Tips from My Personal Beginning
So, a lot of people ask how I found out how I had lung cancer since I didn’t smoke. Well, that is an excellent question. I was having migraines for 8 continuous months. My head felt full, not like a normal migraine. I felt like snot was trapped. I tried everything, from a nebulizer to nettie pots. But, I finally realized nothing was coming out.
Losing my eyesight then depth perception
One night, while Christmas shopping in Brunswick, GA, I totally lost my depth perception. Then, I began seeing only swirly colors. I wasn’t able to find my phone to call for help and was in a dangerous neighborhood. Praying to God that my eyesight would return, I began to cry uncontrollably. Eventually, my eyesight slowly came back, but my depth perception did not.
My daughter’s father was driving Karley to Atlanta for Thanksgiving break. I was going to drive up on Thanksgiving Day. When returning from work to pack, I jumped a curve and blew out a tire. It was the day before I was to leave. I finally found a tire shop that was open. My tire didn’t match the other tires, but I didn’t care at that point.
I finally drove to Atlanta, despite my depth perception, determined to get another opinion. After knocking over my first wine glass on Thanksgiving, I knew something was still wrong. One of my family members began calling me a pill popper and using that as an explanation for my behavior. Yes, I was popping pain pills to control the intense pain.
What the MRI revealed…
The day we were to leave to head home, I couldn’t get up. I could barely see and was vomiting white stuff. While at my dad’s I could barely move but was supposed to take Karley home (a five hour drive). I had been advocating so much for myself, I was giving up because of the pain and letting my family take over.
My mom arrived shortly and took me to the local hospital, where they found a tumor after performing an MRI. Once the brain tumor was found, I was transferred to the main hospital in downtown Atlanta for brain surgery.
I don’t remember anything until I woke up. Days had gone by. I missed my daughter but felt so blessed they removed the tumor. Then, they came in and let me know it wasn’t just a brain tumor. It was cancer from somewhere else in my body. Eventually, it came back the cancer was from my lungs.
My oncologist wanted to start chemo immediately. I wanted more opinions. I got two additional doctors to recommend treatment and went with the two that agreed. As of today, I’m still on that treatment with no sign of cancer, just two sleeping tumors. But as with all targeted therapies, one day it will wake up my cancer cells and we need a new treatment plan then.
My advice to the newly diagnosed
Now I help mentor new patients and try to lead new patients to a social media site that has advice depending on their specific disease. So, I wanted to just give a small bit of advice to new patients. These do not reflect the views of LungCancer.net and I am by no means telling you not to listen to medical advice. These are just some tips…
- Believe the diagnosis, not the prognosis – the stats are old on the internet and will do nothing but depress you.
- Get a second opinion, and if it’s not the same, get a third. Not all oncologists are able to keep up with new medicines.
- Pick an oncologist that is open to speaking with other oncologists regarding your case. They need to not think they are “correct” all of the time and two heads are better than one.
- Try to be as personable as possible with your oncologist. It will make them try harder and research more.
- Probably the most important point; get tested for genomic mutations. It can make all of the difference in the world.
- Don’t be too proud to accept help. It takes a village. I had an incredible one and they were able to raise enough money for me to survive 6 months with no income until SSDI was able to take over.
- Be your own advocate, make sure you are armed with plenty of questions (and I record my conversations so I can remember everything). You can find these by taking to social media and asking lung cancer communities for help. They are tremendously helpful, they have been there.
- Rest when your body tells you to rest. It’s important. Your body repairs itself during rest.
- Don’t lose your faith. Attitude can be so important when fighting this. I really believe this.
Our lung cancer family
I have an open letter to new patients on my site, which you can check out here. But, I’ve tried to create a condensed version here, along with the story of my lung cancer discovery. I hear this same story far too much. We have to make a change, for our children and future generations. Your lungs have no feeling, so you never usually find out when it’s spread to stage 4.
Anyway, if you want to read more about my beginning tips, try looking back at my open letter to lung cancer patients. It’s my favorite way and usual spill when talking to new patients. The most important lesson I would love for you to take away from this piece: we are family and we are here for you. Don’t give up. It wasn’t the end of my world, just the beginning of a new one.