The chemo port

This post may be a bit too technical for some. But I know that my friend Marthe would be interested in it as a physician and because it was her who suggested I start this journal so she could follow what I am going through. If you don’t like reading about surgical details, just skip this post.

My chemo port, aka portacath or vascular access, was placed on June 26, 2018, 3 days before my first chemo infusion. According to Wikipedia, “a port is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical needle stick.”

Chemotherapy port

The port was installed through outpatient surgery. It was inserted below my right clavicle. A catheter runs from the port up toward the clavicle, passes above the clavicle and into my subclavial vein and then all the way into my jugular vein. The port and initial portion of the catheter are completely hidden under the skin. It basically looks like a cyst. But the bump is not visible under a shirt, although it can be seen under a tight T-shirt.

Port-diagram

It will stay in place until I no longer need it. It will be in there for months, maybe years. The downside is that I have to put up with a little bump under my skin. The advantage is that I no longer have to be repeatedly poked in my arm veins.

The surgical procedure to insert was totally painless. It only took about 10 minutes, although the whole event, including preparation and recovery times, took about 2 hours. I was under conscious sedation (through an IV of Versed (Midolazam) and the opioid Fentanyl. I was conscious throughout. I didn’t feel any pain although I felt some pushing, pulling and poking. I remember everything, including my dialog with the surgeon. This surprised me because I didn’t remember anything, not even being conscious, during my previous conscious sedation for my second colonoscopy in early June (I was not sedated for my first colonoscopy in February).

They placed a dressing on it which I was not allowed to get wet for 10 days. So, I got used to taking sponge baths and washing my hair in the sink. The bump was a bit sore for 2 weeks. It hurt the first time they put the needle in on chemo infusion 1. But I hardly felt a thing when they poked it for chemo infusion 2. The initial redness is now gone and the incision scar is barely visible.

Chemo Infusion 2 of 8

Today was chemo day 2. Two infusions down, 6 to go. Chemo days are every other Thursday. They start at about 8 am. It starts with a blood test. Then I visit with my oncologist to discuss blood test results and health status. Then they start the infusion. During my infusion, I receive a visit from the oncology nutritionist to discuss my diet in the context of the chemo and of my fast.

Today’s blood test came out good. All my parameters were within normal range. This, I was told, was to be expected, since I am an otherwise a healthy individual, but it may not stay that way as treatment progresses. I have regained the 7 pounds I had lost during my 5-day fast 2 weeks ago. My symptoms have been few. Other than fatigue, the main symptom I had was mild sensitivity to cold in my finger tips. This is caused by the oxaliplatin, one of the chemo ingredients. The sensitivity lasted about a week. The oxaliplatin’s side effects can compound over the time and cause irreversible neuropathy, i.e. constant tingling and numbness in the fingers. The doctor will decrease or stop the oxaliplatin before the effects become irreversible. Another minor side effect, which I wasn’t prepared for and which caught me by surprise, was “first bite.” The first bite of any food (or first gulp of any liquid) causes a sharp pain in the back of the jaw, below the ear loves, where the parotid (saliva) glands are located. The pain subsides after a few bite. The “first bite” effect only lasted a 2-3 days.

The nutritionist was satisfied that my weight was the same as it was two weeks ago, even though I lost 7 pounds during my 5-day fast and regained them all during my 9 days of fattening up. She did however suggested that I start my fast 1 day later, to make it a 4-day fast, as a 5-day fast every other week for 4 months might be hard on me and my body.

In today’s chemo cocktail they first injected dexamethasone, a steroid. That’s a small IV drip. It prepares the body for the chemo assault. But one of its side effects is that it stimulates one’s appetite, which is unfortunate when one is trying to fast. Normally, when fasting, the feeling of hunger disappears on the 3rd day. But last time, it lasted the entire 5 days.

Then they injected oxaliplatin. That’s an IV drip that lasts 2 hours.

Then they injected leucovorin. That’s a quick but large syringe injection in the chemo port.

Then they injected a solid dose of 5-FU (fluorouracil). Another quick but large syringe injection.

Then they hooked me up to my little portable pump which will continue to infuse me with 5-FU for 48 more hours.

They are still holding off on the avastin, a vascular inhibitor, to allow my chemo port incision to heal completely.

It’s kind of weird to have all these poisons injected in me every other week. I have always paid so much attention to eating healthy.

Today went well. I was at the cancer center from 8 am to 2 pm. Six hours. The infusion itself lasted just over 2.5 hours. I felt no ill effects while it was taking place. Paul and Peter came over at different times to keep me company. My friend Iris, who works there, had reserved a private room for me, thinking it would be more comfortable. But private rooms have beds instead of recliners. And you’re alone in them. They make you feel like you’re in a hospital. I thanked Iris and told her that in future I’d rather be a room of 4, with recliners. There is more going on and it feels less like a hospital and more like we’re all just hanging out.

I’m going back this Saturday to have the pump disconnected.

And then I can eat again.

Surgery

A few months ago (February 2018), I had emergency surgery to have part of my colon removed. I had been asymptomatic until 2 weeks before, when I rapidly became constipated. I had never been constipated before. I went to see my GP. He recommended Miralax and ordered a colonoscopy. Miralax worked for a few days but pretty soon nothing was going through at all. After 10 days of no pooping, the day for my colonoscopy finally arrived. The colonoscopy turned out to be a mere sigmoidoscopy because they could not go far up due to a blockage. Duh! The culprit  revealed itself to be a tumor which was completely blocking the transit. I was immediately sent to ER to have that tumor removed. I was admitted in the ER at once, where they gave me morphine, did an MRI, and put me on IV fluids to re-hydrate me. They operated the following morning.

The operation was successful. The surgeon removed a foot of my colon and was able to stitch the loose ends back together without the need for a colostomy (a bag). The biopsy confirmed a stage 2 colon cancer. The surrounded lymph nodes were clean. The MRI and Catscan showed no lesions or masses anywhere else in my abdomen. My CEA had gone down from 65 prior to surgery to 2.5 post surgery. Things looked good. They said the cancer had likely been removed. I would of course need to be followed up but there was no indication for chemo or radiation at that time.

Recovering from the surgery took some time. I felt fine and upbeat for the first 2 days after surgery. The doctor even allowed me to start drinking clear fluids on day 3. But on day 3, after my first cup of tea, I developed an ileus, i.e. my peristalsis stopped, i.e. my intestines went on strike, i.e. they simply stopped working. They put in a NG tube (nasal-gastric tube) to pump out the gastric fluids out of my stomach since those juices had nowhere to go. It’s basically a tube inserted in your nose all the way down to your stomach. It’s attached to a wall pump which pumps things out into a transparent cylinder that sits on the floor. The pump didn’t seem to work well. My gastric juices kept spilling on me. My friend Dana spent several evenings manipulating the heights of the NG tube in relation to my shoulder to avoid spillages, until a nurse figured out that the pump was not working correctly. They put me in another room with a functioning pump. It helped.

Right after they put in the NG tube, I developed hiccups. Intractable hiccups. That was rough. The hiccups kept me awake all day and all night. I could not utter a complete sentence without hiccuping. My friend Cleo, a doctor, convinced the intern to give me thorazine to stop the hiccups. After much reluctance, he agreed. The thorazine stopped the hiccups for a few hours. After that he simply gave me sleep medication every night at 10:00 pm. That helped me sleep and seemed to stop the hiccups while I was sleeping. For a few days, Dana would wait until I had fallen asleep before she left to go home. The sleep medication gave me vivid dreams which I would describe as they happened.

It took a week for the ileus to go away, after which they removed the NG tube and sent me home. The hiccups persisted. The doctor didn’t prescribe, or give me sleep medication to take home with me, so once I was home I could not sleep at all because the hiccups kept me awake. I became exhausted. The hiccups gradually subsided over a period of 10 days. (Note: I did find an interesting way to make them stop temporarily. More on that in a future post.)

The hospital stay was a brutal experience. In addition to feeling miserable, I was disturbed every few hours by nurses who came in to take my vital signs, to inject me with one thing or another, to take blood for lab tests, to change the bed. However, the nurses were, overall, wonderful.

Sharpened Senses

Thing feels a bit different to me now. Everything seems new. I seem to have a new way of perceiving the events of the days. Every experience is heightened. Every meal, every encounter, every bird song, every branch moving in the wind. It’s not that things matter more now than they did before. I’m simply more aware.

Part of this is no doubt caused from my renewed sense of mortality. But part of it, I’m sure, is caused by fasting. Fasting sharpens one’s senses. It can make you feel high. I know this from when I was lying in a hospital bed last February, after surgery, and I had nothing to eat for 11 days. On day 12, the doctor gave me permission to eat and I ate a small pot of yogurt. I ate it very slowly, one tiny spoontip at a time, with my eyes closed. And it was the best yogurt I had ever tasted. Of course if was a superior yogurt to begin with, home-made by Lori from Mary’s cow’s milk. But that day it acquired a magical quality. It really was the best thing I had ever tasted.

Later that day, Diane brought me some of her home-made turkey broth, made from one of Josh’s Thanksgiving turkeys. That too tasted oh so divine… I sipped it slowly, letting it my fill my body and my soul. I will never forget that broth, the flavor of it still vivid in my memory all these months later.

I have such good friends.

Those tasting experiences reminded me of Sophie’s wonderful and poignant line from the movie Sophie’s Choice:

Sophie: Mmm. You know, when you… when you live a good life… like a saint… and then you die, that must be what they make you to drink in paradise.

I was discharged from the hospital the following day and Lori took me home. When I stepped out of the hospital’s front door the cool fresh air enveloped me like a healing balm. The sun was shining and it warmed my skin. And everything I looked at seemed incredibly sharp. The drive home felt like the first time I had ever been in a car. It was familiar, yet it also felt entirely new. The mountains looked more beautiful than they had ever been. And the people in the streets looked like inhabitants from another planet. I was clearly still on a fasting high, even though I had just eaten spaghetti and meatballs from the hospital kitchen – and even that tasted fantastic!

After Lori dropped me home, I spent two hours in a rocking chair on the back porch because I didn’t have my house keys. I heard the bird songs, I saw the lizards doing their push-ups, and I smelled every whiff of the stables next door. It was a glorious day. Beethoven’s Pastoral Symphony might as well have been playing in the background.

Four months later, I am fasting again, for five days every other week, to help reduce the side effects of chemo. And again, my senses are heightened, not just during fasting, but also in between fasting. Many things I’ve done before feel like I am doing then for the first time. Like driving my car, or walking around the block, or cooking a meal.

 

Fasting

For this first chemo infusion, I fasted for five days: the two days prior and the three days during the infusion. The intention of the fast was to minimize the side effects of the chemo.

Chemo targets and destroys cells that are dividing and multiplying fast. That’s why cancerous cells, which divide and multiply fast, are vulnerable to chemo. But healthy cells who also divide fast are unfortunately destroyed as well, cells such as those from the digestive tract, and those from the hair follicles. This is why chemo side effects often cause GI tract problems such as loss of appetite, nausea, vomiting and diarrhea, and can also cause hair loss.

If one could slow down the growth of healthy cells, if one could stop them from dividing and multiplying, they would theoretically become less vulnerable to the effects of chemo. They would, in effect, become invisible to chemo. This is where fasting comes in. Fasting changes the body’s metabolism, causing cells to enter a self-protection mode which slows down the rate at which they divide and multiply.

If you do an internet search on “effects of fasting on chemotherapy” there is a lot that comes up. A lot of pretty compelling evidence, mostly for mice and rats. And some for humans. For me it was enough to get me thinking seriously about fasting.

I spoke to my oncologist about it. He did not recommend it. He said that my primary focus should be on keeping my weight up in face of the weight loss that would likely result from my chemo. While he recognized that there is some evidence that fasting helps minimize the side effects of chemo in mice and rats, he also said that there isn’t enough scientific evidence that it is effective on humans, and on which cancers and types of chemo it might be effective. But he did refer me to a oncology nutritionist to talk more about this.

The oncology nutritionist echoed the words of the oncologist. However, she did not dissuade me from fasting. She said that she would support me through my fast, and that as long as I was able to keep up my weight, she would guide me in how to best handle it, while also counseling me on how to keep up my weight.

I lost seven pounds in my five days of fasting. I suffered no side effects of the chemo., other than fatigue. Granted, this was only my first infusion, and side effects are said to worsen with every infusion. But I plan to continue.

I have nine days to regain seven pounds.

 

 

Chemo Infusion 1 of 8

June 28, 1018.

It is a strange feeling to be guided through the chemo ward and then sit in a chair where you never imagined you’d sit.

This is the chair where I officially become a cancer patient, where I join this club which I imagined to be populated by ashen, haunted-looking people wearing baseball caps and wigs.

As it turns out, some people are as I imagined, and some aren’t. I am sitting in one of four recliners in a room supervised by nurse Laura, tall, graceful and radiant. In the recliner across from me is a vivacious middle-aged lady with a mild Hispanic accent and laughing eyes. We wave at each other and gaily introduce ourselves. Her name is Lucy. In the recliner nearest to me is a older lady, asleep, covered with blankets and who, yes, is ashen and haunted-looking, and she opens her eyes occasionally with an air of total misery.

I am receiving FOLFOX, a chemotherapy regimen for the treatment of colon cancer, one of the two cancers I have. I am going to get eight infusions of it, every other week, after which they will re-evaluate my prognosis. At this point my prognosis is not very good. My cancer has already spread to my liver. I am told I will likely never be cancer-free again. A best, they may be able to control it, slow it down. At worst, I have less than two years to live.

The infusion, consisting of a number of large and small IV bags and two large syringes administered in close succession, lasts two and a half hours. It will last longer next time, when they add another IV bag to the cocktail. But today is a breeze. It hasn’t made me sick, as I had expected. They say that “feeling sick” part will come later. They send me home with a bum bag containing of a pump and a 250ml IV bag of 5-FU (Fluorouracil) to be pumped into my jugular through my chemo port, over the next 48 hours.

I have fasted for three days now. I feel slightly lightheaded. But I am calm, at peace, and curious about what’s to come.