For me, one of the most frustrating experiences of this journey has been the financial aspect of the healthcare world. I probably should begin by mentioning that I have a scarcity mindset when it comes to finances. My dad was a pastor. My mom did not work. 6 of us living in a suburb of Chicago on a meager pastor salary. We did not have fancy cars. We did not go on vacations. We rarely went out to eat. We did not have cool clothes or name brand anything. Nor was I taught many details of the financial world other than 80/10/10. Use 80% of your paycheck for bills, 10% is to tithe and 10% is for savings. The salary at my full-time job as an English teacher in 2007 was just over $33k. I chose to step away from teaching in 2014 because two kids in daycare would drain almost my entire teacher salary. Since then, I have pieced together jobs on the regular: Starbucks, CrossFit coach, nannying, house cleaning, substitute teaching, Instructional assistant at my kids elementary school, and a few other things. You get the drift. I figured something out and got to work. 

During the first few weeks of diagnosis, nothing is clear and I was crying my brains out. I was diagnosed on a Monday. On Tuesday, we met with my oncologist. On Wednesday, we met with my surgeon. Of the same week. This is prior to having a confirmed diagnosis via tissue sample. That’s an impressively fast turn around. Normally we are used to waiting weeks to see our doctors. Nope. Cancer is like a Disney fast pass to doctors. I will give credit where credit is due. But then you wait agonizing weeks for an official diagnosis with stage and type. During this waiting period, I chose to pursue a holistic approach, as many following this blog know. Using radiation and chemotherapy but adding nutrition as medicine, looking up alternative healing methods such as hyperbaric oxygen treatment, infrared and sauna treatments, various vitamins to help combat symptoms. And what I didn’t know then was how expensive this whole journey was going to be. But what do you say when you get this kind of news? Nope, I’m going to wait and see how things get paid for first? I need to check my portfolio? No! You go headfirst into doing what you believe to be the best chance at survival. Literally. Survival of life. That’s a different kind of survival. Not survive a stressful week. Or survive a work presentation. Or survive a teen’s attitude for the day. This is your life. Breathing in air to your lungs on a cool morning. Watching your child graduate 8th grade. Tearing up at your kiddos 2nd grade Spring Sing program (yep, that was me whipping away a tear). This kind of survival is different. There is no planning for years to come. It is immediate. So financially up first, oral chemotherapy. The oral chemotherapy drugs that I took during radiation are $1,200 and that, my friends, is WITH insurance and is a 30 day supply. Thankfully, I applied and received a grant to help with this cost. But seriously, $1,200?! Then, we applied for financial aid through our hospital. Three months of work stubs for both Chris and myself. A run-down of our expenses. Previous year tax returns. Any investments. And our blood type. All was submitted. Just kidding on the blood, but close. We were denied. Twice. There is no sliding scale of help as I was told in my remissions meeting which is why we re-applied. While we qualify for a family of 5 making under $100k, our savings had too much. For clarification, by too much, our savings had over $40k. Here I was, thinking I was being fiscally responsible in having an emergency fund if Chris ever lost his job. Which side note, he did. In 2017. When we were a family of 5. We did not have an emergency fund. We pulled money out of various investments to avoid devolving more into debt. Was that a good choice? Probably not but hindsight is 20/20. In 2017, were Chris and I being good stewards of our finances? I’ll be honest, not really. Now, we have gotten ourselves out of our debt and finally on the “right” path financially. Then cancer. In other words, I can go bankrupt spending money on treatments because I have more than the threshold as liquid assets. It does not matter we are saving for a future house. What do I mean by assistance? Of helping meet my individual out-of-pocket which is around $8,600. That does not take into consideration my lost wages because I resigned from one part-time job and reduced my hours in my other part-time job while going through treatment. It does not consider the lack of stamina I will have to be cook, cleaner and organizer of activities. Nor does this financial assistance translate to my holistic approach: keto diet, monitoring of diet, buying organic meats, fruits and vegetables (which I still do) or covering any extra treatments like hyperbaric oxygen and various vitamins. (Infrared and sauna have been generously provided. Let me know if you need a small business to support!). All that to say, my first year of cancer treatments cost more than $20k. And let me pause to acknowledge those friends and families who have financially contributed whether through monetary donations, meals, gift cards or all the above. Thank you for bolstering me and my family. We literally could not have done this journey without you. These wonderful donations also allowed my family to travel and get away together. To have some sort of fun experience during this year was priceless. As a mom, it was everything to me. 

But $20k in one year? Now we are on to another year. Another deductible. But we will be adding therapies for the children. Can I go through insurance? Of course I will do my best. But if we find someone who helps my kid who is out of network, are we going to say no? After this kind of year? Jury is out on more hyperbaric treatments for me as each session is several hundreds of dollars. And I will have physical therapy for my vaginal stenosis and fecal incontinence (try not to be jealous). How long will that take? I’m not sure. What happens if I go over my limit that insurance provides? Or what about the hormones I will be taking regularly for the rest of my life. Is that budgeted in to this as well? The extra vitamins I choose to take because I am continuing to try to figure out my neuropathy and inflammation from chemotherapy? I feel there are more questions than answers and my head is spinning. 

Here’s the skinny. I know my life is worth this. And I’m alive, thankfully. But as a mom, to know my family has sacrificed and been put on the back-burner is hard to navigate and even harder to admit that reality. I have been the focus. I have been the concern and the worry. It is a position I would never have considered being in before cancer. It’s not what (most) moms do. I’m glad it was me in the family to get cancer. I would not wish this experience on anyone. Not even the rep cheaters in the gym. Nevertheless, how do I reconcile the baseline of the next four years of $8,600 each year on my continued treatment and not feel guilty this money is not being spent on a family vacation? Or just not worrying so much about finances in general? The rub, or discomfort, for me is feeling I am not able to provide experiences for my kids. I can acknowledge much of this stems from my own bruised childhood. I know we do the best we can and I can only control what I can control. And, I’m alive. But I was not thinking of the long-term financial cost of cancer. But here we are. So what is the answer? The hustle up and heal concept so I can get back to more permanent work? Definitely the option but hard to tell my numb feet to heal faster. Honestly, I am not sure what the answer is. And it’s frustrating. I was not anticipating the side effects to be so brutal. Long-lasting. Long-term effecting. So I am going back to my safety net. Even in my anger and frustration and cussing, I cling to my faith that the Lord will provide. And by cling, I’m talking one-fingernail-kind-of-grip-to-the-top-of-a-mountain-type hope. I have zero answers for how some aspects will come together but I keep praying for opportunities so that they can come together.

I have debated sharing the financial aspect of this journey. I have a deep sense of self and worth inextricably tied to our finances (I’m going to pause to go cry now and yes, I’m already in therapy). It’s quite silly but it has been a heavy yoke for me. But through this journey, we have been so blessed by people’s generosity. Nor is this blog a cry for more help but rather just a peek behind the curtain because I had no clue of the expenses for cancer. Most think you just pay your deductible and go on and you are all better as soon as your treatments end. But then your kid (or kids) needs more support than you know to give. And the lingering effects of treatment may be best addressed by adding this vitamin or that treatment. It snowballs. And in the beginning, I was just naive. So thank you all. Sometimes it is hard to get out of my own guilt to realize the good things that have been given and provided to me and my family.