Staying Alive is Expensive

Dear Readers,

Thank you, in advance, for reading. I realize that everyone comes here for a different reason - some may come for a general update on my health or mindset, some to add to their own gratitude that they are not going through a cancer or brain tumor journey (which is perfectly ok - I may do the same if our roles were reversed). All in all, I am humbled that you are taking 5 mins out of your day to share with me. I do find it cathartic to share in this way, and this will be a good reminder later to what the journey was really like (memory issues - and those were pre-tumor!).

I had a great session with my therapist yesterday, and I talked with her and later with Brad about my reticence to post sometimes because I feel like we get too much credit for being positive. Brad and I are both naturally positive people but we are also realists. We know that this is a journey. It's not all sunshine and roses, and recognize (as many people feel compelled to tell us), it is okay to have bad days. But, ultimately, most days, we have the choice to focus on the positives rather than the negatives. This is our authentic feeling. But, we do not wish to present a naive or Pollyanna view of our situation.

We hit my out-of-pocket max in 2020 in July after one night in the ICU, so we have only really been paying attention to price breakdowns since everything started over in January.

I also hesitated to post on this, as I feel an extreme level of privilege in this area. I have good health insurance through my employer and Brad and I are diligent to keep a healthy emergency savings, but I'm still floored by the decisions about our health that are decided by private insurance companies, not medical professionals.The following are some of the surprising charges:

- an MRI is billed, to start, at nearly $5,000 and ends up about $500 when we get our final bill - my oral chemo pills are $200 per month - that is our co-pay

We are in March and I'm about $1500 from my out-of-pocket maximum for 2021. I post the following meme to keep the topic light, but am fully aware that we could be in the position of many Americans to need the $1400 for food or housing for their families.

I haven't yet seen a bill for my new Avastin infusions but my oncologist's office wouldn't schedule me until BCBS approved. If you missed my last post (and I understand if you did - this stuff isn't that riveting), the Avastin is a newer treatment is meant to work alongside my oral chemo. The oncology team - here in Charlotte and at Duke feel good about how radiation and chemo have kept my tumor from progressing, but they are concerned about the persisting swelling around the tumor. They plan to do 3 Avastin treatments (3 weeks apart) then do another MRI and reassess treatment.

These are the reasons that your parents or other advisors told you not to let your health insurance coverage gap. Who plans on a brain tumor at 38? But, if I was not covered, how would this journey have gone differently for us? Without good health insurance and emergency savings - many have to rob from their future selves via retirement savings - which is like taking from it 4 or 5 times due to the power of compound interest.

That said, some drug companies do offer low-income assistance programs, but they tend to be per drug. In which case - scared, confused, and sick patients are left to navigate application programs and paperwork while feeling crappy, some without a partner or advocate who can help them to work through the processes.

Another Growth Opportunity

I mentioned in my last post, the fear I have of losing ability to connect with people, as this quality has always been a pride point for me. It did occur to me the other day that maybe this could be an opportunity to learn to be a better listener? I know that one of the short-sided points of "connection" is that it's tempting to connect on commonalities rather than fully listening. I.e. "oh, you are from Ohio too?! What part? I grew up there and went to Ohio Northern!"

Book Recommendation

Speaking of Ohio Northern, one of my DZ sisters recommended this book to me and I'm loving it. It's a very accessible introduction to Buddhism and the concepts of achieving Bodhichitta (a Sanskrit word meaning “the mind of enlightenment” or “the awakening mind”—the mind that wishes to achieve enlightenment in order to lead all other beings into that same state. It is the attitude of the bodhisattva, of the person who makes the compassionate vow to save others from suffering).

Health Update

I start my 4th round of chemo on Monday (through Friday).

Next Avastin treatment is on April 5th.

In other news

Our Golden Girls are consistently producing 3-4 eggs per day between the 5 of them. Pets who feed you are the best!!

Spring has arrived in Charlotte and we are thoroughly enjoying the 60 and 70 degree days which we have been gifted, thus far. We are ordering dirt and plants this week to get our homegrown phytonutrients ready to go!

We are thrilled to be heading back to the Outer Banks in May, after having to skip last year. All of us will be fully vaccinated by then!

Speaking of vaccinations, Mar and Lar are finally going to be able to visit in early April, after not seeing them for over a year. We are all looking forward to spending a weekend together!

*Correction from last post: I mentioned the Letter to your Future Self resource but accidentally provided the wrong web address. The correct link is: https://www.futureme.org

Shift review - As promised, I did receive my shift necklace, and like it but not for the reasons you may think. The actual breathing technique is pretty basic and definitely calms your nervous system, when done as suggested. However, I find the presence and weight of the necklace to be a good reminder to take the time to do it. It is quite sizable - I do not wear it to bed as I do with my other necklaces. I also do not currently have hair that would tangle in a necklace while I sleep. So, I recommend if you have trouble remembering to take time to stop and meditate or mindfully breathe; but if you already do that, I would say, save your money.

My Hair

I'm starting to grow out my shaved head. I have never had short hair before, so this is totally new experience for me. I'm actually looking forward to trying different styles but it's about time for me to go get the help of a stylist. Luckily, we don't leave the house much yet, so I just wear a hat until I have a handle on where my current hair length is styled.

Something to Think About

Either on a Peloton ride or on a recent show, the following question was posed. It made me think of the concept, "if you knew how much time you had left, how would you make the most of it"? I'm not sure it's really possible to maximize one's time in that way - that's a lot of pressure. I think this question serves us a bit better.

What’s a well-lived life?

My current answer would be to stay as present as possible - meaning, not looking backward at past mistakes or, as Brad would say, not stumbling over things you've already passed. Along with that, not projecting too far ahead or stressing about what comes next. I will have to deal with that as it comes. I cannot solve future "what ifs" right now. I do not know what they are yet.