Who I am and why I'm here...

In 2014, I turned 40.  I had decided that 40 was a good time to try and make sure I was a relatively healthy human being.  I'd spent 40 years abusing my body, and my goal was to get everything checked out. Heart, lung, liver...  All the things you can ruin by being a stupid person who doesn't pay attention to what she eats or drinks.  I was a big girl, so I needed to figure that out as well.  This is the story of what happened after my first "get healthy" appointment with a dermatologist.  

I was diagnosed with Nodular Malignant Melanoma in August 2014.  It was one of those squishy feeling diagnosis stories you always want to hear about.  I got a call from my dermatologist's office, and I knew it couldn't be good news.  They wanted me to come in right away and to bring my mom with me.  Considering the biopsy came back in half the time it should have, and that they wanted my mom to meet me at the office was a dead give away that not all was well with the results. 

I didn't call my mom, I drove over talking to my BFF, who kept me as far from the ledge as possible.  I walk in, and in a way only a big girl who refuses to believe the worst is going to happen, I smiled at the derm assistant and said "So this is where you tell me everything is going to be okay and  give me a cupcake for being so healthy right?"  At least we started things off with a smile.  There was no cupcake though, which was sad.  I could have used one at that point.

I probably picked up half of what the dermatologist was telling me.  You tend to hear Cancer and tune out.  My doc was very upbeat and positive about everything.  She had removed all of the cancer based on the biopsy. Nothing had traveled past her removal zone, but it was serious enough that this wasn't something that could be treated by just your average doctor. But she also went into all the great progress that has been made in melanoma treatment, which was nice to hear.  She wanted me to go to the large university cancer center in my area, and had already talked to the melanoma center there and they were expecting my call.  I agreed, more because I was shocked then anything.  This was a happy thing for her since she said if I hadn't of said yes, I'd go there, she was going to put me in her car and drive me up there.  Which seriously, is sweet of a woman that I'd only met twice before that day.  When I left the office, I promised that I would call her with any problems and keep in touch with what I found out from the doctors I talked to moving forward.  And that once things were in place, I'd come back for additional scans, which would become part of my "New Normal" (trademark pending). 

It was on the drive back to my office where all of my stuff was that I had a bit of a melt down.  I was a 40 year old, out of shape female who did not have health insurance.  Oh, I may have forgotten to mention that.  The initial melanoma spot was diagnosed at a free skin cancer screening, that I went to because of another spot I had that was bleeding.  That, was nothing.   But my doctor found another spot.   So now here I am, no insurance, no idea how to tell my mom what was going on and unsure of what would happen in the near future, let alone what was going to happen next.  I quick stop at the office where I took the rest of the day off, I made my way home and decided on the way that lunch was the best way to handle my mom.  Our family does food in times of stress.  This wouldn't be so bad. 

This is where the squishy ends, and what could only be called the Twilight Zone starts.  I call up my mom, and she's on her way to pick a friend up from the airport.  Then she realizes that it's 11 in the morning and her workaholic daughter isn't at the office.  So, my poor mother gets this crazy word vomit of "I have cancer, I need to call (Insert local university cancer center here) because my doctor feels it's serious enough to warrant that.  Maybe we could have dinner and drinks tonight.  That sounds like a good idea."  Yes, I told my mom I had cancer while she was in the car driving to pick up a friend, sue me.  It was a little stressed! 

And that is how my first diagnosis continued.  Local university cancer center wouldn't talk to me, because I didn't have insurance.  Even though my dermatologist explained that to them ahead of time.  So I had the option of 2 other cancer centers in the area, and talked to both.  My cousin, who is a oncologist nurse at one of those centers made me promise that I'd take the first appointment I was offered, even if it wasn't at her center.  I was diagnosed on a Tuesday, and spoke to both of the other cancer centers on Wednesday.  I was able to get into Karmanos the following Monday.  They didn't care that I did not currently have insurance, just that they saw the pathology report and that they would fit me into their schedule.  There was a nominal fee, but thankfully I was able to borrow the money to cover it and my journey as a cancer patient began.

I did the surgery to have any possible cancer removed from the area (October 2014).  I also had lymph nodes removed at this time and after biopsy, I was staged as a stage II C - meaning that it was deep, it was wide but it didn't travel to the lymph nodes (as defined by me) I did 3 weeks of daily Interferon before ending up in the hospital (January 2015).  Once I was out of the hospital, I did an additional 7 months of Interferon 3 times a week doing the shots at home (February to August 2015).  Monthly meet ups with my oncologist, lots of blood work... I did it all.  When the doctors or nurses said jump, I asked how high.  I was going to make sure that this was a one time deal and that was that.  Sure the odds were against me, but I've never been a person to let odds define me. 

In September 2015, I had a CT Scan and it came back clear.  That was when it was decided that since I was off of the Interferon (It messed with my liver and blew out my thyroid) and the scan came back clean, we could move to appointments every 3 months.  There was a party to be had that day!  I was clear, what they considered cancer free and had my first clean CT scan.  Life was good.  My next appointment was much the same.  No outward evidence of a recurrence, and I was set up for my next CT scan that would be in March.  Blood work and doctor appointment also set up at the same time. 

Life had finally settled back to normal for me.  I wasn't looking over my shoulder all the time, waiting for the other shoe to drop.  When people would ask how I was doing, I'd say I was 98% healthy.  Until I could stop taking the occasional nap during the day, I wasn't going to say I was 100%.  I was working part time for the first time in a year and seriously, it felt good to be back.  Not my dream job but it was bringing in some money and that was all I could ask.

The closer I got to my March CT scan though, the more squirrelly I got.  I had been feeling a little rougher around the edges.  My energy levels dropped and I was napping more then I had in months. I was having some phantom pains under my armpit, and one night I swore I felt a lump there that shouldn't have been there.  But I chalked that up to being stressed about my upcoming test.  I told a couple people that.  Went down to Karmanos, did my bloodwork, did the CT scan and headed home.  All was good, I settled down some and tried to get into the rhythm of life again. 

This is where the not so squishy diagnosis begins.  And it's partially my own fault.  I was starting to interview during this time.  My job was great, but I was ready to start looking for something to build a career off of.  I had an interview the afternoon after my CT scan.  It was a great opportunity, so of course I was going to go.  I kind of lied to get out of work though.  Said I had something that I needed to take care of for my mom.  The day after that, I received a call from another company who was interested in interviewing me, and I hopped up from my desk and moved out of the work area to take the call.  When I came back, my manager says to me "Is everything fine at the hospital?"  She had just assumed that it was medical related.  So I went with it.  Not wanting to explain I was interviewing.  I said it was, and that they had just called to let me know that my CT scan had made it to the cancer clinic and I didn't need any additional scans.  Just a little white like right?  Well, that night, I get a call from Karmanos telling me that my doctor wanted additional bloodwork, and the scheduled it for the morning of my next appointment.  Ok, no stress there.  I've had both liver and thyroid issues since my diagnosis, and the thyroid would explain why my energy levels were down. 

Fast forward to the weekend, and I get a letter from Karmanos saying that they had scheduled my next CT Scan, doctors appointment and blood work for June.  This was a little freaky, because I always schedule things like that after my appointment with my oncologist, and I'm only supposed to have CT scans every 6 months.  But I could chalk that up to a computer/clerical error.  I'd take the letters in and show them to my doctor and we would have a good laugh about it and appointments would be deleted from my schedule.  This was 3 days before my appointment.

On Monday I received my normal auto call from the hospital to remind me of what time I was supposed to check into the lab for blood work on Wednesday.  On Tuesday I received another phone call from the hospital, this time with a live person from scheduling on the phone.  He told me my doctor wanted to schedule another appointment while I was on campus.  Okay, now I'm on high alert.  This isn't normal.  I asked if this was for the blood work I had already scheduled or if there was another appointment on top of that.  I may have had a freak out on the very nice guy who was on the phone.  It ended up being for the blood work, but that I had now received 2 human calls, a robo call and a strange set of letters in the mail for appointments that were set for me, was enough to have me completely on edge for my appointment the next day.

I got through blood work and what I call the triage portion of my day just fine.  We got our room and I was having a really rough time keeping things together.  I didn't know what was wrong, just that something was.  My oncologist, who is amazing, came in and asked how we (my mom and I) were, and I kind of blew up. My response "We're both fine, what's wrong."  Yeah, I'm not one for small talk at times.   The look on her face which wasn't a happy smile, pretty much sealed it for me that things were not all good in my little world.  She did ask for clarification, and I explained about all the crazy calls setting up the same appointment and the letters I'd received.  I also mentioned I thought it might be my thyroid, but if it was, it was kind of overkill. 

That was the opening she needed I guess.  She told me that my CT scan came back with something on it, but that she never would have wanted me stressed out like I appeared to be over it before my appointment.  Turns out, there were 3 nodes on my lungs, which may or may not be safe to biopsy.  If they could not perform a safe biopsy, then we need to move forward assuming that it is the melanoma that has spread, and treat it as such.  Oh, and by the way, my thyroid is working just fine.  Right in the level it needs to be.  That was an add on later in the appointment, but still nice to know.

So I had gone from a stage IIC patient to a stage IV patient in basically a 6 month period of time.  My nodes, they are small.  All of my options were presented to me, and I am going with my doctors suggestion right now.  I put my life in her hands 18 months ago, and I'm not changing my mind now.  My initial biopsy is now being analyzed to see if it is one of the mutations that they currently have a clinical trial for.  If that comes back positive, she believes I'm a strong candidate for a trail, which would be her ultimate choice for my treatment, because I would be receiving the newest treatments as they come out.  Those results will be back soon, and I'll have a better grasp on just what my immediate future will look like. 

Stage IV is not at this point curable.  But it is treatable.  My theory is that if former President Jimmy Carter can withstand Melanoma treatments at 93 and currently be at a No Evidence of Disease (NED) status, then I sure as hell can manage it at almost 42.  In the beginning of all of this, way back in August of 2014, I told everyone when I was diagnosed that Cancer was not my end game.  That I had a lot of life to live.  Now, I'm amending that.  Cancer very well be my end game someday far away.  But just because it might be my end game doesn't mean that it's going to be anytime soon.  I also said way back when that I was not going to be Cancer's victim, that I was going to be my own hero and that I would get through this with grace and humor.  Hence the Fat Cancer name.  When they told me places that the Cancer could spread, I jokingly said as long as it's not to the fat, I'm probably ok.  If it goes into the fat, I'm a dead girl. 

I have a ton of bad cancer jokes.  Some worse then others.  I am irreverent and usually not medically sound.  This is not going to be a place people can come and find out about my treatment or things I'm doing on top of my treatment.  You can get that in any google search all of that.  I have, it's out there.  This is about my crazy journey, my crazy but amazing family and friends and something to have as a reminder of where I've been and where I'm going and how I'm going to kick Stage IV Melanoma's ass in every way I can. 

So today, in March 2016, I am an almost 42 year old cancer patient.  I got my "Chemo" (Easier then saying immunology) port yesterday morning.  That's a story in it's own right.  While I was having my work done, my mom met with the social workers to try and figure out the best way to keep up at least my status quo.  I'm in the process of moving (another story for another blog) in with a friend temporarily until I can get a little stability in my life.  I'm typing this up before I go for an MRI to see if the Melanoma spread to my brain.  I actually need to leave in the next few moments for that.  I'm no further ahead in my career then I was in 2014.  In fact, the workaholic has had to take a step back and start putting herself and her health ahead of working as many hours as she can.  But I'm a better person for the past year.  I've learned to laugh again, something that had slowly gone away over the years.  I've found a tribe that love and supports me.  I'm closer to my mom and sisters then I think I ever have been.  So for all Cancer could take away, it really gives you a lot if you open your arms and let it in.  This isn't how I'd want all of this to have happened.  But it is what it is.  And I just have to continue to embrace my crazy journey.