Tuesday, February 23, 2010

week 2 underway

So I am well into week two of this whole experience, and it's not really anything like I thought it would be.
Monday is my chemotherapy day. I arrive about 7.30, go through about 8 and then get started.
IV fluids, anti nausea drugs, then the chemo.
I always thought you would start puking when the chemo went in. you know, all sitting around puking together. But its actually a delayed thing. Now I have been lucky, no puking at all. Close a few times, but no puking.
Last week the nausea lasted 4-5 days. Just background nausea, like a hangover. I have 5 different drugs I take each day for nausea and I really do feel like a pharmacy.
I have to carry around a lunch box full of drugs with me everywhere I go just incase I need one of the many I have. Given that I know what all the drugs are for, and what all their names are, and how often to take them I have no idea how someone without a medical degree can keep up! I even have to have an application on my iphone to tell me when things are due. I just can't remember what I have taken each day and when!
I've even gone down the alternative medicine pathway for some things. I am giving acupuncture a go, and am wearing acupressure bands during the day. (I must admit, I did make sure there was scientific evidence behind it first - once a geek, always a geek).
Rob went away for the weekend, and I missed him a lot, but it was good for him to have a break and it gave me the opportunity to have some girl time with my Mum and Aunty Roisin. It was a pretty quiet weekend, partly because I managed to become a difficult patient (no surprises there really) and get myself a fever. Fever and chemotherapy don't really go so well. After 24 hours of regular paracetamol and keeping up with fluids it was still there, so then we started antibiotics. Which of course have upset my guts. Great. But at least the fever is gone.
When we turned up for Chemo on Monday I got the added complication that my liver function tests are becoming abnormal. And of course we have no idea why. When you are taking 10 different medications a day, are having chemo, have recently been through 3 anaesthetics, a cycle of IVF and had a fever its anyones guess. So now we are on official liver watch.
I'll get another swag of blood tests done tomorrow so that we have a better idea. Keep taking the antibiotics (caus it seems to have stopped the fever), stop taking the paracetamol and wait and see.
Each day I just have to take one at time at the moment. Try and be the patient and not the doctor and have a little faith (make that a lot) in other people.

Monday, February 15, 2010

Day 2 and going strong

We started. Whoop whoop.
On Valentines Day Rob and I wen tout for a lovely dinner. We were lucky enough to get a table at the French Cafe in Auckland - one of the nicest restaurants in Auckland. We had a fantastic 7 course degustation dinner. (Corn chowder with prawn balls, marinated tuna with asian flavours, seared langoustine with pancetta, goat cheese tart, Snapper with Lobster (for me, Duck for Rob), green apple sorbet and then chocolately heavenly goodness for me and raspberry soufflé for Rob). It was divine and we had a great time. especially as we checked out all the other dinners and tried to work out what their story was. It was a late night and then Monday morning a fairly early start. Suited me though. Less time to lie in bed, and I actually managed to get some sleep.

We got to the Hospital about 8.30 in the morning, and went through to start the chemo just after 9. I get a bed, a drip in my hand and then connected up to a pump. There are 3 beds in the day room, and a bunch of comfy chairs - which get filled up with patients pretty quickly. My first 2 room mates were David (Bladder Cancer) and Toni (ovarian cancer). They asked when I started and when I said it was my first day they stated making the its a new girl comments. They were very sweet and its quite reassuring having the company there from other people in a similar situation.
Before they give you the chemo they give you a bag of fluids IV (into a vein) with some salts and minerals in it. I reacted to one of those (magnesium sulfate) which made me feel as though I had flames coming out of my chest and mouth. It lasted for about 40 minutes while the fluid went in, and then gradually went away. The chemotherapy itself didn't really feel like anything. It made me feel a bit tired, but that was about it. Then more IV fluids and down to radiotherapy for my first treatment. I don't feel anything with the radiotherapy. It's a big room, with green laser beams coming out of the roof so that they can line up your tattoos with the right spots. Once you are all lined up they leave the room and the machine moves around you making whirring and beeping noises. then you're done.
Then back to chemo to finish the IV fluids. I had a couple of visitors which was fabulous and helps to break up the day a little.
We headed over to the main hospital to pick up a(nother) prescription. It's funny how many people you can see while you wait to pick up a script!
By that stage I was starting to feel quite nauseated, and apparently even I have paler shades of pale! who would have thought!
For the rest of the evening I just hung out in bed or on the couch. I didn't vomit, wasn't stuck in the bathroom perched over the toilet worshiping the ceramic gods, I just had waves of nausea. I have quite a few medications that I can take to help, but it still sneaks in there. I managed to get a couple of hours of sleep last night (which was pretty good, because one of the anti nausea medications makes you quite wired) and then back for a quick trip to radiotherapy this morning.
So I have felt better, but I have defiantly felt much worse. We are holding up really well emotionally, and are 2 days down. 4 or 5 more chemo days and 26 more radiotherapy sessions to go.

Thursday, February 11, 2010

3 sleeps

3 sleeps to go now. I’m not sure quite what I think or feel. Relieved? Sort of, because now we are starting to get the treatment going, but not really, because I know what’s coming… I think that being medical in this situation is worse in some ways, you know too much, people don’t explain everything because they assume you know what they will be talking about, and when they do say things I don’t really want to hear it. So maybe I feel anxious. Yup, that I do. We didn’t have the easiest week this week. After surgery I struggled with 4 days of nearly continuous nausea. I was sore, but the pain killers made me nauseated, and even without them I felt sick (and sore) after the anaesthetic. I really wondered if having the operation was the right thing to do. The thought of having the embryo is still so distant. It still has a long way to go. Having the nausea just from the anaesthetic I do feel quite anxious about the chemo.

Today I feel quite a bit better. We had to go to a medical oncology appointment this morning. It is quite surreal sitting in an outpatients clinic and wondering which of the registrars (that you have seen out drinking, or at a med school happy hour) will be charting your chemo. Luckily it was someone who didn’t train in Auckland, so I felt a little relieved.

It was more of the same stuff. You are likely to feel sick, your kidneys may take a hit, you may have decreased sensation in your fingers and toes, you may loose some of your hearing, you wont loose your hair… blah blah blah

In the space of 15 minutes waiting to pick up a prescription we saw about 10 people we knew through work. It was quite nice to see them though.

Again this week we have been blessed by the love and support of our friends and family. Getting to catch up with old friends, receiving gifts from here and from afar, we do feel blessed.

Despite all of the support, especially Rob’s support, I do feel quite alone in all of this. Every appointment we go to I am the youngest person sitting in clinic as a patient. I know that I am the one that is going to have to go through the treatment and it’s pretty scary. I don’t know how I am supposed to feel, or react, but right now I figure most things are pretty normal. There are a lot of support groups, even one called too young to have cancer, but I don’t really think I’m ready for a support group.

I got an awesome photo in the mail today. It’s our embryo, just before it was frozen. Seems crazy to get a photo of it, and for it to mean so much to me. But it does.

Alright, 3 sleeps to go. 2 more days of feeling pretty normal, 2 more days before we get to start treatment, 3 more sleeps.

Monday, February 8, 2010

a little bit of good news

not going to type much today. a bit too sore, and feeling a little bit sick.
I had keyhole surgery yesterday to pickup the IVF induced eggs. And my right ovary seemed to have been doing what it was supposed to. Whoop Whoop, 2 eggs. They took the right ovary out too, so that it can be frozen (although it can't be thawed in New Zealand. We would have to fly to the states or australia to do that)
My lovely anaesthetist (Jo) thought I would be too sore to go home and would have to stay in hospital last night. But I think I was more sore when I spent a day at snow planet failing terribly at snow boarding! So we came home last night. I spent most of the afternoon/evening just lying on the couch. I was too nauseated (and then sick) to do anything else. We might have to get used to me feeling nauseated for the next little bit anyway.
This morning I got the call I really wanted. That one of the eggs had successfully fertilized and was going to be frozen! Yay - the injections paid off and it was the little follicle that could!

Wednesday, February 3, 2010

another day closer

It sure has been a busy couple of days since the weekend.

Monday morning wasn’t one of my better days. I just didn’t want to get out of bed. Didn’t feel sick, wasn’t overly tired, just couldn’t be bothered getting up. Didn’t see the point. I just wanted to stay curled up, and cry a little. It got pretty boring pretty quickly though. By lunch time I had managed to convince myself that I was really not doing myself any good. That I would have a much better day if I got up and had a shower and something to eat. So I did, and I did feel a whole lot better. Good enough to go round to a friends place and have a beautiful dinner. We got to hang out with Rox and Jeff and their two beautiful children. I just love when I get to hold a small baby in my arms, and when it’s one of our best friends baby, and I get to call myself Aunty, I love it even more. Rob took along the video camera, which has been sadly underused over the last few years, and took some great footage of the kids. They grow up so quickly.

Rob went back to work on Tuesday for a bit, and the house was really quiet. Not because he makes a lot of noise when he is here, but just because it is so nice just having him here that when he isn’t I miss him. (pathetic, I know). So I decided to get out of the house, and had a lovely lunch and shopping expedition with Sash. I was running out of clothes that fit me, and had to go buy a belt and some skirts. I have now realized that Cancer does nothing to stop my desire to spend…… hmmmm, clothes….. Pity my shoe size hasn’t changed, or there would be shoes too!

A nurse from the cancer society came out to visit in the morning, and she bought more pamphlets (we have a lot of those now) and she was really cool. I get to go to this thing called look good, feel better. Basically a makeover and goody bag for women with cancer undergoing treatment. Such a great excuse to have a pampering session.

Wednesday was another appointment filled day, and another day dominated by pee.

It started with an 8am ultrasound (that requires a full bladder) to check on the IVF progress. Of course, despite drinking 4 cups of water before 8am, my bladder wasn’t quite full enough, so another cup and a cup of tea to get it all going. The IVF doesn’t look particularly hopeful at this point. I wasn’t as disappointed as I thought I would be however. So far I have made just one follicle (the bit that helps the egg develop) of a reasonable size, despite maximal IVF drugs, where they would normally be hoping for closer to 10. That one little follicle has a lot of pressure on it now. Maybe it will be the little follicle that could…… Time will tell.

After another blood test, we had our medical oncology appointment. The chemo adds about a 10% absolute benefit to the radiation (which is the main part of the treatment), but also adds to all of the radiation side effects. We got a good run down on those: nausea/vomiting/diarrhoea/fatigue/bone marrow suppression/loss of sensation in hands and feet/skin changes (similar to sunburn)/hearing loss/etc etc. I had to keep saying to the doctor (and lets be honest… to myself) well, if you have the side effects at least you are ALIVE. Isn’t that the whole point….

So during this appointment I was drinking a lot of water, so that I would have a full bladder for a simulation CT (to plan the radiotherapy) which was supposed to be at 2.30. Of course, me being me, I had practiced how much I needed to drink, and by when etc, so had it timed perfectly. I should have factored in public hospital delays…. By 3.20 when they did my scan I was pretty ready for a pee.

It’s when I have to undergo scans and procedures that I know I have cancer. The rest of the time I feel pretty good. But when I’m lying in a hospital gown, on a radiotherapy table, going through a CT scan, having radiation tattoo markers put on my body, I know it isn’t some big dream. I know its real, and I’m scared. And damn it I’m allowed to feel scared. I’m allowed to cry. I’m allowed to feel a little bit sorry for myself. And I’m allowed to get over it with a positive attitude, a bit of shopping and a hug and kiss from Rob.