Infusion 13

Many thanks to all of you who send me emails, messages and texts. I appreciate the good thoughts and encouraging words immensely: they make me feel loved. Truly. I also apologize for not replying to all of them. I don’t always respond because I often consider them as replies to my blog posts. But I may get to them… 🙂

Life has been everything but boring since my last blog post. First, my friend Marthe, for whom I started this blog, flew all the way over from Zimbabwe to spend 10 days with me. It was a great visit. I was exhausted when she left but also replenished, if that makes any sense.

After Marthe left, things started getting a tad stressful as I hit a few bumps on my way to undergo radiation. After my latest and 12th chemo infusion 2 weeks ago (Nov. 29 to Dec. 1) I was scheduled for a week of radiation preparation, to be followed by 2 weeks of radiation itself. Radiation preparation consists of 3 steps: 1. have fiducial tumor markers implanted in my liver (to act as guides for where to radiate), 2. have an MRI done to show where the fiducials are, and 3. have a radiation simulation done (not sure yet what that means but I’ll let you know when I find out).

Well, step 1, i.e. the fiducial operation, was rescheduled TWICE! The first time because the hospital didn’t get the health insurance authorization in time. The second time because the hospital didn’t have enough fiducials in stock. They needed 6 (2 per tumor) and they only had 4, and they only found out when I was on the operating table and about to be anesthetized. They told me to get dressed, go home, and come back in 2 days.

This double postponement forced me to spend hours and hours on the phone and at various hospital front desks trying to reschedule steps 2 and 3, i.e. the MRI and the simulation, and in the end it resulted in the radiation being postponed by 2 weeks. Ugh!

Then, I remembered my oncologist telling me at some point that I could not be without treatment for too long. So I spent more hours on the phone and at my oncologist’s front desk trying to communicate with him and ask if it was ok to be without chemo for those extra 2 weeks before radiation would start. It took 2 days to get a reply which was that indeed, I could not be without chemo for that long and needed another chemo infusion.

All this uncertainty and time spent trying to reschedule things caused me to get pretty stressed out.

But all is good again.

Yesterday, Friday, the fiducials were implanted. I now have 6 tiny platinum nuggets in my liver which will act as beacons for the radiation. That operation itself was almost fun. I was under conscious sedation (Versed and Fentanyl) so I was awake during the procedure. Being awake was necessary because I had to hold my breath many times as the fiducials were being put in place right next to the tumors. They complimented me on my capacity to hold my breath for a long time. Also, the surgeon, ultrasound technician and nurses had a nice sense of humor which made the procedure almost pleasant. And Frank Sinatra was singing in the background. “When I was 25…”

And today, Saturday, I started my 13th infusion, which will last until Monday.

Simulation is scheduled for Dec. 19 and MRI is scheduled for Dec. 24.

 

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Infusion 12 of “who knows”

I really want to scream!

My 12th chemo infusion was supposed to be the last, to be immediately followed by a few weeks of radiation to eliminate what was left of the 3 tumors in my liver. And then I would be monitored.

That was until my oncologist announced that he wanted the radiation to be followed by another 6 months of the same chemo.  To maximize the chances of eliminating those damn tumors. He calls this the “whack ’em all” approach.

So, while there is still hope that I be put into long term remission, I am really discouraged at the thought of 12 more chemo sessions.

I was so looking forward to get a break from chemo.

On a more positive note, my mother is doing better.

Infusion 11 of 12

I am very tired. But there is quite a bit of news.

Infusion 11 was uneventful. But the scans (MRI and CT SCAN) I had a few days earlier have decided on the next course of action. Of the 3 tumors I have in my liver, 2 of them are in the left lobe of the liver and are easily accessible by surgery, and 1 is in the lower right lobe which is not easily accessible as it is lodged among major blood vessels and gall bladder duct. So they plan to use radiation instead of surgery to remove that one. The jury is still out on whether they will use radiation or surgery on the other two, although the oncologist, surgeon and intervention radiologist are advocating for radiation on all 3, to avoid radiation as well as surgery, which would be heavy. Radiation would last 5 consecutive days for each of the tumors.

I had another kidney stone last week. It passed by itself after a few hours.

Other than that, I am, as I said above, very tired most of the time. It makes it hard to function normally. I could lay down and sleep all day, every day.

The renovation on the house is progressing, though the house likely won’t be habitable before late January.

My cousins have informed me that my mom is in critical condition and may pass away. Sadly, I cannot travel to go see her at this time. I wish i could be here for her passing. But I have said goodbye to her many, many times.

I am immensely grateful to those who have cared and have been there for my parents since they became ill many years ago.

Staying positive

Staying positive is not easy. Life keeps throwing at you challenges of all sizes and shapes which must be overcome or managed. In many cases one can also learn from them, but it’s not always easy to turn them around or see the positive in them.

Last weekend and the following days I encountered a number of seemingly small but deep-reaching challenges which I didn’t immediately know how to address. I felt increasingly down for days. By the following Wednesday, the day before chemo, I was feeling pretty miserable. I had started my fast that morning. It was harder than usual. I craved food all day. By the time the “non-dinner time” came along my resolve weakened. The leftover spaghetti marinara in the fridge was fast acquiring very desirable and irresistible qualities. “Dammit,” I thought, “f@&k the fast, I am going to eat that spaghetti.”  I ate it with gusto. It tasted amazingly good. It made me feel better too. Food therapy! I didn’t even in the least feel guilty for breaking my fast. It didn’t resolve any of my challenges but I went to bed with a happy tummy and feeling a bit better.

The next morning was chemo day 1 of 3 of infusion 10 of 12. MY 10TH INFUSION!!!!!! Ten down, two to go! Yay! Yet I was dreading it because the last few chemo sessions had been harder to take. So I had breakfast of leftover Spanish tortilla, and coffee with a cookie. Yummmm! I also decided to do the rest of this chemo session without fasting, in order to determine if fasting or no fasting made any difference. Might as well turn a negative into a positive! Data for research!

Chemo day started just as any chemo day. Had my blood drawn by delightful vampire/nurse Kate. Saw my favorite oncologist who was happy with the state of things. Then went upstairs for the infusion. That usually takes about 4 to 5 hours. At noon I usually receive a visitor to keep me company for a couple hours. I love receiving visitors during the infusion. This time Lori had offered to come. It was wonderful to see her and to catch up after her summer away. It was also good to just talk to Lori who is a skilled listener and an effective problem solver. We talked about my recent challenges. She helped me come up with some answers and resolutions, to alter some of the stories I tell myself and others, and turn those challenges into opportunities. I felt so much better: she picked up my spirits from a low place and put them up in a high place.

It is very, very important for me to keep my spirits up. I feel that it is an essential part of my healing and that if I am unable to keep them up, I will not recover and I will die, chemo or not chemo. So far, I have been able, for the most part, to stay positive. It’s not always easy. When I start feeling down, I also start panicking and think that this is the beginning of the end. I desperately look for ways to feel better again. I have so many ways to keep my spirits up and they help immensely: I have a good life, a job I love, a supportive community of friends – I have never felt so loved in my entire life, and I live in a beautiful and nurturing environment. But sometimes it is hard not to focus on the negative. And sometimes it just takes a friend to help turn things around.

Today, chemo day 2, I feel surprisingly good. My spirits are up. I had a light breakfast. So far no adverse effects from having broken my fast: no nausea and very minimal hiccups. But I am very careful about taking preventative medication to control them.

It is a good day!

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.