The beginning of this week saw me feeling on top of the world and feeling good, positive and productive. To the extent that I have decided to look forward to the 2 weeks in between treatments where I feel physically well.
After an extremely bad fatigue day yesterday, I am not feeling so positive today. It's a bit of everything that has been chipping away at the old block of positivity. Firstly, I now have 3 people whom I consider to be my bosom buddies, as they are in the same position of treatment as me, and/or in the position of "been there, dun that". All 3 have had bad news since I last chatted to them. All 3 still show signs of positivity and friendliness towards chemo. It made me realise just how serious and silent this killer disease is. It has also shown me how much I am lacking in my faith of the chemo. I just don't know how to get there. To that place where I feel that chemo is saving my life.
Secondly, I feel the effects of not writing. The fact that I originally wanted to use up the time on fun projects, did not happen. Instead a job came in, which I should be grateful for, but I am rather feeling resentful towards because of the fact that it is using up my precious time and forcing me to do things I am not enjoying. It is a "hurry up and wait" job. When the "hurry up" part comes in, I have no energy to do it, thus creating what feels like the onset of procrastination.
Thirdly, all the weight I encouragingly lost from giving up the booze, is slowly piling back on ... thanks to chemo. It seems that I am putting on 2kg per treatment. If this is true, then FFS, I will have an extra 16kgs to lose at the end, on top of my 14kg I was doing quite nicely losing. The physiotherapist tried to encourage me yesterday when she said that it is a good thing to put on weight. When my immune system is really down, then I will have reserves to feed on. I think it would have been more encouraging if she were in shape herself. She was grossly overweight. But shame, she was very sweet and may actually have a point - despite the fact that I have to face not fitting into my clothes on a daily basis. And I certainly don't want to go shopping for "fat clothes".
The picture I posted today is actually a joke, I have not really been eating any more than usual since I was told that the steroids they are giving me is not enough to warrant the healthy appetite I experienced during my first round of chemo.
My bald head continues to pose as a threat to some people. Often I forget I am bald and when someone new visits (like a supplier or something), they have that expression of "OMG, how do I hide my reaction" look on their face. I have wondered if it is subconsciously affecting me as I seem to be isolating a bit lately. Last night I even opted to look after Jordan because it is a school night (rather than get Tutu to sleep over, which she normally does on a weekly school-night basis) rather than go out with a group of friends for dinner. Hil ended up going on her own. But then again, I was fatigued and not fit for human consumption, so why put anyone else through that energy-drain.
On the bright side, Jordan is back to normal and the routine implemented since school holidays is steadily underway. The problem all started when he refused to do his work at school. We have not gotten to the underlying reason, but I was a little hurt to find out (quite by chance) that the subject he refused to work on was about "My family". I would love to conveniently blame this on cancer, but if the truth be told, sometimes parenting is so challenging that I often wonder if we are fucking up. But it is more than likely due to the fact that he wasn't feeling very warm toward us on that particular day because of the stringent new routine in place that he is rebelling against.
Round 3 of chemo tomorrow with blood tests today ... aaarrrggg!!! If only the song "onward christian soldiers, marching into war" could do it for me (.)(.)
Thursday, January 28, 2010
Friday, January 22, 2010
All good things ... expand ... not come to an end
I am battling to write lately. I don't feel as committed to this blog like I have been since the beginning. I feel that daily postings is going to be a thing of the past.
Quite frankly, I have different things I want to expand on and/or worry about - more than cancer. Right now, our biggest concern is Jordan's behavior - he is testing boundaries left, right and centre and it is completely exhausting. He does have a lot to cope with at present - new grade with a whole new ball game of harder work, new teacher much stricter to what he has ever known, me and the unpredictablity that lies ahead as well as his conflicting feelings of the NOW. He is playing out big time and it is hard to get through to him. This is where our main focus is going to be for now.
I started making posts on MyPicanninJordan blog - this could help counteract the immediate challenge as it takes me to the good points and memories of Jordan.
As for my cancer - I live with the disease on a daily basis, but my journey and experiences is not all about this disease. This is where I need to expand, as I am finding it difficult to make a post on the subject when I have not had an experience relating to it. By not making a post however, I risk losing a memory that I want noted. So for now, I will commit to a weekly or bi-weekly post - infact whenever the mood or experience has something to say - but I will not let it go longer than a week, for my own sake.
My expansion, and new self-made projects that I am working on is taking me to where I want to and need to be. That is working on my other recovery in a way that will end up helping other people. This is the next step of recovery for me - keeping what we have by giving it away. Although this project is going to end up being very lucrative, it still feels like a part of a "service-role" for me. So watch this space in 2011 when my efforts will be launched.
Synchronicity still remains a big part of my life. On Saturday 23 January I will be 18 months clean. This is a recognizable milestone in recovery. It was only yesterday I was wondering which meeting I should go to - to collect my "little black number" key-ring. During the day I got an email from a recovery friend asking for help on a specific subject that I know lots about. So my celebration was chosen for me, which includes me having to give a share at a specific meeting that has a lot of newcomers. Service, service, service ... and it feels good. It also felt like an answer from God about my recent frustrations and confusions of "where to from here?" Which, has led me to making a decision that now feels like the right path.
On top of that - I still am in regular contact with Oriah (oh yes, we are on a first name basis now). In Zimbabwe, we were taught to show our respect to others by calling them Mr and Mrs unless they approved otherwise. It is a little old fashioned these days, but I still hold those "respect values". However, it is unlikely I would call her Mrs Mountain Dreamer or Mrs House (her real name), but when referring to her, I would normally, out of respect, say her full name ... but no ... we are one-to-one now baby :-). The fact that she wrote this to me yesterday "Laurie, congratulations - on sobriety and on opening your heart to yourself. Yes!" is another confirmation of a prayer answered - so it is all good and I am feeling complete gratitude (.)(.)
Quite frankly, I have different things I want to expand on and/or worry about - more than cancer. Right now, our biggest concern is Jordan's behavior - he is testing boundaries left, right and centre and it is completely exhausting. He does have a lot to cope with at present - new grade with a whole new ball game of harder work, new teacher much stricter to what he has ever known, me and the unpredictablity that lies ahead as well as his conflicting feelings of the NOW. He is playing out big time and it is hard to get through to him. This is where our main focus is going to be for now.
I started making posts on MyPicanninJordan blog - this could help counteract the immediate challenge as it takes me to the good points and memories of Jordan.
As for my cancer - I live with the disease on a daily basis, but my journey and experiences is not all about this disease. This is where I need to expand, as I am finding it difficult to make a post on the subject when I have not had an experience relating to it. By not making a post however, I risk losing a memory that I want noted. So for now, I will commit to a weekly or bi-weekly post - infact whenever the mood or experience has something to say - but I will not let it go longer than a week, for my own sake.
My expansion, and new self-made projects that I am working on is taking me to where I want to and need to be. That is working on my other recovery in a way that will end up helping other people. This is the next step of recovery for me - keeping what we have by giving it away. Although this project is going to end up being very lucrative, it still feels like a part of a "service-role" for me. So watch this space in 2011 when my efforts will be launched.
Synchronicity still remains a big part of my life. On Saturday 23 January I will be 18 months clean. This is a recognizable milestone in recovery. It was only yesterday I was wondering which meeting I should go to - to collect my "little black number" key-ring. During the day I got an email from a recovery friend asking for help on a specific subject that I know lots about. So my celebration was chosen for me, which includes me having to give a share at a specific meeting that has a lot of newcomers. Service, service, service ... and it feels good. It also felt like an answer from God about my recent frustrations and confusions of "where to from here?" Which, has led me to making a decision that now feels like the right path.
On top of that - I still am in regular contact with Oriah (oh yes, we are on a first name basis now). In Zimbabwe, we were taught to show our respect to others by calling them Mr and Mrs unless they approved otherwise. It is a little old fashioned these days, but I still hold those "respect values". However, it is unlikely I would call her Mrs Mountain Dreamer or Mrs House (her real name), but when referring to her, I would normally, out of respect, say her full name ... but no ... we are one-to-one now baby :-). The fact that she wrote this to me yesterday "Laurie, congratulations - on sobriety and on opening your heart to yourself. Yes!" is another confirmation of a prayer answered - so it is all good and I am feeling complete gratitude (.)(.)
Wednesday, January 20, 2010
How childish
I survived yesterday's fatigue that happened to last the whole day, even though I kept promising myself every 5 minutes that I was going to go back to bed. It must be the "white blood cell drop" that they talk about that hits around day 10.
The thing is, I am working on a project that I am thoroughly enjoying. It's regarding that idea I had a couple of days ago in the early hours of the morning. It is starting to take shape now as I put action to it. It helps a lot that this project takes care of 3 of my goals for 2010 and is fun to do with very little energy required.
So now, this 45 year old woman has a body of contradiction. New born head, 20 year old tits and 10 years old elsewhere. It gives a whole new meaning to Jack Black's statement of "never underestimate the power of the eyebrow". Lone survivor, together with dem eyelashes, so far. Oh God, I hope they survive until the end. I am led to believe that they may start thinning after the 4th treatment.
I certainly don't want to be taking my family doctor's advice of the early days regarding my eyebrows. He reckons, "just go with the mood, if you are feeling angry then draw Nike eyebrows that gives you the frown look. If you want the surprised look then turn the Nike ticks upside down". Great help he was!! It was funny at the time, but I can't see myself laughing when the time comes (.)(.)
The thing is, I am working on a project that I am thoroughly enjoying. It's regarding that idea I had a couple of days ago in the early hours of the morning. It is starting to take shape now as I put action to it. It helps a lot that this project takes care of 3 of my goals for 2010 and is fun to do with very little energy required.
So now, this 45 year old woman has a body of contradiction. New born head, 20 year old tits and 10 years old elsewhere. It gives a whole new meaning to Jack Black's statement of "never underestimate the power of the eyebrow". Lone survivor, together with dem eyelashes, so far. Oh God, I hope they survive until the end. I am led to believe that they may start thinning after the 4th treatment.
I certainly don't want to be taking my family doctor's advice of the early days regarding my eyebrows. He reckons, "just go with the mood, if you are feeling angry then draw Nike eyebrows that gives you the frown look. If you want the surprised look then turn the Nike ticks upside down". Great help he was!! It was funny at the time, but I can't see myself laughing when the time comes (.)(.)
Tuesday, January 19, 2010
Laughter is the best medicine
I'm feeling a little wacked this morning, although I think it is more due to a late night than anything else. I can't feel the difference between fatigue and late nighters. 10 minutes with "morning Jordan" is enough to wake anyone up though.
I am pleased that I got through a very productive day yesterday and accomplished everything I set out to do. I even got to a meeting last night. The first with no hair, but I wasn't brave enough to go "Adam & Eve". I did show my friend Michelle the new look on the way to the meeting, to which she thought it looked absolutely fine. But, when I offered to show another friend, he said "no please don't take the bandanna off!!" It made me realise that not only do I have these awkward feelings of exposure, but so do other people. I wonder why that is? What makes people uncomfortable to have to face something out of the ordinary? Well it certainly did a lot for self-confidence!! Luckily I am not the type of person who gets stuck in a place that worries too much about what other people think, well I never used to be!!
My hand veins are aching. The hand where the chemo needle goes in. They still look pumping, so hopefully this isn't the start of their downhill. I don't want to be that person where they have to prick 13 times before they can find a vein. And, I definitely don't want a stint in my chest.
I had such a nice visit from my friend Chantal yesterday. OMG, did she make me laugh with her rendition of the interview she had just been on. To the extent that my tummy and cheeks hurt and the tears were rolling. It is true, laughter is the best medicine and it gave me that extra bit of energy boost that one always needs during the afternoon slump (.)(.)
I am pleased that I got through a very productive day yesterday and accomplished everything I set out to do. I even got to a meeting last night. The first with no hair, but I wasn't brave enough to go "Adam & Eve". I did show my friend Michelle the new look on the way to the meeting, to which she thought it looked absolutely fine. But, when I offered to show another friend, he said "no please don't take the bandanna off!!" It made me realise that not only do I have these awkward feelings of exposure, but so do other people. I wonder why that is? What makes people uncomfortable to have to face something out of the ordinary? Well it certainly did a lot for self-confidence!! Luckily I am not the type of person who gets stuck in a place that worries too much about what other people think, well I never used to be!!
My hand veins are aching. The hand where the chemo needle goes in. They still look pumping, so hopefully this isn't the start of their downhill. I don't want to be that person where they have to prick 13 times before they can find a vein. And, I definitely don't want a stint in my chest.
I had such a nice visit from my friend Chantal yesterday. OMG, did she make me laugh with her rendition of the interview she had just been on. To the extent that my tummy and cheeks hurt and the tears were rolling. It is true, laughter is the best medicine and it gave me that extra bit of energy boost that one always needs during the afternoon slump (.)(.)
Monday, January 18, 2010
Pants to the ground
I feel 100% today. Infact, I have been feeling on top form for the last couple of days already. Had a great weekend relax mainly spent by the pool braaing with friends and lots of lovely reading. I even forget that I am bald most of the time. Mostly, I am comfortable with myself, but I do get the odd fright when I pass the mirror still.
Today I am going to make every effort to put in a good days work and be productive. It's like writing - some days I don't feel like it, but then I remember a quote I read many years ago - "Don't wait to find inspiration before you write, just write and inspiration will find you" - so let's hope the same applies with work. I generally enjoy working, so it shouldn't be a major problem. It's just the energy levels that are dodgy and let me down - but with all the resting I have been doing, hopefully I am fully recharged.
A challenge that still remains for me is this nagging thought that I am already cancer-free. I honestly don't feel like I have cancer and nobody can verify this fact. Even after all the treatment that is recommended, there is nothing in the end that will confirm this. Everything is left up to the patient to self-diagnose. No blood test, no X-Ray, no doctor can confirm where I am at now or in the future. When you still have a tumor, you can at least see the progress of what chemo is doing by the shrinking. In my case, it is all guess-work. I am not complaining or unhappy with the route I have taken (op first, then chemo), I just have these nagging doubts that I have cancer.
I also don't want to get "canceritis" - always on full alert of symptoms for the rest of my life because of it being my responsibility to self-diagnose. You get a headache and want to hypochondriach-tily go to the doctor. Chemo and radiotherapy, on the other hand can cause permanent, irreversible damage and effects to the body. Think about it, radiation is not good for anybody, which is why radiographers take every effort to leave the room during x-rays. I do believe it kills the cancer cells, but it dam well kills everything else in its path, forever. All it takes is for the radiation to be slightly off-mark, and BAM, you are fucked for life. My doctor visits in the future will more than likely be related to chemo and radiation-damage more than cancer scares. This is not a comforting thought at all.
Although it doesn't sound like it, I am actually in quite a peaceful, serene state at the moment. I have been doing a lot of internal reflecting and contemplating. I am not forcing myself to reflect, it is happening naturally and is proving to be quite comforting.
I'm still finding TV to be quite intrusive, especially whilst I am in this state. I must admit though, I did enjoy watching the start of American Idols last night but do wish I could get that song off my mind ... "Pants to the ground, Pants to the ground, looking like a fool with my pants to the ground" - not sure what the title of that song is (.)(.)
Today I am going to make every effort to put in a good days work and be productive. It's like writing - some days I don't feel like it, but then I remember a quote I read many years ago - "Don't wait to find inspiration before you write, just write and inspiration will find you" - so let's hope the same applies with work. I generally enjoy working, so it shouldn't be a major problem. It's just the energy levels that are dodgy and let me down - but with all the resting I have been doing, hopefully I am fully recharged.
A challenge that still remains for me is this nagging thought that I am already cancer-free. I honestly don't feel like I have cancer and nobody can verify this fact. Even after all the treatment that is recommended, there is nothing in the end that will confirm this. Everything is left up to the patient to self-diagnose. No blood test, no X-Ray, no doctor can confirm where I am at now or in the future. When you still have a tumor, you can at least see the progress of what chemo is doing by the shrinking. In my case, it is all guess-work. I am not complaining or unhappy with the route I have taken (op first, then chemo), I just have these nagging doubts that I have cancer.
I also don't want to get "canceritis" - always on full alert of symptoms for the rest of my life because of it being my responsibility to self-diagnose. You get a headache and want to hypochondriach-tily go to the doctor. Chemo and radiotherapy, on the other hand can cause permanent, irreversible damage and effects to the body. Think about it, radiation is not good for anybody, which is why radiographers take every effort to leave the room during x-rays. I do believe it kills the cancer cells, but it dam well kills everything else in its path, forever. All it takes is for the radiation to be slightly off-mark, and BAM, you are fucked for life. My doctor visits in the future will more than likely be related to chemo and radiation-damage more than cancer scares. This is not a comforting thought at all.
Although it doesn't sound like it, I am actually in quite a peaceful, serene state at the moment. I have been doing a lot of internal reflecting and contemplating. I am not forcing myself to reflect, it is happening naturally and is proving to be quite comforting.
I'm still finding TV to be quite intrusive, especially whilst I am in this state. I must admit though, I did enjoy watching the start of American Idols last night but do wish I could get that song off my mind ... "Pants to the ground, Pants to the ground, looking like a fool with my pants to the ground" - not sure what the title of that song is (.)(.)
Friday, January 15, 2010
Baby step expose
I figured that it might be a good idea to work with what I have. I mean, let's be honest, fat looks so much better brown than white and bald looks so much better exposed than dooked. With this in mind, I decided to go public and do the "Sinead O'Connor" expose at a shopping centre.
At first, I was a little shy and asked Hil not to leave me. Normally she is unable to sit still for more than 5 minutes and goes off shopping whilst I finish my coffee or read the newspaper. Today, she kindly just fidgeted at the table until we were finished, and then we did the bank thing and left.
I did get the odd glare, but I tried not to show my shyness and walked with my head held high. I think it might be worse when I bump into someone I know. Baby steps for now and before you know it ... I will be flaunting it man!!! Strutting my thing with hips a-swingin and a-swaying. The brown blubber will be hidden though. :-)
I got such a nice chart from a new friend Karen. She is also going through the same thing as me (in Jozi). Karen created a chart/game with a hole bunch of sick and sad looking emoticons - she calls them FACC's (Fucking Alien Cancer Cells). Then there are a bunch of pink daisies that you cover the FACC's with each passing day (each daisy gets a name of someone who has supported us through this dreadful time).
That's the one cool thing about this journey. There is almost like a fraternity amongst us patients who just want to help each other. Like I have mentioned before, there seems to be a bond that gets formed as we relate to each others suffering and hoping. Awesome I tell you.
Feeling so much better today - only took one puke pill. The milder one called Clopaman - I will never forget the name of this pill as it sounds like "klap hom man" ... so it is no surprise that I have the urge to say as I swallow them "klap hom bokkie, klap hom" ... Afrikaans chemo lounges make me think the weirdest things! (.)(.)
At first, I was a little shy and asked Hil not to leave me. Normally she is unable to sit still for more than 5 minutes and goes off shopping whilst I finish my coffee or read the newspaper. Today, she kindly just fidgeted at the table until we were finished, and then we did the bank thing and left.
I did get the odd glare, but I tried not to show my shyness and walked with my head held high. I think it might be worse when I bump into someone I know. Baby steps for now and before you know it ... I will be flaunting it man!!! Strutting my thing with hips a-swingin and a-swaying. The brown blubber will be hidden though. :-)
I got such a nice chart from a new friend Karen. She is also going through the same thing as me (in Jozi). Karen created a chart/game with a hole bunch of sick and sad looking emoticons - she calls them FACC's (Fucking Alien Cancer Cells). Then there are a bunch of pink daisies that you cover the FACC's with each passing day (each daisy gets a name of someone who has supported us through this dreadful time).
That's the one cool thing about this journey. There is almost like a fraternity amongst us patients who just want to help each other. Like I have mentioned before, there seems to be a bond that gets formed as we relate to each others suffering and hoping. Awesome I tell you.
Feeling so much better today - only took one puke pill. The milder one called Clopaman - I will never forget the name of this pill as it sounds like "klap hom man" ... so it is no surprise that I have the urge to say as I swallow them "klap hom bokkie, klap hom" ... Afrikaans chemo lounges make me think the weirdest things! (.)(.)
Thursday, January 14, 2010
Girl Power
The sickness is definitely subsiding, I just wish the metallic taste in my mouth would go with it. The motivation to accomplish something productive is very much deep in the heart of Lostville. One would think that the 2 would be found together!
One thing I have discovered with being bald is that, being gay, I have got a full license now to really go "diesel dyke". Yet, I have never felt more feminine in my life. I wonder if they put something in my mooty? I've become a real girl of late. Crying, emotional, pinkie pointed up as I drink my tea. Okay, it hasn't gone as far as wanting to invite you all to a tupperware party to do the girl-gossip thing, or to go out and purchase a whole wardrobe of frilly frocks, but my femininity is very much alive and well, and it is refreshingly comfortable.
My bald head is also attracting a lot of welcomed affection. Hil kisses my crown every time she passes it. Makes me feel like a princess wearing my tiara (girl evidence again!!) or the halo being shined. Every day there is something new that someone finds on my head. Apparently I have a few faint freckles at the top, but then again it could also be dirt.
Jordan also has some comment to make every so often. Last night, with the weather being in the 30's, we had the fan on in the lounge. Jordan wanted to see how our hair would go when the fan was on full blast. When it was my turn, it was a case of "Your turn mom" looking at my head he embarrassingly said "oh ja, I forgot" ... what a laugh we all had as it was a genuinely innocent oops.
What to do today?? It's silly to get stuck into work when it is already Friday tomorrow, isn't it?? ... hmmm ... I'm definitely not going for a swim in the sea. The waters are shark infested, and these sharks seem to have a taste for Zimbabweans. Perhaps today is a good time to google holiday destinations and plan something for the later part of this year. Yeah ... that would do it, roll on "better" days (.)(.)
One thing I have discovered with being bald is that, being gay, I have got a full license now to really go "diesel dyke". Yet, I have never felt more feminine in my life. I wonder if they put something in my mooty? I've become a real girl of late. Crying, emotional, pinkie pointed up as I drink my tea. Okay, it hasn't gone as far as wanting to invite you all to a tupperware party to do the girl-gossip thing, or to go out and purchase a whole wardrobe of frilly frocks, but my femininity is very much alive and well, and it is refreshingly comfortable.
My bald head is also attracting a lot of welcomed affection. Hil kisses my crown every time she passes it. Makes me feel like a princess wearing my tiara (girl evidence again!!) or the halo being shined. Every day there is something new that someone finds on my head. Apparently I have a few faint freckles at the top, but then again it could also be dirt.
Jordan also has some comment to make every so often. Last night, with the weather being in the 30's, we had the fan on in the lounge. Jordan wanted to see how our hair would go when the fan was on full blast. When it was my turn, it was a case of "Your turn mom" looking at my head he embarrassingly said "oh ja, I forgot" ... what a laugh we all had as it was a genuinely innocent oops.
What to do today?? It's silly to get stuck into work when it is already Friday tomorrow, isn't it?? ... hmmm ... I'm definitely not going for a swim in the sea. The waters are shark infested, and these sharks seem to have a taste for Zimbabweans. Perhaps today is a good time to google holiday destinations and plan something for the later part of this year. Yeah ... that would do it, roll on "better" days (.)(.)
Subscribe to:
Posts (Atom)
