Monday, May 20, 2013

Welcome back

Wow it's been a while since I did one of these, so long I can't remember when the last was. Or maybe that's my chemo-brain in effect.

Anyways not too much has been happening. Everything has been going swimmingly on the treatment front lately, I've been having chemo at the 3 week intervals as originally planned.
I have my next surgery booked for the beginning of July (more tissue removal and only in for the day) which means I should begin radiation early August bar anything being delayed or recovery from the surgery taking more time.

One thing that I am actually looking forward to is my final chemo this week. It will be nice to have these horrible drugs over with so I can move forward with the next phase, considering I should have been done with chemo at the beginning of April had I not kept getting sick I think I've handled it all pretty well.

I spent nearly a week in Kalgoorlie which was great for reinvigorating me, I've felt so isolated/alone and missing the rest of my family. I caught up with an old friend and learnt how to ride our new quad bike (yup we bought a quad, more on that soon). I spent time playing with my nephews and niece and teaching my sisters how to bake. In all it was just what I needed.

I'm going to leave it here for now as I will probably write another post later in the week.




Thursday, April 11, 2013

Sleepless in Secret Harbour

So here we are; it's 12.35am and I'm still awake despite going to bed 3 hours ago. I sit just me or does time seem to move quicker when your lying in bed not able to sleep? I was hoping I'd be able to have an early night tonight as I was up until 2am last night and awake at 8 this morning. That plus I have to be up at 4am today to take Chris to the airport isn't helping my situation at all. I'll most likely try and get some more sleep when I get home but I'm booked in to have my next chemo at 10am and I want to go to a couple of shops before that in case I feel like crap after.

I've been feeling well lately and hooray I wasn't hospitalised after my last treatment which was a nice break. But I've had an extra week off treatment this time (as with all my treatments for varying periods, one was even an extra 4 weeks off!) as my neutrophils (to do with the white blood cells and the bodies immunity to infections) were really low; like 0.9 on Monday and a normal persons is between1.5 and 7. So it's taken me a month to get to this point so I was doubtful when Dr Gan (my medical oncologist) said they would be up to a normal level today. Well waddaya know they're only at 1.1 today.

So naturally this makes me highly paranoid that I will end up back in hospital at some point in the next two weeks. I am seriously becoming a hermit for the first couple of weeks after treatment these days.

I've been truly amazed with the outpouring of kind words and support from the most unexpected of places; old high school acquaintances. The messages have been so lovely but their memories of me have really left me stumped, being told I had a kind face, lovely smile or friendly nature isn't how I remember myself or my high school experience. I always saw myself as the doggy looking overweight loner that people either ignored or made fun. I certainly never thought of myself as being these things that people have described me as. It's been a confidence booster so I thank you.

It's been fantastic having Chris home his last few swings off work. I'm laughing more and having more fun than I thought possible. Still feeling extreme amounts of guilt for all the work he does at home that I don't/can't anymore.

I attended my first BC support group this week and I chose to go to the one aimed for women under 40 as I'm struggling with the feelings I've been having of this making me into an older woman before my time. I had a lovely time and met some beautiful women who have given me a hope I don't think I had before that there will be life after cancer. I'm going to go again next month, my only gripe is its in Leederville and all this travel for appointments etc is starting to take its toll so I'm definitely dreading when the time comes for radiation and I need to go into the city each weekday. I feel for those that work in the city and do it every day.

As some/most of you know my friend Jamaine and I entered a cupcake competition a couple of weeks ago and won which advanced us to the grand final. This too has given me something to look forward to. Not only the competition but spending time with my closest friend. She's one of very few people who know me the best and I'm so grateful to have her in my life as well. Sadly my disease has opened my eyes to the fact that some of the people I counted as really good friends have backed away from me and its sad to see that happen. I realise friendships are two way streets so I am also to blame but I think a little consideration is needed for my situation. The good news is more people have stepped up than backed away and because of my BC I have reconnected with 2 great people and that makes me so happy. So to Rachel and Bethwyn thank you very much for making this sick chook  smile .

I think I'll leave this post here for now. It's 1am and I really need to try and get some sleep. I may add some more to this post tomorrow so stay tuned.

Xoxo
Kirby

Sunday, March 17, 2013

my bucket list

now don't go getting your knickers in a twist this is not me telling you all I'm suddenly terminal.

I'm writing these down so I don't forget and to give me something to look forward to doing in the MANY years I expect I still have left after I kick the cancers arse.

I may come back and add to the list as I come up with more things I'd like to experience but for now this is it.

1. Go skydiving
2. Travel through Europe
3. Go back to Bali and renew my vows with Chris
4. Learn to crochet
5. Make a quilt
6. Visit Las Vegas and New York
7. Take a photography course
8. Create my family tree
9. Foster at least one child in need
10. Donate more of my time to worthy causes

Sunday, March 3, 2013

jiggly bits

since I started this blog initially as a way to document my progress with my sleeve I thought I'd write another post today seeing as I haven't mentioned my weight loss progress in a while.

So here we are and I am a full 6 months post op now from my sleeve gastrectomy and I have as of this morning lost 39kg.

What goes along with this significant weight loss is a lot of excess skin hence the title of this post. I wobble now more than ever before and I still want to lose at least another 10kg!!!

I started this journey at 131kg with a BMI of 42.7 which put me in 'obese class III', I was sitting between size 20 and 22 clothing and because of my weight I was having issues with my knee joints.

I am at the moment 92kg, my BMI is now 30.04 which is 'obese class I' (only .04 to get into the overweight class', I am now wearing size 16 and 18 clothes and I no longer experience pain in my knees when I climb stairs.

I look forward to going skydiving later this year as I now come under the maximum weight limit.

On the flipside I feel severe shame in how big I let myself get but I share my story to let others that are unhappy with themselves know that they are not alone and they have power to change their life.

I have also come to the realisation that no matter what I think of other fat people and their size it is ultimately up to them how they choose to live their life. Through the help of a friend I have seen the hapiness and joy some obese people experience in their life without the shame or unhappiness of their size.

I think people need to realise that just because they have negative feelings about another persons body or life doesn't necessarily mean that other person feels the same way about themself. It's just like opinions, just because you have one it doesn't mean it's right.

keeping on

it's been a while since my last update and some stuff has happened since then, nothing overly interesting in the grand scheme of things.

I did my second chemo on the 24th Jan and got to spend the weekend with my parents, Carrie and the ever cute Jake. We had a great time catching up, laughing and having nerf wars. A good way to recover and cheer up from Jellys passing. I didn't get fatigued, had minimal nausea and was in a better frame of mind this time around.

Things got a lot worse from there though.

I was admitted to hospital on the 3rd of Feb with febrile neutropenia again, this time we threw in some anaemia, septicemia, clostridium difficle and blood pressure that bottomed out at 30/60 for a couple days. Same as last time, began feeling unwell and feverish and when I checked my temp it was above 38 which means I need to see a doctor as soon as possible.

Spent most of the first night in a exam room in emergency (the beauty of neutropenia is you get kept away from all the other patients) waiting for a room to open up in medical ward. Eventually moved at 1am and by that point I could barely walk on my own as my blood pressure had plummeted.

Now when this happens you need to be given a drug that contains adrenaline and they can only do this in the ICU at Rockingham so it was decided I needed to be moved. This also means complete bed rest to keep the BP stable so lucky me got to have my first catheter and I can't begin to tell you how weird it is to not feel the need to pee or even know when you're actually doing it.

So 5.30 in the morning with only a couple of hours sleep in me (they were doing my BP every half hour and nurses felt no need to be quiet when talking around me and I was trying to sleep) they transferred me from medical to high dependancy unit. They removed my PICC line shortly after and sent segments and blood taken from it for testing to see if that was the source of the infection (it wasn't) so I was back to having canulars put in.

They started me on a bunch of different antibiotics at once so I had 3 canulars in at the same time, right elbow and hand and one in my foot (my veins have all but collapsed).

They monitored my blood pressure for 24 hours to see if it would come back up on it's own but it didn't so I had a central line inserted into my chest Tuesday afternoon. Now if you are ever in a position to require a central line and the doctor assures you it wont hurt don't believe them for a minute. It hurts, from the needle of local they give you to the insertion of the wire it hurts. I think mine was more painful because the wire was scraping my clavical as it went in and I could hear it doing that but they still hurt being done.

Anyways once the line was put in my BP went back to normal before they even started giving me the drug, gotta love adrenaline. They started the drug and my BP stayed up from there on. The following couple of days were pretty uneventful, they slowly lowered the dose of the adrenaline, I developed c-diff from all the antibiotics I was on and I was still bedridden.

By the weekend I was able to get out of bed and sit in a chair and my catheter was removed. They were debating whether to move me back to medical ward or discharge me. Monday morning the doctors decided I was well enough to go home. So after waiting 4 hours for my discharge papers and drugs we were on our way home.

It was pretty boring for a few days after that, we stayed home and just Chris went out when we needed anything. Thursday was interesting though, we headed out to go get mats for my car and then we needed to go to Rocky CIty to get some dvds we'd bought online unlocked. While we were there I decided to check out a clothes shop that was having a sale. I'd already begun to feel unwell before we went into the shop and I really should have not been a complete dumbass and gone and sat straight down after I started feeling faint in the change room but I was a dumbass and waited with Chris at the counter as he paid.

I decided a bit too late that I needed a seat and the last thing I remember after telling Chris I was going to wait outside while he paid was turning to go out the door. I woke up on the floor after that.

This is what Chris tells me happened, I turned to walk to the door and didn't even take one step before I began to fall. The fan I was carrying dropped out of my hand first then I started to topple forward, my arm knocked a clothing rack on the way down and he tried to grab me but it was too late, he did manage to stop me falling completely on my face but I still whacked my face somewhere cause when I came too my upper lip was pretty sore. He says I wasn't out of it for long and when I woke I was surrounded by the shop assistant and a couple of customers.

All in all pretty damn embarrassing.

Needless to say I've been taking it pretty easy since then.

Just a few days later I was back at the doctors with what turned out to be a superficial thrombosis in my right upper arm. I've been having to do blood thinner injections daily since and will be on them until my oncologist says to stop. The clot cleared pretty quickly once I started the drugs and hopefully I wont be having anymore thrombosis.

I saw my oncologist last week as we had to delay chemo again due to the hospital stay and infection. He wanted me to either have another PICC line or a infuser port put in. Well he wanted the PICC but I didn't and suggested the port. I decided against another PICC as I want to be able to go to the beach and go out without worrying about having my arm covered so people dont see the big tubes coming out of my arm.

So in 2 days I am going in for day surgery to have the port inserted in my shoulder, this will be my 4th general knocking out since September and it still freaks me out a little.

Hopefully the healing from this will be quick enough for me to do chemo on the 14th as I will be 6 weeks behind schedule by then and I want to get this over with. The longer treatment takes the longer I'm off work and not earning. As much as I whined about not wanting to go to work being home all day everyday can be just as bad, made worse by the loss of my income.

The good thing about not having had chemo for 5 weeks is I'm feeling pretty damn good at the moment. I have more energy (still a lot less than normal due to all the inactivity), my sense of taste is almost back to normal and I just feel better overall. I even managed to do some baking this weekend which is something I have sorely missed doing for the last few months.

I caught up with my dads sisters and a cousin today which was great as I hadn't seen one aunt since my wedding (I think, chemo brain could be mistaken though) and the last time my other aunt and cousin we didn't really have a chance to catch up and I was still in shock from my diagnosis. It was great to sit around with family and just chat and hear about when my dad was growing up.

So that brings you up to speed. Hope it wasn't a case of TLDR, I know it was a long one.
Fingers crossed for less hospital admissions and fainting episodes in the coming months but then I wouldn't have much to blog about haha.

Sunday, January 20, 2013

goodbye Jellybean

I've felt like part of me has been missing this week and really there has been.

I got out of hospital Monday afternoon and spent the evening with Chris and the dogs. Jelly seemed fine that night but by morning she was a lot sicker. Chris had spent a lot of time up and down during the night with her and when I woke just after 7 she had been coughing for a while. (Coughing is a sign in congestive heart failure dogs that their lungs are filling with fluid).

Chris gave her extra medicine in the hopes that would slow her heart and begin to dry out her lungs but it didn't help so around 7.30 we decided to drop her at our local vets to be put on oxygen and for the vet to see her when she got in.

We had already discussed what we would do if she had another coughing episode so we knew in a way what was going to happen, we were just waiting for the vets confirmation. Around 9am Lucy (critical care vet) called Chris and confirmed our worst fears, Jelly had reached the point where medicine would do nothing more for her. We agreed we would head to the vets and do what we needed.

Waiting at the vets was almost as hard as saying goodbye, we decided to pay the bill before we went through to the consult room so that way we could easily leave. We had to sign a consent form for them to give her the drugs but I just couldn't do it, I felt like I was signing her death sentence (which it essentially is) so Chris had to sign.

We were taken through to a consult room to wait while they brought her in, she was still in the oxygen box and looked so sad. Her little heart was working overtime and her chest was pounding. Lucy pulled her out of the box and gave her to me and we could just tell she was struggling to breath and wasn't comfortable. We had a few minutes with her alone to say goodbye and give her hugs.

Lucy came back in after a while and told us what would happen and began administering the drugs. So we sat there and held our girl as her heart slowed and then stopped and she took her last breath, in all it was less than 30 seconds and her pain was over but mine began.

We stayed there and held her for a while longer and said our final goodbyes. Lucy was wonderful through all of this; giving us privacy when we needed it and we could also tell it made her upset as well.

Eventually as much as I wanted to stay there with her I needed to leave so we gave our beautiful girl to Lucy and went home and cried.

We decided to have her cremated and had already picked Lawnswood to come collect her and bring her home. Jelly was delivered home to us on Friday morning and the reality really sunk in that she is gone.

I don't regret the choice we made as it was best for her but I just wish I had more time with her, I feel like I was robbed of those 2 weeks because I was in hospital. It's been difficult adjusting to life without her. Gizmo and Millie are grieving, Gizmo especially has been very quiet since Tuesday and has mostly just slept the days away and refuses to play with Millie.

Jelly was such a big part of our lives and such a big personality. She loved to chase cats and play with Gizmo, she dominated a Weimaraner and took crap from no one. But she loved nothing more than sitting on a lap and having her ears rubbed, she always turned to putty when she had her ears rubbed. 

my beautiful girl

a photo from the shoot we had done in October 2012

in her jammies this last winter, cuddled up with me on the lounge
 

Wednesday, January 16, 2013

the not happy new year

No witty puns or remarks to be had in this post.

I spent my new year in hospital, 14 days to be exact.

On the 28th December our oldest dog Jellybean became very sick late at night so I spent many hours at Murdoch Emergency Vets with her. We were told her heart murmur had developed into congestive heart failure. Over the rest of the weekend I went back to emergency vets and our local vet after she had more trouble breathing.

I'd been feeling down (energy wise) since the Friday and I was focussing more on looking after my girl than myself but by Monday there was no denying something was wrong, I'd nearly fainted at the vets office and just had zero energy. By the afternoon my temperature reached 39 so I had to head to the hospital.

Now I thought it would be a simple case of doing a couple tests, giving me some drugs and sending me on my way but I was wrong. Turns out I was febrile neutropenic (fevers and no immune system) and that's not a good thing.

So I was admitted that night (New Years Eve) under the impression that I would be there a couple days (wrong again). Thankfully being neutropenic meant I got a private room, don't think I could have survived 14 days in a shared room. Neutropenia is where your neutrophils (to do with your white blood cells and immune system) drop below a normal level. Normal neutrophil levels are between 1.5 and 7.5 and mine were 0.05 when I was admitted.

Not much else happened for a while. I sat around for days while they tried to take blood and put in new cannulas, my veins in my right arm have all pretty much gone caput. So after a week of begging they finally relented and organised for the PICC team to come and put a line in my arm so no more needles.

I had a CT, chest X-rays, ultrasound and a gallium scan (2 trips to Fremantle in ambulances were required for this) and all came back with no result as to where the infection started. All in all they still had pretty much no idea what it was that was making me sick. By sick I mean I felt fine but was having regular high temperatures, on a good day I'd have 2-3 temp spikes a day and on a bad more than 4.

Anyway I pretty much demanded I be discharged on Monday as I had been feeling fine for a couple days and felt no point in being there another 2 days. So at 5pm Monday the 14th January I was finally released from hospital.

My hair began falling out on my third day in hospital so on the Thursday night I had Chris shave my head to reduce the stress I was feeling about it. We were meant to have our fundraising headshave BBQ on the 6th but I was still in hospital so we had to cancel that. My beautiful friend Thanh and Chris's stepdad Darren have both shaved their heads too.

Chris and I with our baldies

Darren - Chris's step dad

Thanh Le