Chemo in July 2015

madrew

Peabrain-best picture ever! Made my morning!

MissBee123-I couldn't agree more. Let's not get cancer again.

Mom2ABoy-I agree with the others. I feel well enough most of the time that camping would sound like a manageable endeavor. And then I'd find out it's probably more of a challenge than I had anticipated. My counts drop to zero-ish each time as well which would make me very nervous.

mdoc524-I worry a lot about how to keep my kids' live as normal as possible during this whole ordeal. Thankfully, mine are older. I just sent my almost 21 year old daughter off for a semester away for college. It's almost a relief; I'm hoping she can have some non cancer normalcy in her life. My 16 year old son starts school next week and is active on the cross country team. I'm hoping this will be a good distraction for him as well.

I had my 3rd session yesterday. So far so good but starting to get tired, mentally as well as physically, of the whole cancer/chemo thing. I'm going to try and fit in a funny movie or something today to boost my lagging spirits. Well, I'm off to take some sort of pill.....

6feetover

Peabrain: Dagnabbit! No fair! All I get is blue and white striped seersucker at my visits! ;P

Spock on! \m/

Batesburg

Love all the high spirit posts! Just a reminder on this Wednesday that we can use our good minds and strong wills to get through this together!

Cheers to choosing foods high in phytonutrients when we CAN eat- a way of feeling more in control. I'm off to Whole Foods today to be sure to stock up with organic fruits and veggies and good, healthy fats - I've been eating organic celery lately- wash it well, eat it plain or sometimes with organic peanut butter or hummus. Loving carrots, too.

Anyone have any good whole food recipes?

Namaste,

Janet

Gretagirl

mod sorry to hear about what you had to go through ! Hope you are on fast road to recovery and have a wonderful birthday party!

Twnkltoz congratulations!!

MissBee123 hope your stomach issues resolve soon!

Twnkltoz

thank you! So far, so good.

Thunder7

Hello Ladies,

I noticed a few of our board friends have not had surgery and are asking some questions about BMX. I know that when I was getting ready for surgery I looked everywhere for a list of things that would be helpful in the first week or so after. So below I am making the list I wish I could have found in one place :-) Please feel free to add to it:

Twnkltoz and Jbandkb1

1. I purchased the Heal in Comfort kit and an extra shirt from Heal In Comfort the shirts are soft, easy to get on and off and securely hold the drains. It comes with a lanyard to hold the drains while you are showering, and a pocket belt that can be worn under your regular clothes when you are ready, They are presentable enough to go out in and comfortable enough for sleep. I cannot recommend them enough.

2. Buy some super soft tagless men's boxer shorts. I liked the Fruit of the Loom ones from Amazon Buttoning regular clothes is not really doable and my abdomen was swollen from the surgeries.

3. Make a comfort station for yourself. A recliner or couch corner. Have your laptop, phone, kindle, tablet etc set up here along with the charging cords. Extra pillows, books and the remote control :-)

4. Have pillows for under your arms. My hospital provided them, made by the lovely ladies of the hospital auxillary. Small pillows with a half moon top to securely fit under your arms. Helps with comfort and sleeping.

5. Coming home from surgery be sure to take some kind of pillow to put across your chest so that the shoulder belt does not bother you!

6. I was able to sleep in bed. Propped pillows up, arm pillows helped me stay upright. I put some xl trash bags under the sheets along with some beach towels to catch any fluid in case a drain opened. (none every did but it is a new mattress!)

7. Have your helper put clean glasses and plates on the kitchen counter so you can make yourself a snack.

8. Put the foods you want on a lower shelf in the refrigerator. The more you can do for yourself the better you feel.

9. Buy fairly tight sports bras - I would suggest the kind with thick straps. I used the champion style that has been around forever. You will come home wrapped in a huge ace bandage. But you can quickly replace this bandage with the bras. Buy quite a few, you will be wearing them for weeks.

10. Have a clipboard and pen in the bathroom so you can record your drain fluid. I so recommend that you "strip" your drains every time you empty them. I had some clots in the hoses and if I had not kept up with the stripping a seroma could have formed.

11. I was able to wipe myself, I think it depends on the person and the surgeon. If you are concerned about this go to a dollar tree, dollar general, etc and buy a could of tongs that you can wrap toilet paper on to wipe with.

12. Do your exercises they give you and stay hydrated. Follow instructions I was told not to lift anything over 8lbs.

13. My surgeon used a product called Tegaderm. basically a silicone film that covers the incisions and drain holes. Because of this I was able to shower 24 hours after surgery. If you do not do the heal in comfort kit get yourself a lanyard you can use in the shower to hold your drains up and out of the way.

14. Have shampoos and soaps that have pump tops. I found it difficult to hold and squeeze regular bottles.

15. In Sam's Club drugstore section they have Adult Washcloths that are basically larger, thicker baby wipes. They are wonderful to use to just freshen up. Especially since I was not allowed to use deodorant for weeks!

16. Make a list showing when you took your pain med, ibuprophen, etc. I used mainly ibuprophen during day and pain med at night to help sleep. I really did not have much pain though.

Love,

Thunder7

Jbandkb1

Wow thunder7 thank you so much for all your information. Very helpful. How long was it till you felt somewhat normal after BMX? I have 2 small kids they will be 3.5 years & 16 months when I get my surgery.

Thunder7

Hi Jbandkb1,

My situation was a little different, I had the BMX and then a week later had to go under again and have 15 nodes removed on the left side. I was really doing quite well after the first week and then again a week after the second surgery. Once the drains were out I felt great. I had four drains, the center two came out at 2 weeks after original surgery and the other 2 came out 4 weeks after original surgery. I feel that the drains schedule would have been 1 week and 3 weeks had the second surgery not been involved.

Even with the drains, I was driving, working my garden, dressing myself soon after the second surgery, I would say a week.

With your precious babies, it will be a more difficult as you will not be able to lift them. However, I think you will be able to do most everything else 1-2 weeks after surgery.

I also had prepared and froze meals so all my husband had to do was thaw them. A couple of days after the surgery I was able to cook by myself if the utensils, plates were already on the counter!

Thunder7

Twnkltoz

awesome information! Thank you so much for sharing!

Gretagirl

Thunder7 thank you so much! I am considering this surgery after chemo

6feetover

Good thing my DH has a strong stomach; guess I know who'll be taking care of my drains if I opt for BMX. Holy horror, Batman. OMG.

Jbandkb1

Thank you again Thunder7 for all your info. I meet with a plastic surgeon next week & I like to have some info ahead of time.

Suzanne1971

thank you thunder! That is a great list!

I am single, but my mom will probably stay with me for a week or so after surgery. And I'll have to send Olivia (dog) to camp for a week or two, as she is too big for my mom to walk I'll want her around me, for sure, but can't risk walking her myself. Good thing she loves camp 😳

I'm hoping that having no hair on my head while recovering from bmx will be a plus! One less thing to deal with.

Are the drains gross? Seriously. They sound gross. I keep telling myself that if I can handle chemo, I can handle anything. Even gross drains.

Twnkltoz

I am also lucky to have great support! A friend is going to lend me a big wedge for my bed and we have plenty of pillows of varying sizes and shapes. I bought a PJ set that buttons up the front and feels nice and soft, but I think I will invest in one Heal in Comfort shirt--the package comes with the lanyard for the shower and everything, so it seems like a good buy even though it's expensive. I won't have reconstruction until next year, after radiation, so I'll probably need it again.

mdoc524

Hello All - Thunder beat me to it as I was writing down what I could share as well.. Awesome List Thunder ...

A few things to add and let me say I have no regrets with my BMX decision - I made that decision the minute they told me I had BC.. everyone is different! The recovery is not as bad as it used to be.. The chemo is way worse! If you can get thru chemo you can get thru BMX - TE's are uncomfortable but not terrible - I have to live with mine until next Feb/Mar when RADs are done .. was not the original plan - positive lymph nodes for me changed the plan !! Here are added my tips:

Drains are not gross but I would recommend to make sure your nurse shows you exactly how to strip your drains and you want to do this every hour every day - it will help get the excess fluid out and hopefully get your drains out quicker than normal .. my drains were in for 21 days!! Some get them out within 1st 10 days to 2 weeks - so strip away .. it works!

My PS also let me shower 48 hours after surgery and not easy with drains as you cannot let them just hang from your body so let me see if I can put into words what my husband did .. we should patent this.. we bought mesh laundry bags at the Dollar Store and my husband cut off one corner to create a pouch big enough to hold both drains and then took a large shoelace and tied to each end of the pouch so I could put it around my neck with the drains securely in it while I showered. I was nice because the water just ran thru it since it was mesh ...

If you do not get the Heal In Comfort shirts - wish I had known about them - my hospital gave me these little cloth pouches that I pinned to the inside of my shirts and easily put the drains in them

Agree with lots of pillows - we actually bought a Recliner and I spent 6 weeks on it - would highly recommend! Still use it on rough chemo days

As some are asking about returning to normal activity. To echo the others - 1st week the roughest and then once drains out much better! My PS said no lifting at all for 6 weeks and then nothing over the shoulders/head until the reconstruction is complete. You do not want to over-do it as you could get pockets of fluid that could become a problem. I had a small one that they watched and it went away on its own. My left side expander has now dropped significantly - no idea what I did! I share just to make sure that you might feel great a few weeks after BMX but still need to be careful especially with lifting

Sports Bra - my PS wanted me in tight sports bra - you can find Open Close (Zipper) Danskin Sports Bras at Walmart for less than $10 .. I used to wear a 38 B/C and had to wear a size 2X in the Danskins .. they are very comfortable and zipper front is great. I also wore Old Navy Tank Tops a lot as well especially to bed

Shirts - I mainly wore Button down shirts (Pajama tops) around the house - especially in the early weeks so you don't have to lift arms up for a shirt ..

There are a few forums here you can browse around on for other info .. under Forum: Surgery Before During and After - 2 Topics: April/May Surgery Sisters and Shopping/Packing/To-Do List for Surgery and Recovery... and then under Forum: Breast Reconstruction - Topic: TE's A Beginners Primer - all of these have lots of discussion and tips that you may find helpful ..

Thanks all for the well wishes - I am much better - not fully - still weak and shaky so they decided to delay AC #3 from tomorrow to next Friday and they plan to reduce the dose to keep me out of the hospital! While I am disappointed to move my December Chemo End date out - I am thankful for the break - I just don't feel strong enough for the Red Devil tomorrow. My twins birthday today while low key has been a very nice day. We plan to surprise them with a Phillies Game this weekend

Hoping everyone is doing well or at the very least managing as best as possible! Hugs to all

Mary

dchavy

Hi everyone,

I've posted a couple of times but have mainly been a lurker. I had a hard time with chemo and have not been able to do much but lay around since the first treatment. I have read this board everyday and you can't imagine what a help you have all been to me. This is the hardest thing I've ever had to do and I wasn't confident that I was going to make it through my four AC infusions. I had my final infusion yesterday and the SE's are the worst so far. Just knowing that this is the last time is helping tremendously. There is a slight chance that I'll need four rounds of Taxol after my BMX if I have positive nodes but I can't let myself think about that now. I am looking forward to surgery sometime towards the end of September.

I really just wanted to say thank you all for posting as frequently as you do, you really did keep me afloat. I wish I could've reciprocated but I just didn't have it in me.

I hope everyone gets through their chemo quickly and can see the light at the end of the tunnel. I have so much love for each and every one of you.

Dawn

6feetover

Dawn: Right back atcha! *Big hugs*

Twnkltoz

I'll most likely get TE with my BMX, then rads. I know no lifting... But can I reach over my head? I do a lot of partner dancing (not while in chemo of course), and I'm wondering when I can get back to it.

Thunder7

Hi Twnkltoz,

I do not know about TE, but with the BMX I could not raise my arms high above my head until the drains were out. Sounds like with the promise of dancing you will be religious with your stretching exercises!

Thunder7

Thunder7

Dawn, Glad you are here! I know the feeling. Sometimes I lurk, sometimes I participate. Thunder7

mdoc524

hey Dawn - it is OK to be a lurker - congrats on completing your last AC - Hugs to you to get thru the se's!

Twnkltoz - your PS will let you know when you can bring arms up over head/shoulders - I was given the OK to raise arms over head at 6 weeks but still no lifting that high until after reconstruction complete - your PS may tell you something different! Hope that helps!

Mary

6feetover

Mary, et al.: If one can't lift anything for six weeks, nor lift anything over one's head for months, how on earth is one supposed to function at all normally?! I'm shocked to learn that you were (and I guess I'll to be, if I opt for BMX) sent home with fluid actively draining?! Isn't that dangerous? We're to be our own nurses, then? Who cooked/cleaned/did the shopping/etc. while you ladies were confined to bed/recliners for weeks on end?!

I'm actually pretty horrified right now. I apologize if I've upset or offended anyone, but this all sounds incredibly barbaric. I'm fighting back tears. There's no way I'll be able to handle any of this. I can't even deal with looking at a cut/scrape/sutures on myself (or handling the pain of something even that minor) or anyone else, let alone having to actively drain fluids, deal with debilitating pain, etc. I'm in serious trouble, I think.

auroaya200882

adarkadapted I understand being scared but I would like to ease your fear somehow. The "draining" you would have to do would be into one or two spheres where the liquid accumulates attached by tubes to the incision you drain them by squeezing the liquid from the incision to the sphere. When the sphere is full to a certain level you detached them from the tube and measure it and drain the liquid in the sink. I lived alone when I went through this and even flew in an airplane with the drains. Like I said it's easy to get scared but try to remain calm and surround yourself with a support network. I'm sending you thoughts of strength as you go through this experience .

Auroay

6feetover

Auroay: Thank you for the info and the kind words. I don't know how you did it on your own. This'll be just another burden for my poor DH; I'm getting nauseated just thinking about all of this. To say that I've got a weak stomach is putting it mildly. My DH *is* my support network...

Twnkltoz

It's definitely scary, but we do so many amazing things when we're faced with them--things we never thought we could do. We'll get through this, too. I'm definitely not looking forward to it, and I hate that it's going to be so long before I'm back to normal! I actually teach dance, so not being able to raise my arms over my head before I'm over the reconstruction...that is a long, long time. Ugh.

Have to remind myself: keep focusing on one step at a time.

I'm tired today, but otherwise doing pretty well.

6feetover

Twnkltoz: I'm glad you're doing well today. I wish I were brave like you and the rest of the ladies here!

mdoc524

Erika - I am sooo sorry if my post scared you - let me see if I can explain better! The drain tubes are stitched in & you do not need to do anything at the site! The tubing is attached to bulbs that fit into the palm if your hand & the fluid drains into the bulb! You or your husband a few times per day have to empty the bulb into a measuring cup & record the amount each time! Your PS normally will remove the drain once you are draining less than 30 cc's per day - could be less ... Stripping the drains is not a big deal - all you do is take the tubing & squeeze it down to the bulb - takes but a minute!

As far as activity - the hardest part was the 1st week or two - I did not find the lifting or raising arms as hard as it initially sounded - just managed around it! I was not in bed or in the recliner the whole time .. My Hospital offered a class on BMX surgery & I went to it - highly recommend if your hospital offers!

Again sorry this has you so stressed - let me know any other info or questions to help...Hang in there

Mary

6feetover

Mary: You're a doll! Thank you for the explanation regarding the drains; actually, I pretty much correctly envisioned how it all would work, based on all of the informative posts here (yours and others'). That's my whole point, though. I don't know how you or anyone else has been able to stomach any of it. Measuring the fluid from the drains?! That means that I'll have to look at it! I could never bring myself to look at my own mother's MX scar, even after it'd been healed for years. I'm going to vomit. This is worse than a horror movie... OMFG.

gargengirl09

@adarkadaptedi- Here's my two cents worth regarding the drains. My husband couldn't "strip" the drains and measure the output. So, I called the nurse at my surgeons office and had home health care come out once a day. Now you are supposed to do it more than once a day, that's where my neighbor and a friend helped, who are both nurses. One of them always used a little alcohol swab to "Strip" the tube. It made it easier to do. I highly recommend doing that. It's hard to do yourself, so you really need to recruit help. Be sure to ask if they will give you supplies to help with the drain-alcohol swabs, a little cup and some gauze. I highly recommend checking into home health care. If your insurance covers it, go for it.

I didn't like looking at the drain, so I put one of my 8 year old daughters socks on it! :-) It really isn't that bad, I just didn't like looking at it!

I had my first Taxol and Herceptin yesterday. Wow! So much easier than AC!!!! I'm even drinking coffee today! Small victories!!

Hoping all of you have a good weekend!

6feetover

gardengirl: Thank you for the advice–I really appreciate it.