Hair today gone tomorrow (hopefully?)

I've been pulling at my hair for the last 10 minutes.

I'm not even angry.

I was just checking to see if it's falling out yet.

Nope, not yet.

Which is normally a good thing.

Except for I buzz cut it last week in anticipation of it falling out, so now I'm obsessed with hair loss. And even though I was guaranteed that I'd lose my hair with my chemo treatments, what if I'm the small percentage of people that doesn't?

Wouldn't that just suck.

Bald by choice?

But I bought scarves and a wig. I've prepared and I'm ready.

I've made plans to be bald.

What is going on?

What?! Cancer doesn't care about plans?

Right, I knew that already. Ugh.

They said 7-10 days after my first chemo dose, my scalp would feel like it was sunburned, and within a few hours it would basically all fall out.

Today is day 11 after chemo and no sunburned feeling yet.

(Perhaps I should've walked more yesterday, it was a really sunny day)

In the meantime I am going to take *another* shower and this time srub my head vigorously.

Smile for the camera

I just realized that in a couple of months both my drivers license and passport expire.

Which is normally not a big deal.

Except for when you're going through chemo and your picture for your ID for the next 5 years will be one of you bald.

Bummer.

More hair loss - this time not by me!

I honestly don't need you to shave your head to show me that you love me.

So don't go home and shave your head for me :)

But, if you do it as a gesture of support, I will take it and blog about it!

Brad decided the best way to celebrate my new hair cut is by having the same one himself.

I guess copying is a form of flattery, right?

He came up with a great idea though, to get all the kids involved. We set up shop in the living room, took the clippers and got the kids to do the trimming.

There were squeals of delight as the hair started falling out in patches. The kids were having so much fun that we actually made a great family memory by shaving Brad's head.

Youngest went first. She was very sure of herself.

The others just sat on the couch and gasped...

Next kid up, first a bit apprehensive.

Then totally going for it and having fun.

Hard to tell who's more nervous, him or her.

Again, took no time to enjoy the process.

Last kid up. He takes his time.

Pauses to smile for the camera.

How excited are they?! Big grins all around.

When we were all done, they looked worried 'do we have to shave our heads too?'

After reassurance from us that they didn't need to, they happily went on their way.

Now, in our household they have both of their parent figures with shaved heads.

I guess it's the new normal.

As worried as I was (and they were) about me loosing my hair and the kids seeing me bald, this week has shown me once again how resilient and fantastic our kids are. They took it all in stride, and understood the deeper meaning behind Brad's gesture. Next time they see someone who is clearly suffering from chemo side effects, maybe in the store or at the park, there will not be that blank stare. They'll have a deeper understanding, a kinship towards them.

My kids make me proud every day.

Being their mom makes me want to beat this even more.

As for me and Brad, if you put our heads together, we may stick like velcro.

They say couples who've lived together for a while start looking like another.

We're proving that to be true.

Things are looking up

I think I'm on the mend.

Today, I don't feel like a 90 year old woman, I feel more like a 75 year old.

That shows improvement.

I'm cautiously optimistic that the pain will start fading, and the joints un stiffen soon and I will be able to walk on my own.

The first 2 days after chemo weren't really that bad, mostly I felt nauseated and crampy. Sort of like my worst period ever combined with pregnancy queasiness.

Brad made bacon for breakfast and I vomited. How's that for a 'thank you?' Not that I didn't appreciate the effort, but the smell sent me over the top.

Then, on day 3 my limbs started feeling heavy and stiff. I felt like I had just ran a marathon... yeah, as if that would ever happen. Still, nothing too disturbing, just sore and uncomfortable.

Until 10 pm on day 3. That is when it shifted from uncomfortable to unbearable. I felt the type of pain I cannot describe accurately. Deep inside my bones. Pain from the inside out. Everything hurt, even my teeth, my guts.

Day 4 remained the same, where I was immobilized still by my body. Walking to the bathroom became a field trip out of bed. It took two of us, and about 10 minutes to walk 5 steps.

This morning is day 5.

I woke up feeling a little better.

Like I said, less like a 90 year old and more like a 75 year old.

I walked to the bathroom all by myself.

That in itself is worth celebrating.

Whew... I have a round head!

We ended up having a lot of fun tonight, all things considering.

Losing hair to cancer is not fun.

Having your head shaved and having your friend take pictures through the process while getting a wig custom made for you was super fun!!

On to the pictures:

This is the "Before" shot - my 'regular' hair.

Here we go - first step.

I'm not happy with the chunks coming out.

Who's NOT a punk Rocker?!

All gone. G.I. Jane style.

Woah. Where did it all go?!

First try with the wig. Way too long.

And waaay too red.

I asked the wig lady to dye the front of it some more brown.

This is after the brown hair dye put in, and more cutting.

Ahhh... that's better. More like my hair.

What do you think? Does it look real?

Chemo Session # 1 is done

So, that was uneventful. I mean, really.

Yawn.

Well not quite 'Yawn' but close. Uneventful. Which is exactly how I like my medical appointments to go I think.

I was a bit nervous, but not that much. I really worked hard on not getting over excited, and it worked. I was (mostly) calm.

Our nurse was great. I think most of them working in oncology are.

She explained everything, went over (the many) side effects, and was patient with all my questions. She poked the port, which I did not feel (Yeay!!) since I had the Emla numbing cream on it all morning. The saline went in first and I didn't feel anything, then went in the Cyclophosphamide (I know, don't even try to say it) and after that, the drug Docetaxel.

This is me getting my 'chemo cocktail' - my nurse is gowned up so she doesn't accidentally spill the 'poison' on herself

(but apparently inserting it into my bloodstream is A-ok!)

For this one, they had me wearing gloves (more like oven mittens) that were in the freezer before. Ice cold, for the whole hour it was going in. This drug is notorious for causing fingernails to lift - yuck - so they do this (if you can stand it) as a profalactic measure to decrease your circulation going to your hands, so that hopefully, you get to keep your fingernails.

Wouldn't it be nice if I could get to keep something?

They've taken so much already.

These are my 'frozen gloves' that I had to keep on for one hour during the second part of the medicine.

Hmmm... notice I was TRYING TO READ? It got excessively harder to flip pages after that :)

I told you, uneventful. I am eating a banana loaf, and really not feeling much at all.

THANK GOD.

So, I am home now, but not for long.

In an hour, me and my dear friend Jessica, are heading out to pick up my new wig.

Woohoo.

Bad news I will have to shave my head for it.

Boohoo.

Now, I'm getting a little flack for this already, for doing it *so* early, so if that is your thought, then just lie to me okay?

I'd appreciate that.

Besides, I can justify my thinking:

My hair is due to fall out in the next 7-10 days. Which means that in a little over a week, I would find clumps of hair on my pillow when I wake up, on the ground as I walk, and in my hand as I brush it.

Talk about traumatic. No thanks.

Since I'm a control freak, my hair loss needs to happen in a very controlled environment. So, off it goes today. Besides, if I were to wait another 7 days, I will be in my 'low blood count' week and I'm not really supposed to be out of the house that much, so I would probably not go and get my hair shaved then, not to mention the wig will probably fit so much better without my mane underneath.

I have ordered one that is similar to my style, so no drastic difference.

I'm not gonna be a redhead after all. So sad. The one time I could have gotten away with it.

I will catch you later when I post some pics of it.

It's tomorrow!

Just wanted to say I'm on my way to chemo tomorrow at 10am.

I am scared, apprehensive, fearful, and frightened.

There might be a pattern in my emotions.

Ya think?

I hope I do well, I don't get sick right away and I hope it doesn't hurt.

Wish me luck.

9 days

I have been home since 10 am this morning. I had the longest shower ever, shaved my legs, my armpits and put on perfume. I feel like a human being.

It is hard to believe it.

I'm back.

And it's hard to think back on the past 9 days and not cry.

I was so naive to think any surgery is a 'minor' procedure. I went in last thursday fully expecting a 30 minute surgery to install my chemo port. If you remember, they weren't even going to put me out, but I insisted, being the big wimp that I am. My biggest worry was the I.V. poke.

I feel so foolish. Now, after 9 days of the most pain that I've ever experienced in my life, I am no longer naive. Each medical procedure, no matter how minimal it seems to be, carries risks.

I almost feel jaded.

Like when you have your heart broken for the first time, you no longer trust the same as before... that is how it feels. I no longer trust that 'the doctor will make things better'.

Even though I gladly signed the consent form before surgery, I wish I had informed myself a little better of all the risks...I wish I had thought about each one at length. I still would have chosen to go through with it, but I would not have been so shocked when it all went south.

Before you read any further, I should put in a disclaimer - I will be posting pictures in this post. Some you may find them pretty yucky. I've thought about not posting them.

But I will.

I figure, this is my outlet, my venting space, and that is what this blog originally was meant to be. Now that all of you have come along for a ride, I sometimes wonder if I should censor more, especially pictures... but I think that would not do my experience any justice.

If you don't wish to see them, just don't scroll down.

You're a big kid, you can decide on your own.

I get emails nowadays from complete strangers who read my blog and are just starting to go through the same things as I am. Women I've never met, emailing me telling me that they've been diagnosed with breast cancer too.. It always baffles me how this blog has grown... just look at the world map - I've never even BEEN to some of the places that my readers are from!

So, if you are going through this 'journey' too, and you are about to get a chemo port put in, please do not worry yourself to death, the rates of collapsed lungs as complications from the surgery, are extremely low.

I mean super low. But, they happen.

Just like cancer.

I am really thankful that I have Brad, who was with me at the hospital the entire time, and there with every procedure, by my side, holding my hand whenever he could and just outside my door crying silently when he could not go in. He told me he could hear me screaming down the hall sometimes when they were inserting tubes in me or taking them out, and I believe these nine days were equally hard on him, as they were on me.

All I remember is pain.

Once the lung was poked, there was pain. When the lung collapsed, there was pain. When they inserted the lung chest tube the first time there was pain. When that didn't work and the lung collapsed again, I felt pain. When they took the tube out, I cried. When they put in a new bigger one in my lung I screamed.

In between procedures, I spent a lot of times on heavy drugs.

I found out I don't like houses with bushes (apparently - according to Brad's last post) and time and time again, when Brad asked if there is anything he could do to make it better for me, I asked for a Bonzai tree... go figure.

Two things I never knew about myself.

I am now okay, happy to be home and healing. Brad even got my engagement ring fixed, and for right now, all is well with the world.

On monday I see my oncologist, do blood work, and re-schedule my chemo date... I think it may be wednesday - I missed about 10 days, but the show goes on.

I will now post pictures from last week below.

(yes, I made Brad take pictures so I could look at them later, when I was no longer in pain, and I could 'remember' what I went through ... but even without, I don't think I could ever forget)

This is about an hour after the port a cath surgery, when I found out the surgeon

had poked my lung by mistake. I was in pain with every breath I took.

That evening the on-call doctor was called in to insert the first tube into my lung... he was poking around to feel which area was the most 'inflated with air' - that is where he'd have to insert it.

Due to the time constraint and lack of empty rooms, he proceeded to 'gown up' right beside my bed and the first procedure took place at my bedside.

Getting ready...

I learned this week that the lining around the lungs is one of the most sensitive spots in the body, and even though he froze me, the many needles it took to freeze me completely were very painful.

This is what the hole looked like before the tube went in.

At this point he stuck in a syringe with a tube first, and proceeded to suction the air out that was there... Brad said that he suctioned air for about 10 minutes before he was satisfied that he got most of it.

After the suctioning was done, he inserted a small white tube to do the job

This is me exhausted, after the procedure was completed. If you look carefully, you'll see a small bump on the left side, around the blue part of the tube ... it's the port a cath showing under the skin...that's what that looks like. A small quarter size round bump.

This is day three, and my admission into the ICU. - The first tube didn't work

Brad was not allowed in for this procedure, but this is immediately after it took place.

I think I was crying.

This time they inserted a slightly bigger and longer tube, but through my back instead

and up inside my lung. I was also hooked up to a suction machine for 72 hours straight.

Here is a picture of what I looked like on the inside. You can see the port a cath,

as the round thing in my artery, and also, if you look carefully, the long white tube

inside my lung, going upwards.

The good news is, it only hurt when I breathed.

Boy am I glad to see you!!!

I just walked through the door, I have to shower and kiss my children but I wanted to say

HI!!!

Thank you for all your thoughts and comments, they all helped me tremendously.

I'll update soon :)

Last night's funny story

I thought I would share a funny story with you from last night in the hospital with Michelle. Each night before bed Michelle's Nurses give her some heavy doses of drugs to not only help her cope with the pain but also help her sleep. They are taken orally and given in her IV as well. Minute after the medication goes into her blood stream Michelle get woozy and soon after falls asleep. Some times we manage to talk for a few minutes but most time she is out like a light. ( Dana I can't imagine what you conversation went like when she "drug called" you the other night.) HaHA

After Michelle got her medications last night I tucked her in and told her I would be right back after brushing my teeth( for those of you don't know I have been spending the night in a chair beside her at the hospital every night) By the time I got back to the room after brushing my teeth the medication must have already kicked in.

She was immediately upset with me because I bought "The house with the bushes."

Me: "What house with the bushes?"

Michelle: "You said you would never buy a house with bushes."

Me: "Honey our's doesn't have bushes and I didn't buy a new house."

Michelle: "You promise you didn't buy another one with bushes."

Me: "I didn't and our house doesn't even have bushes......."

Michelle: "But your Mom called me and told me about the bushes."

Me: (amused) " I said it's time to go asleep now, Shelly. Night, night ."

Michelle: "O.K night night."

I got into chair and tried to get comfortable, just before nodding off I hear her mumble:

"I hate bushes."

New update!!!

There are now four doctors from three different hospitals collaborating on Michelle's lung situation. A Thoracic surgeon, Respiratory therapist and two Internal specialists. The lung hasn't collapsed in the last two days but she has been hooked up to suction for both of those days. The consciences is that to keep the chest tube in for another 36 hours which brings us to Friday. On Friday morning the doctor is going to clamp the hose and see if the lung is stable for the next 24 hours. If it is they pull the chest tube out and off to home sweet home we go. If it re collapsed its off to see the Thoracic surgeon to staple off the top of the lung.....we hope it doesn't get to this because that equals a two week recovery at best. Cross your fingers and toes for Michelle please.

Thanks Brad

The lung saga continues

UPDATE

Michelle has been transferred to the ICU for yet another invasive procedure. She had another chest tube put in her through her back into her chest cavity this time the size of a garden hose, now there bringing out the big guns. They keep promising this should work.

Michelle believes that the third time the charm. Fingers crossed.

Keep those comments coming they really pick up her spirits like nothing else.
The comment show here who is reading the blog.

Brad





Just a quick update from last night.(Brad again) This morning she had a setback, during the night the lung collapsed again back to were it was the night before before the terrible procedure. Michelle is now hooked up to some sort of vacuum contraption which seems to be helping. The last X-ray now number seven or eight showed the lung had re inflated and was doing O.K. Michelle was in terrible pain all day and was exhausted and totally fed up. Unfortunately this has temporally knocked some of the spirit out of her.



What does this all mean? This buys my poor Michelle at least two more night in the hospital :(

The new "plan" is to x-ray her again 24 hours from when the vacuum was hooked up and see how the lung is doing. If its still all good then they clamp off the vacuum and wait another 24 hours to see if the lung is cooperating not. If it is they pull the tube out and we go home. If not it means another friggin surgery to physically go in and fix the hole.



The crappy thing about all this stuff is that Chemo now has been official postponed one week. Shitty!!!!!



If that's not enough the IV has caused her hands swell up to the point they had to cut off her engagement ring tonight and then I had to pry it of her hand with a set of pliers.


All the comments are very much appreciated and I know help lift her spirit back up. I print them out and bring them to her it always bring a smile to her face during this hard time.

Thank you all

The human pin cushion

Hello Blog world Michelle has asked me (Brad) to write a post as she is still in the hospital tonight after what was supposed to be a day procedure for the port-a-cath. The day all started as planned, we woke up all the children, got them all fed and off to school on time.No problem!

We came home each got ready for the day surgery, both had showers, I ate breakfast where Michelle couldn't see or hear me because she wasn't allowed to. No problem! (besides Michelle being super hungry of course)

The clock struck 11:15 and off to the hospital we went. We checked in and Michelle had her vitals done and she put on her beautiful hospital attire. Then a nurse came in and said we can take you down to surgery a little early. We both thought "sweet!" that means the sooner we are in the sooner we can get home. No problem!

We get into pre op and Michelle gets her anesthetic like a trooper. Then she is whisked away for the thirty minute surgery. I go over to the waiting room grab my book and start reading. Before I knew it I saw the surgeon. She said it all went well we just need to take one more x-ray to make sure its all good. I think No problem!

Twenty minutes pass and a nurse comes out to get me to see her, as we are walking into see my Michelle she said" during surgery the her left lung was poked with a needle and has collapse a little and Michelle is in a ton of pain. AHHH HUGE PROBLEM!!!!!!!

As I walk into post op and see my beautiful girl with tears rolling down her face, saying why did this happen to me. Mean while Michelle has been given four shots of Fentanyl a powerful narcotic which taking the poor girls pain level down to a Five out of ten. The surgeon came up to us feeling absolutely terrible and said this is one of the risked associated with this procedure( which we had just read about earlier that week) and explained its all fixable. Great more fixing, just what she needed. Next Michelle is wheeled down to x-ray to check the progress on the leaky lung. Then back to post op where we see the surgeon one more time. The x-ray shows more air was going into an area where it wasn't supposed to be, hence the extreme pain. Still a huge problem!

We get transfered up to room were within a hour has another x-ray, thats number four of the day to check the progress again. The result weren't good, even more air were it's not supposed to be. The surgeon came up to the room to discuss a plan of action. He suggests inserting a small catheter into the area were the air thats not welcome to drain off that bad air and inflate the lung to were it should be. This does not sound like fun. Then he said we will do it right in the room and you will be awake during the procedure. Michelle is not impressed but basically has no choice.BIGGER Problem!

The surgeon comes to do the procedure, we are both really nervous of what's to come. The first step was to freeze the area with a needle that looked like it could take down a horse. He stuck the massive needle in deeper and deeper freezing as he goes. It looked and sounded so painful and I felt totally useless knelling there beside her holding her hand wishing I could take this all away from her. The surgeon then pulls out a long white flex able tube thing about the diameter of a juice box straw. He then explained that now he need to weave this white juice box straw thing in above her heart past then newly installed port-a-cath in between some ribs and into the area were the bad air is. No ultrasound just purely feel and is knowledge of the human anatomy. Michelle and I eyes are sticking out of our heads, thinking really? Well I guess he knew what he was doing because as soon as it was in Michelle felt terrible pain again. He said that the lung expanding back to its rightful place. He then order another x-ray(that's number five on the day now. Problem seem to be going away.

That x-ray finally had some good news. Lucky x-ray number five showed the lung was almost back in place and the hole will seal itself back up. The surgeon came back in and did a couple final adjustment to the tube and was able to relieve some of my Michelle's pain. Yeay!!!

This problem pretty much solved.

The crappy thing is we are in hospital for a couple day. The good news is this shouldn't delay the chemo, the hole reason we started this procedure.

I apologize for the poor grammar and spelling :)

Brad

Boy she makes this blogging thing look so easy to do......it's not thats for sure.

Michelle is popping pills

For someone who doesn't even take a pill for a headache, I sure have a lot of medications. Some are preventative pills some are reactive pills... some are pills to decrease the side effects of the other pills.

They all need to be taken at different times, some with food some without, some before chemo and some immediately after.

And not to mention the injections. Yowser.

I am going to get an injection about 24 hours after chemo - in my belly - apparently it goes in my fatty tissue.

(Note to self: do more crunches)

This particular injection is supposed to help get my white blood cells up for the second week of my chemo cycle. The way I understand it is this: I get my chemo on March 9th. Then I have about a week of feeling really crummy. Then, the second week, I start feeling better but my blood counts are at their lowest, so my immune system is compromised for that second week. I will be hiding under my covers and living in a bubble so that I don't catch a cold. Then, my third week is supposed to be my best week out of the cycle. My blood counts are on their way up and I am not sick from the chemo anymore. Whoohoo.

Then, we start the next cycle and we do this dance all over again.

And again and again and again.

(good thing I like routine)

Now, the injection is something I am choosing to do to help me boost my white blood counts while I go through chemo. I understand that by taking this injection I have a better chance of not getting sick the second week. This is especially important since I have no bubble to hide in and 4 children with germ filled hands running around. I figure it would be an extra boost, so to speak.

But it doesn't come easy. The biggest side effect, my doctor said, is bone pain, muscle pain, joint pain, skeletal pain.... Wait, I want to make sure I emphasize this and you don't miss it!

The main side effect is PAIN!!

A whole lot of that, in all sorts of different areas of my body.

It is supposed to last about 4-5 days and then subside.

Oh good.

I must be crazy to willingly put myself in this situation. I hate pain. Of all sorts. I cry when I get a paper cut. How will I handle it all?

Oh, I remember, drugs.

Well, that's alright then.

I also want to point out how silly 'the system' is.

They (Cancer Centre people) said that a home nurse would be administering the said injection to me at home.

Perfect.

But, when I called the home nurse people (because I like to micromanage and make sure we are all on the same page) they tell me that their policy is NOT to administer the first injection, due to risk of an allergic reaction. I need to go to the cancer center and get it injected there.

Good thing I called.

So I get back on the phone with the cancer agency, who says "oh, no problem, you can just give it to yourself then. We have a Nuelasta school (Nuelasta is the name of the injection) and you can learn to administer it yourself"

Pardon?

Ummm.... let's see. I don't like needles. I don't even like looking at needles. There is no way I can actually poke myself with a needle on purpose.

Especially a needle that will bring me pain.

Even if you send me to school for it (school is a bit of a stretch too, nurses go to school for years, my 'school' would be a 20 minute information session)

And not to mention that if the home nurse people are uncomfortable giving this to me for the first time, why should I feel oh, so comfortable?

After all, I'm a civilian.

What do I know?

I don't see the logic in this at all.