Hospital again

Last Monday I woke in the middle of the night with a high fever. I woke Sarah and we decided to head into the day ward early and let the docs know.

We already knew that I had a couple of bugs growing in my system but as they previously had not caused any problems with fever we had taken a wait and see approach.

The most prudent thing to do was to be admitted and administer IV antibiotics.
Once again the Doctor asked me if I wanted to continue being treated if the infection spread. He said it would be unlikely that I would survive should I end up in ICU again.

Over the last few months and in particular the last three weeks I have become progressively more unable to function without extreeme fatigue and very distressed breathing. Sarah has to help me get out of bed and get dressed. She has to shower me as I sit in a chair as I cannot stand without becoming very dizzy and coughing.

I've lost a huge amount of weight and at the time of being admitted to hospital only weighed 55kg. Food had totally lost all appeal, but I still ate as much as I could, however it made no effect to my weight.

On Thursday morning the Doctors came and visited me on their rounds. They asked how I saw things going from here.
 I told them that I felt I was in a downward spiral and that ultimately once I left hospital it was to progressively get worse until I died.
There was nothing anyone could do.

My bone marrow won't produce any blood, I live from one transfusion to the next. Within a few weeks I'll be too weak to even come into hospital for those. Death would follow within days unless I was admitted to hospital and even then it would only be until I faded away.
I think they asked the question so they would know that I had a grasp of the severity of my situation.

Things certainly looked grim. Any hope of further chemo treatment are curbed by the fact that I'm too weak to survive it.

I then  suggested to the Doctor a plan that Sarah and I had discussed the night previous.
All my symptoms, the lung function, the weight loss and fevers were all signs of a relaspe of BOOP, the lung disease that almost killed me in 2009 until I convinced a young respiratory Doctor to treat me for it. My cancer Doctors had up until then (and like now) insisted it was the Hodgkins Lymphoma that was the cause of everything.

Our plan was to treat me with high dose steroids. If it worked we would see a response within a few days. I would rapidly gain an apetite and weight, my fevers would reduce and my breathing improve. We had nothing to loose by trying and everything to gain. After-all I was a dead man walking. I could fade away or have a few more good months (or longer) before possibly succumbing to infection from my steroid weakened immune system.
Basically I get to choose the manner in which I die. Slowly in a bed or quickly one day in the future from infection.

The Doctor (head of the oncology dept and regarded as one of NZ's top oncologists) said he would go away and talk with his team. Twenty minutes later and I had permission to start on 40mg of prednisone; the exact dose I had also decided on when working out our treatment plan. (Had they said no I was going to do it anyway).

It's now been four days and the improvements have been dramatic. It's early days yet though. Going by my notes from 2009 I should see my lungs starting to recover after about 14 days. (read my blog posts from Dec 2009)

It's starting to look like Sarah and I may have just saved my life, at the very least improved my quality of life and bought more precious time together.

You have to wonder though.. The Docs were sending me home to die, so convinced that it was the cancer killing me (it will in time) that they never considered looking at anything else.

To say we are pretty proud of ouselves would be a huge understatement.
Now to get home, eat, get fit and enjoy the time I have.  :-)


..Ron

Running on empty.

We have pulled the plug on the latest chemotherapy drug. Like all the others we have tried we just didn't get the result we were hoping for. The lymph nodes in my groin have only shrunk a little bit. We were using these easily palpable nodes to gauge how well the Vinblastine might be doing against the larger nodes hidden in my body where we can't see them.

My blood counts haven't done anything spectacular either, just small increases in the hemoglobin between transfusions.
In about ten days we shall start on yet another drug, Cyclophosphamide. I'm not expecting it to be any better than all those that we have tried before it. I guess it's really clutching at straws time now.

My breathing is not good and is laboured and fairly fast with a constant cough.
To me it appears a lot of my health decline is due to my lungs. The loss of appetite, weight loss, muscle wasting. The problem is that treatment for it would be a massive increase in my steroids.
That may give me some short term improvement in the quality of my life but would ultimately dramatically increase my chances of a fatal infection. I would be lucky to survive a few weeks.

So we have to ignore that and just put up with lungs that barely function and cause my body to waste away. I currently weigh just 56kg, I'm just skin and bone. No muscle and just a little fat on my stomach from the effects of the prednisone. Looking at myself in the mirror I look like a concentration camp survivor, and I don't say that lightly.

If I continue to loose weight at this rate I'm afraid my chances of surviving anything more than a cold are virtually zero. I'm finding it very difficult to move around I'm so weak. Standing up makes my heart race and I become dizzy and puffed. I have to stand very slowly and wait a minute or so before moving. Once moving I can only walk a few metres.

Working with what I have, Sarah and I are hoping spend a few days at Foxton beach and enjoy the Christmas break. Some family members will be joining us on Christmas day.
My plan is to stagger in the door, fall into the lazy-boy chair and remain there till it's time to come home on Thursday for more blood.

Wishing all my readers a very merry Christmas and I shall post again around the new year.

..Ron

I nearly spoke too soon!

After a week of pleasing haemoglobin counts Sunday night was a near fatal disaster.
I had been taking antibiotics prophylactically due to my concern about a possible chest infection that I felt might be building. It didn't eventuate even though my breathing still feels awful, like a bad case of asthma.

What did occur is a very bad case of antibiotic induced diarrhea. This really puts my whole gastrointestinal system to the test and I wasn't too surprised to discover I was bleeding internally as well.
I didn't worry too much because it usually only bleeds while you are actually sitting on the toilet. However this time it must have continued for some time afterwards because by morning I was so fatigued that I could not get out of bed or dress myself. I was incredibly weak.

We went to the Day Ward as scheduled and a blood count revealed my hemoglobin count to be just 78, the lowest I have ever been. Two units of platelets and two of red blood cells helped.
I've been told that I would be highly unlikely to survive a significant internal bleed. It must have been just a small slow one. What puzzles me is how a spontaneous bleed could start but stop when I have no platelets to make it clot? I'm just glad it did! Another bullet dodged.

It's now Wednesday and I've just returned home from another day of transfusions, again two of each of platelets and red blood. I've been feeling really good all day, I've mustered up some energy from somewhere. Certainly not my blood as the counts were again very low today. It could take a week to build up to my usual baseline count. The nurses joked that I must have received some Superman blood on Monday, I suggested more likely Lance Armstrong's !

I start GCSF today and if my neutrophils and white cell counts return to normal I will have more chemo on either Friday or Monday. I'm guessing Monday.

Update later..  Ron

It's been a hard couple of weeks. But I'm still here!

Sorry for the long break since the last post, So much has happened that I've just not had the time or energy to write.

It started off a couple of weeks back when I blew out a couple of high grade fevers.
I also had quite severe night sweats that left the bed soaked.
I arrived at the day ward and settled into my lazy boy chair for the day, (one of the few small comforts of being in hospital three days a week.)  The nurse took the usual blood sample so we could get the blood counts and decide on what we needed to transfuse that day. I suggested she take a couple of blood cultures as well to make sure my fevers weren't an infection. Something that would be fatal if left untreated in my situation.

The next day, Thursday, I got a phone call from Paul the duty doctor on the day ward. I'd grown a nasty bug on my PIC line and I needed to be admitted urgently.
Bugger! On one of my few days off I really did not want to go in but to not go in would be foolhardy.
Once again it was a long wait in a cubicle in the Emergency Dept while they found me a bed in the cancer ward. Because of my neutropenic state I was fast tracked, so at least there was no waiting in the reception area.

Four days of IV antibiotics on the ward and I was finally discharged late Sunday night. The next morning after just twelve hours at home I was back on the day ward getting more blood. Tuesday off, then back in on Wednesday. Thursday saw me in surgery have a new "Power PICC" inserted in my right arm to replace the infected one that had been removed.

I could write a whole blog on just how bad that exercise went. I never have good luck with these procedures! Three attempts were required to get the wire into a vein by which time I was stressed to the max after well over an hour of massive discomfort.

Next day it was back in to the day ward for more bloods. It's now the weekend and I'm enjoying my first break in two weeks. However you have to temper that with the fact that I'm still quite weak and fatigued so It's not exactly a holiday.

On the good news front.. Last week I required far less red blood cells than I usually do. Just two units instead of the usual four or five. If I were to be optimistic I might suggest that this may indicate some recovery in my bone marrow. Perhaps the chemo is doing some good? The coming weeks shall tell.

While on the ward I was treated by a young male doctor I hadn't met before.
Like all the other doctors he was concerned at my constant use of nurofen to keep my fevers at bay. He suggested a novel treatment. A drug, meloxicam, that is less likely to cause stomach bleeding and problems with my platelets. He wasn't sure if it would work and said it was unsubsidised so I'd have to apply for it.
It's a once a day tablet that costs $28 for a 30 day course.
I said I'd give it a go. So far I have had no night sweats and I can get through 24 hours with just two panadol to treat the low grade fevers. Very pleased as I was on five nurofen and five panadol previously and waking through the night to take them.

Sarah and I decided to purchase a wheel chair for me a couple of weeks back.

I don't need it all the time but some days I'm just too breathless and fatigued to walk the distance from the hospital car-park to the day ward. It also means Sarah and I can go for strolls now that the summer weather is approaching.

Just to end on a good note here's a list of positives I can be grateful for today.

I can still drive, we are at the cottage in Foxton Beach this weekend and I drove the entire two hour trip and felt totally capable.
My blood counts appear to be improving.
I'm not as fatigued as I usually would be. I got up and dressed myself with very little effort. Some days I can't pull my jeans on I'm so weak.
I don't have night sweats like I used to.
The lymph nodes in my groin are no longer getting bigger and I almost think they are smaller. Who knows, should have measured them ;)

We applied for a mobility parking card last week. Can't wait to see the looks on peoples faces when that's on the windscreen of the Evo 6.5 :)

A week of pain.

I mentioned in my last post that I was injecting myself with GCSF growth factor to bring my white blood cell count up. The counts got back into the safe zone last Wednesday but it was decided to defer the chemo scheduled for that day until this week to give my blood a chance to fully recover.

The back, muscle and joint pain just got worse and worse however. By mid week I was in terrible pain. I think I spent the best part of three days just laying in bed groaning. None of my usual painkillers seemed to work well enough to even take the edge off the incredible ache from my lower back, hips, thighs and knees.

It's a lot better now and a couple of panadol easily deals to the back-ache that comes and goes.
However I have chemo on Wednesday and will start on the growth factor again soon after that as my white cell counts drop again as a result. I'm really not looking forward to another three days of what could be compared to torture on the rack.

Today was a milestone, for the first time ever my platelet count read absolute zero. Sometimes the nurses would say I was at zero but when the printout arrived it would be "1" or close to it.
Apparently most doctors have never seen a patient with a zero platelet count. You know me.. like to be different ;)

I bled all weekend from my nose. It started on Friday even though I received two units of platelets that day. I was thinking of going into the emergency department on Sunday but then the constant trickle stopped and the thought of going into ED for probably six or more hours for what takes an hour in the day ward put me off a little.

It turns out that I never actually stopped bleeding: my nasal cavity had just filled up with so much congealed blood that it acted as a plug. I waited until I had received my two units of platelets today before blowing my nose. I looked down at the tissue in total disbelief. "Did all that come from me?"
Gross!

Because of my inactivity over the last week or so due to pain and generally feeling really crappy, I've lost more weight. I'm now down to just 57kg's. That's really scary. It's six kg's lower than when I got out of hospital in June. I think one of the problems is that my muscles are atrophying as a result of  greatly reduced exercise. The doctor at the hospice had told me not to exercise as it would use up energy needlessly and leave me fatigued.
I think she thought I was closer to the grave than I do! The result is I'm now very week in my legs and need to get back on the treadmill for some gentle walking to get back some muscle strength and the weight that comes with it.

Well I'd better go... coughing fit.