Sanity and Hope Restored

 Sanity and Hope Restored

 

This has been a tough week, perhaps the toughest since the initial weeks following the discovery of the tumour. We have struggled emotionally. Thankfully our wonderful oncologist and his splendid nurse practitioner were able to restore our morale earlier this week. We cannot be sure, but there is a good chance that the immediate slope from here can be an upward one.

 

Three weeks of radiation therapy finished this week, while the chemotherapy should also be doing important things inside my body, even if I don’t notice anything. The side effects from both treatments have been milder than before, with mimimal nausea and only some loss of appetite to handle. After a couple of weeks my hair started coming out, neither unexpected nor unwelcome. It was all going quite smoothly.

Then last Thursday a new symptom appeared and quickly become quite serious. It started with numbness in my left hand but soon spread to all of my left side. It felt like I had transitioned from a fully functional human being into a dependent invalid within a few short days. There was no quality feeling on my left side, so my movement was unsteady and prone to falls, though I managed to avoid any, somehow. The worst part was that the simplest of tasks involving some input from my left side became very hard. I could not dress myself, could not trust myself with an object such as a sharp knife, was tottering around the apartment and needed help at the toilet.

 

I expect it is hard to imagine just how humiliating, shaming and especially frustrating this become. I was not comfortable but could not safely move. My wife was wonderful helping, but her specific skills did not really cover the situation and I took some of my own frustrations out on her.

 

On Saturday evening I managed to cantor mass, somehow, despite needing help on stairs and having to secure myself whenever standing. Then Sunday mass with my professional group was even tough, a possible fall lurking behind every maneuver. Later that day I received the kindest firing letter ever, and it was a relief; I had no wish to embarrass myself and others through that experience again.

 

Through the weekend the condition continued to worsen. We adapted well together and avoided disasters, but then our minds took over. Was this permanent? Would it get even worse? If so, could I be left safely alone? Will be forced to rethink all of our plans? Was this the beginning of the end?

My Monday radiation was in the morning for a welcome change, and afterwards they wisely held me back to see a nurse. That started a process which led to taking steroids, and noticed a slight improvement.

 

Nonetheless we attended our regular oncology consultation on Tuesday morning in a state of high anxiety, both consumed by negative scenarios flooding our heads.

 

We were making the oldest mistake in the book, though of course it is very hard to avoid under such emotional pressure. We had been told clearly to expect a wide range of temporary, and a few permanent, side-effects from radiation, yet by Tuesday we had almost ruled that out as an explanation for my left sided weakness.

 

Fortunately, the nurse practitioner started to put us right, and the neuro-oncologist finished the job. It seems that a side effect of one sided weakness is quite  common during radiation, and, even better, a short regime of moderate steroids would probably sort out the problem. That was the moment we started to be able to escape the doom loop and to restore sanity and hope. And, sure enough, while there have been more bumps in the road, we can smile again and hug again and feel optimistic again.

 

I suppose the big question is why we have to make the mistake of entering the irrational doom loop? Can we aoid that next time? Perhaps marginally, but I doubt much more than that? Why not, since it so obvious? Because we are human beings.

 

Another universal, sods law, had more to say as the week progressed. First we had to pay a large bill for the car. Aaaaaaaat least our car mechanic is a saint. The, on Wednesday, I did my thing, as I do most days, of knocking over a cup of hot tea. This time I succeeded in a direct hit on my lap top keyboard and pad area. It is currently sitting in rice and we hope it might resurrect. If not we know exactly where to go next. It is lucky that our mood was lifting, otherwise that incident could have thrown us back onto the floor.

 

Last night we had a lovely meal out with close friends and that restored our sprits further. My appetite is now being bombarded by two opposing forces, and the steroids are starting to win, so I could enjoy my French meal extravagantly. Hope is never far away, after all. And kindness and thankfulness unlock it.

 

Are there any lessons from this week of challenge and its aftermath. Trying to avoid doom loops must be one. Being ready to ask for help when you need it is another. Accept the steroids with grace when you need them is a third (though I am sure we will be advocating a taper very soon).Another lesson: if you are warned of multifarious temporary and permanent side effects, then don’t leap to the conclusion that a symptom is certainly a side-effect, nor a conclusion that it certainly is not

Simpler, clearer, better - but also new needs of acceptance

 Simpler, Clearer, Better – but also requiring Acceptance

 

Seven short weeks ago we were in Portugal, enjoying a relaxing and peaceful time with blissful walks and lovely meals. We still had the lovely weekend in Brighton ahead of us, a time for singing and family. After that we returned to New York. Since then, much has happened.

 

We suspected we were returning to face a period of uncertainty, after my scans had taken a worrying turn during the spring. As it turned out, July would include an operation, four more scans, many other tests, long phone discussions with experts, and even a day trip to Boston to consult a different brain cancer guru. The whole month felt like a change of pace, including more urgency and packed with uncertainty, but behind it all lay the need to accept a change in my situation. Barring an unlikely miracle, our dreams of a long respite would have to be shelved. Now, the cancer was winning, its effects were creeping closer, and perhaps the best we could hope for was to hold it at bay for a while longer.

 

Inevitably, we found several aspects of our July experience quite tough. Each scan result or consultation required some time to process and forced us to come to terms with a new reality. We were incredibly lucky to have so much dedicated effort on our behalf from such impressive experts, and their candour was also welcome: still, each time we had to come to terms with the implications. There was an operation to recover from, and that involved further intake of steroids, which as usual adversely affected how I behaved with my wife, inflicting additional strain on both of us.

 

Also, while information was always welcome, the path forward remained uncertain. The experts made it clear that in this phase of response to cancer, patient input became more important. This was a clear message to us, and something else that required processing together. Choices would mean trade-offs. Eventually those trade-offs would becoming difficult, such as deciding how much we valued a prolonged life when that life might be painful and put strain on carers. We would need to face those choices together, while their impact on each of us could be very different.

 

Some relief became available at the end of the month. Firstly, my daughter arrived for a visit of a week, 32 weeks pregnant. The three of us had precious times together. Around the same time, all of the medical inputs somehow converged into a clear plan of action, and much of the uncertainty lifted, at least for a time. The window for surgery was probably closing, unless for a very specific purpose such as draining a new infection. Medical trials remain possible, but unlikely and with very uncertain value, and that window would close quickly too.

 

However, new treatments were available and potentially valuable. A specific fifteen-day course of radiation therapy, combined with cycles of a different oral chemotherapy, seemed to make sense. We could keep an immunotherapy, and maybe even a trial, up our sleeve.

 

This burst of simple clarity was very welcome, even though it required yet more acceptance of a reality without much major upside. I duly started the two new courses during last week. So far neither have resulted in the side effects I have become familiar with: I have experienced no itchy rash and almost no nausea either.

 

Even so, fate dealt us a new dose of reality at the end of last week. On Friday afternoon I suffered an extended bout of disorientation. I was at times confused, found it hard to locate and read signs, and lost some dexterity. Fortunately, my wife was with me for the entire episode, which may well have saved me from falls or other serious mishaps.

 

This new development is clearly of concern. At least it passed and has shown no sign yet of returning. It might have been a reaction to a specific circumstance, such as the new treatments. The symptoms had similarities to seizure activity, which is something I can protect against through medication.

 

As always, there is much to celebrate and be thankful for. Memories of June and family visits are fresh and comforting. The resolution of the phase of uncertainty into a clear treatment plan is a relief, and that treatment has been easy to tolerate so far. I can still read, and write, and sing, and pray, and much else besides. We have reconnected with our old-folks home. The episode, scary though it is, did not cause catastrophic damage.

 

Perhaps most comforting to me, the new clarity has made another choice more clear-cut. It has reinforced my desire to relocate to Europe, and soon. This choice perhaps carries a few medical risks, and is certainly tougher for my wife than it is for me, since for her the consequences will take more time to emerge and then will linger for a long time. Our shared parallel journeys to different destinations come into ever sharper focus. Thankfully, the last month, with uncertainty resolved, has helped us to reach new levels of acceptance and readiness.