I posted my last blog post early this morning and then shared it on Facebook. My WordPress app on my phone greeted me with this morbid bit of analytics:

While it’s encouraging that my little bitty travel blog is getting tons and tons of new readers and traffic, it’s still a bit dark when I think about why.

After yesterday’s appointment with Dr. Harmon, Healthpartners immediately scheduled a PET scan for Friday and an appointment with an oncologist for next Tuesday. Later in the afternoon, they informed me that Dr. Harmon forced them to reschedule the appointment to today (Tuesday morning) instead. The oncologist they scheduled me with was Dr. Rabenau (Profile) who received her medical license last year.

Considering I have a “rare” type of cancer, I wanted to see someone with more field experience so I cancelled the appointment online and my dad stayed up until 3:30 last night doing research on doctors that would be better suited for me at the U of M, Park Nicollet, and at Mayo. I did ask Dr. Harmon yesterday about his thoughts on getting a second opinion. He said that if I were his son, he would send me to Methodist in SLP because they’re all very qualified and will take care good care of me as they have a mission for “less sleepless nights” in terms of making sure their patients get seen as promptly as possible.

Dr. Wilkowske called me this morning at 9 saying that he doesn’t remember the last time that he personally called a patient but he urged me that with my aggressive form of cancer, I needed to immediately meet with Dr. Rabenau right away to get tests scheduled and stuff. He was her boss and said that while I may hesitate that she just got her board certification last year, she’s the best suited for the job since she’s more familiar with odd cases of cancer than the older doctors.

I reluctantly agreed to attend the 11am appointment. At this point, I hadn’t eaten breakfast because I was wrapping up my blog post but figured I may as well not eat if it would increase the chances I could do any tests today that required fasting.

My dad and I arrived at the Frauenshuh (Frown-shoe) Cancer Center at Park Nicollet for the appointment and I immediately liked it because they have a machine that makes my favorite ice cube.

I call it “goose poop” ice.

We met with Dr. Rabenau who was really nice, she sounds like a Minnesota mom with a thick accent. Her and her team just hammered me with information for the next hour and a half. My head was literally spinning with everything that she was telling me.

I’d like to keep people up to date on what the plan going forward looks like so I’ll do my best.

There isn’t an official name for my type of cancer as it’s a mixture of different types that vary. The best way to describe it is a malignant yolk sack tumor, stem cell tumor, or germ cell tumor.

Here’s a description I found about it:

A yolk sac tumor is a rare, malignant tumor of cells that line the yolk sac of the embryo.
These cells normally become ovaries or testes; however, the tumor can also occur in areas such as the brain or chest.
The cause of a yolk sac tumor is unknown.

They wanted to schedule 3 tests for me today: brain MRI, testicle ultasound, and abdomen/pelvis CT scan.

Because Derek is such an insufferable jerk and growing so aggressively, he is very susceptible to chemo therapy. There is between a 70%-80% success rate for this type and the doc is going to focus on CURING it, not just treatment (her words).
Chemo will be a very strong cocktail of poisons, they will be doing a BEP chemo regimen: bleomycin, etoposide, and cisplatin (for my medically savvy friends).

Risks with chemo are: serious infection; which could lead to death, permanent hearing loss, and nerve damage….but you know no big deal. Doc said that the benefits greatly outweigh the risks but I still have to be aware of them. Joanna said that I need to be careful about visitors as they could carry potential for infection. I know that people want to come visit me, I’m going to learn some more about this process and do a specific blog posts for visitors.

The chemo schedule will be pretty crazy. She recommended 5 days in a row of chemo (Mon-Fri), then the following 2 Mondays for chemo, every 21 days for 4 rounds. After that, we’ll do surgery to remove scar tissue and the remaining tumor through a sternotomy. The first round will be outpatient which means that I’ll do 8 hours of chemo (ugh) for 5 days in a row and be able to go home at the end of each day. They will monitor how I do with the first round and might have me do the remaining 3 rounds in the hospital where I can’t leave during the 5 days of chemo as the risk of infection is high.

To give you an idea of how much information I got today, this is just part of the documentation they provided me.

There was a really awkward part of the exam where Dr. Rabenau asked me “Have you smoked marijuana?” MY DAD WAS SITTING NEXT TO ME! At least it wasn’t as awkward as when my sister took him to Mayo last week for his prostate exam and the doc asked him “How’s your sex life?”

Dad replied “Yes I knew, as kids these days….” and started to go on a schpiel but Dr. Rabenau realized what she had done and kicked my dad out of the room. She took advantage of the privacy and really strongly emphasized the importance of doing sperm banking as chemo risks making a guy sterile….man this is so weird.

We left the office at the end of the appointment and headed to the floor where I had to do my MRI. At this point it was past 1:30pm and I was STARVING. Summer was the tech that helped me with the MRI. I asked if I could take a picture of me in it but she said it would mess up my phone. Sorry blog peeps, you’re going to have to settle with me in the waiting room with an IV sticking out of my right arm.

I never had an MRI before so this was a new experience. Summer asked me what kind of music I wanted to listen to. I said NPR, she said the machine is so loud that I probably won’t be able to hear it so I need to pick something else. I chose oldies.

I laid down on the bench, they put headphones on me that were playing Neil Diamond, and put a cage around my head and tightened it to make sure I didn’t move as they were doing a brain scan. They pushed me into the machine and I closed my eyes as super loud mechanical sounds boomed around me. Imagine being at a really crappy EDM concert…wait imagine being at any EDM concert.

After 15 min, Summer pulled me out of the machine and she hooked up my IV to iodine or some kind of dye and then stuck me back in for another 15 min.

From the Heart and Vascular Center, I had to go to Radiology to do the other two tests. They said the CT staff were an hour behind so I’ll do the testicular ultrasound first. A nurse brought me into a room, dimmed the lights, and told me to take off my pants as she took out some pre-warmed lube from a cabinet. I don’t need to say anymore about this as a picture or two will say a thousand words.

The exam lasted about 20 minutes and I felt like Dr. Ray Stantz at the end of Ghostbusters 2

I came back into the lobby just to play the waiting game again for my CT scan. Chris-Ann, who was my radiologist during my biopsy walked into the lobby on her way to take a break. She gave me a hug when I told her the news and said that she was a cancer survivor herself. She reassured me that the port they’re going to place in my chest for chemo will be my best friend and told me that she I should accept the good days and enjoy them but also recognize the bad days and take them as they are.

They called me into the CT scan room and the tech that ran it didn’t do a very good job placing my IV. I mistakenly told Summer that I no longer needed an IV for the rest of the day so she took out the one she placed in my right arm. This guy placed a new IV into my left arm but he kind of did it forcefully and it hurt going in.

The scan started running and as I was staring up at the ceiling going in and out of the machine, the weight of the day finally bore down on me and I started crying silently to myself. The iodine dye stuff hurt as it was going through the IV, I was thinking of the possibility of never having kids in the future, how hard and long chemo will be, I was exhausted from being poked and prodded all day even though I haven’t even started the “hard stuff” yet, and I was tired and hungry since the last time I ate was 8pm the previous night and it was almost 5.

I’m not brave, I’m just going through the motions and showing up when and where people tell me to go and then they poke me full of needles or do tests on me. I’m about to put a bunch of poison in me hoping to kill whatever’s already killing me with the expectation of picking up the leftover pieces and rebuild.

I wasn’t happy at all at the end of the day. I had blood drawn and the crappy IV set on my left arm and the other IV put in my right arm. I’m not even counting the previous day’s worth of blood tests and IVs.

I sat in radiology after the CT scan thinking about this bible verse and the fact that I was destined to have this cancer from the very beginning.

Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.
Jeremiah 1:5 NIV

I don’t really know what to think of it? Just that I’m confused as to why God would form me with this kind of “defect”. I still stand by the fact that He is going to use my difficult time for the force of good. It’s just hard to be positive when I’m in the place that I am.

Radiology said I was free to go home and eat as Dr. Rabenau would call me later to review the results. Dad took me to Perkins and I stared at my plate quietly and ate my food.

I went home and Joanna got home from work a little bit after. She gave me a hug and I started crying because I didn’t expect my day to be so long and hard, especially without her being there. As the great gf that she is, she took me to get Izzy’s ice cream and walk Gold Medal Park over by the Guthrie to get my mind off things. It helped even though I started a coughing fit and threw up half my ice cream in the grass 🙂

We were on our way back to the car at 8:45 when Dr. Rabenau called saying she was finally on her way home from the office…AT EIGHT FORTY FIVE! She said she had very good news. The tests from today show that there is no cancer in my brain, testicles, or abdomen. She feels that she’s got enough to work off of to present my case in front of the tumor conference on Thursday with other oncologists and radiologists to get their input on her proposed treatment for me and that she would like to cancel my PET scan on Friday as it’s not necessary anymore. She said we’re ready to start treatment as soon as I am, either this Monday or next Monday. I just have to get the port installed.

The port is going to be this tube thing that gets surgically placed in my chest so that they can inject chemo fluid and meds as well as take blood tests from it without having to do additional IVs. I’ll have it for 4 months or whenever chemo is done. I can shower with it, but it’s just going to be uncomfortable to sleep and I’ll have a big nub sticking out of my chest.

So getting all those tests done today was totally worth it having all of this news by the end of the day. I’m sorry I had a really long post. A lot happened and I’m still processing it all. There’s a lot of work that still needs to be done like scheduling and talking with a 2nd opinion at Mayo, figuring out where I’m going to live during chemo, and finding out everything I can to make chemo less crappy than it already is.

I’ve gotten a ton of compliments on this blog, I’m really happy to share it all with you because I really believe that since I’m “lucky” enough to have this rare cancer, I’m sure it’ll help someone later on when they get it too.