The unforgettable kindness of friends

I was never so touched by demonstrations of friendship as I was last February during and after my hospital stay.

What I remember most about that time is how friends cared for and took care of me. Only my mother ever spoiled me more, when I was small and occasionally ill.

Friends saw me at my weakest and most vulnerable and showed more kindness than I thought was possible.

While I was at the hospital, Shelby and Conor came by with flowers and a beautiful home made card which still hangs on the wall by my desk. Well, it hung on the wall by my desk until the flood. It will one day hang there again, along with the picture of a cute baby orang outang Doug gave me, saying that it was a picture of a baby politician (Doug doesn’t like politicians though he makes an exception for Paul). I still laugh when I think about it. Sara and Joy came by on the second day and made me laugh so hard my tummy hurt. Dana came many late evenings and stayed until I fell asleep. She helped me fix my malfunctionsl nasal-gastric tube on several occasions, and she advocated that I be relocated to a room where the wall pump worked. She also listened to me rambling about dreams I had while semi- lucid. Peter and Cleo brought many kinds of herbal teas. Cleo, who is a doctor, called the resident doctor to convince him to give me thorazine to calm my intractable hiccups. To this day, thorazine is the only drug that has been fully effective against my hiccups. Oh did I sleep well the night of the thorazine injection. Peter spent the first night after surgery in my room. Paul spent the second night. Those 2 first nights actually went fine. Trouble started on the 3rd night when the ileus and hiccups started. Paul came by as often as he could and always brought what I asked. Lori brought me fresh clothing and homemade yogurt. I will never forget how good it tasted. And Diane brought me home made broth made from Josh’s pasture raised turkey. Oh so nourishing!

After I returned home, not a single day went by without someone dropping by to provide me with comfort or some food.

Doug, sweet old man, who lives way out in the desert, came by every single day on his bicycle to check on me and bring me supplies. Each time he brought something different: fresh peanuts which he would roast on my stove, different kinds of kefir, home-made pecoras, fresh fruits, hemp seeds, a milk dessert sweetened with palm sugar, vitamin supplements, and more. He came by every day for weeks, until I started getting out of the house.  We would talk a lot about our childhoods: his in Michigan, mine in Africa. Sometimes we would just be quiet.

Early on, Peter brought me green chile breakfast burritos from Blake’s Lotaburger. I had never had them before and, oh man, did they taste good! At first I had a very poor appetite and I could only eat half a burrito at a time. They’re small burritos to begin with but, having been on a forced fast for almost 2 weeks, my stomach could only take in half of a small burrito. After about a week I was able to eat a whole burrito. Doug helped me consume the increasing number of burritos piling up in the fridge until we eventually consumed them all. Those burritos will be forever associated with that time of my life. Peter also brought me Cleo’s home-made beef broth, which I used to cook rice.

Lorraine brought me her delicious home-made yogurt, and noodles in broth, and sweet peas from her garden with the most extraordinary fragrance. Sweet peas possess one of my favorite fragrances, the other ones being that of the carnation, orange blossom and lily of the valley.  Nora came by with a creative and absolutely delicious chicken dish. Roxane brought me a traditional Italian pasta dish made from an old family recipe. Sara prepared adorable little tacos in my kitchen, with avocado, omelet and salsa filling. She brought enough of each ingredients that I was able to prepare those tacos myself on 2 more occasions. Hannah brought me the best home made chicken curry, an avocado salad, a fruity dessert and miniature daisies in a tiny vase. Those daisies lasted so long that at some point I had to check if they were plastic or real. They were real. Lynn brought me a gift basket with all sorts of goodies in it: fruit, cheeses, preserves, spreads, cookies, crackers and wine. Bettina brought me the most amazing soups: tomato bisque and minestrone. Joyce brought me Chinese rice, chicken broth, Chinese medicine and herbal teas to help me heal.

That was 8 months ago. Some of the details have faded. I hope I haven’t forgotten anyone.

Every single one of those gifts was food for my spirit. I learned how many people cared and made me feel loved. Before that I really had no idea. That discovery is carrying me to this day.

I am very lucky.

 

Intervals

After each 3 days of chemo (Thursday, Friday and Saturday, every other week) I eventually bounce back, although it takes longer each time. However, the fatigue remains.  I need to rest a lot. I am usually able to function a few hours a day, even if it’s on fewer cylinders: as my good friend Cleo puts it, I feel moderately fucked up most of the time. Other than fatigue, some chemo side effects remain throughout the intervals and seem to be gradually getting worse: stomach unease, oesophagus spasms, voice gone, and, throughout the 3 days of chemo, intractable hiccups.

I was told that chemo side effects can build up with each chemo infusion. It is true in my case too, but only moderately. The side effects seem primarily affected by external factors: the house flood, having had to move to temporary accommodation, and the 12-day kidney stone ordeal. I felt much worse on those occasions.

I am still fasting for 4 days every other week,  1 day prior to chemo and during the 3 days of it. I can’t help but believe that fasting helps moderate the gastro-intestinal side effects. I have no problem gaining the weight I lose during fasting. My appetite remains good.

Nine chemo treatments down. Three to go. The end is in sight.

Then, surgery.

Not a battle

Every so often, I am reminded of the oncologist’s sobering yet reluctant pronouncement I insisted he tell me: “In your case, you have 50% chance of surviving past 30 months from the date of the diagnosis.” That was back in June.

I like my oncologist. He knows, just as I do, that that is just a statistic, and he hesitated to tell me. But still, it is a good figure to keep in mind. We are now in October and I am down to 26 months.

Part of knowing this figure is frightening. To think that in 26 months there is 50% chance that I will be dead is unsettling. Yet, I can’t help dismiss that figure. Or at least put it in perspective. Because I feel good and I believe that I will live beyond the year 2020. Despite the fatigue and the side effects of the chemo, I feel solid underneath the ordeal of the treatment. My mind is clear even though my body feels bad at times. My spirits are high. I feel strong. I don’t truly know where that strength is coming from. But I can’t help but think that a lifetime of challenges, grief and loss has prepared me for this journey.

As I mentioned in the “About Me” of this blog, I don’t see this journey as my battle against cancer. I strongly dislike that expression. Fighting is not in my nature. I strive and persevere but I don’t fight. Fighting implies an enemy. I don’t see cancer as my enemy. Neither do I see it as my friend. I see it as my teacher. Of course, I am also doing everything I feel is right to make it go away. And while I may eventually succumb to it, in the mean time it is teaching me things which I value, and I am learning. Maybe one day I will go into these things in more detail, but for now just let’s say that I am learning more about inner strength, about compassion toward others and myself, about friendship, about moments of epiphany, about who I am. It is a journey of introspection as well as one of opening to the world.

So, when and if I die of cancer, I pray that nobody will say that I have lost my long battle against cancer. Because, for me at least, it is not a battle but a journey, with rough passages for sure, but also one filled with beauty and rewards.

 

 

 

Infusion 8 of 12

Things are getting a bit rough. I think my general feeling of well-being is slowly deteriorating.

My latest blood tests (Oct. 4) show parameters mostly within normal range, except, still, for minor signs of inflammation in the liver and slightly elevated glucose (110mg/DL).

My kidney stone was removed successfully 2 weeks ago by lithotripsy. I started feeling better from the moment I woke up from the anesthesia.

But even without kidney stone issues it has taken me longer to bounce back from the latest infusion. Today is Thursday, 5 days after the end of the last infusion, and I can finally say I am feeling okay. Between the latest infusion and today, it was the same old story: my mind is alert but my body is not functional. As I mentioned before, the fatigue primarily affects my body, not my mind. I can fairly easily force my body to do things but then my body feels like that of a zombie, though I frankly have no idea what it feels like to be a zombie. I can best describe the feeling by saying that it is like dragging my body behind me like a dead weight.

So, I must pace myself and prioritize my to-do’s. I get 2-3 hours a day when I can function more or less normally. That’s when I run errands or accomplish essential tasks around the house or at work. The rest of the day I am in zombie mode. I can hide it by not moving much, so not too many people notice. As long as I can sit and be at rest, I can, I hope, appear normal. And it is not difficult to smile.

Some have asked me how I fare mentally. Do I get depressed or discouraged? I really don’t. I did feel discouraged during the 12 days I had that kidney stone because of the constant pain and discomfort, the side effects of pain meds and kidney meds and the multiple invasive procedures it required. But those days are over and my spirits are up again.

I have really come to appreciate the small things of every day life. I have to spend of lot of time resting, and because my mind is alert while I rest, I notice many of those small things and they fill me with delight: the sound of birds outside the open windows, the soft autumn breeze flowing through the house, the sight of my cats moving around or resting peacefully near me. And the bigger things too: a friend bringing me a delicious home-made meal, another friend sending me a supportive email or text message, friends and acquaintances seeing me at work and kindly asking how I am doing.

Sometimes I want to cry with gratitude.

I feel blessed.