My last chemotherapy round was the easiest ever, and for that reason I felt very grateful and rested, like I had been on vacation somewhere. I arrived at my lab appointment at 7:00 a.m. and my favorite port nurse T. accessed the port expertly. For the first time though, my port was being a bit cranky and was difficult to get blood return, so a bit more flush did the trick and she drew several vials of deep red blood. My lab tests drawn this time were a CBC, CMP, CEA, and LDH.
The results were quite promising! In my Complete Blood Count, the platelets were 116, up from 98 but still less than the 150 desired. My Red blood cell counts were up to 4.13 from 4.09, should be about 4.37. For my Comprehensive Metabolic Panel, my liver enzymes were back in the green, AST=37 and ALT=56.
Best of all, my Carcinoembryonic Antigen (CEA) was 4.7!!! Down from 8.8 last month. A CEA of 2.5 is the high side of normal, and my highest value was 70 before liver surgery. The CEA numbers are very important because low CEA levels put your oncologist in a good mood. There are reasons CEA can be elevated other than cancer like smoking or exposure to deadly chemicals, so it isn’t the most specific test in the world, but we’re fairly certain these relate to my tumor and the new number is comforting.
My Lactate Dehydrogenase was down to 130 from 150. Cancer cells are devolved primitive cells due to mutations so they are forced to get energy from fermenting 21 times more sugar than normal cells. The LDH test measures a byproduct of that fermentation and skyrocketing values aren’t very good, people don’t tend to survive with high readings. So this lowered number is also good news.
I lost 2 pounds and am now at 202 lbs, so my weight is stable.
We met with the oncologist and I told her the story of the last cycle, then we looked at the lab results and decided to proceed with the chemotherapy. We got to the infusion clinic earlier than ever and it was only a half hour before I was shown to a bed. A half hour is about the fastest it can be since it takes the pharmacy about that long to custom mix your particular cocktail of chemo drugs.
I got my pre-meds and met trainee nurse A, who came to us from Boston and is very experienced in nursing, but new to the chemo business. I swallowed the 12mg dexamethasone and 8mg zofran, and after a half hour wait to let them settle in, I got a dose of atropine to counter the irinotecan’s crampy abdomen effects and we started the irinotecan infusion.
Nurse O is probably my favorite chemo nurse. She is so knowledgeable and experienced, explains everything happening really well, fills in gaps in my knowledge, and does a fantastic job training the other nurses. Best of all, she can stick a huber needle into the dead perfect spot in the reservoir of my hepatic artery infusion pump in one swift, nearly painless maneuver. I was complimenting her on this when I realized I may have jinxed the whole thing… but she repeated her previous expert performances without a stitch of worry.
Nurse O flushed and then filled the HAI pump with the floxiridine for two weeks of constant infusion. The irinotecan infusion finished, we attached the 5-flurororacil to my port line from a take-home portable IV pump, and we were free to leave! I think it was a new record for speed, the whole process starting with the lab work, was over from start-to-finish in about 5 hours.
Normally after the irinotecan infusion is done, my stomach is more upset than it was at this time, so I wanted to risk getting some lunch in me, as it was before 1 p.m.. We walked about quarter mile to a cafe that served African dishes. I’d heard good things about it, but had never gotten a chance to go there. It did not disappoint, though the eggplant dish I ordered was a bit spicy and I worried about having another bend-over suffering digestion event, so I finished only half the dish and traded with my wife for her salmon dish. She was very nice to offer this, but then I learned she doesn’t really like eggplant, so then I felt bad. I LOVE eggplant in so many different ways, how after 35 years together I missed that she didn’t like eggplant?
Afterwards, we walked back towards the parking garage but we had to ascend hundreds of steps to do so and my wife’s knees are not in good shape so it was very slow and painful going. We stopped to have a rest halfway up.
For dinner, at my oldest son’s request, I taught him how to make homemade tomato soup by roasting tomato halves and garlic under the broiler, sweating onions and celery in butter, adding the tomatoes and cooking for about 20 minutes, putting in some homemade chicken bone broth since I was out of vegetable stock, and a bit of basil, then blending the soup until just broken up because I don’t like it too smooth. Then he wanted it to be creamy so I taught him how to make a roux and turn the dish into a tomato bisque. In exchange, he made me a killer grilled cheese sandwich and we had that for dinner. It hit the spot, and my tummy was very happy.
I had a terrible time getting to sleep that night due to the steroids. I had 5mg melatonin around 9pm and still wasn’t able to drop off to sleep until about 2am. I woke up at 7am with an upset stomach but not full-on nausea. Some milk and crackers seemed to help.
I had to rush to my yearly cardiologist appointment, and she spent a good long time going over the events of the past year. With the weight loss and exercise (6000 steps a day now), my systolic blood pressures are in the 100s-110s, so she dropped my blood pressure medicine, Losartan, by half also to give my kidneys a break. She also said research is favoring a figure of 7500 steps a day, so I need to increase my walking. She was happy that my metabolic syndrome markers are way down, and was thrilled with my last lipid panel: Total 117, LDL 45, HDL 50, and Triglyceride 111. My Triglyceride to HDL ratio was down to 2.34. So here is my little lecture on the significance of this ratio to your health:
Your Triglyceride to HDL Ratio. This ratio is an indicator of your insulin resistance, and this value should ideally be as close to 1 as possible, but good scores are usually less than 2. A score greater than 3 is not good. I think my score here was a 9 when I had my heart attack in 2007. If your score is that high, this gets called diabetic atherogenic dyslipidemia, and it accelerates atherosclerosis, making heart attacks and strokes much more likely. There is actually a push to use this ratio to diagnose diabetes, because it shows up a decade before your blood glucose goes wonky, and usually by the time your diabetes is diagnosed using blood glucose levels, your heart has already incurred way too much damage. There is a lot of evidence that insulin, and not cholesterol, is the cause of damage to the cells that line the walls of your arteries. The cholesterol that accumulates there is like the fire truck in front of a burning house, it is trying to put the fire out but in this case, since fire trucks are always in front of houses on fire, they get blamed for starting the fire. What you can do to help avoid this is (in order of importance):
- Keep refined carbohydrates low, and avoid as much sugar as possible. Sugar will kill you much faster than any kind of fat, except for trans fat and expired oils.
- No snacking between meals — mom was right when she said you will ruin your dinner, and now we know it will ruin your heart too. Your insulin levels need to go down and stay down for some time before your next meal.
- Give yourself a good fasting before eating the next day. Don’t eat for a couple hours before bedtime, sleep 8 hours (also important), and when you break your fast your insulin levels should be down again.
- Avoid vegetable oils (that is a misnomer — there are no actual vegetables in vegetable oil) and seed oils. You are actually better off with coconut oil, palm oil, ghee (clarified butter), butter, beef tallow, lard, or chicken schmaltz. Seriously! Check the dates on your oils and throw them away if expired, or if there is no expiration date on your oils. Olive oil is amazing for its polyphenols, but only if it’s not heated to its smoke point which oxidizes the oil and makes it harmful. And only buy olive oil that is single-sourced from one country and has the production date and expiration date listed on the label. Avocado oil may be okay as well if you don’t want to trust the oils the good Lord gave you, and it is good for cooking due to its high smoke point.
End of lecture!
So I went into the office on Wednesday and had lunch bunch with my friends. I had the meze platter with eggplant salad, ezme, baba ganoush, tabouli, and stuffed grape leaves, and fresh Turkish bread. It absolutely hit the spot but I didn’t touch the ezme, it was too spicy. I had also an order of cigar bourek that was good but maybe not entirely beloved by my tummy at the time. The food and company were perfect.
At 3pm I had an appointment to get 4 new tires on my 2015 Smart ForTwo Electric Drive, and the shop was backed up so it took until 6pm. While waiting I went to the shops across the street and walked more than 7000 steps, and picked up some groceries and chicken wings for dinner.
When I got home the older two kids divided up the prep duties: my oldest made my special recipe buffalo sauce and he got the emulsion with the butter just absolutely perfect. I made the beer batter and dredge with 16 herbs and spices, and my middle kid cut the wings into flats and drumsticks, and reserved the wings in a container for making chicken stock later. I’m not in a position to handle the spice of buffalo wing sauce due to the chemotherapy destroying my intestines, but I did try a couple of wings as simple fried chicken, and they were perfectly crispy and tasty. Since the liver surgery (and gallbladder removal), I can’t tolerate a large volume of fried food though, so I made a salad with tomatoes and cucumbers, red onions, feta, olives, and high quality olive oil, with a splash of balsamic vinegar. I would normally have more vinegar but it really upsets my stomach on chemo week.
And upset my stomach it did! I had a deep bout of nausea and took a Zofran, then had a dish of ice cream because it always seems to settle my stomach… or soothe my brain. After about 30 minutes I was feeling pretty okay.
Thursday was takedown day, and Nurse J. from the home nursing service came after the 5FU infusion was finished, flushed the line, and put in heparin to hold the fort until next time the port gets accessed. It was a sort of bittersweet experience because Nurse J. is taking a job with less travel and this was his last visit. I’ll miss his friendly nature and his deep concern for his cancer patients. After takedown I took a shower, which I can’t do while the port is accessed, and feeling all nice and clean, I made it in to work by noon! I had lunch in the cafeteria, a caesar salad with no croutons, and the addition of olives. And two deviled eggs, which I have never seen on offer in the cafeteria before. I love deviled eggs! And these were no disappointment.
On Thursday night I went to pool league and won a 9-ball match against Perry (a 5) for the first time in my life, and we were competing for one last ball so it was a close and exciting contest. I’ve never even been that close to winning against Perry. Then I won an 8-ball match 3-0 against another 4 and she is honestly a much better shooter than I am, but I played very defensively, which I think offended her. (So sorry!) That night, as a team we did a clean sweep in 9-ball, meaning we won all 5 matches for a 73-27 score. We also won the 8-ball match, but not all the games. This puts us in second place for 9-ball, and our eyes are on the next city tournament if we can take the lead!
Friday was a good day! I started the day with a nice conference call with my Mom and sister, which is a wonderful start to a day! Then I went into the office, had a salad for lunch with still more deviled eggs, and worked until I got a craving for enchiladas. At the end of the day I group-texted the family and asked if anyone wanted to go to El Rodeo, one of our favorite Mexican restaurants, and everyone was enthusiastic about going. At this restaurant, their enchilada sauce is not hardly spicy at all, so I hoped I would tolerate it well, and I did — 2 bean and 2 cheese enchiladas supreme. I wasn’t feeling the beef or chicken. No problems with digestion! Happy Day!!!
After dinner, feeling full and having started my steroid crash after the dexamethasone wears off, I went to bed at 9:30pm and slept for about 6 hours. Not feeling too tired, I updated this blog and then went back to bed.
The weekend went by in a blur. Saturday we watched Everything, Everywhere All At Once which was amazing and pure chaos, and the movie was interrupted often by some chaos in our household too. We watched the movie in the afternoon so that my wife wouldn’t fall asleep in the middle (she wakes up at 4am for work and after about 8pm she falls asleep pretty much wherever she is sitting or standing). The film really is deserving of all the awards!
I think the good week started early on Sunday morning, as I felt pretty good and had minimal side effects/symptoms. Typical for this time in the cycle, I have started to develop mouth sores since the chemotherapy attacks quickly dividing cells like the lining of your mouth and the lining of your intestines, and things like your hair follicles too. As I get more cycles of irinotecan, I seem to be developing a cold sensitivity in my back teeth that usually goes away by day #9. It makes it hard to have cold iced tea or ice cream, it takes several minutes of discomfort before you’re accustomed to cold things. But in the big scheme of things, this is very minor and I’m thankful to be complaining about something so minor.
Monday I went into the office for work, had delicious tacos al pastor with grilled pineapple for lunch with friends, and that evening I made [Japanese] yakisoba (fried noodles) for dinner. I learned a new trick from last week’s pad thai experiments. With pad thai, you simmer the pad thai sauce until it thickens, set it aside, then add to the noodles later so they don’t get overcooked and gummy. I was inspired by that and did the same when making the yakisoba sauce, mixing sake, japanese worcestershire sauce, and Bulldog tonkatsu sauce and simmering them until thickened. Then after stir-frying the meat, adding the vegetables, then the bean sprouts and cabbage, I added the noodles and the thickened sauce, stirred until mixed, and sent it to the plate. The advantage of this was that the vegetables were not too overcooked and the noodles were more toothsome, which never happens when you have to simmer off the sauce while all the ingredients are stewing in it. What a great lesson learned! Though my oldest child said this time he thought the sauce was too intense and I realized the packet of fresh yakisoba noodles I used was 12oz instead of 16oz, so I should have compensated by making less sauce. I actually liked the flavor a lot, though it burned my mouth sores. I had to go update my recipe with what I learned, so I remember to do it again next time! I love when you get a new outlook on one recipe from the techniques of a different recipe.
Tuesday morning I went into work and had lunch in the cafeteria downstairs, with seven of my coworkers, one of whom was visiting after retiring at the beginning of the year. It was so wonderful to see him again, and also wonderful to have lunch with the team which has been rare in the COVID and post-COVID days. Now that people are returning to the office, I hope for more opportunities to see everyone!
On Wednesday I got to see the Lunch Bunch for Turkish food. My favorite Turkish restaurant was collecting money and items for earthquake victims and the local news showed up to interview the owners and employees. Sleeping bags, clothes, shoes, boots, blankets, and much else were being packed into boxes and they were to be taken to the Turkish embassy in Washington, DC. When the news story aired, I was in the background eating lunch and was momentarily shown in the broadcast. A scene shot of the front of the restaurant also included my little black Smart Brabus. But it’s a somber news story; Turkey is going to have such a long road back to normal, it is horribly sad. One great way to help is to donate to the Bridge to Turkiye Fund.
I took Friday off work and went to visit my parents for a couple of days. In the days before the cancer treatments, I tried to visit them once a month, but I am very lucky now if I can see them every few months. I planned to leave around 8 in the morning but didn’t get on the road until after 9, and I stopped a few times to walk around and prevent pulmonary embolisms by taking ten-minute walks around rest stops. I arrived around 2 p.m. and was quite tired by the trip, so I took a nap for an hour or so, then visited with my parents for a while. Then I got to have dinner with my friend J from high school, and I enjoy every opportunity to spend time with him since our friendship magically picks up like not a moment had passed in between. A recurring theme in my life lessons with cancer is that special friendships are golden treasures, and you should spend as much of your life nurturing and appreciating your good relationships as you possibly can.
When I got home around 8:30 p.m., my father went to bed since he turns in pretty early, and I got to spend some nice time chatting with my mom on the couch until about 10:30. My sister and father always have breakfast together at a place called Anita’s, that has breakfast burritos with egg, potato, and a variety of ingredients and proteins depending on which one you choose. There is a whole take-out business dedicated to people ordering and picking up a bunch of these breakfast burritos for their home or office, or just for themselves. They meet there and have quality father-daughter time every week, and my sister wanted me and my mom to join this time for a nice family breakfast.
I got to sleep in my old bedroom and I woke up the next morning in a sort of time warp back to 1985 or so, hearing my parents talking and saying, “but it’s 7:30, he should be up! Is he awake?” I can’t tell you how many Saturday mornings went like this growing up, since I liked to stay up late in the morning on Friday nights and watch Star Trek or Doctor Who, or read or write in my bedroom until the wee hours of the morning. I would always sleep in, while my family woke up at 5 a.m. and made huge lists of chores and things to accomplish for the day, and they would divy up all the tasks and all of their work would be finished by about 9 a.m.. Then they would congregate outside my door and make noise and scuff about, somewhat irritated that I was still asleep. If I slept past 11 somehow, the dog’s slimy tennis ball would end up being thrown in my bed repeatedly, shortly followed by being jumped on by the dog, until I got out of bed and was good and awake. My nickname in these moments was Lazy-Bone Jones.
So hearing my parents walking around the house talking, I got up and they must have texted my sister that I was awake because she showed up shortly afterwards, and not even having showered yet, we jumped in her car and went to Anita’s for breakfast. And the breakfast didn’t disappoint — so muy delicioso. The place had maybe 20 percent of its tables occupied, and my family were commenting about how busy the place was this late in the morning. I asked when they normally came, and I think they assumed that I knew, but the answer was they always get there at 7:00 sharp. So I seriously threw them off their groove by sleeping in. It’s nice how almost 40 years later, our Saturday family dynamic isn’t all that different, LOL.
I got some quality time over the weekend with my parents, helped teach my Dad the ins and outs of the Plex Media Server so that he could access and play videos from an external drive on their TV, and showed my mother how to search plex.tv for movies and shows, since it shows very accurately which streaming apps and services can stream that movie for free or for rental or purchase. I’ve used Plex for years on my home NAS and totally love it.
I also had a really cool conversation with my Dad about Tyre Nichols and the Memphis police, and how in policing, politics, and in our relationships, our society is losing the ability to treat others like humans, with respect. The dehumanization of the last few years makes it too easy for us to demonize and murder people from other parties, races, countries, or walks of life. We need to train ourselves better how to be better human beings. This discussion provoked some rare discussion from my father about his time in the military, which is always amazing and fascinating because I do love hearing about and learning what makes my Dad tick.
And before I new it, way too soon, it was time to go home, and once there I began the preparations for the next round of chemotherapy. I like to prepare some food to stock the fridge with easily reheatable meals that don’t upset my stomach during chemo’s bad week.
This time I made homemade cole slaw and my gramma O’s cabbage rolls recipe. This was the first time I ever made cabbage rolls and they turned out okay, though the recipe calls for uncooked rice and it was a bit too al dente even after 50 minutes of baking, probably I did not have enough water in the filling. But on reheat they were wonderful! Not a bad first try. Now it’s time for the next cycle! On Valentine’s day I will have a CT scan to check the progress of the chemotherapy on my tumor, and I have my fingers crossed for the best!
I appreciate everyone who has gotten this far through the blog post. Thank you! Love to you all!