Anxiety only comes when there are anxious moments

This is something I know for certain--anxiety. So, there are things that really bother me and get my anxiety stirred. Certainly cancer care and treatment can cause a lot of troubles and anxiety is one of them. I know for certain that I don't like bad appointments, multiple medical procedures, bad advice, and low blood sugars.

One huge anxiety that I have is "slipping through the cracks". This is simply the worst experience ever. In my experience, so far, there have been many professionals that just do not understand what to do. With the one doctor for my LNI, this was a horrendous injustice. Even this doctor's MAs had no understanding about what the laws said about the situation. This is something that does create anxiety, and did, because these young adults with minimal education and understanding are making medical decisions and providing medical opinions when they have no expertise, education or understanding.

I hate it when the doc will say, "I would like you to get some ...". This especially is a great piece of anxiety for me because my finances are very tight and I do not always have the extra money to purchase a higher quality supplement. For the most part, these supplements are very costly and to purchase them every/other month is quite demanding. I simply do not have the extra cash to do that. But, for my health, this is what I need to do.

Another frustration that I have that causes anxiety is when I have procedures that requires me to have IVs. I have regularly scheduled CTs. With those comes an IV for the contrast. If the tech cannot get a good enough draw, then they have to go for another one and continue until they either get one or I say enough is enough. This can result in many bruises that I have to cover up from work and so that no one will know what is going on. (BTW: that causes a lot of anxiety as well. I do not want anyone to know what is going on with me.). I simply cannot understand why someone would think that it is ok to think it wrong to be upset about what is going on. We are not supposed to be enjoying it. The last CT that I had was such an easy IV. I had to drink an enormous amount of water, plus double up on my K and Na to get the proper blood volume. I tell you, I had to drink about 72 fluid oz of water for the day. It was just miserable.

I really get bothered about bad advice. So, with the last doc's appointment with my PCP, he told me that he wanted me to get off all of my meds, except my cancer med, to determine what was causing my stomach pain and then to introduce them one at a time. Well, first of all, I knew why I was having stomach pains. This does not require a rocket scientist to figure out. If only the docs really wanted to know then they would be asking the right questions. They do not even figure things out. I had to write a letter to one of them about it. I simply do not have enough money to pay for supplements, food, bills and everything else. So, what goes to the way-side? Yes, food. I have not had enough gas money to get to the food bank and I am certainly not going to ask anyone for food money that I cannot pay back. I am not going to ask for food-stamps because I am paying for my car and the final few months of my lawyer. So, when they are all paid off, then I will be working to pay off the next few bills. Gotta love it! Right?!?! So, with this primary not asking me the right questions, then he would naturally assume that the medication that I am taking would be causing a lot of difficulty. He had also commented on "why the anxiety about all of these pills". Well, stop and think about it. I need to have these supplements for my health and for pain management. This doctor has no understanding about what he had said. Then again, he was very out of sorts when he had seen me as well. This was the week off the new stomach med and that both his RN and MA did not return important phone calls to me. Seriously, what are the odds that both of them did not contact me regarding a medication allergy. This is quite frustrating to me. I am not requiring a huge conversation; rather, simple acknowledgement that they will contact the provider and they got my message. Simple enough. But, that did not happen. With the amount of great discomfort that I have had, having the comfort of knowing that I was heard means a great amount. Anxiety? Yes. Pain has its own amount of anxiety.

I hate having low blood sugars. This creates a lot of anxiety in itself. It is part of the symptoms. But, do others recognize it for what it is worth? No. I wish that the providers would understand that I do not always eat on-time or regularly. I simply do not have the money for it. But, it is a catch-22. I need to eat for health. I take supplements that requires me to take them on a full stomach. Since I do not eat just anything, I will not eat something that will potentially make me sick. I do not eat soy products and so many types of foods are off my diet list. This can be quite frustrating because if I would like to eat a doughnut, that means that I would be eating something that can make me sicker than a dog. Soy is in most baked goods and it is used too widely.

I am learning. I must be very good at what I do. But, even more so, I must continue in the same way that I have been. I am eager to get beyond some medical providers.

Looking. Seeking. Hunting.

Sometimes there really is nothing to say but breathe

Today, my heart is really hurting. I feel at loss as to what to say. For the most part, I know that I am very upset and angry and am working carefully to not break down to tears. Honestly, I seriously am concerned about who I would break down with. This cancer trail has left me quite alone with very little friends to rest my head. As you already know, I have been working on trying to figure out all the meds and the docs. Several weekends ago, I had a very difficult time with a reaction and from that point in a lot of pain. I had called the Triage nurse and left messages. I had left messages with my MA as well. So, no responses back and I had brought this up with my Doc as well as the office. Today, of all days, my inquiries with the doc about my glucose strips and I get an email from the nurse that did not feel that it was important to give me a call back when I was in a lot of pain and discomfort. When I had seen the email, I was immediately inflamed. I just have no words to say that would adequately express how I feel. I am very upset and very angry. Having both my MA and RN not return my calls has been very hurtful. Not that they are my friends, because that is not what this is about. They are not friends; developing a strong therapeutic alliance with my medical team is very important. When they cannot fulfill a simple task that is necessary for my care, I get very worried and concerned. I am concerned that my care is too much for them and they are not able to take care of me. My greatest worry! I have had a lot of people leave because of this cancer. For them, there is a worry and concern that my dying will be very ugly and they would not be able to handle it. Some people just do not understand the loneliness behind this disease--this invasion.

When I am able to, I will certainly be asking my office personnel if my care is too much for them. Today, when I spoke with one of the office personnel, I did ask. Is my care too much for them? Certainly, I was told that it was something best answered by my doc. Certainly, I will ask and I am not afraid to hear the answer. When I told my Oncologist, she said that she hoped that the Primary would be a bit more "transparent". Yes, honesty goes a long, long way.

I know that my feelings run really deep. It would not matter if it was this doctor or another. I want a strong therapeutic alliance that I can trust and know that if something were to happen to me, I would be in good hands. At this point, I am not sure.

Sometimes there really is nothing to say but breathe.

Difficulties upon difficulties

First of all, my most recent appointment this week with Oncology was fantastic! I continue to be in remission and, for the most part, there is no detectable evidence of the cancer! Wooohoo! 

But, my stomach issues persist. For the past several weeks, my stomach has been very bad. So, like a good patient, I reported this to my doctor. And, like a good doctor, he prescribes an increased dosage of a medication that the insurance gives a difficult time in authorizing. So, from that point, another medication suggestion, over the counter (OTC), then another prescription, and then? Of course, a reaction. From that point, having to get into communication with the doctor's office has been like trying to put an elephant through the eye of the needle. Sure the reference is a camel, but in this instance? An elephant. For nearly three weeks, the difficulties persisted. I was seen in my primary's office yesterday and we discussed this. What is so profoundly frustrating is that no one had called me back. Not that I am asking for something unreasonable; but, I am asking for some simple recognition that something has gone wrong. When I related these events to my primary, there were some very interesting comments, body language and efforts to compensate for the lack of services. Laughter. Yes, laughter is a great medication! It is medicine that we need on a constant basis. But, it is also a sign of stress or when there is little understanding about how to handle a situation. I have seen this with my doctor on multiple occasions. I would really like to know one thing: Is my medical team able to handle my care? Will I need to look for a more qualified office? Come the beginning of the week, I will be taking some time to discuss matters with the Office Manager and ask some very blunt question. I would like answers. I will get them.

Now, my upcoming projects are really set in front of me. While my cancer is in remission, I have been told that I have shin splints So, my next project is to figure out what to do for them. My doctor is going to refer me for imagery and from there what to do. This will definitely impact my jobs and with as much walking as I do, I need to be doing some other exercises. So, I was thinking, should I do more exercises in bed to compensate for this and to be off my feet? One thing for certain, I am going to get down to the bottom of things and to be certain to get my exercises in as well. I am really not thrilled with what I see in my medical team with this one and I need to be able to feel confident that it will be ok.

Hoping. Wishing Caring. 

Bring on the weekend

Happy Weekend!
Well, there is a whole lot to do over the weekend and it is always here. I look back at what I have already done and yet there is still so much that needs to be done. Always. Always. I can say, that it being the end of the month, there is little finances left until payday. I am very careful about how I am going to spend my day as well as the remainder of the week.

One thing that I am frustrated about is how much pain I am in when I am working. At home, I have to slow down and pay attention. At work? I do not have to slow down, but keep a steady pace. I am on my feet and I can keep moving. Here? I have noticed that when I walk around the house, barefoot, my pain level goes up. Incredibly. I need to exercise as well, and when I exercise, I have more muscle spasms. It is a catch-22. I am needing to stay out of pain but I need to exercise to help with pain management. Amazing how that works. My numbers are very good: Potassium (K), Magnesium (Mg), Sodium (Na) are all good. While these are very important to me, I have argued with the Docs about my K fluctuating. There are some very difficult words I have had with people who have not listened to me about my K. But, that is ok. I suppose that is what they are supposed to do.

My hair is thinning again. My scalp has been hurting like it is on fire. I have told the docs this and they do not seem to be answering me about things. I truly wonder, How much stress are they going through that prevents them from being completely efficient in their job? Then again, we also have Medical Assistants (MA) that are the primary help to the docs and they themselves are just lowly person's on the totem pole. I have seen these girls behave very poorly and they are expected to be helping us with our medical life? Sometimes being a patient really sucks.

I am physically and emotionally tired. I can feel it very much so. I have roommates now and that has made a huge difference. One of my roommates has the potential to be very rude and because I am on a very limited budget, I must be very careful about how I respond.

My day. I know that I cannot sit and dawdle. I still must get things done. I must.

Thinking. Knowing. Not dawdling.

I have been thinking ...

Well, I have been thinking ... I am always reflecting upon daily events and what I am to do next. So, this past week, I have been thinking about all of my doctor's appointments. There is always so much to do and to keep things organized is so very important. I have a new filing tub for my papers and will be working on organizing one tub specifically for my cancer material. There are a lot of things to organize in them and how to place things in order is what I will be working on. Lab work. Post visit summaries. Notes, notes, notes. Where to begin.

I have been thinking. My thoughts have been on my family and what they are doing. I have not heard from anyone: no emails, phone calls, letters, texts. I think about that time to time. I try not to let that dominate my thoughts; it would be quite depressing if I did. I hate having to be the one that is always making that extra step to keep everyone informed. I hate always having to talk about my thoughts and feelings to the family when they really do not want to know.

On the positive side: I know that times can be quite frustrating and making sure that I have "On the Positive Note" always ready. I have been getting organized. For me, this is very important. While my bedroom also doubles for my "office", it can get quite busy in here. I have having my office in my bedroom because when I want to sleep, I think about the chores that I need to be getting done. For the most part, I try very carefully to shut my mind down from all the things that I want to get done. I joke around and say that life after chemo is not the same--I am more OCD than I was before. Yea, I said it. So, I have to allow my thoughts to be honest and succinct.

I know that one thing that I have learned over the past several years is to be honest about things with myself and others. At the beginning of being re-diagnosed, I had a hard time learning about what this cancer was all about. I had to quickly get over it because learning about this disease means that I must be ready to help myself when others are not available to help me out. I have learned to really just grapple with honesty to the fullest. So, when I go into the doctors' offices, I must be willing to describe every bit of symptom and side effect. It is NOT easy; I have to stay on top of my terminology and understand what they are talking about.

One thing that I have been wondering about is just how much I do not know about what is going on with me. Yes, while I must know what is, I know what is not. I know that I am not an RN, or MD, or DO, or ND, or ARNP. There are things that I must learn to ask. I also have to be easy on myself when I do not get something correct. So, I have the grace with some. But I have been at this now for some time and they, meaning docs and nurses, have seen me in some very difficult days. One difficulty that I have is to always be calm despite the amount of stress the procedures and tests may create. I must be very aware of how vocal I can be about what is going on. Sometimes, I can be rude and I must be careful about not getting rude. Certainly, while treating cancer patients, there is a serious need for strong control. But, when you are around death all the time, it can make things very trying. So, I must be very careful about what I say. I have no excuse to be rude or intentionally difficult.

I have been thinking ...

Looking out. Looking in. Looking forward.

My medical team

Well, I must say that I have never had so many doctors/nurses/ARNPs, etc in my entire life. In the past six (6) years, I have been seen by more doctors than I would love to even know. I really do not know quite how to address my utter feelings about all of this. While they know that we see a lot of medical persons, there is a wonder how they address that internally. What are their personal feelings about having to be seen by many other doctors who are less qualified than they, or even perhaps they are less qualified by these others?

First of all, let me tell you just who these persons have been. Primary, oncology, naturopathy, urology, OB/GYN, cardiology, urogynecology, orthopedics, physical therapy, endocrinology, neurology, dermatology, oncology social worker, ENT, audiology, and a host of RNs. For the most part, I have not seen them all at the same time. Some of these men and women I have been referred to because of just diagnostics. For the most part, many of these are stretched out far and wide. Some of them I do not see anymore and have refused to see them. I have been examined by more male doctors, internally, than I have had sexual relations with. This is just more frustrating than what I can honestly say. I hate the prospect of having to undress from the waste down and have multiple hands and instruments inserted inside of me. I had had one procedure that was just humiliating and horrible--urodynamics. While some may say that it is a wonderful way of determining how the bladder performs, I say that it is a vile procedure. Because of chemo, I am not thrilled to say that I have an overactive bladder. I have had many bladder infections and have had bladder spasms that have been so severe that I could be in utter pain and tears. Because of this, I had been referred to a doctor who specialized in urinary/gynecology--urogynecology. I had never seen this doctor before and then having a strange man examine me for the first time was not all that wonderful. I have not had sexual relations with a man in a very long time and having all these men examine me has been hard to deal with. I have not expressed this much because it is part of everything. Certainly, if I make a comment about it? I would be referred to another doc. Like I want that. No. I don't. These doctors cannot accept that fact that these exams are very difficult. I say nothing and I do not express my discomfort or malcontent. It would not matter if I did.

For the longest time, I had been trying to figure out how to maneuver myself with these doctors. If I do not want to be diagnosed with something different, I am careful to not add a whole lot of things. Oh, the frustration. I could write a novel on all of this. One thing that has aggravated me is when I am having a difficult day and at that point, I am working on low blood sugars and some anxiety that is associated with it. I must say, I do get very angry about it. I get very upset at all of the diagnostic codes that I see on my after visit summaries. It looks like I am a bloomin' basket case. When I look at all that I am dealing with, it really is quite a bit. On my primary's summary, I have about a page of things that are ongoing. So, I do my best to be very clear and concise in all of my discussions with my primary. He, however, is my biggest culprit. He likes to refer me out to anyone for any sort of procedure. I remember telling him about my chemo dreams and he danced around and said, "Oh my god, you need a psychiatrist!" Well, I told him that if he sent me to one, I would not go. One important reason was that they were "chemo" dreams and not ordinary dreams. That did not make me feel very welcomed or happy when he had done that. Since then, I have been working to diligently "train" him just as much as the other docs. Yes, they need training.

Over the past two years, I have been staying on top of my medical records and all. And let me tell you just how much fun this has not been. It has been exhausting and incredibly time consuming. Oh, to talk about that one! The medical records and their endless portals. There are more doctors than what I care to have and the portals. Keeping my files and my records in order has been a great drain on me. I sure wish that I had someone to help me with all of that. It is a full-time job just to keep an eye on my medical stuff.

And then the medical staff. Oh, let me tell you! A lot of these young ladies are very YOUNG! I really do not like to have these young women take the phone lines and just bee-bop their ways into my medical records. And then, too, reminding myself that when I call them, I must be very polite and express myself clearly and convey gratitude. All I want to do is to teach them some lessons on things. But, certainly, I cannot. I remember one time I was being seen by my urologist and had left a sample. When he had asked if I had left a sample, he was very upset that they had not run it for him. Well, I had to express that these young ladies needed to be taught as well. I certainly hope that they do.

On a great note, though. I have been told that I am very "compliant" (of course) and am in good tune with my body. I was told by my urologist that he wished many of his patients were like that.

I know that many things have been getting to me. How to address them has been one that takes great finesse. One thing, for certain, is that I am looking to get more education and experience. I look forward to doing it volunteer as well as paid. There are times that I just look at everything and feel so very inadequate. I am the only person taking care of me and at this point, I need to be very organized and very prepared for all of this.

Well, it is off to bed and la-la land. I look forward to more conversation. I will be adding more and more along the way and through the upcoming days. I am sorry that I have not had a chance to add anymore conversation over the last couple of years.

Wish me luck in my endeavors to keeping in step with the doctor's appointments.

Looking on. Looking forward. Needing translation.

Back in the seat again

It has been a long couple of years and I have not realized just how long it has been. I am now back in remission and things are looking very good; however, there are always a lot of things to do and to be aware of. Since my last posting, I have left CCO and have gone out of county to go to church. I have chosen not to share my cancer journey with anyone else because of the events of CCO.

But, let me tell you what has been going on. It has been nearly two years since my re-diagnosis and I have been taking the anti-cancer meds, or oral chemo, and it has been hitting me hard, but I have been doing very well on it. The first med was a weird one. I was at physical therapy (PT) and collapsed. Oh, boy. I had to take the ambulance in and the ER docs had no idea what had happened. So, funny, the doc said that if I were coming back, they would be keeping me. Oh! Well, promises promises! So, from that point onward, my med was changed and all has been good. The side effects are minimal and the pain of the meds manageable. Yea, sometimes the cancer does not kill us, but the side effects do. So, I have a huge amount of supplements that I take and very little Rx. I am glad about that. I have developed a great insensitivity to many meds and it has been a long, long couple of years of finding them. No matter the med, it seems to really hit me hard. So ...

During this time, I have shared this with my girl. She did not handle it well and she has been in emotional crisis for a very long time. She unfriended me on Facebook--yes, that is a sad event when your child does not want to see your posts or information. So, she moved to another state, Arizona, and kept on asking for money. Ok. I have none. That was very hard. So, she moved back "home", and after that things just worsened. She brought her boyfriend with her, which ended up in a domestic violence situation. She continued to smoke and was in a horrible way. She has been having difficulties with emotional imbalances and has not communicated with me for some time.

Cancer has a way of not just destroying the body, but the social networks around. I no longer attend CCO because of just that. What I had been profoundly frustrated at was how I was told and treated as though I was looking for some time of free product or something or other. While it is very important to always help those who are ill in the church and to provide emotional, physical and other supportive services, it should not be made to feel as though it is a burden on someone else. I was keeping to myself more and more and was very careful about what I was going to be doing--this is wrong. We should never be making a reason as to why we needed or how to get a need met. This should be something that automatically part of any church relationship. However, I am learning more and more that it is the nature to the topic: cancer.

So, I have seen many doctors. Of course, because my cancer had spread to my lung, I get a quarterly CT. This is such a drag. Every three months, I get a CT which we monitor the growth and size(s) of my tumors--which they have all gone away. Some cancers can be cured. But, the most important thing is to remember that there is hope. The meds that I take have given me hope.

So, 28 May 2015, I was told that I was in complete remission and that the tumors had all gone. So, because of my experience, I have started a Facebook group called Breast Cancer Warriors. I am very proud of that because I can put my experience, education and my cancer journey to good use. I hope to do more and hope that as things move along more, I will do more.

I have also become a volunteer with the American Cancer Society. I have been accepted in May of this year and am in the process of trying to learn more and make my voice heard. I want to advocate and educate!

Rock on my lovelies! I will be returning for more updates. Sorry I have been gone so long.