Chemo Hair

So, despite the handout that clearly states that hair loss is "not common" with Folfox chemotherapy, I have experienced some.  If you know me, you know that I can totally afford to experience hair loss.  I have a ton of hair.  So, I'm okay with a little thinning.   However, the thinning made my hair very dry and coarse and tangled.  Every morning for the last two weeks I would comb my hair and tug a knot out where the loosened hair was clinging on to the rest of my hair for dear life.

So... I have cut it.

And yes, of course I regretted it immediately.  It's way too short for my liking.  But as per usual, when you get it cut they spray it down, make it nice and wet, and then two hours after the cut, when it's completely dry, it's shrunk another couple of inches.

I do like it when it's wet, so I guess that's something.

Anyway, best case scenario, I just got rid of the dead, straw-like hair that I've developed.  Worst case scenario, I'm easing my way into hair loss a little at a time.  If it continues to fall out over the next four months, at least it wont' be such a shock to the system, as I've transitioned myself to short hair.

Here's my before and after photos of my new chemo do.

 BEFORE my impulsive "solution" to my brittle hair.

And AFTER - feeling softer and looking a little healthier, but geez, what was I thinking?

It's hair.  It'll grow back.  And I still have lots!

On to round 4 this Wednesday.  

Treatment 3

This week felt busy!  Tuesday, anyway.  I had an appointment with the oncologist and bloodwork in the morning; a half day at school for the kids in, followed by an ultrasound at 1:00  (because my remaining ovary, let's call the damn thing "Leftie" has decided to grow a mass --- that was NOT there in December.)  So, the ultrasound is to determine whether it's a normal cyst or something more ominous that caused them to remove Rightie at Christmas.  I will get the results next week.  The positive thing is that if it's a third tumour, we're already battling it with this chemo, so Leftie can suck it, as far as I'm concerned. After the ultrasound I had to pick up Connor at Cubs and then take him home and head up to the Elementary School for Parent Teacher Interviews and then over to the High School for more P/T interviews.  And I did it all by myself! :) 

Wednesday was the third chemo infusion, so it was nice, actually, to sit back and read a book in a comfy armchair while forced to relax and let the medicine drip into my vein.  And I seemed to have tolerated the hydration well, I only had to use the bathroom three times in the 3 hours I was at the hospital, as opposed to the every 15 minutes that the first two infusions had me going.  So now I'm just going through the 46 hours of being hooked up to the pump, which comes off tomorrow morning.  Then my 12 days of freedom.   So far, I am counting myself among the lucky ones.  This chemotherapy seems to have been kind to me, so far.

The first treatment was easy peasy!  No nausea (my anti-nausea drugs work well), no bowel issues out of the ordinary (hey, I don't have an ordinary since I don't have a large intestine anymore) so it's really hard for me to answer the "any diarrhea" question.  Enough said about that.   Basically, other than some fatigue for a couple of days after disconnect (I'm blogging tonight because tomorrow I will crash), my only real symptoms were the neuropathy.

So, that's a weird one!  It affects my fingers mostly, but also my jaw and my throat and my lips.  Cold is not my friend.  I get pins and needles in my extremities the second I touch something cold, like frozen food or milk or chopping vegetables.  My lips and tongue go numb and I start to lisp when I go outside.  And taking a bite out of anything gives me about 30 seconds of pain in my jaw before I can continue eating.  Water has to be room temperature now to tolerate it, but I still get the stabbing in my throat sensation with room temperature, so I might need to start hydrating myself with warm water (ugh) or herbal teas all day.

Also, I seem to have 2 or 3 days of blurry vision after disconnect, but it goes away so I think it's related to the fatigue.

Second treatment, still easy.  A little more tired and a couple of queasy moments.  I took the Immodium a couple of times so that I could avoid the lecture the Oncologist gave me after the first week when she said, more than 5 BMs a day is a concern and I need to be using Immodium, but I argued that was a good day for me.  Anyway, it's a learning curve, this rapid digestive system. Vegetables are not my friends!

So, what I've noticed is that the symptoms have been coming on stronger this week (treatment 3) and more painfully, but I can still deal with it.  As long as I'm not vomiting, I consider myself lucky.  I woke up at 5:45 this morning, very queasy, so at 6 I dragged myself into the kitchen and took my meds and tried to go back to sleep but I failed.  So, no surprise that I fell asleep on the couch around 2:30.  Poor Connor needed to be picked up at the school at 4:00pm and I jumped off the couch at 4:06 and raced up to the school.  In record time, I might add.  I got there in about 4 minutes.  He wasn't too devastated.  Three teachers were kind enough to wait on the steps with him. SIGH.  Call it chemo neglect, then I get a pass on that one.  And my stomach has been off most of the day, but again, not anything I can't handle (although if you ask my supervisor - I confided in her way TMI last fall when I was working and in pain --- apparently I don't have a good reference point for what constitutes pain or what I should and shouldn't have to handle, because I didn't call in sick until I was, literally, on death's doorstep.)

But, so far, so good. I am becoming a bit paranoid that my hair is loosening, though.  There seems to be a lot more shedding than I'm accustomed to. But if you've seen my hair, you know I can afford it.  I usually pay to get it thinned, so let's call this a free bonus in the fashion department.  It's not enough for anyone but me to notice and it could just be my imagination. But when I run my hands through it, I pull out several strands throughout the day and even more when I comb it.  And it's getting tangled easily, which isn't something that usually happens.  Now I'm feeling more empathetic to my daughters who both have baby fine, easily tangled, hair.

Here's to freedom from the pump tomorrow, and a well deserved shower!  I've got the hang of showering around my picc line and keeping it dry, but not the pump. That one, I'll just wait out.

Anyway, almost 25% of the way through chemo... and I haven't vomited. I consider that a huge accomplishment! :)

Long live the maple leaf!

So, just after New Year's, when I was going through my "google everything there is to know about colon cancer, ovarian cancer, chemotherapy" etc. phase, I joined a Facebook group for people currently fighting colon cancer.  And it's been enlightening.  I've been able to learn all about what to expect from upcoming treatments, I've learned that most of us fall into the 30 to 40 age range (the colonscopy screening age really needs to come down from the current recommended 50), and I've met some pretty positive "warriors."

I've also learned a lot about the American medical system and insurance companies that hold your life, literally, in theirr hands.  Their insurance won't pay for their treatments or, if it does, pays only a small part.  People are losing their livelihoods, their homes, their credit, the shirts off their backs because they had the misfortune of getting cancer.  Some of them have been fired from their jobs for not being able to fulfill their duties.  Others have stoicly worked through their treatments because they have no other choice; they've run out of sick time.

It's disgusting.  And heartbreaking!  A lot of my counterparts have GoFundMe pages. Go Fund Me... you've seen them.  They're webpages designed to canvas your friends and family for donations to help you get through tough times.  They are relying on the kindness and generousity of their family, friends, and friends of friends, to pay for medical expenses that they have no control over.

Here's the thing.   I don't have a Go Fund Me page. And I won't.  I don't need one. I have a job to return too as soon as I'm on the other side of this illness.  I don't have to fight with insurance to get my chemo covered, I just show up at the hospital and take it for granted that they'll give it to me.  I didn't get a hefty bill in the mail after my hospital stay.  I did have to pay for my anti-nausea meds, but only a few bucks because 80% of it is covered by my plan.  They cut me open for free.  I didn't even see a bill for the ambulance ride. We're living on less income right now because I cannot work while undergoing chemotherapy, but because I have decent benefits at work, we are still able to pay our bills, buy groceries, and make ends meet.  My employer has been amazingly supportive which has given me the flexibilty to be on sick leave with pay, which will flip into long-term disability in three months time.  I've got no complaints!

I am heartbroken each time I read about someone who has been denied insurance, or lost their home, or their marriage broke down due to the stress of bankruptcy.  Or, they've decided not to pursue treatment because they cannot afford it.  I do not understand how a country can claim to be a world leader in freedom and human rights, but doesn't take care of it's citizens when they need it the most.

I live on the right side of the 49th parallel.  And for that, I am super grateful!

Long live the maple leaf!

Bald is beautiful

I spent 4.5 hours up at the hospital today. I was dreading (with a weird, "let's get this over with" anticipation) chemotherapy this morning, but it turns out that the small town friendly charm extends to the oncology room as well, and aside from the IV and the funky side effects that have started again, and will continue for the foreseeable next few days, I actually quite enjoyed myself today.  People come and go as treatments are staggered throughout the day since the room only accommodates four patients at a time.  So I got to chat with four different women and three different men during my own time frame.  Everyone was friendly and positive and radiated hope and healing. 

During the time I was there I had the pleasure of meeting three very different woman who were all very beautiful!  One was rocking a wig that I never would have known was a wig had she not told us.  The second woman was sporting an inch or so of lovely, soft grey hair that had recently started to grow back. The third woman, who I spent an hour chatting with after my treatment, was completely bald.  And she was beautiful! Each of these women has embraced this side effect with courage and grace and were rocking it!  They were friendly, encouraging, and happy to share their own stories.  It was sad to be surrounded by breast cancer warriors, but it was also inspirational to see the grace and humour with which each one was dealing with her journey and this particular side effect of their common cancer. 

Hair loss is not a given with my particular chemo cocktail. If it does happen, I hope that I can be an inspiration to others too.  Because from what I saw today, bald truly is beautiful.

Round Two tomorrow

I spent a couple of hours up at the hospital today in preparation for my second round of chemotherapy.  Everything was good.  My blood tests were perfect (white blood cell count, I think), my blood pressure, temperature, and O2 were perfect.  I had an ECG which apparently was normal, and I spent about 30 minutes talking to a very thorough GPO (General Practitioner Oncologist) about the side effects that I've experienced so far.  She gave me the green light for round two.

The only slight glitch is that I may be having an allergic reaction to either the bandage on my arm or the antiseptic that they use to keep it sterile.  I've had two dressing changes now (every seven days) and both times my arm has been very red underneath the dressing.  After the first one I developed a burn blister along the edge of the bandage, which has since gone away.  After the second one, my arm itched like crazy for a few days.  Today when she pulled off the dressing  she used one of the antiseptic cleansers instead of two, and washed it with saline afterwards to see if that helps eliminate the burning.   To rule out the bandage as the culprit, I'm wearing one on both arms to see if my other arm gets angry and red. 

So far, so good... not itchy under either bandage, so with any luck, it was the cleaner that she did not use today.  Other than that, today was easy peasy! I'm a model patient.

So...  on to round two tomorrow morning.

Signs I ignored

Okay, so here's my little PSA --- colon cancer does NOT only happen to older adults.  Since my diagnosis, I've joined a facebook group and met a whole host of people in their thirties and forties that are reeling with the same shock I've been dealing with.

So... if you're worried, get screened!

Now, way too much information is coming, so if you don't want to know, don't keep reading.  Just be your own advocate and get screened!

I remember going to the doctor when I was 36, just after Brooklynn was born and talking to her about my family history of colon cancer.  I asked her when I should have a colonoscopy.  She gave me the same answer that the doctors I spoke to last year gave me.  Screening is recommended at 50, or ten years younger than your nearest relatives diagnosis.  Well, my Mom was diagnosed at 60, so that makes my screening age... 50.  I was okay with that because, you know, I'm invincible.  I should have pushed harder.  My body couldn't wait until 50.   On the plus side, my brothers and my children now get to tell their doctors that their nearest relative was diagnosed at 41, so their magic number is 31.  Both of my brothers, who are nowhere near 50 themselves, have made appointments for screening based on me, so for that, itself, this is worth it.  I also heard that one of my cousins is going to have a colonoscopy now, too.  I'm very proud of her!

So... what symptoms did I ignore?  Turns out, a hell of a lot!  And, in my defense, I didn't totally ignore it.  I was more "in denial" and coming up with every other possible explanation for what my body was doing to me.  Because it couldn't possibly be cancer.  I have four kids, for god's sake, I don't have time for cancer.

Things started getting lousy right around my fortieth birthday.  But it was subtle and easy to think that it was all in my head.  I suddenly went from being a night owl to being someone with no energy to even make it to the children's bedtime without wanting to curl up with a blanket.  I was irritable, depressed, unethusiastic about all the things that usually made me happy (like scrapbooking) and I avoided them.  This went on for several months and affected me at home as well as at work.  I was burnt out! I was picking fights with my husband.  I had no patience for the volunteer work that I used to be so passionate about.  I was forgetful and disorganized.  And I couldn't cope. I remember last winter having an emotional breakdown in my office and sobbing to my boss that I thought I was going crazy.   The next day she sent me an article about "Peri-Menopause," to which I of course replied, "No effing way I'm old enough for that."  But after reading it, well, it kind of made sense, so figured that was as good as an explanation as anything.  And it was a relief because it actually explained a lot.

I lost twenty-three pounds last year, between January and August.  Not a symptom, because I totally wanted to lose the weight. And I was kind of half-heartedly trying, but it did come off remarkably easy.  But as my pants got looser, my shirts got tighter.  And the baby fat that I've been carrying around since become a Mom was not going anywhere.  I looked pregnant.  As was pointed out to me.  "Oh, when are you due?"  Umm, four and a half freakin' years ago, thank you very much!  And so I watched my stomach get bigger and bigger while people said, "You've lost weight!" And instead of enjoying the compliments about my weightloss, I was embarassed and depressed because all I could see was this volleyball sized gut that I was growing.

And there was other stuff, too. Girl stuff that suggested that my reproductive system was going hayire.  Things were happening more frequently and with a lot more intensity.  But if you google peri-menopause, that's normal for people my age, so I totally ignored that.   Completely ignored it, actually. When the surgeon told me that there was a tumour on my ovary, I was blind-sided.  Now, looking back, there's a lot that makes sense.

But here is what I really want you to take away.  And where you might want to stop reading if you don't want to know too much about my pooping habits.  Around January, I started to be keenly aware that my bathroom abilities had very subtly started to change.  Without being overly descriptive, let's just say there was more urgency, but far less satisfaction.  You know... when you know you've done a thorough job, you feel pretty good about yourself.  It sets the tone for your whole day.  And I used to be really good at emptying my bowels.  Until last year.  I started to get urgent cramps that in no way matched my output.  I would visit the bathroom and leave thinking, "Well, that wasn't worth the effort. There's gotta be more in there than that." It's was a little disheartening.

But I ignored that one.  Because really, that's embarassing.  And we don't talk about it.  Everyone poops but no one admits it.  And it started so subtly that I assumed it was my imagination.  And it  wasn't until later on in the year that it got to the point where I started thinking, "Okay, this really isn't all in my head."

At first the cramping only happened right before I went to the bathroom.  But right around the summer time, it took on a whole new level of pain.  It wasn't just a few stomach cramps that went away after using the bathroom, it was like being in freaking labour.  It's the only way to explain it.  Doubled over for a few seconds, then reprieve for a few minutes, then doubled over again.  The first episode lasted about six hours.  And then I was good for a couple of weeks.  Well, okay, not good, but certainly not bad.  I was able to go about my days relatively easily, only having to breathe through the "contractions" a few times a day.  Then in September it happened again, only it lasted longer, this time I was doubled over for a couple of days before the pain subsided.  And then it was kind of just constanly there, a teaser that I was able to ignore for the most part.

So I went to the doctor.  I'm not a complete idiot.  I know stomach pain is not a good thing.  And she ordered bloodwork and an x-ray, and a stool sample that was recalled the day after I did that traumatic act of collection.   And I got a couple of diagnoses that made sense.  One was iron-deficiency and the other was constipation.  The iron deficiency made a world of sense. It was as if a light-bulb went on and as soon as I got that one, I felt so much better!  There was an explanation for my brain-fog, my depression, and my exhaustion after all.   The constipation diagnoses I was less convinced of.  But I was willing to try anything to stop the pain, so for the next three months I lived off of WAY too many laxatives.  At one point the doctor had me on four doses a day.  And I will admit, I wasn't having stomach pain.  But I wasn't having fun, either.  And when the blood appeared, I backed off of those laxatives of my own accord, which only served to bring back the pain with a vengeance.

In October I got the referral I'd been seeking!  Yay, I was about to have my first colonoscopy --- oh happy day!   I was on the waiting list and due to be called in for January.  It took some work, but I had convinced them to screen me a decade earlier than the textbooks recommend. Now all I had to do was make it through Christmas and there was light on the other side of the tunnel. This was a relief.  I knew that I would get some answers

But the pain returned, with a vengeance, after I detoxed from the laxatives that were scraping my colon raw   (so, here you go, anytime you see blood in the toilet, get yourself to the hospital stat, I don't care if it's  a fissure or a hemorroid, or you ate beets yesterday and forgot, it is better to be safe than sorry).   So... back on the fibre I went.  But the pain just got worse and my production level went down.  And suddenly those classic "pencil-thin stools" that every website about colon cancer warns you about... they were there.  And that was scary.  January's scope couldn't come fast enough for me.

On December 17th, on a Sunday morning, after a particularly painful weekend where my stomach was grumbling so loudly my children could hear it across the house (that's not an exaggeration) and there had been NOTHING coming out for days, I went to the emergency room and said, "I think I have a blockage."   I was sent home with different laxatives to try because, "if you had a blockage you'd be vomiting", an anti-inflamatory to shut up my vocal stomach, and a prescription for a pro-biotic.    Okay.   This is where anyone other than me would have argued.  But I've never been my own best advocate.  So I went home, frustrated, and I drank the syrupy drink that was supposed to clear me out.  And I popped the anti-inflammatories that were to ease the pain.  And by 3pm that day, I was vomiting.  And vomiting.  And then for good measure, I vomited a little more.  All afternoon.  All evening.  And all night.  Those new meds didn't stand a chance because they weren't staying in my stomach.

Monday morning I phoned the clinic and got an emergency appointment.  I hugged my kids a little tighter as I watched them leave for school, told them I loved them, and just had a really bad feeling that my day wasn't going to end well.  We went up to the clinic and I met with a doctor who had never seen me before, but when you call at 8am on a Monday morning for an emergency appointment, you take whoever will see you.   And she specializes in colons.  And she saved my life.  I told her I was sure I had a blockage and I couldn't take anymore laxatives, the blood was too scary and I really couldn't wait until January for the colonoscopy.  And she believed me.  And sent me to the hospital for an emergency x-ray which showed... a complete blockage! 

On December 18th my healing journey started.  I spent 12 days in the hospital, 8 weeks recovering from a massive surgery (I'll blog about that later), and now the next six months will be taken up with me blasting my body with chemotherapy.  We caught the cancer at stage 4, colon cancer that has metastasized to another organ (my right ovary, may she rest in peace) which sucks, but what can I say, I've always been an overachiever.  Go big or go home, right?  And at  least I'm here to talk about it.  Because blockages are serious.  They could rupture and poison you.  Mine didn't.  But apparently, which I didn't know, my Great-Grandma's did.  Yikes.

And those are the signs I (almost) ignored.  So don't you ignore them! Please! Don't be like me and think "I'm a hypochondriac," or "I'm just imagining this," or "my bowel movements are too embarassing to talk about."   If it seems odd, it probably is.  Better to be safe than sorry.  Don't wait until you are in pain to mention your concerns to the doctor. Please.  Especially if you are one of my family members on Mom's side.  I'm officially a fourth generation colon cancer patient.  Me, Mom, Grandpa, and Great-Grandma.  If I can get it, then our whole family can.  Use me as an example as to why you should not wait until you are fifty.

That's all!

My PICC line

So, this is my travelling companion for the next six months or so...

 It's a PICC line, which stands for Peripherally Inserted Central Catheter.  It's basically a tube that goes into my arm, through a big ol' vein, and hovers somewhere just above my heart. It's how the chemotherapy is delivered into my body and it's also how all my blood can be drawn from here on.

Very handy.

Except when it's not.  Like when I want to shower and wash my hair but I'm not allowed to get it wet due to the risk of introducing infectious bacteria into my body.  Or when I might accidentally snag it on my clothing and yank it out (I'm not actually sure that would happen, but you never know).

I've had four showers since it was inserted and each one came with it's own challenges.  But we've figured out that if I use approximately half a roll of cling wrap (the pricey Press and Seal apparently works the best) wrapped around my arm and then taped along the seams, I can shower fairly easy whilst keeping it dry.

Of course, my mobility with half a roll of saran wrap around my arm is much more limited.

So I went online and googled "Waterproof PICC line covers" and now I am eagerly awaiting my new shower accessory that scored 4.5 stars on Amazon.

In the meantime, noting that the mesh "sleeves" that the hospital gives me to cover the PICC to avoid potential snags, get really grungy, really fast and do not hold up to the washing machine, I decided to try my hand at creating a reusable, washable sleeve. 

What do you think?   I'm not sure how long this one will maintain it's shape before it rolls down all stretched out and useless, but for now, it's fitting over my arm quite nicely and the itchiness that the mesh ones gave me seems to have vanished. I'm going to wear it to bed and see how it holds up.  Tomorrow I'm going to try making one with a stretchier, softer, wool to see if I can't tighten it up.

Who knew... cancer has provided me with another hobby!