We are (not very) patiently waiting for things to unfold.
We thought that we had developed some skill and resilience in exercising the gift of patience.
Perhaps we are not quite as fit as we thought and need to 'exercise' a bit more!
We have no more news yet.
I think I just did!
When we were growing up there were a whole series of "good news/bad news" jokes going around. One I remember had Sgt Schultz of Hogan's Heroes saying to the prisoners (imagine the thick German accent as you read):
 |
"I haff ze goot news und ze bad news. Ze goot news is zat today vee haff a change of undervear. Ze bad news is zat Hut A must change viz Hut B!" |
Today's visit to the oncologist was a bit of 'good news/bad news'.
The good news is that the PET Scan did not reveal any new areas of cancer activity in Sue's body. Although the cancer is still in her bloodstream and therefore present throughout the body, it is not currently visibly active anywhere other than the liver.
The bad news is that the existing liver lesions, as well as growing in size, have also increased significantly in 'intensity' - by a factor or 4 or 5. There are numbers attached to all of this that relate to the rate of radioactive glucose metabolism, but the basic summary is that the liver lesions are active and worsening. Then again, the good news is that at this point the liver function is not at all compromised and Sue is feeling well.
In exploring the future treatment options, the oncologist is keen for us to consider an all out attack on the liver lesions while Sue is well and before they compromise the function of the liver or nearby organs. The good news is that there are a number of possible options including surgery, Radio Frequency Ablation (RFA), and Selective Internal Radiation Therapy (SIRT). The bad news is that all of these are quite specialised procedures and cannot be done in Darwin. The good news is that there are such specialists around including some in Adelaide based in Flinders Medical Centre. We expect to be heading back to Adelaide within a week or two for a consultation with a liver specialist (this is both good and bad news I guess - maybe they cancel each other out and it is just 'news'?). Whatever the ultimate recommendation as to treatment, any direct action against the liver lesions needs to occur pretty quickly.
There was further bad news. Additional pathological analysis has revealed that Sue's cancer has a BRAF Mutation V600E. I can see you all nodding wisely as if that means something to you, but let me explain anyway!
This particular mutation only occurs in only 5-10% of patients with colorectal cancer. It is much more common in melanomas and the like. It is a particularly aggressive cancer type which also does not typically respond well to currently available chemotherapy strategies in colorectal cancer patients. To quote one journal article, "it is a negative prognostic feature" - translation "if you have this mutation you have a worse likely outcome than someone who doesn't". This all begins to make sense as we look back at the rate and aggression of the the return of Sue's primary tumor in her (now missing) colon.
Any more good news? Of course! Sue is already on the other side of statistical predictions for average survival for BRAF-mutant patients - that is certainly good news. She is also currently experiencing the best level of wellness since before her diagnosis nearly 18 months ago - gotta see that as good news. Want more? OK. We are blessed with family, friends, colleagues, neighbors and blog-readers who apparently love us and care about us - we are neck-deep in supportive community. We continue to enjoy and cherish together the particular sort of intimacy and tenderness that comes as we walk this uncertain path - very good news indeed, and something we would not be quick to give up even if we had the opportunity. And we still maintain a healthy sense of humor and appreciation for the ironic, ridiculous and absurd - how good is that!?
The Bible speaks profoundly of a wife of noble character:
A wife of noble character who can find?
She is worth far more than rubies.
Her husband has full confidence in her
and lacks nothing of value.
She brings him good, not harm,
all the days of her life.
She is clothed with strength and dignity;
she can laugh at the days to come.
She speaks with wisdom,
and faithful instruction is on her tongue.
Her children arise and call her blessed;
her husband also, and he praises her:
“Many women do noble things,
but you surpass them all.”
Charm is deceptive, and beauty is fleeting;
but a woman who fears the Lord is to be praised.
Sue is such a woman, such a wife, such a mother, such a friend. We are blessed indeed.
Yesterday's post offered no concrete information to those wondering about Sue's present physical/medical condition. Let us fill that information gap now.
After leaving Victoria we drove to Adelaide to celebrate Trevor Bateman's (Geoff's Dad) 80th Birthday. What an enjoyable, precious and life-honoring family time it was.
Despite, or perhaps because of, 4 weeks away and lots of travel by air and road, Sue is feeling well. The ever-present tiredness remains, and there are the odd niggling annoyances of aberrant body-functions of one sort or another, but otherwise she is in pretty good shape and of good spirit.
A day or two after returning to Darwin Sue had yet another CT Scan and blood test, and a few days later a visit to the oncologist. Ever hopeful of a little more certainty upon which to frame our future planning, we were once again left unfulfilled!! Ah the life of those who have feet planted firmly in mid-air!
The CT Scan showed no obvious new cancer sites but did indicate that the liver lesion(s) have increased in size. Interestingly there were interpretive reports from two doctors who both agreed that there was a notable size increase but scaled it differently. Applying a coarse mathematical averaging to their opinions, one could say that the primary lesion has doubled in size in the last 3 months. In case you have horror movie visions of 'The Blob' or some other rampant city consuming growth, understand that even at 'double size' the lesion is still only perhaps 10mm x 20mm and is barely palpable (able to be felt) by the oncologist on external examination. Ironically, the blood tests showed improved liver function!
In light of this, the oncologist put the possibility of surgery on the liver back on the table for consideration. This is a more intricate and 'serious' operation that cannot be done in Darwin. This possibility only makes sense for consideration if there is no other current cancer activity evident in the body. The best way of determining this with more accuracy/certainty is (another) PET Scan.
So..... we are off to Adelaide again tomorrow (Sunday) ahead of a PET Scan on Tuesday and return home Wednesday. Ahh the life of the frequent flyer!! We decided to treat this as a bit of a 'mini-break' and stay in a hotel in the Adelaide CBD instead of with family this time.
Depending on the outcome of the PET Scan, when we go back to the oncologist on 28th October, he intends to recommend between two options:
Both of these require a sacrifice of current well-being in the hope of future benefit (basically 'a longer life').
We believe that there is a third option to add to the mix:
Obviously we are not wedded to any position and will engage with the specific question after the PET Scan results. Up to now we have had a shared sense of the best way forward for us at each decision point, so are expectant that this will continue with the impending decisions too.
Life is good!
Once again, the days have rolled on and almost a month has passed since the last post. It is often said that "time marches on". This can conjure up images of ranks of soldiers whose boots smack a drum-beat of relentless and unstoppable rhythm as they drive forward. There is purpose and precision, but no deviation or finesse. They advance, careless of anything and everything that stands in their path. The passage of days can feel like that.
Then there are days when "time dances on". Boot-smacks are replaced by sweet music (real or ethereal); relentless forward movement gives way to joyful sway, circling, unfolding paths. The rhythm is not fixed - maybe not even clear - and certainly not constant. These days are free, responsive, joy-filled. We are not slave to the 'dancing days' - nor they to us. They and we flow responsively, appreciatively, even sensually, together.
Over our time away, especially in Yarragon, we experienced many 'dancing days'. Without intention, or even awareness initially, the familiar marching army of work and medical concerns were first put 'at ease' and then finally 'dismissed'. The rhythm of life changed and the 'dancing' began. There were 'slow dancing' times, and (short) bursts of energetic free expression. Some times were beautiful and balletic; others 'awkward', tentative and private. We danced these days alone, together and with friends.
This was a sacred and precious time of learning and soul-deep rest. God grant that all our remaining days all be danced!
Time, embrace me hold me near
Lead me in the dance of life, be it brief or long
Melody sweet and cadence mine
Teach me the steps and gently guide
So to surrender the dance
To the giver of days
These two photos capture the way Sue and Geoff determined the division of labour in painting the main bedroom of Retreat Cottage.
Sue seems to have found a new 'happy place' nestled at the top to the stairs. Yesterday she didn't answer when I spoke to her and I found her asleep, lent over with her head on cushion on the landing. It was a strangely warm and tender sight - at home, at (second) home. Long may we enjoy this easy harmony of life and spirit.
This trip to Yarragon is not only about visiting Tessa and Jim (and enjoying the cold, wet and occasionally wild weather!). We have been spending more time down in Yarragon over the last year, and hope to continue frequent visits together for some time to come yet. In the further future, Geoff anticipates splitting his time more between Darwin and Yarragon. We have therefore bought, and now taken occupancy of, a small two bedroom 'retreat cottage'. We will stay in it on future visits and want to make it available for use by family and friends at other times.
Retreat Cottage, Yarragon
Previously, the cottage had been tenanted so needs a bit of 'loving care and attention'. Also, it was completely empty. We have therefore been engaged in the enjoyable, though somewhat daunting and tiring, task of setting up a home from scratch again - something we have not done for 34 years. We are able to confirm that we were more energetic then, though perhaps not as wise and experienced!
We were in two minds as to how to go about furnishing the cottage. On one hand we wanted to do it slowly and hunt for 'just the right things' hopefully at 'just the right prices'. In reality we can't be sure of Sue's continued capacity and general well-being in future visits, especially once chemotherapy starts again, so we decided we need to 'just go for it' and try and get it all done this visit. We are therefore in the midst of a (energy-moderated) flurry of shopping, repairs, painting, styling (whatever that is), and general (second) homemaking.
Fortunately we had advice and assistance for renown Swedish furniture and style guru Ingvar Kamprad from Elmtaryd farm near Agunnaryd. Yes, IKEA derives from the initials of the founder's name and childhood home!
Saturday saw us heading back in toward Melbourne to visit IKEA with Tessa and Jim. As those of you who have visited an IKEA store would know, the place is huge! You enter at one end, are forced to follow a winding path past every item on sale, noting down the secret code for each item you want to buy, then get spat out into the warehouse where you walk the maze of aisles and bays to collect your loot before wheeling it all on huge trolleys to the cash (credit?) registers. It is a journey so long and arduous that there is a huge cafeteria in the middle so you do not die of hunger and thirst on the way!
It was clear for the outset that Sue would have limited capacity to walk so we booked a loan wheel chair. It was a bit odd having Sue nimbly walk up to the counter to collect the wheelchair then sit in it and be pushed away. The woman at the counter didn't blink - maybe she has seen it all before?
As it transpired, we were in the store for 6 hours (no, that is not a typo!!) and as the day went on Sue was smiling more smugly as the rest of us begged for a turn in the chair. Sue coped very well, even when the rest of us forgot that she needed pushing and abandoned her as we pressed eagerly forward to experience the next alluring item. In the end Sue worked out how to wheel herself quite effectively and even overtook us once or twice in a steel-wheeled blur.
By the end of the day we had three large and one huge trolleys of 'furniture and homewares' (basically a house-full). That meant that Sue, in a wheelchair, had to push one. If you close your eyes you can probably imagine how it looked! The oddest thing was that no-one gave us a second look. Maybe such things are quite normal in IKEA-world?
Not to bore you further, I will jump to the end of the adventure where we JUST managed to load everything into/onto a Commodore and Jim's 4x4 traytop and head back home! These photos don't even begin to do the day justice but may assist with the mental imagery!
Give us a call if you are ever looking for a few days retreat in the lovely village of Yarragon, West Gippsland, Victoria.
Grace an peace to you all.
Is old news better than no news? I imagine it is, so here is an update from Sue's visit to the oncologist on 2 September - nearly 2 weeks ago!
Basically it was all 'good news'. As was the case with the surgeon, the oncologist was very pleased (and a little surprised) with the speed of Sue's recovery from the surgery. Essentially he reiterated information about the surgery itself. However, by reading over his shoulder, I was able to glean a few additional tidbits of information.
Fact 1: A 470mm long section of colon/bowel was removed
Fact 2: The appendix was also removed
Fact 3: Twelve neighboring swollen lymph nodes were removed from surrounding areas
Fact 4: Histology revealed that only 2 lymph nodes had cancer cells present
Fact 5: Histology revealed the tumor to be a big yukky cancerous mess (my para-phrase of the report!)
As I relayed my covert findings to Sue, she was especially pleased, but also a little miffed, with the news about her (now missing) appendix. She told me that ever since she was a little girl she had wanted to have her appendix out! On gentle exploration, she admitted that it was probably because she saw other kids getting special attention when they had appendix operations rather than actually wanting the surgery itself.... Either way, she has now fulfilled that childhood wish - even if happened without her knowing about it! I did reminder her that her craving for attention was being well served anyway.
Looking forward, the oncologist talked of further weeks of recovery and intentional weight gain, then CT Scan and chemotherapy again. We were comfortable with that plan but advised him that we had already booked flights to visit Victoria (Tessa and Jim) and South Australia (most of the rest of the family) leaving on 8 September and returning on 6 October. He gave the trip his blessing as I suspect he realized that we were going no matter what, and booked the CT Scan and a further consultation with him immediately after our return.
His parting words to Sue were that she should try and put on 5 kgs in the month. Sue saw visions of daily bakery visits dancing before her and said so. Imagine her disappointment when he gently suggested that increased protein intake was preferable. Apparently cancer loves feasting on proteins and will seek them out so if you do not eat enough (additional) protein the cancer will deprive you of the amount you need. What a pity that cancer doesn't like feasting on country baked pastries and cakes!!
As you will now realize, we are in Victoria - in Yarragon in the West Gippsland to be exact. Sue is recuperating well, but still tires quite quickly. That leads on to a story about a trip to IKEA yesterday, but you will have to wait for the next blog post for that one!
A parting piece of practical advice:
If you ever need to defend yourself against a pack of attacking clowns, go for the juggler!
Sue had a follow-up consultation with the surgeon on Monday. Although it was a bit of an effort, she enjoyed being 'out' for the first time since the surgery. The post-consultation latte at Java Spice (favourite cafe) tasted even better than usual....but I am jumping ahead....
At the consultation, Sue's 20+ metal staples were removed with barely a wince or wriggle. The report after examination was that she continues to heal and restore at a remarkable rate! This is a self-evident truth as many people do, in fact, remark on it! The summary of the surgery itself was that it was 'completely successful' and the time for infection or complications is well past.
Her Sue-per Power is either 'self-healing', 'denial' or 'advanced faking it'!!
While Sue still experiences some pain and discomfort, it is now all manageable with over-the-counter analgesics. She is understandably still tiring easily, and sleeping longer and more often as a result. On the other hand, she is also managing to carefully do some selective 'jobs' in addition to feeding the fish (watering, tidying up, simple food prep, making coffee(!) etc). The progress is not completely linear though. Some days are more challenging than others. Yesterday was such a day. Today is yet to unfold...
We continue to marvel at the body's capacity to heal and adapt. We are truly 'fearfully and wonderfully made' and thankful to the Creator for the incredible gift that our human bodies are (yes, even when they deteriorate and fail to meet our (often unreasonable) expectations!).
I am pleased to confirm that Sue was visited by her surgeon around lunchtime today and was granted an early release. She was already packed and dressed in anticipation, and the nurses had already done the discharge papers and arranged medication to take home. Obviously everyone agreed that Sue should have 'time off for good behavior'!! By 2.00 pm Sue was home.
Before heading upstairs to the comfort of her chair, Sue stopped to 'breathe in' the garden and check that we had been treating all her fish well. It was lovely to see her reconnect to these parts of her 'normal life' that bring her joy and peace.
In an earlier blog post it was suggested that Sue's career as a mature aged bikini model was over (before it started). The 13 cm vertical incision straight through the belly button (that is a weird anatomical description if you think about it) stopping just below the sternum, complete with dozens of metal 'staples' certainly excludes her from the mainstream fashion world. Maybe 'Tattoo and Piercing Monthly' might be interested in a few discreet photos?
However, another opportunity may be opening up - that of the 'Enhanced Recovery' Poster Girl.
'Enhanced Recovery' is medical code for, "We know what is good for you. We have recent research findings. So we will get you up and moving very soon after surgery so don't be a sooky cry baby and complain that it hurts!'
As it turns out, they may be right! Sue was out of bed and sitting up a mere 16 hours after surgery finished on Thursday. She managed to stay there for about 45 mins before walking back to bed (4 small steps). She repeated the exercise a few times on Friday and subsequently. Her drain and catheter came out on Saturday and her drip was removed Sunday. This freed her to have a shower and to make (frequent) fluid management trips unaided. She is on a normal diet now (but holding off on the curry vindaloo for a while) but does need my help in finishing her meals!!!!
Of course there is pain, and emotional ups and downs, but in it all she has proven yet again to be a remarkable woman!
We were offered the option of Sue going home today - less than a full 4 days after the surgery - but we decided to leave it until tomorrow.... all things being equal.
PS: I am aware that some readers of this blog feel that I am not taking Sue's illness, and her surgery, seriously. Yes, I hear things! In my defense I will simply say that Sue approves each and every blog post. She knows how seriously I take her/our journey, and my commitment to her in it. She also knows the power of humour, and the 'lightness' that can come from it, as a key ingredient in healing, as in life.
I am sure it says somewhere in the Good Book "Thou shalt not take oneself too seriously" - or maybe not?
Actually, it DOES say to "rejoice with those who are rejoicing; weep with those who are weeping". Perhaps it is not too theologically offensive to stretch that to include "laugh with those who are laughing"? Thanks for doing all this with us. It is a privilege to share it all with you.
"Do it!" said my wife,
"Give them proof of life."
"NT News with Croc Dundee.
Wow, Paul looks less alive than me!
He has had more surgery.
So I'll lay back and heal and see
who has the best shelf-life!"
Proof of Life: NT News - Friday 15 August
After a long afternoon of waiting I received a phone call from the surgeon at about 4.30pm to say that the surgery was complete and without complications. The tumour was large, and surrounding nodes were involved, so the decision to operate quickly was confirmed as a good one! Everything that could be removed was. What cancer is left will get some respite while Sue recovers. After that it should be very afraid “cos chemo’s a coming”.
Waiting in Sue’s hospital room was apparently conducive to poetry writing…..
Flutter of love-fuelled care
gives flight and flocks
with wayward thoughts
careless what ifs and
wild imaginings
to weighted worry form
What bliss is found
ahh sweet relief
from burden’s press
and clutch of fear
in seeing
hearing
holding
Sweet simple joy
deep stare
touched lips
stroked hair
shared whispers
cherished moments
Eternity’s embrace
Heaven’s foretaste
Following our visit to the surgeon on Monday, a few things about the impending procedure are now clearer and more certain.
The surgery will take place in the Darwin Private Hospital, where Sue will also reside post-operatively.
It will not be ‘keyhole’ surgery. Given the nature and scope of the operation, and the desire “to have a good look around”, Sue will be ‘opened up’ (technically called a laparotomy, I believe). That is likely the end of her career as a mature-aged bikini model.
[As an aside: My computer spell-checker does not recognize laparotomy and wanted to replace it with lobotomy - a rather more confronting procedure!]
Previously I said that the operation was to be a transverse hemicolectomy. It is now clear that it will, in fact, be an extended right hemicolectomy. This means that all of the ascending colon, all of the transverse colon and the top part of the descending colon will be removed. The ‘outlet’ from the small intestine will be re-attached to the remnant colon/bowel. Apparently this has a much greater likelihood of positive outcome than trying to join up bits of the colon. We are told that Sue should be able to function quite well and 'normally' with the remaining one-quarter of her colon. Now that is what I call built-in redundancy!!
Thanks for all your communications, support and prayer. I am sure that is a part of why we are both still feeling quite ’relaxed’ about what the coming days and weeks will bring.
PS: Sue intends to turn her mobile off, at least for the duration of the surgery, so don’t expect her to answer calls or respond to any text messages tomorrow afternoon!!!!