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!