How I deal with it.

I do most of my communicating about my journey with cancer on Facebook and I have a tone of voice there that is lighthearted and humorous because that is how I deal with all of this in real life. I can't seem to find that tone of voice here in this blog and I have been more and more reluctant to sit down and write anything about what I am going through. 

I do not want to rehash every detail of every test and treatment and procedure in this blog when the people who are interested already are reading about them on Facebook. There are maybe a few of you that I am not Facebook friends with, but that is easily solved by getting in contact with me and exchanging names. Not many people leave comments on my posts, so I can only assume that there is not enough interest to want to know how the rest of the story unfolds. 

If you only want to exchange email addresses, than that is fine too. I'd be happy to start up a correspondence that way. As long as I have the time and energy, I am willing to spend them on a good cause. 

For now, I am saying goodbye to this blog, but if I survive my bout with cancer, I may some day come back to it. The future is too uncertain for me to predict. 

An honest attempt

I will try to write a blog post but you will only know about that fact if you find something written here in the morning. I am awfully tired and it is in the middle of the night, but I am not in the mood to go to bed. I am forcing myself to stay awake, not by drinking cups of coffee, because they don't agree much with me anymore, but by drinking tall glasses of lemonade and having some small snacks to eat every once in a while. I am trying to get my energy out of small sources of sustenance like cup of soup. These agree with me most these days. 

Between the Exfactor and the Cowboy I have been eating a lot of sweets lately in the form of cake and pie and chocolate and I have had more than my share of them and , besides, I think they are not good for me to eat. I think these two men had the silent agreement to try to make my life as pleasant as possible by feeding me junk food, but I have to tell you that this idea backfired and I now can not see another piece of chocolate. I am dying to eat healthy foods in the form of whole wheat sandwiches and fruit. It is a good thing that the Cowboy is leaving to go back to the States this weekend, because my digestive system would not survive anymore of this onslaught. 

The Cowboy has come down with a cold and is trying very hard not to contaminate me. We have disinfecting hand gel and Dettol tissues and wash our hands often. We are also keeping at a healthy distance from each other. In another week, my immune system will be at its weakest, but he will be gone by then, It will be a time when I will have to be careful. I am still clearing my throat a lot and am still very hoarse. That has not improved. I suppose I will have to be patient. 

I will go to bed now simply because I have to be sensible. I do need to get some sleep if I am going to function tomorrow. 

Got that done too

I successfully rounded off the first set of chemotherapy yesterday morning without getting sick from it at all, so I am much relieved about that. Whatever medicines I got to prevent that from happening, worked and now I can only hope that they will keep working for the two remaining sets that I have coming up. I have been told that every experience is different and to not count my blessings ahead of time. You know, of course, that I will do that anyway being the optimist that I am. 

I was called yesterday and told that the preamble to my radiation therapy is starting this coming monday with an interview and another pet scan to establish the exact location of the tumors in my lymph system.  Measurements will be made so that the radiation can be directed exactly at these locations and not a millimeter away from them so as to spare as much healthy tissue. Each time I get radiated, I will have to be in the same position that I was in before. 

The radiation starts on the 28th of July and will take place in the morning and the evening and itself only lasts a few minutes. It is getting into the right position that is crucial. I will go home between these two sessions. I have transportation arranged that is paid for by my health insurance company. I have been told that the radiation therapy with zap my energy and I am getting 39 days of it. That, along with the chemo, will have me worn out in no time, I think. 

Because the weather has been so hot, it has been uncomfortable to wear scarfs, and at home I walk around with a bare head. When I go out, I wear a cap, but yesterday I ordered some light weight knit hats that should get here today.  They were on sale and come in very bright colors like apple green and orange-pink. I think I will be happy with them for every day use and leave the scarfs for special occasions when I want to get dressed up. Having a bare head feels the best, but I realize I have to keep it covered up a bit so as to not be too confronting. The Cowboy did discover a widow's peak yesterday and told me that was something special. 

I have to enjoy these three days that I have coming up that are going to be relatively quiet and uneventful and then all hell breaks loose. I am going to have to be ready as I will ever be.

And so I arrive on day two

I think it is more than time to write a post that informs you about how things are going with me right now. I had been so dreading the chemotherapy, that I did not feel up to writing much at all. I would start to write a post, but then get stuck for the right words about one third of the way down and end up deleting it. I was worried that the chemo was going to make me feel very sick, having been warned by the chemo nurse that this could very well happen. Actually, I was prepared for it to and was not very excited about going into the hospital.

Imagine my surprise when I did not get sick at all! When that overnight stay at the hospital turned into a little holiday. It was like staying at a luxury hotel and I have to find out where to get a bed as comfortable. I got my three square meals a day and for hospital food, they tasted fine. The nurses were very friendly and were very competent at their job.

Of course, I was there to be treated for cancer, so it really was not like a holiday. But at least it was not the traumatic experience it could have been and I am grateful for that. I am home again now, after also having the MRI scan made of my brain today, and I am in good shape. Tomorrow morning I have to go get one more chemo treatment and then I have to wait eighteen days until the next ones. All my blood levels will have to be good for me to be able to do the next series. During the second ones, the radiation therapy will start.

I really am in fairly good shape, mentally as well. I have physical pain, but the pain medication works pretty good. There usually is some blessing to count and as a rule I feel real good at the end of the day. I make sure that I take advantage of that.

On an unstoppable train

It has been decided by the team of specialists that the very huge enlarged lymph node by my left lung, is really the primary tumor and is actually in my lung. I will be getting the treatment assuming that this is the case, because any less would soon mean the end of me. I will start the first set of chemotherapy this coming Tuesday and will have three days of it with one night in the hospital. Then I will have eighteen days off while my blood count goes back to normal. When it is, I will have another three days of chemotherapy and at that time the radiation therapy will also start. 

I will have three sets of chemotherapy and thirty days of radiation therapy when I will have to go into the hospital in the morning and in the evening to get a dose. Then I will have nine days when I will get a single dose every day. This is providing that I react well to everything and that it can all go according to schedule. Nobody said that this is going to cure me and I think I have to assume that it will possibly not. My survival chance is 25%. That is not very high.

The specialist in charge of my case is very good and she gives me a lot of confidence. I think I am in good hands. Yesterday, I also met the chemo nurse and the radiologist and I am equally impressed with them. Everything that is going to happen has been explained to me and also what the effects of the two therapies are going to be on my body besides hopefully destroying the cancer. It certainly is not going to be a party and I am in for some interesting times. I am, however, not scared and I know that this needs to be done. There is no other choice. 

Next week there is also going to be an MRI scan made of my brain to see if there is metastasis there. I am very much afraid that there is and that this is what the problem was with my eye. I see on photos of myself that my right eye droops a bit. All I can do is hope that this is not true and that nothing will be found. 

My sister was on a mission, and that was to find a few scarves for me for when the chemotherapy started and my hair would fall out. I was thinking of some plain square scarves, but she came over today with two large beautiful square ones that have the most wonderful colors. I took one and without looking in a mirror, tied it very elegantly around my head. It was such a success that I decided that I would not wait for my hair to fall out in bits and pieces, but that we should shave it off then and there. The Cowboy and my sister shaved it off in two stages (the Cowboy did the precision work) and now I have a bald head that is nicely wrapped in a beautiful scarf. 

Today was an exhausting day because I had to process so much information and make note of so many dates and details. It is a good thing that I am not trying to do this all by myself. I am using my very large coffee table as a work surface to keep all my papers pertaining to the cancer organized on. I still think that I am forgetting things and have to keep checking them. 

The Cowboy makes sure that there are always fresh flowers around which cheer up the living room tremendously. It is such a nice space to be in. We really do take our rest there when we get a break. I suppose I ought to go to bed now, but I like this bit of time by myself late at night. Outside there is a thunderstorm and it is very cozy in here. Regardless, I will say goodnight. 

The tricky parts

I am becoming familiar with more of the different emotional stages of living with cancer and today it was the sad, grieving stage while I have already had an angry one. No doubt these will repeat themselves and there will be others I go through. I can not yet imagine what they will be, but I am not that curious that I let loose my imagination to try to figure them out ahead of time. I can wait until they happen naturally. 

I must say, though, that while I go through such a stage, I do work out some problem or other that needs to get solved, so they can be productive as well as bothersome. It isn't all bad. But don't ask me to repeat that while I am in the depths of one, because I will deny it. The good thing is that I am not on my own, but that I have the Cowboy's shoulder to cry on and that he very willingly let's me. I have told him that he doesn't need to solve anything for me, but just listen to me go on and on and so he does. 

Tyke becomes confused and tries to find comfort also, but doesn't quite know where to find it, so I have to make sure that at some point I pay attention to him and reassure him. He is more than willing to let that happen to him and have his belly rubbed. The poor animal didn't sign up for any of this to happen to him. But then again, neither did I. 

We haven't seen Gandhi since early this afternoon when my sister's dog scared the living daylights out of her and she disappeared outside somewhere. The dog has been gone for hours, but Gandhi has not yet come back. It may take a while before she does. 

When the pain medication wears off in the afternoon before it is time to take the next dose, I have discovered that I can take 1,000 mg of paracetamol and that will help in the meantime. I will discuss this with my GP when he next comes over, which should be at the end of this week. I will call the practice in the morning and make the appointment. 

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?