August 2013 Chemo Sisters
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Great Morning! Let's rejoice + BE (state of being) glad in this, the day of the Lord!
Before reading the healing scriptures I gave yesterday, you may want to read the Scriptural Foundation for Healing @ http://www.savedhealed.com/handbook.htm.
Delcaration: I AM grateful for today + thank God for Divine opportunities of health, love, peace + joy!
What are you declaring over your life today?
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Yes, FMGD - This is the day that the Lord has made - I will rejoice and be glad in it!
God does not waste suffering. He will deliver in His time, in His way and for His name's sake.
Is anybody having trouble with a port? Mine was put in last Thursday and I didn't really notice it for a couple of days but for the past two days, I feel it there - kind of pulling a little - and definitely noticed it in bed because I just couldn't get comfortable on either side. I'm hoping it's just the steri-strips pulling a little bit as it heals - I don't want to feel this for 6 months....
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Julie - I LOVE LOVE LOVE your attitude regarding your hair (or lack of). You're an inspiration.
For me, the idea of losing my hair has been pretty much the worst part (even worse than losing my breasts...weird, I know), so I'm holding on to the hope that the cold caps will work for me. BUT I am prepared with a wig (yuck) and cute hats on the way and hope I can have as good a reaction as you do!Saltyjack - I hate my port!! I'm not exactly small (5'6, 140) but there isn't a lot of "meat" in my chest/shoulder area, so the thing just sticks out like an alien! The chemo nurses keep telling me that it's a GOOD thing that it is shallow because I won't have problems with it, etc, and my surgeon told me if I was fat I wouldn't feel it so much. LOL My port area was very sore for over a week, and even now I'm still bruised underneath (had it put in over 2 weeks ago). I have been able to start sleeping on either side, though, so there is hope!
Speaking of bruising.... on 7/30 I had two areas in my breast biopsied, and the whole bottom half of my breast is STILL purple and yellow! Seriously - over a month later! What did that doctor do to me? Makes you wonder how much of that "lump" is actually my cancer and how much is internal bruising, if the outside looks like this!
Anyone dealing with low blood pressure? Mine has always been on the low side of normal, but last year I was diagnosed with Epstein Barr Virus and Lyme Disease, both of which seriously compromise my immune system. One of my first symptoms was low BP (and MAJOR fatigue). Once I went to the dentist & my BP was 80/48. I felt like I couldn't carry a mouse. Anyway, that feeling is back. Started last night and today... my arms are weak and tingling, my BP is 94/60. As if I'm not tired enough just from the chemo? I know dehydration makes it worse, but water tastes so nasty to me right now. Maybe I'll try sucking on ice just to get some fluids?
I have an appt with my med onc Wednesday so I'll talk to him about it. And finally get the results of last week's PET scan. Praying for an all clear except for my breast!
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Hi Ladies and welcome to the recent newcomers, I had my second round of A/C and cytoxin last Thursday. I did take Claritin this Time and I woul have to say it "helped" with the bone pain but I still have had to take pain med's on occasion for severe hip pain. On the hair loss time line I noticed at about day 12 after 1st Tx I could pull some out but by day 16, 2 day's after 2nd Tx it was coming out by the handfuls. My hair follicles hurt so I knew it was time to shave it, liberating it is😛My WBC dropped after 1st Tx so I will do labs Thursday to check again, fruit and Popsicles are the only thing that tastes good but I am careful to eat only those that I can peel and wash, feeling very fatigued and depression has really started to set in😥 I am such an outdoor person and feeling so crappy I feel like the rest of the world is just going on and people are enjoying their lives and I am really mad at Cancer for taking so many things away from me over the last 3 months. I am usually very upbeat but this has really done me in.
Shary -
Sharon, thanks, I love u! The contacts thing, yes I had issues in the past. Best thing to do, wear glasses. Sorry babe, contacts and chemo just don't mix. Your eyes get so dried out and bloodshot, you'll look like somewhat punched you in the eye, don't want strange rumors to start about you being beaten up at home. Ditch the contacts, get some cute glasses, I personally like wearing glasses, get cute color frames, so the focus is on the eyewear and not the baldiness, later too. You can rock a cool pair of glasses, since you are a pretty hot mama!
Lighthouse, I was there too, when I first had breast cancer in 2011 and my onc told me to shave my head, I was like WTF! It's gonna fall out anyways, why do I need to shave off my beautiful, long, permed/colored hair (cost me $150 to get it that way). After I did shave it, I understood. Stubbles are much more manageable than long, lucious hair as I found out yesterday! I was washing my hair and felt some hair, then some more, then some more, WTF, I had so much hair fall out I could've made a ball of yarn with them. It was not pretty, so I asked my in house beautician (my sister-in-law, who has cut all 4 of her kids hair since they were babies and sometimes even my big bro) to just cut and shave my head. It was so refreshing and my girls actually wanted to watch this time, so I let them join the festivities in the bathroom. it was a little crowded, but fun! They kept asking if it hurt, and I said not a bit, it felt refreshing, it really did. My sister-in-law works magic with the clipper and shaver. Hair is the image maker for women, so i totally understand your fear of losing it and I was the same way, and I'm sure most or all the women here feel the same way too. It's ok to cry afer losing your hair. Just remember though, it does grow back, as you can see in my profile pic. I had at least 3-4 haircuts before this current length and style.
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Shanna -
I stopped the Compazine and the cramping eased, but it never went away and yesterday the cramping started up again, this morning with a vengeance. I sent two emails to my MO and also took a muscle relaxant I have that seems to at least lessen the clutch a bit. I'm still waiting to hear back from the doctor's office. It's two days since you wrote me, how is it today?
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Oh Shary - we all have times like that. You have every right to be resentful or down in the dumps. I say give in to it & wallow for a bit, then pull yourself out. We can't all put on a happy cancer face all the time! It does stink, but it is what it is, you know? You will have days where you are better, and days when you hate the world. Just talk to someone if you start having more bad days than good! Mental health is a big part of healing!!!
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Shary I totally agree with what you are going through. Since the diagnoss of cancer I feel the world is moving on and I am at a stand still. I get mad at cancer and what it has done not only to me but how it had effected my family. I have accepted that I have cancer, but it is a very lonely disease. I feel I will need to have counseling after all this is over as a survivor. I just don't see myself snapping back into life. I am sure I will be a stronger person having been through this and have a different perspective on life, but I wonder how many will get back into the same negative thoughts before they were diagnosed with cancer.
Sharon what part of Ky are you from? I was raised in Ky and that was just a wonderful place to grow up and develop who I have become today. The simple things in life is what pleasures me the most and I feel that has to do with my upbringing.
The side effects are still awful for me. Today I gave been hugging the toilet all day and this is day 5. The diahrea is a vicious cycle for me. That's why I have to go in for fluids because nothing sticks with me until the third week. Just in time for the next round.
Hope everyone is giving themselves a hug for what they are going through!! -
Shary, I know I sympathize with you on that one. Sometimes you just want to stop and tell someone how fortunate they are and to be thankful for what they have. But then, we don't know what they might be going through either. We are all here for each other during these moments. How can we not have up and down days.
SaltyJack: You mentioned you couldn't get comfortable with your port. I know I had trouble when lying on the opposite side, felt the pulling as if it were "hanging" more, but it wasn't too bad on the actual side itself. Guess that really doesn't answer your question though.. Hope you will heal quickly.
Lovewins: It's so hard to wrap our minds around what we did wrong. I've always been a sugar addict. Was that it? Of course I'm wondering. I've been trying to eat better for the last couple of years getting tips from my vegan daughter. Then we hear that soy is no longer the best for us. So frustrating.
Togetherness and Shannah75: I am somewhat relieved to hear I'm not the only one with back spasms. I was wondering if I had done something else. I went to the ER after being up all night in misery.
Has anyone had any skin issues on their hands. Mainly along my index fingers. Skin is irritated, almost like poison oak. Very itchy. Been trying different lotions. Someone mentioned the Aveno with oatmeal, so I thought I'd try that.
Naan, prayers and good thoughts coming your way.
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Sharonanne, I wear contacts but have not had any issues yet. And thanks for the reminder to check the chilled soup, I had it in the fridge overnight and I think I got most of it out. Based on my first post-infusion weekend I may not want to eat anything but if I do I think I am all set. Thanks for the suggestion to check out Jennifer Goodwin's page, I didn't realize she was 'in the club'. What an inspiration, but then, all of you are inspiring.
Saltyjack, welcome and I love love love your attitude. I think staying positive is a huge part of kicking this in the rear.
Today was the first day I wore the wig out, and no one batted an eye. I even stopped at my vet's office to pick up some medication for my dog and they didn't notice either (they do not know I am going through chemo). I even changed my avatar to a 'selfie' shot of me modeling my new alter ego.
FYI, I am having good results from a new moisturizer I started using, it is made strictly from organic botanical oils and is helping me with the steriod-related acne. Here is the link in case anyone is interested. At $30 it is a little pricey but I think it will last a long time - 6 drops at a time is all it takes to do my face and neck.
http://www.serraorganicoils.com/
I am feeling good today and plan to hit the river for some fly fishing tomorrow. My sister came up from florida to take me for my infusion on thursday and suggested we get outside for something fun tomorrow. Enjoying a few days of vacation and then it is back to work next week, hopefully the SE's won't be too bad.
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Togetherness, I live in Northern Kentucky about 36 miles SW of Cincinnati, Ohio in a small town called Warsaw. It is halfway between Cincinnati and Louisville. I grew up on the Ohio River. My dad is 91 and was a riverboat captain all of his life. We're river rats. We skiied, boated, camped, and just had fun growing up, thanks to my mother. Where do you live in Florida? We go to Venice every winter for four months. Missing it this year. Chemo is calling my name.
sgyukon, If that is your wig, it is super cute. It doesn't look like a wig. I love it.Where in Florida does your sister live? We go to Venice every winter, but this winter, I'm doing chemo and radiation instead. Bummer.
Naan, I asked my RN today about wearing contacts. He said I should be able to but that others have reported dry eyes and can't wear them. I do have reading glasses, but when I go shopping, it's so much easier with contacts because I can see things on the shelves w/o sticking my nose on top of each item. I guess this is just another SE. I actually forgot to look for glasses today and we were all over Florence where we shop. My brain isn't working so well.
Shalimar, Try cortisone cream for your itchy skin. The aveno is a 24 hour lotion that is healing but doesn't stop itch very well. If just keeps my hands from peeling. If I don't use it for a couple of weeks, the palms of both hands peel, and that isn't from chemo. It's just psoriasis, a light case of it.
I went to the AMerican Cancer Society in Northern Kentucky today and got a free wig stand, two hats, and a pattern to make more. I think if I make them, I'll make them a bit bigger. Those hats that tie at the back of your neck look like Little House on the Prairie, but I'm sure I'll be wearing them around the house. I am going to order that gel band that is supposed to keep your wig in place. I got the idea to pull some of my real hair (which is a shade lighter than my wig) through the holes in the mesh and sew them there as a highlight. I'll let you know if it works, because I haven't cut my hair yet. It's only day 9 for me. Keep pulling on my hair to test it.
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Sharon I grew up in NorthEastern Ky In a small town called Flatwoods. It is considered the tri state area. I don't make it back to Ky as my parents are deceased. I do have alot of cousins stil in the area and love when I do come back to visit.
I currently live in Fort Myers which is not far from Venice. I have lived in Florida for thirty years. I am 49 and will celebrate my 50 th birthday on Christmas Day. I am so looking forward to that birthday. I know genetics plays a big role with cancer but I wonder if environment does as well like gardens, soil all the chemical plants where we lived like Armco Steel, Ashland Oil, C&S, etc. My mom was one of thirteen and eleven of her siblings died of some form of cancer as well as her. My brother who is 57 has had primary liver cancer twice and is a survivor which is really unheard of. He had the will to live when Dr.'s told him to get his affairs in order. Absolutely amazing person he is. Now here I am with breast cancer. At times it just does not seems right. I will be victourious through this so I can enjoy my daughter and see her through her senior year and off to college. I feel I am missing out on so much and a friend just put it into perspective. You are just experiencing your daughters senior year in a different way. Her dad and her have tours scheduled to look at colleges, I hope to be able to go to at least one college tour.
Shalimar - I use ice backs on my back spasms and that seems to help. I am having more trunk spasms this time, but that could be from the masectomy. -
Thank you ladies, I suppose a big part of how I am feeling are just the SE'S. Extreame fatigue, I can hardly keep my eyes open for more than a couple of hours, I feel hungry all the time but I cannot eat more than a couple bites of anything. Talking about back spasms I have often then with both Tx's so far, especially my rt hip.
Togetherness, I am so sorry you are having so much trouble with getting sick😰Did they give you any anti nausea?
I am glad someone brought up eye's mine have been beet red and running constantly and I figured it must be another SE.
Shary -
Togetherness, Our area is called the tri-state, as well. My Florida friends and I drive to Sanibel Island frequently to look for shells. Basically, we look for Shark's teeth in South Venice Beach. I have found tons of them over the years. Just enjoy the hunt.
Shary, My eyes look bloodshot. I am just not going to try my contacts during these chemo treatments. I have enough to deal with. I have felt very good today, day 9, knock on wood. My head has itched a lot and I jushust washed my hair this morning. Uh Oh. Here come da' judge.
I'm going to brush my teeth and use my magic mouthwash. THe pharmacist said to swish it around for 2 minutes then swallow it. Hope it isn't nasty tasting. We'll see. God bless this thread and all who drop by tonight.
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I've been up at 1am feeling like I was starving to death, like I have a bottomless stomach. I finally figured out the problem, it was the steroids I've been taking. It makes me so hungry, I couldn't sleep. My radiation onc initially had me take 3/day, then 2/day, now he oked 1/day and by the weekend none. Can't wait. Hate getting swollen all over and always hungry! Had my 10th brain radiation today, finally at the halfway point. 10 more to go. Next chemo is this Thurs.
Tomorrow my 10yr old is getting braces put on, she's so nervous and asked me to stand next to her, I said I'll sit next to her and hold her hand. She's 5'5" tall and wears women's 10 and 1/2 wide shoes, but still a big kid. -
Nothing gets me moving like deadlines + helping customers. Today I woke up feeling great. I got to thinking about my work goals + customers I had to help. This took the focus off myself and redirected it onto something/someone else.
Today I made my ACC Look Good Feel Better appointment. I'm excited about learning how to draw eyebrows + get make-up. I also spoke about donating some of my TCL Healing Bars to give to those taking the class so they can get to try my natural, made-by-hand super conditioning soap. Maybe I'll create samples of my Herbal Scalp + Hair Butter for eyebrows + lashes. I'll reformulate it and call it something else . . . first I want to see if the butter helps me to keep my own brows + lashes. Has anyone tried Brian Joseph's products for brows + lashes. I didn't see any ingredients listed . . . which is strange.
I saw my plastic surgeon today. We decided that since my foobs are not filling (due to a leak) there is no reason to continue filling them since they won't expand. I scheduled an appointment for mid-November to have it replaced. The third time has to be the charm, right?
I am vendoring at a Lupus event in a few weeks . . . this will take my mind off chemo for a few days. I created a bar specifically for the event called, "Purple Midnight" . . . it smells amazing! The proceeds of this bar + a few others will be donated to the local Lupus chapter.
My heart goes out to you who are feeling a little down. Let's look for the silver lining and focus on it; remembering what we focus on grows. I encourage you to tap into that moment when you last felt fine, the last joke you heard that made you laugh really hard or your grandchild's face that made your smile. Be encouraged! Keep in mind that sometimes you have to encourage yourself!
My contacts are fine + I wear them daily.Today I'm eating everything in sight . . . must be a delayed reaction to the steroids. I'm also exhaused but don't dare try to sleep before 10p . . . or I'll be awake in the middle of the night.
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I'm using the Brian Josephs brow & lash conditioning gel.... we'll see if it helps me keep them.
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Lighthouse, the brow and lash gel sounds promising, did you get it online?
Sharonanne, my sister is in valkaria FL, just a little south of Melbourne. Sorry you won't make it down this year. Save you $$ and plan a nice post chemo trip! I won't be done with treatment until July of next year and I am already thinking about a nice 2 wk trip.
I have a cousin who is a 15 yr survivor, she lives in Ashland ky. Beautiful state! (And yes that is one of my wigs, got it from paula young)
Naan, good luck at the orthodontist. Its sweet that your daughter wants you there.
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sgyukon - My mom's friend used to own a shop for BC patients (prosthetics, wigs, products, etc) and when I was diagnosed, she gave the lash & brow gel to my mom to send to me. I have looked it up online, though, because I will definitely need more!
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I guess it's become the time for a lot of us to share in what I was told would be the big symptom of chemo: fatigue. Boy, am I feeling it today plus some aches from Neulasta the gift that keeps on giving.
I went to see another movie today (and its okay Julie, there were only 2 other people in the theater; it was at noon). Blue Jasmine -- Woody Allen movie but pretty much a downer, so I wouldn't necessarily recommend for any of us now. But I loved it anyway. But wow was I tired after!
Doesn't seem to take much. I have weird energy bursts then get tired out.
Shalimar and Togetherness, I understand the need to ask why such a thing like cancer happened to all of us. Honestly there is no way to know. I don't have a single risk factor, never smoked, barely drink, mostly ate healthy and exercised. I'm thin and have no family history.
I've known a close friend's son who died of leukemia at 21 within six months of diagnosis; no risk factors, no reason. I know several smokers who don't have cancer and are pretty healthy. There's no sense to cancer, it just happens and 1 out of 8 women in the US will be diagnosed with breast cancer in their lifetime.
To be honest I'm just glad (now anyway) it was caught and that I live in a time when there are so many options for treatment, plus they have so many drugs for the crazy side effects.
Don't get me wrong, I hate stupid cancer and these side effects and being scared of the next thing coming down the pike (for me, radiation and reconstructive surgery) but I am hoping to be like my friend Jim.
Last year he was diagnosed with tongue cancer. He had to go through painful surgery and skin grafting and laser treatments but now a year later, he has clear scans and is cancer free! I want to be there with him and hopefully, by the grace of God, I will be. And all of you will be too. -
Shary - they have tried so many naseau meds on me. I get Aloxi while I am doing the chemo and have a script for ondansetron. I just get the dry heaves so bad that I makes me not want to eat. My MO has really been trying to work with me, but I think I have even dumb founded him. Usually my third week it passes and I make up for lost fluids and eating. It just makes me so fatigued and hard to play catchup because the next treatment is around the corner. I go in for fluids and that helps. That what they say no two people are alike.
Sharon - Sanibel and Captiva are such beautiful places and so peaceful. They are only 20 minutes from me. I need to go once I feel better. I love the beach. Maybe I will just have my husband take me for a drive with the barf bag close by..... Lol
Formygranddaughter - you will enjoy the look good feel better class. They gave me a lot of good tips for applying makeup and made it fun. My eyebrows and eyelashes have stayed in. Someone said that there's didn't fall out until at the end of treatment. If I can keep them that would be great!
Everyone sleep well. That is one thing I do well is sleep. Either I am so malnutritioned or the drugs help!!! I am thankful for that. -
Question...chemo tomorrow...do I take a claritin tonight? Will the nurse put my popcycles in thr freezer? I brought grapes, banana saltine crackers and smoked turkey...she made it clear they do not supply snacks and I will be there 5-6 hours. Any good mindless games for my nook? Hope they have good cable!!! Ok ready to take my calm down pill! picked up nausea pill when do those start? Thanks ladies.
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Less than 2 weeks ago I lost a dear friend, Jo, to metastatic lung cancer. She didn't smoke, tried to live healthy and do everything right. Then she got a genetic type of lung cancer that had already spread to her brain, liver, kidneys, and bone.
Lisa, like you said Cancer Needs No Reason!
Paula -
Togetherness, that is so frustrating I am so sorry you have to deal with that on top,of everything else😨These SE'S are the pits!!!!!!!!! I hope every one has a restful night.
Shary -
Togetherness - wow you have it rough! My friend was like that last year... she had many more bad days than good, was always sick and needing fluids, etc.
lovewins - are you getting the Neulasta shot? If so, you'll take Claritin the day of that & the next few days after, not your chemo day. (At least I didn't, and I had no problems). I don't know about the freezer... my chemo place said they don't have a freezer, so we brought a cooler. They did provide snacks and offered me drinks the whole time, though!
Paula - I'm so sorry about your friend. So sad.
I'm so tired, I hope I can sleep tonight. Last night was the first night since Thursday that I didn't take any meds, and I guess my body was used to being drowsy from the anti-nausea stuff... I was awake all night. Not sick, not upset, just awake! I tried to doze off after I took the kids to school today but still couldn't sleep. Maybe by bedtime I'll be so tired I will be able to drift off tonight! I've never had so much insomnia in my life as I've had since d-day (diagnosis day).
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Lighthouse, sweet dreams, I hope you get a great nights sleep😴
Shary -
Hello ladies ,
Today I had my 2 nd treatment. I felt okay, not waves of nausea this time. I got done around 230 pm. Came home i did take antinasuea meds. nurse told me to take them for the first 3 days , did a few things and took a nap. I am feeling tired but not exhausted and I'm starting to get a head ache...:- I hope you all feel better. Remember god is in control. Prayers to for you all. God bless. Sue -
Hello everyone, it's been awhile since I've posted anything. I just got caught up with 4 days of posts. Welcome to all the new comers. Well I was able to go on vacation felt great. However my hair started shedding day 14 post my first infusion. I brought Faith (my wig) on vacation, thankfully I didn't have to use it. Hair coming out more and more each day. Not sure why but my body aches (legs, back of my thighs and upper arms). Second infusion 9/6, little anxious and nervous.
Praying for everyone...hugs and kisses to all. -
Hi all.
Lighthouse... I feel your pain about sleeping. Thankfully my sleep has come back somewhat but I can only sleep 4-5 hours at a time. I have always been an 8-9 hour sleeper. Since chemo I think I am waking about 3am and can't fall back to sleep for a few hours, but eventually I do. Praying that you get a good night sleep soon.
Shary...I echo what others have said. We can't be happy and upbeat for others all the time. I am sorry that you aren't able to get outside. Last week where I live we had heat indexes in the 100's...strange for Minnesota and I couldn't go outside either. I was housebound because my WBC was very low despite the shot. I went in to clinic today and all my blood work came back normal...yay I got to go out. Went to my sons chapel for first day of school, went to visit a friend, went to watch my other sons soccer game and went to Bible Study. It was so nice to get out and about again! I do think I may sleep extra well tonight.
Naan...I am glad you are able to be there with your daughter. I am sure it will be nice to go to an appointment where you are the helper and not the patient. Did anyone tell you to have her take pain meds like advil before she goes to the appointment. I hear that first visit can be painful.
Yesterday I got my head shaved. I saw that a few others did too. So what did you venture out in today? Did most of you do wigs. This will take some getting use to. I haven't quite figured out how to tie the scarves. In the past I haven't been much for wearing earring but decided to do that. My kids were laughing with me wanting me to tell them their fortune...they all felt I looked like a Gypsy.
Also has anyone had the side effect of nails falling off. I have one nail that split towards the middle kind of snagged. I am not sure if it's realated to chemo or just a freak accident.
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Thanks Paula for listening. I hope I wasn't getting preachy, just hate to think anyone blames themselves for this stupid disease or thinks somehow they caused it. My mom died last year almost to the day of my diagnosis and I have had to wrap my head around how to handle so much in what feels like a short time.
Thanks for sharing your photos, beeve and sgyukon. You are lovely beeve and sgyukon, your wig is excellent! I have discovered a new cheap place for wigs, in many varied colors and styles, EBay! They come directly from China where they're made and wow is there an amazing variety!
Mankatostate, you sound exactly like me, unable to sleep more than 5 hours and used to 8-9 hours. Ugh, I hate it. Up at 4 and unable to go back to sleep. The sleep issue persists with Ambien too, which means the steroids are really strong especially since I stopped taking them last week.
Since I seem a bit ahead of a lot of you, I just wanted to say its been two weeks since I shaved my head and I actually like it, weirdly.
I've spent most of my life with thick hair that would make the back of my neck hot. When it was hot last week, if I took off whatever cap I had on, instant cool. And showering is amazingly fast, no more tedious hair styling!
I went to Amazon and got a bunch of caps and something that is like a tube of knit material you can wear like a stocking cap. I got 6 for $12 and they are wonderful. There is also something there called a 3seam chemo cap that I use at night to sleep in sometimes.
I'll talk about head coverings and stuff some other time as it comes up. Good night all and I hope we all sleep well.
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