Glimpses of Normal Life
I went and got a haircut this week. No that was not meant to be the single most boring start to a blog post in the history of cancer blogging – it was meant to make a point.
I was excited to go get a haircut! Why? It has been months since my last one. I was largely bedridden and 100% housebound (aside from medical appointments) for a couple of months last winter-spring, making haircuts forgotten & abandoned. I was also 100% focused on my own personal cancer treatments/planning and the launch of the MSS CRC Clinical Trial finder – so it kept getting pushed down the to-do list, never to be done. But this week I did it! AND I LOVED IT! Why? It was a sense of normalcy. A return to my pre-disease take-off life where maybe I had cancer but it was just spots on a scan. I sat in the barber shop waiting area just like everyone else. I chit-chatted with my long-term barber Johnny just like everyone else. I felt like a normal person just like everyone else. For an hour there I could suspend thinking about cancer and just focus on being a normal human being doing something perfectly normal. One thing I think most caregivers/friends/family members don’t realize is that it is actually the little things like this that can matter the most to a patient. So if you want to treat them to something – it doesn’t have to be something extravagant – instead treat them with a short return to NORMAL LIFE! I was thrilled to be sitting in that barber chair – seemingly small things can mean so much!
But then cancer intruded. Luckily towards the end of my haircut. One of the chemo drugs I am on is “irinotecan”. It’s slang name is “I run to the can”. While Johnny was finishing up I could feel the faint rumblings in my GI – chemo had realized I was enjoying a moment of normalcy and was preparing to fight back – and boy did it ever. I finished up the haircut, promised Johnny I would see him soon and jumped in my car and drove the short drive home as if I was in the San Diego Grand Prix. I had a double-whammy. First I had diarrhea. Then I vomited. Then I felt better. This is the intense daily highs and lows of Stage IV life.
This all happened on my “chemo off-week”.
That is a big change that has occurred recently and has taken some psychological work to deal with. I no longer have an “off-week” from my chemo. My chemo side effects now stretch all the way through week #2 to the next infusion. There are no breaks from the side effects. But medically, I can’t take a break from chemo. The side effects are “tolerable” (you get remarkably used to vomiting and diarrhea – my meds reduce them but don’t stop them) – and it obviously beats the alternative! Chemo is currently keeping me alive. This is another reason why I cling to any sense of normalcy I can find – even something as small as a haircut…
4th of July Excitement
Last week had been exciting to say the least! That Friday I awoke to find my left leg & foot swelled up like a balloon. Later in the day, the right leg joined in. I made an ignorant mistake that could have had fatal consequences – I didn’t realize the potential seriousness and didn’t call my oncologist immediately… In the afternoon I told my oncologist about my swelling in passing. He told me to go to the Emergency Room immediately. Working with my oncologist for 5 years he has never told me to go to the ER immediately for anything so I knew it must be very serious. I jumped in Uber and went to the ER. They searched for signs of pulmonary embolism with leg ultrasounds and chest x-rays and didn’t see any so they sent me home. The weekend was normal except in hindsight I was experiencing clinical signs of having a PE – walking to a restaurant on Saturday night, I was out of breath – it felt like I was walking at high altitude. I attributed it to general weakness caused by the cancer after a long busy day. In hindsight I was wrong.
By chance occurrence, I had a CT-scan scheduled for Sunday. It showed some great news! It looks like the Y90-SIRT procedure I did in May has significantly reduced the amount of cancer in my liver! The rest of my spots were stable – my FOLFIRI + Erbitux treatments are still working! Woo-hoo!
Now the bad news… the higher resolution of the lung CT (compared to the ER’s chest x-ray) showed a pulmonary embolism. A planned 30 minute doctor’s appointment unexpectedly turned into me being whisked off to the ER again… This time including an overnight stay in the hospital. The treatment for PE is self-injection of Lovenox (Enoxaparin sodium) twice a day for a least 6 months but probably indefinitely. As its mechanism of action, Lovenox binds to antithrombin to form a complex that irreversibly inactivates clotting factor Xa. Throughout my hospital stay I basically felt OK – my main concern was getting home for our 4th of July BBQ and fireworks. They promised I could do that if I was stable overnight.
I was discharged about 3PM on the 4th. Friends from the BBQ drove to the hospital to pick me up and I immediately had a cheeseburger off the grill when I walked in. Once again there was that sense of normalcy to cling to as my memories of my hospital stay quickly faded from view. What was the highlight of the 4th for me? Getting out of the hospital? Nah… Being with friends? Close but not quite… My 9-year old, who really wants to be an independent teenager right now, laying down her nascent independence and putting her arm around me for the entire fireworks show. That was the highlight.
Yet again that experience was the jumble of Stage IV life – one minute being told everything was fine… then being told no, you have a life threatening PE… then being told in ER that I will need to be hospitalized… followed by a perfectly normal 4th of July when I got home. If your head is spinning that is fine – my head was spinning too!!
A key part of Stage IV Life is learning how to juggle these constant changes from sickness to normalcy and back again. Like a new sailor, learning how to get your “sea legs” to handle the at times violent & sudden unexpected thrusting between the two. But humans are remarkably versatile! Most of us can gain our sea legs in no time at all… In the beginning of my diagnosis, most of my time was still completely normal with the occasional thrust into cancer life on chemo days etc. But as I have entered into later stage disease, that is reversed and most of my time is now cancer life with (fortunately) the occasional lucky glimpse of normal life.
Something as exciting as a haircut.