Kimberly and my dad came to the doctor’s office this morning with me to see Dr. Harmon about my biopsy results. He entered the exam room and immediately said that I had a Non-seminomatous germ cell tumor in the anterior mediastinum. Yup…your reaction is exactly how I felt when he told me.
The tumor that’s in my chest is malignant or cancerous. Just having this type of tumor is rare, the fact that it’s cancerous is more rare. My grad school classmates said it just shows the one of a kind of guy that I am.
Dr. Harmon further explained that because it’s not a type of lung cancer, it’s above his pay grade and that I’ll need to switch to an oncologist at the Frauenshuh Cancer Center at Methodist in SLP. From my understanding, the tumor was based off of dormant embryonic cells in my chest that I had when I was born and they just freaked out. There’s nothing I did to get it, I was going to eventually get sick no matter what.
He said that when he did the biopsy there was a lot of dead necrotic tissue which means that it’s growing very aggressively as it’s trying to replicate and grow. The bright side is that because it’s growing quickly, it should respond to chemo well. It’s the cancerous tumors that grow slowly that are a concern for people.
I’ve had a few friends ask what stage cancer it is and what my next steps will be. In my case, because they are planning on most likely doing chemo and then surgery, Dr. Harmon said that they didn’t bother staging this one, maybe I’ll find out from my oncologist next week. My plan for next steps is not to die…I’ll have a PET scan which is different than a CT scan (hehe pet/cat) where I have to regulate my diet for 24 hours of no caffeine, sugars, or carbs prior to the scan. On Friday morning at 6:45 they’ll pump me with sugar and use gamma radiation (I’m not making this up) to look at what organs absorb the sugar. Tumors also derive energy from sugar and so they’ll be able to see where the tumor has spread to. They’ll likely have to take a bone marrow sample by drilling into my pelvis and maybe a brain scan too in order to make sure that the cancer hasn’t spread to those areas. I’ve already started getting track marks from the blood samples and IVs so they may as well treat me like more of a pin cushion.
To set expectations, I’ll be doing 4 rounds of chemotherapy which are 4-6 weeks apart and then a likely sternotomy surgery to get the rest of the tumor out if they feel that chemo has shrunk it enough.
Dr. Harmon asked me how I’m feeling and I said again, I don’t feel like I have anything bigger than a cold. He said get ready because this is going to become a really big deal quickly.
We asked a number of questions to the doctor and then thanked him for his excellent care. After leaving the office, my dad kept trying to correct me in saying that it’s not cancer and that it’s just a malignant tumor (malignant = cancerous) and then he was quiet for a long time, probably 20 minutes. My mom met us in the lobby because she was running late from work and wasn’t able to make it to the appointment in time. When I told her the news, she had a hard time controlling her voice for a little bit. They’re taking the news really hard. I can’t imagine what it’s like to find out that your favorite child was just diagnosed with cancer.
I told some of my friends right away, they asked me what I was feeling after getting the news. So everyone knows, I was feeling hungry. It was 12:30, we went to Culver’s. Kimberly bought me a raspberry custard sundae.
After lunch, I felt the need to go to work and break the news to Jason and the rest of my co workers in person. I’m glad it did because he took me to HR right away to get my paperwork and leave situated.
Unfortunately, because I’ve only been at BI Worldwide for 6 months, I don’t qualify for The Family and Medical Leave Act (FMLA), which means that starting next month, work will not be able to cover their portion of my health insurance and I think I’ll be switching to COBRA. I don’t know what that means yet.
Next, I’m SO thankful that I randomly agreed last month to critical illness insurance from my company which was like $4 a month. HR said I just need to wait 10 business days and I’ll get a check for $10k due to my illness. This is incredibly helpful because my health insurance will be about $400 a month and my max out of pocket for insurance is $3,500.
Temporary leave pays about 80% tax free for about 7 weeks. That should cover most of my bills and expenses for the rest of the year. I’m actually going to do a dedicated post about bills and finances, I’m just too tired to dig everything up and do the math right now. I also have disability insurance from work and from Northwestern mutual that I purchased so I need to get those sorted out too.
Best case scenario, I’ll be done with chemo in 6 months and surgery at minimum a month and a half. That doesn’t account for physical therapy if I need it and just gaining my physical and mental strength back so I can get back to some semblance of normal.
Jason helped me pack up my desk and in the parking lot told me that he’s the type of person to keep pushing towards the next goal. With what I’m going through, it’s inspired him to slow down and smell the flowers.
Even though this situation is really terrible in the small picture, in the big picture I’m happy to continue motivate people and help them be their best selves in any way I can.
The gravity of the situation hasn’t really sunk in yet, but it does little by little every time I tell someone that I have C-A-N-C-E-R. It’s not lung, breast, thyroid, or testicular cancer. I don’t even have a name or type of cancer for it right now so people can even try to relate to it. I was telling myself before the news that it would be really anti-climactic that everyone’s pouring all of this love at me then later I find out that it’s a simple surgery and I can go back to work the next week. I guess now all of you guys are going to see what I’m made of :/
I’ve gone ahead and just named my tumor “Derek” so I have something to point my anger to. Derek because in Zoolander he had the “black lung” and I’m still coughing. My apologies to any friends named Derek, nothing personal when I say “Fuck you Derek!” as I’m referring to my tumor, not you.
There’s three things that I’m most concerned about right now: I’m putting my life on pause for probably a year, I’m slowly losing my independence, and my mental health state will need attention.
I’m such a meticulous planner. For example, I did a monthly estimate starting December 2015 of how much money I’d expect to have after paying tuition out of pocket each semester and where I’d land at the end of grad school. My final number ended up being $6,000 higher than my estimates. I’m a project manager for gosh sake, of course I’m going to project manage my life. With being sick now I literally have to take it a day at a time right now because I don’t know what the next doctor’s appointment is going to bring. Literally a week ago Monday, I thought I just had a cough.
Because of the biopsy, I’m not able to lift anything heavier than 10 lbs. Once I start chemo, my appetite is going to tank and in turn, I’m going to lose a lot of weight and strength. Having to ask for help for something simple like walking to the bathroom or brushing my teeth is starting to terrify me.
Thong, my friend and mentor made it clear to me tonight that I need to start preparing material on how I can strengthen my mental state. I have a lot of people praying for me, my doctors are going to treat my body, but my mind is going to be my own responsibility. Being bedridden for weeks or months is probably going to be a prison for me and just staying busy with electronics or other distractions will only last so long. I’m going to start looking for a therapist to help me talk through things as well as meditation exercises.
Early last week I’ve been told by people that they’re praying for me and they’re sending bible verses to me.
I have heard your prayers, I have seen your tears, surely I will heal you.
2 Kings 20:5
Trust in the Lord with all your heart
and lean not on your own understanding
Proverbs 3:1-7
At the risk of sounding ungrateful, right now it just sounds like noise because every other day in the last 7 days, I’ve gotten worse and worse news. I have a bible verse that I’ll share back with people:
Let beer be for those who are perishing, wine for those who are in anguish!
Proverbs 31:6
For those who have gone through this battle and then recovery, feel free to share what were some unexpected things you relied on to get through this tough period of your life.
With all these doctor’s visits I’m going to have to do coming up, I feel like I’m going to have to get to used to seeing this sight…
