I am cancer-FREE baby

I think I knew all along that the cancer had gone, but it is comforting to get the scientific confirmation.

After my last traumatic chemo episode, I just knew I couldn't do it anymore. It didn't feel like a brattish thing of "not wanting to play anymore", it felt like a nagging thought and tummy thing. I prayed about it. The next morning I demanded the answer and all I got was "listen to your feelings".

My feelings indicated that every time I thought about chemo my stomach would literally turn and I felt this doom and gloom - like a total separation and disconnection from life and God. It was lonely. Everything was being affected, especially my other recovery, which is my number 1 priority in life. Even though I have thus far not missed a day of work and/or other responsibilities, my life becomes totally unmanageable when I am on chemo, particularly in the head. This is extremely dangerous for my other recovery.

When I thought about not doing chemo I got that butterfly effect in my tummy of hope - my faith felt stronger. I got excited about knowing that I would need to replace chemo with a lifestyle change. I would need to make a new commitment to my life. Being demotivated to exercise, eat properly, etc is no longer an option for me. It rather excites me, especially as there would be the added benefit of losing weight and feeling energetically great.

But this did not feel like the answer I was looking for, it seemed to be a conveniently easy and logical way to think. Then that same morning Hil and I got talking. The kind of talking where one thing leads to another and before I knew it we were addressing old hurts in our relationship. Stuff that has never really been easy for me to talk about, especially as I was mostly responsible for all the hurts. It was a good talk and when she left the room to make our morning tea, I got this overwhelming emotion and began to cry. Then quite by surprise I got the thought "the door has NOW opened to your healing". There was the answer I was demanding and I knew it without a shadow of a doubt.

I have known for a while now that my addictions progressed mostly due to my inability to express my emotions and feelings as well as to get rid of the shame caused by the continuing cycle - you know - feel bad, drown it, behave bad, hurt others and myself, feel bad ... and start the cycle all over again as an attempt to get away from it all. I also know that cancer in the breast is indicative of some form of nurturing and parenting. Not necessarily me and my mother or me and Jordan, it could also be me and ME. You know, the responsibility of looking after myself in a motherly nurturing way.

Then it was brought to my attention by another specialist that when one stops the booze or drugs and hasn't quite learned yet how to express those things that one is trying to escape from, it has to come out in another way. Hence my breast cancer! It's all very much a wake up call for me actually and the awareness of it all is quite liberating.

I never really wanted to do chemo as I knew I would include and go the alternative route as well, but I felt almost obliged to go the scientific route, especially after being chastised by doctors of "what university did you go to that gives you the knowledge to make such a decision!!"

I really don't believe it is an irresponsible decision that I have made as I was merely on preventative treatment - my nodes were all clear. If I had lung cancer or brain cancer or if the nodes were positive, that to me would be irresponsible.

My new oncologist wouldn't allow me to stop chemo unless my bone scans were clear. So after a 20-minute full bone scan with enough nuclear stuff in me to light up any airport check-in, I did all the remaining tests and PASSED THEM ALL with no sign of spread.

Basically what this means is that if I do continue with the full recommended treatment the stats would be a 20% chance of relapse and a 2% chance of dying. Stopping the chemo now the stats = 24% relapse, 2% dying. The extra 4% does not warrant the separational pain and anxiety that the treatment causes. Like I have said before, I have more chance of getting hit by a bus.

I do however have to do the radiation and hormone therapy. There was no negotiation there. This starts next week every day for 7 weeks and then 5 years of hormone therapy, which is basically just a pill. It is not the administering of the therapy that is the problem, but the effects and risks that is causes that is a bit freakish. The high risk of uterus cancer will be sorted with a hysterectomy though.

Unlike my old oncle - my new oncologist has explained in detail the effects I can expect with radiation. Everything by the right boob - skin, breast tissue, muscle, bone and lung will be effected, but it all should heal within a year.

I actually asked her why does nothing get done or changed unless it is challenged. Like interest rates at the bank or negotiating a car deal - unless you ask, you won't get it, because you simply don't know it is available. I asked her why is it the same with health issues? Her explanation was that they have a successful recipe that works for a fair amount of patients - and there would be no real need to change it unless it is challenged. I think challenging is good then as it gives them a new angle to look at if successful - that is if you are prepared to take the risk.

My new oncologist is really a breath of fresh air - she emailed me the minute she got my bone results. She also doesn't have a problem showing her human-ness - like when I showed my appreciation for her email, her reply was simply a big X ... !! Why do chicks do things so differently and not feel threatened by it?

So it is all good and I got to show my gratitude with an opportunity of helping out a friend in need.

The only thing that is still bugging me is why do they have bibles in all the oncology rooms and scanning places?? They are so prominently displayed, and the likelihood of someone having the time to pick it up and get the full intended message is rare. Perhaps it is an attempt to remind the patient that faith too is needed!! Actually, come to think of it - could this be a bit of admitting that not all knowledge can be gained from university?

Okay I am off now to grow my hair (.)(.)

So much to say ... so little time

I have so much to say and write about, but I sit in front of the page ... and ... nothing!! But, let me try and make an attempt as I am likely to forget all that I want recorded.

I met my new oncologist the other day and so far, I think I am going to get on with her. She spent more than an hour with me and listened to ME and why I want to stop treatment. I tried my hardest to not turn it into a bitching session, but unfortunately there were a few gripes I just had to get out and let go of .. and I did feel a whole lot better after having someone actually listen to me.

She looked at me and my treatment as a whole person and not just number 2099 - the cancer patient needing chemo. I really appreciated that. In a nutshell, she goes with my decision of not continuing with chemo on the condition that I pass a few tests that were never done. Those tests are today - bone density, other blood tests, etc. I shall know my fate tomorrow although I will still need to do radiotherapy and hormone therapy.

She was just a little concerned that there was a slight spike in my bloods the last time around, but she thinks it might be because I still (embarrassingly enough) smoke!

We better hope that I don't need to continue with the chemo now, because if I do, it means that the tests came out negative and I have cancer elsewhere. But that ain't going to happen!! I just feel it in my bones.

I also saw the guynie 2 weeks back who informed me that the hormone therapy I will be going on is high risk for uterus cancer and it is strongly suggested that I have a hysterectomy before the year is out. My oncologist confirmed this. My uterus is apparently the size of a 3 month pregnancy, which is not good as the fybroids she detected 6 months ago have not disappeared and my walls have thickened.

Anyways, I have so much to say now that I am on a roll, but have to get Jordan off to school in a very welcomed downpour of rain - a relief from the sweltering heat wave we have been experiencing (.)(.)

C'est La Vie

In the middle of writing my blog the other day, I stopped to write this email to my new oncologist:

Dear Dr X

I got a call from your PA yesterday confirming that you are happy to take me on from Dr XX. Thank you for this.

Would it be at all possible if I could ask you to give me the survival statistics if I had to stop all treatment now. I know this sounds like a rather rash request, but as I am only on precautionary treatment, I need to weigh up my odds as I am truly frightened of having to experience another episode like my last chemo treatment, where they battle to find a vein. Dr XX has suggested that I have a port put in, but I don’t really want to go that route as I have negative feelings towards it after my friend died 5 years ago from septicemia from the port, after just going in for a normal chemo treatment.

Much appreciated if you could let me have these stats.

Not surprising to not get my stats, but I did get this reply:

Please come and see me. I would like to have all the relevant information and then we can make a rational decision about it.

I am yet to make the appointment, but I will today. Although I think I have already made up my mind. My decision has had signs of confirmation (i.e. answered prayers and continuing synchronicity) which I shall write about another day for remembrance purposes.

As I have not made my final decision, I do pray and request that whatever that decision may be, that my friends and family will accept it as my decision and not try and talk me out of it. I have very good reasons for wanting to make this decision, and it is not just the reason of being frightened. All I can say now is that I should have listened to my intuition from the beginning, but I didn't. My faith, however has never been stronger than it is NOW (.)(.)

Decisions ... decisions

There is nothing sweeter than waking up after a good nights sleep, feeling well. It was a scorcher last night, but with the doors wide open allowing the night cool to blow through the room, it is kinda refreshing to wake up at 6am feeling a little chilly.

When I am well and feeling grateful for being well, it is amazing the things I notice. It is quite a weird physical feeling being hairless. We all know what it is like to have that silky smooth feel of a newly shaved leg, but my legs feel so different now. I almost feel every cell on my leg when the wind blows against it. What makes me feel each cell is the odd hair on my leg that has survived the onslaught. It almost stands proud, blowing in the breeze, excited to get noticed.

My skin definitely feels much smoother all around. My nails grow almost before my eyes, I am forever cutting them. The point is ... I FEEL ... the bad and the good. I feel the emotional gloom and doom when I am sick as well as the joy and hope when I am well. I love being well.

I did the deed with my oncologist who surprisingly responded in a professional manner and has moved me over to a new female oncologist who specializes in breast cancer. I have not met her yet, but anything is better than dreading the oncologist consultation as much as the chemo.

Thursday's chemo experience was quite traumatic for me and I am not sure how I am going to face the next 4. I feel that I must be the biggest baby on earth, but I can't help feeling absolutely petrified about the whole thing. It is like the phobia of phobia's kicking in for me. It got to the point that I was telling Hil that I am more frightened of medical stuff than of dying. I have to force myself not to think about it otherwise I already start feeling the panic inside of me. I am seriously considering asking my new oncologist to give me the stats for survival if I had to stop all treatment now, then weigh up the odds.

I know this train of thought scares the shits out of my friends and family, but I have to do what is right for me. My faith is stronger for survival when I am feeling well without poison in me. I really need to pray about this as I feel confused and befucked about the whole thing and I want the decision to come from me and not be advised anymore. I have never felt comfortable with the advice I have gotten up to now and I can't get rid of these nagging doubts of discomfort (.)(.)

Monday, Tuesday ... then W T F

One of my worst nightmares has happened. My veins have given up the ghost. Yesterday was the worst chemo experience ever. They couldn't find a vein that worked as my arteries have hardened, so out of desperation they had to get permission from the oncologist to use my right arm. They are not supposed to use this arm because of the operation. I guess it has to do with interference to the remaining nodes that are still trying to survive. But then again, what do I know - I ain't no doctor. I'm just making an educated guess!!

If they had not gone to the right arm, I was ready to walk out and say fuck it all as I am sure the next option would have been my feet - and that is no joke!! They also can't use the veins near the joints, like by your elbow. I was told that I don't have the best veins in town, and even though I thought they were pumping because I can see them through my skin, the sister showed me in comparison to hers what pumping really is. My veins are too deep.

I was on the verge of hysteria yesterday - crying and shaking uncontrollably. They had to drug me to calm me down. It is important to be calm otherwise the veins contract, and then it is impossible to find anything. One good thing though, I got to go on the bed and with the help of the drugs, slept through the whole thing after that.

I may have no option but go the stint route. This requires a small operation and a foreign object in my body for a year. It seems like a drastic measure considering I only have 4 sessions left and "why a year?" I asked. The answer "You might need to have more chemo after your 6 month test". Oh joy, just what I needed to hear. They are also aware of how I feel about this stint considering my friend Rhona died of septicemia from it when she was going in for a normal chemo treatment!!

Today I have decided that I am also going to fire my oncologist. I just don't warm to him and I am sure he contributed to my already emotional sensitivity that I had prior to going in. I have now finished the "red devil" chemo. The next lot is a new type of chemo which requires a whole lot of new drugs ... of which one of them is 16 cortisone pills per day.

It was hard to comprehend everything - take this 3 times a day, that 2 times a day, this 16 times a day - the drugs all have similar sounding names as well. When we asked him to repeat it for lack of comprehension, he suggested that we perhaps bring a tape recorder the next time. WTF!! If I want him to repeat it 10 times and/or write it down so that I fully understand, then surely I am paying for that privilege.

He has also cost me more unnecessary cost with the R200 a pop puke pill which we had just got another course of as we did not have enough for this last chemo treatment (and they only come in certain pack sizes) - cost R2000. He casually tells us, "oh those are no longer needed, and I am sure your chemist won't take it back"!! WTF!!

When I told him my ongoing concern about my weight gain and bloated feel, he casually says "I have told you to watch what you eat". Then in the next breath tells me to get a kidney test as it is not right that I should be bloated with this session of chemo - "it only happens with the next set of chemo". More joy!!

Right now, all I want to do is go back to bed ... feeling rather miffy and emotional. I have also just received an email joke from Lorraine that sums it all up - A fact of life is that after Monday and Tuesday, even the calendar says W T F! (.)(.)

Talk to the hand ... or forehead!!

It seems ages since I last wrote, and it has been ages. Probably just as well though, my mood swings have been horrendous and not worth sharing. I don't like to spend too much time wondering why I am feeling a certain way, just in case I come up with THE perfect reason ... you know. It does sometimes scare me though when my rages over a stupid incident seems to be out of control.

I'm not currently in a happy space, but I have noticed that this does tend to occur a few days before each treatment. Perhaps it is the dreaded anticipation. I am also feeling fat, bloated, ugly and uncomfortable. Tired too, very tired!! One would have thought a weekend away would have cured this tiredness, but Daphne didn't fail to annoy us last night with her 1am, 2am, 3am and 4am calls. I think she was just being bitchy as a pay-back to leaving her with Tutu over the weekend.

The other night, during one of those Daphne wake-up calls, both Hil and I couldn't get back to sleep, so we chatted for a couple of hours and tried to get back to sleep around 4am - bad decision as you feel like shit the next morning. After about 20 minutes of silence during the "back to sleep" time, I just burst out laughing. Of course Hil wanted to know what I was laughing about. I was thinking about our friend Rhona who died of cancer about 5 years ago. She was divorced and had her first boyfriend just before being diagnosed. Rhona was a beautiful blonde and we couldn't believe the boyfriend she chose - he was a real dog compared to her good looking ex.

What pissed me off about him was that he helped Rhona shave her head and then dumped her because she didn't do it for him anymore. What a cheek when he was no oil painting himself. What made me laugh was that Jordan was only 5 at the time and on first meeting this creep, his first question to him was "Why is your nose so big?" My God, I wanted to die at the time, but now I just think ... precious child! Out of the mouth of babes the most innocent truths come out, unintentionally, but as a grown man, this guy should have known his insensitivity would have hurt Rhona. I'm also not surprised Jordan asked, because none of us could believe how big his nose was. You know when you are really trying not to make eye contact with THE NOSE to make the shock so obvious, but instead the obviousness comes in when you talk to their forehead!! LOL

I took Jordan to school this morning and only remembered half way that I forgot to put a hat on. Jordan generally insists on headgear. When I mentioned "oops" to him, he just said, "well Mom, don't come out of the car and just drive away very fast". He still doesn't like it even though he did say that he has forgotten what I look like with hair.

Other than arm bones and hands aching, which is being helped a lot with physio, not much else happening on the symptom side. Blood tests tomorrow and 4th chemo on Thursday, which at the end will be the half way mark in terms of chemo (.)(.)

Sun Shinny Days

Good Morning DARREN ... hope you survived the traffic and are sitting nice and calm now enjoying your cup of morning coffee!! :-) I felt so great after last night's meeting and it was fantastic to see so many people. You, of course are always our shining beacon with your readily smiley face. ;-)

You see, this is why I make a weekly post now, as I have nothing to say about my cancer journey. Life has gone back to being LIFE on life's terms. I am however looking forward to a weekend away this weekend. No animals, no sleep deprivation. One really needs that break from routine at least once a month. Breakfast buffet, beach, fishing, putt-putt, market visits, afternoon naps, scrabble championship by the pool, a spot of tennis, seafood dinners. Yep, that's what I am after - good quality time with my family. Koekie Koekermoer is coming along too, I sure hope she has practiced her scrabble skills, I do need the competition.

The weekend before each chemo is when I know I will feel my absolute best, so I am thinking that the second weekend after every treatment is going to be an away weekend. I can't believe that Round 4 of chemo is already next Thursday. Oh well, I will officially be at the half way mark then.

Back to the grindstone for now - isn't there a song like that "Like a grindstone cowboy" - maybe not. I read somewhere that a job is what we do for money, but work is what we do for love. I am so grateful that 90% of the work I do I really enjoy, so for me when it is a sun shinny day outside, it is an added bonus. Work, swim, work, eat, work, sleep, work, play (.)(.)