Where the best people go

I had a less terrific day than I did yesterday and I am glad that I have this blog to complain about it in, because in real life I don't. I had more pain and was more tired, and I choked on whatever I had to drink more often. That has left me somewhat frustrated, but I was able to solve the resulting low spot in the late afternoon very adequately and for that I am proud of myself. I took all my medications a lot sooner and I ate a lot earlier and I recovered and felt better quicker. 

I felt so good, that after the rainstorm, I took Tyke for a walk and it felt good to be out there in the much cooler world, The mugginess was gone and it was actually kind of chilly outside. I wore my leather jacket and that was not a luxury, but it was the kind of temperature that I am comfortable with. I always think that it kills whatever germs float around and because I am going to have chemotherapy, I am going to be especially aware of those. Chemotherapy plays havoc with your immune system, so you have to avoid coming in contact with sick people specifically and bacteria and viruses in general. 

I think I got through to the Cowboy how much his presence here means to me and what a difference it makes in me being able to accept the fact that I have cancer. I have short periods of time when the sheer horror of it stares me right in the face and it scares the hell out of me. I am sure that if the Cowboy were not around, I would have many more of those moments. It is his sanity that keeps me sane. I am not surrounded by people who have their shit together and I would be faced with their issues also if it were not for him. I think he appreciates that fact because he is witness to it. 

I know that I am a tough broad, and that as a rule I can reason my way through my problems, but that does not mean that I do not also feel my emotions very intensely. I have to deal with them in a rational way and not let them get the better of me. I have all sorts of tricks to make it through the day when it gets rough, so things don't always come easy, although it looks that way. I can have the outward appearance of total calm and be inwardly boiling like a hot kettle. Maybe it would be a good idea to take the lid off every once in a while. Probably nothing really too awful would happen. 

I have turned analytical and that was not my intention. I wanted to keep it light, but there you have it. And now we await Monday and the new week when everything will start up again. It is as if duty calls us and we have to get back to our jobs. The weekend was the interlude we needed.

On the opposite side of life

I want to live on the opposite side of my cancer and not embrace the fact that I have it at all. I will acknowledge it, but not identify with it and and become one with it like some self help books suggest that you do. And even if I say I acknowledge it, I only do so barely with hardly an introduction at all. I will keep myself busy with it on the days that I have appointments and treatments, but the rest of the time, I will try to put it out of my mind. Except for when I sit down to write about it here, of course. I do need to vent about it now and then. 

I am not planning on having long discussions about my cancer with other people or to bring it up in a conversation unless there is no other way around it. I will not choose it as a subject to talk about. There are several other things I do as a rule not talk about, so I do have some practice at this. You would be surprised at how easy it is not to talk about things. 

I am so sure about this because this is my state of mind now, but it could change, of course. That is still a woman's prerogative the last time I looked. Maybe that is a prejudiced point of view and it is a man's prerogative also. 

In the morning I want to wake up and get out of bed and think about my first cup of coffee. That's what  I want to be on my mind and I am going to make damn sure that it is. I want to enjoy all the good days that I have and especially every moment that is pain free and I am not going to waste my time sitting around moping because I have cancer. It is just like any other illness nowadays and it doesn't necessarily have to kill me. It is possible that I am in denial, but I would not be better of if I were not. 

Besides, I promise not to be in denial on the days that I have the appointments and the treatments. I will be as engaged as I can be and ask questions and look things up. 

Walking to which beat?

I am trying to live my life in a more normal manner as if I only have cancer part time on the days that I have appointments. I am getting fed up with having cancer and I don't like to be reminded of it too much. It is bad enough that it is almost the first thing that I think of in the morning when I wake up, because I do have to remind myself initially of what is wrong. 

I have grown tired of having to tell people what is wrong with me and have developed a very shortened version of how to explain it. Nobody listens well in the first place and usually I have to repeat myself, so it is better if I do that in as short a manner as possible. It is also strange how everyone wants to have an opinion on it, as if cancer is something you can critique. 

The oddest thing is, how people want to own my cancer as if it belongs to them and it is afflicting them.  I don't even get to own my own cancer and decide how I feel about it. Everybody else wants to decide that for me. The only person who does not waltz over me like that is the Cowboy. He has the most delicate and sensible way of letting me deal with it myself.

I have a heck of a hard time in the late afternoon and early evening and have decided that I need to move up the time when I take all my medicines by an hour. I start feeling very low around 4 pm, so that is when I need to take my regular medicines from now on. This is also when the pain medication starts to wear off, but I have to wait a couple of more hours to take the next pills. I also have to make the time when I take them an hour earlier at least. 

The Cowboy buys interesting food for me so that I will be excited about eating and so that my stomach will not protest. He reminded me that the reason I am losing weight is because I am feeding a cancer at the same time. I have to think about nutrition especially now. I have to eat dinner earlier in the day and not wait for the conventional time to come around. There are all of these little rules that I have to break. I have to reinvent my day. 

I am sure that everyone with cancer has their own unique experience and that everyone has to invent their own way of how to deal with it. I am by no means an expert. I have only known for a short time that I have it, but I am learning an awful lot in that very short time. So far, they are only wisdoms that apply to me and maybe they will always be. I can only write down what I feel as it happens to me. 

Let me think about that

Although I disagree with the diagnosis, I was told that I have non small cell lung cancer in the lymph nodes around my lungs, but not in the lungs themselves. I may also have the same type of cancer in the lymph nodes of my thyroid, or it could be a different type of cancer all together. The oncologists are going to debate about this a bit more. Depending on that outcome, I have either stage 3 or stage 4 cancer, but it is called adenocarcinoma. The primary tumor was not found, but that happens sometimes. 

As far as I am concerned, I have lymph node cancer and I will put it to the specialist on Wednesday when my next appointment is. It may not change the treatment, which will consist of chemotherapy and radiation, but I would like for things to be called by their proper names. My lung specialist is in training and being guided by well educated and experienced oncologists, so I am sure I am in good hands, but I do want to have something to say about what is taking place myself. 

I have been known to be a stubborn Dutch woman and one has to come with good arguments and solid facts to convince me of something before I will stake a claim on it. I do good research myself and talk with other people who also may know a lot. 

After I had the appointment this afternoon, I was very angry at the world in general while I tried to give a place to everything I had heard. I am over that now and feel back to my old self who is more in charge again. I don't feel so helpless anymore. I don't feel that something is happening to me outside of my control, but I always feel better at night and maybe in the morning I will be angry again.

Like my daughter said to me so wisely today, there has to be room for all of my feelings and all of them are valid. I should not try to push one of them away in favor of another. That is not how it works. 

So, what's next?

I have started eating very uncomplicated food in smaller portions because that is what my stomach likes better. It wouldn't surprise if there was something wrong with it or my esophagus. Maybe I have metastases there as well, or maybe that is even where the primary tumor is. I will know on Thursday when I will get the results of the PET scan that was made this morning. I know nothing about it at this point, although everyone keeps asking me about it. The radiologist did not sit and discuss it with me afterwards!

The first thing I did when I came home, was make a pot of coffee because I was dying for a cup (no pun intended). I was not really hungry until much later and tried to eat two small wheat rolls with ham and cheese, but my eyes turned out to be bigger than my stomach and I had to give one roll to Tyke, cut up in bite sized pieces. He sure as heck was happy with that. I figured that he deserved something special too. So much is going on here lately and it is a lot to deal with for him too. 

Tomorrow the Cowboy is coming back from Rome and we all will be happy to see him, including Tyke. It feels like he has been gone for ages and I have missed him and his helping hands. Tyke will be thrilled because the Cowboy has become his real buddy and Tyke loves him as much as he loves me. 

It is now very quiet here after a very busy day of people coming and going. I did manage to take a one hour nap in the afternoon and find that I need more and more of them as I physically don't last as well as I used to. I am not that physically active now, but I do wear out quickly. I am also losing weight, but I have not been on the bathroom scale in a while. I will do that in the morning if I remember to. 

I suppose you could call this another one of those happy moments that I regularly have and they usually happen when everyone is gone and I am on my own with the animals and all is peaceful and quiet. If I were religious, I guess you could say that I was with God and maybe I am with my higher being now and that is where the sense of tranquility comes from. Maybe I do know God after all. It is here.

The PET scan

The PET scan is being done this morning at 10:15. For three hours beforehand, I can't eat or drink anything so that is going to be a bit tough. I will miss having my morning cup of coffee and the tall glass of ice cold lemonade that I always drink. But it is a small price to pay for the sake of finding out where the primary tumor is located and in how many places there are metastases. The scan will take about two hours and I will be more than ready for a cup of coffee after that. 

My GP came to visit me yesterday and we had a good conversation about everything a person with cancer should talk about. I had no problem speaking openly to him about what my prognosis could possibly be because I have metastases and the sort of treatment I could possibly expect. We also talked about euthanasia, which I don't want, and palliative care, which he provides. He and his colleague will be closely involved in my future life with cancer and it is good that he knows all my wishes. He is an amiable man and I think our co-operation will be fine. 

My daughter called and we talked about the fact that the primary tumor could be found some place other than in my lungs because nothing showed up there in the CT scan and it is strange that it didn't. It only showed tumors in the lymph glands and around the windpipe. Well, it is all speculation and the PET scan will tell the real story so I have to wait for the results of it. On Thursday I have an appointment with the lung specialist at the oncology center of the hospital. 

Although the pain medication works for the most part, I do have some pain now, but I don't care because it makes me feel alive. I would rather not be in a near coma from the medication. I prefer to feel some pain as long as it is not overwhelming. That makes sense, doesn't it?