Thoughts upon thoughts

 Ten years ago, I walked into the oncology clinic as a self-referral for breast cancer. I had no idea what I would be engaging in and what would be expected for me in all of this. I had no idea what the future would bring, who would bring it and what would be left behind. Now, 10 years, four months later, I have had a battle that no one should ever have to be part of. Three oncologist later, two surgeries, six rounds of chemotherapy, 33 rounds of radiation, metastatic breast cancer later, a naturopath, breast cancer navigator and hundreds of pills later, I am here to day to say that things could have gone much better. 

This week, I called the CMO's office to file a complaint and request for some assistance. When I spoke to the exec secretary, I called to say that I wanted to change oncologists and listed the reasons why. She said that she took down five pages of notes and that she would contact the CMO responsible for that clinic. Here we go. I placed in summary that I have been subject to neglect and from that point, I want things changed. So, will this go anywhere? Will I be taken seriously? I was told that I would get a call on Friday (end of the week) and this is Saturday. I told her that even if she called at the beginning of the week, that would be great and welcomed. 

What can I expect from this conversation? Will it be good to return back to the clinic? I wonder. It has me a  bit concerned. 

Important things

 Yesterday morning, I made a call that will be life changing. I had contacted the Chief Medical Officer's (CMO) office for the Regional Cancer System. I have used both avenues and have exhausted my options and now I have called their office to file a complaint, ask for a new provider or be discharged from the clinic. I was able to express my deepest concerns and yes! used the most difficult words of all--neglect. 

For the last couple of years, since Doctor told me that he was a survivor, I have had a very strange relationship with him. The Doctor-Patient encounter is supposed to be sacrosanct. Why isn't it? Why is it that it is an opportunity must arise that the relationship is "less than"? I am less than and I understand that. My station in life will be lesser than the provider's and from there, to be treated differently; however, never with disdain. I want people to know that we are not to be treated as less than and despite what education we may not have, we are to be treated with respect, dignity and honor. If that cannot happen, then these persons need to be removed from their ivory tower and allow things to change. 

Since my rediagnosis in 2014, I have been pushing for more education. I have looked in ever nook and cranny for it. When I was told that I had "slipped through the cracks", it changed me and I would like to say for the better. I have read all sorts of magazines, journal articles, now books and text books so that I can learn. This phone call yesterday morning changed things in me. I want to advocate more for others who have no idea what to expect and to promote health. I have walked in the position of a Breast Cancer Navigator and I push to help others in their walk. I want more. I want different. I want health. 

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. 

Tipping the scale

 This week has started to be something I did not want or expect. Of course. I had gotten the message from the clinic manager that my lab results had not been sent to either my PCP or my Oncologist. So! What I did was to bring in a copy of the labs and had them faxed to the Oncologist. I, in return, emailed the clinic manager and let him know what was done and that the providers should have several copies of the labs. Since I had called the lab company and asked regarding forwarding the results to my provider. So, from what I understand, both my PCP and my Oncologist will both be "looking into it" from their end, I will be seeing results ... when? this is an uncertainty that I really do not like. I realize that labs and results often take time to get to providers. Too, for them to research what has happened may take some time. With COVID, this may take extra time because there are less people doing the same job of previous people. So, these matters with why my labs were the way they were is going to remain a mystery until someone decides they will are willing to get in researched and looked into. 

I have been so undecided about what to do. Do I make a same day appointment with the PCP? Do I contact Oncology about what to do when I have no respect for the clinic? Do I contact the Naturopath when I was told to "hold my emails"? This is just perverse. I hate not knowing exactly what to do and guessing. I realize that it is just what I will need to do and to just wait. My health is important to me and I have been working hard to keep myself healthy and pushing on to my dreams for so long. I want my dreams and I want a clinic that will be there to help me in my pursuit of dreams. I debate within myself. I think that I will win and just quietly walk away from some of these people. 

I am afraid of one thing: more conditions that might pop up and need to be managed without quality care. My greatest fear is being treated like I am medical detritus. 

Just imagine this ...

 Amazing things are happening. At the beginning of the month, I had labs completed. The labs came back with some values that were a bit off--my potassium and my Red Blood Cell counts. My potassium had tanked to 3.5, at the normal range, and my RBC were low and out of range. This is problematic. My oncologist has not responded back to the labs and I have asked my primary to look into them and tell me what is going on. What is going on with my potassium and why it is so low when I supplement with an incredibly high dose? Too, why did I become anemic so? Well, still need to find out about them both, but my letrozole will add to the issues of my gut and the intrinsic factor for anemia. I have been feeling so terribly poor and a few weeks ago, I had had a difficult time at work. So, I got in tough with the manager of the clinic, explained all of this to him and requested for my provider to be changed: a transfer of care. I have had so many difficulties at this clinic and I am getting quite frustrated with them. I do not want to go to another clinic and receive far worse care. According to their statements at the clinic, they are the leaders in oncology and can care for us. But, for some reason, the care comes when the patient is unaware of what is going on. I have medically distanced myself so that they can just keep their "care" and to move on to learn and study what is going on with my body. Now? I have doubled my iron intake and my folate to accommodate the changes that I am experiencing. Anemia, low RBC, has really been tearing me up. I have been experiencing light-headedness and fatigue. There are a lot of other side effects that are very serious. But for the most part, this is quite the trouble. Wondering how I am going to work long shifts will be my concern. 

Now? the Naturopath. Do I email him to let him know what is going on or do I just let it go and look for another provider? I am hesitant because I have been with this meathead for six years, but the last year has been filled with a lot of anxiety and stress. COVID keeps us all away from our providers, but even more so away from quality care. There is an provider in this area and just to the other side of town. It would be nothing to see that person; but, do I want to change. I suppose the time will come when I will know definitively. 

I have a new ENT now. This man is something else. Throughout the visit, he continued to put his hand on my knee. I think it was part of reassuring me of the care that he was going to take care of me. He looked in my ears and was able to determine that I have a-topic dermatitis and was given ointment to help with it. This has been itchy for so long and I have had a discharge from my ears that has been slimy and gritty. Welcome to healthcare! So, he said that my ears may actually have neuropathy and that he wanted to inject me to help with pain relief. So, I agreed. And this is the last time I will have this done. The nerves that innervate my eyelid are sore. All this effort to help me and to have changes that come from chemotherapy is just a bit over the top. I am just frustrated because of all the damage done by chemotherapy that providers either do not understand or are not willing to discuss them with you because of the possibility of not understanding. Yes, many patients are not going to understand the whole aspect of what is going on. Patients also may walk away from healthcare altogether and suffer even more. There is a lot to discuss with any patient and it is our job to be sure to understand. When a patient does not want to learn, then the decisions must be made for them. It is part of care. I know that this is a difficult one for any provider. But, it is important to inform the patient. Important!

A lot is going on. I will keep you posted. Who will be my new provider? 

Support ... A cuss word?

 Last week, I was asked by one of the staff at the new ENTs office about support. As I had recounted my story about their ENT that was poor to assist me, she asked, "how can you be supported?" Well, this is a hard question. I have received little support from so many that this question put me to tears. I had had a difficult night trying to calm myself about this and to emotionally prepare myself for the upcoming appointment. 

I have been seen in Immediate Care multiple times for the same exact thing, again and again. My PCP referred me to the clinic again for an emergency referral. So, this means that because of the repeat visits, I have been referred again to see another one of the associates in the clinic. So? What will that take? I will not see Dr. MJ again and that pleases me just fine. I have had to put my foot down about two of their supposed diagnoses. I have been told that I have TMJ as well as trigeminal neuralgia; this, for them, would explain the amount of pain that I have been experiencing. Well! Two weeks ago, I had a wisdom tooth pulled. There was no pain from the procedure or even after that. If I had had these two diagnoses, I would have been in incredulous pain and suffering seriously. I had emailed my PCP and let her know of the procedure and the outcome and to put these diagnoses to rest. I am tired of all of this mess. Deeply tired and frustrated. 

How can we be of support to you ... this is a question that I must really think intensely about regarding my ear pain and the causes of it. How can the new doctor and clinic support me? Well, do not placate or squelch my concerns. I have expressed that this whole matter is oncogenic and that little can be done when chemotherapy has caused and continues to cause serious side effects and such damage. 

Support? help me with my anxiety and how to keep myself calm and from not moving from these clinics to someplace where the sun shines and there is no worries from this type of behavior. I am getting tired of it all and I am seriously considering moving away to find a new place to get better care. This has been on my mind quite a bit and I just am having a greater time squelching it. I simply wonder time to time if the troubles are from just a poor medical system. 

Just wondering. 

And yet another breakthrough

 There are times I seriously wonder about the quality and tenacity of my medical team. Just when I think that I have had enough, a marvelous breakthrough happens.For nearly six years, I have had chronic ear troubles: pain, irritation and more. Several weeks ago, I was seen in Immediate Care for my ear. I was experiencing a lot of pain, once again, and was able to be seen by my favorite provider--Dr. L. I have reached an all-time frustration about my ear that I have told these providers that nothing could be done with my ears. And to prevent this from coming is not possible, rather to be able to treat from irritation to irritation. I have expressed that my ear troubles are oncogenic and from that point, cannot be adequately treated. Dr. L was able to do some "homework". That made me feel quite encouraged. He had expressed that I have been on the right track and that my lymph system is scarred from chemotherapy. Lymph channels can get scarred and from that point, the lymph can get impacted causing the pain and the irritation. That made complete sense and from that point, I can deal with the knowledge that things have reasons. While I have believed that little can be done, there is some more hope when there are answers to the troubles and problems. So, the idea is lymph massage. I need to conduct regular lymph massage to encourage the drainage and to help to reduce the pain which comes from the impaction. So, I was able to get some massage tools for my face from Amazon and to start using them on a regular basis. I realize that my work at home is changing and that I need to invest more time with my daily care. I am tired from the routines already and look forward to a vacation. But, I know that I can do a little more to take care of myself. 

It is amazing what we learn. Both my oncologist as well as my ENT have no idea about what is going on with my ears and it took an Immediate Care provider to do the trick. I love that I was heard and I love the idea that someone was thinking of me to try and get answers about what is going on. I was taken seriously. It is time to learn. It is time to continue moving forward and it is time to keep smiling. Keep smiling and keep shining and never stop. 

Thinking. Trusting. Believing.