Starting Chemo March 2015

ninjamary

Katy - AWESOME on the port removal! Congratulations.

Jackbirdie

Thanks Ninja-

As usual they lied. It hurts like H today.

It's never REALLY over it seems. The pain woke me up at about 3am. Icing is and oxy-ing it. I think the ice helps the most. I should have known. When I saw smoke coming up from my chest that I would feel burned today. Plus, they always lie.

Carrie37

Congrats Katy on the port removal. You're right. They do lie. I was very hesitant about having mine removed as I still have Herceptin until next April. I have changed my tune since and can't wait to have the little bugger out of my body. I don't want to look at it anymore. I feel like all of the doctors are not straight with me most of the time. "Oh, you'll be fine in six weeks (post surgery) ." Yeah right. I don't believe them. Bad attitude? Maybe. Truthfully, I am scared to death. I don't want to do the surgery because I don't want to deal with recovery and never having my boobs again. I feel like a big baby since this surgery could save my life and all. I just can't accept it. I hate it. Any words of advice or ideas for shopping list as I prepare for the surgery??

I hope all are well. I have been busy enjoying life PFC but have been reading posts. Thinking of you all as some of us move on to different treatments and different phases of survivorship.

Jackbirdie

Carrie- I'm so sorry. I hope I didn't scare you. Remind me are you having BMX? Can they take the port out while you are "out" for that surgery? What is your surgery date?

As far as preparation is concerned, there are many things. It does depend somewhat on whether and how much help you will have during the day in the beginning. I live alone, and it was doable, but I was prepared.

Not to be too lazy, but there is a girl having a BMX today, who lives alone. Her bco name is Artista, and she started a thread "anyone else basically alone?". If you get your smart phone out, or a notebook, and read through that thread you will get a very good idea of what you may need.

I have noticed that some hospitals do a much better job than others sending you home with supplies etc. Unless you know for sure if they will be doing that, I would assume not, and prepare your post surgery kit yourself. In our group, Lee (Indygal) just went through it and may also have suggestions.

It also depends somewhat on whether you are doing recon. The main difference I believe, from woman to woman, doctor to doctor, is the number and placement of the drain "grenades" that you must maintain (strip) and record fluid output after surgery. They will teach you how, and you should try to do it yourself before you leave the hospital.

There is also always a lot of discussion as to how to handle where to put the drains (they make camisoles with Velcro, but some people prefer pinning them to their clothes- in any case you don't want them to dangle. Showering is a challenge. You should definitely buy some individual alcohol swabs for drain stripping, as they usually don't send you home with enough, it is very important to work in a very sterile way to avoid infection.

You will have to sleep on your back for a while. Little pillows of different sizes can be used to help you get comfortable. Some sleep in a recliner. I didn't find that necessary. The same little pillows will be helpful to put under your arms for your first follow up appointments in the car (as a passenger, please!) as every bump the car hits will hurt for awhile.

The rest of the advice has to do with having anything you have to reach for, like plates, glasses, food items you use a lot, down on the counters because you won't be able to reach. And to have some jammies and clothes that button in the front instead of pulling over.

Like everything else, everyone is different. Healing rates, pain levels (if you have pain, stay AHEAD of it, even if you are not accustomed to taking these kinds of meds. You will do better in the long run. The body cannot fight pain and heal at the same time). Plan to have lots of protein on the menu, I made protein powder shakes with frozen fruit if I didn't feel like eating. You are ER+ so stay away from soy based protein powder. I use whey based, but there is also rice based.

If you have people offering to help, ask for rides to follow up appointments. Ask for a casserole for the freezer. Ask for a little help straightening up the house, making your bed with fresh sheets, walking the dog, taking the kids to the park or a movie. People don't know what to do or say. They will appreciate being given small, specific, manageable tasks to do.

Get some bendy straws. It's hard to drink fluids when you're in bed without a bendy straw. 😎

Have some thank you notes and stamps by your bed so you can keep up with them. People will love it and keep coming back to help. They probably would anyway, but it will make you feel good to, and you can do them in bed. If you like to read, stock up ona few books, or give a friend your library card and ask them to pick a variety out for you.

So read Artista's thread, and I'm sure others will chime in here. Oh yes, one more IMPORTANT thing. Anasthesia and opioid pain meds will easily constipate you. There are a number of remedies. What worked the best and most gently for me was a combination of colace (stool softener, OTC) and Senekot (a plant based "pusher", also OTC, not cheap though for either.) Try Amazon for better prices.

DO NOT WAIT UNTIL YOU HAVEN'T GONE FOR 3 days. This can quickly turn into a dangerous situation. I would actually recommend you take it prophylactically as soon as you get home from the hospital.

You will do very well. You are a smart and caring person, and I suspect there will be lots of people who can help. But you have to get comfortable ASKING for it. Most strong, smart, independent women like us don't like to ask, and don't have much experience asking, but you must. Surgery is a team sport.

Many hugs, and PM me anytime. I mean it. I am here for you

slothabouttown

Carrie,

I kept my drains in a fanny pack. They are easy to find because the hipsters are resurrecting them back into style. I didn't like wearing the drains under my shirt because they created ugly bulges No matter how I arranged them. Since I was sleeping on my back anyway I even wore the fanny pack at night for sleeping. I had the compression band with Velcro rather than the camisole with drain pockets, that may be better at concealing the drain "bulge" under the shirt. My only other advice, take your pain meds! There's no reason to try to tough it out, you'll feel better, sleep better and be more entertaining to your friends if you stay medicated that first week after surgery!

SueH58

Sloth - you crack me up.....

slothabouttown

Oh, my other MacGyver drain invention (maybe I should put together a kickstarter campaign for this one)... I ran a shoestring through the top of a beer can koozie and wore that to hold my drains when I showered. This was a lot quicker than pinning each drain to a string and I could fit all 3 "grenades" into the one koozie which meant I only had one awkward thing dangling in the shower instead of three.

ksusan

I wasn't allowed to shower with the drains in. That first shower was excellent!

I got a button-up medical scrub vest with nice big armholes and nice big pockets, though in fact I wound up with a chest binder and it was easy enough to pin the drains to it. I now use the vest for radiation--I just unbutton it and fold it back as I get on the table.

Are you ready for the most attractive photo EVAR ON TEH INTARWEBS??!11!

(In other photos in this series, I wore the sieve on my head. I no longer remember why.)

Jackbirdie

KSusan, the first thing that popped into my mind when I saw you in that get-up and what looked like a butterfly net was, Dr. Livingston, I presume?

Bekah, don't you have a slew of appointments, scans and tests this week? Or did all of that get taken care of during your unexpected vacation to the ER? Please let us know how you are managing all of that. Thinking of you

Carrie37

Thanks ladies! Katy, you didn't scare me. Trust me, I was freaked out long before I've read posts here. I am having a BMX with TE placement on August 20. I will read through some other threads too.

KBeee

Amy, glad your daughter is ok.

I hung my drains on a lanyard when I showered. I tended to stay inside where it is air conditioned, do I wore a hoodie inside out and kept the drains in the pockets

ninjamary

Ksusan - OMG...so that's what you gals are always talking about with the drains. Damn. I will no longer complain about my port.

Katy - They do lie don't they. My MO always asked if I was still working and that chemo should not inhibit me from work. What? Granted I did still work/worked, but there were days I could NOT work because of .... you guessed it....chemotherapy. I always took offers of help. My husband is too proud and would ask me to stop people from bringing over food. Uh...no, sorry, but precooked meals were a relief and a huge help for me. On a final note...I always quit my opiates because of the poop issue. I'm a big fan of having a bowel movement (gross I know) but I feel like a majority of toxins come out via a BM rather than a pee.

ninjamary

swelling - anyone have issues with this? My last taxol was a week ago and the swelling this time around is getting worse and worse. I think the premeds they gave me always took away the prior weeks swelling. My fingers are like sausages and I went from skinny ankles to big fat cankles. Walking is a pain anymore. I can't wear shoes anymore either. Thankfully it's summer. I'd call my MO, but since they felt neuropathy and prior swelling issues were not important I don't feel like wasting my time at an appointment to hear the same thing.

Trvler

I would call. If you can't call your doctor, what good are they? I haven't had any issues with swelling.

SpecialK

ksusan - reality - but hilarious photo nonetheless!

I used a clean shoelace and strung the grenades onto it and showered that way. I never keep my drains long and my PS encouraged showers. Some use a couple of long pieces of dental floss instead of a shoelace - disposable so it is always clean.

ninja - swelling can happen on taxanes - keep an eye on your BP - it can creep up. At you next appt discuss a non-potassium leaching mild diuretic like triamterene to help with the fluid retention.

eheinrich

Ksusan! Thanks so much for sharing that!

ksusan

So annoyed with my MO at the moment. Information and scheduling have been really inconsistent and the story keeps changing on their end, with the assertion each time that they're not changing anything. E.g., "I want to see you toward the end of your radiation" has become "I can't see you until you have post-radiation blood work." Fair enough, but I scheduled the appointment in the range she told me two months ago. The nurse doesn't know how long the MO wants me to wait after radiation to get blood counts (so she can assess for beginning tamoxifen), or when the MO is going to start her time away from work. Well, then I can't really schedule either of those things, can I? "We can do the blood count here in 10 minutes--that was the plan." No, the plan was and has been that I do quarterly draws with my PCP's and MO's requests at the same time to decrease number of blood draws since I had lymph nodes removed on both sides. Not to mention that when I asked if the 15 minute appointment scheduled two months ago was enough time, I got back a snippy reply about how it was enough time "as discussed" (we didn't discuss this), but a day ago the MO changed it to a 30 minute appointment. Yup. And my MO is going to be away soon, so we're up against that timing as well.

Also, I'm married to a private practitioner, so my appointment change means changing her client schedule in order to be able to accompany me. It's a 2+ hour drive each way to the MO (meaning she has to reschedule up to 5-6 clients).

So, waiting for the nurse to catch the MO, ask her how long she wants to elapse between radiation and blood draw, how long it takes for my lab to get the results to her, and whether we can possibly sandwich this appointment in before she's away.

Italychick

so 2 and 1/2 months after final chemo, all my long eyelashes have fallen out and I have just little ones about 1/16th of an inch long. Argh! Oh, but I have eyebrows again. I'd rather draw on my eyebrows and have my eyelashes.

When does it stop?

greenae

It's the freakin' Taxotere. Same thing happened tome, Theresa. Seems like my eyebrows grew back last night! Lashes are taking longer. And I am using Latisse.

And eyeliner- lol

Arlene

Trvler

I got some Latisse but I am kind of scared to use it. They said I should wait until after chemo. Any idea how long?

eheinrich

My eyebrows are growing in blonde so it looks like they are still only half there - the originals are brown. Eyelashes are taking forever to fill in. Never lost them all but at least half. Not going the Latisse route though. I feel like I've had enough of meds and such.

greenae

i waited til 6 weeks PFC, that's when my brows started to go.

Italychick

thank goodness for eye liner. Without it, I would look like a squinty old man. And is anybody else's eyelashes and brow growing back at weird angles? I've been taking the Biotin, hoping that helps them grow back.

BBwithBC45

My eyebrows are about 90-95% back, I probably could get away without filling them in at this point and yes - they did grow in at weird angles, kinda bushy looking. My eyelashes were completely gone at one point in time. Now they're about 70-80% back in length and as thick as they used to be prior to chemo, but I have been using Latisse for the past month.

I recall reading that they can go through 2-3 cycles of falling out and growing back after chemo, so if this happens to me I will be sad to see them go again.

eheinrich

I have to be on the look out for eyebrow hairs as loose cannons. Some of the originals look like long old man eyebrow hairs. Completely unruly.

ThePrincess

BBwithBC45 - omg if they fall out AGAIN after they grow back I'm going to pitch ONE HELL OF A FIT

BBwithBC45

ThePrincess - we can throw a fit together.

Italychick

Eileen, I have them too. Kind of grow straight out and then curl toward my eyes. Thats attractive (NOT). Oh, and growing on my eyelid too, sigh. And still plucking all the face hairs. I even found a few on the side of my nose, gross! I think my lashes have fallen out three times so far. First time, bottom right, then bottom left, now both top. At least there are little stubs on the top lashes.

For ladies with about 1/2" of hair, have you given up the wigs, scarves, do rags yet? I'm wondering what is the right length to quit all that crap. I see women with hair as short as mine who seem to do it on purpose, so just wondering. The wig has been history for quite awhile, too hot

wpmoon

Theresa, I've had the little hairs on the side of my nose, too. Super attractive! A friend of mine was pestering me the other day to start dating. Uh... no thanks. I'll wait until all of the CORRECT facial hair grows in, and the unruly hairs calm the F down and stop showing up in random places.

That and I still don't know how to tell someone I'm dating about the cancer. First date? Third date? Upon introduction? So many people say "just do it when it feels right" but this fear of having to tell someone at all, and the thought that they may leave because of it, is kind of crippling.

Trvler

I have anywhere fro 1/4 inch to 1 inch and I am not going to go without anything probably until it's completely grown, expect to Jazzercise. I have to say, I am starting to like walking around the house with little to no hair when no one is around now that I have enough to almost cover my bald spots. There is a reporter on tv that had it and she wears her hair VERY short. I just saw her a minute ago and kind of thought hmmm…maybe not so bad. I would have never considered short hair BC.

My eyelashes are at weird angles. And my eyebrows…I can't figure out if they are coming or going. I used to have to trim them because they got so long. Now I am not trimming them for anything so some of the hairs are long and some are at weird angles but I don't know if that's because I am not trimming.

Theresa: What kind of color did you use?

I met a woman last night at the therapist I took my daughter to. She had on a scarf so after my daughter went in I started talking to her. She had finished chemo in June and took off her scarf and barely had any hair. I was surprised but she was on the taxotere/herceptin regiment.

Whitney: I totally understand. How are you feeling, BTW?