Letting it Hang Out

So I’m going to give a quick overview followed by some more detailed info… The fourth round of chemo was the hardest. While I was receiving the chemo drip, I caught pneumonia which put me into Immediate Care. It was extremely scary and exhausting. Visitors would have been a bit much for me to handle. I made it through after a month’s long stay at Seton. Thank you to all for your thoughts and well wishes. Your prayers and meditation brought me through this VERY challenging time.

The results of the fourth round progress have not been measured as of yet… results are ongoing and take time to reveal themselves. I have made the trek to MD Anderson. I am not a candidate for surgery because of the involvement of carotid artery. Things are serious so the next step is a chemo and radiation combo. With the help of my parents, I have found some really awesome doctors that have offered me hope for a cure. Dr. Kapadia is my MD Oncologist through TX Oncology and Dr. Morgan is my radiologist through a local private practice. MD Anderson is a great place on the forefront of different medical breakthroughs. Though they have TONS to offer, I prefer the smaller offices with their unshakeable and sincere attention to bedside manner. Instead of offering doom and gloom to a very well known/understood serious situation, the doctor’s are answering my hard questions and flexing with my beliefs or at least being respectful when I share my spiritual/whole health concerns.

So… I am now temporarily living with my parents. They have been great but I gotta tell ya that it’s hard going back to living with your parents when you’re in your 30’s. Obviously Max is spending the majority of his time with Chris in Austin – I’ll touch more on this very important subject toward the end of this blog entry for sure!!! Right now the schedule is 6 full weeks of treatment. Each Monday I will receive chemo (Erbitux) which is a 2 hour drip between receiving regular saline fluids. The second half starting on week 3, I will receive radiation twice a day (once in AM and once in PM). It will be the same amount of radiation, just broken in two sessions as it has shown great results in cases similar to mine. As treatment continues, I will have to rely more and more on my feeding tube. Eating and talking are becoming more and more difficult but I’ve been told this is a good sign that the Erbitux is doing its job. The necrosis is becoming more and more pronounced in my neck/jaw area. The tumor is about the size of a well ripened nectarine.

The nectarine is taking its toll. I try not to let it bother me, but having no hair, my body shape changing due to all the meds and my crazy self-imposed diet of unhealthy grubbing…. I’ve become much of a recluse. It’s hard to not let this affect me. Let’s face the fact that this is WAY past vanity. Anyone in my situation couldn’t help but notice the on-lookers or the kids that loudly ask parents what’s wrong with me. Just have to keep reminding myself the swelling is a good thing… (there are signs in which the swelling occurs – redness, rash, all that kind of good stuff that is expected with the Erbitux progression). Man, I don’t like this stuff. It’s really not fun and I kinda feel bad for letting the physical appearance stuff affect me as much as it has lately. I keep thinking my mind will change or I’ll be able to get a grip or snap out of it, but I just can’t get past this for some reason.

Anyway… Max! It tears me up that I can’t see him every day. I cherish the time we have together even if it is assisted. Max brings me such great joy and frustration! He’s at that age where he is learning to communicate and is trying so hard to get across his feelings and daily experiences. Max is doing a great job, but everything keeps changing on him… Mama’s sick so Mama moves, he graduates class in daycare but then is pulled from the program (as per Chris’ decision), he makes seemingly random trips back & forth – Houston/Austin, family isn’t on the same page because communication isn’t being addressed even when it’s addressed. It breaks my heart to say good-bye to Max on the weekends. We are slowly working towards a month share but I’m not really sure that’s what’s best for Max. It’s all about how Max acclimates to everything and how I am progressing so everything is really touch and go. I knew this would all be a challenge but nothing like this. Chris and I seem to be making progress when we talk on the phone, but then Chris turns around and does whatever he wants. I know I’ve gotta let things go… he’s the one with Max in Austin and has a right to parent the way he wants, but it’s important to keep me posted on things like daycare changes and/or challenges when Max just graduates from a program he was thriving in and seemed to really enjoy.

I want to help Chris… I tried doing so from a hospital bed by coordinating help even if just in a promise to be around if called upon. Chris says he needs a warm body but doesn’t want to reach out. He refuses to plan help in advance. I don’t think he’s doing it maliciously or to meet his own demise, I feel that he was never taught that advance notice is necessary outside of bloodlines (and inside for that matter) especially if those contacts have children or their own rigid schedule. This is by no means Chris bashing AT ALL… everyone has been so kind to offer help, I just can’t direct anymore especially if Chris isn’t going to reach out when he needs it. All I can say is just ring Chris from time to time to see if the paint is still sticking on the walls. He is doing a good job with the hand he was dealt, Meghan has even moved in with the boys. Teena is still Teena so I’m hoping things will eventually smooth over and we can ALL be civil. The McDonald’s have been so kind, I hope that remains as we journey on sharing our love for Max.

As for me and the help you can give me… your positive energy and hope as I go through this new-ish chemo/radiation combo. I hope and plan to join a support group SOON! It is very important that I get this accomplished as well as finding a local healing team or individual (already put in motion!) Okay… I’m beginning to ramble because I am tired. Love and Light to you all!!