The Last Post

Hello everybody, this is Sarah on behalf of Ron.  

Sadly this will be the last post on the Rusty Racer blog as my lovely Ron died on 2^nd February. His family were with him because it had become clear in his last couple of days that he wasn’t going to do his usual come back from the brink.
 

Since Ron’s last post the tear in his stomach had been repaired but he had become unable to eat solid food. His bone marrow was completely ineffective and his lungs just couldn’t take any more. 

I want to thank all of you for the support you have given Ron over the years. One of the joys in his life was the interest from all over the world in this blog. He took much pleasure in writing it and in the comments and support he received. His hopes in writing the blog were that it would help other people suffering similar illnesses. 

Regards, Sarah.

Stronger by the day

It's been a roller-coaster of a ride these last two-three weeks.
When I returned home from hospital on New Years Eve I was weak and very fatigued. Wiped out would have been an understatement!

The initial strong response from the increased prednisone seemed to have faded away and everything was becoming a struggle. My breathing was bad, and my energy levels so low that once again Sarah was having to do everything for me. Showering me, helping me dress and move around the house.
Things didn't look good at all. Even brushing my teeth had to be done sitting down or in bed and the act of brushing them left we puffed.

My weight has improved slightly, at least I'm no longer loosing it.
However my state of mind and body left me in no doubt that I was pretty close to loosing the fight.
Then early last week I decided to put up a "last stand" I started doing little exercises and pushing my limits where ever I could. (despite being advised by hospice staff not to waste energy) I walked very slowly on the treadmill each day. Extending the period from one minute, to five, then to ten minutes over just five days.

The improvement has been huge. I now find that I don't get as dizzy when I stand up anymore.
I'm more sure-footed and can move around the house a lot more comfortably.
To say I'm very pleased with this result doesn't do it justice. My goal is to be well enough to get myself into hospital for transfusions etc by the end of this month. ..and not need my wheelchair.

Last Thursday I even had enough energy to drop in on the guys at STM and show one of their mechanics how to use my old wheel alignment machine. I scooted around the workshop in my wheelchair and felt really good!

One new factor that may be influencing my current health improvement is that I'm taking Morphine for pain in my ribs and chest from torn muscles due to coughing. The Morphine not only reduces the debilitating pain, but it's also a cough suppressant.
So I'm coughing less, breathing deeper and not constantly depressed by the agony of torn muscles.
When you have chest pain like that you tend to shallow breath and this results in a higher risk of developing pneumonia. So it's all a bit of a win-win situation. I sleep heaps better too!

OK will update as things develop. It's great to post some good news for once!  :-)

..Ron

PS: Today's goal is to climb a flight of stairs. Then ten minutes on the treadmill at 2kph

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