Chemo Hair Loss

Hair.  You don't realize how important it is until it is gone.  It is one of the first things people see when they look at you, it defines us in a way.  I have had long hair most of my life too.

Hair loss occurs about 12-17 days after the first AC chemo infusion, occasionally longer.  For me it was day 12.  I had long hair - well past shoulder length.  I have always been a "shedder" and constantly lose several hairs a day.  But on day 12 I took a shower and noticed I was losing way more than normal.  I made a little "shower art" as I pasted the loose strands on the shower wall to avoid having it get stuck in the drain.  After this shower I knew it was time. I chose to let my hair air dry as I went to the grocery store.  While at the grocery store it kept falling out, crazy amounts were falling out and I didn't want to start pulling them as I did not know what to do with them.  I made it home and with the help of my hubby and we prepared my hair to be donated.  Below is a picture that was taken just before the cutting began.

My hair - photo was taken right before it was chopped off.  If you look closely at the bottom you can see some loose strands that were falling out.

When I found out I would have chemo that would cause my hair to fall out (not all of them do), I knew immediately that I had to donate it.  In addition to helping a child with cancer (I am struggling and have no idea how the kiddos do it) it gave me a good feeling - like I was recycling or using my misfortune to make someone else happy.  I just didn't want my hair to go to waste.  Cancer can attack my body, but it cannot stop me from helping someone else.  I chose to send it to Locks of Love, but if you search there are a ton of places out there that will take hair donations.  I didnt measure it, but I estimate that the longest strands were about 16-18 inches?  Below is a picture of the hair once it was cut.  You have to put it in a ponytail in order to donate and mine was put into several to be able to send as much as possible since I was shaving it off.

Wow, how long was my hair!!  It will grow back, but at a rate of 1/2 inch per month.

Sent it all off to Locks of Love.  I hope someone can benefit from my loss.

After  all the ponytails were chopped off my hubby took the razor and made everything even - at about 1/4inch.  I was told that it is easier on the scalp and is less itchy if you leave it really really short as opposed to having it completely shaved off.

A few days after I got my super short 'do I was in the shower and when I washed my hair it was coming out in bucketfuls.  Every time I would rub my head I got a handful of little hairs.  I kept doing this until they didnt come out anymore.  All in all, I still have a few hairs - maybe 1% of my original hairs, but still a few that are holding out.  I dont know if those will eventually fall out too, but it doesnt matter either way - actually it may be better if they all fall out.

What is it like having no hair??  Weird.  My head gets cold.  But showers are so much faster and no need to blowdry.   I have a wig that sorta kinda looks like my old hair - well at least it is as long as it was.  I am still getting used to the pre-styled look as it has way more body than my real hair did and to me it makes my head look big.  When I am at home I usually dont wear anything - I did get some hats to keep my head from getting too cold, particularly while I sleep.  When I go out I wear the wig.  I am still working on what I do when I go for my walks.  I have been trying to walk 20-30 minutes a day.  I have a wide-brimmed hat that I wear without my wig (dont want to get it all sweaty), but it looks painfully obvious to me that I have no hair underneath.  They do sell wigs that are designed to be worn under a hat - I need to get one so I have more confidence during my walks.  I saw my neighbor who I dont talk to, but who has seen me and knows I have a lot of long hair, during one of my walks and she gave me the Pity Look . . . the pity look is the worst thing you can do - dont give us that horrified, scared, sad look.  I would prefer you look away than give me the pity look.

I was having writers block on this post and since then I have got a hair topper - basically a wig that is designed to be worn under a hat.  There is far less hair and there is none on the top.  I got mine from headcovers.com and it is much cooler and easier to wear under my hat for my walk.  I just have to remember to put sunscreen on the top of my head.  Overall I am more photosensitive (burn easier) because of the chemo, but also my head is used to being covered with hair to protect it from the sun.  I also have a solid wig cap that works too.  I order a lot of stuff from the internet and what I liked best about headcovers is that they wrapped all of my items in tissue paper and put a pink ribbon and sticker on them.  It was almost like I was receiving a gift . . . even though I know I paid for it myself.  Nice touch.

Eyelashes and Eyebrows also fall out for most people.  I have noticed that almost every morning I wake up and find an eyelash/eyebrow on my cheek.  Sometimes I find an eyelash in my eye.  I have noticed that both the eyelashes and eyebrows tend to flip the wrong direction before they fall out.  For the eyelashes this means that they turn so that they are poking me in the eye.  I have noticed that my eyebrows are much thinner than before.  The eyelashes on my bottom right eyelid are the ones that are coming out first, but the rest are following suit.  I can't say I am excited to be losing my eyelashes/brows.  I need to learn how to put makeup on . . . time for a Look Good Feel Better class.

AC Chemo Story of round 3

In the days leading up to round 3 I was feeling good - really good, probably the best I have felt since chemo started.  I felt so good that I didn't want to go get chemo again and had a couple of breakdowns in the days leading up to it.  How do you prepare for torture?  How do you knowingly prepare yourself to be given stuff that will make you feel like you have a week long hangover?  It isn't exactly like a hangover, but that is the closest thing I can think of to describe what it is is like.  Well the answer is you find a way, it is hard, but knowing that this "hangover" is working to make you better is the motivation.  But it is still hard.  Really hard.

I prepared for this chemo by drinking lots of water and trying to eat high protein and high fiber foods.  I also was walking 30 minutes a day on most days prior.  I even walked 30 minutes on the morning of chemo. This infusion was done by another nurse - so far 3 infusions, 3 different nurses.  I went in the day before chemo to have my blood drawn - and the phlebotomist missed on the first try - so lucky me I now have 2 needle sticks . . . my poor left arm looks like I am a druggie, sigh.  I asked about my wbc's and they were on target at 6.9 (4-11 is the expected range).  During an appointment with the physicians assistant she gave me a printout of some of my test results - on a sheet that compared prior results.  I learned that my wbc's were high prior to my first infusion . . . which in hindsight was a clue that I was getting sick.  Now I am going to ask for my numbers prior to my infusion.  I do get a lot of test results via the electronic system, but my wbcs are not one that I can see on there.

The infusion went without much incident, except while she was trying to clear a bubble I saw her suck up some blood into the iv tube . . . not a big deal, just remember I am such a chicken that I cannot watch the adriamycin infusion where she has to inject some then suck up some blood to make sure that she is still in the vein (cause if it escapes the vein it can cause some major havoc on the surrounding tissue).  I actually have a video that my hubby took of the first infusion that I will post eventually, but in the name of quality control I have to watch it first before I post it here and I will do that after I am done with the adriamycin.

I dont have the pain that I had after infusion #2 . . . I had been making sure that my left arm was not asleep - I was keeping it warm, moving it and not using it to hold up my phone when I am playing around with it.  In hindsight that was something I had noticed that my left arm was falling asleep before when I was playing with my phone.  But I think the root cause is the nerve damage I did 15-20 years ago when I hit my "funny bone" really really really hard.  I do periodically have issues, it is just bad timing to have these issues.  But when it rains it pours.

I was starving after chemo was done which I took as a good sign.  I went home and ate . . . and maybe ate a little too much because I felt bloated.  Then nauseous.  I took one of my back up anti-nausea meds and eventually felt better, but I didnt really sleep at all and I was swollen more than normal and in general felt really bad.  I was also hungry but couldn't eat/nothing seemed palatable.  I managed to choke down some saltines, but they tasted horrible.  I didnt have much appetite and spent the day resting but I was out of it.  I did slowly start to feel better and by day 2(the day after chemo) I was starting to feel halfway normal again, but still feeling bloated, burpy and icky and dry - I was like the desert I would drink water but my mouth still felt dry and my skin I woke up on day 2 with my face almost peeling because it was so dry.

Last time on day 4 after chemo I had the most horrible sour/acidic stomach you can ever imagine.  I told the docs and they gave me some pepcid to take and said i should start on day 1 to help with that.  I have also been avoiding most acidic food and drinks which I think has also helped.  Well I stopped taking the pepcid on day 3 as I thought that was the cause of my dryness.  The dryness has improved, but im not sure if it was the pepcid or not.  My stomach was a little off on day 4, but I ate a lot of potatoes, one of the least acidic foods but it is also hard because my mouth felt so dry that I had to make sure and eat food with some moisture.  All of these restrictions make it hard to eat anything.   I am thankful that this is only temporary, but I have a great deal of empathy for people who suffer from eating issues on a routine basis.  On a positive note I did find Biotene Toothpaste, mouthwash and mouth spray.  These are products that are designed for people with dry mouth.  I used the mouthwash after round 2 and it helped a lot.  I then bought the toothpaste and started using it this round.  Then the other day I found the mouth spray.  It really helped when my mouth was dry and my tongue felt hairy.

It is embarassing to talk about, but lets just say that the dryness I was experiencing also affected other bodily functions.  I'm talking about constipation.   I'll spare you the details, but lets just say I have never experienced anything close to it being this bad, not even in college when my diet was horrible.  This is a  known side effect of chemo and so far I have been lucky to avoid it.  I have been good about eating high fiber foods, but this time it did not work.  I think the dryness I was experiencing was a major contributing factor.  And chemo effects are cumulative.  But lets just say chemo yuckiness combined with constipation crankiness make for some pretty miserable days.

Today is day 9 and I am feeling much much better.  I still feel tired but I do have sparks of feeling normal again.  I have some lovely little white bumps on my face - which after the first round I thought was from the cipro, but now I think are from the steroids.  I am eating like there is no tomorrow - I cannot eat huge portions so I am eating more frequently but yesterday I was starving all day long.  I think it is a good sign as my body needs fuel to repair itself, but it is hard because my eating is not "normal".  I am avoiding a lot of acidic foods (including tomato sauce), the docs said not to eat raw fruits/veggies unless they are peeled, and spicy or strong smelling/tasting foods are also out.  I feel like I am eating like the pickiest kid in the world.  Oh yeah, I cut the crust off my sandwiches too.

I am also on a mission to prevent mouth sores.  I had a couple last round and they were horrible.  They happen on the lowest immunity days which for this kind of chemo is on days 14-16.   The sores look like little red dots on my tongue.  They are fine if I am just sitting here, but if I go to eat and some food touches it they become extremely painful.  Like someone hit your tongue with a nail/hammer.  I have been rinsing my mouth several times a day with a rinse of salt and baking soda.  I hope it helps, but I have forgot to do it a few times . . . but I wont know if it worked until next week.

Wow, I wrote a book.  I should probably write more often but for some reason I have had writers block and not had the motivation to work on posting.  I am still working on the post about hair loss . . .