Posts
I had a really good discussion in chat with darling Mo Yee. She asked how I am and although I was having lunch and got that in my cell phone instead of laptop, I replied to her... sharing 28 years old memories from her visit in Finland has been really therapeutic and has felt so good that I have sometimes had tears in my eyes, looking at all those photos... it is such a happy feeling!
I said I was somehow messed up with feelings and completely lost, unaware of what I should do. It was not that feelings would come and go and be out of my control. It was that I was desperately trying to control all negative feelings from taking over, and I felt I was losing the battle, and I was getting desperate. I was about doing things that I knew I did not want to do, that felt really difficult and that would only have been repeating old mistakes and creating misrability.
It was lucky that she came around and started asking questions. When I started putting that mess that was in my heart and head into words, I started to realize what it was about. Being in a nonverbal state, it was impossible to even understand - not to talk about analyzing and finding solutions.
Mo Yee said my medication probably affects my mood too. I am sure it does. I am going through something that I have never gone through and that is considered a very hard treatment (the cytpstates). It is killing cancer cells, if there are any, but also other cells in me, cells that my body needs. And my body has to adjust to that and recover from that - over and over again.
Then she asked if I get enough rest. Well I most certainly don't get even near enough, if not 2 hours sleep at night is considered as such. I am exhausted to such limits that I don't know what will happen. I don't even know any reason for staying awake, I just do. Sometimes I have pains, sometimes (often!) it is asthma that is keeping me awake, sometimes, like last night, nothing - I suppose I was awake because I was too exhausted to sleep.
Then we talked about the necessity to listen to our bodies and act accordingly. I am exhausted so the absolutely most important thing in my life is to rest. I am ill (caught a cold which made asthma worse which caused me to start another course of cortizone which is such a good medicine but I hate it because of what it does to me...) so I have to focus on getting well and forget about excercise.
I was afraid I'd do uncontrolled things because of all feelings that were going round in me and that did not have a proper name or cause... I was looking at completely wrong direction, not noticing that the cause to those feelings of frustration, anger, agony, uncertainty, helplessness... was what was going on in me, my body, and what was actually quite enough to cause all those feelings... and nothing that was going on around me. Nobody had caused it, not even myself - I am seriously ill and it puts me to situations that I cannot handle. Mo Yee reminded me to pray before I react to things that arise negative feelings. I did that right away and felt the difference. Instead of feeling misused and neglected and angry and whatever - I felt calm, positive, understanding, goodwilling - it is really a miracle what prayer can do. It is amazing that i DO KNOW ALL THAT - I just had gone so lost that I had FORGOT THE BASICS: prayer, rest, listening to myself and acting accordingly. And that medication can cause terrible things.
There will be yet another challenge. I will have the ct scan of the upper belly on Friday because the doctors think there is a possibility that cancer has spread to liver. I know my life is not in my own hands, it is not in the doctors' hands - I know I need not worry - and I cannot help worrying and being afraid anyway.
I know it is important to stay positive. I just don't know if anybody who has not had cancer her/himself knows how hard it is sometimes. I have been to the point where it has started to feel wishful thiking, and I have come back from there. I feel it really weary to struggle in three weeks' periods - cyto meds infusion, then three weeks pause, then lab tests, and if body has recovered, another cyto med infusion... when I think of that, it brings tears in my eyes. It feels really really awful mentally, not to talk about that it feels awful also physically. Just when I feel that I have got on my feet, there will be another infusion and I will have to start from bottom again. I cannot even explain how it feels.
But there are so many positive things too. I have awesome friends, I didn't even know how awesome before I got cancer. I could go in detail but I know many of them are really modest too and don't want to be praised publicly. I just want to know that I SEEEE every single thing that you do for me, and that they mean so much more than you can ever think about. I love you all from the bottom of my heart. I feel I don't deserve all this - this goodness - but you keep telling me that of course I do. And if I get in real trouble like today - God will send someone of you to say the right things, to ask the right questions, if I cannot do that myself. I feel like carried by so many hands, by so many prayers from all over the world that I am really privileged. It seems incredible that complete strangers are praying for me.But for some reason - and I think the reason are my friends - they are. I am overly grateful foir everything.
But easy this is not. It is everything else. I am so good in being ill, I have lots of experience - but nothing that would have helped me go through this. To this, my experience is not enough. But I am learning. ;)
Monday, November 15, 2010
Thursday, November 11, 2010
Asthma gets nasty
I have suffered the one-week-long post-treatment blues with sick feeling, head ache, odd feelings here and there, digestive discomforts and so on. Today I felt well and thought it would be a perfect day for a walk since I have developed an obsession for fresh air although I am not very skilled or in a very good condition.
SO I went out. It has started to snow, and after ca 50 meters I started to feel really odd in my head. It was something that made me think that I will fall unconscious pretty soon. But I didn't turn back, I went on. In the next street corner I was coughing my lungs out. I had to stop to cough, and stop again, and again, and nothing helped. I realized my asthma medicin was at home and not with me. But I did not turn back, I just went on walking. In the next corner, I decided to turn back, and I was considering calling my husband so that he'd come and drive me home. It just felt too ridiculous since I was not even far away from home - just that getting back there felt impossible. My breathing was really weary and it made noise not only by outhaling but by inhaling too. I don't know how I made it back home and up the stairs but I did, and I managed even to inhale the asthma medication and after a while, go and drive my little daughter home from school. Then I thought I'd go out again, since I had only walked for 10 minutes and I felt really ashamed of it, I would like to do better... but on second thoughts, my legs were almost unable to move for having done that walking with practically very little oxygen, I was trembling all over and feeling very weak and my heart was still beating extra - so that unfortunately, it is just to rest tonight.
That is the balancing I do all the time. It is essential to get as much motion as possible to beat breast cancer and prevent it from coming anew. Sometimes asthma gets so weary that motioning is impossible. And sometimes fibromyalgia adds on problems - like I think it did today, by making asthma worse than it was actually, and making walking cause more pain and fatique than would be reasonable.
But I have feelings too. I want to get well and it feels really hard to accept that my body is fighting against me. Or maybe it is telling me things I don't want to listen? Like, that I need to rest? After all, I DID some cleaning all through the morning, till noon. That counts too.
SO I went out. It has started to snow, and after ca 50 meters I started to feel really odd in my head. It was something that made me think that I will fall unconscious pretty soon. But I didn't turn back, I went on. In the next street corner I was coughing my lungs out. I had to stop to cough, and stop again, and again, and nothing helped. I realized my asthma medicin was at home and not with me. But I did not turn back, I just went on walking. In the next corner, I decided to turn back, and I was considering calling my husband so that he'd come and drive me home. It just felt too ridiculous since I was not even far away from home - just that getting back there felt impossible. My breathing was really weary and it made noise not only by outhaling but by inhaling too. I don't know how I made it back home and up the stairs but I did, and I managed even to inhale the asthma medication and after a while, go and drive my little daughter home from school. Then I thought I'd go out again, since I had only walked for 10 minutes and I felt really ashamed of it, I would like to do better... but on second thoughts, my legs were almost unable to move for having done that walking with practically very little oxygen, I was trembling all over and feeling very weak and my heart was still beating extra - so that unfortunately, it is just to rest tonight.
That is the balancing I do all the time. It is essential to get as much motion as possible to beat breast cancer and prevent it from coming anew. Sometimes asthma gets so weary that motioning is impossible. And sometimes fibromyalgia adds on problems - like I think it did today, by making asthma worse than it was actually, and making walking cause more pain and fatique than would be reasonable.
But I have feelings too. I want to get well and it feels really hard to accept that my body is fighting against me. Or maybe it is telling me things I don't want to listen? Like, that I need to rest? After all, I DID some cleaning all through the morning, till noon. That counts too.
Friday, November 5, 2010
Hair loss and new massacre Nov 5th, 2010
I am back home from the 2nd cytostate infusion. Web cam photo of course but I do look quite pale right now, a massacre going on in my body. Wanted to document that I still have my own hair although I have hair loss these days (it started yesterday) - still my hair was what all nurses came to comment on because I still have it! (I have substitutes too so I am prepared.) Used the ice cap even this time. It is supposed to prevent hair loss - works for some, doesn't work for others but does not harm and feels nice so I use it as long as it seems to be useful. Anyway, the first two weeks after the first treatment (with then ice cap on) I did not lose ONE SINGLE hair which is quite odd.
I was also told today that my eye lashes and eye brows are not going to lose, I am not going to get that medication which is driving all body hair away. Good; I was already wondering how I could make-up eye brows to which I have never done anything, and what would fake eye lashes look when fixed on with my shaky fingers - ? LOL
I took the early bus to Vaasa (113 km according to the bus fare ticket, 18, 40 €), and took a taxi back - but this time I feel a bit better and not so odd in my head than last time, that actually, I could have driven myself. But social security is paying, I pay only 9,25 € of the 140 something € taxi bill. I am getting something in refund to all tax money I have paid to this society for all these years. - The early bus leaves 5:45, which makes me stand up at 4:30 to catch it - and it is in Vaasa, precisely at Central Hospital gate, at 7:30. Then I have one hour to spend in the hospital cafe which is a lovely little place in the beautiful entrance hall and serves lots of nice treats, healthy and less healthy. I had a roll with cheese, and tea.
They had a bit difficulties getting the drop set. Firts they tried on the upper side of the hand. It hurt somewhat enormously though I am not usually sensitive to that kind of things. And it did not work either. Then came another nurse and put it on the inner side of the arm. It hurt too but less, and it worked so I said nothing. But it went on hurting all the time it was in there.Several hours.
First I get medication against feeling sick; a capsel to be had before the drop, and then some 300 ml fluid infused. Then they "wash" the tubes by running NaCl-fluid for a while, then comes the first cytostate, approximately 300 ml too. Again washing with NaCl fluid (all goes into the vein of course), then the second cytostate. The last cytostate, the third, is coloured ruby and it is eroding: if it touches the tissue, it will wear it away with chemical reaction. Therefore they add NaCl as side drop when infusing this, and therefore they also need me to say if I have any feelings at all in the arm when that infusion is done - because the vein could be broken and then it would cause damage in the tissue. It does less damage to the vein. And this one they rinse off the tubes extra carefully. Last, I get the remaining NaCl-fluid (1000 ml allthogether).
I chose to sit in an adjustable (by remote, LOL) easy chair. A young woman was sleeping a few beds away from me and snoring loudly and happily. An elderly man sat beside me in the next easy chair; he had maintaining treatment, means that his cancer, whatever it was, cannot be cured but he can live with it when he receives a cytostate treatment to keep the cancer in control. He said he had been there last time 7 months ago (I go every 3 weeks). An elderly man came with his wife, they only stayed for a little while, as long as it took to take one small dose. His voice was really bad, and he was coughing - might it have been cancer in his throat? Sounded so, because his wife was looking for support from the nurse as it appeared to be so that her husband was refusing to eat and was not taking in enough calories.
I also saw into the "suite" from where i was sitting. They took in a man who was from some department in the hospital because he came in a hospital bed and was then moved to the bed in the suite (for worse patients). He was bare skin and bones, no muscles at all. Later I heard from the breast cancer nurse whom I was seeing that in this hospital every patient is getting the best treatment there is in the world, if s/he needs it. While in Helsinki, the capital, where the patients are more, not all are allowed to have the most expensive treatments. - I have seen that: they used some radio active matter on me before the operation, and the surgeon was happy because they had it - she said that it is not always available in the world market because it is not "sexy" = it is not used in the munitions - it is not used in war technology.
Then I went to the kitchen they have there and found some roll and juice and yoghurt, and had a snack. It was already almost 6 hours since I had eaten breakfast.
Then I met the breast cancer nurse. She had already been to see me several times during the infusion. She told me about the eye brows and eye lashes and even that it is POSSIBLE to keep the own hair - that it actually happens. Well, we will see. As I said, I have substitutes...
We talked about my good luck with good friends and wonderful family, and then we talked about the kids and how they take it. Right now that is what is worrying me most. And my husband.... he is working too hard AND worrying and taking care of me... he is WONDERFUL... really a saint... and I don't know what to do to ease his burden. I try my best - and the most essential thing is to get well of course.
And I am doing my best.
Blood tests came back showing my body has some Finnish "sisu" - an amzing ability to recover from massacre of fast dividing cells. All important values had come back to normal, most had even rised from what they were.
The doctor had not been satisfied with the echo that was seen in liver. She wants to have a ct scan made to make up her mind on whether it is cancer or not. Which means that she thinks cancer is possible also in liver. Ok - if it is, then I take that too. Will find out in three weeks... I only hope that if it is cancer, it has not time to grow too much, or spread.
I was also told today that my eye lashes and eye brows are not going to lose, I am not going to get that medication which is driving all body hair away. Good; I was already wondering how I could make-up eye brows to which I have never done anything, and what would fake eye lashes look when fixed on with my shaky fingers - ? LOL
I took the early bus to Vaasa (113 km according to the bus fare ticket, 18, 40 €), and took a taxi back - but this time I feel a bit better and not so odd in my head than last time, that actually, I could have driven myself. But social security is paying, I pay only 9,25 € of the 140 something € taxi bill. I am getting something in refund to all tax money I have paid to this society for all these years. - The early bus leaves 5:45, which makes me stand up at 4:30 to catch it - and it is in Vaasa, precisely at Central Hospital gate, at 7:30. Then I have one hour to spend in the hospital cafe which is a lovely little place in the beautiful entrance hall and serves lots of nice treats, healthy and less healthy. I had a roll with cheese, and tea.
They had a bit difficulties getting the drop set. Firts they tried on the upper side of the hand. It hurt somewhat enormously though I am not usually sensitive to that kind of things. And it did not work either. Then came another nurse and put it on the inner side of the arm. It hurt too but less, and it worked so I said nothing. But it went on hurting all the time it was in there.Several hours.
First I get medication against feeling sick; a capsel to be had before the drop, and then some 300 ml fluid infused. Then they "wash" the tubes by running NaCl-fluid for a while, then comes the first cytostate, approximately 300 ml too. Again washing with NaCl fluid (all goes into the vein of course), then the second cytostate. The last cytostate, the third, is coloured ruby and it is eroding: if it touches the tissue, it will wear it away with chemical reaction. Therefore they add NaCl as side drop when infusing this, and therefore they also need me to say if I have any feelings at all in the arm when that infusion is done - because the vein could be broken and then it would cause damage in the tissue. It does less damage to the vein. And this one they rinse off the tubes extra carefully. Last, I get the remaining NaCl-fluid (1000 ml allthogether).
I chose to sit in an adjustable (by remote, LOL) easy chair. A young woman was sleeping a few beds away from me and snoring loudly and happily. An elderly man sat beside me in the next easy chair; he had maintaining treatment, means that his cancer, whatever it was, cannot be cured but he can live with it when he receives a cytostate treatment to keep the cancer in control. He said he had been there last time 7 months ago (I go every 3 weeks). An elderly man came with his wife, they only stayed for a little while, as long as it took to take one small dose. His voice was really bad, and he was coughing - might it have been cancer in his throat? Sounded so, because his wife was looking for support from the nurse as it appeared to be so that her husband was refusing to eat and was not taking in enough calories.
I also saw into the "suite" from where i was sitting. They took in a man who was from some department in the hospital because he came in a hospital bed and was then moved to the bed in the suite (for worse patients). He was bare skin and bones, no muscles at all. Later I heard from the breast cancer nurse whom I was seeing that in this hospital every patient is getting the best treatment there is in the world, if s/he needs it. While in Helsinki, the capital, where the patients are more, not all are allowed to have the most expensive treatments. - I have seen that: they used some radio active matter on me before the operation, and the surgeon was happy because they had it - she said that it is not always available in the world market because it is not "sexy" = it is not used in the munitions - it is not used in war technology.
Then I went to the kitchen they have there and found some roll and juice and yoghurt, and had a snack. It was already almost 6 hours since I had eaten breakfast.
Then I met the breast cancer nurse. She had already been to see me several times during the infusion. She told me about the eye brows and eye lashes and even that it is POSSIBLE to keep the own hair - that it actually happens. Well, we will see. As I said, I have substitutes...
We talked about my good luck with good friends and wonderful family, and then we talked about the kids and how they take it. Right now that is what is worrying me most. And my husband.... he is working too hard AND worrying and taking care of me... he is WONDERFUL... really a saint... and I don't know what to do to ease his burden. I try my best - and the most essential thing is to get well of course.
And I am doing my best.
Blood tests came back showing my body has some Finnish "sisu" - an amzing ability to recover from massacre of fast dividing cells. All important values had come back to normal, most had even rised from what they were.
The doctor had not been satisfied with the echo that was seen in liver. She wants to have a ct scan made to make up her mind on whether it is cancer or not. Which means that she thinks cancer is possible also in liver. Ok - if it is, then I take that too. Will find out in three weeks... I only hope that if it is cancer, it has not time to grow too much, or spread.
Sunday, October 10, 2010
Understanding the triple negative breast cancer
Haaa - there is a definition for everything, my breast cancer included: It is triple negative. What does it mean then? It's what I have said - no targeteed drugs to be used, lower survival rate than with the other types (approximately 1 in 4 dies of it in a few years, and if it is found spread into other organs like liver or brain, life expectancy is approximately 13 months. According to statistics, that is. I have always believed in knowing my enemy. And my life is not statistics. Against all odds I am still alive. :) )
So I have the stage-three (most aggressive) "triple negative" breast cancer, an aggressive form of the disease that disproportionally strikes younger women and Hispanic and African-Americans (and me), and is impervious to the newest treatments. Yet my tumor was found in a very early stage so that gives some hope - also it was, so it seemed, not spread yet since there was nothing in the armpit lymph nodes.If that is to proove anything. I believe it is, since I don't know about anything else.
I am studying more of it so I save the links here to have them somewhere when I have time to concentrate.
http://dailyme.com/story/2010101000000699/shedding-light-triple-negative-breast-cancer.html
http://www.baltimoresun.com/health/breastcancer/bs-hs-triple-negative-breast-cancer-20101001,0,1038153.story
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor?icid=main|main|dl3|sec1_lnk3|175568&a_dgi=aolshare_twitter
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor-2?a_dgi=aolshare_twitter
http://www.dddmag.com/news-Researchers-Image-Triple-Negative-Breast-Cancer-with-PET-42210.aspx
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=25387
http://www.congoo.com/news/addstorycomment.aspx?st=124935795&Channel_ID=22&Category_ID=262
http://www.myfoxchattanooga.com/dpp/health/Cancer-on-the-Frontlines-How-I-Beat-Triple-Negative-Breast-Cancer_09370950?utm_source=twitterfeed&utm_medium=twitter
http://www.koat.com/health/24904938/detail.html
So I have the stage-three (most aggressive) "triple negative" breast cancer, an aggressive form of the disease that disproportionally strikes younger women and Hispanic and African-Americans (and me), and is impervious to the newest treatments. Yet my tumor was found in a very early stage so that gives some hope - also it was, so it seemed, not spread yet since there was nothing in the armpit lymph nodes.If that is to proove anything. I believe it is, since I don't know about anything else.
I am studying more of it so I save the links here to have them somewhere when I have time to concentrate.
http://dailyme.com/story/2010101000000699/shedding-light-triple-negative-breast-cancer.html
http://www.baltimoresun.com/health/breastcancer/bs-hs-triple-negative-breast-cancer-20101001,0,1038153.story
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor?icid=main|main|dl3|sec1_lnk3|175568&a_dgi=aolshare_twitter
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor-2?a_dgi=aolshare_twitter
http://www.dddmag.com/news-Researchers-Image-Triple-Negative-Breast-Cancer-with-PET-42210.aspx
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=25387
http://www.congoo.com/news/addstorycomment.aspx?st=124935795&Channel_ID=22&Category_ID=262
http://www.myfoxchattanooga.com/dpp/health/Cancer-on-the-Frontlines-How-I-Beat-Triple-Negative-Breast-Cancer_09370950?utm_source=twitterfeed&utm_medium=twitter
http://www.koat.com/health/24904938/detail.html
Saturday, October 9, 2010
Doctor consultation
I realized that it has gone 6 weeks from the surgery and it means that I may go swimming again - my daughter will be delighted because meanwhile, she has not had anyone to go to the swimming hall with. Her big sister has not been interested, and because she has diabetes, I ahve not let her go with her best friend because she has some sort of problem with lack of concentration - and if someone goes swimming she needs to keep a bit focused on how our daughter is - in case her blood sugar would sink too low and she would not realize it by herself. Usually she does but in the water not always, perhaps because of the difference of the element - it burns more sugar than normal motioning.
I was surprised on how exhausted the doctor consultation made me. Since I got ill I have not been driving such distances myself very often - the central hospital is 100 km from us. I drove to the podiatrician once and she was astonished that I did - "Wow, now I can tell everyone that I have a client who comes from 100 kms distance!" LOL - and I was to the lung policlinic, and I was alone when I first went to see the surgeon and all the other specialists before the surgery but otherwise, my wonderful husband has been driving me and coming with me and he has taken care of all the practical things... and now it was about the treatments and it is never easy - and I have a lot to be considered over an average patient due to all the other conditions that I have.
I use to prepare writing down everything I want to ask the doctor about, and everything Rikard says that he wants to know too. Here the doctors are really informative, they take time to explain things and they answer questions and explain again if one does not understand it at once. I had been studying material delivered by the cancer organization and I had been reading a few books on the subject so I knew a great deal already before - but I did not know anything about the drugs. People are most concerned about the side effects and there is plenty of material about it but not so much about the drugs themselves. Rikard found a two-year-old article from a scientific publication that listed all the drugs used and all the drugs being tested - and I had copied that one and put it in my notebook to see at one glance what the doctor was talking about. (This is just to explain how excited I was, or nervous, or whatever the word - means that I was concentrating enormously). My tumor was hormone negative, fast-growing and fast-spreading one. Not to be treated with hormones, that is. Hormones would not be effective. (A pity on one hand but on the other hand I am happy - I like to remain in my own hormones unaltered, so that they may live their own life as normally as possible). I was hoping it would turn out to be HER2-protein-positive but it turned to be immune to that protein too (no receptors found) so this precise medication cannot be used either. Then the doctor had considered that it would be a two-phase treatment: first, three doses of TAXOTERE and then three doses of CEF which contains three different medications. Neither of these were on my list and I have not yet had time to find out anything about them so I cannot tell much more. I was given a patient guide to those who receiving adjuvant treatments to breast cancer, and I was taken to see the day department where the treatment is given. It looked very cosy, only a few patients at a time and each having their own nurse, doctor available all the time - felt very safe and well organized.
But it turned out there was a problem. TAXOTERE would cause problems in breathing which is not a succeeded combination with asthma, and therefore the doctors will negotiate about its safety together and make up their minds first after consulting other specialists. Again, it would be a pity to lose the most efficient drug since the tumor is already of a difficult type to be treated. On the other hand, it would also be a pity to suffocate already from the first dose (I think this is starting to be some sort of a cancer patient joking). Additionally, something in TAXOTERE also makes it that it causes extreme foot pain - and the doctor got dubious about that too because I have fibromyalgia. - If it will not be TAXOTERE the first three times, then it will be CEF all the six times; not as effective but the next-best solution. After all, nothing our Heavenly Father would not be able to solve!
I have a lot to learn about this - that I cannot know things so much on beforehand. That I have to live one moment at a time. That I have to be prepared to leave from this earth practically any minute. Anything can go wrong, as I have learned from the drugs. - I have been driving the car for so long that leaving this earth all in a sudden is not quite a strange thought to me, it has never been. ANything can happen in the traffic. any time. Still, now it is present in another way which feels a bit more close and concrete. It is not a bad feeling, just that I am trained in planning things ahead and this kind of adjusting is strange to me. As well as focusing on myself too. Suddenly it is my schedule that goes over everything else - holidays, celebrations, everything. Suddenly it is my disease that dictates the family's plans, my employer's doings, I don't even know what everything. I am not used in it. I guess no mother or amployee is.
So - the cytostates will be given in six different doses, over about 6 months' time. After that, three or four weeks again for the body to recover, and then the radial therapy for 5 - 6 weeks. And so far, I will be on sick leave at least till the beginning of December, most likely longer. My hemoglobine has been sinking again so when it is already low to begin with, I will probably be too tired to go to work anyway.
The first treatment will be on Friday next week - the 15th, which is, funny enough, the "Wear Pink" Day as this month is Breast Cancer Awareness Month. Funny - I think I will be wearing pink that day, having at least the colour to cheer me up if it gets too tough otherwise. I don't have to drive myself, I will be paid a taxi by the social security - the doctor will write a certificate for me for that. That is such luxury! And something I am not used to, either.
Life goes on.
I was surprised on how exhausted the doctor consultation made me. Since I got ill I have not been driving such distances myself very often - the central hospital is 100 km from us. I drove to the podiatrician once and she was astonished that I did - "Wow, now I can tell everyone that I have a client who comes from 100 kms distance!" LOL - and I was to the lung policlinic, and I was alone when I first went to see the surgeon and all the other specialists before the surgery but otherwise, my wonderful husband has been driving me and coming with me and he has taken care of all the practical things... and now it was about the treatments and it is never easy - and I have a lot to be considered over an average patient due to all the other conditions that I have.
I use to prepare writing down everything I want to ask the doctor about, and everything Rikard says that he wants to know too. Here the doctors are really informative, they take time to explain things and they answer questions and explain again if one does not understand it at once. I had been studying material delivered by the cancer organization and I had been reading a few books on the subject so I knew a great deal already before - but I did not know anything about the drugs. People are most concerned about the side effects and there is plenty of material about it but not so much about the drugs themselves. Rikard found a two-year-old article from a scientific publication that listed all the drugs used and all the drugs being tested - and I had copied that one and put it in my notebook to see at one glance what the doctor was talking about. (This is just to explain how excited I was, or nervous, or whatever the word - means that I was concentrating enormously). My tumor was hormone negative, fast-growing and fast-spreading one. Not to be treated with hormones, that is. Hormones would not be effective. (A pity on one hand but on the other hand I am happy - I like to remain in my own hormones unaltered, so that they may live their own life as normally as possible). I was hoping it would turn out to be HER2-protein-positive but it turned to be immune to that protein too (no receptors found) so this precise medication cannot be used either. Then the doctor had considered that it would be a two-phase treatment: first, three doses of TAXOTERE and then three doses of CEF which contains three different medications. Neither of these were on my list and I have not yet had time to find out anything about them so I cannot tell much more. I was given a patient guide to those who receiving adjuvant treatments to breast cancer, and I was taken to see the day department where the treatment is given. It looked very cosy, only a few patients at a time and each having their own nurse, doctor available all the time - felt very safe and well organized.
But it turned out there was a problem. TAXOTERE would cause problems in breathing which is not a succeeded combination with asthma, and therefore the doctors will negotiate about its safety together and make up their minds first after consulting other specialists. Again, it would be a pity to lose the most efficient drug since the tumor is already of a difficult type to be treated. On the other hand, it would also be a pity to suffocate already from the first dose (I think this is starting to be some sort of a cancer patient joking). Additionally, something in TAXOTERE also makes it that it causes extreme foot pain - and the doctor got dubious about that too because I have fibromyalgia. - If it will not be TAXOTERE the first three times, then it will be CEF all the six times; not as effective but the next-best solution. After all, nothing our Heavenly Father would not be able to solve!
I have a lot to learn about this - that I cannot know things so much on beforehand. That I have to live one moment at a time. That I have to be prepared to leave from this earth practically any minute. Anything can go wrong, as I have learned from the drugs. - I have been driving the car for so long that leaving this earth all in a sudden is not quite a strange thought to me, it has never been. ANything can happen in the traffic. any time. Still, now it is present in another way which feels a bit more close and concrete. It is not a bad feeling, just that I am trained in planning things ahead and this kind of adjusting is strange to me. As well as focusing on myself too. Suddenly it is my schedule that goes over everything else - holidays, celebrations, everything. Suddenly it is my disease that dictates the family's plans, my employer's doings, I don't even know what everything. I am not used in it. I guess no mother or amployee is.
So - the cytostates will be given in six different doses, over about 6 months' time. After that, three or four weeks again for the body to recover, and then the radial therapy for 5 - 6 weeks. And so far, I will be on sick leave at least till the beginning of December, most likely longer. My hemoglobine has been sinking again so when it is already low to begin with, I will probably be too tired to go to work anyway.
The first treatment will be on Friday next week - the 15th, which is, funny enough, the "Wear Pink" Day as this month is Breast Cancer Awareness Month. Funny - I think I will be wearing pink that day, having at least the colour to cheer me up if it gets too tough otherwise. I don't have to drive myself, I will be paid a taxi by the social security - the doctor will write a certificate for me for that. That is such luxury! And something I am not used to, either.
Life goes on.
Tuesday, October 5, 2010
Managing the daily walk is really challenging these days when fibro makes muscles stiff - but so far it has been half an hour each day, and the weather has been really fine so I think after all I feel great about the walks - I feel that I HAVE TO go and walk to feel that it is me who is in charge of my life and doings, NOT fibro, NOT cancer...
Even a longer walk today! :)
Even a longer walk today! :)
Hair loss, cyto
In case the cytostates that I will be getting will cause me hair loss, I have thought of cutting my hair a lot shorter than it has been for 40 years, in advance. Must feel odd - and fun! :)
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