Starting chemo July 2014
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Mumford,
Read it, loved it!! Shirley
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Great to check in and see everyone continuing to hang in there. Mumford, your blog reminds me how fortunate we are to have one another to inspire, listen and encourage.
Myself, I feel better each day. Mornings are best. I get pretty worn out by afternoon. I continue to feel lightheaded and clammy with physical exertion. Loading the dishwasher or even showering can be exhausting. Yeast infection full blown after all the antibiotics they gave me in the hospital. Started even more meds to treat that today.
My MO office called and asked my to arrive next Thursday, but I will not receive chemo. Doc will discuss with me what my options are at this point. It makes me anxious, but will wait to see what he has to say.
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read it, loved it too, my journal is just a list of my symptoms, when I ate and when I pooped
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Hey Mumford! What a great start! Love it, love it.
I used to journal, every day. I find I haven't much to say to myself now that I haven't already heard.
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hey Mags,
I've had horrible stomach cramps too and. I'm not sure if it's cause of the chemo or the little buggers I had!! My dr gave me Bentyl and it works great, maybe that's what you need. It's specifically for cramps, I used to take it when I had IBS years ago although I feel like this chemo is making me have it again!
Glad everyone seems to be doing well. I'm gonna use my last few days at the beach with my family having as much fun as possible until next week when I have #2.
Today is Day 14 and although I cut my hair into the crazy fohawk, I keep looking at the bottom of the shower waiting to see hair but none yet. I did have a little mini meltdown and cried yesterday when I was looking at my hair. I think other than the horrible SE's, being bald will be hard for me but I'm focusing on being alive and healthy. I can't wait to wear my crazy hot pink and blue spiked wigs. I'll post pics when I get home from vacay
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Mumford - I read the blog and loved it too!
All the ladies here are amazing! I may not post as much as some but I read each and every post. They make me smile and laugh and are so informative. I've been dreading chemo but after reading what everyone is going through, I now know I can do this too.
Mags - such beautiful artwork! Please continue to post more.
Slappy-squirrel - I'm looking forward to receiving my beanie, thank you
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Mags, beautiful story with your hubby my case was fest, one year from the day he met we were at the altar but you were much fast. Happy anniversary ! The poem is nice.
Mumford, the blog i wonderful you definitely have your way with the words.
I'm feeling a little down today maybe because my baby keep looking at me and looking almost like she doesn't understand..... I have the worst cold ever because my immune system i compromise and when my baby wake up during the night who goes to calm her down ? Of course me dh not even move from his side of the bed.
BTW I had a MRI and I have 3 herniated discs on my lower back one of them pinching my sciatic nerve so after chemo I have to go through surgery again ;(
Chaos hope you feel better!
XO
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Pinkninja, my MO prescribed hyoscyamine for the cramping, it's a sublingual tab, but I have to take it regularly or it's ineffectual. Is bentyl an injection? I'm going to see how tonight goes and call in the morning if it's not gone. I've had the max Imodium dosage for the day, so it's officially worse than round one. Last time I took two at first loose stool and one more but it cleared up after that. I will definitely talk to MO about stronger meds of next time though, since the effects are cumulative, I expect it will only get worse.
I keep forgetting to tell you about this, but I think you'll appreciate it. I have a friend in Scotland, we've never actually met, and when we've skyped we needed an interpreter, but we have a great relationship on chat via Facebook frequently. A couple days ago she tagged me in a pic. She cut off all her waist length auburn hair in my honor. I was floored. She is such an awesome person, to do that for someone she's never actually met.
This morning I was lying in bed and the doorbell rang. I ran to it, and it was a lady from church (also a bc survivor) with a vase of flowers for our anniversary. I was so embarrassed, and trying to open the door enough to take the flowers without Rose getting out (she is a runner, and an escape artist, and fast as a cheetah), I couldn't invite her in, and she left. She has been one who calls and prays with me on the phone, I know she understands the mess I am right now, but it was still embarrassing.
Cousin is off to choir rehearsal, DH is in his office, asleep in his chair. He worked from home this afternoon, he does that a lot. Everything he does can be done from any location. Meetings, programming, records, everything.
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Hi all- I've been a bit shy and have been lurking for awhile now..it's been good to see how you all have been dealing with SEs and how you've all been supporting each other.
Mags please add me to the list as well- for prayers and everything else too- I would much appreciate it. I started dd4AC-4T on July 8th and have completed 2 rounds of AC so far....halfway through the AC and I've been pretty lucky with SE. Mostly some stray nausea easily controlled by meds days 1-6 and fatigue on day 5-6. Worst side effect has been that when I get tired, it's immediate and I feel like I've slammed into a brick wall.
Not to complain but I'm a little worried that if I'm tolerating the SE well, does it mean that the chemo maybe isn't working? Sorry, I've just been so anxious and it feels like both just a blink of an eye and yet a million years since the diagnosis May 20 of Triple Negative which has me so frightened. I am 42 and I have an 18 month old son and a 3.75 year old daughter and I need to do everything I can to be with my babies til they have their babies!! On top of all the regular fears and anxieties with treatment I think I am also suffering from PTSD as I lost my best childhood friend in December to complications from advanced metastatic BC after only a 6 month battle. I miss her so much...but I am trying to not think about her situation too much and just concentrate on being strong and proactive so that I can make sure to survive this.
Sigh...anyways practically speaking, I cut my hair short just before my 2nd treatment and had to shave it this past weekend (day 20), but I only went down to 1 with the clippers and now teeny tiny poky hairs are falling out everywhere and it looks like a mouse has been nibbling at my head! And the hairs are prickly and kind of hurt. Have you ladies shaved all the way down to the skin or should I let it fall out or what?
Thanks for listening....and for any advice you might have.
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VerukaNY - I too am Triple Negative TN and it scares the beejesus out of me. I just turned 43 and had a really hard time moving from frightened/sad to fighter. You will make the transition, though! One day a nurse told me this was just going to be one short chapter in my long life and I'd get through this crap. That's all I've focused on since. Don't dwell on what you can't control. Work everyday to make your body healthier. Enjoy your children. I have two, 13 and 10, and while they drive me crazy... trying to take deep breaths and focus on the everyday love.
MommyMel - I loved your photo! You look great and brave! Mine hasn't started falling out yet but I hope I can just shave it down, too. Seems like the best idea.
Shirley - thanks for the hat! Gives me something to look forward to. You're in my thoughts as you head to surgery Monday.
Mumford - I love that you're so active and still looking for challenges! I love a good yoga. Wish you were closer! Your blog is next on my list. I do PR/Marketing writing so I love a good read.
Every day has brought me a little something new. Day 7 brings bad news on my WBC today. It's so low - 1.2, I have to get Neupogen shots. I'll get 3 this week. I feel like a truck ran over me! Of course I was out all day and havent had time for a nap. Next week we'll try the blood again...
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Mommy Mel, I have really bad excema too.. Had it in my hands and they would crack. Just horrid. Tried simply sugar after shark tank and it was awesome. It's the only soap I can use and I wear white cotton gloves all the time to prevent scratching and irritation.
Went through treatment today, tch. They all looked at me like I was crazy when I said herceptin for 90. The nurse said there is no difference in all her years of experience with the time..so will do the 30 and see. Just really really tired and feel some dry mouth but otherwise ok so far. Will see what it will be fri/ sat.
Jenn, I am hoping for same schedule as you.
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also, went to wig fitting beforehand. Made me feel a lot happier about hair situation. It was pretty and I got one that is just for under any hat and one for the head.
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Girls, thanks for the kind feedback...
Mags, I once worked with a man from Scotland. Nobody but me understood a damn thing he said (maybe that's why I ended up in his department). At the end of the year, I got the "Scottish As a Second Language" award. Still cracks me up...
You've got good friends out there because goodness returns...
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Hi Ladies - made it through round 2 of AC today, not sure if anyone else who started with me also has infusion every two weeks. Feel fine right now, but already started with the nausea meds since I felt sick at night the last time and didn't think I was supposed to take meds til the morning. I also am getting a prescription for magic mouthwash - the one SE that never went away for me is the burning tongue feeling and the rest of my mouth feeling like yuck. Hope it does the trick.
Veruka - I'm doing well with the SEs for the most part, continuing to work most days. Luckily the weekend is when I feel like I've been hit by a truck. I'm sure the chemo is working, it's just do different for everyone. Just consider yourself lucky!
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Slappy, great timing! I'm shedding like crazy today, gonna buzz it all off tonight
Raindew, you're in almost exactly the same situation that caused my thrush (except my infection was non-specific, I hope they can save your expanders and spare you a whole 'nother surgery!). I'd load up on probiotics now if you can to help avoid it. It's pretty unpleasant
So far the nystatin they gave me for the thrush seems to be helping- it's cleared up my mouth, although It's still quite painful. The doc said it could take a week to feel better.Mumford, I hear ya on the yoga. I was really active before all this came on, and now a gentle yoga class is all I can manage- but it feels amazing! I'm hoping I can back into the studio in the next couple of days. I've been too clobbered by various ailments and infections to go but twice since my first treatment on the 16th.
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Mumford, What a very nice blog. Thank you for it and the kind words.
One of the things I see here are the kind hearts of everyone. This may sound odd, but how lucky we are to have found each other. If we must go through this, it is so good to know we have such a wonderful group. It really is a place we can give and receive support. I do believe in guided destiny.
I'm also really impressed with everyone's professional and personal accomplishments! This is definitely a "can-do" group. "We Can" seems to be a theme throughout the posts.
I'm going to the kitchen to fix a nice dinner for us tonight. Tomorrow - maybe not.
Happy Anniversary Mags!
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Hi ladies. Well made through the first round and felt ok until I got a pounding headache that I've had all afternoon and evening. Had to take the nausea meds as I feel pretty queasy tonite. At least I was able to eat lunch. Now even the smell of food makes my gut wrench. Blah! Mainelady I hope your first round went well! Thinking of all of you wonderful women and feeling thankful we have such a nice support network. You are all in my prayers.
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Mags,
The Bentyl is a tablet and I took it for the few days of cramps I had and it was amazing.
I also had my hair cut into a fohawk and bought a few wigs before so I would be prepared, I plan on wearing skull caps/bandanas and baseball hats most of the time cause I've heard the wigs are hot. Although I haven't lost any hair yet (day 14) once it does start to fall out, I'll shave the rest of it.
I don't know about any of you, but my faith is what keeps me going every day. There are several verses that have been so encouraging for me thru all this. My fav of course is, I can do ALL things thru Christ who strengthens me and we are more than conquerors thru Him who loved us.
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VerukaNY, welcome to our corner of the forum. I have added you above. About the side effects, that is one thing I was specifically told: lack of side effects does not indicate ineffectiveness. It just means that your body reacts differently. And since chemo is cumulative, it's quite possible that they'll show up at some point. Look for the blessing in it! Our condolences on the loss of your friend, I know from experience that it's rough when you've gone through someone else's cancer and then you're facing it yourself.
Fallenmirage and Mommymel, I had eczema as a child and throughout my life I've dealt with it popping up. In my 20's I had it on my hands really badly. As an infant, my hands would be swaddled at night to keep me from ripping myself up. I couldn't be held & cuddled because it was so painful. I can't imagine dealing with that on top of everything else.
Maidentired and kpmacmill, special prayers for the next few days, you're going to be ok.
Pinkninja, here is my cancer verse. I Thessalonians 5:18 reads, Give thanks in all circumstances for this is God's will for you in Christ Jesus. Many years ago, my brother-in-law was dxed with cancer, and I remember getting the phone call telling us. That verse immediately came to mind. After my dx in April, I was reminded of it again. I confess that some circumstances (((chemo))) make thanksgiving very challenging.
Nini ladies.
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hello ladies, haven't been here for a day and I've missed so much.
A lot of you are taking probiotics...and I was told NOT to have any. we're u told it was ok?
My hair started to fall out today..day 15. Right now, as I lay on bed, my roots are killing me. Tomorrow will be great fun. I think I can handle the hair, but I am worried about the eyebrows. I actually bought fake eyebrows, and hopefully that works cuz I think the no eyebrows really makes u look sick. Pencilling in won't work for me I think cuz I have big eyebrows.
Last night took sleep aid and didn't sleep a wink.......hopefully goes better tonite.
Good note ladies,
DD
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I have been away for awhile and was glad I was able to finally check in today and find continued encouragement, support and especially inspiration... Love the personal touches and all the great advice, insight and yet each of you still remember that the response to chemo is an individual thing but sharing and asking questions is important.
Before starting chemo I had to get away from it all and we took a short getaway with the family before starting chemo next week (8/6). We took a trip to Disneyland with my grandkids and had so much fun. The best part I was spoiled rotten and soaked it up :-). The getaway allowed me to focus on something other than chemo and just relax. I have soaked up all the information each of you have shared to prepare for and deal with the SEs. I came back to a lot of information, stories and updates and truly inspired by how you've all been such an awesome support to each other.
This week is filled with all my chemo prep: heart test, chemo class, drain removal, and can't forget my last dental appointment. Glad my husband decided to take us away :-).
I have to say I am double dipping :-). I joined this group a while back and will continue. I also noticed there were quite a few lady that were starting chemo in August so I started a thread for them. I also suggested they come and read this thread because of the wealth of information provied. I did brag about this group and the awesome encouragment and support.
Mumford -- loved the blog.
Choas - I really hope you feel better and following you closely as we are on the same treatment plan I believe
Slappysquirrel -- can't wait for the hat :-). I thank you for your support in providing a hat!
Mags -- I followed your footsteps and started a August 2014 group. I read an earlier thread from you that gave me the encourage and guts to do it. I know staying on top of adding individuals and keeping us updated is not easy. I thank you! Happy, Happy Anniversary and love the artwork. I will remain a part of this group to help me prepare and also pointed the August 2014 group to this thread.
Joeysmom, Mommymel and others: Love your pictures and you are beautiful women. Hope I look as stunning when I reach the point of shaving my head. I will probably take the approach that once it starts it all goes :-).
Those who I have not mentioned I have read through these threads and such a wealth of information to help me to prepare and go into my chemo class prepared with questions to helpfully minimize or stay ahead of all SEs. I keep each one of you in my prayers.
Ok the novel is over. I will end by stating the 3 primary things I have picked up for each of you is support/inspiration for each other is key, no judgement, and we are all different....but knowledge is power ( had to use that -- big smile).
Good Luck with treatments this week and hoping the SEs are minimal or the treatment for SEs is effective.
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JoeysMommy; Kpmacmill; Mainlady; Maidentired...; Fallenmirage - To the best of my figuring you were the ones who sat in the infusion chair today. I hope your day went well and the se's will be kind.
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Made it through the first infusion and many thanks for all the encouragement. I had to start my nausea meds in the evening but if finally settled down and was able to sleep.
Maidentiredofwaiting - Glad your 1st round went ok. Prayers going up for you!
Coyote - Thanks for the good thoughts and support!
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Morning ladies.
dancingdiva: I'm waiting for an answer from my onc about taking probiotics after I'm off my antibiotics, chemo caused my divertic to flare up and I've been told probiotics decrease the inflammation in the gut and I'm hoping they could prevent problems with my future chemo sessions
ladyb: record your chemo class, they'll be throwing a lot of info at you and it's nice to be able to relisten later at home, I used the voice recorder app on my iPod
I haven't shared any of my background info so here goes.
I'm 62, birthday in Oct, have lived my whole life in North Dakota. I retired Apr 2013 after working 40 years as an RN - taught nursing students at the university for many years, then worked in ICU and the recovery room for many years, and ended my career in the discharge area of outpatient surgery, really enjoyed teaching in the various settings.
Lew and I have been together 38 years, not married. He had 4 children from his first marriage so I get to be grandma to 11 and gt grandma to 1 with 1 "in the oven". Don't get to see them as often as I'd like; I'm so grateful for Facebook, that's our main way of staying in touch.
Lew worked for the phone company for many years and took early retirement when they made him an offer he couldn't refuse. He volunteers at the engineering lab at NDSU, every day 9-5, and loves it. But since it's a volunteer position, if I'm having a bad day, he's right here home with me. He's been wonderful.
We are birders and love to travel to find new species and to make it affordable we tent camp. We even camped in Hawaii and Australia. I turned over the planning of the last couple trips to Roadscholar (formerly elderhostel). Very well run trips, we stayed in lovely bed and breakfasts, had knowledgeable leaders, and reasonably priced. Highly recommend their trips. Over the years I've built up a "lifelist" of 1045 different species of birds
I also enjoy researching my family's genealogy, which led to my becoming a volunteer for findagrave.com. I photograph tombstones and post them there. After I retired I finished taking over 18,000 photos at a local cemetery, still have about 3000 photos to add to the website, which has been something I can do from my recliner. Hopefully chemo brain won't get so bad I have to stop that.
And I enjoy working in the flower beds in my yard. I've continued since the chemo, wearing gloves and sunscreen and being careful.
Mom died a few years ago, had alzheimers, Dad will turn 88 next month, he lives 5 hours from me and I'm hoping I feel good enough that we can go see him, my only brother died 2 years ago of ALS/Lou Gerig. Now my sister in law is battling ovarian cancer.
So that's my story.
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Wallegator, thanks for the complement I don't know about look grate but I'm trying my best to be brave and you can too.
Fallenmirage I never saw the product that you told me where did you buy it? And thanks for the tip I have mine under control but I will try it if I have a flare up:)
Mags how did you get better of your eczema?
Ladyb1234 you are a wonderful lady thanks for the complement . I think you will be a very good leader you like to know about people and care about them so you will be able to help a lot the other group. If you need anything we are always here.
XO
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Good morning ladies!
All of you mentioning probiotics yesterday made me remember a liquid probiotic I had bought before this all started and put in the refrigerator! It tastes kind of like what I'd imagine rotten milk would taste like, but after taking it twice yesterday I am already noticing relief of the mouth sores.
Mags, Happy Anniversary! So sorry to hear your cramps have not gotten better...
Mumford, loved the blog... I started a blog awhile back as well but haven't had the energy to post to it lately, I dont even remember the url for it at the moment lol
Dancingdiva, my hair started falling out heavily after day 14 as well... I found it really uncomfortable as well, I kept describing it as feeling like cactus thorns in my head! It was so bad that I did not get sleep so the morning of day 15 I got up and razor shaved my head... I know it's just hair but funny how we get tied up in body image.
Mommymel, I hope you start feeling better soon! My grandson will turn one year old Saturday, he has stayed pretty much confused because grandmas apperance keeps changing and she doesnt pick him up anymore thanks to the port... it's hard, I've always loved children, have friends with little ones who are use to coming to visit and having Aunt Shanny spoil them rotten and play etc. And it's all changed...
Ladyb, I am feeling more normal today.
and I am sure you will do fine with your treatment! A friend and I were talking last night and she pointed out to me that even though I feel like I am so tired I never get anything accomplished anymore, I have actually been doing quite a bit... I do laundry, keep the house clean, and even still cook most days... before treatment I did all of this, worked out for an hour and a half every day and was constantly on the go... so I think the change of pace throws me off... before this I probably hadn't taken a nap since grade school! I think putting things into perspective helps a lot but sometimes is the hardest thing to do!Shirley, thanks so much for the hat, I can't wait to get it! We are so blessed that you are spoiling us!
Well now that I've written a book...
I hope everyone has a wonderful day with as few SE's as possible. We all can and will get through this, and we will be much stronger after weathering this storm... this too shall pass!
^ my favorite inspiration, thought I'd share it as well.
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For those of you with eczema, you might find that the chemo has good side effects for you. When I did ACT chemo on my first go-round, I had the best skin of my life. Maybe it's the Taxol -- I'm only 1 week post first Taxol infusion and already the eczema spots on my feet have almost disappeared.
Taxol, for me, seems to have brought with it restless leg syndrome. Not much fun. I'll be scouring the Internet today to see if I can find anything to help me sleep. I can knock myself out with oxycodone, but I don't want to be taking narcotics every day just to sleep!
DH and I were busy last night. I bought some material a couple of weeks ago and we spent last evening cutting it into 1-yard squares and serging the edges. I now have 4 beautiful headscarves and I think I'm ready for my hair to go (even as I keep hold to the hope that maybe it just won't fall out for me.. ha ha, a girl can dream, right?)
All the best to all of you.
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Good morning, ladies! My you have been busy! I want to start off with a big hug send off to ladyb1234, on the adventure that lies before you with the August thread. It might not seem like much at first, but you've started a family. It will grow (unfortunately; it's a mixed blessing to welcome new ones to what we know may be the hardest thing they've ever been through) and you will find yourself blessed beyond belief. I hope you will continue to check in from time to time, as you are part of our family too.
Mainlady and maidentired, you made it through the first day, now the fun part begins. Let us know what you are going through in case any of us has wisdom for you.
Puffin, thanks for your story. We are about the same age and I also have been a bird lover. It began as a way to connect with my father-in-law when DH were newly married. We would visit his folks – a 16 hour car trip for us – and since they had never known me, they were cautious. But Dad would sit for hours by the patio door watching his birds, and I would sit and ask questions about them, and eventually we grew to love each other. It was hard to lose him, but I have his bird books. Since BC hit I've been lax about filling my feeders, but since it's summer I know they have plenty. I've never been disciplined about keeping track of them however. We don't have a huge variety, but here in Oklahoma we have the scissortail flycatcher, which is a lovely bird in flight, and I grew to love mockingbirds when one nested in the tree outside our bedroom years ago and would stay awake at night making sounds: cars, dogs barking, cats meowing, babies crying, she was an awesome mimic. We also have raptors: red tailed hawks, Mississippi kites, and eagles. Our last house was on a wooded acre and we had woodpeckers and owls. We had a hawk nesting in one of our trees.
I've also been a genealogy buff, though not so much as two cousins who do a lot of digging. We are Mayflower descendants and our ancestors fought in the Revolution, the War of 1812 and the Civil War. In fact, west of Peoria, IL, there is a graveyard where many of them are buried, which bears their surname.
You already know I loved to garden, when I still could.
But enough of my story.
Mommymel, I treated my eczema with whatever I could find but never really found anything that worked. I believe I simply outgrew it. I know that it will still flare up from time to time. I don't even remember when it stopped being a problem. Wish I could help with that.
Chaosrains, thank you for that inspirational artwork. It addresses something I so struggle with.
And everyone, thanks so much for the anniversary wishes. Still having to take the meds every 4 hours so I'm going to call MO today about something stronger.
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ALL MY FRIENDS WATCHING AS I buzz my hair off
My Boy buzzed his hair as well 
Shaved it all off we had a hair buzzing party after my AC round 2 last night ... my sister shaved her's as well and so did my boy ♡ I have such an amazing living family... I am soooo blessed in heart and life ... I hope everyone is doing ok today my heart and prayers are with all my BC sisters ...hugs...
My sister.. My Rock.. I love her beyond definition!!!
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Aw JoeysMommy, what a wonderful thing! Sisters can be the best – I know, I have four of them! Mine, however, are totally AWOL in this whole thing. You are beautiful and your sister is awesome!
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