My body is a haunted house.

One of our parishioners, as she goes through chemo to deal with a lung tumor, told me recently “I am more and more tired. That worries me.”

I smiled. “This is normal. The effects of chemo tend to accumulate from one cycle to the next. I was literally dragging myself during my last three rounds.”

I discovered this in April – everything was getting harder to do, as if I was moving on a different planet on which gravity would have been more powerful than it is on earth. 

The assistant of my oncologist confirmed it. “Yes, fatigue accumulates. You get more anemic." She thought for a moment. "Maybe four chemos would be enough ?" My reply came fast. “No, I want to go through the six ones. I don’t want to cut corners. I visit dying patients everyday at the hospice house, I want to put everything on my side not to become one of them.” She did not insist.

The rhythm of chemo became predictable. On the day I would receive it, I would enjoy relaxing in the comfortable armchair in the big room where nurses were providing help with the IV. I would look for the ottoman on little wheels where I could put my laptop on, near a plug. I would stroll on facebook and the internet in between naps.

That night, my body would become a haunted house, with strange cold drafts coming and going along my limbs. On the next day, I would receive a shot to boost my white cells. This would make for a bad day, two days later, with flu-like symptoms and sore bones. I would feel better the next morning. Then there would be a few days of almost normal life until fatigue would catch up with me on the last days of the round.

By mid-June, when the last cycle ended, I was hoping for a sharp contrast, an immediate relief, since I was done. It came very gradually. I kept checking on my reflection in mirrors at home. 

Two weeks later, I finally saw it, a shadow on my skull. My hair was starting to grow back. Spring was back on my personal schedule. 

Gratitude is on the menu

As for every year, the fourth Thursday of November provides an opportunity to express gratitude… and gather with family with a traditional meal. I have shared previously the challenges met when dealing with the obligatory guest: the turkey.

The turkey and I have now reached an agreement. I pick a small turkey (less than 15 pounds), fresh and not frozen, and she will allow to be roasted without resistance.

Gratitude is on the menu today. I am done with treatments, chemo and radiotherapy. The PT scan that followed, at the end of September, did not identify any tumor. For now, I am cancer-free. That was good to hear. 

Ending the Third Round with Richard Parker

Here we are, this third cycle of chemo is almost over. On Tuesday, I will get Chemo#4 and the second half of this journey will start. The last two chemos will take place in May.

This round turned out to be more challenging than I expected. I realized that feeling OK is the result of a fragile balance. If swelling and itching happen, and I need steroids to calm everything down, all this add up and leave me exhausted.

However, after this week that ended at the Hospice House (where I work weekends in April) I feel serene. First of all, my diverse body parts are back to their normal size - an encouraging circumstance. And sitting with patients and family at the Hospice house gives meaning to this journey…

Tonight, Irvin and I watched the movie «Life of Pi» where the hero struggled not to die of hunger on his raft – and not to be devoured by the other shipwrecked passenger, the tiger named Richard Parker. “Richard Parker is saving my life, realizes Pi, he scares me, I stay awake and on edge thanks to him… He makes me survive.”

This chemo is a little like Richard Parker, ferocious and unselective assailant of my growth cells but able to save me from cancer. This is not a bad way to conclude this week – and this year of my life. Tomorrow, I will be one year older.  

Minor side-effects

They look like soft-shell crabs, plump and bright red as if coming out of hot water. They are firmly fastened to my forearms so no doubts are allowed: those are my hands. They have been swelling during my shift at the Hospice house yesterday – I work weekends this month. I showed them to my friends Nurses. “Edema” said one. The fact is, I had been warned that my feet could swell, a classic side-effect of chemo. I did not expect it would strike – not my feet – but my hands, and all of sudden, at work.

“What should I do?”  One of my friends said that keeping hands elevated would help. But when you start a conversation with a patient or her family, holding your arms up in the air as if threatened by a gun is not exactly an option.

Eventually I called the hotline of my oncologist – it is reassuring to be able to describe symptoms to a medical person whatever the time and days. She prescribed steroids. After work I went to the pharmacy with Irvin– so tired that the thing I wanted most was my bed. As soon as we were home, I disappeared under the blankets, and in spite of my usual insomniac self and the addition of steroids, I slept through the night.

Today, my hands were still swollen and red, and itchy – I kept rubbing them together like a fly meditating on its next move. I called back the oncologist office when I felt a twitching in my lips. I looked in a mirror and was startled to see I looked like a starlet after an unfortunate encounter with a Botox injection. My lips had doubled in volume.  This was probably an allergic reaction, I was told. But reaction to what? It could be the chemo, something I ate or… the steroids. I got Benadryl, as prescribed. It has helped with the itching, I must say, but progress otherwise is slow to come.

This is weird: my lips feel alien to me; holding stuff (or typing) with those chubby fingers is awkward. And I am supposed to be more connected than ever to my complex psyche: I must complete my midterm papers tonight and present them to my peer group and supervisor tomorrow. My pastoral functioning, which I am supposed to describe, has reached a new level of conceptual sophistication…

Dragging my feet

Here we are – third chemo has been absorbed. I know what I said in the past – when hit by the bast of energy coming from relief – that I was coming to chemo with a joyful and willing spirit.

But yesterday night, eve of the treatment, I must admit, I was dragging my feet. I did not even have the excuse of being fed up with the side-effects.

On the contrary, last week was perfect : Spring showed up (we had long minutes of sun breaks here and there those last days) and great shape. I felt energetic throughout the day, no more sudden fatigue ; my skin was healing. I had a natural glow even before I put on makeup, my severely rashed up hands and cheeks were healing. No more metal taste in my mouth; my taste buds were back. I would bite in a piece of chocolate and voila! the rich symphony of succulent flavors would be back, rather than a sugary and flatly mono-chord sensation… I felt just like I had been before chemo ever started (minus hair). I did not feel like doing it all over again.

However, this is the third chemo, which means being half-way there (six are planned). The oncologist told me I had anemia (low count red cells) but otherwise things are going in the right direction. 

Like previously, the only unpleasant moment was accessing the port with an inch-and-a-half needle (the port is very deep and apparently it is sinking deeper??) but everything else went smoothly. I received the wonderful anti-nausea medicine that covers me for 5 days, as well as a steroid for energy, then the two chemo products. Just as it happened before, I experienced this irrepressible sleepiness when they started to infuse, the sensation I was slowing being submerged in surreal sinking sands.

Tonight, I recognize those weird cold drafts that seem to circulate in my veins throughout my body. I had time for a good dinner as soon as I came home – the metallic taste came back two hours later. For the purpose of a scientific experiment, I chewed on a piece of chocolate. Dull is back.

But tonight, I am in good spirits. Spring is still here and all this is temporary. By the end of May, chemo will be over. Meanwhile, in two weeks, I may have again a little window, a teaser of what I will experience in June. 

Back to the Hospice house

At the end of the first round of chemo, I waited for the verdict: and it was good. My white cells did not get decimated. The oncologist made me swear I would be cautious and wash my hands at length and frequently. And she gave me the green light. I was allowed to go back to the hospice house and visit patients again. I was relieved – and apprehensive. I had spent three weeks away. With chemo, my most fundamental insights had been altered. Maybe my mind was too.

In March, I am scheduled to work from 6 to 10 PM. When I arrived that first night, I was feeling as vulnerable and exposed as I did on my very first day in September. I thought of the verse of the Bible, from Exodus (33:14) where the Lord promised to Moses, “My Presence will go with you, and I will give you rest.”

On this first night, I was talking with Felicia*, at the bedside of her mother who would pass on a few hours later. She shared about their lives and I realized that she was offering me, not only her trust, but also the opportunity for me to feel I was a chaplain again. She allowed me to walk with her through those essential and painful moments. 

Her sons went to pick up pizzas that we ate altogether. We talked about France and Germany where her family lived for a few years, of the grave illness that almost took her life the year before, and of the breast cancer that killed her aunt two years earlier. I mentioned the chemo. Felicia asked me many specific questions that maybe she never dared ask her aunt then. 
When I left, Felicia gave me a big hug, looking at me with warmth and compassion. She did not hug the chaplain. She hugged the sister who, just like her, was sailing in the midst of storms.

* not her real name. 

Tashina and her lifebuoy

Last Tuesday, our pup Tashina had a small surgery: extraction of a big wart which kept growing up close to her eye. It was not a big deal. But it had consequences: we had to prevent the animal from scratching the scar, in other word, putting on the “cone of shame”. 

We were sad to see our girl, who had been all frisky when she came out from the vet clinic suddenly still and stunned by the E-collar. She would stay motionless, fearing an impact between the sides of the cone and the outside world. 

She looked so distressed that we looked for a less drastic solution. And we found it: the inflatable collar. You put it on and blow air in it. It prevents Tashina from scratching the zone of the incision. When she tries, her paw actually scratches the surface of the collar.

Tashina got used of this new addition straightaway and does not seem to even notice it is on now. As for us, we feel like we have a dog ready to dive into an imaginary swimming pool, which is nice. Tashina invites us, with her buoy, to stay pleasantly afloat the events of our lives.