Home From Mayo

We’re still on the road, almost home and I’m absolutely exhausted but I need to get some  stuff out of my head and on paper because I doubt that I’ll ever feel as humble as I do in this moment ever again.

The Mayo Clinic was amazing.  I will likely detail their awesomeness in a later post, but I’ll touch on a few things this time.  The first thing that should be known about Mayo is just how efficient they really are. Blood tests, CT Scans, Radiology… all of those things seem pretty routine, right?  At home, those things take weeks to plan, and hours of waiting and sitting around in waiting rooms to accomplish.  At Mayo, even when there’s 400 patients at once, you only wait five minutes.

My Oncologist at Mayo is Dr. Harry Long.  A few googles of his name and you’ll know he’s a legend, and he is not only an expert in the field of Oncology, but he is a Professor of Oncology.  His mind, his Clinical Trials, his research along with his colleagues are what will define the future of Oncology and Cancer Research.

Before I get to what he said, a few more things…

Rochester, MN is absolutely beautiful.  On Sunday, our first day there, Mandi and I wandered around inhaling the beauty and wonder of the place.  It’s literally a massive campus with a beauty that’s unmatched.  Sunday, the campus was deserted. No doctors, no patients wandering about.  It was really easy to forget that we had a purpose for being there.  The artwork in the Gonda Building, the sculptures scattered throughout the campus coupled with the fact we just got in from a ten hour drive, it was easy to completely forget that I was there because I’m sick.

Monday morning, it started to sink in.  Walking to the Clinic from the hotel, we passed probably 500 people.  You can tell the difference between who works there and who are patients.  It’s probably one of the most haunting experiences I’ve ever had.  The only comparable experience that I can come up with was the day I visited the footprints of the World Trade Center this summer, and felt the loss and heartaches of not only all of those lives we lost on 9/11, but also of their families.  It felt like that walking to Mayo on Monday morning.  Those who work there are all upbeat people with positive attitudes, but you can see in their eyes that they have become jaded.  You can see that they don’t see the faces of the people on the street who are not their colleagues.  They have a purpose, and it’s to work on the disease.  They accomplish this by working on the patient.  Don’t get me wrong – all were extremely pleasant, but you can see them distance themselves from the patients because a heart can only take so much death and unexplained loss of so many good people.

Those who do not work there – well…I’m not sure if I can actually adequately describe it.  They are fighters, and at the same time, they’re terrified.  They’re strong, but their bodies are weak.  They are there because it’s their only hope.  Their faces and eyes each tell their own story.  At Mayo, people without hair are not the minority, they’re the rule.  At Mayo, everyone has a story, and I had the pleasure of hearing several.

I met a few really great people.  Charlie is: 69, Rare Liver. He’s on his 5^th recurrence.  He told me that the leading cause of dying is birth.  It made me laugh.  He told me that the chemo is the only thing keeping him alive right now.  Arlene is 54, Ovarian.  Lately, her bones have been spontaneously breaking for no good reason.  She was there to see if her ovarian metastasized to her bone.  I met a small child, who I don’t actually think was a child at all. I think he had a growth anomaly that has caused him to be smaller than my 10 year old son, and he did not look well.  This boy asked ME, how MY day was going.  Selfless, brave, heart of gold with the purest of intentions – to live. All three of them have yet to leave my thoughts.

I also met a Gynecologist who was there with a liver cancer.  His brother has stage 4 liver and is terminal.  I keep thinking how hard that must be…you decide to be a Doctor so that you can make a dent and help save the world.  Then, you yourself, and your brother and best friend both get sick, and there’s not a damn thing you can do about it.  It’s surreal and heartbreaking.

I still don’t have the answers I’m looking for. I thought I’d have them by the end of the day, but alas, tomorrow’s the day.  I saw Dr. Long this morning.  He hadn’t looked at my slides yet.  But, based on my pathology from Sparrow Hospital in Lansing, he told me that my prognosis is one of two things.  Here’s where it gets confusing, but I’ll try to explain this as best as I can:

East Lansing diagnosed me with Ovarian Cancer: Borderline Ovarian Tumor, Stage 1c, which essentially means it’s in both ovaries and beginning to metastasize.

The problem with this is that the type Borderline Ovarian is extremely rare.  As in, it’s rare enough that I would need to win a 1 in 200,000,000 chance lotto ticket to get it.  Dr. Long said it’s either exactly what they said, or it’s Invasive Ovarian, Stage 2b.

The differences are vast.  If it’s truly borderline, there are perks, and major issues.  Because there are so few patients who have Borderline, they don’t really know much about it.  No one does.  It metastasizes at will, and chemo has not proven effective on it to slow metastasis in the clinical trials that they have been able to do.  The only option for these tumors is to treat them as they pop up, and they require surgery every time.  The perk is I don’t have to do chemo if this is the truth.

If it’s Invasive 2b, well, then that will require 3-6 trials to begin with of chemo, and well…that too is subject to metastasis and it’s terrifying.  He had 3 separate trials that he said he would be looking at for me if that’s the case, should I decide on treatment out there rather than here.

Of the two, I’m not sure which I’d rather.  I’m probably more scared in this moment than I’ve been since I learned about all of this.  Cervical was the very least of my problems, it turns out. To have the borderline is terrifying because I have no idea how many surgeries my future will hold.  They know so little about it, there’s no way to treat it other than cutting you open and surgically removing the tumors every time, and you’re not clear until you’re 8 years without a tumor.  Because of how rare it is, it makes me think that Sparrow’s pathologist was mistaken in the diagnosis.  The Invasive is far more common and Dr. Long is not taking Sparrow’s word for it.

At Mayo, the doctors cannot go home until their work is done.  And they’ve had those slides since Monday morning.  Dr. Long himself put a rush on the results, and Mayo’s pathologists still had them as of 6pm EST tonight.  It’s one of the two.  I’m not a candidate for clinical trial for the Borderline if that’s my problem because my ovaries have already been removed.

Remember in my last post how I was whining about the pseudopapillary reactive clusters in my pelvic wash, and that my doctor told me that the pelvic was clean and I was like…um…..it doesn’t look clear to me based on this path! So yeah that’s metastasis.  Those cells are there because of when the original rupture of the first cyst that took me to the ER in the first place.  There are still more of those in there, and those will cause tumors.

The rest of my organs and blood work looked great.  All my other organs are awesome.

For Genetic Testing for BRCA1/BRCA2, I have to do that at home.  It’s going to take some doing to get it done.  I have to clear it with my insurance to do it because it’s a three thousand dollar test.  Then, from there, that sets the stage for my siblings and my children to be tested.  If I’m BRCA positive there’s a high chance my kids and my siblings also have it.  And that will cause problems for them and their children.

I also have to have some stuff done with my tush.  There’s some issues there with tissue that didn’t show up on the CT Scan, but that Dr. Long found in my pathology from my previous stuff with my OB/GYN.  We’ll need to biopsy those as well.

So…I guess that’s where I’m at right now.  If it’s borderline, I’m essentially in remission until the next tumor pops up.  If it’s invasive, that grows much faster than borderline, and chemo will need to start at the end of my 6 week post op from the hysterectomy.

I need to cry. I need to just cry my eyes out and get it over with, yet I’m afraid to do that until I know all of the truth, regardless of how shitastic it is.

The good news is regardless of which one I have, 5 year survival is 95%.  That’s pretty good.

“Sarabeth is scared to death, because the Doctor just told her the news.

Between the red cells and white, something’s not right but were gonna take care of you.

Six chances in ten it won’t come back again with the therapy we’re gonna try,

It’s just been approved and it’s the strongest there is,

I think we caught it in time…”

Tagged as: brc1, brc2, CA-125, Cancer, Cervical cancer, doctors, genetics, mayo clinic, ovarian cancer