How we move forward

Well, a full day after the communication with the Director of Quality Control of Clinic operations, I have had. She spoke with the two clinic administrators and she has wondered if I would be willing to have a three party meeting from the clinic. I said no. There has been opportunity for many months for this to happen and it has not brought up except for now. This is not good for me. If they were serious about the manner in which my care was conducted, they would be concerned. But, because I did speak up, and pressed with many players in the clinic, there was conversation. I had tried to take it in-house with little response except for "sounds like you are unhappy at the clinic". This was a red-herring about what needs to be done within the clinic and I am aware of that. They have been put on notice that there are others that are aware of their behavior--all three including Doctor. So, next? Do I contact the State of Washington or the Board of Oncologists? 

So, what next? I have been referred to another oncology clinic. I am not pleased with this clinic that I am being referred to and do not want to go. I would simply prefer not to go. But, with all that is going on? If something were to happen to me and I need to go back to State insurance, that clinic will not accept me. So, I would rather not take the risk. In 2010 when I was diagnosed, they did not want to take me. So, what has changed? 

I am determined and I will continue to study as I have told her that I would. I was told, at work, to lower my expectations of others. So, I told this person just that. I was told that I needed to lower my expectations. So, I will lower my expectations of my medical team and not expect them to do anything. Is that right? Well, they do not do anything to begin with so it makes no difference. I will continue as I have done but with a great expectation of what I need to do regardless of others. I will continue. 

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. 

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. 

The medical establishment

 We are the control. We are the subjects in medical observation and must accept the manner of treatment given. This can be both functional as well as dysfunctional. This week, I have been in the doc's office three times. One for the ENT, another for the Ortho, and finally for Immediate Care. I had a follow-up appointment with ENT for my ear troubles when I was seen in Immediate Care about 2 weeks ago. The appointment did not go as well as I would have liked it to be. The discussion was that my ears looked "fine" when they indeed were not. In this discussion, we had discussed referred to an Otologist who is a subspecialist of ENT, and this person would be about an hour away. I am not all that enthralled at the aspect that the provider is that far away. I had expressed that this seemed to run cyclically and I believed that it was oncogenic. The Provider did not care for what I had to say, simply that there was nothing anyone could do. He wanted to give me a stronger strength of steroid cream for my ears. I said no and as we were walking out, he asked if he did a good job. This was my third time seeing him and I believe my last time. When I was in Immediate Care, Doc had said that it was counterindicative for me. So, increasing the strength of steroids is not ok. I need a provider who is willing to communicate with my Oncologist to determine the right course of treatment for me. 

I went to Ortho this week as a follow-up from my MRI. And, of course, I had to do a lot of restraint for the things I needed to say and wanted to say. The Radiologist indicated there was not a tear and that I had had tendonitis. Even my Sports Doc said the same thing, but this was just a bit much. This provider, a PA-C, indicated that I needed surgery. So, I had expressed that this was supposed to be fixed in 2014 when I had applied for LNI but because of the doctor that destroyed my claim, there will never be any possibility. I do not have the resources to have surgery, recovery, rehab, and take care of myself financially during that time. I would need to get a different job that I have now and to re-invent my life. This is not an easy task. I told him, as well, that there is little that can be done. He insisted that surgery and an injection could be helpful. No to surgery and I have had many injections and too many are counterproductive. Again, the steroid issue for someone who has gone through chemo and currently going through oral chemo. It is not indicated as a plausible treatment. Provider was not all that pleased and left it open for an injection. I seriously do not want to return back to this clinic and very well may not. 

Then, yesterday, I went back to Immediate Care and was seen by one of my favorite doctors. Dr. L. The conversation was open, honest and we have decided to determine I had expressed the matters with the ENT, one he had suggested and referred me to, and the ongoing issues. He listened and that matters incredibly for me. Yes, I was in tears because this burden of dysfunctional care has been on my heart for some time. He was not impressed with the manner of the ENT. As a cancer patient, my care is complex and I did tell him that. I need a provider who will not be afraid to collaborate with other providers: "patient presenting in clinic ... " and seeing about a case study. I believe that my ears are aggravated by the Aromitase Inhibitor and nothing else. There is nothing that can tell me otherwise. For the past six years, my ears have been constantly aggravated with no hopes. I expressed that there is nothing that can be done and that we need to just stay on top of the symptoms. I also expressed that I need to have a provider who will provide a plan of care so that I know what to do and how to collaborate with my medical team. This has not been done. I want things to change. I am a bold and brazen woman and will speak up regarding my health and care. I have done. 

This doctor-patient encounter put me to tears. My frustration is deep and it has been long lasting. I want changes and I am willing to continue for the changes. 

We press on! 

What to say

Welcome new month! August! Imagine that!

I have the usual multiple appointments coming up and with the COVID policies, it makes things just a bit exciting. I get to see two of my least favorite of them all. I would love to never see them ever again but that is just not the possibility. What to do?

A lot has been on my mind. I am not looking forward to these appointments, to say the least. I must be very good to keep my feelings and my emotions in line. I have these nagging thoughts and yet there are very few people to share this with for me to move forward with all of these appointments. I have been searching and looking for answers and they are very hard to find. Seems that I know what I want, but getting that is hard. If I had started out this whole journey out with good insurance, I think that I would have been treated much better. A lot of things have happened over the years and I have felt it. If I could just not go to these appointments, it would be great! BUT! that is not smart. I have to look at these appointments as an opportunity for me to learn more and realizing that it is just a short period in time, makes all that much easier for things to move forward.

As I have looked back at my appointments over the years, I have experienced good and bad. The bad is really just that and it is that which makes me feel very hesitant. I want better. I want to be treated with respect and kindness and compassion. I had an appointment with my GI, Dr. KK. After YEARS of having diarrhea that the previous GI, Dr. BK, did not ever address, I had told KK that I was taking psyllium husk for my bowels and I would like to continue it "if you do not mind". What a look on his face when I asked that. He SMILED and was eager for me to continue to take it. BUT, why was it that I had to do this on my own without the direction of my providers? This is the center of it all. Doing my healthcare with insufficient guidance from my providers.

So, I experienced some different breast pain. I had addressed this with my PCP and she referred me to the oncologist once again. Of course--if the oncologist would do their job. So, I had to think about what it was and did some research on bras! Yes, bras. Since I wear sports bras, that may come to an end quickly. The nerves that were severed from my lumpectomy and the scar tissue growing in my breast have made it uncomfortable. So, I have got to get new bras and stop wearing the sports bras. I am looking at purchasing new bras--one at a time. These things are expensive. And it is incredible that these matters are not discussed or addressed. "How is your breast pain" can be a question that can go a long way. It shows compassion and consideration that I am a valuable patient. Too many times I have felt as though I am human detritus and that makes me feel very awkward. I suppose that these "providers" wait for my questions to arise so they can address my concerns. Information offered in the beginning is called patient education. I know that my Naturopath has come to the doctor-patient table as appearing as above me. One appointment he called me "you people" and that has never sat with me well. I have recognized that there is a separate place in this world: the medical them and the medical us. Who is who?

I want to have things change and I am doing my best to have things change. I am studying and I will continue to study and to know things. I want better and for things to be better, I want to be treated better and not made to feel as though I am less than human. I know, historically, this has been the experience for many cancer patients and as times have changed, so has the stigma.

Let us all grow!

GI ... Jane

There always seems to be something that really upsets the apple cart. But, keeping moving along. I wonder at times at how some people manage to get into healthcare and stay there. Monday, I had my follow-up appointment with my GI, Dr. KK. It was good to see him; he looked thinner than what I had seen him last. I had asked if he was well and the LPN had said that he had been very busy because of the COVID issue. So, it is colonoscopy time and we have to determine what will be done to prepare for it. So, this was a storm. While I have had diarrhea for years and have done my best to keep it from worsening, I have had two GIs and neither one had made any suggestion about what to do to prevent it. So, I had decided to take psyllium husk. You would imagine that someone might have given me some direction. When I asked the doc about this, he smiled and apparently had been quite happy at this. So, humbly, I had indicated that I would like to remain on the product for as long as I can because it has done a great job and reversing the diarrhea. Oh, by the way, when you are being asked about the symptoms of COVID, never admit because if you have had this condition for YEARS, that is NOT NOT NOT COVID. I had asked the LPN why neither doc could have told me about this years ago? No answer but a quiet nod. This spoke volumes. At times, I feel that they view me as human detritus. So, managing through is what I am doing.

So, the colonoscopy is on the way. I have time to prepare because I will need to isolate myself when I am preparing. The procedure for the colonoscopy now is: five days prior to the exam, I must have a COVID test and then await the results. IF it is positive, then the exam is rescheduled and then I must wait for the test to come back clean. Mind you, and did you know that this is now becoming the standard for many clinics and hospitals. Prior to tests, surgeries, and etc, a COVID must be conducted. With clinics opening up and more hospitals taking patients for procedures, this adds to the raw data for the tests. If you are tested positive, the test can be done multiple times which in turn adds to the raw data appearing that the virus is spiking when indeed it has not.

So, more things are coming out from this. I am not looking forward to the test, but it is just a matter of nothing. So, I am telling myself. I am going to have this done at the hospital because I am a difficult start. I had an exam last year which left a huge bruise on my forearm. I showed the nurse this and so it was proven that I need to have better prep, which of course, it done at the hospital. So, my colonoscopy will be done there. This does not bother me a bit. I just do not want a COVID test with a cotton swab that is about 18 inches long. Oh, I need prayers!

As always, I will keep you posted.

Speaking up

Yesterday, I had a conversation with the direction at the clinic. I have had some lingering questions about many things and I need to continue to press forward. So, yes, I did speak up and asked about matters. Since my Oncologist had told me about their survivorship, I have had a change of heart regarding how I look to the provider for direction. Too, when Naturopath used profanity with me, it changed matters altogether. What to do? Do I just continue to ask questions or what do I do? Yesterday morning I told the director that I was going to keep studying and continue to port out my care elsewhere. I no longer get labs done at the clinic as well as go elsewhere for my CT. Many things have happened at this clinic and I just want to be free to be seen, ask questions and to continue seeking answers to things that the doctors will not explain. When I was told that I had slipped through the cracks, I decided then to make a difference in my health and to study.

How do I conduct myself in the doctor-patient encounter? If I am quiet and removed, then they will diagnose and move along. I do not want to have any more diagnoses in my chart. The providers certainly do not ask questions about what is going on but are very quick to add things to the chart. I do not like that. Not one bit because it takes a lot to discuss things with them. I have experienced this twice before, with one that discharged me because I confronted them. It is upsetting to me and I have no idea how to move forward to avoid this from happening again.

How do I proceed? Why proceed? I really have lost my thoughts of generosity towards these men. How can they do this? Why are they doing this? I want direction and I did not get it from the clinic manager. While we discussed many issues, a conversation of about 30 minutes was not long enough. I hope that I was concise enough to say what I wanted. I had just finished a 13 hour shift and I was tired. I had emailed him in April of this year and he had not responded. He did apologize for not responding. Well, what is the purpose of sending an email only for it to be ignored? He did say, however, that he did look into it and sounded to be in favor of what the nurse had responded in my emails. Interesting, he had the emails in front of him.

This is bothering me for certain. I want some direction and I am hoping to get it. I have my appointment with the Naturopath in August and I would like to know how to move forward without risking another diagnosis in my chart.

We shall see.

In a word

Sometimes, events in a day can be quite annoying. I recognize when I am annoyed and I am just that. Annoyed. It seems that this is discussed once again but it is discussed. COVID had created a situation and scenario that is more than what anyone had expected. The social distancing is met with medical distancing. I do not mind the distancing of the appointments as much as I do not like the distancing of communication. We must all communicate. So, what to do?

First of all, there was little communication from providers regarding what to expect. All of my appointments were canceled with the explanation that when things started to open up, there would be the opportunity to have appointments. Of course, this has been strange beyond all compare. During this time, communicating to the providers has been minimal. Talking to my oncology team has been nothing shy of impossible and quite distasteful, it has been quite upsetting. My oncology team is sparse to discuss anything. Labs completed, there is no discussion about what is going on. I really like communication and there is none. I am left to figuring things out for myself and while I have been doing that, there is no reason why a provider should not feel it necessary to communication to their patient. It is a good thing that I am studying my labs and staying informed. What is very sad is that I should have to.

So, appointment setting has been the fun thing. We have a certain protocol for appointment setting. This is a challenge. For a while, there was nothing heard from the providers and so getting in touch with them meant that it was a consistent waiting game. SO, the game is on. We wait. And wait. When the appointment is here, we have several choices. As the phases of the opening have been set, virtual appointments were available. In a word ... aggravating and quite saddening and disheartening. While many may have been able to communicate with their providers via telemedicine, I opted out. I opted out for two reasons: my phone freezes up and I have no privacy. Too, at the time of the lockdown, I did not have good cellular or WiFi reception that I could do a virtual visit. The options for me was limited. This made little difference. So, I have waited.

I have had several appointments since the re-opening. They are very interesting. In a word? I really have not just a word. Not all of my providers have appointments set. I have to be sure to get them updated and set. My PCP and I will meet in January, I have told these "people" that their fear over all of what is going on needs to be taken care of first. I simply have no confidence that they are able to care for me. With this level of fear, apparently, they can wait to care for me. ARGS! A lot of this is on my mind.

I have expressed that I will medically distance because of the issues. What is very frustrating and what remains, is that the lack of communication is quite upsetting. I love communication. One of my providers has canceled appointments a few times--my orthopaedist. At the point of the shutdown, my appointments were canceled. There was no communication about my test results and so when everything opened up again, an appointment was set. Then! of course, the appointment was canceled again because the provider needed to have that day off. So, I have let my referring provider know that if this happens again, I will not return to the provider. I will let it go. AND! my referring provider did not respond to that. Yes, he does know how I feel and has not made any effort to try and soothe the situation about what I feel or what is going on.

In a word ... I want some change. And so, I am working toward it. Change. I do not like how things have been and I would like a different direction. I have no idea how things are going to be with the upcoming appointments with my providers. I have one coming next week and will see how things go. I have my colonoscopy coming up and we shall see how things go with that. I am hoping change will come but I am afraid that things will not. SO, I must be prepared to accept things as dysfunctional as they are. I must be willing and I am not willing. I need to seek a different way.

In a word ... daunting!

Today is PT tomorrow is ...

Today is another appointment with PT. I have been seeing a podiatrist for my plantar faciitis. Yea, what fun. The first time that I had had any issues with that was right after chemo. Wow! My feet hurt quite a bit. Over the past year, I have had quite a bit of foot pain and going to the fitness center was really not helping at all. Being on my feet and the treadmill was not all that helpful. So, I had gone to my physiologist (this a doctor, that a doctor, here a doctor doctor) and he had recommended a brace. Oh, I tried that and it was just ridiculous. So, I asked for a referral and there ya go! Podiatry. What a thing. I have orthotics now and am at PT. Because of COVID, I have not been able to get to the fitness center as I would like and work out. Yea, working out at home is not ideal and it just does not happen. So, off to PT. I think the doctor just does not have a great inside view on things. As a cancer patient, I have seen some very interesting doctors--some that need to have their heads examined and others that should have never been allowed to be a doctor. I have had others that work poorly with patients and are best as researchers and teachers. We just get the best of somethings not ok.

So, off to PT today. I have several more weeks of PT and then ready for a new set of docs, I am sure. The clinics are opening up more but our Gov has been hesitant to open up the state all the way because there are "too many cases" of COVID. Amazing! He does not realize that things are going to be this way and it is called infection rate. Things will never be the same, I am afraid. My PCP's office is another that really has been frustrating to me as well.  All my appointments with providers were canceled at the beginning of the year and so getting back to the mainstream of appointments will take some time. This will be nice when things get back to something we recognize. 

I have been working a lot at the new job and a wee bit tired. 

Moving forward. Checking my list. Seeing who is naughty and nice.

So what am I doing now ...

So, what am I doing now? Well, for one, I am not giving up. I have had many additional experiences that have caused me to take a stance--a position of qualified care and promotion of health. One experience that has really changed me was when my Oncologist shared with me that he too was a "survivor". This was completely unexpected and not invited. I had had labs completed a couple of years ago and my regularly scheduled CT. At the most recent appointment, I had been told that a phone appointment from the doctor was important. So, labs and CT were completed, the phone appointment canceled from the doctor and then the events began. I had been emailing the nurse and then one day, she called and said, "please hold for the doctor". Well, I had not expected that and of course, out of respect, you do not hand up on the doctor. One thing that really upset me about that was how does anyone know what I might be doing at that moment? "Please hold for the doctor". That is something I really did not want to hear or expect to hear. So, in the conversation, the doctor used a set of logic that was not founded. He started to comment that the reason why he would like to discuss the labs is because ... then his voice lowered and he stated that "he too was a survivor". Well! I did not expect to hear that. It makes no difference in the professional relationship that the doctor to share his or her own cancer diagnosis. What cancer? I do not know. But, according to the American Cancer Society, the most common cancers with men are colon, lung and prostate. SO, these are the three top picks. Just the same, it is not appropriate to try and create a therapeutic alliance through the premise that one cancer patient can understand another cancer patient. He is the specialist and of course, he knows what the patient is going through. HE IS THE DOCTOR! Yes, I called the clinic and spoke to the clinic manager and asked about how to approach this. So, of course, what did he say? I had to talk to the doctor myself. Oh, great! So, I had to practice how to address this with the provider. Oh, I did not want to have this conversation and this was not something that I was looking forward to. SO, the day came with the provider and I had to address it carefully. And I mean CAREFULLY! I practiced I statements and no "you" statements. The decision to do this was not overnight. From the time that the Doctor decided to tell me this, he had made other comments about how he had experienced treatment. One appointment, I tried talking to him about my leg cramps. He piped up and started to say how he still go those too. I continued to discuss me but changed the subject very quickly. Another time, he was talking about how he had referred to an event that put him to the emergency room, vomiting. I thought that was humorous at the time, but did not realize it was related to he chemotherapy. So, I addressed it. When I had addressed it, I used I statements. "I trust you are taking care of yourself." "I trust that all is well." "I am not privy to your healthcare". "I would appreciate that we not discuss your health". This was met with him throwing his hands up in the air and said, "ok, ok!" So, how is a patient supposed to have confidence in her care provider? Not this patient. Not at all. So, I had decided to not communicate with the office as much. I emailed less and less and then asked for my labs to be done elsewhere. I had gotten the lab request in print, took it to another clinic and stayed informed that way. The Doctor has not responded back to the labs as he did when they were done in his clinic. On my last CT, I had the test done out of clinic. I know that he can see that I am not pleased with the clinic and I really have put up my protest. So, this last appointment, he had offered a six month follow-up. I asked for eight months and he agreed. So, I will see him only once a year instead of multiple times a year. I do not send any email requests unless if it is important. With COVID now, many things have changed and so seeing our providers is done through portals, webcams or over the phone. As far as I am concerned, I would love to never see this man again, but it just is not happening.

I have continued to study to take care of myself. I have continued to post in my Breast Cancer Warriors group and continue to press onward for others as well as myself. Now? I want more. When I was told that I had slipped through the cracks, I said that I wanted to do more to prevent this from happening. I have studied long and hard and continue to press forward with all things. Today? I am studying to take the RNs exam. I want to do more and to make a change in Administration and how providers conduct themselves. Pushing forward with my RN may help me with that.

I want change. Change for my patients and change for myself. I am not excited about the events that have happened in the past years and I want this to be a motivator above all things!

Please continue to be with me while I work on this next saga of how I am caring for myself and others.

Seeking. Pressing. Studying.

Why we continue

I am sorry that I have not been getting to my blogs. There has been quite a bit that has happened over the last three years that I have not been able to get to my blogs.

My last entry left off where my provider had received the assessment regarding my diagnosis of PTSD. From that point, my provider had discharged me from the clinic and I was left to look for a new provider. I was told that doctors do not like being corrected. Well, it is safe to say that patients do not like being maldiagnosed/dysdiagnosed/misdiagnosed. When the provider does not do their due diligence on matters, it can create great harm. I remember the email that I had received regarding this assessment and I was very sure to let the provider know that I was not happy that I was seeing so many specialists. When the provider was wondering why I refused the first refusal to go to a Psychiatrist, I reminded him that it was not my intent to be seen by yet another specialist. When I had shared about my chemo nightmares, he turned, with hands lifted in the air, expressed loudly, "Oh my god, what you need is a psychiatrist!" So, what part of that is welcoming and accepting of a referral? what part of that makes a patient feel they are valued and listened to?

So, I had called my insurance company and told them what had happened. I had gotten another provider with a different healthcare system. This provider was very good. We had discussed the PTSD diagnosis where he commented that there was nothing wrong with being diagnosed with PTSD. I agreed. There is nothing wrong with the diagnosis and it is an ample way to explain behavior. However, this diagnosis also says to other providers the psychiatric need, which may not be amply understood or properly cared for. There is a bias and that bias will be experienced by providers who do not understand or know how to treat. I did express that the diagnosis was in error and that I was not going to be improperly diagnosed for more incomplete care or direction. I have experienced so many disastrous things.

Currently, there are a lot of bad medical appointments that have accumulated to my attitude. I want things to change and I want to be part of the change.

Forgive me for not getting my blog completed these last three years. I am here to keep going.

Moving on. Pressing on. Being more.