Liz's colonic journey

Archive for February, 2012

Dripping again – something about wheatgrass?

So getting ready to go for chemo today – just assuming the blood would be good despite my chemo sniffles  (how quickly we forget the happy dance moves) – I tried to get into my lovely size 10 Gloria van der Bilt jeans bought el cheapo (R40) at Meltz last week.  I couldn’t imagine lying around in a lazy boy for six hours being that tightly ‘packed’ – unless I lay prone all day, which  would make texting and emailing a challenge. I wore my size 12 ancient Jeeps instead. A bit baggy but I am becoming a label queen!

This wight gain, I think is a Good Thing – bones poking through skin is uncomfortable especially around the bum area! Be thankful for having a bum!

This week I’ve had three swims in the pool working my legs, and two “Pepper round-the -block” 1km walks with my ankle weights. Yesterday I had a swim and a walk. I feel so much stronger – so hopefully some of the beefing up is actually muscle-building, not just fat from the Spiga D’oro pizza I enjoyed on Friday celebrating Tarryn’s birthday, or the mutton breyani on Saturday celebrating Carol T’s birthday and entry into wisdom! Both lovely occasions and time to mellowly converse with special people, Jenny, Paulette, Jax and Brigitte (don’t ask about the stabbed hand – or rather ask her), and Sally on Saturday gave me a lovely dose of hugs, then Ruth, George, Lee, Carol and Callie topped it up with loving speeches and the honesty that makes for wonderful relationships . I was filled with a deep sense of satisfaction when mirth wasn’t dominating.

The muscle building thing is interesting. I think I must have posted about the BBC4 Discovery podcast I listened to which  upended the theory that muscle shrinkage is the result of the body using that energy. The new theory is that what gets wonky with age and illness is the body’s ability to process proteins and convert them to muscle – because they aren’t experiencing resistance and the demand for muscle  that triggers the whole protein-processing process . (That’s probably very simplistic but that was my understanding and that’s the theory that I’ve been working on.)

I’m putting down my good feelings to my 2 fruit – 5 veg  a day diet with a quarter carbs and proteins (who knew cottage cheese tasted so good with chillies!); your huge support and caring;  getting some exercise (my next goal is making 2kms around the big block with Pepper); Alison’s ‘Healing meditation’ CD which I listen to every night when I go to sleep, and the excitement about heading for Oz in two weeks time. And that’s not counting the visit of three angels that Joan organised. Anyone wanting a visit – let me know.

So I’m going to have fun on Saturday getting my hair sprayed pink  and green at the Cansa Shavathon at Pinecrest Centre. I think I’ll hang on to my Number 4 haircut for now. Not as brave as Karen and Simon, who went the whole hog (bald and looking good) a couple of years ago when my dad and lots of their friends were sick.  Also hanging on to my fuzz is  practical – I can’t tell you how cold my ears get even in this heat. Love the heat because I don’t ‘zing’ above 23 degrees which is why I’ve been enjoying my swims.

I think I might need to actually “join a gym” (gasp – another identity repositioning!)  where they have a heated pool , when we get back from Oz. The gym has to have a Kaui branch – I tried their fresh wheatgrass and apple shot on Sunday after our trip to Dischem in Hillcrest, to stock up on all the bits needed for managing side-effects. I can report that it tastes like….grass… just like when you chew the end of a stem of veld grass, except a lot of it . I  guessed that they juiced at least two big handfuls of the fresh wheatgrass growing in trays. At least it tastes like grass before it goes through the cow – a huge advantage over the powdered stuff. I don’t think the apple juice option is really worth it – it still tastes like grass not apples, so lets be honest about it and take the shot straight!

I’m quite excited about the TES workshops we’re having next week at Edgewood with Mieke from Sweden and Anastasia from the US, on self-study/practitioner research. I just hope that my new muscles stay good for the post-chemo week, because I think it’s going to be very interesting and fun. Especially if everyone shows up sprayed pink and green!

See you later and thanks for reading.

Advertisements

Quick Update: All Good

I’m strong. I had a half an hour swim yesterday after our 3 and a half hour meeting at work (and a brief nap when I got home). My legs loved being in the water and paddling up and down – I did have to consciously remind them how to flex at the ankles and move to propel me forward. There were a couple of moments where they’d forgotten and I just stayed in one place. It made me laugh. the water was warmer (29C) than the boardroom had been, so there were no zings in hands and feet (or other sensitive body parts). Just pure freedom and weightlessness – it was fabulous. I floated for a good 15 minutes under the Leopard tree watching the mannikins at the feeder, disappearing clouds (cf Richard Bach – Illusions) and watching the giant rose beetles amongst the tree’s flowers. Pure joy.

So while it’s true that I feel the need for a nap on getting home from work, this week between 2.30 and 3.30, my legs have not felt seriously wobbly weak since Monday. They threaten occasionally, as they did yesterday when I forgot that I’ve been conserving energy by using the lift up and down from the office. I went down the steps and the pins objected on the second flight of stairs. I love railings!

Crouching down in the shower to scrub my toes is sometimes an interesting challenge. It’s necessary because the chemo makes them take on a blackened tinge. We had a bar installed in our shower, when Pat’s mum was with us, so you can grab it and haul yourself up in these instances. And one just outside the shower door for steadying yourself up and down the little step. It might not be pretty but it’s seriously practical. I’m glad for that facility, even though I’ve only had to use it on Monday.

I’ve two big things on my mind at the moment. One is Robyn Scott of the Highway Mail’s editorial about her experiences with chemo brain and not being able to find her parking ticket and being harrassed by an impatient bullying man because she was taking too long to find it. The worst was her frustration at not being able to think of a quick comment – as a woman of words and wit – a hard thing to deal with.

The other is this blog post  by a friend of my friend, Karen in LA. http://www.salon.com/2012/02/20/now_what_life_after_cancer_treatment/
I loved it for a) the hope of recovery from stage 4 cancer and b) for her sheer authenticity in describing how ‘cure’ might be experienced. She captures so well how normal changes to new normal all the way through this process. It has become normal for me to get bloods done every second Tuesday and to show up for chemo the day after.

I guess what is stopping me from settling into this routine and its identity is the unpredictability of when the post chemo side-effects will hit. This week it was Sunday/Monday, last time it was Thursday/Friday.

In the meantime my food obsession continues. As a person who could go days not eating breakfast and lunch, I now eat something roughly every two hours. Today’s work lunch was a masterpiece which I wasn’t able to show off because everybody was working so hard, but I will describe it – whole wheat bread, cottage cheese, Norwegian Salmon, a touch of sweet chilli with some coriander from the garden and lettuce. This from the person who knew how to heat baked beans! New identities indeed.

Still it appears to be working and maybe the notion of anything as fixed as one identity and the predictability associated with it, is silly – maybe as ‘beings’ we are meant to be moving continually in all dimensions.
So I’ve decided to ‘flow’.
Thanks for your thoughts and concern. I don’t mean to scare you when I don’t blog, it’s just that another reality needs to merge with the post-diagnosis one.
Also I hope this makes sense – if not it’s not chemo brain it’s just the nature of mine to dive and blow bubbles,

Yeti Bubbles

I meant to reflect on CT scans and the good news that the tumours in my liver are down by roughly 20% again which leaves the liver nearly 50% clear. I think I’ve mentioned before how weird it is to look at your own liver in a scan and not really comprehend that this organ is doing its thing in your body as you are looking at the scan. I think it feels more intrusive/vulnerable making that being naked. It’s a very weird feeling to look at yourself naked from the inside. How brave am I? – I’ll share just one shot of my vrot liver now- there are 87 of them! The grey shadows in the liver lobe on the left are the tumours.

Now CT scans are an experience in themselves – much better than MRI which is an hour in a thrumming noisy tunnel without being able to move but picks up nodules of less than 2 microns, or the terrifying Sonar where they can tell you straight away that you aren’t looking good.

The first thing for the CT scan is to drink a litre of dye reactant – which tastes like stale water – over an hour whilst reading old mags or listening to a new audible book. (Guess my choice?) Hard to do if you are faintly nauseous, but better apparently the radiographers say than when they flavoured it with aniseed!

Then you take of all your clothes – nylon underwear not good – and jewellery and put on one of those charming hospital gowns and walk into the freezing CT zone. There you get loaded on a platen with your knees and head cushioned, and covered with a blanket,  very welcome at that point and fitted with a needle in the arm. (They don’t use the port because the dye bungs it up.) The platen moves up and you slide into the ring of flashing lights – a bit like Stargate. Then a plummy British accent says “hold your breath” and a few eons later “you can breathe again”. Thanks everso!

Now that you are through the ring they inject the real dye, which burns like crazy, then you get a weird chemical taste in your mouth and the next thing to hit is a flood of warmth in your nether regions which makes you think you’ve wet yourself. Pleasant in some contexts perhaps, but not this clinical one. Then you slide back through the ring, watching the pretty lights go round and round,  holding your breath to plummy instructions and then it’s all over. You totter back to change into your clothes remembering later that your specs are in the CT room and you can’t see where they are!

(Congratulations Rosh, I met one of your cum laude to be B.Tech graduates, I hope she does the M she plans! She’s good. We need lots of research in this area!)

We had to wait about two hours for the scan results to get back to Doc Landers, so we went for breakfast. We rwent Churchill House but discovered it was being fumigated and covered in a tent – so no wonder we didn’t find it till the third trip around the block and instructions from Delysia! She recommended 191 Musgrave Rd as an alternative and a fine alternative it was. Good decaff in a garden environment.

We then saw Doc Landers and saw the comparative scan. I truly was shocked at how bad the October scan was compared to this one. I truly didn’t realise then how sick I was. I still don’t feel like a sick person! He says he’s going to chat to the radiography guys about RFA and my case – we’ll wait to hear. Apparently previously they haven’t been real reliable in showing up for appointments, so he’s a little worried about making any promises. In the meantime, it was a normal chemo week with bloods on Tuesday and more happy wheatgrass dancing.

I drove myself in to my Wednesday long chemo session and was feeling good after and drove home without killing anybody. I saw Wendy on Monday getting scanned and Wednesday having bloods. I think they are giving her a chemo holiday because she had a throat infection last week and was feeling pretty low. Her bloods were fine but she just couldn’t deal with chemo this week. I guess after 12 sessions last year and 6 already this year it can get very old. She feels grotty on the chemo days whereas I’m blessed with feeling pretty strong whilst dripping. She was still upbeat though and planning a trip with the church to Mozambiquan rural areas in June – that’s brave! I’m not sure I’d be happy to go 3rd world in a weakened condition. Remarkable woman.

It was lovely to come home to the gorgeous flame lillies that Ruth dropped off on her scoot through Pinetown.  Thank you Ruth for that upliftment.

Today, Pat and I finally got her power of attorney documentation sorted out with ABSA. It’s been a two nearly 3 visit/standing in queue thing to do, because banks don’t except attorney’s letters to this effect. Who knew?

It did involve a two block trek up to First National to get bank statements – apparently a marriage certificate and proof of residence wasn’t enough to prove that Pat wasn’t holding me at gunpoint to steal my money (all the millions!).

Seeing as this happened after second bit of chemo and picking up my ‘takeaway’ pump. I was already feeling a bit worn. Oh yes, and the guys in Musica (where I went to wait for Pat) wanted to strip search me because my Mac triggered the alarm as I left. We know it was the Mac because it only pinged when the bag went through. I avoided the strip search and any further attempts at intelligent shopping and went for a decaff skinny latte and bran muffin instead.

So after that and while Pat sorted out her international driver’s license, I ran away to work. There I had a lovely time discussing tomorrow’s Pioneers session with Bwalya, who has actually picked up running the course due to my absence with her usual style and panache. Then finding out again how amazing Sibongile and Shubs are at arranging the TES project self-study workshop on the 4th, 5th and 6th March at Edgewood with Kathleen, pretty much carrying the  project leadership can. All three of them doing jobs that really aren’t theirs with such grace and care. Thank you all.  And chatting to Gita about her Phd – it will happen Gitz! One step at a time. Got a lovely hug from Mary and Denise and some belly aerobics from her, Peter and Pregz. It felt good to connect again.

I really hope that the chemo doesn’t knock me flat again next week, because there’s so much exciting stuff happening at DUT. It’s a good place to be around. And wow!  2 direct 100 MB internet connections to and from the PMB campuses and the Durban ones. Well done Vijay and team. That’s going to make life so much easier.

After sounding so with it – I’d better confess that my down moments have now been reduced to playing Yeti Bubbles – because Windows 2007 doesn’t have Spider Solitaire. Yeti Bubbles is quite good – you have to shoot lines of colours with whichever colour is coming out of the canon. You have to clear the screen before it hits the deck. I liken it to zapping tumours only prettier.

I think that pretty much brings us up to date. I do understand why I’m feeling a bit tired tonight. I’m excited at seeing what Bwalya’s Pioneers have wrought tomorrow. And if I’m strong I’ll stay on for the TES mentoring-researchers chat session.

Try Yeti Bubbles it’s fun!

❤ xxx

Quick update: Scan results

I seem to be rushing around (without actually moving) like a headless chicken lately. I meant to do a full blog today but ran out of time. So for those of you who haven’t heard – digital devices are crazy !- the scan results were good – about another 20% reduction in the liver nodules which is the target at the moment. I have to admit that when Dr Landers showed me the comparison to my October scan I was stunned at how bad it was then. I didn’t realise how seriously my liver was compromised at the time. Probably because I was still stunned by the diagnosis and we were just doing whatever came next. (“Sorting out my affairs”- the movies would call it). Now though the scan is still a bit scary, it shows my liver as nearly 50% clear. I’m feeling so much better than I did in August at my 50th and I think I’m looking better, despite the chemo. It makes sense now that my liver has a chance to look after itself. Doc Landers also said that he doesn’t think the spots on my lungs were cancer nodules after all, and everything else down below seems to be operating effectively – so all good at 32.

I did my blood tests today and if they’re clear and they should be, if the way I’m feeling is any indication, I start cycle 5 of chemo tomorrow again. Nice to know it’s working.
I need to add that Doc Landers congratulated Pat and me, and all the people who are loving and supporting us – he knows it makes the difference.

Thank you for holding thumbs and crossing all your body parts – you can relax and work out the cramps now! Thank you for caring,
Love, Liz
PS. Can you do a postscript on a blog? I’ll say more with pics tomorrow.

Since as my sister said, and I quote. “Oh and now that you’re not ‘kicking the bucket just yet’ maybe you should hang on to some of that dreaded disease insurance – I’m all for having you around for years to come and me slumbing it in Auz!!!!” Nope, we’re going to do the Australia trip in style!

Waiting on the porch

Well today we’re off too get my innards scanned by the CT machine, to see whether the chemo has

done its job. Holding thumbs.

Gotta go get ready, the appointment is at 8.30, so I’ve for

to cut short my sitting on the porch time. The monkeys have been and the new bed is looking lovely, don’t you think?

image

image

We had sparrows at the feeder for the first time ever. Apparently having sparrows is a sign of a healthy environment.

image

And I’m posting this from my phone!
will let you know how out goes today.
Love to all.

Time traveller

It’s taken me until now 12:15 to get my feet under me today. On Monday, I worked from home, but trotted in for my psychologist appointment. Actually hardly trotted, because it was an uphill walk and her rooms are at the top of two narrow flights of stairs – so it was hard work – not made easier by my feeling that I didn’t want to be there. Probably denialism. Anyway when she missed the appointment I felt like a kid who had permission to be let out of school early. Luckily getting away was a downhill walk. I think maybe I should make an appointment when I need it, rather than having a fixed once a month session. Of course, the secret is knowing whether one needs it or not.

I confess that I’m feeling nervous about the CT scan next Monday. 1) that the results continue positive and 2) that I don’t feel as vrot as I did doing and waiting for the last one.  I’m hopeful though, because the leg weakness hit Mon, Tues and today. Last time it hit Sat, Sun Monday.  As I’ve said the ankle weights seem to help with stability, so I wore them to go into work yesterday. It’s a long march from the outside of the Currie’s Fountain parking lot up to e-Learning, especially carrying a laptop, handbag and lunch bag. The team meeting was fun and productive and then I had the delight of chatting with Andrea about her M project – it’s going to be so interesting and I hope fun for her. Then back to meeting.  Can you see why work is fun – look at these hardworking people (and the larny chairs!). My spot is the one with the bag on it.

So I was at work for 5 hours yesterday. I left around 4pm, and was pretty knackered when I got home! I had a 15 minute nap but then the Gate Doctor came (they had been supposed to arrive in the morning) to fix our intercom system at 4.45 and took great delight in trying to get the bell to ring. Needless to say the nap was shortlived.  They were supposed to come again this morning and also haven’t arrived. Bit slack. I hope they read this blog! I seem to have got even more of a ‘time-issue’ than I used to have – not a Good Thing in Durban – does anybody arrive on time for anything? It’s so disrespectful.

Happily, the team gave me things to work on which makes me feel less of a spare, flat and bald wheel. Given my legs yesterday and today, I don’t know if I can do a two hour training session standing up – the side-effect of the chemo are so unpredictable – it’s really difficult to say that “I’ll be available” at any given time. And successful training means generating the energy in the room when everyone is stuck in their own heads and concerned with their own issues. That takes energy. The one predictable good day according to the pattern seems to be the Thursday of chemo, but which would get me into work at 12ish and carrying the chemo pump which might be off-putting for trainees. It can be stuck in one’s pocket but the pipes need not to get kinked!

So today’s plan was to work on the business rules and do some prep for our new program design meeting tomorrow. When I got up everything felt good. What a beautiful morning. The patio refurbishment is underway so all our ‘gedoentes’ are scattered around the garden. It’s looking good. Here’s the process pic and the semi-after pic of the new bed created by the wall. It’s going to look lovely.

Wasn’t it a gorgeous morning at 5.30 this am? I haven’t sat at my desk all morning – series of naps – until now when I’ve felt energetic enough to work on the computer. I’m quite looking forward to focussing and writing a bit.  Pat and I  can’t go out until 3pm, though we need groceries quite urgently, and Pat’s visa pics, because the paving man neglected to tell us that we can’t walk on the patio until the sealant dries. Both patio areas are sticky and Pepper’s 4 legs are crossed in knots holding it in!

The grand thing about feeling ‘pap’ is the comfort in which to do it. Our recliners are a hit. Pat and I settle of an evening for a dose of telly and just veg for an hour or so. A worthwhile investment, if you are thinking of buying one, don’t wait – you need to get the use of it when you need it!

I really am appreciating how much modern working people do every day and in South Africa proportionately – how few people are actually working. It’s no wonder people look tense and tired most of the time. And when you are watching and worrying about kids growing up – it must be worse.  I’m seriously lucky to have the time to be able to work on stuff at odd hours when it’s convenient,to be able to take the 15 – 30 minutes for the washing up (even with a dishwasher!) and to be able to take the time to appreciate Jim and Jean in the palm tree – here’s proof – if blurred. Gymnogenes are twitchy.

For these things and all the blessings of friends and family I am grateful, and now know how absolutely critical they are to well-being.  I’m also thankful for having an understanding and caring employer – if you can think of a large university as ‘an employer’. The fact is that it’s the individual people who make up the university, and make a difference in the name of the institution. They are amazing.

I wish the frustrated students had enough of a view of the staff and workings of the DUT to actually understand how much caring happens there all the time – in spite of incredible odds and challenges. True there are some who don’t care, or care more about themselves than anyone else,  but the majority are very Care-full. If students understood this, maybe they wouldn’t throw bricks at people and property.  The SASCO unrest at DUT made me think about time and how in the not too far future, these students as adults, might regret/doubt their rightness. I know I still feel twentyish in age. The Self doesn’t age but all of a sudden one becomes aware that one ‘knows stuff’ and wonders how that happened. And then wonders how many lifetimes it might take to really ‘KNOW’ rather than making an educated guess at the truth of things.

I don’t know and how magic it is to say that without feeling stupid. I like being 50!  

 

 

At home – visuals

The week began with the fun of watching Joan and Kathy doing the PDAC. I feel bad that I didn’t see Denise come past but good on her! I want to be her when I grow up!

And there was the swim:

 Since then Pat’s given me a haircut – because the hair was sticking up every which way. So I’m back to a number 4, with the hair a bit thinner, but strangely growing out brown not grey. Weird. Hopefully this will last till the CANSA Shavathon on the 4th/5th March.

So much to be happy with in this week. I went to work 4 of the days – nice to see everyone. Planning our TES workshop for the 4th/5th/6th March was fun on Thursday with Kathleen, Sibongile and Shubs. I think it’s going to be fascinating. Friday’s pop in to see Gita’s new group of Pioneers start off the e-Learning adventure was grand.

All the Mistresses of Mastery (my M students) are making me very proud with their thinking and writing (how about a new blog post Bwalya?). Not that it’s about me, but it’s really exciting to watch the growth and insight. Did I ever mention that I love the ‘real’ bits of my job?

Thursday’s evening with Paulette, Sam C, Sioux, Nicky, and Bev was divine. Great conversation and great company. And I had a cheat night – seafood pizza with extra garlic and chilli, AND a glass of red wine. No ill-effects on the surface of things. Part of me worries that that means I’ve acclimated to the chemo and it’s not working anymore, yet I feel great.

And what a lekker surprise when Kathy just popped in for a visit and a paddle in the pool – me too – the water’s so warm there are no zings.

It’s probably not surprising that today being the first day post-chemo – and the busy week – that I was feeling a bit lomp today, but there are joys – even when the clouds come up.    I started the day with a Mango/nectarine/lemon/mint smoothie (with Bulgarian yog). I think I’ll lose the lemon/mint next time. Victoria enjoyed hers, but Pat pulls a face like a baby being given Nestum or something she doesn’t like. Texture is everything for her – she raved this week about the taste of the lettuce from our garden.

It hasn’t been a hectic day – more of a sit in front of the computer/s/gadgets and make them work kind of day, with knees were doing their wobble thing. Eventually in spite of having Skype open on the Mac, my iPad and my PC, Sam caught me on the phone, after a week of trying to contact me.  The beauty of Skype is that Sam and Mum can see that I’m looking as good as I’m sounding. At least that’s what everyone says. I’m feeling so smart to get it working. Maybe that’s why they call them smartphones – they become your extended memory and connections are a snip. I did have a great Skype call with Lou last night – on my phone. Mind you, Lou must have been feeling sea sick with me moving around with it in my hand. So nice to catch up with my sisters. I think everyone should have sisters -they are a port in a storm and sense when nothing else does.

Pat and I prowled the garden with our smartphones looking for shots today. I think I won the garden photo competition with the spray of Mandevillia – that riot of yellow. (Yellow is speaking to me at the moment.) Pepper managed to steal the giant bone that Rocky brought home from school, but Rocky has re-comandeered it, and won’t come in till he’s finished in case she nicks it back. I think he’ll be out all night. The other excitement was noticing that the next crop of pomelos are growing. They only finish growing in October/November so these look like they are going to be giants.

Watching the bronze mannikins and the canaries at the feeder is a joy. And there’s a sunbird nesting in the tree at the gate, the gymnogenes squeek in the palm tree in the drive – haven’t got a chance to get a shot of that. Maybe a picture of the bespattered driveway will do?

I’m specially pleased that I’ve mastered the landscape/stitch feature on the phone too.

We’ve just finished watching Chicago – lent to us by Karen R – and Pat loves Catherine Zeta Jones – so she was fixated.

Gordon from PaveSeal is coming on Monday to do his magic with the patio – I’m so looking forward to not looking at a sea of weeds growing through the cracks – Kathy even started weeding as we were chatting! It’s bothered me for years and now it’s going to be fixed – yay!

A lovely drenching rain is falling now – no thunder yet – so I think I’ll sit back and listen to it and watch Fuzzy Face being cute.