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.

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.

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.

So much more to say

It has been a while since I have posted last. I am looking forward to being a little more consistent. There is so much going on and my heart is just torn out of my chest. The things with my kiddo persists but even more so, things just persist. Last weekend, I had had the most difficult time. I had been to an ornament party at my pastor's house and thought that it was a good idea. Well, no. It was not a good idea. I had no idea that there would be so many lit candles and the scents from them made a huge difference. It triggered a massive migraine and I was in so much discomfort for the weekend. I am a bit discouraged. I do not care for such migraines, but I did what I knew that I was supposed to. I did my best to sleep and to focus on moving beyond the migraine. This is so difficult when it comes to such intensity. Getting in a quiet and dark area was important. But! I did take opportunity to talk to many about this. If so many "love me", then why don't they step forward and look. I was in my rig falling into deep sleep, coming out of it, then going back into deep sleep. I heard a lot going on around me and I had realized that I might have passed out several times. Regardless, I did ask others around me if they had felt any concern regarding my situation. Guilt? Yes. Some should feel guilty. If they knew that I was sick, then they should have said something. Yes, during chemo, many saw how physically strong and determined I was. This strength, determination and strong will to continue was misunderstood. We should be made to feel guilty if it means that we overlook what we are to do for one another and walk past it. This is nothing less than apathy. Why should we feel so cold and heartless regarding those people who we say are important to us and we walk away from our human obligation to seek after the care and keep of the other? Why should we be so heartless about what is needed to be done? It simply happens. We do not feel that it is necessary to get that done.

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.

I can and therefore I must

I am deeply amazed at some things. I must say that I am eager to see the light of what is going on in my home. Yes, it has been a year now since I have started my chemo and gotten into the mix of things. In a few days, I will have had my head shaved from what was going on with chemo. For the anniversary, I have had my head shaved again. But, that is just the tip of the iceberg. This past several weeks, there have been so many difficulties in the home that I cannot just sit back and hope for some relief. No, the relief does not come. No, the relief is not anywhere in sight. But, I keep working through these difficulties. I am not happy, nor pleased at the events that have been going on. Yes, the kiddo. What do I say?

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.

For every season turn, turn, turn

For every season turn, turn, turn. Good song, but the application can really hurt at times. When I last wrote, I was being angered by some things that were not right at the church. Yes, two of the ladies have been a very interesting crew. Two persons who took it upon themselves to discuss personal information out of turn to each other. So, since then, I have been asked for forgiveness from one person and not the other. It seems that the other person has not appologized for their behavior. This is wrong. It has been a long year and what irritates me the most is the injustice behind what was done. Sure, we all do bonehead things; but, what we do with all of that is up to us. Are we going to change what we are supposed to change, or are we going to be willing to take some strong medicine and change things. I am willing to take some strong medicine and I am willing to give some strong medicine.

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.

A blast into another unknown

I know that I have said how much some things really irk me, but I have to say it again. There are some things that really irk me. So, this past week has been full of adventure and fun. Really, NOT! I should be known by now for my apparent wit and humor. There have been so many things that have been going on this past year that I just have to say should not have happened. The events of this past year have really taken my family for such a drastic change. Since my last posting, I have had to make some very difficult decisions over my kiddo. She is 15 years old and now has the experience of having smoked marijuana. Where do I start? I do not know.

Since my diagnosis, I have had to accept that I am not in control of many things. Yes, I am not to be in control of many things. However, I am still responsible for making sure that my family is taken care of. There have not been many to come and help and every time that I think about it, I get very furious and very angry. I know, I realize that I must put that to the LORD and ask for help with this. This past year, I have seen so many strange and difficult things that have really been damaging to my family. I have had to be home trying to take care of myself while I watch my daughter go out of control with boyfriends and the like. I have suspected many things--primarily sex, drugs and smoking. I know two are correct but I am uncertain about her having sex. I know that I should not be so sure about that. It is possible that she may have been doing that as well. I have watched her go on while I have been helpless to do anything else. I was only able to take care of myself and that was barely at that. I worked and brought home a lot of money and attempted to stay in class. I was a fool about that. But, just the same, I did make an actual effort to keep in touch and in stride with things.

I watched her as she did bonehead things. I watched as she tried to make decisions about herself and trying to be very grown-up. I have attempted to make conversation and to no end. I have watched while others were not there to help or to provide any support. Cancer sucks!!! I have watched many things. People around me just did not know what to do. I was ostricized for so much and so many people kept their distance from me. While I was having difficulties with the things that were stirred up from past assualts, I had to war with myself about many thoughts and actions. I had a very difficult time. But, this month has been especially frustrating as I have seen some things become central.

I had to call the police on my daughter for drug paraphernalia possession. Now, she will be going to report and will have this on her record for some time. She has a lot to do to make up for it. Today, I received a letter in the mail stating that her liscense has been revoked and she will not be able to regain in for some time. This really solidifies things. She is getting the help that she was supposed to get many months ago.

Too, she has been itching and scratching. Yes, the tiny livestock!!! They have not paid rent either!!! I hate those things. I had to treat her this past weekend and it was more than what I could bear. I cleaned the entire apartment. But, what precipitated this was the straw that broke the camel's back--really. I was told that I could not come into our Home Group because of all of this. But, what was more aggravating was that one of the ladies from prayer had taken it upon herself to call this other person out of panic. So, I get the phone call of "I just heard"! Well, that was not for her to hear and passing on gossip was the hardest. At the time, I had no idea who had shared. So, I had asked before Sunday service. I did express to this person that it was the straw that broke the camel's back. I just cannot accept this type of behavior. Because my kiddo has had tiny livestock, I was not allowed to come to Home Group. Ok. So, let us fight fire with fire. When I chatted with PM, he told me that they can "jump". Well, ain't that about the most ignorant thing that I could have heard. SO, yes, I did. I emailed him with correct information surrounding these little critters. I was really amazed that this "well read" person did not know what he was talking about. Yes, I took it upon myself to correct him. Yea, chastize me later. I really don't care!@!

So, I had called this person and had expressed on voice mail that I was not going to return to prayer. I additionally expressed that the tiny livestock was nothing compared to the infection that I had acquired during chemo that was more contagious than the other little critters. No one seemed to be afraid of that. They were more concerned about the tiny livetock than a potentially contagious skin condition. We shall see, won't we!!! Am I upset? Oh, yes I am. This makes me feel more like a leper than when I did with the cancer treatment. To continue, I had called the other lady and left the same message on her phone that I did with the other. The first called back and apologized for her behavior and was concerned that she would have to step down from her position as prayer leader. I had told her that it would be unncessary because we all do bonehead things. She was nearly in tears (yes, I have to say that it was a little rewarding to hear that gossip can be punishable by emotions). I had expressed to her that she was not to step down and that despite her calling the pastor, I did not want her to step down. (I called the pastor myself and expressed the same thing.) Good! She can have a few sleepless nights like I have had for months. Yes, for months. Now, the other person has not called me to have any conversation. But, that is ok. What I told both of them will make a huge difference. Let us see just how much gets around the church. I will be happy to hear what is going on and let the ball roll where it may. I am so tired of all of this. For such a long time, my daughter has heard the rumor mill and so now, I have added something that everyone should reallly enjoy. I am looking forward to hearing some good juicy gossip come back to me. I am also looking forward to the looks and the separation and the distance. I am going to enjoy this once again. I have had my trust invaded and now, this is just not easy to handle. It is back to square one in some aspects. But, for the most part, I certainly hope that these persons learn to grow up and understand what they have been preaching. Be kind to one another. It really does make a difference.

Pushing in. Pressing on. Listening and watching.