Sunday, 29 September 2013
Generally, I find it relatively easy to put my emotions and feelings into words. But the post I wrote yesterday really challenged me. I could not find the words to express my grief. Last night, I rediscovered a part of me that I had lost, a part that I had forgotten, I part that I had ignored. It is the way my soul connects with dance and music. I am not a dancer, nor am I a musician. When I was a child, I went to ballet class but, I was bad at it and hated it, plus I was too fat. I also had keyboard lessons and, as I said in a previous post; or on facebook, I can't quite remember now; I had never played the piano which I am now learning to play along with the ukulele. But my limited experience in dance, music, sport and self defence has taught me some valuable lessons. They taught me how to move with fluidity, or with sharpness, but most importantly, with a natural rhythm. But there was something about dance and music that I hadn't quite appreciated, that is, until last night. There is something about dancing and something about playing music that brings me into a different world. It is a world where there are no limits, it is a world where you can get lost in and still be safe, it is a world where I can be me in my rawest form, it is a world that is perfect.
I had forgotten how much I loved to dance. It was only when I decided to vary my exercise regime to include dance to work on specific muscle groups instead the standard gym routine. But something happened. Something changed. I felt myself connect and suddenly my brain wasn't in control. My emotions, my hopes and my dreams were being poured out through my dance. It was a painful but beautiful feeling. I probably looked ridiculous, but I didn't care, there was no one who could see me apart from my God. It was through the act of dance that I was able to laugh, to love, to hope and to grieve freely. In someway, I know not how, dance enabled me to give my emotions away, I was able to let go of my burden.
When I finally stopped, my intended hour of exercise had turned into two and a half hours; but for me, time had stood still, there was no concept of time in my mind. As I stopped to reflect on what had just happened, I knew that this experience was healing for my soul. It was completely unexpected, but it was beautiful. It was a precious gift that I will cherish.
Saturday, 28 September 2013
Today is day 63 which means only 37 days left to go! I had my usual date with the clinic yesterday and so far so good. On Tuesday, I was threatened with IV fluids because I wasn't drinking enough and my kidney function was off. But yesterday, those sets of results hadn't come back yet and they haven't phoned me since, which I take to mean that I'm off the hook. In my defence, drinking two to three litres a day every day is really quite hard work! I'm only little! All my other blood results are in the normal range and they are very happy with the progress.
However, this past week has been quite tough. The docs wanted me to reduce the paracetamol that I was on because the headaches that I was having hadn't occurred for a while. Reluctantly, I followed their instructions, much to my own surprise, and lo and behold, the headaches came back with a vengeance. Of course, I immediately returned to my original regime, but it was too late as far as the headaches were concerned. If I take regular paracetamol, the headaches are kept at bay, but if I stop or reduce the dose then they will come back and take longer to get rid of. Which is why, for most of this week, I have spent it in bed, completely wiped out. But, the headaches are getting better now, they are still in the background but soon I wont feel them at all.
To add to the misery of this week, I started to have menstrual pain. I feel slightly awkward talking about this because I generally don't go around announcing my menstrual cycle to the world; however, one of the things I promised myself when I started this blog was to talk openly about the hard issues, the tough issues and yes, the slightly embarrassing/taboo issues. The other reason why I'm going to let you into this world is that it is relevant to the next stage of treatment and recovery.
I've been on a tablet for the last nine months that stops the menstrual cycle; it effectively tricks your body into thinking that it is already pregnant, via hormones, so that the body doesn't ovulate again and bleed. I was on this tablet to avoid bleeding during the treatment as my blood counts were low and I would have just bled out. But last week, they took me off them completely, which is a good thing because it was time to see what state my ovarian function was in. However, having not had period pain for nine months, the experience of rapid onset period pain was especially painful, obviously the intensity of the overall pain experience was compounded by the headache factor.
Now for the technical side of things; apologies, it is slightly complicated, but I will try to write clearly and plainly as I can. When I came off the drug I had a break through bleed, hence the period pain. A break through bleed does not mean that a period has occurred. The period or menstrual cycle is the name given to a series of events that include the rise and fall in hormones, namely oestrogen and progesterone, which would lead to ovulation which is the point when the egg is realised. A break through bleed is just in response to the cessation of the drug. To put it another way, its a bleed of left over blood.
After stopping the drug, the next step is to wait and see if the periods return. If they come back, it does not mean that I am fertile, but what it does mean is that my body is producing oestrogen and progesterone which is a good thing. Conversely, if they don't restart, then those hormones will not be produced. This is bad for two main reasons. Firstly, I will go into early menopause; and secondly I will be at high risk of osteoporosis at a young age. The treatment for this is Hormone Replacement Therapy (HRT). However, it is likely that even if I am producing those hormones, I will not be producing enough of them which will mean going onto HRT anyway. I have my reservations about HRT but there is no other alternative. In the next few weeks, I will be referred to the Early Menopause Clinic to start this discussion.
This topic is one that I have tried not to think about since I made the decision not to go through egg harvesting. But, alas, it seems that the time has come to reopen this very painful can of worms. It was a hard and terrible decision to make. One of the reasons was because it felt, and to some extent still feels, like I was choosing to be infertile rather than take the risk to at least have a chance to have children of my own. I still feel numb talking about this subject because it is so overwhelming and heartbreaking. But I know as time goes by, I will start to grieve again little by little and find healing in the process.
I absolutely adore children. I know that adoption will be the way forward and I know that I will love that child completely but there is still sadness that lingers. I feel this most when I see my beautiful niece on the odd occasion. I love her and I love seeing her, I wish I could see her more. But it is always bitter sweet. That is when the emotion rises, even just thinking about her brings me to tears as it has done now. I find myself shouting at God, telling Him that He knows perfectly well how much I love children. He knows I would teach them about Him, introduce them to Him and His great Love. He knows that I would be a good mother. So why is it that He would see fit to take that gift away from me at such a young age and allow child abusers to have babies left, right and centre?
I was thinking about all the women in the Bible who were barren. For quite a number of them, God blessed them with children when all hope was lost. People say this too me to try and encourage me. It doesn't, in fact it's rather annoying. This is for two reasons. Firstly, I already know and believe that God works against all the odds. Secondly, having a blood born child is not my idol. I have submitted my life and my will to God because I trust Him and I know, from a lot of experience that His way is the best way. So if it is His will for me to be barren, then so be it. It hurts, but I trust Him way more than it hurts.
I bring up these Biblical women because there is another side to the story that I think is overlooked. When the women are sorrowful, it is always, I think, in relation to not being able to give their husband a child, not the fact that they themselves are barren. Invariably, I would take the perspective that their sorrow was mainly due to their status and identity as a women that was prominent in that time and culture. But I see it differently now. I feel their pain. I mourn with them. It is not about status or womanhood. It's not about carrying on the family name. I don't know what it is, I can't put my finger on it. I then wondered to myself if I would think of or love my husband less if the situation was reversed. Absolutely not. But somehow, the thought of not being able to give my husband a child is equally as painful as knowing that I can't have any children. I don't know but maybe it's something to do with, what has happened to me is also affecting him. But then, isn't that what happens in marriage; you are one? Maybe is a small reflection of the part of me that wants to protect others from the hurt and pain that has so burdened me; I don't want to go through this, but I certainly don't want anyone else to be affected because of this. Maybe it's knowing that I wont be able to share a child with him? I don't know. I'm just speculating, but not too well, its hard to see clearly through the tears.
Even though the pain is still present now and intense; deep down, I think I know the answer. Adoption is at the centre of Gods' heart. We are His children because He adopted us. I've always asked Him to share more of His heart with me, and haven't always like the result. Maybe what has happened is bigger than I can see right now, maybe the plan is much bigger than what my current circumstances are at the moment. Maybe God will give me a house full of children; each one saved from an abusive home and redeemed in a loving family. Maybe, just maybe. What do children who have a terrible start to life need? The need love. They need to be taught and introduced to God and His love for them. What they need is a good mother.
Thursday, 19 September 2013
In the grand scheme of things, I have never been much of a rule breaker, or maybe a more accurate portrayal is that I have never considered myself to be much of a rule breaker. But today, I found myself in a battle of wills. It is the battle of Doctor Vs Stari. Do I do what the doctor has said or do what I want to do. It is a battle I have faced many times before, but today was different. This is day 55 post transplant, and my health has improved dramatically since day 1. I'm at the stage where my neutroblinkits and my lymphoblankits are within the normal range. This rapid recovery has been unexpected as you would normally expect to see these kind of results closer to the day 100 mark. So the docs say, even though my counts are up, I should still avoid crowds of people until day 100. Now here's the dilemma. My counts could probably manage crowds but the docs are stating the guidelines to me. I wont to go out, but I don't want to go out just to end up back in hospital. I want to go out but its been such a long time since I've been out on my own that I'm actually scared of going out in case something happens to me.
So this is the debate that I had in my head today which you are privy to. "I want to go to the post office and the shop. But it's raining. You have a coat and an umbrella and your skin is waterproof. But am I allowed to get on the bus? There are people on the bus. There are people in the hospital where you go twice a week you plonker! Does my new bus pass give me free travel or reduced travel? Just ask the driver. But I don't want to look stupid. You are stupid! Plus the students have arrived and they will undoubtedly look more stupid than you when it comes to bus travel. Maybe I should walk? But it's quite far and I've not walked that distance outside in 'harsh' terrain before. Ok. Compromise. Take the bus at a time when its quite there and back. If you see anyone who is 'diseased' slyly cover your nose and mouth with hand or scarf, turn your back and remember to sanitise when you get home. Sounds like a plan. Oh. Wait. The school kids are about to be let out. They are little bug incubators, who knows what their harbouring! Plan foiled. Maybe I'll go tomorrow. Or maybe not. Tomorrow is clinic day. Sigh.
Like most people I would take risks if I didn't have much to lose, but I do not enjoy taking risks when the stakes are high. When I watch Deal or No Deal on the telly I always find myself giving in at least two or three box opens than the optimum value. In this situation, the stakes are very high for me. Under no circumstances do I wish to go back into hospital as an inpatient. But am losing out? Am I being over cautious? Am I encouraging behaviour in me that is so risk adverse it is unhealthy? One of the great blessings about living with people is that they can keep an eye on me. Even though they feel like they are being overbearing, I receive it with good will and it is definitely needed. I have come to realise, albeit slowly, that my judgement is impaired. To have have someone advise me takes away the stress of having to logically work it out and arrive at the wrong conclusion. It is easy to start to believe that the docs make these rules out of spite or even just to make their own lives easier. This thought pattern reminds me of how a child responds when the law is laid down by a parent. But the parent does so out of love, even if that does mean disciplining/punishing the child. Maybe this is what I should remind myself when I have these debates in my head.
When it comes to rules, there are some that I know inherently to follow and some that I think I can get away with bending. I think this is true for all people, the only difference is where the boundary lines are set. For example, I know not to murder because inherently, I know it is wrong. However, some people do not hold the same view and so they murder; they don't think or maybe they don't care that it is wrong. I once saw a broadcasted interview of an american young adult who was fanatic about the Nazis and declared, in foul language, that all the Jews should be killed. This same person was then asked if he thought he was a good person and he said yes. My point is that we judge good and bad by our own standards and commonly compare ourselves to others saying at least I've never killed anyone, that makes me better than them.
I would say, and I think most people would also confirm, that I am a good person. However, the following examples might cast a shadow of doubt in your mind. When I see the sign in the library that says no talking and no food and drink, I can safely say that I have broken that rule many more times than I have obeyed it. This doesn't seem so bad when you compare it with a rule like murder, however, its morality takes an interesting twist when the motives are exposed. So why don't I follow this rule? I guess its because I'm selfish and don't care if I disturb others and, even though I always tidy up after myself, who cares if the cleaners have to hover up a few extra crumbs? So basically, it comes down to the fact that I'm selfish. That doesn't really paint me in a good light. Surely a good person isn't selfish? I tell lies, but that is to keep the peace or protect myself. No, it's because I'm a coward and proud and wont tell the truth because it causes trouble for me. But what about the odd white lie? Surely that isn't so bad, in fact, I'm protecting the other person. Well, proverbs 27:6 says that "faithful are the wounds of a friend; but kisses of an enemy are deceitful". When you think about that properly, you know its true. It is better to tell someone kindly the truth, than allow them to be continually deceived. I lack integrity and humility; surely these are not the characteristics of being a good person? But I'm just human. That's just another way of saying I'm just bad. The truth hurts.
The point is that even though people perceive me to be good, probably by the things that I do, I am not a good person. For the sake of argument, say we go down the path of good deeds outweigh bad deeds, bearing in mind that motives and thoughts are counted becauses they are part of us and they are the predecessor to action; then if my good deeds outweigh the bad then I'm good. I would suggest, however, that no matter how saintly I behave, my bad deeds will always outweigh my good deeds by a magnitude to the nth degree. Even if you only weighed the number of lies I have spoken, not the ones I've thought about, in my life, they would still outweigh all the good things I have thought and done.
Good and bad is not relative to each other nor is is it relative to other people. Take a spotless immaculate white sheet of paper. Even if the smallest drop possible of blank ink were to fall on it, it would no longer be the spotless immaculate white it once was. But it's not as bad as that other piece of paper that is almost completely black. The other paper isn't white and my paper with one spot isn't white. White is white; it is not relative. White is the set unmovable standard.
So we're all bad who break rules out of selfish ambition no matter what the cost is to others. Is that what I'm saying? There's no point beating around the bush, the answer is yes. This is how God sees us. But there is hope, you don't have to keep hold of your damaged white paper. When you believe God, Jesus will replace your damaged white paper for His immaculate white paper, every time it is damaged or you damage it yourself. When God looks at you, He will not see what you have done, but what Jesus has accomplished for you on the Cross thereby enabling you to be spotless in the sight of God. This is the Good News of the Bible.
Sunday, 15 September 2013
When I get on a train, I always try and find a window seat that is facing backwards. I like seeing what has gone by, and in some respects, what has gone by stays in focus longer than what's coming ahead and seems less threatening. Today is Day 51 post transplant and I am now over halfway through my probation period, so to speak. But what amazes me more is that this whole ordeal started on Monday 7th January 2013, with treatment starting on Monday 21st January 2013. Which means that, from the 7th January, it has been 35 weeks and 6 days, or approximately 9 months and a week.
This morning I was thinking about the day I stood up in church and told the congregation that I had cancer. It was Sunday 13th January 2013. I had only just been given the news a few days prior and I guess I was still in a state of shock. Unlike the first bout of cancer three years ago, this news was so much more devastating and unexpected. I remember thinking that I didn't want to take the treatment and that I would be happy enough to die. I was so confused. I was told from the outset that it was effectively a 50:50 chance of getting through this and I didn't want anymore pain.
During the first bout of cancer I would have never considered not taking the treatment, nor would I have considered standing in front of a large crowd and telling them the news, let alone starting a blog and publishing the information on facebook. But this time was different. In a way, I was giving my farewell speech. I wasn't convinced at all that I would make it through and so, in effect, I wanted to say goodbye now just in case. There was no positive spin that I could put on this cancer, nothing was for certain and I could not guarantee that I would come out the other end alive. When I was speaking to church, it pained me greatly, that I could not give them a message of hope. All I could say was I trust God and His will be done whatever that may be. There was no fighting spirit in me.
Looking at the journey ahead from that point was explosively daunting. Even thinking back to that point fills me with the same fear, pain and distress as before. But one thing had changed. I knew the only way to get through this was to give the reins of my life over to God. With that, came the acceptance of help and support from those around me. Three years prior, I would try as much as I could to sort things out myself, but things were very different now. I was completely dependent on God and everyone else.
I'm at the stage now where I'm being followed up by clinic and on the wards as an outpatient. I have survived but many of my comrades have not. The other day, I find out that one of us had died at 23 years of age leaving behind her little boy. Friends dying is hard, but there is one more thing that is as nearly distressing. I find it very difficult to chat to patients who have got serious and permanent complications. I met someone roughly my age in clinic, who also had a bone marrow transplant about two months before me. He has a complication that has meant that he can no longer see in his left eye and they are trying to save his right eye but it is looking bleak. I feel bad, because I know they look at me and think why did she have to have it so easy? I know this because I do the same thing when I see patients who are doing better than I am. It is a strange mix of feelings because, you are full of joy that they are getting better, but it is a bitter sweet joy because you wish you could be in their position. How then do you celebrate with someone when it causes you so much pain? When I have had good news myself, I have tried to be a bit more restrained for the sake of others who are suffering, but it is almost impossible to do so. I have on occasion, because of this, had the experience of survivors guilt. Why did he have to suffer? Why did she have to die? Why am I living and not them? To that, I have no answer.
Although my journey is still not yet complete, the picture is very different. To be honest I can scarcely believe that I am still alive. Looking back, I can see God's protective hand with me every step of the way, even through the darkest moments. I don't know if you are familiar with the Biblical story of Job, but in his story, God allows suffering to come to Job but He always draws a line to it - this far and no further. Throughout my ordeal it really felt like that for me, pain will come my way, but I will not let you be killed. You might ask how could a loving God allow so much suffering to happen to me. But my answer is simple. I do not and would not have wished to go through any of that, but the person that God has made me to be from this experience is more precious than the finest gold and I would not give up the relationship I now have with God for anything. God is good and that is always my starting point. If I waver on that, then everything is thrown into chaos. He suffers with me and is in probably more pain than I am. The world is fallen and broken. Ultimately the war has been won by Jesus Christ, but the battle still continues. I don't know if you've done this but, have you every picked up a book and read the ending first? If you have, then you know, that no matter how sticky a situation the main character gets into, even when it looks like they will surely die, you know it's going to be alright because you know that in the end, they come out victorious. I know the end of the story, so even though I may suffer now, I know that I'm safe because of Jesus Christ.
Tuesday, 10 September 2013
Firstly, an apology. I found out some good news on Friday and it only occurred to me that I should tell you all about it today - in my defence, granted a weak one, the good news was overshadowed by some terrible headaches which are now, thankfully being kept at bay by painkillers. So here it is *drum roll* the bone marrow transplant has been successful! The results from the bone marrow biopsy I had a few weeks ago shows that there are no cancerous cells and that the graft has taken. As I'm sure you can imagine, it is a huge relief to hear this news. The smoothness of the bone marrow transplant has been nothing short of a miracle, God never ceases to amaze me.
Today is day 46 post transplant and I thought i'd catch you up on what's been happening. Well, I've now moved to headingley but, you'll be glad to know, still resisting the temptation to go out all the time and have wild parties. I'm still going to hospital on tuesday and fridays for bloods and clinic. I've got a few endeavours that I'm working on at the moment; unfortunately, I can't publicly disclose their nature, so for now, I'm just going to leave you hanging. It's funny, because originally, I was only supposed to start off with three projects, but somehow they have miraculously increased to six; it really is a wonder to me how these things happen, maybe it's one of those feeding the five thousand things - but not to worry, I'm still taking it easy. In other exciting news, I'm teaching myself to play the piano and I've started off with Bach's Prelude No 1 in C Major from the Well Tempered Clavier. I've only every played the keyboard, but haven't played properly in eight years, and I've never played or read base clef before. What can I say? I like a challenge..
I'm still getting use to being on the outside. In a way, it feels like a dream, in another way it feels like a nightmare. The usual fears that I have talked about in my previous posts are still there, but don't bother me too much. But another challenge has arisen. How do I get back to being normal? Once I'm better, will I be able to get back to my usual life? But for now, I am content - I think. I am still waking up at 2am and 4am in the morning, but I have devised a clever plan to outwit and mock the sleep thief. I do a bible study during those times, topped off with listening to a sermon which, without fail, sends me off to sleep. For those of you who think that's incredibly pious, I assure you its not. It's simply a method for filling my head with something good. Plus the sermons are a much more effective sedative than the individual or cumulitive effect of codeine, morphine, zopiclone and lorazepam; but maybe with the exception of levomepromazine which sadly I'm not allowed anymore - something about making me too sleepy and happy, I dunno, I think they were just being grumpy. The down side, is that I have to listen to the same sermon two or three times to get the full content because I normally fall asleep in fifteen minutes. A wee disclaimer - I am not in anyway suggesting or endorsing that sermons are boring and they put you to sleep; I am merely using the sermons in another way for a different purpose.
The blessing and the curse of waking up in the early hours in the morning is that my mind is fully awake and I usually have my best ideas come to me or material for this blog. I was thinking last night about change, leadership, success and failure. It was a long drawn out conversation in my head but this is the summary of the conclusion I came to. The way to make change happen is to lead by example with humility, integrity, knowing your limits and a teachable spirit. The way to succeed is to first learn how to fail well. Multiple setbacks, builds up perseverance, resilience and teaches you to learn from your mistakes. If you learn to take the blows of failure and get back up again, then you will succeed at pioneering and leading change. I have been told many times in my life that I'm just chasing after the ideal and the world doesn't work that way. For some reason, this has always added more fuel to the fire for me and gave me a reason to pursue the ideal and not settle for less. You can call me a dreamer but there is one thing I know for sure. Nothing is impossible for God. The numbers of the opposition do not matter. God always counts as the majority, even when it is just God or God plus you. After all, if God is for us, then who can be against us.