30th Post – Update 19.09.2013

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Tomorrow I go for my 3rd chemo dose.  Tomorrow is also 3 months since my Mastectomy!  I now have full movement of my arms and no longer need physiotherapy.  I still do my stretches occasionally and regularly massage the skin around so that it doesn’t stick onto the muscle.  The skin was sticking onto the muscle after surgery, but I think I’ve got it mostly back to normal now.

The thread the surgeon used for my stitches were dissolvable stitches.  Bogus.  They do not dissolve.  They are still in me and are slowly making their way to the surface of the skin.  When I get new boobs, I’d like to have regular thread if possible.

I think my eyelashes and eyebrows are starting to fall out.  Too bad.

Tomorrow I’m doing my 3rd chemo.  My anxiety is bad when I think about having to do chemo.  I have anxiety because of my previous experiences with the chemo.  The past few weeks I have been dreading the chemo.  To help with the anxiety, my oncologist suggested taking Nabilone the night before I had my second chemo.  

Nabilone is marijuana in a pill.  I was afraid to take it.  I had someone volunteer to be a guinea pig for me and try the Nabilone and tell me how it was.  I hate being stoned, that’s why I was afraid to try the Nabilone.  So my guinea pig tried it.  The effects are very slow.  My sweet trusted guinea pig just felt tired for a few hours.  Then they slowly started to feel stoned.  But then they went to bed and slept it off.  I can’t cut the pill in half because it’s a capsule and is probably time released.

Anyways, I decided to try the Nabilone the night before the second chemo and then just go straight to bed so that I wouldn’t feel anything.  I thought that going to bed was the solution.  But the solution would have been to continue sleeping all through the next day and not gone to a public place. Instead I had to go to the hospital in the morning to get the chemo.

12 hours after taking the Nabilone, I was paranoid and in a public place.  And since I don’t like feeling stoned, I was scared, nervous, and getting even more paranoid just knowing that it was in my system.  My mind was blank and I couldn’t think.  I got to the hospital and I was expecting that I just had to do the chemo and then go straight home.

Instead, I was ambushed.  As I was waiting to be called in for chemo, a psychologist from the cancer centre came to talk with me.  I wasn’t really ambushed, it just felt that way because of the drug.  She wanted to sit with me briefly to just meet me and get the story on what has been happening with me over the months.  At the cancer centre there is a psychosocial oncology department so that patients can have someone to talk to about all the shit that’s happening.  I had asked to speak with someone there because I have been getting more and more stressed and I feel very alone in all this.  I had assumed that I would get to have a proper appointment though, and I certainly wasn’t expecting to have to talk about everything so suddenly when I was at the hospital for another appointment.  I couldn’t think at all and could only concentrate on the fact that I was there for chemo and that I was stoned and paranoid about it.  I asked to instead have an appointment with her later on when I wasn’t there to get chemo.

Then I was sitting there getting chemo when someone else came to talk with me.  I don’t remember who she was.  I just remember she wanted to talk to me about some stuff and was asking me personal questions in front of my chemo neighbours.  Whatever happened to patient confidentiality?  And whatever happened to leaving someone alone when they are paranoid on drugs?!  All I could manage to tell her was “Please stop talking to me.  I took Nabilone and I hate it and I’m paranoid.  I can’t talk to anyone.  Please stop talking to me.”  She understood.  I felt bad though.  I told the psychologist to “please stop talking to me” also.

So that was the second chemo run.  Instead of calming my anxiety about chemo, I just got paranoid about weed and people talking to me.  I give Nabilone an F.

They’ve set up my chemo to be 3 doses of one drug, and then 3 doses of another.  Six doses in total.  I saw my oncologist on Wednesday this week and I asked him if I could do my 3rd dose at the end of all the chemo in November, instead of doing it this Friday.  I asked if this was possible and if it can work well enough like that.  He said that we would just switch to the next drug now and not go back to the first drug, so then it would be just 5 doses in total.  He said he feels comfortable with doing this and isn’t worried about doing it this way.  He said that if cancer were to come back, then that one dose of chemo wouldn’t make a difference.  Let’s hope he’s right.  Maybe it’s because I don’t currently have cancer in my body that he feels comfortable with doing this.  But I’m glad that he’s confident about it being fine for us doing it like this.

He was asking me how my second chemo dose went and my physical reactions to it.  He seemed surprised that I was nauseous for a lot longer than the first time, even though I was being constantly pumped with tons of different anti-nausea drugs.

(I saw the psychologist briefly as well and I apologized for being stoned at my last chemo and for asking her to stop talking to me.)

I had been really tired for the whole previous week to this appointment, and I was super tired the day of the appointment.  After the oncologist appointment, I went home and slowly I started to feel less and less tired.  Also, my anxiety was lifting a lot.  I know the anxiety was about the chemo.  But I wonder if the tiredness was because of the anxiety.  Last night I slept long, but I wasn’t tired during the day today.  The anxiety is a lot less than it was, but it’s still there.

I really want to get over this anxiety as much as possible.  And since Nabilone is out of the question, I’m going with Lorazepam.  I think it is maybe the same drug that I was given before I got my eggs taken out for the fertility treatment.  If it is the same one or acts the same way, then I can handle it.  I’m going to take a mini amount tonight before bed, and then take a full pill tomorrow in time for chemo.  I hope it calms me.

I have 3 cardboard boxes at home with all the medications, IV fluids, bandages, syringes, etc that the home-care people use to care for me after chemo.  I was organizing it yesterday, and just the smell of the packaging and plastics makes me nauseous.  It doesn’t necessarily smell bad, it’s just nausea by association.  Maybe I should keep a bowl filled with soil beside my bed.  I bet dirt would smell awesome and calming after chemo.

So 5 doses in total it is.  That means November 1 will probably be my final dose.  Soon after that it’s my birthday.  For me, age 27 was the year of cancer and a lot of shit, but a whole lot of learning weird interesting things.  I hope age 28 will be a year of new beauty tits, newly grown hair, and the most awesome of awesome health that continues for years and years until I die when I’m AT LEAST over 80 years old.

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29th Post – ALMOST Halfway Done Chemo 17.09.2013

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If all goes as planned, I will be halfway through chemo after this Friday.  It will be my third chemo dose and I am so dreading it.  I WAS feeling pretty okay, but lately not so much.  So I’m worried that this chemo dose will be giving me a kick in the nuts when I’m down.  I guess that’s what chemo is all about.  It makes the body a shitty place and the cancer doesn’t want to stay or start.

My second chemo dose wasn’t better than the first dose, although they told me it would be.  They probably were tricking me so that I wouldn’t back out.  My reactions to the first dose were intense and didn’t last much longer than a few days.  My reactions to the second dose weren’t as intense because they were spread out for longer, but that means I felt awful for longer and couldn’t do anything about it.

After the second dose, I was puking for the same amount of time as the first dose.  And then I was flat out in bed for 4 days.  I tried really hard to get out of bed to at least sit on the couch in the living room, but I couldn’t.  Some friends were in town that weekend (because it was Labour Day weekend) and I was really looking forward to getting out and seeing them, but I wasn’t able to.  They came to visit me at my place, but I was stuck in bed and couldn’t be a host.

Because I was puking so much and got dehydrated after my first chemo, the doctor had the home-care nurses come give me a bag of fluid via IV for the days I was stuck in bed after the second chemo.  It didn’t help with the puking or nausea, but it kept me hydrated when I wasn’t able to keep water down.  It’s important to consume lots of fluid right after chemo so that you pee the chemo out faster.  I don’t know much about it, but that’s what they’ve told me.

After the second dose I was nauseous for a lot longer than the first time.  This time I was nauseous for 4 days and didn’t really get my appetite back until a week after chemo.  For the first few days I’m really sensitive to smells.  The smell sensitivity starts before I leave the hospital and is quite bad for the first few days.  For the 4 days I was in bed, I slept a lot.  I’d sleep, wake up for a few hours and then fall back asleep.

Time is going by quickly, thank gawd.  I’m surprised that I’m already almost halfway done this.  Even on the days that I feel like shit, time goes quickly.  This upcoming third dose will be the final dose of a certain chemo drug.  Then the next three doses will be of a different chemo drug.  This chemo that I’m taking now supposedly has harder side effects than the next three (but maybe they’re tricking me again).  This one I’m on now causes more nausea, weakens the immune system more, and causes the hair to fall out.

Surprisingly, I still have lots of my hair.  My head is shaved to about 1mm in length, but it is quite patchy and it falls out easily if I pull on it.  My armpit hair has fallen out and so has my pubic hair.  I still have all my peach fuzz, nasal hairs, knuckle hair, arm and leg hair.  Oh, and I also still have all my eyelashes and eyebrows.  I don’t mind if my eyelashes fall out because my eyelashes are blonde anyways, so I’m used to it looking quite bare when I don’t have makeup on.  But I would really like to keep my eyebrows.  If I had to choose, I’d choose eyebrows over eyelashes.  My menopausal facial hair has slowed down too, at least as far as I can tell. But those babies grow out of nowhere, so who knows if I’ll suddenly have a long chin hair appearing tomorrow.

My eyesight is bad.  For the past year I’ve noticed that my eyes probably need a light prescription of distance glasses, but I haven’t gotten them tested out yet.  And since chemo my eyesight is very annoying.  I could definitely do with wearing glasses all the time, but there’s no point in me getting my eyes tested yet because they will probably change once I’m done all the chemo.  I think I’ll probably need glasses afterwards, but I doubt I’d need as strong of a prescription as I could do with at the moment.

For at least 20 years I have wanted glasses though.  So I am looking forward to it (but not looking forward to the cost).  I look good in glasses!  Not as good in them when my hair is short compared to when my hair was long, but not bad.

I haven’t been bathing much lately.  I don’t have hair that gets dirty anymore and that needs washing, so that’s partially why.  Another reason is because I have a port in my upper right arm that I have to bandage up before I bathe because it’s not supposed to get wet.  It’s annoying to bandage up.  I wrap my arm in plastic kitchen wrap, but it still often gets a little wet.  Another reason why I’m not bathing much lately is because I no longer get stinky.  It’s amazing.  I don’t have body odour anymore.  Even without wearing deodorant I don’t stink.  I found out that chemo kills bacteria.  So I guess the chemo is killing any odour causing bacteria.

The bad side to this is that I don’t smell human.  For the first week after chemo, I smell like a mutant alien.  The chemo stench is oozing out of my pores.  At first I thought it was just me being overly sensitive to the smell, but my family has told me that they can smell it too.  It really doesn’t smell like a smell that could come from a living creature.  After the first week, I guess my body has peed out and oozed out enough chemo for that smell to go away, but I still don’t have a regular person smell.  Dogs are still nice to me though, so I guess I don’t smell completely alien.

The port in my upper arm is called a PICC.  They give me the chemo drugs through this PICC, as well as anti-nausea meds and fluids, etc.  It’s a tube that enters a vein in my upper arm and travels through that vein up my arm, along my armpit, over to the middle of my chest, then downwards a bit and ends at the top of my heart.  I’ll post a photo of it.  I can’t feel any of it except on my arm.  The insertion point was bruised from when they put it in, but now it’s healed.  There’s a tube and a cap on the outside of my arm though, and all of that is annoying to have on me.  The skin around the area of the tube is always covered by a clear sticker so that germs stay out.

The nurse comes once a week to change the sticker and clean around the hole.  For a few minutes while she does this, the sticker is off and my skin can breathe.  It feels so nice.  It feels super crazy nice when the nurse pulls the sticker off and it tugs at my skin.  It’s like a massage.  It is heavenly.  Then she wipes the area with an alcohol swab that stings, and then she slaps another sticker on and my skin feels like it’s suffocating again.  I am so looking forward to having the PICC taken out and have my arm to myself again.  I’m not allowed to swim while I have the PICC in, so maybe I’ll take my arm swimming in a pool once the PICC is out.

Up until a week ago I was getting about 5 hours of sleep a night and I wasn’t tired during the day.  A week ago it started to change and now I’m sleeping a lot more and am feeling tired when I’m awake.   I want to get out and do things and go visit friends, but everyone lives at least an hour away.  I’m hoping to go visit Montreal at some point though.  And this Saturday my sister is arriving from England to visit me.  I’ll feel like shit for at least the first few days she’s here, but then we can go out and do things once I’m past the shitty days.

My brother, his wife and kid may come visit as well.  I’m not sure yet.  Originally, I was avoiding kids because they often are carrying colds from their schools.  But my doctor has assured me that I’m not as susceptible to illnesses as much as I think I am because I’m taking a drug for the first week of each chemo dose that ups my white blood cells.  It’s called NEUPOGEN, and it’s now covered by OHIP.  So the doc said that I can hang out with kids if they aren’t sick and if they wash their hands before they see me, and then no hugging or kissing.

I have a wig that I got from the hospital.  I wore it for a few hours and then I stuffed it in a bag and left it there.  It smells like perfumey old people (which smells stronger on the days my sense of smell is overly sensitive) and it’s uncomfortable.  It looks fine, but it feels like I’m wearing a Halloween wig.  It’s not finished nicely on the inside as you may assume it would be.  It’s rough, itchy, hot, and smelly.  I’ve been wearing scarves tied as turbans instead.  They’re comfortable and soft, and warm but not too warm.  I ordered some proper women’s turbans online last week.  They should be arriving soon.  And I think I’m going to sew a turban in velvet once I buy the fabric.  The velvet will be nice and warm for the cooler weather.  And so soft!

Here are some photos of my PICC.  The blue string taped onto me is to show where the PICC line goes inside of me.  I just taped it onto me for the photo.  On my arm I cover the area with gauze and then a sock over top of it.  I cut my sock to use it as a sleeve on my upper arm and so I don’t have gauze showing when I wear a short sleeved shirt.  The sock holds it all down in place well so that the plastic cap thing on the PICC doesn’t get pushed around as much.

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28th Post – Dear 14.5-Years-Older Sister 04.09.2013

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To my dear sister who is 14 and a half years older than me.  Here is what you may be looking at when you eventually go through menopause.

Hair Growth

  • You’ll sprout big thick hairs on your chin and cheeks.
  • You’ll sprout lots of excess peach fuzz on your chin and cheeks.

Brittle

  • When your knuckles crack now, they crack with a BANG.  It almost sounds like a twig breaking.  SNAP!  Cracking fingers, knees, toes, arms, hips, it all sounds so loud and painful.  It feels okay, but the sound does make you a bit nervous.

Dryness

  • Your skin will get dry.  Not flakey type.  It will just lack any moisture to it.  Moisturizers won’t act the way they used to.
  • You’ll have vaginal dryness.
  • As for the sex drive, I don’t know because I have my mind on other things at the moment.

Craziness

  • You will see the line where circumstances and your rationale start to fade.  At first you’re able to identify that line, and you’re able to tell yourself that you need to shut up because it is you who is crazy.  But slowly that line begins to blur until you can’t see it at all anymore.
  • You will be very moody.  You’ll feel very sad, angry, or upset about things that you normally wouldn’t notice.

Melting

  • You will be melting at times.  You’ll suddenly get very hot.  Some Menopausos get really sweaty when they have this hot flash.  I don’t….so you may not either.  But it still is annoying even without the sweat.  A gel ice pack wrapped in a cloth is a good solution.  Canadian summers will suck.  Non air-conditioning will suck.
  • Even when you aren’t having a hot flash, you will be warm.  Everything will feel warmer to you.  Instead of it being the 18°C outside that everyone says it is, it will feel to you that it is 32°C.  This difference in temperature will be constant.  Plus the hot flashes.  I’m not usually comfortable in temperature lower than 25°C, but now when the summer nights suddenly go to 10°C, I love it and sleep naked with the windows open and sometimes with the fan on.

Brain Rot

  • Your brain will turn to mush.  You will forget everything!  You will forget names, people, dates, appointments, food, EVERYTHING.  You will walk to a room with a task in mind…Likely example: pick up 3 forks.  You will get to that room and after struggling for a time, you may remember to pick up 1 spoon, and if you are lucky to remember 1 fork.  But you won’t remember that you don’t need a spoon or that you actually need 3 forks.  You won’t remember to call friends or family back.  You won’t remember much from conversations you’ve had with them during this period.
  • You will forget how to spell.  Frustrating.  You will sound out words in your head like a Kindergartener, and still will have difficulty with their spellings.  Google is fantastic for this.

Sleeplessness

  • You will be wide awake.  You may have always found it difficult to stay up all night long, but not anymore.  You are now awake constantly.   You may fall asleep finally at 4am, 5am, or 6am.  You will still probably wake up at your normal time in the morning though.  You are lucky to get 5 to 6 hours of sleep a night, and don’t count on that being constant sleep.

Mine is a medically induced menopause, so perhaps I’m getting all the gunky stuff at the same time.  Perhaps a more natural approach to the matter will wash symptoms out a bit more and over time.