I have been thinking about life, a great deal lately and the more I do, the more I want to capture these memories – if even for a moment. I am beginning to compile list of “stuff”. As I reflect, I am coming up blank – but that is okay; this is part of the new me that I am trying to embrace. I must embrace and accept all parts of me, this is hard at times. If I don’t write it down – I shall not remember! I want to remember all the pieces of my life because they are important.
Daily wound dressing changes weigh heavy on Cutis emotionally. It is incredibly difficult for my husband to see my wound and to see me in pain. Therefore, I take measures to insure he does not see the wound while we are dressing it. Curtis makes the healing paste, comprised of fresh neem leaf’s, turmeric powder, and neem powder. I pack the paste into the open wound; once packed, I place an opti-lock wicking away material over the outside.
Recently Curtis remarked about how my wound looks, I do not recall the specific words, but they cut deep and brought me to an uncontrollable releasing of tears. There I was, standing partially clothed in our bathroom, arm lifted into the air as I was getting bandaged – my tears could not stop flowing. Simply put, I needed him. In that moment, I felt like I just lost him. I want him to change my bandage. I did not want yet another stranger in my home – it’s not a modesty thing but rather an intrusion in my sacred space. I just wanted my Curtis to figure it out with me, that’s all – we could certainly figure it out. We are the ultimate Team Christina and we will do this together – no matter what. Right? I wanted him to love each ugly gross piece of me, even though, even when. The sorrow escaping the pores of my body was deep. My greatest fear looking directly at me. Silently, in my head, I begged him to stay with me, however he was not implying that he wanted to leave me. Curtis would never leave – his marital vows are sacred and he took extremely serious. What was happening for him during this bandage change – he was sharing the pain he was feeling. He wanted me to understand his pain and that he was not sure what to do with it. He did know one thing; he would like some back-up! Totally fair. Completely reasonable. Here we both stood – confused, overwhelmed, not knowing where to go next. We process this journey differently; we ask for what we needed in different ways. Each time we encounter difficulties, we somehow manage to get through them. He and I are determined individuals and Team Christina WAS together!
Curtis continues to share a deep anger, followed by a great irritation, when one may remark, “it is so surprising you [Cutis] would stay, you are so noble.” It just pisses him off, of course he would stay – that is what you do – you honor marriage vows. Then Curtis says he is able to get to a space where he is able to accept the words as they were intended, that of a compliment. He does note that it is a viscous loop that he gets caught in often. While many may think they are making a compliment to the person – it can be received as offensive as well. Think about it this way – he took his marital vows serious, so to think he would even consider leaving is so offensive to him. Next time, before you deliver what you believe is a compliment -give it a second thought.
Let me rant for a moment: High profile “famous” individuals, such as David Foster – really exposed fans to his authentic self, in rock star fashion, He chose to leave his darling wife Yolanda because she became chronically ill with Lyme disease. These events have brought even more attention to the sheer number of spouses that choose to leave their loved one when they need them the most. It is a rather disgusting trend occurring across the county. I recently listened to an interview Yolanda participated in with Dr. Phil – the discussion included Yolanda stating “I am not the same woman that he [David Foster] married”. It made me think that – in truth, we all change, develop, and grow in relationship; none of us are the exact same person. So to the men and women who have left their significant other in their greatest time of need – I offer, how does one register this action as acceptable in nature? In my world, real men and women stay, love, and support, their loved one through the illness – even though, even when. Is it difficult to be the caretaker, absolutely! Are there times where choosing the leave the relationship is the right answer, while of course, there is always the exception. I am fortunate that I know my guy will stay with me no matter what – this is dedication and this is yet another reason while I love my Curtis so deeply.
Over the past two weeks I have noticed shift in emotions – I am a crying person. I once was mortified to consider myself in this category yet today, I embrace the status. The act of crying truly heals the soul and makes one feel cleansed and refreshed. I cry. I want to get better and for my body to heal itself. Do I feel as though I can beat the odds and continue to live? I say yes! I too look at my ulcerated tumor along with acknowledging all the pain I am in and wonder, can I really? Oh trust, if you saw a photo of the tumor you too may be stunned by atrocity that has developed, opened up and rests comfortably in my armpit. I have not decided if I want to go public with the visual – I think it may make everything worse. Instead, let me describe it to you. First of all, it is quite fantastic – yet most things I have seem to rock that direction. It literally looks as though a fish head is emerging from my armpit. There are breathing gills, eyes, and a large mouth, it reminds me of a catfish. So yes, I have a freaking fish growing from my armpit – Happy Halloween?!?!?!?!
I am in this interesting phase of my life. I remain hopeful that I will become better, yet I am on hospice. How does one resonate that in their mind. The goal of hospice is to control pain and provide comfort. A patient is placed on hospice if believed the patient will pass within 6 months. Hospice and I are getting closer to finding the perfect balance of pain management that still allows for me to be up right doing things. It was oddly decided last week, more so by the RN, that 5 on a scale of 1-10 would be my goal. I will need to clear this up today because my pain level goal will be a 3. I understand that they may bring about additional sleeping – but this is okay because I need to sleep to heal my body. Right now, my pain rests around a level 5/6.
The worst part now is that Curtis and I are both struggling – with similar things, yet the desire and/or ability to discuss these are not connecting. For me, I am searching for validation and/or acceptance. I thought I had completed my inner child work on this topic, and several others, many times over the past five years; yet here I sit, desperately wanting to be told:
Thank you for the sweet card
You made my day with your gentle hug
Thank you for ……
I am not sure why this issue is appearing yet again; what I do want to figure out is how to manage this, clear it from my plate, and move forward. I have to know that I am enough without validation of others. I am good enough. I am loved. I perfectly imperfect. Life is interesting in that it has a way of making us go deeper with our thoughts in order to become a better person. Whatever the case may be, through the occasional doubts, road blocks, holes in the roads, and signs saying things are not possible – Curtis and I will continue to stand strong together. You see, we do know how to lean into each other and that is what we do. Walking a tight-rope is not an ease foot – but when you believe in yourself and the other person, there is no failure. For Curtis, I believe part of his hold-up is that he may be talking with a person that does not know how to bring relationships together, but rather creates ruptures, ultimately causing new fractures. If this is truly happening, I hope this individual can quickly find themselves and correct these errors quickly. Time is something we do not have, and you know this.
We had our weekly meeting with my hospice RN to discuss pain management and wound care. Last week wound care proved to be painful and unpredictable. We were able to design a new medication treatment plan – we started ER Morphine and now have doubled the ER Morphine to (90mg, 90mg, 90mg, 120mg) from last week. This was a new medication we began last week, although I have taken Morphine ER previously, with little to know impact. But this time, in conjunction with all the medication I am taking, it is now working! I too was able to get an increase in my Trazodone to 100mg to sleep better. My body needs rest in order to heal. Pain control, this is a tricky situation. Just when you think you have it under control, it all goes sideways and PRN medications are rolling in like crazy. I am hopeful that within the next few days I will be feeling great. Most likely I will be napping daily, that is a part that comes along with increased pain medication. Although the level I am currently on would render most patients bedbound – sleeping most of the time. My body just eats through those medications like crazy!
How am I doing at walking this tightrope?
I would say I am doing it in my perfectly imperfect style.
Doing it my own way.
There is no right or wrong.
It just is what it is.
Yes, there it is, she is back!!!
Pay close attention, to how I process my hurt, fear, and pain. Perhaps there is something you can take from these writings that will inspire you to be a better person, to do things differently, to love yourself, to own your stuff, to offer love, and to keep moving, do not get stuck. Getting stuck in a patters or loops, I speak of often. You see, it does not matter how fast you are moving, it is simply that you are moving forward. Life is like this; we must find a way to continue moving forward as to not get stuck. I want to offer my sincere gratitude for allowing me this writing to process and resolve that which was hurting my heart. It is all good now.
Many have asked how they can help our family. One of the easiest most helpful ways is to send gift cards to stores such as: Safeway, McDonalds, Subway, or Panda Express and mail to either my home address or to PO Box 192 Philomath, Oregon 97370. The gift cards make it easy for the kids to go grab a quick bite or pick-up groceries for the family.
Thank you to everyone that continues to pray, send healing thoughts, and positive energy our direction. Although I am unable to respond to every email, text, phone message, FB message etc. please know that I am reading and listening to each one and appreciate the continued support. I really enjoy opening the mail box to find up lifting letters, I thank you all for these words that are enormous gifts to my heart and soul.
Today, I am hopeful~