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.
Sunday, January 15, 2012
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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