My battle with Breast Cancer
Sonia's update page - for friends and family
Latest diary entry at top, runs backwards historically down the page.
Friday 13th October: It so was! Threw up again big time this morning. Vitamin C treatment didn't go that well as I was dehydrated from the vomiting and my hand all puffed up like a balloon (a condition called "Tissuing") originating where the infusion goes in and gradually spreading over the whole hand. Still a balloon now at 9pm! Vomited again on way home (managed to find a dignified bushy area on the roadside - classy!?! Doc came to our home and gave me an injection to stop the vomiting. I dozed for hours (Mum looked after girls), still feeling crappy. Crappiness disappeared about 5.30pm and was replaced with acute lower back pain. Maybe the obscene pain I'm having tonight is the Vitamin C working on that area (that's how it works apparently). Here's hoping! Up to my 5th consecutive Morphine (spaced 1/2 to 1 hour apart).
Among all this yuk I did get some good news (of sorts) Radiation called me (weird!) and said my markup for my lower back is on Monday morning at 11.30am!!!! Weeks earlier than expected! Just one zap planned at the mo TBC on Monday. It's great I'm getting the radiation there next week, but a bummer knowing that in the future the monster will continue to grow in the spine and I'll be in pain like this again in the future with no options other than morphine to dull the pain. After this treatment is over I'll certainly be counting my blessings for any and every pain free/reduced day that I have! Wishing it soon! The radiation should definitely work on the cancer in the areas being treated, but for some reason they can't radiate the whole spine, and the monster is through pretty much all my spine. They're just treating the hotspots where it is mainly clustered.
The bad news for me today is that my liver readings have gone up again (I'm assuming because chemo and Vitamin C treatments stopped while we radiate) so its good radiation again next week really (even though I'll be in immense pain for a while), then I can resume the battle ;o)
Thursday 12th October: Yucky and sore I'm afraid but hopefully will improve each day now that radiation finished. Radiology nurse called and said my next radiation (lower back) is in the pipeline, expect to wait about 2 weeks. I'll be counting!
Wednesday 11th October: My supplements specialist called today and is really trying to push me to take DHEA hormonal supplements. My oncologist has said NO but her hormone test of my hormones showed me to be very low of DHEA. I'm in quite a quandary?!
Last radiation treatment this morning - my friend Tracey kindly drove me there and back - still can't drive! I'm sorry to report that I'm in worse pain than ever so glad that was my last zap for a while! We're adding Voltaren to my medication mix. My doc is visiting me here tomorrow midday to see me and assess my total meds concoction which will be good. Dr Benji called and said I can restart my Vitamin C infusions again this Friday, and that he's chasing up the next radiation treatment (on my lower back) as he sent in the pink form for it 6 weeks ago (I'd left a message telling him they told me at the hospital they haven't received it). I suspect this is a strike issue as I know paperwork was part of the strike activity. Hmpfff!
By 4.30pm-ish I was relatively pain free - I think the voltaren did the trick (mixed in with everything else!) I was camped on the couch for about 6 hours, slept for a couple at least then watched "Wimbledon" on DVD but fell asleep again for the second half. I'm just soooo tired from the radiation. Donna collected the girls today and took them to "Stand-in Nanna"s place. Brent worked from home this afternoon to help me, bringing me things, collected my meds from chemist etc. Hospice councillor called Brent on the phone and he's agreed to a meeting with him. That's a major breakthrough!!!!!!! Yay! 7pm - vomited several times - oh the joys of radiation :o/
Yay for everyone who helped me today (and every day!) - it was a miserable one!
Tuesday 10th October: Did a major vomit again last night, was not well! Did manage to finally finish 4 scrapbooking pages after - yay ;o) Rested all afternoon, Mum was a trouper helping out and is doing same today. Looking forward to seeing Heather (someone on my Trademe Message Board Thread I started talking to about a year ago, talk to almost daily but have never met) this evening - yay!!!!! I had a wonderful evening with Heather - my the time flew - she looks so stunning wow - doing chemo in style - good on her ;o) Her hair looked flash - when I finally told Lydia she was wearing a wig she said "Wow! I'd never have guessed!" and agreed it looked just like my wig, but a different colour (which it was :o)
Monday 9th October: I was on the couch all yesterday evening feeling rotten, presumably from the new morphine pills I was given (very different looking to my existing ones), not in pain at all (yay) just yuk yuk yuk. Good sleep then, woke in pain as usual but not the worst, took another short release morphine and hit the shower. Much better then.
I'm halfway through my radiation treatments now, having them every weekday morning hence pain and exhaustion in afternoons. 2 more to go, last treatment Wednesday, then later another round on my lower back, and maybe my neck. I was very sore early afternoon, waiting for Morphine to kick in - which it did, slowly (the top-up stuff for breakthrough pain) then had another lie down.
Sunday 8th October: Finally received a copy of the 20/20 article on that Mother Erin (who had breast cancer) and the video tapes she did for her Daughter Peyton before she died - and I was so pleased to see how much it helped her daughter. As you all know I've started working on those myself, but seeing that has given me the confidence to keep going with it and not be so embarrased talking direct to the video camera. Its such a great thing to do :o)
Saturday 7th October: I'm so unwell,
thank goodness they did the 5 smaller radiation doses approach instead of
one big one - I think the one big one could have quite literally killed
me?! I took a second morphine and really spaced out! Did go out to
scrapbooking shop (Brent drove me and patiently wandered around the shop
;o) then went and sorted the frame we want for an awesome portrait that a
TradeMe member did of me and the girls. Then came home and CRASHED on the
couch! I was virtually unconscious for 5 hours, waking up at 5.20pm!!!
I'm in pain still, been putting off taking another short release morphine as I know that'll mean I'll conk out again and miss putting the kids to bed. But the panadols not taking effect, so think I'll have to. I am on long-release morphine already of course, plus anti-spasm stuff. Just started crying at the table at dinner with the pain ... CANCER SUX :o/
To cap it all off, we forgot about the Badjelly The Witch show that we'd bought tickets for - it was on at 5pm this afternoon - we completely missed it! I was out of it until 5.20 anyway, but then so distracted with how miserable I was feeling I didn't remember until 7pm! The girls are gutted!?! Have just sent Ticketek my sob story email (as after-hours, asking for any leftover seats tomorrow to be allocated to us) which Brent thought read well will try calling them tomorrow. Panadol helping a tad so will take a morphine halfway through story time so I can still do that - then crash!
Friday 6th October: I'm only just coping today really - just super-tired and lathargic - the opposite of the usual me! I have 4 girls in my care at the mo - not good timing LOL! They're all being good at the mo (touch wood) though! I have an exaggerated chemo-brain with all this morphine, case in point, just went downstairs to get something out of the big freezer under the house, to find I'd left the door wide open - all night! So everything in that entire freezer is ruined! What a waste man... can't believe it! Never done that before! Morphine brain! All my Cancer Society meals ruined.... argh!
I'm still pretty sore, but OK, nothing like the morning wakeup blast, OMG it sux! Takes 1/2 an hour to get it under control with morphine. The radiation girl said its good that it's feeling worse this last day, means its working (the radiation). Sure hope so! I just want to lie down.........Was still feeling miserable this afternoon - all of a sudden better in the evening for a while - yay for that!
Thursday 5th October: Woke up in immense pain, took extra morphine on waking and had a major cry. Thank god radiation is today. Please may it work! Busy day socially. Great to see Bogeyi and Ryan :o) Then my Mum met me when we arrived home just after midday and has only just left! She did heaps of help around the house and with the kids! Was wonderful. Friend visited this afternoon with her brand new baby boy. They just left. I'm understandably tired now, and girls have just gone next door, so off for an hours kip. Getting breakthrough pain so will take another short-release Morphine to tide me through, as instructed to.
Wednesday 4th October: Woke up with a broomstick spine again this morning :o(. My radiologist called me quite early and gave me a double- whammy. Firstly, the radiation therapists strikes are getting worse, so my second treatment on another section of my spine, supposed to be 2 weeks after this first one (once bone marrow recovered) won't be! Secondly he reckons the fact I'm on Xeloda could drastically affect my bone marrow condition when combined with the radiation I'm about to have. Never been told that before - seems he only just realised I'm on Xeloda??! He said "tomorrows treatment should be OK but you'll take ages to recover, and maybe never be able to have the second treatment on the other badly affected area". Its seemed to be a fait accompli?! Shortly after that, while I was outside sending the girls away with family friend, Radiology called and left a message on my answer-phone (with no contact details of course other than the name Katie) saying did I realise that my radiation dosage has just been changed from 1 to 5 treatments (I'm assuming lower doses, broken up by all the strike days...)? WHAT????? arrrrgh! What a circus!? Tried calling them back asking for a Katie kept getting transferred into a black hole. I'm gutted at the way my oncologist and radiologist don't seem to talk to each other, or to me! I certainly have always openly discussed what's happening with each, but often don't know the questions to ask! I left messages with both today seeking answers and waited... and waited...
Late in the day, got all the answers, in quick succession from Katie, then Dr Benji's assistant, then my Oncologist's colleague. Overall summary, after a closer review of my MRI scans, showing severe invasion in that spine area about to be treated, and the fact that I am taking Xeloda, they've decided a lower longer dosage will be (A) Safer on my body and (B) more effective on the cancer. So OK then... I have to cancel my Vitamin C transfusions during the treatment period (I know that's standard so that's OK) and my next blood test, meeting with Oncologist, and Xeloda treatment will all be delayed one week, to the 16th.
Seems a near disaster JUST averted, probably cos I was asking so many questions... hmmmm. I'm bitter now that I've had no MRI before this recent one, how rediculous if that's the only way to see bone mets?! Brent and I have decided that we will demand a full-body MRI of me (brain and all) in next few weeks. No more nasty surprises thanks.
Tuesday 3rd October: "I feel Good... na na na na na na! You knew that I would now... na na na na na na! I feel good... my back isn't sore now na na na na na, Moist feet! Can eat! I feel good ba ba ba ba!" OK I'm no James Brown LOL but WOW I felt good this morning - what's with that? Glad we reviewed my meds ;o) Vitamin C put an end to that though - another nightmare attempt putting line in foot causing immense pain, which I put with for 40 mins or so before saying - "No! Move it somewhere else!" Second try in my elbow was the charm ;o)
Monday 2nd October: Every morning I wake up and for a split second everything is fine and then "bang!" reality hits. I had this bizarre dream last night actually where I was sent for another MRI scan of my spine and it came back clear! The docs were all stunned and said wow the chemo and vitamin C must have done it! It was so real and so exciting! Then I woke up :o/!!! Woke up as usual with my spine feeling like a wooden broom stick. At least no spasms or major pain. Yay! Off for a nice warm shower then the foot soothing ritual (copious aqueous cream all over feet, then covered in glad wrap for at least 1/2 an hour!) Been doing this about 8 times a day past few days...
My radiation markup was this morning - what a mission man! Appointment was 11am, got there at 10.50, sweet :o) In robe by 11.10, then waited till almost 12.00 until actual markup took place, lasted about 15 mins. I was annoyed because I was hoping to pop up and say hi to my TMMB pals Bogeyi and Ryan in Starship after, could've for those 40 mins, if we'd known! But anyway the markup went OK, Appointment for actual radiation is this Thursday 9.50am. They're doing my upper spine first this time, just the one mega zap, then later they'll do my lower one. I enquired about when the second treatment (on my lower spine) would be and they said "no date yet, its a lower priority"! What?! Thats where all my spasms come from!?! So left a message with Dr Benjamin - hmmmpf!
for the day (Author unknown):
When things go wrong, as they sometimes will, When the road you're trudging seems all up hill,
When funds are low, and debts are high, And you want to smile, but you have to sigh,
When care is pressing you down a bit, Rest if you must, but don't you quit.
Success is failure turned inside out, The silver tint of the clouds of doubt,
And you never can tell how close you are, It may be near when it seems afar.
So stick to the fight when you are hardest hit - It's when things go wrong that you mustn't quit.
Sunday 1st October: Better nights sleep :o) Have definately decided that its most probably stiffness/swelling around the spine that's locking me when I wake up. Nurse called me today to discuss, said to keep observing over next few days as I adjust to new meds regime. Feel as dry as an egyptian tomb yet again - kept focusing on rehydrating as best I can. Nausea on the way out thank goodness, feeling more normal, just very dry. Feet still needing attention. Glad I stopped the chemo, now I can see the lag effect, I would have ended up totally raw underfoot if I'd continued with it, and not been able to restart chemo for months! This way, should be able to restart in ten days. Assuming the chemo is working. I think it might be - lumps feeling less threatening of late - fingers crossed!
Saturday 30 September: Woke up with new usual stiffness and spasm this morning, no more than before which means that anti spasm med the nurse removed wasn't helping me anyway, as she guessed. Gosh they're good the palliative people! I was feeling very iffy still this morning. Went out with Brent to look at a few things this morning (had to get out!) and kind of collapsed with it all when I returned home, Had to sleep it off, felt iffy all day really. Yuck - hope I adjust soon!?
Friday 29th September: Woke up in spasm again at 5.30am, couldn't stay lying in bed, so had to walk awkwardly around until the meds kicked in. Also mega dehydrated. Managed to settle things down and get back to sleep. Vit C was a nightmare today, 4 attempts to get line in. A lady at my vit C infusions is amazing, had a huge brain tumor, was on steroids etc before her surgery and seemed totally fine and a very cool, lady actually. Had her op on Monday, went very well (they think they got it all out!) and I saw her today (she wears a beret to cover the surgery scars, has lovely long hair still) and she just seemed like before (all good) and was now just on normal pain relief stuff. AMAZING what docs can do, simply awesome!
Anyway, back to me, I'm not looking too flash! I'm severely dehydrated from the new morphine mix I'm on. For the first time with this new chemo have the red rash on my hands and feet today that is a common side effect. So swathed feet in aqueous cream then glad wrap to try and clear them up. Drank sooooooo much water and juice, hoping to calm them down...
I called in my palliative nurse to review my meds (as I was feeling so bad) which took almost 1.5 hours! She adjusted my meds down (!?), removing a couple, changing one, taking away one spasm med "to see what happens" (ie to see if its actually working now, by removing it and see if I get worse! Not looking forward to tonight?!) But she was good, ran through everything thoroughly, which ones to keep by the bed just in case etc. I was over-medicated she said, due to coming into this chapter of my treatment with 3 different doctors all giving me different medications (though I did of course tell each what I was already on). After she left I started throwing up continuously - yuck!). It's the new morphine (I was started on short-release, to work out how much I needed then had to change to the long acting stuff (hoping to improve my early morning pain and spasm problems) causing it we decided. Called my oncologist reluctantly at that point as feet weren't improving enough, and sure enough I was told to cancel the rest of my cycle of chemo (3 days to go). I don't like that but he said I had to or I'd end up a cripple! They say its not a major treatment-wise, I got most of it in, then they'll look at bloods next week and work out if adjustment required for the next cycle. I think its just the bad effects of the morphine (which will calm down in a few days, so hope I can start up chemo again next cycle and have no further problems. That's the plan ;o)
I've received some lovely surprises from the angels around me in the past few days (cards, parcels), the latest being an awesome gift basket that just showed up this afternoon "From my TMMB friends". Wow I was so touched, and so makes my day :o) Its been a manic few days thanks to that whole TV3 thing, the phone rings all day, so I haven't been able to thank people as I receive the lovely cards and parcels, I will certainly try!!!!
Thursday 28th September: I JUST GOT MY RADIATION MARKUP APPOINTMENT!!!!!!! - Monday morning ( 2 Oct) at 11am!!!!!!!!! Then treatment assured before the strike on Friday, (date and time to be confirmed on Monday). Woohoo!
To recap this confusing turn of events, last week, we were told by Dr Benji that he would try and get me marked up Monday 18th, treatment 20th in between strike days. I got no call Monday. I called him Tuesday he raved on about the strikes and said no chance for this week, and next week looked very unlikely. That Tuesday was the day the letter was mailed out to me, unbeknowst to either of us it would seem! Wednesday TV3 called me asking to interview me about the strikes. I called Benji before the interview, to check my facts were right. Still no date he told me?! Today in mail, appointment letter arrives. Most bizarre! Oh well, important thing is, it is on its way, a week later than hoped but....
Got two videos done this morning for the girls, the first of many I hope! (Thank you to my friend Lissa for helping with the filming :o). I decided to start in easy by walking through my childhood photo albums talking about my childhood, relating what I did early on to their own childhoods so far (we were all early walkers etc) that kind of thing. Second recording was of my year in Germany when 14 - a very interesting and eventful year for me. Just "getting to know Mum" stuff. So keeping the emotional video messages for a bit further down the track as I gain confidence with it. Feels good to have it started, and having been on TV the previous day helped get the ball rolling!!! ;o)
Wednesday 27th September: The day started with a real surprise - a call from TV3 saying they wanted to interview me today, for tonight's Campbell live Show on TV3! For the record, I didn't approach the media, one of my TM supporters bumped into John Campbell somewhere a few days ago, told him my story, he asked to see my website, story etc. What a day it has been! The crew were here for 2.5 hours. The interview of me on the couch was all done in one take, the one of me with my meds in 2 takes! Rest of time was interviewing Brent a bit, backshots at Simon the interviewer, and lots of footage of us playing with the girl so yes, I was on TV tonight, and not by any means for a short while (over 6 minutes!)! One of my TM supporters uploaded that interview to Youtube - follow this link to see it - let me know if you can't get that to work and we'll upload one onto this website ;o)
http://tinyurl.com/ear6m or alternatively you can find it at http://tv3.co.nz/Home/TV3Video/tabid/112/ArticleID/13666/Default.aspx
The comments at the end by my radiologist etc were contradictory to what he told me last week, yesterday, and this morning. So that's interesting! If I DO get my radiation next week yay! Benji did tell me this morning that I'm category B (palliative) I can't remember the first but it was critical or something like that. I've watched the clip a few times now and Campbell/Simon misquoted a few things, like saying my planned treatment was cancelled (not true- never booked!) etc so maybe that got up Benji's nose. Its not what I said! Honest! Anyway, overwhelming response from those who saw it was that I came across well and the officials didn't! Whew!
The pain is pretty much under control now, thank goodness - has been good for last 2-3 days :o) The TV crew commented on how well I look and basically its the medication that I have finally adjusted well to :o)
Lumps feeling bigger today sadly, but first time in days, so I'm living in hope! My MIL has been looking into stem cell therapy for me - we have my stem cells from Emily's birth in storage, I planned to keep them for Emily, but Brent and his mum are saying, if they help save her mums life its worth it, she can save her own when she has kids... I'm torn on that, think we'll use half, anyway that's in Aussie, but the cells are transportable apparently. Maybe I'll get the radiation there too!
Verse for the day:
"WHAT CANCER CANNOT DO! ...
Cancer is so Limited. It cannot cripple love, shatter hope, eat away peace, destroy confidence, kill friendship, shut out memories, and above all, it cannot silence courage".
Tuesday 26th September: My lumps are shrinking I'm sure of it! And I'm almost pain free and feeling more alive again (have adjusted to all the meds, of which there are many!!!! Anyway must go chase the radiologist - still no word on the radiation - every day counts! Grrrr! Just talked to Radiologist - I have no hope of getting in this week, and will be "lucky if I get in next week!" They are screwing with my life! Grrrrrrrrrrrrr! Swear! Rant! Rave! Grrrrrrrrr! :o( Still feeling damn good today even now off the steroids! I got the "dealing with terminal illness" brochures today from my palliative team - that got me upset!!! Am I really there I don't think so! Did a fab scrapbooking page last night - love it! Friend ringing to help me start the video taping, I know this is the best time to start them, while I still think there's hope.
Monday 25th September: Angels around me today :o) Still pretty free of pain - yay! Busy day socially, but fab newly weeded front garden thanks to my pal Karen - 4 hours worth volunteered out of the blue - what a trouper! Didn't think it would take that long! But she did a thorough job! THANK YOU KAREN! And a nice tidy house with washing done thanks to friend Izabelle from my Coffee Group - another angel to say THANK YOU to! Did another scrapbooking page tonight while I feel so good! First one since Fiji - about time!
Sunday 24th September: Woke in major pain this morning, took all the meds in bed, then took a long hot shower, more meds with breakfast, still in pain! Aaaaaargh! Cancer sux..... Got it under control... Brent suggested today that I write a letter to the NZ Herald about the radiologists strike and how its affecting me, so I composed that and my Trademe friends and Brent helped me refine it down to 200 words. Wow imagine if that got published too! NZ Heralds a bit harder to get into though, I believe, we'll see! I'm on a roll LOL! Shortly after that, a friend contacted me to say that John Campbell from TV3 just asked for me to email my story to him ?!? So I did! That'd be interesting to see what angle he wants to use - radiologists strike I am assuming!?
Feeling fine now, I slept while Emily did
today (that was unplanned, as I hadn't taken my pain meds) and I woke up
in the gasping agony again, so called Mum and Dad around while I plied
myself with the drugs. All OK after a while. I think I'll take a steroid
tonight before the INXS concert, that'll knock the nausea and give me a
boost, I'll just call the palliative people now and check that's OK.
Enjoying this concert is top priority ;o) but don't want to stuff things
up by overdosing on any meds. Palliative nurse said yep, that's OK to do.
I lasted fine through the concert, thanks to the steroids, will need
sleeping pills tonight definitely! Took painkillers halfway through, took
all my meds in with me so I wouldn't be caught short, also had to take my
chemo pills there. Got a few side-wards glances as I was taking them all
LOL Must've looked like a druggie! Anyway..... ;o) Concert was awesome -
Friday 22nd September: Got up early this morning because I was too sore lying down. Think I need to sleep in an orbiting spaceship from now on LOL! I was in agony, so took a shower but it got worse I was gasping and crying uncontrollably in the bathroom. So Lydia comes in and says "Mummy is your back really sore?" and I said yes, trying to compose myself in front of her but struggling with the agony. Lydia says "Let me rub that purple stuff on your back, that'll make you feel better" I told her thanks but I don't think it will, I'll take my medicine, Lydia insisted so I got down on my knees and she rubbed the stuff all over my back (mental picture of that :o) and the pain subsided majorly! What an angel! The power of Reiki is in her I think! I'm so impressed and proud of her, and she's very pleased with herself too :o)
I've been vomiting all morning lucky me! Nurse came to our home to give me an injection to stop it! I saw Gerald Lewis (my vit c doc) when having my vit c this morning (vomiting all the way through!) and I asked him about any overseas treatment centres that may be able to help me - what he recommended and he recommended Sanoviv or American Biocosics, both in Mexico. Will check online later. He also said no need to despair, the cancer could have been in the bones for ages, we only know now because of the pain from the fracture (caused in Fiji), doesn't mean its getting worse, vitamin c could be working. Oh I hope so! I do feel as if the lumps are shrinking these last few days. Wishful thinking maybe? But I'm convinced ;o) Need major rests and painkillers today - thankfully the family took care of the girls for me :o).
Meeting with radiologist late this afternoon. He said he'll do one huge radiation blast on my mid back ASAP (but guess what - radiology technicians are striking again next week #@!#@! What do they have against me!?). They will apparently fit me in when possible (at least it appears I'm now top priority case-wise). I'll need strong anti-nausea pills on the radiation day and day after apparently. Then when that is settled and recovered, he'll do the same to my neck vertebrae. He said the exact same thing as my vitamin c guy (Gerald Lewis) - that the monster may well have been in the spine there for quite some time - and the Fiji fall caused the fracture! I like a concensus on that theory! Gives me longer ;o) I asked about the overseas treatments and he said don't bother! He said some of his patients went to the Mexico places, and ALL came back WORSE OFF! He said the vitamin C infusions are the best thing for me to be doing! He reckons the chemos may have made the cancer worse and spread - I have to agree with him on that! Not this chemo though, it works very differently... hopefully! He believes my best bet is to build up my own immunity to fight it off. Good plan I guess given my history!?!
I'm battling nausea (and vomiting) here again this evening dammit, eating water crackers slowly still haven't taken my meds or chemo, till I'm sure the tummy has settled. Seems the morphine does not agree with me! Oncologist has prescribed me a new pain killer to take tonight, to hopefully make waking more bearable. Fingers crossed! Its interesting I'm not in pain and the painkillers are overdue being taken (still gotta take them) reinforces to me that the chemo is at least partly responsible for the muscle spasms. That's my theory anyway! My chest lumps DEFINATELY feel smaller - I'm sure of it! :o) How great would that be?!
Thursday 21st September: Brent told me last night that I am his "sunshine" and we hugged all night. It was lovely :o) He still won't shed a tear in front of me - he is my rock. Woke in major pain and spasm again. Took my meds in bed, frozen in pain, it's under control now. My Cancer Society nurse visited me at 9.30 and prescribed morphine. The hospice visited me at 1pm, and talked through medications, our family support situation, etc etc. They are coming back next week to discuss what we tell the girls and when. Boy am I dreading that conversation!?! Still doesn't quite seem real... will certainly seem so when we have that conversation!
Essentially my oncologist told me that my spine is filling with cancer, fast. He said they can't radiate the whole spine, so would just treat the worst affected parts that are causing the spasms. But he's reviewing the slides for himself this morning and awaiting discussion with radiologist. His call last night was based on written report only. I still think the fracture is from the Fiji accident, I got the impression he thought is is from the cancer.
Heaps of visits, phone calls and emails today - I feel very loved :o) Thank you everyone! My online support with fellow cancer sufferers at TradeMe still goes strong (occasionally dipsticks vote the thread off, but a new one starts straight away - total posts so far over the four consecutive threads is well over 10,000 messages!) - I have become rather "Famous" on the message board (as I was the one who started it all), and lot of strangers up and down the country have become my online friends, we talk day and night. At times like this, the support overflows and warms the soul :o) Don't know how I'd cope without it!
Did anyone notice that my breast cancer awareness letter was also published in this week's "Woman's Day" magazine!?! I've only every written in twice, and both have been printed!
Wednesday 20th September: D-Day. Got the news we didn't want today. I have bone cancer now too through most of my spine, and a lumbar fracture as well. Excellent!?! Worst bit - he doesn't believe radiation can cure it, only ease the pain. He said the cancer is spreading too quickly through me despite everything they're throwing at it. He's written me off... That sux... Time to record those tapes for my girls and hope for a miracle...
Had the MRI in the morning (that was interesting, had ear plugs in for the noise which was like a jackhammer banging away in concrete right beside me, but all around. I had to lie still with that noise for almost 40 minutes!). After that I was in acute pain all day (masked by pain killers for most but not all of it).
The hospice is coming tomorrow at 1pm (3 people!?!) to talk me through my situation and what they can do for me, palliative-wise. That'll be good.
Tuesday 19th September: My vit C blood levels were only 270 so they've upped the dose again today (to 160ml/80g) and will test again in a week. So there's more hope for vit c too (ie its supposed to be at 300 to kill cancer, its dropped below that in last few weeks). That means there is still hope :o)
Back specialist went really well too :o) He says my spine is fine, can't feel anything nasty there, its all just injury pain. Spasms should settle with muscle relaxant. He said with the lumps in my front of course I'm holding myself awkwardly, causing the spine to lock, spasms to start. He's interested to see MRI results too, but doesn't think anything will show up. That would be good eh?!
I called the oncology nurse, asking for chest MRI as well while doing spine (to be safe) and she's calling back. I told her what my back specialist said and she didn't really take it on board, and just said "NO MANIPULATION!" I said "too late"! But he knows my back and situation, he's a very clued up guy (best in Auckland), and he was really careful and investigative today (as he has been each time recently) - I wouldn't let anyone else touch it!? Anyway seems the two camps will disagree for now, MRI will tell the story (fingers and toes crossed). Gawd, I hope its OK?! The spasms are setting in today, didn't really have them last week (that was the off chemo week) I'm sure its the chemo doing it - too strong a correlation... Oh well, will find out soon enough! Till then, I'll just keep taking the meds - new muscle relaxant pill worked a treat this morning ;o)
Monday 18th September: Oncology meeting
- Mixed results...
1. Lumpy area definitely lumpier, not my imagination! That's a bummer...
2. Liver blood results improved on last time, blood marker no change (slight elevation) Woohoo!
3. He's not at all happy about my back, spasms etc (I spasmed while he examined me) He thinks cancer is involved there somehow. Radiation could work well on my spine (even though it didn't on my front).
I'm off for an urgent MRI (different to the CT's I've had previously) ASAP then to see Dr Benjamin (my radiologist). We pressed the brachytherapy question again and he said discuss with Benji. We will!
He wanted to try this Zeloda chemo again for another 2 weeks, as its a slow worker, but if no improvement after this round, we'll be doing a rethink. I'm in pain (my back, lower mainly, but all over when I lie on it) he said it felt inflamed. He's concerned about it and wants a "more definitive answer". Will be interesting to see what back specialist thinks tomorrow - I've decided to still go and see him, fill him in and take it from there.
I think the fact that the liver results are better is a great thing - after all - that's what is important. I can keep going with my growing lumpy booby LOL as long as my liver holds up eh?! I was worried with the way these lumps are growing that everything would be #@!*&@ but it isn't so that's good! Still hoping the backs just a back injury issue.... fingers crossed majorly for the MRI...
I have the odd emotional explosion these days then I'm fine again. Two things set me off (1) The back pain - can make you go mad, and (2) The concrete cancerous slab in my chest! Bothers the heck out of me I just want them to cut it out/zap it/do something! Arrrrrgh damn cancer, sod off, you hear?! You are no longer welcome in my temple! Vent over LOL ;o) But I'm using the mental mindset that I could be (COULD be) much worse in the future, so making the most of each day, seeing the beauty and positivity in it and brushing off the rest ;o) Only way to stay sane right now :o)
Got this awesome email today from my other
online support thread, giving me timely renewed hope:
Hi Sonia. On top of the great suggestions from Linda, I think it's helpful to speak to those (and there are quite a few on this list and elsewhere) who have had to go through lots of different treatments before finding something that finally caused a response in their cancer. Even if AC/taxotere and radiation didn't produce a response in yours, and even if your cancer is aggressive, it doesn't mean you won't hit on something that helps you. Like you, I was dx at age 38 with an aggressive cancer that responded to nothing, including epirubicin, cytoxin, herceptin, navelbine, taxol, radiation, too many surgeries to count, plus a whole range of alternative treatments. I have lung and lymph and mastectomy scar mets. I just began an experimental treatment (lapatinib/capecitabine) and for the first time in three years I see a response. My skin mets have disappeared and my coughing has lessened. I never thought I'd respond to anything after so many failures but there you have it. Hang in there, don't give up, just keep moving through the treatments and remember all the long-term survivors who had been in desperate straits but who are still with us, Theresa in Hawaii"
Friday 15th September: Well I was a super happy camper this morning, I have realised for a while that the surplus chemo weight/fluid retention is finally falling off, well decided to weigh myself today and I've lost over 8kgs! (And about 4 inches at least around waist). Lookin' damn good ;o) AT LAST! Hooray! Getting close to my natural original weight - only about 6kgs to go ;o)
Oncology nurse called and explained that she is only referring me to palliative nurse for symptom management, as they are better with that than they (oncology are) and that they have by no means written me off yet. I said "You'd better not have!" LOL. Vitamin C went well, had blood test there so will be interesting to see what the levels are now, Apparently now I'm the 2nd highest dose received ever there now - maybe I'll crack their record ;o) My vitamin C doc said today to ignore his wife's hormone adjusting advice, that she mustn't have realised my full situation, and he concurs with my oncologist that I shouldn't be playing around with my hormones now. So that answers that outstanding question ;o)
Day ended not happily lumps feel atrocious this evening. Whole area just feels tight, aggressive, and hard as a rock. Today at vitamin C they said when the vitamin C first starts working, it "calcifies" around the tumor first, making it seem to grow scarily, then it does its stuff. So I guess we've got to hope that's what's happening!? Tests next week will tell the story, hopefully a good one, could do with some good news about now ;o) Will just have to try and not go insane with worry before then!
Thursday 14th September: Talked to my oncology nurse and she unsettled me a bit after saying she could allocate me a home care nurse (to help check the medications I'm taking, new scripts etc, check I'm coping etc) and I said yeah that would be great, and she said "well you think about it, I won't book it in yet, you can either get a palliative care nurse or a... " (I forget the second one - the name of the first one kinda freaked me - so am I officially in the palliative care box already?! :o/ Don't think so!)
Tuesday 12th September: This morning when I woke my lumps felt GREAT, then later not good, now OK again!?! Messes with my mind so trying to ignore but its hard to with the constant aching in that area. I try to remember how it felt and looked in Fiji as a comparison, and I'm just not sure. They've been there too long... so I can't tell if chemo/vit c working or not?! Anyway my back feels GREAT - no painkillers now, off steroids :o) I was listening to U2 in the car on way back from vitamin c dose I just sang away at the top of my lungs in the car and felt so great to be alive (was a beaut sunny day today) and the lumpy area actually stopped aching - music is a great tonic! I started yelling out to my chest in the car "die cancer die ha ha!" at the top of my voice - Am I insane ?! LOL It felt good :o) I feel I'm being constructive, continuing with the vitamin C the whole time ;o) Off steroids now, tad tired, but then I'm still catching up with everything, really fell behind with the whole back nightmare...
Monday 11th September: A day of wacky extremes (fitting sadly that it was 9/11 today, our thoughts are with the families of all that were lost without warning that awful day 5 years ago... At least no matter what happens with me (I'm still optimistic!) we've had some warning - and certainly been given the full opportunity to appreciate the preciousness of life and our family :o)
Anyway (shake that off LOL), the day started off really well, catching up with OLD friends today, brunch this morning with Caroline, a friend I haven't managed to see for ages, though we do email :o) Had a great catch-up :o) Then Angel Nic96 arrived at 12.30 to do some more ironing for me (! :o) and not long after that my old best friend from high school Megan (we last saw each other when we are aged about 22, lost contact when she married and I didn't know her married name!) reconnected by email through old friends about 2 years ago and she called me today on the phone at about 12.45 and we had a HUGE chat. So a great first half of the day - not what planned :o) Then...
Early afternoon I saw some school-kids (3 boys aged about 14) come up through our boardwalk right up to the back of our house (and then run away back down it very suspiciously) while I was on the phone in our study (fixed phone so could only watch). An hour later when looking for all my keys to leave the house with Emily, I couldn't find them anywhere (searched for a good hour) and as I have occasionally left them in the back door by accident rather than bringing them in (certainly won't ever from now on!!!) I suddenly realised that the boys must have taken them! They were all my keys (car, house the lot!). After 2 hours searching the house, property, calling the cops, arranging an after-hours locksmith to change the locks etc etc, my MIL discovered (While my F-I-L and I were scouring the bush in case the boys had thrown them away as they ran, which police told me they could have done) that Emily had actually hidden them in her play kitchen :o/!!!! (She's never taken my keys before, but I believe I may have left them accidentally on her play table today). Major stress I didn't need aaaargh! Luckily they were found at about 6pm locksmith not due till 7pm so we managed to call and cancel everything without cost - could've been a huge expense if not found then! :o/!!! So much for inner Karma and relaxation (which was the plan for today!) not!
Sunday 10th September: Mum and Dad arrived back in the country yesterday morning - yay! They visited us late this morning. Hopefully mum can help me out a little bit now she's back, as our nanny will be having her baby any week now, so that support will disappear for a while. However, if this back holds, I'll flag the physiotherapy for a good few weeks, freeing up another two mornings, which will make things easier. The storm clouds are parting and I can see the sun peeping through - its amazing how much easier life is when my back isn't causing me grief! Its a little niggly, but after what I've been through I can handle that! Brent's better today, now he's let a little smoke out of his cave ;o)
I read in the paper today that we won for Lydia the new Barbie DVD that comes out this Thursday :o) Yay - angel dust still swirling :o)
3.30pmish I panicked - my lumps felt like (and looked like) they are growing again! That familiar feeling again (a tight tugging), so looked in the mirror and - yep, bigger than before it certainly seemed. Freaked out a bit! Another treatment maybe not working... Anyone still stalling on getting a mammogam!?! You're insane! Save your life and get one!!! I calmed down after an hour or so, I so hate that feeling while it lasts :o/ Yesterday it felt like they were shrinking, so maybe they're going necrotic - dreams are free :o)
Saturday 9th September: I fell asleep on the couch last night and Brent left me there so I slept there all night?! Woke up stiff but NO PAIN! Maybe I should sleep there every night for a while LOL ;o) Sadly I'm all nauseous again now, (yes I did have breakfast today) so I think I understand why this chemo is two weeks on then one off - its seems I'm feeling progressively worse as the two weeks roll on! Only a few days to go thank goodness. So I took the antinausea pills that my oncologist prescribed me before we went to Fiji, without really concentrating on what they were, being that it was one of the ones I took through all my last chemos. Sooo, my MB friends reminded me later that these ones (Dexamethasone) are steroids (antinausea also) - I didn't really want to be on steroids!? I'm actually pretty sweet with the Dex - its like a powerlift for me - I float from the rafters! But weaning off it isn't so hot. I took a half with dinner tonight, so will have to take a sleeping pill again tonight! Silly me didn't think about what I took this morning, he said "for nausea" so down it went. I really must concentrate more!?! Think I'll take 1/2s for next two days (till end of chemo) then a 1/4 on Tues and nothing and see what happens. Funny how you become your own doc after a while!
There was just a knock on the door later in the morning and I was given the most awesomely gorgeous huge bouquet of flowers "From all my TMMB friends" Yay for my online support group - how totally unexpected and special - thanks to them there is angel dust swirling all around :o) I feel the urge to pay it forward :o)
This afternoon Brent just lost the plot and walked out without saying a word!? He was gone for hours and wouldn't answer his phone. Its pretty out of character, he's done this just once before, back in my Taxotere nightmare days (when I was in my worst state physically, like I was yesterday), so I'm not complaining (I'm glad he comes back ;o) but I am concerned for him. He's clearly struggling to cope with all this - I have my amazing online support group and he has nobody (to any of his mates reading this - I think he could do with a weekend day out with his mates ;o) Pretty please?!) This whole cancer business has been a real nightmare, he's been wonderful to me, giving full support, seldom complaining, always maintaining a brave front. He's one in a million :o)
Luckily I'd taken the steroid this morning so I ended up coping fine in his absence. Actually - a cool thing happened while we (the girls) were out (better than waiting around at home), we went to try and find another puppet bird toy that Lydia got several years ago that she's recently pulled out and plays with ALL the time now and of course Emily wants one too. So went to The Warehouse (where Lydia's one came from), searched everywhere, nothing and I thought "Oh no, they don't sell them any more" then decided to try Toy World downstairs asked the assistant they said "Oh no, we have no marionette puppets at all", then the young assistant said "Oh, wait, we have one bird one" and took us to the depths of the back of the shop and there way at the back of a bottom shelf was one - just like Lydia's but white :o) Last one in the shop! If Brent hadn't disappeared I wouldn't have gone out and found it, maybe just in time, so there you have a true case of yin and yang there or whatever ;o) Emily was thrilled!
Felt pretty damn good this evening, backs a
bit niggly but nothing major.
Friday 8th September: This morning started off real nasty... I was in sooo much agony (back pain) that I could not stop sobbing, and forgot to have breakfast, then took my chemo pills (and maybe 2 too many painkillers too) on an empty stomach and ran off for my infusion - D'oh!). Well needless to say I was feeling very green around the gills in no time and I was sitting there with a drip in me asking for a bucket because I thought I was about to throw up! I felt and looked awful! That was about the time that a TradeMe member ("nic96") texted me saying she wanted to help me out, today! I was sooooo grateful (I've never met her before!)! By the time we hooked up at midday at my place, I was feeling much better (thanks to vitamin C no doubt), still pretty pain free and no longer particularly nauseous so I felt a bit of a con LOL. She was such an angel and did all my ironing (and told me to save her up another pile for Monday) and we had a nice long chat while she ironed and I had my lunch etc. She's a beautiful and amazing human being! I can't get over it - can you?! Two other traders are also offering to help me out too! It renews my faith in the human race :o)
As for the nauseousness, I had it last night too and its coming back now, so maybe this is a new side effect (or the liver cancers growing, we'll go with the chemo theory for now!).
So GREAT NEWS :o) My oncologist called this afternoon to say he's been through all my CTs and I have NO VISIBLE bone cancer, just lots of "wear and tear" (no kidding LOL!) My spines out again (visibly!) sadly but as long as the pain killers are working I'm OK. It's that waking up in the morning, waiting for the first meds of the day to kick in that's the bummer. I got Brent to help push the wayward vertebrae back in, he tried. I really feel that rest is best for a while, the whole areas been over-manipulated... so no more physio this week... I'd been thinking about asking Brent to rent a spa pool for me to soak my back in (back guy thought that was a great idea, it would be ideal) but after mentioning it on my support thread I was warned that I could get lymphodema from it (it happens apparently). I've left a message with my oncologist asking him about that, but he hasn't called back as yet. I already have a little lymphodema (thankfully not much, below my armpit beside the lumpy breastless area), so am very aware I can get it, and definitely don't want a Heffalump arm! LOL.
I asked my oncologist about the recommendation by the other doc that I take progesterone and DHEA hormones and he said NO!!!!!! Don't do that! Don't mess with my hormones now, it could cause other things to flare up, counteract the chemo and vitamin c etc. So major difference of opinion?!?! (I'll go with his, reluctantly).
No matter ;o) I go to bed tonight warm with the feeling that there are angels out there amongst us, willing to be so selfless and generous. Thanks Nicky for all that you did :o)
Thursday 7th September: Well just got the results of my hormone tests and I have low progesterone, and my DHEA level equates to that of a 75 year old! So 2 new supplements to be added to my regimen! No wonder I feel sapped!
really tests my inner strength. Its not fair to be dealing with this as
well?! I'm in major pain today sadly but my spine was all fixed up again
this afternoon by my back specialist and he said it is feeling much better
(moving normally, no longer rigid, so is pretty sure there's no cancer
issue there) and should settle down now, but after all the manipulation,
the bones are sore, and surrounding tissue bruised and swollen (hence
pain) - A good few tears have been shed today... My lumpy area has been
very stingy and sore too, and the surface skin is peeling away where my
sports bra cuts across the biggest lumpy area, so I think that's the
radiation effects combined with this new chemo. No more bra for a while
:o/!!! My earring hole started bleeding for no reason yesterday too. So
the chemo is clearly affecting my body now, hopefully working on the
cancer too! Still no reply from the Health Board in response to my request
for more hours home help. Will call my Cancer Society nurse tomorrow, see
if she can get through to them - or maybe 2 hours is the max they allow?
Need more anyway, balls are falling down everywhere!
Tuesday 5th September: I made the bad decision not to take a sleeping pill last night. At least I woke this morning pain free (first time in ages :o) I was so excited when I woke up so comfortable but the bra-line area's muscles started pulling again so got wheat bags on as I headed off for my Vitamin C infusion which went well. But pain set in as day went on :o/
Monday 4th September: Think I'll have to take the painkillers regularly now - they work wonders on the sore muscles (including the breathing thing) - Amen to them :o) Have to worry about addiction later, but then I don't have an easily addicted nature I believe. Went to my back specialist this afternoon and he put a cortisone injection in my lower back (so that area/s pain free now) and manipulated my L7+8 vertebrae (they were locked up again) and thats linked to my ribcage, hence the pain when breathing. I'm going back Thursday avo to check all OK / further fix before the weekend. He wants me to ring oncologist to check my CT - I think he suspects cancer in my bones - hoping not?! :o/!!! The other interesting thing he said was to check my calcium, magnesium and potassium levels - as deficiency of those caused muscle spasms (turns out you get potassium from fruit juice - I drink 95% water, 5 % fruit juice - should be more like 70% 30% apparently all the water I'm consuming is flushing out my potassium, but as they've stopped I suspect my new regimen of supplements is filling the void - will check though. He's given me a script for an anti-spasm muscle relaxant to have on standby in case. Feels like lumps are still growing by the way dammit. Hey, who knows, maybe with my diet changes I've lost some fat around there so they feel bigger but aren't etc. They're not growing like crazy like they were in Fiji, so maybe its starting to work, slowly but surely. Could be a palliative rather than curative treatment. I still feel fine otherwise and just living each day to the max, in between all the appointments ;o) Oncologist is calling me back about the CT - the nurse said "don't have any bone manipulation from now on!" I told her "its a bit late to tell me that!" LOL *rolls the eyes*
Sunday 3rd September: Lovely Fathers Day brunch up at Orewa, there was an amazing playground across the road - the kids had a ball! I'm finding shortness of breath a new problem now and when I inhale, at the end of the breath I get a pain on either side of my chest. Hopefully just side effects (they are both listed ones) but I don't like it much! I think the soreness when I inhale is muscular like the back, so not panicking yet. Symptoms seem to come and go through the day, with the exception of the back! No more spasms today either, thank goodness :o)
Saturday 2nd September: I am well, but backs still very sore (muscly) no spasms today touch wood. Lumps certainly not shrinking as yet. OK so my brothers and sister in law came over this afternoon and evening, we were expecting my brother and s-i-l next weekend LOL we're not sure who got the date wrong LOL. Before that I was helping girls make their fathers day cards, before that we all rested, before that Brent and I went to photographer to confirm sizes to print of the photos taken a year ago almost exactly LOL. The pics were taken after my op, before chemo - still had my long hair ;o) Anyway before that the girls ballet and swimming lessons! A busy and eventful day - busier than originally planned!
Friday 1st September: My vit C went
well AND guess what - my last blood test showed my vit c retention is 301!
(300 is the target we were going for) so now, things had better start
happening !!! First time I ever came close to 300 - last times were 225
and 240 (I just found out today). They say latest research recommends 300,
previously they said 250 but that's been revised. I said, hey I'll try 350
if you like LOL ATTACK those damn lumps - destroy grrrrrrr!!!!
My back was great this morning but started going downhill around lunchtime. Not much relief since, though no major spasms thank god, just major tightening. Had a hot shower that helped, lay on wheat bags for an hour, not so good once I got up (it was lovely while on them though).
Thursday 31st August: BAD night (OK I've had worse, clearly, but it sucked). My back went into an almighty spasm last night rendering me immobile, flat on the floor. If I moved slightly, massive pain. I've seen that acted out on movies/tv shows, now I know what it feels like!?! Brent managed to massage it out a bit so he could pull me into a doggie position, then up to kneeling, then to my feet (with lots of ow ow ow as we went LOL). Still spasming this morning. Lydia was sick overnight, Brent had to manage it, too hard for me to get out out bed! Emily ended up in bed with me, and Brent ended up in Lydia's room. I had to prise myself out of bed to down some brekkie as my chemo pills I have to take 12 hours apart after food. 7.30's my chemo time.
Lydia came out in a peticial (sp) rash on her face and upper torso only around midday, temp and achy but otherwise fine. I rushed her off to the docs to be safe, knowing they were all meningitis signs. Poor mite had to have a blood test (she was amazingly brave considering her terror beforehand!), but it came back fine. Continued to vomit/sleep for the rest of the day. Not fun to manage with a sore back?!
Had physio this afternoon, (just a gentle massage to try and calm the spasms). I continued to spasm away during treatment. Owwweee... They said they were sure it was probably the new chemo causing the spasms (they see a lot of chemo patients) - oh lucky me! They reckon its the body adjusting/reacting to the chemo (apparently it flares up in sensitive areas - in my case, my back). Should calm down after a few days/weeks hopefully. Best thing is heat - have spent the evening trying to ring around and find one of those small heated over-blankets like they use in hospitals (Harvey Norman supposedly sold them but are O/S), no luck. So will have to make do with my wheat bags for tonight. Lydia's still vomiting, but thankfully the bloods came back OK. Poor wee mite :o(
Wednesday 30th August: Still thirsty as, never peed so much in my life, after all the water I'm drinking, but fingers are better - I think I'm right, it'll be the Vitamin C days that will be the worst, for dehydration, only 2 days of of every 7. I can handle that I think (and hope ;o)
Back's still a pain, waking up in agony is my new daily thing it would seem. What to do now? Its definitely muscular pain, I'm sure, which is better than bone I guess (touch wood). Had my first complementary massage at the Cancer Society this morning (well, just $10 for an hour) she worked over me very gently working on draining the mild lymphodema that I now have under my armpit (right side of torso). Picked up my reading glasses (first time glasses wearer - chemo seems to have accelerated my eyes degeneration, but its not too bad, eyes still pretty good thank goodness).
Tuesday 29th August: Started the chemo pills this morning - severely dehydrated already! Fingers cracking. I've soaked my fingers in Eulactol in plastic gloves, and drunk 3L of water, my fingers are improving but tender, I'm still thirsty! I think the combination of vitamin c and the chemo (both have dehydration as side effects) together are a bit much, hopefully just on the vitamin C days... Cracked fingers crossed on that one! If I can't get it under control, we're going to have to reduce the dose, which I'd much rather not do. Its about time I started taking care of #1 first (that doesn't come naturally when you're a mum!) Despite all my appointments etc (my back is still very sore dammit) I have to try and squeeze in some "me time" ;o) I'm working out how that can be achieved...
Monday 28th August: Oncology went pretty well last night. According to bloods my Vitamin C infusions are not adversely affecting my blood count (i.e my count is good) so can continue with those (yay #1), CA153 count showed some elevation, but not a lot, so the cancer does show (which is good from a monitoring perspective) but there's not a great deal happening so that means things aren't too out-of-control as yet (yay #2) and results on my liver were good also, indicating that I "still have plenty of healthy liver there, which is good" according to my Oncologist (yay #3)! Zip-a-dee-doo-dah, zip-a-dee-ay, my oh my what a wonderful day... :o)
I start the chemo tomorrow morning, and hopefully won't have too many side effects (I'm hoping with all my supplements, things will run smoothly).
Sunday 27th August: Been another busy day, gotta slow down... Going to call my support services contact tomorrow and try and get more hours help. 2 hours on Friday doesn't quite cut it when you've got toddlers (washing, tidying etc) ... fingers crossed for that! God I sure hope this new chemo and/or the vitamin C starts affecting these lumps pronto, they seem to be growing by the day. Not too nauseous today, tired though. Been a bit down, but should be fine once back's on the mend.
Sore back! Sore back! Aaargh! Its horrible... there was a questionable area in my spine on the CT (they didn't have the last slides to compare them to - so hoping this pain isn't now bone cancer too - my oncologist is wondering that, now I'm beginning to?! My whole spine hurts when I lie down on it (can't sleep on front or right side cos of the lumps on my chest) so its getting yuckier - fast! Hope, hope hope its just sore spine from all the manipulation... hope! Will see what everyone (back specialist and oncologist) says tomorrow... on Friday I was sure it was just my spine was out, but things just keep getting sorer back there. Its hard to stay strong at the mo (tears streaming)... fingers crossed for big changes for the better tomorrow.
I researched liver cancer a bit today, found out the differences between primary and secondary liver cancer (I have secondary of course) and that primary very difficult to treat, secondary much better, and is treated in same way as original cancer (in my case that's breast cancer that is resistant to the 2 best chemos and radiation). So that concurs with what my oncologist said. The speed of growth of mine is what's the worry - from one blip a few mm big 8 weeks ago to several large lumps two weeks ago... Help!!! Can't help but worry, but still clutching the sword!
Saturday 26th August: Lydia was a star at her ballet this morning, I had my blood test while she was dancing. Emily vomited last night too for some reason (at nannas house while we were at Oncology). She was unhappy all second half of night (= little sleep for us) and Lydia had nightmares too, so came to our bed, but noise from Em kept her awake rest of night. Not what I need right now! Felt nauseous tonight, very little appetite.
Friday 25th August: My vitamin C infusion went in well this morning - Yay! Oncologist finally called and set meeting for 5.30pm today. Yay for that too - want to get moving!
It went pretty well, considering... no
timelines mentioned thank goodness! He wants me to start on a different
kind of chemo which works best (of the remaining chemo types) on this kind
of breast cancer. Is a tablet I take twice daily for two weeks, stop for
one week, then another 2 weeks on, one off, etc, which they'll probably
try for 5-6 months, maybe longer, depending on how my lumps are affected.
I'll have regular blood tests if my blood test tomorrow shows elevated
levels (they haven't so far) and if bloods don't show current active
cancer growth then will need regular CT's instead (some cancers don't show
up in the blood tests, seems I may have one of those).
The facts are, I have a very aggressive fast growing cancer, no question. Now have several largish lumps in my liver (6 weeks ago there was just 1 spot!?). They're most concerned about my liver, not the growing lump patch on my chest. They expect the chemo (IF it works) to work on chest lumps as well as the liver lumps. Works well for some women in my position, not all. I got the impression this treatment is a palliative one, not curative, but Brent reckoned he heard it could be curative. Not something to focus on I guess! I shouldn't lose my hair with this chemo (yay!), may get diarrhea, if I get it bad then they'll have to stop and reduce the dose. Dry cracked hands... not many side effects really. Time to focus even more than I do already on drinking lots of water, moisturising etc.
Everyone at the mo says to me constantly
"but you look so well!" and its true, I'm looking fabulous LOL yet my
insides are in trouble! Its funny how everyone thinks its weird that I
look healthy - I think it just shows how little we really know about the
health of our bodies, by the time the cancers found, if its making you
look sick, you're in real trouble! The nurse pointed out to me this
morning that my liver can't be too bad, as my eyes are still nice and
clear, very white etc, not yellow, so that's good ;o)
The interesting revelation for me this evening was how something he told me months ago now rings true. Back when my recurrence first flared up, I wanted them to REMOVE the lumps and he said, no we'd rather watch them and see what they do, if they flare up, then we know it my be on the move, and to go look for it. (They're like a red flag for the rest of the body). Now, if they HAD removed the lumps, these liver lumps would still be growing away, but we'd have no clue and think all was fine and dandy. You know?! So these horrible big lumps may have kind of saved me so to speak ;o)
Thursday 24th August: Backs on the improve - yay for my physio and back guys (I saw them one after the other this morning) and the pain killers LOL. Spine was locked up near the bottom and up at the neck, and popped out to my left at my shoulder-blades level. No wonder I was in pain! Back muscles all seized up now too... more physio and exercises should sort things.
OK, so current situation is I have big lumps all over my chest wall which I feel as I move (its like having marbles and small golf balls embedded inside my muscles), and my excretions have changed colour, and I've lost my appetite (still eating though - and good stuff ;o) Waiting for oncologists to set the date for the big low-down on what's next for me. Want that meeting over and done with and a new plan in place, hopefully still including my current supplements etc ;o) I was feeling pretty depleted before our holiday, and now I feel so recharged! Yay for Fiji! I just have to sort this darn back and things will improve all the more.
Wednesday 23rd August: Returned from
Fiji late today. We had a fabulous
time - will update webpage with all the stories ASAP.
Note: Remember I had a fantastic time with my lovely family, weather was wonderful, hotel etc devine, as you read the following ;o)
The lumps caused me concern while over
there, growing considerably more, owwy... I thought they may be taking
advantage of the depleted Vit C levels. My boob was literally growing back
LOL only its from all the lumps and the biggest bulge is higher than it
"should be" (to be my boob LOL) and closer to my armpit. Got quite a few
stares when I was in the pool (with the obvious disparity) but I don't
care if it raises awareness (had my pink wristband on the whole time) and
hopefully saves another woman going through what I am now?! I started
expelling blood (presumably) out my other end, so have stopped the vitamin
C enemas - obviously was a bit much for me! Still taking the oral stuff
though. Things calming down now... so no permanent damage ;o)
I also had major back problems while there sadly (thanks to a couple of bad landings on the waterslide, but oh what fun that was!), so survived on painkillers for rest of trip (tried Fijian massage and Doctor - no luck) - the painkillers did work though ;o) Parasailed on the last day! The nights were hard for me, lumps and back felt most sore at that time, thoughts went through head... (watched movies and did heaps of scrapbooking to distract me ;o) I thought about the vitamin C treatments considering what's going on. We still have faith it will help me - it's too soon to abandon it. The lumps only really started growing like crazy after we got here (and I'd stopped the infusions). When I arrived here I was thinking maybe it wasn't working, but after the changes I've seen now - I have faith that it was. My body was soaking up the vit C so much we weren't yet up to the effective dose of 300 (I only achieved 220 - so we'll keep working on that when I return). A woman who sits next to me when I have my transfusions was in the position I am 2 years ago and is now cancer free - and she refused chemo and radiation ;o)
Came home tonight (flight was lovely, girls very well behaved as usual ;o) to find out that my slack oncologist (who was supposed to leave an appointment time for Thurs/Fri on my answering machine) instead his nurse left a mess saying to call to arrange a time next week - grrr! Bags are all unpacked, loads of washing to be done #sigh# I'm back alright! But a GREAT holiday :o) Feel recharged, ready to face the next big challenge! My sword is raised... fight fight fight!
Sunday13th August: Flying out to Fiji for 10 days.
Saturday 12th August: Oncologist just called. News isn't good. Verbal only @ this stage (from CT scan). Cancers back, in liver too, that's all I know at this stage but as I've said, I can feel them all in my breast now, and they're growing fast. He said they'll be trying an oral chemotherapy as soon as I return (quite different to previous chemos). Given radiation didn't work, brachytherapy not likely to be an option. Taking anti-nausea meds over with me. Bugga :o/ !!!
Friday 11th August: CT went OK (no results, face music when I return) though my old scan films never showed so left them still hunting those down. Great last Vitamin C infusion - no pain or discomfort! They've given me vitamin c enemas to take away :o/!!! Eeek!
Wednesday 9th August: Well just got back from Dr Monica Lewis, the supplements guru (coincidentally wife of my Vitamin C doctor). She's way out past Swanson, major drive for me these days LOL. Anyway, appointment was at 12 so I took off at 11.15 and was in spaghetti junction committed to entering NW motorway, when I checked my diary for directions and I had the appointment time in there as 1pm. Doubting my brain, I thought "Oh no, I'll be an hour early" as I was driving down the motorway, thought to call to see if I could come early, but had no phone number down (unusual) so I got off at St Lukes, turned around and came home! Farted around for 20 mins, getting phone number etc. Well, just as passing St Lukes, the receptionist called to say "you missed your appointment, it was at 12!" Arrrrgh! She said you'll have to go home and Dr Lewis will do a short consult over the phone, so I got off at the next exit, headed back to town, while she was getting my home number, then Dr Lewis interjected and said, no come in anyway, so I got off at St Lukes, turned around again and headed in! Arrrgh! *Rolls eyes* Got there in the end!
Anyway, she suggested progesterone deficiency the problem (based on history) - had a thorough discussion as to why - so prescribed Progesterone Oil and DIM (Di-indol-methane). She reviewed my supplements and OK'd about half and dissed the other half (that impressed me actually, as she's into Usana so thought she'd insist I get all Usana!). So I'm keeping on with the Flaxomega, Oxyguard, Co Q Max, Melatonin (but quadruple the amount) and Lipoic Acid. I'm to ditch Super Calcium Complete, Active Women's Multi, Mineral Power, Coral C and CAA. I'm to replace those with the following Usana items: Biomega, Essentials, Selenium, Active Calcium and Magnesium. Before starting the progesterone, tomorrow morning I'm taking a saliva 6- hormone test to check current levels. Will take 3 weeks to get results, then some tweaking could take place. Oh and she didn't sell the Usana items to me, told me to order them direct if I want ;o) So that's the new plan.
Tuesday 8th August: ONE YEAR ANNIVERSARY OF FINDING FIRST LUMP :o/ !!! And Brent's 40th! Talk about taking the positive with the negative LOL
Pretty positive (but appointment-filled)
day actually ;o) 9.30am: Had my vitamin c this morning (went well, two
needles in hand though, as blood test also required to test my current
levels - last time I was tested, I was still a long way away from the dose
required to give full effect so there's still hope ;o) Nurse wasn't phased
about my lumps re-growing, saying "the more aggressive the growth, the
faster the effect" and told me about a patient who had a orange-sized lump
out of her neck, on vitamin C it shrank to less than a golf ball size in
about 4 weeks I think, when radiation booking finally came up. Patient
opted radiation, nurse thought staying with vitamin c would have finished
it off. Anyway, it definitely shrank it ;o) A lady beside me - her brother
had a brain tumor when he was 44 and was given 4-6 months, and he survived
12 years, healing beautifully. Apparently his saving was alternative
medicine. I've always been wary of all that, but these days I ask what he
used (for two people I know whose young husbands have brain tumors) She's
going to tell me next time (oh, Vitamin C infusions not recommended for
brain tumors, can make them explode apparently?!).
I picked up my CT scan gloop from Mercy hospital on the way home to collect Emily.
1pm: Dentist, two fillings (one was a re-do) not too bad actually (except that means 4 needles in 4 hours :o/!!!), rest of tenderness is de-mineralisation, which I can reverse - got the tooth guard to soak them in the tooth re-mineralising paste. 4.45pm: Back specialist checked my back and its looking good, all stayed in position nicely except right at the top (he popped them back in). To continue physiotherapy and exercises.
By the way, decided my new resolution for next 3 weeks is NO MORE FEELING THE LUMPS!!! Nope, what's the point, the CT's coming, feeling them and noticing anything won't change what happens so... ;o) Good thinking eh?!
Monday 7th August: 9.30am: Emotions overload! Left a message with my breast surgeon, then went for my back massage. As soon as she started I erupted into tears - poor girl didn't know what to do! (I was suddenly concerned that the massage may have activated the nodes, which is where the lumps are). Surgeon hasn't called back yet, so have left message for my oncologist and have been assured he'll call soon. I'll be fine, I'm just in that emotional "what's next" stage... but also getting demanding - right, need CT scan this week, and next to meet to discuss my wants before I leave so they can all make the plan while I'm away.
11am: Talked to oncologist and booked my CT scan for Friday morning. Was the earliest they could do. That's probably best anyway, as Vernon has my previous scan slides in being "downloaded into the system" so has to get those back, then meet with me to give them to me (and talk to me), before that appointment.
1pm: My surgeon hasn't called yet, the slacker! I've been thinking maybe I should get the CA153 (blood) test as well, will ask oncologist when he calls back. OK so the CT will answer the liver and ovaries questionmark as well, so it's an important scan! Best we can hope for (other than that I'm a paranoid idiot and all is fine LOL) is that its the same lumps only that are growing, that there are no new ones, and that the liver and ovaries are clear / no longer suspicious, and that my CA153 shows no change. If all that's the case, I'm going to push hard for the brachytherapy option on the dastardly lumps, and have them go with the assumption that the cancer bugs are still there and nuke away with whatever they think is best, as well. That's my thinking at this stage. I'm pretty sure surgery and radiation are no longer options... I'm feeling better now, calm and collected.
Sunday 6th August: My lumpy area feels awful this morning dammit, sore and lumpy. Have decided will ring my breast surgeon on Monday and discuss it, maybe get her to give it a good feel and see what she thinks. Brent just copped a feel over that area and agreed it doesn't feel good, given our luck with birthdays, and his due in 2 days, I think its bad news. Its just hard lumps all over, little ones, and the one I usually feel feels maybe bigger. I'm bummed :o( I can't quite believe it, but deep down, I know, as I have for a few days now, have just been hanging on hope. Can hang onto that for another day or few ;o)
Friday 4th August: Had my vit C infusion this morning, was running late... Good news with my back, I was able to sleep on my side last night, for the first time in a week! So definately improving! I had another cycle this afternoon - feeling great today :o) I just have too much to do, having appointments every morning of the work week makes it tricky to get things done!
I still have about 12 lumps in my now breastless region, the docs are hoping they've died and gone necrotic, so are happy as long as they don't start growing again. My radiologist said the effects of radiation would continue for months, and that the lumps swell and shrink through that process, so I have to assume that's what is happening, for now. Last night I freaked a bit, they all seemed big, the whole area was lumpy, felt awful, so I was crying etc. Then this morning, sweet as. Its freaky having them still there, hate it :o/!!! My lumps are OK tonight, yay :o) Friends tell me I should stop feeling them, but its hard not to - they're lick a time bomb strapped to my chest that you know one day may start ticking away again - keep wanting to check whether they're ticking or not :o/!!!
Thursday 3rd August: The lump is small again - enough to drive me mad! (I feel them way too many times a day now - bad habit!) The areas not worrying me so much now, still feels weird, goes through patches of tightness, then pain, then fine, then stabbing pain etc etc. A complete guessing game. Thing is its basically the whole radiated area that feels this way, so I'm putting it down to that. The biggest lumps still comes and goes, even within a day or an hour, right now its feeling kinda biggish, this morning, couldn't feel it hardly at all... no word from oncologist yet. I'm starting to get just how whacked the public system is :o/!!! If no appointment made before we leave, we've get get it done privately as soon as we return.
Busy! Busy! Had my second physio this morning, man is my back in bad shape, spines all locked up and all my muscles or whatever they are over my entire back are sore as when any pressure applied. Got a few weeks of physio lined up to get things back on track. Worst area is of course my upper right, all sensitive from all the radiation, I almost jump off the table when she's working there :o/!!! Then made appointment with eye specialist to examine my eyes, the day after back from Fiji (they have not come back to where they were pre chemo) and booked the dentist for Tuesday - teeth starting to cause me grief - silly me didn't look after them during chemo either!
Had Lydia's parent-teacher interview this evening. She's doing very well, ahead of her age skill-wise, well behaved, super polite etc. She is over-sensitive and unsure friends-wise, lacks confidence. All things we knew... she's just sensitive to what's going on with me and its affecting her. Will work on inviting her friends around to play again, see if that helps. Considering all that Lydia and Emily have witnessed me go through, and the things other adults say to me in front of them (like "OH no you have cancer, my .... died of that" (?!?!) I think they're doing admirably for such wee souls :o)
Wednesday 2nd August: My back's OK, I'm not complaining, its just niggly now, should improve each day with all the exercises and treatments - man am I out of shape, I blame the chemo, really want to get back into full exercise ASAP! Was just getting back into it when I got the nasty flu! Lumps not so worrying today, they really do seem to go up and down - weird?! My oncologist is chasing up the appointments for me, so that's good...
Tuesday 1st August: My lumpy area is still worrying me however I have to say - feels tight as, I know that feeling... have been telling myself its just in my head but... no... just left a message for my oncologist to call me - see when next scan is planned, think we should bump it forward... one lump is still very easy to feel - hate that! My backs pretty good this morning :o) Massage was great - PAINFUL but did the trick. Have got to go back Thursday morning, I was tight as all over! Feeling just devine now :o)
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?!!!
Click here to contact Sonia