sms post (No. 1)

I have devised a means so that it is now possible for me to post short blog entries from my mobile phone. Today’s post from a local cafe. (This short message posted from my mobile phone)

It could be worse

CT August 8, 2008

It is several months since I have posted. I haven’t felt inclined to tap the blogger’s keyboard, for several reasons, including a bit of lethargy and my usual tendency to wander off to new interests and distractions, but I may have also felt a greater than usual reluctance to put too much of my inner landscape up on the big board.

In the meantime, the main medical news that didn’t get published in this period was my decision, some time ago, to go ahead with the pemetrexed treatment and the first cycle commenced on June 11. There have since been two further cycles and late last week I had a CT scan to check progress.

Unfortunately, the scan showed continued growth and spread in the lungs and so this treatment has now been discontinued.

The oncologist’s recommendation is now to discontinue any further chemotherapy options for the time being and instead try a drug called erlotinib, which instead of acting as a general cytotoxic agent as chemotherapy does, targets something called an epidermal growth factor receptor in the cancer cells. I am now ruminating on this issue, but will probably commence this treatment in a week or two. The drug is administered by a simple daily tablet, there are some probably mildish side effects generally expected and again, this treatment is given an approximately 10% chance of significantly reducing the tumors.

Clearly the situation is looking increasingly perilous, but apart from pain issues, I am still generally in good health, with reasonable energy levels, good appetite and stable weight. My lungs do not yet seem very much, if at all, stressed by any increased lack of capacity.

Now coming to the inner landscape again, there is a lot going on and I am doing my best to understand and deal with my situation in all sorts of ways. This blog then is still active, no matter how minimally for the moment, and I hope to return to it more frequently sooner or later, and perhaps relate a broader range of views and experiences at this extraordinary time in my life.

Radiologist’s report follows below. The CT scan above shows the primary lung tumor and some of the new spots, but of course there are other slides from the scan that show the further spread in the lung and kidneys.

Radiologist’s report: May 8, 2008

After some difficulty and persistence I managed to get hold the radiologist’s report for the CT scan that was performed last week. It is not happy reading, although of course we already know the main conclusions from the consultation with the oncologist that I have already reported.

Not so good CT scan

Yesterday’s CT scan showed some quite significant growth of the tumors when compared with the last scan in October 2007. There are also a certain amount of spreading to new sites in the left lung which now shows several small spots something in the order of 1 mm diameter.

The original primary lung tumor has almost doubled in size when compared with the last scan. The mass in the right kidney has also significantly increased in size and it is now thought that this may be the source of the increasing discomfort I have been feeling in my lower back. The scan does not show any significant indications of cancerous activity at the 12th rib site of the original tumor that led to diagnosis in December 2006.

X-ray shows slight growth

My latest x-ray, obtained yesterday as part of my regular check-up with the oncologist, shows some slight growth of the tumor compared to the previous picture from late last August.

The tumor shows as a milky blob on the top right of the left hand rib cage in the image (my right side as seen if I was facing the viewer).

I was a bit shocked to see this. Although I realise that the growth has been relatively slow and it is good news that it hasn’t instead rampaged through my lungs, I would love to see it completely stable, or better yet on the way out. While of course this is officially regarded as extremely unlikely, my experience in meeting various people through the complementary support networks shows that long term survival is nevertheless a possibility.

At this stage, the oncologist still suggests to wait and see for the time being. He suggested that if my pain continues to develop in the lower back area, he may consider using radiotherapy for the palliative treatment of this problem but it is not an idea I am keen on at all.

I have also lost two or three kilos recently.

My next scheduled check-up is again in two months and this will also involve a CT scan.

Gawler follow-up

I have just returned from attending the five day follow-up residential program for people affected by cancer at The Gawler Foundation. Readers may recall that I attended the ten day program in July last year.

Unfortunately, on this occasion my experience of the program was somewhat compromised by a raging cold or flu illness (hereafter referred to as “flu”), that just seemed to hit a full head of steam as the program got underway. Consequently, I spent much of the time in the conference room dozing off or fussing with tissues and generally feeling extremely uncomfortable. For this reason also, I found my enjoyment of the food was was much diminished although it was still great to have good food provided without needing to worry about it.

I nevertheless felt that I gained benefit from attending, not only from the primary program material, but also from seeing again those who had also attended the July 2007 program and meeting new people who provided fresh inspiration and ideas.

There were two of us who had attended the July program who have been diagnosed NSCLC Stage IV and the prognosis for any Stage IV diagnosis is probably not very encouraging. In one of the program discussions, we talked about our experiences since last attending and it struck me that it was significant that we are both still alive and were able to return to the follow-up program.

One of the people I hadn’t met before is a psychiatrist who is intensely exploring what might be the emotional causes of her own cancer, the role of the mind in overcoming or living with the disease, as well as all the many various treatment options proffered by various practitioners of one school or another. Of course, her medical background gives her a particular faculty for exploring the literature. She fired ideas at me at a breathtaking rate about my own view of myself and other ideas to an extent that I found very stimulating and encouraging.

The material covered in the program itself was familiar, including for example, a chance to review dietary principals, meditation and other material presented in the first program. There was time spent exploring Gawler’s techniques of meditative contemplation as a problem solving technique and another meditative technique of exploring the sub-conscious mind that he refers to as “accessing the Inner Guide”. I found these exercises valuable and feel that if I may well benefit from further exploration of these techniques.

I had been taking some pain killers in the period leading up to the beginning of the program and had really been increasingly uncomfortable since my last report. I took a slow-release analgesic pill on the first night at the Foundation and was quite uncomfortable at that point, perhaps also to a greater or lesser extent as a result of the flu infection. I found however that I didn’t need any more pain killers for the remainder of my stay, as the discomfort seems to have somewhat melted away. At the moment there is some vestige of discomfort, but much less so than previously. The fluey symptoms are still with me but they too seem to have eased since yesterday.

All in all, again my spirits have been remarkably lifted by the experience and I feel a bit more confident to make decisions that may lay ahead.

Pass the analgesics

Over the last few weeks, I have had various levels of discomfort in my right lower back and to some extent up and down my right side. Sometimes it is a bit like the type of discomfort experienced when there is a small pebble in one’s shoe that can be felt through thick socks.

Sometimes pains shoot out into my right leg or over the larger area of my back.

It is possible that these experiences have affected my sleep slightly but lighter sleeping might also be attributable to the warmer weather.

I have been keeping a record of pain levels in a diary and have generally been marking them as in the range of 1to 2 out of 10 (where 10 is the worst possible pain). After peaking at about 2.5 it has in the last few days been a much more comfortable 1.5. My experience of pain now now is not as nearly as debilitating as when I was first diagnosed, so I am still ahead.

I’ve only taken pain killers two or three times over this period, so things are not too bad. I find that my daily Qigong exercices relieve the discomfort in the morning and that it is also often completely alleviated during mediation sessions, although I am often quite uncomfortable in the early parts of the session.

I note, for example, that I can climb the stairs to my 4th floor flat without any difficulty so the lung tumor does not appear to be impacting my lung capacity to any noticeable extent.

In such a circumstance of discomfort returning, there is a dilemma about when to scan and when to wait. Currently I am inclined toward the watch and wait plan and this will be reviewed when I see my oncologist in a few weeks times unless things get substantially worse in the meantime.

Happy new year

I spent the actual evening of New Year’s Eve in solitude away from Sydney and the massive crowds at Darling Harbour and I had only the company of various unseen bush creatures roaming around in the dark outside the house. I sat for a while in the country dark under the stars and watched the (quite unfamiliar) night sky for a while before retiring to bed and a deep, refreshing sleep. During my sleep I thought that I heard motorcycles and I struggled to regain waking consciousness. I am not sure whether I briefly woke fully but if I did all was quiet. The bike sounds may have just been a dream.

It seems appropriate at this time of New Year, and as a follow up to my recent survival anniversary post, to take a moment to express thanks to all those people who have helped me to get through, and even thrive, this first year of living with lung cancer. This of course includes those closest to me who have have contributed so much physical and intellectual support in the form of knowledge, ideas, cooking, cleaning, shopping, driving and other activities and resources, and much emotional support that has provided a firm foundation for hope and confidence.

I would also like to thank all those friends and acquaintances, some barely known to me or not known to me at all, who have taken time to express concern and support in one way or other, through comments here on the blog, emails, phone calls, visits and outings; fellow travellers that I have met who have been living with cancer and who offer a special empathy and inspiration; doctors and medical support staff including the chemotherapy nurses who provided calm friendly service in the discharge of their difficult and high pressured job; those at the Gawler Foundation who are working patiently to provide a more holistic and enriching approach to cancer management.

All this adds up to make living with this disease so much more approachable and each of these acts of support has contributed to my ability to do so.

This weekend I went shopping and was fairly effortlessly able to carry several kilograms of groceries on my back over a 4.5 kilometer walk on a warm day; the second time I achieved this feat during the past week. For a while I had stopped carrying such weights because of the pains that had somewhat re-asserted themselves in my back but clearly, although something is still going on there, it has lately become so minor as to not trouble me at all in expending this sort of effort. Here’s hoping for further abatement in the New Year.

One year later

Today marks the first anniversary of my diagnosis with stage IV non-small cell lung cancer (NSCLC). I feel very fortunate to have survived a full year knowing that the odds of doing so are not regarded as particularly high. It is great cause for hope that a further year can be accomplished and if so, even further horizons may lie ahead.

I would like to note here also, remembrance for several people that I have met or made contact with this year who have now died from their disease. Some of these people showed a particular kindness to me in the short time that I knew them.

It is good to acknowledge too that this year I have also met someone who has survived a similar diagnosis of lung cancer for over 15 years and resolve to take particular heed of her counsel.

My back discomfort continues, although sometimes seeming to abate almost completely, it has flared up again in the last few days. We saw a fun flick tonight being 2 Days in Paris and then later, as a special treat, had fresh truffle shaved onto fresh pasta in a butter and cheese sauce.

Oncologist says wait and see

Yesterday we attended a scheduled check-up consultation with the oncologist. There was no x-ray or other imaging performed. Lungs sounded clear. A manual inspection of my lower abdomen revealed no lumps or bumps. The slight discomfort in my lower right back was noted but not considered significant enough to warrant further investigation or therapeutic action at this stage. As I am otherwise very well indeed, the advice was to come back in early March unless any significant change in my health occurs in the meantime.

Earlier in the morning I also visited a GP to attend to some other minor health matters. He had a good poke around in my back and clearly located the recent discomfort as the site of my previously identified bone tumor and fracture on the 12th rib. Unfortunately this investigation flared up the pain rather badly for the rest of the day but it has subsided again to some extent overnight.

Since reporting the pain on my blog late in November, it has lessened quite considerably. It seems that I can often calm it quite easily through mediation and relaxation. I think that my mental attitude to it has relaxed a little too, perhaps helped by having spent some good quality time in the bush focusing very much on my routine.