Jennifer Goodman Linn You Fearless

July 7th – I am So Tired of Dealing with This!

The last few weeks I have been very sad. Although I try to put on a happy face most of the time, it would be unrealistic for me to be cheerful all of the time. Dave and I have made it our intention to not give in to cancer. We refuse to change our lives because of this horrible disease. We go to work, we socialize with friends and we get chemo once a week. It has just become part of our lives…something that we need to fit in to our busy schedules. Although we prioritize my health, the minute we begin to accommodate it too much, it means that the cancer has won…and we refuse to let that happen.

However, living our lives this way does not mean that there aren’t moments or days that we are very in touch with how much it SUCKS. How much I HATE the fact that every Friday afternoon I have to show up for chemo. How much I HATE that the drugs’ side effects have made me bald and bloated. How much I HATE that when other people are taking summer Fridays to play golf or go to the beach, I will often have a medical test I can’t miss. I don’t show my anger towards this disease too much but it is very real. And stopping my treatments is not an option.

The irony of this whole situation is that I am kicking cancer’s ass for the 2nd time. My latest CT scan revealed that the tumors have dramatically decreased in size (in fact one isn’t even visible any more). Apparently I have again defied odds and responded in the top 5% of patients with this disease. I can’t help thinking that I SHOULD be happy about this. I SHOULD be celebrating that I’ve avoided death for a 2nd time. I SHOULD be even more willing and ready to face the treatments ahead because the fear of how the tumors would respond this second time around is somewhat behind us. But this is not how I feel.

I realize that in the grand scheme, I am extremely lucky. Isn’t it great that the biggest thing I have to worry about is some minor side effects from the chemo? But, in my world, it is far from over. Perhaps we can stop worrying a bit but the Dr. told me that I face up to another year of chemotherapy to increase my odds of the cancer not returning. And because I will need so much more chemotherapy in the future, I need to get a mediport which is a medical device that is inserted near your collarbone so that it is easier to administer chemotherapy (after 10+ months of chemotherapy, most of my veins have hardened making the past few months of chemo very hard…on average, I am pricked 3 times before the nurses can find a good vein). This device makes chemo easier but it is cosmetically unattractive (looks like a bump under your skin) and makes you realize what you are dealing with every time you look in the mirror.

So, while the news is “good”, I am more aware than ever of how much longer I will have to actively deal with this. And some days, I just don’t want to anymore.

This is where all of you can help me. I feel like I have not done a very good job this time around communicating what I need. When I relapsed in February, I wanted very much to believe that the 2nd time around would be easier than the first. With a new job and an increased understanding of the disease, Dave and I wouldn’t even really notice that we had to deal with it. But I am quickly learning that the 2nd time around is not easier at all. In fact, the novelty has worn off and it is much harder. Physically, I am feeling fine. Emotionally, I need more support.

I’d like to think that people have not been reaching out as much this time around because they have been respectful of my feelings. They don’t want to say the wrong thing or make more out of the situation than Dave and I originally communicated. Well, the truth is, the situation is bigger and harder than I had imagined.

I miss the letters, the phone calls, the emails, the care packages. I miss the constant messages of support and admiration that made me realize that even though this sucked, I had a ton of people “going through it with me”.

I also think that it is human nature to get “numb” to something if it lingers for a long time. The novelty of my having cancer has worn off on everyone to an extent….Dave and me, our families and our friends. It is often easier for people to assume “she’s OK…she’s been living with it for a few years now” than to accept that every single day is a challenge. It’s easier sometimes not to check in because that makes someone accept and realize that the discomfort or fear they have checking in is something that Dave and I have to live with every day.

After my first bout of cancer, people asked me “what was the hardest part?” and I say, without hesitation, the first six months after I was told I was “cancer-free”. Most people don’t understand this…”Weren’t you happy and relieved? Shouldn’t that be when you were happiest?” Although it is much easier to believe that, the truth is I still felt very raw from the experience and still felt like I was living with the disease…but most people had moved on. It was easier to think “Well, Jen’s good now” then to truly accept that my odds were 50/50 of the cancer coming back and that it was far from over. It was easier to try and “forget” because having to engage in the truth is very painful. And most of us don’t have the energy to deal with this for more than a little while, forget about many years.

Well, the truth is I wish I had the privilege of “forgetting” for a little while but I can’t. The fight is far from over and because the battle lives within my body, I don’t have the option to sit on the sidelines for a little while. I wish I could…it would be much easier that way.