Sunday 10-7-22 Day 12

 So its been 14 days since I checked into Hospital. My counts (for neutrophils dropped to less than 0.01 or as my coverdoc said today the machine and or pathologist “couldn’t even find one to count”. So there we go ! Now we Wait to see when they come up again. 

In Radom news bits:

My plan to revolutionise thestorage in the end store room has fallen on fallow ground. I notice early last week the box of fully wrapped (read slippery) full sleeve gowns was open and they had  poured on to floor. Individual wraps so no foul. So I refined  an idea, mentioned it to nurses and even to a nursing team leader. Great feed back! Hers the idea. It seemed to go great until I said I could do it for you all I need is some tape and a box cutter.  Lots of laughs but no box cutter showed up. So that dia gram is taped to the next box down the pile waiting to see if there are any takers.

In other news, I had a hankering for a chocolate milk shake. Where are you going to find that in a hospital.... on a Sunday? Nowhere! So I ordered a chocolate brownie! Chocolate milk, custard and cream for lunch. Mashed the brownie in the custard, added that to a spare water pitcher less the water. Added I cream and choc milk. Shook and shook. It was okay and cool. It really needed a blender as the fudge choc brownie was mostly a lump in the bottom of the glass.im going to have a little chat with Polly’ the pharmacist for our floor and see if they have anything blenders down there!

More later

Chris

Day 10

 Bit of a different story. I’ve had a tummy bug infection that had to be indentified before it could be treated. That took three days and 

All the while I had sleep interrupted, pain and horrible runs but it’s identified and I’ve had one of two pills to fix it better already today. 

My blood counts the good ones are just about zero so I’m in my most vulnerable starting today. They expect them to rise on Day 21, I’m making book on day 19.

Had visitors from Boonah and Seattle this morning very happy to see them. May get a visitor this arvo.

It’s just a waiting game now

More later

Chris

Day 6

 I. Totally in control of nausea, tick✅. No pain✅.energy✅(Thanks to speed). Good appetite ✅.

I’ve finished my 3of 4 chemo2. Chemo 1 finished on day3. And had a good visit from Doc Shoozenbootzen. And my Leukaemic cells have gone, on one chemo to seal the deal. 

Still have to see my good immune cells( neutrophils) drop to zero wait nervously for them to start rising again, about day21 but I’m predicting day 19. Call your bookie! The other.... mouth sores,  diarrhoea, hair lost, weakness etc still to come but I’m thinking it might be milder then predicted. 

More later

Chris

Day3

 This is the more complicated part of my treatment. I get one chemo drug on day 1,2,3 and the other I get Day 1,3,5,7 but thahta on a timed pump and I get it at 6pm and 6am. So actually the second half is on Day2,4,6,8. With me so far. I get iv push lasic, anti nausea. I get belly needles of blood thinners. I get pain meds as needed.

So far so the biggest problem is getting my back to stop hurting so I can sleep. Two visits by physio with exercises and hot pacs May have fixed it. Still eating and moving around myself ecepttoday as I have a bit of fluid on and it made me cough and I had a sore throat so they are testing me for covid etc. and I’m in isolation.

More later

Chris

It’s starting

 I’m in the Hospital. Had blood taken, checked all the charted medicines, and then went out to the pub for counter tea! That was unexpected but no docs wanted to see me on a Sunday evening, so the nurse said go for it. I’m back in the roon thinking about an early night and Bluey has returned to our apartment to finish unpacking. 

We arrived at the building and our sister in law showed up with the keys that she was good enough to pick upon Friday. They helped us take our stuff up to our unit , hookup Joyce’s workstation, and we went out for lunch. Such a great help. 

We were lucky to get a lease on this fubulous apartment across the street from the hospital! And there is an amazing pool,gardens, lounge bbq area on the roof. I’m happy knowing Bluey is comfortable while I’m here getting chemo.

So it’s all quiet and the origin game two is on so a bit of rugby league and off to bed.

More later

 Chris

I won't hold you in suspense

 Its bad news. 

As I mentioned I have been on a new treatment to hold off the evolution of my disease into  a worse one. That has not worked and I have been diagnosed with Acute Myelo9id Leukamia. I'll be going into0 hospital for a week of Chemo and then three weeks to recover in hospital then 5 months of outpatient treatment.

Bluey and ;I will be moving to Brisbane for 6 ;months in another week and I go into Hospital on Sunday the 26th of June.

Ypu will all go a google this next stage and will be a bit freaked out, I know I am but so far I have been very tolerant of side effects from chemo and have healed fast. remember I have had a month in hospital and five mno0nths after my bo0ne marrow transplant. and I may have mentioned that that I got out of that hospital one day short of setting a record for quick exit.

I'll be on email and phone when I can. 

more later

Chris

Nearly a year since my last post

  So it’s been awhile since I posted I wanted to catch everybody up.   I did go on new cardiology drugs and my arterial fibrillation worked out better.  And recently we found out why I was getting a lot of high potassium readings it’s because my blood haemolyses and turns into higher potassium.  So if I tell the blood collector to have it spun quickly and put some of the blood in a green top apparently that’s working to prevent people panicking about my high potassium .

 So for the last maybe six months time, my doctor has been worried about my blood cancer to the point where I he’s started me on a new treatment.  It was going to start sometime in the future because it was only slightly elevated issues but let me tell you a story about four weeks ago.

 Late in February Bluey and I went to rainbow beach for a holiday it was great! We ate too much and we drank maybe not too much but we had a good time and it was all good except at the end of it I started noticing that I was taking on a bit of fluid my legs were blowing up a little bit and since my monthly appointment in Brisbane was coming up we went straight from the vacation down to Brisbane where I had because I had a lot of pain on the left side of my chest I thought I had Dislocated rib or broken or something but the next day in the chair for treatment and my red cells have dropped dramatically from 105 down to 87 arm so that meant I had to have an immediate bone marrow aspiration and those of you playing along at home now how much I hate that but this was this was my 13th, It was particularly difficult because I had trouble laying on my side because of the pain in my,it turns out lungs. Doc shoezenbootzen put me in the hospital the get two bags of packed red cells, treat my lung infection, protect my kidney, get rid of fluid, and put me on oxygen. I was there three weeks!

“But I’m much better now”did anybody do it in the voice of Harry’s Father from Night Court.? Or was it just me? 

So that moved my blood treatment up to....today. I stayed over in Brisbane for the weekend and started the new treatment. For those of you asking me.... it is full purple gown, pull the drapes, chemo. But it’s an injection, two actually in both sides of my tummy and kick me out. I may have some side effects but since I have tolerated other stuff the doc doesn’t think it will be that rough. I do this every morning this week then go back to Hervey Bay for three weeks. Then we will come back down and do it again.

Bluey  has stayed up to do work but will be down with me for the entire week next time.

Hiccups update

 Well well.

So high level discussions between Butter Bean doc, cardiologist, pharmacist, assistant Butter bean doc, assistant Cardiologist, nurse practitioner (Queen of Renal) and me.  Lots of talk about how my oncology drugs also raise potassium, my AF control drug raises Potassium, how my AF drug reduces my already low blood pressure. Then they when on to changing my AF drug and add anticoagulant and drop aspirin. But how does that affect my high platettes?

Light bulb moment as the Cardi suggest I get ablation in brisbane. They zap the electrical circuits in my heart and I get rid of AF completely and off the drugs. They changed my drug for now and will investigate the op for six months. I’m back on weekly visits to Doc Butter Bean. If my morning potassium reading is below 6 I get to go home. If over they pull blood again and walk it directly to lab, as they still fear slow delivery in past samples may be affecting K levels. If still high I stay in and on telemetry. 

For those of you playing along at home you already know I don’t name my cast mates in this little drama because what I report is what I THINK they said.

Off to see Doc ShoozenBootzen on Tuesday.

Hiccups

 It’s been a while, a long while since my last post. I’m 18 years post bone marrow transplant or more accurately post peripheral blood stem cell transplant, thanks to great science, great Docs and Nurses and my brother Derrek Olin. Im also two years poet deceased donor solid organ transplant for my kidney. Thanks to the above and a nameless donor and their family. 

Okay news later.

Things I’ve learned:

(Why on earth is he making another list...he always forgets things!)

My wife is a hero!

You can have artificially Chimerism, the broad definition is two people in one but in this case two different blood types that can trade dominance from time to time. 

Nurses are great humans! 

Docs are the smartest people. 

I know more about my body and it’s processes than I even thought I would . Or even may have wanted.

Doctor Red knows even more than I.

I can make even the sternest faced Doc laughter so hard they double over.(it’s so fun to try)

Hospitals are not designed to allow a good night’s sleep.

Now the news I’m back in one.

For a few weeks I’ve been aware that my AF is not fully controlled and night before last I had a rough night up to pee many times and palpitations. My new watch told me I had periods of very high heart rate. I consulted the state register nurse hotline, my doctor by phone and they all agreed go onto emergency. I presented with high heart rate and they started looking. I got two different antibiotics in case some underling infection, maybe rejection of kidney. Etc

They ruled out somethings last night as my heart rate came down to normal for me...very low, the incorrect data about high creatin was thrown out. In fact it’s 109 the lowest it’s been for me. Scanned my new kidney, beautiful shinning butter bean (not exactly Docs words). Taught about pill cutter so my heart meds can be dosed more accurately. Stress and environment cleared pretty quickly (Apparently getting a new stove with poor directions is more of good stress than bad). 

It is now suspected that my high potassium (bad for hearts) trigged my AF. So I’m eating styrofoam balls coated with medication to trap potassium and expelled it.  I’m also back on the lasix express. As that also gets rid of the dreaded K. (Periodic table symbol for Potassium. 

Recheck my levels tomorrow and out of here, tuned up and better then ever!

wow time flys with a new kidney, global Pandemic and lazy author.

 So its been awhile.

My Kidney is performing pretty well. You may remember that it was anticipated that it would start slow and it it was a day or two late but came good pretty quick after that. It did plateau at about 140 on the Creatinine scale which was too high on a normal person but on me it was acceptable. You regular folk would be about 85 maybe a bit lower. Other recipients were excited when theirs dropped below 100. I can now report that about three months ago it s found an new Plateau level at 120 so all good.

My Myelo Fibrosis is still stable, I make slightly to little red cells, about 100 to 105, even with the now famous (by Lance Armstrong) booster shot. but its stable and the treatment hasn't changed in a while. I'm on a slightly different Lance shot but still good.

Woe I just realised the I might not have mentioned in my last update but Bluey applied for and got an amazing job with the local Council. It combines all the work she did in  Canada and all the works she did at the Neighbourhood Centre. She loves it. 

Im sad to report that we lost my dear Brother in law last October. It was a great loss and we are stilll feeling its impact. WE had been trying to0 sell our joint property with him and we had begun the negoqiltations, he and I, but he didn't get to see the result that its going to be turned into a Nature Preserve,.

We had long thought the old growth, or what we call remnant bush portion of the land would make a great tourist attraction but its going to be more then that with it becoming a preserved habitat for many unique species of plants and wildlife.

Covid19 has made me into a hermit. I get groceries delivered and make very few trips to town. Doc ShoozenBootzen pulled no punches when he said I would not survive ifI caught the plague. So here I am. I am lucky that the Premier of my state, Queensland, was quite forceful

When she closed the borders and even more important kept them closed when other states were pressuring her to reopen. Now there is a second wave going on in two states even more serious than the first wave. I fear that I will not be able to travel very far until there is a vaccine. 

h i've grown a lovely Covid beard.

So its all going great. I'm making Ginger beef for the first time tonight as its unknown in the land down under wish me luck

more later,

Update from the house

Update from the shed

Good Friday Update

Its Good Friday as i start this but its now Ester Sunday.  We are staying in Brisbane for the Easter weekend. Bluey is having a problem with her leg, due to an injury last weekend she has a flare up of cellulitis.  Its making her leg sore sometimes so we thought not being in the car for several hours would be a good idea. Also she had to go into the doctor on Thursday arvo and that meant we would have been in real heavy traffic Thursday arvo or Friday am and that’s not fun either so we are staying put and getting a lot of rest.

Its also a good idea to rest and hibernate this weekend because I’m having some issues. I haven’t have a migraine in many months but I’ve had two in the past week. I’m also having some issues with my water weight and the relative balance in creatinine. It seems that if I get dehydrated (sometimes on purpose by taking Frusemide) then my creatinine goes high. They worry and then I stop Fruz and my weight goes up and then my Creatinine goes down. I had to buy a scale for weighing at home and we’ll see whats what.

Not sure what we are doing about the migraines. The good bit is that about ten years ago I stopped getting pain from them I just get the visual Aura and then an weird feeling.
Now we are going to clinic on Tuesday as Monday is a holiday. Then I go to clinic again on Wednesday as its the day I was supposed to go home. But this little wrinkle means that I’m gong to clinic on Friday after Anzac Day and that I might get discharged that day and return to Hervey Bay. But if they aren’t happy with how my water is working it might be delayed some more. I think its a very minor wrinkle but we'll have to see.

So I made a chocolate pie with stuff we had here in the apt. Its not sweet as I had no sugar but the chocolate I used was sweetened.  It didn’t thicken as I only made it like custard and I didn’t have enough cookies for the crust so I used rice bubbles to extend and so that’s not too sweet either . So its like pudding on a crunchy bottom, sounds delicious doesn’t it? Bluey says its the one thing that I have made that is truly terrible.

So my project on this rainy Sunday is to make Nanaimo bars for the gang at the clinic on Tuesday. I actually bought supplies for them. Bluey is laughing really hard because we don't have graham crackers in Australia and we don't have Birds Custard powder readily accessible either so my plan is to use different biscuits for the base and make custard from scratch. Hey I like a challenge!

Update from the clinic

Tribute

Late March update

Just an update

Post procedure-a new year

Happy new year

Good news confirmed