Day of hell 2 eve

Anyone remember the dread I had before the last time I had chemo and PICC inserted on the same day? I think this is worse. I have that night before an exam butterflies feeling where I forget for a second and then remember and it hits me as if I'm hearing for the first time that tomorrow, again, I will have to have my arm cut and a 45cm tube inserted in my veins straight to my heart and then have 4 hours of chemo. Oh but this time I get the added fun of injecting myself in the stomach beforehand in an attempt to heal my right 'giant smurf' arm which is still huge and blue from last week's blood clot fiasco.

Chemo is the ultimate endurance test. Every week, two weeks, three weeks whatever, you have to walk into a hospital knowing that you feel perfectly well and by the time you leave you'll feel like death for 4 days. Sick, hot, sore, tired, out of breath and achey. Then you feel well and it's back in again. Round and round we go. For six months. That time feels a lot longer than it sounds. As well as the ultimate endurance test it is the ultimate lesson in appreciating your time. I love the times I feel well. Love the mundane tasks I am able to do. Love the feeling of waking up, hopping in the shower and heading out for the day (even if I do have to draw on a face and attach someone else's hair to my head first). Anywhere. Just not the couch for daytime tv and pills. Soon, every day will be like that and I'm sure, like before, I will be bored of those mundane tasks and will spend my days in search of something more exciting. Now though I will know that something extraordinary happening doesn't necessarily mean GOOD extraordinary and sometimes boring is just fine.

So as you can tell from my moan I am not looking forward to chemo #10 and my new PICC line tomorrow, nor is my arm improved much. I'm hopeful that by the time I recover this weekend my arm will be better, not fully but enough that my fingers work! By then, I will also be just over 3 weeks from what I hope will be my final encounter with Mr. Chemo. That hateful bastard. Then again, he is theoretically saving my life so I guess I shouldn't be too hard on him. Tough love. He loves me really.

Something good did come out of my 3 PICC free days - I've been happily soaking in bubble baths - something you can't do (comfortably) with an opening to you heart just dangling out of your arm (even after having it there for 3 months, the concept is no less bizarre to me so I can imagine how that sounds to the rest of you). So now, it's off to enjoy my last bath before my new tubular buddy gets inserted tomorrow and I'm banned from my bubbly tubs of heaven for another month until they take it out BEFORE I LEAVE FOR GREECE :) Yup, still determined that that's happening. I'll drive there if I have to. I'd say walk but with the pace I'm held to these days I have a feeling it would take me a year. If it comes to walking I'd probably give it a miss. Otherwise, I'm as good as there. Bald and smiling.

The day of the clot(s)

So yesterday was a fun day. I woke up and my right arm was twice the size of my left arm, numb and blue. Not pretty. I obviously immediately realised there was some sort of blood issue and drove myself quicksmart to the hospital. Ultrasound showed 'extensive thrombosis' throughout the vein that my PICC line was in. Basically, clots had formed around the PICC line from my shoulder to lower arm and into other nearby veins. Not a pretty sight.

Out came the PICC line and, after 7 hours being tested and prodded and poked, I walked out with another, yes ANOTHER prescription. This time it's daily blood thinner injections for 1-3months and then warfarin if 3 months of injections hasn't done the job. Oh joy.

Unfortunately, my uber-crap veins are still not good enough for even a blood draw after their 2 months of chemo beating before the PICC was put in and so there's no hope of me getting through my last 3 rounds without a PICC and so, on Tuesday, before my 10th hit, I will need to have another PICC inserted into my other arm. The injections should prevent the same thing from happening to this one.

So, in advice to anyone who has or will ever have a PICC line, the second it starts to feel heavy or just 'wrong' get it pulled. My arm felt weird for at least a week before this but I paid no attention as I had no specific symptoms to explain to a doctor. Very much like leaving my diagnosis for months and months before it eventually showed a physical symptom. Sometimes you just know your body, you know something's wrong. Make them keep looking until they figure out what it is.

Nobody's really saying what effect this new problem is going to have on my holiday (yes, this is still all I'm worried about). Hopefully the shots will mean that a flight to Greece which is obviously not long haul won't be a problem. The main thing is that there will be no treatment delay which is my biggest fear at the moment. I need these last 3 on time or my beloved holiday can't happen. The doctor who removed the PICC line laughed when I said this 'Oh I've heard about you, give me the last dose quickly I'm outta here on a plane'. Apparently most people wouldn't be crazy enough to go on holiday a week after their 12th chemo session? Personally I can't think of a better time. Except maybe 5 weeks after their last chemo session which what I will also do. And 4 months after their last chemo session and probably a couple of times in between.

After this, life will be a holiday.

Hair update

You'd be surprised how many people ask about this. Hair. Along with 'when can you start drinking again'. I'm not as surprised by the hair one as I am about people's fascination with me not drinking. I never really drank a whole lot before so it doesn't bother me. Also, do 5 months of chemo and see if YOU feel like pouring alcohol into your already sore mouth and queasy stomach. No thanks.

Anyway, all body hair completely gone. Very few random lower leg stragglers but aside from that it's bald as a baby. Actually, fairly sure I had MORE body hair than this when I was a baby (thanks Dad and your 'amazing hair covered human' genes). Eyelashes - I'm hanging onto my last ten or so for a couple of months now. Can't decide would I look more weird or less weird without them at this stage. Eyeliner helps make me look less like a snake. Eyebrows- need to be drawn on daily to make the few remaining hairs look dark and eyebrowlike. Head - I'd say I have 10% of my hair in patches, 0% in other patches. I am now sporting a very fashionable and stylish receding hairline look with some remaining fluff at the top and back of my head. Not a good look. For weeks now I've been torn between the idea of shaving off the remaining fuzz or just leaving it. I've gone with just leaving it. Not sure why. Maybe just so it can stick out and make me look insane. Who knows. But poor Nick. Wow. For those of you who are not fortunate enough to see it daily, here's my noggin post 9 chemo sessions over almost 5 months. A big smile both distracts from, and adds to, the hilarity of the baldness I find....

So there ya go, all you hair wonderers - that's what it's like.

Alcohol wonderers - no I still don't drink more than an odd glass of wine every week or so with dinner, I'm sure I could drink more if I wanted to but I don't and who knows if I ever will again!

Halfway through another good week. 4 days from another bad week. 6 days from chemo #10. 4 weeks and 6 days from magic #12. Ok I'll stop now, I'm even boring myself with these continual countdowns.

The mystery of the missing blog posts

I've just come on the laptop (as opposed to iphone) for the first time in a week and see that the two blog posts I've done on the phone since chemo #9 are not here....mysterious blog thief? Weird.

Anyway, there was nothing too exciting. If I remember correctly I wrote a post about old friends. This stems from the fact that during my last chemo session, a girl I was in school with and haven't seen in 10 years popped in with a card from her and some equally long lost school friends. Amazing to know they've been thinking of me and that she took the time to call into my treatment room! Unfortunately I was beyond out of it on drugs at the time and am fairly sure I made very little sense and was probably dribbling at the time, nonetheless, it was very much appreciated.

I also wrote a post about bouncing back. I seem to be bouncing back faster now, and feeling better on the good weeks than I was for the first 3 months of treatment (can't really believe I'm in my 5th month now. Time, she flies). I can't figure out why. I have a few theories.
1. Chemo is no longer working, I'm becoming immune. This one is far from likely. As far as I know. Can you get immune to chemo??!!!
2. I was feeling so awful because of my disease and not solely the chemo. So, now that my disease is gone (see how I've decided that it's gone with absolutely no evidence? That's positive thinking) I'm generally feeling better and healthier.
3. I've gotten so used to feeling completely utterly awful that when I feel 50% I think its 100% because I've forgotten what actual 100% feels like.
4. I've learned how to manage the symptoms so well that the worst of the side effects no longer get to that 'out of control' stage that makes me miserable.

Whatever the reason, I'm not complaining.

There have been some other developments symptom-wise. Firstly, I have almost lost feeling in the last 2 fingers in my left hand. I thought it was coming back last week but it has plateaued and I don't think it's ever coming back. Not until I'm far out of chemo anyway. I have also officially entered 'chemo induced menopause'. This, I'm hoping is not permanent. For the majority of people doing my treatment at my age, they will go back to normal a few months out of chemo.

Otherwise, I'm doing awesome. There are full hours where I don't even think about cancer, chemo, tumors, hair, nausea, hospitals. How crazy is it that I've obviously gotten so used to this life that it doesn't even register with me as noteworthy anymore?! My 2 weekly schedule has become one day chemo and indescribable horribleness, two days of minimal horribleness with extreme tiredness, 10 days almost normality with moderate tiredness. I live as normal the vast majority of the time which I would have never expected. Especially not after so many months of chemo, whatever about for the first month or so. I figured I would have taken such a beating that at this point I'd be bed bound! Nope, still kicking. Maybe just a little slower than before.

That said, I'm very much tired of it now. It's going on a really really really really long time. I want to get this PICC line taken from my arm. I want to be able to stop organising my life in 2 week chunks. I want to stop going to the hospital. I REALLY want my hair, eyebrows and eyelashes back. This day 5 weeks will, all going well, be my last chemo. Tomorrow 6 weeks, all going well, I'll be hopping on a plane to Greece. This time cannot possibly pass fast enough. Sigh.

Chemo #9

Blood drawn, I've been stabbed, sterilised, weighed and groped. Having a cup of tea and it's chemo time!

Good news:

1.I've put on no more weight (just the 30lbs then, that's GREAT- sarcastic interlude to the good news section)

2. mr head haematologist finished a conversation with 'you'll be fine'- a rare moment of hopeful sentiment which many people who have had a lot of interaction with medical professionals is on a par with spotting a pink toucan in the hospital costa coffee in terms of rareness.

3. The cause of my dead 2 fingers is unlikely to be neuropathy and my chemo doses can continue as usual

4. They can feel no lumps at all in my neck - no enlarged lymph nodes

5. There is no bad news, even rarer than the encouraging doc and the pink toucan combined.

4 hours from now I'll be 9 down and home for recovery. Today also makes 6 weeks to my final chemo - magic number 12.

New reality?

Recently I was asked by someone about to embark on the fun journey of chemotherapy how I coped with the 'new reality' I was faced with. How I could prevent myself from becoming resentful of friends and family moving on with the life that I had had pre-cancer that I wish I still had now. How I could process the thoughts of death, cancer, sickness, my appearance. How I felt about the fact that my body had betrayed me meaning I would never 'trust' it again. How I felt about having the naivety of my youth stripped away leaving only a harsher perception of a cruel world.

The answer, I just do.

The truth is, and this is something I have tried quite strongly to portray in this blog (sometimes, unsucessfully I'm sure) is that much of day to day life carries on as normal, with a few added unpleasantries! I chose not to work during treatments but many carry on working on the good days and from home on the bad days. Not working has been the biggest change to my life. This is obviously not a 100% bad change! Then there are the days that I'm in hospital or feeling crap after chemo. These will always be there, and are not fun. You adjust though. You learn now to cope with the effects and learn to deal with it in the way you would deal with a terrible 3 day hangover (albeit without the benefit of having had the fun night out!). Aside from this, over the last 4 months I've had a great time of lazing about, lunches, shopping trips, airplanes, dinners, dog walks. I've spent more time with my Mother and Sister than the 5 years previously combined, I spend each morning having a lie in with my snoring puppy until one of us wakes the other for brekkie. In a lot of ways it has been really nice!

I don't resent my friends. When I can join them I do, when I can't I can't but that was always the case. I've always been up for an adventure and will be again after this ordeal is over. Sometimes the best thing about an adventure is waiting for it to happen. I am also confident that, having experienced a life threatening condition, these adventures will be all the more exciting. If my friends can join me they will, if they can't they won't. Whats to resent? I don't feel like I've missed out on much of anything so far.

Dealing with the prospect of dying is going to have a positive impact on my future. Most people, including me, my age have the 'there's always tomorrow/next year/retirement' attitude. I no longer have this. If there's one lesson it's that so many people, of which I or you may become one, don't get tomorrow. Existing now to live in the future is foolish. One day I was thinking about this and asked myself, if I died this year, what would I regret having not done in my life? Next year, I will start doing these things one by one and constantly amending that list. I don't for a second believe that if I were to die in 5 years I would have nothing on my list, that's impossible. But, at least I'll know that I did what I could with the time I had rather than putting it off until 'tomorrow'.

My appearance? Meh. It'll be fine. Yes I look like uncle fester now, short fat and bald, but that won't last. Only poor Nick has to deal with it. Even I barely see it without make up and wigs. I'll put 'become good looking' on next years list. Easy.

My body DID betray me. It attacked itself. I am fighting back though, hard. Will I ever feel 100% confident that I can trust it again? No. In fact I'm sure that I'll be over analysing every twinge for as long as I live. But, what better way to stop me from becoming complacent again? Little reminders not to slip back into the rut of life.

Cruel, harsh world? No. The reach out I've had from people I had long written off in my life, the help from total strangers who will take the time to make me feel better, the way on the good days I can look around and think WOW I really want to be here for a really long time.... no, the world looks better to me than it ever did.

The new reality is going to be so much better than the old. I just need to keep fighting and hope I get the chance to live in it.

Mind over matter and peripheral neuropathy

Last Tuesday I had chemo number 8. Every hit I've had has been on a Tuesday (every 2 weeks) and every time it's Saturday before I'm up and about again. When I got the news that I in fact need 4 more hits (sounds so much more dramatic than 'treatments' or even 'chemos'...also, they feel more like hits than treatments) meaning 2 months, I decided I was going to have to reduce the number of 'bad days' I was having in every 2 week cycle. So, I decided to plan a full day of activities for the Friday and drag myself out of the slump one day earlier. Not only did I carry out the full day's activities which involved a hospital trip, shopping, lunch and entertaining for dinner until 1am (that's the latest I've stayed up in 6 months!!) but I did it all again yesterday staying up until TWO AM! Once again, mind over matter.

Number 8 seems to have passed relatively easy. I do have a new issue in the form of peripheral neuropathy. Well, I've always gotten slight neuropathy, but this week I completely lost all feeling in 2 fingers on my left hand. Remarkably annoying. It felt like they were asleep for 2 days and no matter how much I tried to shake them out the feeling just didn't return. Thankfully, they're back and have been tingling for 2 more days which should be the end of that. For now. I'll need to have a chat with them next time, I may need a dose alteration. Can't have me losing fingers.

I have a great week of activities planned so I just need to get through the next two days worth of bone pain inducing shots (oh how happy I was to be finished with those and how unhappy I am that I am still stabbing myself in the stomach with them on a daily basis) and I'll be free as a bird until number 9. Number 9 will be 3/4 way through. It's a little heartbreaking that I thought I was 3/4 way through a month ago but I'm not one to dwell.

My focus is on staying well enough to finish number 12 on the scheduled day (September 25th which is marked on my calender IN PEN which last time I checked can't be erased) so I have a chance of being able to go on my much needed holiday.

Some blog related news - this week we hit 50,000 views, added Fiji, Ukraine and the Philippines to the list of viewer locations and I seem to have attracted a reader who has decided I am a fake, do not in fact have cancer at all and am using this life threatening illness along with 'photo-shopped' pictures to build sympathy and publicity for myself in order to boost sales of my future book that I didn't know I was going to write. Oh how I wish you were right crazy lady. That would certainly make my life and it's associated problems much easier.

So, 50 days until my last fake treatment, 55 days until I'm awake after my last fake treatment, 59 days until my holiday. Let the countdown begin :)