How sick am I ? - They found a new drug!

I've been here just over a week now, I think I've racked up about eight weeks in hospital in the last three months. I can't even call it a second home.. it's more like my first home.

The constant monitoring of my blood pressure, saturation and heart rate, the bad food, the lack of privacy.. it has all become something I have gotten used to.

Two days ago I awoke to a massive fever, I barely had the energy to press the nurse call button. She arrived and asked what I needed. I said I'd like her to take my "obs" as I was febrile. She hooked me up to the machine that measures heart rate, oxygen saturation and blood pressure. She then reaches up to the wall above my bed and presses the "Emergency" button.

Within seconds I am surrounded by five doctors and four nurses.
My blood pressure was dangerously low and my heart rate was 145bpm.
Apparently when you run a high fever your blood vessels dilate and therefore your blood pressure drops.

Other than the fever I felt OK, I certainly didn't feel so ill that every medical practitioner on the 5th floor should be standing in my cubicle asking me questions and prodding me. Two litres of saline fixed the problem and I'm happy to say that as of tonight my stats are very good and no longer causing concern.

My sister Denise pointed out something I'd never considered.. She said to me "your problem is you don't know how sick you are" and I guess she's right. I've been here a week and other than someone who bumped the emergency button in the shower I'm the only person who has required such attention. This is the cancer ward, everyone here is very sick in one way or another.  But if I'm so sick how come I can pop down to the four square for a bottle of lemonade?

And that's the problem.. I just do not know how sick I am. I know I'm certainly not as sick as some of those around me, and for that I am grateful.

Last night I could not sleep, and when I did, I had crazy, surreal dreams. Then to top it off at 4am I had a night sweat. My first in the two and a half years since the bone marrow transplant.
I lay there in my bed soaked to the skin in drenching sweat, my bed clothes soaking wet. I thought to myself.. well this is it, I'm back into full blown Hodgkins Lymphoma.
Things only get worse from here. That bucket list is not going to get ticked off if I'm too sick to get out of hospital. I can't live from one blood transfusion to another.

I knew Dr D'Souza was planning on giving me the results of some of the tests today and I knew it was going to be bad. It was four thirty before he arrived. Sarah arrived shortly after and she was able to hear the news he had for us.

The lymphoma has invaded my bone marrow, however there is little sign of it elsewhere in my chest and abdomen. He explained that this was not entirely a bad thing as it meant that any treatment I underwent would have less to work against and that I could expect my blood production to increase, and therefore my quality of life. The lymphoma tends to hog the space in the bone, leaving little room for the marrow.
Once gone, the marrow takes back the space and blood production improves.

Then came the bombshell.. He said that there was a new drug that had only last week been fast-track approved by the American FDA, that it showed promise and he was going to ask the drug company if they would supply it on compassionate grounds. The drug "Adcetris"' is the first new treatment for Hodgkins Lymphoma in nearly 35 years and it showed promising results.

It was only after he had gone and I'd done some research that I realised just how promising it might be.

Suddenly there's a light back at the end of this tunnel. The battle now will be trying to get hold of some Adcetris.

Meanwhile I'm still on high dose iv antibiotics, antivirals and as of today they started me on an iv anti-fungal (something I had earlier suggested) just to be sure I have no other nasties growing that could kill me once treatment is started.

..Ron

More tests..

I probably should have mentioned that I'm now up on the 5th floor in the oncology ward. This time the short stay unit lived up to it's name.

Today I had hi-res CT scan of my chest taken and from that the doctors hope to work out just what is causing my cough and lung problems. Is it BOOP or Lymphoma or pneumonia?. I do think it's odd the sometimes my breathing feels completely clear. You wouldn't expect that if it were a degenerative type problem I would have thought. Anyway I should know by later in the week.

Thursday I have yet another bronchoscopy scheduled, where they put a camera up my nose and down inside my lungs and take a look around. Then following that they are going to do another pleural aspiration, where they insert a needle into my back and drain fluid from my chest cavity.

I got outside today for some fresh air and exercise. I walked for about 600M, which is a long way for me these days. Probably the most I've done in 3 months. Not a bad effort but I'm truly exhausted now. Will spend the rest of the day laying on my bed and relaxing/recovering.

...Ron

Stuck here for a wee while yet..

Well it's now Monday lunch time and I'm still stuck to this hospital bed and I'll be here for a few more days yet.

Initially I was quite frustrated and angry that they had kept me in because I ran a fever on the night I was getting my blood transfusion. They have pumped me full of antibiotics and denied me panadol unless I run a fever. Where as if I take it before my temperature rises, a fever never eventuates.
However I finally got to talk to my haematologist this morning and he has explained his concerns.

He doesn't want to risk missing an opportunist infection, as if I am to have any chemo them I would be defenceless against it and that could prove fatal.
He also agreed that the fevers could just be a symptom of the Hodgkins Lymphoma.
To try and get a better idea he has scheduled a bone marrow biopsy, CT scan and possibly another bronchoscopy for this week. So I'll be here for a few more days yet.

I've had to phone a number of customers and explain my predicament and all have been fully supportive. Still, I hate letting people down.


Ultimately I don't mind being here if it means we find some answers to my tachycardia, anemia, fever etc.. If it means a better quality of life, even short term, it's well worth it.
Mind you so far no one has been able to link any of the symptoms to one thing. That's frustrating. If it could be proved, say for instance, that my bone marrow was compromised by Lymphoma and as a result was working poorly at making red blood cells (and platelets) causing the anemia and the anemia caused the tachycardia, then I would at least have an answer and know that maybe chemotherapy would buy me some quality of life for a period of time.

However there are some serious risks of fatal infections when you have an immune system as weak as mine.

Since starting this posting I have had a bone marrow biopsy. My fourth since I started treatment over 5 years ago. Trust me it doesn't get any easier. I would call it a very intense discomfort. ! For those of you not familiar with the procedure, a device that basically looks like a cork screw but has a hollow tube rather than a spiral, is twisted and pushed into your pelvis and takes a core sample of bone, and blood/marrow.
It's pretty yukky.!!

 I'll post again once the results come back.