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. 

"Look Good, Feel Better"

We were about a dozen of women, gathered around a smiling and dynamic hairstylist, in a workshop called “Look good, feel better”, also the name of a charity supporting women dealing with cancer. She was there, volunteering her time to give us advices on how to use make up and deal with our problematic hair situation. There was a teenager (non-Hodgkin lymphoma) who came with her mother and sister, next to a 60 something lady wearing a red fedora, who had by her side a young woman who was going to start chemo after a lung surgery.

We all introduced ourselves, saying our first name and our type of cancer. Melissa, the volunteer, gave away some make up products that had been donated to the charity. Among the good tips she shared with us: she showed us how to draw eye brows that would look natural – in case ours were to vanish in the chemo storm. How to tie up the bottom half of a T-shirt and wrap it around your head as if it was a scarf – but easier to wash than a scarf. And where to find this good wig store, which offers cheap yet good quality wigs, in Lakewood,  in a shady neighborhood (“do not go there at night”).  Melissa found a pink long wig there, costing only $75, that she wore at a Lady Gaga concert. A great price for a wig.

I also learned a lot by listening to my peers.  “When your hair fall, said one of them, it is actually painful!” I was stunned. Wasn’t emotional pain enough? Several participants agreed. “It is an awful sensation”, said the woman sitting next to me (brain tumor) who still had thick gray hair. “You know, when you were a little girl and had a pony tail, and then another kid would pull it? It is that way, constantly. As if someone was pulling your hair.” The lady with the red fedora shook her hair, looking incredulous. Obviously, this had not been her experience.

Another participant was a stage 4 ovarian cancer.  I shuddered – stage 4 had hovered over my diagnosis last month. I was not the only one. We all knew that stage 4 is the more serious, last stage. But she swept our fear away. “I was diagnosed with stage 4 ten years ago. Statistics and numbers don’t mean a thing. Each person is different. I have been in remission for years. Now cancer is back – I don’t know why.” What she knew, though, is the reason why hair often grows back with a different texture and curly. “Chemo has this perm effect on the skull and the roots of the hair. But after it has regrown, eventually, the effect goes away and you have your hair back.”

On Youtube, I had listened to the advices of this woman – an actress I think. I followed her advice to have my hair cut extra short before they would actually fall, after the first chemo. She lost her hair on the very day they were supposed to go away, precisely two weeks after her chemo. She happened to be in a hotel when it happened and it was overwhelming, she said. She was so relieved she did not have to clean it up herself. Her advice was to follow her example and go to a hotel – although it would be pretty strange to check in a hotel close to home and wait there for your hair to fall. 

Mine have not actually been that punctual. Two weeks after the chemo, I was expecting to get up with a completely hair-free and shiny head. No- my short hair was still here. They are now going away, little by little. Where are they? I don’t see any on my shoulders, the scarfs, or my pillow. Are they disappearing into nothingness?

I visited the wig store with a girlfriend pastor. I bought two long wigs and a short one. None is pink so far, but I keep my options open for the future. Spring is coming up and it is now too warm for my hat with bear ears. I also play with scarfs.

Yesterday I was walking in a grocery store with Irvin. I felt an aggravating sensation above my neck. As if… someone was pulling on my hair. Oh boy… They were right! Spring or not, this is the time of the decisive fall…

The Hair Farewell Tour

Saying good bye to the hair which has kept me warm for so many years and would shield me from the world is not an easy thing to do. I was told to expect them to fall two weeks after the beginning of chemo. That will be in a few days.

I was advised to cut them very short before they would fall off. It is less traumatizing to see short hair fall rather than long locks. I would tell friends this was their farewell tour.

Last Friday, on the recommendation of the Cancer center, I went to Pepper’s salon in Puyallup who cut hair for free for people in my situation. I went there not so much to save money but to be in the hands of people who would be used to deal with someone like me. That was a good idea. Amber, who took care of me, was kind and professional. I thought I had a healthy dose of detachment and kept reminding myself “it will grow back!” and “remember: no metastases to the liver!”

However, when Amber first used those scissors, I started crying. Amber was perfect: gentle but keeping on working with precision. She did not let my emotion overwhelm her. After a few minutes, I felt better, relieved actually, moving forward this step I had been dreading.

This also leads to a new experience: drafts around my ears and neck, which were never so exposed. I need to avoid catching a cold with such unpredictable white cells count. I found several hats and bonnets in our neighborhood Walgreen. My favorite one comfortably covers my whole head and even includes additional bear ears. This fits well into my spirit: I am ready for hibernation!