Starting Chemo in February 2016?
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Thanks, Serenity
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For your Taxotere viewing enjoyment!!! No sore itchy hands and no mouth sores for this girl this time!
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Asher absolutely stunning photos.
Yes, being sent for Echocardiagram at 4pm today. I am not having chest pain, but palps are still bad. Take care of it Myra.
Thinking of you all and will get to blogs when able.
Looking great chambo!
Piper
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so cute Asher. Sorry about the brca...but it is better to know.
I'm in the Claritin (took it throughout FEC with the Neulasta)
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chambo, I think the link you gave was one that let's you (as blogger) post a new blog entry; this one worked for me (you know, as a nobody) ;-)
https://frogsinhotwater.wordpress.com/
Or, straight to that one BRILLIANT entry:
https://frogsinhotwater.wordpress.com/2016/03/07/the-bald-truth/
What a great post!! I love the what to/not to do list; very helpful for colleagues. I've done kind-of the inverse; come out on Facebook, but nowhere else. And certainly nowhere public... although, I suppose this is somewhat public, isn't it?? :-D
Our DO's and DONT's differ, of course. Because of the FB format, I guess. I kept religion out of work, but on FB, I just eat up EVERY variation of "I'll pray for you" or "Thoughts and prayers" or "words to Gaia" (seriously) or "good juju headed your way" or "happy vibes, babe" or even full-on Evangelical prayers inserted as comments in their entirety! Some of that is more for them than it would be for me, but I just try to take it in the spirit in which it was intended: a positive, smiley sort of spirit. :-)
And as far as "You look good bald", what if you DO?? ;-) The closest comment I received (on FB) was... copy/paste:
"And my what a nice occipital bun you have! a good head for hairless! It's funny how losing what we think of as our 'feminine attributes' just brings out the feminine in us."On the flip side, I remember working with a fellow who had deep, DEEP creases in the nape of his neck, and whenever he got his hair buzz-cut it looked like something of a brick-layer's pattern. I doubt he ever heard "You look good bald"! So maybe these oddball compliments are a GOOD thing! :-D
But OMG I really relate with your disdain for miserable looks, sideways glances, tearfulness, and ESPECIALLY that "Have you tried XYZ? It worked for my fill-in-the-relative"!! Don't they know we've already made our choices? Can't they tell from the hair loss, if nothing else? My only required response (so far) to a woman with extreme homeopathic focus... copy/paste:
"I understand what you mean, name-redacted; but it's a bit too late to change tactics now. The science behind this treatment is freaky (kill every cell that grows fast, knowing the healthy cells will recover while the cancer will not)... but the sheer number of people who have survived because of it makes this my best option.
It feels good to be "statistically average" in this case: one of thousands of survivors who have taken this course.
Thank you so much for your loving concern!
"Do you know how long it took me to come up with a tactful response? Neither do I. But it certainly took waaay longer than it has taken me to write this here novelette! ;-)
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Echocardiagram complete. It will also show the chest wall and show if cancer there. My right breast is showing more dimpling and thickness around nipple. This fast? Now I see my breast surgeon on Friday before my trip to see MO on 18th. Can't say I can be calm. We are as on edge as we were before original dx.
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Hello Fab Febs, I have been reading along and thinking of you all. I am thinking good thoughts for all of you doing chemo this week or just coming off of a treatment. I used the Zofran at the slightest hint of queasy and it has been great. I also have Compazine which I used once when it was too soon to use Zofran again. And the lorazapam as last resort for nausea (once I think). The lorazapam is a bit of a miracle pill for nausea, insomnia and anxiety but I have to be very careful as it's addictive potential is so great. I have been sober for over 30 years and I'm not risking that because of some stupid cancer. I am feeling so great since day 9. Like weller than well, weller than before the dx. Energy roaring back. I'm wondering. Looking back, I have been exhausted for quite some time. Is it a sign of cancer? I thought it was because I work long days and have an hour commute each way.
Now I am trying to really enjoy time before going back down that mine shaft of chemo (next Thursday).
Piper, I'm sorry you are having additional crap to deal with. So sorry. You sound very very together and you are doing such a great job taking care of yourself. ((Hugs))
Sorry I can't respond to all of you, I've lost the phone and am waiting for a call back from Dana farber for my 2nd opinion appointment. Gaak.
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Piper, just sending love your way. Know that we're all here with you. I'm glad you're on top of this and will see the surgeon this week. Let us know ASAP
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Piper, thinking of you. Maybe ask for some ativan to help you through??
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thank you all for your support.
I love your attitude reflect.
I will let you know anything when I do.I will have some results tomorrow with heart and chest wall.
LTF I just may have to ask for Ativan or lorezepam. I'm up again. Who knows how many hours this time. I was up yesterday from 230 am with an hour nap in between.
This is one of those times I find myself crying. I haven't cried like this for a while. That said, I'm positive as well. Sounds like a dichotomy.
Love and light to all! 💕 Piper
Keep forgetting to thank you Serenity stats.
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Piper- I'm sure I speak for us all in saying we're covering you with love and healing thoughts. I hope you are able to rest your mind and body and find peace.
Reflect- So glad you've entered the bit where you are feeling well. You and I began to feel better about the same time. It seems we're on the same schedule. I'll go back Thursday, too, with three weeks between.
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Yes, asher, that's my schedule too. Every 3 weeks (four times). #2 is next Thursday. We have different cocktails though I see. Let's enjoy & take advantage of the rest of this phase! I have requested M/T off following chemo this time. We'll see if that's enough.
Piper that lorazepam is a very good med for anxiety/insomnia--perfect for bedtime. Please ask because not sleeping is not helpful. This Rx looks like the standard in chemo care. Tell 'em you didn't get your SWAG bag on the way in.
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piper- lots of thoughts for you over here. And I agree about the lorazepam. I did not want to take it at first, but glad I have to help reduce anxiety and get some rest
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I took lorazepam for the first time last, both to help me sleep after the heavy steroid dose (on my last chemotherapy medicine I just took Tylenol p.m., but the steroid dose was much lower) and because I was quite worried about the bone pain that might start today. I had a wonderful sleep.
Very tired this morning because I am done my steroids, however so far the bone pain isn't bad. A bit of an ache across my upper back and shoulders and along my hipsbut nothing terrible ( I am quite active and used to feeling achy, hopefully it won't get much worse than what I'm already accustomed to). I took a couple extra strength Tylenol, and a long nap, and now looking forward to a few hours of Netflix.
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I have to confess to an overwhelming sadness today. Reality has set in. This isn't going away anytime soon. Sure, as everyone so helpfully reminds us, this too shall pass, but not for quite awhile. This life change is permanent. I read all about the lingering side effects after chemoand as a woman of 58 I realize my dreams of getting back in great shape some day, being strong and fit the way I was before will now be a lot more work. Sure, we'll do it, we're strong but this just sucks. Rant over.
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I hear you Myra. I get So sad and mad when I let myself think too much. I'm 42 years old and was going to my Middle Ages as I'd hoped: the best shape and fitness of my life, my marriage was happy and perfect, kids getting older and easier, making some really positive changes at work! Everything was looking up after a couple rough years and the future was so bright. I don't know how this is going to affect any of it. It's very depressing but I just try to live day by day and stay positive as much as possible. ((((Hugs))))
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Many hugs to you, Myra and LTF. I was training for a half marathon when I got my diagnosis. I was in the best shape of my life. I'd like to think, although the thought of getting back there is daunting, it's giving me a leg up on kicking this cancer's ass! 😘
Reflect- I agree. Soak up the good as much as possible! I'm trying to rest up and eat up in preparation.
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Myra and LTF yes I concur. My weight is going down again with eating and steroids but that isn't fitness. Feel so yuck.
My echocardiagram is fine. My headaches bad. I'm getting a sleeping pill but not lorazepam. I forget the name.
As for my right breast no invasive testing can be done during treatment. Which I knew.We know chemo is working on cells anyway right? Maybe an ultrasound. Team Drs want to see me anyway. Surgeon will examine and keep onc informed. Onc wants to see me in person and check how my treatment is going and how I'm coping. I want to know about my right breast before June!
Onward with our fighting selves!!!
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I feel like I am walking through cement from the steroid withdrawal, but at least I am walking. Going for a little stroll right now. Body aches are not too bad. Some tightness across my neck and shoulders, also across my hips I've taken some extra strength Tylenol. Hoping to avoid the Hydromorephone unless I need it, because I don't want to deal with constipation. One thing I am glad for us so far I have not had any serious digestive issues, I'd like to keep it that way
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I hear you ladies. I turn the big 5-0 just after chemo ends and before radiation begins. I had planned to use the month as part of a large group of women cyclists who ride around the circumference of the state of Oregon...1400 miles in 30 days. It was my F-U to turning 50. Well, now I just will be hoping to be done recovering from the last side effects of the last round of chemo before beginning the next adventure on the road to cancer cure. Quite a shift in plans.
On a side note, my hands have not itched for the last 4 days. YEAH! When I finally met with my MO, he said it was basically the chemo leaking from the tiny capillaries causing a chemical burn from the inside out...thus my phrasing of "fire itch" was just about right. So we iced 'em this time. And I'm avoiding all hot water, and high circulation activities (like manual yard work with tools) for the next 7 days to see if I can prevent it from happening this round. If not, we will be looking at switching off Taxotere, as my hands are now beginning to peel from the burn.
Good times.
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Hello all! I have been in bed and absolutely miserable since chemo #2 on Tuesday. This is worse than the first one. Can't even picture the food I ate during the infusion... If I do, I'm instantly nauseous. Smells, thinking of food, hearing my husband and kids talk about dinner... Makes me so sick. I've been living on water, watermelon and bananas. Just added pineapple and green apples tonight. My headaches are brutal too.
I'm not a complainer... Ever! But this round just sucks! I'm keeping up with the zofran, tums, pepsid AC.... I hope tomorrow is a better day
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i'm so sorry mlp. The antinauseant they gave me was called stemetil, have you tried that one I can't remember, but it really helped me.
Just remember that chemo is coming out of your system, you alternates corner soon. ((Hugs))
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MLP3 I felt the same.. #2 is horrible!!! i had my infusion Tuesday as well, and although i wasn't nauseous, i couldn't imagine eating or drinking bc of the taste in my mouth. yesterday i broke down and asked my MO for an infusion of fluids and I feel SO SO much better today. I wonder if this might help you too? The nurse told me to call my MO anytime, report i'm having problems hydrating/eating and they would put in an order for fluids only and take care of me. i felt like a different person today! thinking about doing this every time as I imagine the fluids help us flush out the toxins. hope you get to feeling better soon!
Myra, that feeling has hit me like a ton of bricks too... grieving my previous life as I knew it... giving up control of how i had mastered it... and humbling myself accepting that i am starting over, from scratch, as a student of this new unwanted path. it sucks, it's so damn uncomfortable, and it is not fair. however, when i get upset, i remind myself that my life has always caught me... it has never truly let me down. EVER. i don't always understand why it's dragging me through a thunderstorm without my damn umbrella, but every time, no matter what the scenario, there is a beautiful awe inspiring rainbow on the other side and the sunshine feels so so good on my skin. i try very very hard not to worry about what might happen, (how might my quality of life change, what might menopause be like for me and my partner as 40 year old newly weds) because a friend of mine who battled this fight 5 years ago continually reminds me that these thoughts do not serve my healing right now and the unknown future is always worse than the current reality. She was right about chemo, even though its been tough it is nothing as bad as what I had imagined. I have learned to stay away from the internet!!!
be sad, be true, let tears cleanse your heart and your body to wash this cancer away so your new life can amaze you.
you/we are strong. you/we are special.
we got this, we are gonna be ok. (even though it F***ing SUX!!!)
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I just wrote a huge post that I just lost by scrolling back
So now, short and sweet.
ALL OF YOU are in my thoughts tonight. Hoping Frances. Piper and MLP and anyone else suffering with SEs I hope you get some answers/relief soon!
Chambro and LTF- nice blogs! I want to do as well...hoping my cousin can set up for me while in town this weekend.
33Triple- so glad the fluids helped you!
Asher- I am BRCA 1&2 negative and My Risk panel negative for everything, but have a HUGE family history, and now my sister is going for a biopsy next Thursday. Honestly, I think we have our own "family gene" that hasn't been discovered yet. And I plan to advocate for my 9 year old daughters' health accordingly.
Finished Taxol #3 today. Feel good, just tired, and have gained 5 lbs. Hoping rain doesn't keep me from yoga tomorrow.
...and onward We march...
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I finished round 2 Tuesday and I'll have to say, this round is so much better than round 1. I think the big difference is the neulasta injection I received on Wednesday. Last round my white count went down to .6 within 5 days then got 3 days of neupogen. I ended up with thrush and cold sores lining my nasal passages. Sure hoping to avoid all that fun this time.
Anyone try melatonin for sleeping? I take 10 mg to counteract the steroids and it works very well.
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chambo - sorry about biking, glad about hands. Good times indeed.
MLP3 - I'm so sorry. I can relate to headaches and extra heartburn. Hope today is better. Today is starting to be my worst but I'm forcing myself to my surgeon's appointment. Will have to take stronger stuff for constipation too.
33triple - agree with all. To boot I've taken my dexamethasone wrong! I didn't confuse it last time. Off by a pill. Ugh! My jaw pain bad but not like last time and it goes away. And yes, we got this!!!
Nolagirl - thank you. I'm nervous for when my Taxol starts in April.
Dgail - I'm so glad for you. I got zopaclome for sleeping but don't want to be out that long and feel hungover.
How are you all told to count your days? I'm told day 1 is day AFTER treatment.
I'm a little fuzzier this round.
Peace, love and light to all!
Piper
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MLP3- I'm so sorry! I hope you feel better soon. The same thing happened to me when I ate during treatment. I still can't think about falafel without my stomach turning.
Chambo- Yay! So glad to hear the itching stopped!
33Triple- I'm hope today brings you better. ((hugs))
Nola- It's amazing what you find out with those genetic tests. I'm actually discovering ancestral information. Maybe you do have your own genetic family! I'm glad I know for myself and my daughter. I'm trying to be very honest without freaking her out.
I had a call to my brother today, too. He's not been tested and I wanted to make him aware of the potential impact to him and his daughter. Knowledge is indeed power. I think it's awesome you are still doing yoga. That sounds great!Dgail- Yikes! Cold sores in your nose! How wonderful this round is going so much better.
I did the buzz cut today. My hair is really starting to fall out and my time in the shower was getting crazy with all that hair coming out. It feels nice and so low maintenance!
Love and healing to you all!
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OK guys, I'm well and truly off the tearful, feeling sorry for myself mode and back into feeling super positive and looking forward to getting all this Cr@ppy Chemo, Surgery and Rads over with and getting on with my wonderful life. I'm sitting in the chemo clinic today having my 3rd infusion of FEC, and that means I'll be halfway done by this afternoon. Yay!
So sorry to hear about all the scary and horrible SEs. I'm crossing my fingers for you all that your medical teams get it all under control pronto Piper, MLP, Fran, Triple, and I'm sending you Cosmic hugs from across the Atlantic.
Let's take it day by day, breathe deeply, and we can do this! Asher, your not so littles are adorable, you also have a great attitude. It's an long haul emotional roller-coaster we're on isn't it. I go from total crying and despair to being really quite happy. Does anyone else have this sensation of heightened awareness of beauty and just treasuring life and appreciating people andthings more than ever (on good days?)
Sorry if I'm rambling...... Love to you all, love the blogs Chambo and LTF. Totally identify with all of it! XX
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I slept 10 hours last night and woke up just as tired, men steroid withdrawal is exhausting. The aches still aren't too bad, they are there but not driving me crazy or anything, I took an Aleve last night to help me sleep. Hoping the fog lifts today and I got my energy back for the weekend.
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I'm right there with you all. Chemo #3 was on Wednesday and this is the worst so far. I am soooo tired. I slept over 12 hours last night and am still tired. Ugh!
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