Starting Chemo in September 2017

Travel_Girl

OCDAmy - on your question -- did cold capping work? My short answer is 'Yes' -- it did work and my entire journey through chemo, I had hair and it helped mentally -- and I would do it again in a heart beat. There is a difference between 'did it work' and do I look fab?

The longer answer is -- my hair is about 4 different colors - as you can't dye it, and it is very thin (it was very thin to start out with and now very very very thin).

Part of the color issue has to do with the fact that i wore my hair blonde (and the natural is mostly gray with a little brown ) AND ... my hair is still shedding, so it is even thinner now than when I finished chemo. I invested in a very expensive 'Topette' aka kind word for toupee -- to help both help with color and fullness -- and while I was confident with it in my non-work world -- I was very very self conscience about it in my work world. Because it was so expensive, I cant' seem to find a stylist that will be confident to cut it exactly to suit me -- I am working on that --

It seems silly to worry about such things -- It was a -- delayed reaction as I worked all through chemo -- I did it remotely - so it was the first time I was in my high powered world since August -- just an adjustment.

Combo of 'hair helper', everyone staring at my chest (or I thought it!), loss of 15 lbs (plus small chest makes me look a lot smaller - I was almost a D cup prior) -- and clothes not fitting all that well -- as I don't want to buy a ton of new clothes, as I think I will gain some of it back and my chest will be a little bigger. In hindsight, I should have spent more time on a few well fitting outfits -- that would have helped.

Needless to say, glad to have that milestone over and onward to finding ways to not care about it. I am vain.

OCDAmy

Travel Girl, I totally understand! I had considered cold capping and had gone as far as contacting them. Then I tired not to wash my hair for several days and realized that I just couldn't do it and go into work every day. I meet with a lot of high end donors and we have tons of meetings with board members and other volunteers and I just couldn't make my hair look good. I too have thin and colored hair. If I could have worked from home I would have done it. I am glad it worked for you. How long until you can color it? I still feel like everyone looks at my chest!

I wish I had lost weight, I did the opposite and gained 10 pounds. I decided after rads were over that was it, I was going to lose weight and exercise more. So now I have to make that happen.

Best of luck to you! When do you think you will have the exchange surgery?

mkn86

my dear september ladies,

I wanted to say thank you for your support while i was shocked over being recommended to get a mastectomy. I have taken the time to read materials and information i could find. your recommendations and links included. and i have to say i am much calmer knowing how many options i have. I have also read about threads here of ladies living their life after whatever type of surgery they decided on and reasons for doing so. And that has helped immensely.Thank you so much

That said, i completed dose 10 yesterday. My doctor removed carbolatin already because of my allergic reaction last week. and platinum-based medications are now included in my medical allergy list. but despite that i am happy i reached 9 infusions of it.

My infusion port is intact/in place as confirmed by the xray that my MO ordered.

However, yesterday, 20mins into paclitaxel i had heart oalpitations. i was about to fall asleep from the benadryl and then i felt my heart pount that it woke me up. i alerted my nurse, the doctors listened to my heart and it was literally skipping a beat but i had very little difficulty breathing. They gave me another steroid and ordered stat ECG and 2D Echo. Everything came up normal. so it might have been a fluke. 2 doctors and 2 nurses were checking on me on rotation throughout. Ince my vitals stabilized for a good 20 mins they started up paclitaxel infusion again. but slowly as precaution. and i actually finished the infusion. YAY!

my MO is flying out for a convention next week. he said since i was having palpitations, he is not comfortable with me having an infusion with him not around. So dose 11 will be delayed for maybe 3-4 days until he's back the week after. I think i need the extra rest too. And i'm looking forward to the extra days when food will taste phenomenal.

please pray for me i am so close to 12th dose and i really want to complete it and know that i gave this cancer everythigg i've got.

#finishstrong

PauletteK

Kat, I’m so sorry that you have so much trouble, I know how bad you felt about mastectomy, I’m glad you’re much calmer now. Will pray for you on your future infusion, it’s so scary when you have heart palpitations, when I had taxol infusion my heart speed when fast that really scared me also. Rest up now and be strong.

mkn86

it's okay now ir maybe it's the steroids talking hahaha but i'm also glad that the medical team at the hospital is phenomenal. i really trust these people with handling my care.

yes it's scary. it just happened and i trusted my gut this time that something might be wrong.

Thank you paulette. you september ladies have helped me so much that even though i've been active in the november thread i still come back here all the time.

Oh and CONGRATULATIONS ON RINGING THE BELL WONDERWOMAN!!! I’M SO HAPPY FOR YOU!! 🎉🎉

PauletteK

Mkn, I go to November thread and lurk from time to time, best wishes for you and send you prayers.

Travel_Girl

OCDAmy - my exchange surgery is scheduled for March 8th, my pre-surgey appt is Feb 20th - I have to get to the size I want by then -- I am still deciding, I have not reached 200 cc's yet -- going slow.

Will keep you updated. So far so good with the areo xpanders

OCDAmy

Just thought I would check in and see how everyone is doing? I know most of you have moved on but just wanted to catch up. I finished rads last Friday and met with my BS this morning for my 6 month follow up. It was quick and he said everything looks good, come back in a year. Since I had BMX, no more mammograms in my future. It was the strangest feeling being there. I was in the same room I was in the first time I met him and he went over the biopsy results and told me I was likely Stage 2 and mastectomy was my only option (I had both a large IDC plus DCIS in a separate location so lumpectomy was out of the question.) I remember the sickening fear I felt that day and in the months to come. Today I felt such calm. So glad to be on the other side of this and praying I stay cancer free. I pray the same for all of your tough ladies.

mkn86

Amy congratulations on finishing treatment! go and celebrate!

Will you be taking medication still? hormone blockers, etc?

how long was recovery for you between surgery and rads?

Travel_Girl

Congrats! How was rads comparatively? And when will you be able to schedule replacement surgery?

I am counting down the days, although I know I am not stretched enough, so February is all about opening up and loosening up my peck muscles, range of motion and stretching -- PT says it will help with the surgery recovery - so that is what I am working on.

Thanks for the update. Cheering you on.

mkn - -how are you doing?

mkn86

hi travel girl! sounds like quite the process for reconstruction. but i’m glad to learn about these details.

I’m okay this week. on two antibiotics for dry cough that isn’t going away. also i’ve been reading about surgery. but some days i stop because i want to hear what the surgeon says.

i’ve been able to work (remotely) the past two days and that makes me happy. i have a sense of achievement! haha and also took walks every day. i’m at our ancestral home this week since chemo was moved (had palpitations last week so doctor wants to be there during infusion 11 and 12 to monitor).

i’m grateful for fressh air and seeing the family dog and extra days to enjoy food and work and walking(even if it’s just 10 minutes and veeeeeeeery slow). Trying to build strength for surgery despite being nervous about it.

and in general just praying that whatever decision i end up making with the surgeon is the right one. and that it’s something i can live with. i read something too about not letting the statistics scare me. numbers are numbers and these are counting what has happened after the fact. That stats should only be used as one of the factors of deciding what to do with treatment and that it does not define our fate

OCDAmy

mkn, so only two infusions left? I'm sure that will be a joyous day. You've had a rough road, please let us know how you decide to move forward.

Yes I'll be on hormone therapy. I see MO a week from today to discuss. At my last chemo he said something about making sure I'm in menopause and not chemopause, I guess that's a blood test? I see PS in 6 weeks and will discuss implant surgey but she said minimum of 3 months after rads. Ready to get these expanders out. All depends on skin which is red and peeling right now. Rads fatigued me more than chemo but it wasn't too bad.

PauletteK

Mkn, only two more to go, you can do it!! We will all cheers for you! You are one tough girl!

I have two more radiation to go, I’m counting down now. After radiation will take hormone therapy just as the other. I think you will be he same too.

Heading out for my radiation now.

mkn86

hi amy! oh yes! i already have my celebratory meal planned out once my taste buds come back. hahaha! and having the chance to talk to colleagues at work really took some of the isolated feelng away. had a bit of neuropathy this time and my legs felt wobbly and it took longer for it to go away.

just like paulette, i am looking forward to good coffee. i have my favorite one already waiting. it's hazelnut flavored instant coffee from singapore. they call it white coffee and i think it's because they lightly roast the beans in margarine. so decadent!

thank you paulette! I remember just feeling sad that everyone on the thread had a shorter chemo length than me and yet here we are, it's january and you ladies have been so kind tk check in. i don’t know if i’ll be on HRT, i’m triple neg.Almost at the finish line. Same with your rads! finish strong!

I think i will talk to my surgeon about considering reconstruction later. i will however go through a UMX if the surgeon suggests that. and a BMX if that is what she also thinks is best. i will be talking to a therapist until surgery time. the hospital siggests a few sessions mostly because it's an MX. Also planning on going on a retreat for two days. up in the mountains. mostly for fresh air and to give thanks for going through chemo and to pray that my decision is the right one.

it's ironic how i have zero body image issues before diagnosis (i have a “dent" on my forehead from a minor playground accident when i was 5, being chubby never bothered me, have zero problems looking like woodstock from peanuts now and walk around the yard without headgear and well... not particularly attached to my boobs which is probably why i'm in the stage 3 mess in the first place) and yet here i am having trouble with MX. but i do feel much calmer about it now. I even sat down and listed the top priorities for me with surgery (get cancer cells out, clear margins, pcr, least amt of surgery/least amt of risk, and that i won't be too lopsided after — which is why going flat or a breast reduction on the left is an option — going from a B cup to an A or AA completely not an issue) ... i worry about recovering in time for rads if there's an incision on my abdomen for recon. and also if removing ovaries will factor in. worries and questions that my doctor will either have answers or options for.

so finish strong for chemo and fingers crossed for surgery.

MamaFelice

Good day ladies! I sure enjoyed checking in on all your updates here! So wonderful to see everyone approaching the finish line and beyond. Simple, routine life realities have changed for all of us for sure!

I have 1 more TC (completed 5/6 last week) to go! I would be so happy to be done right now. This chemo stuff really builds up in the system and really stinks. But marching on and feeling thankful every day that I only have 1 left!! Yay!!

I love the ladies of this thread-- TravelGirl, you always bring giggles and laughter-- a lightheartedness that is so needed and appreciated by all! Paulette, you are like mother hen watching over everyone and making sure we are all taking care of ourselves and feeling good-- thank you for always thinking of others. Mkn86, as a fellow foodie, I have loved how your entires usually include a delicious description of a regional dish that you cannot wait to enjoy....and that with all the different complications you have had, you march on with a positive stride. OCDAmy, I so often feel like the emotions you share in your posts are coming from my own mouth--& heart! Thank you for always sending prayers and hugs to us all. And Wonderwoman-- you definitely are just that! Your young strong body and the unconditional love of your sweet little girl will sustain your good health for a LONG time!

Though I didn't start chemo until October, I always enjoyed the positive and supportive nature of all the women of this thread. As I look ahead to the end of the month and my long chemo journey coming to an end, my heart is filled with a tremendous amount of gratitude, and I have all my virtual friends to thank for it! Paulette-- thank you for starting the Facebook group where we can continue to stay connected and all grow even closer! Please be sure all these lovely ladies hav an opportunity to be a part of that group if they are not already.

Now all that mushy stuff aside.... when do I get to have my port taken out? Is this done day after last chemo? It couldn't be soon enough for me! 😜 I don't want them to think about giving me any more extra "just in case" infusions!!

And talking chests, I've really gotten used to being flat. Easy this time of year since I go out all bundled up with layers so there is nothing for anyone to see. I can't stand how bloated my face is from all the steroids though-- when does this go down?? Thanks ladies and lots of love to you all!

OCDAmy

MamaFelice, one more to go! Yay! Please let us know when you finish so we can celebrate with you. My MO had me wait three weeks after chemo before taking the port out. He wanted to make sure my white blood cell count was not too low. I was a little apprehensive, I kept thinking what if the cancer comes back and I need chemo and that port again? But I wanted it out. It was much easier than putting it in!

PauletteK

MamaFelice ... just one more to go yay!!! This journey is sooo long you will be so happy when it’s over! I still have my port he wants to make sure everything is fine first. I’m going to have my bone density CT and kidney ultrasound baseline on 1/30,I can’t have mammogram until April because my RO said radiation makes my breast inflamed now. So I don’t when would be good time to take the port out. So I need to go in flush my port every 6 weeks.

I didn’t know I’m a mother hen 😂😂😂😂 I like the FB closed group so it is easy to communicate.

Mkn, as I remember you are still young, once you finished this journey you will bounce back and be pretty again. Do not give up yourself, we all want to live and be pretty and feel good.

Let me share a pretty flower with all of you, taken this picture this morning,

mkn86

mamafelice and paulette thank you for the heartwarming words

I didn’t have chemo last tuesday. my MO was weighing the benefit of finishing my last two doses of taxol vs. the risk of an allergic reaction. we agreed to try this coming thursday. he increased my steroid dosage. it also okay that chemo was moved to tomorrow. gives me time to deal with the consultation with my surgeon.

Surgeon confirmed unilateral mastectomy and wanted to have a plastic surgeon in the OR in case they need to move skin to close the site where the tumor will be removed. i said let’s involve the PS now. Because i also want him to take tissue from a low risk donor site so as not to touch my abdomen. i want to focus mu energy on recovering from the mastectomy and then go into rads.

i’ve decided to go for reconstruction later. once i am past the high risk years. who knows? Maybe by then i’ll be comfortable with a UMX and not reconstruct at all. anyway, when i was thinnkig about my “options” i thought about how i didn’t want to spend more time at the hospital fixing what the world will see and instead i want to finish treatment and see the world!

I still feel sad... i’m turning 32 in april and my body will be very different by that time in a lot of ways because of BC. BUT i need to remember that life is more important. And there are many more important things to pray for: not getting lymphedema, that this is the right decision, that the rest of treatment goes smoothly, that I am able to finish the last two infusions of taxol.

PauletteK

Mkn, don’t get depressed you will be fine as soon as you finished chemo then you have your surgery. I can tell you chemo messes up our brain, makes most of us get depressed. It could be the steroid. You will be fine, sure our life will change, we get tougher and wiser. We will look at life differently. Yes you have options and you don’t need to decide right away, you can think about it and do it later.

You are still young, many BC survivors live many years afterward so do not get depress and worry too much. Attitude means a lot

mkn86

thanks Paulette. I’m focusing on today’s infusion first. the rest i will deal with much later on. .

Travel_Girl

Mkn -- sending good vibes your way. Your body, your choice and one day at a time, I love your line ''focus on seeing the world, versus the world sees!' -- Just love it - perfect attitude.

Let us know how things are going

MamaFelice

Paulette-- thank you for the lovely pic of the bird of paradise flower. Truly lovely!

Mkn86-- I have been amazed how strong you have been through this entire process! At such a young age you have been placed in a life situation that few women your age have to face. There are reasons that this is your path beyond what you can fathom now. When I had my lymphoma at 23, I kept wondering why this is happening to me.....but now almost 25 years later, I look at my life with such gratitude and give thanks for my lymphoma because I would not have such blessings if my life was not put on this path. Sounds crazy, but hang in there and dream of all the joys that lie ahead for you! Sending Big hugs your way!

mkn86

thank you MamaFelice and Paulette. I really appreciate all the kind words and the comfort. some days i feel like such a baby/wuss for not being stronger. But a friend told me i have to be more forgiving to myself and having cancer.

Maybe that is one of the things i need to learn. i trust that everyone around me accepts me. sometimes it’s me who’s tougher on myself than anyone else.

This week has been rougher coming off the steroids. one more dose. i can do this! and then face the next steps head on.

I acknowledge that it will be difficult. but i have to remember that grief is okay. grief for my old normal life, grief for parts of me that i stand to lose. I promise will allow myself moments of weakness. but i also have to push myself to stand up again and also recognize that there are so many things to be thankful for despite the circumstances. And i promise to allow myself to dream and go for the life i still want to live.

that being said, i will now go and look at puppy photos while i weep just a liiiiittle bit.

PauletteK

Mkn, I admitted I’m weak now, I always try to be a strong woman during chemo I became weak, I afraid to get sick, every little thing scared me. So you are not alone.

Here is a doggie picture for you.

OCDAmy

Mkn, are you getting rads next? Cancer just sucks. I'm feeling a little more anxious now that I'm done. What if it comes back? I'm trying not to linger in that too much but I imagine its something that will be with me forever. I'm thinking of you.

mkn86

that’s so cute Paulette!!! doggie yours? is it a he or a she?

Surgery is next for me Amy. still prayingn for a miracle on that surgery but have a more realistic grip on it. long road ahead still. maybe i’ll label this time in my life as the longest year. some days i feel super optimistic and some days it’s just really down in the dumps.

I think there will be struggle for us to get back to things before treatment. i wonder about that too. if i’ll ever come back as a consultant with the same attitude i did before etc. for sure it will linger but what was that movie? the one where they said “ time wounds all heals “ i’m kidding. We’ll make it. It will be rough but we’ll make it :

mkn86

i have officially graduated from AC + TC chemo. there was no bell at the hospital where i am being treated.

on to surgery! which at the moment is scheduled for a month from now

OCDAmy

Mkn..WOOT WOOT! Must feel great, it's been such a long road. here's hoping you recover well and can get on with the surgery. Will be thinking about you.

PauletteK

Mkn .... woot woot!!! I’m so happy 💃🏻💃🏻💃🏻💃🏻💃🏻 You finished with chemo!

Send you some flowers....... keep us posted for your surgery.

mkn86

Paulette those are lovely orchids thank you!! Are they from your windowsill? you have a green thumb!

When i lived in Singapore i bought a few succulents and they died on me. i can raise dogs and train them but plants always die on me. 😂

Yay! done with chemo! 💃🏻💃🏻