Thursday, February 25, 2010

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 (.)(.)

Tuesday, February 23, 2010

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 (.)(.)

Friday, February 19, 2010

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! (.)(.)

Tuesday, February 16, 2010

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 (.)(.)

Tuesday, February 9, 2010

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 (.)(.)

Friday, February 5, 2010

New Moon Rising

This week gone by I accomplished quite a lot. I klapped the 3rd round of chemo without much strain. Started and completed the fieldwork of a market research project. Went to a tennis and cricket match that Jordan made the team for. Been out on 3 dinner dates. Attempted to re-start my exercise regime with a walk on the beach ... it failed however when my scooter ran out of petrol. Went shopping twice - first round bought me a great pair of track shoes and second round 2 nice hats. Went to physio. Visited the travel agent to start planning our holiday for when treatment is finished, which I worked out should actually all finish around 05 July 2010. I'm not sure how I thought it would all be over by the 01 September, I suppose this is the date I had in my mind for when I expect hair to be on my head.

I also managed to put on another kg ... up to 5kgs now!! I asked the oncologist about this weight thing, and he confirmed that the chemo does slow down the metabolism - which lack of exercise is not helping much. Hence my attempt to get back in the saddle of exercise.

I still believe that the steroids and cortisone are to blame for my healthy appetite which sees me pigging out for up to 4 days after each treatment. I am generally not a pig-out eater, so what other explanation could there be!! It does seem to settle into a normal eating routine from about day 5. The concern and discomfort of the weight gain has accelerated me into action though - i.e. new eating habits and exercise attempts - so this is a good thing.

Chemo experience seems to be getting better. I had the best (Lazy-Boy) seat in the house for the Australian Open Men's Semi-Final. I think I watched all of 2 serves though. I was sitting next to a chatter box, and next thing - I looked up at the TV and the whole match was finished, but so was my chemo visit. It went really quickly this time around and I was extremely grateful to Auntie Chatterbox. I am also becoming quite the pro with the needle routine. Emlo (numbing cream) is my best friend and I am so happy I found it. My white blood cells continue to impress but my veins still ache. The chemo burnt quite a bit this time around. When I asked the sister why, she said she didn't know. I jokingly said that I was glad she was not my oncologist with that kind of response to which she took great offence. Oops!!

My relationship with the oncologist remains a challenge. I find he treats me with contempt. Hil doesn't warm to him either. He has like a patronizing smirk on his face the whole time. You know the kind of face that is slappable. Because I had such a bad 2nd round of chemo, he ended up writing a whole bunch of prescriptions for me, which I might add has really helped as I have had very little symptoms this time around, apart from metal mouth and the slight hangover feel. When I asked him whether any of these drugs he was prescribing are addictive - he went through the list saying no, no, no and ended off with "and I have not found 1 person who has become addicted to chemo!!" I should have said "OMG, you made a joke!!" He actually said that no drugs that I have taken thus far and to do with cancer is addictive. He must have seen my eyebrow raise and read my mind saying "hello ... morphine??" because he answered my thoughts straight away which was quite an eye-opener to me. In fact, I am still wondering if it was an irresponsible explanation from a professional to a recovering addict. He said that not even morphine is addictive if it is administered properly. Huh!! He reckons that people get addicted to the euphoria that morphine creates, but if one doesn't allow the morphine to drop, but keeps it at a constant level, the patient would never feel that euphoria. Interesting.

One thing he did make me feel better about is when I told him that I don't seem to have the same faith as other people when it comes to chemo "saving my life" and I was in fact pissed off about having to take it. He confirmed that I have every right to be pissed off and that it was normal for me to feel that way because I was taking it for preventative purposes and could not see the results of my efforts. So that made me feel a bit better. Somehow, getting it all out (bitching and moaning) seems to have changed my perspective a bit as I am working with my treatment and allowing it to fit in with MY LIFE. I make the most of and look forward to the 2 weeks in between treatments when I feel really well.

I have become quite comfortable with my baldness, although other people remain to be uncomfortable. I have realised that their discomfort is probably still related to not knowing how to handle the subject of cancer, which clearly is what my baldness indicates - either that or they don't know how to tell me how strange I look. I find myself playing with it now - you know, shock tactics. Like when I went hat shopping. It is nothing for me to take off my bandanna and try on hats. But when I saw a young girl do a double take with a gasp, I immediately stared back at her so that she had no option but to face her own discomfort, to which she realized she had been caught out and could do nothing else but sheepishly smile at me. I then continued as though it was the most normal thing for me to be.

My little dog Emily has become so protective over me that she even growled at Amy who also wanted to get close to me on the couch - it is so unlike Emily to do something like that ... fight with Amy. Emily follows me everywhere, afternoon naps, office, couch. I wonder if she senses something different in me.

I have never been a vampire movie fan - like New Moon Rising, True Blood, etc - but I have noticed lately that I tend to admire other people's arm veins. Imagine the fantasy world I would be living in if I were a fan of those movies!!!

My week also included the exciting news of a new addition to our family soon - yep I am going to be a Great Aunt ... sorry Kerry, I couldn't resist putting out another advertisement (.)(.)