Sunday, January 15, 2012
Thoughts and reflections
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
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 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
Saturday, December 10, 2011
So much more to say
The issues of the home are persisting. Now, my kddo is in more trouble than last year. Yet, the troubles that have existed within has been the neglect that has occurred from others who have not been there to help out. Very few have come to the home to help. So far, only three people have come. This is not on a regular basis; rather, it is sporadic. One person has come only once. The other person comes on a more regular basis and the fellowship is good. But, this is only for me and not for the family unit as a whole. The third person only has come a few times and helps with some things. Please do not misunderstand me; I look forward to all company. However, having cancer creates a lot of need. Why isn't it that the need is not met? Why are so many people afraid of it? Cancer is not catchy. I have said this before. Cancer is not catchy. The attitude of no help is catchy. Being selfish and self-centered is contagious. We must break the mold. And why can't we? That is a golden question for another day. I look forward to answers and I am just that person to be able to get those answers.
It is time for healing. It is time to get things on the move. Yes, I know that the days ahead with the kiddo are going to be difficult and tumoltuous. And! I do know that my LORD has said that HE will never leave me or forsake me. I am HIS.
Working on. Pushing on. Seeking on.
Saturday, November 19, 2011
I can and therefore I must
Well, it has been nearly seven months and the tiny livestock is still here. No matter what I try to do, it is not going to go away any time soon. It does not help that there are other parents that the kiddo goes to visit and that she brings it to their house. I wonder what goes on with other parents regarding all of this. I would love to have a conversation with some of these parents and see what they know about their own children. But, I wonder if they really do care or if they are just waiting the time until they actually move away from home. I wonder. I cannot help but to wonder. I am tired all the time and have a lot of stress and anxiety built up regarding all of this. I have no relief. I look forward to relief. In the meantime, I must be able to get my tasks done and completed. I really want to some time to just relax and to get my obligations completed.
These matters are just a concept for some. This is my reality. I look back at the year of events and no matter what, I am no closer to getting some answers. What must I do? I am going to figure some things out if necessary. Parenthood is very difficult for me these days. The lies that I am given and the behaviors that I have seen add up to many things. It has been a long year and now, this? I still have so much to do.
And then, I thought that I would have an adult night with some of the ladies from the church. Oh, was I wrong. So, I made a small faux pas and now, do I feel small for it. "oh, just wanted to tell you something small...about your phone". Ok. I have to remember that I am with people that are very "soft" around the edges. I have to remember that I must keep a distance from many or they might feel put off with me. It is amazing. So many do not undestand the past year and how do I explain it all? I can't. I will not any more. What is mine, is mine. I have no desire to keep others in the loop about what is going on. How can anyone understand what is going on. At times, I do not understand what is going on. But, I do understand that I must go through this. I am hoping and believing that this will improve.
Looking. Hoping. Believing on.
Saturday, November 5, 2011
For every season turn, turn, turn
It has been a long and drawn out week. Last week, I had had an appointment with my OB/GYN. We were discussing some aspects of my care for the hormone suppression. All my adult life, I have had difficulties with my cycles and now, things are very much so pressing. The plans were that I was to get the shots. Well, that did not go as I had planned. Of course. The side effects were just too much and the emotional swings that I would get was too much as well. The hot flashes are continuing, thank goodness. But the Lupron that I was receiving were just that much more extreme. I cannot wait for this to be done.
So, I had asked that I could have my ovaries removed. If that were the case, then the danger of estrogen buildup in my body would be reduced and my other breast would be protected as well as other parts of my body. Well, that was going on to two weeks ago that I had had this appointment. The doctor said that she needed to speak to my oncologist and confer with him what was going on. She had said tht she wanted to get more information about my request and the outcomes of the rapid reduction of estrogen with respect to the treatments and the other stuff. I do not know how much I can take of this. I was asked if I had taken another drug and I had said no. The only drugs that were used were the tomaxofin and the lupron. Yuck!!! I really do not care for either one of those, but I was willing to just get this over with. So, I have not heard anyting back from either my oncologist or from the Ob/GYN. Makes you wonder. So much time is passing and it is good. I hate this journey, but I am learning to say much more with respect to what I have to do. I know that I have to continue with the journey. I have no choice. But, what I have noticed just the same is that the tension, stress and the added aggravation persists. I do not like that. Paperwork beyond all things and from that point, more doctor's appointments. I still have to get my other mammogram and a return visit with my neurologist. I have had so much other stuff going on from my kiddo that it has distracted me from all other things. I really am tired. Not just weary from all of the medical appointments, but from the whole journey of it all. I work still and it is tiring to go home and find out that things were not done and etc. But, now, recently, my kiddo has been acting out and that has been taking my time away. I need to be very diligent about that as well. I still want to continue to seek after what I want to do with my business and it is amazing to see just how much time I do have. Plus reading and studying my Bible. That is another thing that I plan on keeping track of.
Moving along. Turning. Journying on.