Real Life According to Me

As many of you know, almost three years ago I was diagnosed with cancer. For the most part, I act like everything's cool and take everything in stride, but since my life is one medical mishap after another, I thought I'd be a bit more honest and share the real experience. You don't need to read this. I just needed to write this and let it loose so I can go back to the "everything's fine" mentality, because really, I have a whole lot of awesome in my life that shouldn't be wasted on bad memories.

I'm going to start at the beginning (at least in terms of THIS cancer, because there was that other cancer I had that is distantly related but yet totally different).

My Diagnosis Story
I was sick with a stomach bug (we all were) but my tummy was taking longer to recover. On top of that, I had a two month old baby, dinners to cook, a home to clean, and various other intriguing activities like washing my hair, doing laundry, and watching too much television (those first few months with baby were sleep a little, eat a little, watch TV a lot - I blame Medela and Philips Avent, lol). My husband and I went to the doctor to see what was wrong and I was sent home with Cipro. A while later, I was feeling worse and went back in, learning I had c-diff. I'm not getting into the logistics, but basically after many phone calls, prescription refills and adjustments, and a visit to a specialist, I realized if I had c-diff, I wasn't on the right medication dosage in the first place, so no wonder I didn't get better, but because of this, I was treated differently which then led to the cancer diagnosis. I should be grateful, but those two months of antibiotics and having a tummy bug kind of sucked, especially since I also went back to work during that time.

My finding out it was cancer experience was kind of like a weird, "ok you thought you had a stomach bug, but it's not" moment. I was having pictures of my intestines made to seriously "see the c-diff," which I never really knew was possible. I could actually see my intestines during this process, totally awake (which is unpleasant, awkward, and not recommended). No one needed to tell me what I was seeing. It was right there, one tumor that looked fairly large and a smaller one nearby. I thought, "hrmmm, maybe everyone has these big nasty looking masses growing inside their bodies." My doctor's response, "Well that doesn't look good." Nice.

Before leaving the office, I was given words of encouragement, like "it's not necessarily cancer" and "probably not yet cancer, but could become cancerous," and "it's not that big." Sure, sure. I went home and thought I'd have 24 hours to think about my next step but the doc called much faster and said it's cancer. Again the, "don't worry, it's not that big. Definitely early." Yeah, I'm buyin' that. It was c-diff yesterday and a stomach bug two months ago. Before that, it was nothing because I was just fine.

It was about this time that I actually stopped having stomach bug symptoms. Perhaps divine intervention, perhaps coincidence? Either way, good timing because I had about 10 days between diagnosis and surgery to enjoy my life, sort of.

Diagnosis of cancer is actually not that simple. There are stages and what I call sub-stages, which are like new stages but the main stages were already defined and someone decided not to reinvent the wheel so instead of Stages 1-10, there's a Stage 0 (because that makes so much sense) and my favorite, the Stage IIIa, which is better than b but kind of a big step from Stage II, which I think has an "a" and a "b" as well.

When I was diagnosed by the GI specialist I'd seen for c-diff treatment, he was pretty confident to say it was Stage 0 or I, but admittedly he isn't an oncologist, nor a pathologist, there were no CT scans yet, and no surgeries in the immediate future, so if I went with that, I probably would have waited a while to deal with this mess. Thankfully, I had a "slow growing" cancer, perhaps having had cancer for a very long time. You'd think I'd have noticed but I guess not. I'm oblivious to matters of personal health. Actually I've started to notice that my body doesn't react to pain, health crises, and general illness like normal people, but that's for another time.

My GI doc sent me to a surgeon in the cities who also suggested I don't have to rush into anything and scheduled some tests that had I ever followed up on, would have taken a while to complete, so I may have been looking at 1-2 months out for surgery, assuming I didn't want to hang around with cancer for a while. It was slow growing, right?

I just didn't like the vibe from my surgeon. He's a smart guy, probably a great surgeon, but I just got this sense he's going to do x y and z before he'd even ordered a CT. That's creepy. He wasn't wrong, but I just wanted some tests first, to be sure there were no other options.

I ended up at Mayo for a second opinion on my own accord. None of my cities docs had Mayo connctions, though my amazing OB offered to help if need be. She's awesome. At Mayo, I had the usual Mayo red carpet treatment, and a likely diagnosis of Stage II cancer, before surgery. Stage II is cool because it's major surgery but no chemo. That means I can get on with my life in a couple of months and that's that. Clearly, that's not that for me though.

After surgery (a week after my Mayo visit, which was a few days after diagnosis in the cities), it was still looking good, until oncology came to visit and said they found it in a lymph node. One node. They took all the nodes in the area, dozens! And that one stupid lymph node had to be cancerous. Errrr.... not okay. I did my best to avoid chemo by being sweet and batting my eyelashes, but it's kind of hard to get out of the standard protocol for Stage III cancer.

So there you go. I went through a lot to get this diagnosis. CTs, painful tests, extreme fasting, disgusting "cleansing" drinks, xrays, blood work, appointments, and a surgery. It also cost so much money, you'd probably fall out of your chair if I told you. Just use your imagination.

Since then, I've also had a more serious bout of c-diff, nose bleeds, chronic and freaky low platelets with a high INR (dangerous), liver problems, long QT, allergic reactions to two medications, neuropathy, mouth sores (thankfully, just during one round of chemo), extreme weight loss, a toe nail fell off (killed my pedicure plans for a year), many ER visits, two or three ambulance rides, emergency surgery, two port-a-caths, one pointless surgery, diagnosis of medullary sponge kidney (though this is likely unrelated and just total coincidence), dozens of kidney stones, migraines up the wazoo, chronic motion sickness issues probably because of medications I take, and of course the damn prescriptions and having to eat and take medication on a strict schedule.

I've never really listed all that before. It's rather frustrating to see all these words I've written because I'm thinking about yet another, thankfully less serious surgery coming up soon and really it does seem that with me, one surgery leads to another. So let's assume I'll just have surgery 2-3 times a year forever. Then, if this really is it for a while, I'll be super happy, grateful, and ready to do something cool, like get a PhD or finally finish writing a book.

Yep, that's diagnosis, and a bunch of other stuff.

Next time, I'll share reality of the tests and procedures I've been through. Those are what I rarely talk about but often are the worst memories of this experience.