Dave Nitsche
2019 started out well enough, I had just got back into a running regime and was feeling good. And then, with no known reason, I started losing sight in my left eye. I went to the optometrist and was told it was a detached retina. So I got myself to the hospital right away and it turned out it was not what they thought. In fact 8 physicians didn’t know what was going on with the eye, but by this point I had lost my sight in that eye.
Over the next month, having very high eye pressure and seeing many specialists it was determined there was a fluid build up behind my eye. The doctors drained it but within a day it was back and the pressure was back up as well. The doctors sat me down and said “You have two choices, you can live with this for the rest of your life, with no sight in your eye but still have headaches or you can have the eye removed, and not have headaches anymore.” On April 8th 2019, I had my left eye removed. At that point, I didn’t even know I had cancer and was still running a fair bit on a weekly basis.
The fluid behind my eye was tested and it turned out to be cancerous. I was sent for further testing and to see a lung specialist after a scan, and they drained approximately 1/2 litre of fluid out of my left lung. I was then sent to an oncologist in May, who informed me that I had stage 4 lung cancer with the EGFR exon 19 deletion. This was all very quick and sudden. Within a month, I had progressed from planning my summer of potential running races to having my left eye removed and getting a diagnosis of stage 4 lung cancer. Given I was a very active triathlete, runner and cyclist, and had no previous serious health issues, the diagnosis came as a massive shock to me.
I started treatment the day I saw the oncologist. I remember being provided a big package of information, which I put aside for about a week, as I was still in shock and processing all this new information. Overall though, the process from diagnosis to treatment was really quick, and I know that I have a great team in Calgary taking care of me.
I was started on afatinib and did have quite a lot of side effects, but the treatment did hold the cancer at bay. I developed some lesions in my brain, and there was a discussion on whether I wanted to go for radiation. We opted not to because the lesions were quite small in size. About two months later, I was switched to Tagrisso. This actually took care of the brain lesions and after about a month and a half they were completely gone. The side effects were also a lot easier to handle than the afatinib, although I still some. It is sad to find out that the treatment is not widely available. For me it has been a wonder drug, because it crosses the blood brain barrier, which made it very effective for me and for which I am super grateful.
I am currently stable and the tumours in my lungs have shrunk significantly.
Join peer groups and talk to people that have the same diagnosis as you as it is a hard road to go alone. Most of all, do not get offended by the people that mean well but just plain do not know what to say. “
Currently, I am trying to get out as much as I can, when I do feel well. I am still cycling but not as much as I used to as I find it difficult with my challenged depth perception. The energy levels on some days are pretty low as a side effect of the treatment, but I’m still getting out there hiking with people. I try to get out everyday, helped by getting a puppy in the summer. This has helped a lot, not only does she ensure I get outside but she is also a great therapy dog. All the other dog owners in my local dog park have been super supportive of me getting out with her, and if I’m having a bad day and can’t get out with her they take over for me, which is awesome!
I used to be a very active runner, running probably four to five times a week. Now, if I get out once every two weeks that is fine as it is harder on my body, but it is awesome therapy to just be out there and good for ones mind. Thanks to the treatment I have been able to still have a good quality of life.
My hope for the future is for more funding for lung cancer, which some may not realize is one of the most deadly of cancers. I would also like to see Tagrisso become available across Canada for lung cancer patients. I have friends online that are fighting to access it with very little success. I would also like to fight to end the stigma associated with lung cancer. Remember, if you have lungs you can get lung cancer. You can be fit and lead a good healthy life and lung cancer can still happen to you.
My family and friends took my diagnosis well and have been quite supportive. I have also gotten a lot of support through lung cancer groups and support groups online such as Cancer Connection and especially The Howling Group on Facebook, a group for men with cancer.
My advice to patients is to look for associations and groups within their community that provide support for cancer, such as Wellspring, which is across Canada. They have provided by far some of the best resources I have had since my diagnosis. Join peer groups and talk to people that have the same diagnosis as you as it is a hard road to go alone. Most of all, do not get offended by the people that mean well but just plain do not know what to say.
Finally be your own advocate and trust your oncologist and your team. They are there for you.
LIVE!!!! DON’T WASTE YOUR CANCER
