Accepting Dysfunction

You will find that wifey posts take on a therapisty-kind of talk. It is because metaphors and analogies ease anxiety. Often during these times where I wonder if I’m handling things the way someone should and balance it out to being 32. Honestly, no. Three weeks ago, I was trying to get into prenatal yoga classes and taking a quilting class. I was getting all my CEU's updated so we could go to Puerto Rico after bambino #2 was born. I was enjoying being a part-time worker and full-time mom and wife in an amazing family and enjoying taking the time to look at recipes and even go out to the zoo when it was not freezing. 

I am a medical social worker, and this sucks (apologies for my diction to my nephew if you are reading this). My world was helping people keep insurance, providing education, enhancing coping, finding lodging when working in oncology. By the time most families got to me, many life needs stabilized, but the young ones were the toughest – society did not have a response. If you had cancer with a family at a young age, it was tragic. As your age increased, the responsibilities of being a parent and ability to focus on the spouse shifted. The financial burdens were large, and the resources small for families with young children. The young adults with family always intimidated me, and now that we’re on this side of the aisle, it is all so easy to grasp how something like this changes your life especially if you don’t rebuild it, taking what you can to appreciate, and having courage despite the challenges. We’re not going to win every battle – even just in scheduling an appointment. How can I help?

In the jail system, it was helping with adjustment. Are we adjusting? Not so sure it’s in the cards for the short-term. I often would use the metaphor that an early jail sentence was feeling like you were staring across the Grand Canyon. Seeming so vast and rugged, it seemed impossible to cross. Having seen jail sentencing (from afar), I would explain that it was more like being at the base of the Mississippi River. More than a mile wide, the currents were incredibly strong. You have to build boats, find bridges, and learn to navigate the waters lest you allow your own emotions sweep you away.

There is only so much in the day that we can talk about a brain tumor and the impact on life. Some days we are learning how to go forward and others what spins the boat around. To be able to keep our boat from sinking has only been because of the support of family and friends, prayers, non-casserole dishes, and hope. At first, Ben and I talked about the analogy of pulling off a band-aid… it’s more like pulling off a cast and, honestly, what saves you are your family and friends while you gather the pieces, find your footing, and begin take one step at a time. (I’m still trying to tone it down from 3 or 4.)

It was fare easier to be a companion to my husband when I was there 36 hours straight, in the ICU vying between supporting him and finding new ways to cope with the anxieties of what a diagnosis like this could mean. In the beginning, the possibilities seemed endless, and much like his second surgery, the options for his treatment are being reducted. Between those two points, the waiting came. The internet research they warn you not to do (research is one of my ways to cope with understanding). Thinking ahead seemed insurmountable past this one little grape-sized lump that we didn't know and still don’t understand. I am learning way more about the brain than I ever genuinely wanted to know from this perspective. It is hard to not go between craving the blissful life we had unaware of this condition… the life before… and the utter thankfulness for having been given options.

What we do know is surgery likely won’t be his only treatment option. They were able to remove most of this stupid (medicine calls it indolent) tumor.  That’s the first step. Our next consults will involve speaking with a few different oncology services. We will need to learn about if the tumor has calcified, differentiated, how much interfaced with the thalamus, and what treatment to that area entails. None of these appointments fit in a particular order. This preference for order does make me feel like a Vulcan. The system's not logical, but (thank god, I’m human) there is some kind of system there, medicine is there, providers are there. Thank you for the surgeons and clinicians, nurses, and support team. 

For as much challenge as it was to see patient cases as a social worker, it has given some unique tools in these situations. One, fly off the handle and use the pregnant hormonal card as much as they allow you. Just kidding. One, know that not all computer systems and scheduling systems align. Two, know that discharge plans can get printed at different times. Three, know that if you have a typed one, the extensions of the numbers on the list might be right but those early numbers are wrong (because most folks in the hospital only type the last five digits). Four, seek helpful people. After a series of frustrations (between where my husband was ready to redo his own IV line and listen to a severely depressed charge nurse/all others were amazing/ tell him the line was still useful to confusion in the discharge planning process like getting called for appointments before either of us even received news of the MRI), I sought the patient care advocate to just try to bridge the gap (because my experience had been that little birds in the ear prevent further error). Just touch base with the team. Instead, I found the honus getting put back on my husband the patient, who I wasn't sure was having short-term memory issues due to brain surgery/anesthesia/all of the above, or myself when I started hearing their assessment of truth in the situation about what they knew not what I knew. Whether you need it or not, forgive them, forgive yourself, and take a new step. You can only fight so many battles. Don't fight the side that is on your side (didn't Rome learn this time and time again).

Accept dysfunction happens. It’s not going to happen where we expect it. I didn't expect it in the patient advocacy office. I didn't expect it with a charge nurse, but providers can have rough lives too. But, know that you might find the solution in another rare or unexpected location (like the MRI tech who fixed his line).  I am also learning more about the pros and cons of the military treatment at Walter Reed – with more lax discharge times also comes less compressed treatment planning even though the medical providers exercise the effort pull plans together. We are probably not the first to experience these challenges, but maybe that's where we will eventually be able to help others. Also accept that asking questions and adjusting to the system is a part of the process. I cannot attack the system that treats my husband, like when getting blown off by someone saying they’ll pass along the request and does not. I can only seek what works and be as prepared as possible.

There are many larger questions with which we are grappling. My mother, father-in-law, and husband would all tell you I worry far too much. Do you remember the famous line by Steve Martin in Father of the Bride with crazy lessening with each generation? I come from a line of worriers. It comes in handy to handle crisis, but it can be a pita (sorry again to my nephew) at times. With the first phase (if you will) of his treatment, we were and remain thankful for all the blessings we have been afforded in life and the sweetness of the day, being parents, adult children, able to do any task. As we approach this second phase of treatment, it seems like we’re given more time to spin our wheels and really have to focus on what we simply want out of the day and what we need to get done.

We’ll get there. We’ll refind steering the keel to direct the haul. We’ll refind the strength of the sails and master the new winds. We’ll manage our short-comings, often because of the love and support of family and friends. We have a great team. This is our first storm. We at least know how not to get smacked a second time by the boom.

Thirty years ago (1982), they identified this storm (central neurocytoma) as different as others (tumor types). Twenty years ago, the international community adopted it into international recognition and were still researching how to improve radiation treatment. I will never again idly wish that we were ten years older into our careers or fortune, when it has been the careers of researchers that will hopefully  have the treatment needed to heal my husband.

I may not have all the answers at 32. My husband may not at 35, but hopefully, we will be able to come out of this better and stronger. In the long game, we are most definitely adjusting. It's the short-game that seems to be the most intimidating. That is my faith. Courage every morning. Love and humor every day. Hope every night. This is where I am suppose to be.