradually it crawled to my temple, then to my right side and down my arm. Eventually my groin and legs were enveloped and I was entirely irradiated.

For nearly an hour I lay back as my natural circuitry spread the foreign object throughout my body, mixing with my blood so that it was even throughout. The sensation remained sickly, but I cannot tell if it was genuinely because of the nature of the fluid inside me or because of some psychological repulsion at a foreign object being so intimately incorporated into my being.

As my eyes grew heavy and I neared sleep my slumber was broken by a specialist telling me it was time to move to the next stage. I roused myself from the comfy arm chair and headed to the scanning room, where the images would be taken.

I was laid down on a platform, some support offered beneath my knees and a brace around my arms to keep them in position. The machine takes hundreds of images, some of them as tight as three millimetres from the next, so squirming around can significantly undermine effectiveness. Instead, the best thing is to be as still as possible as the images are being taken. Being in a deep dose certainly
helps.

Once I’d settled on the platform the specialists left the room and the machine was ready to do its thing. The platform slid through a vast metallic doughnut, able to capture images from all sides. Slowly the platform would slide me from one end to the other, pausing regularly for shots. Heavy mechanical sounds told me that there was plenty going on inside the machine surrounding my body.

Most of the time I kept my eyes shut, although on the odd occasion when I opened them the machine was unnervingly close. Were I prone to claustrophobia that might be a worry, but thankfully I was happy just to shut my eyes and zone out.

Twenty minutes later the kindly specialist came in to inform me it was all over. I was free to step up and take a seat in the waiting room. A cheese-and-tomato sandwich and an apple juice, the first things I’d eaten all day, were on offer. I browsed through a copy of an outdoor living magazine, the active adventurousness it advocated seeming almost pornographic given my state of mind and body. Still sleepy, I was wheeled back to my ward to await the outcome a few days later.

Other tests were not quite as dramatic. I had a CT scan on Friday at another site in an effort to gain further information on the spread of disease. Again my body received an infusion, this time of iodine, and I images were taken from all angles. But this one came acropper when it emerged that my body had not recovered from the biopsy surgery a week earlier and I had excessive amounts of oxygen circulating in my body. This oxygen, a nasty combination of a pneumothorax (gap in the lung) and subcutaneous emphysema, was messing with the test.

Clearly the results was causing concern for the routine operator conducting the test, who contacted his supervisor. As I lay flat on the CT scan bed he approached me and asked a rather unnerving line of questions. Had I been in hospital recently? Had I been in a fight lately? What was really going on?

Turns out the gap in the lung was a similar symptom to that experienced by many people who have recently copped a blow to the chest, and created a wave of suspicion that I had been involved in foul play. In my slightly addled state I informed the supervisor of my recent health travails and the biopsy surgery a week earlier. This appeared to satisfy his curiosity, and after consulting with my cancer specialist at the hospital he advised me to visit him that afternoon for a check-up. Fair enough. The MRI scan planned to follow immediately afterwards would need to be put on hold, he explained, because the images would not be much use.

I also undertook a bone marrow biopsy. It was a process I was warned would be quite painful (one person made a comparison to childbirth) but in the end was rather tame. Perhaps that was the impact of the mild sedative and the local anaesthetic. In the end I was I only gently moaning as I lay on my side while a pair of friendly medicos ground into my Iliac crest at the base of my spine to extract the requisite marrow. The mild pain was further relieved by the enthusiasm of the technicians at the quality of the sample they had extracted. We’ll know the outcome in a few days.

During the week ahead of chemo Melanie and I were forced to face the vexing issue of the risk of reduced fertility, or even sterility, given the chemicals used in the treatment process can do lasting damage. When you’re facing a personal existential challenge just getting to the other side is often objective enough but it’s nice to know that things can be done to preserve quality of life. To that end, we were encouraged to work with a fertility clinic to bank some semen should we (or indeed I) want to access it later on. The wisdom of this approach had been advised to me by others, and it was one we decided to follow.

Each step of the way through this whole process our hands were held by the incredible people at the Canberra Regional Cancer Centre. I don’t wish for this blog to be some morbid “review” of the place, ranking alongside Chinese takeaway on Yelp (“nice atmosphere, great service and I left without a single tumour! Three stars”) but I do want pay tribute to good care when I get it.

In the days ahead of chemo, the doctors and nurses have been a great source of knowledge, support and care. It is comforting to know that whatever arises they have it covered.

A chemo education session told me much of what I needed to know about what lay ahead. The mix of drugs that would be injected into my system would be tough and run a significant risk of adverse reactions. But there drugs to combat those reactions and my health would be monitored closely each step of the way. All sorts of things that had once seemed innocuous – being with a group of people, eating unpeeled fruit, flushing the toilet – now needed great extra care. And I needed to listen to the signals my body was sending far more acutely than I normally would. But regardless, I could get on with life, exercising, enjoying good food, even the occasional tipple.

When it comes to administering the drugs, the doctors decided to establish a PICC line (a peripherally-inserted central catheter). A nifty piece of medical science, this tube would enter my body on the inside of my left elbow and extend all the way up my shoulder to a vital area near my heart. It makes it easier and safer for the drugs to circulate through the body without me needing constant needle pricks and the risk of some of the smaller arm veins being overwhelmed by the drugs.

At the exit sits two tubes which can be used both for fluids going in, most often the chemo drugs, and bloods coming out as required. Once it’s in, it can stay there for months and beyond. Given the pocking and prodding I’d had over the past two weeks, a long-term solution seemed like a good one to me.

With the deft touches of people who have done it many times before, a pair of medicos lay me flat while they rubbed a gentle anaesthetic on my arm. Guided by an ultrasound they found the pathway up one of the veins of my arm and methodically passed it through. Given no nerve endings sit on that part of the body, the pain was minimal. A few days later a slight feeling of tightness remains in that arm, but that’s probably inevitable given the object now inserted in my body. I suspect in coming months that PICC will become my friend, and lifesaver.

Over the course of the week it has been tough to find moments of great mental clarity. On paper, the time before the chemo drugs are administered should be one of clear thoughts and plans for the future, but the reality for me has been a bit different. The lingering effects of the biopsy surgery a fortnight earlier has left me with some breathing difficulties, the pressure put by my tumour on the superior vena cava of the heart has required a steroid, the bone marrow biopsy has left a dull pain in my lower back, my body is battered and bruised from injections and the PICC line in my left arm has taken some getting-used-to. All up, I find myself so focused on the aches and pains of my body that readying myself for the next stage is tougher than I’d hoped.

But regardless, a PICC line inserted, my head filled with the medical science of treating lymphoma and the final test results on metastasis coming down the pipeline, I am ready to take the plunge into chemo. I do so with a mix of enthusiasm and anxiety, but comforted by the fact I am among a great number. Today I will head into the Cancer Centre, be dosed with drugs to see how my body responds, and slowly return to the health I once took for granted. Wish me luck.

The PICC line running up the inside of the arm should make treatment a whole lot easier.


5 comments:

Anita Frayman said...

We are thinking of you and we hope that today goes smoothly for you. We wish you well soon, lots of love Anita and Peter xx

Jonathan Cohen said...

Thinking of you a lot bud and wishing you every success at that this be as easy and comfortable as possible.

Anonymous said...

Wishing you all the best Ari. Chemotherapy is mind over matter in many ways and you have put your mind to alot of ventures with great success. You are one person to look up to. Keep writing.-Robert.

Margot said...

Ari,

This is a big deal. I'm not sure if there is anything I can do, but if there is anything you need me to do, please ask. Have done this thing with a few family members. F-in-law going through it now. It's tough.

Margot

Anonymous said...

Best of luck Ari. Thanks for sharing your bravery and journey! Lera