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.

How am I ?

That seems to be the first question most people ask me these days.
The simplest answer is to just say "Ish".
If I'm feeling like sharing I'll say "relative to last week?" "better/worse"

There's just no way I can describe how I feel some days without going into information that people just don't to hear or deal with. Most just want me to say "good thanks" so they can get on to what it is they want to ask or talk about. Family/close friends excluded.

Tomorrow I receive my third cycle of Vinblastine. I have no idea if it's working. There's been no improvement in any area that I can see. In fact I've started having night sweats again after a break of over four years.
They are not nice and I soak the bed sheets like I've spilt a jug of water in the bed.
I don't sweat from my back much anymore since having radiation in 2008. However I sweat from my arms, legs and chest. When I woke this morning drenched, I lay there watching the beads of sweat form on my arms. Nothing I can do but dry off and put on a dry tee-shirt to isolate me from the cold wet sheets.

I'm taking GCSF growth factor to try and get my white cells back into the normal range as they have been depleted by the chemo and leave me open to infection. Side effects from that include back, muscle and joint pain.
Unfortunately a side effect of the chemo is also lower back pain. :(

My breathing swings from Okish, and then bad to worse. Sometimes in the same hour.
Fatigue levels are very high. I get fatigued and start to cough if I stand up and move around the house. I can only walk very short distances. If I sit quietly in a car for instance, I can go without my oxygen for about 2 hours without too much distress. However it's always nice to put it back on for a small increase in well-being.

I've been bleeding more lately, my arms are a mess. Twice Sarah has bumped into me in the slightest way and I've been left with a 20mm diameter blood blister. I bleed into my stomach too, from where or how we have no idea. All I can do is try and keep my platelet counts up.

Thing is I'm still here to complain about it. For that I'm grateful. I just wish that one of these days I'll get some good news, no matter how small so we can celebrate and feel like it's all been worth the suffering.

Maybe tomorrow's counts will show a improvement.. forever hopeful  :)

Vinblastine

Just received my first cycle of Vinblastine chemotherapy today. Would be so good if this one works to remove the cancer from my bone marrow so i can start making my own blood again. At least we are trying new things, better than the "time to give up" suggestion I got last month!

There was a new Doctor covering on the day ward today and she approached me while I was having my chemo and challenged me over my request to have a unit of blood today along with a unit of platelets. This is a situation that arises nearly every time there's a new doctor on the day ward that does not know me or my situation.

I was quite annoyed at having to explain yet again why I like to try and keep my counts as high as possible and she certainly gave the impression that she was going to deny my request.

Then she pulls out a note from Paula, the doctor that is usually covering the day ward and tells me that it says that "Ron can decide on his own blood requirements". I growled at her and asked why she put me in a situation of having to justify my decisions when all the other doctors give me a free rein.
"Oh I just wanted to get to know you" she replied. "There are other ways" I said "than making me stress over something that wasn't even an issue"!
Doctors.. why do I have to bang heads every time I meet a new one??  Rant over.

So far the chemo hasn't made me nauseous, I'm not expecting it to either.
I'll update next week.

By all accounts my daughter Ashleigh and husband Michael are having a great honeymoon travelling around Taupo, Napier and everywhere in between. I look forward to seeing them again on Thursday when they return.

...Ron 

I'm now going to ignore...

I'm now going to ignore my blood counts! Well at least stop trying to put any meaning to them.
Today my haemoglobin was 102, only down slightly on the 109 from Wednesday and that's without a transfusion. So who knows?

Platelets hadn't bottomed out completely either.
Lets see if I can get through this long weekend without too much drama :)
Shall pop into the hospital on Sunday and grab a unit of platelets just to be safe.

Codeine worked well on the left flank pain too. Once the pain went the muscle stopped spasming and now doesn't hurt at all.  :)

I'm really hoping for some fine weather this weekend so I can take my Evo 6.5 TME out for a drive.
It's been a couple of months since I last got to have a run in it and since then it's had quite a few improvements made to it.

Last weekend my good friend Michal completely groomed and waxed it for me. It shines like a new penny :)  Last night he sent me a text saying he wanted to put another coat of wax on and would pop over on saturday morning.

He just loves grooming nice cars. (His 1968 Camaro is groomed to show condition.)
That's lucky for me because I couldn't even work the hose these days!  ;)

..Ron

Hmmm

My counts had been slightly improved for a couple of weeks now and there was some hope that my bone marrow might be improving. Then out of the blue on Monday we have appalling counts of 1 for platelets and 90 for hemoglobin.

The bubble burst. It explains why I was so fatigued over the weekend.
Then yesterday Sarah and I had a meeting with a doctor and a nurse from the hospice.
That really was a sobering discussion. The only good thing being that they said I wasn't in need of any hands on help at this stage, mainly advice etc.

Then today we had a follow up meeting with my haematologist Alwyn D'Souza.
We both expected very bad news. When we saw him three weeks ago he said it was probably time to give up. I sent him away with instructions to look outside the square for other drugs and to also investigate bendamustine. I didn't really expect much and Sarah and I both felt that he would have used the time in between to soften the blow and today would be a repeat of last time..IE: give up.

But that wasn't the case. He'd been on holiday most of the time in between and done considerable research in his own time. Today he discussed several chemotherapy options. Even going into depth on how each one worked at a molecular level. I was very impressed.

So once again we have a plan, several in fact. Next week he will discuss with his colleagues the various options and see what the consensus is.

Considering both Sarah and I were dreading today's meeting, we both left feeling very confidant.

Don't get me wrong, there is no expectation of long term remission, but we just might find a palliative treatment that offers a much improved quality of life over what I have now, and possibly less or no dependency on constant blood transfusions.  We live in hope.

CT scan results don't show a lot, some nodes bigger, some smaller. Nothing new, so I'm happy about that.

I've pulled a muscle in my left flank from coughing, the pain is incredible! I'm trying to find the right pain killer from my not inconsiderable stock that might help. I'll try codeine tonight.

This weekend my daughter Ashleigh is getting married to her partner Michael Kussrow in Brisbane.
I'm unable to attend due to my poor health so they are coming here next week for their honeymoon and to catch up. I'm really looking forward to it.

...Ron

Not a lot happening

Just a quick update..

I got through the week with just the one unit of blood given today. That's a big improvement on 3-4 units I used to require each week. The pattern seems to be one unit on a Friday and that will see me right through for seven days.

Platelets aren't so spectacular but are improved. I now have one unit on each of the three visits, Monday, Wednesday and Friday. My counts are usually around the 3-4 figure and I have not had a bleeding event in several weeks.
So some improvement there but not anything to get too excited about.

I've split my prednisone dose to 10mg morning and 5mg at night. It makes for a far better night's sleep but my body complains bitterly about the day time reduction with aches and pains. I'm hoping it will adjust over the next week or so.

Breathing has improved but I still have the odd period of breathlessness.

That's all for now  :)   ..Ron

Those blood counts..

The haemoglobin counts on Friday and again today (Monday) showed a big reduction in the rate of decline.
I'm hoping that over a period of time the slow deficit will change to an increase at each blood count and eventually I won't need any more red blood transfusions. Certainly today we didn't need one as I had a somewhat healthy count of 119 after a single bag of blood on top of Friday's count of 109. Usually after a three day break I'd be needing 1-2 units.

My platelet counts are not so inspiring however. There may be a very slight slowing in their rate of drop but it's not enough to be sure. If they spark up like the haemoglobin I'll be a very happy man.

Friday I had my CT scan. What a drama that was! These things never go well for me :(
As usual the nurse failed to get a line into my arm. I asked her to be careful not to "tissue" the needle (put the needle right through the vein) and sure enough she managed to do it straight away. I said to her "OK well give up on that one" but she ignored me and decided to test the line with a saline push. Presto! instant haematoma. GRrrrrr!!!

She then called for a doctor to have a go and she got a line in without too much trouble.
(However there is now massive bruising and around the area of the line.)
The bad news for me was that she put the line into the same vein as the one that was damaged. (To be fair it's very hard to tell when it was so far away from the first sight)
Once on the scanning table the line is connected to a "power injector" that injects a contrast media into the vein in order to gain a more defined CT scan.

The male nurse who over-saw the injection did a test on the line with saline first and I said that it stung a little. He said that was normal. Then the contrast was injected by the machine and my arm started to sting some distance from where the line was inserted. It was hurting at the point of the failed line some six inches away. Next thing the nurse is saying "oh that's not right, that's not good" and I look at my arm and it's blown out at the failed "tissued" attempt. The vein of course leaking like a sieve.

He left the room and came back with an ice pack which he got me to hold against the large blue bump of a haematoma on my forearm. I'm then told that It was lucky that it didn't happen with the old contrast media as that was quite toxic. Oh that makes me feel heaps better I think to myself.

I returned to the day ward via a wheel chair as I was completely worn out by this stage.
The first thing the nurses there say is "oh you should have come here and got the line put in" I never thought to do that. Given my near 100% trauma rate with the CT nurses/doctors I shall remember that for next time.

Sarah and I had planned to drive up to the cottage at Foxton Beach on Friday afternoon but I was just not up to the drive so we put it off till Saturday.
I've given up trying to ween myself off prednisone, there's bigger battles to fight. So on Friday I decided to go back to my old baseline dose of 15mg but split it 10mg in the morning and 5mg at night. The result is brilliant. I sleep better and I don't cough all night long.
This made the stay at Foxton one of our best and we both enjoyed the stay. I felt well enough to get out for a short walk along the estuary walkway (and I do mean short, 100 metres).

My next goal is to try and build some muscle. I guess it's a case of "use it or loose it" because as soon as I stop regularly going on the treadmill I become unsteady on my feet again and lack stamina for walking.

I won't even go into what my weight's doing! Let's just say that a two week course of antibiotics and the resulting side effects have not helped in the slightest :(

I get my Evo back from the engine tuners this week. He's had it longer than I have so I'm looking forward to going for a drive with it's 35% power increase!. One of life's small pleasures  :)

Up until this weekend it was looking like driving was going to off the menu as my oxygen saturation rate was getting quite low. I was down to 84% without oxygen support and to keep my mind sharp enough I've found I really need to be a bit closer to 90%.
With the change in prednisone dose I'm now managing to stay above 90% without oxygen, so I feel a lot happier about driving.

Later ...Ron

I think my blood counts are teasing me!

On Monday my Hemoglobin and Platelet counts were a little higher than expected.
I never take the numbers as gospel because there is a large margin of error, as I've found out in the past when I've been told I had a high count only to be countered by a very low count the next time when we haven't transfused.

So today's counts were awaited with some trepidation. If they were still higher than expected then maybe they were recovering. I need to see a continuous trend before I get too excited.
Today they were slightly up again. Or should I say not as low as expected.

I'm approaching Fridays counts now with a tiny degree of optimism. If there is in fact an upward trend and it continues, it means a lot. Firstly that my marrow is slowly recovering and that the Gemcitabine hasn't been a waste of time. That then opens doors to add other chemotherapys to the mix.
It also means that if I can produce my own blood I won't be in hospital three days a week getting transfusions. My quality of life will improve significantly.

Certainly in the past my marrow has taken considerably longer than the norm to recover from chemo. This may well be the case again this time. I live in hope.

I'll hold my breath until Friday and post an update.

Keep those fingers crossed for me.. it might just be the edge I need!

..Ron

Gemcitabine treatment failure.

It became obvious to me a few weeks back that the Gemcitabine chemo was probably not working.
The enlarged nodes in my groin that initially shrunk with the first cycle had become a lot larger and my blood counts were failing to rally.

Today Sarah and I met with Dr Alwyn D'Souza and discussed where to from here.
He didn't pull any punches. If it were anyone else he would tell them it's time to give up.
His quandary is he knows that I'm not ready to give up and that puts him in the unenviable position of trying to find something that just might give me the window of remission I'm hoping for.

Things are pretty bad at the moment, the Gem has knocked me around quite a lot with the side effect of lung inflammation making me feel some nights that I'm climbing Mount Everest without Oxygen. (and that's with oxygen!) I do find myself pondering my situation in the wee small hours of the night and my fighting spirit tells me not to give up yet. There will come a time, as I explained to Alwyn, that I may well decide that enough is enough. I'm not at that point yet. He said a lot of patients would have by now.

I have a CT scan next Friday, that will confirm what we already know but will also help us re-stage and get a clearer picture of tumour mass etc. Then in about three weeks we will meet again and hopefully he will have come up with a novel treatment plan. If not and he decides he has done all he can. I'll look at other options. As I say we are not ready to give in just yet. There's a plan in my head of what the next year will bring and I'm focusing on that. It involves more quality time with Sarah, more sunny days soaking up the sun's rays at Foxton and more time appreciating all that I have and have had.

However just to prove I'm not in denial I have asked for a referral to the local hospice. Both for support for myself and to a greater extent Sarah.

The only good news to come out of today was that we are stopping the Gem chemo treatment. So short term I should start to feel slightly better, however the blood transfusions will continue.
In answer to a question about how long the transfusions could go on for in light of the fact that my bone marrow is shot. Alwyn said "for as long as you're alive" apparently they can't deny a patient that kind of support. I suppose that's one good thing.

Till later ..Ron

Ok so it's been a while..

I guess if I needed an excuse for not posting and keeping people up to date with my progress it would be that I'm just so darn fatigued.

I'm heading towards the end of cycle two of the Gemcitabine chemo, I had the second session on Wednesday last week and now have no more till next Wednesday.

I've been suffering horribly from lung problems and fatigue. If I stand up I become incredibly breathless and my heart rate becomes very rapid. Sometimes I feel like I'm on the verge of passing out. I've just re-read my blog from early 2009 and I had the same symptoms then, so I guess I shouldn't be too concerned. Perhaps I was expecting an easier ride this time round. Maybe it's just my memory, it blocks out such things and I find myself thinking everything was a breeze in the past.

Sarah and I went to the Cottage in Foxton Beach last weekend for a break. The weather was perfect and I soaked up the suns rays in the courtyard for a few hours. I'm sure I could actually feel the energy flowing into my body. Was very therapeutic.

Sunny Spring day at the Cottage, Foxton Beach.

 

I'm more than a little concerned about my lung function. It's pretty bad and I find that It's a lot more comfortable if I leave the oxygen connected as much as possible. The exception being when we have to drive anywhere like into hospital or up to Foxton. Once there it's straight back on otherwise I feel like I'm slowly suffocating. Coughing leaves me fighting for air. It's a horrible feeling and I have to admit it bothers me quite a lot.

 

Blood counts are still being chased with transfusions of both platelets and haemablobin (via whole blood) every Monday, Wednesday and Friday.

 

My weight is still pathetic at 61kg and refuses to rise much above that. Maybe once the chemo is finished? How long that will be is anyone's guess!

I see Dr D'Souza on Friday for an update, I'm hoping he has a new plan. I'll let you know..

 

..Ron

Gem cycle 2 and more bleeding.

I haven't posted in well over a week. The reason being I've been just too fatigued to do almost anything.
Sarah and I picked up some sort of respiratory infection over a week ago and It's knocked me back to the point that I'm about as weak as I can get and still move around the house (all be it tethered to the oxygen tube). On top of that I've been battling with low blood counts and bleeding.

Today I'm starting to feel a little better but it's not a huge improvement.
My breathing has been so bad I can hardly sleep at night for the discomfort and I have to sleep sitting upright with three pillows. At the beginning it was so bad that when I breathed out the air would keep flowing for up a second or so after I'd stopped exhaling. It's a bit better now but I still make whistling and crackling noises when I breath and it gets worse if I try sleeping on my side.

After the drama of the thirty two hour nose bleed from a few weeks back things only got worse as far as uncontrolled bleeds were concerned. I developed an internal bleed into my stomach somewhere and that was really scary as there was no way of knowing how bad it was.

After thinking long and hard about my current transfusion situation and what my counts have been (1-2) I suggested to the doctor that I would need at least two units of platelets every time I came into the day ward in order to keep the count above 5 or so. I've never had any bleeding episodes previously. They didn't start until my counts got down around the 1-2 figure of recent weeks. The problem being that we weren't putting enough in to cover the distance until the next appointment which could be 3-4 days away. So I'd be fine for only about half the time and at risk the rest, it just didn't make any sense having only half the protection. It just made the window for uncontrolled bleeding a bit smaller. It didn't fix the problem.

So now I decide how many units I will need based on the FBC (full blood count) taken when I arrive in the morning and we plan from there. So far so good.

I had my second cycle of Gemcitabine yesterday, again so far so good. It's hard to say at this early stage in the course of things whether it's working or not. Dr D'Souza isn't expecting my bone marrow to rally until after this cycle finishes in twenty days or so. The crazy itch has completely gone so I'm grateful for that. Would be good if I could get these lungs to start working so I can exercise and get around without this oxygen tube trailing behind me. Guess that will come with time.

..Ron

A new schedule for bloods

I had a fantastic weekend!

Saturday I had enough energy to do some clearing up in the workshop of my tools that were scattered over the work benches where they had sat since May when I went into hospital.
Then my friend John came over and together we finished the high performance exhaust system on my Evo 6.5. He hack-sawed the pipe, I welded it and then he bolted on the car. By the end of the day I was worn out but very happy that I'd done so much. It was certainly the best day I'd had in the last six months.

Sunday I felt a little worse for wear and by Monday a complete write-off.
Today when I went in for more blood the answer was obvious: My haemoglobin was down to 82, the lowest count I've ever had!

I spent all day getting the two units each of blood and platelets (they were down to a count of 1) and did some thinking. The Tuesday/Friday schedule just wasn't working. The platelets were probably only good for raising my counts for a day, the rest of the time I was flying without a parachute. Whats the point of having a transfusion that only gives me less than 50% protection?

Then there's the haemoglobin. I'd been trying to keep my minimum count at around 105 and then transfusing to always be above that. But I'd had a good count early last week and made the mistake of only asking for one unit of blood. This meant that by the time Friday came around my counts were in the low 90's and most of the two units I got went towards topping that up and not actually giving me the benefit of a reasonable blood count that afforded me some oxygen to my muscles. Hence fatigue set in after only a day and half.

I spoke with the duty doctor and suggested that somehow we needed to get three units of blood into me in one day and that we needed to change the frequency of the transfusions to three times a week.
Monday, Wednesday and Friday being the best option. She agreed as did the senior nurse who is responsible for the schedules. So that's now the new plan: Keep the bloods at a more consistent level and try to iron out the big dips that leave me open to bleeding and fatigue.

This new schedule starts next week. This Friday I will arrive super early and get three units of blood to bring my baseline haemoglobin back to something sensible (for me).

I had a heart scan this morning to see if there was any damage from the last infection. The technician couldn't really say anything but what she did say was that my heart muscle was in good shape considering it's "running flat out". I'm sure that if there was a problem with the heart valves I would have heard from one of the doctors during the long six hour wait while getting blood today. ;)

So far I've managed to avoid any infections (I guess had I not you wouldn't be reading this!) which pleases the docs no end. I think they have strong fears that I'll end up in ICU again. That's something I am absolutely determined not to have happen. I doubt, as they do, that I'd come out alive.
I love a challenge and I can't think of a better one than staying a live!  :)

..Ron

24hrs later..

After bleeding all day Thursday I was very tempted by late afternoon to go to the emergency dept.
I decided I wouldn't. My logic was that I wasn't loosing enough blood to be of significance and that I was due in the hospital day ward the next day for blood anyway.

Sarah and I got up up early and got to the blood & cancer centre just after 9am. The nurses and doctors on the front desk could see by the tissue plugs in my nose that were dripping blood that things weren't quite right today.

I found a chair and within a short while two large bags of platelets had been administered via my PICC line. I continued to bleed profusely from my nose for several more hours.
Finally I took the gamble and removed the plug from my right nostril. A large gelatinous red/black mass of gunk followed it out. I continued to bleed for another couple of hours.

Then later in the day while getting two units of whole blood I was talking to the duty doctor and quite subconsciously gently "pulled" on some "mucus" at the back of my throat. That was not a good thing to have done! It just kept on coming until my entire mouth was full of this mass of congealed blood! I looked around for somewhere to spit it out before I choked as my nose was still blocked. Sarah must have realised what the problem was because she handed me a plastic bowl and I quickly emptied my mouth's contents into that.
Now that was gross!

It wasn't until about 5pm Friday that I stopped bleeding. A total of around thirty two hours.
Today I'm feeling great. I have plenty of energy from the new blood and I can cough now without blood coming from my mouth and nose. It's not a taste you get used to.

I woke this morning to a temperature of 38C. At 38C I'm supposed to go to the emergency dept.
We waited for another half hour or so and it slowly dropped. Phew!
Dr D'Souza spotted me yesterday while in the day ward and said "now you are going to get through this without any dramas aren't you!" I assured him I would. Not that I have any control over my bodies choice of infection. We all realise that I can't afford another major infection, it will almost certainly kill me.

All I can do is keep away from other people, wash lots, and keep taking the GCSF injections to stimulate my blood counts.

Today I have a friend coming over to work on my Evo's exhaust system. It seems so strange that here I am a person who has spent thirty years building high performance exhausts and now I have to sit in a chair and give instructions to someone else. Such is my poor level of fitness.

On that note I do feel a lot better these days, even just since last weekend. My cough is better and my feeling of well-being is vastly improved.

..Later

Blood:

This probably isn't the nicest thing you'll read all day, But I feel like venting my frustrations and because this is my forum for such things, Vent I shall.

Seven years ago at the start of my treatment for Hodgkins Lymphoma I suffered a serious side effect from my chemotherapy, my bone marrow was depleted so badly from just one infusion of ABVD chemo that it failed to regenerate and I was left with what was considered at the time a seriously low platelet count. I remember the counts were around the mid twenties and the doctors were all quite concerned as the normal rnage is 150-400.

I personally believe that I was given an incorrect dose of one of the four chemo drugs involved in the ABVD regimen I was undergoing. Possibly by a factor of ten. Recently hospitals have implemented new procedures to avoid this quite common mistake when dispensing medication whereby the decimal place is incorrectly/mistakenly placed. I however was completely ignored when I suggested this might be the case. The doctors preferring to believe it was an idiosyncratic episode unique to me. Despite their being no other documented cases of such a response happening anywhere else in the world. The net result was that all treatment was stopped for fear of loosing what working marrow we had left.

It was suggested radiation treatment would to be my only option. I declined. For the next eighteen months while I battled for continuation of the ABVD convinced I had been overdosed, I was in complete remission with no discernible signs of lymphoma. Not bad from one sniff of a supposedly relatively mild chemotherapy applied at the correct dose! (heavy sarcasm)

Anyway time moves on and I've gotten used to having a low platelet count. Platelets are the glue that binds blood together and stops bleeding. Without them, like water, the bleeding (leaking) would never stop.

There are whole support networks on the internet for people that suffer from low platelet counts Idiopathic thrombocytopenic purpura (ITP). Typically these people have counts below the normal range of  150-400 (refers something like 10 to the power of 9 per litre).
I've seen posts by people with counts of around 100 genuinely concerned at their "very low" platelet count and they start facebook forums to discuss their plight.

I haven't had a count over 50 in seven years. Usually it's mid twenties and it has never stopped me from doing any activity. I used to regularly motor race on counts considered too low for surgery. I just drove a bit more carefully. hmmmm come to think of it no I didn't!.

Anyway here we are today, platelet count "1" (read zero!). I had been getting two units of platelets along with whole blood twice a week for the best part of this year. When ever I returned to hospital in the following days for a blood test, my counts would be right back where they started. It became obvious that the transfusions were probably only any good for the few hours, maybe a day even following the top-ups.

I'm also on a drug that helps clotting called tranexamic acid. We have decided that in light of the fact that I have had no major bleeding events we will treat the low platelet count less and reduce the transfusions.

Right now I have blood trickling out my nose. It won't stop, it's been going for the last six hours, it's bloody annoying but what can I do? Nothing.. just mop up the red stuff into numerous tissues as I type and accept it as part of my life. I tried putting a plug of tissue in my nose but when I removed it there was a huge gelatinous mass behind it and that was even more gross than just letting the fresh stuff trickle down my face.

I have to be ultra careful about scratching or just picking at some innocent "thing" that might attract my attention. I can't just squeeze what ever it is that's on the end of my nose because next time I look in the mirror there will be a large purple bruise. Same goes for scratching an itchy arm or leg. I'm covered with hundreds of little purple marks from even the most innocuous attention.

It gets worse. Going to the toilet almost always results in a fairly worrying amount of blood being left in the bowl. If I didn't know what was causing it I'd be calling an ambulance!.

The doctors know the situation but what can we do? We are hoping that after a few rounds of chemo my marrow will start producing again. It's happened before, so there is hope.

It all makes a mockery of the "you can't have more chemo, you can't make us kill you" attitude of one oncologist (now retired) all those years ago. I guess now it's because if the patient dies, no heads will roll. Desperate times, desperate measures...

When I was in Germany getting treatment in 2008 I made a bus trip into the nearby village of Bad Tolz. While on the bus I was phoned by the hospital and told I must get off and wait for someone to pick me up as I had a platelet count of just 20 and was at serious risk of uncontrolled bleeding if I bumped myself. I wonder what they would say now to a count of 1?


I had the second part of the Gem chemo on Tuesday. I feel tired, worn out and pretty low. I know it will pass. I just wish the train wreck of an alien body I'm inhabiting would work, would put on some weight, would stop itching, would have some energy, would stop leaking blood...

..Ron

Up and down

It's been a hard couple of days, the high strength Dexamethasone steroid is now out of my system but it really makes you feel ill as you come down off it. Way worse than anything I've had with prednisone weening.

I had that really great day on Friday where all my vital signs were normal and I felt really well.
I haven't been so lucky since. Although my body temp has stabilised at a normal figure and my itch has almost completely gone, something I'm very pleased about.

I am however plagued by stomach aches and a feeling of being poisoned. All quite normal chemo side effects. Oh and the enlarged lymph nodes in my groin have reduced in size. Which is promising.

How much of all this to do with steroids and how much is chemo I can't say. Tomorrow is another chemo day but no steroid this time so I'll be able to get some idea of what's happening later in the week.

..Ron

Gemcitabine Cycle 1: Day 3

It's like Alice in Wonderland today.
I have the most unusual observation stats since January 2010.
My fevers have totally gone, In stead of running even a normal body temp of say 36.8C I'm chillin out at around 35.5 and feel totally comfortable. No need for panadol or nurofen to keep it under control and damage my liver.

My oxygen saturation which has been as low as mid 80's, where most people are 97-99, is today sitting on 97-98 with no external oxygen support.

But the biggest surprise is my heart rate. It's been banging along at 115-130 (at rest) for over two years now.
Today I managed to idle at 60bpm until I got excited when I saw the reading and it popped up to a still completely normal 70bpm. The two units of whole blood today will have helped there too.

I'm guessing that it's all possibly temporary and due to the high power Dexamethasone steroid I've been on since Tuesday. I don't want to get my hopes up about anything. However Dr D'Souza was very impressed with the stats and couldn't say for sure whether they were from the chemo or the steroid. I'll find out over the next few days as today was the last day on Dex. If every returns to it's normal, abnormal mayhem then we shall know it's all just steroid induced.

Wonderful though to have a heart rate that doesn't rev like a 2-stroke lawnmower for once. A body temp that's rock solid normal and some oxygen getting to my muscles!

A good news day! May there be many more!!   ..Ron

Gemcitabine cycle 1: Day 2

Nothing to report much over yesterday. Still have a stable body temp meaning no fevers or chills.
My itch seems to be slightly better for it too. Would be nice if it just faded away, but for now I'm assuming that the lack of sweating is the reason it's not so bad.

Very fatigued today, probably a mix of low haemoglobin and chemo. I'm suffering "chemo brain" too. It seems to take me ages to get thoughts out of my head and verbalise them. Doing invoices, writing emails etc is just painfully slow and full of typos first off. It will pass after a few months post chemo completion... hopefully.

Till tomorrow..  Ron

Gemcitabine Cycle 1, Day 1

Just a quick update of how things are after 24 hours.
I have no nausea so that's great.
The powerful steroid Dexamethasone which is part of the regime has knocked my daily fevers for six and my temperature has sat firmly in the 35deg range now for a day. This is great as it means no having to wake in the middle of the night to take paracetamol to avoid those terrible shivering fevers.
I only take this steroid for four days, so we shall see what happens from there.

So, so far so good, but way too early to see changes in the any Hodgkins B-symptoms.
Loosing the all over body itch would be the strongest signal that the drug is working.
We shall see how things go in a few more days.

...Ron

Day 0, First cycle of Gemcitabine

Yesterday as usual, was another flat out day in hospital.
Got to the day ward with Sarah at around 9:30am and had a line put in my left arm.
Thankfully that went well and the cannula slid in first attempt.
Next up two units of platelets so I could go into surgery and have a new PICC line installed without serious bleeding.
My platelet count was a new record for me "2"! Even the surgeon said he'd never seen one so low.
(That's around 1/200th of the normal level for a male)
The two units would have bumped it up to around twenty, enough to perform the procedure without too much bleeding.
So we then headed off to the theatre to get the new line put in. As usual for me and PICC lines it didn't go well.
After finally getting the line into position the surgeon decided that it was too tight in the vein and therefore posed a risk of clotting. He removed the new PICC line and started over again on my left arm. That went in quite easily, but as he worked on the left arm the right arm began to bleed again and a pressure bandage was quickly applied to the small hole in my arm where the blood was pouring straight from the vein.

It's left a lovely big bruise and an outline of the original dressing on my arm. Who needs tattoos?
Once back at the day ward we put in another unit of blood to keep my counts up.


Note the tiny hole in the middle that goes
into the vein and from there the PICC line
made it's way to my lungs.
(before it was scrapped)

Then back in again today where upon I received my first cycle of Gemcitabine. Along with more blood and platelets. So far so good. I'm waiting for the nausea to start. It may never come, That's certainly the hope. I guess I'll know by this time tomorrow. I have plenty of drugs to counter it, so not too worried.
There's other side effects like sore throats etc. But the worse will be the neutropenia (low white cell and neutrophil count) that could leave me open to life threatening infections. Sarah and I shall have to be super diligent. Neutropenic sepsis can kill you in a matter of hours.

I'll post again once I see any changes.   ..Ron

and still waiting...

They now tell me that I'll be getting me PICC line put in on Monday followed by the first cycle of Gemcitabine chemo on Tuesday. Almost two weeks behind schedule. I hope I can keep it all together till then, I been taking Lorazepam to help calm me down and help me sleep. It certainly helps me sleep! not sure if it does much for to relax me from this wired feeling. I tried an antihistamine today, didn't work.

Sarah and I got out and about in the Evo on Saturday. It was a nice sunny day and I was feeling good due to having two units of blood the day before.
I learnt that the tyres on the Evo need replacement. They are full tread and look brand new but are seven years old and have gone hard and have very little grip. I wonder how many people realise that tyres have a shelf life?

The new ones arrived today, very expensive!. I was lucky in that Sarah and I arrived back at the tyre shop before he had finished fitting the tyres and I noticed that one of the tyres was not round. It had about 6mm of run-out (wobble) when being spun on the balancing machine. I pointed it out to the manager and he agreed to order in a replacement for tomorrow. Had I not seen it I'd have had a shake in the car that just wouldn't go away.

Stopped off to take a pic on the way home from our drive around South Wairarapa.

Till next week...  Ron

a waiting game.. but for what?

Every day is an ordeal at the moment.
I'm either sweating profusely from fever, itching like a madman or wiped out from fatigue and slumped on the couch. Otherwise I'm in hospital getting more blood. There's not much else to my life.

It would appear that unless my haemoglobin is well above 105 then I'm barely able to function.
Maintaining that level involves a large number of blood transfusions.

I just want to start chemo. It was supposed to be today, but it's been put off by a week due to the infection scare.
I'll also need to get a new PICC line put in before then and have an ultrasound of my heart to make sure it hasn't been damaged by infection.

And even going on chemo offers me no promises, it's just the change that I'm looking forward to.
I get through each day now by focusing on the slim chance that this time round the chemo just might work, that I just might survive it and that maybe my insane itching will go away, even for just a while.

Isn't it typical that my hair has started to grow back after being gone for the last nine or so months just in time to loose it all again from chemo!  Oh well.
I grew a goatee beard for a couple of weeks, I shaved it off yesterday because it was too itchy and Sarah said my kisses weren't as nice.  aaaw it had to come off after she said that!  :)

Well I'm home alone today, Sarah has had to go into work to do some stuff. I've managed to cook my own lunch and I'm about to try and tackle the treadmill for a few minutes.
I'll be on oxygen and going very slow, but I think it will do me some good.

..Ron

Close shave with a new bug. Feeling better.

I'd been going downhill pretty quickly lately. It's bad enough dealing with the fatigue from a body that been ravaged by seven years of (..bad luck) chemo and radiation treatment let alone non-existent blood counts and lungs destroyed by pneumonia and BOOP.

Last weekend was a shocker! Starting Friday each day was worse than the day before. It got to the point where I would dread the short trip to the bathroom because it would leave me so completely exhausted upon arrival that I'd be on the verge of passing out because I could not get enough air into my system to maintain function.

By Monday I'd decided that something needed to be done. I'd run a high fever that night, something not too uncommon but when combined with the fatigue it rang a few bells.
I got on the phone to the Cancer Day ward and I asked if I could come in for some blood tests and cultures. They said they were too busy and to go through the Emergency Dept.
So Sarah and I packed for an overnight stay in hospital and headed off to Wgtn ED.

I always seem to get fast tracked when ever I go there (that's usually because I'm almost dead!) so no worries about waiting around with the great unwashed in the reception area ;)
The young haematology registrar that came to see me in my cubicle was Paula, someone I'd dealt with in the past and got on well with.
She knew quite a lot about me and I told her that I really just wanted some blood and some blood cultures taken to make sure I wasn't growing anything. Which it was!

That all worked well but she wanted me to have some platelets, which I didn't really need, before she would let me go home. I could have some whole blood but I'd have to stay the night. Considering I was due back in the morning for blood anyway it seemed to be fairly pointless spending a night in hospital just so I could have some blood a few hours earlier than scheduled and then falling asleep in a lumpy bed.

Next day Sarah and I returned to the day ward and sure enough my test results showed I had been growing a bug, possibly on my PICC line (the line in my arm used for transfusions etc). So a few doses of IV antibiotics and two bags of blood later and I'm now starting to feel almost human again.
I can move around the house without too much fuss as long as I pace myself. The PICC line will need to come out, they'll do that tomorrow after my blood transfusion.

I've asked the doctors that in the future my haemoglobin be kept above 105 and that if it looks like it may drop below that figure before my next appointment then it should be topped up.
Last weekend I had a count of 104 on the Friday but it was 84 by Monday. Little wonder I was fatigued, what little oxygen my lungs did manage to get in just wasn't getting to my muscles.
My heart would have to beat faster to keep up and that explained the downward spiral I'd go into from even the slightest effort.

Up until a year or so ago I used to sit in the big chairs in the Day ward, getting my blood or what ever it was I was in for and look at the other patients and think "gee that guys sick" or "gosh that poor lady doesn't look well" I'm fine by comparison. I'll be out motor-racing next weekend or working around the house.
Last Monday while getting my two bags of blood and antibiotics I lay reclined in my Lazy Boy chair
and looked around the room at the other patients... "That 80 y/o guy can't be that sick! look at how fast he gets out of his chair! lucky old coot! and that 40 something businessman over their with no hair, looks to be at least 65kg! fat bastard!
Funny how things change...   ;)

I've just completed having my left eye surgery done. The surgeon did things a little different than he did for the right eye. He injected a small amount of antibiotic into the eye. The result has been that the eye is quite puffy and is going to take a couple of days before my vision completely re-adjusts.
However even now it's amazing just how much the improvement is. I didn't realise that the real world was in HD!  ;)

The start of chemo has been put off by a week due to the blood infection. I should start the first cycle sometime around August 15th. If it stops this insane itch of mine it can't come soon enough! It's driving me nuts again!

Later  ..Ron

The battle ahead

Sarah and I met with the Haematologist today and we laid out the new treatment plan. I'm going down hill pretty quickly at the moment. Blood counts are appalling and the cancer is spreading. My lungs are a mess, so much so that they are stopping me from exercising enough to build any real strength.

Because of this we decided that in ten days I'll start on Gemcitabine palliative chemo that will hopefully clean up my bone marrow so I can start making blood again and also knock the cancer back hard enough that I get a fairly decent period of health.

There's one catch, I'm still so weak from my battle with pneumonia that if a catch any more bugs while on treatment they will almost certainly kill me as I'll have no immune system and no energy reserves to put up a fight.
I think it's worth the risk, I've never been one to shy away from a challenge and I can't go on treading water like I am now. Fingers crossed for the result Sarah and I are hoping for!

Forever the optimist I'm still getting my left eye cataract done next Wednesday.
I then start the chemo on the following Monday. I'm really, really going to have to be so vigilant with regards to watching for fevers (not easy when you run a fever everyday as it is!) and getting into hospital at the first sign of trouble. I've always said that I won't die of cancer but rather an opportunistic infection. I've got a real challenge ahead of me, probably the biggest of my life, and so little to work with. However if determination and previous close shaves count for anything, I'll be fine.

I'll update as things progress.   ..Ron

More deckchair rearranging on the Titanic

Again I must apologise for the long break between posts.
Almost every other day I've been in the Blood and Cancer Centre (day ward) getting blood in one form or another.
What that means is that on the few days I have free I tend to sleep in as long as I can, then get up, process my internet sales and collapse back to the couch with some oxygen.

First it was my platelets that were in short supply, I can barely rally a count above five or six on a good day. The transfusions are gobbled up within a day or two and then it's back for more.
Now my haemoglobin is doing the same. Dropping by about two points every day until I get to around 100 and am barely able to function.

Earlier in the week at the Blood and Cancer Centre I was promised two units of red cells because of my poor count of ninety ( I was wiped out, nothing to run on) But as the day unfolded it became apparent that there wasn't enough time left in the day to run both bags. So I said "no problem, we'll get the other unit tomorrow when I come in for more platelets (for my eye surgery that afternoon). But of course when they took my blood counts the next day I was above the cut off point because of the one unit I had the previous day! Result no extra blood, and me totally wiped out yesterday. So much so that Sarah and I were seriously considering going into hospital for a check, I was that fatigued.. barely able to travel the distance from the couch to the bed (four metres)

Today I cornered the duty doctor Vickie as soon as we got to the day ward and explained the dilemma. She agreed I could have two units today on top of my scheduled unit of platelets. We just got back home now and it's after 6pm. It makes for a long day, but at least I now have enough energy to write my blog :)

So it looks like my lymphoma is running full speed ahead at the moment. Bone marrow involvement and several large nodes in my groin that are about 40mm long by about 20mm wide. (plus whatever is hiding inside me)
Because I'm the sort of idiot that looks at total disaster and thinks "Now where's the upside in all this?" ..and then finds one. I've come to the conclusion that having the enlarged lymphnodes in my groin isn't all bad because now I have something visual to look at when we start my next chemo and if the chemo is working I'll know long before a CT scan is scheduled and results come through. 

I have an appointment on Thursday with the Haematology clinic and I'm guessing we will lay out a treatment plan then. At the moment I'm so fatigued I'm barely able to function. (This blog update is now taken me four days to write up to this point)

Last Wednesday I had the cataract surgery on my right eye. The result so far has been spectacular!
Although they chose to do my good eye first the improvement has been amazing.
Because of the risk of bleeding it was decided to perform the operation without the usual anesthetic.
Instead they just used eye drops to numb the eye. It was quite freaky laying there and literally watching my eye being cut open, the view being from the inside. I knew when he had taken out the old cataract because the bright light I has been rather fuzzily staring at suddenly became a soggy wash of light.
Then once the new lense was inserted the light instantly became a razor sharp image and I could see the filament and the ceramic base. Truly amazing seeing it from that point of view, and with no pain .. just a slight pressure feeling on the eye ball on the odd occasion.

The great thing was that I required no bandage on the eye, there was no bruising and the eye worked and felt fine straight away. It did take until the next morning for perfect vision to come into effect due to the pupil being dilated by the eye drops.
Next Wednesday I get the "bad" eye done and I can hardly wait to see the results!

In light of my current state of health some might wonder why I'd bother getting my eyes fixed. A case of rearranging the deck chairs on the Titanic? Well to me it's a quality of life issue, and seeing everything clearly certainly improves my quality of life.

The other thing I've done in the last two weeks is purchase my dream car. A Mitsubishi Lancer Evolution 6.5, Tommi Makinen Edition. This limited edition model of the Evo 6 is regarded as being the best Mitsubishi made  (and the rarest) and with me being a bit of an Evo enthusiast then what better to spend the money from the sale of my race car on!
This particular car is immaculate in every way has extremely low mileage because the previous three owners have never driven it in the rain, have always garaged it and it's not been used as daily transport. I would suggest that there would not be many examples in the world that are so pristine.

I first spotted this car twelve years ago at a motorsport event and I engaged the owner in  conversation. He told me how special this model was, how it was a NZ new example with all the factory "go fast bits". In those days (2000-2005) he used to show up at club events and enter the car against purpose built race cars.. and win!  I told him I'd own his car one day.
The car changed hands a couple of times and was then purchased by another local motorsport enthuiast. I told him if he wanted to sell it to give me a call. The rest is history. The sad thing for him was that he didn't want to sell it but he needed the room in his garage.

Once my eye's are all sorted I will take it out for a nice fast drive in the country, but not a long one.. don't want to put too many miles on the clock.  ;)

Down but not out. Life at home..

I've been home for just under two weeks now. I had been sent home two weeks prior to that but it really was too soon and I ended up back on the ward for five days after about a week at home.
Was a shame really because I'd put on a little bit of weight that I soon lost once back on the ward.

Oh well here I am, relatively mobile, but I have to take everything very slowly. No jumping off the couch and heading to the bathroom/kitchen/office without thinking.
I have to stand up slowly to avoid getting dizzy and then walk slowly, resisting my natural urge to move quickly. I'm capable of short bursts of movement but my body soon complains after about ten seconds. No it's best to take it easy, put on the oxygen and avoid the breathless, totally puffed consequences. I look like I've just run 100M dash otherwise.

Since getting the news that the new drug had failed completely (other than fixing my itch) Sarah and I have been in a bit of a funk. Every bit of news we have gotten lately has been bad. I've spotted Sarah with the occasional tear and red eyes when she thinks I'm out of sight. I really feel for her.
I've told her I believe she has it a lot harder than me, her pain will go on long after I make my departure and I really feel for her.

In the last couple of weeks we have pretty much covered everything about where I currently stand and we have looked at all the possible paths. I've accepted my situation and have no fear of dying.
I'm happy with the way I've lived my life and have no regrets. What does annoy me a little is that I won't get to be a grumpy old man, sitting on the porch in the sun with Sarah, enjoying a well earned old age.
I won't get to see my daughter walk down the isle or any grandchildren that may eventuate, I won't get to see my younger nieces and nephews grow up.
So I do feel a little cheated out of my old age, but I certainly have no regrets looking back.

Sounds all very glum doesn't it!  But it's not really. Billions of people in third world countries never make it to 51 let alone complain about it like it's a god given right.

On a more positive note..Yesterday Sarah and I met with Dr D'Souza for an overview as to where I am at now and it was a very good discussion. The three of us were all reading from the same page and although none of it made for a great read there were a few positives to come from it.
Firstly he agreed that I should concentrate on getting well and putting on weight. Then in about eight weeks we would look at trying Gemcitabine chemotherapy.
I mentioned a drug, Bendamustine, that my sister in-law Rebecca had commented on and although it's not a drug generally used for Hodgkins Lymphoma, some doctors in the US have included it to be used concurrently with conventional chemo for HL. He said he would look into it. It's a drug that was developed in East Germany during the cold war and was totally ignored once the wall came down. Now thirty years later it's been "rediscovered" and found to be quite effective on some cancers.

I'm currently having platelet transfusions every second day and red cells every two weeks. My bone marrow appears to be shot. It's certainly got a reasonably high level of infiltration of lymphoma.
That's a very bad thing. But Alwyn had no problem with me having transfusions for as long as it takes to be ready for further treatment. So basically it's just status quo and wait. We are getting a little frustrated at spending half of every second day in hospital though. But that comes with the territory, we just have to put up with it and be glad I'm still alive to complain!

We have faced the fact that no matter what drugs I get from here, I'm not ever going to make it to old age. Our biggest fear is/was that I may not even make it to Christmas, certainly that would be the case if I have another infection like I have just had, or if the cancer suddenly becomes more active. I joked with Sarah that if I don't live out the year I have to die on December 21st, the so-called Mayan end of the world. That I said would prove conclusively once and for all that the world does in deed revolve around me!  I'd die a very happy and smug little man.  ;)

Joking aside, What we have decided to do is once again re-focus on living life to it's fullest and ignoring the illness as much as we can. We did this two and a half years ago when we decided we wouldn't wait for me to be well before building our new house and look how much that paid off!
We have had a fantastic two and a half years in our slice of paradise. The alternative would have been hum-drum in rented accommodation.

So it's onwards and upwards with our plan to spend quality time at our little cottage at Foxton beach. I've sold my Evo race car (more on that later) and I have made plans to purchase my dream car, even if it's just to park it up and stare at it with a silly grin. Previously I'd decided not to buy because I felt I would be too sick to enjoy it.
I asked Alwyn if he was comfortable with me having cataract surgery to improve my quality of life My eyesight is so bad I can't confidently drive a car at night or watch TV at all without glasses. He agreed it was a good idea and said he would help out by scheduling platelet transfusions to fit in with the surgery.
So today I phoned around looking for an eye surgeon that could complete everything in eight weeks. I've done it but it took a few phone calls. I did enjoy telling the ones that said they couldn't even give me a consultation for months that I'd just have to spend my money elsewhere. :>

So if we are to focus on a positive outcome then the hope is for the palliative chemo to clean out my bone marrow of lymphoma and return me to a modest state of health for a period that may well be from 1-2 years. From there anything is possible.
Here's hoping I make it another seven years like I have done so far! (and another seven after that).

So the decision to sell the Evo race car wasn't too hard. As I've said earlier I had achieved all I set out to do and to continue racing when I can barely walk is just futile. There is nothing more I could have done in that car that would have improved on it's record. "Nothing left to prove" as some have said.
So to that end I listed it on Trademe last Saturday night and within 24hrs the auction had nearly one thousand views. On Sunday night I got a phone call from an unknown caller and chose to ignore it as I'd asked for calls during work hours regarding the car. I was however tempted to listen to the voice mail that the caller left and I was impressed by the way he came across. Certainly not a tyre kicker or boy-racer.

I returned the call and within a few minutes he had decided to hit "buy now" on the auction, the car "sight unseen". I was certainly selling the race car for a bargain in order to move it on quickly without hassle or the need to bargain and he leapt at the price knowing how much they cost to build otherwise.
The next day he came to visit, loved the car (who wouldn't!) and purchased all my spares and race tyres as well, making it a very tidy little sale for me and a huge bargain for him.

My plans are to now finish the Toyota AE86 as a classic Targa race car, I just hope there's enough time to get it finished and have some fun it it. It seems to be taking years to make progress.
Even if I never get to drive it again, once finished it will be worth a modest sum and Sarah will be able to sell it easily.

I've been given the weekend off from blood transfusions, they are going to see if I can make three days without one, ..love being a guinea pig! So it's off to Foxton Beach to pick up the keys from the agent's and unload some much needed furniture at the cottage.

Till next week  ....Ron

Four weeks on the Ward: An overview and my current status.

I've probably left my update on life on the wards a little too long, it no longer seems relevant with the passing of time.
However I should put it in writing so I have a record. :)

On Monday 31st May I was moved from ICU to the Haematology ward. I was placed in a really nice isolation room by myself, I couldn't have asked for better!. Total privacy and no body else around to make noises and disturb me. I'd landed on my feet quite nicely as far as accommodation was concerned.

I was however quite unwell and I had a lot of trouble just moving around. I still couldn't shift my body weight in bed and I could only sleep propped up and on my back. A trip to the toilet involved being lifted out of bed and placed on a commode chair that could be wheeled over the toilet.
It wasn't much fun and then you had to humble yourself and ask the nurse to help with clean up.
To be honest I always thought that I'd be embarrassed having to ask for assistance toileting but in fact I was grateful for the help. Embarrassment never came into it. Even when the inevitable accidents occurred.

As time passed I got strong enough to stagger around the room by myself and even move a bit more in bed as I was forever sliding down and needing to push myself up again to eat etc.

Some of the nurses were awesome, most knew that I was self medicating and just asked me what I needed. I would look after my low grade fevers with panadol as I saw fit and take medication for diarrhea if and when it was needed.
However one nurse had other ideas and treated me like I was unfit to look after myself. I'm sure she thought she was a doctor, however had she actually been a doctor she would have let me do as I pleased like my real doctors did.

I tried to explain to her that I'd been looking after myself for the last seven years and I would be doing so again the minute I walked out the doors upon discharge. None of it seemed to sink in.
One night she said I couldn't have panadol because it might mask an infection. I pointed out that as I was already being treated with IV antibiotics for infection and that I have historically run a low grade fever twice a day for the last three years, I wasn't about to suffer through the night with chills and fever just to make her happy (and me miserable).

She left for a while and returned to my room announcing that I was to be moved to another room as "they" need the bed. She then asked if I minded being moved? I said I did, but then why was she asking? it wasn't like I had a choice! So then she said they could move me later if I liked.
That really annoyed me as it proved they didn't urgently need the bed as she had stated. I think I'd just made an enemy by daring to challenge her.

However that was easily fixed the next day when I told my Doctors on their daily rounds that I would like them to make a note on my records that I could choose if and when I needed certain drugs. Problem solved! She now had to follow my requests, no argument.  :)

Life in a four bed room is all about compromise. You have to share the one toilet and try and keep your activities quiet, lights low at night etc so as to make life as easy as possible on the people around you. 70+ y/o Trevor in the bed beside me however took that to an all new level.
He had been admitted just a few hours earlier and had barely settled in when he pressed the nurse call button for attention.

Once she arrived he told her in a very loud voice that "someone" (me) had a radio on and it was very annoying. That someone was me and the radio was in fact my pre-paid TV. The volume was set as low as it would go and the speaker that resides in the remote control was placed on my pillow next to my ear. The nurse popped her head into my cubicle and strained to hear anything. She returned to Trevor and said that every patient had the right to watch TV and that the sound was set to it's lowest.

"Well how long is it going to go on for!?" asked Trevor. "As long as he likes" replied the nurse. It was 8pm, I knew I was going to have a right battle with this old coot. Next thing he's playing a radio on full volume as some petulant way of getting back at me while annoying everyone. I pulled back the curtain and asked that he turn it down and that I would set my TV volume to a level that was inaudible to him. I don't think he liked being spoken to face to face (I'd counted on that). Every now and then after that I'd speak to him through the curtain, making small talk. Always using his name as often as possible and he never bothered anyone for the rest of the week. Coward. Nuff said.

Do you remember the guy from my stay in 2009 that made annoying sanding and scratched noises all night long? I posted about it.. "A Tale of two Ronnies and a night in Geppetto's workshop."
Well what were the odds that the same guy would end up in the bed beside me after Trevor was discharged!!? It would be the middle of the night and all of a sudden there would be this sanding noise coming from his cubicle. I learnt to live with it this time. I was however very tempted to suddenly pull back the curtain and find out once and for all what it was that he was doing. I resisted.

Each day for the month I was there I got stronger and more mobile. I was soon able to make the short walk to the toilet and eventually even down the corridors. Then like now I relied on extra oxygen to help get me by. However the short walks were done without it. That was a real challenge.

For some time now I have suspected that I have a drug resistant strain of candida (thrush. From a weakened immune system and prednisone) and I had voiced this concern to one of my haematology doctors. He very much doubted that I did and said I would be dead if I had a fungal infection in my lungs. I tried to explain to him why I felt I had a drug resistant strain and that I did not think for a second that it was in my lungs. He resisted my attempts to have a culture taken and tested for drug resistance. Then after about a week of bringing the subject up I cornered him and explained exactly what my logic was. He caved in and agreed to have me tested.
It was such an empowering moment for me when he had to admit in front of four of his colleagues three days later that I was right and the lab results proved so. I punched the air declaring "Travis I was right!! you were wrong!!" his colleagues grinned while he stood there somewhat embarrassed. Win for Dr Ron!

About one week in I had another CT scan to check out my lungs and re-stage my lymphoma.
The results showed there was an improvement in my lungs but my lymphoma appeared to have not resolved at all. This suggested the expensive Adcetris drug had failed and I am now running out of options. It was the last thing I ever wanted to hear. It's a hard thing to admit but had I known this before my life and death battle with pneumonia in ICU the outcome may have been different. I don't mind admitting that I spent the rest of that day feeling more than a little depressed. But like always I soon refocused and devised a plan that I could share with my haematologist when he gave me the news officially.

It also meant that when I broke the news to Sarah I could do it gently and show her that I'd already moved on and was looking to our future and what options we had left. I think it helped. We had a meeting with Dr D'Souza the next day and because Sarah and I had already absorbed the news and prepared a plan for the future the meeting went well and Dr D'Souza agreed with our focus of getting as well as I could over the next few months and re-looking at palliative treatment options again then.

I was discharged to go home on June 7th. I spent most of that week eating all I could, trying to put back on some of the 8kg's I'd lost. I'd be needing that weight to help fight off any possible infection and to put me in a good position should we need to start more chemo anytime soon.
However I wasn't making any real progress with my health and it was decided that I should be re-admitted again just 5 days later. I made good progress over the next four days and although the Doctors said I could go home on the Saturday and stayed another day just to sure I was OK as it turns out I'm also battling a bit of bronchitis as well.

So here I am back home again, on oxygen, trying to get some muscle and weight back so I have the strength to fight the next stage of my battle.

I said to Sarah last night that this is the scariest situation we have been in since the battle began seven years ago. In the past there has almost always been a plan-B, a back-up plan that means that if it all turns to custard we still have another option. Right now it feels like we have none, I'm fighting with almost nothing in my arsenal, just a few long shot hopes of my marrow being OK for now.
I feel I've been painted into a corner. I have severe lung damage that precludes most hard line lymphoma treatments. I'm too weak to restart any sort of treatment anyway. My blood counts are appalling and I need a platelet transfusion every two days. This probably means I have bone marrow involvement but the treatment for that would be more chemo... ( along shot hope is that the bronchitis being a virus may be knocking back my blood counts)

Then before I we both got totally depressed I said to Sarah "Hey if there is anyone that can get themselves out of a painted corner it's me. I'll just build myself a set of skates with paint rollers for wheels!"  :) We laughed and moved on...

I have a meeting in the Haematology clinic next week. I'm hoping for a break, I think I've earned one.
Just a slight increase in my blood counts or news that my bone marrow is cancer free.. is that too much to ask?  ...Here's hoping!  :)

....Ron

8 Days in ICU : Part 2

I'll mostly skip over the day I spent in Lower Hutt hospital's ICU. Mainly because it was all pretty much a blur as I struggled to breath following the large amount of IV fluids that were poured into me on admission.
I do remember that I wasn't feeling too bad when they loaded me into the ambulance for the 25 minute drive into Wellington accompanied by two paramedics who specialised in the transfer of high risk patients.

I will however go back to one memory I had of the Hutt ICU. It was on that first day when I could hardly breath. They tried a breathing device on me called a C-PAP (Continuous positive airway pressure). It was a tightly fitting mask that strapped to my face (so it couldn't be torn off by a panicking patient) that responded to my breathing signals. If I gently breathed in it would provide a flow of oxygen & air at a greater rate, taking all the hard work away from me. Well that was the theory!! I would gently breath in and wham!!! my lungs filled to bursting point. I panicked and pushed out and the darn thing sucked all the air out of my lungs in a second.

It was terrifying! I'd been warned that it was uncomfortable and that it would take about thirty minutes to adjust but this was all out of proportion to the air supply I felt I needed. I think I said something like "take it off!, take it off" in a panicked state and the nurses duly obliged.

It was at about this stage in the proceedings as we entered the first night that the hallucinations started.
More about them later...

So once transferred and settled into the Wellington ICU on Monday things didn't seem too bad.
But the doctors were still waiting for the cultures to grow and indicate what sort of bug was in my lungs and blood. That took three days and although they were pumping me full of IV antibiotics, they wern't as it turned out the correct ones. So I was still getting sicker and sicker. I went from being able to talk and move in my bed to being totally helpless in just a couple of days.

I had to be lifted in bed by at least two nurses even if it were just a few inches. I had no strength at all.
I was breathing with the help of a "Hi-Flow" device that gave a constant flow of oxygen and air directly into my nose, it helped but I still felt like I was breathing CO2, there was just this terrible feeling of drowning.

I told Sarah that I felt that I could survive this, all I needed to do was keep breathing right?
Well apparently it doesn't work that way! My breathing was just a continuous series of rapid puffs.
 I figured that I could do that for 24 hours and by then the drugs would start to work and things would get easier.
However after staring at the ceiling for over a day concentrating on just that one thing, breathing. I was worse! I was now almost too weak to breath and what air I did get in felt like it had no oxygen in it at all.

I was seriously considering being put under and ventilated, I was just so very tired. This was by far the hardest thing I'd ever done. I imagined it was akin to climbing Everest without oxygen.

The nurses asked to put me back on the C-PAP machine and I initially declined, however they said this was a better machine than the one I'd fought against previously. I whispered that if they could set it as low as it would go and slowly increase the flow I would hold up my hand when I felt it was set right. This worked a treat and gave me the air I needed to go on. It gently breathed for me and I could finally sleep. Prior to that I had been to afraid to sleep just in case I didn't wake up. Not a likely scenario in ICU but then when your whole life hangs on a little plastic hose...

It was on the Wednesday night that things got really scary. I'd managed to drop off to sleep and was woken by the sounds of the emergency alarm and a crash team that had assembled in my room.
A doctor said to me "Mr Scanlan we have a bit of a problem, your heart is racing out of control and although you are at no immediate risk, if we don't slow it down you may suffer heart damage"
I looked up at the monitors that I'd asked to have strategically placed so that I could see them. Heart rate 220bpm and climbing!

Another female doctor said that she was going to administer a drug to my IV line that would slow my heart. "It would be uncomfortable for about ten seconds" She injected the drug and I was instantly gripped in what I can only describe as abject terror. Nothing I had experienced in my life had prepared me for those ten seconds. It felt like I died and in just a few seconds the lights would go out.
Ten seconds later and I felt somewhat normal again if not completely stunned.

We looked at the monitor.. 150bpm..160..170..200..220.  Oh bugger!!!
She said she would have to use the drug again (I forget it's name) and Pow! I'm stricken once again with total fear. Apparently it interferes with the electrical signals from the brain and even though you know what's about to happen nothing you do will stop the feeling of terror that pervades you.
I stare back up at the monitor... 120.... and steady. I don't remember much after that. I imagine I would have slumped back to sleep completely exhausted. No explanation was given for the cause and it did not thank goodness occur again.

Now those hallucinations...I'd been running a high fever on a number of occasions and that coupled with lack of sleep was causing me to have both aural and visual hallucinations. Some of them were quite spectacular, a wild west steam train that ploughed it's way out of the ground on a picturesque green prairie and rumbled past me in full HD was one such vision.

For entertainment all I needed to do was close me eyes, there was not the usual blackness but rather an alternate world of shapes, images and people. Voices filled my head, none made any sense and I certainly wasn't bothered by any of it as I knew they were harmless. Knowing their cause helped.

Sometimes I'd look out into the main ward from my room and watch the huge foot long insects crawling over the walls and ceiling. Ants were every where, tiny red fire ants that covered everything. It was kind of interesting, never knowing what would appear next. These hallucinations lasted right up to about day five. By which time the drugs had started to work and I was on the mend.

Eating was all but impossible, I'd declined a feeding tube. Sarah spoon fed me what little sustenance I did get. You all know my thoughts on hospital food. Besides I couldn't breath and eat at the same time and I know which one took precedence! The result was that I lost eight kilo's in that first week.
Muscle mass completely disappeared. On about day five I managed with the help of Sarah to pick up my mobile phone and send a message out to friends to say I was OK. The phone felt like a brick! I could hardly hold it. It was another four days before I tried again.

Toilet requirements were easy I had a catheter for urine and I have no idea how I got through eight days without a bowel motion, but I must have as I have no recollection of any such endeavors.
The following week up on the cancer ward would more than make up for that!

So by day eight I was deemed well enough to be moved to a conventional ward, in this case 5 North, the haematology and cancer ward. From there it was another five weeks before I found myself back home and on the very slow road to recovery.

In my next post I'll cover life on the wards...