Monday, October 29, 2012

Sand(y) in your eye

Well today is a pretty interesting day in the US Snoeks household. Judy had her operation early this morning and is resting in a nice warm solid building with electricity, water, and food services. I'm not quite sure why I'm not there with her!

Hurricane Sandy has started making it's presence felt although we are really just getting the wind side of the storm. Still all major roads have been closed since 1pm so we are hunkered down and waiting to see what happens.

We've had one power-cut, which was restored within seconds but it doesn't bode well for the rest of the night/week I suspect!

Laura and Mike are also here sharing in the adventure as their return flight has been delayed from Monday to Sunday - a good indication of the degree of disruption this storm is bringing!

Now it's 2 hours later and we are on our 12th power cut. Each time it's long enough to knock out the PC, then back it comes. The town of Brookfield is currently at 61% without power so I rather gave up trying to complete this post.

now I post it every few minutes, and update when the power comes back :-)  

I had a call with Judy and she was feeling rather better - just very sleepy.


Thursday, October 25, 2012

Thursday update

Just a quick note to record that the oncologist visit today was very positive indeed.

The MRI came back saying Judy had a beautiful brain.

Judy's liver functions are still in the normal range.

Judy's blood work is also perfectly normal.

Oddly enough we were waiting for our appointment and we heard some Aussie accents. I (naturally it was me) opened my mouth and soon we had a little antipodean corner going in the oncology waiting room. Of the 9 people in the waiting room, 7 were from the really deep south. 2 sets of patients, with partners, were from Australia, as well as the hospital chaplain.

One of the patients used to work for IBM and learned FORTRAN there (a programming language) in the late 1950's. The Chaplains's brother (I think) was one of the 10 people on the team that invented FORTRAN at IBM (in the late 1950s)!

To make the loop complete I had written some really horrible code (in FORTRAN) while working at the Wellington City Council to map the roading system of Wellington, together with all the land use information (Land use is the data used in assessing your city taxes or rates) and the power, gas, and water lines. I have to say that while a lot of my code is horrible, this is the worst I've ever produced. Fortunately it wasn't ever used in city planning!

All quite odd, but nice.

Wednesday, October 24, 2012

Left, right, left

Judy is feeling better again (up, down, up) so we are enjoying the sight of her with washing up gloves on.

Today we also had our meeting with the surgeon and have booked in to have the same procedure done on her left lung as they did on her right. Judy had been feeling shortness of breath, tiredness etc. and an x-ray showed that fluid is starting to build up on her lung on the other side this time. So Judy will have the operation early Monday morning, and hopefully will only need 3 days in hospital afterwards.

We are also awaiting the results of the brain scan yesterday which we expect to get tomorrow at the oncologist.

Thanks you for the many comments, emails, cards, and calls. Your support is a great encouragement to us both. Thanks also for the kind words about this blog, sorry to let the side down but creativity and humor both seem to have taken a sabbatical today.

It is a hard road for us, my normal desire to turn a smile should not mask the burden we bear. It's hard to think of things to ask for help with, just as it is hard for you to think of ways to assist us. However - your contacts, in whatever form, are precious and helpful to us.



Not to be morbid :-)   This has always had a special place in our hearts



Holy Sonnet 6, “Death be not proud”

Death be not proud, though some have called thee
Mighty and dreadful, for, thou art not so,
For, those, whom thou think’st, thou dost overthrow,
Die not, poor death, nor yet canst thou kill me;
From rest and sleep, which but thy pictures bee,
Much pleasure, then from thee, much more must flow,
And soonest our best men with thee doe go,
Rest of their bones, and souls delivery.
Thou’art slave to Fate, chance, kings, and desperate men,
And dost with poison, war, and sickness dwell,
And poppies,or charms can make us sleep as well,
And better then thy stroke; why swell’st thou then?
One short sleep past, we wake eternally,
And death shall be no more, Death thou shalt die.




Monday, October 22, 2012

Welding Cake

Today is Judy's 49th birthday.

I cant say it's the happiest birthday, but as with all things there are things to laugh about. We actually both forgot it was her birthday this morning! I got Troy off to school, picked up some groceries and headed home to get Judy for out weekly visit to see Pezz. Judy was not feeling so well this morning so getting showered and dressed was a stretch goal for her this morning. We were halfway to the hospital when Judy suddenly said 'It's my birthday'. Whoops.

I have to say it's the first time in recorded history that a husband really didn't get in trouble for forgetting his wife's birthday! We had celebrated it pretty well on Saturday with all our family gathered together (plus a guest celebrity from Christchurch in attendance!)

We went out for dinner on Saturday night and went to our local restaurant. Normally there is no problem with getting a seat as it's not doing all that well. You all know the restaurant - it started off as a pizza shack and has gone through 5 other incarnations since then. Well on Saturday night they turned us away as the restaurant was fully booked by a group working to raise awareness of breast cancer.

So today Judy admitted to not feeling so well and Pezz got a bit alarmed when Judy felt faint while sitting on the exam table (twice). Since we were already at the hospital we swiftly had a battery of tests performed.

Her heart ECG checked out OK, but a chest x-ray showed she does have a pleural effusion in her left lung now. To-date it had been contained to the right lung and heart. In the event that this means the hormonal treatment is not working (NOT CONFIRMED) we have a brain scan scheduled for tomorrow. There is not data to suggest it has spread to the brain (Judy still beats me at WELDER and she knows all your phone numbers by heart). She also had her monthly injection to strengthen her bones and they gave her a liter of fluid to help make her feel better as well. That did work and Judy was home from hospital in time to have a lovely meal made by Laura. How lovely? Well Judy had 2 helpings!


Yes Judy also enjoyed a slice of this cake!

So please pray for the MRI tomorrow and Just also has an appointment with the surgeon on Friday. Hopefully a pleurodesis wont be required again, or if it does that it is not as major a procedure as the first was (the heart is not involved so perhaps it will be easier). Judy is quite a bit weaker than the first time around. 

Having typed that, Judy is still awake at 11pm and feeling better now than at any stage today. 

Sunday, October 14, 2012

Quack quack?

I guess news has dried up of late, in this case anecdotally supporting the adage that no news is good news. 

Judy has been feeling well in the context of the past 2 months, we are very grateful indeed for this. Being grateful seems a poor item to report on and has nothing to do with ducks.

Let me see if I can justify a blog....

Some among you, or among your friends, have various cures, treatments, recommendations, miraculous tales to share. We are happy to receive them all but I wanted to explain my attitude towards the fringe elements of healthcare. This will probably offend but you have to remember my medical credentials and accept that I have a voice in this matter :-)

Firstly I realize that those who raise their hopes for better treatment or a cure do so out of a desire to help, encourage, give hope. This is welcome, it's nice, it's encouraging.

Firstly - cancer is quite complicated. I know a lot more about breast cancer than there are people that I'm smarter than. Cancers are different from each other so what happened to your friend when they drank distilled bat plasma under a full moon does not always have much application to our situation. I try to not get into too much medical jargony detail here but every time I talk to Hans I have to have a wee lie down until my head stops hurting.

Secondly I know that alternative treatments are a popular avenue in many parts of the world and I don't know anything about their specifics. I haven't read the studies. I haven't passed an oncology board examination. I haven't even had much exposure to alternative medicine. I'm not knocking the field, if these things have helped you, your friends, cured your niece Anastasia then 'cool'.

Thirdly this is my take on things so you know how I will respond to your suggestions, or what barriers you have to pass to convince me to pay closer attention.

Judy, whom I love, and love to talk about, has been incredibly healthy all our life together. I ate Big Macs and fries for lunch and dinner and Judy ate salads. Judy has always exercised and I smoked. Judy loves vegetables, and I dream of developing a pesticide to eradicate Brussels Sprouts from the world. It's a noble cause, click here to help fund my research.

We have been eating organic stuff for quite a few years now, we cant quite remember but it predated Judy's cancer. So telling me that it's her diet is not going to get you much traction. Statistically Judy can't have stage 4 cancer - she's a 4-sigma exception.

Now as for complimentary treatments - acupuncture, massage, and 'yodeling your way to a stress free life'. They all have a place and we might use complimentary treatments to palliate Judy's symptoms. Your grandma's chicken soup recipes are welcome - my attempts at a good soup from the internet stalled at several tries that only resulted in watery chicken casserole.

Alternative treatments though - this is the tough spot as they are an alternative to the proscribed medical treatment. Again you have to remember that I hold the medical profession in pretty high regard. Some of my best brothers are doctors.

In America there are 2 main protagonists in healthcare. I exclude Obama and won't post any political views here. I exclude doctors as well, they are just in the middle trying to skim a livelihood off the top. To my mind the players are the drug and insurance companies. Let me expand that for the 3 people still reading.

Drug companies are profit making entities. They like having you on expensive drugs, especially non-generic ones. They are motivated to find treatments for things that make you feel bad. Do they want to cure the common cold? Given the amount of money cold remedies make them maybe not. However the minute Pharmaceutical ABC gets a breakthrough they will milk it for all it's worth. They are business entities and can be relied on to act in their own best interest.

In Judy's case we pay approx. $10 per month for her hormonal treatment. Ergo they have no interest in Judy at this stage. Perhaps various trials that are underway may become of interest to us later on. My point is that they are not withholding a magic drug that will cure Judy, just so they can keep that $10 per month flowing.

The insurance companies dictate every action of the medical profession. They pay the doctors for what they do, so they control what the doctors do, directly.  Secondly America has this thing called litigation. If the doctors treating Judy don't provide a defensible course of treatment then I can sue them and take a lot of money away from them. They tend not to like this. Going further, if the insurance companies know about a miracle cure for Judy's condition and they don't provide it then they will be sued for hundreds of billions of dollars. Are insurance companies sweet, friendly, or helpful in any way? Nope, but they are profit making entities and as such are motivated by the steady supply of money and as such are comfortably predictable.

Either the drug companies will track down the active ingredients in 'natural' cures to make a killing (and save lives!) or the insurance companies will investigate whether there is credible evidence that might lead to lawsuits against them if they do not support the provision of that treatment.

This is my logical framework to process the options we face. No I don't blindly trust in companies, and there are examples of immoral behavior in companies! Imagine that, sin in the world!

I believe that if there is a cure in the world then this financial pressure will expose it, but


        My hope is built on nothing less
        Than Jesus' blood and righteousness;
        I dare not trust the sweetest frame,
        But wholly lean on Jesus' name.
        
        When darkness veils His lovely face,
        I rest on His unchanging grace;
        In every high and stormy gale
        My anchor holds within the veil.

        His oath, His covenant, and blood
        Support me in the whelming flood;
        When every earthly prop gives way,
        He then is all my Hope and Stay.
      
        When He shall come with trumpet sound,
        Oh, may I then in Him be found,
        Clothed in His righteousness alone,
        Faultless to stand before the throne!
        On Christ, the solid Rock, I stand;
        All other ground is sinking sand.


Monday, October 8, 2012

Gratitude


Judy here, so this will lack the humor that accompanies Ron's posts. I am feeling much better than the latter half of last week, with no idea why there are such dramatic changes from one day to the next. Rather than becoming overly analytic, we will gladly take the good days with the bad.


Today, when visiting the oncologist, we discovered my liver function tests had dropped to within normal range, something we are very grateful for and an answer to prayer since they had been steadily climbing.

We are constantly overwhelmed by the kindness of so many folk towards us. 

 This morning a friend brought breakfast - quiche and muffins - which she must have got up early to prepare since she delivered it before 7.30 am. We were able to enjoy it with some of the Canadian Snoeks who called us Saturday night and asked if we would like them to visit the next day. 
They arrived yesterday afternoon and this morning while we visited the oncologist - only away for 90 minutes in total - with the three of them they managed to clean the bathroom, polish off a huge pile of ironing, vacuum all of the dog's hair off the carpet downstairs, do some garden maintenance and place some tar on the roof where we still have a leak into the porch. There are probably other jobs I haven't noticed yet.


This past week we continued to have meals delivered and this afternoon another one came, which are prepared with such care. It is very touching to be the recipients of all this love and support. Thank you all so much; it is humbling. 

Friday, October 5, 2012

Emotion

A fair warning - today was an emotional day for both of us.

Judy has been very tired these last few days. yes it really has been a roller-coaster. We don't know the cause of her tiredness as yet, but will see the oncologist on Monday. The first option is the progression of the disease through her body. The other extreme (to our limited minds) is that she is still suffering through her post-op recovery. Naturally a combination of the 2 is true to an extent.

When we have such uncertainty it can be a real struggle. How much time do we have left together? Do we start working on the papers, or do we still have a lot of days to enjoy? Can family come now, soon, or is the next few months still going to be OK?

In the midst of  these up and downs the Lord makes His presence felt so strongly. I had a blessed time of encouragement from my brother last night, and blessed conversation with a brother in the Lord this morning. While walking the dog a neighbor with tears in his eyes offered prayers and support for us. I opened the mail  today and there were no bills only cards of love and encouragement. A young girl brought a meal that her class at a local Christian school had prepared for us. Meals are brought to us with little separate packages to add to the salad, a dessert, some breakfast treats.

So our emotions are up and down. Sometimes it's nice to talk about politics, often we think "Elections? Really? In what country will they be voting?"

Constant in all of this has been our comfort in the Lord and our delight in the way he does lift us up when we are feeling dismayed. From a young girls knock at the door, to the lyrics of a special song, to the thoughtful practical help of those far away, the Lord brings kindness and shows his compassion for us through all these many ways.

Judy normally would have sent cards out to all of you by now, expressing gratitude for all that you have done for us. She is frustrated that she has not been able to do so and now I think we are just overwhelmed - "how many thankful cards do we send that family for meals now? is  it 3 or 4"?

Cards in the mail can not express it. Know that you are the arms of the Lord around us.

Tuesday, October 2, 2012

and your credentials are?

Even 8 years ago I was very comfortable expressing my opinions (yes this is Ron not Judy!) quite freely and in a variety of settings. I recall discussing plans with Judy's medical team about the plan for surgery and then chemo. I interjected politely but firmly and made a useful contribution to their plans - actually I turned them around but I don't mean to boast. In spite of a good track record the reaction I get, no matter the weight of my input, seems to be "and what exactly are your credentials"?

"Well", I explain, "my brother is a doctor".

If that doesn't settle matters then I also trot out the heavy artillery - "Both my wife AND my daugther are nurses, further my son is doing pre-med". I find this quite sufficient to establish accreditation, sadly others are not as enlightened as I am. Dropping out of college 5 times is VERY enlightening.

This weeks visit to the oncologist was therefore satisfying in several ways;

1. After my call of the previous week he clearly felt he needed to review the way he communicated with us. We had a good sit down conference around the table and he presented various treatment studies relating to hormonal therapy and chemo treatment. We were able to discuss the various merits of the treatment options and make reference to the latest reviews and studies on the subject. All this was very helpful and we both feel very comfortable with what is being planned and how it is being managed.
2. There was a lot of good news as I've previously posted. Even just walking into the exam room Pezz could see that Judy was feeling much better. He told us he had been very concerned last week. He didnt revise the prognosis but was clearly very happy.
3. Being treated with the respect my ego deserves is very much appreciated as well. Pezz made copies of the reports he had studied and gave them to me to review as well. This is the way way things should be! Naturally given my academic history I can't follow a word of them, but he used lots of yellow highlighter, which I think means he understood it.

Overall there is no change in status or planning - we still have to wait and see the efficacy of the hormonal treatment, the way the liver progresses, and watch for evidence of further spread of the disease. IF we are able to go to NZ in Dec/Jan then we will have to take the flights in a few shorter segments and probably have a day or 2 in between.

Some people, as a closing note of defiance, have thought me insesntive in my comments about the visit of my son-in-law and his wife. Let me make 2 things clear. Firstly I AM insensitive, sorry if that is a problem for you. Secondly - don't you agree that if we won a $400,000,000 lottery tomorrow that it would still be rightly considered a consolation prize?

Finally - if you dont know me well enough - I'm happy. My wife is feeling better. When I'm happy I write nonsense that few people can decipher.