May 21, 2016

Meeting life on life’s terms with grace, positivity, hope, and strength~

I am focused on maintaining my health while embracing life on life’s terms. I have been experiencing increased pain and tumor growth in my armpit axillary area, because of this, I have increased my pain medication to mitigate pain. While these changes have lessened pain a bit, I too have added a couple beers a day. I ask myself some days if I am actively developing into an alcoholic – I would prefer to not become an addict during this healing journey, addicted to morphine or alcohol. For now, this combination allows me to continue to function and “do life” without the side effects that additional pain medications would cause. It may seem silly or perhaps reckless but it is working for me and I am able to continue my daily activities absent disruption.

I believe that I am at a critical juncture in my treatment, yet again – actually this is a continuous adventure at every turn. I have made the choice to not undergo any tumor marker testing since returning from Germany. I do not need a test to tell me that there is increased tumor activity, I know there is, I feel it, you can see it, and it is causing great discomfort at times. There are moments of frustration that living in the US means I do not have access to medications that were successfully holding the cancer cells steady and pushing other cancer cells back. There are moments when I feel exhausted from this nearly five-year ordeal. Then there are moments that I am grateful for my circumstances because I never would have grown to be the individual I am today. Let’s just say that I have many moments to consider my current condition and experience fully the positive and challenging aspects of each all of which I come to a place of gratitude.

Since my last post, my dear friend Joel – whom I met at Infusio in Germany, has passed away. He was ready and was at peace. I instantly claimed him as one of my guardian angels, I know he understands my challenges and is guiding me while watching over me. Although I only knew Joel for a short time, there was an instant bond – we shared similar struggles and without words, could gather understanding and empathy. It is difficult being a part of a community where I have friends, that are in various stages of potentially dying. It is interesting the paths each of us have chosen and how varied the psychological impact is uniquely expressed. It makes me thankful for the peace that I feel and the endless hope that resides within the depth of my soul.

I am currently giving myself injections to boost my immune system; I have enough medication (purchased outside the US) to do this for a couple months and am hopeful my body will respond favorably. Of course I have my foundational herbs and supplements I take daily but I too am considering revisiting Rick Simpson Oil (RSO)and chemotherapy. I am not sure if I wrote about my RSO experience, but taking it resulted in one of the most anxiety provoking moments of my life – one that I wish to never experience again. Chemotherapy, well this too results in anxiety – but it is manageable with medication and the side effect of not being able to really remember large chunks of treatment is a gift. I have recently realized that I need to consider revisiting treatments that provoke discomfort to potentially circumvent ulceration of my very active tumor site. Yes, this is a familiar place – similar to the one I was in about 12 months ago. Quality of life is paramount to me and currently my quality of life is suffering due to discomfort.

I enjoyed a fabulous visit to Texas to see friends and family. After returning from a recent visit to Texas, I met with my local oncologist to discuss low dose chemotherapy options and utilizing the hypobaric oxygen chamber for wound care. I have an appointment at the end of the month to be evaluated for the hypobaric chamber, I am hoping I will “qualify”. It is crazy, this treatment would provide comfort and healing to my body yet I have to be “qualified” to use this modality. I too know that it is a long shot for approval but I remain steadfast in pursuing this treatment– the worst they could say is no, and if so, then I shall appeal that no, if needed. When I look at the protruding mass that rests in my armpit, the peak of the growth which sits at the tip of several previous incision site endings, coupled with the deep red redness of the skin, I think it’s a slam dunk that I get approved.  As for the low dose chemotherapy, I am considering doing 75%-50% of the last treatment drug I used, Abraxane, on a weekly cycle, to see if this would provide additional relief as it did last time. I know that my body will not do well with full-on chemotherapy as I did last year – 6 doses nearly killed me, literally. I will continue with my practices and will know within the coming weeks what direction I will chose to go. There are no “I have to” kind of speak for this girl; this is my body and my decision on what will be best for my body.

While I was in Texas, I met with Sharon, my Ayurvedic practitioner. She spoke of me changing the way I speak of my condition and treat the area that is causing discomfort. I learned how to accept this mass as part of my physical body, right now, and ways to love and give attention to that which is causing me great physical pain. Metaphorically, this tumor site can be considered a child that is throwing a temper tantrum needing additional love and attention. Rather than being upset by the tantrum, offer love and acceptance of the condition, after all, it is a part of my physical body. It is quite remarkable, in changing the way I experience this discomfort, it makes my condition palatable. I now gently cup my tumors in my hand and talk to them – I refer to my mass as “My Darling”, I offer comfort, love, and hope. You see I want my entire body to stop seeing this mass as the enemy or something bad, instead I desire my body to seeing My Darling as needing help. I want my body to call in the troops to offer assistance; my entire body system to work in concert, finding that balance and regaining complete health. I need my body to not respond to My Darling as an invader, but rather recognizing that this is a cry for additional support, help, and love. I too am asking myself, what is my path of least resistance and choosing this path.

Is it easy right now? No.  
Am I enjoying life? Yes.
Do I have hope? Always.

This is part of my journey and I continue to learn as I go. At times I stumble, but this is okay. Am I uncomfortable, yes. But there are highlights and my ability to reframe is quite spectacular. For example, not having a bowel movement for about 4 days and needing my husband to give me an enema…again, because I cannot physically get to honey hole – if you know what I mean! What is the bright spot you may ask? Getting to poop – there is nothing quite like it, after being locked up for so long. In these moments, I am reminded that it truly is about the little things in life that bring such great joy. As I sat on the toilet with pure delight during my bowel evacuation, I smiled because I am beyond fortunate to have a spouse that has not abandoned me during this process, that instead has made the choice to lean further into our relationship and love me at a deeper level. Curtis cares for me physically, emotionally, and spiritually.  I know women who are not blessed with a dedicated spouse as I am. So through this all – I am filled with gratitude that Curtis is such an amazing husband.

We do have some big family news, we have added a new member to our family, Bella Mia. She is a Maltese/MiniPoodle mix weighing only 1lb. 12oz., when fully grown she will weigh 4-5 pounds.  We named her Bella Mia in honor of my friend Joel. While getting treatment in Germany, Bella Mia was the name of our favorite restaurant to eat at. One evening Joel, his wife Jeanne, Curtis and I shared a meal that we will always hold close to our hearts. Our Maltese Junior (3.5yrs) is getting used to Bella and they are beginning to play together. It appears that Ms. Bella will be in charge of the Garrett puppy group, or so it seems at this juncture. Junior is a sweetie and allows Bella to eat and drink from his dish along with playing with his coveted toy.

Life is good and challenging, I would not have it any other way.

Today, I am hopeful~