My battle with Breast Cancer
Sonia's update page - for friends and family
Latest diary entry at top, runs backwards historically down the page.
Monday 31st July: Lumps not bothering me today, don't seem so large either - wierd but yay... Well I really did stuff my back with that fall. Upper and lower!?! Good ol' Dr James Watt is a miracle worker, that's for sure, I'd popped my spine is about 9 places?! Gotta have physio and more manipulation etc - hope it fixes by Fiji - still sore now, but different. Got first massage tomorrow just after midday. Vitamin C in the morning.
Sunday 30th July: Back getting worse each day - owwweeeeee :o/ !!! Appointment not till Monday afternoon - can I wait that long? Lumpy area seems to be growing - is that in my mind? Messes with my head sometimes having these lumps still there...
Friday 28th July: Well, silly me did the old socks on carpet steps trick last night grrr and landed heavily on my left arm - exactly NOT what I should be doing at the mo, so back is a bit off today - not big pain, just off, niggly, so booked to see the guy again on Monday afternoon. After the fall, I yelled out an expletive, couldn't help it, was so p'd off at myself for being so stupid, my back had been fantastic for over a day :o/!!!
Vit C wasn't much fun again this morning - I just get very distressed with it for some reason, veins are slow, so the fluid builds up in my arm and hand and then my whole body goes into distress. Aaarrrgh! My vit c levels had dropped which means my body's sucking it up, so they upped my dose again to 140mg. I'm feeling more positive after my vit C after talking to the lady beside me today - she had double mastectomy and no chemo or radiation, ended up with cancer in her bones, and since vitc started last September, the cancer is disappearing! Woohoo! That's what I like to hear ;o)
Tuesday 25th July: Had Vitamin C in the morning. My back pain has become acute - managed to get appointment with my back specialist in the afternoon. Well my spine was out in 3 places! Thanks to a wayward chest bone. My specialist reckoned my body would be behaving all unevenly after the surgery, radiation etc - affecting all the muscles, my left side working differently to my right. Then when I started all this mega coughing fit business - the spine just went BANG! Anyway, he's put it all back into position and we have to hope it stays that way. Still sore from all the manipulation, and feeling emotional, so had a lie-down on the floor watching a comedy. Still not right - so back to specialist tomorrow :o(
24th July: Just got the Breast Cancer Research questionnaire today
from Massey University. Have to say I'm a bit sceptical of it so far, just
seems to be interested in body shape and size, eating and exercise habits
etc. No stress related questions. They put a note on the front saying no
they aren't breaking down into HER2 + and -, which I think is silly...
they are such different cancers, surely causes could also differ.
Meeting with my Oncologist in the evening. Lucky I thought to take all my CT slides with me - thats what he wanted!?! Upshot is nodes have definately shrunk down (this is the same old good news, nothing new), which is good, but no-one knows if there are still active cancerous cells inside what's left, so its wait and see. He said they are a useful marker as to what's happening in me - I can think of other words for them @#*!@#! LOL Anyway, its wait and see time, he kept my slides saying it'll be plugged into the hospital system, and I now just wait for my appointments to turn up. And enjoy my holiday! Other interesting thing he said was about brachytherapy. He said that its used in primary lumps not secondary ones like mine, and is used at beginning of radiation. Not really an option for me. But to anyone else embarking on first diagnosis of BC, ask the question, as I think its a good thing from what I've heard. I wish we could use it, but he said no as my lumps are markers, if they nuke those with the brachytherapy, then it'll be harder to know what's happening. I can definately feel a small hard lump that I couldn't before, but maybe its my bigger one now smaller - hard to describe, but maybe... anyway... #shrugs# time to just get fit and go on holiday ;o)
Sunday 23rd July: Have had a bad few
days where I feel like the lumps are growing arrrgh! Comes and goes... I
have to keep reminding myself how the radiation keeps working and has
affected the tissue around the lumps... I just get scared and worried
sometimes, wish this was all just a bad dream :o/ My eyesight is still
stuffed. I got it from the Taxotere, was told it was fluid retention in my
eye and it would go away, still waiting for that one! Can't read clothing
care labels anymore or thread a needle!?!
Thursday 20th July: Still sick. A sad day for my support network. My record-breaking thread on the TradeMe message board, that gave me and other cancer sufferers such great support was voted off by some juvenile knobs who wanted their thread to be the biggest?! My thread was sitting at approximately 5,331 posts! Fortunately a fellow trader (who thought the thread was awesome copied the entire contents (save the last 2 days) and I was able to recreate the thread! So now it's immortal :o) http://www.tyler-davies.co.nz/TradeMe/CancerSuxs1.htm I immediately started a new thread, it passed 500 posts in 5 days :o) It keeps me and my fellow traders sane :o)
Wednesday 19th July: Woke up totally crook :o( Had to cancel Coffee Group. Went to docs. Was put on antibiotics to be safe, given my medical situation generally.
Tuesday 18th July: Vitamin C day again. The infusion takes a good couple of hours (I go twice a week) and I actually find the infusion hard going, think my veins are stuffed from the chemo etc, so I'm not comfortable, but everyone else there seems completely unbothered by it! So I feel tired and achy at the end but about 5-10 mins later I feel fine. So today I woke up with a cough and it got worse and worse and I lost my voice by end of treatment - I was looking like I'd have to retire to bed!?! Well, an hour later, voice is back, cough is gone, feel great ;o) So its good powerful stuff! I'm still working up the the full dose, I'm expecting that once I get up to there, I won't get coughs to start with ;o)
Voice went back to dodgy in the afternoon. But then I've been up till midnight the past few nights, tidying the house, doing loads of washing etc. Silly me. Hopefully will kick it overnight tonight (will take it easy ;o) as I'm hosting coffee group here tomorrow! Don't want to cancel it!?!
Monday 17th July: Lydia wet her bed during the night(she never does that), spent rest of night in Em's bed (!) so waiting to see what presents itself with her (hope its not a bladder infection). Girls just gone to school and creche with Daddy so I'm off now to scout scrapbooking stores this morning, with my mobile on in case school/creche calls. Looking for really nice albums, they seem to be thin on the ground... fingers crossed! I had a constructive morning - spent 1.5 hours in a scrapbooking shop pouring through catalogues of albums (and examining their extensive in-store range) and finally decided on the album I want. I was hoping to get the girls different albums, but I only like 1 style! So going to make a personalised storage box for each to go in. Anyway, they're mega-pricey, particularly when you add the pages, embellishments etc, so I got down a list of what I want and am getting 2 stores to quote me to supply the lot. Will be interesting to see if any haggling can be done. Anyway, feels good knowing the colourways I can use (lots of bright cheery colours which is what I like). Have awful back pain (upper spine) tonight so need to stay mobile. Purple stuff is helping...
Sunday 16th July: Can still feel the lumps but at least they don't feel like they're growing - putting all hope in Vitamin C infusions at the mo. The radiated (and lumpy) area had all sorts of twinges, pains, tenderness etc from time to time. I keep telling myself its the radiated tissue, not the lumps doing that. Fingers crossed...
Monday 10th July: Yowsa! Had an attempted blood test this afternoon (to monitor Vitamin C absorption). He tried once in usual spot, then another time off my hand - nada :o/!!! I said flag it till Wednesday - I realised that I've have very little water today (unusual for me) so upping that as of now! Silly me... *slaps wrist* Apparently high vitamin C levels requires an uptake of water consumption too for some reason...
Anyway the morning was very special. I have been talking online now for quite a while with the mother of a dear 8 year old boy with Fanconi Anemia. Well today we met for the first time in person and it was lovely (she gave us tickets to a Cinderella stage show tomorrow that they can't make it to :o) Her son Ryan is such a star (here's his story online). His hair has grown back after his chemotherapy and looks fab but he had found it hard losing it (and didn't like the way it grew back!). So, I took off my wig to show him how much better his hair looks than mine! He was fascinated and later told his mum "I didn't know Sonia wore a wig, that's cool maybe I should get one like that." Then he changed his mind and said "Do they make ones with mohawks?" While I was there he was telling me about how he wants an earring in his ear (but can't due to his anemia). Tonight, after thinking about the wig thing some more he put his finger in the air and said to his Mum, "I have a good idea while I'm in hospital I should get a wig ear that has a ear ring in it!" How classic is that?!
I met them in at Starship hospital where he was getting yet another blood transfusion. His blood type is O- (same as mine, but now I have cancer I can't donate blood anymore...) Everyone who can donate blood - I sure hope you're doing so, for the sake of special children like Ryan :o)
Sunday 9th July: Went for a very rare outing - to the movies! Saw Superman Returns - excellent movie :o) I was talking to a friend on the phone tonight that I haven't spoken with in about 3 weeks, and of course she was asking where I was with everything and such. While I was filling her in it hit me how, when talking like that, it seems like its all I think about and am doing, but its not!?! Life's so normal in a lot of ways right now. But everyone around me things its not! If only I could convey that to others. Oh well, it was nice having a chat :o)
Wednesday 5th July: Had my first Vitamin C infusion this afternoon - It's like chemo infusions but you feel good after - am I mad going for this 2 days a week?! Doing again Friday afternoon this week and from next week every Tues and Thurs at 10am. I think it will be a couple of months on 2-weeklies and then it steps down to maintenance, like weekly, then fortnightly. Will check that out on Friday (can't find my assessment letter from them, of course!?!). $75 a time.... No real side-effects, except maybe bruising at the site of the infusion. It's good for healing, boosting your immune system, basically makes your body's own cells super-healthy. The vitamin C, absorbed in high doses, overwhelms the cancerous cells who convert it to hydrogen peroxide (bleach) and can't break it down and supposedly self-destruct. I have regular blood tests like I had with chemo to check the levels in the blood. It's quite expensive when you do the maths, but way cheaper than the Taxotere chemo that made me feel AWFUL and did absolutely nothing! So I'm in... ;o) Different kinds of people in there - the more desperate kind, have to keep reminding myself that I'm not one of them - yet! The infusion went through the vein in my hand that my chemo went through - its still as good as ever (touch wood ;o) They treated me nicely, hottie under the arm etc. Took about an hour - but its location means afternoons long term not ideal - came out straight into Newmarket's rush hour - not pretty! Apparently there's a place in Milford starting up soon, may convert later, we'll see how it goes...
If you're interested in finding out more about
alternative options such as this, for fighting cancer refer to around page
17 of this very interesting doc:
Tuesday 4th July: Appointment with Dr Benjamin went fine. Benji was very happy with the lumpy area, says all shrinking down well, reckons the one that looks like it has grown a bit (on the last CT) had grown after the last CT and has actually shrunk as well (must be, he reckons, as its in the majorly zapped area and everything else around it has shrunk). Hmmmm... we'll see! He is however concerned about the little whatever-it-is that has appeared in my liver. Says that will determine next course of action, so we have to wait the now 7 weeks until the planned ultrasound. He said go ahead with Vitamin C infusions now - will help healing (have first one booked for tomorrow). Go on holiday etc. I said surely if my CA153 is only 19 then the liver thing can't be cancer? He said not necessarily! Some cancers don't show up at all on the CA153. Excellent - thanks for that :o/!!! Oh well, won't worry till there's definitely something to worry about. Glad he's happy with the local recurrence area :o)
Monday 3rd July: Managed to reschedule Dr Benji's appointment forward to Tuesday at 6pm (nanny can look after girls then). I'm sure I won't forget it after what happened on Saturday, but if anyone feels like reminding me by email or phone - cool :o) This is a mega -important meeting for several reasons, so gotta get there! Taking my CT scan slides with me.
Sunday 2nd July: We've had a rough time with the girls today, don't know what's wrong with Emily - she's been a trial all day so guess we're off to the docs tomorrow. Lydia burst into tears out of the blue tonight as I was singing goodnight to her. She said she was "worried about my boobie getting worser" - its a tough one to navigate. I said to her something like "Don't worry about that, its not getting any worse yet, I told you the lumps are shrinking, so that's good. I promise I'll tell you if things get worse, but you don't have to worry about that now." It was a bit more cuddly and explanatory than that, but that's the gist of it. It's the hardest part of this - the girls overhear conversations we have with other adults, we have to watch that. I'm not misleading them though, just measured doses of the truth - on a need-to-know basis - no lies.
Have decided we're going to Fiji next month - woohoo! Gotta organise pronto! Also Brent's big 40th - hmmm what to do???
Saturday 1st July: Spent two hours ironing last night trying to catch up (Girls have been sick last few days, and Brent was away too, so things have been falling behind - not that he does much when he's here LOL). We all slept in this morning and kids were grumpy - still a little sick probably. Also my iPAQ had crapped out yesterday and we still hadn't managed to get it going again - has ALL my appointments in it?! So, with all the above, guess who forgot her appointment with my radiologist this morning?!?! ME! Br Benjamin called me half an hour later to tell me! How weird - talking all week about how this appointment was today - its such an important one - and... d'oh! I'm so annoyed with myself *fume* *fester*!@#*!. Rescheduled to Wednesday morning - Brent's away again then so will have to take girls with me?! So instead of going to my mega-important meeting *slaps back of hand one more time* I took the girls out to buy Lydia her ballet outfit - she starts ballet lessons in a few weeks (I never got to go to any dance classes as a kid so I'm thrilled for her :o) She looks gorgeous in the little leotard and skirt etc uniform - I got so excited I bought her the works, even a silk tote bag with ballet shoes printed on the front LOL. She's rapt! Emily wanted to go to classes too but I told her she's starting swimming and that made her happy (hasn't been able to go to that till now because of her ears). Their classes are at the same early time on Saturday, so Brent and I will each take one kid ;o)
Thursday 29th June: Booked my first Vitamin C infusion for Monday, assuming Dr Benjamin doesn't tell me I can't do it (seeing him this Saturday).
Got a call from the Breast Surgeon's nurse this morning telling me my Blood test results for my CA153 is 19 (this is the marker that indicates whether cancer is on the move in my blood). I asked is that OK? She said "I dunno, its not bad, depends what your last one was". Excellent! So far they've only told me its OK, not what the number is?! I have kind of assumed that my surgeon would have rung instead if it was bad. Looked back through my file - no mention of last numbers... will start noting my numbers down for future ;o) A friend of mine on the message board told me a lady she knew had hers go from 69 to 344 which meant cancer was on the go, so compared to that, I'm pretty sure I'm fine (touch wood!).
Wednesday 28th June: Both girls and me now a bit sick with cold - Lydia has it the worst - her throat and ear are red - got worse later in afternoon so now on antibiotics!?! We all went to the doc's this morning - my never ending period (been going full-on for 2 weeks now) is apparently just result of my body's imbalance after all its been put through (chemotherapy etc), and I just have to "ride it out". If still going after another 4 weeks then they'll look further. Lucky me!?! So the soreness I referred to on Saturday, if CT is correct, must be the damage to surrounding tissue from the radiation. I hadn't noticed before, but I have a radiation tan on my back in the shape of the second lot of radiation (that was done on my front), which means it went right through me!? No wonder the whole area feels sore and weird, its like I've been fried on a BBQ there or something! Anyway, been a busy few days - Brent's been overseas last few days - back tonight - yay!
Monday 26th June: Was "Judgement Day" -
the big meeting with Dr Cacala my breast surgeon. Turns out the CT scan
results were not so bad thank goodness! Basically the CT (which is 1000
times more accurate than an ultrasound apparently) shows most lumps have
shrunk or disappeared - largest is now 2.1 x 1.7cm (was about 3cm). One
lone nodule has increased in size (this one may just be swollen and may
shrink later). No new lumps identified (Everyone now - WOOHOO!) So the
lumps could well be necrotic, dying etc, too early to tell...
There were 2 items of note: There is an 8mmm something in my liver, may have been there before, not noted before though, will check this in 8 weeks time by ultrasound (which is better at determining whether a cyst or a tumor)... If tumor, operation / chemo options. There is also a 42mm cyst - possibly ovarian cyst, also to be checked. I was told not to worry about these yet. Wait to see what they are.
My specialist told me by all means try the vitamin C injections. Next: I am to arrange to meet Dr Benjamin again to discuss results with him. Ultrasound being booked for 8 weeks time. Other than that, its just wait for radiation to continue its magic, then I guess do another CT scan. Operation is not an option yet, as the whole radiated area would not heal if we operated now (as she put it "If you pierced that area now, you'd just be left with huge gaping, oozing hole..."). Hmmmm... Nice...!!!
Saturday 24th June: Ok so getting pretty sore in lumpy area, dammit. They grow fast! Has upset me a bit today, but not too much. Researching away on the supplements, got more leads which is good. Have decided I will do the Vitamin C injections - what the hell.... also going to ask about Brachytherapy on Monday if they say, as I suspect, that surgery is no longer an option. Have found a place in Auckland that does it and guess who's name is there - Dr Benjamin's LOL Amazing how all these docs have their thumbs in so many pies!
Friday 23rd June: Had a supplements person (Karen) visit me at 1.30. She's a Usana distributor so I was skeptical. But by end of meeting found out she was giving it to me at distributor price so not much in for her at all. She recommended a list of things which I will now sit down and work out and compare with what others have said. Lot of familiar things though like selenium etc. She works for the specialist I've been wanting to see for ages (but she was booked out for months which is why I saw that other guy Dr Leung back on 15 May) so Karen said she'll get me slipped in to see her ;o) Its funny how she found me - she had just joined Skype and was flipping through all the names (of which there are thousands!) and my one jumped out to her for some reason (so the story goes), she clicked on my profile, saw my web address, went in, saw my BC diary and got engrossed. Funny thing is, she then emailed me around the exact same time I was driving in my car thinking "I really have to get sorted on these supplements and make some decisions" - when I got home - there was her email! What was holding me back was being worried I was being fleeced for $$$$ by distributors. Now it seems I have a good answer to that ;o) I don't always believe in signs these days, but wow, what a coincidence the way this played out?! That's the way she sees it and is all fired up to help me. Very cool :o) However this whole Usana thing really clouds things - its MLM - are their products the real deal??? Hmmmm.... They have CoQuinone instead of CoQ10 and reckon it absorbs infinitely better that CoQ10. But then they would say that?! Have been searching the net trying to find independent advice... no luck so far!?!
Wednesday 21st June: Sh#t! Just got back from ultrasound - no good news I'm afraid. Where once there were 8 lumps now there are 12 - biggest 3cm!!!!! Looks like radiation was little help after all - I'm stunned actually - I had such faith in it!?! I rang my specialist once I got home to see what her first thoughts were - she wanted to see the results. She suggested maybe the lumps have died inside and the rest has gone necrotic but given there are new lumps.... can't be quite that hopeful. Booking meeting with her for Monday and the CT scan has been brought forward to ASAP. (To quote Lydia...) Drats and Bothers! Don't hear any fat ladies singing yet though... I will fight fight fight!
Tuesday 20th June: Second-to-last radiation treatment today. My side effects are very few, little tired maybe (not as much as I was expecting from the way they carried on) and just the skin troubles, but then that was because they were treating close to my skin surface. The treatment I'm having now is deeper and my skin is sweet as ;o)
Monday 19th June: Feeling better again today, even though can still feel the lumps. Saw Dr Benjamin this morning before my treatment and he stunned me a bit by implying that there was no planned further radiation if there are new lumps there. I suggested they were just the old ones not blasted enough but he dismissed that possibility. He said surgery probably next. Cancer Society nurse visited me at home after that and we talked it all through. I just hate all the question marks floating around, but guess that's the new permanent reality for me. Probably much better than a definite negative, so that's my new attitude to it, if its not bad news, that's good ;o)
Saturday 17th June: Just felt some new definite hard lumps in low blast treated area. Bummer! Now I'm officially scared! (And glad the ultrasound is coming up) :o/
Thursday 15th June: Yesterday breast area felt all lumpy so I was worried, today, all normal again :o) Weird...! I jumped back on the exercycle today, ready to build up the exercising now.
Wednesday 14th June: Can't believe how stupid I am?! I still have 5 radiation treatments to go! Silly silly me forgot to cross out all the days that didn't happen because of the strikes so when I thought I'd done 44 treatments I'd only done 39?! D'oh! #shrugs# I don't mind, when the therapist told me and said "Oh you must be so disappointed!" I said "No actually, I was nervous about stopping as it means nobody's attacking the little monsters in there any more!?!" She nodded and said many feel like that. Guess it depends on whether people have lumps or not. If I didn't it would be a totally different feeling! I'd just be sooo glad to have my mornings back, and it would be all over ;o) Sadly not for me, but hopefully some positive news is ahead. Fingers crossed...
Tuesday 13th June: Took it easy today, and just ended up feeling paranoid and upset - too much time on hands not a good thing it would seem! So back to busy busy busy! Had my bloodtest and booked ultrasound for next Wednesday morning. Looks like my final zap is on for tomorrow (touch wood).
Monday 12th June: Oh boy what a day it is here - all Auckland out of power, guess its best it happened on a strike day, as far as radiation is concerned ;o) Dr Benjamin was all out of sorts because of the cuts, saying to receptionists to cancel all appointments unless drastically urgent - as rooms were dark - they weren't that dark though, had natural light, I think that was silly... Anyway... got to see him and on the future surgery thing he sits halfway between my breast surgeon and my oncologist. He says surgery possible if small contained lumps are left. Yay that's what I thought! If they're not contained though... oh please may they be contained?! He said the CT scan should be more like 6 weeks away, but after I pushed him he agreed that an ultrasound next week was a good idea to see what's happening - have to do it privately though. He said my previously big lump is still there but much smaller and a softer consistency, things can still happen there, still not quite 4 weeks since last mega blast - effects keep going past 4 weeks he reckons. So I'm happy as is possible in current situation.
Went out shopping after seeing Dr Benjamin to get some caps (to keep the head warm!). Luckily found 2 funky ones hugely discounted ($4.95 each!) so snapped them up and got one more half cap half knitted number - felt nice on the tender scalp! So many of the hats are made for teeny tiny heads (which I don't have LOL) which is frustrating. Got more stares today walking around with my ultra short hairdo, I just smiled back ;o) No one ever gave me a second glance before now when I was wearing the wig!
Sunday 11th June: Was having a great time playing with the girls till I whacked my head on a sharp corner drawing blood ?! Had to put an icepack on my newly hair dressed head! Not a good look LOL! I don't have the same protection now without the wig!?! Stayed sore, I did lie down with icepack on it, fortunately Brent got home right after it happened and took over with the girls. Banged it again in the evening! Yowsa I am a bit of a Klutz!
Saturday 10th June: Went to hairdressers today! (First time since the big cut back in September last year!) Now I have my new own hair - amazing what some colour does, looks like I have so much more! Its very short, kind of like Kylie Minogue's now, slightly darker colour (reddish brown). He cut all the fuzzy ends off - which was difficult for me given how long its taken to get to that length! Looks quite funky though ;o) Think my face needs longer hair, but can kind of pull it off! I went around the mall afterwards with my wig in a carry bag ;o) When I got outside though - brrrrrr! Need to buy me a couple of cool wooly caps to see me through. Kind of ready to ditch the wig ;o) for the mo anyway. May be needing it again in a few months!?! The hair grows at the normal rate once it gets started, and when its this short - its doesn't seem fast enough! I'm stoked today though - big improvement ;o)
Friday 9th June: Supposed to be my very last radiation blast today - but as first day of radiation therapists strike, didn't happen. Grrrr!
had the big Oncology meeting this morning - what can I say, oncology
meetings are rarely good! In some ways there was no-so-good news, in other
ways hope, so overall I'm about the same coming out as going in, except a
lot wiser about my options, so that's a good thing ;o) So, in a nutshell,
some out-takes are:
* The fact the cancer came back so soon (usually it happens a few years down track, not months as in my case!) is not good, means its a "pretty aggressive bugger" (his words).
* I used the best chemo's they have and they didn't work as well as we'd have liked them to (understatement LOL). That said, there are some different types of chemo that work in different ways, and there are new drugs which taken together with them could work some magic by cutting off blood supply to the tumors or something. Its early days in research but indications are promising. I'd be a guinea pig it seems.
* He felt my whole problem area and said "there's still some stuff there, but hard to tell whether swelling/scar tissue or remains of the lumps". Scans needed to ascertain what remains. Given a lot of other areas discussed, it makes sense to now wait the 4 weeks till the CT scan. [I will push Dr Benjamin on Monday that that be four weeks from today]. The lumps are definitely much smaller these days, for him to have said that by the way... Before the big radiation blasts, docs would just point straight at where the lumps are - they were so big, but not now! Also its only 3 weeks since mega blasts finished, so more improvements can still be hoped for.
* Reason for caution with radiation blasts is that the body can only take so much, and the area "remembers it" for a long time afterwards. Doing a mega blast on a big area can mean the body never recovers (just falls apart or something), so that's why they do smaller areas as they did with me. Best thing to do from now is to wait until CT scan of whole area (and rest of body) to see what's what. I'm happy with that now that I understand that better.
* Surgery is NOT a good option, could make things worse, cancer may get into wound and it never heals etc. CT will determine feasibility.
* We discussed Vitamin C injections and supplements etc. After much discussion, his final position was "they wont make the cancer worse, but they may help" so its OK (neither encouraged nor discouraged) to start trying the alternatives, best to take one supplement at a time for a while and see how I feel. So that's what I'll do. Here's the bible website on the topic (recommended to me by the Cancer Society), which I'll have another look at ASAP with the leads I have.
* Finishing this radiation is the current plan, rest depends on next CT scan results, so I'll see him again in one month (i.e. shortly after the CT). All fingers and toes crossed please :o)
It's not easy facing your own mortality, and this has been one of those days... Here's hoping for a better one tomorrow!
Thursday 8th June: The Radiation Therapists strike starts tomorrow. Its ironic that these people who got into this field because they wanted to help cancer patients, choose this line of action. Literally hundreds of people like me are treated every day. How this affects us longer term, we may never know, but we'll always wonder :o/
Wednesday 7th June: Finally managed to call my specialist (Shas' nurse actually). They just said it's up to Dr Benjamin to address most of my concerns re getting an ultrasound and the future CT scan date. I was told to discuss it all with my Oncologist on Friday and if he agrees with me to do an ultrasound then they'll happily do it. And if I still want to see Shas, that's OK too. But it was left to discuss with Oncologist - given that's only 2 days away now. As for Friday, I've come to the place where I don't care what they do as long as it stops the monster dead in its tracks - they can chop out part of my ribcage if they want to! Its funny how different my mentality is about it all now - when first lump found, all I was concerned about was losing my boob, I thought that was a disaster! Guess I'm just climbing up the ladder of acceptance LOL Yes I have a lot to fight for, so on with the boxing gloves and off I go ;o)
Tuesday 6th June: I spent a lot of yesterday gardening, repotting plants, weeding etc etc and rest of time catching up on chores, washing etc etc. Was so tired last night I just crashed in front of the TV (Not something I do often these days!). Anyway.... my skin is healing up beautifully, doesn't look at all angry anymore - technicians were most surprised this morning saying WOW its healing well, so that's good :o)
Downside, stupid public system... my booked appointment with Dr Benji was yesterday but because it was a public holiday it didn't happen and (as he's only there on Mondays) we all simply have to hang out for another 2 weeks?! What a load of garbage - why'd they make an appointment on a Public Holiday in the first place?! So that means I last saw him 2 weeks ago, those that saw him last week, will see him again next week, but I can't until the week after?! Then, on top of that, I realised that my last treatment should be this Friday (first day of therapists 3.5 day strike) so end of treatment will be delayed 6 days for me to get just one more zap. Nope, not on peoples!!!! Will call Breast Surgeon nurse after all today, she called to say my surgeon is on holiday, but I'm hoping she's back today. I think I'll demand that the end of treatment is dated from this Friday, for the 4 week wait till CT scan, not after the stupid week later last blast. That's the best I can demand really...
I had a wonderful treat this afternoon, went for a facial (shouted for me by brother Richard and Michelle - thanks sooooo much guys ;o). It was awesome - the rest of the day had been a shambles - traffic jams, I've even lost my keys (all of them!) and couldn't find them ANYWHERE?! Had to use spare car keys to get to appointment ;o/!!!! Felt fantastic afterwards, even got my eyebrows (what there are of them LOL) trimmed and tinted ;o) This treat was just the ticket - thanks guys!
Sunday 4th June: Cancer and stress. The two are definitely intertwined! To that end I saw a cd in the supermarket this evening (Electric Dreams) and saw it has heaps of oldies I still just LOVE to hear and sing along to (Title song, plus Ultravox Vienna, etc etc etc), so bought it, put both disks straight in the car. Now I have lots of lovely music to sing away to on my way to radiation each day. Can't wait to play them all... :o)
Saturday 5th June: Went to a GREAT party tonight - had a ball. Will save the details to next webpage update ;o) The night out was great for Brent and I - must get out more often, whenever we can!
Friday 2nd June: My second counselling session today was interesting, very constructive - I have two issues to address until next time. I was just thinking the other day how at the time I had the op I was horrified at how I looked, but now I'm more than happy with it! I used to wear a prosthesis religiously (as soon as I could) for ages until a month or two ago, and now, quite frankly can't be bothered putting it back in, except on special occasions ;o)
Thursday 1st June: Feeling much better today and, wouldn't you know it, can't feel lumps now - they come and go, so think I'll brave it alone with Dr Benji and just ask lots more questions ;o) Must be scar tissue, hopefully ;o) Burns healing fab now - No worries ;o) Skin has formed now over most of the wound - hopefully will be all covered in next few days :o) The area being treated now is still perfectly fine (touch wood), just slightly pink now, so no bandaging etc needed there. Just lots of cream...
Its funny, I've been noticing recently that I've been having these incredibly vivid, real and extreme dreams (I'm not usually much of a dreamer LOL) and only just twigged that its the melatonin I'm taking that's causing it. It's bizarre that something that is a celebrated natural sleeping pill, has this as a possible side-effect!?! (It is a documented side effect). Now not sure whether that means I'm taking too much (only taking one pill), don't really need it or if this is actually a good thing?! More googling required ;o)
Wednesday 31st May: A down day today. Got a call from my Oncologists nurse today saying he wants me AND Brent to come and see him next Friday morning for a BIG chat. Got me all nervous now - think I've been back in denial mode lately. Now the butterflies are fluttering!? Dora the nurse is a bit of a nightmare really, she's always so serious, you can't help but worry!?!
And then when changing my dressing early this afternoon it felt all lumpy below my stitches line again. Really think that area needs more zapping... I'm not really worried about the oncology appointment now. I'm worried about the lumps I can feel! Just had a weep session after talking to Cancer nurse who called me 2.15ish to see how things were going. She was great, I'm just worried. Guess you've got to have the odd day like this. Have left a message with my breast surgeon to see whether she thinks an ultrasound is in order, but she hasn't called back yet.
The good news is that my mega-zapped area is finally looking to be on the mend - new skin definitely starting to form now - not so ouchy!
Monday 29th May: Didn't get to see the doc today as he was too busy (my next appointment with him isn't till next Monday - isn't that a public holiday?!) but that's OK can't really feel any lumps in that area today, hopefully it's just scar tissue after all. Did see another doc and nurse about my burn, its not pretty! Apparently will take 2 more weeks to heal over, just heaps more aqueous cream and dressings till then - and I have to wet the area to remove the dressing when changing so I don't tear of the new skin cells. Learning lots about the workings of the human body through this whole exercise ;o)
Seem to now be locked into 9.30 am-ish time slot which is working well - now I have time for a few errands /coffee with a pal before picking Emily up :o)
Sunday 28th May: Nasty area getting worse - bleeding now! Definitely seeing nurses on Monday. Those hard-ish lumps I felt yesterday that sent me into a panicking tailspin are not obvious today #shrugs# much ado about nothing maybe? And so the rollercoaster continues to twist and turn... Will feel that area again tomorrow. Feeling pretty good otherwise :o)
9 treatments to go, however thanks to another planned therapists strike (2.5 days!) in the week after this one, plus yet another public holiday will be 2.5 weeks to completion). [Also, if I'm not mistaken, it means that that week I may well only get 1 zap!?!] Grrrrrrrrr!!!! Will be asking tomorrow how I can protest about this. I find it ironic that there's a breast cancer radio ad on at the moment and the leading story message with it is a trainee radiologist saying how excited she is to get into training course to become a radiation therapist, how she wants to help cancer patients etc etc. Kind of in-the-face conflicting message (i.e. that therapists are in the business because they care about helping us) with what's going on at the mo with these strikes (which as I see it threaten the success of the treatment)...
Saturday 27th May: The mega blasted area is pretty nasty, yellow goo keeps being discharged, changing dressing 6 times a day, but rest is healing well. Can now feel 2 hardish bits in finshed area - not sure whether scar tissue or lumps (that were there before) so will be asking more questions on Monday. Feeling bummed about this discovery, but one of my pals on the MB said its probably scar tissue being in the radiation site - sure hope so! :o/ !!!
Friday 26th May: My skin is healing very well except for the high boost area which is raw red. Onto Panadols now - nurses orders. Nurse took a swab, results Monday. Still PILING on the aqueous cream and covering with gauze bandage - a real classy look !?!
Monday 22nd May: I got my good news confirmed today that tumors are indeed shrinking - the doc looked most pleased :o) I tried to push an extra zap and the ultrasound and he said NO to both! He said the lumps usually swell up a bit before they shrink down and looking now (with the ultrasound) would cause unnecessary disappointment. He described how the whole shrinking process takes a good few weeks after treatment, so I have to be patient!! He was very pleased with my lumps though ("looks very promising"), so I decided to give him the benefit of the doubt #runs off to cancel ultrasound#...
Weird thing was though that when I asked him about supplements he said NO to all! He said "feeding the body also feeds the cancer". Then he told me to "just eat lots of apples, oranges, chicken and fish" (which I'm doing anyway) but I'm confused, isn't that feeding the body too??? Seems everyone has a different view on this :o/!!! I'm sitting down later today and nutting this all out ;o)
My skin is looking very unhappy now (very dark and peeling off) so they sent me off to a nurse who applied aqueous cream like you do icing in a cake (so that means I definitely haven't been putting enough on LOL) and put a big gauze pad over the top. Will have to do that several times a day for the next few days. I realised (when she was sterilising the area first) why this burning my skin off isn't bothering me too much - it's because I'm all numb there - thank goodness it would seem! [For those who are avoiding mammograms "because they hurt" check out my radiation burn for yourself! (cropped to maintain decency!)] Remember ladies "Early detection is your best protection!"
Sunday 21st May: Today my chemo-induced menopause officially reversed. I'm thinking that's a good thing cancer-wise but will call oncologist soon to make sure.
Saturday 20th May: So for anyone who's seen Kylie Minogue recently, yes my hair is growing back, but it doesn't look as good as hers! LOL! (Kylie's about 4 months ahead of me in this whole thing, plus she had the opposite type of breast cancer - there are about 12 types). My hair is a bit longer than hers but thinner (which is my tendency anyway sadly). I'm sure Kylie has had it cut to thicken, which is what I'll be getting done soon. This new hair I have now is slightly over 1 inch long perhaps (many different lengths!). There's also a lot of grey in there so will be dying it, as Kylie has! This is my second phase hair, only about 6 weeks old maybe - hair grew back during my second chemo treatment, but that was "just chemo hair" and fell out as this new hair came in. Now its cold, I'm sticking with the wig! LOL!
Thursday 18th May: I have found the
attached paper (a word document) extremely interesting reading - it covers
the wide variety of known ways to combat cancer. Everything from how you
breathe to what you eat, medical solutions etc etc. Excellent information
for those who have cancer and those who want to avoid getting it!
Cancer - A Threat to your life or a chance to take control of your future Check out section 3 for starters, gives you a good idea of what this doc contains :o)
Wednesday 17th May: THE CASE OF THE INCREDIBLE SHRINKING TUMOR! I almost can't believe it - my biggest lumps feel like they are indeed shrinking! Its amazing - I've suddenly gone from "Man I hate that I can feel that!" to "Umm... where's it gone?!" Well, to be more exact it now feels like it did about 2 months ago, when it felt hard but not like lumps. This was day 3 of the 5 mega blasts. Its looking good as far as I can tell #SMILES# :o)
I was so distracted by this good news, countered with Emily throwing a fit this morning, that in my rush to get out the door, I didn't realise (till I was in car in town on way to hospital) that I hadn't prepared myself at all from the neck up - so I was still wearing my sleeping hat (pink cotton thing with pom pom LOL), no makeup (which I need more than ever) and no earrings!!! I've dreaded doing this for past 8 months, this is the first time it's actually happened... I was mortified! Luckily for me I was wearing a top with a hood, so wore hood for first time ever and looked like a Westie! Phew! (It's a pride thing ;o)
Tuesday 16th May: So after my radiation this morning I saw the Vitamin C doc - we had a LONG talk, I really probed... He was extolling the virtues of vitamin C injections of course (his office had a window to next room where people were reclined taking their vitamin c injections @ $75 a pop and the cynic in me kept thinking "yes but you would say that wouldn't you? This is your business!"). He described how body cells absorb C and turn into water etc and cancer cells turn in to ammonia and kill themselves. Drew graphs, diagrams, gave me a huge printout to take home and read etc etc. I asked about their results what are their stats and he said they've only been doing it for 9 months or so?!?! But big results overseas... Here I am - the guinea pig again! Wish I could get recommendations for this from an impartial physician of some sort! What to do... what to do???!!!
The treatment would be twice a week for three months to start with, so that's about $1800 for that, then once a week or fortnightly or something ongoing after that. I can't remember exactly the ongoing bit. It wouldn't start till after chemo and radiation complete. He pointed out that (in my case with it recurring) this would just be "buying me time" until docs work out what switches cancer cells off. I didn't like that concept so much, but I guess that is the reality. I just try to turn a blind eye to that most of the time!
Monday 15th May: At radiation this morning I had my two newly usual blasts from in front and then behind. They came back in to do the new mega-blast on the lump cluster and said whoops it's not set up yet (they forgot to book it in to the machine or something) so I'd have to leave that until tomorrow. I said no - can we do it later today (was really psyched to blast them today)? They said yes 2.10pm so I had to go back then.
Then I went to Herbal supplements doc, Dr
Leung. After discussing my history he prescribed
(2) Di-indolmethane vegicaps - I bought those then.
Then to order through another distributor, all Usana brand supplements
(1) Essentials (a mega multivitamin)
(3) CAL-MAG plus
(6) Co-Enzyme Q10.
I enquired about the grape seed extract I'd read about and he said ah yes that's in the Bioflavonoid. I asked how much it would all cost and he said the Usana Essentials is about $100 per month...?!?! "The cost of health eh?" I thought... I told him I was also seeing an iridologist this afternoon, and the doc told me not to! He said that his recommendations are the most effective, naturopaths a bunch of hoo har etc etc
Back to hospital for last radiation blast. I got there real early but lost a lot of that gain trying to get a park!? They ran half an hour behind so had to get Donna to collect Lydia from school (Emily was already in Nanna's care for the early afternoon). The blast was heaps longer than my other treatments, which I liked (the burn won't be good though!?)
So then I go to the Iridologists this afternoon. I've been to him twice before, in 2000 and 2002 when trying to conceive the girls. In 2000 he did a full reading and noted some interesting things - the one I remember most being that I have a prolapsed uterus (which I knew was right). That amazed me at the time. I fell pg 7 weeks later ;o) In 2002 he said I was fine and didn't need anything - Emily was freshly conceived at that time - pg test 2 weeks later. So I trust this guy ;o)
So today he digs out my old file and says "so what's the problem today?" I said I was feeling depleted, had had BC last August, chemo therapy now in radiation. That's all I chose to say - wanted to test him! He looked at his notes and said breast cancer eh? Was that in the right breast? I said, why yes. He showed me notes and said, "yes see at your last reading I said you had a knotted milk duct in your right breast". There it was in black and white, and that's where the tumor started, location wise... I was gob-smacked! But wait, there's more!
So then he read my eyes, first my left, and said "I don't want to scare you, this doesn't mean anything yet, but you have a knot in your left breast in a duct between your nipple and armpit" No danger yet, but keep an eye on it. (So then I'm thinking that's funny, supports my lack of trust of remaining breast). He reinforced that cancer doesn't spread from one to the other - it goes a different way, nodes liver etc. Then he moved to my right eye, paused for a long time and said "Chemicals started this tumor - very clearly, it was some quite strong chemicals, can't say what for sure" (!?!). I asked him what else he could see, and he said he could see some inflammation in some of my ex-breast nodes, but nothing too worrying. At this point I was disappointed, and said "well the cancer has returned - can't you see that?" he said "Oh no (sympathy talk, then) I only see your own body's (things, can't remember the term). Cancer is a foreign body so I can't see that, I can only perhaps see when it has affected the body. Hmmm I thought, but then he had seen the nodes inflammed, that is where the big ones are... He then started to write down his prescription for Biostrath and Zambrosa and I decided to tell him about seeing Dr Leung this morning and what he'd prescribed. Brad looked dubious and asked to see the list, which I showed him, and (I'll try to keep this short) big discussions about docs vs. naturopaths, marketing companies like Usana charging over-top prices for supplements not so great etc etc. He ticked the Co-enzyme Q-10 but said get it from other than Usana - shop around for best price. He put ?'s against a few others, x'd essentials etc and I was confused about what to do, told him I trusted what he said but I really wanted to not only re-balance my body but also fight fight against the C. He said he'd look into the Usana products, compare with his own and will give me his recommendations by phone in a few days. I did get the Biostrath now though - yuck it tastes gross, but also tastes absolutely loaded with good stuff ;o) Hold on Zambrosa for now...
Vitamin C. At this morning's meeting Dr Leung recommended IV Vitamin C injections (kind of like chemo in high doses). I mentioned this also to brad and he said yes, you need at least 10 grams per day (which is what Dr Leung said). I'm meeting the doc who does these injection tomorrow to discuss, but don't start this till after radiation. I have quite a few questions for him! I also have some more questions for Brad when we next talk!
Anyway the other important thing Brad said was that he'd noted back last time that I had a strong resilient body (strong health and constitution). So he said that it has weathered the storm very well so far, and holds me in good stead to battle this through. That was a really good thing to hear at this point ;o)
Sunday 14th May: I've had quite a nice Mothers Day - though Emily's diarrhea-ish again and unhappy - must be a virus I guess the way it comes and goes... Went out for brunch this morning with rest of Brent's family to celebrate, nice food, kids were all great so very enjoyable. Pretty tired again, so had a lie down while the girls had their nap :o)
Saturday 13th May: Managed to go clothes shopping today to spend some of my birthday gift vouchers ;o). Trouble with clothes shopping now is, the fashion is clearly plunging V necks and I simply can't wear those anymore, not only with the mastectomy but also the burn patches from the radiation - not a good look! Also, I've given up wearing the prosthesis for now (too sore on burns) which means tops can't be too floppy/clingy either?! So finding flattering (and remotely trendy!) tops is getting harder and harder to find *sigh*. Did manage to find a few things - yay!
And while we're on the image thing for a moment, my hair has grown back a fair bit now. Still too chicken to go out without headcoverings though. My hair has always been dodgy - never in my life have people said "Wow love your hair" never! But since I started wearing this wig I get a comment every few weeks!!! Who's my hairdresser? Wow you've just had your hair done; Those highlights are amazing; Where do your girls get their curly hair from?... etc etc. I'm silently dreading losing the wig now - everyone's going to be highly disappointed LOL! It's starting to really grow now, so maybe a few weeks away from going to the hairdresser and making a plan - first step will definately be dyeing it - lots of new grey hairs now #sigh#!
The other challenge is I am losing a few fingernails now from the Taxotere chemotherapy - two so far... and another 1 looks dodgy. I wouldn't mind so much if the chemotherapy had actually worked!?!
Friday 12th May: The treatment was MUCH better today - thank goodness! They were running late though, so had a big wait, as I'd arrived early as usual (touch wood!). The lesson learned for "next time" is, for that first treatment of any radiation cycle, make absolutely sure you are comfortable, and nothing is feeling strained before they leave the room! The staff were very careful today to make sure I was comfortable, obviously my discomfort yesterday left an impression!
Thursday 11th May: Had my first of the new radiation treatment today. My first treatment area was the shape of a wide upside-down archway, so it was a straight line across the top. This second treatment is a wide short rectangle (with an extra smaller square patch attached at the armpit end of it) that sits on top of the first treatment area, so they spent ages getting it so its very close, but doesn't overlap. So they set that all up, it did the blast, then it changed the shape to an irregular small pentagon and the whole machine moved around (very cool!) to below my back on the side. The staff came in and did some more calibrating before I got the second blast. On Monday I'm going to have a third blast on the lumpy area as well for 5 treatments - then back to the 2 again for the remaining weeks. So the lying there took about 15-20 minutes it seemed, but each blast within that is on for 15-30 seconds. It is a much more uncomfortable set up than I had in the first round. I'm lying on this hard elevated table, my head in a head clamp with my chin lifted up as far as it can go, my right arm in stirrups going up above my head, feet rammed up against a board so I don't move.
To make it worse (what do you call that when you simply HAVE to move a part of your body that's in an uncomfortable position or you'll just SCREAM?!) Well that started up (in my back) halfway through the treatment (after first blast, before the staff returned to set me up for second blast) and I had to continue not moving, experiencing that unbelievable discomfort for another 7 minutes or so. I was on the verge of screaming "AAAARRRRGGGGHHHH!" at the top of my lungs! They could see I was in distress as they were setting up the second blast position and just kept saying "don't move!" while fluffing around, then "oh, I forgot to do that, just hang on a bit longer...". The whole process gets quicker after the first treatment they assure me - I sure hope so!
The new machine is cool though. The last one had this part where they slot in a mould with the shape of the area to be treated cut out of it (like a hole in the middle). With this new one there's all these narrow long bars, set tight together inside the machine, that pull out from each other to form the precise hole shape required (Obviously pre-programmed into the machine specifically for me from the markup). Hard for me to describe, but I think its cool anyway ;o)
Tuesday 9th May: I've just read a book by Ladd R McNamara MD "Breast Cancer - The role of Nutritional Supplements in the Prevention and Treatment of Breast Cancer". I'm only on p 21 and I'm engrossed! I have a list of 4 supplements noted down already. Have contact details of a doc who straddles the fence between medicine and Herbal supplements who I called and booked an appointment. Man I'm so excited with what I've read so far I want to run out and buy Grape Seed extract etc now! However now that I know how many different types of BC's there are, I keep thinking "Yes, but will it work on mine?!" hence the doc's appointment before I try anything. Appointment booked for next Monday :o)
Since this latest recurrence diagnosis I have these flashes of panic every few days where I think "its going to keep growing and keep spreading and I'm going to die" and feel like its already doing so, feel pains in my neck etc etc. Arrrgh! Then BOOM I'm over it! No wonder I need therapy LOL! Thank goodness its only every few days! It's usually TV medical dramas etc that set me off, so have decided its best to just not watch those any more!
Monday 8th May: My skin is getting annoyingly itchy though in radiation site, just keep slathering on the aqueous cream - apparently I can't apply anything else for the itchiness as it thins the skin (dangerous during treatment).
radiologist went pretty well this morning - Dr Benjamin didn't upset me
this time, but he reiterated the seriousness of my situation, then
balanced it with positives. All up though its anyone's guess what's coming
(1) "All these lumps grew back during chemo" despite that we were attacking with every possible chemo - I "did the works" - that's NOT GOOD :o(
(2) My oncologist missed them growing back, even though I was complaining it felt weird there. Could have saved us precious time and $$$ if he'd done his job properly - :o(
(3) If we'd found them before radiation started we would still have done radiation next as we are doing - :o)
(4) Dr Benjamin is expecting/hoping that the lumps will shrink to nothing and avoid more surgery at all - :o)
(5) I'm having another markup next week to blast the lumps within currently treated area more - that will take place during this next round of radiation that starts on Thursday - 6 weeks worth :o) + :o/ !!!
(6) I'm tolerating the radiation treatments well - :o)
Funnily enough, just a few hours after this meeting, during which I'd kept complaining that I wasn't satisfied that this radiation treatment has adequately covered the lumpy area, the hospital rang to say I have to go in tomorrow for another markup, to blast the lumpy area again! It was a rushed appointment - HAD to be tomorrow to get it setup in time. I wonder if this markup would have happened at all if I hadn't pressed Dr Benjamin at that meeting - so I'm pleased with myself - thatís my new approach with this - I'm in charge, I'll make demands when I feel I need to and I KNOW BEST!!!
Friday 5th May: Got in early at radiation today. Ran back home to slather the area with aqueous cream as its getting RED! Bumped into an old chemo buddy there this morning and had a good chat so that was nice :o) My current situation is, current radiation treatment almost complete (last one this coming Tuesday) then I have a day off, then Thursday I start a new lot of radiation for expanded area to cover lumps missed by first treatment (which was planned thinking there were no lumps). So another 6 weeks of radiation... then 2 weeks after that I have another CT scan to see "what's what". What we'll hope to see is no new tumors, existing ones shrunk a bit. Then operation. Then maybe chemo? Depends on the biopsy results STILL not in.
Thursday 4th May: Had my first counseling session at the Cancer Society after today's radiation treatment. She asked me how I was and I said with a big grin, "Much better thanks, I think I'm pretty sorted now!" then less than two minutes later I was balling my eyes out - what is that with counselors LOL!?! She told me it was still early days, and I didn't have to tell the girls anything yet (But I had already talked to Lydia!). I discussed how I find the current situation for me bizarre, wanting to spend so much time with my girls, but at times being either too sick/tired or away at appointments etc. Finding it frustrating with the daily radiation appointments - lose all my mornings just driving, finding parks and waiting in waiting rooms etc. The house has gone to the pack! Arrgh! We also talked about Dr Benjamin and she insisted I be more demanding of him, ask many questions, demand to have my needs met etc. At the end, after many issues discussed, she suggested I need at least another 3 sessions! I'm happy with that :o)
Wednesday 3rd May: Another early treatment day - Emily has been great this morning, asked to go with Daddy to take Lydia to school which made me feel so much better knowing she was happy. I find it upsetting seeing the toys and bright pictures in my treatment room for the poor kiddies going through radiation. I asked the operators about it once, how the kids cope, and they said "They do really well, they just soldier on because they don't know any different". I've come to terms with the second treatment not starting till after the first, found out today that's next Thursday - yep almost at the end of this original treatment, finishes Tuesday. 25 new blasts in the new treatment starting next week, so that means an additional 5 weeks to go of radiation.
Tuesday 2nd May: Having a not-so-good day here. Firstly Emily lost it big time when I handed her over to Brent so I could get to my early radiation appointment - and my bookings are like that all this week! Tried to book later but no go, so frustrating, they just don't get how hard it is with wee kids - they need to be settled and happy, well, at least our Emily does. Then, when trying to sort out better appointments for next week, realised the new treatment isn't starting till AFTER this current treatment is completed (mid next week). I just started crying then - so frustrated with Dr Benjamin, he's not discussing these important things with me and I have no choice to go along with his slack plans which I can tell he thinks won't work anyway. Grrrr.... I'm glad now I have the counseling session on Thursday! The girls are getting more sensitive with all that's going on here, I've told Lydia what's happened but not Emily (she's a bit too young). They've worked it out on their own as visitors come, the girls hear all that's said and see me getting upset.
Returned my Breast Centre nurse's call - she didn't have much to say, other than to say she wanted to check I was booked in for counseling! She said my specialist would call me with the biopsy results (eeek) not sure when though. She said so far all results are stable and specialist is happy, I just have to put up with the delays and "hope things are working" :o/ !!!
Monday 1st May: Radiation markup
went well today - had asked Brent to come with me (after Br Benjamin got me so
upset last time!) but didn't really need him there as it turned out, I was
fine and they shooed him out of the room before Dr Benjamin arrived so I
had to deal with him on my own anyway! One more highly unexciting tattoo
graces my body LOL, hopefully the changed regime will come in tomorrow,
but being public system I'm not holding my breath!
Friday 28th April: Had a good treatment today... Except radiation appointment were way behind schedule and while waiting I was accosted by a fellow patient who went on and on about how "no doc could give her chemo, radiations are crap too" LOL Couldn't help but wonder why she was there!?! You get all sorts in these places it would seem ;o)
My arm was bothering me today. Can't decide whether its the lumps in armpit pressing on something or whether it is ongoing stuff from the original operation (which is what I thought the lumps in me were until could feel a lump for sure #sigh#). Oncologist's nurse called me today to say sorry to hear etc. She was all concerned and friendly etc till I mentioned my frustration that no one (i.e. Oncologist or Dr Benjamin) listened to my concern about what I felt there earlier, and how different things would be if they had. She ended the conversation pretty quickly after that! Wonder if I can sue them?! Nah, can't be bothered. Was thinking today though that if they'd ultrasounded back when I first complained we'd have cancelled at least the last chemo treatment saving us $6200 at least, plus then lumps would be out by now... whole different story really. Grrr :o/ !!!
Man, my arm is really bugging me now :o( !!! Hope it doesn't mean the lumps in my armpit are growing :o/ !!! My specialist said my mind would play tricks like this, sure hope it is just my mind! Radiation guy today said my adjusted treatment may start as early as Tuesday (but ASAP after Monday anyway) and I can't wait for that! Hate knowing the armpit lumps aren't being zapped. Trying to zap them with my mind till then LOL!
Thursday 27th April: My radiation markup has been booked for Monday! Woohoo! Seems my rattling the cages worked LOL So that means in a few days they'll be treating ALL the lumps with radiation at higher dose etc. I'll feel much better (mentally!) then. Booking the radiation times is a real pain, they just don't seem to get that I have a preschooler whose creche finishes by midday. #sigh# Thank goodness I have my MIL here still - she's saving the day for me tomorrow and Monday!
Wednesday 26th April: Most of final results in, and all my
specialists got together and discussed my case. Outcome was: Bone
scan exactly same as 8 months ago (i.e. clear). MRI shows only what we
already know - including those two more
deep in my armpit - nothing elsewhere
(yet). Bloods OK too. The all important biopsy detail not yet in
but they are expecting it to be the same
strain, not mutation. Apparently my oncologist was upset to hear
about my recurrance and was
surprised given I tolerated max doses of chemo (lets face it that comment
doesn't bode well!). He's going to visit me while I'm having one of my
radiation treatments in next few weeks. I reiterated my concern about my
radiologists attitude and my worry about the radiation site not being
adjusted sooner. She said she'd call Dr Benjamin (who didn't turn up for
meeting tonight!) in morning and discuss it with him.
Fingers crossed for that!
Tuesday 25th April: My
parents flew out today for a five month holiday. Mum said "We'll come back
early if it all turns to custard" (?!?!) Feels like I'm submerged in
custard right now!?! *sigh*
Saturday 22nd April Attended the girl's nanny's wedding and found it a bit hard (as both Bride and Grooms fathers were deceased from cancer - couldn't help thinking the obvious) - I've decided weddings and funerals are a no no for me in next 6 months! I decided then and there that I'll start preparing some videos from me to my daughters, just in case (so hopefully won't be needed ;o) Talking through my childhood and the things that happened, what I learned, what I want for them, my first period, boyfriends etc etc, doing about 3 tapes, one for when they're young, one for near puberty and teenage years, and one for when they get married, want to start families etc, discuss my medical history, my mums etc. I quite like the whole idea - and hey, hopefully I'll still be around to watch them all ;o) Why not?!
Just a few days before this latest disaster I'd told Lydia the chemo treatment was almost over and everything was good and would soon return to normal. She gave me this huge hugs and said "That's so great Mama, you've been so brave". Such a sweetie :o) ]. Anyway, felt I had to update her as the situation had changed. She took it very well and said she'd draw a picture for me to make me feel better :o) Last night she asked me what the "zapping machine looks like - does it look like a camera?" LOL
Friday 21st April CT scan confirmed as "just a local recurrence"! As she said, "local recurrence is a whole different thing to spread". My lungs, liver etc all clear, they can only see what we've found already, plus two more nodes up deeper in my armpit. Will blast all the above with the radiation, cut out, and continue to watch like hawks ;o) Wait on biopsy results to see what further preventative treatment can be done.
Thursday 20th April: My breast surgeon Dr Shas Chacala confirmed to us today that yep, its the cancer again, at least 6 lumps, and looks like the same strain as last time, though they're had to do some further analysis on the biopsy samples to ascertain whether it has mutated slightly, in which case other pills etc can be taken to fight it. They also ultrasounded my healthy boob and that was still all clear - woohoo! So, so far it looks like just a local recurrence, while that's not what we wanted, its not the end of the world! The thing is, its weird that its resurfaced DURING treatment, that's unusual :o/
Wednesday 19 April: Didn't sleep too well (will take a sleeping pill tonight I think!). Like last time, I know what it is before they tell me, so dealing with that already. I lost it at my radiation session this morning :o/ !! We're now meeting Thursday afternoon to get the low-down. Not looking forward to that really, but I do know that this stage is the worst - imagining all sorts. Here I am thinking, thinking... and feeling twinges in my neck and other armpit (mind plays bad games at times like this). My current plan is to request another op to cut them all out again (use tummy for "parts" if need be), whether than be after radiation I don't know. As chemo clearly didn't work I don't imagine I'll be in for that again (unless there's something stronger they haven't told me about). Glad now I have health insurance, even if they wouldn't pay for the chemo...
Tuesday 18 April: Looks like the Monster is back, and brought its kiddies too. I've barely started my radiation (after 6 intensive months of chemotherapy) and several new lumps found this morning. After spending all morning in the hospital waiting for them to organise an ultrasound etc I told them "forget it - I'll go private and get it done!" - it was my birthday after all!?! Managed to get an ultrasound appointment a couple of hours later and was horrified to see numerous new cancerous looking lumps, the mass I'd been feeling for a while was about 5 lumps close together. Biopsies were taken and results expected tomorrow afternoon. As we left the room the nurse said "I'm so sorry dear" - we all knew it was cancer - awaiting the results is merely a formality really.
What a thing to find out on my birthday.... All you women GET A MAMMOGRAM! Breast exams are a waste of time!!! Wish me luck...
My Timeline to date:
First lump discovered 8 August 2005 (Brent's Birthday)
First recurrence - visually confirmed 18 April 2006 (My birthday!)
Cancer gone Metastatic (spread to liver) - verbally confirmed 12th August 2006 (4 days after Brent's Birthday!)
What is it with birthdays?!!!
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