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 (.)(.)
Wednesday, January 13, 2010
The show must go on
The holiday season is officially over. We are reminded of this as the unrelenting alarm clock goes off. Jordan's first day of Grade 4. He is very excited. Lying in bed everything seems to have settled in terms of nausea. This soon becomes an illusion as I start getting Jordan's breakfast ready and burning my fingers in the interim.
Fingers burning, tummy turning, I am reminded of the prose poem written by my rock star whilst feeling energy-less in the shower. The section of the poem that went through my head at the time was:
I want to know
if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.
I want to know if you can see Beauty
even when it is not pretty
every day.
And if you can source your own life
from its presence.
It doesn't interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.
Oriah Mountain Dreamer
The relief does not come from the fact that I actually did Jordan's breakfast this morning, but from the fact that I can rely on God's faithfulness to get me through the tough ones with little reminders like this.
School assembly was great. I always love seeing the Grade 1 parents dropping their little ones off for the first time. I don't know who is more anxious - kids or parents. School was followed by a breakfast out and doing a nicety for a friend in need. Now I am wacked - but happy.
It is way too hot (38 in the shade) to sleep. With burnt fingers, I can't be writing any cheques today either. The gardener is here, so can't be doing any skinny-dipping. My outgoing email is also needing some attention, that is too much effort for me right now - someone spam-copped me ... dam!! But I am still happy.
I think I am going to take my happiness to some shady spot in the garden and try and read my book (.)(.)
Fingers burning, tummy turning, I am reminded of the prose poem written by my rock star whilst feeling energy-less in the shower. The section of the poem that went through my head at the time was:
I want to know
if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.
I want to know if you can see Beauty
even when it is not pretty
every day.
And if you can source your own life
from its presence.
It doesn't interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.
Oriah Mountain Dreamer
The relief does not come from the fact that I actually did Jordan's breakfast this morning, but from the fact that I can rely on God's faithfulness to get me through the tough ones with little reminders like this.
School assembly was great. I always love seeing the Grade 1 parents dropping their little ones off for the first time. I don't know who is more anxious - kids or parents. School was followed by a breakfast out and doing a nicety for a friend in need. Now I am wacked - but happy.
It is way too hot (38 in the shade) to sleep. With burnt fingers, I can't be writing any cheques today either. The gardener is here, so can't be doing any skinny-dipping. My outgoing email is also needing some attention, that is too much effort for me right now - someone spam-copped me ... dam!! But I am still happy.
I think I am going to take my happiness to some shady spot in the garden and try and read my book (.)(.)
Tuesday, January 12, 2010
All consuming
No change since yesterday ... still feeling as sick as a dog. I don't even want to talk about it really, the symptoms and all. I find the whole thing terribly "all-consuming" to feel so crap. For someone like me who is very rarely sick, and has no tolerance for sickness, this whole ordeal has become incredibly challenging.
The need to press on before falling into major self-pity is my biggest challenge, especially as it is such early days. I can't help thinking I have been conned. I don't even really know how necessary this treatment is. I mean, who knows for sure? Especially as I was an ideal candidate for clinical trials. Doctors are making me sick, and I am allowing it.
I just look at anything red, like cranberry juice, and I feel sick. The mere word of "chemo" turns my whole stomach to the extent that I can literally smell and taste the chemical, the lounge, the needles via my breath just by the mention of the word.
Addiction recovery taught me about the pitfalls of obsessive thinking, in anything, not just your choice of addiction. How is this different!!! I obsess about not sleeping, not being able to exercise, not being able to get what I want done. I obsess about how awful it feels to be sick and how hard it is on my family. I obsess about the next 6 rounds and not really having the stomach to go on with it. Surely this ain't a good place for me to be? Obsessing!!!
I simply don't want to play anymore!!! I don't want to be their guinea pig (.)(.)
The need to press on before falling into major self-pity is my biggest challenge, especially as it is such early days. I can't help thinking I have been conned. I don't even really know how necessary this treatment is. I mean, who knows for sure? Especially as I was an ideal candidate for clinical trials. Doctors are making me sick, and I am allowing it.
I just look at anything red, like cranberry juice, and I feel sick. The mere word of "chemo" turns my whole stomach to the extent that I can literally smell and taste the chemical, the lounge, the needles via my breath just by the mention of the word.
Addiction recovery taught me about the pitfalls of obsessive thinking, in anything, not just your choice of addiction. How is this different!!! I obsess about not sleeping, not being able to exercise, not being able to get what I want done. I obsess about how awful it feels to be sick and how hard it is on my family. I obsess about the next 6 rounds and not really having the stomach to go on with it. Surely this ain't a good place for me to be? Obsessing!!!
I simply don't want to play anymore!!! I don't want to be their guinea pig (.)(.)
Monday, January 11, 2010
Slip sliding away ... and stuck
Don't be misled by this photograph. My son needed to earn extra pocket money on something he wants to buy, so because it is a FIRST, I want it recorded. Besides, it does look like he is helping mommy out on a crap-feeling weekend I have just had. Regardless of his intentions, he did help out actually.
Apart from enjoying the relaxation, pooling, reading and friend's visits over the weekend, I did feel a little despondent yesterday. It feels like I have been lied to by the doctors, when they said my experience will be similar to my 1st chemo. They simply do not have a clue do they, and really only go by stats.
After writing how positive things looked on Saturday, it all went downhill physically from there. I had a crappy weekend. Fatigue, nausea ... which just started out as feeling icky, but I did have 3 occasions of having a mouthful and doing the swallowing thing to keep it down. Imagine how bad it would be without the R200 a pop puke pill. I have heart-burn, like when I was pregnant, mostly at night. I am terribly bloated from the cortisone, but if I remember, I felt the same bloated-ness with the 1st chemo. If it is to follow the same path, then this should only last a day or 2.
My eyes are swollen and blurry, my face and tummy too, which is incredibly uncomfortable. I think I have gone up to the 7-months pregnant look. I have also put on 2kgs. My boobs are swollen too, like they are going to burst out of their scar-seams. I am also very sensitive emotionally, I want to cry at the slightest insult or dodgy look. So unlike me!!! I think I should be menstruating around about now, which ain't going to be happening ever again (a small silver lining), so this could be a contributor to the emotional-baggage side of things. I wonder if I can get a refund for all the sealed FemPro products I still have?
I have had 2 nightmares, almost like hallucination. The one was when I literally woke up choking, it felt like a silver gob-like monster was coming up from my tummy and depositing the metallic taste in my mouth. The image was a nightmare, but the choking that woke me and the deposit it left was real.
As for my bald head, it sticks to everything man!! When leaning on pillows, cushions, towels, hands ... it is most uncomfortable. It starts with a sweat and then it is like glue. Not enjoying it. I even tried to wear a beanie, but as I don't have my own yet, Jordan's 7-8 year beanie was a little tight on my big head and made me feel like a china man. Like when my mom used to plait our hair, even after the pleas of "mommy, mommy my plaits are too tight", we all ended up looking like Chinese kids.
I think I am going to have to put talcum powder everywhere as suggested by Hil's sister. To those who visit, don't be alarmed if my head looks even whiter than normal. Charlotte gave me a pure silk head thing that I am now using as a pillow case. It has helped a bit, it's slip sliding gliding, when I am not sweating.
The symptoms make me dread the next 6 rounds. I do wonder if my negative thoughts concerning the doctors makes me want to vomit more. Just thinking how much we have to trust doctors, and their knowledge of this, encourages them to be the unquestioned law. But let's be honest, even if we do question why do we need this? What's that for? What will happen to me if I don't? Our lack of understanding bears no challenge to their answer - it's all very nauseating isn't it?
All I can say is that this experience ain't for the faint-hearted, and I am left wondering why I was chosen, especially as I don't feel that strong anymore. I do however take strength and feel tremendous love and support from Hil mostly, my son - who is now "sleep-walking" to our room in the middle of the night to sleep with us, and every single one of my friends who continue to send prayers and healing energy. I don't think I could bear doing this alone, and I really need to be strong for my boy so that he is not scared and have this need to sleep with us (.)(.)
Saturday, January 9, 2010
Cocky Cunningham is back
I woke up at 6am feeling very positive and jabbering away to Hil. I had verbal diarrhea even though the response back to me was just mmm, mmm, mmm. After testing how awake she was with a question that required an answer, I still got mmm. I could have sworn her eyes were open. When I pulled them open, it was a case of "oh look, your eyes ARE open".
I am feeling rather confident after being told that the rest of my chemo treatments are likely to take the same shape as my first one. This should mean very little symptoms. I write this even though I sit with a pounding headache that has not been helped by the Panado I took a couple of hours ago. And, I definitely had a fever last night - sweats and freezing. Not like the first time where it was my imagination after sleeping under a duvet on a hot summer's afternoon. I do have hope though, and it sounds logical that things should take the same shape as the 1st chemo, so I am going to hang on to this sentiment.
My white blood cells took the oncologist by surprise as it was 3 points higher than expected. So I am guessing that this body of mine is pretty healthy and responding beautifully to all the healing thoughts, prayers and energy being sent from my peeps. Thanks guys.
As for the relationship I have with the oncologist, I don't really have much hope for that. I certainly got his back up with the hairs in his nostril noticeably twitching.
Over the years I have learned how to confront in a non-aggressive manner, you know trying to be constructive, but at the same time getting my disgruntles across. Well, my oncologist was totally defensive and blaming all their inefficiencies that contributed to the discomfort of my first treatment on everything else, instead of taking responsibility for his contribution. The blame went to the chemist, the time of year, "it is how things are done" without an explanation as to why. OMW is all I could think. I thought I had better change direction knowing that I still have 8 months with the man. So I attempted a compliment by saying "I do understand that your job is to concentrate on the medicine side of things, which clearly you are doing a good job as I have had no symptoms, but there are human aspects too and I am feeling a little negative, and I don't want my immune system to cling on to negativity". He handed me numbers to other people to talk to - councilor, dietician. Oh man - do they desensitize doctors as part of their training??
Oh well - expectations = disappointment again. I just expect someone of that caliber to know how to not let constructive criticism affect them to the extent of hackles standing sky high and noticeably on their back. I need to let it go, but I can't help noticing that both egotistical doctors I have encountered are both shorter than I am!!! And, I am only 5"6.
As for the oncology lounge, it was a better experience. The lounge was rather empty actually. There were about 6-8 of us this time (compared to 20-30 my first time around). 4 of them looked like they were in their early 40's (like me) and early stages of their treatment. I chatted nicely to one of them (in English) who sat in my circle - exchanging experiences with children, treatment, being bald, where we are both at, etc.
When I enquired where the other "oldies" were, the sister just said some had to have blood transfusions, some did not pass the white blood cell test. The look in her eye and slight hesitation made me think she might wanted to add - some have passed.
Feeling all cocky and prepared for my needles (thanks to the Emla cream), I shat myself when the sister started preparing the vein on the side of my wrist instead of my hand (where I had prepared). I reacted by pulling back in shock. I had to start my preparations all over again with a 20 minute delay. The sister told me that they prefer to use different veins in order to preserve them. In future I will be preparing the whole arm.
The "oh boy" reactions that I had perceived the first time around from the other patients towards my low pain threshold were confirmed when one of them asked "have you not had children?". I don't even think my "defensive answer" of "IT WAS C-SEC" satisfied their irritation.
I have had my baldness for 2 days now. As I only went with electric shaver, it still left prickles that irritated whilst sleeping - you know the velcro feel. So yesterday, Hil bravely purchased shaving gel and Mach 3 razor to do the shave thing. When did shaving gel go up to R80??? So last night in the bath, after getting specific instructions from my friend Darren on the "how to", I had my close encounter with the razor.
The conversation with Hil went like this:
"I can feel you are nervous - and if you are not nervous, I won't be nervous" I said
"But I am nervous" she said
"Ok, well try not to be and I won't move"
"The worst that can happen is a few little cuts right?"
"WTF ... what do you mean the worst - this is not my legs you know"
She did a perfect job I must say, and it feels a whole lot better on my pillow. My hand does tend to stick to my head (because of the moisturizer) when leaning on it, but it is better than the velcro feel. My head feels like velvet now. The look is definitely what Darren warned ... witkop, shiny white with a tanned face ... but I do have a slight brown birth mark on my crown if that is any consolation.
I am already getting irritated with bandannas and the nanny-look and unless I go fancy hat shopping soon, I might just say "fuck it, this is my new look for the next 9 months" (.)(.)
I am feeling rather confident after being told that the rest of my chemo treatments are likely to take the same shape as my first one. This should mean very little symptoms. I write this even though I sit with a pounding headache that has not been helped by the Panado I took a couple of hours ago. And, I definitely had a fever last night - sweats and freezing. Not like the first time where it was my imagination after sleeping under a duvet on a hot summer's afternoon. I do have hope though, and it sounds logical that things should take the same shape as the 1st chemo, so I am going to hang on to this sentiment.
My white blood cells took the oncologist by surprise as it was 3 points higher than expected. So I am guessing that this body of mine is pretty healthy and responding beautifully to all the healing thoughts, prayers and energy being sent from my peeps. Thanks guys.
As for the relationship I have with the oncologist, I don't really have much hope for that. I certainly got his back up with the hairs in his nostril noticeably twitching.
Over the years I have learned how to confront in a non-aggressive manner, you know trying to be constructive, but at the same time getting my disgruntles across. Well, my oncologist was totally defensive and blaming all their inefficiencies that contributed to the discomfort of my first treatment on everything else, instead of taking responsibility for his contribution. The blame went to the chemist, the time of year, "it is how things are done" without an explanation as to why. OMW is all I could think. I thought I had better change direction knowing that I still have 8 months with the man. So I attempted a compliment by saying "I do understand that your job is to concentrate on the medicine side of things, which clearly you are doing a good job as I have had no symptoms, but there are human aspects too and I am feeling a little negative, and I don't want my immune system to cling on to negativity". He handed me numbers to other people to talk to - councilor, dietician. Oh man - do they desensitize doctors as part of their training??
Oh well - expectations = disappointment again. I just expect someone of that caliber to know how to not let constructive criticism affect them to the extent of hackles standing sky high and noticeably on their back. I need to let it go, but I can't help noticing that both egotistical doctors I have encountered are both shorter than I am!!! And, I am only 5"6.
As for the oncology lounge, it was a better experience. The lounge was rather empty actually. There were about 6-8 of us this time (compared to 20-30 my first time around). 4 of them looked like they were in their early 40's (like me) and early stages of their treatment. I chatted nicely to one of them (in English) who sat in my circle - exchanging experiences with children, treatment, being bald, where we are both at, etc.
When I enquired where the other "oldies" were, the sister just said some had to have blood transfusions, some did not pass the white blood cell test. The look in her eye and slight hesitation made me think she might wanted to add - some have passed.
Feeling all cocky and prepared for my needles (thanks to the Emla cream), I shat myself when the sister started preparing the vein on the side of my wrist instead of my hand (where I had prepared). I reacted by pulling back in shock. I had to start my preparations all over again with a 20 minute delay. The sister told me that they prefer to use different veins in order to preserve them. In future I will be preparing the whole arm.
The "oh boy" reactions that I had perceived the first time around from the other patients towards my low pain threshold were confirmed when one of them asked "have you not had children?". I don't even think my "defensive answer" of "IT WAS C-SEC" satisfied their irritation.
I have had my baldness for 2 days now. As I only went with electric shaver, it still left prickles that irritated whilst sleeping - you know the velcro feel. So yesterday, Hil bravely purchased shaving gel and Mach 3 razor to do the shave thing. When did shaving gel go up to R80??? So last night in the bath, after getting specific instructions from my friend Darren on the "how to", I had my close encounter with the razor.
The conversation with Hil went like this:
"I can feel you are nervous - and if you are not nervous, I won't be nervous" I said
"But I am nervous" she said
"Ok, well try not to be and I won't move"
"The worst that can happen is a few little cuts right?"
"WTF ... what do you mean the worst - this is not my legs you know"
She did a perfect job I must say, and it feels a whole lot better on my pillow. My hand does tend to stick to my head (because of the moisturizer) when leaning on it, but it is better than the velcro feel. My head feels like velvet now. The look is definitely what Darren warned ... witkop, shiny white with a tanned face ... but I do have a slight brown birth mark on my crown if that is any consolation.
I am already getting irritated with bandannas and the nanny-look and unless I go fancy hat shopping soon, I might just say "fuck it, this is my new look for the next 9 months" (.)(.)
Friday, January 8, 2010
Is there a horse amongst this shit
Still feeling somewhat miserable and moody this morning, but hopefully somewhere along the day I will find my personality. The white numbing cream works though, so this is something I shall take great comfort in today. I tried it out yesterday whilst doing my blood test. I smothered the inside of my arm half an hour and 15 minutes before, just to be sure. I still felt the prick, but it was bearable. Thank God.
My head is a little cold in the wind and my leg hairs hurt more than normal. I shaved a couple of days ago, and there are less prickles than normal, but when I get goose pimples, the ache feels like the hairs are straining to get through.
I'm also feeling very negative towards doctors and patients and it doesn't sit right in my tummy. Like I am off-kilt a bit. Not sure how to get this right when I know deep down that I do need to change this perspective. I don't want my immune system or cells to hang on to any negativity that enters my mind.
Despite my despondency and demotivated state, I have been given the most incredible business ideas during the early hours of the morning. I simply need to get over today and get my A into G (wrestle that procrastination to the ground) in order to keep the momentum of this excitement up and turn the ideas into reality. Roll on Monday!! (.)(.)
My head is a little cold in the wind and my leg hairs hurt more than normal. I shaved a couple of days ago, and there are less prickles than normal, but when I get goose pimples, the ache feels like the hairs are straining to get through.
I'm also feeling very negative towards doctors and patients and it doesn't sit right in my tummy. Like I am off-kilt a bit. Not sure how to get this right when I know deep down that I do need to change this perspective. I don't want my immune system or cells to hang on to any negativity that enters my mind.
Despite my despondency and demotivated state, I have been given the most incredible business ideas during the early hours of the morning. I simply need to get over today and get my A into G (wrestle that procrastination to the ground) in order to keep the momentum of this excitement up and turn the ideas into reality. Roll on Monday!! (.)(.)
Thursday, January 7, 2010
2 of 8 Looms
It's chemo number 2 already tomorrow. Today I have to go for blood tests to make sure that my white blood cells can cope with the onslaught. I feel miserable. I am demotivated to do any work. I don't want to go out as I am a little self-conscious with my head. I don't want to read, write or do anything. I just want to be happy and have my old life back.
I am freaking out about the needles for today and tomorrow. I read in my "Chicken Soup for the Breast Cancer Survivor" book that one of the patients also had the same freaking-out anxieties and simply asked for white numbing cream that goes on about half an hour before. WHY DON'T DOCTORS TELL US ABOUT THINGS LIKE THIS???? They are more interested in putting the R240 next to the time of your appointment in big bold letters. This is obviously the most important thing to them. He better have something to tell me that I don't already know that is worth the R240, otherwise I will bitch about that too.
I am in the perfect frame of mind to let my oncologist know exactly how I feel about their oncology unit. Give him a piece of my disgruntled mind, I will. Luckily for him, I am not the person who only bitches about their problems, I will provide solutions as to how they could run things more friendly and smoothly from a patients point-of-view. Why bitch about a problem unless you have a suggestive solution to go with it.
So I phoned around and there is an over-the-counter cream called Emla that I can try and put on a half an hour before. Let's hope it works. I am also going to take a big dose of Calmettes. I would rather be half-doped in my chair than have to look at a whole bunch of sad-sack old ducks turning yellow and probably talking about their bald heads in Afrikaans. Bleeeuuuggghhh (.)(.)
I am freaking out about the needles for today and tomorrow. I read in my "Chicken Soup for the Breast Cancer Survivor" book that one of the patients also had the same freaking-out anxieties and simply asked for white numbing cream that goes on about half an hour before. WHY DON'T DOCTORS TELL US ABOUT THINGS LIKE THIS???? They are more interested in putting the R240 next to the time of your appointment in big bold letters. This is obviously the most important thing to them. He better have something to tell me that I don't already know that is worth the R240, otherwise I will bitch about that too.
I am in the perfect frame of mind to let my oncologist know exactly how I feel about their oncology unit. Give him a piece of my disgruntled mind, I will. Luckily for him, I am not the person who only bitches about their problems, I will provide solutions as to how they could run things more friendly and smoothly from a patients point-of-view. Why bitch about a problem unless you have a suggestive solution to go with it.
So I phoned around and there is an over-the-counter cream called Emla that I can try and put on a half an hour before. Let's hope it works. I am also going to take a big dose of Calmettes. I would rather be half-doped in my chair than have to look at a whole bunch of sad-sack old ducks turning yellow and probably talking about their bald heads in Afrikaans. Bleeeuuuggghhh (.)(.)
Wednesday, January 6, 2010
All Britney Speared
What started as a traumatic day for me, ended as one of the most enjoyable days, thanks to very special friends. I think I was all cried out by the time I got to Ian and Wendy's. They made the shave-athon experience very special for me. They had prepared their children as to what daddy was going to be doing ... and why. The children were incredibly sensitive (including my Jordan) and 9 year old Stanley even said when I left that I looked like a "sexy pirate girl" with my bandanna and sunglasses. Sweet man - it did put a smile on my and Jordan's face.
Ian even purchased a new shaver especially. What a thoughtful, kind thing to do. Thankfully, he is a shaver himself, so it won't get wasted, but it did feel special to be the one to break it in. He was incredibly gentle and it didn't hurt a bit. He even sung me his old English barber songs that he remembered way back in his school-play days. I wonder if I told him to not change his day job??? :-)
An outdoor breakfast by the pool and a swim in this incredible heat (37 in the shade) finished the morning. Afternoon was taken up with a snooze. I was totally exhausted with all the crying and anticipation, I guess. Late afternoon we went to other friends for a braai, tennis and swim evening. They live on a farm with the most incredible view of Table Mountain. With a spectacular sunset, good food, no wind, lots of laughs and great company, it turned the rest of the day, which could have been more traumatic, into a special day for me.
I do catch a fright when I look in the mirror, but I will get used to it, I am sure. It is rather cool in this heat and underneath all that hair, who would have thought I would find a beauty spot on the side of my head. Luckily I have no scars, dents or rolls at the back of my neck.
Tit inspection has taken a back seat, it is now head inspection every 5 minutes. This body of mine sure has taken a lot this year, it's a no wonder I am wanting my primary goal for 2010 to be one of nurturing and kindness to myself.
Hil made me see yesterday what all my crying was about. Because I have not felt or looked sick up to now, despite all the battering my body has been through, being bald almost feels like I now wear the passport for all to see that I am sick. I mean let's be honest. Although I am modern and hip (hehehe - in my dreams) I am not the type of person that takes this modernity to the extreme by going bald. It is the trend in some circles - just check out All Access on TV. So if you are not in that circle, there could only be one other reason for a chick to be bald ... CANCER passport. I do dig to be the stand up comedy and centre of attention at parties and all, but I do not like to be the sore thumb sticking out, announcing my disease.
Maybe I should go hip shopping to suit my new head - you know, begin the self-nurture goal. GI Jane sure doesn't look cool wearing crimpolene pants and cardigans. Yep, I am going to make this work for me (.)(.)
Ian even purchased a new shaver especially. What a thoughtful, kind thing to do. Thankfully, he is a shaver himself, so it won't get wasted, but it did feel special to be the one to break it in. He was incredibly gentle and it didn't hurt a bit. He even sung me his old English barber songs that he remembered way back in his school-play days. I wonder if I told him to not change his day job??? :-)
An outdoor breakfast by the pool and a swim in this incredible heat (37 in the shade) finished the morning. Afternoon was taken up with a snooze. I was totally exhausted with all the crying and anticipation, I guess. Late afternoon we went to other friends for a braai, tennis and swim evening. They live on a farm with the most incredible view of Table Mountain. With a spectacular sunset, good food, no wind, lots of laughs and great company, it turned the rest of the day, which could have been more traumatic, into a special day for me.
I do catch a fright when I look in the mirror, but I will get used to it, I am sure. It is rather cool in this heat and underneath all that hair, who would have thought I would find a beauty spot on the side of my head. Luckily I have no scars, dents or rolls at the back of my neck.
Tit inspection has taken a back seat, it is now head inspection every 5 minutes. This body of mine sure has taken a lot this year, it's a no wonder I am wanting my primary goal for 2010 to be one of nurturing and kindness to myself.
Hil made me see yesterday what all my crying was about. Because I have not felt or looked sick up to now, despite all the battering my body has been through, being bald almost feels like I now wear the passport for all to see that I am sick. I mean let's be honest. Although I am modern and hip (hehehe - in my dreams) I am not the type of person that takes this modernity to the extreme by going bald. It is the trend in some circles - just check out All Access on TV. So if you are not in that circle, there could only be one other reason for a chick to be bald ... CANCER passport. I do dig to be the stand up comedy and centre of attention at parties and all, but I do not like to be the sore thumb sticking out, announcing my disease.
Maybe I should go hip shopping to suit my new head - you know, begin the self-nurture goal. GI Jane sure doesn't look cool wearing crimpolene pants and cardigans. Yep, I am going to make this work for me (.)(.)
Tuesday, January 5, 2010
Time to say goodbye
The hair is going fast now. Hair everywhere feels like having gone to the hairdresser who doesn't clean you off. My shirt and arms almost have more hair than my head. Just yesterday I literally watched my sideburns disappear thanks to my glasses and sunglasses. It is also rather painful to take the glasses on and off. I am sure they are stretched as it was the only way to take the glasses off by stretching them out. Whilst having coffee with my friend, I kept having to wipe the loose hair off my arm ... and I was just sitting still.
The pain, which feels like a thousand little needles - each hair being a needle, first started on the crown on that 1st day. Then 2nd and 3rd day it was the whole top of the head, when I was doing the toupee styling. Yesterday and today it is the sides and back, but no longer on top. This must mean the top is now dead. It is horrible to lay on the pillow with every move going against the grain and being stuck with those hair needles. I don't feel ready to go bald right now, today - but I feel more traumatized to see the bald spots starting to appear as though I have mange.
I'm a little scared that the electric shaver is going to be painful, but I am hoping that once it is done the "hair needle" pain will actually disappear. I am also going to feel cleaner without all this hair all over me, in my bed, on my pillow, in my food, on my books, in Jordan's mouth ... fuck ... everywhere!!! I am also hoping that Ian knows how to be gentle - he is a rather large man that is going to look scary with a shaver in his hand!! :-)
I cried this morning spontaneously, but it doesn't feel like I am crying from a vanity point of view of losing my hair, it's just that I am hating this experience. I also cried spontaneously whilst having my massage with Frank yesterday. I'm not 100% sure why I was crying, it was a conglomeration of things actually. The music, the feeling of safety to let go during one of my visualization rituals and the fact that he found more pains in the whole right side of my back also didn't help. The lymph has started there now in addition to my arm. In the beginning of the massage therapy, it felt like my whole right lung area was bruised and he could hardly even touch it, by the end of the massage though it was more at ease.
Before I got to writing this blog, I was still deciding whether I should hold on for one more day with my hair. My mind was made up when I saw emails from 2 special friends encouraging me and telling me that I am more than my hair. It also helped a stack that my bosom buddy bravely sent me her private photos of her metamorphosis. Thanks guys, I needed to hear that today. I'm crying now as I write this so am going to end off as I can't even see the screen (.)(.)
The pain, which feels like a thousand little needles - each hair being a needle, first started on the crown on that 1st day. Then 2nd and 3rd day it was the whole top of the head, when I was doing the toupee styling. Yesterday and today it is the sides and back, but no longer on top. This must mean the top is now dead. It is horrible to lay on the pillow with every move going against the grain and being stuck with those hair needles. I don't feel ready to go bald right now, today - but I feel more traumatized to see the bald spots starting to appear as though I have mange.
I'm a little scared that the electric shaver is going to be painful, but I am hoping that once it is done the "hair needle" pain will actually disappear. I am also going to feel cleaner without all this hair all over me, in my bed, on my pillow, in my food, on my books, in Jordan's mouth ... fuck ... everywhere!!! I am also hoping that Ian knows how to be gentle - he is a rather large man that is going to look scary with a shaver in his hand!! :-)
I cried this morning spontaneously, but it doesn't feel like I am crying from a vanity point of view of losing my hair, it's just that I am hating this experience. I also cried spontaneously whilst having my massage with Frank yesterday. I'm not 100% sure why I was crying, it was a conglomeration of things actually. The music, the feeling of safety to let go during one of my visualization rituals and the fact that he found more pains in the whole right side of my back also didn't help. The lymph has started there now in addition to my arm. In the beginning of the massage therapy, it felt like my whole right lung area was bruised and he could hardly even touch it, by the end of the massage though it was more at ease.
Before I got to writing this blog, I was still deciding whether I should hold on for one more day with my hair. My mind was made up when I saw emails from 2 special friends encouraging me and telling me that I am more than my hair. It also helped a stack that my bosom buddy bravely sent me her private photos of her metamorphosis. Thanks guys, I needed to hear that today. I'm crying now as I write this so am going to end off as I can't even see the screen (.)(.)
Monday, January 4, 2010
Widow's Peak
I definitely did things the right way with regards to having the No. 2 haircut. The 01st and 02nd January only saw slight evidence of hair loss. A few hairs here and there. Hairs on my book when I am reading, in Jordan's mouth when we were playing (one must have flown in when he was laughing uncontrollably with "torture tickle"). Only from yesterday (03rd) is there more evidence where I come away with a handful of hair any time something touches my head, which I am trying to avoid as much as possible. I also find myself looking at the handful for a long time in disbelief. This would have felt more traumatic, I imagine, if I had long flowing hair.
Although a few people have noticed the difference from day to day with the thinning of my hair and the prominent "widow's peak" look, I must have a lot of thick hair as I still have a head full of hair to lose. As short as my hair is, I still have enough to do the forward Donald Trump thing over my widows to make it look like I have a double cow's lick.
My roots are extremely sensitive and tender to the touch. The discomfort feels like going against the grain of my hair growth and a slight burning effect. Styling comes in the form of patting the top of my head as though I have to fix my toupee. Because of the tenderness and the "okay" look, I have decided to hold off with the shave until absolutely necessary.
The weirdest thing is that in the early hours of the morning when my head touches the pillow and wakes me from a dead sleep because of the slight discomfort and pain, I bolt out of bed in a panic thinking I have bald patches all over the place - but during the day, I am calm and expecting the inevitable. It feels like a terrible nightmare when I wake up with a fright. It takes a while to calm myself in those quiet moments because it ain't no nightmare ... IT IS going to happen.
It is not a pleasant experience and I didn't think it would affect me as much as it is. I think once it is all gone I might get over it, but the losing process is kak. As kak as it is, I still don't want to shower, brush or do anything that speeds up the process. I don't know why I am hanging on, I think it is more because of the tenderness and the thought that the electric shaver would be quite sore. I can't imagine how awful it must feel for a man who loses his hair permanently. As for me, I wish I could take comfort that it is just a temporary thing. I am also trying to make myself visualize that for every hair I lose means a cancer cell is dying.
Apart from New Years Eve, I have not felt any excessive fatigue. Most days I have my regular arvie nap, but this doesn't feel like a major need or abnormal. The worst of everything is still the battle with my right arm feeling bruised, and being unable to straighten. I am a little pissed off that I was not prepared or told about this in more detail from the doctors. I have had to learn by myself that it is a thing called lymphedema that could be irreversible if not treated properly. I still have to find out how to treat it though.
One good thing is that I am soon off to my weekly massage with Frank, this always helps the arm for a couple of days (.)(.)
Although a few people have noticed the difference from day to day with the thinning of my hair and the prominent "widow's peak" look, I must have a lot of thick hair as I still have a head full of hair to lose. As short as my hair is, I still have enough to do the forward Donald Trump thing over my widows to make it look like I have a double cow's lick.
My roots are extremely sensitive and tender to the touch. The discomfort feels like going against the grain of my hair growth and a slight burning effect. Styling comes in the form of patting the top of my head as though I have to fix my toupee. Because of the tenderness and the "okay" look, I have decided to hold off with the shave until absolutely necessary.
The weirdest thing is that in the early hours of the morning when my head touches the pillow and wakes me from a dead sleep because of the slight discomfort and pain, I bolt out of bed in a panic thinking I have bald patches all over the place - but during the day, I am calm and expecting the inevitable. It feels like a terrible nightmare when I wake up with a fright. It takes a while to calm myself in those quiet moments because it ain't no nightmare ... IT IS going to happen.
It is not a pleasant experience and I didn't think it would affect me as much as it is. I think once it is all gone I might get over it, but the losing process is kak. As kak as it is, I still don't want to shower, brush or do anything that speeds up the process. I don't know why I am hanging on, I think it is more because of the tenderness and the thought that the electric shaver would be quite sore. I can't imagine how awful it must feel for a man who loses his hair permanently. As for me, I wish I could take comfort that it is just a temporary thing. I am also trying to make myself visualize that for every hair I lose means a cancer cell is dying.
Apart from New Years Eve, I have not felt any excessive fatigue. Most days I have my regular arvie nap, but this doesn't feel like a major need or abnormal. The worst of everything is still the battle with my right arm feeling bruised, and being unable to straighten. I am a little pissed off that I was not prepared or told about this in more detail from the doctors. I have had to learn by myself that it is a thing called lymphedema that could be irreversible if not treated properly. I still have to find out how to treat it though.
One good thing is that I am soon off to my weekly massage with Frank, this always helps the arm for a couple of days (.)(.)
Friday, January 1, 2010
The bitch is malting
Menopausal, hair loss ... perfect title for today. Okay I know it is a little early for menopause to start - but explain why I am such a bitch of late???
Yep, it has started. Last night we only went to bed after 1am (well this morning actually) after seeing the New Year in with friends. You should have seen what the moon looked like last night with the spattered clouds. True artist this God of ours. Despite being really tired, I woke up and bolted out of bed at 4am with the crown of my head (by the roots) feeling very tender to the touch. I thought I had this bald patch right in the middle of my head. I felt panicked actually. Light went on as I inspected my head. All there, but this morning when we woke up properly we noticed my hairline receding with a few dotted loose hairs on my chest. Nothing dramatic yet, but it has started.
Yesterday, after finishing my blog post I did nothing but sleep. For the first time I have noticed a symptom. They did say that from day 10 my white blood cells will drop and I will feel fatigued. That was me yesterday on day 14. I only showered at 5pm because we had friends coming around, but I could have slept all night, if I had half a chance, even after all the sleep I had during the day.
I hope my hair does the "go-slow" lose because I have asked my friend Ian to do the big shave. He is on a camping holiday with his family and will only be back Sunday. So let's hope it is only the slight Apache-look by then.
Ian is the father of Jordan's best friend Stanley. I thought it would be a good idea for his kids to also be part of the process to make it easier for Jordan. If his mates know the jol, it will be easier to accept and not have to explain to his friends why his mom is bald. That and not having many male friends who is in possession of an electric shaver - I am definitely not going the razor route!!
I've just woken up, and am ready to sleep again - but it is rather hot, so instead I will do my snoring and dribbling by the pool to at least attempt a little sociable-ity on my mom's last day. Let's hope the wind behaves to make it an outdoor day (.)(.)
Yep, it has started. Last night we only went to bed after 1am (well this morning actually) after seeing the New Year in with friends. You should have seen what the moon looked like last night with the spattered clouds. True artist this God of ours. Despite being really tired, I woke up and bolted out of bed at 4am with the crown of my head (by the roots) feeling very tender to the touch. I thought I had this bald patch right in the middle of my head. I felt panicked actually. Light went on as I inspected my head. All there, but this morning when we woke up properly we noticed my hairline receding with a few dotted loose hairs on my chest. Nothing dramatic yet, but it has started.
Yesterday, after finishing my blog post I did nothing but sleep. For the first time I have noticed a symptom. They did say that from day 10 my white blood cells will drop and I will feel fatigued. That was me yesterday on day 14. I only showered at 5pm because we had friends coming around, but I could have slept all night, if I had half a chance, even after all the sleep I had during the day.
I hope my hair does the "go-slow" lose because I have asked my friend Ian to do the big shave. He is on a camping holiday with his family and will only be back Sunday. So let's hope it is only the slight Apache-look by then.
Ian is the father of Jordan's best friend Stanley. I thought it would be a good idea for his kids to also be part of the process to make it easier for Jordan. If his mates know the jol, it will be easier to accept and not have to explain to his friends why his mom is bald. That and not having many male friends who is in possession of an electric shaver - I am definitely not going the razor route!!
I've just woken up, and am ready to sleep again - but it is rather hot, so instead I will do my snoring and dribbling by the pool to at least attempt a little sociable-ity on my mom's last day. Let's hope the wind behaves to make it an outdoor day (.)(.)
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