Funeral arrangements

Dad's funeral will be held on Friday the 30th, at 3pm at the First Presbyterian Church in Iowa City.  There will be a chance for those who would like to say something about him to speak at the reception to follow the service.  If you cannot make it, or do not feel that you can speak but want to say something, your words can be sent to Rev. Mark W. Martin at pastormwm@mchsi.com.  He will read the comments either during the service, or they will be read during the reception, depending on how many we get.  A memorial service will be held in Adelaide at a later date, but I would encourage friends and family in Australia to write something for the service here.
Memorials may be made to the Geoffrey McLennan Faculty Fellowship Fund at the University of Iowa Foundation. UI Foundation, PO Box 4550, iowa city 52244-4550

Free

This has turned out to be the worst day of my life.  Dad passed away this morning at about 2am.  He was not conscious and he was surrounded by his immediate family- me (bec), cam, sam, ben, declan and of course his wife of almost 40 years.  We held his hands, rubbed his foot, gave him lots of hugs and kisses, talk about memories of him in the many many hours leading up to his passing.  Dr Hohl was there with us to help guide us through this journey, and we will forever be grateful to him for his dedication to dad.  Dr Ross spend most of the day with us again as he had the day before.  He is an amazing friend.

The first part of the day is a bit fuzzy right now.  I apologize as I have not had sleep for a while.  But dad had a lot of visitors as usual.  Sorry, but I am too tired to name them right now, but of course Klein and Zabner were involved, which we are thankful for.

During dads final moments, we were all surrounding his bed.  Even declan woke up to say goodbye.  We played one of his favorate songs and told him how much we loved him and we said grandmas prayer for him.

He went peacefully and a few seconds after his passing all of us (not sure about declan) felt a rush of happiness.  So we know that he is happy.  Happy to be free of the pain and the suffering he has been going through, and happy to be free of the constraints put on his usually over-active life.  

Up until the end, and forever more, he is a great man.  The world is a better place for having him in it.  We are better people for having him in our lives.  In fact he shaped so many peoples lives, and I can honestly say he and mum were the biggest influences in shaping my life.  

Mum has done such an incredible job looking after dad.  Not just in the last few weeks, but the last few years.  And people, our jobs are not over yet, we are now here to help mum through this and our jobs are to look after mum.  I know you all have real jobs and other lives, but I am allowed to be a little dramatic a 3.48am on a day like this!

Please keep the comments coming on the blog.  we will continue to check it and it makes us so proud of dad to read all the things people say.  He was so amazing.  In fact, just today, a nurse (sorry, I didn't actually meet her to don't know her name) who was coming off of her shift came up to us and thanked us for having such am amazing father.  We are very fortunate.

 

Sleep well dearest Dad

Dad is now sleeping peacefully and probably will not wake up.  He never viewed his life with cancer as a battle.  But whatever you want to call what he has been through is now over and he can sleep peacefully until his last breath.

Monday July 26th

Bec here again.  Sorry for the delay in any posts, I hope we have not caused anyone to get anxious.  I am writing as dad has been planning to write all day and he is a bit too loopy to be able to handle it.
Last night was an interesting night.  Mum, me and dad all stayed in his room.  Dad has a lot of trouble sleeping and instead kinda of nodded in and out of cousciousness.  So I sat with him for most of the night and held his hand.  We had a few good chats and I feel very blessed to have spent that night with him.  His morphine has been increased slowly over the last day.  He is not as comfortable today as yesterday, but we are working on making him more comfortable.  It is a very difficult day for all of us, but most of all for dad.  At this stage, it is impossible to make him physically comfortable while mentally alert.
We have had lovely visitors today- Joel Klein, Alan Ross, Jo Zabner, David Stoltz, Mark Martin, Deanne and Donita from hospice.  And of course Dr Ray Hohl.  Sorry if I left anyone out, I am just saying the people I remember seeing today, but I have been in and out a little with other family members.  We even got to skype quickly early this morning with Shane and Tracy McLennan.
Dad has been blessed enough to be surrounded by those who love him dearly.  I guess I should also mention that mum, me, cam, declan, ben and sam are also here.  He is loved by many and that love shows.  Thankyou all
The visitors have been wonderful, but as a family we are really desperate for some alone time with dad.  We appreciate your consideration in this matter

good nite everyone

Bec here.  It is now 1.30am.  Dad is comfortable and very sleepy.  Mum and I are here in the room with him for the night.  He felt that we needed to be more active about posting photos on the blog and so I am attempting to post one that I just took of him with my phone!  Also I wanted to take this opportunity to thank everyone for the visits, the phone calls and the blog comments.  We read the comments to dad a few times a day.  Please don't take offense if you call and we do not pick up- of course we aren't screening calls, just sometimes we cannot answer.  So please keep calling, dad loves to hear from you all.  Good nite everyone, and may tomorrow be a lovely day for all

It is now 3.40pm Iowa time.  Have increased the dose and availability of IV morphine to help with pain.  We are doing this gradually so that affects can be closely monitored.  Bit sleepier.  Feeling more comfortable.
next dose increase might be in an hour or so, depending on need.  thanks

Its now 11.17 pm Iowa time.  Very comfortable.  Welcome visits today from Joseph Zabner, Joel Kline, Alan and Mary Beth Ross, Don and Jean Koch (who brought banana bread), Kim Baker, Kim Sprenger, Leslie Brautigam (who brought cookies), Janet Keating and Phyllis Pirotte (who brought a delicious dinner complete with entree, sides, and dessert - just terrific), Pat Hartley (who brought sustaining beverages), Milan Sonka (who brought beverages also).  Rebecca Zaharias brought food to the house - thanks.   Forgot to mention the visits yesterday from Jonathon and Adam Zabner.

Happily our family was together today and I was able to spend quality in person one-on-one time with our son-in-law Cameron Cooper, our son Ben, his wife Rebecca, and a phone conversation with our future daughter-in-law Kate Walker in the UK.  All very valuable interactions.  Skyped with my mum today.  Enjoyed the company of our children throughout the day and our grandson Declan was in good form and entertained us all.

Again so many emotional and meaningful messages of support delivered via the blog and also via email and by phone.  Chris reads them all to me and I'm grateful for such caring - a special call came from our dear friends Fereshteh and Reza from Iran who are currently in Madison, WI visiting their son Farshid to whom I also spoke.

Worked throughout the day with Alan Ross on an Invention Disclosure, talked with Joel Kline regarding the Eidomics paper.  Talked with Jacque Namati about the proofs of her paper soon to be published.  Messages and calls from my previous students, now in the Harvard system, Melissa Suter and Eman Namati - Jacque is also in that institutional system.

Currently, morphine dose will stay similar and will increase as needed tomorrow.

remember...don't forget

had a extreme extreme extreme shortness of breath last night just moving from the commode to the bed.  This manuveur took me an hour and a half with 4 nurses assisting.  It was barely tolerated.  Otherwise didn't sleep really apart from the last couple of hours leading up to about 8 o'clock in the morning.
Ray Hohl came over last night and we had a 2 hour medical consultation.  The result of that way that treating bad symptoms when they occur badly doesn't seem to produce adequate rescue.  So we now are going to shift and treat the symptoms before they require rescue.
So we will start that process today.  The immediate family are in favour of that as am I.  We talked to my mother and cousin Bev last night and they also understand the circumstances.
Without any treatment, my life expectancy is no more than about 10 days.
Will blog every couple of hours over the next day or two so that people can stay informed about the progress and about process.
The lung cancer paper seems to be now accepted with some minor revisions and Joel Klein will look after that.  Particularly like to thank Jeffrey Kern for helping with that expedited process.

Tumor is rapidly getting worse.  Breathing is now also much worse and controllable to some extent with morphine.  Didn't get out of bed today because of lack of energy.  First visitor was Mike Shasby with a freshly baked cherry pie (thanks Sandy).  Because I didn't sleep last night the nurses blocked the room from about 5.30 - 9 am and I slept quite well then.  Larry H broke the blockade but instantly assessed the situation and was kind enough to leave although still with the offer of coffee.

Then visits from Joseph Z, Jeff W and our famous concert piano playing pulmonary fellow.  I think I'll requisition a piano for the hospital room so that he can come and give a concert here.  I'm sure the Epic system would allow that.

I had very quality time with our daughter Rebecca - just one-on-one - for a little over an hour today and we made a couple of videos about that.  Had quality time - one-on-one - with our son Sam and also made a short video with him.  Yet to see our son-in-law Cameron one-on-one.  Chris and I hope to make a short video this evening.

Alan and Mary Beth Ross came visiting this afternoon and their visit was very welcome as was the visit from David Stoltz this evening.  Keith Brautigam and his son Nolan also came to visit.

Because of airline delays, Ray Hohl's visit has now been changed from 5 pm to 10 pm and he should be getting here in the next few minutes.  I think that that meeting will be attended by Rebecca, Chris and myself. If we need Sam (who has gone to bed to catch up with sleep) he can be over here in a few minutes and Ben can get here quickly also.

We talked to my mum on the phone today.  We talked with nephew Shane McLennan and his family via skype and also with niece Rachel and Rob.  So those people in Adelaide are aware of the current very serious nature of the tumor issues.  While the skyping was going on, Chris talked to my brother Bob who indicated he would also skype a bit later but obviously experienced difficulties in doing so.

Needed a Foley catheter today for urinary retention induced by the morphine.

The day nursing staff here are just fantastic.  We just spent some time with the night nursing staff who did an extremely good job last night and we're all expecting the same tonight.

Today, with our whole family together - with the exception of Sam's fiance Kate who is still in London - we celebrated Ben's 38th birthday with a little party in my hospital room.  We had cake and ice cream and the Shasby cherry pie and ice cream and took lots of photos of each other.  Happy Birthday Ben.

In my hospital room is a big bunch of eucalyptus which allows me to enjoy the fragrance of home.

Ray Hohl visited and was here for a couple of hours.  We discussed various alternatives and feel that we have to increase pain control and control of the shortness of breath so that I am more comfortable.  The end process here has been fairly rapid, more rapid than perhaps we had expected.

We will communicate our plans directly with my mum shortly and let her know the circumstances.  Hopefully she can get some intellectual and spiritual comfort from the family and friends she has in Adelaide as well as from her church.

The dying process obviously continues.  Nobody is happy about it but there are no alternatives.  We will keep people posted on the blog through the next 2-3 days and let them know what's happening.

Special thanks to Joseph Stoltz for the art work depicting my presentation and that of his father at the University of Iowa Mini Medical School.  Great work Joseph.  Special messages received too from Amanda, Andrew, Michael, Caitlin, and Becka.  Thanks for thinking of me.

Last night was uncomfortable and couldn't breathe.  Had to breathe sitting up.  Took nebulizer for partial relief and another nebulizer - still couldn't breathe.  Ray Hohl came at 6 am - we are going to continue the current course of action knowing that there's not much else we can do and that the current course is really the only one, apart from increase in the morphine dose.  Had a small bit of ice cream.  Breathing slowly got better through the morning so I was able to sleep.  Then had a lot of spontaneous visitors - Tom G, Joseph Z, Joel K, Eric H, Carl T, Sue H, Kim B, Kim G, Kim S, Janet K, Maged A, Alyssa N, Jerry M, Pat, Mark A, Teri S, Ben McL, Rebecca S, Sandy and Mike S, Alan R, and Jeff W came as the penultimate last visitor.

Coffee was provided by Larry H - it seems that the Java House has adopted me and is making any coffee orders for me at no cost.

Rebecca, Cameron and Declan arrived from Kansas City and Cameron was thoughtful enough to look after Declan while Rebecca visited me in my hospital room.

Sam arrived from London and he was able to also visit for about 30 minutes before taking his mother for her first cooked meal in 4-5 days.

Talked to nephews David and Shane from Adelaide per phone.  Will try to skype with them tomorrow.  Talked to mum on the phone and had phone and skype messages from Rachel, and emails from Raine, Kate and Julie R.  All very meaningful and appreciated.

Special thanks too to the children and staff from The Hills Christian Community School, Verdun, South Australia to whom I gave a talk when I visited their school in March this year.  They sent me a great packet of illustrations and ideas for inventions which was the theme of my talk to them - great reading.

The respiratory therapist spent many hours counting the bubbles to make sure the airflow was correct for Epic !!

Breathing still very short but able to lay 3/4 down and should be able to sleep.  Ray Hohl just in Chicago and will be back here tomorrow and I think decisions have to be made about getting a lot better symptom control.

NOTE FROM BEC
Hey everyone, dad is handling everything in his usual amazing way, as is mum.  He really loves all the visitors, phone calls and comments, so I encourage you all to keep up the brilliant work, and I thankyou for it.

Hospital transportation was superb.  I was so breathless that I could move any part of my body for fear of getting more breathless which I didn't think was possible.  The Fire Brigade and Ambulance Service made sure that I didn't move a muscle.  They took me from my bed at home upstairs to the hospital bed here .. it was remarkable.

One problem with controlling the breathing is that I have got no reserves at all so it was felt that if I had morphine I might lose my respiratory drive perhaps altogether.  For that reason, in hospital, a trial of morphine was considered very important.

So, surrounded by my medical colleagues - Ray H, Joseph Z, Joel K and Alan R, and Chris - the morphine was given in a low dose and I started to have a very satisfactory response to it.  My breathing became a lot more tolerable and a lot of the discomfort of breathing mostly disappeared.

Joseph Z slept in the same room as me until midnight and Joel K stayed with me until 8 am when he thought it was time to go to work.  Chris went home as an obligatory step so that she could some much needed independent rest.

These successes mean I can sit and talk with people and can lay down very comfortably to sleep - most of which seem small but are very gratifying to me.  I can't really otherwise exercise since I get immediately short of breath and if you want to know the feeling run half a mile or climb three flights of stairs.  So, all the last couple of days I've been in bed.

As my left lung gets smaller from encroaching tumor then just looking at the progression on the CT scan since two weeks ago, it would appear that I may have not much left lung at all in another couple of weeks.

Because I'm in hospital I've had many impromtu visits from colleagues.  These were all very welcome ..
Kim B, Amy N, Eric H, Milan S, Alicia G (who is actually Faculty on the floor here), Joseph Z, Joel K, David S, Joe R, Gary C, Chin Long Lin, Kineret Z, Ben McL, Rebecca S, Punam S - do forgive if your name isn't mentioned.

I have moved from the Medical Oncology Ward to an area on Level 7.  Ray Hohl remains physician in charge, ably assisted by my many colleagues and friends, some of whom are engineers !!!  I should say that the move to Level 7 was to a larger room which accommodates my many welcome visitors and also in consideration of the other patients in the Medical Oncology Ward.

Great messages of support received from Larry C, Matt and Chicky, Julie and Chris R, Kim B, Lakshmi D, Sue H, Tracie McL.

Now, we're not sure of the immediate future.  Right now comfort is good but clearly if I loose the left lung quickly over the next few days comfort won't be so good.

We're trying to help our children balance this uncertainty against their need to travel from their very busy jobs - this is not an easy task.  We're guided as best we can by our medical team, some of which I think thought I might not recover my breathing as well as I have on this occasion.

As I have said for the last week or two, I've got no lung reserves at all so any further stress on the lung will not be tolerated really at all.

Rough day.  Spent all day in bed.  Trouble breathing.  Cough treated with codeine.  Worsening.  Breathing didn't get better through the day.  Going to spend the night in hospital to try and get some relief.  Haven't eaten.  Had a liter of fluid this morning.  Lots of visitors today .. Joel K, Cathy W, Joseph and Kineret Z, Pat H, Joseph and Jennifer R, Kevin D and Mark M.  Skyped with Sam and Kate in London and then with Rebecca, Cameron and Declan in Kansas City.  Spoke with Ben also.  Talked with mum on the phone.

Two mets quite painful. One in the right hip and the other in the right lower chest.

This represents a significant decline from yesterday.

Haven't coughed up any more blood.

Just waiting for hospital transport.  Hopefully will feel better soon.

poor sleep last night due to coughing.  Settled in the morning with some coedeine.  Talked with Ray Hohl, had a CT scan which showed a clean airway on the left but less lung on the left to breathe with so this is progressing.  Eric Hoffman visited me in hospital.  Had some blood tests, got home about 5 pm.  Had some fettucini alfredo for dinner.  That was good.

The NIH and the NCI skyped with me from the Awards Ceremony in Washington DC and then we talked on the telephone - it was really nice and a nice gesture from them.  I will miss them all.  Larry Clarke got a lifetime achievement award which is very well deserved.

Talked to niece Rachel on skype.  Talked to mum via telephone.

Alan Ross came round and made a video interview with me about medicine, bronchoscopy, and life in general.  This was an hour.

The upstairs lifters (Sue, Bill and Victor) came and carried me up to bed - this was very helpful of course.

Keith and Leslie Brautigam came over for a quick visit and brought root beer and vanilla ice cream to make root beer floats.

Went to bed and started coughing up bright red blood.  Now seeing what that might mean.

Good night last night.  Watched the movie Shane in the wee small hours, it was very comfortable.  Hospice nurse gave a liter of IV fluid this morning.  Cam, Bec and Declan left to go back to Kansas City.

Worked on the Eidomics paper, now sent to Joel Kline for his comments.  The Respiratory Therapy Bronchoscopy Lab offered to do helpful things and indeed our BBQ had fallen off the deck and onto the lawn so they came around and restored that to its rightful place.  It was nice to see Sue Hankin, Victor and Toni.  Sue brought home made zucchini bread that has now been partially consumed and was very welcome.  Following their departure, Larry Hunsicker came around and we had a delightful conversation, as always, ranging over different topics.  He brought an iced mocca from the Java House and this was consumed later in the day.  He also brought strawberries and strawberry ice cream.  Larry is a great thinker and a very thoughtful person and I enjoy his company.  We were expecting Alan Ross but he has been detained at work.

Had 2 good meals today - both mongolian beef - and the spicing was just right.  Also had good quantities of Culver's frozen custard so all that felt pretty good.  Back pain is well controlled but the tablets might be making me a little more tired than I need to be.  Nevertheless its always a balance between pain and tiredness.

Sue Hankin offered to have her and her husband come back to lift me up the stairs tonight and I was very happy to accept so they came and Toni and her son also came to assist.

Talked with mum on the phone since she has lost her blog site connection but we couldn't re-establish it over the telephone.  This a shame really since she has missed out on blogs since last Saturday.

I hope to feel less tired tomorrow and will try to catch up with other people at work including Eric Hoffman.  Jessica and Jered Sieren delivered their daughter today, they named her Ava and she looks a very pretty baby.

Eman Namati sent these beautiful words on Sunday which I thought I would copy for the blog to share with others ..

"O Son of Spirit!  My first counsel is this:  Possess a pure, kindly and radiant heart, that thine may be a sovereignty ancient, imperishable and everlasting."

remember - don't forget

what a pleasant night - slept about half of it, and the rest i spent thinking - amazingly content and comfortable.

sunday am picked up ben kilsby from his hotel, went to java house - saw old friends there - havent been there for some weeks - it was very good - and i liked the cafe mocha - yea -taste is back.
jeff wilson called on phone there also.

we have a great plan now for global eidomics - i am very happy about this as it will be transformative for health care.

award came yesterday for me from the national institutes of health -nice.  i was meant to get it in washington, but couldnt - i really liked the group we worked with over the last several years and will always be indebted to them.

milan sonka came by  - he has been in europe for 3 weeks - had a brief chat.  funny no back pain last night, but a fair bit today.  cant sleep in the hospital bed on the ground level, so i get people to help carry me up stairs - milan did so tonight. so last 3 nights visitor from minnesota (farnia), visitor from adelaide (kilsby) and milan is originally czech republic.

will look for others to do the carry through the week.

gary hunninghake came by for a visit - we had a great chat about some new therapy for emphysema and other stuff.

getting some muscle loss from the dexamethasone, and not eating much except ice cream and some fruit (and fruit pies).

bev hanson called per phone, as did mum.  alan ross called, he will come over tomorrow night.  talked with eman and jacqui per phone in boston - they are ding well as expected and a couple more papers are coming.  will talk to mel suter tomorrow.

i get very tired, and still breathless with exertion, but still making the most of time i think

bec and cam and declan still here, they leave back to kansas city on the morning.  very nice to have them here.  already slept for a couple of hours tonight, back pain a bit annoying.

i continue to be over whelmed by the love and humanity shown to chris and myself by all of you.  its very humbling, but eases the pain of today and the road ahead.

will post the back log of photos tomorrow.  Saturday night group at our house in photo.

Good night last night. Up this morning. Cam and bec were here that was nice, with decline. Bec went to pick up Ben Kilsby from Adelaide, from the hotel vetro. He. Went for a quick look at the mall and then we met for a business lunch at the olive garden. The olive garden was terribly slow for seating and service. We resolved a number of us sues that will help take eidomics forward as a global project. So this was very productive. I slept in the afternoon while Chris, bec and cam made roast pork and baked Atlantic salmon for dinner. Joel and Cathy kline came for dinner. They brought salads and dessert and wine plus a jeroboam of champagne. Ben kilsby had already purchased an apple pie from the store in Kalona. Tony fanchi also came for dinner, Chris wyman did not. The company and progress made with regard to eidomics was quite satisfying so this was well worth the effort.

The guests were able to carry me upstairs on my wheelchAir as an added bonus.

Jeff Palmer came over and had engraved The Anarrosi Golf Cup To read "2010 Geoffrey McLennan - for making time". This was a golf tournament I started for my rehabilitation group 4 years ago. Jeff thinks he can expand it and will invite Bob Furhman and Andy Ashby to play. I've got nothing but the warmest admiration for his professional and personal growth over the 6 years that he has kept me mobile. (see photo)

Medically stable but tired. Looking forwArd to a good nights sleep. I have downloaded the movie Shane to our iPad in case there is a break in the sleep.

I've been in touch with Ann angel at flinders university in Adelaide and Ben will catch up with her next week when he returns.

Thanks for all you blog watchers for lending your support and eTching over us.

Good day today.
Increased dexamethasone so not flat.
Had liter of fluid iv in am
Chris picked up Ben kilsby from holopoint Adelaide in the am. Rebecca shaw came over to watch me in the am. That was helpful.

Talked with mum per phone.

Ben toured with rich linebach their facilities in engineering.
Then we met in the blue room at work for 3 hours going over eidomic strategies - meeting was with Joel kLine, Chris wyman, Tony frachi, Chris and myself.
A productive meeting with defined end point for action.

Dave and steff farina drove form minneapolis just to see us- arrived at about 6 pm

Bob fuhrman dropped in after his teaching at the dental school.

So we all went to mondos for dinner - this was a great treat and a lot of fun- so we really appreciate the time everybody took- thanks (see photo)

Dave farina was able to lift me up the stairs with bob and Ben k.

Bec and cam and decline arrived at around 8 to stay the weekend.

So a great day- thanks all.

Very flat day- not bad this am, but flat since.
Arranged for hospital bed on main level of house.
Didn't eat much. Rebecca shaw came to visit.

Don and Jean Koch visited and brought sweet corn.

Pain in upper belly from mets.

You will all be pleased to know that my mother can now look at the blog.  Not being computer literature she has a Macintosh laptop set up so that we can skype with her and all she needs to do is press one button but it was only yesterday that someone showed her how simple it was to log onto the blog and follow progress - Duncan did that on one of his visits to her and she's been reading the blog ever since.  So, "hello Mum".  Mum also write a very nice letter to us which we received today.  A lot of the time when we are troubled by the future, we look back at the past because the past is known and comforting.  I will reiterate to Mum and others that we had a terrific childhood surrounded by loving parents and that served as the foundations for later successes.  So, from my point of view, I don't have a single complaint about my developing years.  Lots of memories.  I remember Mum coming in at night and having us say a little prayer.  She often said it with us.  This must have been when I was still in early primary school I guess.  The prayer is as follows ..

Now I lay me down to sleep, I pray the Lord my soul to keep.
If I should die before I wake, I pray the Lord my soul to take.

This is a simple memory but one which has lasted over the years.  I'm not sure it was exactly comforting when I was 6 years old but nevertheless there's a simple message.  Anyway, Mum did that every night - just one of the many things she contributed to our upbringing.  So, thanks Mum, we're very proud of you for all the things you've done and continue to do.

Received a surprise parcel in the mail from Ed Jones and Elizabeth Hardebeck who are grandparents to our son-in-law Cameron Cooper.  Liz wrote a very nice letter indicating their continuing support for our predicament and we're very grateful to hear from them.  There was also a package which contained a jar of homemade plum jam.  We haven't opened this yet but will shortly.  Only in the midwest could this happen - just quite remarkable.  I might post a photo of the plum jam.  Ed and Liz are avid readers of the blog as well - there seems an amazing number of people who read the blog regularly that have not logged in as official members.  That seems perfectly ok.

An interesting day.  Slept well last night.  Got into the chemotherapy day center for blood transfusion at around 11 am.  This all went very smoothly and the staff were fantastic.  Brenda Duello came to visit and explained her fundraising process for the named pulmonary fellowship and possible chair in my honor and we had a good discussion about some good potential serious donors.  So far the response has been apparently very good initially.  Kim Baker visited and bought some more Lebanese food which we have not enjoyed yet.  Joel Kline appeared and bought coffee which actually tasted quite good to me for the first time in several weeks.  Eric Hoffman came along also with coffee which I gave back to him to have and for about 30 minutes there was a 3-way conversation with Kline, Hoffman and myself.  Then Jessica Sieren came over for a social visit - she is due to deliver her first child in a week.  Her mum and dad will be here in August from Adelaide.  Julia Klesney-Tait came with some delicious smelling banana bread that she had just made - most banana bread that we've had has been kind of solid but she explained how she makes it to be quite fluffy - a little later in the day we had banana bread and ice cream which was a terrific and much appreciated combination.  I asked Julia to mention "blackberry pie" to Dwight Look as he had indicated he knew a great source of them and I was just feeling like blackberry pie and ice cream as well.  Julia did so and at around 6 pm Dwight turned up with 2 pies, one blackberry and the other cherry.  We have had pie now with ice cream as well so eating pretty well.

After the transfusions we went over to the lab and met with Ryan, Alyssa and Maged.  They are all doing just terrific work and now primarily under the supervision of David Stoltz.  Maged had made some soup for us which we took home with us.  This was very generous of him and we thank him very much.

Met with Tony Fanchi - he's almost completed his revision of the lung cancer paper figures and should have that finished today so that I can insert them into the text.  Met with Amanda Smith who is doing summer rotations before she starts her MD PhD studies - she's going to revise some of the figures in the paper as well as that, she has provided a bit more information about how she acquired the images.  She will also give her paper related videos to Tony so we can post them for the journal editor to review.

Talked with Kim Glynn later in the day to offer support for some recent and unexpected family trauma.  Met with Anita Kafer and had quite a long conversation with her and I think it was good to do that with such an old work colleague.  Anita used to be the division co-ordinator in the Pulmonary Division but hasn't done that job for probably 15 years.

Felt pretty good leaving the institution which we left at around 4 pm and decided to have Thai take out for dinner.  So we did that.  It wasn't very spicy and was nicely freshly cooked but shortly after having that I developed more shortness of breath and thats possibly now related to the spices.  So we've found that now with spicy Indian, Chinese and now Thai food so I guess we might be slow learners but not having any more of any of that.  Ice cream and pie or ice cream and banana break seems to go an awful long way.

Alan and Mary Beth Ross came around after work and helped us eat some of the Thai food as well as some of the pie but my breathlessness was worse so they stayed a little longer to see if there was anymore we could do.

For the first time I couldn't get up the stairs to the upper bedroom where we sleep so this is now around 10.30 and I got to the top of the stairs but then breathlessness stopped me and I had to lay down on the floor.  Chris called Alan Ross by phone back to help and we called Jeff Wilson to come and see if they could get me from the floor into bed.  (see photo of the heavy lifters).
They did this quite well and, at rest, my breathing has now settled down although I still get this exertional shortness of breath which is quite debilitating.  We're very grateful that Jeff Wilson and Alan Ross came quickly in response to our needs and we were very humbled by their care in what was rather late at night.

Still coughing brown chunky material which occurs from time to time and I think that actually is coming from the non-functional right lung and may reflect a bit of tumor necrosis or that sort of thing.  In any event using a nebulizer the material, which is quite sticky, becomes quite liquid and is easily coughed out.

What an interesting day.  We did a lot.  We may need to look at putting a hospital bed on our ground level so that I don't have to get up the stairs but we'll see if the breathing problem is cleared by tomorrow in which case we won't be eating any more spices.

After the trauma of the late evening, my breathing is now very good and I think we'll end up having a good night's sleep.

Happy Birthday Bob.

good night sleep last night
pain controlled
breathing ok - lets hope same applies tonight.

had blood today ready for transfusion tomorrow.

hospice nurse brought more fresh peaches.

meetings this afternoon regarding finishing the lung cancer eidomics paper - joel kline and tony franchi and chris.

tom gross called and came for visit at around 6.00 pm - i really enjoy his company -so it was a very therapeutic visit - thanks Tom.  Tom brought Viennese chocolate fresh from Europe. (see photo)

still very breathless with exertion - so i hope the blood transfusion helps with that.

visitor from Adelaide coming Friday

no breathing troubles last night so slept well, although back pain woke me at times.  Tumor has grown through the ribs on the right back - getting more painful.  bit annoying really.
woke this am feeling really good - then slept for another hour or two.  Its nice to feel good.

bec and cam and declan left today back to kansas city - they were very helpful over the weekend.

jeff palmer readjusted my leg, so now really quite good for walking.  main trouble is i get really puffed out after a few paces, even with oxygen.  at least now i can exercise a bit more.

hospice nurse came in am - good visit - she brought fresh Missouri peaches - delicious

Ray Hohl - my attending physician came at around 6.00 pm - a very thoughtful discussion - we are planning a blood transfusion wednesday and starting a new drug for the back pain (not narcotic) - this seems a sound way forward.

Alan Ross -my patient advocate I guess came by at around 8.30 pm - we chatted.

a brief mention of some of the food offerings from friends (my taste is still off).  This isn't meant to be a competition of any sort but just say "thanks" - its particularly difficult with food when my taste buds are all messed up.  Food thats too spicy seems to cause some coughing and I need a nebulizer to relieve that. Regular food, I can't eat.  So .. we've gone off mexican and chinese take-out now since they vary so much.  Sweet or salty things seem best but even that varies.  Safest seems ice cream with some fruit.  Anyway, just thought I would mention that.

- cheese cake from Dawn Flaherty - excellent
- cherry pie from the Shasbys - wonderful with ice cream.
- tabouli from Rami and Kim Baker - this was really fantastic - great texture and taste, bit bigger pieces than I have had in resturants - thanks Rami's mum who advised from Lebanon.

- fresh baked bread and blue berry jam from Margie across the road.
- blue berry muffins and raisin bran muffins from amy and scott nibaur - both great but blueberry has to rule.
- and ice cream from Andy Ashby

The photo is me going around one of my lawn tractor paths yesterday.

Chris continues to put in amazing support.

Welcome to Murray McLennan, the senior McLennan now in Adelaide apart from my Mum.  Murray works hard to keep the Clan McLennan in South Australia together so its nice to see he has joined the blog.

Slept reasonable well last night, and again very well this am. Thank goodness.  Muco-myst working well in mucus.  Seem more short of breath - still fatigued.  Cam mowed the lawn, and I rode around a fair bit on the mower to look at our refinished decking etc.  It was fun.
Sam and Kate skyped in from London.  Skyped with mum.  Donna and Dave McLennan tried to skype from Adelaide.

Comfortable afternoon, almost no cough.  Gary and Margie Hunninghake visited in the afternoon - it was great to see them also.
Just when we thought I would post a photo of me on my lawn tractor - Andy Ashby turned up with 3 tubs of ice cream -what a great surprise and very welcome. We chatted for quite a time - but that gets photo honors - if such a thing exists.
Alan Ross called later in the day to see if we needed anything.

Mario from Adelaide sent a welcome comment - thanks Mario (and Lorraine)

sleepness night as not want to cough any more of the thick mucus - but did so again at around 6.00 am.  now on muco-myst which has loosened the mucus up - apparently all this still effects of radiotherapy, and should be a lot better in a couple of days.  fatigued plus also but cam, bec and declan here for the weekend (see photo), so up and about within limits.
amy and scott nibaur dropped over fresh muffins - and home made lasagne - still being judged.
esophagitis marginally better.
hospice visited - i had more IV fluids today also.

talked with granny, sam per phone.  alan ross called mid afternoon.
need to add photos tomorrow.

Slept a little better last night.  This morning was sleepy.  Got up around 1 pm.  Ben and Rebecca came around in the afternoon as did Alicia G.(see photo)  Mostly chatted about work with Alicia.  She brought some lovely stuff from the Java House.  Joseph Z came late afternoon and then Alan R came about 8 pm.  Skyped with my mum and cousin Bev.  Skyped with Rebecca, Cameron and Declan - they will be here tomorrow for the weekend.  I think I'm more short of breath than I was.
Almost choked coughing up thick mucus tonight- very troubling. Increase in esopahgeal mucusitis from xray therapy

Alan Ross came around last night and helped settle me for sleep.  He was with us for 4 hours and I slept much more relaxed and in patches.  This was better.  Had the leg re-fitted this morning and now its a really nice fit thanks to the hard work of Jeffrey Palmer.  Have worn the leg all day and it seems good.  Had a fair bit of back pain this morning.  This afternoon we had visits from John and Janet Tiffany (who brought with them a very exotic salad), Joel Kline, Amy and Scott Nibaur (see photo).  These were all good visits and very enjoyable.   Very tired and still feeling the effects of radiation.  Some difficulty swallowing.  Developed a bad coughing fit at about 8.30 pm with breathlessness.  This has now settled.  Peter Robinson just called from Adelaide.  He is a colleague Pulmonary Physician and an old friend.  It was nice to hear from him.  Finding food seems to be an elusive goal.  Talked with my mother and our children today.  Photos tomorrow.

bad night, but slept in 2 or 3 patches of 40 mins or so - so improving as dexamethasone reduces.  worked on lung cancer paper for 2 hours through the night.  ready to go to other authors - so sent out this am to  couple.  flat this am, so filled up on oral fluids.  maybe IV tomorrow for fluids.

had last radiotherapy today - thats good - last therapy administered by a long standing friend (Barb - thanks).

leg refitted, but stump keeps changing size, so difficult to get the fit.  jeff palmer is trying very hard.

bit short of breath laying downflat - another issue with sleeping.

Kalpaj Parekh (Kal) - lung transplant and chest surgery at Iowa - came to visit me in the radiation oncology waiting room - that was very pleasant and thoughtful.

Went to see my clinical trials group briefly - kaylene, andrea and kim.

kim baker is finding different foods for us to try.

quite a busy day, so taking it easy tonight, although expecting skype from Bec and Cam - just then, and later from Granny.  Sam called per phone and had a good chat.

No sleep last night!  Developed pain in esophagus last night from the xray therapy.  Relief this am.   No sign of major airway obstruction, so that is good.   Prosthetic leg back in for a little remodelling  - Chris took it in this am.
Early afternoon some more radiotherapy - then final one Wednesday.  Hungry, but hard to eat since tastes are off and esophagus hurts a bit to swallow.
By the way when I say we had chinese take-out - i can eat about 10% of the amounts before having enough - so lots of wasteage.
Thanks for all the emails again today - Becka Z,  Lyn J, Carol and Bill D - all locals in Iowa City and great friends.  Very expressive.  Also from Lya de Ryk and Simon Langsford and Jill from Adelaide,  Duncan Treloar from Queeensland, and Kim B.  All very heartfelt messages, received with humble thanks.  Just received email from Lloyd and Angie Steward - my old golfing buddy from Adelaide - they are on a caravan trip around Australia.  The memories Lloyd and Angie are in the bag and cant be taken - and what pleasant memories they are - well worth the trip of life - so thanks a lot, i remain greatly indebted to you both.  Keep well.

Had radiotherapy, no problems, taking stuff for esophagus - helps.  Kim Baker brought home-made tabouli from Rami - what a treat.  Had coffee in the hospital after radiotherapy, with Alan Ross and Reinhard Beichel.

Merran McLennan (sister-in-law in Adelaide) called per phone and we had a good talk with her.  This was nice.  Talked with granny per phone, cousin Bev called, but we missed it.

Talking with Bec and Sam daily as well.  Ben is coming Friday this week.

Still trouble sleeping, but steroid related, so might get better as dose goes down.

Eating - well badly - had Mexican, but didn't taste great, then Chinese, still didn't taste great.  So will keep looking.  Ice cream is good.

Talked with Ray Hohl (medical oncologist) today per phone - will see him later this week.

By the way, if you go to comments just below the blog u can leave a comment.

Today is the day after July 4th.  Didn't sleep last night.  Likely the effects of the dexamethasone.  Had no lung symptoms at all apart from a bit of back pain and a bit of a cough .. so quite comfortable.  It seemed a shame to waste a night when I was feeling so good.

Slept a bit in the early morning after 9 am.

Andy Ashby came to visit at midday and we had a good and long discussion.  He's doing very well since his graduation from the pulmonary fellowship and I like him a lot.  His golf game is still not that good so I was compelled, at his request, to give him yet another lesson.  This time in putting (this coming from me - the world's worst putter !!!).  Anyway, see photo below.

Have continued the rest of the day without much in the way of lung symptoms apart from tiredness and very breathless with exertion.

After Ashby's visit we went to lunch at Mondos with Alan and Mary Beth Ross and their son Geoffrey who is visiting from college for the summer.  We had delightful conversation till around 3.30 pm.  It was interesting to hear Geoffrey's progress which seems to be outstanding, I was very impressed with his thought processes and directions.

After lunch came home for a nap, then had heartfelt and humbling emails from Don Hemer in Adelaide, Mark Rogan in Ireland and Raine Walker in the UK.

Later in the day Andrew Treloar (an old friend from Adelaide) called via phone and then we skyped with him for an hour or so.  It was helpful to hear his comments and we had a very useful discussion and we greatly appreciated the time he took out of a busy day.

We skyped a few times with Bec, Cam and Declan through the day, talked with Granny twice and Sam called from London on his way home from work.  Ben also called and will be visiting us through the week.

So, in summary, health characterized by tiredness, breathing very short with exertion, some posterior chest pain.  Eating well.  We had take-out chinese for dinner and some more of Shasby's pie which I understand is made from cherries from Mike Welsh's property.

More radiotherapy for the next 2 days.  Most of these effects seem to be made a lot better by the moderate doses of dexamethasone and it will be interesting to see what happens once the dose is reduced at the end of radiotherapy.

Hope I can sleep tonight.

Happy 4th.  Breathing and coughing last night were very troublesome - presumably radiotherapy swelling of the target.  i am not sure when swelling is meant to occur - different people say different things.  up most of the night with chris, and felt very bad.  finally got a little more comfortable at around 2.30 am after more dexamethasone - but not comfortable enough to lie down much.  talked briefly with ray hohl at around mid night - helpful.  didnt sleep much at all though - annoying repetitive non-productive cough, and short of breath.  radiation again today.
break from radiotherapy tomorrow - then 2 more days.

reasonable day today, some coughing, breathing stable.  mostly rested up.

Scott Ferguson visited from Madison Wisconsin for a couple of hours and we had a great discussion, mostly work stuff. Scott is doing very well with some new directions in Intervention Bronchoscopy, so I am very happy.  We discussed him taking over the development of the new bronchosopy society I started developing a year or so, and he will do that. This will allow liason between industry and the thought leaders in the clinical field of interventional work - and should be very useful for all.

so a quiet 4th.  windy outside and threatening rain most of the day.

skyped with bec and cam in kansas city a few times - and watched on skype as they let of fireworks tonight in kansas city - in the rain.  declan didnt seem to exactly know what was happening.

talked with sam per phone in london yesterday.   talked with mum per phone twice today also.
really had a rest day after last night - feel better tonight - now 10.30 pm.

cheers

now 11.30 pm - cough persisting, non-productive; but also short of breath.  maybe swelling in the irradiated site - still on dexamethasone.  doesn't feel too good at all.  hope it settles so i can sleep.

Last post for Saturday.  Cough came back around 5.00 pm - really annoying - trying to settle it down.  Sandy and Mike Shasby bought around some really nice chicken and an even nicer home made mixed berry pie - this was outstanding to eat , so thanks a lot.
Talked to Mum twice today, and skyped with Bec and Cam a few times.  Caught up on some letters in reply to people I havent seen for some time - who have written me very humbling and meaningful notes.
Got a really nice text message from Robert Barry (CEO Uptake Medical) that bought tears to my eyes - thanks Bob.
Will try to get a good sleep tonight - more radiotherapy in the morning.

and here is our pond frog!

here is mowing the lawn

here is current CT slice - on your left is my right side filled with large masses of tumor.  Air is black on CT so that large mass of tumor should be my right lung which has disappeared.  some tumor coming back through the chest wall on that side.
on your right is my left lung looking black - so that is good, although it is compressed from all the tumor from the other side pressing across.
none of this has changed much in 4 weeks (although a little worse)
what has changed is the little bit of tunor behind the main breathing tube in the center (kinda a half moon shaped black airway, with tumor underneath it). This has grown a lot in 4 weeks, and is partially blocking the left lung airway - might be responsible for some of my symptoms, but we do not want it to get worse - this is a rapid grower - so zapping that with targetted xrays to prevent future preoblems and help alleviate current ones hopefully.

Saturday morning went had radiotherapy, no problem.  Took a screen shot of current CT scan.  Radiotherapy people were great.
Came home and mowed half the lawn - sprayed some weeds with round-up.  Found our pond frog.  Will finish mowing tomorrow.  Went to lunch with Alan and Mary-Beth Ross, who called by phone just at the right time.  Tool them to the Exotic India for a buffet.  It was good.

Home again have a bit of a rest.

this post is for friday, but it may show as saturday, since it is after midnight friday.
great day friday, had first course of radiotherapy at 11.30 am - very professional staff.
before that at home i was completely comfortable in bed - just relaxed and amazingly calm - happens rarely to be that comfortable.  Hospice nurse came, so filled her in on progress.

didnt take in my new leg into radiotherapy since there are computers in the knee and ankle which i didnt want to affect by stray xays - he staff thought it might be just fine, but why take the chance.  chris stayed in the waiting room, but i think saturday she can come and watch the procedure.

after radiotherapy course we went and had a capaccino at the java house just above - first coffee for 8 weeks, and it tasted like coffee - very impressed, i drank about half.

then went to the imaging institute offices - saw kim glyn there and got a lot of work done, including IGERT reviews, etc.  will do conflict of interest forms next tuesday.  caught up with Allysa, Ryan and Majed (students) in he break room - this was really really nice for me to just chat with them.  they all have great futures, and their work is wonderful and important.

amanda came along from her summer internship, preparing for her MD/PhD - she seems to be thriving; and has finished her additions to the lung cancer paper - impressive i think.

Edwin van Beek (radiologist) came in to see me - he is now based in Scotland - but back in Iowa for  few days - we had a meaningful discussion, and then emotionally parted company - i likely will not see him again.

Still in the imaging institute offices - chris and kim glyn are working on a lot of stuff - Dwight Look came by to discuss COPD research - i might have talked too much, but he was very attentive, and i thought the interaction was very positive.  He might turn up with a blackberry (pie).

Left the offices around 4.00 pm - felt good - not many people around as 4th july weekend.  Ran into Lashkmi - asked her about Indian food take-out - she suggested Exotic India.

We decided to eat a late lunch at the Olive Garden - me on crutches.  Had their spicy soup (potato and sausage - tasted fine, plus some salad.  we have done this  before over the years.  they have good salad dressing, but salad is mostly lettuce.  felt good.

Went home, had a nap to rest my back.  Felt hungry so Chris went and got Indian take-out - lamb vindaloo (we shared) with rice.  This was just terrific - the best quality lamb.  The only problem for me was the potato texture was like flour.   Had a mango lassi - drank the whole thing and enjoyed.  Skyped with Mum and cousin Bev in Adelaide for quite a while.  Skyped with Rebecca and Declan in Kansas city.  Rebecca (Ben's wife) dropped in for a few minutes - that was nice to catch up.

Then I started to crash a bit - got upstairs, with Chris's help - into bed by 11.30 pm.

So a very good day - this of course is the effect of the dexamethasone, which i am still on - but really great to see all those people - and get to out first in resturant eating in 8 weeks - better that take out.  Almost no back pain today either, even though tumor is growing backwards through the chest wall.  but it is nice to feel almost good.  chris remains an indispensible help - puts up with a lot of requests from me- amazing really.

Tomorrow - Saturday - radiotherapy at 9.30 am.  Then we might eat-in Indian for lunch.  Will see.

today had visit from fran and brad taylor from madison, wisconsin.  they are great longstanding friends from sam's time in uni of madison.  they came around 11.00 am, and met our prosthetic guy, jeff palmer, who came to our house to fit the new leg - new leg works well - he came at around 10.30 am. - and did a really good job.
at around noon after taylors and palmer had left we went into uni of iowa hospitals for blood check - hemoglobin was 9.0 so had a unit of blood transfused.  ct scan showed no right lung now (all replaced by tumor), compression of the left lung from this massive tumor load from the right, tumor growing through chest wall at the back on the right - all this much unchanged from a month ago - except right lung completely replaced.  closure of the right lung would explain why less thick mucus is now coughed up as i guess this came from the right lung remnant. so that is good - my sats remain the same and expired volume the same at around 1000ml.  
the major change on ct is a growing mass just behind the left main bronchus at its origin - this was there 4 weeks ago, but has grown to encroach on the lumen of the left main, narrowing it down.  this explains the cough to and extent, as well as the asthma like symptoms, as well as the improvement on dexamethasone noticed this week (reduces tumor swelling). So this needs to be dealt with since it is at a critical part of the airway. either to stop to it getting worse, or to improve it.  2 choices  - place a stent, which seems really difficult to me, or targetted radiotherapy.  ray hohl organised visits with john buatti, also today.  he thought this was a good idea and do-able - so had planning ct done, and will have 5 treatments starting tomorrow(friday). very good service.  i asked karl thomas and kim baker what they thought about a stent, and they agreed with me - so good discussion.  caught up with amy nibaur - our cancer clinic nurse (in our lung cancer clinic).  kim baker spent a lot of time with me, which was good.
visited also while having blood by david stolz who provided information about the monthly cystic fibrosis muco-ciliary clearance meeting, per phone today, which he presented our work at.  that was very good also.
joe zabner also visited.
left the hospital at around 6.00 pm - my leg worked well all day.  chris watched over me, and trundled me around in our wheel chair.
came home to visit with herb berger who came at 6.30 pm for a chat (pre-arranged) - this was also very pleasant.
liquid oxygen was delivered to day so chris got our neighbour margie to let them into the house and do the delivery.  got a quote for resurfacing our decks  - so that will be done in the next few days, thank goodness.
so a big, but very useful day.  now i cant sleep tonight! drives me nuts.
had chinese for dinner, but quite late around 8.30 (after herb had left).

so we will see regarding outcomes, but i am very optimistic.