Musings by OZ

 

Weeks after being diagnosed with stage 4 non-Hodgkin’s immunoblastic high grade lymphoma I was told that if I wanted to live that I would have to undergo 6 month of chemotherapy treatment. I was informed that the treatment that was prescribed was the strongest possible dose available and that my body may not be able to make it through 4 months of the treatment because it was such an aggressive dose, um yeah not scary at all.

After agreeing to the chemo everything moved very quickly. I went from being healthy to being diagnosed to being a cancer patient in just a few weeks.

The decision that now had to be made was how the chemo would be administered. The two options I was offered were via a port in my chest or intravenously through a vein in my arm. A port is a small disc made of plastic about the size of a quarter that requires surgery to place just under the skin just above the right breast. A soft thin tube called a catheter connects the port to a large vein that leads directly to the heart. The chemo chemicals are administered through a special needle that fits right into the port. I opted for the port and on January 25th I had port placement surgery. 

When it was time to hook me up to the chemo IV all they had to do was insert a needle into the port, it was mostly painless. Before they hook the IV up to the port the nurse offered to use a cold numbing spray to help with the pain, the first couple of times I chose to use this spray. The third time the nurse was in a playful mood and said something along the lines of, man up and stop being a wimp. So I told her to skip the spray and just shove that needle into my chest, I never used the spray again, I actually found that the cold numbing feeling of the spray was more uncomfortable than just pushing the needle directly into the port.

 

The first treatment was 4 days long, 2 of those days were 8 hours and 2 days were 6 hours. The first day I did fine, no big deal but on day 2 I had issues. All morning my nurse kept asking me if I was cold and kept offering me a warm blanket. I thought it was very nice of her to be concerned about my comfort but what I didn’t know is that they had a reason to be concerned. It started with a slight chill and I was too stubborn to admit I was a bit chilly so I declined the blanket once again. That slight chill quickly got worse, to the point that my teeth were chattering, too late for a blanket now.  My whole body started violently shaking. The nurse was quick to act and injected something into my IV bag that very quickly stopped the convulsions. Apparently my body reacted to the chemo which I was told was fairly common. The body tries to reject the chemicals that are being pumped into it, it sees them as a poison but after a while it gets used to it and accepts it. This was the only time I had any issues in the chemo room, it was very uncomfortable but thanks to the fast reaction of my nurse it didn’t last very long.  From that point on I took full advantage of the toasty warm blankets if I started feeling chilly.

The following five months I received 3 days of chemo each month as an out-patient treatment so I was able to go home each evening. The 3 days of treatment were not so bad, I just sat in the chemo chair with the IV hooked up to my port. I would bring my laptop, cell phone and iPad so I had plenty of things to keep me busy. Most of the time I just listened to music on my headphones and chilled, the non-convulsive kind of chilling thankfully.

Ginny stayed with me during every treatment I received, initially I tried to tell her that I didn’t need her with me but as the weeks went by I quickly realized that I couldn’t do it without her. It meant the world to me that she chose be be right there by my side no matter what.

24 hours after each chemo treatment once a day for five days Ginny had to administer a shot to my stomach. This shot was a white cell booster called Zarxio and it helped to stimulate the growth of neutrophils, a type of white blood cell important in the body’s fight against infection. This shot would help insure that my cell count didn’t drop to dangerous levels, if it dropped below a certain count it would leave me open to infections.  One of the biggest risks with chemo is not the chemo itself but the risks of picking up secondary infections or diseases because the cell count is dangerously low. To help monitor such things I would have to take my temperature multiple times a day during this period of time because a fever is one of the first signs of a dangerously low cell count. We could have chosen to go to the hospital to receive the shot but each visit to the hospital would expose me to germs that could potentially make me sick, it would also expose me to the traffic on the 405 Freeway, neither was a risk I was willing to take. Ginny had never given a shot before and I couldn’t imagine how difficult it was for her to inject me in the stomach over 30 times during my treatment, this was something that she was definitely not comfortable with but she stepped up and did what was necessary and did a great job. I think it was more painful for her to give that shot than it was for me to receive it. After the first round of shots I determined that I had an issue with the blood cell boosters, the shots caused me severe bone pain, enhanced the nausea and generally made me feel horrible. After the first couple of shots I came up with a cocktail that I took an hour before each shot. I would eat a cannabis edible, take a CBD oil capsule and half an anti-anxiety pill, by doing this I was usually able to rest comfortably and sleep through most of the night.

3 days each month for 6 months we would go to the hospital and I would receive my treatment, the days that I got the chemo didn’t really effect me but by day 4 or 5, the shit got real.  A few weeks each month I felt miserable, incredibly nauseous, weak, tired, absolutely no energy, seriously constipated, irritable, brain fog, I was miserable. This stuff didn’t just affect me physically it affected me mentally, it throws everything out of wack including the hormones and causes mood swings and periods of depression. It pretty much turns your whole life upside down, it affects you physically, mentally and emotionally down to the core of your being. I have never had any issues with anxiety before, I didn’t even really know what it is or what it means to have an anxiety attack. It didn’t take me long after starting chemo to learn exactly what anxiety was and how debilitating an anxiety attack can be. Everything would be fine and out of nowhere I would become anxious, to the point where it was so uncomfortable that I couldn’t breath or think, time stood still as the world collapsed around me. This may sound a bit melodramatic but it is damn close to the truth. In all honesty, the amount of time it took to take a single breath I would go from feeling great to having an overwhelming feeling of anxiousness. It was such a horrible feeling to know that I could lose control so quickly, to go from smiling and being happy to crying and shaking with anxiety is a horrible thing to experience, it was a loss of control that I was not used to. To this day I still have anxiety attacks, every once in a while something  would happen that would remind me of my treatment causing anxiety. For example visiting a hospital, which never effected me before, now makes me very nervous. The chemo chair that I sat in was a tan color, we had recliners in our apartment at the time and they were the same color, before I finished the 6 months of chemo we had to replace those recliners because they made me so anxious. To this day whenever I see a tan recliner it reminds me of the chemo, it doesn’t make me feel quite so anxious as it once did but it still brings back memories of things that I would prefer to forget.

After the first round I learned to anticipate how I was going to feel, I knew I was going to feel horrible. I knew what was coming and to prepare for it I smoked cannabis, took healthy doses of CBD oil and ate lower doses of THC medicated edibles. During the chemo months cannabis was truly my medicine, I used to smoke it recreationally but now it was no longer just for fun.

Each month a few days before the next round of treatment I would start to feel better, the feeling of always being nauseas starts to go away and I would start to regain a little of my strength. The chemo treatment is set up in a way so that just as your body starts to recover, just when you can breathe normally again without feeling sick it is time to start the next round, you never fully recover before you have to do it all again. Every 28 days I received 3 days of treatment, and each month it took about 26 days for me to start to feel better. This left only a couple of days each month of feeling ok.  As the months went by I started to think I knew what to expect but the side effects from the treatment were very unpredictable. I learned too live in the moment and appreciate every second that I felt somewhat normal because those moments didn’t last long and were quickly replaced with moments of feeling horrible. To say that it was an extremely difficult 6 months would be an understatement.

Each morning as soon after I woke up I would eat or smoke some cannabis, most mornings I woke up feeling very sick usually around 4 am. Eating and smoking cannabis would help alleviate the nausea. Another way of helping with the nausea was to suck on a THC candy, it really helped settle my stomach and by doing this I was usually able to avoid taking the anti-nausea pills that the doctor prescribed me.

 For the six months that I was on chemo, food was always a challenge. It was difficult to find food that I could hold down or even put in my mouth or sometimes even be in the same room with. I learned very quickly that the chemo affected all of my senses, my sense of smell and taste completely changed. Food that I once enjoyed would lack flavor, some foods that I once enjoyed now tasted rancid or spoiled. The texture of some foods would become unpalatable and at times I couldn’t taste anything that I put in my mouth and sometimes everything I ate tasted like metal. The chemo also affected my vision to the point that I couldn’t read or watch TV. My sense of smell was the most affected, even the slightest odors would make me sick to my stomach including food, cleaning products and occasionally the smell of our pets.

Ginny did an amazing job feeding me and quickly learned a valuable lesson, always have a back up plan when it comes to food. Many meals were wasted during that time, she would cook me something but when I attempted to eat it I just couldn’t stomach it, the smell, taste or even just the look of it would make me sick. When this happened she would head back to the kitchen and find something else to try. I found that jello or drinkable yogurts/kefir were usually good, or dry toast and scrambled eggs, I ate a lot of un-seasoned scrambled eggs on dry toast. We had a juicer at the time and I found that fresh fruit juice was a wonderful option so we always had a pile of fresh fruits available. Gatorade was always a good option, some days even water tasted bad but for some reason Gatorade was always good. The goal was to eat and keep it down, sometimes I could only eat a few bites of food before I would push the meal aside, we considered a few bites of food to be a great success. Ginny would constantly try and feed me, even when I wasn’t hungry she knew that I needed food, every couple of hours she would bring me something to eat, big meals were impossible, the answer was small protein rich meals throughout the day.

Chemo is strange in that you don’t always feel like shit, most of the time I did but I would also have moments of clarity, moments that I felt great. Most days I did not feel well but even on these days I would have brief periods of respite from feeling like crap. On some days I would feel crappy all day long but would be surprised to have an hour or two of feeling ok, its like when the sky is cloudy all day and you are just sitting around feeling depressed but then the clouds part and the sun comes out for an hour or two and you get up off your ass and get out into that sunshine and it changes your attitude. Even on my worst days the clouds would occasionally part and the sun would shine and I would have a brief respite from the chemo crud. I found that it was extremely important to take advantage of these moments of sunshine, if Ginny saw I was feeling better she would insist that I get up and do something, anything. On the days when I was the weakest we would just walk down the hall to the elevator and back, even though it was a very short walk it did me wonders to get out of that apartment for a moment. When I was up to it we would take our dog, Shpongle,  for a short walk outside.  To just get out into the fresh air for a short time made a huge difference. If I really felt good we would jump on the bikes and ride to the beach, even after four months of treatment, during the times when I felt the worse I still had the strength to go for an occasional bike ride. I had many really bad days that started off horribly but the chemo clouds would part and the sun would shine so we would jump on our bikes and ride to Venice Beach or even to the Santa Monica Pier. I was so lucky to be living so close to the beach because being that close to nature helped me to heal. I had many bad days when Ginny would load me up in the car and we would drive to the beach and just sit under an umbrella for hours. There is something wonderfully healing about taking off the shoes and making contact with that cool wet sand between your toes. The beach was a magical place for me in my days of chemo.

I was always concerned about smoking cannabis in our apartment so I would always try and go outside to smoke or step out onto our balcony. I was smoking on the balcony one day when my neighbor above me started coughing and then starting singing the Deep Purple song Smoke On The Water. I had never considered that when I smoked on the balcony that it wafted right upstairs into the apartment of our neighbor. After this incident I went to the apartment manager and explained my situation to her and was surprised to learn that because I had my Medicinal Cannabis license the best place for me to smoke was in the apartment with the windows closed. I had always assumed that smoking in the apartment would get me in trouble but it was explained to me that because I had my license there was nothing that the apartment manager could do about it. From that day on I smoked with confidence in the apartment and kept the windows closed, I never heard the neighbor sing Deep Purple again!

The chemo was accumulative, as each month went by my symptoms increased and I felt shittier and shittier. If you know anything about chemo then you know that it makes you very sick, you vomit often, lose your appetite, lose weight, lose your strength and muscle mass, lose your hair and sometimes you lose yourself. I not only completed the full 6 months of treatment after the doctor told me that I may only be able to finish 4 months, I kicked chemo ass, I was captain chemo!  As miserable as the experience was, although I was nauseous almost all the time I vomited less than dozen times, I didn’t lose any weight, in fact I gained 2 pounds, I didn’t lose my hair and I didn’t lose my mind, well maybe briefly. I kept a great attitude throughout the experience, I did everything the Dr told me, everything the nurses told me and especially everything my wife told me to do. I stepped up to the challenge and my wife stepped up to the challenge and we faced it head on and successfully beat that shit. 

In a way it was easy, I just gave in and put myself in the hands of others, I trusted that my Doctors and nurses knew what they were doing. I did everything I could, I gave it everything I had. 7 months after being diagnosed with stage 4 Lymphoma I learned that I had kicked cancers ass and that I was in remission.

July 26, 2016 was the day I learned of my remission.

Unfortunately, November of 2017 the cancer returned.