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.