Silly to say, but "knock, knock--who'se there"? Well, it is me. I am here. I am here at the door looking at so much going on all around me. There is so much going on that I ust do not have any more desire to come out to play. I have been fighting this battle for so long--the no insurance battle. Because of no insurance, I cannot be seen in my doc's office for anything. I cannot go to see my oncologist; I cannot go see my regular doc's for anything. How is a person supposed to be able to complete their treatment if there is no insurance? We are looking at Obama-care and the mandatory insurance laws. How is that going to make things all that much better? Do we pay our rent first or do we pay the health insurance first in fear that we might be penalized for not having insurance? Well, the answer is we must take care of housing costs first. I have no insurance. This has happened to me too many times. I have not had health insurance for so long. This interferes with my ability to have care and coverage. I get worried.
There is always so much paperwork to be completed. I have to call so many agencies for coverage because there are so many out in the great US that do not have coverage. Then the coverage that is provided by the state is so minimal and is not as widely accepted. There are so many docs out there that do not accept the health insurance and substandard care is received. How is it supposed to be when "health insurance" is meant to establish quality of care that care is lorded over you if you do not have the right kind? And of course, you cannot receive care of any kind without health insurance. This has been such a problem for me. For so many years, I have not been able to carry health insurance. And now, when it is so important for me to have it, I cannot afford it. The ones who have insurance are the lucky ones. For those who have insurance are the ones that will live the better quality of life? There is no health insurance for [...]. No matter how much that I work, it is not possible to get it. And now, when I need to have important health screens, I must have to complete a lot of paperwork for charity and for other opportunities through organizations--The American Cancer Association. I have to submit my claims to them. I am thankful for them because they will allow me to get that coverage that I need.
Too, I have finally found somone to chat with regarding my breast cancer and I was to meet with her. I had a client emergency and needed to cancel this appointment. This was canceled. However, she has not called me back again. I am so close and yet so far. I am so close to getting some support and am getting it now. Support for my kiddo through the Probation office. I am getting some work done; but, so much more to go. I am thankful. I am glad that some changes are coming and that things are on the way. It has nearly taken two years since my diagnosis for things to get into place. It has taken nearly two years since I had found my lump. I cannot believe it!!! It does not seem that long ago but it has. It has been a long, long haul with everyone and there has been so much going on. I just cannot believe it. I canot believe that so much has happend. It does not seem that two years has gone by. When I can see five years gone, it will be awesome. But, I know that I must always have screening and testing all the rest of my life. I know that this will be gone for good; but, the necessity of having checks and screening is so very important. This will change the rest of my life.
Changing. Pressing. Pushing.
Tuesday, March 6, 2012
Thursday, February 23, 2012
So many times, and again.
There have been so many times that I have just said, "I wish." Perhaps that is an understatement. Perhaps, I should say, "I hope." This has been a very long and difficult walk this past nearly two years now. I cannot believe that from the time of my diagnosis, it has been nearly two years. Come June of this year, I will have had to worry about cancer for two years. I am amazed at how the time has gone by. When I look at the personal ordeal that this has been, I cannot see the passage of time. But, the time has gone. It did not lapse to something else. I am fixated! So much has happned during this time and it has been so ever present in my life. Yes, the chemo and the radiation are complete, but what it has left me in is another story unto itself. This seems so much like the continuing saga--The Chronicles of Caren. Yea, I have said it once before and now, I am saying it again.
So, I have been told that my health insurance throught the state does not exist anymore. I make too much money. So, I was given paperwork for Medical Disability. This is not what I was asking for. Yes, I am working. Yes, I am able to work. No, I do not want to quit working. But, I have no health insurance and so, I have to do something to get it. I am not financially able to afford my own health insurance and so, I must figure something out. No health insurance. How comforting!!! I think that every cancer patient should have health insurance. But then again, OBAMA-care would have it that all of us have to pay for very expensive health care without being able to afford anything else. Insurance is not cheap. Then of course, your co-pays and anything else that is to be attached to it would be the same. I am just not sure. So, with this, the long-lasting side-effects are what I need to have constant care for. Too, continuing treatments of hormones or other stuff is the frustrating thing. How do we keep the beast of cancer back without being seen on a regular basis and have those wonderful bloodtests? Hmmm. Yes, prayer to keep things going. And to use wisdom about how I live my life, eat and exercise. Yes, all of that is very important. All very important. Of course, all very important. I have been concerned and worried; but, I have been very careful not to voice it very much. So, now you know. I am very concerned and worried that my care is interrupted. I make too much money; but, I do not make enough money for health insurance payments. Both my jobs together do not give me enough to earn health insurance or to be able to get to the doc and pay for him/her. Quite frustrating. No health insurance. And this paperwork? I cannot complete it. The questions are asking me as to why I cannot work. When was the last time that I worked and etc. This is not right.
Then, to boot, y kiddo has been doing all kinds of things. There is a warrant out for her arrest for the things that she has been doing. She is on criminal probation and she refuses to comply. I cannot help but to wonder about my breast cancer. No, I do not have cancer now, but what stops me from having the cancer again? Not so sure. But, I know one thing, this is well enough not over. I must have the strength to continue and to be able to endure more to get to the end of the journey and trail. No, I am not saying that it is the end of my life. I am saying for the end of the obligations. I am hoping that I will be able to have health insurance and I must find out what I can do to get it. I am very certain that I must be even far more careful and conscientious with my finances to get that health insurance. OH boy!
What to do; what to say; how to do it; how to say it. I am not disabled! I have to figure some things out.
Pushing on. Pressing in. Looking beyond.
So, I have been told that my health insurance throught the state does not exist anymore. I make too much money. So, I was given paperwork for Medical Disability. This is not what I was asking for. Yes, I am working. Yes, I am able to work. No, I do not want to quit working. But, I have no health insurance and so, I have to do something to get it. I am not financially able to afford my own health insurance and so, I must figure something out. No health insurance. How comforting!!! I think that every cancer patient should have health insurance. But then again, OBAMA-care would have it that all of us have to pay for very expensive health care without being able to afford anything else. Insurance is not cheap. Then of course, your co-pays and anything else that is to be attached to it would be the same. I am just not sure. So, with this, the long-lasting side-effects are what I need to have constant care for. Too, continuing treatments of hormones or other stuff is the frustrating thing. How do we keep the beast of cancer back without being seen on a regular basis and have those wonderful bloodtests? Hmmm. Yes, prayer to keep things going. And to use wisdom about how I live my life, eat and exercise. Yes, all of that is very important. All very important. Of course, all very important. I have been concerned and worried; but, I have been very careful not to voice it very much. So, now you know. I am very concerned and worried that my care is interrupted. I make too much money; but, I do not make enough money for health insurance payments. Both my jobs together do not give me enough to earn health insurance or to be able to get to the doc and pay for him/her. Quite frustrating. No health insurance. And this paperwork? I cannot complete it. The questions are asking me as to why I cannot work. When was the last time that I worked and etc. This is not right.
Then, to boot, y kiddo has been doing all kinds of things. There is a warrant out for her arrest for the things that she has been doing. She is on criminal probation and she refuses to comply. I cannot help but to wonder about my breast cancer. No, I do not have cancer now, but what stops me from having the cancer again? Not so sure. But, I know one thing, this is well enough not over. I must have the strength to continue and to be able to endure more to get to the end of the journey and trail. No, I am not saying that it is the end of my life. I am saying for the end of the obligations. I am hoping that I will be able to have health insurance and I must find out what I can do to get it. I am very certain that I must be even far more careful and conscientious with my finances to get that health insurance. OH boy!
What to do; what to say; how to do it; how to say it. I am not disabled! I have to figure some things out.
Pushing on. Pressing in. Looking beyond.
Thursday, February 9, 2012
What goes up, must come down
For the most part, things are never dull. I have to say that no matter what is going on in my home, it is never dull. Even my cats are never dull. But, here of late, I have to say that I have had my share of things that I care not to have. I am tired and full of thought. Today, my kiddo was put into juvie. Yes, the next best thing with the Chronicles of Caren. For the past several months, there have been so many events that have been so stressful. Sure, the cancer diagnosis was enough, but this is more than just that. It has been so predominant in my life and I am frustrated and feel helpless that things cannot change. It has is not nearly a year since my last chemo and now, things are even more crazier than what they have been. Where to begin?
Where to begin? Well, to begin with, this journey seems to be getting a whole lot more difficult and more stresful than what I would have imagined. I would not have guessed that my child would be in more trouble and danger than expected. I fight this all the time. I have said this before. But, the evidence seems to be popping up all over. My kiddo has been involved with things that I have not approvd. Yes, I have guessed that she was capable of such things; but, a parent never wants to invite things more than what they are. However, this past year has been one thing that I have never expected to see. My girl has been through a lot as well as I. It is hard to think of myself at this time when I think of all the things that she has been through that should not have been. To have a child so young to be worrying about having a parent with a serious life changing illness. I have to address the issues of my own mortality; but, she as a teen must face the same thing--my mortality and the aspect of being left alone in a world that is so caustic and not understood. Now, things are what they are. She has been doing so many things and her attitude has been so difficult to address and to manage. Now, there is a possible diagnosis of ADD and more. There is the possibility of dual diagnosis and that prospect is not very good here. I am tired of all of this.
I know that many things have gotten to me, but this is one of the most. Yes, I have been diffcult for many because they have not understood. But, this is much to much. I am tired. So, because of all that has been going on, I have not been able to make all of my medical appointments. This aggravates me to no end. On Sunday, I was in the ER because of my migraines. When I express to the docs what has been going on, they do not look at me favorably. Yes, I know that I must continue to take care of myself for the sake of myself as well as my child. But, at times that is not all that easy. When I am utterly exhausted from the work day, what am I to do? I cannot quit my jobs; I cannot quite take some time off. I am looking forward to taking some time off. I am looking forwad to having some time to rest and to get reacqainted with my bed and the apartment. But, silly me. The obligations that are coming are just a little more than what I had initially anticipated. When I had called the police on my child, I never anticipated that the obligation would be this intense. I knew that it would get to be a battle; but, I did not anticipate all of this. I had to take a stand and to be sure that I would put a stop to all of what was going on. For some reason, some have never thought that I would be going through all of this. I have had no choice but to take a stand on what I have believed and to take a stand and be an advocate for my child.
I know that I must get over some emotional issues, but I am having the most difficult time with it. I know that I must acknowledge that some things will never change; but, I am such a dead-head about it. I know that the help from my church is just not there. I was told--"you have pushed so many away". I have heard this twice. So, this is the aggravation that I must deal with. "Pushed so many people away". hmmmm. This is an issue that no one can understand except the persons who are in the position of understanding--professionals. I have had to endure much during this past nearly couple of years. How can anyone understand? Am I supposed to just acknowledge everyone and have everyone come through my home like bulls in a china shop? First of all, at the diagnosis, they were not there. During the treatments, they were not there. At the end of the treatments, "wow, that was long wasn't it". So, my attitude is what? People say that they understand, but they have not. Simply, they have not. So, now that I have accepted the fact that they are not there, what do I do now? I have been attending another church. This is a small church, indeed. I am not keen on the idea of another church, but I know that the support that I have not received at the home church is not good. "Have pushed people away". This is something that rings in my ears very much. I will not be able to put that behind me for a bit; I am praying that I can get that done. I am believing that I will be able to understand and to let that go. I want to talk to many, but that would be of little good. They did not udnerstand when I was going through chemo, why would they understand now while I am experiencing the most difficult of my parental abilities now. No, there are so many issues going on. There are so many events that have created difficulties right now. These events are not going to go away any time soon. So, what next? What next? I suppose the assumption that we all have something that we should be doing for another person is always there. There is the assumption that there is always some else available to help out. But the reality of it all is that there is no one else there to help out. I would have loved and still would love to have someone come over and discuss things wtih me. That would be great. I would love for someone to come over and help out with a thing or two. But, that does not happen. So, I must lean upon the LORD for that help. That, of course, is my first point of it all. I must always look to HIM for all things. But, at this point in time, I really have never really had a time where the pressures of life are not so demanding. I have never really had a time in my life where things are just easy going. There is always something going on to be my challenge. This is the next context of my inquiry--why is it that these events never stop coming? Am I a glutton for punishement?
I think of so much that has and still continues to go on. I think about my health care. It has been very frustrating to have to experience this. But, even more so, why am I wasting my time with things that should not be?! Am I wasting my time seeking help where help is not going to be? It is not enough to be just praying. Praying allows us to understand where there is difficulty. Acting upon the WORD is the next thing. We are not to be just hearers of the WORD, but doers of the WORD. When are we going to be figuring that out? Pushing people away. Hmmmmm. This is quite the aggravation.
I am working on many upcoming things and event. But, I am working on overcoming. Keep posted. I do not want to sound enigmatic. I simply want to say that what I have experienced has been nothing shy of stupid. Just STUPID!!!
Looking on. Pressing in. Working diligently.
Where to begin? Well, to begin with, this journey seems to be getting a whole lot more difficult and more stresful than what I would have imagined. I would not have guessed that my child would be in more trouble and danger than expected. I fight this all the time. I have said this before. But, the evidence seems to be popping up all over. My kiddo has been involved with things that I have not approvd. Yes, I have guessed that she was capable of such things; but, a parent never wants to invite things more than what they are. However, this past year has been one thing that I have never expected to see. My girl has been through a lot as well as I. It is hard to think of myself at this time when I think of all the things that she has been through that should not have been. To have a child so young to be worrying about having a parent with a serious life changing illness. I have to address the issues of my own mortality; but, she as a teen must face the same thing--my mortality and the aspect of being left alone in a world that is so caustic and not understood. Now, things are what they are. She has been doing so many things and her attitude has been so difficult to address and to manage. Now, there is a possible diagnosis of ADD and more. There is the possibility of dual diagnosis and that prospect is not very good here. I am tired of all of this.
I know that many things have gotten to me, but this is one of the most. Yes, I have been diffcult for many because they have not understood. But, this is much to much. I am tired. So, because of all that has been going on, I have not been able to make all of my medical appointments. This aggravates me to no end. On Sunday, I was in the ER because of my migraines. When I express to the docs what has been going on, they do not look at me favorably. Yes, I know that I must continue to take care of myself for the sake of myself as well as my child. But, at times that is not all that easy. When I am utterly exhausted from the work day, what am I to do? I cannot quit my jobs; I cannot quite take some time off. I am looking forward to taking some time off. I am looking forwad to having some time to rest and to get reacqainted with my bed and the apartment. But, silly me. The obligations that are coming are just a little more than what I had initially anticipated. When I had called the police on my child, I never anticipated that the obligation would be this intense. I knew that it would get to be a battle; but, I did not anticipate all of this. I had to take a stand and to be sure that I would put a stop to all of what was going on. For some reason, some have never thought that I would be going through all of this. I have had no choice but to take a stand on what I have believed and to take a stand and be an advocate for my child.
I know that I must get over some emotional issues, but I am having the most difficult time with it. I know that I must acknowledge that some things will never change; but, I am such a dead-head about it. I know that the help from my church is just not there. I was told--"you have pushed so many away". I have heard this twice. So, this is the aggravation that I must deal with. "Pushed so many people away". hmmmm. This is an issue that no one can understand except the persons who are in the position of understanding--professionals. I have had to endure much during this past nearly couple of years. How can anyone understand? Am I supposed to just acknowledge everyone and have everyone come through my home like bulls in a china shop? First of all, at the diagnosis, they were not there. During the treatments, they were not there. At the end of the treatments, "wow, that was long wasn't it". So, my attitude is what? People say that they understand, but they have not. Simply, they have not. So, now that I have accepted the fact that they are not there, what do I do now? I have been attending another church. This is a small church, indeed. I am not keen on the idea of another church, but I know that the support that I have not received at the home church is not good. "Have pushed people away". This is something that rings in my ears very much. I will not be able to put that behind me for a bit; I am praying that I can get that done. I am believing that I will be able to understand and to let that go. I want to talk to many, but that would be of little good. They did not udnerstand when I was going through chemo, why would they understand now while I am experiencing the most difficult of my parental abilities now. No, there are so many issues going on. There are so many events that have created difficulties right now. These events are not going to go away any time soon. So, what next? What next? I suppose the assumption that we all have something that we should be doing for another person is always there. There is the assumption that there is always some else available to help out. But the reality of it all is that there is no one else there to help out. I would have loved and still would love to have someone come over and discuss things wtih me. That would be great. I would love for someone to come over and help out with a thing or two. But, that does not happen. So, I must lean upon the LORD for that help. That, of course, is my first point of it all. I must always look to HIM for all things. But, at this point in time, I really have never really had a time where the pressures of life are not so demanding. I have never really had a time in my life where things are just easy going. There is always something going on to be my challenge. This is the next context of my inquiry--why is it that these events never stop coming? Am I a glutton for punishement?
I think of so much that has and still continues to go on. I think about my health care. It has been very frustrating to have to experience this. But, even more so, why am I wasting my time with things that should not be?! Am I wasting my time seeking help where help is not going to be? It is not enough to be just praying. Praying allows us to understand where there is difficulty. Acting upon the WORD is the next thing. We are not to be just hearers of the WORD, but doers of the WORD. When are we going to be figuring that out? Pushing people away. Hmmmmm. This is quite the aggravation.
I am working on many upcoming things and event. But, I am working on overcoming. Keep posted. I do not want to sound enigmatic. I simply want to say that what I have experienced has been nothing shy of stupid. Just STUPID!!!
Looking on. Pressing in. Working diligently.
Sunday, January 15, 2012
Thoughts and reflections
No matter what, I do realize that life continues regardless how tired I am. I know that being tired is really part of this every day life, but there are times that I am just more tired than what I would like to be. This week has been incredibly exhausting. I have been to court this week for my kiddo. Yes, and to boot, I have had to put paperwork aside for the entire ordeal. I am getting to the point of getting caught up, but this is rediculous. I am having to put all of my stuff on hold for the issues at hand. My kiddo is taking up a lot of my time. For some reason, she seems to think that smoking marijuana is not wrong. For some reason, there are people out there that believe that smoking marijuana is fine and should not be considered to be sanctionable. First of all, the persons smoking it do not find anything wrong with their behavior because they cannot see the difference in their behavior. Secondly, any behavior can be rationalized away as ok. But, it is not ok. Long term effects are very serious and things should be reconsidered when it comes to it all.
I have been working diligently to keep all of my records straight and to keep my information up to date. This can be a pain in the rump. I am working to make sure that my office is cleaner and my papers are not piling up. This has been one ordeal that keeps me frustrated most of the time. I try diligently to keep my papers organized. One thing about my cancer walk is the incredible amount of mail and information that I must keep track. Since chemo, my memory is slightly changed and I need to stay focused on some things more diligently. I do have to say, though, that this is just slight. Having to be this tired makes a huge difference as well. I work doing so much and try to keep things organized. It is very much so a pain in the rump. Really, a huge pain in the rump. But, I am making it. At least, I feel that I am making it. I look back and cannot believe just how much I have been through and am working feverishly on getting it all done and complete. Staying organized is such an incredible challenge at times. Being a single parent going through these things has been so incredibly challenging. I have so much that needs to be done for me and then for her. I am amazed at just how much I have gotten completed.
But, one important thing that I am looking forward to is getting my insurance back again. I need to get to some medical appointments and looking foward to getting some more information. This information will give me some peace of mind. I look forward to more prayer as well. This has been very important to me. I am looking forward to one of the most exciting things this year as well--the Susan G Koman 3 day! It is 60 miles in 3 days. I can do this. But, in order for me to do that, I must condition myself and train. I am looking forward to that. Not many know that I want to do this and I want to train for it. I have to register for it and get the money ready for the whole thing. I am excited and eager to complete this. This event will be held in Seattle and I will need to be ready, of course. I hope that more will be willing to train with me. It will be exciting and quite exhilerating.
Looking forward. Pushing on. Pressing in.
I have been working diligently to keep all of my records straight and to keep my information up to date. This can be a pain in the rump. I am working to make sure that my office is cleaner and my papers are not piling up. This has been one ordeal that keeps me frustrated most of the time. I try diligently to keep my papers organized. One thing about my cancer walk is the incredible amount of mail and information that I must keep track. Since chemo, my memory is slightly changed and I need to stay focused on some things more diligently. I do have to say, though, that this is just slight. Having to be this tired makes a huge difference as well. I work doing so much and try to keep things organized. It is very much so a pain in the rump. Really, a huge pain in the rump. But, I am making it. At least, I feel that I am making it. I look back and cannot believe just how much I have been through and am working feverishly on getting it all done and complete. Staying organized is such an incredible challenge at times. Being a single parent going through these things has been so incredibly challenging. I have so much that needs to be done for me and then for her. I am amazed at just how much I have gotten completed.
But, one important thing that I am looking forward to is getting my insurance back again. I need to get to some medical appointments and looking foward to getting some more information. This information will give me some peace of mind. I look forward to more prayer as well. This has been very important to me. I am looking forward to one of the most exciting things this year as well--the Susan G Koman 3 day! It is 60 miles in 3 days. I can do this. But, in order for me to do that, I must condition myself and train. I am looking forward to that. Not many know that I want to do this and I want to train for it. I have to register for it and get the money ready for the whole thing. I am excited and eager to complete this. This event will be held in Seattle and I will need to be ready, of course. I hope that more will be willing to train with me. It will be exciting and quite exhilerating.
Looking forward. Pushing on. Pressing in.
Sunday, January 8, 2012
What to say about what has been said
This last couple of days have been very long and full of so much. Yet, I continue to move on. I have been making a lot of phone calls regarding more support and for me to be able to receive a little more pallitive care. That has been something that has been neglected since the time I was diagnosed. What is palliative care? This is an aspect that all cancer patients must have. Certainly, all persons should have this type of care with respect to any difficult and life changing diagnosis. This is the type of care that is considered holistic and makes care more complete. Since my diagnosis, I have not received any care of the sort. I have been forced to be my everything--physician, heal thyself. This has been something that I have begged for and have not received. I look forward to receiving more care. Something I would love--a massage. Yes, that would be awesome and would help to relax my being; however, I have learned to relax and to identify the areas of my life that need that attention. I have been practicing more exercising and working on my dojo. This has been quite a saviour to me.
I have been wanting to have a dietician. I have learned quite a bit about the meals that I am to eat and to understand what is acceptable and not. During chemo, I learned to eat slowly and not impetuously. Learning to eat foods that my body would handle was so important. Having mouth ulcers made a huge difference. I was sure to drink a lot more water and to continue with my multivitamins and my supplements. I was told that drinking Ovalitine was an incredible help to me and it was one aspect that ensured my health while I was going through the ordeal. When I had met my radiology oncologist, I was told that it was an excellent form of plasma. She was very pleased to hear that I was doing so well and that my numbers were excellent. Excellent nutrition is one aspect of palliative care that was not established from the beginning for me.
Learning what to eat matters significantly. Certainly, eating is so important. Being able to stomach the food is another. Eating slowly and chewing food thoroughly is important. As chemo effects the brain, the response center of the brain that registers how hungry you are changes. Too, chemo can make a person nauseous and can complicate the ability to eat. I was told that some handle it well and others do not. Sure, that makes a lot of sense. I was able to handle it very well. But! I was careful about what I ate, when I ate and how much I ate. Too, taking stomach aids made a vast difference. When my chemo changed, I had to get a stomach aid for the stronger infusion. But! It worked. I drank a lot of water and was very certain to keep a close eye on my output. I watched my uruinary output carefully and paid close attention to the color and odor. I know, what a thing that needed to be watched. But, as my kidneys and liver filtered my body, the chemo was certain to create an irritation to them. I remember that I had finally opened up a Hard Mikes and drank it slowly and carefully. This was my celebration from chemo. I was very careful not to drink the whole thing at one time. I do have to say that it was utterly delicious. Then several months later, I had had a beer. This did not go down very well. my kidneys hurt something terrible and I had been in a whole lot of pain. I have not had a beer since. I am looking forward to a small glass of wine. I was told that wine might be easier on my kidneys. But, I am looking forward to another Hard Mikes. This will work and hopefully will be more satisfying. This will be another celebration from the things that I have been enduring. Another aspect of palliative care--permit yourself a small indulgence.
Exercise. This cannot be emphasized enough. While it is so difficult some days to keep moving forward, exercise seems like the last thing on the list. It must be added. I was able to get some exercise and to complete dojo. I did my stretches and my low and high impact workouts. Although I was in a lot of pain and discomfort from the chemo infusion, I pushed forward. Then I would begin to feel better. The wonderful thing about exercising is that the body does respond to the pain receptors and the stimulus of additional activity. Activity is important to mental and spiritual health as well. When we are beginning to move around, we do feel better about ourselves and the perspective of our predicament and situations changes. No, it is not fun having to go through chemo. However, it is fun to watch others as they look on and cannot understand how it is that you are functioning better than what you were supposed to.
Be kind to yourself. Allow and permit yourself to have whatever a day you want. Then go from there. While the emotional ups and downs are going to come, allow them. They cannot be prevented. The chemo induces menopause in women and the whole aspect of changes and control are out the window. Your paradigm is changed forever. What was such an incredible help to me was my faith. Despite it all, my faith was what has carried me through. I prayed. I listened to music. During the nightmares, I would ask for prayer and believed that I received them and was put at ease that my plight was not just for nothing. I believe in the power of prayer. I believe that when we pray our prayers are heard and we have favor with the LORD. Continue to pray.
I listened to a lot of music. I love to listen to harder music/rock/grunge. But! Doing it the Christian style. Yes, I love contemporary as well. I listened to it all. The harder the days, the harder the music. Did I ever love it!!! Yes, I did!!! It was so helpful when I was able to listen and unwind--I did a lot of crying, laughing and listening. I would have loved to be able to get to a concert during that time, but chemo had changed me in ways that I had not expected. Too, when we are in chemo, we are told that we are more apt to become sick from the common cold. I was never a germaphobe before, but during chemo, I became one. Because our immune system is changed, we are more susceptible to germs/viruses that could make us sick. Being in large crowds would not be ok. But! we can certainly have nothing less than a home entertainment center in our own homes. It would be good to have that little added benefit from whatever cable/internet carrier you have to be able to experience a little more fun with the care. Palliative care and the arts!!! that is something that cannot be refuted.
Palliative care! There is so much more to that than what is initially expected. If there is any doubt, be sure to ask about it when you see your oncologist or your regular doc. That is so quintessential to your overall care.
Pushing on. Looking on. Caring on.
I have been wanting to have a dietician. I have learned quite a bit about the meals that I am to eat and to understand what is acceptable and not. During chemo, I learned to eat slowly and not impetuously. Learning to eat foods that my body would handle was so important. Having mouth ulcers made a huge difference. I was sure to drink a lot more water and to continue with my multivitamins and my supplements. I was told that drinking Ovalitine was an incredible help to me and it was one aspect that ensured my health while I was going through the ordeal. When I had met my radiology oncologist, I was told that it was an excellent form of plasma. She was very pleased to hear that I was doing so well and that my numbers were excellent. Excellent nutrition is one aspect of palliative care that was not established from the beginning for me.
Learning what to eat matters significantly. Certainly, eating is so important. Being able to stomach the food is another. Eating slowly and chewing food thoroughly is important. As chemo effects the brain, the response center of the brain that registers how hungry you are changes. Too, chemo can make a person nauseous and can complicate the ability to eat. I was told that some handle it well and others do not. Sure, that makes a lot of sense. I was able to handle it very well. But! I was careful about what I ate, when I ate and how much I ate. Too, taking stomach aids made a vast difference. When my chemo changed, I had to get a stomach aid for the stronger infusion. But! It worked. I drank a lot of water and was very certain to keep a close eye on my output. I watched my uruinary output carefully and paid close attention to the color and odor. I know, what a thing that needed to be watched. But, as my kidneys and liver filtered my body, the chemo was certain to create an irritation to them. I remember that I had finally opened up a Hard Mikes and drank it slowly and carefully. This was my celebration from chemo. I was very careful not to drink the whole thing at one time. I do have to say that it was utterly delicious. Then several months later, I had had a beer. This did not go down very well. my kidneys hurt something terrible and I had been in a whole lot of pain. I have not had a beer since. I am looking forward to a small glass of wine. I was told that wine might be easier on my kidneys. But, I am looking forward to another Hard Mikes. This will work and hopefully will be more satisfying. This will be another celebration from the things that I have been enduring. Another aspect of palliative care--permit yourself a small indulgence.
Exercise. This cannot be emphasized enough. While it is so difficult some days to keep moving forward, exercise seems like the last thing on the list. It must be added. I was able to get some exercise and to complete dojo. I did my stretches and my low and high impact workouts. Although I was in a lot of pain and discomfort from the chemo infusion, I pushed forward. Then I would begin to feel better. The wonderful thing about exercising is that the body does respond to the pain receptors and the stimulus of additional activity. Activity is important to mental and spiritual health as well. When we are beginning to move around, we do feel better about ourselves and the perspective of our predicament and situations changes. No, it is not fun having to go through chemo. However, it is fun to watch others as they look on and cannot understand how it is that you are functioning better than what you were supposed to.
Be kind to yourself. Allow and permit yourself to have whatever a day you want. Then go from there. While the emotional ups and downs are going to come, allow them. They cannot be prevented. The chemo induces menopause in women and the whole aspect of changes and control are out the window. Your paradigm is changed forever. What was such an incredible help to me was my faith. Despite it all, my faith was what has carried me through. I prayed. I listened to music. During the nightmares, I would ask for prayer and believed that I received them and was put at ease that my plight was not just for nothing. I believe in the power of prayer. I believe that when we pray our prayers are heard and we have favor with the LORD. Continue to pray.
I listened to a lot of music. I love to listen to harder music/rock/grunge. But! Doing it the Christian style. Yes, I love contemporary as well. I listened to it all. The harder the days, the harder the music. Did I ever love it!!! Yes, I did!!! It was so helpful when I was able to listen and unwind--I did a lot of crying, laughing and listening. I would have loved to be able to get to a concert during that time, but chemo had changed me in ways that I had not expected. Too, when we are in chemo, we are told that we are more apt to become sick from the common cold. I was never a germaphobe before, but during chemo, I became one. Because our immune system is changed, we are more susceptible to germs/viruses that could make us sick. Being in large crowds would not be ok. But! we can certainly have nothing less than a home entertainment center in our own homes. It would be good to have that little added benefit from whatever cable/internet carrier you have to be able to experience a little more fun with the care. Palliative care and the arts!!! that is something that cannot be refuted.
Palliative care! There is so much more to that than what is initially expected. If there is any doubt, be sure to ask about it when you see your oncologist or your regular doc. That is so quintessential to your overall care.
Pushing on. Looking on. Caring on.
Saturday, January 7, 2012
Just keep swimming, swimming
I have been on the phone lately with many people. I have had to make several telephone calls regarding my kiddo as well as myself. I am so tired and to express this to many is very important. I was told by G that I should not use this "cancer" as a crutch; rather, I should move along. Well, I have not been using this as a crutch, rather as what it is. It is an avenue for many to understand what has been going on in my life and how it has impacted my family. "Family". I can really see how that is going. "Family". To me, that can be an ugly word and a cuss word. Just the same, I have been on the phone. I have been making many calls about getting some help and to get my health insurance back in order. It seems that it must take several months of on and off to be able to get my health insurance. The paperwork drives me abolutely nuts. There is so much that must go on that I just cannot express and it must get out.
I am tired. I must tell myself, "just keep swimming, swimming". Seems like the little ditty that Dory had sung in Finding Nemo. "Just keep swimming, swimming". That is hard. So, I have been making more phone calls. When I was on the phone this past couple of days, I have noticed just how much I have been through to get to this point. I had to express to one gal associated with the Breast Cancer Awareness through Providence. This is awesome!!! Why didn't I get this at the beginning? I had asked for many things and did not get it. I had asked for a lot of help and did not get it. I had asked for others to help out and to help me with the trek and I did not get any help. Why? Why was it not made available to me? I do not know. But, I hope that I can get answers. I had expressed that I did not get help with a Dietician, Naturopathic Oncologist, someone to talk to, clothes, skin care and the like. For example, I had to be my own everything. I have always leaned more toward the holistic approach for care and healing. So, I was sure to be able to get my multivitamins in me; I drank my ovaltine; dojo; a lot of praise and worship; I cried a lot and was sure to allow my emotions to flow freely. For some, it scared them; but, I did not care. I needed to allow all of this to come forward. I could not and did not want to be bottled up. There was so much that happened and you know what it was.
I did express to the representative that called that I sure wish that I had had some clothes--hats, scarves, warmers, gloves, lap blankets, lotions, and the like to help out with good and quality care. I could have used some footies as well to keep my feet warm and secure. To this day, I wear socks to bed and to keep myself warm. I do not take any chances any more. I love to be warm and cool at the same time. I have already been sick with sinus and ear infections and bronchitis. This has not been fun or attractive.
People look on. People still have no idea what to do to help. They do not ask and they do not want to know. This makes me feel very uncomfortable . But, I do know that I will continue to press forward and to get my donations going and to be sure to keep my outreach going. I want to be sure to promote what healthcare is all about. It is more than just providing the immediate care; it means that you must extend yourself as a human being and offer compassion. This is what I want done for me and this is what I have not gotten. Sure, PM emailed me and we had conversations. That was the extent of that and it was done begrungingly. This is not acceptable. This is not ok and this will not work. I want things to change and I know that this will not change any time soon. That is to the detriment of it all.
Just the same, I am looking forward to 2012. I am looking forward to gaining ground. I am looking forward to the 3-day 60 mile for Susan G Koman Foundation. Wish me luck.
Pressing in. Pushing on. Considering on.
I am tired. I must tell myself, "just keep swimming, swimming". Seems like the little ditty that Dory had sung in Finding Nemo. "Just keep swimming, swimming". That is hard. So, I have been making more phone calls. When I was on the phone this past couple of days, I have noticed just how much I have been through to get to this point. I had to express to one gal associated with the Breast Cancer Awareness through Providence. This is awesome!!! Why didn't I get this at the beginning? I had asked for many things and did not get it. I had asked for a lot of help and did not get it. I had asked for others to help out and to help me with the trek and I did not get any help. Why? Why was it not made available to me? I do not know. But, I hope that I can get answers. I had expressed that I did not get help with a Dietician, Naturopathic Oncologist, someone to talk to, clothes, skin care and the like. For example, I had to be my own everything. I have always leaned more toward the holistic approach for care and healing. So, I was sure to be able to get my multivitamins in me; I drank my ovaltine; dojo; a lot of praise and worship; I cried a lot and was sure to allow my emotions to flow freely. For some, it scared them; but, I did not care. I needed to allow all of this to come forward. I could not and did not want to be bottled up. There was so much that happened and you know what it was.
I did express to the representative that called that I sure wish that I had had some clothes--hats, scarves, warmers, gloves, lap blankets, lotions, and the like to help out with good and quality care. I could have used some footies as well to keep my feet warm and secure. To this day, I wear socks to bed and to keep myself warm. I do not take any chances any more. I love to be warm and cool at the same time. I have already been sick with sinus and ear infections and bronchitis. This has not been fun or attractive.
People look on. People still have no idea what to do to help. They do not ask and they do not want to know. This makes me feel very uncomfortable . But, I do know that I will continue to press forward and to get my donations going and to be sure to keep my outreach going. I want to be sure to promote what healthcare is all about. It is more than just providing the immediate care; it means that you must extend yourself as a human being and offer compassion. This is what I want done for me and this is what I have not gotten. Sure, PM emailed me and we had conversations. That was the extent of that and it was done begrungingly. This is not acceptable. This is not ok and this will not work. I want things to change and I know that this will not change any time soon. That is to the detriment of it all.
Just the same, I am looking forward to 2012. I am looking forward to gaining ground. I am looking forward to the 3-day 60 mile for Susan G Koman Foundation. Wish me luck.
Pressing in. Pushing on. Considering on.
Sunday, January 1, 2012
Following up
This past couple of weeks ago, I had had another appointment with my oncologist. We are meeting now once every three months. This, I understand is part of the trek. I am not all that opposed to this. Going in to the building and passing by the infusion center is really something else. However, I did need to get blood-work completed and was ready for them. I had had lots of water to drink as well as had my hands warmed and ready to go. The blood draw was easily done and from there a good sample. My oncologist was very pleased to say that the numbers were excellent and from there we were good to go for another three months. But, I did get the speech from him regarding how my body is not "protected" from all of the hormone shots that I am not getting. So???? What does this mean? I know for certain that it means a lot. Because of all of the stress that has been going on with my kiddo, I have not been able to get to the appointments like I am supposed to. Not to mention, I have no intention of going through the emotional roller-coaster that comes with the hormone shots. I would have to really just live my life out in the back eight-million and not hope to get this again. I am very sensitive to all of the treatments and am not looking forward to it at all. I have expressed to my oncologist that I have been undergoing a lot of stress in the home and this is not at all conducive to any treatments.
Does anyone really understand what it means? I do not think that it really is something that I would like to say. No matter what, I look at all of this through the eyes of someone who has had a very difficult battle with others not helping. I really have to get beyond this, but I am having a difficult time with it. I am working very hard to be sure not to express it all the time. I supposed, I need to teach others. Just the same, when others ask what is going on, I am very careful how to respond. I am not all that excited over the fact that the stress continues. I look forward to some less stressful days and look forward to some more fun and relaxation. I am looking forward to the summer and some good fishing days. Perhaps, some days where I will be getting out and fishing by myself and having some great days out and about. I need to have some quality R and R.
I have been working on my book as well. It is slow coming but I am diligent to get it completed and to get it published. Yes, I have only told a couple people and now it is on the internet. I am working on my book. I am looking forward to publishing more, but I am looking forward to working less and smarter. Still, I am looking forward to getting things caught up and to bless others in the process.
Pushing on. Pressing in. Looking forward.
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