Feverish Celebration

Well I made it until the wee hours of Monday morning (day 12) before the fever hit at 3am. It was low and I felt perfectly fine so I waited until 4 am to call it in. The on-call doctor said I could take my time coming in so I went back to bed and woke Mum up for 5am still feeling good. On the drive in I started to feel hot and sick and by check-in at Emerg at 5:45am I was almost passing out. My face was burning so hot that I had a bag of ice on it that my mother had to hold in place and the nurses had to change about 4-5 times because it kept melting that morning.

Emerg did the bloodwork and started me on general antibiotics while we waited for results and admitting. They had me admitted from Emerg into a bed in Hematology in an hour (awesome!) and that’s when they told me Id be there for a couple of “days”. I didn’t even bring a bag because I thought Id go in, get some antibiotics and be sent home in a couple of hours. That’s about the time I got “grumpy”… that’s not the word my mother would use, but her version is indecent and totally over exaggerated!

My neutrophils were .3 so no wonder I felt like shit. I slept most of the morning so I sent Mum home with a 3 page list of stuff to get and instructions on how to wash my laundry that I just had to have for my stay (apparently I'm a vicious dictator when I'm feverish) .

Did I mention it was my birthday? Did I mention I was dirty and hairy? With collection on Tuesday and I wasn’t feeling good Sunday night (now I know why) I had planned to take a proper shower Monday to wash my hair and shave my legs, in preparation for Tuesday. No luck! And of course everyone wanted to look at my legs to see if they were swollen, and wouldn’t take my word for it.

It gets better… bring on the ass exam! That’s right I got the same thing for my birthday this year as last year – sadistic or what! I guess a few days back when I got a little (a lot) dried up, I tore inside and that created a source for infection to get into the blood… “the body’s cell count is just so low it can’t handle its own issues” no shit!

When I set out for the hospital that morning I thought it might be a few hours – the routine fever. Get some blood work, antibiotics, go home. Nope I went in on my birthday a hot vicious laundry Nazi with hairy legs, a sore ass and greasy hair and in return I got an all-inclusive stay, antibiotics and an ass exam! Oh ya and cake… they gave me a piece of cake for lunch. It was a celebration after all.

Fever Watch

Met with a doctor (one of the randoms I now see in the BMT clinic) on Friday for my post-chemo follow up appointment on day 9 of my 14day schedule that makes up the Stem Cell Collection Phase.

Day 1 & 2 are chemo days (done) and then we wait 7 days while my blood counts steadily drop all the while taking injections to grow stem cells at the same time. By day 11 & 12 my counts are at their lowest and the stem cells are at their highest, so then we collect day 13 & 14.

BMT likes to meet with the patient on day 9 to check for fever and caution them to be on constant fever watch for days 10, 11 & 12 until Tuesday’s collection.

Apparently almost everyone gets the fever because their counts are just so low they can’t fight off any bugs. But it’s more about all the bugs and bacteria we already have in our bodies that will lead to infection and fever than the risk of picking bugs up from someone else. The body’s cell count is just so low it can’t handle its own issues.

Well I'm full of un-handled issues (ha!)... so I'm on fever watch:

Side Effects, Direct Effects… Cure Effects?

This past week it’s been all out about the side effects, which really in the grand scheme of things are not that bad.

I noticed yesterday that the itching behind my knees had stopped and that I have been able to drink more and more on my own again. The itching started up again over the Fall and I just knew that the cancer was active and that the next CAT would show growth; it’s always been my key symptom. Wonder what this means?

Itchy legs all night has been replaced with hot flashes. I have had them in the past from the lymphoma and a drug called Lupron that I take, but WOW are they back!!! It’s a burning heat that radiates from within that makes me want to chug a slushy and shove a Popsicle up my ass – anything to cool the insides of me down!

After chemo brushing my teeth is a miserable experience for days because the toothpaste tastes disgusting to me. I mentioned this to my Aunt and she was like switch the flavor – duh! I switched from mint to cinnamon OMG I can’t tell you how stupid I feel. All last year during chemo I would dread the days every two weeks when toothpaste made me gag twice a day, but never once did I think about switching the flavor. This is why one needs caregivers, you’re too stupid to help yourself sometimes!

I let my bowels get dried up again just like last time and have really hurt myself when eventually I did go. As the nurse put it, like passing a concrete brick – ouch! I'm taking a spoon full of aloevera juice every morning now that is sure to make things softer, but the damage is done. No one knows that this is the most common hidden ailment for people on chemo; everyone thinks it’s the puking – nope other end!

This blast of chemo really dried me up inside and out; and I'm used to combating chemo skin with an arsenal of expensive oils and creams, but I still peeled. My face has been peeling all week, especially around the eyes, which makes it impossible to put cover up on. It’s not like after a sunburn, more like the delicate surface of a fish when you touch it and scales rub off – really gross!

If anyone has anything to say about it I won’t know, I can’t hear them. A ringing started in my ears a week ago that wont let up. Sometimes it’s ringing other times it’s white noise (like static), either way it’s consistent. It’s starting to wear me down and makes every task harder when your head is a jumble of sound.

I lay around allot. Just waking up and getting breakfast feels like a marathon most mornings. And I have to remember to rise slowly to let my blood pressure catch up. It’s still very low and I have daily “faint” episodes that keep me horizontal. It’s getting better the more I drink on my own.

Cancer now has very little effect on my body, it’s the cure that’s affecting me terribly!

What's in your Designer Bag? A bag of Saline - you?

They wanted me to carry my bag of saline around in a fanny pack… I don’t thinks so! I had the perfect little Jimmy Choo bag that went with me everywhere because that’s where my bag of saline went with me – everywhere!

Day 3&4: looked worse than it was!

I think we did something really smart in that we followed a strict medication, foods & fluids schedule. With nausea and pain (I was still sore from the permacath) it’s important to stay ahead of the feeling by have the medication steady in your body.

Every morning my Aunt woke me up at 7 am to take my nausea meds with a bowl of oatmeal in bed. Then I slept until the next pill around the time the nurse would come and change my bag of saline. I didn’t feel like eating much because of the metal taste in my mouth, but my Aunt made sure I ate just enough and drank just enough at the right times. We also set my alarm in the middle of the night to take my pills. So I never went too long and I have to say this big bad blast of chemo went better than expected.

This type of chemo (DHAP) can be really hard on your kidneys so they order at home hydration for you for about 3 days after chemo. I stayed on it for 7 (plus I had already been on it for 3 or 4 by that point) because of blood pressure levels and I'm not a very good drinker after chemo. I knew Id never be able to gulp down the 8+ glasses of water a day required to care for my kidneys, so I stayed on the hydration to "puff" me out... I mean help me out.

Chemo Day2: 3hrs of something toxic in the morning, break for 5hrs then come back for 2hrs of something toxic that evening.

I slept for the morning chemo because it was an early start and then lay around the house for the afternoon until part two at 5 pm. I was tired, but not nauseous yet; I did have the metal taste in my mouth though. I don’t really remember part two except that I was starting to feel nauseas by the end of the day and asked for a Stemetil injection to be proactive; not a good idea!
I forgot that Stemetil is the anti-nausea drug that makes me feel strung out and twitchy like a junkie. It’s worse than being nauseous, because I shake, twitch and feel the need to pace the room like a character from TrainSpotting waiting for the dealer to arrive. It’s a miserable existence that you can only ride out once it’s in you.

Chemo Day1: 8hrs of “platinum”... but I'm worth it!

I took a wonder drug called Emend just before treatment started. It is the latest anti-nauseous drug out on the market. It cost me $130. for 3 pills (3 days). It was supposed to be covered but "surprise surprise", someone at the hospital didn’t put in my application soon enough, along with my Nepogen and so I had to pay for the Emend. It was worth every penny though!!! (but I'm working on getting those pennies back)

The chemo made me very hyper and I had trouble sticking to any one task (reading, movies, email) so I mostly socialized. Later in the day my legs felt like they were going numb, as if I had rubber bands tied at the top of my legs. There was nothing wrong with my legs and they looked just fine, but the sensation was really messing with my head and I kept getting up to shake them out. By the end of the day the sensation was making me a little crazy and I jogged on the spot for about an hour straight that evening at home watching TV.

How low can she go?

(just above coma - nice!)

I forgot to mention that I did have a little fainting incident on the way out of the hospital after my permacath insertion, but then again I'm a fainter so what else is new. I'm also a low blood pressure kinda gal, but this day my BP dropped to 52/65, normal is about 120/80 – my normal is about 70/100 if I'm lucky. So I Lay down had some toast and peanut butter and was sent home. On the way home I begged Mum to stop for chips, Pringles. I never eat chips, I'm a chocolate girl… little did I know my body was craving salt.

I ate the whole tube for dinner. In the middle of the night I got up to go to the bathroom and almost fainted again. In the morning I almost went down again when the nurse came to change my bandage, again with the low BP. So we called the hospital and they asked me to come in so they could investigate the permacath but really only found a fast heart rate and very low BP. The doctors decided to start me on hydration at home the following day.

A paramedic friend of mine suggested it might be something called a vagal response, which as something to do with the Vagus nerve getting compressed and lowering your pulse and BP at the same time which causes you to feel faint. I looked it up and the spot on the nerve is right above where my Permacath enters the artery in my neck. Maybe it’s pushing on that?

On the way home from the hospital I placed what was likely my 10th phone call in two days to the CT scan booking office asking them where my CAT scan was. They said they didn’t get the request from the coordinator (no shit) until the day before, but they could squeeze me in on the 12th. I asked her to read the part again about it being urgent that I have a scan before the 12th because I start chemo, and they asked me to come right over. So we turned the car around and drove back to the hospital.

I drank the contrast dye over the course of two hours prior to the exam but the technician couldn’t get a line into me to inject the dye. And they are not allowed to use permacaths for dye. I still did the scan, but I was disappointed that the scan will not be as detailed as it could be. When these things happen I feel so disappointed in myself, I can’t help it – damn my veins for giving out on me, damn my low blood pressure, damn my fainting, damn my cancer. The ultimate betrayal was the cancer, so I feel like my body owes it to me not to let me down with all the little things.

What does one boob, "happy juice" & Bob Marley have in common = A Permacath!

Today was relatively easy mostly because I just told myself it would be - and it was! There could have been lots of things to get concerned or wigged out about, but I chose to just roll with it and it was all good! I didn`t even know what a Permacath was exactly or what it would look like – but I gotta have it so who cares.
I did have some trouble getting an IV line in my hand. I told the nurse she should go to the last spot I have in my hand that gives blood but it quickly turned into credentials war ``I’ve been a nurse for...`` ya well ``I’ve been a patient for...`` and of course I lost the fight so three painful tries later we got a line in – in the spot I had originally suggested. So I guess I won the war... Id gloat but my hands are too sore to type much!

The surgery was orchestrated by a room full of male nurses and doctors - and my exposed boob! There was allot of prep and cleaning and then it all gets fuzzy. I do remember the flesh freezing needles, they hurt quite a bit but then the IV `happy juice` kicked in and everything was good or should I say ``everyting was irie``. It seems to me that the whole thing took about 10 minutes, but I don`t recall anything about those 10 minutes. It`s as if I am aware that they happened and I was present but I can`t remember a thing about that time. And in fact it was probably more like 20 minutes had passed but my perception of time is off too.

On the way out I was feeling pretty good and couldn`t stop singing ``I shot the Sherriff`` in my best Bob Marley voice over and over again. I guess it`s a successful surgery when you get a room full of men handling your gear and you come out singing reggae tunes!

On the way home it occurred to us that I wasn`t given any postcare instructions... with all that singing I forgot to ask. How am I going to wash around this hardware? When do these stitches come out? Who takes them out? The HomeCare nurse is coming tomorrow to change my dressing and flush my new line; I hope she knows... maybe if I sing her a little Bobby?