A sparse update

I feel I am a walking body of chemicals. A slow walking body of chemicals. The treatment went okay today. The nurse was great.

I consumed over a dozen tablets for all sorts of different things, as well as getting drugs intravenously.

I'm tired, but that's not new. I feel a bit off, but my body isn't used to getting so many chemicals. I spewed once, which was most unglamorous but I'm not generally glamorous anyway so that's okay.

No interesting observations for today.

All I want for Christmas is a pill-box

It has come to my attention that in my previous post stating things had been cleared up and I would be receiving BEACOPP, I didn't include when that was going to start. It will indeed commence tomorrow, Monday the 30th November. So Monday to Wednesday this week I will go to the RAH, then again next Monday. Then wait/recover for 13 days till Monday 21st and get slogged again.

Tomorrow I will receive doxorubicin (our swivel preventing friend) and cyclophosphamide (related to mustard gas) by intravenous infusion. I will also get a dose of etoposide intravenously. I will get etoposide on Tuesday and Wednesday as well. Etoposide is exciting. It is derived from mandrake root and its mode of action is not clearly known. Oh. That's a comfort. They know this kills cells but are just not quite sure how. I feel I am entering medieval times.

I will also start taking procarbazine and prednisone tablets tomorrow. Procarbazine inhibits the synthesis of DNA and RNA so cells can't divide and I'll take that for 7 days. Prednisone is a corticosteroid and I will need to ask exactly what this is for.

I will also be given a drug called mesna to prevent the inflammation of the bladder that cyclophosphamide may cause. And allopurinol to assist my body to clear the destroyed cells. And pegfilgrastim to aid in the recovery of my white blood cells. Lucky Maesie has told me she will give me a lollypop and a glass of water because I think I'm going to need them.

I'm going to have to take all this to the chemist and ask them to make me one of those press out packs so that I don't get in a muddle. Or maybe I'll just buy one of those pill boxes with the days of the week. My nanna-ish tendancies are about to hit all time heights.

Noisy streets

Yesterday Dave and I met with the consultant, Dr Giri, and Chris the clinical trials nurse. It was a helpful meeting and Dr Giri answered all of the questions I had written on my list. I signed up for the trial, had a blood test and an ECG then wandered up to Rundle Street for lunch. We went to Cafe Michael 2 and I had green chicken curry. It was delicious, as I already knew it to be.

Lunch was very normal which is one of the strange things about all this - most things trundle on normally around me, but I have malignant lymph nodes inside me. But it makes me think about what secrets other people have as they go about their business in the street. Perhaps not even secrets necessarily, but just not things that you share with strangers when really what you'd like to do is yell it out so people stop being normal and acknowledge something's going on. "Don't you know my mum just died?" "I just found out I'm pregnant" "I failed my exam" "My husband left me". It would make for a noisy street and would test those empathetic amongst us.

Some time in the afternoon, Chris rang to tell us that the randomisation process for the trial determined that I will receive the BEACOPP treatment. This is the one that I had been told about back at the start, but now all the mess has all been cleared up. There are seven drugs in the cocktail, as I listed in a previous post. I need to go in to the RAH on days 1-3 & 8 of the treatment cycle to receive the drugs intravenously and there are pills to take at home on other days. The cycles will take 21 days and there will be 8 of them.

I am comfortable being part of a trial. I've done a few in my time although testing the results of different mouthwashes on plaque is a bit different to cancer treatment. Being part of the trial will mean that I get careful attention and I think I will see more of Dr Giri rather than his underlings which, at this point in time, suits me fine. Plus it'll just be interesting.

Couldn't organise a piss-up in a brewery...

Well the prayers of the people have been answered today. I have not been affected by the chemo at all - because I didn't get any. It is a long story....

We had dropped the girls at grandma's and were on our way into the city with plans to get a few things done before my 12:30 appointment at the RAH. In the car, I received a call to say that I wouldn't be getting chemo today because they wanted to work out a few things regarding the trial before I started. She asked me if I had read the information sheet and I told her that the info had been emailed to me but that the attachment was corrupt and although I had replied to let the doctor know that, I hadn't received anything further. We arranged to meet at the hospital so she could give me the information sheet and talk things through.

Until this point, we had been working on what the doctor had told us back on the 16th - I would be getting a treatment called BEACOPP that required attendance at the RAH for eight days straight, followed by 13 rest days. I had prepared myself for that to start today.

When we spoke to the clinical trials nurse who was very helpful (a meeting which, incidentally, occurred in the corridor of the oncology clinic because there weren't any available rooms), we found out that what I had actually been booked in for today was a treatment called ABVD which is the standard treatment in Australia for Hodgkin's lymphoma at stage 3. The trial that they had asked me about participating in is looking at comparing the ABVD treatment with the BEACOPP treatment which is more common in Europe. If I choose to participate in the trial I may get allocated to BEACOPP treatment or I may get ABVD. If I don't go in the trial it is simply ABVD, you can't choose to have BEACOPP.

In addition to this news, we also found out that for BEACOPP treatment I would only need to attend the hospital on days 1-3 and then again on day 8. All the other drugs are pills I can take at home. For ABVD I need only rock up at the RAH on days 1 and 15 of a 28 day cycle. That's a hell of a lot different to eight days straight kids.

So, all in all it's been a bit of a balls up and we're a bit annoyed about it all, well, quite annoyed. It's just frustrating. We'd sorted the girls out, we'd told people what was going on, we'd prepared ourselves mentally and now we have to take a step back, think it all through again and come up with a new plan. All the while the months ahead remain unknown and difficult to plan for.

At this stage, and I really hope it doesn't change again otherwise David is going to clearly verbalise his frustrations to the hospital staff, I have an appointment with the consultant on Friday at 11 am. I will ask any other questions and let them know whether I will be part of the study or not. On Monday I will head to the RAH again to start treatment of some form (AVBD or BEACOPP) at 11:30 am.

Until now the RAH has been very good but this has spoiled things a little.

Poison running through my veins

Starting tomorrow I will be heading to the RAH to receive nasty chemicals in order to kill the cancer cells. Pity it'll wreak havoc on all sorts of other cells inside me. Usually if someone ingests poison you have to ring the helpline and go to the hospital so they can remove or reduce the effects of said poison. This will be the opposite. I will rock up tomorrow feeling fairly well and they will dose me up with a range of 'medicine' and likely feel ill once its done. At the moment I am set to receive 5 goodies tomorrow - doxorubicin, cyclophosphamide, etoposide, procarbazine and prednisolone.

In order to understand the artillery, I have dug out my pharmacology book from a box in the shed. You know those enzymes I mentioned a while back? Well, doxorubicin prevents one particular enzyme (topoisomerase II) from doing its job. Usually this enzyme helps the replicating DNA to swivel so it doesn't get tangled. Doxorubicin stuffs up the swivel and seizes up the cell replication. Voila, dead cancer cells. Brilliant. Pity dear old doxo can't tell the difference between cancer cells and every other cell that might be dividing at the time. This one has the unwanted effects of nausea and vomitting, hair loss and myelosuppression. Great.

Cyclophosphamide is a nitrogen mustard and is related to 'mustard gas' used during the War. This just gets better. This one has a pronounced effect on lymphocytes. Good, its the lymphocytes causing all the problems.

More about these another time.

As for me, I am mostly going okay. I have been a little upset today because its all a bit real and this treatment is going to mean that my troubles impact the lives of others and I don't like to be a bother. Now before you all comment to say I'm not a bother, part of me does know this to be true and that people are happy to help because they love and care for me, Dave and the girls. I do know this. If it were any of my friends or family I would do the same. But another part of me thinks its just a terrible inconvenience for all involved. And I suppose it is, but I guess I can't decide who chooses to be involved and that's not my problem to deal with.

It's just a swollen gland

This all started when I felt unwell during the first weekend of September. I was tired and achy and flu-like but without the stuffy head, sore throat and phlegm. I felt along my neck because that seems to be what doctors and mothers do when one is ill and since I am a mother now I thought I'd give it a go. Lucky I did. I felt a firm lump at the base of one side of my neck and had a look at it in the mirror and it was visible, which I didn't think it should be.

So I made an appointment to see the doctor. I couldn't see the doctor I usually go to, but I got in to see my 'back-up doctor'. He thought it was probably a virus. He sent me for blood tests. He rang me later that day to say my iron was low and that I should start taking iron tablets. Ok. Easy.

The lump seemed to go up and down a bit but maybe that's because I just kept poking it. On the 16th of September (Wednesday) I did the corporate cup after work, a 4.5 km run around the picturesque Torrens Lake. I struggled along and it was a bit of an effort to finish. Dave did the run with me and when we'd finished we went back to his parent's place for tea. During tea, about an hour after running, I had a little turn. My lips went blue, I was cold, I had the shakes. It was a bit strange.

After that little episode, Dave wasn't going to let me do the City to Bay the following Saturday and he made me go to the doctor again. I said let's not be hasty because I really wanted to do the run. I got in to see my usual doctor and she said there didn't seem to be any definite reason for my turn - just a mixture of things like low iron, low blood sugar etc. She said she wouldn't rule out doing the City to Bay but just to be aware that I could have a similar turn. She told me to make another appointment for the following week in case I needed it and to cancel it if I felt okay.

That was enough for me. I told Dave I'd see how I felt on the Saturday before the run and I'd decide then. We decided to do it. I was going to run with my sister (and Dave) which I was pretty pumped about. She was seven weeks pregnant and I had lymphoma and we got to the end running pretty much the whole way (it's 12 k's). Dave made it to the end too.

I ended up going back to see the doctor for the appointment I'd already made, not because I was still feeling ill but because I needed a prescription I usually have and had run out of. So I went, told her the run was fine and that I was feeling okay but that the lump was still there a bit. No worries.

Things kept going in their normal fashion. We went camping on the last weekend in September when it was freezing and rainy and windy. I cooked for a conference at Victor Harbor over the October long weekend. I went to work, took Maesie to dance practise, went to playgroup - the usual stuff.

But things still were not quite right. I still felt quite tired and lethargic, but what parent doesn't? I had sore shoulders, but I always hunch over. I still had a lump at the base of my neck, but it wasn't as big as before. Then some little things happened and I added them to my list. I had leg cramps one morning and I'd never had them before. I was occasionally aware of my heart/lungs. It's a bit hard to explain. I know they're in there but usually I don't feel them do their job but I had a few niggles, not really pains, that just weren't quite right.

Back to the doctor with my list. That was 5.5 weeks after I first felt unwell. She didn't really like the fact that my lump was still there and I had a list of strange things going on. She sent me for a chest x-ray, an ultrasound of my neck and a fine needle aspirate of the lump. The appointment for all that was 9 days after I saw the doctor, a Thursday. I headed down to the hospital and had the ultrasound first. During that I found out there was more than just one lump in my neck. The fine needle biopsy was okay. It looked like a snake had bitten my neck.

On Friday my doctor rang me to make sure I had an appointment soon - I had one for the following Tuesday. I asked her what it could be and that was the first time the 'L' word was mentioned. I asked what else - "Some kind of virus". On Monday evening my doctor rang again to tell me that there were abnormal cells in the biopsy and that she had organised some things to 'fast-track' the process. She had made an appointment for me to see a surgeon on the Tuesday afternoon and then if he agreed it was necessary, to have surgery to remove the lump in my neck on Wednesday. She also told me she would have to refer me on to a specialist. Things were getting interesting.

Anyway, to wrap it up, I had the lump removed, the results came back to say Hodgkin's Lymphoma and then I moved into the land of a million tests and started to become familiar with the RAH. My life is no longer what it used to be.

The body is a marvel

For a long time I have admired the human body. Not in a dodgy way, in a geeky scientific way. In Yr 13 I did biology for a bit of fun. At uni I did science as well as engineering, mostly for fun. I did biochemistry and pharmacology in third year and the more I have learnt about the way the body works, the more I have been amazed that more things don't go wrong with it.

Do you know there are sequences in cells that are triggered by a molecule attaching to a receptor on the outside of the cell? The molecule is on the outside, the receptor passes the message through the cell membrane to another protein, an enzyme, and then that one passes it to another and then another - sometimes 10 different proteins can be involved to just pass one message through. If one of those proteins is even the tiniest bit altered, it won't work properly. You're stuffed. But it DOESN'T. In millions of cells, enzyme cascades work just the way they should thousands of times over. Amazing.

Do you know that the enzymes have to be made and all they really are is carbon, hydrogen, oxygen, nitrogen and a few others - all those elements you learnt in high school chemistry? It's just that all the parts have to be in exactly the right order, made of the right amino acids, because they twist up on themselves depending on the charge of the molecule to make the right shapes and charges to interact with other proteins and molecules. Incredible.

A cancer cell is one which has just broken out of the system. The normal controls are no longer there. Cells usually know when they bump into neighbours and they stop. Cancer cells barge on through. Cells usually get old and get tidied up and recycled at the right time. Cancer cells keep on keeping on. You only need one cell to have the tiniest of changes to its DNA and it's forever altered and no longer fits in the finely balanced system that is the human body. I remember being intrigued when learning about cancer because it really is quite interesting. Now I have my practical and I am still finding it interesting.

In Psalm 139:14 King David wrote "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." I too praise the Lord because I am fearfully and wonderfully made, despite a few renegade cells.

Here's the rub

We journeyed through the maze of the Royal Adelaide Hospital this morning to attend the cancer clinic on level 7 of the East Wing. The doctor was a lady a little bit shorter than me and a little bit older than me (I'm guessing about the age). She had all my results - my heart function is fine, my lungs are what they would expect (a bit below average due to the low haemaglobin) and my bone marrow is okay. All of this was good to hear.

Not so good was the list of all the nodes highlighted by the PET scan. There's quite a number - in my neck, across my shoulders, in my chest, around my heart and a couple have snuck down to the groin. This all means I am classed as having Stage 3 Hodgkin's. I was expecting Stage 2 so the upgrade was an unpleasant bonus.

My new friend then launched into the impending regime. She wanted to start it this week but I requested a few days grace so that I can see Maesie through her dance concert. It would have been the perfect excuse to skip out of the concert, and I was tempted, but I thought it best I see dance through to the end.

Starting some time next week I will head to the RAH every day for 8 days to be dosed up with a cocktail of poisons; some featuring only on one day, others get a guernsey everyday. I will then have 13 days to recover before repeating the process. The first set will have 6 rounds. In addition to these I will have to take a drug to help my body process all the cellular junk that will be left in the wake of the cell-destroyers. My two little kidneys weren't made to process all of that....

Then there's a couple of other tablets I'm supposed to take twice a day for the whole time (I can't quite remember what these were - I will fill this gap later) and blood tests twice a week. I need to have a thermometer at home and if I feel a bit unwell and my temperature is above 38 oC then I need to go straight to emergency. If it isn't above 38 then just to the GP for antibiotics. No worries. I love the doctor. I love taking tablets. I love hospitals.

I never thought much about the lymph system...

It is with some trepidation I begin this blog. I realise it doesn't take much for a blog to fall below par however, for the following reasons I will give it a try:
1. for me, just to have a go
2. for those who know me and may wish to follow the interesting (or not so interesting) times ahead
3. for those who don't know me but might find themselves in a similar predicament.

So, it turns out I have Hodgkin's Lymphoma. I found out a couple of weeks ago and since then have enjoyed a CT scan, a bone marrow biopsy, a PET scan, a lung function test and a gated blood pool scan (heart function). A bit of discomfort, a few cups of watered down concrete to drink but all in all, not too bad. Tomorrow I visit the haematologist for my results and the proposed treatment.

Lymphomas are cancers of the lymph system. The lymph system plays a vital part in looking after your blood and in your immunity. There are lymph nodes in many parts of the body, the main ones being the neck, armpits, centre of the chest and the groin. Your spleen also plays a part in all of this too. For some reason, possibly a virus, cells in a lymph node freak out and decide not to play by the rules of the body and hey presto, a cancer.

If you were going to choose a lymphoma, I guess you'd take Hodgkin's. For one, it has a name - all the others are just lumped together as non-Hodgkin's. Another good reason to pick this one is that Deltra Goodrem had it and she's lovely so surely it can't be that bad :) Lastly, it is quite treatable and the chances of getting rid of it are good.

So, I'll see how I go with the blog and I'll see how I go with the lymphoma!