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~