It's complicated.

I started writing a post about how I had a very important week at work and I'd been quite busy with work for the last 2 weeks. I was going to then talk about how I spent 45 of the most satisfying minutes on Pinterest this morning after nearly 2 weeks away.

But then I realized that no one would understand anything I'm talking about since half of my family still thinks I work for the American Cancer Society. That is partially my fault... I never make any attempts to explain my work situation because really, it's quite complicated.

That ends today! (this is your cue to stop reading if you don't care about my job... it's a pretty long story)

Let's start at the beginning, shall we? Once upon a time, I worked for the American Cancer Society in the Government Relations & Advocacy (GRA) Department. We advocated for things like better insurance coverage, more funding for screening programs, higher tobacco taxes and smoking cessation programs for people on medicaid. We also advocated for funding for the CT Cancer Partnership. I didn't really understand what the Partnership was, all I knew was that Lucinda ran the show and she sat near us in the office. Occasionally, she would get ice cream with us when we had our GRA department "meetings".

Once, she even asked my opinion about the cover of the 2009 - 2013 Cancer Plan. (It's worth noting the foreshadowing here... the one I picked was the one she went with).

Not long after that, Lucinda got laid off because the Partnership ran out of funding. This happens a lot in organizations that are grant funded. Especially those organizations like the Partnership that have no tax status, so they rely on other organizations to get grants on their behalf. Don't worry, I'll get back to this.

Anyway, after she got laid off, I did too, about 3 months later. ACS was eliminating 2 of the 3 positions in the GRA department. So on August 21, 2009 I went home to my student loans, car payment, new doggie and tears about the injustice of the world. I spent nearly an entire month just hanging with my puppies (after the layoff, we decided to get another while I was home).

Come late September I applied for a lot of jobs, most of which I thought I was probably over-qualified for... but this was really just when things started to get really bad, so there were literally thousands of applicants for single jobs. I couldn't be too picky.

Occasionally I would talk to my old boss and see how things were going back at ACS with all of the layoffs that had taken place on that horrid Thursday. Morale was low, pay-cuts had made their way into a new lifestyle that also included fundraising in every department and numerous furlough days. Honestly, when that news came out, I was almost glad that I got laid off. I had no interest in fundraising... or pay-cuts. My pay-cut was being put on unemployment... the only difference between me and my old colleagues was that I had every day off.

It was in late October that I was starting to get really bored of staying at home, and tragedy had recently struck when our first puppy, Mr. Echo, died at 4 months old of pneumonia. I felt like the most unlucky person alive... I had been laid off, our puppy died and jobs just didn't exist. One day, I got a call from my old boss who mentioned that there might be a temporary job for me at the CT Cancer Partnership with Lucinda. I would be doing the same work I was doing before, but only 3 days a week. Funding for the position was temporary, but it did look like it could turn into a longer thing as there was some funding caught up in the bowels of state government.

I knew about the funding, it was a $3.4 million settlement that the state made with a drug company. I also knew that per state law, any money the state received by settling a case with a drug company was specifically slated to fund comprehensive cancer control. The announcement of that funding was made before I even got laid off. But things were looking bad for the state, fiscally speaking, and that money had been "frozen".

But, I was really hoping to do something different, something more important, and obviously, I wanted to make more money. It was a risk: do I take this job as a temporary thing for me to do and lose my unemployment? Will I get it back when this job ends? How much will I get at that point, a percentage of my original pay at ACS, or a percentage of this new, part-time job at the Partnership? I was pretty convinced that it would be a mistake to take this job. But I also figured that when the funding ran out (which it inevitably would) I would look better as a candidate than someone who hadn't worked in months, or event years, so when Lucinda called me, I said I would come in.

It was November 5, 2009 when I walked into the new ACS Office (during my layoff they had moved to a new office in Rocky Hill from their beautiful, yet smaller space in Meriden). I sat down with Lucinda (who had been on layoff since June) and listened to her describe the Partnership, the Cancer Plan (that I helped picked the cover for) and the structure. She described the things I would be doing and the potential for more funding. I asked her about hours, specific tasks and longevity.

On November 6th, I showed up for my first day. It was one of a handful of times that I ever worked a Friday with the Partnership. A week later, I handed her my resume, suggesting, "you might want to have this... you know, since you hired me and all."

She gave me a copy of the Cancer Plan and suggested I read it as my first task. From that first day in November through March 15, 2010, I worked 3 days a week cleaning up the website, scheduling committee meetings, and working on my first Annual Meeting, which was hosted a mere 3 weeks after I started.

The Annual Meeting is the one time a year that most of the active members get together to learn about initiatives in cancer control across the continuum of care (which, if you didn't know, starts at Prevention, and Early Detection and goes through Treatment, Survivorship to Palliative and Hospice care). Its run just like a regular conference with a keynote speaker and a general theme that continues in the breakout sessions. There are poster presentations and a chance for networking at lunch. There is also a business meeting during lunch when members vote on any changes to the by-laws and select new Board members.

It was the first time I met any of the people who I would be working with in the future, and it was an interesting experience. I immediately liked Linda Mowad, who was the vice-chair of the Board. She made a special request for some chocolate, and as a girl ready to perform, I found some! Later in the day I met Elaine O'Keefe, who terrified me by complaining about the breakout session we proposed she and her co-chair Pat lead. Literally, I was frightened.

By March 15th however, I had learned that everyone, including Elaine, was really quite nice and very patient with me as I learned the ropes. I would consider those first few months my orientation into the Partnership. I learned everything I needed to know to be an effective Project Coordinator, and suddenly, the Plan made sense. Lucinda and I were making progress together, fixing everything that had fractured since her layoff. Without staff, the Partnership had really deteriorated.

And then we received word that our anticipated $3.4 million (which had been unfrozen) still had not been through the proper channels for approval to spend. "so, you're going to want to leave today... we don't have any money left to pay you... you might want to do that right now."

So for the second time in 6 months, we were forced to pack up shop and hang out at home. This time was a bit different though... we both knew that the $3.4 million would come eventually because we had already submitted a formal plan on how to spend it, and the plan had been approved by the Department of Public Health (DPH). We still needed approval from the Office of Policy and Management, and then the contract had to be "executed". In the bureaucratic state government, this process could take up to 6 months... or, it could be done in as little as 2 months.

At that point, I pretty much just enjoyed my time off. The weather was getting nice, we had brought home a second puppy to keep Aero company, and I knew that eventually I would have a job again. By mid-May Lucinda and I received word that we could start back up whenever we wanted... but she was spending time with her grandson, and I was in love with my long days off, so we opted to wait until June 1st to start back up... and not without certain conditions. I received a nice pay bump as well as a fairly flexible schedule (Fridays off).

June 1st rolled around and it was time to pick up the pieces yet again, and try to get over all of the hiccups that had occurred during our time away. But this time, I knew exactly what I was doing.

In 2005, the Centers for Disease Control and Prevention (CDC) decided to put out funding for every state that developed a cancer control coalition. The coalition would consist of everyone in the state who had their hands in some type of cancer care, and it was tasked with analyzing the burden of cancer in each state. After realizing the problems, the coalition then had to write a Plan to declare what they planned to do to solve these issues. For example, one thing CT stumbled upon was the fact that cancer survivors were unaware of all of the resources and programs available to them. So in the first plan (2005 - 2008) the #1 objective for the survivorship section was "to increase the proportion of cancer survivors and cancer care providers who access and utilize survivor support services." In 2007 when the Partnership had received funding from the state, they funded a program that did a needs assessment defining a starting point, and then developed a listing of all of the survivor services across the state. The list of services was made available to practitioners and was temporarily posted on the Partnership's website.

See how that works then? The Partnership finds a problem, identifies the strategy to solve it, and then gives money to an organization to try and solve the problem.

In CT, our "coalition" is the Partnership. Our Partnership is made up on oncologists, nurses, social workers, radiologists, public health directors, members of the state Department of Public Health, American Cancer Society staff (along with other non-profit groups) as well as educators, and sometimes students. Each state is structured somewhat differently, but in CT, the Partnership is an entity with no tax or financial status. Technically speaking, we don't really exist. We are funded 100% by grants given to us from our DPH, or the federal government. However, because we are not a 501(c)(3) (which is a non-profit organization) we cannot apply for grants.

So you see how we tend to run out of funding? We do not control our own destiny.

So why not become a 501(c)(3)? Well, for one thing we would have to compete with our members for funding. For another, then we would have to fund raise... yuck. In some states, the coalition is simply the Cancer Control unit at the DPH. And in other states, the coalition started and then just ran out of funding and never came back. It is unfortunate that the CDC gave states money to start up these programs, and then turned their backs and pretended as if they didn't exist. The CDC still funds Comp. Cancer, but they give the money to the DPH, and it is up to the DPH to decide how much (if any) they give to the coalition. Our DPH has given us a small amount of funding for the past 2 years. Sometimes they just give it over, other times, they give us a grant for a specific purpose, like my patient navigation conference.

But if we can't accept money, who do they give it to?

The American Cancer Society is our fiduciary agent, and they accept and expend funds on our behalf. So, even though I work for the CT Cancer Partnership, my checks are cut from the American Cancer Society, and I work in the ACS office, and I have a cancer.org e-mail address. Why would the ACS do this? Well, in short, they get 18% of our contract to do it. So if our contract is $500,000, the ACS gets $90,000 as a "thank you". This 18% is separate from the money it costs to pay for us to be on staff (including things like benefits and other administrative costs such as computer software and a desk to sit at). So trust me when I say that the ACS benefits from us being there.

Then again, most fiduciary agents charge more like 40 or even 50%, so the 18% that ACS collects is actually a very small fee.

We run into three very specific problems by letting the ACS be our fiduciary: #1, people think we work for ACS. It doesn't sound like such a big problem, but in the cancer community it is important that we represent all of our member organizations, not just one. Often, this confusion does lead to some tension or misunderstandings, so we try our best to distinguish the difference. #2, we are subject to the American Cancer Society rules, programs and it's own bureaucratic methods. For example we are a "grant" project so even though we have a huge amount of funding that we expend, we can't get a company credit card. We also have to use lotus notes e-mail program, which limits our mailbox size to less than a gig, and automatically appends an ACS logo and contact information to every single e-mail we send (which adds to problem #1). #3, ACS tells us whether or not we can accept money that the DPH wants to give us. Sometimes this is a big problem because we might one day face running out of funding, and the ACS can say, "oh well, we're done." Or for example, the state wants to funnel us some money that comes to them through the federal government, and ACS says "no, we wont accept any more federal funding because we don't want to exceed our A133 audit amount." Every non-profit is subject to an A133 audit by the IRS if they accept an excess of $500,000 in federal funding during the course of one fiscal year. These audits can cost up to $20,000 to hire an accountant to prepare for.

But we started on June 1, 2010 with an end-date of September 30, 2014.

When we started back, the first thing we did was prepare to expend the $3.4 million. So using the 2009 - 2013 Cancer Plan, we identified strategies to eliminate problems caused by cancer in the state. Then, we announced our project ideas and waiting for the RFPs to roll in. RFP is Request for Proposal, this is what the state calls it's contracting process. By June 1, 2011 we had rolled out 16 projects (as of June 1, 2012 the total will be 19) that are currently working to solve problems in cancer control across the state. Some of these projects are very simple, and some are exceedingly complex, requiring me to review the proposal before committee meetings so I can remember how to describe it.

It's been nearly 2 years since Lucinda and I have been working continuously on projects and oversight, but we still occasionally run into problems caused by the initial layoffs. Overall, we do our best to move forward as one of the very few coalitions that is in the process of analyzing the second plan and getting ready to publish the third plan.

I know that this has been a very long post and I haven't gotten into my day-to-day, but I hope that it is a good jumping off point for all of you out there who I have never really explained my job to. Yeah, it's complicated and confusing, but it is also very satisfying. This original intention for this post was to talk about pinterest and how my past two weeks have found me tangled up in work at all hours of the day. But somehow I got on this soliloquy about my job and the Partnership only to conclude to you that those past two weeks have been demanding but rewarding. I was handed a project to host a conference on Patient Navigation (another story for another day) about a year ago when I had no clue what it really was. Earlier this week I had national experts in the field commending me for an excellent conference that was packed with substantial information about this burgeoning field. National... experts... commending me!

I'm really glad I got laid off when I did. I'm glad that I went against my own thoughts about this job way back in 2009. Sometimes, your brain just has no clue what is best for you, and the universe solves your problems on its own.