Hello everyone. It has been some time since I last posted. I am currently writing my book on my cancer journey, so I haven't had as much time to blog on my site. I felt compelled to write today, on Easter, because in the wee hours of the morning, things reached critical mass in my home. While everything is fine at this point, it made me want to address something that I think will help others that have a serious medical condition or conditions, not just cancer.
Having a medical condition, especially a complex one, can be severely taxing on immediate family in the household. While yes, primarily it is the individual who is suffering bearing the brunt of a lot, the family advocates for the individual. There is a reason why there are support groups for caregivers. My immediate advocates has always been my husband and sister, who both have taken a lot of time out of their work schedules and personal lives in order to care for me while I was at my worst. My mother-in-law and my biological mother have also taken time/resources/money to help us. Many of you are walking this path with us - in everything you have done in donating, calling, messaging, the whole works, which I am forever grateful. When I felt like my life was not worth living, and honestly felt like giving up on everything, it is my tiny family (not all biological), my friends, and my military family who has rallied around me to push me forward. I want to tell all of you: THANK YOU. You all mean everything to me.
I will use my situation as an example for this post. Many of you already know I suffer from Breast Cancer (triple positive) and non-epileptic seizures/dystonic tremors. My condition with dystonia is EXTREMELY rare. I was recently diagnosed with it through a neurologist, but we have always known how to combat it. One of the symptoms for me for a dystonic attack and/or tremor is my voice box will begin to seize and I also get a form of lock jaw. Eventually, I lose my ability to speak, so my husband has to speak for me. Once a dystonic attack has started, it doesn't stop and has to be treated immediately, or it becomes a lethal situation. When this happens, the person to speak for me is my spouse. If a doctor is a complete asshole, guess who he/she/they scream at? My husband! I have seen this in full action, and felt utterly hopeless in the fact that I can't speak for myself. Being a caregiver isn't easy in that you are dealing with the brunt of what the medial community brings at you. So, what I can say, is make sure you have a group of providers that understand this element and treat BOTH parties with respect. We have had a handful of doctors AND nurses (hate to say that) who have been utterly nasty to my spouse, even though he is doing exactly what he is supposed to be doing - advocating for his spouse, and I do the same for him when he is sick or has surgery.
While not going into too much of the details, things reached critical mass at around 12:00 AM on Easter Morning. I began to seize AGAIN - because two of my triggers for seizures are lack of sleep and extreme anxiety. My condition is not under control yet, so the "big" cancer hospital refuses to take my case, even though we (myself and my spouse) have been working our ASSES off to get things the way the medical establishment wants it. We got the care plan they wanted from my primary care, the diagnosis codes, and ALL MY MEDICAL RECORDS so we can be treated fast and effectively if I have to go to the Emergency Department. It gets old when doctors see that and throw it back in your face. The odd part I will add, is that nurses have told us we are the most prepared and well informed couple to come into the ED. We now exclusively go to Womack ED because they actually called my care team to confirm all the paperwork, whereas Moore Regional ED failed to do that and pretty much told my spouse that we forged the letter from my primary - even though we told them to call her and they will tell them the exact same thing - I have NEVER forged a document (and I can go to JAIL for that).
Anyhow, last night I had to go to the Womack ED because my seizures became out of control at around 3:00 AM, after having seized for about 3 hours. We fought before we went into Womack, and I mean blow out fight in my fragile state. I again, lost my voice, and it was just overall terrible. I realized then that cancer, the seizures, everything had taken a huge toll on my spouse and myself. We had to make changes in order for our marriage to survive this. We could no longer revolve our lives around the medical system, in that it can become extremely stressful. We both needed to do better for ourselves and each other. Our lives for the past year has been nothing but medical visits and dealing with my deterioration.
After everything was all said and done, we both equally came to the realization that in order for us to survive this together, we needed to work on us. We have to take care of us first before anything else. It isn't about the physicians, in case they forgot, it is a service position, but increasingly it became all about them and their fear of losing licenses in NC, not me, not my spouse, not my family, only about them. The treatment protocol works, and for a while it was working really well, until triggers left and right just happened.
We decided that we needed to take care of our individual selves in order to strengthen our relationship. So, I wanted my spouse to hang out with his friends, workout more often as that is an outlet for him, and to spend more time doing things that help him relax. For my part, I plan to get more massages (I haven't had one since my diagnosis), float tanks, facials, and eventually I will workout again. For those wondering, I can't workout until I go at least one month without a seizure - so you can imagine how much that drives me crazy. As a couple, we plan to do a stay-cation (hopefully this week as this is an emergency, but we are waiting for a few medical reimbursements) and just leave our home for a few days to just get away from all this. We both realized that we were giving everyone so much power over our marriage, our emotions, and our sanity - so we plan to release that and come together to fight. We need a reprieve before we head back into that fight.
Anyone going through something similar, my advice to you is that you can't take care of anyone if you don't take care of YOU. Some may find that selfish and say, well I AM THE ONE FIGHTING! But honestly, My spouse and I are BOTH fighting. His feelings and thoughts are just as impacted as my own. Caregivers need the time away from the situation. The person affected needs time away from the caregiver on occasion. It is about maintaining your own mental wellness and balance. Once that is maintained, you are more prepared to deal with whatever comes in your direction.
I'd like to add that another reason why we feel so much stress is that physicians fail to understand sometimes that it actually takes a long time to get in with some of these specialists, and blame us constantly if they believe we are not moving fast enough. We have had to be extremely firm in saying that we have done everything we can physically do short of just walking up in there (the drive is over an hour so that was not an option). First, we scheduled with Duke - only to be booked out by 4 months. They told us we were lucky - usually people wait anywhere from 6-8 months. We then decided to research neurologists that specialize in movement disorders and got a call from Raleigh. We were able to get in within 2 weeks because of a cancellation, so we got extremely lucky. We have the EEG scheduled already, so we are moving rather quickly, but I still find it odd that physicians (medical oncologist specifically) believe that we are sitting on our ass on this. Actually, we busted our asses (including my primary care and the nursing team) to get those appointments. Instead of bashing us, I wish they would say okay instead of this long ass lecture on things we already know.
I want to state that my case isn't exactly unique. My friend with cancer ended up with Bell's Palsy for over a month. So nothing about me is truly extraordinary in regard to what happened to me after chemotherapy.
YOU are important, and no matter what may be going on, each individual should take care of themselves in order to keep their own sanity.
Thanks for reading as always, and if you have questions for me, feel free to ask. I'll be happy to answer.