The battle of the ... courageous

 Yesterday, I had the most important conversation with one of the managers of the clinic. She told me that both the two of the administrators of the clinic are "colleagues" of hers and she wanted to know if I was expecting a phone call from either one ... absolutely not. I have already voiced my concerns and they are not being taken seriously regarding my request to move providers. It has been quite the battle here of late to request anything and to expect my request to be taken seriously. For years, I have been doing this all on my own. I had not taken any consideration what being a cancer patient would entail. From the time that my first oncologist dropped me, I had not idea what taking care of myself would be. I had nothing to base it upon; but, I am an astute learner. I had no idea what was waiting for me and the battle that I would have to engage in for me to understand what taking care of myself would mean. 

Yesterday, I explained the story of what I have been experiencing and for what I would be enduring for the name sake of what the Doctor would not be doing. Since July of 2019, I have been reading and studying about my labs. But, from 2014 when I was told that I had slipped through the cracks, I have been studying and researching on my own. I have had to review my A&P and to be better at understanding what I have been enduring. I have had to study what may some day kill me and to be quite determined to push through the burden of emotion that I have had to wage through. Too, not having anyone to discuss matters with has been even more -- angering and upsetting for doing this by myself. Because of that, I am a Breast Cancer Navigator through what I do online and I am very proud of that myself. I am pushing and working to do more. I have had to explain to myself about what I am going through, my emotional burden and my own emotional regulation. At work, I do not tell anyone about my cancer journey. And from this point, I am determined not to explain anything to my medical oncology team about what I am going through. This includes my Naturopath. My history with these two providers is not good and I will do my best to keep everything quiet just as I do at work. I will do my best and to ensure that I do not reveal anything. While this is everything that I work against, I must continue without waiver. I must do as I must. 

I have still yet to hear back regarding the response to move providers. If I cannot move providers, I will remain quiet and will manage my own. I will request to have my labs and letrozole as normal. For anything else? I will remain silent. This is not defeat but just my strategy. I am looking forward to wellness and strength and at times, we need to be willing to approach in silent retreat. 

I am strong. I am willing to be more determined and am willing to stand upon what I need to in order to  be. 

Gearing up for another round

 There are many things that are bothering me today; many things indeed. 

I have had my most recent appointment with my Oncologist this month and I am very frustrated. I have requested with one of the office managers to move Oncologists. The conversation has not been favorable as well as responded to. So, I called the office supervisor and this was met with even more disdain. I do not know why this is not met with acceptance. I have had frustration over this person for some time and I am losing my patience. This experience is showing me that I must continue to press for patience and not lose my compunction. I must be more dedicated to my care than I have ever been before. 

This started a couple years ago when Doctor had told me that he too was a survivor. I am happy that he has managed his health and is well and able to continue to use his medical degree at work. However, I am not requiring any confidence about his care over me because he is a survivor. He is the medical provider and that makes him able to understand my plight. I am angry, too. This is something that I do not care to share often. He did not know where his disclosure would sit with me. I can say that it did not sit well with me. I am angry because of what cancer did for me in my life that I have had to work hard to overcome and fight through regardless. I lost my family, church, friends and my career. I nearly lost my life and my sanity. He has his family, friends, medical practice and has not lost anything that I can see. I suffered greatly that I cannot share with this clinic. I suffered greatly that I cannot share with others. He has the respect of others while I had to work hard for the respect as well. 

I have fought very long and hard to know and understand what I am going through. I have purchased books, read countless journal articles and have discussed with other professionals about my health. I am dismissed at this clinic. The past year with the Naturopath has been difficult. Since the Naturopath used profanity with me, he has lost a patient and I do not lean or refer to him for anything. I simply study like there is no other. 

My labs are messed up some. On 31 July 2019, my labs came back different. My MCH and MCV were elevated and my research indicated that I was suffering from pernicious anemia. Although my GI cannot agree with that, my labs say otherwise. So, I started to titrate in the appropriate B vitamins and from there had the most exciting outcomes. My migraines went away. My leg cramps went away. My bladder spasms went away. Why didn't any of my doctors mention to me this? They did not know? I find that hard to believe but truly do believe they are that under educated about supplements and the like. My health improved because I did not lean on my Provider but researched myself. My Provider did not see that this was important and from there, did not give me direction. Now? My RBC dropped, tanked rather, and he has said nothing. Labs were completed and I am iron deficient. I have been supplementing in my iron and it is not very high. I have communicated with my PCP and expressed my malcontent. When I had seen that my RBC had dropped, I had doubled my iron. There was no direction from the Oncologist about what was going on. There was no direction from him at all during the appointment other than adding more labs. Since the labs have been completed, he has not been voicing his thoughts. So, I have been told that the Lab that does my draws do not send him the results; however, this is not entirely accurate. The clinic can create an account for him and he can access these labs through their website. I am tired of excuses. I will be certain to call the lab and ask about the results that are sent to the Provider. I have had enough of this mess and I want off this merry-go-round. 

So, another issue. I have been seen by two of the ENTs at the clinic. One of them I had told him that there was nothing that could be done because this is oncogenic and nothing can be done. So, the provider will not see me. The other provider in the clinic saw me and twice placed his hands on me in different ways. On one appointment, he had placed his hand on my knee three times. On the second visit, he had placed his hand on my knee, my shoulder and rubbed by back. SO? What part of this is ok? I had called the clinic twice. Both times, I had called about what he had done. SO, I called my insurance company and filed a complaint. I let them know that this behavior made me feel very uncomfortable. 

Have I shared with anyone that I am a domestic violence victim? No. Absolutely not because I would be handled with different care and things would be more speculative. I have not shared with anyone that I am a victim and that things are odd for me at times. I hold it in and I do not share anything with them. Would I have respect? No. I seriously believe that respect would be lost and there would be a different set of hands on me. I have seen it at work with many who are victims and it is difficult to tell.

What can I do? I must work harder and harder to achieve what I want. I know that the standard of care can change. I have been neglected and this has been difficult for me to accept. I find if difficult to believe that care is difficult to provide. I keep silent and from this point, I will remain silent. A standard of care is not afforded to me through Oncology and I must be my own Provider. I will continue to seek my own health and work towards superlative care. 

Walk with me regarding this journey so that we can all achieve a higher standard.