Hair loss makes this experience real now

Lisa1028

First, I want to thank everyone who has posted on this forum. I have been reading the posts since being diagnosed with stage 2 anal cancer in July. Your tips and suggestions, along with reading about your experiences, have been very helpful.

I have been keeping a journal about my experience and just last night was saying how it still doesn't feel real (even though I'm three weeks into treatment). But then this morning in the shower, my hair started coming out. A little came out yesterday, but today was much worse.

So, depsite my denial and kind of going through all the many appointments and treatments up to this point in a sort of removed state, the hair loss suddenly has made it all very real. (I just made an appointment for tomorrow to have my short bob chopped into a pixie cut - I figure at least then, it won't seem like so much hair coming out.)

Depsite the emotional punch of the hair today, I feel like overall it's been going okay so far. Of course, I know the toughest part is yet to come when I start my next round of chemo on Monday and as the radiation accumulates. Yesterday, I noticed a skin color change (darkening) in the anal area, and it's starting to burn a bit more down there. I had been using Aquaphor since treatment started, but now have switched to Triple Paste diaper cream. Apart from one Toradol the other night, I've been able to manage the pain with ibuprofen as needed. Again, I am prepared for that to change next week. I'll probably start sitz baths today or this weekend.

I wanted to ask for your input on the peri bottles and how exactly you use them. I imagine it's while sitting on the toilet, but do you go from behind, in front, both? I ordered three from Amazon, along with this little plastic thing to help you pee standing up - haven't needed that yet, but wanted to be prepared based on what I read here. The peri bottles were still in the packaging on the dining room table, till I came home today and saw that - among other things - our new dog decided to "investigate" the packaging and managed to bite through each of the bottles! I'll probably send my husband on an errand to a local medical supply place to get more (I could not find them in Walgreens or CVS). Thankfully, I don't have an urgent need for them yet, but wanted to share as it's good to have humor throughout this journey. The dog also got into the trash in the bathroom, so I had to pick up my clumps of hair from the floor. Still, he's a sweetie and a good distraction for my twin 5-year-old boys who just started kindergarten recently. Am trying to keep things as normal as possible for them and VERY grateful for help and support from my mom and mother-in-law in helping with them.

Thanks again for all of your posts here. I am lucky to have a great support system, including friends who are breast cancer survivors and who can somewhat relate. But it is nice to have this place with people who really know what you're going through - not only for the empathy, but also for the great tips on how to get through this. It's also encouraging to hear from those of you who are well past treatment and starting to return to your new "normal."

 

 

 

eihtak

Lisa1028.....

Hi, and glad we are all here to help each other.  There is probably no specifics on the peri bottles....I used one my daughter had received after childbirth but not used. I used to just sit on the toilet and creatively squirt as I peed from the front! Lukewarm water felt best. What is really helpfull throughout and afterwards is a handheld shower hose/handle. It is so soothing to just be able to clean your bottom with a gentle mist.

I had thick shoulder length hair prior to treatment (am now almost 3yrs post) and when my hair began to thin I also got a shorter cut. It never did all fall out but I continued to lose more daily. Within a few months post treatment it was thicker than ever and in my case much less grey! I have now kept the shorter hair style as its much easier for me to handle.

I have 5 children all of which were in high school or college at the time of treatment. You may want to continue whatever assistance you can for the twins and focus on yourself as you progress. (I know thats easier said than done and I now have several grandsons that I help with on a regular basis no matter how I'm feeling) But, truthfully, if someone asks to do something for you....let them. This treatment becomes difficult for sure, but then just when you think you can't do it, poof, you'll be on the home stretch and its relatively short in comparison to many other cancers. Do eat well while your appetite is there, lots of protien like greek yougurt seems to work for many.

Do not hesitate to come here with any questions as nothing is off topic.  We are all in the same boat with individual and unique issues yet share so many similar stories.

Congrats on getting off to what sounds like a great start!

Be well.

katheryn

mp327

Lisa

I remember vividly the day I noticed my hair coming out--day 21 of treatment--right where you're at now.  Part of me wanted to cry and part of me just said this is only temporary so let it go!  I would estimate that I lost maybe half of my hair in clumps all over my head.  It was NOT a pretty sight!  However, despite the urgings of my husband to get myself a wig to feel better, I resisted and just wore a ballcap (I'm sort of a tomboy anyway!).  He went ahead and ordered a halo wig for me, but I never wore the thing.  I do understand how traumatic this can be, especially for we girls who love our hair, and I am sorry that you are having to go through this.  If you do not have any objections to wearing a wig, I would encourage you to check into it.  Your insurance may cover the cost and there are some very stylish ones that look so real.  Perhaps the short haircut you'll get tomorrow will be enough to ease the pain of losing your hair.  I hope so.

As for the peri-bottle, I have no experience there.  I wish I had known about how useful they were in helping to quell the burning of urine on radiated skin when I was going through treatment, but I had no clue.  I hope you can get another one and try it--many find it helpful. 

You already know that you're headed into the rough stretch, but you can do it!  Try to eat as much protein as you can to promote healing and drink lots of water.  Rest when your body needs it and like has already been suggested, do not turn down offers of help.  Devote your energy to taking care of yourself through this rough patch and let others do whatever they can to allow for that.

I wish you all the best.  Please keep us posted on how things are going.  You are doing a great job so far and I know you'll get to the finish line!

Martha

sandysp

Pixie cut

I am sorry your hair is falling out. We know it's probably going to happen but I also remember how I felt when I ran my fingers through my hair and found my hair sticking to my fingers. Like I was going to throw up. Like hitting the bottom of the barrel or something. But I called and got my hair cut into a pixie also. It's what MSKCC recommends. They say DO NOT SHAVE YOUR HEAD. You can get an infection from an ingrown hair and that is not something anyone wants to deal with while undergoing this treatment. I got so many compliments on my cut, I couldn't believe it. I would get stopped in the grocery store by people wanting to know who cut it for me. My hair dresser was short on people skills but very talented. I managed to never need a wig but went to him often. When the hairs are really short, you can't tell if they are coming out. He managed to have them all cut so that my head was covered, especially when I used a texturizer. 

So we are all here for you, as you know. I am glad you have help with those twins. It isn't fair that you have this so young but the good news is you will snap back faster than us older girls:-) At least that's what I hope for you.

Take care. Rest, rest, rest. And take walks (short ones) as much as you can. We get really stiff from this treatment. I did Tai Chi with videos and believe it was very good for me (mindful movement or moving meditation is what it is). It helped my pain also.

The bible always said "it came to pass" it never once said "it came to stay". Sometimes it can't pass fast enough, I know but now that I look back, this disease changed me for the better. Hardship teaches us to be more compassionate for one thing.

I didn't have any urination problems. I think that has to do with where your tumor is located on the anus (high or low). Mine was low. Maybe you won't have any problems either. But it's good you are prepared.

All the best,

Sandy

judyv3

Lisa

I didn't use a peri bottle because I couldn't find one locally.  I don't know why I didn't think to order it online.  I used a sports water bottle for awhile.  I also preferred the handheld shower.  I'll never forget catching a glimpse of my very dark butt in the mirror.  I was horrified.  I didn't lose my hair.  I can imagine how devastating it is.  I cut mine very short because I thought I would lose it but it didn't happen.  I kept it short (when I could take sitting for a haircut).  And it is now all gray.  I kinda like it and I won't color it anymore, it's nice not having to bother.

Please heed the advice about eating protein and keeping hydrated.  I did not hydrate enough at one point and nearly wound up in the hospital.  Since you've read on here, you know things can be really tough - but you are tougher.  And you will get through this and it will be a distant memory very soon.  

I'm sending you a virtual hug and lots of positive energy to get through your treatment and back to your twins (OMG, twins!).

Judy

TraceyUSA

I know that feeling!

Lisa - You described my and my hair loss exactly.  I felt things were going pretty well and could cover up my diagnosis until the hair fell out.  I never lost it completely but got VERY thin.  I considered a wig, had one picked out and was ready to buy it but decided to visit my hair dreeser first.  I'm glad I did because she was able make it more bearable and I never got the wig.  It's about 1 1/2 years since I finished treatment and my hair is finally back to normal and a littler longer than chin length (would be longer if I hadn't kept getting it trimmed and styled). 

As for the peri-bottle, I never used one.  I didn't have painful urination until the last few days of treatment and for a week or so after.  I just gritted my teeth through it.

Best wishes for a quick recovery!

- Tracey

nicotianna

peri bottles

Hi Lisa - I think I tried using squirt bottles I had around the house but found them to be not helpful.  I peed in a filled sitz bath to ease the pain when voiding.

Nic 

qv62

Lisa1028

I made sure I took the peri-bottle with me wherever I went, I kept a tote bag with supplies in it for whenever I needed to leave the house and the bottle was a staple, I filled it with lukewarm water and just squirted before, during and after, I hope the new haircut will make you feel better. I cut my hair right before treatment, filled the script for my wig but actually didn't use it, I also had felt the thinnning and cleaned out the shower drain everyday but used burts bees baby shampoo and tried to only wash it every other day, I felt this was helpful. Good luck and keep us posted,

Ouch_Ouch_Ouch

Doggies!

Hello, Lisa1028:

You gotta love a curious doggie!

You can find peri-bottles at medical supply stores (where they sell wheelchairs, bandaging, etc) and peri-like bottles at any beauty supply or make-up store. I didn't need it for urine, but for rectal pain following all the diarrhea I had. At first, I mixed in a little bit of mild liquid baby soap into the water, but that soon became way too irritating, so I used plain water. I utilized a small spray bottle I got from Linda's Beauty Supply (they issue catalogs and also sell online, I think).

I know what everybody means about how they felt when their head-hair started coming out in handfuls. I never completely lost mine, but it got extremely thin. When the new hair began to grow, my husband used an electric trimmer to cut everything to about 1/4" long. It made it instantly look much fuller and is now growing fast. The oncologist said that hair frequently grows back very curly, but mine is as straight as an arrow. It's not nearly as silvery as it was before the chemo, though; I have quite a crop of dark brown shafts sprouting.

Lisa1028

Ouch_Ouch_Ouch said:

Doggies!

Hello, Lisa1028:

You gotta love a curious doggie!

You can find peri-bottles at medical supply stores (where they sell wheelchairs, bandaging, etc) and peri-like bottles at any beauty supply or make-up store. I didn't need it for urine, but for rectal pain following all the diarrhea I had. At first, I mixed in a little bit of mild liquid baby soap into the water, but that soon became way too irritating, so I used plain water. I utilized a small spray bottle I got from Linda's Beauty Supply (they issue catalogs and also sell online, I think).

I know what everybody means about how they felt when their head-hair started coming out in handfuls. I never completely lost mine, but it got extremely thin. When the new hair began to grow, my husband used an electric trimmer to cut everything to about 1/4" long. It made it instantly look much fuller and is now growing fast. The oncologist said that hair frequently grows back very curly, but mine is as straight as an arrow. It's not nearly as silvery as it was before the chemo, though; I have quite a crop of dark brown shafts sprouting.

One-year Update

Hello, to all of the wonderful folks on this site. I've been checking back here and there throughout my journey, but today is my first post since the one above from last year.

First, thank you all for your support and good suggestions. This board has been increcibly helpful.

After completing my chemo-rad last fall, I had a PET scan in Feb. 2015 that showed the tumor had shrunk by half, but still was too large (about 2-3 cm, no mets). I wasn't a candidate for additional radiation, so I had the good ol' APR surgery in May. That all went pretty well, and even though the bag was a big adjustment, I was grateful that the cancer was GONE!

I returned to work 4 weeks after surgery (too soon, but I had missed so much time) and was gaining my strength back as summer went along. My Aug. PET scan showed liver mets - 2 superficial lesions, one on the left (just under 2 cm) and one on the right (just over 2 cm).

There was talk of sending me to MD Anderson, but my doc presented it to our tumor board, and they came up with a plan we all feel good about. Last week, I started 5FU and cisplatin. Got the pump off on Tuesday, and today is the best I've felt energy/nausea wise.

Next week, I have a consult for Radiofrequency Ablation on the right tumor, then Cyber Knife on the left.

Even though this is not the update I had hoped to make a year later, I am grateful to be here and feeling confident (though a bit shaken). Reading how all of you have/are working through similar struggles helps so much.

A friend gave me an excellent book, "Radical Remission," which has been very inspiring. It's about people who have survived dire cancer diagnoses, and the author looks at 9 common traits among them. Much of it is common sense, but well-done and a good way to stay positive.

One other thing I wanted to share - the hair loss definitely was rough last year. It's grown back thicker than ever, though I expect to lose it again. I bought a wig last year, but never felt comfortable wearing it. Instead, I used Buff head wraps. They come in a variety of nice-looking prints and fabrics. They were so comfortable and easy.

Thank you again for all your tips and support!

Lisa

 

 

 

 

 

EvelynB

Lisa1028 said:

One-year Update

Hello, to all of the wonderful folks on this site. I've been checking back here and there throughout my journey, but today is my first post since the one above from last year.

First, thank you all for your support and good suggestions. This board has been increcibly helpful.

After completing my chemo-rad last fall, I had a PET scan in Feb. 2015 that showed the tumor had shrunk by half, but still was too large (about 2-3 cm, no mets). I wasn't a candidate for additional radiation, so I had the good ol' APR surgery in May. That all went pretty well, and even though the bag was a big adjustment, I was grateful that the cancer was GONE!

I returned to work 4 weeks after surgery (too soon, but I had missed so much time) and was gaining my strength back as summer went along. My Aug. PET scan showed liver mets - 2 superficial lesions, one on the left (just under 2 cm) and one on the right (just over 2 cm).

There was talk of sending me to MD Anderson, but my doc presented it to our tumor board, and they came up with a plan we all feel good about. Last week, I started 5FU and cisplatin. Got the pump off on Tuesday, and today is the best I've felt energy/nausea wise.

Next week, I have a consult for Radiofrequency Ablation on the right tumor, then Cyber Knife on the left.

Even though this is not the update I had hoped to make a year later, I am grateful to be here and feeling confident (though a bit shaken). Reading how all of you have/are working through similar struggles helps so much.

A friend gave me an excellent book, "Radical Remission," which has been very inspiring. It's about people who have survived dire cancer diagnoses, and the author looks at 9 common traits among them. Much of it is common sense, but well-done and a good way to stay positive.

One other thing I wanted to share - the hair loss definitely was rough last year. It's grown back thicker than ever, though I expect to lose it again. I bought a wig last year, but never felt comfortable wearing it. Instead, I used Buff head wraps. They come in a variety of nice-looking prints and fabrics. They were so comfortable and easy.

Thank you again for all your tips and support!

Lisa

 

 

 

 

 

Lisa

Sounds like you have had a tough year. I am so sorry to hear that you are having to fight this battle again. It seems like you are staying positive in spite of being shaken. We have to keep reminding ourselves that research is being done every day and as long as we keep fighting, there is hope that we can beat this. Thanks for sharing about the book you read. I will definitely check that out. Best wishes to you. Please keep us posted on your journey.   

mp327

Lisa1028 said:

One-year Update

Hello, to all of the wonderful folks on this site. I've been checking back here and there throughout my journey, but today is my first post since the one above from last year.

First, thank you all for your support and good suggestions. This board has been increcibly helpful.

After completing my chemo-rad last fall, I had a PET scan in Feb. 2015 that showed the tumor had shrunk by half, but still was too large (about 2-3 cm, no mets). I wasn't a candidate for additional radiation, so I had the good ol' APR surgery in May. That all went pretty well, and even though the bag was a big adjustment, I was grateful that the cancer was GONE!

I returned to work 4 weeks after surgery (too soon, but I had missed so much time) and was gaining my strength back as summer went along. My Aug. PET scan showed liver mets - 2 superficial lesions, one on the left (just under 2 cm) and one on the right (just over 2 cm).

There was talk of sending me to MD Anderson, but my doc presented it to our tumor board, and they came up with a plan we all feel good about. Last week, I started 5FU and cisplatin. Got the pump off on Tuesday, and today is the best I've felt energy/nausea wise.

Next week, I have a consult for Radiofrequency Ablation on the right tumor, then Cyber Knife on the left.

Even though this is not the update I had hoped to make a year later, I am grateful to be here and feeling confident (though a bit shaken). Reading how all of you have/are working through similar struggles helps so much.

A friend gave me an excellent book, "Radical Remission," which has been very inspiring. It's about people who have survived dire cancer diagnoses, and the author looks at 9 common traits among them. Much of it is common sense, but well-done and a good way to stay positive.

One other thing I wanted to share - the hair loss definitely was rough last year. It's grown back thicker than ever, though I expect to lose it again. I bought a wig last year, but never felt comfortable wearing it. Instead, I used Buff head wraps. They come in a variety of nice-looking prints and fabrics. They were so comfortable and easy.

Thank you again for all your tips and support!

Lisa

 

 

 

 

 

Lisa

I'm glad you posted an update, but am very sorry that you had to go back into the ring for another round.  I commend you on your positive outlook--that is the only way to take this on.  I'm glad you are feeling good today and I hope that will continue for you.  May your consultation go well next week so that you can get the procedures that will get those liver lesions taken care of.  I wish you all the very best and hope that when you are up to giving another update, that you will do so.  Until then, I send my thoughts and prayers and wish you all the best.

Martha

eihtak

Lisa1028 said:

One-year Update

Hello, to all of the wonderful folks on this site. I've been checking back here and there throughout my journey, but today is my first post since the one above from last year.

First, thank you all for your support and good suggestions. This board has been increcibly helpful.

After completing my chemo-rad last fall, I had a PET scan in Feb. 2015 that showed the tumor had shrunk by half, but still was too large (about 2-3 cm, no mets). I wasn't a candidate for additional radiation, so I had the good ol' APR surgery in May. That all went pretty well, and even though the bag was a big adjustment, I was grateful that the cancer was GONE!

I returned to work 4 weeks after surgery (too soon, but I had missed so much time) and was gaining my strength back as summer went along. My Aug. PET scan showed liver mets - 2 superficial lesions, one on the left (just under 2 cm) and one on the right (just over 2 cm).

There was talk of sending me to MD Anderson, but my doc presented it to our tumor board, and they came up with a plan we all feel good about. Last week, I started 5FU and cisplatin. Got the pump off on Tuesday, and today is the best I've felt energy/nausea wise.

Next week, I have a consult for Radiofrequency Ablation on the right tumor, then Cyber Knife on the left.

Even though this is not the update I had hoped to make a year later, I am grateful to be here and feeling confident (though a bit shaken). Reading how all of you have/are working through similar struggles helps so much.

A friend gave me an excellent book, "Radical Remission," which has been very inspiring. It's about people who have survived dire cancer diagnoses, and the author looks at 9 common traits among them. Much of it is common sense, but well-done and a good way to stay positive.

One other thing I wanted to share - the hair loss definitely was rough last year. It's grown back thicker than ever, though I expect to lose it again. I bought a wig last year, but never felt comfortable wearing it. Instead, I used Buff head wraps. They come in a variety of nice-looking prints and fabrics. They were so comfortable and easy.

Thank you again for all your tips and support!

Lisa

 

 

 

 

 

Lisa.....

Hi, and let me say I am so sorry for the year you have had.  I will surely have you in my thoughts and prayers as you face yet another challenge. Its funny how we just do what we have to do when we have to, and you will as well, then soon, this too will be a thing of the past!

I recently completed treatment for a recurrance in my lung. I had surgery to remove the left lower lobe followed by three months of 5FU / Cisplatin. (I do have an ostomy as a result of initial treatment 4 1/2 years ago) Today I am feeling well and will be scanned again in late Oct. or early Nov. I won't lie, the cummulative effects of chemo knocked me on my butt! Yet, that being said, during those three months I completed a college course on line and made the flower arrangements for my daughters wedding, as well as other planning and then the wedding itself!! If I have any advice it would be to listen to your body....if tired-rest, if hungry-eat, if angry-yell, if anxious-cry, but most of all keep looking ahead.  Oh.....drink fluids whether you're thirsty or not, lol.

Keep us posted.....

katheryn

TraceyUSA

Lisa1028 said:

One-year Update

Hello, to all of the wonderful folks on this site. I've been checking back here and there throughout my journey, but today is my first post since the one above from last year.

First, thank you all for your support and good suggestions. This board has been increcibly helpful.

After completing my chemo-rad last fall, I had a PET scan in Feb. 2015 that showed the tumor had shrunk by half, but still was too large (about 2-3 cm, no mets). I wasn't a candidate for additional radiation, so I had the good ol' APR surgery in May. That all went pretty well, and even though the bag was a big adjustment, I was grateful that the cancer was GONE!

I returned to work 4 weeks after surgery (too soon, but I had missed so much time) and was gaining my strength back as summer went along. My Aug. PET scan showed liver mets - 2 superficial lesions, one on the left (just under 2 cm) and one on the right (just over 2 cm).

There was talk of sending me to MD Anderson, but my doc presented it to our tumor board, and they came up with a plan we all feel good about. Last week, I started 5FU and cisplatin. Got the pump off on Tuesday, and today is the best I've felt energy/nausea wise.

Next week, I have a consult for Radiofrequency Ablation on the right tumor, then Cyber Knife on the left.

Even though this is not the update I had hoped to make a year later, I am grateful to be here and feeling confident (though a bit shaken). Reading how all of you have/are working through similar struggles helps so much.

A friend gave me an excellent book, "Radical Remission," which has been very inspiring. It's about people who have survived dire cancer diagnoses, and the author looks at 9 common traits among them. Much of it is common sense, but well-done and a good way to stay positive.

One other thing I wanted to share - the hair loss definitely was rough last year. It's grown back thicker than ever, though I expect to lose it again. I bought a wig last year, but never felt comfortable wearing it. Instead, I used Buff head wraps. They come in a variety of nice-looking prints and fabrics. They were so comfortable and easy.

Thank you again for all your tips and support!

Lisa

 

 

 

 

 

Lisa

I started reading the post from last year without realizing it was an older one....boy, could I relate to the hair loss and realization of it all.  I hated the short hair at the time it was coming in but looking back at pictures now, I think it looked pretty good - LOL!

Anyway, I'm glad you came back to update us and am sorry to hear you are still having problems.   When I first read your update, I noticed your posivity immediately.  Thank you for recommending the book, I'm putting it on my need to read list. 

Please let us know how things go.

Sending prayers and positive energy your way,

Tracey

lizdeli

TraceyUSA said:

Lisa

I started reading the post from last year without realizing it was an older one....boy, could I relate to the hair loss and realization of it all.  I hated the short hair at the time it was coming in but looking back at pictures now, I think it looked pretty good - LOL!

Anyway, I'm glad you came back to update us and am sorry to hear you are still having problems.   When I first read your update, I noticed your posivity immediately.  Thank you for recommending the book, I'm putting it on my need to read list. 

Please let us know how things go.

Sending prayers and positive energy your way,

Tracey

Lisa

Lisa,

I am so sorry you are dealing with all of this.  It is a difficult road, but as you have seen from this site, there are several here who have endured similar paths and their journeys are such an inspiration.  I wish you healing and strength.

As a side note, I had Cisplatin and 5FU and didn't lose my hair.  It thinned and looked crappy but it never fell out.  I know at that end of the day what matters is the success of your treatments.  I will keep you in my thoughts and prayers.

Liz