Cancer Part two of Four

Well sports fans,…. Okay not really, I don’t feel its appropriate for me to use that “sports fans” tag, since I’m not really a sports fan. Its pretty fair to say that I’m kinda an anti sports fan… although I do enjoy the amount of people that love to enjoy this, so I suppose we will direct that sports fans at pretty much anyone other than me reading this blog. … Back to my journey with cancer.

When last we left our intrepid heroine…. There were 18 weeks, which I handled by doing “Alethia things”… in my 46 years of life, I can honestly acknowledge there are a few good, a few neutral and a few really bad copying mechanisms I have for life in general, I suspect that this is probably the case for most people, one of the “good” is my ability to feel full belief that I will have the capacity to climb whatever mountain I have chosen to set my foot on, thru the power of song. I made a spotify playlist for my 18 weeks of chemo treatments. (6 treatments, 3 weeks part, 7 days in a week — 126 days

This was my plan, I’d just hide out in a bunker of myself for these 126 days, and basically handle my life as a microcosm, fighting against all the bad, and letting these toxic chemo drugs do magic work of killing my tumor.

Still no plan was discussed about causes, still no source, and I was still fighting myself, still intent that “I was entitled” to not have cancer. I could “pretend” it away. I could get through 126 days, and all the aftermath and I could just go back to my old life, old ways, and things would be just fine.

Bad things were happening all over my body. I felt miserable. Chemo drugs; at least in my experience every one I have ever had reason, rationale, or argument to take, cause issues with your cognitive function. They also cause issues with pretty much every system in the body. They are designed to destroy weak cells. The idea being that cancer is a weak cell. There is a fault to this logic however, that in a body that has developed cancer, there are many weak cells. In a body, where a cancer cell, which we are all exposed to every day millions of millions of times, has had purchase to develop into a tumor, has had time to thrive and grow into a protected colony against which the body’s own immune system has been fooled into protecting, this cancer cell is about as weak as the Mob during the great depression. Its worth recognizing these things, because when you inject chemo, with intentions of doing no harm, it’s definitely worth considering that you are absolutely going to be doing harm. This is not something that any doctor is unaware of; having had extensive trainings, lectures, learnings, and advanced education on the effects, risks, and side effects of every chemo drug and the hopes they provide, but then we all have our copying mechanisms for dealing with unpleasant things.

I remember vividly after treatment number 5 a day, laying in bed, where I was just too weak to do anything else. I remember feeling the sunshine on the pillow next to me, and feeling the warm spiritual touch that comes from the holy spirit, god, or whatever source you personally take power from… Feeling that presence overcome me. I remember feeling so weak, so broken, so unable to understand why this was happening to me. I felt that presence ask me if I was done. I felt the full and complete comfort associated with permission to die.

In my life, this permission to die is not a small thing. This wasn’t the first time I’d felt that. Anytime, when I have spoken to source, I have always been given permission. My life is a gift and a blessing, and I am here thru the grace of god, and specific requests that have granted me access to this life, in this form that is Alethia. Its never a question of permission for me, its a question of am I done.

I contemplated this question, in my head for the next few hours, mostly because I was really too weak to do anything else. I thought about all the people I loved, all the experiences I’d had. I thought about all the things that made me laugh, and things that just never ended being a source of joy.

I found a one thing, I wanted to accomplish that pushed me to say, to myself, to source, to everything, “No, I’m not done yet.” and its sort of funny, because source has this sardonic sense of humor, because no sooner were those words thought and passed in my consciousness, than the expected and inevitable follow up occurred of response: “This too shall pass”

And suddenly I was still as weak as I was, and I still had one more treatment after I got thru this one, plus all the rest, but I knew I was alive, and I wasn’t going to die today.

I got thru the treatments, and then I met with the surgeon. I had always, up until cancer believed my body to be a temple, of which I was a curator, not a sculptor. This meeting, showed me for the first time, that I would get to be a sculptor. It opened this possibility up, due to necessity. They would need to remove my left breast, to ensure that the cancer was “gone” they would be taking out lymph nodes on the left side, to get the one where my cancer had started to sneak off.

After discussion and consideration, a few minor points of vanity to mention, part of why I let the lump go in my left breast for so long… was a vanity thing. Growing up, I’d always had an extreme dissymmetry between my breasts, more than a cup size. This is both a visible, and emotionally uncomfortable thing. The tumor afforded me the luxury of symmetry. Pretty close to perfect harmonious symmetry. It is not easy to admit, that the lack of any other discomfort from the tumor, and this happy pretty symmetry, is part of why I took so long to pursue any type of resolution. Following the generally old adage “If it ain’t broke don’t fix it”

This changed now, with the “tumor gotta go” medical approach. So now, I would be having a left breast mastectomy. I opted to do a Trans flap reconstruction. My surgeon wanted to give my body some time to heal after the chemo before she radically shifted everything about it for not the last time.

One minor point to mention during this blog. I have to give a shout out to my medical team. While I have a lot of small inconsequential notes, and not small disconnects over the entirety of my experience, these individuals have been nothing short of a treasure to me. They are valuable, smart, cunning, shrewd, and blissful people, some of the best minds in medicine I could have hoped to encounter, and while they each have had their own day, their own agendas, their own struggles both professional, medical, and otherwise, they have all worked very hard to provide me with the highest standard and quality of care, this I have never felt was in doubt. If I had ever truly questioned this, they would not be part of my medical team, I have no time for doctors that are not in their bliss, there are enough problems with the medical system, the insurance system, and the pharmaceutical system which are all pretty far behind my grasp of correcting at this time, for me to ever have time to hold a doctor that shouldn’t be a doctors hand.

I was scheduled for the surgery, and had the surgery, had stellar results, and I could feel the day after the surgery, a lightness in my chest. I could feel the darkness of the tumor gone. The healing from the reconstruction wasn’t nearly as toxic or difficult as the healing from the chemo drugs, and I was still taking the HER2 positive chemo drugs (the ones that suppress estrogen) for another year. The surgeon that removed the lymph came to me in the second day following my radical surgery. She explained that she had needed to be super aggressive with removal of my lymph nodes, as apparently they were unable to locate any cancer. She removed 25 lymph nodes in my left side, and none of them showed any cancer in them. While I recognized the doctor was using her best in the surgery judgement, and that her outcome was not atypical, I was not prepared for removal of so many lymph nodes. I suppose maybe it would have been better if the chemo had not killed that cancer cell off or if I had just completely declined removal of the lymph nodes all together.

Lymph nodes are important. They are not flashy and red like blood vessels, or tactile and so emotional as nerves. I knew they were important, but at no point was their import covered with me by a medical professional. They were just taken out, and I was not advised of the side effects of this removal…. until a year later when I started to have side effects, in the form of Lymphedema.

I healed from the surgery, and continued to have my every 3 week chemo drug treatments to suppress Her2 Cancers. These had fatigue, brain fog, and general mild other side effects, they prevented me from trying to return to work; as I continued to isolate myself.

My medical team strongly worked to persuade me to have radiation. They wanted to radiate my newly reconstructed breast, just to ensure since they didn’t find any cancer in the lymph nodes they removed, they wanted to radiate me “just in case” they missed something.

Still at no point was the “how did this happen, how did I join the cancer survivor club” No discussion on “don’t do this to not get cancer again” No discussions of anything other than carpe diem medical treatment, and what I mean by this is – triage, handle the great concern, with no thought or consideration for what it means, how it happened or what needs to occur to prevent it again.

More next time in Cancer Part three of four.

Cancer Part One of Four

This post will be part one of four, where I discuss a few not fun facts, about a not fun thing I am dealing with, going through and otherwise choosing to learn, by necessity, in order to survive.

Time for a History lesson of me. In June 2016, it was determined, much as I had suspected for the few years prior, that the lump in my left breast was in fact cancer. I was initially diagnosed as Stage IV, as the cancer had metastasized to my lymph nodes already and was presumed to be elsewhere within my body yet undiagnosed.

Stage IV is the scariest stage to be diagnosed, because it effectively means that western medicine doesn’t have a “cure” they can sell you, and they are more concerned with keeping you alive as long as possible than anything else. This may sound a little bitter, but its more a realistic emotional reaction based upon my personal experiences.

Within a few more weeks of testing, a surgery to install a port, and my first “chemo” treatment. It was later Re-diagnosed as Stage 2. This means in humble people jaron free speak, western medicine has classed you as: “Good news, we think we can reasonable “cure” you, if you follow these toxic protocols we give you.”

Up until this point in June of 2016, I had never had surgery. I should not gloss over the fact that from the time of diagnosis, till the time of re-diagnosis, and beginning of my “stage 2 journey to healing”, I had undergone some of the most frightening experiences known to humanity. A mammogram, a biopsy, a surgery, a chemo treatment, a CT Scan, a Brain MRI, and so many doctors appointments, and planning and educations for all of the above, it hardly bares mentioning that my head, heart and soul, and that of my loved ones was still spinning.

My “protocol” was going to be 6 grueling treatments of chemotherapy, that were guaranteed to make my hair fall out, make my nails and skin brittle, risk possible permanent damage to all of my internal organs, as well as my skin. I was advised that once the treatments were finished, I would be referred to a surgeon for removal of my breast, reconstruction options, and then referred to a radiologist for irradiation of the reconstructed skin. I was not given options, no other details were discussed or reviewed, this was “the way it was to be”

I was educated on the fact that I was triple positive, a fact that was relayed as being a “super good thing” as it meant that there were hormonal suppression chemo drugs, I’d be taking for 18 months, that would prevent further outbreaks of the cancer in other areas of my body.

I was immediately put into flight or fight mode emotionally, spiritually, and psychologically. Having no time to breath and consider my options, having no recourse other than to follow the “experts” advise.

At no time was the “cause” or “root” of this problem identified. At no time was diet or best course discussed. When I asked the best diet for chemo, I was generally told “whatever I felt like eating”. This honestly somewhat made sense, since in addition to the mainline chemo drugs they were pumping through my port, they also subscribed steroids and 3 types of anti nausea meds, so it really didn’t matter much what I ate, since my body was so heavily medicated that my immune system had no hope of helping me out.

In addition to the medical rollercoaster ride I was now experiencing, there were three other “necessary” amusement “rides” for me to embrace during this time.

The first was my work. I had been working, for a company for many years, 12 plus years, and I was suddenly, incapable of returning to work. This caused a void in a routine in my life. I suddenly had more time to focus on how truly miserable I was feeling, with no daily satisfaction from the small things, at my job that had been satisfying for me. At this point, back in 2016 when all of this was occuring, there was no thought in my mind of “not” returning to work, it was not knowing when I would be able to return to work. This created a state of frustration both in myself, and I’m certain for my colleagues. The environments at businesses in our country, The United States, are such that perpetually we are overworking our staff. This greats better profit margins, but creates a tremendous amount of stress surrounding incidents where an employee is forced to go on a long term medical leave. I was a basket case. I felt horrible leaving my teams, my employees, my colleagues, in the lurch, to tend to this most vital thing, my health. As if this feeling of guilt, and responsibility weren’t enough, in order to financially provide some stability to my family, I needed to jump thru the hopes to get short term, long term, and extended disability – All of which, are by design intended to be excessively convoluted. These required a jobs worth of follow up to ensure that I was qualified, that the paperwork for my qualification had been filed by me, by my employer, by my doctor, and had been approved by multiple sources at the insurance company. This process has been ongoing, and judging by the number of hours I have spent thru this process, its not unlike having a job. I am truly grateful to have been “prepared” in such a way so as to have paid for disability “just in case” for years, for this incident. I am also grateful for the time of the nurses, and doctors (multiple) who had to spend some of their time, away from patients to file my claim information multiple times. This process was a nightmare, continues to be a nightmare, and is one that I dread over and over again.

The next of the amusement park of cancer that I had to experience, was sudden brutal realization that i was no longer on the elite outside of “I don’t have cancer” Now forever, I would be a “cancer survivor” which is basically what they call you once you are diagnosed until you are dead. You are a cancer survivor until you are dead. I was now a label. I have always been a label in my life. A white woman. An obese white woman. An over 30 non-college graduate woman. But now suddenly, I had this other label that would forever define me. A Cancer Survivor. This just didn’t seem acceptable. I fought against this. As anyone who knows me will tell you, when I feel something is unfair, I will be the first to stand up and ring the bells and cry foul. Well, I looked at this label and I said “Nah this ain’t me” and I did everything humanly possible to avoid having this label, for no real other reason than I didn’t want to have it.

But wait, there is more, there was another rollercoaster of emotion waiting for me to struggle to come to terms with during this personal war against cancer going on. This one was a little bit more insipid and mild all at the same time, wrapped up in a pretty bow, and was the most toxic fruit cake of all time. That of my family and friends. All well meaning, all well intentioned, all filled with their own worry, regret, concern, hopes, inspirations, well wishes, needs, and generally aspects of being human. Suddenly I went from being a rock for everyone else, to being expected to be a mountain for everyone else. It isn’t that they intended this to be the case, but its more that they had these expectations that I just couldn’t fill or fit. They wanted to be there fore me, to provide assistance to me, all in ways that I couldn’t figure out how or what to do with. How did this happen? What did I do to create this mess?

Stay tuned for Part 2 of my journey.