Starting Chemo in April 2014

So I'm boo hooing too. My hair is finally coming out in handfuls. I knew it was coming but I'm sitting here crying. Damn. And I have blood work today.

Hey mmtagirl, I'm trying today, but I'm crying today too.

I cried last night as the doom and gloom thoughts hit me out of nowhere. I'm waiting for my hair to fall out. Day 14 for me and the buzz is still there!  I find that I've been fairly positive when I keep busy. A friend of line said that I rock the skinhead look. As a musician this was very positive for me as I said - yeh - I'm a punk rocker!!

Let's keep strong. 

My hubby has colitis and has taken pills everyday for more than 15 years and he rocks. Colonoscopy every 5 years and he's doing fine. If he can do it I can pull this off with ur help!

Keep the focus. Let's live!!

Thanks so much ladies. Linda I love thinking about what you said about crying letting out toxins …….that is a good purpose for it!! 

Merg I did the same thing when my hair was coming out.

mmtagirl I am the same way with the mirror. It still shocks me everytime I see myself. This is hard but we can do this, we are ok…..needed those reminders today girls. 

I also look in the mirror and don't completely recognize myself these days. I prefer to think of it as Warrior Janet   

The cisplatin my MO gave me Friday better be working because it knocked me on my butt yesterday! I had to go home from work at lunch and take one of my heavy duty narcotic painkillers because the Tylenol just wasn't cutting it. I feel better today but yeesh! At least I will know for  the next time I get it on 5/30. This week and next week I'm just getting my usual weekly dose of Taxol. 

Fight on my fellow warriors!

merg - rock the head!!  Love it

I have to share in a effort to keeping humour alive - I hope that I don't offend any - this is all in humour

Last night I went to my hubby and put my head against his and said " gives a whole new meaning to giving head huh?"  We both had a good laff

I look at myself in the mirror and say - hey there's more pepper in the salt and pepper than I thought. Maybe I won't colour it when it grows back

Plus I can now put on a shirt and change it without ruining  my hairstyle!!!!!

Woo hoo!!!!!!!

Yes, I do love not having to spend 20-30 minutes fussing with my hair in the morning!!

Hello! It's been a few days since I've been on the website, so I'm not sure what everyone's up to or if this question I want to ask has already been addressed. I'll catch up soon. But for now, I have a quick question about getting fitted for a wig at a local wig place. My hair started falling out yesterday (12 days after TC infusion), so I want to go get fitted for a wig soon.  My question is this:  Are we supposed to give a tip (gratuity) to the person who helps us select and fit the wig?  And if so, what % range is the norm? Thanks in advance y'all!

Mommyq: I did not tip this person. I got a real hair wig and felt that the amount I spent was more than I should have, and honestly, I didn't even think about it. I don't think it would be expected given the state of mind most of us are in when we are there. I live in Michigan.

DDKath70: Adding on to what Footballnut said above, I think the feelings you mention are felt by all of us at one time or another. I recommend taking it day by day. Some are better than others, for sure. This group has helped me a ton. I really feel so less alone by hearing about everyone's experiences. 

I didn't share my diagnosis with the broader friends and family group, until the night before my first surgery, which was a couple months in. I didn't want to burden anyone or get the stupid questions. But I finally shared that night and it actually encouraged many of my friends and family to get checkups which they wouldn't have done otherwise, I think. And people have been remarkably encouraging, for the most part. So I'm glad I shared. I don't share a ton on Facebook, but when I do I keep it light. I'm sure most cannot understand like this group can. I am also journaling, which I plan to launch in a blog some day (my background is as a copywriter so it feels like the right thing to do). 

Here's one of my posts, if you need a chuckle:

Here are the top 10 benefits of a hair free lifestyle:

10. People confuse me for Sinead O'Connor from back in the day
9. My 7 y/o thinks I look like a pirate with the cap-scarf
8. Getting-ready time slashed to about 15 minutes from start to finish
7. More space on the bathroom counter
6. Save big on hair cuts and color
5. No more styling dilemmas
4. Temporarily save the environment from all those products' plastic tubes and bottles
3. Rain, it just doesn't matter
2. Wind, see above
1. Get to freak out staring strangers by simply removing the hat 

Best of luck to you and everyone!!!

Thank you, I appreciate you taking the time to read my story and pass on your advice. I'm definitely taking it one day at a time, and even though I've been through two surgeries and so much bad news, I still feel like it's been the easy part of this nightmare. The hardest part is ahead of me, and that alone is scary. 

The biggest reason that I'm not sharing on FB is because I was laid off in February (boy, do I sound like a barrel of laughs or what? I'm not used to having so many problems - but such is life I guess) and have been doing freelance work for a few people that I'm friends with on FB. I don't want my diagnosis or the fact that I'm doing Chemo deter them from sending me any more work. I'm extremely thankful for having the opportunity to work from home and make my own hours through this, but I do need to work and can't take any chances of it getting cut. 

jhodro: I love your list, and am thinking about how much I am going to save over the next few months on cuts/color. I've racking up quite a bill each month.  

I went out this weekend and bought a bunch of scarves and ordered a few beanie's online. I also ordered one wig, but we'll see what happens with that. I live in Arizona, and quite honestly, I think it will be way too hot for the wig. I like to have it if I need it. 

I still have a few tests CT, bone scan, Port, EKG to get through before starting, and my Dr wanted to see what the EKG showed before making the final decision on AC-T, but it sounds like that's where I'm headed. My MIL is flying in on Friday and will be staying with us to help, and so my DH doesn't have to take so many days off. He didn't want to leave me home alone after treatments,  just in case. He works all over, a different place every day. 

I was wondering if you all wouldn't mind sharing some of the products (creams, mouthwash, etc.), medications (nausea, headaches, etc.) or home remedies that have been your saving grace through this so far.  That would be so helpful. I know that there is a large list on a thread that the moderators put together, but would love to hear from you as well.

Thanks again!

dd

ddkath70: i totally understand the freelance dilemma!! I am in advertising, so I have taken time off so I can avoid going to the client site for as long as possible. I also used to freelance (for about 8 years) and was doing that when I had my son, so I didn't tell any of my clients about it at all, and continued to work. Luckily I had a few projects from home and could work on them throughout my pregnancy, delivery and recovery. You'll just need to adjust your working time to account for treatments - you'll have good days and bad and you'll know fairly early on how that will go. Do you have any freelance partners that you could reach out to for backup if you need it? You could do it fairly seamlessly so the client wouldn't even have to know. I'm not sure what business you're in, I am was a copywriter/marketer, but I totally feel for you.

Welcome to newbies here - none of this is easy. Yes, you will cry or scream or have a pity party - but then you will move on because you have to. 

Hair loss - I am loving how quickly I can shower and get ready in the morning :-) The wig looks better than my real hair and it doesn't have bad hair days :-)

Am at (or is it in?) nadir right now. Had my "off week" blood work done and just heard from my MO office - WBC are 1,400. They were 500 2 weeks ago today when I ended up in the hospital. Neutraphils are 600 - they were 100 2 weeks ago. Got the usual warnings. What are everyone's WBC and ANC when in nadir?  I had 20% dose reduction last week so hoping that works and hoping Neulasta kicks in more sooner than later. 

I felt extremely fatigued yesterday, and had a temp in mid 99's. But feel better today with normal temps, no shaking, no chills. 

Was hoping to not have such low counts again - but now will be just happy to stay out of the hospital this time. 

A little down that I will basically have no life for the next 3 months while I finish up this chemo. I have 2 more treatments of A/C then 8 weekly treatments of Taxol/Herceptin.  Maybe there isn't as much of a nadir with Taxol?  I haven't taken a look at the weekly Taxol thread yet ....

Feeling bored which I am taking as a good sign - better than feeling sick I suppose! 

jhodro great list!  I have a few more to add if I may

- no static or flyaway hair to worry about

- I can change my pull over tops as often as I want and not worry about messing up my hair!!  Lol

You know I was very anxious about losing my hair. I cried and got very depressed. Now I love it. I appreciate my face more. When I was a little girl my grandmother would always tell me to get the hair out of my eyes. It only took 50 years!!

Lol

OK, I just caught up. Sorry for the slow responses. Hope all the Moms had a good Mother's Day!

linda505: Thanks for the tip on drinking stuff other than water. I switched to apple juice, lemonade, and Vitamin water, and the variety and taste make is much easier to stay hydrated!

ColdInCanada: Thanks for clarifying what you mean by exercise. I feel much better now. Oh, and the snails said "Hi!." Oh, and I spoke too soon regarding the eye twitching. My left eye started twitching a bit about 3 days ago. Now my right eye just started today. DOH!

LovebeingNana: Thanks for the tip on changing nausea meds to prevent headaches. I'll have to mention that to my MO next week at my next infusion. And hang in there. Chemo is tough but we're tougher and we'll get through it! One day at a time.

Jaimieh: Hi! You said you lost my eyebrows on TC last time about 6 weeks after all your chemo was over. How many infusions of TC did you have? I'm just trying to prepare for when mine will fall out. I'm to have 4 to 6 infusions, depending on how my body handles them.

Golfingirl: I too experienced dizziness everyday until about 8 days after my infusion. About 6 days after the infusion, I noticed that my heartbeat was rapid. I took my pulse and found that I had a resting heart rate between 100 - 120 bpm. I talked to my MO and she wasn't sure what the cause was, but we both agreed that maybe it was anemia causing it.  11 days after the infusion, it dropped just below 100 and it's been hovering there for the past 3 days. She told me to monitor it and go to the ER if it went above 120 AND I had any chest pain or shortness of breath.

Timbuktu: Day 14 is the last day of nadir for the C part of your TC (Nadir is days 5-7 for T, days 10-14 for C), so that may be why you're tired. I think rest is probably better than pushing it if you feel tired. It's like your body is saying, "Hey, take a rest and heal!"

mikishelly: Glad to hear you made it through your WBC scare! Whew!

Ddkath70 & babygoose: Welcome. You've found a great group of ladies here that are all very supportive and helpful. Together, we will get through this. 

Ddkath70: As far as level of sharing, it's a personal preference. I chose to share with family, closer friends, and co-workers, but not with my Facebook group. It's just what you're comfortable with. But all the people I've shared with have been greatly supportive, so it might help to share with some people. I understand why you don't want to share with your FB network...makes sense. Sorry to hear you just got laid-off. Hang in there. You'll get through this. BTW, I have the port, and had the CT and bone scan recently, so let me know if you have any questions about those. Also, I'm on TC. My MO said the A part of the A-CT is rougher on the heart so she didn't recommend it for me, since I'm young and my heart will have to keep me going for a long time. That's great your MIL will be flying in to help. My MIL also came in for 2 wks and it was great. She cooked and cleaned and got the kids to school, so my husband could continue to work. Regarding products, I had to buy unscented body butter (Body Shop Aloe) and soap (Dove) because any scents made me nauseated. Biotene mouthwash is nice because it's minty/refreshing for when your tongue feels and tastes weird. Baking soda/salt/water mix (1/2 tsp baking soda, 1/2 tsp salt, 4 oz water) seemed to keep the mouth sores from occurring. Flushable moist wipes help with any irritated skin after bowel movements.

Footballnut & jhodro: Thanks for letting me know about the tipping not being required. I am just the worst at knowing when I'm supposed to tip or not! I think I'm going to go tomorrow to get fitted. 

Have a good evening ladies! 

Makelemonade: I'm doing the weekly Taxol and Herceptin now. I was lucky I didn't have to do the TC or AC. I definitely had SEs, but I feel they are more fatigue and then annoying things, like acne, a messed up cycle, C that quickly turns to D (but it's not horrible, just enough to be, like I said, annoying. And as far as counts - I've maintained my numbers from week to week. I haven't had anything drop to far out of the 'normal' range. So no neulasta for me, so far. 

I get treatments Tues and that day is out - exhausted. Wed, could be out, depending on my sleep Tues night from the steroid. I don't take the extra steroids at home before or after, and then the rest of the week, I'm very tired. I also have some aversion to certain foods, but I'm not a huge food lover to begin with. Have the dry mouth, water retention, etc. I also have some pretty persistent heart burn, but it's remedied with over the counter Pepcid. Finally, have lots of runny nose issues, that ended up giving me fluid in my ear - which is a typical issue for me, so I'm taking Claritin D to keep that under control. 

I just finished my 5th treatment. I'm 3 on, then on the 4th week H only. I just did the second treatment of the second round this morning. The H only week (the week I lost my hair), I felt mostly myself.

Hopefully this helps you!

Chknfeet: Sorry to say, but I had a ton of hair, although I had cut it shorter into a JLawrence pixie/bob, and mine was noticeably patchy on day 3 after it really started coming out, plus it was a huge mess. I had it buzzed on a Thursday and my work had an event with Sheryl Sandberg from Facebook for 750 people the next day and I wasn't prepared for the hair loss (had been told by MO it might not come out on weekly treatment), so I hadn't gotten a wig. Only had cap/scarfs that tie in the back but have elastic, but had found some cute/comfy ones. I rocked that scarf at a 750 people event, and didn't feel bad about it in the least, and got lots of compliments - someone even said I was radiant. Haha! By the time you get to that point to buzz, you'll be more ready for it. Hope this is helpful. I know I tend to go on.

Have a great evening, all!!