Your Best Advocate is You

Janet Wohlmacher, Lung Cancer Survivor

I was diagnosed with stage IV adenocarcinoma right before the COVID-19 pandemic in February 2020. Prior to my diagnosis, I slipped while walking the dog and thought I pulled a groin muscle. When it didn’t heal, I saw a doctor, who sent me to physical therapy. The PT made the pain worse, to the point that I was crying at the PT office. I told my doctor something was going on, but he wasn’t convinced. My insurance would not approve an MRI. I was so convinced that there was something wrong, that I was willing to pay for an MRI out of pocket.  My doctor then spoke to my insurance company directly and they approved it.

Ultimately, an MRI showed a cancerous lesion in my leg that spread from somewhere else in my body. Further testing showed lung tumors, a kidney tumor, and two brain tumors. The lesion in the leg was so bad, they said my leg was in danger of breaking; I had a total hip replacement 9 days after my initial MRI results.

Cancer is horrible no matter when you get it, but even more challenging when you have additional limits set on you by a global pandemic. I had brain surgery on March 25 to remove the larger tumor in my head. Because the hospital was at the height of COVID admissions, my husband was the last visitor in the recovery room before they banned all hospital visitors to lower the risk of COVID spread. I spent less than 36 hours in the hospital after my brain surgery, as opposed to four days in the hospital for hip surgery, which was pre-COVID.  

I wasn’t nervous about catching the virus when I was in the hospital. Everyone was so cautious, and I had confidence in my doctors. The worst part was having to go to my doctor’s appointments by myself. Early in the pandemic, I still was using a walker because of my hip replacement, and I would have my purse and other things with me and have to hobble through the hospital alone. Luckily, the doctors were very gracious about letting my husband listen in on appointments via speaker phone or FaceTime.

After my surgery, I was put on a treatment that targeted my EGFR mutation. While it drastically reduced the size of my tumors, it left me with a head to toe rash that eventually peeled, starting from my face and moving downward. They determined it was an allergic reaction and took me off the pill for a few weeks. We tried again, at a reduced dose, and after a few days, my hands started to peel, and I knew I couldn’t continue. My doctor tried to convince me it had only been a few days, and I should try a bit longer, but I was done. The rash made me cold like a burn, and I would sit in a chair covered in blankets and shiver. That was not my idea of living. I want survive lung cancer, but not at a loss of quality of life.

I stopped taking medicine. When he realized I was pushing back, he finally gave in and said: “It’s your body; you make the decision.” I went 6 weeks without treatment while my skin got back to normal before starting another targeted therapy. I had some growth in my tumor, but my doctor attributed that to the gap in treatment. I was also put on an IV chemo, which has been pretty successful.

My whole experience has taught me you have to be your own advocate. You have to do your own research and know your own body. If something feels wrong, it probably is. You should listen to what your doctor tells you, but you should also do your homework and make your own informed decision. That is how I made all my decisions related to my treatment, and I feel good about all of them.

If you don’t feel good about what your doctor is telling you, you should always get a second opinion. However, go with your gut. A second opinion doesn’t mean it is the right opinion. I got a second opinion before my brain surgery. This doctor told me I shouldn’t do the brain surgery, and I should let my first targeted therapy do its work. This advice and this doctor just didn’t feel right to me. I choose to have the brain surgery. Right after that, I experienced the head to toe rash that forced me to get off the targeted therapy. As it turned out, I couldn’t stay on the targeted therapy like the second doctor recommended and the brain surgery was the right decision for me.

I often joke that I need to write a book about what not to say to a cancer patient.  As someone diagnosed with lung cancer, I can tell you that some of the things family, friends, doctors, strangers, etc say are so odd. The most common question everyone asks is: “Are/were you a smoker?” When I say “No,” they give a little surprised “Oh.” It leaves the impression that if I had, I somehow deserved it because I chose to smoke. Nobody deserves lung cancer.

When something like a cancer diagnosis happens, you expect certain reactions or support from family and friends in your life. My advice would be to expect the unexpected. Some were exactly as I thought they would be; some who I thought would be there, were not; and some who I expected very little contact from came out of nowhere to offer help.

I’m grateful for all the support I’ve received and I think some people just don’t know how to handle bad news. Because of that, I would never directly make my feelings known to those people. It does make me even more appreciative of the efforts I didn’t see coming.

If you’re struggling to find something to say to a friend or family member diagnosed, you’d be surprised how far simple, supportive comments can go. In fact, the simpler the better sometimes. I’ve gotten texts like “Need anything? I’m going to the store” or “Just letting you know I’m thinking of you.” It might not seem like much, but it can mean the world to someone dealing with cancer.

I know I’m lucky. When I was first diagnosed, I remember my doctor asking what kind of support system I had. My answer was “the best.” He told me he was glad to hear that because a lot of people don’t have that.  I’m so grateful to have my family and friends. They are so supportive and are the reason I made it through this past year.

This year, the holidays were different than usual, but so much more meaningful. You take it for granted when you’re not worried about being there for the next one. That’s what keeps me going, though. I don’t want to give up and miss anything. That’s why I keep fighting.

 

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Janet Wohlmacher with rescue dogJanet Wohlmacher is a former teacher and animal rescue volunteer. While walking her dog one day, she slipped and thought she pulled a muscle. After increasing leg pain, she was eventually diagnosed with Stage IV Adenocarcinoma lung cancer. She shares her story because she believes every cancer patient’s experience is unique to themselves, but hearing other stories can be informative and give you a new perspective as you navigate through your treatment. Janet likes to travel and spend time with her family and friends, but most of her time is spent taking care of her seven rescue animals.

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