Starting Chemo March 2016
Comments
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Hi! I'm popping over from the September, 2015 group. I had 4 rounds of dose-dense AC, followed by 4 rounds of dose-dense Taxol. I'm almost 8 weeks PFC (post final chemo), and almost have a decent GI Jane hairdo. Two more weeks of radiations, and I'm on to Tamoxifen and life after active treatment.
Jonsey, here's my two cents for planning purposes. One thing I didn't know starting this journey was how much blasted time it took every week. Each chemo infusion took 4-6 hours, plus I had to go back the following day to get an immune-boosting shot. That was a day off work plus a doctor appointment every other week (dose-dense is every two weeks, but some people have infusions every three weeks). Plus, some doctors want you to come in for blood work on the week you don't have treatment. Most MOs do blood work before each infusion. I was lucky in that mine did it in her office just before an infusion. Many others reported having to go to the hospital the day before each chemo treatment to have blood drawn. When you meet with your MO, ask specifically how often you'll need to come in and for how long. This will form your Plan A, or your best-case-scenario plan for chemo. Plan A is easy, because it's based on known variables.
Plan B is harder because you have no idea how your body and brain will react to chemo. Most people seem to have a day or two following treatment that they're somewhat non-functional from side effects. Also, some chemos require you to take steriods before and after an infusion. Many people find that steriods prevent sleep. I am a writer/editor by trade, and was part time before diagnosis. My schedule is flexible, and chemo didn't impact the number of hours I was able to work. Had I been full time, it would have. While chemo brain didn't impact my daily life too badly, it did affect my ability to edit and write scientific journal articles, do analysis, etc. Fatigue was also a problem. Active things, like folding laundry, were generally OK. Sedentary activities, like reading and editing, were difficult, if not impossible at times. Looking over some work I did last fall left me underwhelmed.
I apparently had a pretty easy time with chemo. Many people in the September group ended up taking a leave of absence from work during chemo. I got lucky and didn't need to. I did have a Plan B in place in case I ended up in the hospital or with side effects that left me non-functional. It reminded me of planning for maternity leave.
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It looks like I will be joining the March 2016 group. I'll be having carboplatin & taxotere. I'll be traveling from NW Arkansas to KU Med in Kansas City for treatments. I'm terrified. I never
thought I'd be having chemo. I was always a firm believer in more natural approaches to cancer. I am still very integrative. But, I have a family & feel as though we need to make the best
decision for the longest survivablity. The MO in KC was wonderful and very confident in this regimen. I am very worried about long term complications. Neuropathy. Chemo brain.
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Hi ladies, April 2015 here. Just wanted to stop in and say welcome to the jungle! You will have more good days than bad days, and eventually it will end! Stay strong!
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azrescue - welcome to our little group, though sorry you find yourself here. Wow, you're traveling a long way to have treatment - will you be going each time for treatment, or going and staying there for the entire course? There are many ways to integrate more natural and holistic healing into your chemo regimen, just check with your Onc before you take any supplements to ensure they don't interfere with or have a negative effect on your chemo.
I've heard about adding Carboplatin to the regimen, and have been trying to research it. Can you share anything you've been told about why this drug choice - better outcomes, improved survival, newer treatment, etc.?
Take care,
Nancy
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Welcome azrescue. Sorry you find yourself here. I am not familiar with the treatment you described. It also seems like a pretty far drive. Hope you are able to manage. I share your worries about neuropathy and chemo brain, my worst fears too. May they be unfounded.
Thanks Scotland for your PlanA/B description. I am sorry to hear chemo brain affected the quality of your work. I suspected that and hope it is not the case for me. Still trying to finish my dissertation. Has it improved at all yet for you? If it has, how long did it take?
Wishing everyone a good week!
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Jonsey, chemo brain lifted a good bit a couple of weeks after I finished AC. About three weeks after I finished Taxol, I woke up one morning and it was just gone. Good luck finishing your dissertation!
Neuropathy takes a bit longer to completely resolve. I still have a bit in some fingers and toes eight weeks after finishing chemo. This is normal, and it's slowly improving. It's very common to not finish Taxol because of neuropathy. I had dose-dense (4 treatments, every two weeks), and my last two treatments were reduced slightly. It seems that for people who had weekly Taxol (12 weekly treatments), MOs wanted women to finish at least 10 and there was also some dosage adjustment. The important thing is that your MO will work closely with you, and should talk with you before each treatment to assess the risk/benefit of treatment, especially for the Taxol family of drugs.
Best of luck to all of you! Chemo isn't a walk in the park, but it honestly wasn't as bad as I thought it would be.
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NancyHB ~ It is a bit of a drive (3.5 hrs by car) (a little over an hour by air). We will make the trip for each treatment. At least it's not weekly, as I am sure I would not be able to maintain that. We just really feel like we are getting better care there.
As for the carboplatin ... I guess it's been around since the 1980s. However, it's been more recent that they began using it on Triple Negative. So, the dr said it's been VERY effective at basically melting away the tumor prior to surgery. So much so that when they go into surgery they are only able to recognize where the tumor was due to the markers. The regimen that I will be doing is the carbo with the taxotere. The idea is that they are trying to get away from the AC. As the AC typically has more side effects, and more long term side effects. I guess the down side is that there isn't any long time frame studies yet. But the theory and hope is that ... the better outcome they get initially will translate to a better long term outlook. I'm trying to stay positive & concentrate on the next step. It looks like I will most likely be starting the first week of March.
Jonsey22 ~ I hope I can maintain too for the traveling. Sorry you are here as well. But, we'll get through this rough patch. And be stronger for it.
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Azrescue, I am so sorry that you have to go through any of this at all. I wanted to let you know that your journey will be a little similar to my own. I too was triple negative, had neoadjuvant chemo, and went away from home for treatment every 3 weeks. I flew from Arizona to Illinois for chemo treatment from April 2015 until September 2015, had my surgery there in October, and will return there for more surgery and follow-ups. I did 4 AC treatments and 4 Tax/Carb treatments. After the 4 AC treatments, the tumor was no longer visible on mri, but knowing about the effectiveness of Carboplatin on triple negative I went ahead as scheduled and finished. Anyway, traveling for treatment brings on a lot of extra details to worry about, but if you really trust your medical team...well it's worth it 1000%.
Best wishes for limited treatment side effects for all of you. Hopefully this group will bring you as much comfort as the April 2015 group brought me.
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Hi Everyone, what an amazing thread. I have been lurking here for over a week. Now that I have all of my "details," I can start posting where it makes sense. I am starting chemotherapy on Thursday, 3/3/2016. My regimen will be TCHP every 21 days for 6 cycles. The "T" piece will be given weekly.
Like NatsFan, I am also in IT, and I work in the management consulting field. I'm concerned about losing sensation in my fingers and about cognitive function. And lethargy and weight gain. And all this stuff...well, frankly, there's almost nothing I'm not concerned about.
I haven't figured out how to set my signature, I'll get there. I've posted on other internet forums so I'm sure there's a link.
As for me, I received my diagnosis on 2/12/2016. I started out with a mammogram and ultrasound on 1/20/16 for a lump + inverted nipple that I found. The mammogram alone was not alarming for the palpable mass I found -- the instructions were, "do a 6-month follow-up" -- that particular fact has all of my girlfriends freaking out and I don't know what to tell them. I am really sad because we are all told that our mammograms will save our lives (and I think we all assume mammograms will save us from cancer treatment, period...that's the message...it's not true in my case and the oncologist said yes that happens).
Thankfully the ultrasound showed irregular edges and enlarged lymph node, because it sent me to biopsy on 2/9/16. That biopsy showed IDC, right, 2cm with lymph node 2.7cm. ER+, PR+ and HER2+. My CT abdomen/pelvis/lung and CT bone are clear. My breast MRI shows my tumor and my lymph node, plus other areas of concern inside the right breast. I will be a mastectomy candidate because of the additional, numerous areas of concern in the right breast. I have genetic testing scheduled for 2/29/2016.
My immediate goal is to read thru that enormous chemotherapy shopping list and get a big list of questions for my "chemo education" appointment on Friday. I am having my port placed on Thursday 2/25. My family and friends and employer have been amazing.
My immediate question for the group is a general one about pain management for chemotherapy treatment and for the other annoying procedures that go along with this phase. My going-in position is that I want my pain managed, and I want it managed WELL. I know people who get sent home with vicodin for a bad cough for goodness' sake. Now, I'm not saying that vicodin is what I need. But what I want to know is, can I have high expectations that my medical team should be responding to my pain and helping me figure out how to manage it thru various means? (not just analgesics but preventative, proactive, and other measures?) I feel like if I have cancer it is bad enough, if I need to keep working during treatment, if I'm going to lose my hair, if I'm going to need to force myself to freaking get up and walk when I don't want to, and my nether-regions are going to burn from chemo drugs, and etc and etc...what can I expect of people to help me out? My biopsy was so amazingly poorly managed that I cringe thinking about it...I have a different medical group in charge of it but I am definitely now very afraid of the pain. Talk to me about what I should expect of my team.
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I did 6 rounds of TCHP. It was not painful. A lot of fatigue. Some nausea. Mainly just stay on schedule for your anti-nausea meds even if you don't feel like you need them. I had infusions on Wednesdays. It will be long infusion days. Most rounds I felt okay on Thursday and Friday following infusion. Saturday and Sunday after infusion were the worst where I just wanted to stay in bed all day, and did that as much as I could. Gradually you start feeling better. I would be back to feeling like normal in time for the next infusion.
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I grow more anxious with each nearing day of my 1st chemo. And I have had friends and family that I am sure in some way mean well BUT ... make comments like "you will be so sick you won't be able to take care of the kids" That just so isn't what I need to hear right now. Anyone else going through this too?
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Chemo has come a long way in terms of comfort, but the bottom line is that you'll respond to it individually. I had no nausea or diarrhea, but I did feel like I was on the tail end of the flu for a couple of days each cycle. Some women in my groups (March/April 2015) were running around and biking, while others were nauseated or had low blood counts. I walked on a treadmill every day, including infusion day. Some women didn't feel up to walking to their mailbox. I think it's a good bet that you'll feel dragged out and will appreciate support, but you won't know if you can take care of the kids until you're in it and see whether you can.
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Welcome BKGameGirl! Sorry I don't have ANY answers to your questions. Just wanted to welcome you. I think I will finally get into a CT scan tomorrow if things go as planned and maybe back to MO on Wednesday. I still haven't had my training, actually I still haven't been told the scans etc. are okay. I guess that comes first. I have no idea how to manage SEs, but I think if you ask, you will likely receive. I am over an hour from hospital where I will get chemo, so I plan on asking a lot and being as proactive as possible. I hope none of us have the neuropathy and chemo brain.
azrescue, I find that lots of things people say throw me. I think sometimes people just don't get it an sometimes it is me in a bad mood. I had a friend today ask me if I was eating clean yet because it must be all the processed foods etc. people eat nowadays that makes young people get cancer. I just stared at her. I drink a natural green smoothie every day and try to eat as many fruits and vegetables as possible. Then I think, why do I find myself defending myself to people who are supposed to be my friends?
It sounds like I will do 4 rounds of TC. That is assuming all the tests come back clear. Congrats on that BKGameGirl!!! Something to be happy about.
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Welcome BKGameGirl. We are all in this together. I can't even think about more pain at this point. I'm having so much from the TE's I want to rip my chest off.
I get my port placed on Thursday. It is a local and IV med only. Should be pretty easy. I'm sure someone will say that ibuprofen will take care of any pain I have at home......to which I will say I'm allergic.....to which they will say then Tylenol......to which I will say I can't take much Tylenol it gives me migraines and it doesn't touch my pain anyway.....Ugh.
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Anyone have any ideas how to deal with the hair issue with my kids??? I have an appointment on Wednesday to get it cut very short (not shaved yet). I thought it would be best if I did it in a couple stages both for my kids and for me. Losing my hair is a tough one. I keep telling myself it's only temporary and grows back BUT still it's hard.
I was hoping to try to make it not seem scary or sad. Something fun. I was already thinking the kids can help me pick out hats, scarves, wigs. But how do I prepare them for the initial shock of it all. My 9 year old son is already upset about the surgery & the idea of a mastectomy. In fact, he said he doesn't want me to change. And specifically brought up how he doesn't even like it when I go to get my hair cut. Ugh! I don't want them to hurt. I remind him that no matter what I am still mommy and I still love them very much and that we will still have fun, etc.
Should I make it a fun family thing? Or should I go by myself? How do I make it seem fun? Haircutting party?
Sorry I feel as if I am rambling but I am very anxious over this.
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Like others have said, chemo for me was more like coming down with a nasty flu bug every three weeks with all the accompanying fatigue and aches, but I wouldn't say that it was at all painful. Some people have some pain from the Neulasta shot that you may be given the day after chemo to keep your WBC from crashing, but I wasn't bothered by the shots at all. A day or two after chemo I was fine - the steroid buzz kept me going. Three or 4 days after chemo I'd crash for a few days, like having the flu. I'd slowly recover the next week, and early on by week 3 I felt fine, and could work out.
However, the effects were cumulative for me - the "flu" period got longer each treatment, and the recovery period also gradually got longer. By the last few treatments I was not able to exercise during Week 3 at all - dragging myself back and forth to work pretty much used up all of my energy. That said, two weeks after my last chemo treatment I was back on the elliptical and back in yoga class. Initially I could do very little with either of them, but I kept at it and gradually got my strength back. Fatigue was the biggest issue for me, but I was still able to work full time during chemo, taking off only when I needed to. Fortunately my workplace was supportive, and no one raised an eyebrow if they came into my office and I had my head on my desk resting for a few minutes. My WBC tended to drop the week after chemo, so during that time I made a barricade with chairs all around my cube with signs asking people not to get too close to me. Everyone was very accommodating about staying away when I was at risk and had no problem shouting over the barricade.
Anti-nausea meds have come a long way - I never felt any nausea during chemo. I didn't feel much like eating anything except bland foods - white rice, mashed potatoes - much like when you have the flu, but I never felt sick.
Being bald was really not as bad as I'd feared. I had a very nice wig that I wore for the first few weeks, but after that I just wore baseball caps. If people wanted to stare, that was their issue. I did wear longer dangly earrings to fill in the empty space a bit and was fine. Friends and co-workers bought me all kinds of baseball caps, and by the end I pretty much had a cap to match any outfit I wore. I also got a lot of nice earrings as gifts - I still wear most of them!
Az - oh, yes - stupid comments. Welcome to Cancerworld. You'll find several hysterical threads on BCO recounting stupid comments that people have said to us - you are absolutely not alone. My personal pet peeve was when someone started to tell me about someone else they knew who had cancer and had died. I got the point that when someone started one of these stories, I'd interrupt them and ask if their story had a happy ending. I'd tell them if it didn't have a happy ending, they needed to stop right there as I really didn't need to hear that kind of stuff right now. Sometimes you have to be borderline rude to shut up some of these idiots, but there's no reason you should have to listen while someone makes stupid statements. The next time someone says something like that to you, just look them in the eye and say, "Why would you say something like that to me when you know I'm already scared and stressed?" Don't bail them out - let them stammer and explain why they would say that to a cancer patient. Maybe being called on it will teach them to think before opening their mouths next time. And if they don't have the grace to be embarrassed, then avoid them, at least while you're going through treatment. You have cancer, so one thing cancer does for you it that it frees you from social obligations right now. Go places and see people that you want to see, but don't hesitate to swipe the cancer card when you need to, especially when you need to avoid stressful people, idiots or Debbie Downers.
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azrescue - I bought the book The Year My Mom was Bald off of Amazon for my oldest. It explained about the different parts of treatment and gave her something to refer to when she wanted.
We explained about the medicine making my hair fall out. My oldest was concerned about it and was telling me she would want me to wear hats and hooded sweatshirts so she wouldn't have to see it.
I got a pixie cut nine days after my first infusion. I hated the hair cut, but it was a good transition for the kids. They were in school when I had it done.
Six days later my hair started falling out. I spent the morning tugging little clumps of hair out. The kids saw my very thinned out hair before going to school. My husband buzzed it later on that morning.
I had a hat on when the kids came home from school. Their curiosity won out and both girls (7 and 5 at the time) wanted to see it. My oldest actually said it wasn't as bad as she thought it would be. Her sister wasn't as thrilled and liked the hat better. But it became a non-issue for them very fast. I normally go hatless at home. I never went completely bald and probably have 5-10% stubble.
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Thank You all for the advice and encouraging words.
Skittlegirl ~ I will look for that book on Amazon. I certainly think it will be 9 yr old son that has the most difficult time with it. How was the carbo and Taxotere?
NatsFan ~ love the words of advice on how to deal with the stupid comments! Thanks!
I just got the call from KUMed and I start chemo on March 2nd. ... Here we go ...
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azrescue, my kids are 13 and 9. My boy is the 9yo. He is already an anxious little boy and takes meds daily. It has been hardest for him. He has called every day from school often crying and worrying about me. We found a good therapist for him and I am already seeing him using some good strategies. He became very teary eyed when our family discussed that I would likely lose my hair. He didn't want me to change. I kept my attitude very nonchalant and said hey I change my hairstyle all the time, no big deal, it will grow back. And we discussed all getting our hair buzzed together (not my daughter! Lol) he hasn't decided if he will do that or not since he usually lets it grow in the winter.
Today I got my hair cut shorter than usual with just one long piece in the front (kinda buzzed the rest). Both kids met me after school with smiles saying they loved it. Whether or not they really did doesn't matter. They are getting used to the idea and know I'm still mommy.
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Bummed out. My CT results won't be in fast enough so I have to push follow up with my MO to Monday. More waiting for all the test results and more waiting to get this thing started. Haven't even done the training yet. Kind of a down day.
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Sorry Jonesy. That's really sucky. I would be down too.
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Hi ladies. Sorry I haven't been around to update, connect and support. I'm having a minor meltdown about all of this (i'm usually pretty strong but sometimes it just sucks).
Jonsey, I'm sorry you're having a down day. This is the hardest part, after waiting for test results - waiting for treatment to begin. Once it started I felt more empowered and strong, as if I was doing something proactive. I hope you find do out your start date soon.
Azrescue, it's easy for the hair to become a big source of anxiety. Don't be too hard on yourself - this whole experience is tough. My kids are adults, but my granddaughter was 5 my first time ever around. She never minded me losing my hair, said it made me "look weird - but weird is okay and even good." My son actually buzzed it for me (as I had done for him for so many years and it was actually an emotional bonding moment for us). I never wore a wig, but rather scarves and hats, so it was kind of obvious. After a month that or so I started going topless - no hat or scarf or anything. People thought it was an open invitation to ask me about my cancer. Many assumed things (like the woman who said, "well, if you have to be bald I hope you at least got new books out of the deal"). I learned to realize that what others said was more about them than it was about me. But it was still sometimessed really hard.
Melgirl, good luck with the port placement. Pain meds must be tough for you to tolerate, that's awful. I'm still a little tender from last Monday but it's getting better. I took Norco the day of surgery for the lumpectomy and SLND, but the next day took one Tylenol, then nothing.
So glad we're here together to support each other.
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Hope things turn around Nancy really soon. You seem so strong. I am sure it will pass. I know what you mean about the down times.
The conversation about hair makes me think more about it. I have no idea whether i'llwant a wig, hats, scarves, nothing. And I guess I am ignoring it or putting off decisions about it. I have shorter hair so I guess I felt like it shouldn't be a big deal. No money on hairdressers and products. I think I intuitively know that there is an inherent vulnerability in losing your hair. Fear of judgement, self consciousness, feeling unattractive- these are perhaps the scariest thing. And like all of the SEs, you don't know how it will be for you.
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Jonsey22, I freaked about the hair loss, wore my wig until chemo ended, then switched to skull caps/do rags. Everybody around me, work, everywhere, was 100% supportive. The wig was itchy and I whipped that thing off as soon as I got in my car to drive home, along with my bra lol And it grows back quick after. It may take a long time to get back to a reasonable length, but for most people it does come back.
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For me it's the perceived loss of attractiveness. I need to process it and get that OUT of my head.
This past weekend, my girls and I bought 2 soft, simple beanie type hats together. They are 12 and 13 and were a bit sad to hear about the hair but they were excited to hear me talking about so many things that I could do to cover my head. Actually my 13yo asked, "do you lose the hair DOWN THERE?" and when I said yes she was very funny -- she said that doesn't sound like such a bad thing, mom. I laughed and laughed, the poor thing is not a fan of the nether region hair.
My friends have started a pinterest for me with cute hats and scarf-tying approaches - very sweet and I was super thrilled. Right now I think scarves for the office, hats/caps for casual. Who knows. I'm researching eyebrow pencil and watching youtube videos! If you want a link to the board let me know.
Questions:
1. Proactive about neuropathy- what are the possibilities for being proactive? Ice? When/how long/etc?
2. Proactive about preventing infection/catching something, particularly when coming into contact with general public / other people. Mask for public transportation? Gloves for public restroom? Avoid certain "no-brainers" when doing errands or at the office that wouldn't occur to people w/typical immune response? What about the gym for a class?
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Throughout chemo, I rode public transportation, went to baseball games (Washington Nationals, of course ), shopped, used public restrooms, went to the gym, and did pretty much anything else I wanted. I did avoid being around anyone who was sick, and used hand sanitizer a lot when I'd been out in public because you can't help but touch door handles, escalator handrails, etc. When I was at the gym I wiped down the equipment before I used it, and was sure to wash my hands thoroughly when I was done. The only time I avoided being out in public and around other people was when my WBC dropped a few times the week after chemo. Your MO will be doing blood work throughout chemo, and if your WBC drops your MO will give you guidance about what you can do and what you should avoid.
I'm sorry about the down times for everyone, but perfectly understandable. For me, exercise was a way to deal with the stress, and it also helps strengthen your immune system. Even getting out for a walk around the block can help.
Jonsey - you probably won't know what you'll want to do about the baldness until it happens. Some people are extremely uncomfortable and wear a wig except when sleeping. Others may have to wear a wig to work for professional reasons, but may use scarfs or ballcaps during non-work hours. No matter what they do when outside the house most people seem to end up going commando at home. And like you said, think of how much you'll save on hair salon appointments, shampoos, conditioners, etc. As a matter of fact, the first morning after I'd buzzed off my hair, I was ready for work 20 minutes early. I couldn't figure out why I was so ahead of my normal time, till I realized that I hadn't had to take the time to shampoo, condition, and blow dry my hair!
BK - LOL on losing the hair "down there". Think of it this way - no shaving of legs or pits for months. And those little annoying chin and lip hairs? Gone! And the body hair does seem to grow back more finely. I used to have to shave my legs a few times a week, but ever since chemo I can get away with not shaving for a week or two, and I have to shave my pits maybe once a month. And the chin and lip hairs are much more sparse than they were.
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Woohoo!! No more chin hair, at least for a while!! I'll take that as a positive.
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Awesome upsides for the hair loss - more time, fewer dollars spent, no unwanted hair for awhile at least (and I love that it may be finer and lessened afterwards too). Makes it seem better.
My Blue Cross covers a wig once per lifetime up to $1000. I don't know how much a wig costs even, but don't see why I wouldn't get one. I think I will likely find it itchy, though. It would be nice to have, though for formal events. Showing up to a graduation or something in a baseball cap is a bit strange.
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The consensus at work was that I was hotter without hair than with it. Spring, 2015.
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Oh, and I was going to say that I agree about the exercise. I actually tried lessening the intensity of my exercise and increasing the length. I used to do bootcamp type stuff for about 25 min. Since surgery, I have changed my thinking. I am not trying to be be buff or lose weight, just trying to FEEL WELL and more importantly, SANE. I now walk for 45 minutes a day on my treadmill, drinking a 32 oz bottle of water and watching my favourite Netflix series. It is "ME TIME" and it makes me feel well. I don't feel exhausted after, just energized. I hope that it will be more conducive to giving me strength rather than exhausting me.
Another thing I decided to do was to find a "green smoothie" recipe to replace the old smoothies I used to have. I used to drink Shakeology, but it is fortified with all kinds of stuff. My MO said she would rather I not take supplements during the chemo so I set my mind to finding a smoothie recipe made from natural foods, but that had lots of protein (for healing) and fibre (for potential constipation during chemo). I will share it with you. I like it and it has 17.6 g fibre, 28.8 g of protein, and 83% of my daily calcium. Total of 488 calories of goodness. Try it out if you are into that sort of thing.
1 c unsweetened almond milk
1/2 c 0% Greek yogurt
1/2 banana
1 c frozen berries (I use blueberries or mixed berries)
1 squirt of lemon juice (helps with bitterness of greens)
6 ice cubes
1 T hemp hearts
1 T chia seeds
1 T flax seed
2 c Spinach (I also use Kale or mix of both - fill rest of blender or about 2 c)
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