Oncology Update 4.0

So, the results from my last scan are in!…

Basically, the scan, which was only about 5 weeks after the previous one, showed that existing nodes are getting smaller, and the one node that was getting bigger in the previous scan is now static. So that is a whole heap of improvement with only 2 rounds of chemo inbetween scans. Of course, I’m still only half way thru chemo, ideally we would like to see them all shrinking, and with them gone by the time chemo has finished.

Each scan is apparently your average 1 years worth of background radiation, and I have had about 6 or 7 of them in the last 14 months. I get scanned every  6 weeks (or every three rounds) because of the drug trial I’m on, so all this information (and radiation) is a lot more than the average chemo patient gets.

Again, the radiologist concluded that it is ’stable disease’. That is a heap better than progressing disease, and less good than regressing disease.

Till next time…

Chemo 6.0 (half time)

The latest round of chemotherapy has been a bit of a mixed bag. The friday immediately after the infusion was pretty bad. The usual culprits played their parts, but it was the nausea that killed me the most. Saturday and Sunday were dominated more by fatigue than nausea, but nausea still played its role in there somewhere.

This round saw me dropping back the dexamethasone, and moving my nozinan to half a tablet each evening. The dex drives me up the wall with its side effects, and the nozinan is probably the biggest culprit with fatigue. I have had much less hungry episodes with the reduced dex dose, as well as sleeping better at night. I didnt take the nozinan on the Sunday evening, which has meant today (monday) has seen a lot more energy that I expected!.. I think i’m starting to get the hang of all this medication juggling!!

…although I will be having words with the oncologist about my friday nausea…

In a nut shell, that was chemo round 6. That makes me half way through all 12 rounds. But.. I can’t really call it the downhill stretch when the net result tends to be cumulative, the worst is unfortunately yet to come.

Also, my hair is seriously thin now. I’m trying to work out whether I should style it to cover up its thinness, or just shave it all off.

All this chemo every two weeks makes me really feel like I need a holiday….

Till next time!…

Chemo 5.0

Well, round 5 chemo has been and gone, and tomorrow I head back into the ‘real’ world. This round has been a mixture of improving and worsening side effects. On the improve was the nausea, no where near as bad this time round. I lay the blame for that on a new anti-emetic that I have been given, which, interestingly, I also blame for a worsening in my fatigue. Nozinan, is an anti-psychotic, part of the same family as haloperidol, which is used to treat psychoses in schizophrenia or mania. I am on 1/4 of a 25mg tablet twice a day, which means I’m not on enough to get the anti-psychotic effects, but enough that its anti-emetic effects work. The unfortunate trade off is that is a fairly sedating drug. So my tiredness could well be due to the new medication, or it could just be due the cumulative effect of chemotherapy slowly wearing down my body.

Nothing is ever simple….

This round also saw Hannah in Christchurch for the weekend doing a course in advanced paediatric life support, so she got to miss the miserable me, and my parents got have me instead.

A special shout out goes to Luke Malcolm whom last night came through on a tweet appeal for some food. With no energy and no appetite, its tough trying to sort out dinner for yourself, so I appreciated Luke coming round with dinner to keep me going.

Tomorrow I relaunch my career in psychiatry at north shore hospital, only to be put on hold again in 9 days time.

I shall enjoy my well-time while I can.

Chemo 4.0

So the 4th round of chemotherapy is all but over.

This round was a lot tougher than previous rounds, it took a lot more out of me, and took longer to recover. The cumulative nature of the constant bombardment means that this is to be expected. However, the reality of living with it is a lot less fun that just talking about it.

This time the nausea stepped up a notch, and tiredness did the same. Interestingly the diarhoea did the opposite. Hair continues to fall out, the lining of my mouth continues to ulcerate, and my patience with it all runs a little thinner.

Today marked the first day back at work again, which I managed okay with, and tomorrow will be even better. I’m going to enjoy my 9 days of sanity before the next round of chemo hits .

So that was chemo round 4.0, ’till next time…..

Oncology Update 3.0

I got the results from last week’s CT scan on Wednesday. Basically the news is sorta good, sorta bad. Which I guess on balance makes it somewhere in the neutral ground in between.

Essentially, the scan showed that some of the nodes that had been getting bigger are now getting smaller!.. thats the good part. However, the scan also showed that the biggest node in the previous scan has actually still increased in size, with another node remaining static.

This basically all means that I’m getting some response to chemo, but not a complete response. It also should be taken with a slight grain of salt in that I have only had 3 rounds of chemo in my system at the time of the scan, which is really just the tip of chemo iceberg that I will get overall.

The conclusion the oncologist made is ’stable’ disease, i.e. it is not progressing, it is not regressing. However, it doesn’t matter how much the cancer responds, its the one bit that doesn’t respond that will kill me.

Let’s hope it begins to respond….

Chemo 3.0

Today is day 4 of the 3rd round of the 2nd line of chemotherapy.

The numbers get confusing for a bit. But really the main point is 3 rounds are now done, and I am on the slow road to recovery and get maybe 10 days of health in before I hit round 4. So far this round has possibly been a bit worse symptoms-wise than round 2, but about the same as round 1. There is no doubt in my mind that so far this regime is WAY better than the regime I had last year. The oxaliplatin that I had last year just about killed me, and I still don’t quite have full sensation at the tips of my fingers from its neuropathic effects. At least I can take a pulse now, which is more than I could do 6 months ago.

There isn’t too much to update on this round really apart from just letting you all know where I’m at.

I have also finished my GP run out in Botany downs last week and start up at Whangaparoa Peninsula this week for 3 weeks. Its SOOOO nice to be spending my up-times doing some thing productive rather than getting bored. I have really missed medicine, and even though at times I feel completely stupid, it’s slowly coming back to me. I’m really glad (even though I’m also exhausted) that I have chosen to get back into it.

Until next time..

Chemo Round 2.0 (take 2)

I have successfuly managed to start round 2 of chemo this time. My white blood cells were a health 3.3, which is nicely above the 1.5 minimin I required for chemo to go ahead (particularly based on the trial I’m on).

The round so far has gone pretty smoothly. I’ve had the nausea under control a lot better this time, and havent had any problems with hiccups. I think just being a little bit more aggressive with the anti-emetics and controlling my diet a bit more has mad all the difference. This afternoon I will get the 46 hr infusion that I went home with on Friday take out, and then its all about the recovery before hitting it all over again in 2 weeks. Based on the first round of chemo, I anticipate being back to work on either Tuesday afternoon or on Wednesday, depending on how I go.

I also expect more hair to be falling out in about 2-3 weeks time… the question is, will I go bald, or will i just thin out!… we’ll have to wait and see .

So as of this stage, nothing too major to worry about.

Oncology Update 2.2

Just a quick update regarding my treatment on New Year’s Eve. I was due to hit round two of chemo, but my neutrophils were only 0.99, usually not enough to stop treatment itself, but because of the trial I’m on, the requirements state I need at least 1.5. This means that my chemo was delayed a week, and that I will be starting round 2 this coming Friday. The net result is that my chemo break between round 1 and 2 is a 4 week gap, rather than the 2 it should be, due to me being in Dunedin over the Christmas break.

So, there isn’t too much I can do about the situation other than sit back and enjoy the ride.

In other news, my hair has started to fall out. I wonder how long till I have none?… hmmmm..

Also, I start my final year of med on Tuesday. I’m starting off with GP out in Botany Downs for a few weeks.

I hope everyone is having an awesome New Years Holiday.

Jared

Chemo Round 1.0

My previous labelling of chemotherapy updates were under the assumption that there would only be 8 rounds, and did not anticipate the second lot of chemo that I am now undertaking. So, I’m essentially doubling up on my labeling, and we restart here, at chemo 1.0.

Chemo in the City

Friday was the magic day, and it essentially involved a 90 min infusion of a trial drug/placebo that I’m on on, followed by 2 simultaneous 2 hr infusions of Irinotcan and Folinic Acid (Leucovorin), and then a bolus of 5 Fluoro Uracil (5FU). I then get sent home with a slow 46hr infusion of the 5FU, which was de-accessed on Sunday from my port.

On the whole, when compared to my previous chemo regime, it was a pretty good chemo round. The biggest battle was incessant hiccuping, which is a manifestation of the nausea. So I’m gonna try and see if I can change my anti-emetic regime before the next round.

As of writing this, its the Monday after my infusion has stopped, and whilst I’m not feeling 100%, I’m already feeling MUCH better than I did yesterday.

Thanks to everyone for your support and prayers. The next round will start in 3 weeks since there is a 1 week delay because I am away over the Christmas period.

Christmas and Chemo…

Tomorrow I start chemotherapy again… for the second time. I’m looking forward to it about as much I would a hole in the head, but because this is the way the cookie crumbles, if I want to survive, chemo it is. This last week leading up to to it has had some absolutely amazing weather, and it has made me appreciate the enforced free time that I have had over the last year. I appreciate it a lot less when it is rainy and I’m stuck inside feeling nauseous.

My apartment has felt somewhat like a prison over the last 12 months. Hannah and I have considered moving a couple of times to a slightly bigger place, but with rental prices the way they are in this part of town, we can’t really afford or justify it.

This is the view of the Auckland sky tower we have from our place, a view that I am completely sick of. I’ve had to look at it far more than the average person would living in a place like this. And now, as I am about to embark on the chemo process all over again, I’m both weary, and appreciative.

Weary because its sucks to be feeling sick and miserable;

Appreciative because I’m glad that every extra day I get is one that I can spend with Hannah and with creation;

Weary because I’m emotionally shattered, and soon to be physically shattered;

Appreciative because I know I’m part of a plan bigger than me;

Weary because I know all this fighting for life will probably end in death;

Appreciative because I know death is not end of everything;

I’m increasingly discovering that life is a tug and pull between juxtaposing ideals and reality. The way we WANT life to be and the way life actually is. Sometimes we think life should be an ‘either, or’ proposition, mostly i’m discovering its a ‘both, and’ one. The good with the bad, the beautiful with the ugly, Christmas with chemo, and life with death. Each holds hands with the other, unable exist without the other, yet inexorably bound to opposition.

Isn’t that what grace is about? Forgiveness in the presence of unforgivability?

My life is slowly being polarised to either end of any given spectrum, great joy with great sadness, a ‘both, and’ proposition that I dearly wish was ‘either, all’. My wishing will however, be in vain, as life is never what we wish it to be, because if it was, our wishing would create a world with no contrasts. A world with no contrasts is like a world with no colour.

The beauty is in the contrast.

..

Thanks for listening.